Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Show Notes:It’s not about lowering expectations; it’s about providing the right support and opportunities when hiring someone with Down syndrome so they can thrive.In this episode, we’re joined by the inspiring Matthew Schwab, a young man with Down syndrome who’s breaking down barriers in the workplace. During our conversation, we talk about some behind-the-scenes stories about his recent marriage proposal to his long-time girlfriend, and how they’re trying to encourage Big Time Rush to be part of their wedding reception. Matthew’s journey is a testament to the potential and determination of individuals with disabilities.

From his early days volunteering at local organizations to securing paid roles at Chick-fil-A, the government, and currently at Ruckus Pizza, Matthew has faced and overcome numerous challenges. He shares his experiences with honesty and humor, offering valuable insights into the world of disability employment for those considering hiring someone with Down syndrome.

Matthew’s passion for advocacy shines through as he discusses the importance of support systems and breaking down stereotypes. He emphasizes the need for employers to recognize the unique skills and contributions of individuals with Down syndrome.

Parents of children with Down syndrome will find Matthew’s story particularly inspiring. He offers practical advice on preparing for the job search, advocating for their child’s needs, and fostering a positive mindset.

Join us as Matthew shares his inspiring story and encourages listeners to embrace diversity and create inclusive workplaces. See the links below to follow Matthew on social media and to book him as a speaker for your organization!

Matthew’s contact information:

Website: https://matthewschwabspeaks.com/
YouTube: @matthewschwabspeaks7136
Instagram: https://www.instagram.com/matthewschwabspeaks
LinkedIn: https://www.linkedin.com/in/matthewschwabspeaks/
Facebook: https://www.facebook.com/matthewschwabspeaks

Easter Seals: https://www.easterseals.com/

*** Thank you to Gigi’s Playhouse for allowing us to use the video of Matthew’s proposal to Lucia that was posted on their Instagram account on November 8, 2023. To see more of what Gigi’s Playhouse offers to individuals with Down syndrome and their families, contact them!

Website: https://gigisplayhouse.org/
Instagram: https://www.instagram.com/gigisplayhouse
`Podcast: https://gigisplayhouse.org/alittlesomethingextra/

Check out the NEW Water Prairie Prayer Journal for Parents! https://amzn.to/3TDBIO5

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

Support our podcast and help us share more incredible stories by making a donation at Buy Me A Coffee. Your contribution makes a significant impact in bringing these stories to light. Thank you for your support!

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Matthew Schwab is a 26 year-old North Carolina native who lives in an apartment with his younger brother.

In addition to being a public speaker and community volunteer, Matthew works at Ruckus Pizza, Pasta & Spirits.

Matthew is passionate about raising awareness about Down syndrome. In 2019, he gave a TEDx talk about the importance of employing those with IDD. Matthew proposed to his long-time girlfriend in November and the video went viral on social media.

Episode #110: STOP Limiting Potential! Discover the Benefits of Hiring Someone With Down SyndromeIt’s not about lowering expectations; it’s about providing the right support and opportunities when hiring someone with Down syndrome so they can thrive.###### (Recorded June 19, 2024)

Full Transcript of Interview:

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Show Notes:Help for special needs families in divorce! Learn practical strategies for managing stress, maintaining your emotional well-being, and providing the best possible support for your child!Are you a parent of a special needs child facing divorce? Tonya has a powerful conversation about special needs families in divorce with Mary Ann Hughes, a certified special needs divorce coach and expert.

In this episode, Mary Ann shares invaluable insights and practical advice on navigating the unique challenges of special needs families in divorce. Discover how to:

Prioritize your child’s well-being: Learn strategies to protect your child’s emotional and developmental needs during this difficult time.
Advocate effectively: Understand how to use your advocacy skills to ensure your child receives the support they need.
Manage stress and emotional challenges: Discover practical tips for coping with the emotional toll of divorce and maintaining your own well-being.
Build a positive co-parenting relationship: Learn strategies for effective co-parenting and minimizing conflict after divorce.
Create a brighter future: Discover how to rebuild your life, maintain important relationships, and create a positive environment for your child.

Don’t miss this informative and empowering episode!

( The information contained in this interview is not legal advice and is for entertainment purposes only. )

divorcehelp #divorcetips #specialneedsdivorce

Connect with Mary Ann:

Website: https://www.specialfamilytransitions.com/
TikTok: https://www.tiktok.com/@SpecialFamilyTransitions
Facebook Page: https://www.facebook.com/specialfamilytransitions
Instagram: https://www.instagram.com/specialfamilytransitions/
YouTube channel: https://youtube.com/@specialfamilytransitions
LinkedIn: www.linkedin.com/in/mary-ann-hughes-special-family-transitions
Video on Social Stories to Explain Divorce: https://youtu.be/wQtGlyZwCUI
Mini-course: Keys to Success in Divorce for Moms of Children with Special Needs: https://bit.ly/DivorceTipsForMoms

Check out the NEW Water Prairie Prayer Journal for Parents! https://amzn.to/3TDBIO5

As an Amazon Associate, I may earn on qualifying purchases.

Check out this interview with Todd and Kristen Evans on how to strengthen your marriage: https://youtu.be/UwPWwM5FHE0

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Mary Ann Hughes is the proud mother of sons on the autism spectrum. After her divorce journey where she successfully advocated for her children’s needs, Mary Ann started Special Family Transitions to help families navigate the overwhelm and complexities of special needs divorce to get the best possible outcome, with as little time, money, and stress as possible. Combining her experience and certifications as a Certified Special Needs Divorce & Transition Coach, Mediator, CoDirector of the Special Needs Chapter of the National Association of Divorce Professionals, LoneStar LEND Fellow, MBA with business experience in Fortune 100 companies, and years of special needs advocacy, Mary Ann is committed to help guide families with loved ones with disabilities through divorce challenges.

Episode #109: Strategies for Special Needs Families in DivorceHelp for special needs families in divorce! Learn practical strategies for managing stress, maintaining your emotional well-being, and providing the best possible support for your child!###### (Recorded April 30, 2024)

Full Transcript of Interview:

109 Final

Mary Ann: So just know that, um, no matter what, you’ll be okay and your kids will be okay, and you’re not alone.

Tonya: Let’s face it, raising a child with special needs is an incredible journey, but it can also put a strain on even the strongest relationships. And when divorce enters the picture, those challenges can feel insurmountable.

Welcome to the Water Prairie Chronicles, a podcast for special needs parents. I’m your host, Tonya Wollum, and I’m glad you’re here. In this episode, I’m joined by Mary Ann Hughes, the owner of Special Family Transitions, who will share her expertise and personal experiences to help you navigate the emotional and logistical hurdles of divorce while ensuring the well being of your child with special needs.

The information contained in this interview is not legal advice and is for entertainment purposes only.

Mary Ann, welcome to Water Prairie.

Thank you, Tonya. So happy to be here today.

When you and I first started communicating on a possible topic, it was one that I realized, I think, I think yours was the one that, that, that came in that made me think, you know, we’re really hitting some hot topics this year.

We’ve had, um, Well, we’ve talked about grief, we’ve talked about loss, we’ve talked about some hard decisions that parents have to make. And because our target audience are special needs families, they’re already facing tough decisions daily with having to juggle medical appointments and schooling and just all the questions that come along, no matter what your child’s diagnosis may be.

And today we’re adding one more of those tough conversations, but I’m really excited that we’re able to dig deeper this year. And add some, some content that people may not normally want to talk about. It it’s, it’s not easy. It’s not easy and the best of situations. And before we go in too far, I did want to reference for any of our listeners that.

If you’re in a situation, if this, if the title of this got your attention, because you’re considering divorce or because you’re in the, in the throes of divorce right now, um, we’ve got some, some information coming that’s, that’s going to hopefully help guide you a little bit here. And Mary Ann is bringing in a wealth of expertise that’s going to be able to, to help give you some good information as we go and resources for you to follow up on afterwards.

But if you are not to that point yet. We have had a conversation with Todd and Kristen Evans about just how tough it is on the relationship on the marriage relationship when you have special needs children. So I’m going to link their. I’m going to be doing an interview here as well, and I’d encourage you to listen to that one and see if maybe you can get some pointers there to help strengthen your marriage.

If you’re not to, to this point yet, but that being said, Mary Ann, I really appreciate you coming in and being willing to be vulnerable with me today to, to talk about this and to help us give some hope and some strength to the path that some of our families may be following right now. So, thank you.

Thank you so much for the opportunity. Like you said, this is my passion, my calling now. I personally have been through a divorce, I have a mom of two children, now young adults on the opposite end of the autism spectrum. And so I personally have been through this and I know what it takes and how hard it can be and all those things you mentioned at the beginning, at their introduction, the loss, the grief, medical decisions, all that comes into play.

When you’re facing with a divorce and having to think about how to plan for you and for your kid’s future. So, and definitely I totally support, um, trying to work on your marriage if you can, but sometimes it’s beyond that point. So I’m here to support people when they are thinking about it or going through it or even afterwards.

There’s no right decision for anybody. Every. Situation is different. Every divorce is different. And what your life looks like after divorce is different too. But what influences that is how you handle yourself and the whole situation during divorce. That’s why it’s really important to come at this in a way where you’re thinking about the longterm, thinking about things strategically so that you and your child and even your ex can hopefully.

Have a good future going forward.

But I want to point out too, that this is a judgment free conversation. Listeners, no one is sitting here saying you shouldn’t be here. You shouldn’t have gotten yourself to this point. We, we are not coming, coming from that approach at all. So you should feel safe here.

And we want you to be able to, to gain information and to feel stronger by the time you finish listening to our conversation. If, if, if, if we’re doing, doing this, right. So, so to start out with. I thought we’d look a little bit at just the reality of what some of some of our families may be facing right now.

When we have special needs children, we worry about a lot of things. We worry about, as we mentioned before, their education, just their friendships, their inclusion and things. But, If we’re facing a relationship that is having a rough road, we’re also going to be worried about how that’s going to impact our children, our children who are walking in that and that typical path, but even more so our children with special needs.

So can you share some of the most common challenges that parents face during a special needs divorce and how those differ from a typical divorce?

Sure. It’s a great question. And so the first part of that is how do you share that information or break the news to your child that’s happening or in the process of happening.

I would suggest that They do receive advanced notice. I know sometimes one spouse may be caught off guard and so there is no advanced notice and and That, that happens a lot. And, but if you can, if you both work together and decide that divorce is going to be the best option for you, the marriage is not working out and that’s the decision you decide to go, then we want to kind of break that news slowly.

And sometimes when I reference a child, I’m referring to a neurodiverse kind of child. I might, like I said, my kid has autism, so I’m kind of taking that as an example, but it can work with children of any kind of ability or, or special challenge. And so, um. So if we can do this slowly, you know, we don’t want one parent, um, to be gone all of a sudden without any notice, we want to try to work to that, right?

Because that’s, that’s the hardest thing is one day they’re there and one day there’s not and there’s no explanation. So ideally, if they know it’s coming, you can have kind of build up to that and, and speak to them on their level. And one way I found that worked for my family is, um, to develop a social story.

So a lot of your districts may be familiar with social stories, have used them. At school or for Vacations or upcoming changes in routine. And so that’s the way that I introduced my kids at the time. I still call them kids. They’re now in their early twenties, but at the time they were a little bit younger and, um, I had to explain to them what was happening in a way that they can understand and try to make sense of it.

And so I did in a very positive fashion so that they knew that they’re still loved, but that’s a big concern for any kind of child, right? Any kind of divorce is they want to make sure that We don’t want them to feel responsible or that they had any reason behind that. Right. I mean, granted there’s a high rate of divorce among families that have a child with some kind of special need, but it’s not because of the child.

It’s because of the parents and issues related to that. So having said that, um, we want to make sure that. We present this in a way that they know that they’re loved. Both parents still love them and that things are just going to look different. We want to try to explain what those things are, right?

Here’s my, you know, we’re going to say, you say you’re living, you know, the home, say where your mom still lives. And if you have, um, if dad has a new place, we want to try to get pictures of that place. Ideally before the kids go there for the first time. So they know kind of what to expect, what that might look like.

If they have, uh, Um, a room there, what the room might look like, if maybe they can help decorate that room and make it feel like their home away from home. And it is that their home when they’re with the other parent. So we want to remember that, um, you know, a child, you know, is close hopefully to both parents and feels like they’re half mom and half dad.

So we don’t ever want to speak negatively about one parent because then the. The child may internalize that. So, um, so I had, so I created a social story, which is very helpful. I did get pictures and I kind of talked about what the routine, as much as I knew what that would look like. So they want to know what’s going to happen.

When am I with mom, when am I with dad? Am I going to be at the same school? Am I going to have my same friends? They want to know the basic things that we care about, kind of the, um, yeah. You know, Maslow’s higher care needs. What are, you know, basic shelter, food and clothing. Why am I going to have what I need as a child?

And then the other things you can work on as well. But I developed a social story and they shared it at school with them and the teachers who want to involve teachers and community as well. So whether it’s teachers, therapists, other people that are close to them to kind of help reinforce. And support them through this process.

So we don’t want to do this in a vacuum where there’s a whole community takes a village. Um, so we want to, to, you know, rely on people who are there for us, maybe to step in for us or to support us as we’re going through this change. And one of the reasons I created the social story, I tried to get help for my kids, and it was really hot, hard to find a mental health professional.

Comfortable and knowledgeable about how to share this information with a child who’s not very maybe communicative or has behavior issues. And so I try all different ways. And finally, somebody said to me, you know, Mary Ann, what do you do? When you have a change, and there is a change for your kids that you have to explain.

And that’s one way back to the social story, which I’ve used when I went on vacation to try to prepare them so that the change wouldn’t be as scary. They knew what to expect. So it’s kind of same thing, I guess, in this scenario,

I like, I like the idea of using the social story and our kids who are on the spectrum, a lot of times have used social stories, but even kids who aren’t,

and may not have used the social story before, parents, that is a great tool that you can use with my kids. We used that type of thing before we had a major move. And, um, and even when my daughter, who’s, who’s the oldest, when we moved her out of the crib into the toddler bed, we had a story for her because it was, it was a major transition for her.

There was security in that bed and it was, you know, It was a big one for her. So, um, so I, I, I think that that’s a great practical idea for, for any of our parents. So even if you aren’t familiar with it, um, We can, we can put some resources in the notes for you too, if you, if you don’t know how to, how to put that together.

Um, one thing I was thinking too, is that we’re talking about parents who have been advocating for their children everywhere up to this point. So, most of our parents should have pretty strong advocacy skills going into, to this and, and hopefully it’s not a major conflict. It’s, it’s an amicable. Situation, but it isn’t always.

So how can those skills be used effectively to advocate for the child’s needs? If it’s a high conflict divorce.

I love that question because that what that is, that was my mission and my divorce to advocate for my kids. And that’s why I teach my clients and that’s how I’m seeing it kind of sets me apart.

Is that obviously is kind of my biggest, um, strong point and what I stress to the parents I work with. So, so as you mentioned, as you, as a parent, you’re advocating for their school, for their therapies, whatever they might need in life. And so you’re doing the same thing in a divorce. And so whether it’s high conflict or even an amicable one, you want to try to think about what is, what are the child’s needs?

Don’t think just about right now, but think about what it would be in the long term. So say your child is 5, I know it’s hard to think about when they’re 15 and 25, but as much as you can, think about what they might need, where they might be in school, if they’re in a private program, how much that might cost, what are the therapies that they need, what is it that they need now, and then some things that they might need in the future, because we want to look at that as a whole and try to, if we can, put a cost to that, too.

Thanks. And how much of our time and what kind of other resources are needed so that when we’re talking about divorce and, and, you know, divorce, there’s a lot to it, right? A lot of emotion, but at the end of the day, it’s a legal and financial transaction. I hate to say it like that. It sounds kind of cold, but that’s what it ends up being.

We want to make it as positive an experience as we can, but at the day, that’s what. Um, the courts are going to want and judges and lawyers or how are we going to split up what we have and how are we going to support our kids, um, for the child’s best interest. And so it all works together. So we want to by putting the child 1st and their needs and what they’re going to need now and in the future and make a plan for that.

That’s going to hopefully, um, reduce some of the conflict in other areas in the divorce discussions and help you together plan for what that might look like for the child so that you can come to agreements in divorce. You can agree on what child support might look like. You can agree on what other types of supports, um, are going to be available.

What kind of decision making it be? What kind of. Possession schedule, uh, is best for that child. Not because somebody says I want 50, 50, but really what’s in the best interest of that child, where are they going to, um, you know, get the support they need on a day to day basis, not that both parents can’t, you know, provide, uh, play an important role in that.

But, um, depending on what’s been happening in the past and maybe make a plan for the future, we want to think about all those kinds of things.

But I like that, that you pointed out that our goal is what’s best for the child. That’s in all of our advocacy, it’s not. What rights do we have, but what’s best for the child.

And it’s not always going to look the same from family to family. So I think that’s, that’s, that’s a good point there. So you’ve, you’ve described some of this already, but just thinking through and, and as I’m coming in, I haven’t personally experienced this, but I have watched it happen with many friends and family as well.

And it’s, it’s never easy. It’s always overwhelming. Um, And I’m thinking even more so when you’re dealing with one or more children who have extra needs that are part of that. So what are some strategies that parents can take on to help manage that emotional side of it all?

Sure. Well, first of all, you have to manage your own emotions.

Right, you can’t take care of your children if you’re not in a good place to do that. So part of the advocacy and part of the self care, which is a big component of this as well, is, as I was saying, you can’t pour from an empty cup. So you have to be in a good place, um, to make good decisions in your divorce and taking care of the kids.

So if you’re stressed and worry about the divorce and what life is going to look like, that’s going to, You’re rebuffing your kids, right? During their, when they’re with you, because um, taking care of kids with special needs and abilities is a, can be a full time job in itself, but so is a divorce, right?

If you’re in the, in the heat and thick of it. And so you want to be able to, um, kind of differentiate those and, and hopefully have divorce have discussions when the kids aren’t home, right, listening to that, because they can hear everything we’re saying, even if they don’t speak or they’re not verbal, they can understand, they sense the stress we’re under and the tones and so on.

So we want to try to shield the kids as much as we can from that. Um, so if you can, um, you know, talk about social stories, but if you can find someone to support them, a mental health professional, if you’re able to do that, that’s for yourself and for your kids, that’s great. Um, there’s things you can do to help with the transition, having maybe set schedules, having a calendar that you can refer to.

Um, sometimes instead of calling it, you know, X number of days with mom and dad, call it we’re going to have number X number of sleeps, right? Three sleeps at mom’s until we go to dad’s and two sleeps at dad’s or whatever that might be. So make it a level that they can understand and you want to have, give them an opportunity to express themselves as well.

They’re going through a lot of, changes and maybe confusion, understanding kind of what’s happening. So we want to make sure that we hear them and what they have to share and their concerns and try to address them as best we can. Um, once I call, I did a project once about this whole, this whole area. And the psychologist said, we’ll have a special play time for the kids.

No matter what age they are, they, they need time with that, with that parent, with each parent, hopefully, um, to just have some relaxed time, no rules and let them. This whatever happens happens during that time, right? If they want to have the lead in a game or an activity or a discussion, then we want to Um, you know, respect that time.

The other thing I wanted to ask about are, cause you’ve, you’ve walked with, with other families through this. So you have reference points that I don’t have, and I’m sure you’ve seen some positive and some negatives and without disclosing anything personal of what you’ve seen specifically, are there some missteps that parents can avoid through this process that, that you’ve seen that maybe you have some advice on being able to help them maybe navigate around those. Those steps, does that make any sense?

Sure, for sure. Yeah, there’s a lot of things that people do that maybe aren’t the best choice. Um, and so as an example, um, when people think of divorce, sometimes the first thing they think to do is to go run out.

And when you’re in a frame of mind where you’re not thinking rationally and not thinking about the good of everybody, you may not choose either the right attorney or the right kind of situation or the right kind of strategy to go forward. Um, what I would suggest is maybe before you make any drastic decisions or quickly come to a decision, then maybe seek out somebody who can help you think through kind of what’s happening to you, whether it’s a mental health professional or a divorce coach.

So I’m a, now a certified special needs divorce coach. So that means is, uh, that’s my specialty and I can help people kind of think about all the things that they, they need to. Consider as they’re, as they’re going forward. And so, you know, you want to think about what’s important to you and what’s going to be important in your future and sort of thinking about those things and maybe pull all the other things together as well, you know, documents and start having conversations about what you want life to look like for you and for your child before you get to an attorney.

And so that way, when you meet with an attorney, you’ll have a. Um, you can ex share better your perspective and then have them kind of take your lead as opposed to you taking their lead.

Would you recommend that, because I’m, I’m assuming that the first time that meet with, that you meet with an attorney, you’re going by yourself. Would you recommend that they take a friend or someone with them as another set of ears?

You could. I mean, a lot of, um, lawyers will offer consultations sometimes for a fee, sometimes for free. And so, yeah, it definitely, um, helps to take somebody if you can, um, to be kind of an impartial person and maybe share things that maybe you forget to say, or if you’ve talked obviously ahead of time, you kind of maybe have written down and have thought through some of these things.

So, yeah, lawyers are there to help you and they provide the legal structure and the strategies and ways. to support you and advocate for you. Um, but you also want to make sure that you’re working with an attorney who understands special needs divorce considerations. There’s a lot who don’t. They say they’ve maybe had some here and there.

Really what’s important in a divorce involving a child with any kind of disability is making sure that you’re finding attorney and other professionals as well on your team who understand what it takes to be successful, what that child needs, and what you’re going to need. As part of that process, and so there’s a lot of things that I won’t go into a whole lot of detail here, but financially, you’ve got to set things up so that your child is not at risk of losing or not being eligible either now or in the future for government benefits, for instance, so you have to have somebody that understands that and that language and working with people who can protect you, help protect you and your child through the process.

We’ve had conversations in the past about some of those benefits. We have some others this season coming on. So parents, if that’s new to you, look back on those because that is an important piece of planning on your child’s future. And we’re talking about planning that far in advance. In this, in this situation, the other thing, as I’m thinking through, like, because the reason I ask about the question of whether you would take someone with you or not, I’m just thinking about how emotionally vulnerable you might be at that moment and, and just like going into a diagnosis in a doctor’s office, sometimes you’re not going to think of everything that you need to ask or that you want to ask.

So in a second, for me, I would probably, Okay. Need somebody there to kind of help either that or have a whole list of on paper that I have to follow of all of my, my, my checkpoints that I wanted to talk through. But thinking that on that same route, same line of thought, um, sometimes I know that going through your, you’re so focused on within the family at the time and all these other things that are going on to help walk through the process of the divorce, that You might isolate a little bit from from your normal support group.

That’s there Do you have any tips for parents on how to maintain those networks? Excuse me while they’re going through and after the divorce.

Right. Yeah. So like you said, this is a very emotionally difficult time, and we’re not thinking at our best. And so that’s part of what I do is go for help you go from the emotional side of divorce to like the, to the business side, how to make better decisions in divorce.

So definitely that’s what I’m here to do, but you know, we can’t, we can’t do it alone. We need our support community. Whether it’s our church, and even then there may not, you know, may or may not be people there who understand and support you and can help you through that process. Um, there’s divorce support groups, uh, there’s online Facebook and online groups that, that can offer a lot of support and insights for people who have been through it as well.

There’s in person communities, so yeah, definitely, um, I’m happy to share suggestions, but there’s, yeah, definitely find a group that you can connect with. Whether it’s in person or online, because yeah, they’re going to be there, support you, encourage you, and maybe share things that maybe you didn’t think about, um, as well, you need to ask for or be doing a plan for, for your kids.

This season, I’ve been asking each of my guests to pass on some advice to our listeners through a series of open ended statements. And. Marian and I’ve talked about this. She’s agreed to, to participate in this. So I have four for you if you’re up for that many. Um, so I’m going to read the statement and then I’m going to have you repeat the statement and finish it.

However, you feel led to finish it. So the first one that I have for you is every parent of a special needs child going through a divorce should know that.

Every parent going through a divorce, uh, should know that, We need to think about not just the short term, but the long term. We talked a little bit about that, um, but we need to think about how those will be addressed.

How is it going to affect all the family members and what we can do, um, to make it as amicable a process as possible. that we can, but yes, think of what they call a life care plan for that child. Some people want to think that, you know, divorce is over, child support ends at 18, and then that we’re done.

Well, that’s not really the case because, uh, depending on your state, um, you may have, uh, child support that goes longer than that. There’s, even if you don’t, and some states have indefinite meaning lifelong child support, but even if you don’t, you can still come to an agreement. Um, based on what’s for that child and your family, what’s going to work out.

So hopefully you can plan together and work together to make that happen.

All right. So when a special needs child is involved in a divorce, the most important thing to remember is?

I say the most important thing is to take things slowly. We don’t want to rush ourselves or rush our kids through this and force things upon anybody when they’re not ready.

Um, so. And so, yeah, we talked about how transitioning is hard. So we want to help find ways to help our kids transition, whether it’s through social stories. And by the way, I mentioned earlier, I did create a YouTube video about that. So happy to link that to your resources. That’s how to do that in this divorce situation.

Um, but yeah, so, you know, find ways to give structure to this so that, um, the kids don’t feel like they’re alone or that there’s. That they don’t have anyone to turn to, that there’s ways that we’re all going to get through this together and life will be okay afterwards.

All right. So the third one, the best way to minimize the impact of divorce on a child with special needs is to

The way to minimize the impact is to think about the child first.

We talked a little bit about that. So we want to be as child centered as we can a divorce. We don’t want this to be situation where it’s a win lose or I get my way and you’re going to suffer. And there’s a lot of emotion behind divorce, a lot of reasons for divorce. And so we want to think though, think strategically in all this, what are, what are the effects of decisions and things that we say and do, uh, in the short term, as well as our future relationship.

And how this divorce is going to end up. So there’s, um, there’s a system out there is a person who asked about high conflict earlier. There’s a person from the high conflict Institute has a communication system called BIFF, B I F F. So it stands for brief, informative, friendly, and firm. So we don’t want to get so wrapped up in emotion that we’re just yelling and going on and on and not, um, saying things succinctly, professionally.

Um, so that the other side, uh, also feels respected and heard. So we want to, uh, make sure that everyone, um, shares what they need to share, but do it in a way that is going to promote the discussion and the result that you’re trying to get.

All right. So the final one, no matter how difficult things seem, parents going through a special needs divorce should never give up on.

We never want to give up on your child or on yourself or on your future. All right. So, you know, child may be having a hard time or you may feel like you need to advocate for what your kid is going through or needs. So there’s a lot of times when the parents have different view of the child’s disability and the severity and what that may mean for them.

Uh, sometimes it’s, you know, like you said about the grief, they’re still in the grief cycle and not fully accepting that child’s diagnosis. And so we want to show really, uh, how that, that disability is impacting the child and how we can help that child to get what they need and be, and reach the best of their ability that they can, and so as a, as a parent advocating for a child in divorce, we want to show, uh, the services they need, the people they need, and what those things might cost to effectively advocate, but we want to also look at ourselves and remember that divorce is a finite process.

Some people think it’s, you know, you’re done with divorce and you’re done. Well, yeah, it will end one day. So it may seem like it takes forever. Some, some divorces do take years if there’s a lot of contention involved, but one day it will end and we want to think about our life after divorce. What’s it going to be?

What’s your next step? What new opportunities await for you. And so we want to have that kind of as a guiding light in our divorce. Not to say divorce is the end and things are going to be terrible, but no, we want to get beyond that. And it takes time to heal and get over the emotion of it. And they, some people say it takes up to three years really to fully, um, heal and, and move on.

But, but no, there is an end point in, in your life after divorce can even be better than it was, um, as you’re going through it, even, even more better than you can imagine. I mean, I’m a different person than I was when During my marriage and during my divorce. And so I’m here now, learn from it. And I’m now able to help other people see the opportunities that lay ahead of them as well.

Well said advice there. I appreciate you sharing all of that with us. So before we go, I want to give you a chance to, you mentioned that you are a coach, but tell us more about what you do, what your business is and how they can get in touch with you.

Sure. So, so when I went through my divorce, it took quite a bit of time, quite a bit of money, and quite a bit of emotional stress. And so with the incidence of divorce as high as it is for special needs families, I thought it’s kind of silly for everyone to have to recreate the wheel and go through what I went through. And so I decided, okay, well, I’m going to help other people based on what I’ve learned.

I’m going to take certifications away to do to be effective. Effectively help other people. So I started my company called Special Family Transitions, and I’m now, um, a Certified Special Needs Divorce Coach. So what that means is I’ve gone through the Certified Divorce Coach program, and there’s an extra certification.

That’s a special needs one that I actually help inspire and create as well. So now I’m so glad that there are people out there who understand, who, um, can Connect you with other resources and can actually help, um. Educate and share things with your, the rest of the other members of your team that may or may not be familiar with what we need to do to become successful on a special needs divorce of lots of other certifications to, I even became a mediator recently and a parent coordinator, because I think there’s lots of opportunities for parents to work together.

So as a divorce coach, I have to, uh, pretty much working with one parent to help them advocate and help them support them through the process. But in my other roles, I can have work together with both parents. Um, so say it’s a more amicable situation, like you said, there’s some that are more high conflict and need more help and some where like, okay, this is what we want to do.

Let’s work together to get there. And so I can help facilitate that as well.

I like, I like that option too. And, um, it’d be nice if all families could go through mediation and not have the conflict, but I know reality is sometimes that, that isn’t possible, but, um, but it’s gotta be rewarding to be able to be in that, in that role.

For sure. And I’m also educating other mediators about that other, you know, that those ways to get through the situation didn’t have to be a high conflict situation. Um, you know, once again, it’s about the child’s needs and how can we work on that together? And so, yeah, I’m active. I share information on social media.

Um, and I, uh, also work one on one with, with, with families and also even create a little mini course about how to have success in a special needs divorce. So I’m here no matter what your needs are, I’m here to support you and connect you with resources as well. You asked if I support other people just to share information.

It definitely either reach out to me on social media. Or happy to do a complimentary consultation, let you learn about your situation and share about maybe how I can help as well.

And on social media, which platforms are you on and is your, um, tag Special Family Transitions?

Yes, exactly. I’m Special Family Transitions on all the platforms.

I’m on Facebook is where I’m most active, but I’m also on Instagram. Uh, on YouTube, I have a YouTube channel and I’m even on Tik TOK as well. So yeah, whatever your style is, reach out to me either way. And so, um, yeah, the easiest way probably is to go to my website, which is, uh, www.specialfamilytransitions.com. And over there they can find a contact form, send me an email. And there’s also links to my social media channels there.

Okay. Good. So we’ll, we’ll link your website and, um, your Facebook link and then also your, your YouTube channel because you had mentioned the social stories there. So Mary Ann, thank you for spending the time with me on this.

I have a better understanding now of what families may need to be thinking through.

Sure. Thank you so much, Tonya. I appreciate the opportunity. So just know that, um, no matter what, you’ll be okay and your kids will be okay. And you’re not alone.

I appreciate Mary Ann sharing her knowledge with us today.

If you know of a family facing a possible divorce, please consider sharing this video with them and look for ways you can help support their family. No one wants to go through a divorce, and if you’re in a relationship that can be salvaged, I highly recommend that you check out my interview with Todd and Kristen Evans, and get the support you need to work on strengthening your marriage.

Thanks for joining me today. I’ll see you next time.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Show Notes:Discover how the BELLYFLIES Method can help your child talk about emotions and develop strong coping skills.Are you struggling to understand how to help your child talk about emotions? Does your neurodivergent child experience really BIG emotions? Discover the revolutionary BELLYFLIES Method, a powerful tool designed to help children, especially those with neurodiversity, express their feelings and navigate emotional challenges.

In this insightful podcast episode, join Tonya Wollum as she interviews Cathy Gagliardi, the creator of the BELLYFLIES Method. Learn how this innovative approach can:

Improve communication: Teach your child effective ways to express their emotions.
Build emotional resilience: Equip your child with coping strategies for handling stress and anxiety.
Foster self-awareness: Help your child understand their feelings and needs.
Strengthen parent-child bonds: Create a supportive and understanding environment.

Whether your child has a neurodivergent condition or simply experiences big emotions, the BELLYFLIES Method offers valuable insights and practical tools to empower them and foster emotional well-being. Don’t miss this enlightening episode!

Connect with Cathy:

Website: Bellyfliesmethod.com
Email: cathy@bellyfliesmethod.com

View the BELLYFLIES book on Amazon: https://amzn.to/3ZkPZCU

As an Amazon Associate, I may earn on qualifying purchases.

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Cathy Gagliardi, a children’s author from the Hamilton, Ontario region, discovered the therapeutic power of writing and began letting her words flow onto the page. Inspired by the growing anxieties children face today, Cathy created the YumYum book series. Through lovable characters like YumYum the alligator, her stories address topics like social-emotional challenges and celebrating differences. Cathy’s books empower children with coping strategies and encourage them to shine in their own unique way.

Episode #108: How to Help Your Child Talk About EmotionsDiscover how the BELLYFLIES Method can help your child talk about emotions and develop strong coping skills.###### (Recorded April 24, 2024)

Full Transcript of Interview:

108 final

Tonya: Have you ever felt butterflies in your stomach when you were feeling nervous? Do you think you could explain what that feeling means to a young child? Well, today’s guest, Cathy Gagliardi, a children’s book author from Ontario, knows how important it is to help children learn to communicate their feelings, and has come up with a way to do just that.

Welcome to the Water Prairie Chronicles, a podcast for special needs parents. I’m your host, Tonya Wollum, and I’m glad you’re here.

Cathy and I have been talking together for, I, I thought it had been close to a year. You were saying that you think it was fall of ’23. Um, it seems like we’ve been going back and forth for a while and we met on, through social media, I believe is how we first ran into each other.

I think so. And I saw BELLYFLIES and that caught my attention. And then, um, then we exchanged some emails and I wanted to know more. So before we go any further, can you tell us what BELLYFLIES is all about?

Cathy: Yes, I can. It’s so nice to be here with you. Thank you for having me. Um, BELLYFLIES is butterflies in your stomach.

Many years ago, I had a situation where, um, I was working with an amazing woman, Karen. And, um, we spent the whole day laughing about our kids, talking about them. The next day, I found out that her son had taken his life. And it was devastating. It just blew my mind and I didn’t know how to help her. I didn’t know what to do and how could this happen.

And, um, I went through, uh, so many different emotions as everybody else did. That was in at work there. And I, I went home to my kids and I felt. That there should have been something I could do for her, but I had to be my mom, a mom and you know, take care of my kids and everything. And then when they went to bed and then when I went to bed, I couldn’t sleep.

So I came downstairs and I started, um, putting a pen to paper and writing, which I did often when I couldn’t sleep. So I started writing and I thought, how can I help children when they’re very little? To have tips and techniques as they get older and just keep using them so that, so they’re like ingrained in their brain of what to do when they have emotions and feelings that they can’t control, that they can’t get through.

It just debilitates them. So I wrote a book called BELLYFLIES, and it was with an alligator, who’s a stuffed animal that comes to life, and his friend Billy. And they talk about butterflies in your stomach, and they call them BELLYFLIES. And so there’s tips and techniques for the children to do to overcome and end up with BELLYFLIES.

Mommy, look, I have no more BELLYFLIES and therapists and teachers and schools bought my books and a lot of parents, but I found that there was a missing section. There was something missing and I really needed to get my techniques across or my ideas or my, uh, support across to the parents so that they could help their children.

So from there, I created the BELLYFLIES Method. which has the tips and techniques for the parents to Communicate with their children, the neurodiverse children.

And there’s such a need for that today.

I know.

It, um, it just seems like more and more a lot, a lot of our kids, especially our older kids came through the COVID time and it has affected them in a lot of ways.

But even with social media, there’s just, there’s so many triggers out there with, um, not always some positive environments that our kids can land in.

Right. And they know so much. They have so much information that it’s scary for them.

So you mentioned that you’re focusing on neurodivergent children. And I saw, I saw a note, I don’t know if it was an email that we had with each other or if it was on your website that I saw that you were, um, giving a voice to your neurodivergent children.

Am I remembering that correct?

Yes. It’s, it’s, um, give it, giving children a voice is, um, my main goal, my, a goal that will help to, for them to discuss their emotions and their feelings and their needs. Okay. without, um, confusion, you know, so basically if they’re in school and something happens and they come home and their parents say, how was your day?

And they say, yeah, it was good. Yeah. Or I don’t know, whatever, because it’s so much, it’s such a big thing. Right. And, um, but they don’t, they’re not acting right. They’re not acting as they normally do. And in this case, a child could say, Well, I don’t know what’s wrong with me, something, but I had BELLYFLIES.

So the, that’s cause start a conversation and it could bring them, you know, like, uh, what made you happy today? What made you sad today? And it could bring the answer to them. So yeah, I, I was picked on at school. Eventually that information will get out. And there’s a child’s voice that originally, you it wouldn’t be there.

It just is too much for them to pinpoint. And maybe they don’t even know, because I know sometimes I have feelings that I don’t know what it is. And so that’s what I say, I have BELLYFLIES. And, um, you have to just think about, okay, what brought this out? But a child would not know that they wouldn’t be able to, um, pinpoint.

They may not be able to pinpoint what it is, or they may not be able to communicate it. So when they say, I have BELLYFLIES, you know, okay, this is a great time for a conversation or, uh, let’s sit down and draw or, you know, somehow get the information out of them.

I like your idea of giving them just, even if the child doesn’t say it, maybe a parent being able to ask, would you have some BELLYFLIES?

Yes. Yeah.

Because now you’ve talked about it beforehand. You know what that is.

Yeah. I found that children, um, They were, they were adopting this, I have BELLYFLIES, into their families. And sometimes, um, one boy came up to me and he said, You know, my dad had BELLYFLIES the other day. And I said, Oh, did he tell you that? He says, No, I told him that.

That’s a huge emotional comprehension too, to be able to transfer that to, to what, you know, that not just kids have this feeling, adults can too. We, we gave one example already as far as how, how they can, you can ask on that or, or, you know, being able to talk a little bit. What are some other things that parents can do to kind of help their kids start to talk about these things?

Well, I have the BELLYFLIES method and it’s an acronym, BELLYFLIES is an acronym. I’ll go through that quickly, B is for BELLYFLIES, E is for ENGAGE EMOTIONS, L is for LISTENING, the next L is LOVE, the Y is for YES AND, the F is for FOCUS, LEAD, I is for IMAGINATION, E is for ENCOURAGE, and S is for SENSITIVE.

That’s my BELLYFLIES method in a little nutshell there.

From what you shared, even though we said that we were looking at neurodivergent children, there’s no child that would not benefit from using this method. So, so it’s a tool that parents could use no matter who their child may be and um, could help maybe ease some tension in some families by going, by going through this.

Well, I, I want to go into our advice section, but I want to ask you another question before we get there. And we didn’t talk about this ahead of time, but you have. You have other books too, and one of them, Gonna Build a Boat, and I love the name of that, of that story. I haven’t read it, but I did want to ask you, that book is looking at compassion and inclusion, is that correct?

Am I remembering correctly? Um, how can parents use that book to, um, to teach their children about neurodiversity or embracing differences?

Well, that, that book I dedicated to my father, uh, who passed away, um, after I wrote my BELLYFLIES book. He, thankfully he got to see it and he was so proud, but, um, he, he had a business and he had, Everybody, every kind of person in that business working together.

And I always thought that that was pretty special how he included everybody. And he, um, he, he thought of you as you could do anything you never thought, Oh yeah, you can’t do it. So nevermind you. No, no, no, no. He just built you right up to that. You could do anything. And he built boats. He built catamarans and trimarans.

And I, so I put that in the story and in the story, it shows how people can come together. It shows how to love yourself and how to love each other and how to understand and listen. So there’s a little girl in there that has depression and they understand and they listen and they include her. And then there’s a, uh, a little boy who’s in a wheelchair, doesn’t matter.

You get on the beach and let’s build that boat anyway, and you’re going on it. You know, like everybody, everybody’s included and everybody can do the job, do a job, anything. They could do the job and they can participate together and, um, have the reward of accomplishing something together as a team. And it just, uh, it’s just, it’s a way for everybody to realize that there, the differences are all really, um, stars.

They’re all shiny stars. When you find, I’ve always found when I was growing up that if I found someone who was different in a certain way, it was just like a star shining in my face. I needed to be with them. So, um, I find that, that, that book. Teachers really like that because it includes everybody and it teaches them to work together and, and listen and love and love themselves as well.

Be proud of what they’re doing. And, um, parents too. So I think that, um, that book came out to be more than I ever expected it to be.

I, I like the fact that it has the physical, um, differences represented, because a lot of our kids have a hard time finding themselves in children’s stories. And, um, and so it is nice that you have that.

Just the, the inclusion part of everyone. I speak a lot on inclusion when I go on other podcasts, even, and it, it’s something that we can’t say it enough that, that everyone should be part of. And I liked the way that you’ve done this. They’re not just being. Included on the edges, they’re being brought in and they’re part of building that boat.

Whatever their part is, they’re part of it and um, and that’s, that’s what inclusion is to me.

Yeah. And that it, it truly represents my dad also.

Nice. Nice. What a great role model for you. Oh, so good. Yeah. Thank you. All right. So we’re going to run out of time. So I want to jump into this. Um, we, this listeners, if this is your first time listening, you’re, you’re not aware of this, but I’ve been asking my guests this, this season to leave you with some bits of advice by completing some open ended statements that I’m going to give them.

And Cathy has agreed to do this with me. So I have four of them for her and I’m going to read it and I’m going to have you repeat it and finish it for me. Right. So the first one that I have for you is the most important thing I’ve learned about empowering children with neurodiversity is.

The most important thing I’ve learned about empowering children with neurodiversity is that they have a voice and they want to speak and they need to, and they need to know that they’re, uh, that they can express their feelings and their needs.

And we’re here to listen to them. Um, I think they have to feel like they can move ahead things as well. So, um, not that they’re different, but that they’re special and they’re not alone. So, I, I’ve learned that these people are so special. I mean, everybody I have met is so unique and so special. Um, that I could just see sparks, you know, they’re just growing and blossoming all the time.

Yeah. I want them to know that.

So the second, um, statement that I have for you is, I wish every parent of a special needs child knew that…

Uh, I wish every parent of a I have a special needs child, knew that, that there was help and that they’re not alone and that they are champions. I, I wish that they had the BELLYFLIES Method, um, to guide them and help them and, and, um, uh, but I could mentor them and, and their children.

And, um, just to know that there’s. That they don’t have to be frustrated, like alone, that they, there’s help out there. I know that if I had this BELLYFLIES Method when my children were growing up, man, it would have been very helpful to me.

And it’s true because, you know, parents are just surviving sometimes.

And to have, you know, we, we, we always joke and generations have joked about how there’s, there’s no playbook for being a parent. No one knows how to do this. And if you have more than one child, you know that. It changes from every child anyway. They all need their own little user’s manual to come, to come with them, but we don’t have that.

But to have a guideline like, like you’ve described with the BELLYFLIES Method, it gives you a mental process that you can think through to help yourself calm and to be able to approach things and to help your child be able to respond to communicate too.

Yeah. I think that, um, the parents, um, are needed to calm, be calm because at that same time, the child needs them the most.

So when they’re trying to deal with everything, the child also needs that. So.

And it’s usually just before dinner when everyone’s hungry, everyone’s stressed, everyone’s tired.

Yeah. Everyone wants it right now. Whatever everything is. Yes, anything is. They want it right now. Yes. I know.

All right. So number three.

One thing that surprised me about the impact of my books has been…

Oh, one thing that surprised me about the impact of my books is how, uh, uh, effective the words “I have bellyflies” is. I can’t, I couldn’t believe how it just took off and children were using that and the teachers and parents and therapists and, um, the, the schools, they, they was becoming a saying that, um, they could grasp onto and use that.

And, and my other books, they all have children, um, learning to love themselves most importantly, but everything else as well, um, compassion and, and, um, Growing together and, um, do accomplishing things together and having a little adventure. So yeah, that, that having, being able to say I have BELLYFLIES and then being able to say no more BELLYFLIES, that really surprised me because even though I wrote it for everybody, I didn’t, didn’t really think about my book getting out to everybody.

At that time it was a therapy for myself. And so when it started doing. What it needed to do, get out there. It really surprised me. It made me happy.

All right, so last one. My hope for the future of neurodivergent children is…

My hope for the future for neurodivergent children is that they know that they’re special, that they can live an emotionally healthy life, and they can take techniques that they learn into the future as they grow, and um, that there be less to zero suicides of anybody like that.

Um, hopefully that the neurodivergent children aren’t, aren’t considered, Um, special because we’re all special, but that they’re considered right on the track of a shining star.

Great advice on all of those. Thank you for sharing all of that. Before we go, I want you to, um, tell us, tell our listeners how they can get in touch with you, how they can find out more about the BELLYFLIES Method.

Um, And if you want to tell us about, about the books too, as far as how they can get copies of that.

Okay. Um, firstly, the BELLYFLIES Method. If you go to, um, bellyfliesmethod.com and put in your email address, I will send you three free episodes of the BELLYFLIES Method. and um, that to get you started on helping you out a bit.

And then if you choose to, um, be mentored or have, or have a coaching session through that, through my landing page, you can book an appointment with me. Also, um, if you want to contact me and talk, talk to me, you can reach me at cathy@bellyfliesmethod.com If you, if you just want to see where things are going or, or, uh, how I can help you, please let me know.

And also if you’re, here’s my BELLYFLIES book. Um, yeah, and this is, um, my brother illustrated this one. I illustrated the other ones because he was too busy. But, um, if you are interested in any of my books, um, I would, it would be best if you went to cathy@BellyFliesMethod.Com and I can send you a book with a special message in it.

So we could talk about that even. And I would have to know the names of the children that you want to address it to. So um, so far we’re, we’re looking at having, uh, a newsletter coming out with little tips and, and information. And on the, in the back of my books also, I have, um, little coloring pages. So we’re going to have coloring pages on the newsletters also.

So how many books do you have? I have five and two in Spanish. So there’s seven books.

So if they look up your, your name on Amazon, they can see all of your books there?

Yes. Yes.

So I just want to clarify for our listeners. So what Cathy had shared earlier is, um, price wise, it might be better for you. If you contact her directly, um, you can see the books on Amazon and you can purchase them that way, but send her an email and compare it that way too.

And what she’s offering for you is that she will, um, autograph those books and write them to your child’s name. So, by purchasing them through her through the email you can, you can get it that way. If you buy it on Amazon, you won’t be able to do that. So, um, so you do have the choices, but, but that’s, that’s why she was, um, suggesting that, that you email her about it.

But, um, so they could either email you and ask for the, the list of the books, or they could go in and look at what they have on Amazon. And we’ll link all of that for you so that you can, I’ll at least find one of the books and link it so you can find her author page on Amazon. And then, um, and then we’ll put her email and the BELLYFLIES Method link as well so that you can, can get through with all of that.

So Kathy, thank you. This is, this has been really helpful information. I’m excited about what you’re doing with, with the BELLYFLIES Method. It’ll be, um, it’ll be a household, household. Phrase that, that we’re going to be hearing soon. Oh, I hope so. That would be so great. Thank you for having me. Oh, sure.

I’ve, I’ve enjoyed this. I, I appreciate you, you coming and spending the time and sharing with, with my listeners too.

Oh, me too.

Thanks for joining me today. I wonder how many of us will be using the term BELLYFLIES to describe emotions to kids now. Be sure to check out Cathy’s books. You can find the link to her book, BELLYFLIES, on Amazon in the show notes.

In our next episode, Mary Ann Hughes from Special Family Transitions will join me to talk about some of the complexities involved with divorce when children with disabilities are involved. She has some great tips on how to protect the children and make sure they don’t get lost in the shuffle of adult conflict.

I’ll see you next time.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Show Notes:Mary’s parents faced countless challenges, from discrimination to societal judgment, but they never let it define their lives or limit their dreams.Join us for an inspiring interview with Mary Harper, a psychotherapist, author, and disability advocate. Mary shares her personal experiences growing up with blind parents in the 20th century. Through her captivating storytelling, Mary takes you on a journey of challenges, triumphs, and unwavering love.

Learn about the unique experiences of raising a child with visual impairments, the importance of advocacy and inclusion, and how to foster independence in a child with disabilities. Discover the incredible strength and resilience that can emerge from even the most difficult circumstances.

Mary’s insights offer valuable advice for parents of blind children, providing guidance on overcoming challenges, supporting your child’s development, and creating a positive and inclusive environment.

Don’t miss this powerful and moving story that will leave you inspired and hopeful.

Connect with Mary:

Website: https://www.marypharper.com
Instagram: @mary_p_harper

Working With a Guide Dog: Episode #44

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Mary Pieroni is a happily retired psychotherapist and author of The Sound of Her Voice: My Blind Parents’ Story. A native of Muncie, Indiana, she is a graduate of the University of Virginia and earned her Master’s in Social Work from the University of Houston.

She lives in Houston, Texas, where she rings in a handbell choir, finds new homes for old stuff, and often suffers from Feline Paralysis Syndrome. Her blind cat, Lily, loves to cuddle when she’s not creating mischief. Mary has two adult children and loves being a grandmother.

Episode #107: Can Blind People Be Good Parents? Advice for Parents of Blind ChildrenMary’s parents faced countless challenges, from discrimination to societal judgment, but they never let it define their lives or limit their dreams.###### (Recorded April 11, 2024)

Full Transcript of Interview:

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Show Notes:Inclusion and advocacy are not just words; they are actions that shape our world.This interview delves into the importance of inclusion and advocacy, focusing on personal experiences and practical strategies. Tonya Wollum, the host, and Aaron DeVries, a passionate advocate for inclusion, discuss the challenges and rewards of creating a more inclusive society.

Aaron shares his personal journey as a parent of a child with disabilities, highlighting the barriers he encountered in securing inclusive education and services. He emphasizes the significance of parental advocacy and the need for systemic changes within educational institutions.

Tonya and Aaron explore the practical aspects of inclusion, such as physical accessibility, societal attitudes, and the role of educators in fostering an inclusive environment. They discuss the importance of universal design for learning and the need for accessible communication.

The conversation also highlights the benefits of inclusion for the entire community, fostering diversity, empathy, and a more equitable society. Both Tonya and Aaron emphasize the power of individual advocacy and the importance of collective action in driving change.

Overall, the interview provides valuable insights into the challenges and opportunities for promoting inclusion. It serves as a call to action for individuals and communities to work together towards creating a more just and inclusive world.

Connect with Aaron:

Website: https://theinclusivedad.com/
TEDxUSD: Unlocking Inclusion for People with Disabilities:
- https://youtu.be/WIc2UUmbyC4?feature=shared
TEDxHoracePark: The Power of Inclusion:
- https://youtu.be/5Fj4eIekHe0?feature=shared
The Inclusive Dad podcast:
- https://podcasters.spotify.com/pod/show/theinclusivedad

How to Travel the World with a Wheelchair: Episode #60

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Aaron DeVries is the founder of The Inclusive Dad, an organization whose mission is “Building stronger communities through inclusion.” His commitment to “Inclusion” is evidenced by the tattoo on his left arm. He is the father of two young adults. He was thrust into the world of disabilities and special education after his daughter was diagnosed with epilepsy and cerebral palsy at an early age. He has spent over 15 years advocating for inclusion for his daughter in school and the community. He has served on various boards and committees of disability related organizations. He has given two TEDx talks entitled “The Power of Inclusion” and “Unlocking Inclusion for People with Disabilities.”

Episode #106: The Power of Inclusion and AdvocacyInclusion and advocacy are not just words; they are actions that shape our world.###### (Recorded April 15, 2024)

Full Transcript of Interview:

Tonya: Can you imagine what it might look like if everyone around you felt valued, respected, and included? What would need to change for that to be a reality? I’m talking about no barriers for anyone where diversity is celebrated and differences are embraced. Welcome to the Water Prairie Chronicles, a podcast for special needs parents.

I’m your host, Tonya Wollum, and I’m glad you’re here. Today, we’re exploring the critical topic of inclusion and advocacy. Join us as we discuss the importance of creating a more inclusive society, the challenges faced by individuals with disabilities, and the powerful stories of those who are driving change.

Together, let’s break down barriers, build bridges, and foster a world where equity and equality are the norm. Back again this week is Aaron DeVries. We first met Aaron in our last episode when he told us about his daughter, Cece, and shared some of the stories of parenting a child with epilepsy and cerebral palsy.

Aaron, welcome back to Water Prairie.

Aaron: I’m glad to be back. Thanks for having me back.

So Aaron, today I wanted to talk about inclusion. It’s something that I bill myself as being an advocate for the disabled, but also trying to promote inclusion in the world around us. And when I saw your handle, It, it jumped out at me because I thought this is someone I want to talk to.

I want to find out more about what he’s doing. And so I’ve been, I’ve been really looking forward to having this conversation with you because it’s, it’s just, I, I hear parents talk about how inclusion is so important, but their child never really feels like they’re included. I’ve taught workshops on how teachers and professionals can use role playing to help teach inclusion to their students, their teammates into their classes, but it’s not something that seems to come easily.

There’s always this awkwardness where we’re not sure what we’re really doing. And I’ve kind of concluded that, um, I think a lot of our fears fit into this whenever we aren’t including someone like, like we, we, we feel good about saying that so and so is part of the crowd. They’re part of the outskirts of the crowd. They’re not, They’re not in there having that interaction and being full belonging of what they’re doing.

And, um, and so I’m, I’m curious where, where we’re going to go with this conversation. This is where we’re starting from, but, um, having shared that from my side, I’d like to ask you, why do you feel that inclusion is important to you?

I feel like I’m super passionate about it. I have it. I mean, I don’t know if you’re able to see that, but. I have inclusion tattooed on my arm, so I’m pretty much all in on inclusion. I just, it started for me when, um, Cece was sent across town to like a segregated setting and just subsequently realizing that wasn’t the only option.

And then it just became, I mean, as a parent, I mean, this stuff’s for me, it’s super, it’s emotional. And just, uh, for me, this injustice part of it, like, Why so many years after idea of the law was passed, are we still, you know, segregating people, not having them included just bugs me what in my upbringing or what in my, you know, my life caused me to get to that point, but it’s just not right in my mind.

So just that piece, a lot of it is. We don’t talk about, at least in our community, we don’t talk about stuff like this, what’s happening. I went to visit Cece when she was in first grade, I think, in that segregated setting, and kids were already, you know, folding laundry, and I was like, they’re in first grade, why are we already folding laundry?

I mean, why are they not in math class and reading? We’re already writing them off? Like, they’re not going to be able to do stuff? Why is this happening? So just, That part of it, we need to include them. And the way it’s supposed to work is when you have the meeting for the placement is you’re supposed to start in the general education setting and then work the other way.

In our situation, it seemed to be like Cece had all these ways she qualified for an IEP. So it just kind of jumped somehow to that segregated setting right away, which is not how it’s supposed to work. So just seeing the system not work the way Feel like it’s supposed to be working and, you know, gets that fire going that I want to help first of all, just talk about inclusion to get it out there and then, you know, help for my daughter, make it more, make it a reality as much as possible.

And then further, you know, kids get it, you know, have it for them too. I mean, once we started talking about inclusion, it’s not, it doesn’t just happen in our community where, you know, kids with high needs are, you know, excluded, segregated. So, um, just something that I’m super passionate about.

I’ve noticed too that sometimes depending on, and we’re talking about kids right now, but depending on the child, some have just a natural ability to be able to bridge that gap and to make friends and to, to be friends with kids in that regular classroom, however you want to call it.

Um, But when they’re being, when, when they’re part of the class, they’re part of the class and kids just champion around them. But you have other kids who are just really quiet and shy, or maybe they have a physical hindrance that’s keeping them from being able to join in with the others. And that’s, that’s the child that I feel the most passionate about because we need to help them figure out how to be there.

Either way, both scenarios, the way I’m describing it, It’s the child with the disability who’s having to do all the work to get into the classroom. And I’d love to see it so that our classroom is just stepping back and welcoming them with open arms. Any ideas of how we can help at those young ages, first, second grade even, to help all of the kids see each other as all of the kids and not just the kids?

I mean, I think a lot of it, I mean, it comes down to the adults in our experience, the district doesn’t see inclusion the way I see inclusion. So if you’re starting off already, at that point, it’s harder to get, you know, the inclusion, what I view as inclusion for my daughter, if that’s not even how they see it.

So a lot of it, it feels like adults, how they see the inclusion. The other pieces we have, I mean, I feel like, like universal design for learning, we need to, Start let’s make the curriculum start where it’s accessible for everybody at the beginning instead of this is our curriculum now. We have to modify it.

It just makes it harder and more work. But for Cece, I mean, she’s in a wheelchair. So once we started getting her into the general education, I mean, not every class has a desk in it that a wheelchair can go under. So now you have, you have that situation. Okay. On the IP, she’s in the room. There’s not a desk in all the rooms she can be under.

So now, I mean, she’s in the room, but that’s not inclusion. She’s just in the room. She’s not part of, like you’re saying, part of the class. She can’t have a desk. She doesn’t have a desk next to another student. She’s in the corner. Um, so there’s those pieces, like intentionally, like that should be a planning thing with the school.

I mean, we should have one desk in each room where we can at least, if there’s not a child with a wheelchair, we can at least adjust it if there is. So it’s not more of a What are we going to find a desk? Well, at some point, I think she had a table. She kind of was drug around with her by her para. Um, so she would, so, so, I mean, it just makes it harder.

Cause now she’s the kid going down the hall with the wheelchair. First of all, now she’s dragging, you know, a table behind her. I mean, it’s just a lot of, it’s just about the planning, like the planning and how to do it.

Well and you, you made a good point, the table or the desk shouldn’t be off to the side of the room.

It should be, if the kids are sitting groups of four, it should be one of those four so that, so that they’re there as part of it.

Oh, another story I have to share is like, she was, she was, she like, she loves music. So she was in choir. Um, when, whenever she was able to do it, so there’s like a older, I mean, adult choir in town.

So they have had like a Christmas, I think it was a Christmas concert. Her choir was invited to participate. Well, they had it at a historic theater in town where the. Stage was not accessible by wheelchair in order for her to be able to participate. We had to put a chair on the stage. I had to pick her up out of her wheelchair, carry her up onto the stage, put her in the chair and then get her back off the stage after they were done singing.

So I mean, even, even something like that. I mean, I understand you want to perform in that venue, but. You have a child that’s in a wheelchair. So how do you get them on the stage to participate without their parent having to carry them up there? How do you feel included when you’re, you can’t even get up there without somebody, your dad carrying you on the stage?

Yeah. And is, was there another way maybe they could have had the whole choir was backstage together and then they all came out together. It would have taken a little more work to get set up, but at least then during the performance, you’re not having to be the one that is carried up and carried back down again.

Yeah, no, no one, especially if she’s in her teens, no one at that age wants to have that type of focus on them. They want to be back giggling behind the curtain with the other girls. So, yeah. So, um, how, so, and I know we’ve kind of jumped into this, but it makes sense how our children who have a disability feel included and benefit from inclusion. How does the community around them benefit from that?

The more diverse in my mind, the community is, I mean, if we’re all the same, we’re all. I mean, look like me or act like me, it’s going to be boring. So just having that diversity, having other perspectives, I mean, she’s loves music, she loves saying hi to people.

Just she’s cheerful for sure. For me, like I get bogged down with like worrying about what other people care about me too often. And she, if she’s singing, she just. blares it out and doesn’t care about that. So, I mean, that perspective, a different perspective, I think, you know, she shares, um, for me, the inclusion piece in the community is big because I mean, I’m getting older, I’m not going to be around forever.

So, I mean, I feel there’s going to be a point where, I mean, I’m going to need some other people to help take, you know, look out for her, take care of her in the community. And then by her being in the community earlier on, people know who she is. They recognize her, comfortable coming up, saying hi to her.

Um, if she’s driving her chair into Walmart or something and, you know, there’s something in the way or whatever, helping her around the community. I mean, if I’m not getting her out of the house, out in the community, meeting people, getting them used to her, I mean, that’s not going to happen. So I feel it’s important.

And if, you know, as a parent, some days you’re like, why is, why do I have to do all this? Why is it so much work for me? But that’s, if I don’t do it, it’s not going to happen. So, yeah, you kind of have to just like, it’s not fair. No, but. It just, you just have to do it. And part of why I like to talk about inclusion, you know, it’s just people don’t, you don’t know what you don’t know.

I mean, I don’t, I’ve never had experience with any, you know, my child or anybody close to me, you know, having, I mean, like, uh, like cancer or diabetes. So I don’t know anything about it. I’ve heard the word, but I don’t. I don’t know what it’s like to, you know, go through that, live through that experience. Um, so I feel like part of it is just as a parent, I mean, I need to share, share my story, you know, explain that not every venue we’ve gone to see a music, you know, performance is accessible before we go, you know, to a concert, I check with the place to see what is it accessible?

Yes. I still ask that question, you know, in 2024, because not every place is so.

Right.

It’s just it’s just part of it. I don’t want to get there. And then we can’t get in because, you know, they don’t have a place way to get her in there. So it’s just 1 of those things that. Is it right, fair that I have to do it?

No, but you just, you just do it. Just, it’s just part of what you have to do. So, and by spreading the word of inclusion, I feel like, you know, bringing up, you know, a situation where it wasn’t inclusive. I mean, that just helps other people, you know, I feel like if they see something that’s not inclusive, they’ll question it or bring it up, you know, their business.

You can’t get a wheelchair in there easily or at all. How can we make this so it’s accessible for people in wheelchairs? I mean, that helps. People with strollers or walkers or canes and stuff too. So, I mean, let’s just, you know, get the word out there and spread, you know, that information.

I haven’t thought about this for a long time, but when my daughter, Emily was in probably fourth, fifth grade range, she, um, had a mission that she kind of gave to herself.

And that was to evaluate restaurants all around our area and, um, find out how accessible they were for the blind. And so, and what she was starting to recognize was if she went into McDonald’s or somewhere, she couldn’t read the, the menu. And so she was always going to have to have somebody read it to her, unless she could figure out how to fix this.

And, um, so, you know, as, as a child, her, her goal was, can I evaluate all of these and make a directory so that other people could see this and look ahead of time before I arranged to meet somebody, And then that way I’m not embarrassed. I don’t have to have somebody else have to read it to me. And so I took her wherever she wanted to go.

She talked to managers and asked them, you know, so if I came in, how would you handle this? And she was surprised that I think McDonald’s was the one that actually had it in Braille. So that was Braille. They had large print, they had picture, they had. pretty much everybody. Um, she went into a few places.

They had a large print menu, but unless you knew to ask for it, it didn’t exist. And if you didn’t get the right employee, they didn’t know about it. So it still didn’t exist because no one could get it to you. So, um, she never, never did much with it. And there’s other, there’s apps out there now and all this.

But, um, but it, it taught her a lot and also taught me a lot that it’s not just because things are available, doesn’t mean that it’s going to be available to the person that actually needs it. Because if, if the manager knows about it, like one place she went to, they had everything, but it was inside a sealed envelope in the manager’s office and they had, it had been there for months.

They’d never even opened it. So if a customer came in and asked for it, even if they knew it was supposed to be there, The person that’s taken their order has no idea that they even have it. So it’s, um, so it’s kind of interesting on that, but what you brought up was a good point that I remember now about that, that part of what she was trying to do.

She kept telling them, well, if I can’t read it, what are all the grandparents going to do whenever they come in? Because they can’t see it either. And she had a very good point. You know, it, it does benefit. And, and you, you just mentioned the same thing. We have an aging generation that’s going to need walkers and canes.

And, you know, even if they’re not using it, they need to have a safe way to walk so that they’re not tripping on a stair or something. So it does, it does benefit everybody there. The, um, the other thing I wanted to, to mention for our listeners, If you go back to last season, let’s see if I can see what number it was.

Um, episode 60, we had Kristin Secor on and she is traveling around the world in a wheelchair and she could have been set aside as not important, but even though she needs to have an aid with her and she, she’s needs help doing some of these things. She has a wheelchair and a ventilator and she’s traveling all around the world.

And now she’s leading groups, teaching them how accessible travel can be with modifications. She posts on how to get the accessible housing that you might need. How, how do you get your transportation and all? She’s contributing a lot to a ton of people. And not only just seeing her being able to travel, but she’s now saying, I’ll take your hand and show you how to do it.

And, um, and so Cece has just as much to offer, you know, what is, what is, what is she going to do to leave her imprint on the world around her? But let’s let her do it by including her in society and letting her be part of this. Yeah, so one thing I want to ask, so we talked about the wheelchair ramps and the stage issue, things like that, because especially these older buildings, doorways are narrow.

There’s, there’s a lot of boundaries there. Um, what are some of the biggest barriers that, that you’re noticing any others that are coming to mind besides what you’ve already shared?

I mean, we go for walks around the neighborhood. I mean, there’s still. You know, sidewalks that don’t have curb cuts. I mean, so you’re walking in a neighborhood, get to the end of the block and all of a sudden there is no curb cuts.

So then you got to backtrack. If there’s driveways, you can use those, but otherwise you’re going back or, I mean, to me also hit some of these, you know, residential streets aren’t very wide. So, I mean, you have to go on the side and then if she’s in her wheelchair, like going around cars and getting back over.

So it’s just, you just really have to watch for it. I mean, or there’s, you know, there’s parks that still don’t have, you know, handicapped spots in them. So if we. If there’s a lot of people there, there’s not like a, you know, designated spot for us to park and, uh, park in the van and stuff, which completely blows my mind because ADA was passed in like 90 or something, and we’re talking a long time ago.

So it’s still, I don’t understand it, but, um, those are, those are kind of the main things where it’s just more with her, the wheelchair accessibility stuff where it just. I mean, we went to, to listen to the music at a place we can walk from my house in town and you had to go through the building to go outside to get in the parking lot that was roped off.

And. You go come out the back door and it’s like a, I don’t know, like 6 to 8 inch drop to the thing. Well, the only way to get down there is they had to pull like this wooden ramp that they had somewhere else. Like you’re saying, they have, they have a way to get down there, but it’s not out there. Somebody had to get it and then it’s barely wider than the wheelchair and there’s a hole like in the middle of it.

So you’re like praying it doesn’t, you know what I mean? It’s just, how can we. How can we design this or build it so it’s accessible for everybody all the time? Like you’re saying, instead of it’s in the manager’s office or it’s in our storeroom. And what if this employee doesn’t know what’s even there?

Like, I can’t, she can’t even go, you know, participate in the music. So it’s just getting those, those types of things are kind of the main things right now.

All right. So before we, before we wrap up our, our interview part, I wanted to ask you about, um, to be able to, to give some advice to our, Our listeners and um, so listeners, this is our section where I’m going to give him some open ended statements.

He’s going to repeat them and finish them up for me. So the first one I have for you is the biggest impact we can make on creating a more inclusive world is…

The’ biggest impact we can make on creating a more inclusive world is loving our neighbor. Um, that to me is, um, a big thing. I mean, I grew up in church and that talked about loving your neighbor and just treating other people how you want to be treated.

Um, so I feel like if we treat others in the world, like we want to be treated, it would be more inclusive.

So one small step everyone can take towards fostering inclusion is…

One small step everyone can take towards fostering inclusion is, um, talking with people with disabilities to see how you can include them.

Um, so just talking to them to begin with, asking them, what can I do, you know, to help you, um, be more included. I asked this question to a, um, guy I know and. My town here who was also has cerebral palsy. I’m like Cece and he said, um, just if he’s out in the community, but get a restaurant, um, you know, ask him what he wants to drink or eat instead of asking the person with him because he finds that often, um, If he’s with somebody, they tend to ask the person he’s with, not him, what his opinion is.

And that’s also true for me. Uh, if we go to the doctor, um, you know, the nurse still ask what, what’s your name? What’s your birthday? Um, they often will ask like me or, um, Cece’s mom that information. She knows her birthday. So if they ask me, I’ll say, okay, Cece, what’s your birthday and have her say it. So just, uh, that’s, that’s a pretty big thing.

Just talking to people with disabilities and. Getting their input on how they want to be included or the things they come across.

So that’s it’s a really good point and especially those who are having to use a mobility device like a wheelchair Because unless they have one that lifts up where you’re eye to eye They’re down below you And, um, and as a society, I know I see that time and time again, that we literally look over them and talk to whoever’s near them.

And it’s, it’s not fair to the child, the adult, whoever it is you’re talking to. All right. So the last one is the future feels brighter when I see…

Uh, the future feels brighter when I see, um, people including Cece, my daughter, I’m just where I’m able to have her out in public and, you know, somebody is talking to her.

Yeah. Yeah. Go to church and, you know, she goes sits by somebody else and I can just kind of sit back and, um, you know, enjoy her, you know, having somebody want to talk to her, spend time with her, treat her like she’s just like she’s a person just like them. So that’s gives you that glimmer of hope that.

All the work that’s been done is worth it. And, um, she’s going to be okay.

Tell us a little bit more about The Inclusive Dad.

Uh, so yeah, I started The Inclusive Dad. Um, I love, um, inclusion. I’m passionate about it. So what I do is I do one on one, um, coaching with families, um, to navigate the special education process.

Um, that’s what I’m working on now. Um, I didn’t know anything about inclusion when Cece was born, learned a lot about it and, you know, learned that. Um, it doesn’t, it’s not fair and I don’t like it, but when you have somebody, as a parent, if you have another person there, an advocate, a coach, somebody with you, um, it changes the, changes the dynamic.

Um, I mean, the school seems in our, my experience, um, personal meetings for Cece and others I’ve been in, they just seem to be more on task, seem to be more respectful. Um, that part of it on and Cece, I think I talked a little bit about on the last episode, she qualifies under multiple categories. So the first meeting we went to, but I remember it was before ours, we went to her brother’s, um, like back to, you know, just the back to school meeting.

So it was me, um, my ex wife and my son and the teacher lasted 5 minutes, drop off your stuff. You’re out the door. Go to Cece meeting. It was me, Cece, my ex wife, and at least 10 people, 10 school staff on the other side of the table. Um, so there’s just this, for sure, like, um, you know, children with needs, like my daughter, there’s just the power imbalance just implied is, you know, So just, I like to help families navigate that process, whether you need, uh, you know, help looking at the IEP seeing, um, if you just want input on the IEP can help with that.

If you want somebody to attend a meeting with you also, as a parent, I mean, you’re hearing a lot of stuff. A lot of it, at least from my experience is not. All positive, so it’s emotional having somebody there also, you know, to help listen, catch things, ask questions that you need to, you know, ask. Um, so I offer just one on one coaching.

I also have a monthly membership. Um, different levels of that, um, what’s included in that is like a private membership group, um, where you have access to, you know, ask questions, um, get information, um, then, then you get like a, you get a 15 minute call with me a month, um, included in that membership, just if you have anything you want, have questions about, need to work on, um, we can work on it in that time, uh, once a month, networking calls, so just once a month on zoom where we schedule and just, you know, meet with other parents just to get to know each other.

Okay. Find out, you know, what other things, what you get going on in your life, uh, once a month question and answer calls. So that one’s more focused on, you know, if you have questions, um, that you looking over the IEP, you have a question about something you can, you know, bring that, um, I’ll help answer it.

Other parents can, you know, Hey, yeah, we went through this. This is how we handled it. Here’s a resource that part of it. Um, access to live webinars and recordings and then discounts like on the one on one coaching. If you need more, um, coaching, uh, the next level that includes more, it includes like more hours of coaching.

So, you know, you have more of a complex, um, need more than just the 15 minute call a month or those other calls. Um, you can add stuff to that. Like my daughter or Cece’s. I mean, we had evaluation reports that were probably 75 pages. I mean, we had IEPs that were 30, 40 pages for our IEP meetings. So some of our stuff got pretty intense.

So I just want to be there, help other families, you know, through that process. Big picture. I mean, I want to make the whole. society world more inclusive. Um, so trying to figure out how to best tackle that part of it. Haven’t figured that out yet, but I’m just, just the awareness piece. Um, I’ve given one TEDx talk on inclusion.

Um, well. Two days from now, I’m doing my second TedX talk. So that will be probably out there maybe before this is this episode is published. But so yeah, just getting out there and spreading my message.

Well, Aaron, I’ve enjoyed this. I enjoyed, um, hearing about your story last week. Um, hearing more about just talking about inclusion.

I think the more that we talk about this, the more other parents will realize that they do have a voice, not only just for their own child, but for reaching beyond their family and helping for that next generation, even coming behind us. So thank, thank you for sharing this and joining me for, for both of these episodes.

Yeah. Thank you very much. I really enjoyed it.

Thanks for joining me today. I hope this conversation has inspired you to learn more about inclusion, advocacy, and the power of individual action. Be sure to visit our Etsy shop for creative writing resources that foster empathy, understanding, and a love of storytelling.

Our offerings include creative writing journals for kids, interactive story kits, and digital downloads for teachers and homeschool parents. By supporting Water Prairie, you’re not only investing in quality educational materials, but also contributing to a more inclusive and compassionate society. Visit our Etsy shop today at https://waterprairie.etsy.com. Be sure to join me for the next episode with my guest, Mary Harper, the author of the book, “The Sound of Her Voice, My Blind Parent’s Story.” Her parents were successful adults who found genius ways to work around the discriminations of their time period. And I think you’ll enjoy meeting Mary.

I’ll see you next time.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Show Notes:Advocating for inclusion and understanding is essential when you’re parenting a child with epilepsy and cerebral palsy.Join us as we follow Cece’s inspiring story of resilience and determination. Learn about the challenges and triumphs of parenting a child with epilepsy and cerebral palsy. Discover practical tips, valuable resources, and the emotional impact of this journey.

This video features an exclusive interview with Aaron DeVries, the founder of The Inclusive Dad, who shares his personal experiences and insights.

Don’t miss this powerful and uplifting story that will leave you inspired and empowered.

Connect with Aaron:

Website: https://theinclusivedad.com/
TEDxUSD: Unlocking Inclusion for People with Disabilities:
- https://youtu.be/WIc2UUmbyC4?feature=shared
TEDxHoracePark: The Power of Inclusion:
- https://youtu.be/5Fj4eIekHe0?feature=shared

Epilepsy Foundation of Minnesota: https://www.epilepsyfoundationmn.org/

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Episode #105: Parenting a Child with Epilepsy and Cerebral PalsyAdvocating for inclusion and understanding is essential when you’re parenting a child with epilepsy and cerebral palsy.###### (Recorded April 15, 2024)

Full Transcript of Interview:

Aaron: It’s not the most fun advocating for your child, but I always, it’s my daughter. If I notice it, I’m going to ask a question. It’s just going to happen.

Tonya: What does it mean to parent a child with disabilities? How do you balance the emotional rollercoaster with the relentless pursuit of inclusion? Welcome to the Water Prairie Chronicles, a podcast for special needs parents.

I’m your host, Tonya Wollum, and I’m glad you’re here today. I’m joined by Aaron DeVries, the founder of The Inclusive Dad. Aaron is a passionate advocate for inclusion and the father of a young adult with disabilities. In this episode, we’ll delve into his experiences, parenting a child with epilepsy and cerebral palsy, his journey advocating for inclusion and his insights into the emotional impact of raising a child with special needs.

Um, I have a 20, I think, yeah, she’s a 22 year old daughter, her name is Cecilia, we call her Cece. Um, at three months old, she was diagnosed with, um, epilepsy, um, her aunts who are nurses noticed her having seizures, took her to the Mayo Clinic, which is close to where we live in Minnesota, and she was diagnosed with, um, epilepsy.

Um, subsequent to that, she was diagnosed with cerebral palsy. Um, so that’s, and so she’s now 22. Like I said, um, she’s been on seizure medication since that time, um, taking them every day, um, and she uses a wheelchair to get around, to navigate the world, so that’s just a brief.

Aaron’s daughter, Cece, was diagnosed with epilepsy and cerebral palsy at just three months old.

The unexpected news brought a wave of emotions and challenges for Aaron and his family. Even though they weren’t first time parents, Aaron and his wife were unaware of Cece’s seizures until her aunts, who were nurses, noticed the unusual behavior.

Her mom and I didn’t notice anything, but we went to a Christmas, um, that, she was born in October and went to Christmas in December.

Um, she has two aunts who were nurses at Mayo Clinic and noticed she was like staring off to the side. Um, so they noticed that, um, the behavior that she was exhibiting. And then we just took her in to get checked out and subsequently, you know, had all the tests done, um, EEGs and stuff, which showed that, um, she was having seizures.

So we, we personally didn’t notice anything. It was her aunts who had noticed it and led us down that path of getting it diagnosed.

As Cece grew older, Aaron faced the challenge of advocating for her inclusion in general education classrooms. Despite initial setbacks, he persisted in ensuring she received the appropriate support and resources

In the IEP, she qualifies as like severely multiply impaired, I think is the language ’cause she meets it under tons of categories. Um, so, so they, you know, they recommended she go to the segregated, um, self contained classroom across town. Um, we agreed to it because, I mean, that’s, we didn’t know any better subsequently found out about. And then after that, try to get her back into the general education, a hundred percent, which, um, other parents probably know this too.

Once you’re kind of in the special education segregated path, it’s super hard to get back. At least our experience was, it’s hard to get back into the general ed. So there seemed to be hoops that were there that aren’t there if you’re just in general ed. Like you have to prove stuff. More stuff to get back in than just whatever.

So so that was kind of the path we took. By the time she got into high school, I mean, she was, I think, maybe 1 or 2 periods she was not in general education. Otherwise, for the most part, she was in the general education class. So that’s kind of the path that ended up happening for us.

To accommodate Cece’s needs, the school provided modified curriculum and one on one support, ensuring she could participate fully in the classroom.

I mean, as long as I can remember, she had a one to one pair with her. A lot of it was to do with the seizure part of it, just to like be there and be able to watch for the seizures. Um, being able to administer the meds if she needed it, because that’s the piece with the epilepsy, the seizure part is she also, in addition to the IEP, had a, like a health plan, a seizure plan in place.

So, um, she took her noon meds at school. So they, I mean, you have to have the paperwork in place to go to the nurse’s office. Get the meds. Them to administer like the, you know, the rescue medication if she’s having a grand mal. So every year we would have the Epilepsy Foundation of Minnesota would come in and do training with the nurse and the school staff just to get everybody on the same page about, you know, this is standard.

You know, seizure first aid and then like, I mean, this is what Cece how hers presents. So, you know, this happens, you need to follow this procedure and that kind of thing. So there’s in addition to like the IEP part of it, like I said, there’s also is the seizure pieces that we had to have in place to make sure she was safe at school.

Parenting a child with special needs can be emotionally demanding. Listen as Aaron shares his experiences navigating the ups and downs of this journey.

I didn’t remember seeing anybody with a disability growing up. Had no experience with it. So it was all like new stuff for me. You know, just trying to figure out what’s happening.

I mean, I kind of, my approach was, I mean, you know, she’s my daughter. And I mean, we’re just, I’m just going to do what I need to do to, you know, to, you know, support, keep her safe, support her, get her the help she needs. Um, that was kind of my approach to it. Um, so it was just a lot of, like you said though, we had two little kids.

Um, Cece always from when she was young, you know, wanted me to be, you know, like have her take care of her. So I kind of took more of the role of, I mean, I was working, um, my ex wife. She stayed home with the kids. So I mean, when I came home, I’d be, I would want to, you know, help her out, you know, and you know, take over the parenting thing to give her a break.

So it was a lot of, you know, spending a lot of time with Cece. Keeping her, um, you know, having fun with her. I mean, lots of doctor appointments we did right. The Mayo Clinic got that diagnosis, um, trying to figure out there was a period of time where, you know, you do all the testing, like genetic testing, all the testing to try to figure out.

Right.

What, what caused it? There was never, we never got an answer. Um, like I said, the pregnancy was normal. Um, the birth was a repeat C section. So no, I mean, everything was normal. So there was nothing to like pinpoint what happened. Um, the scans showed that she had, um, extra like water in places of her brain where it should have been tissue.

So, um, the scan can see that, but there’s, like I said, there’s never been, we never had a solid answer to what, you know, caused it, which, um, for me, I mean, it’s, I mean, we tried to figure it out, didn’t, and I just accepted that as like, you know, she’s, she is my daughter. She is who she is.

It’s important to note that connecting with other parents who have similar experiences can provide invaluable support and understanding.

She’s still in the transition program. Um, so when she turns 22 in October of this year, then she will be done.

As Cece prepares to transition from school, Aaron and his family are exploring various options for her future, including vocational rehabilitation and community based activities.

Currently, she goes to school for, I think, like an hour and a half a day, and then she goes and works at the library, um, like there, so she, she loves that.

Um, I think we’re hopefully maybe continue that and maybe find some other type of volunteering employment she can have in the community.

We didn’t discuss specific transition planning strategies in the interview. However, it’s important to consider the following steps for a child Cece’s age.

Develop a comprehensive plan outlining goals, services, and supports needed for successful transition.

Collaborate with educators, therapists, family members, and community providers to ensure a coordinated approach.

Research vocational training programs, job placement services, and supported employment opportunities.

Focus on developing daily living skills such as personal care, transportation, and budgeting.

Offer ongoing emotional support and guidance to help your child navigate the transition process.

This season, what I’ve been doing is asking each of my guests to share some advice for our listeners through a series of open ended statements that I’m going to give. So, um, so Aaron has agreed to, to play along with this with us.

So the first one is, the best advice I’ve ever been given as a parent of a child with a disability is…

The best advice I’ve ever been given as a parent of a child with a disability is take time to enjoy the little things. Um, I mean, with. Cece’s needs. I mean, it’s 24 seven. I’m helping her out, you know, daily living tests.

So just those moments she loves music. So those moments when we’re listening to music, she’s just singing her heart out and kind of everything disappears. Just take time to, you know, enjoy those moments, wherever they are for your child, where you can just kind of forget about the day to day stuff and just live in the moment.

Second one, I wish I had known this, or I wish I had known blank about epilepsy and cerebral palsy when my daughter was first diagnosed…

What I wish I would have known right away is that we weren’t alone. Um, there’s others, others going through similar things. I mentioned like the Epilepsy Foundation of Minnesota.

Um, for us, for our family, that was really awesome. Um, we got used to having to like, go to doctor appointments and explaining everything happening over and over again, or every, you know, telling the same story. It was nice just to have a place where you could show up and just be around other families, not have to explain the whole thing and just, you knew that everybody in the room was going through similar stuff.

So that was, you know, that was a big help to finally figure out like, hey, there’s other people doing this. We’re not doing it all by ourselves.

And then the last one is the most important thing I’ve learned about advocating for my child is…

The most important thing I’ve learned about advocating for my child is, I mean, sometimes it’s, I mean, it can be kind of uncomfortable.

Um, I have more than one story where, um, she was having seizures to the point of, I mean, I, I got, it got to be where I would come home from work, she was in the ER, I would walk to the door of the ER and they would just point to the room, didn’t even have to ask my name. Um, so I was, I was to a point where, you know, I was kind of desensitized to it.

So I was able to pay attention. Um, so there was one time when she was having a grand mal’s 90 minute seizure, where they got the medication, were going to put it into the IV line. And. The doctor said, well, we have to do it over let’s just, I think it was five minutes. We have to do it slowly. Otherwise it’s going to burn her veins.

Well, another time after that, we were there, they got the med, um, stuck it in the IV and just pushed the plunger. So I’m like, hold on a second. I’m like, what just happened? Cause like the last time this happened, you just did this. So somebody needs to explain to me what just happened. So, I mean, for me, I was like desensitized to the, stuff that was happening, I was able to pay attention.

So just sometimes, and that’s not comfortable because most doctors I’ve met, they don’t like being questioned. So sometimes it’s not the most fun advocating for your child, but I always, it’s my daughter. I mean, if I notice it, I’m going to ask a question. I mean, it’s just going to happen.

Before we finish, share with us how listeners can get in touch with you if they have any questions for you and um, anything that, that you’re working on right now that you want to share about.

If you want to get a hold of me, uh, go to my website, The Inclusive Dad, or you can use the QR code on the screen goes to my link tree with my social media and those things on there. So you can reach out to me that way. Um, currently I help parents one on one coaching through helping coach through the special education process.

Um, we’ve got a monthly membership as an option where there’s a couple of calls a month, um, that are included, um, like a question and answer one and another mastermind call just to, you know, have support for each other, walk each other down this journey. So that’s how you can reach out to me and how you can work with me.

Thank you for being here today. I appreciate you sharing about your life and, and Cece’s life. And I’m, I’m sure there are families who are going to benefit from hearing this.

Thank you. Thank you for having me.

I hope this conversation has provided you with valuable insight, support, and inspiration, and left you with a better understanding of parenting a child with epilepsy and cerebral palsy.

To stay connected and receive more resources, visit I encourage you to sign up for the Water Prairie newsletter at https://waterprairie.com/newsletter. You’ll get updates on upcoming episodes, exclusive content, and valuable information for parents of special needs children. Join me next time when I continue talking with Aaron about his work with The Inclusive Dad.

Together we can create a brighter future for our children and build a more inclusive world. I’ll see you next time.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Limited Speech and Communication ChallengesShow Notes:Beyond Words: A Heartfelt Conversation About Parenthood and Limited SpeechJoin us for a powerful and inspiring conversation with filmmaker Jay Silverman. In this episode of the Water Prairie Chronicles, Jay opens up about his personal journey as a parent to a daughter with limited speech. With raw honesty and vulnerability, he shares the challenges, triumphs, and unwavering love that have shaped his family.

Discover how Jay’s experiences as a parent influenced his latest film, “CAMERA,” a moving portrayal of a young boy who finds solace and expression through photography. We delve into the importance of representation, the impact of disability on families, and the power of storytelling to create empathy and understanding.

This episode is a must-watch for parents, caregivers, and anyone interested in human connection. Get ready to be inspired by Jay’s story and the strength of the human spirit.

During the interview, Jay spoke about the film CODA, which is about a deaf family. The original script of ‘CAMERA’ was written about a deaf boy so they changed it to be about a mute boy in order not to be similar to the film, CODA. The decision was also because Jay wanted to make it more personal and use his daughter’s story.

Connect with Jay:

Website: https://jaysilvermanproductions.com
Watch CAMERA on Prime: https://amzn.to/4dj2Bib
- Watch the Trailer for CAMERA

** As an Amazon Associate, I earn from qualifying purchases.

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

For over 40 years, Jay Silverman has excelled as a leading Director and Photographer specializing in award-winning television, digital, and print campaigns; Jay’s current dramatic feature ‘Camera’, stars Beau Bridges, Jessica Parker Kennedy, Scotty Tovar, Bruce Davison, and Miguel Gabriel. It will be released on Amazon and Apple TV on July 23rd, 2024. Other films include “Girl on the Edge”, “Off the Menu” and “Saving Paradise”.

Episode #104: How to Understand and Support Children with Limited Speech | CAMERA, the MovieLimited Speech and Communication Challenges###### (Recorded July 30, 2024)

Full Transcript of Interview:

Tonya: Jay, welcome to Water Prairie.

Jay: Thank you so much. Uh, you know, I want to just say, Tonya, out of all the podcasts I’ve done for my movie, this is the one I look most forward to. So thank you for having me on.

I thought what we do is we break the interview, start with talking about your, your life as a parent, that role as a parent first, and then we’ll move into, to talking about the movie more. So listeners stay with us. You’re going to want to hear all of this because it’s going to make the movie even more impactful to you after hearing this part of his story.

So you have how, how many children,

three,

three, and, um, are they all, all girls or do you have boys and girls?

They’re all girls, 26 to 30.

One of your daughters has limited speech or had or has, is it still as an ongoing condition?

She’s now 27 years old and she is, um, figured out a way to work around her low voice and her sometimes whisper.

Because of damage that was done at birth by the Uh, intubation process that was excessively done to the point where her vocal cords were compromised by scar tissue.

How common is that to happen? Do you know?

It’s so interesting you just said that because I just went for a procedure unrelated to any of this.

And the nurse, uh, who was helping me, for some reason, my Life story came up to her and I told her about my daughter being less than two pounds at birth in the NICU. Oh, I know how it came up. She said to me, I’m a NICU. I come from the NICU and, um, uh, I no longer work in that world now. Now I’m doing what you’re here to have me do.

And, um, and I said, You know, I have a lot of familial familiarity with NICUs. My daughter was in it for almost six months and she, she had a tracheostomy. She had, um, all sorts of remarkable procedures 27 years ago. And now she’s, uh, she’s almost as tall as I am and she’s just a magnificent spirit.

But, you know, I am talking to an audience of parents here, I have to share with you, you know, my daughter worked at a retail store during the summer during the pandemic, and she wore a mask and people would say, you’ve got a cold, young lady, why are you working? And she would have to say, no, this is my normal voice.

And I use this story because it was essentially, you know, adult bullying is basically what it was. And rather than label it, let’s just talk about the side effects. My daughter was devastated because every day somebody attacked her verbally. With, um, uh, stories like I just described. And that’s a part of what I’ve interpreted in some respect or extrapolated in my movie, CAMERA, because CAMERA is featuring a young boy that is mute.

And it’s for the same reasons? Or do we know that?

Exact same reasons, as a matter of fact, when you watch the movie, the little child, um, in photography was actually my daughter, uh, where my wedding ring was on her wrist. So you can just imagine how small that child was.

I’ve seen the movie. We’re going to get into this more. Phenomenal movie, by the way, I thoroughly enjoyed it.

The, um, but I want to make sure that we’re not having too many spoilers here. So, so if I ask a question that you shouldn’t answer, please say that. I was wondering about, about that picture at the end, um, on it. So, um, so that’s, that has even more meaning to me now.

I want to elaborate on something you just said. The writer who wrote this movie is as a gentleman named Jamie Murphy. He wrote it. Uh, he’s from Ireland. And, um, we put a lot of love and a lot of care into this film, but I’m only sharing this with your audience because these are the, the, the challenges and the opportunities for filmmakers. In this particular case, his movie was written for a mute and because, you know, literally at the same time we were developing this movie, Coda, came out.

I, uh, I immediately said I, I can’t, you know, I love the story, but I would have to modify the character and he was totally up for that. I did not want to cast in my movie, a child that wasn’t familiar with the disability of having challenges with his speech, and the young boy in my movie, uh, named Miguel Gabriel, uh, himself actually had speech issues when he was younger and he had to seek therapeutic, um, solutions and he had to seek a, you know, an acting coach and it’s, it’s basically, it takes, it takes a village, you know, his mother was, predominantly engaged.

Her name was Michelle. And, but when you watch my movie and this is not a brag, this is a reality that everybody seems to, uh, kind of, uh, compliment is this little boy is so extraordinary because he has an ability. To express himself without using words in a way that is not just, you know, um, can you make a, uh, an expression of this?

Can you make an expression of that? But storytelling, you know? Um, so I just want to say it was important for me to a understand disability that my daughter had, because this character we made have the identical, um, challenge at birth. He, it’s she, the character even states that her son was three months premature.

You know, um, all you have to do is talk to a group of parents that have had a child that’s premature and they will. Unload the identical same stories, you know, I mean, as a parent, I can tell you that is vital to a filmmaker, whether it be myself or me interviewing somebody that actually lived it, because you don’t want to make a movie that’s not authentic.

Absolutely. Absolutely. And it’s in, in this one it’s the first time that I had even heard that that was a possibility. You know, I think of kids surviving the, the NICU and all the, you know, you, you picture the picture of them having all the wires and the. Tubes and everything, but, and it makes perfect sense, but I never thought about this being a possible, um, scarring that, that, that could happen.

So, so Tonya, I have to say the woman that I mentioned a couple of minutes ago, that was the, uh, the NICU nurse, when I explained to her what happened to my daughter and believe me, you know, um, um, And I say this as a man and my ex-wife who, you know, we share this child coming into the world. I mean, I have to say, nobody could imagine to confront what a parent goes through when your child comes three months premature.

And to have her say to me, this NICU nurse, I saw it happen all the time. Just blew me away because the hospital made a choice to use young intern, uh, students, you know, to essentially watch over the young NICU patients. And my daughter, and it’s, you know, it’s part of her story, would always rip the tube out of her mouth at, you know, At one week, at two weeks, and they have to re-intubate her.

So don’t get me wrong, I don’t necessarily believe that, uh, things happen for a reason, you know? I mean, certainly, they’re not telling my daughter to rip it out. They had her taped here, and they had her taped here. But she was so strong of what a will to wanna live that. Um, she kept ripping out, you know, the only thing that’s saving her life.

And, um, so they had to immediately, you know, re-intubate her. And, you know, I witnessed this and I have to tell you, sometimes it took ’em two, three minutes to put that tube back in her, in her throat. And, you know, each time they’re doing it, they’re scraping her. Vocal cords and over time, and I’m talking about, you know, she was in the NICU for a long time.

You, uh, build up, uh, a, uh, scar tissue and essentially, uh, damaged the vocal cords. And that’s what happened to her. So that, that was our protagonist kind of backstory.

So with your daughter, you knew, well, well, how, how early did you know that damage had been done? Was it later?

A year later.

Okay. So when she would have been starting to babble and, and talking some, as she was growing up, were there areas where you saw significant changes in improvement or breakthroughs in communication for her?

Was it a gradual change?

Look, you know, we, we, we all are made of our life experiences and she’s a tough, she’s a super tough cookie. And, and you asked the question, you know, it takes two, it takes a physician and it also takes the patient to want to help themselves. And my daughter was so incredibly stubborn that it wasn’t until later in life that she actually understood what, why, you know, speech therapy was so critical because.

Much of that comes from, you know, your ability to breathe and gain no different than if you’re training to be an opera singer.

Exactly. I was thinking, I was thinking of that, that comparison with singing, you have to have the breath to be able to support the sound. I was a quiet child. Um, I was very bashful, very shy and, and just insecure.

And so my mom, my mom talks about how I would cry if you just looked at me and, um, It wasn’t until the teen years that we, we had to move during that time and I was ready to move on and become who I was and, and leave that behind. Had we not moved, I don’t know how long that would have taken for me to kind of come out of my shell, but I can remember frustrating my mom because she couldn’t hear what I would say.

And then, so she would get louder asking me to repeat and I would get quieter and as a result of it. And so it wasn’t always a good match there. Um, and then I would end up crying because my feelings would be hurt. You know.

Yeah, but you see, it’s a magical, uh, thing to reflect back on what you just said, because not only, you know, too apparent for you to hear that, You know, I’m cognizant of the pros and the cons of some of the things I’ve done as a parent, you know, um, there’s only, um, it does take two and you know, I, I have to say as a, as a parent of, of, uh, Children, you know, there, there are just magnificent moments, um, that I believe why your listeners listen, where they get wisdom or they get an inclination to understand, you know, my goodness, this is my story.

You know, I just watched an independent film on Netflix last week. It’s called, almost, I was, uh, I Used to Be Famous was the name of the movie. It’s an independent film, but it’s about a child that’s, um, on the spectrum that is very, very, um, But really, in my opinion, as a parent watching this movie, I learned more from the mother.

And what did I learn? I learned exactly the sacrifices that parents have to make, whether you’re conscious of it or unconscious of it. Because conceptually, overprotective parents of children with challenges are in many cases, detrimental because the kid just like you, you wanted to be heard. But when she repeated to you, um, uh, the question or what have you twice as loud, you were intimidated.

You kind of closed down and we’re not taught as parents how to wrangle, um, you know, this kind of, uh, challenge. And so That’s why I make movies because these, these pivotal kind of pinnacle moments in human behavior that, um, that escape all of us in day to day.

When as parents, you know, we, we all want the best for our child.

You know, they’re, they’re born our goal. We were already dreaming about what they’re going to be as an adult and our job as parents, those first 20 ish years is to get them ready for that leap. To be independent and to be, to be out there. And some of our listeners will be sending their child, their child to a group home setting or some type of extra support.

Others will be sending them out, out the door. It may take them a little bit longer to get there, but they’re going to be out on their own. They’re going to be independent. Um, you know, totally without our support anymore. If we’ve done our job right there, they’re ready. As parents, we, we stress on this.

their, their whole lives and after they’re gone. Cause I’m, I’m at the stage now where in the next few years, my kids will be finished with college. They’ll be hopefully out there starting to prepare to take care of me one day. So we’ll just flip it around in a while. But, um, but there’s, there’s a lot of questions, you know, that we have is, you know, did we do it right?

Did we, did we miss something really crucial when they were five that’s going to show up later? You know, and I think we all, we all worry about that cause we want to have the best for our kids. But, um, I talk a lot about how the stage that Steve and I are in right now is we’re, we’re coaches, you know, we can, we can cheer them on from the sideline, but we can’t get out there and play the game with them anymore.

So, um, so if we’ve given them all the, all the right plays, then they’re going to be ready, but they, they sometimes call an audible and it’s not the same play that we had And we’ll regroup as a family and we’ll, we’ll talk about it. They’ll, they’ll text us or call and we’ll, we’ll kind of strategize with some ideas they might could try next time.

Um, but it is, it is hard sometimes.

I want to ask you a question. Um, there’s a description of, uh, cause I made a mistake. Um, and I, and I want to share this because it’s indicative of the world we’re living in. Uh, we were calling charities cause we want to do. Beau Bridges is a big star. We have a great cast and a great message film.

It’s a drama. And we wanted to have, um, screenings all around the country, uh, with charities where, you know, we don’t make a penny, all the money goes to the charity. And I called this big charity in, in Manhattan and I don’t want to name its name, but whoever answered the phone confronted me, you don’t even know what you’re talking about, because I said, you know, my, uh, My movie’s about a child, a non-speaking child.

She goes, that’s not at all what you’re describing. You’re wrong. Your child, you know, to have a child with a speech issue is a different terminology. So you don’t even know what you’re talking about. And, and I thought, wow. Um, That’s important. You know, this idea that I’m using the right descriptives and the right terminology.

Sure. I respect that. She, basically, that was it. We were done talking. Um, and she and her charity or that charity lost an incredible opportunity to share, uh, with their community. Um. But, but this kind of stuff bothers me greatly because we’re all different.

As parents, we should be supporting each other no matter what the reason is.

You and I have kids with different types of, of needs of call it disabilities, whatever you want to call it, but we can still talk to each other civilly and we can encourage each other for the stage that we’re in right now. But I hear it time and time again, where we kind of beat each other and we should be a community for each other.

So, so I think when you call the organization that may have been part of what you were working through, that may be the reason for the boy not being able to speak in the movie may not have matched what their reason would be. And this person may not have been able to connect the two.

Yeah. But you see, that’s, that was the beauty of the story I gave you, I think, before we went on air, which was the fact that these women came to my screening and were mesmerized by the story because number one, their parents have children with challenges.

And I didn’t, and from their mouths to my ears, they said, Hey, we don’t care what the disability is or the, the, the challenge. All we care about is the journey because we all want to inspire our young children to, you know, to learn. I mean, even in my own life, cause I tell you, my movies are a reflection indirectly of me, um, uh, in my life when I was 15 years old and I was in photography school.

I’m not ashamed to admit it. I was, uh, I was introverted. Um, I wasn’t the best communicator verbally and frankly, um, learning that a camera can help me extrapolate my feelings, whether it be storytelling or just grabbing something that created interest was a tool that I use. Not unlike the character in my movie.

Uh, the young boy uses his camera as a communication vehicle.

Well, I, I want to talk about the movie some, so the, the character that Beau Bridge’s plays, he’s the glue that’s holding that whole story together. It’s it’s like everyone needs someone like that in their community. It’s just, it was, it was well portrayed, but I really, I felt like he’s, he’s what pulled everything together there.

And um, but there were some moments of distress that I watched the interactions with the main characters and. The ending of it kind of, it’s like everything wrapped around. So, so it kept my interest the whole way through to the very last moment of it. And, um, and in fact, whenever it ended, my husband and I both were sitting there for a few minutes, cause we were just kind of digesting what we had just seen and it really was impactful to us.

So it, so, and I’m not just saying that I really, it’s rare that I don’t start fading out during part of a movie or something, and then come back in and try to put it all together. This, this, this one kept, kept my attention all the way through. And, um, but the, um, I was surprised at, early on, you used a word that has a lot of controversy going on right now.

And it was, it was using the, the R word.

Oh, I mean, I, He was being bullied. Yeah. Yeah.

Yeah. And so one thing that I wondered when I was watching that, knowing that I was going to be able to talk to you, how do you decide when you’re looking at a script and you know, something like that is going to be a huge trigger for some of our audience, especially how do you decide when to leave it in?

Because the time period, the era that the movie’s taken place in would have been more likely to have used it than it would be today. Or when you take it out because of the audience today watching it, how do you make that choice?

It’s a pretty, um, important thing. Um, I’ll use an illustration, you know, when you make a movie and this movie was never designed to be quote unquote, a family movie, it was, it’s a drama, you know, about a family, um, You know, so, um, just to start this out, you know, I removed all the F words, okay?

Because, and, and if you ever watch any content out of the UK or Ireland, you know, the F word is just part of the vernacular. In United States, in Canada, you know, it requires a little more. Those are easy decisions to make. We left the R word in there because of ignorance. You know, uh, children, um, are vehicles of their own parents.

Um, I think it would be, um, It’s a compliment that you’re bringing this up because frankly, uh, if you said to the guy, I hate your hair or, you know, you’re ugly or, you know, you’re a dope, it’s not as effective. And, and I don’t want to be politically correct in a scenario where the child is getting legitimately, you know, I mean, let’s be honest in the movie.

The bully calls him a pedophile, you know, I mean, uh, you know, these are words that are part of the vernacular on TikTok on all the Instagram on these mediums that the children get educated and to me. You know, um, uh, I think it’s just super important to, to not, uh, sugarcoat a message, uh, with, uh, perfection, because life is not perfect.

That’s what makes movies so extraordinary for me, because it’s a wake-up call. You, you realize, human beings are just cruel to others. That’s kind of why, uh, we left that in the movie. Because guess what? It’s, it’s, it’s not only horrible, but it represents such ignorance.

It does get your attention. It shows, in a very quick scene, the situation that is happening.

And so it, it, it was effective. I was just curious how you make that choice. Um, you know, there, there are a lot of things we, before we started recording, we were talking about, um, there’s phrases that, you know, there, there’s, there’s arguments on both sides, whether we use special needs or disability. When I, when I first started the podcast, I was trying to figure out how do I, how do I have just, what are my talking points?

My elevator speech, what am I going to use? And so I took it to the disability community on Reddit. and put it in several different ones to ask for input. And it was split 50, 50, which, which one I should use. So I use them both interchangeably. I don’t mean a negative to anyone by using either either phrase, but it depends on the situation of how I’m talking.

Um, you also have, um, when I’ve gone into communities asking, is it better to say an autistic adult or an adult with autism? Again, it’s split. Okay. And for different reasons, it’s split. So, you know, I apologize all the time. I never mean to offend. If I do, but, um, it’s not, it’s not meant for a negative way.

It’s meant because it’s my understanding of the most respectful at the time.

There was a movie that was made in the, I think the seventies that addressed this entire problem. I forget the name of it, but it was a really good movie. Um, but the child was voiceless, uh, mute. But it turned out that his disability had nothing to do with his voice.

He, he couldn’t hear, you know, in those days in school, they didn’t check. Um, you know, now I think when you go to, uh, preschool or whatever, you know, you have to go and

this hearing test. Yeah.

Imagine here we are in 2024. We’re probably half the, the world doesn’t get tested. You know.

It’s the same, the same with vision.

How many kids go three, four, five years. And no one’s realized that one eye is not working and it’s not the eye, it’s the brain isn’t communicating with the eye. And if they can, if they can address that early enough, the child’s vision is saved.

But you see, this is the magic of, of your podcast, because if only one person gets something from you or something that my movie offers or something that I say that was worth the whole, the whole thing.

All right. So I had a couple more questions because I’m, I’m looking at time. I don’t want to abuse your time today. What were some of the biggest challenges that you had while you were filming?

Well, it’s funny you say that because I’ve answered this question from other podcasters. And, um, You know, I feel, and this is a kind of an odd analogy, but you know, when you have a child that’s got a challenge, you build a team, you know, and that team is hopefully, uh, equally compatible where you have a physician and a consultant and, and then you collaborate, you know, uh, you don’t make a movie like my movie, CAMERA, without having a team of experts that.

aren’t there for any other reason than wanting to be a part of something that’s important. And, um, there isn’t one person including Beau Bridges that, you know, I know, you know, when you watch the movie that there’s a message there that’s not subliminal. It’s just the story. It’s an older man who is interacting with a young child and becoming indirectly a mentor.

Um, That, that, the beauty of that is something that you as a parent and me as a parent know is, is just beyond words because I was lucky enough to have a mentor in my life. And I know Beau Bridges had a very famous mentor by his dad and also by, uh, having, um, uh, John Wooden from UCLA, who was a renowned, um, um, uh, coach.

That, you know, he trained and taught his students, uh, not, not what is the most important thing. It was a pyramid strategy that, you know, your goal cannot be just to win. It has to be the experience. And if you don’t win, the experience is loaded with fulfillment, you know?

And he brought that to the, to the movie and, and I got to just say, you know, um, the feedback that we’re getting on behalf of Beau on behalf of the little kid on even behalf of, you know, the story, you know, you start to recognize that we were brought up in a generation where, you know, in my parents generation, it was, it was called, um, Not, uh, a mentor, but it was called an apprentice.

Okay. And we don’t have that anymore in the vernacular. The vernacular is now, you know, Oh, uh, this could be a great coach. I think you mentioned that, you know, uh, whatever you want to call it, it doesn’t matter the fact that parents, I don’t believe you as a mother of a, of a, of a child, that’s got issues seeing.

Your biggest dream would be that she meets a professor that engages her at a level that is so extraordinary that all of a sudden she’s got a purpose she feels. And that’s the magic that happens with mentorship or with, you know, this idea that, uh, we’re all experiencing life independently. No, it’s the wisdom of older people.

That I feel is idle in America is something that Europe has always had. You know, when you go to, when you go to Italy and you see that guy making that perfect shoe, I mean, and it’s one of a kind, he is the son of a son of a son that’s made shoes for generations. And. I, I know I’m going on and on about this, but there’s magic there, you know, and I wanted to share that.

Do you have any, um, any future projects that you’re working on now?

I do as, as a, as a matter of fact, , we’re working on a movie called Yale, and it’s, um, just a magnificent true story that is about a. A man that, um, is a bigamist that has this, uh, inability to, uh, retain relationships and the story is really about his daughter who he’s exchanged from for over 35 years that has to, to save her own son’s life, um, re-engage with this man, uh, to save his son’s life with an organ transplant.

And, um, It doesn’t go as planned and that’s what makes the story so extraordinary. You know, it’s interesting cause in research, just like I just explained to you, I do a lot of in my movie. Um, this screenplay is filled with real life experiences from the actual writer. Cause it’s a story about his grandfather.

And, um, what’s like a lightning bolt to me is this idea that, you know, um, In my view, the film could attract, um, just an incredible interest in the value of donors. As crazy as that little issue is, that’s what I have to hold on to when I make a movie, you know? I know that, um, That, uh, this is a true story.

Uh, we’re screening the movie, CAMERA, and there’s somebody crying in the theater. Um, and it sounds like a, a little baby and it turns out it was, um, my sweethearts, um, Six-year-old nephew and we went to him and we said, you know, are you okay?

And he goes, oh, yeah and he said well because we were worried about you and he goes well I couldn’t stop thinking about my grandfather watching the movie and, you know, I don’t have a dad and what I see is my father and all the things he’s taught me and I just thought, Oh my goodness, you know, who would have ever planned that emotion coming from a young child?

Because in his case, his grandfather, who I know well. Is an extraordinary human being. He’s the kind of man that would do anything for his grandchildren. And not only is he doing that, he is, you know, essentially the mentor and, um, everything about this child, you can see the grandfather in. And why do I make this point?

Because, you know, you can’t go out to make a movie that you want to do that emotion from the audience. It’s organic, you know, and, um, that’s, that, that’s really extraordinary for me.

For someone to be, to be as young as that, to pick up on all those things as well.

Yeah. Yeah.

Before we close, I have had my guests this season give some advice in a little different way by having them repeat.

A few statements that are open-ended that I’m going to have, have you finish it for me? And, um, and Jay’s agreed to do this with us like our other guests have. So I have three for you, Jay. All right. So pack, pack full of wisdom. There’s no right or wrong on these. Whatever you want to share. So the first one, the message I hope to convey through the movie, CAMERA, is…

I feel CAMERA has an ability to comfort and open your eyes to something that I think most people take for granted. And that is how it’s possible to put a hat on that’s not only positive and fulfilling, but have an ability to be able to show in a movie, um, uh, the transformation of that fight of that thinking.

And to me, the most exciting part of the message of this movie is the idea that. Uh, young people and older people can share wisdom and in this movie, it’s about two characters that are in so many respects incomplete and the two of them together, um, I think improve one another’s lives and the message is very positive.

All right. So the next one, I hope the movie, CAMERA, will inspire viewers to…

I hope the movie, CAMERA, will inspire viewers to see that no different than the characters in the film. We all have the potential to want to share and become a part and partial to, uh, young people and older people. Um, and, and learn that we all have gifts. All of us that can make the world a better place.

Excellent. And the last one, the scene in CAMERA that I’m most proud of is…

One of the scenes that I’m most proud of in my movie, CAMERA, is where you start to put the puzzle together of imperfection. And I think everybody that has had, uh, somebody special in their life. Can reflect back on it and recognize the pros and the cons because it isn’t the fact that, uh, an individual came into your life and made your life better.

It’s the fact that an individual comes in your life and teaches you something. And to me, that’s the message of one of the, my favorite scenes in the movie where the character makes a little mistake and the true colors come out of the, of, of the mentor. And, and you realize he’s not.

How can our audience, how can they find the movie? Where, where is it available for them? How can they contact you?

My recommendation is if you want to watch this movie, you go to Amazon and you can rent it. Uh, there’s a whole bunch of most, um, what they call video on-demand sites, including Fandango, Apple, uh, they all have my movie now. I recommend if you have taken an interest in, in my films, you go to jaysilvermanproductions.com and you will see CAMERA along with other movies because I’ve dedicated my career to wanting to help others.

And that is the primary goal of my company. And I think you, you can read all about it and see trailers from my other movies. And to me, you know, um, the payback is the fulfillment of knowing that I’ve, I’ve, I’ve moved the, the, the gamut just a little bit into a direction that’s a better world. Perhaps.

Perfect. So we’ll, we’ll put the link to, um, to your website because from there they can get to the platforms to be able to watch it. Is that correct? Yeah. Okay. That’s correct. So that, that’ll be the easiest thing. So we’ll put the direct link there. And, um, I appreciate you taking the time to, to go into detail about your own personal journey, but then, um, but then telling us a little bit, a little bit more about the movie too.

I’ve, I’ve really enjoyed meeting you today and, and thank you for being here.

It’s my pleasure. I wish Water Prairie Chronicles the most success because in all the years I’ve been doing this and it’s almost 43 years, you know, it appears that you struck a chord with me personally and with people that have children that have challenges, um, a destination.

And I really respect that. And I understand that it’s predominantly a labor of love and I’m super grateful for being on your show.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Communicating Beyond Words Using AAC DevicesShow Notes:Tired of feeling helpless? Learn how to advocate for your child’s communication needs.In this interview, Tonya speaks with Julia Pearce, a mother, disability advocate, author, and assistive technology specialist, about the use of AAC devices (Augmentative and Alternative Communication devices) for children with speech impairments.

Pearce shares her personal experience with her son, Dallin, who used various AAC devices throughout his life. She emphasizes the importance of early intervention and assessment to determine the best communication tools for each child.

The conversation highlights the different types of AAC devices available, from simple one-button devices to complex speech-generating systems. Pearce stresses the importance of involving parents in the decision-making process and the role of assistive technology teams in providing support and guidance.

The interview also touches on the broader concept of assistive technology, which encompasses tools to support various needs, including reading, writing, and mobility. Pearce encourages parents to advocate for their children’s access to assistive technology and to collaborate with educators and therapists to find the best solutions. Overall, the interview provides valuable insights into the world of AAC devices and empowers parents to explore options for their children with communication challenges.

Be sure to catch Julia’s interview about parenting a child with epilepsy in Episode #102!

Connect with Julia:

Website: https://juliapearce.net/
Instagram: https://www.instagram.com/runnamokk/
Facebook: https://www.facebook.com/julia.pearce.754/
LinkedIn: https://www.linkedin.com/in/julia-pearce-0b06b01b/

Purchase Julia’s book: https://amzn.to/3WmQuck

** As an Amazon Associate, I earn from qualifying purchases.

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Meet Julia Pearce, an inspiring presenter and author about advocacy, personal lived experiences, and communication. Julia is dedicated to sharing her space and story to help others.

Julia is a well-known presenter at local and national conferences. She writes about communication, advocacy, and her own experiences.

Julia authored a powerful memoir, sharing the life of her son, Dallin, who lived with multiple disabilities. With decades of experience working in education and assistive technology.

Episode #103: How AAC Devices Can Connect Your Child to the WorldCommunicating Beyond Words Using AAC Devices###### (Recorded April 10, 2024)

Full Transcript of Interview:

Julia: When I think about assistive technology, it gave him a way to say what he wanted, how to tell jokes, to decide who he wanted to talk to and when, and how much information he was going to give.

Tonya: Imagine a world where your child can’t tell you what they need, want, or feel. For parents of children with limited speech, finding ways to connect and understand their child can be incredibly challenging.

Welcome to the Water Prairie Chronicles, a podcast for special needs parents. I’m your host, Tonya Wallum, and I’m glad you’re here. Today, we’re diving into the world of augmentative and alternative communication. or AAC devices with special guest Julia Pierce. She’s a mother, disability advocate, author, and assistive technology specialist who has firsthand experience navigating this journey.

Julia, welcome back to Water Prairie.

It’s great to be here. I love these topics.

This has been fun. We, we learned a lot about you and of Dallin’s story last week and listeners, if you missed that, make sure that you go back and listen to the story. It’s um, it’s, it’s a very heartwarming story, but um, but it, It’s sober as well.

So, um, but it, it’ll tell you a little bit more about where we’re coming in from. So if you did miss it, make sure that you go back and catch that. Today, though, I want to talk about, you mentioned how he was, he used sign when he was younger, but that he tried different devices. And I want to talk about that some, because some of our families that are listening are familiar with AAC devices or they’re not familiar with it yet, but they’ve had it mentioned and they want to know more about it.

So can you tell me a little bit more about the different types of AAC devices that Dallin used? Okay. And how they helped him to communicate more effectively.

This is one of my most favorite things. I may have mentioned to you when we were speaking that assistive technology and augmentative alternative communication is how half of my body flows.

Dallin is my other half. And so bringing them together is pure joy for me. Dallin did sign Use sign language, his signs were adapted, he had lost his intrinsic muscles, those teeny tiny muscles that help us do a thousand things, but also accurately sign and yet anybody who knew American sign language or other types of sign language could read his sign.

And so he did that. First, when he came home from the hospital, he did survive an illness and that took all of his communication, expressive speaking language. When he got home from the hospital, he needed to let us know what he needed because he was able to do that before he was ill. And so. A speech therapist, a speech language pathologist had recommended teaching sign language to him right away so that he could have quick access.

We didn’t know if it was going to work. I started teaching him sign language. He learned it as quickly as I could show it to him. His first sign was cracker. Uh, Joy, he was two, he needed to ask for a cracker, he couldn’t open up the cupboards, and we taught it to him as quickly as we could. From there, once he started in preschool, he had an assessment.

In our state, we have assistive technology teams in each of our school districts. That’s not the usual or common thing across Especially in the United States, sometimes there are, but in ours, we had an assistive technology come team, come and do an assessment, complete one with him. It basically meant they watched him, saw what he was needing to.

Let others know about, when he was in preschool, he was about four years old, they had him start to learn about language and they found that maybe having a one button speech device that would say one thing so he could ask for help or request markers or call for a friend But it needed to start making sense for him because he was signing, but not everybody could understand those adapted signs.

And so that’s where he started was with sign language, which is its own language. And then they started using augmented and alternative communication or AAC with him when he was four. Every other year from there on out, that assistive technology team came and did either an updated assessment or a follow up with him and he started to use additional voice output devices, speech generating devices throughout his life.

When he was seven years old, he trialed one that he thought was so cool because he was in charge. of how loud the volume could go, when he could change the volume and what it said on the front. This is before any of the tablets like that we use now. Sometimes it’s on what we, the iPad or some other of the other types of tablets.

This is so many years before that. So we trialed a device with this assistive technology team and he was in charge of when To change that overlay, he could turn up the volume. He could yell at us from across the house and say that he needed more, or this is hilarious or whatever it was. When he was seven, he got his first piece of equipment for home that helped him communicate along with his sign language.

Then he added more things in school. We added more things at home and it continued from there. Technology also changed across all of those years. He got another device when he was 15 because he decided he needed to say more to people who didn’t understand his signs.

Did he at any time use multiple types of devices for different situations?

He did, and in school, in his preschool, and elementary, there might be that one button sitting for requesting or commenting, so I, you know, I need more milk, because snacks is when you always need more milk, when you need to put that cookie in, and you’re, they’re making a mess, and they don’t want, whatever it is, but what if over in the, the, With the shaving cream, they, you need to clean up and then there would be something about, I need help to clean up.

Eventually, our son had seven devices that he placed in our house for different things at different times with sometimes different people. Yeah. You would say, this person isn’t going to learn more than this, so I’m going to keep it simple for you. And I’m only going to use this. He had Um, two systems that were more complex that he knew would confuse some people.

So he didn’t use them with everyone. He was a very astute communicator. And then he had a couple systems that he would, we used, we called them pop talks in our house. They were quick. Come and look at this. You’ll never believe what’s happening. This is so funny. Oh, you missed it. Come here fast. They were so quick because if I couldn’t see his sign language, he still needed to get my attention.

And then we would communicate with other ways. He was also great at rolling his eyes and slapping his leg. And he used everything around him for communication. And so do a bunch of us. So do a bunch of us. I’ve been rolling my eyes and lifting my eyebrows. You guys have all seen. And you hear the tone in my voice and my shoulder just went up. And that’s all part of communication as well.

Well, I think about, you know, if signing was his primary language, it sounds like, so that is more expressive with the full body language. And the facial expressions and everything else. So it sounds like he, he kept using that no matter what he was using.

He did. He used that from the week he got home from the hospital after his illness until the week that, um, he did pass away due to his disability. He used sign language until that final week of his life, along with many other communication systems. He used everything. Every chance he could, he used it all.

Now, was he, was he around when iPads were being used for, for an AAC device?

So I love the iPads because they’ve been out for, Almost 12 years, about 12 years now, they came into play right as he was coming near end of life. And he, at that point he had seven different systems and the assistive technology team and his teachers were so wanting to try it. They’re like, let’s try this.

He had established communication systems at that point. Was very kind. And he let them try things with them and then he gently closed the iPad case and put it back into their bag and said, I’m good.

I have not worked with an AAC device. I’m familiar with what it is, but I haven’t used it myself. But my thought was the number of screens that could be loaded into that.

Then you were saying from different environments, he could just switch to that simplified screen for those who don’t understand what he’s trying to do and then switch to the more complicated ones for, for the family and everyone else.

Yeah. So the device he did have was similar to. What we have now on the iPad. It was on about the size. It was about this big. So it was about the size of my iPhone. Now it was about that size. It did the same thing that the apps do the communication apps do now. So it was a very robust, full communication system.

So, was he your first introduction for you personally to assistive technology?

He was. Yeah. When he started having those assessments by our assistive technology team in the district, I didn’t even know what the words meant. The teacher said, would you like this assessment? And I agreed and didn’t know what I was agreeing to. And the, the team came out, they included me during the discussions, they showed me what would be.

I’m happening. They taught me this new language about language communication and all of the things and was very, we were very much a part of things together. Dallin and I and the assistive technology team and all of his education folk. We were all there together.

And now you’re working in the field of assistive technology. How did that change come about?

So when I was in. I had a situation where I began working for the school district. He was in preschool, actually, and a job came up. And part of what happens sometimes is when families are looking for work, which was what I was doing, one came up in the schools. And so I could go to work while he was in preschool, and then I would get back home.

So I was working the amount of time. That he was in school and then things changed with his health. So when his things changed, I was no longer able to work in that position in the school district. The assistive technology team actually had a position that they needed to have filled. And I had known them for the previous nine years because of their work with And they knew that I was.

Just voracious. I would learn anything and put anything into practice. They could give me a new device to learn for Dallin. And I would take back in the day, the manual, which is four to five inches. Nothing was online back in those days. And they said, okay, you have 30 days with this. Good luck. And I would say, awesome.

And I would take it everywhere with me. I would take it to parties and people. Are you doing? Devices were massive back in the day. So I started working for the assistive technology team in the district. And I worked there with that team for 10 years and learned and worked alongside of this marvelous team that had been with our son for the previous nine years, and that’s where it began.

They taught me and I went to conferences and. I’ve been now working in assistive technology for 20 plus years, almost 25 years. I now do it at a different level within our state. Still are connected with all of our school teams. And that was the beginning of it with some really incredible, powerful, powerfully inclined people to help students learn and grow. And do what their goals are as the students determine it,

I can imagine too how many families appreciated having you there because you understood as a parent, some of the confusion that there is and trying to learn, but then having that sensitivity of seeing the success that your son had with it and being able to help expose their, their, their children and then the families as well to, to new technologies. And this goes beyond just AAC devices.

Dallin used augmentative equipment for communication. He also needed supports with executive function, knowing this was going to happen and being able to predict what was going to happen. And he also needed things for writing and for mobility later. So assistive technology. It’s. This massive category under, um, IDEA, Individuals with Disabilities Education Act, and so powerfully supported.

So can you, can you give us an idea of some of the different types? So you’ve, you’ve mentioned a few things there. What are, what are some of the most common areas that a might hear that There’s a recommendation that their child tries out something.

So within the broad scope of assistive technology, there’s ways to support people with reading through what’s, um, could be called like text to speech. So you hear what is, um, on the screen if people have a hard time with reading and writing the opposite, which is speech to text. And. The, so that’s when you speak.

So we use it all the time. Some of us have it on our phones where you see the microphone. It’s also in many of our computers. So it’s utilizing those types of things with vision. It sounds like many of us. may need some support. I have my husband using enlarged text. There’s also screen readers that help people when they need to have things read that’s on the screen.

There’s executive function, that’s knowing where you’re going next. That’s why I have three calendars. Knowing where I’m going next and what I’m supposed to be doing and who’s going to be there. There’s so many things. And then with communication, there’s a It’s just a broad array for communication supports and then we get into the fun parts.

There’s assistive technology to help with leisure, which is having fun. We use that word leisure and I think of a leisure suit and I should be in Arizona. Um, but it’s having fun. It’s why our son, when he needed to go from skiing on his feet to sitting down skiing, that was an adaptation and assistive technology for his skiing.

There’s so many fun, fun things and he was the one who helped us decide it. And that’s what we get to do with assistive technology.

So it’s not always electronic devices that we’re talking about.

No. And so I mentioned that our son used seven different systems. Some of them had batteries, some of them plugged in and some of them we use tape to put on the, that was part of his executive function support that he actually used for others who came to the house to say, this is what I do, and then you’re going to help me do this, and then you’ll help me do that.

It was for him to help others know what he was going to do next. Cause. You got to follow the schedule when you’re in somebody else’s house. And there’s a lot of things people say. It could be a pencil grip. It could be a slant board, which is actually sometimes a three inch binder. There’s so many ways.

If you use a three inch binder, use a non slip, um, surface. So the paper does not fall off. There’s so many ways to look at it. That’s why having an assessment done, if needed. Um, is always a bonus.

Well and, as a parent of a child who didn’t need this, I’d recommend you parents that are listening. If it is mentioned, have the evaluation.

The worst case would be, they say, everything’s fine. You don’t need to make any changes. The best cases. You find a piece of a small little tool that you never thought of before that makes your child’s life easier and they’re able to continue learning. And, and sometimes it is, as you say, maybe it’s entertainment, but they have the right to be able to have downtime and enjoy themselves during that time.

Um, and you’re talking about the slant board. It could be as easy as having a slant board for a child who has a posture issue and now their toys are reachable for them. They’re not having to search for them. Um, things that we as parents may not think of. So I, I appreciate explaining that more.

Yeah, there’s so much. I, and there’s, there’s frameworks we can use and there’s observations and, oh, that’s so much fun. I, by the way, I’m never bored.

Well, creativity has got to be half of your job because every child’s going to be just a little bit different from the one before.

For sure, yes, there’s so many ways to do this for an individual. And again, that’s part of IEP is individualized education and. It’s so magnificent what we can do now, even for our son, people say, why did he need so many things? Well, he chose them. He told us what one more area that he needed, and it could have been when he was looking perplexed in a situation where like, I wonder if something more could be needed here.

I wonder if, and then we would try it and it would fill that need for him at that time in his life. And that’s what we would do. Stay curious. It’s beautiful.

So parents that are listening We, we, we’ve just listed a lot of different categories that you may hear about them in. If parents are feeling overwhelmed about the types of technology that are available, what resources would you recommend that they use to try to help them narrow down what they really should do or not? And I think your first answer is probably going to be listen to your child. But maybe not.

So listening to your child is one piece of it. I think crafting a really well put together IEP, because the goals come first. And then looking at, is there something we can put into place to help with an accommodation support, like through related services, that’s your different therapies in a school setting.

Is there something we can add to help create success for that goal? So if you have a reading or writing goal and you’re working on it and you’re like, is there something more that could help with this? If a child is using a Chromebook and it’s not quite working well, is there a setting under accessibility?

That’s called universal design for learning, and sometimes teachers are saying, well, I’m not quite sure about that. Is there an extension that could help with that? A lot of schools are using either a Chromebook or an iPad, or they’re on a desktop computer. A little bit less often on desktops now, but is there something after the goal is created?

And now how do we help this child find success? And that’s where the consideration process of assistive technology comes into play. And if things aren’t sure by that IEP team, then you can say, does anybody else have a resource that we can ask for them to come in and look at assistive technology? Now, in our state, like I said, every district.

In public education has access to one of our assistive technology teams. And if your state is a little different, you still have access to that consideration and, um, use of assistive technology, cause that’s under IDEA. That’s under the federal mandate. Now that comes through. The special education director or the LEA and asking the question of, I wonder if something more could be done with assistive technology.

And if you get a look of, huh, then is there a resource we can bring in to help us figure this out? There’s all sorts of resources. I love asking these kind of questions. There’s parent training initiative centers, sometimes called parent training centers that can help with these things. There’s many resources that are available, but asking about that.

Hey, let’s consider assistive technology. It’s actually under the five special factors. on each IEP that should be being looked at. And I say should, but it’s actually must as per Department of Education. I love Department of Education. So it’s actually one of those five, five special factors. Uh, I know now you’re all super curious because I love that part of the Difficulties with Disabilities Education Act.

That’s where you start, start with your goals and then Is there more that can help provide success for this student at this time?

I know, um, as I’ve talked to parents around the country, some, some of them are living in very remote areas and their school system may not have direct access. More than likely, it’s more a case where they’ve never had the question come up before.

And so parents, you’re listening. You just heard, you have permission to ask this question at the meeting, or even beforehand. Um, yeah, I recommend submitting your, your questions ahead of time so that the team can have time to, to answer them. Investigate a little bit and be ready when you come in and, um, and, you know, if you can approach it as a teamwork, then, then you’re going to have a better relationship to begin with.

But, um, but you may be the one that now teaches the entire school district and help the children that follow yours learn that this is a possibility.

It is really great when you can ask a question like that and they get their thinking caps on with you. It is. Doing it together that becomes powerful because everyone is there for the success of your student. They really are. They really are.

I want to transition now to our advice section here. So I have three questions for you about AAC devices and assistive technology that we’re going to try to pass on some advice with. And the first one is, The most significant way assistive technology has impacted the life of someone I know is…

The most significant way assistive technology has impacted the life of someone I know is. Through my son, of course, and when I think about assistive technology, that is the way that I think about how it gave him a way to say what he wanted, how to tell jokes, to decide who he wanted to talk to and when, and how much information he was going to give.

It also was how I saw that it impacted his life. And he decided when to say no and when he was finished, which are equally powerful for somebody to know how to do that for self advocacy and self worth. And that’s how I saw it be so impactful.

Okay, next one. When choosing assistive technology for a child, I always consider…

When choosing assistive technology. For a child, I always consider four things. I learned this through the team that I worked with, how they worked with our son, and through this same national presenter. Her name is Joy Zabala. She has a framework that’s called SETT. S E T T. Looking at a student, who they are, where they go, the environment they go to, the tasks or the goals they have in life, and then going to the tools or the things they’re going to use.

Those four things are how people, team members, Teachers always saw our son, it was him first. It was never a tool first. It was never the equipment or the system or the product or something. And then it was where he wanted to go. If he wanted to go tell the secretary something or his bus driver. And that’s what I do now.

Who are the people I’m working with? Who are these young children or young teenagers? That’s what I do still, those four things, and it’s that framework from a grand teacher in the universe, Joy Zabala.

And I like that, that you broke down student to, to the who first, because that’s, that’s the most important part. Okay. So the last one in this, we talked about this a little bit, but I think this is a good way to wrap it up beyond the technology itself. The key to unlocking the child’s potential is…

Beyond technology itself. The key to unlocking a child’s potential is to let the child lead, to let them show you what a preference.

Or a non preferences with a device, a system, a place where they are, where they want to go, how they’re going to interact with who or what is the key. They will and have and continue to be the advocate. That they know to be. If we will get out of their way and be still, that is the key.

Excellent. Great advice. You keep, you keep bringing it, and I appreciate that.

It’s I’ve seen it for 30 years in many, many situations. When we get in the way, then we’ve lost it. They know it and so will we.

And if we can teach them to speak early, then they’ll continue speaking. It’s, it’s when we kind of poo poo what they’re saying and keep pushing them aside that some of our kids will, will stop thinking they have a voice.

So, um, so I love, I love the way that you’re advocating for all and the voice can come in different ways. It may be electronic, it may be through sign, but you’re, you’re, you’re right. They have a voice and they, they, they know what they want to say if we’ll listen to them.

Yes, they do. Yes, they do.

All right. Tell us again how to find you, what projects you have going on. Um, I was excited when I heard about the second book coming up. So, so tell us about all these things again.

So people can find me on Facebook and Instagram. My website is juliapearce.Net. That’s P E A R C E. That’s how you can find me on my social media as well.

I’m also on LinkedIn. I, you can find my book on my website. The book is The Boy Who Became More Than We Could Imagine. The flow of assistive technology is almost everywhere in that book. It’s how we knew him. My next thing’s coming up. I do have a second one that I am writing about what comes next. People have asked me for that one.

It was always in the works. What comes next after a child is no longer here with us? And then I do have another project that I am working on supporting families of children who have passed away. their family members, their siblings. And that’s what I am doing now.

We’ll put the links for all of that in the show notes and on the webpage. So if you’re on the audio, you may have to go to the webpage to find it, but it will be linked everywhere. If you have questions about AAC devices, assistive technology, what you need to ask going in, Put your comments in there. Contact Julia directly. Send us an email to info@waterprairie.com. We’ll get the, the answer back to you.

So just reach out. That’s, um, we can’t answer you if you don’t ask. So, so leave your, leave your comments in your notes and we’ll, we will get, get that for you. So Julia, thank you for, for sharing all this. I, I even having. Children who are in the system, a child who had multiple technology evaluations. I learned a lot today. So thank you for sharing this with me.

It was so nice to be here with you. Thank you for letting me come.

I hope this conversation with Julia has provided valuable insights and resources for you. If you have a child with limited speech, remember you’re not alone in this journey. By sharing stories, information, and support, we can create a stronger community for families facing similar challenges.

If you found this episode helpful, please give it a thumbs up and subscribe to the Water Prairie YouTube channel for more informative content. Your support helps more families find these stories. And don’t forget to leave a review on the Apple podcast. Your feedback helps us improve and ensures we’re delivering the information you need most.

In the next episode, I’ll be speaking with Jay Silverman, a parent advocate and filmmaker. He’ll be discussing his experiences raising a child with limited speech and his new movie CAMERA starring Bo Bridges, which tells the story of a non speaking young boy. Thanks for joining me today and I’ll see you next week.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Learning to let our children lead us in parenting a childwith epilepsy.Show Notes:A Mother’s Journey through Unexpected Illness and LossIn this heartfelt conversation, Tonya Wollum sits down with Julia Pearce, a dedicated advocate and mother, to explore the challenges and triumphs of parenting a child with epilepsy. Discover the incredible resilience of a mother as she navigates complex medical systems and celebrates her child’s unique spirit. Learn valuable insights, find inspiration, and connect with a supportive community. Join us as we delve into the world of special needs parenting and uncover the power of love, hope, and determination.

Connect with Julia:

Website: https://juliapearce.net/
Instagram: https://www.instagram.com/runnamokk/
Facebook: https://www.facebook.com/julia.pearce.754/
LinkedIn: https://www.linkedin.com/in/julia-pearce-0b06b01b/

Purchase Julia’s book: https://amzn.to/3WmQuck

** As an Amazon Associate, I earn from qualifying purchases.

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Meet Julia Pearce, an inspiring presenter and author about advocacy, personal lived experiences, and communication. Julia is dedicated to sharing her space and story to help others.

Julia is a well-known presenter at local and national conferences. She writes about communication, advocacy, and her own experiences.

Julia authored a powerful memoir, sharing the life of her son, Dallin, who lived with multiple disabilities. With decades of experience working in education and assistive technology.

*Episode #*102: Parenting a Child With Epilepsy: Dallin’s Story**Learning to let our children lead us in parenting a childwith epilepsy.###### (Recorded April 10, 2024)

Full Transcript of Interview:

Tonya: Can you tell us about Dallin and um, maybe start from the beginning and let’s look, look at those really early years.

Julia: Oh, I love talking about him. So, thank you. Thank you for letting me start with that. So, Dallin is our son, and his experiences, his life started when he was just a little fun, little dude.

And I call him a dude cause he knew he was, he faced life, um, full on into the wind, he loved to just look and experience and go through, you know, Every toy in his room and then look at things with a calmness and then life changed right before he turned two. He had an unexpected, what they call the catastrophic illness.

And of course we didn’t know what that meant, but what happened is the week before he turned two years old, he started having, um, seizures and it started one day when he was home with his dad, I started a new job. So, I had no idea what was going on, but our marvelous little, almost two-year-old started having seizures.

And so, emergency response was called and they had no idea what was going on. My husband took our son to the doctor. They saw no reason for it. And so, they sent him home and said, this could have been one of those one-time occurrences, and then they came and got me from work and I said, what happened to you two?

And they said, you’ll never believe it. And I surely did not believe it. Well, what happened next was he woke up the next day and could not walk and could not speak any longer. He could not get that cereal to his mouth. And we called the doctor and they said, get to the emergency room. What happened then is he was in the hospital for the next nine days.

He continued to have multiple dozens and then hundreds of seizures that until they got controlled, caused just massive chaos in a little teeny tiny boy. None of the doctors could figure out what was going on. And that was the start of a change in our life, and how we began to figure out how really cool this little dude was because the doctors did not think he was going to survive this.

Again, they called it a catastrophic illness. And we were these young, knew nothing parents. We had gone from, sure, let’s put Cheerios out and try and get a kid to eat broccoli. And then we ended up in the hospital. This illness took all of his development. It took the ability for him to walk or talk or eat or sit up or even hold his head up and they had no idea what was going on.

It was nothing they could find a reason for. And yet he got up every time after a doctor would say, we don’t think he’s going to regain or start again or do something. And our son, because these doctors were talking around his little crib. And somehow, he would look and say, are you sure? And then he would get up the next day.

And one time specifically, he had what they called a taxia, which was, um, they describe it as just loss of, um, Neurological control and movement, and he could no longer walk again, holding up his head. Wasn’t something he could do any longer. He had lost all of those skills. He got up the next day, pulled himself up to the side of his crib, and climbed out.

He wasn’t in a crib any longer at home. I called the nurse. She got an IV pole, and we were off, not crawling again, but running. The doctor soon heard. And they got him a helmet because he was still having so many seizures. And that was the beginning of us learning this whole new world. What his life then told us about him was that he was going to do some really amazing hard things in this life, and we didn’t know what that was. Once we figured out that he was going to survive, he did do that, and then they sent us home, and we began again with this powerful, teeny tiny, little marvelous young boy who started to show us like, are you coming? Cause I’m going.

And that’s how he continued to tell us who he was going to be. He did regain the ability to walk. He did learn how to do many things. He didn’t learn how to speak with a vocal voice, but he did learn how to communicate using a lot of, um, systems for communication, including, um, sign language and a lot of things.

I was going to ask if he did sign. Yeah.

He did. It was his first mode or way of communication, even though he could not use all of his little muscles. They’re intrinsic muscles in his hands. It was still his choice of what he chose to use as communication. We did therapy from then on out. Met very many doctors as his disabilities started to increase and pile on one another.

He never cared. It was like, so we’re going to play. We’re going to go. We’re going to choose this next thing. I’m going, somebody’s got to take me, and let’s do this. He was an incredible soul.

I talk a lot about this, that a lot of our kids, you see those personalities so early.

Dallin showed us from his very first moments that, hey, I am here.

Let’s go. Life is grand. And then when he survived his illness. Hey, let’s go. I am here. Life is grand. It looked very different and yet we were there for it and we needed to learn a lot of things and we did.

So, these are massive seizures that he’s having to have that many. One after the other and, um, you know, as young parents, did the doctors explain to you what this was other than saying he can’t do this and that he’s already proven wrong.

But you know, how did you even get to the point of understanding what they’re talking about and what that really meant?

So, in the hospital, it was pure survival for real. It was pure survival. They placed so many IVs in him that. Veins collapsed, and I’m sharing that because I think you’re with an audience that can understand those words.

Uh, so, we had so many medical interventions and so many tests. They did everything to try and find, we were in survival mode. And so, when a doctor or a specialist or a team would walk in. I was taking notes after notes, tracking seizures and what test is next. And is it with or without what they call contrast on an MRI, or are we going to talk to this group next?

And then they sent us home. It is, they get you out as quickly as possible. You do not want to be in the hospital for very long. And they did that. That was 31 years ago. We survived the hospital with a lot of. Tender care from the people around us, including really incredible medical staff, kind people who tried to bring in toys and ways to divert him from the sheer chaos he was in.

And then we went home and we’re connected with early intervention, which is birth to three. I had no idea what these things were. And so, we learned as quickly as we could. I learned as quickly as we could, taught Dallin how to walk again and how to eat, and we were happy that his hands could come together again, and it all was very perplexing, and we were grateful.

So, you had an early intervention. Was he on medication that could control the seizures better?

So, for periods of time, seizures are the beast of life, in my opinion, so, he can, or he could be on medication and then he would break through the medication and we would see more seizures and you would change the, The level of the medication, or we would add another one or take one off.

And that was the dance we did for his lifetime. And that’s it. The seizures were his nemesis forever. They usually are with people. His seizures were, um, intractable, meaning they could not treat all of the levels of his seizures. So, we treated as much as we could, along with a lot of studies to see if there were other interventions that could have been helpful.

We looked at all of it for his level. It was called intractable, again, intractable epilepsy.

So, as young parents. I mean, you’ve gone through the trauma really of the initial diagnosis and, and all of this. Now you have some supports in your life. You’re going on, you know, several years have passed now. How did you cope with that uncertainty of the diagnosis and how the long-term impact that was going to be on him?

Again, when he was so little. Um, in those, those three to four-year-old, we were trying to just keep on top of the, the medication and when to give it and figure out what he could eat and how we were going to get him to eat. Food was really kind of tricky again after he couldn’t swallow. We were trying to do those things again.

And then when he got into early elementary years, so, we got through preschool, preschool was a lot of. Learning time of, um, what is this? Why am I sending him on a school bus? You gotta be kidding me. I’m going to do this. And he loved it. He was this insatiable learner of life and let me go and do this and play in water and sand and mud and be around kids who make me laugh.

I watched him do these things occasionally, and it was joy for him and very hard. He needed help to hold onto the crayon and open his juice and sometimes get that cookie to his mouth, but it was a cookie, so, sure, I’m going to do this. And so, then we learned the system of education through going to trainings.

And I would talk to my husband and say, you’re never going to believe there’s this law. And it was the Individuals with Disabilities Education Act. And he said, there’s a law so kids can go to school? And I said, it’s the coolest thing ever. And then we kept going. And I say we, because it was always, I learned and then shared with my husband and he, we both became open advocates, and let’s do this together for our son.

You’ve mentioned, um, when you provided your information about your story, that Dallin faced a second illness later in life. Now, was that in his early teen years? Is that correct?

Yeah, he was about 13 or 14 years old when a secondary, what they called a muscle wasting disorder.

We never did find a reason for that to happen. He started losing strength and muscle and ability to first use his leg muscles. And then it went into his hands and then it went into all of his internal muscles. And that happened when he was a young teenager. So, then we continued to add supports for Um, people to help him walk So, he would hold on to somebody’s arm and then he would help push somebody else’s wheelchair because he was not going to sit down in that wheelchair.

He helped people. He did not like to use a wheelchair. There was no way we were going to get him to understand how to use a walker. He also had an intellectual disability along with the medical needs that were happening that did start. When he was a young teenager and progressed through from about 13 or 14 years old for the rest of his life.

So, this is just really unusual that both, there’s not anything you can point to say, this is why either of these situations happened.

I know. And when he was in the doctor’s offices, we had one marvelous doctor who would say, Oh, he’s such an enigma and say it with the tenderness of like an uncle.

Dallin also had a blood disorder. He developed osteoporosis. He had that intellectual disability and used many things for communication. He was noisy. Like he could holler at you, but he did not have expressive language that was spoken language. Um, but he did have communication systems that he used very effectively.

He also had, um, a few other things because why not just have a list that was this long. And they never found a reason throughout all of his experiences that could have. Told us why it all started. And at one point we said we were done looking. There was no genetics, there was no markers. Every five years or so we would go back because genetics is a continuing science.

And then, um, he actually told us he was done with all of that. Malarkey. He told us he was finished with it one time, and I said, That’s fine, we’re done for today. And he stopped me and said, I’m finished. And we said, Okay, we gotcha. And we stopped with all of the testing. And he was a young adult. You get to say when you’re done. You get to tell your mom, I’m out. I’m out of here. That’s what he did.

Well and at that point, was it important to him to understand the reason behind it? Maybe not, maybe not, not worth going through the testing process every time and all the, he had enough meetings that he was having to have already.

It wasn’t important for him and it low, no longer was important for us. It was Dallin. Dallin is who we followed and who we continue to be right in sync with. If we could follow that rhythm, joy.

So, I want to switch gears a little bit. You’ve, you’ve referenced a couple of times, that Dallin is not with us now. Did you have time with him to talk about that before he passed?

Yeah, he did not have that level of understanding. That we could talk about it, but he did know that he was understanding that something was changing. And it’s phenomenal when we got out of his way, which we did and needed to do a lot of. Just get out of his way. It was not about us. That’s a learning curve for, I think, a lot of families with and without kids who have disabilities.

You got to get out of their way. When we got out of his way and let him lead us, when he told me that day, I’m finished. And he signed, finished. It was so distinct. Stopped, looked me in the eyes and said, Mom, finished. It’s like, yes. We canceled everything for six to nine months.

Wow.

And like every test, every lab, every appointment and chill, stop, played a ton. We didn’t stop playing cause that’s the pulse of our lives. So, he knew something was changing. He did finally um, stop doing some of his loved activities, such as mountain climbing and snow skiing and horseback riding. These are things he had done since he was probably four to six years old. He did know that he was getting weaker.

We didn’t have the opportunity to speak with him with a team of, let’s say we were with palliative care, which is a group of individuals that you get to. And I say, get to on purpose, if you have somebody who needs extensive medical support during, um, the type of illness that Dallin had. It was a degenerative illness.

Dallin didn’t come to those appointments, but we sure watched his body cues. When he was tired, we went to school late, or they called me and said, he’s just told us he’s done for the day. And which meant he was finished and got his backpack and said, call mom. Right? He like, he was very exact or they just watched him and said, he’s not looking great.

We didn’t have the opportunity to do those for those extensive conversations, but we did extensively and consistently watch for signs of fatigue and his body changing and the large muscles getting weaker, which means we did eventually get him a wheelchair. He did learn how to use it for a short period of time.

Did mostly help other people, including us at one point. It’s like, I got to push somebody. So, you’re it. Um, that was his muscle memory. That was his go-to in life. That’s how he worked in the world as he did things and served and helped other people as his joy of the world rotated. That’s how he did it. We watched him.

Such a cool kid. I love hearing about him.

So, cool.

And I’ve seen pictures that you’ve posted on Instagram about him. So, I’m picturing him as you’re describing his personality with it.

He’s so cool. I do want to say he was also tough as nails and as determined as a hornet when things were hard and he was confused and it would, like, he was the toughest, gnarliest dude. Which is why he was so cool. He was like, roar. And then, hey, how are you? In the same blink of an eye.

You had those early years. You had all the support. He was in school. You had the support with a huge IEP team. You had the medical team that was working with you. As you approached the end, did you have support?

And what type of support did you have for yourself? You had the palliative care, but did you have support? And anyone that you would recommend that another parent in your shoes needs to make sure that they have them aligned with them as they’re going into that last phase.

Part of what we found and what I found is not only people for and with Dallin, but for and with us. So, I use those, like, what did I need with me? It was my friends who I could say, this is so bizarre. And sometimes it was people who I had just met. Sometimes it was people who I had met when our son was very young. And I was trying to figure out these service systems, our systems for people with intellectual developmental disabilities, or our mental health system, or the people who could say, I don’t know what you’re going through, but wow.

The people who could, um, withstand it and not everybody could at his end of life. Uh, we did have services from our state agency for people with intellectual disabilities for a period of time. We were on the waiting list with that state agency as well. It’s how things work in our state. And yet, um, I wanted to put Dallin in bubble wrap and just say, he’s mine.

I’m going to stay here. I’m going to look at you. And he was like, get out. You got to go. He really would. He would lead, guide you out of the room. And yet we needed to watch for an increase of all of his medical needs. So, we had supports like a closed caption camera, and we had two people that would come and make it so he didn’t have to be around me 24, seven, cause he was like, mom, I’m going. You gotta, you gotta go somewhere.

He really would make me leave the house and somebody else would come for maybe one or two hours a day at the, the last few months of his life. And so, I would, and maybe go around the corner while somebody was in the house in case the medical needs changed, but he was like, please.

We’ve talked some of the season about self-care and how it’s not a spa day or anything like that. Sometimes it’s. In your case, just going around the corner, maybe sitting in the car or standing on the corner. Um, it might be taking a short walk, but, um, but I think it is important and he was willing to give you that time too, that, that, that you needed to get out of the house, um, whether you agreed with him or not, it probably did give you a better perspective coming back in again.

He, he was so powerful. He taught so much by his. Pureness and he was a stinker. I’d be like, oh my gosh. And he did, he, he gave us, and he also caused like trembling of, I’m not going to survive this, we did.

Well, I’d like to transition, um, to the, um, the advice time of our interview. I’ve. This season, I’ve been having each of my guests close by giving some advice to the listeners, um, uh, related to the topic that we’re talking about.

And I have three statements that I’m going to read to you and have you repeat and answer the end of it that stays open, however you want to. There’s not a right or wrong here. The first one I’m going to give you is, the hardest thing about advocating for my child with special needs was…

The hardest part about advocating for my child with special needs was the systems we had to work through.

And when I say that, I mean, Dallin was not the hard part. Figuring out the ins and the outs and the right door and the right wording was where the hard parts came. I could learn who to talk to and if I didn’t say the right word, they would say wrong door. And then I would go back and I would say to a friend, they told me it was wrong and they would say, did you say this word?

And I would go back. That was what the hardest part was for me is if you did not find the right word and the right door, the barriers were massive. So, I found the right words and I found my right connections and my right friends who became mentors and who became advocates with me. And. That’s how it became less hard.

All right. Second one. One thing that surprised me about my child’s resilience was…

One thing that surprised me about my child’s resilience was how natural it came to him. It was a part of his essence. So, I mentioned the time that the doctors were around his crib and had thought he’ll never walk again.

And the next day he did. It was natural for him to be. Do something so hard and get up and start again. He did that for his lifetime. One time he was sick with pneumonia for four months. And I thought, okay, today, and today, and today. And he was home for those four months, so, his oxygen was just at that level.

The fatigue was debilitating. He would wake up, try and eat, And go lay on the couch and we would pull the sofa bed out and he would watch a movie that made him grin or chuckle or stay awake for a little bit longer. He did that for four months, time and time again, nothing stopped him until he decided, I think I’m tired.

It was the same thing, how natural, he just got up and said, Today, I am here, let’s go, how are we going to play alongside every hard thing? And resilience means you’ve done something hard and you get up. And for him, it meant, I’m going to find joy.

I still can’t get over at age two that not even 24 hours, he’s told he’s not going to do this.

And he’s, they’ve got to find a helmet to keep him safe now because not only can he do it, but he’s going to go not walking, but climbing over the top of the crib. All right. So, the last one that I have for this section is if I could tell parents who have a child with a degenerative illness, one thing it would be…

If I could tell parents who have a child with a degenerative illness, it would be to be in the moment. Again, everything I have learned about this was being alongside Dallin. And when I saw this most powerfully is when he was skiing on a mountain. And he went from toe clip skiing, which meant they really did put a clip on his toes of his skis, when he was four and five.

To flying down the mountain in tuck with the instructors flying out him. I was never invited on the mountain with him. He would be, I don’t think so. You are not invited to, at the end of his skiing experience, he was in a bi-ski, which means he was sitting and had outriggers with somebody pulling him along.

And he went down the mountain one last time, flew down the mountain on a black diamond, which means it was a pretty big hill. One time he signed finished to the instructors. They knew him very well. We had been on the mountain for a dozen years. He signed finished. And they listened.

Julia, that, that’s been fantastic advice that you shared with us. Are there any projects that you’d like to share with our audience, and tell us how they can get in touch with you too, if they want to follow up with any questions for you.

So, I can be found on social media, I’m on Facebook and Instagram. I’m also on LinkedIn. I have a website at juliapearce.net, that’s P E A R C E.

I do have some things coming up. I have my book is on my website. The book is The Boy Who Became More Than We Could Imagine. I do have a second one coming. People have asked, so, what does it feel like after a child is no longer here? And I said, wow, yeah, that one is coming. It actually was planned at the same time.

And then I have another project that I have coming up for parents, family members, siblings, after somebody passes away. Those are the things I have coming.

Well Julia, thank, thank you for sharing your story with us today and, um, being willing to be so, so open and honest with me.

It was a pleasure. Thank you so much.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Mind over matter: The Path to the Paris 2024 Paralympics as a Blind Swimmer!Show Notes:Evan Wilkerson: A Rising Star in 2024 Paralympics SwimmingIn a recent interview, 17-year-old Evan Wilkerson shared his inspiring journey towards the 2024 Paralympics in Paris. Despite being visually impaired, Evan has excelled in swimming, showcasing remarkable determination and talent.

Hailing from Wake Forest, North Carolina, Evan began his swimming career at the age of six and is now a member of the New Wave Swim Team in Raleigh. His classification as an S12 swimmer means he competes with other athletes who have moderate visual impairment.

A turning point in Evan’s career came when he qualified for the U.S. Paralympic team after a stellar performance at the Parapan American Games in Santiago, Chile. There, he not only secured a silver medal in the 100-meter backstroke but also surprisingly won bronze in the 100-meter breaststroke, an event he had minimal training for.

Evan’s journey to the 2024 Paralympics in Paris has been marked by intense training and unwavering mental fortitude. He emphasized the crucial role of mental strength in overcoming the physical demands of the sport. His dedication to his craft is evident in his rigorous training schedule, which includes early morning workouts and weightlifting.

As Evan prepares to represent the United States on the world stage, he expressed both excitement and nerves. He shared insights into the training camp he will attend before the Paralympics, highlighting the importance of altitude training for enhancing athletic performance. Evan’s story is a testament to the human spirit and the power of perseverance. His journey is an inspiration to athletes with disabilities and a reminder that with hard work and determination, anything is possible.

Support Evan’s Paralympic Journey: *https:/www.givesendgo.com/EvanCompeteswithTeamUSA/donate*

Follow Evan on Instagram: @newwavewilkerson_evan

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Evan Wilkerson is a 17-year-old athlete from Wake Forest, North Carolina, who will be proudly representing Team USA at the 2024 Paralympics in Paris!

Evan’s journey to the Paralympics began at the young age of 6 when he joined his first swim team. Despite having Leber’s Congenital Amaurosis (LCA), a form of visual impairment, Evan has never let obstacles slow him down. He currently trains and competes with the New Wave Swim Team in Raleigh, NC, and his dedication has earned him a spot on the US Paralympic team. Evan competes in the S12 classification for visually impaired swimmers.

When Evan isn’t in the pool, he attends the NC Virtual Academy and stays active at his local Church. In the future, Evan plans to continue swimming competitively while pursuing studies to enter full-time ministry.

*Episode #*101: Gold Medal Mindset: BlindSwimmer set to represent USA in 2024 Paralympics****Mind over matter: The Path to the Paris 2024 Paralympics as a Blind Swimmer!****###### (Recorded July 17, 2024)

Full Transcript of Interview:

Evan: The biggest surprise for training for the Paralympics has really been how mental it all really is.

Tonya: From lane lines to Paris. Take a deep breath and dive into the inspiring story of Evan Wilkerson, a 17-year-old Paralympic swimmer ready to conquer the pool and represent team USA in France.

Evan, welcome to Water Prairie.

Thank you for having me.

Evan, you interviewed with me two years ago during episode 21 in season one, and you shared with us then about having a rare genetic eye condition that’s caused you to lose a lot of your vision. And listeners, if you haven’t seen that interview, be sure to click on the link for episode 21 and watch that one.

He shared a lot during that interview about, uh, the adjustments that he’s made in his training methods as a swimmer. And he also talks a lot about tips on how to get your child started in swimming, especially if they’re visually impaired and if they want to get into competition, what, what they might want to do.

So the link will be in the show notes. You can go back and hear more from that. But I want to catch up, Evan, with where you are now. How old are you? What grade are you in school? Are you still going to the virtual charter school?

Um, I’m 17 now. I’ll actually turn 18 shortly after I get back from Paris, and, uh, I’ll be a senior this year. So that’s kind of exciting. One more year.

Are you making applications to schools yet? Or what are your plans for after graduation?

So not yet. Um, right now my plans are to finish up high school and then I’ll go out to Colorado Springs to go to the Olympic and Paralympic training center. And I’ll live there for a year.

Just because after 12 years of school, I’m kind of done with school, and I want a break. And so I’m just going to go and swim for a year and then I’ll go to college, which I am looking. But, um, finding a college that meets all the requirements that I want in a school is rather difficult, especially. When you want a Christian school that has a swim team, those are a little hard to find.

Do you know what you want to study yet?

More than likely, I’ll study some form of theology. Um, what sort that might be, I don’t really know yet. All I know is Something in that field, I guess. And, um, I want to be a youth pastor and maybe eventually work my way up to being a senior pastor.

That’s what I was going to ask whether you had an area of ministry that the two were, were looking at.

Well, that’s, that’s very exciting. I know you’ve always been in, been very active in your, your youth ministry at your church and awesome. I’m excited to see, see where you’re headed. The last time that we talked about your swimming. I went back and listened to, to the interview this week just to kind of catch up and make sure that I was remembering it correctly.

You had just competed in your first Paralympic meet in Augusta, Georgia, and you had been to Colorado and Florida for national swim meets. And so during that interview at the end, you shared some of the goals that you were working toward. I don’t, I don’t know if you remember, or if you’ve, if you’ve listened to it yourself lately, but one of your goals was to meet the emerging times that you needed to get to the higher training level. How long did it take before you met those emerging times?

It was actually very soon after we did that interview. We had the 2022 National Championships in Charlotte. And so I went down there with one of my coaches, the head coach of my club team came down there with me and, um, a couple of my friends came down as well and had a great meet and got one emerging time standard, and then I ended up getting, uh, two more in April of 23.

Listeners, Evan has been breaking personal best times since we met him last. It’s been almost every time that I see you swimming in another meet, you’re hitting another personal best, um, which has been really exciting to see, to see breaking out and just really going. In fact, I think you just met another one. Is that correct?

Yes, I just actually met, uh, three more. Um, if you want to get technical, it’s technically five more. Um, since it was a prelims and finals meet, but I only swam three events. Um, those events were a hundred backstroke, a hundred freestyle and a hundred butterfly.

And I ended up having best times in all of those every single time I swam, um, except for one time in the hundred free.

So the emerging times you hit right away, when did you, now let’s see, you Paralympic swim meet, but was that a. junior level. What was it before we met the last time?

So before we met the last time, it was mostly what we call open series meets, which is all U.

S. Athletes. There’s no time standards that you have to have to enter. Um, you basically enter, show up and swim. The only thing you have to have is a national classification. I had been to one World Series meet before then. I can’t even remember when that was. All I know was it was before we did our first interview, but, um, that was a pretty small World Series meet.

And that basically just means that other countries can enter and there are. Time standards, I think, but I’m not sure. Um, but that was a good experience to at least see a couple other international swimmers.

Was it listeners in the last two years, Evan’s been able to travel a little bit more. So you made the men’s U S team, correct?

Yes, I did. Last year. It was last November. Yes. Um, we went down to Santiago, Chile for the Parapan American games. And first event was 100 backstroke, which is my best event. It’s great. 100 back is the first event of the meet. And, um, I ended up dropping about two seconds and getting a spot on the national C team.

So C team. So is there an A, B, and C?

Yes. Um, I’m currently on B I’m very close to a,

and then, um, Chile, you meddled there, didn’t you?

Yes. I got a silver medal in the 100 backstroke. And then somehow, I don’t know how this happened. I’m not a breast stroker, . Um, I got bronze in the a hundred breaststroke, um, which I still don’t even know how that happened because before that me, I had trained no breaststroke, my breaststroke training, even if I did train, it usually consisted of a hundred with a 50 kick and a 50 swim.

So there was. Almost no training going into that.

So, yeah, because your, your events are the other three, right?

Yes. Um, 100 free, 100 back and 100 fly.

So how did you even get into that, that heat?

Basically, what happened was a lot of us as S12s, we will swim up to S13s. And so what that means is, um, as an S 12, we’re kind of in the middle of S 11 and S 13.

Um, S 13s tend to have a lot more vision than us. Almost every single 12 who went to that meet did, was we swam up, we had good enough times where we could swim as S 13s. Even though we were technically still 12s. And be able to race in that heat.

Listeners. We’re going to be talking about the, the, the S 12 as 13 that he’s referring to in a few minutes.

So, um, so stick, stick with us and, and you will learn more about that in just a minute. So having, first of all, congratulations on qualifying for the Paralympics in Paris. I mean, those who clicked on this, they’ve already seen the title. They know that the surprise is that you did make the team, but I want to find out a little bit more about that.

You were swimming. Um, back, butterfly and free, right? Yes. Okay. And did you qualify for all three strokes?

Yes, I did end up dropping a whole lot of time and qualifying for all three.

Nice. Nice. Let’s talk a little bit about the team itself. So, um, so in looking at the US. Paralympics team that’s going to Paris.

So that’s because, because I know you, you swim in a lot, a lot of different teams with, with different groups, but the thinking of the, of that team, do you know how many swimmers are on the team?

Yes, there’s 33 total. Um, there’s 12 men and 21 women.

Wow. Why, why so many more women than men?

It’s complicated.

The way that slots are assigned for swimmers is in total, there are 650 available slots for both men and women. So in total, it’d be 1, 300. So how those are allocated is if you have four swimmers in the top eight, that gets us four slots. And then if we have nine swimmers from ninth place to 16th place, that gets us another 4.

5 slots. And then anything below that counts as 0. 2 of a slot. So. We ended up getting 12 men’s slots and 21 women, just because one, we have a lot more women swimmers than men. And two, the women swimmers we do have are placed, um, generally a little bit higher than some of the men we have.

When you’re talking about how they’re placing, that’s,

That’s their world ranking.

What is your current world ranking?

Uh, sixth in the hundred back.

Wow. That’s impressive.

Thank you. It’s, it’s been a lot of work.

So you’re sixth in the world. Is that, but you’re on the B team?

Yes, that’s correct.

How many men are on the A team right now?

We have exactly two men on the A team right now.

Oh, okay. Okay, so it’s not like there’s 20 men ahead of you.

No, no, no, no. Um, the way that works is the national A team time standard is the same as third in the world’s time in each event. So, basically, you almost have to be top three in the world to be on the A team.

So, of the group that’s going, you have members that are A, B, and C?

Yes, we have members from all three teams.

Of the group that’s going, what is the age range? Like, who’s, who, who, or how young is the youngest swimmer?

We have me as the youngest, and I’m 17, um, and then we have people going all the way up to mid 30s.

You told us that the three events that you’re qualified for, will you be able to be part of a relay team as well? Or do you know that yet?

Yes, we will for the first time in eight years have a VI relay at the Paralympic Games. And we’re going to do the 400 freestyle. So we each swim 100 meters of freestyle, which that’s going to be, a rough day because that’s the same day as the individual 100 meter freestyle. So, um, that’s going to be a whole lot of freestyle.

Yeah. But you, you do more than that in practice

all the time. Yes.

You reference the S 12 S 13. Can you explain the disability categories for athletes in the Paralympics? Not just the swimmers, but, um, but the other category too. Can you tell us a little bit about that?

Yes. So. For other sports, it’s a little different.

Um, especially when you get into things like wheelchair basketball, where you’re only going to have people in wheelchairs or goalball where you have to be blind. Um, but for swimming, we have S1 through S14. So, S1 through S10 are your physical disabilities. Um, so amputees, viralysis, anything that physically impacts your body.

11 through 13 are your visual. So, 11 is the lowest and 13 is the highest. So, if you’re an 11, you have to wear blackout goggles to kind of even the playing field because How the 11s work is they have light perception all the way down to total blindness. And so someone with light perception is going to have a little bit of an advantage over someone who’s totally blind.

And so they all just S12 is what I am currently, uh, more than likely I’ll end up being moved to an 11 at some point in the future. But for 12, we swim with regular clear goggles, um, and tappers are optional for 11s that are required. And then 13s are more your low vision. Um, which that can be. A little shaky, depending on your classifying panel.

Um, if you’re because you can be borderline, like, you could be a borderline 13, kind of teetering on the edge of a 12 or, you know, we’ve had situations where someone’s been a 13 for a long time. And something happens, and they end up getting classed out of Paris sport, because. Either the panel things they can see too much, or they somehow gain vision.

Um, and then as 14 is. More of your intellectual disabilities. Um, I’m not super familiar with what disabilities are going to make up the S14 category, but, um, there are like some mild. Um,

I’m, I’m looking at the world pair swimming website as you’re talking through these and listeners, those on the, on the YouTube video, I’m going to put a link in the show notes to the, the page that I’m looking at now that gives you more detail about each of the different, um, classes.

And I’m also going to put in a link to the codes of exception, and we’re going to talk about that in just a minute, but Evan, I’m looking at this and it has like under the vision impairment. Classes. It has S and sb. What is sb?

Under each classification, there’s S, S, B, and sm. So S is your regular. Um, that just covers fly back and free.

SB is for breaststroke and then SM is for individual medley. And basically what that’s for is for the VI classifications, it’s not going to affect too much. But for other classes, especially the physical classes, Um, breaststroke has a much more different movement than any other stroke, especially in the legs, and so a lot of the times, if you’re, say, an S9, you might be an SB8, just because of the movement of breaststroke might make your disability more pronounced, and so they might move you down just for that one event.

And it’s the same for SM because Medley contains breaststroke. Uh, but that’s not always the case. It just depends on how severe it is and kind of how you deal with it with the, uh, event that contains all four strokes.

The exceptions that I was talking about, you’ve mentioned the tappers. What are some of the other exceptions that we might see in the VI Paralympics?

So specifically for VI, the only exceptions we really get are, we have a guide when we’re going up to the blocks. Um, that guide is oftentimes the same person as who our tapper is. And then for relay starts, we’ll have a starter, um, and they just hold our ankle and they just let go when we’re supposed to go.

When you’re in Paris, who’s going to be tapping for you?

When I’m at an international competition like that. Um, so that’s of course your Paralympic games, your Parapan American games. World championships, Pan Pacific games, all that kind of big stuff. Um, you can’t provide your own tappers. And so the team has a whole bunch of coaches.

They travel with us. Um, they work with us, they train us, and then they also serve as our assists while we’re at a meet. Um, so for me, of course, that’s tapping. And what I’ll do is, um, I’ll meet with a lot of the coaches. They’ll try tapping me because a lot of the times you’ll get people who you really, really like it when they tap you because they do it just right.

And it feels great. And then you’ll have some people where you’re like, Oh my gosh, please don’t tap me in a race. That was bad.

Well, I was thinking about that. It could make, it could make or break a competition if you have the wrong tapping.

Right. And it often does. And so what I’ll do is I’ll go through all the coaches.

They’ll try tapping me. And then since I’m the only S12 going also, I’ll get first pick among the tappers, um, for my event. And there are 2 or 3 people who have tapped for me before that. I know are going. Um, and so that makes the process a little bit easier because I know these people, they know me. Uh, we’ve worked together a bunch before. So that’s. It makes the process go a little smoother.

When do you leave to go to the training center?

I actually leave this Sunday. So that’s really exciting. Um, also very hectic trying to pack everything I’m going to need for three or so weeks. And hoping I don’t forget anything.

When you leave on Sunday, will you be back again? Or will you go straight to Paris from there?

I will be back again, just to see family, see friends, all that kind of good stuff. Repack and then we go to Germany for. Time zone, acclimation and training. And then from Germany, we go directly to Paris

. So you have enough some time there before going while you’re at the training center. Do you know what the schedule will be while you’re there?

I’m going to be in the pool six days a week, and then wait. Training times are pretty much just up to me. The rest of it is very up in the air. And it kind of depends on what I do, what I opt into, what I opt out of. And then if there’s any appointments that I want to do, because they.

They will provide basically any sort of sports medicine that we want, um, massages, chiropractics, anything like that.

Are you going to be traveling on your own or is anyone from the family going with you until you get checked in?

No, I’ll travel on my own. For most of this process, actually, um, my family will come to Paris, but I’ll already be there.

I know you’re excited about going. Are you nervous about going at all? How are you feeling?

I am a little bit, um, just because it’s not every day that you get up and, you know, you race people who are first, second and third in the world on international television and really hope you don’t screw up. But as far as the actual swims go, you know, I’ve kind of conditioned myself.

You know, it’s just another swimming, swimming is my job. It’s just another day in the office, just on a bigger stage.

Um, I mean, you’re, you’re talking about wanting to do this for, for a year after you finished high school. So yeah, this is, this, this is your, your, your chance to not just shine, but. Just to give this a try and you know, what, decide what role this is going to play for the rest of your life, right?

When I was your age, if I were about to head off for three weeks, that’s like going to camp for three weeks. So a lot of fun will be there. You’re and, and you’re going to be in what my son always calls us happy place with baseball. You’re going to be in your happy place in the pool with like minded individuals,

Right. Right.

The support of the trainers there, Is probably gonna be more than what you’ve maybe seen before. I don’t know if you’ve been in that environment before.

I have, um, I’ve actually been up there several times before, um, for about a week, each time they try to get the national team up there a little bit, just because one, the altitude is so high, it’s about six ish thousand feet, give or take.

Um, and when your body’s at altitude, it’ll do some strange things that are very helpful when you come back down from altitude and, um, it’ll give you more endurance. It’ll strengthen your cardiovascular system. Um, even more red blood cells. Lots of really good stuff. That’s really helpful for especially me, like Paris, where you want to be your best, it’s good to train at a higher altitude first.

I’m going to transition. Now, each of my guests, the season have been giving some advice to our listeners by finishing some open ended statements. The first one that I have for you is the biggest surprise about training for the pair Olympics has been…

The biggest surprise for training for the Paralympics has really been how mental it all really is.

You know, when you think of sports, a lot of people, especially spectators, nothing against you spectators, just saying, um, a lot of you guys see the physical part of it. Um, and a lot of it is mental. I tell a lot of people swimming is about 2 percent physical and 98 percent mental. Um, it’s hard to get up at 4 30 in the morning in the summer to go train and then to come back home and lift weights.

and repeat for months. Um, but really it’s not physical. It’s mental because it would be very easy to lay in my nice warm bed. Even though I’m not really tired, I have plenty of sleep. Um, but you don’t want to get up that early. Um, and go jump in a cold pool or a very hot pool, depending on where we’re swimming and work because a lot of us just want comfort.

Um, and so that was a bit of a big surprise to me, especially in the last couple of years. I’ve started figuring out, Hey, this whole thing is just a mind game. If I just play the mind game, we’re good. We’re going to make progress.

So the next one I have for you is the most important thing I’ve learned about myself throughout this journey is…

The most important thing I’ve learned about myself throughout this journey is I can take a lot more than I think I can. And that’s really important, especially from just from a swimming standpoint and also from a life standpoint, um, from a swimming standpoint, it’s more of going out fast as hard and you don’t want to do it, um, because you don’t think you’re capable of doing it right.

But in life it’s the same thing. You know, you don’t want to do. Such and such task or go to this job interview or be on a podcast or anything like that, because, you know, a lot of us just think we’re not really qualified to do it, or we have what’s called imposter syndrome. And I’ve really learned about myself is.

You know, it doesn’t matter what my mind says. If I think I can do it, I should just do it. And even if I think I can’t do it, I should just do it because what’s the worst that can happen.

Right. If you, if you don’t shoot for something, you’re never going to reach it. Right.

Right.

And along that same line. If I could go back and tell my younger self one thing about pursuing swimming, it would be…

If I could go back and tell my younger self one thing about pursuing swimming, it would definitely be to start waking up early and training more because really, in the past couple of years has been the only time.

Well, not the only time, but my training load has gone up a lot, um, mostly because I’ve started figuring out ways to kind of cheat the system, um, ways to add more time to my day. And, you know, if I could go back and tell my younger self, hey, you need to start getting up earlier, especially when you’re in school and you need to go lift weights.

And then you need to do school and then you need to go swim and then you need to come home and then stretch and then do it all over again. Um, that’s really important. And even in the summer, it’s kind of reversed. I get up, I go swim, I come home. I do whatever has to be done that day. I work out, I stretch, I repeat.

Um, So I think I’d really just tell my younger self, get up early, start the day. Um, don’t be slack and just do the work.

So the final one is success for me. Isn’t just about winning medals. It’s also about…

Success for me. Isn’t just about winning medals. It’s also about. The experience and kind of being up on the world’s largest stage and being able to represent my country, uh, to the best of my ability and to go out there and really just see what happens.

And it’s also about kind of, I guess, trying to spread a little bit of my mentality of, if you can think about it, you can do it. So, you know, get out there and do it and don’t quit when it gets hard. That’s really important to me. That’s kind of what’s got me through a little bit. And also, I guess just to be able to represent God as well, because he’s the one who’s put me in this situation.

Um, I could not have done a lot of this on my own.

Before we go, share with us your social media so that those that are listening and want to follow your journey can, can know, cause I know you’re on Instagram. Is that your main social media?

The main way. For me is Instagram. Um, it’s new wave, Wilkerson underscore Evan.

Um, all that’s one word except for the underscore. Um, and it should pop right up.

I’ll put that, that link as well in the show notes for, for those who want to follow you, cause I know you’re, you’re, you’re really good about posting things. As you’re going.

Yes. I try to always post whenever I’m traveling or. If there’s some terribly hard set we do in practice, a lot of the times I’ll throw it up on my story and, um, I try to stay connected to the people out there.

A couple other questions I had for you. You said your family’s going to be able to go to Paris. So is everyone going?

My mom, my dad, my sister, and my grandma, which is my mom’s mom. They’re all going to go. Um, so that’s really exciting. Uh, it’ll be good to have all of them there.

Will you check in with us while you’re training so we can, can update our listeners on what’s going on while you’re during your training and while you’re in Paris?

Absolutely. I’ll be posting while I’m training. Um, posting in Paris, posting after Paris, posting in Germany. Um, so I can send you those, I can send you extra stuff.

And then whenever you get back, let’s see if we can, can have you come back in and give us an update on how everything turned out. Of course, everyone’s gonna be watching you anyway, but I know they’re going to want to hear that.

Um, the other thing I wanted to say to listeners. Evan and I were chatting before we started recording. He is open to speaking publicly about his experiences. So, um, so connect with him if that’s something of interest to your organization. If you have a group that, that you’d like to have him share what he’s learned and what his journey has been after he gets back.

Yes. If you want to reach out now and schedule something, reach out after. Um, it’s all the same.

And if you’re hearing this later, after everything is said and done, um, always a good, a good topic to have a young adult come out and be able to talk about something like this. So, um, So, yeah, so that’s, that’s nothing I’m, I’m, I’m hoping will work out for you.

Well, Evan, thank you for coming back in. I’m very excited for you and we’re going to be cheering for you.

Thank you. Thank you for having me on again. It’s been great to be able to reach out and try to give back a little bit. To the disability community,

Evan’s story is a powerful reminder that anything is possible with dedication and a positive attitude.

As Evan prepares to take on the world stage in Paris, there’s one way you can be a part of his incredible journey. Evan’s family is working hard to cover the cost of training and travel to Paris to cheer him on. A family friend has set up a fundraising page to help ease the financial burden. If you were inspired by Evan story and want to support his Paralympic dream, please visit the link in the description below.

Every contribution, big or small, makes a difference. Thanks again to Evan for joining us today on the Water Prairie Chronicles. We wish him all the best in Paris. Don’t forget to subscribe for more inspiring interviews and I’ll see you next time.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

https://youtu.be/uECbHOiUAKQ###### The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Essential Tips for Parents & Students With ADHDShow Notes:***********College for Students With ADHD: From Feeling Lost to Finding Your ‘A’ Game (Free Resources Included!)***********This interview explores the challenges and opportunities faced by students with ADHD transitioning to college. College professor and ADHD coach Dr. Lauren Kerr-Heraly shares her insights on:

• Executive function skills: These crucial skills, like time management and organization, can be underdeveloped in students with ADHD. Lauren emphasizes the importance of identifying and strengthening these skills for college success.

• Building a support system: Students with ADHD benefit from a strong support system in college. This can include disability services counselors, tutors, coaches, and of course, parents. The interview highlights strategies for effective communication and collaboration within this support network.

• Self-advocacy: Lauren stresses the importance of students taking ownership of their ADHD and advocating for their needs. This includes reaching out to professors and disability services to discuss accommodations.

• Positive approach to ADHD: Focusing on the strengths of students with ADHD is a key theme. Lauren highlights the creativity and fast thinking that can be hallmarks of an ADHD brain.

Bonus resource: Lauren offers a free infographic on her website, Altering Course outlining the “four S’s of college prep” – essential executive function skills for transitioning to college.

This interview is a valuable resource for parents of children with ADHD, high school students with ADHD preparing for college, and college students with ADHD seeking strategies for success.

Download Lauran’s FREE Infographic! College Prep Essential Skills

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Lauran Kerr-Heraly is an award-winning educator and author, mom of an ADHD kiddo, and advocate for inclusivity. She has worked in college readiness in American high schools, taught in international and British schools in England, and currently serves as a professor in an American community college. She helps students and parents develop a holistic approach to college success, which includes a focus on essential skills, executive function, and emotional awareness. As an educator an executive function coach, she works with neurodiverse students and students with disabilities.

*Episode #*100: College Success for Students With ADHD****Essential Tips for Parents & Students With ADHD****###### (Recorded May 22, 2024)

Full Transcript of Interview:

Tonya: Lauran, welcome to Water Prairie.

Lauran: Hi there.

It’s nice to have you here today. Listeners, we’re going to be talking about, um, ADHD, executive functioning, college, all of the things that, that my family talks about a lot. And I love meeting another mom, another professional who understands some of the things that, um, that a lot of you are dealing with too.

We’re going to have a great time. Thanks, Tonya.

Let’s just jump in because we, um, we’ve already said we’re going to talk about ADHD, but we have listeners who have heard of ADHD before, but other than the, the letters, or they may know the full name, that may be all that they know.

And there may be some preconceived ideas that aren’t really accurate. Can you kind of in a nutshell tell us what ADHD is whenever a parent’s hearing those, those names and those, those letters?

Sure. So it stands for Attention Deficit Hyperactive Disorder. And there’s a, there’s a pretty large campaign to get rid of the “H” in that because the hyperactivity doesn’t describe everyone.

There’s multiple types of ADHD, there’s hyperactive, there’s inattentive, there’s combined. Girls, especially often don’t get diagnosed as early on because they might not show the hyperactive side of it. Um, but their focus is still an issue. So they’re typically people with ADHD have a hard time focusing.

They have a hard time regulating themselves and might have some additional difficulties with things like transition and sensory. So my family’s story is that when my daughter was seven, um, the, we were having, you know, some of the focus issues, a lot of emotional regulation issues that led us to talk to our pediatrician who suggested we get her, um, Um, tested for ADHD and it was pretty much, uh, you know, the, the neurologist spent about three seconds with her and was like, yeah, this is what she’s got.

And then ran all the tests. And, um, so it was, it was pretty night and day once we got her the proper treatment. And um, Behavioral modifications that she was a lot happier. She was not so frustrated doing better in school, et cetera. And in that process, the doctor said, so which one of your parents can’t focus?

And she said, daddy, daddy. Um, so this little seven year old, um, he told her, well, he should get tested. And my husband had kind of always suspected this about himself, but again, he’s not, he didn’t have the age. He didn’t have the hyperactivity. Um, so he did well in school. He never got in trouble, but he really struggled.

Um, and so he went and got tested and then he again got treated. And at 40, he said, I can’t believe I’ve lived my whole life without the, you know, without having the proper, um, treatment assistance to deal with this in my life. So, um, so it can present differently in different people. I talked to someone recently who said, you know, our, our kid is having X, Y, Z issues, but he can focus so well.

And what they meant was he could hyper focus or the, the term for it really is perseverate, um, that you focus on something that’s not helpful to the point where you can’t be pulled away from it. And that actually is a type of inattention. So Because it presents differently and it’s a very complicated, it is a spectrum.

Um, it can be difficult for some people who haven’t seen it or been around it a lot, um, to kind of diagnose, um, I don’t mean diagnosed, but recognized, I should say. Um, You know, it’s kind of funny because as a college professor, I have a lot of neurodiverse students have for years. And I couldn’t even recognize that my own child had ADHD because she’s my kid, right?

You know, this is why, even though I’m an executive function coach, I have, I do not coach my own child, that’s for someone else. So it does present differently. And when you’re close to a situation, it can be difficult to see, to think, you know, um, My child might have this. My spouse might have this. I might have this because it is a disability.

And that is something that it took me a while to kind of come around to, even like I said, having taught neurodiverse students for years, the fact that it is a permanent disability that can, of course, like the brains and muscle, like anything else, right? Like, there are a lot of things that we can do to provide coping mechanisms, et cetera, but it doesn’t disappear.

So that did take a It’s kind of a lot for me to get used to, but we’re all much happier now that we, we know both the disability side of ADHD and the superpower side of it.

It’s interesting too, in, in your family where you have the two that different ages, male and female, everything else with that and, and presenting differently too.

The studies are pretty interesting lately that it’s a, it’s a pretty high percentage of people who have ADHD. It’s also genetic. Um, you know, it’s not a hundred percent, but the more they study it, the more they’re seeing the presentations in, you know, multiple parts of multiple generations.

Well, and a lot of our families that are listening, they may have another disability that’s, that’s diagnosed, but they may be seeing some of the behaviors of ADHD and that may not have been recognized yet.

And, um, and that’s, that’s why I, I like bringing this topic in because It, you may be a parent that’s listening and this is the diagnosis and it may be all that you can handle right now, but we may also have others who are also looking at at multiple issues that that they’re trying to balance. And it gets hard sometimes for a parent to know, where do I focus first?

And how do I. How do I help my child the most? And I think there’s, and you can correct me on this, but I think there’s times of life that we need to focus more on them during some of those transition times and all maybe to give them some more skills.

Well, yeah. And transitions are huge and I do want to talk about that.

And I’ll just mention that when it was something like ADHD. There’s usually what we call a comorbidity, right? That there’s something else going on. Maybe it’s anxiety. Maybe it’s sensory processing disorder. It could be, um, oppositional defiance disorder. Lots of things can go on at once. But most of my clients will say until they treat the ADHD, they can’t treat the other things.

Um, because. That is what is taking their brain in so many different directions and it’s difficult to focus. So once that they can kind of focus, then they’re like, Oh, wait, this is why I’m anxious. Now I can work on the anxiety. Um, so I do encourage people if, if you suspect ADHD, do get tested, explore treatment options.

Um, You know, for us, it’s been a combination of medication, behavioral modifications, and changing our lifestyle really, um, that has worked for us. So, so I do think that there’s something to focusing on supporting the ADHD side and then that kind of freeing you up to to be able to help them, the other issues.

So, and along with that too, my son, now he’s, he shared his story during season one. So I can, can freely talk about this, this, this part of his life, but part of that conversation between him and I, um, we were going back through when he was eight, the, the psychologist. couldn’t tell whether it was ADHD or anxiety.

And so he did not have the, the diagnosis of ADHD until he was in middle school, but it was, it was, it was on the, it was questionable on it. And so they addressed it as anxiety. First, the anxiety is still there. ADHD definitely is there, but he was the kid that in kindergarten. you’d look around the room and his place was always the one that just exploded.

You know, so there, there were markers there pretty early with some organization issues that, that were not age. Um, uh, well, what, what is the word I’m looking for? They, they, they, they weren’t in line with it with his peers at the time. And, um, and so as he got older, it was easier for that. And I, I remember back during that time, there was a certain age that if the symptoms weren’t there by that age, that it wasn’t ADHD.

Is that still part of it? Like if it hasn’t shown up by age seven or whatever that was?

Not that I know of. No. And part of that is because it is a spectrum. And like I said, some, some of the markers that we used to live, that we used to sort of use when I was in elementary school ages ago, again, was like hyperactivity, right?

And that’s it. Um, so like I said, my spouse got diagnosed at 40. Um, and. Not because he And really because of my daughter, right? Um, so no one ever suspected that he had ADHD, you know, he kind of, like I said, maybe thought about that, thought this about himself, but it’s, it’s more of a, something that you probably have and maybe have coped with, or at it’s been kind of in the background because you’ve learned to deal with it or because you didn’t have, you know, Um, maybe an environment where it was super obvious, something like that.

So, but as you know, and I’d have to check the research on this, but as far as I know, that, that is a big part of it.

Well, the other thing too, that you mentioned that I found interesting, you said that they’re, they’re talking about. Removing the, the hyper part of it out of the, of the, the name. We had years where we had the ADD and the ADHD and ADD, and then now it’s only ADHD.

So we’re going to go back to the ADD now, or we’ll add some other letters in there.

Probably some other letters. Yeah. And it, you know, it’ll take the scientists a while to kind of agree on, on how to do it. But I know for a lot of people with ADHD, they, they feel like that doesn’t really define them. So there’s kind of a movement.

Yeah. So my, my understanding was the H did apply because of the hyper focus, not necessarily hyperactivity. As in running around and swinging from the rafters.

Yeah. Your, your brain is hyperactive. Yeah.

Now my daughter is not diagnosed. Um, I, I, if she were to test, it might come back that she does, but, and as you say, it presents differently a lot, a lot of times in girls.

But she was three years old and was reading already and would sit down and would do an entire first grade workbook from cover to cover without stopping. And it was hard to get her until she finished it to get her to move and to do anything else. So she always has had a very strong hyper focus, but it was being a girl.

It was always in the more appropriate. Area where you would get encouragement from that because, you know, she’s doing, she’s doing schoolwork when she’s little and she’s wanting to do, you know, she wasn’t watching TV and never coming to dinner. It was, was different. So we weren’t picking up on that either back then.

Oh, yeah, totally. And, and sometimes, oftentimes when we notice or, you know, when we suggest getting tested or something like that is when people are struggling in a pretty big way, whether it’s with school or their relationships or regulation or whatever. Um, so sometimes it takes us a while to kind of figure out what that is.

And people with ADHD often are very intelligent, um, you know, very high IQs to the point where, um, They, you know, they might need to be a grader to a head, but then their brain is probably not ready for that kind of a social environment. So there’s a catch 22 there as well. And that can be challenging.

When we’ve talked a little bit about the, the executive functioning skills being behind in past episodes. And, um, and so I wanted to talk about that as well, because, um, it’s kind of a good, a good point here with it, where academically, mentally, they may be, Beyond their peers, but like you’re saying, the social, social skills, knowing when to, to get up and down from their seat in the classroom.

A lot of times can be a reason that our kids are getting written up or being well, in my son’s case, he spent 33 days and in school suspension for. throwing away paper at the wrong time during his seventh grade. So, um, and that was the worst that the teachers ever told us that he did. It wasn’t anything really inappropriate.

But, um, but that, that part of it does start showing up, I think, more as they get into those middle school years when their peers are starting to do more independent things and, um, and can read those cues. A little bit faster with it. So, um, so executive functioning skills, how, how is it, is it a three year gap?

Is there a definite age difference there or is it individual to individual?

I think it’s individual to individual. And part of it is how their executive function skills have developed. You know, one thing that I emphasize when I talk to my, you know, Clients is that the executive function skills that are demanded of a middle schooler or a high schooler or a college student far outweigh what they can actually do, what their brains can actually do.

Um, so if they’re getting overwhelmed and they’re falling behind, it’s because their brains can’t keep up. And that’s for a neurotypical child. So for someone with. No, you know, someone who’s neurodiverse compound those, right? So the, what helps is to have the skills and oftentimes when they’re thrown into middle school or high school or whatever big transition it is, you know, that we call it, um, in higher education, we call it the unwritten curriculum that we just sort of assume that they’re supposed to know, right?

That they’re supposed to know how to take notes. They’re supposed to know how to organize, know how to manage their time. And they, uh, they often don’t. So. Um, because there’s not direct education on how to make those jumps with those skills. That’s when we really see students struggle. So I have clients who have ADHD or, you know, some other kind of neurodiversity and because they’ve been taught the skills and they’ve been taught some tricks on how to stay focused and organized and manage their time and give themselves grace when they don’t, then they actually do really well.

Um, so it’s less about. What they’re, you know, is there a definite, we’re two years, three years behind, like, is there a clock somewhere? Right. And more about, um, what you’re sort of being recognizing what you’re able to do, but also being, being very, you know, encouraging to yourself about what you are actually capable of doing.

You know, it’s interesting. One of the, um, one of my favorite things to do is group coaching and bring different people together of, um, generally they’re similar ages, but they, we talk about executive function skills and the group that I’m working with right now, working memory is a big part of executive function and that’s being able to kind of organize things in your head.

Um, that’s being able to, you know, understand systems of language of, um, of social systems, et cetera. But it’s also just plain old memory. Right. And that’s one of the things that we start with. And you know, that kindergarten toddler matching game that with the cards, right, where you turn over one card and you have to remember where the other one is, but it’s not a skill that’s actually taught so much.

Continued through education. And so, we actually spent quite a bit of time with this group working on just memory skills because they were, you know, they were saying, well, I can’t remember what chores I have to do. I can’t remember what, um, assignments that I have to do. And for one, we work on the organization.

We work on having a system that they actually like and will follow through. Um, most kids hate a plant, hate the planners that they’re given. And, you know, so, so they don’t have to use them like, well, so we come up with something else. Um, but then it’s also just like. Well, your memory needs to be put back into shape.

You need to exercise that memory. So, some of these things seem maybe quote unquote basic, but they’re actually not if you’re, if you’re not practicing them. So

I know for my son, he uses his iPhone and texting, um, as part of his, it’s a system that he’s put together. But if he has an appointment, he texts it to me.

And it’s not for me to remind him he has the, it has a documented now. And so, then he can go back cause he knows, he knows it’s coming up next week. He doesn’t use a calendar. He doesn’t use anything like that, but this is what’s worked for him.

Well, and that’s why I started my business because as much as I try to help my students with executive function skills, sometimes, you know, they’re in their twenties and they don’t have the basics. And that’s, that’s what I, that’s why I started going backwards, right? I’m work with high school students. I work with middle school students to try to help them with these skills.

Because even if a school has a study skills class, for example, or a transitions class or something like that. They’re, they’re gonna give them great information, but they’re, it’s not gonna be tailored to what they need. Um, which is part of what I see with my clients, my young clients especially, is that if they don’t wanna do something, they’re not gonna do it.

If it’s boring to them, they don’t wanna do it. So like, we have to figure out a way to make it interesting enough that they’ll want to actually do it. And we do that through a lot of, you know, coming up with small rewards that they like and making. Sure that they have something to get their brain going like we call this dopamine hacking that we have them get a little bit of feeling of accomplishment before they even start something where they’re not going to start.

Um, so I, I think that is. One of the benefits of having an executive function coach is you can have someone sit down with you and say, like, this is where you want to be. And I asked them this at the beginning of our sessions, you know, how do you feel now? And how do you want to feel at the end of this? Um, and then what do we do to get there?

And sometimes it’s really simple little shifts. Um, some people feel like they have to do like overhaul everything, right? And I always suggest to start with one thing, because if you can get one small thing, And you feel some accomplishment from it, then you’ll be more willing to change other things. So.

Well, and I, and I love that now we have, I think the coaching system is more ready now where 10 years ago that wasn’t a thing yet. And so now parents and young adults who are in need of getting some direction and wanting some help, they don’t have to go to the school and ask and be told, well, we don’t do that here. There are other, excuse me, there are other options out there. And so having some, someone like you who, whether it’s virtual or in person, they, they can come and get that information that they need and to start working on those skills.

I’m just thinking how many kids at this, at the age where my son was really starting to struggle. If we had had someone like you working with him. From maybe fifth grade on, where would it be today? How much, I mean, he’s, he’s doing well. He, he has to work really hard to get the grades that he gets, but would he have to work as hard now if he could have started developing some of those skills? So, um, so parents listening, it’s worth looking at this type of information and to see what’s out there for you.

It is. Yeah. And I was surprised, but I shouldn’t have been when elementary school parents started contacting me. Um, because they’re seeing the same things already happening.

They’re already seeing the deficits in elementary school and they’re concerned that they’ll just multiply and they will. So, I’ve started expanding my services to, you know, to help elementary school families as well.

I think it’s great. The, um, you know, executive functioning skills can lag even when a child that doesn’t have ADHD.

Totally, they lag in all of us.

Is there anyone who’s perfect? Maybe there was one that’s in each class.

Well, this is why I don’t love the term neurotypical, right? Because it assumes that people that maybe don’t have a diagnosis or somehow have it all together. Um, and, and it often is people that. You know, have done really well in school that all of a sudden realized they don’t have that they have these deficits.

And then you have people that are just, their motivation is really lacking, but generally the motivation is lacking because they don’t have a structure that works for them to get them going.

Transitioning from high school to college is a, is a gap there. But once they get into college, now those supports that they had through their IEP team, um, mom’s not there anymore. If they’ve gone away, if they’re in community college, they may still be living at home.

But parents, you’re no longer going into the classroom with them. You’re not even going to the school to meet with disability support with them unless you’ve been invited to come in. So now your child’s out there and they have to do it on their own. They’re 18, they’re an adult. What do you have to tell these students and their parents about this transition?

How can they get ready for that independent part after having so much support through all those years?

I love that because, you know, I love to assume that parents and, um, high schoolers have a great relationship. Cause that’s what I, that’s what I look forward to with my kid. And it’s really important to have that warm, open communication when they’re at home.

Um, to ask questions like, I’m curious, and I noticed that instead of, you know, how can you possibly not have your homework done? How? Like, um, cause it is frustrating, right? But first of all, that gives you the warm communication, but it also puts a puts more of the onus on them. Right. So when they get to college, I see a couple things happen, particularly with students with ADHD and other neurodiverse students.

Some of them like to think they’re starting over. And they will not tell the professors that they have accommodations. Some of them won’t go to the learning support office and get their official letter because they’re like, I’m in college now. I’m in, I’m 18 or I’m 25 or however old they are. And somehow they think they’ve grown out of it.

You don’t grow out of it. Um, so I always tell my students, smart students, ask for help. Successful students ask for help. Please give me your letters because then I can help you. Um, so that, that’s my number one thing, because you’d be surprised how many of them halfway through this semester will tell me, well, everything’s late because of ADHD.

And I, well, I said, well, What, why am I just now hearing about this? So it’s really important that from the beginning, you’re having that communication with your professors. And if you’ve gone through the proper channels, then they’re legally required just like they are in high school to provide those accommodations.

It’s also important to advocate for yourself. I’ll give you an example of this. One of my students who gave me the letter and, you know, has, you know, been really good, but good about communicating. One of the things that we determined was occasionally I’ll have them do kind of, uh, at the end of the class, I’ll have them write for 10 minutes, kind of a reflection on what we’ve talked about.

And that was really stressful to him because there was a time limit and, you know, he has extra time on assessments and whatnot. And so, I told him he doesn’t have to do that. Like he, we can just talk about it at the end of class. And, um, So a few weeks later, remember also that your professors have way more students than they did in high school often.

Right. Uh, for me, I’ve got over a hundred students. So anyway, during this class, um, I, you know, I told all the students to do it and then I kind of got onto him. I was like, you need to be doing your reflection writing. And he very discreetly raised his hand and asked me to come over. And he said, I just wanted to remind you, he said, I didn’t have to do this.

And then, you know, we could talk about it. And I said, oh, you know what? You are right. Um, so that was a really good way of handling it. Um, because he didn’t draw attention to himself. I didn’t draw attention to him. We just had a conversation and it was. Something that was easy to deal with. Um, the other thing I’ll say is that with, with social stuff, it’s really important to get plugged in with people who will support you.

And it’s important that you get plugged in somewhere. Um, some people will go off to college and they’ll just, they’ll go to class and they’ll go back to their dorm room or in a community college like mine. They come to class, they leave, they don’t hang out. even if you have a job, even if you have care responsibilities, you need to be connecting with other people.

And there’s ways to do that that don’t take up your whole day. You know, I, I never assume that a college student doesn’t have to work or doesn’t have other responsibilities. Right. Um, but there are ways to do that. That, I mean, the most popular club at my campus is the anime club. Um, and not everyone can come to every meeting, but they are all really excited about anime and they.

connect on that level, right? So, there’s something for everyone. And the reason that’s so important with, um, for neurodivergent students is because part of executive function is emotional regulation and it is social skills. So, and I’ve got a free infographic that y’all can grab. Um, we’ll put it in the show notes, but it’s, um, I call it the four S’s of the skills you need for college.

And it’s about executive function, really. But one of those is on there is that social skills. And so if you’re not practicing those, Then they’re not going to grow. And if you’re not connected with other people, then you’re not going to have positive stimuli. Um, you know, find people that you can study with and actually study, not like your books are in the corner, but you’re playing video games.

Um, so that’s really important to get, to get plugged in, um, and to get the support that you need. And I would also say that, you know, my campus does a really good job about, you know, having workshops about time management and whatnot. Um, There’s TA’s. There’s all kinds of support services, and it can be very overwhelming to even learn what those are.

But there’s generally peer tutoring that’s included with your tuition, things like that. I have a student assistant who is great. Um, when students are afraid to talk to me, they’ll talk to her. Um, so find the support networks on campus. Um, Because again, successful students ask for help and smart students ask for help.

And the reality is that people with executive function deficits, whether neurodiverse or not, need extra help. And the jump from high school to college is big. And it doesn’t matter how old they are, because I have a, I have a wide range of student ages, right? Yeah. You know, from 15 up to, I think my oldest student is in her 60s right now.

Somehow a lot of them still think that deadlines are a suggestion. They are not. They are not. Um, so things like that, you have to be aware of how the expectations affect you. Um, whether that’s consequences and grades, or it’s going to affect your relationship with the professor, which then affects your future opportunities, et cetera.

So that is one part of executive function is the emotional regulation of, you know, knowing I have to reach out. I have to say no to this thing so I can study, et cetera.

I know with both of my kids, um, they’ve been in college for a few years now, so they’ve kind of worked all this out and they both started in high school.

You’re talking about having a 15-year-old, their junior and senior year in North Carolina, they’re able to go tuition-free to the community college. So both of them took advantage of those classes as well. So they, um, while they were home, we were able to walk them through the transition to disability services at the college while they were still minors, so we were able to kind of go with them, help them see how you have those conversations to begin with. But we didn’t go with them to talk to their teachers because we told them even at that age, they have to do this. And so we would help them write the letters. To, to get the email to ask for the meeting and all, um, but now they do that on their own.

They’re able to do that. And, um, some every now and then I’ll get, uh, a message from one of them asking, can you, can you read this for me to see if it sounds right? And, um, because they, they don’t want to, to push too hard, but they also want to make sure that they’re communicating what they need to for their disability support, but, um, but it, so your kids are going to mature as, as they’re doing this.

And in fact, my son and I just had a conversation today, you know, college is going to end one day and you’re going to be working in the workforce. You’re still going to have a supervisor, someone that has to be aware of your accommodation needs with a disability and you don’t want it to be. And this is what he was saying.

You know, I don’t want to be a weak link. I don’t want to be the one who is “disabled.” I want to be a contributing member of the team. And that’s what they’re learning during that college time is how do they do this in an appropriate way and still be part of the contributing factor to their team, whatever it is that they’re doing.

And um, so these are great, um, points that you’re making for parents to hear today for their kids to know as they’re going there. And I don’t know, we, I think we do have some high school kids who are listening to. So, they’re going to be able to get the benefit of this as well.

Well, I’m going to, I’m looking at our time and, um, I could keep talking on this subject forever, but, um, but I do want to get to our advice statements. And so I, uh, like I’ve done with our other guests this season, I have three open-ended statements that I’m going to ask Lauran to finish for us.

And she’s agreed to do this with us. So, are you ready for your advice time?

I’m ready.

So, the first one is the most important piece of advice I would give to a student with ADHD transitioning to college is…

The most important piece of advice I would give to a student with ADHD transitioning to college is to find a system of organization that works for you because you’re going to be asked to adapt and do a bunch of things and you’re going to get overwhelmed with the amount of things and you need to have a system that works for you that you will actually keep up with.

All right. So, number two, college success for a student with ADHD requires a strong support system. One key member of that team should be…

College success for a student with ADHD requires a strong support system. And one key member of that team should be your counselor from Ability Services, because they can help you determine the accommodations that you need, make sure that the letter of accommodation gets to the professor, et cetera.

Then it’s up to you to make sure, you know, that. that you’re getting what you need in the classroom, but that learning support counselor is going to be really, really significant.

And the last one as an educator and a parent, I believe the key to helping students with ADHD thrive is…

As an educator and a parent, I believe the key to helping students with ADHD thrive is affirming the way their brain works.

And I’ll explain that a little bit because sometimes we, we try to almost some of the support that I see for ADHD is like, well, how, how to get your child to not do this and how to get your child to whatever. And I would really prefer to approach it from the standpoint of, you know what? Your brain is amazing.

And this is how I start with my, my coaching clients. Tell me something you love about your brain. And then now let’s work with that. Now let’s, let’s help your time management, et cetera. So, celebrate their brain. That is something that I think that we all need, but particularly for students who are told their brain is part of their problem. Let’s celebrate it instead.

Reminds me of when my kids were, were growing up, you know, we would always have the IEP and would always be focused on the deficits of what they needed to work on. And so, to counter that, I would start the year by writing each of their teachers. And it was a letter of celebrating all of their strengths that they had because I wanted them to walk into the classroom and to see them as a positive who just needed a little bit of support. And, um, and so, so yeah, we’ve, we’ve always as a family focused on where, where are your superpowers and it’s, um, and a fast brain is a superpower because you can think really fast and react very quickly to, to put out whatever the problem is and the creative thinking that can come with an ADHD brain.

I love seeing that. So, great advice. Thank you for sharing all three of those with us. Now, um, before I get into what you’re doing, um, you mentioned the infographic that you have. So, tell us again what that is, and we’re going to put the link in the show notes, but if you want to tell what the link is, that’s, that’s fine as well.

Sure. You can go to my website, alteringcourse.com. And if you go to the freebies section, I’ve got an infographic called College Prep Essential Skills, and I break down into what I call the Four S’s of College Prep. And they’re the executive function skills that I think you really need to focus on in high school. You know, to help you transition into college. So grab that. Um, I’d love to hear what you think about it.

Thank you for sharing that with us. Cause I think, I think that that fits in really well with what we’re talking about, but I think a lot of parents will, will enjoy seeing that. Now tell us more about what you do, how we can get in touch with you.

Who, who you can work with, like, is it just locally or around the world where all of the details.

All right. So, alteringcourse.com, my website is the best place to go. You can find my socials there. I’m pretty active on Instagram. I have some other freebies that you can access, but I work with children and parents of all ages. Um, I say parents because I’ve had parents approach me after I’ve worked with their kids and say, well, can you help me with my time management? Can you? And the answer is yes. So, um, that is something that I like to do. My favorite way of working is to work with middle school or high school, um, students and their parents. So, sometimes for high school students, I prefer to work with them 1 on 1 or in a group setting with the students.

And then I work with the parents afterwards to kind of follow up on everything we talked about. Middle school and elementary families I like to work with parents and kids at the same time. And then college students, I’ll work with them on their own. And then if their parents would like to come in, that’s up to the student.

Um, but, and then again, I also work with adults, but I do have a group program that I really enjoy. And I think that is a great place to practice so many of these skills because it’s more of a social setting. And it’s something that they can see, oh, wait, someone else is struggling with the same thing I am.

And they’re here because they also want to improve because a lot of students can recognize, well, no one in my class is turning things in on time, but no one’s doing anything about it. So, like, let’s do something about it. So, I work virtually. Um, if you are in the Houston area, um, or. Kind of surrounding, then I can, I do in person workshops.

I also travel for workshops though, if you want to have me into your school or community group, but most of my one-to-one coaching and group coaching is virtual. So, I have students from all over and I taught in England for a long time. So, I love working with students from London as. Well, I taught in London. I love working with students from England, but from all over the world, really. So, there aren’t a lot of limits.

Sounds like it. And, and I like that because our audience is pretty widespread. So, anyone listening has an option of calling you and, and checking in with you. So, thank you for that. Well, Lauran, thank you for, for sharing this with me.

I’ve enjoyed the conversation. I always love talking about my kids, of course, you know, but, but also just learning more and you’re bringing more up to date information than, than what I’ve been able to share just because my experiences from when the kids were younger, so, um, so for bringing that in and just taking the time to share with us today.

Awesome. Thank you so much for having me, Tonya.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

3 Critical Steps in Financial Planning for Special Needs Kids!Show Notes:***********Wondering how your child with a disability will be financially secure? This interview reveals 3 life-changing steps!***********This interview dives into the world of financial planning for children with disabilities. Jim, a financial advisor, shares key strategies to secure their future. He emphasizes the importance of government benefits like SSI and SSDI, along with estate planning and Roth IRA conversions.

Throughout the conversation, Jim highlights a crucial mindset shift – it’s all about the child’s well-being, ensuring they have the resources for a fulfilling life. He warns against inaction, emphasizing that there are resources available to navigate this process.

The interview concludes with a discussion about Jim’s book and summit. While their contact information won’t be directly mentioned in the video, listeners who want to learn more can find them through these channels after reviewing the interview.

This video is a valuable resource for parents and caregivers of children with disabilities, offering practical steps and a reminder to prioritize their child’s future financial security.

Get Jim’s book for FREE! https://disabledchildplanning.com/

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

James Lange is a CPA/Attorney and the author of ten financial books that help IRA and retirement plan owners. The Wall Street Journal has endorsed Jim’s tax and estate planning strategies 36 times.

Jim’s daughter, Erica, has a disability. Jim’s Roth IRA conversion and SECURE Act expertise was critical in developing a solution for his daughter, and then extrapolating his solution for the benefit of all parents of a child with a disability. Jim authored a new book, Retire Secure for Parents of a Child with a Disability, with two experts in the disability field. The financial planning solutions Jim developed and is sharing with other parents of a child with a disability in this book came from his own family’s journey to devise a long-term financial security solution for Erica.

*Episode #*99: Secure Their Future: Financial Planning for Special Needs Kids*****Wondering how your child with a disability will be financially secure? This interview reveals 3 life-changing steps!***###### (Recorded May 22, 2024)

Full Transcript of Interview:

Tonya: Jim, welcome to Water Prairie.

Jim: Well, thank you so much for having me, Tonya.

You and I have talked a little bit via email and through, through some, some of your team about the topic that we’re going to talk about. And I’ve been looking forward to this one. My husband’s been excited about it as well. We’re looking forward to being able to share your information with, with our audience to start out. Let’s, let’s go back a little bit. I’d like to hear kind of what led you to looking for ways to help special needs parents provide for their children’s future.

Well, it’s interesting. You know, a lot of people become involved in situations related to some type of problem with their child. So my background is I’m a CPA and a state attorney. I’ve been doing this for 35 years. I have nine best-selling books. I’ve been in the Wall Street Journal 36 times. And my real area of expertise is I’m planning for people who have IRAs, Roth IRA conversions.

estate planning, the Secure Act, and then more recently, providing for a child with a disability, and when I had to come up with a solution for my own daughter, which my wife and I did, and the difference is The difference between her running out of money and having $1.9 million in today’s dollars. I wanted to just tell the world about it. I wanted to say, hey, hey, community of parents with a child with a disability. There is a way. That can enormously alleviate your worry and your anxiety because you’re not only going to have to provide or hopefully provide for your child during your lifetime, but then after you’re gone, you know, my daughter might survive me by 40 years.

How do we provide for her for 40 years after I’m gone and working longer, spending less and saving more just doesn’t do it. So I have this, what I think is wonderful information. I was able to. Recruit two wonderful coauthors and we wrote a book called Retire Secure for Parents with a Child with a Disability and and then we’re doing a summit on it and right now it’s my life goal to get this information out to as many people as possible.

As could use it as possible. We’re making the book available for free. We’re picking the summit available for free. And if people go to a website, you know, they can again, get this all for free. Uh, this is, this is me and my daughter and. My wife,

just a note, listeners, we’re going to talk more in detail about the book and about the summit, um, near the end. So stay with us to the end of this, but go ahead and look in the show notes in the description and you’ll see the links there as well. So make a note of that and remember to come back and click on those links.

And thank you for doing that, Tonya.

Oh, sure, sure. The, you know, our whole idea is we’re trying to serve as much, as many people as we can by providing as much information as we can.

And the majority of our listeners are parents with children with different disabilities and special needs. So this is valuable information for all of them to listen to. And, um, But I, I kind of want to get into what, so, so we know how you got started. This is a personal passion for you. Um, as it is for a lot of us, as, as you say, can you tell us what steps you followed to ensure that your daughter would be provided for?

Sure. So there’s three basic steps that I think apply to just about everybody who has a child with a disability, who wants to dramatically improve. The prospects for that child, both while you’re alive and after you’re gone. And let me start by saying, if you have a child with a disability and your goal is to provide for them for your lifetime and their lifetime, unless you’re spectacularly rich, You have a long, tough job ahead of you.

So you want to maximize every single thing that you can. You want to squeeze the last dollar out of the tax code. You want to get every government benefit that you can. Um, so just keep that in mind. And the difference, you know, a lot of times when I’m working with, you know, Let’s say a client that doesn’t have, that nobody in the family has a disability, and let’s say with superb planning, maybe we save, uh, an extra $500,000, and if we kind of screw it up, instead of getting an extra $500,000, the family gets nothing, or they even owe money.

And, Is that a terrible thing? Sure it is. Is it tragic if it’s done and two able-bodied adults don’t get as much as they could have? It’s bad, but it’s not tragic. But what if you have a child with a disability? And the difference between you doing it right and you doing it wrong is $500,000. And it’s not all that hard to find $500,000, depending on how much money you are, that is tragic because a little bit of money goes a long way, um, for a child with a disability, if you’re starting at zero. Now, there are many, many things are very expensive and we’re going to talk about government benefits, but we want to squeeze every single dollar, every single benefit that we can for the benefit of our child. And most of the work that I and the coauthors do is basically in one form or another, get money from whether it’s the Social Security Administration, whether it’s the, you know, the IRS or the federal government to, let’s say, transfer, usually gradually on a monthly basis or even annually, transfer money from the government resources to our child’s resources.

And that’s really the key. So there’s no magical investment. There’s no magical life insurance policy. Um, this is basically, let’s call it government program and tax reduction. I believe can make a huge difference for so many people. I’ll tell you the other immediate benefits of getting this work done after all three steps, and we’ve experienced it personally.

Cindy and I were really anxious. Oh my God, what are we going to do? Are kids going to run out of money? They’re going to be a ward of the state. They’re not going to be able to have any other resources. They’re not going to be able to have any luxuries. They’re not going to be able to see an out-of-town, out-of-network doctor.

They’re not going to be able to get the alternative drug that the, uh, that the, uh, insurance company isn’t covering, blah, blah, blah, blah, blah. And it weighed on us heavily. And then what happens afterwards? So this was. Anxiety for us. And then when I found out our daughter is very bright, she was very anxious about her own financial future.

And then when I, when I explained to her, you know, what we were doing and how we were, how she was going to be okay, the anxiety level for both us and her went way down and frankly, all of us have some physical issues, her more profound than, than ours, but anxiety exacerbates many of these symptoms. And for us, the reduction in anxiety did what you would expect, you know, better sleep, better feeling, blah, blah, blah. But for her, it made a dramatic difference in her health. So I think that that is achievable by getting these things done. So it’s, it’s not just a matter of, Oh, okay. 30 years after we’re gone, there’s going to be money instead of no money.

No, this is a, this is an immediate measurable benefit. Let’s do the three steps because they’re, they’re mission critical. And ideally, they’re done in this order, although you might be able to combine step two and three. Number one, mission critical. Can your child qualify for either SSI or SSDI? Now SSI is essentially a poverty program.

So your child can’t have money. And maybe that there’s some planning involved so that your plan, so that your child doesn’t have money when they make the application. And by the way, the Social Security Administration, they will take into consideration the parents resources. So if the parents have any type of estate or any type of income, there’s a very good chance you’re going to be over the limit and you’re not going to be able to qualify until that child turns 18.

So once the child turns 18, then the Social Security Administration looks at that child’s resources and not the parents, and that’s typically When, um, well, on behalf of the child, but the child, um, applies for SSI and without getting into the details, the other possibility is called SSDI, um, which is Social Security Disability Insurance, and that is, um, Um, it is preferable if you can qualify for that, but you need to have a work record.

Uh, either the child has to have a work record or the parents have to have a work record. And if we’re using the parent’s work record, the parents have to be of retirement age. So for example, our daughter is collecting SSDI because, um, my wife, um, then applied for Social Security for herself. And then.

SSDI based on my wife’s Earnings record, but, uh, and this isn’t my area of expertise. This is Debra McFadden’s area of expertise and she calls getting qualified for SSI or SSDI the golden ticket. Uh, and if you like, I’ll tell you some of the benefits. Of the golden ticket.

Sure. Sure. Cause I know a lot of our parents that are listening will end up filing.

First, first there’s a monthly benefit and I should know exactly how much it is. And I think it varies depending on number of things, but let’s just call it roughly. 800, 900 a month, and I would say that’s just the beginning of the benefits. The other benefit is if you qualify for SSI or SSDI, you’re going to automatically qualify for other benefits.

Um, it might be insurance. It might be, um, Medicare. Which is, our daughter is qualifying under state insurance and Medicare, which is huge, more than the 900 a month cash. Um, it could potentially qualify you for equipment, uh, for specialized computers, specialized walking aids, specialized wheelchairs, um, all types of things that frankly can be very expensive and getting this qualification is mission critical for people who will, uh, who do qualify. And, you know, there’s a whole art and there’s a whole strategy of getting, uh, children qualified. Now, sometimes, uh, the, the disability is not so severe. Uh, that the government will say, yes, you qualify.

Uh, in fact, the vast majority of the applications, uh, probably many of whom deserve to be qualified are routinely rejected. And um, so to oversimplify and Debbie would hate if she heard me say this, if your child can work, there’s a good chance that are not going to be able to qualify if they can’t work.

Then there’s a good chance that they will. Um, and I’m sure that she would not like that characterization, but I guess my point, I mean, we’ve had, we’ve had adult children with down syndrome that bag groceries at the grocery store, not qualify because they can work, but that’s maybe an extreme rejection.

It’s the government doesn’t hand over money easily. Um, which is one of the reasons why if you are going for this designation, you really want to get this application. Dot your I’s, cross your T’s. There’s a whole bunch of strategies. I’ll give you a couple of them and then I’ll refer you to the book. So we as parents, we naturally want to tell people what our child can do.

In fact, very frankly, before this call, you were starting to tell me about your child and your children and you were, you, you didn’t say, well, they can’t do this. They can’t do that. You said they can do this and they can do that. And that’s natural. That’s what we, as parents want to do. But when you’re qualifying for SSI and SSDI, we want to go a hundred percent in the opposite direction.

We want to make our kids look as bad as possible. Um, we want to just make it so that boy, they can, you know, they’re, they, they have a really, really tough time just doing the most basic things like getting dressed or doing anything. So here’s the example that, that Debbie McFadden. Yeah, so Debbie is the parent of two Paralympic champions, uh, Tatiana, who is a racer, wheelchair racer, and, um, uh, Hannah, who is a, an above-the-knee amputee.

And she is a world-class Paralympic rock climber. All right. So this, this woman is an athlete. Okay. You have to be really good to be in that rig. And there’s very little doubt in my mind that if you timed her going up a flight of steps and you time me or you, or even most people that she’s going to get up there faster on one leg.

Okay. But. When it came time to apply for benefits, did Debbie tell the people, Oh, by the way, my daughter, she’s like an Olympic champion. She can get up steps really quickly, faster than you or I could. No. She said, my daughter can’t go up steps the way other people can go up steps. She only has one leg that is functional.

Okay, so this is tough. This is tough. That’s not what a parent wants to say, but that’s one of the strategies, and there’s a lot of other strategies. You want it, and you want to have to paint this picture. Hey, this kid has problems. He or she will likely never be able to work, and, um, You know, there’s, there’s discussions in the book about, you know, letters from doctors again, and you can’t just say, ask the doctor, Hey, can you write this letter?

You have to tell the doctor more or less what needs to be in the letter and caregivers and teachers, and it’s, it’s a big deal, but over time, it can be worth hundreds of thousands of dollars, maybe a million dollars. To the child over their lifetime. So you really want to get this right. So I’m going to and if you have any questions on it, that’s great.

But I’ll just sum up and say step one is get your kid qualified for SSI or SSDI. And more information is available in the book. More information will be available at our free virtual summit.

Excellent. That’s, that’s very powerful. Just that information alone. And we’ve talked about some of this in past episodes, um, and especially the part about making sure that your child’s income level is low enough by the time they turn 18. Um, parents listening. This is also including, and correct me if I’m wrong, if you have a 529 plan for your child.

Interestingly, you brought up 529 plans. I was gonna talk about that later. Actually, I wasn’t gonna talk about 529 plans. I was gonna talk about something called the ABLE Plan.

I was gonna ask, I was gonna bring that up as well ’cause we, we did an episode on that .

And, and, and frankly, if, if your audience is familiar with a 529 plan. where you essentially make an after-tax contribution to a fund that grows income tax-free, assuming that at some point the appropriate beneficiary, usually your kid but not necessarily, takes that money out for qualifying educational uses, that the money and the growth comes out tax-free.

And sometimes what happens is people put money in a 529 plan before they realize the extent of their child’s disability. Maybe the child will never go to college. The money’s there. There is actually a mechanism of transferring money from that 529 to an ABLE account. ABLE is wonderful. It’s just kind of like a 529 plan, right?

Every new thing tastes like chicken, right? It’s, it’s very much like a 529 plan. You put after-tax dollars in, the money grows tax-free. When the money comes out where the child is using that money for a qualifying use, not only does the money come out tax-free, but the growth comes out tax-free. And the other wonderful thing about the ABLE Act is it can be used for some things that a typical special needs trust, and we’ll get into that later, cannot be used for.

So it is a good way to supplement. The child’s income and still maintain government benefits. So it’s a great thing.

So, but the dollar amounts are still limited on that, correct?

That’s, that’s the problem that it is not, it’s not a game changer. It’s a good thing. But it’s not the difference between your kid running out of money and your kid being fine.

It’s just one more arrow in your quiver or mixing that up. But anyway, it’s, it’s just one one strategy that isn’t mission critical. We’ll get to the ones that are, but it’s a good thing. And why not?

Right. And like I said, we’ve, we’ve mentioned these before. We haven’t gone into deep dives on them, but we have tried to at least help provide that as a resource of information for our parents that are listening, especially when their children are young.

Because, as you say, a lot of times you don’t know, my children were both at birth, given money to go into their college accounts. So before they were walking this earth, they, they had money in their account and that money was to grow to get them ready for college. But, you know, as we talked to other parents, if the children are not going to go to college one day, they may need to think differently as far as when they start using those funds.

And maybe they do go to college, but they want money for others and they get a scholarship and maybe they want money for other things. Should I go on to step two?

Yeah, let’s, let’s go ahead. Cause I want to kind of run through all three of these before we go into the other questions that I have.

All right. So step two, uh, easier said than done is get your state planning right. This is, this is also mission-critical. So I would tell any couple with a child, you should get your wills done. And let’s, let’s forget about the money for the moment. All right. If something should happen to you and your spouse or the co-parent of your child.

Who’s going to raise that child? Well, I want the person to raise that child to be the person that you want to raise the child. Not the person that some judge in his or her estimation should be the person who raises the child. Maybe it’s your mother. Maybe it’s your brother. Maybe it’s a friend. Maybe it is a community that you’re involved with.

I don’t know. But here’s what I would think. You’re better off making that choice and doing it now. And by the way, if, if you know, so I was talking to somebody yesterday and she has a 75 year old mom and she says, you know, boy, my son is young. I, you know, my mom, isn’t going to survive to take care of him long enough.

Wait, Grandma lives with the son. She knows the son’s issues better than anybody. Name her, and then maybe come up with a successor, or even have her come up with a successor. Don’t let that be an excuse to put this off. You want to get your wills and your trust done right. So I just told you some of the non-financial part, as well as power of attorney and healthcare power of attorney, which is also mission critical.

Now let’s go to the money. Money. Let’s assume for discussion’s sake that your child, um, either now or even potentially later on qualifies for SSI or SSDI. In that case, and particularly with SSI, you lose your qualification for SSI if you have money. Well, gee, Jim, why don’t we just leave the money to our kid in a trust?

Okay, so let’s say that you do a standard minor’s trust or even a trust that will last the life of the child. And let’s say it’s a more or less, let’s call it a standard creditor’s trust. The IRS will look right through that trust. They will treat that money as if it’s the kid’s. They will cut off the kid’s benefit and maybe even try to get some money out of that trust for money that they have already paid.

So that would be a total disaster. So even if you have wills and have a standard trust, boom, you can lose that money and even have to pay money back. And that would be a horrendous thing. Remember, we’re trying to provide for this child for the rest of their life. No, you want something that is called a special needs trust.

And I won’t go into all the nitty gritty on that, but basically the trust is designed in a way that the social security administration and the IRS cannot go through that trust and treat it as if it is the kid’s money. So that money is protected for the benefit of the child. Now there are a bunch of restrictions on that, on the, you, what you’re allowed to do with that money, and I’ll be more specific, what the trustee is allowed to use that money for, for the benefit.

of the child. But the key is, is you want to get that trust. You want to get it right. If the underlying asset is an IRA or a 401k, there’s four additional things that you have to worry about. But if you do this all right, then you’re going to have a trust that can, you can leave an IRA to, you can leave a Roth IRA to, you can leave after-tax dollars to, you can leave your house to, and if, if the, T’s are crossed and the I’s are dotted and the child still maintains their SSI or SSDI status at your death.

That trust will be in place and the benefits will be protected. All right, so that, that is mission critical. Now I’m going to go to the advanced portion. All right, a lot of people, including us at one time, don’t really know how their kid is going to do Many years from now. So let’s say you’re in your forties or fifties or sixties, even, even seventies, you have an adult child and you hope that he’s going to be here.

She’s going to be able to get a job and be okay. You hope the best for your child, but you fear the worst. Well, and you, and you certainly don’t feel good about leaving the money outright to the child. So you have two choices. One, you can do, let’s call it the standard, uh, Predator protection trust. That the, that the trustee can use for the child with relatively liberal terms.

It protects them from, from the child himself from doing something stupid. It protects if the child ever gets married and the future ex sues them. It protects against other creditors, um, or maybe a hospital stay where it turns out there’s a $300,000 balance and well, gee, you know, I’m sorry. My money’s in a trust. So. It does. It does that.

All right. But the standard trust doesn’t protect government benefits. So, okay, well, we’ll do a government benefit, you know, type trust the special needs trust. Well, that’s going to be, let’s say that your child ends up not needing SSI not qualifying. And now we have this money in a very restrictive trust.

That isn’t the ideal place for the money. Okay. So, and, and let’s just say at the time of drafting, we’re not sure if our child is going to qualify for SSI or SSDI or whether they’re not. So here’s the advanced idea for this. It’s called a toggle trust, and it doesn’t work this way mechanically, but let’s just talk about it conceptually.

Think of two different trusts. One is, let’s call it the standard creditor’s protection trust that is pretty favorable for the child If they’re not getting a government benefit, the other one is, let’s call it this special needs trust, um, which is less favorable if the child doesn’t need or isn’t getting the benefit, but it’s very favorable if the child does need to benefit because it will protect the money in the trust and you basically let the trustee toggle Well, I need a creditor’s protection trust and you don’t make that decision now, but you make it after your, and maybe your spouse’s death.

And that way the trustee is going to know more than you do now. Cause right now, maybe your kids on SSI or SSDI, maybe they will fall off it. Maybe they’re not on it, but later they will qualify. So this just adds flexibility to the estate plan, and I am a big fan of adding flexibility to the estate plan.

I should tell you this is not a solicitation for legal services. I don’t have a law firm anymore. I sold it. But I still have this information, and I think it’s great information. I wanted to share it with your listeners. All right. So that’s, that’s the second thing is you want to get the estate plan right, the guardianship provisions, the powers of attorney, and the, let’s say, potentially the toggle, or if it’s clear, you know, a special needs or a protective trust.

So before we go on, I have a question about the toggle trust. So the trustee is the one that is. is deciding which way that’s going as, as time’s passing.

That’s correct. Which is typically, typically that decision will be made relatively shortly after the parent’s death.

Okay. So, so it’s, it’s happened at the point that it’s being implemented. It’s not five years from now they’re going to switch it the other way. They just have the decision at that time. It’s either going to go towards standard or special needs. Okay. Okay.

And, and I, again, I think that this is, I think it’s mission-critical to get this right.

Yeah. I had not heard of that before. So that’s, that’s an interesting…

Problem is hardly anybody’s heard of this before, including the estate attorneys.

So, listeners, now you know what to ask.

I’m creating a headache for you guys because some very good estate attorneys that work in this area have never heard of a title trust.

At least now our listeners know to ask for this.

Yeah, and then, and then I don’t know what to do, you know, when, when the attorney says, what? What’s a toggle trust? Um, but here, here’s what I would say. So, so I, I, I was a practicing estate attorney for 35 years. And I have my own ideas on what I think is the best estate plan. The other thing that I’ll tell you is when I review these plans, which is part of our work, when we do a master plan, I’m, I’m happy with maybe one out of 10 of the set of documents I see.

I almost always see major changes that I want to implement. All right. So that is what’s a, one of the problems. Uh, the other problem is, If somebody came to me and they said, well, I talked to Joe Schmo or I read this book and I’m interested in this provision in my will or in my trust, I tried to keep an open mind.

Hey, maybe I’ll learn something nine times out of 10 I liked my way of doing it better. Your state attorney might say, Hey, no, let’s just pick one or the other. And if we pick wrong, Okay. You know, we’ll just change it before you die. You’ll have to come in again. So, you know, and I don’t know, maybe somebody has a better argument against it than I do.

Um, but anyway, I will tell you that that’s going to be a practical problem. But what I would prefer is the attorney says, Oh, this sounds like an interesting idea. Maybe I can read up on it. And since I probably want you to go to a specialist anyway. Since I’m likely to see many more of these types of special needs or traditional with the toggle possibility, I want to get this thing right.

So then when the next person comes in, I can, you know, I can help that person. So I’m kind of getting, that’s kind of the advanced portion, but even just getting the basics right is absolutely mission critical.

Well, I can, I think I can speak for most of our listeners, especially as parents have had to learn how to advocate for their children.

So we’re giving them an assignment now to advocate for themselves whenever they go in. They know how to ask questions. They know how to try to help research. So I think we’re giving them some tools now that they can. Can take whenever they do have these, these meetings.

Well, I think that that’s what you, you and I are about Tonya. We are trying to give tools to a population that needs them more than most any other population.

Well, this is why I was so excited about this, this conversation, because I knew we’re going to be getting some.

It’s not all that hard to save a couple hundred thousand dollars. Uh, no, we haven’t got into my real area of expertise cause the first two are not. Should we go to the third part?

Yeah, let’s, let’s go into the third one. I want to, I want to hear this one now.

All right. So this is, this is really my area of expertise. So for the last, I did the first article. Peer review article. Um, and I wrote it 1997 even before Roth IRA conversions came into law in 1998.

And when they, even before it became law, I realized, wow, this thing is going to be unbelievable tax free growth for the rest of your life, the rest of your kid’s life, the rest of your grandkid’s life. And you know, when we’re number crunchers, so we said, okay, here’s if you don’t do any conversion. And your kid is going to be here.

Here’s if you convert this much for so many years, and I’m showing the end result. And here’s going to be where your kid is if you do the highest conversion. So we would run numbers. And determine, you know, using relatively conservative assumptions, where your kid will be, you know, not five years, 10 years, which is, let’s say, a relatively normal outlook, but 30 years, 40 years, even well after you’re gone.

So, in our daughter’s example, getting her qualified for SSI, forget about government benefits. All right. And getting the estate planning, right. She’s going to be better off by $1.9 million in today’s dollars because we proactively took these three steps. You know, that is, we got her qualified for SSDI, or we can SSI is similar for estate planning.

We got the estate plan right, and we got the Roth IRA conversions right, which started way back in 1998. And then I’ve done strategic Roth, 401k contributions, additional conversions, but we got the Roth right. And at the risk of being a little technical, back before 2020, if you died with an IRA or Roth IRA, and you left it to a non-spouse beneficiary, that non spouse beneficiary could stretch or defer.

Those distributions that many of us who are older than I’m not older than 73, um, yet, um, but you, those of us, those of you who are, you have a minimum required distribution, just like your kid will have a minimum required distribution after you’re gone. Well, in the old days, pre-2020, your kid got to stretch or defer those distributions of either an inherited Roth or an inherited traditional IRA over their life.

Then in 2020, government said, no, we’re sorry. We know that we said you could have the beneficiaries, beneficiaries stretched over their life, but we’re too greedy. We want the tax sooner. So now we’re only going to give your kid 10 years. And by the way. Even on a million-dollar bequest, that’s, that’s all.

If you count the interest over many years, that’s like a million-dollar difference. But guess what? They made an exception. If you’re an eligible designated beneficiary, which to oversimplify, means if you either qualify for SSI or SSDI and you maintain that qualification, the government is going to allow you, as you the beneficiary or the trust as the beneficiary for the benefit of the child, to stretch or defer those distributions over their entire life.

So. The, the difference in is very odd, even if you only have a $500,000 IRA, let’s say you have that a little bit more and not a heck of a lot else, your kid can be better off by $239,000 if you get the planning for the Roth IRA right. And by the way, you’re going to be better off too. So this isn’t, you know, this isn’t one of those where, you know, you, you eat rice and beans so your kid can be rich.

No, this is. This is not at your expense. In fact, towards the end of your life, you’ll actually have more money and more purchasing power if you get the Roth right, but, and a lot of people certainly have heard of Roth IRAs. And there’s a lot of advisors that Roth IRA analysis is part of what they do. And all the literature, at least that I’ve looked at, I don’t see the combination and the synergy of Roth IRA conversions and planning for a child with a disability. Now, are there a lot of other things that are related, like after tax dollars in a Roth, uh, converting, uh, uh, an inherited 401k to a Roth after death, um, separating the coffee from the cream, which in effect is to some extent a free Roth IRA conversion for your after-tax dollars, um, and then there’s a whole bunch of other, related strategies.

I’m just trying to give the big picture, but I’ll just say that there is often hundreds of thousands of dollars of getting this right. And even though the other two are absolutely mission-critical, and if you could only do two and only three, not three, then I would say, cut me and my Roth out, get the SSI and SSDI and the estate planning in. But anyway, mission-critical. Number one, SSI, SSDI. Number two, the estate planning right with the wills and the trusts and the beneficiary designation of the retirement plan and the special needs trust.

And number three is the tax planning right with Roth IRAs, ABLE, and then let’s say some of the subtle nuances in the tax law that frankly, I’ve been doing much of this for the last 25 years, that’s how long Roth conversions have been around. Huge opportunity. When I meet new, new people, new prospects, I hardly see anybody in the disability community who has got the Roth right.

And so I want to clarify, um, what you’re saying here to make sure, because if I’m following it, then our listeners are following it. And if I’m lost, our listeners may still be following it, but, but, but we’ll see here.

This isn’t easy stuff. It really isn’t.

My parents age, I know they’ve kind of had to make that payout time when things changed. So that was in 2020 that that changed.

Uh, that’s correct.

The required distribution started at that point, right?

In 2020, the big change was the rules for the beneficiary. So let’s say for discussion’s sake that your parent died on December 31, 2019 and left you the beneficiary of a million dollar IRA.

All right, you would be able to stretch that million-dollar IRA over your entire life. Let’s say your parents died on January 1, 2020. You would have to take all that IRA. Remember, nobody’s paid tax on it. So you’re gonna have to take that whole million dollars. You’re gonna have to come up with income tax payment on that million dollars of taxable income.

Okay. So this was an absolutely miserable, miserable, miserable rule, but thank goodness they put in the exception of the one surviving spouse and two people who qualify, well, they use the word eligible designated beneficiary. And then there was also a recent ruling that the IRS would take.

The designation that the Social Security Administration gives you, where before you had to prove it separately, but now if you qualify for SSI or SSDI, then the IRS will honor that, um, designation and let you stretch that inherited IRA over their lifetime. Right.

So today that’s still the case.

Yes. Ten years for everybody else. Uh, over the lifetime for a child with a disability.

All right. So they, so, so they do need to have that SSI, SSDI in place as soon as possible.

Yes.

If they are going to be a beneficiary of…

And I will tell you, it is a bear to do, that is a lot of detail work. I’m not asking you to do anything that’s easy, but I’ll also tell you this, the odds of that getting done right, if it’s not you.are not great, or at least go down dramatically. Uh, frankly, I could never have done what my wife did. You know, she had so much patience. She dealt with so many doctors and school teachers and other people that Erica had contact with. And it was one heck of a job. Um, and nobody’s going to do that better for you than you.

And to think that you’re going to try to get that done after you die, that somebody else is going to do that, uh, not likely.

Wow. So this is great information. So I do have some other questions as we’re moving forward here.

Okay. Could I just pick up on one point that you brought up? There’s some very cool planning that grandparents can do.

All right. So, Tonya, if you were, if you’re, if your child did qualify for SSI and SSDI, let’s do the simple case. There’s some very cool planning that your parents can do in their will, in their trust, Um, that should not be ignored. And we can also use a concept called disclaimer where you’re let’s just keep it simple and say you’re the only child they leave everything to you.

They give you the right to either keep it or disclaim it. But if you disclaim it, it could go either into a creditor protection trust, the special needs trust or even the toggle. So there’s things that grandparents can do too.

Okay. So can they, can they leave it in a toggle trust for the child?

Yes, they can. The thing is most, even if they’re a grandparent, even if their grandchild has a disability, most grandparents are still going to want to take care of their kid first. Now, maybe you’re so stinking rich from the royalties from this, um, this, uh, podcast that you don’t need any money because I know you make a lot of money on this stuff.

Tons. We, we almost cover a portion of one of our recording sessions.

You almost cover, by the way, I have found that very typical and I love, I love being part of this community because We, I have found this community to be so given and so open and everybody’s trying to help everybody and we’re kind of like we’re, we’re all in this together.

And I felt that in different groups in the past and it’s just, it’s just a wonderful feeling, but anyway, notwithstanding your parents would probably rather give it to you and then let you worry about it. But let’s just say for discussion sake that there, I’m just going to make up a number there. Let’s assume that, uh, your kids qualify for SSI.

All right. They leave you a million dollars in an IRA. You’re going to have to take it out and pay taxes on it at your very high rate because of all the royalties you earned in 10 years. Let’s say that you had sufficient money that you didn’t need it. You could disclaim it. And then, if, if it works the way I want, then it goes into a trust where your kids, unlike you, can stretch that inherited IRA over their lifetime. So, meaning it’s, if we look at you and your kids as one economic unit, there’s a lot of tax savings to be made. By having the money go to the kids instead of you.

All right. So I want to just, just repeat this, this last little, little bit that we talked about. So, because some of our parents may be in the situation where their parents or the grandparent of the child is leaving or they’re, they’re putting the parents line in as the beneficiary.

So if nothing else changes, that parent has 10 years and they have to pay the tax upfront on that whenever, whenever they, they take it out, however, they can disclaim it and pass that on to their child. And if the child is already set up with the SSI SSDI, then they have their lifetime to use those funds as needed.

And if the beneficiary that let’s, let’s go back to your family, your mom and dad are preparing their will. Let’s keep it simple. Let’s forget about siblings. They’re going to start by leaving everything to you, not in trust. Cause you’re a big girl and they, they know that you’re mature and responsible and everything else.

All right. They leave it to you, but in, but in, in their documents. Both in their will, their trust, the beneficiary designation of their IRA. I wanna have something in there that says, I give Tony the right to disclaim any share. And by the way, you can disclaim the IRA, part of the IRA, the house, whatever they’re gonna leave you, you, they give you the right to disclaim.

And what you just, you can’t say, I disclaim. It goes here, I disclaim, it goes there. All you can do is say, I disclaim and it goes next in line. Who’s next in line? Oh, the special needs trust for my child that’s already drafted. Maybe even with the toggle. And by the way, what I would do is don’t necessarily take my word for it. That’s one of the reasons why we wrote this 450 page book. Um, it’s one of the reasons why we’re having this, this summit. Uh, you can read about it and see if you like the idea.

Right. And, and, and listeners make sure that, that you click on that link and see, see, see what’s happening with the summit. If you’re listening to this later and the summit is over, the, the book is there. A lot of that information will be there as well.

So I’m not going to have this wonderful summit that’s gonna have me, it’s gonna have Debbie McFadden, the SSI and SSDI person. It’s gonna have, uh, joy Steiner, the, you know, the wonderful estate attorney who writes. beautifully. She speaks beautifully. We’re not gonna have all this and then say, Oh, too bad you missed it.

You’re gonna have to wait a couple months before you get any benefit. No, no, we’re I don’t think we’re gonna have the whole thing up at once, but we’re gonna have some resources because what we find is that some people Learn best by reading. Some people learn best by viewing and most people learn even better by doing both. So we’re going to try to make that available.

Great. So, so listening, if you’re listening six months from now, click on the link and see what he, by then he may have all of it up anyway.

If people have a specific issue, the best source of information, particularly for readers is the book. Look at that table of contents.

Read about what you’re interested in. You know, then after the first thing, then you can go to other things, but that’s the key. That table of contents. It’s very, very specific. There’s a very good chance that there’s one or two issues that you have thought about that you’re looking for additional guidance on that will that will be in the book.

And then. Maybe after you do that and you get some confidence. Hey, this was some great information. You know, I didn’t know this. I didn’t know that. Then you can, you know, start looking more at the table of contents. Well, gee, what is the best estate plan? How does this special needs trust work? What’s a toggle?

Can I have some information on the toggle, et cetera, et cetera.

Before, before we finish here, um, I have some open-ended statements that I’d like to ask you so we can pass on some advice this way, and then I’m going to have you, um, give us just one, one more blurb about the, the summit too, before, before we close.

Okay, sure.

So listeners, if you’ve been following this season, you know, we’ve been doing some, um, different advice by starting a statement and then my guest is finishing it. So Jim has agreed to play along this episode. So the first one that I have for you, Jim, is the biggest fear I had about my child’s financial future was…

The biggest fear that I had about my child’s financial future is how’s my child going to have enough money to to comfortably live after my wife and I are gone.

Okay, so next statement. I wish every parent of a special needs child knew that…

I wish every child, every parent of a child with a, with special needs knew about, if they don’t already, qualifying for SSI and SSDI, and if their child has any type of reasonable chance to do everything in their power to make sure that that child qualifies. I want that child qualified for SSI and SSDI, typically after the child turns 18.

All right, last one, for parents feeling overwhelmed by financial planning, I would recommend…

For parents who are feeling overwhelmed, take some time. And I know that you’re busy. I know that you’re overwhelmed. I know that this is difficult. Take some time. Go through the process. Finish the process. Get it done. Then go think about something else. Don’t, don’t just, if you do nothing, you’re going to be in the same position two years from now.

You’re going to have the same anxiety, but you’ll have had two additional years of anxiety that could have, to a large extent, been alleviated had you done this. And believe me, I get it. You know, just the day-to-day, and particularly if your child is living with you, is just so difficult. It’s emotionally wrenching, uh, for many.

It’s physically demanding, um, you know, a lot of times, you know, our, our kids are not perfect patients, and they do things that test our patience. But you want to get this planning done. You want to make sure that you’re qualified for SSI/SSDI. You want to get that estate planning done and you want to get the Roth and all the financial part optimized because it’s going to make a big difference.

You’re going to feel a lot better. And are you going to do it all tomorrow? No, but not two years from now. You know, think about three to six months. You’re going to try to at least get this started. Um, and again, whether you use yourself, CPAs, estate attorneys, financial advisors, uh, people even in the community that offer this service. Um, you want to get this done. You’ll feel better. I promise you.

The summit and the book are at DisabledChildPlanning.com.

In fact, if you, if you sign up for the summit, you automatically get the book. If you’re seeing this after the summit, that is after June 18th, I’m not sure what will be up there, but presumably we’ll still have generous offers. I know everybody’s arguing with me that I shouldn’t give the book away for free, partly because people won’t think it’s that good. Well, I, the re, the other authors, a whole bunch of the reviewers, including Burton Malkiel, uh, they, they think it’s the best book there is on the subject.

So, you want to get the book, uh, DisabledChildPlanning.com/freestuff. If it’s before June 18th, you want to sign up for the summit. The summit, we’re going to have the three authors, uh, we’re going to have a whole bunch of other speakers.

Well, Jim, I appreciate you spending some time with me today, going through so much information here.

I, I’ve learned a lot. A lot of this I knew, but I’ve learned even more. So I’m hoping that our listeners are staying with us. They can go back and listen to this repeatedly and, and get all of their notes together from the first part. And I’m hoping that you’ll see a lot of them at the summit too.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

An Occupational Therapist Discusses Reasons Why Your Child Hates WritingShow Notes:*********It might not be about the writing at all! Discover the hidden reason behind why your child hates writing.***********Would you say your child hates writing? They’re not alone! Many children struggle with writing, and it can be frustrating for both them and their parents. This interview offers a fresh perspective, focusing on the underlying reasons behind a child’s writing woes and how to address them.

Forget forcing endless writing drills. Instead, the key is to develop the foundational skills that make writing easier. These skills include sensory processing and gross motor skills. Think jumping on a trampoline, building an obstacle course, or even playing with Play-Doh – all these activities can help your child develop the physical control and sensory awareness needed for writing success.

The interview also explores alternative writing methods for children who dislike traditional pen-and-paper tasks. Dictation software, standing desks, and even exercise balls can all be helpful tools.

If you suspect sensory processing issues are contributing to your child’s writing struggles, occupational therapists can offer valuable support. There are also online resources available to help you learn more about sensory processing and how it impacts writing.

Here’s what you can take away:

Ditch the drills: Focus on building the underlying skills that make writing easier.
Move it or lose it: Activities that develop sensory processing and gross motor skills are key.
Think outside the box: Explore alternative writing methods like dictation or standing desks.
Seek help: Occupational therapists can provide valuable support for children with sensory processing issues.
Be an advocate: Learn about sensory processing and explain it to others who work with your child.

By understanding the reasons behind your child’s writing struggles and focusing on building the necessary skills, you can help them develop a more positive relationship with writing.

Connect with Munira:

https://ot4kids.thinkific.com/
https://www.facebook.com/groups/helpingkidswrite

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Munira Adenwalla is a Paediatric Occupational Therapist of 25+ years and a home educating mum to a 12 year old. She specializes in sensory processing and thinking outside the box to support parents and their neurodivergent kids to move, learn, and play through fun.

Munira is a strong advocate that parents know their child best. She created the Foundations for Writing program, which uses the No Writing Way(TM) to help writing.

Munira also loves travel, food, and cat sitting with her son.

*Episode #98: Why Your Child Hates Writing (and How to Help Them Love It!)***It might not be about the writing at all! Discover the hidden reason behind why your child hates writing.***###### (Recorded April 10, 2024)*

Full Transcript of Interview:

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

****Single Mom of a Special Needs Child****Show Notes:*********Forget “toughen up” – This mom reveals the secret weapon for raising a child with special needs (and it’s not what you think.)***********Danielle, a single mom of a special needs child, shares her experiences raising her daughter with epilepsy and auditory processing difficulties. The interview highlights the challenges Danielle faces navigating the healthcare system, advocating for her daughter’s needs at school, and managing the emotional toll.

Danielle describes struggling to find qualified doctors who listen to her concerns and frustration with insurance limitations. She emphasizes the importance of advocating for your child and highlights the need for parents to be their child’s strongest voice.

Despite the challenges, Danielle finds strength through self-care. This includes small breaks like watching a movie or taking an extra hour at the store without her daughter. She also emphasizes the importance of finding a support system, whether through online communities or support groups.

Danielle has transitioned into a career as a life coach, focusing on women facing infertility, miscarriage, and single moms by choice. She offers coaching services to help parents navigate the challenges of raising a child with special needs, including advocating for their child and dealing with guilt.

The interview concludes with Danielle encouraging parents to trust their instincts and fight for their child’s needs. She reminds them they’re not alone and there are resources available to help them on this journey.

Connect with Danielle:

Email: fslcpodcast[@]gmail.com

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Danielle is a certified life coach that wear many hats. She enjoys helping those in need as they navigate difficult seasons in life as she brings a nurturing and understanding approach to a variety of situations. She utilizes wealth of knowledge and experience empower clients to navigate the emotional, mental, and physical complexities that they face. When she is not helping people on their journey of healing she is going on adventures with her 6-year-old daughter that has special needs.

Episode #97: Overcoming Guilt as a Single Mom of a Special Needs Child***Forget “toughen up” – This mom reveals the secret weapon for raising a child with special needs (and it’s not what you think.)***###### (Recorded April 8, 2024)

Full Transcript of Interview:

Danielle: Yeah, that that’s my hope for so many families that they just have Children that will outgrow it. I’ve been told by one because we’ve had multiple pediatric neurologists, you know, one said oh, she might outgrow it. And then the next one said, no, she’s not going to outgrow this. This is for the rest of her life.

And I’m just like, it’s not what I want to hear. It’s conflicting. And then the other one is just like, oh just stay on this medicine and wait two years and then come back and see me. So, you know, what do you do?

Tonya: So, So wait two years? So there’s no checkups during that time or changes?

No, I’ve had to fight. We moved to another state and just trying to find a pediatric neurologist, which was a journey in itself, end up finding one and very thorough.

We had two hour-long appointments. And, you know, I told him, I’m like, okay, my daughter has this and he’s like, oh, no, that’s not this. And he was just very kind of condescending because I asked him a question. He’s like, oh, is that what you wanted to hear? And I’m like, well as a doctor. That’s not what you say to a parent that is just trying to figure out what to do next.

You know, I’m like, you don’t say, is that what you wanted to hear? It’s kind of, you know, it’s, it’s. It’s upsetting, but at least he was thorough and left very thorough notes. So, you know, end up getting somewhere, my daughter being on the medication and then he ended up retiring and then not really taking my calls.

As my daughter had a medical emergency recently and we were in the emergency room and I’m like, this is kind of life threatening. It’s, you know, safety or risk concerns. And his office wouldn’t call me back. So then end up finding a new pediatric neurologist, but in this I have to call their office six to eight times just to get through.

So like when you schedule an appointment, it just sends you to a voicemail and no one calls back. And so I’m just at this kind of point of frustration. We don’t have a, I don’t have a lot of options, you know, my area, there’s really no pediatric neurologist. So the new person is good. And, you know, determining that the medicine my daughter was on for a couple of months, she was having adverse effects.

They’re causing hallucinations and, you know, and in that. Do the hallucinations not only now have a pediatric neurology, a pediatric neurologist, a child psychiatrist that wanted to put her on antipsychotics. And I’m like, she’s six years old. I’m not putting my six year old on antipsychotics and yet still trying to figure out what’s reality and what’s not reality, you know, and trying to tell her, okay, when you hear this, when you see this, this isn’t real.

And this is what we can do trying to figure out how to tell the school. Because if you say, Hey, my daughter sees this. Um, they kind of look at you, of course, but having to figure that out. And then her being six and just trying to make sense of it. And of course it’s scary for her. It’s scary for me because when it happened, it was like midnight when we had her first episode and rushed her to the emergency room and they said, we don’t really know what to do.

And then they’re like, Oh, we’ll just Google, um, you know, the specialist. And I’m like, that doesn’t help me at three in the morning. And so I’m just trying to figure out what do I want to do moving forward in the midst of all of it? So that’s me in a nutshell.

A lot of our families that are listening are facing that same, that same series of questions.

You know, you, you’re starting out trying to find who is the doctor. And in your case, you’ve had to, to find multiple doctors. Unfortunately, that’s that. And that’s such a specialty area. There aren’t going to be a lot of choices in each, each region as well. But then even when you find the doctor, what questions do you need to be asking?

You know, the, the medicine is one question, but then the side effects from the medicine, and I’m with you adding more medicine to medicine because of the medicine for a six year old, especially that’s just, that’s a lot. Are there dietary changes that could be there that, that might do what the medicine’s doing?

I don’t, I don’t know these answers. I’m not, those that are listening. I’m not telling you what to do. This is just, I’m just asking questions because these are what the questions are that we keep asking and having to find out, you know, how can we go? Um, I would say if you’re listening and you’re a parent of an older child and you have any advice for us, leave it in the comments, send us an email.

We will pass this on for others to be able to see as well. The stage that you’re in, you’re, you’re still seeking. But we have parents that are going to be younger than you that will be able to benefit from this conversation too, to know that, all right, so if I have to change doctors, it’s okay. That’s something I didn’t know.

I don’t know about you, but I thought that, you know, you have a doctor, you have to stay with that doctor. I had to learn that it was okay to question them and to, I guess you call it fire them and go on to another doctor. If you’re not, if you’re not connecting right, or if you don’t feel like it’s the right care for your child.

Exactly. And as you mentioned to having to sometimes pay out of pocket. So my daughter has insurance, but the insurance has been really difficult. They’re referring her to. For when they’re referring her to like specialists that don’t see children. So it doesn’t help me when you give me a referral and this is my third time and you’re not, not helping me, you know?

So in that now I’m going to do, I’m doing things out of pocket. So knowing like, I know that my daughter has trouble with auditory processing. No one seems to really understand or believe me, but it’s just comprehending things. I know the medicine already impacts her memory. So I know that, but it’s just kind of comprehending things, you know, dealing with like I said dyscalculia with numbers, um, just spelling. I said, let’s spell moon. And she says, M L L N there is no L in moon, but she hears it. And I said, well, let’s spell book B G G and then K there’s no G in book. So something is not, you know, working. And so I actually paid a hundred dollars out of pocket to take her to an audiologist and audiologist.

I’m like, this person’s supposed to help. And she just gave her a hearing test. She’s like, Oh, hearing is good. Well, that’s, I understand her. She can hear. But it’s something with the processing. So now I’m actually in the process of traveling out of state to find a pediatric audiologist that I found that just works with children.

You know, it’s, it’s a, it’s where family is, but having to literally leave the state, probably pay a couple hundred dollars out of pocket just to get some more answers.

Right. And we, we’ve traveled, we haven’t traveled that far, but we have traveled at times and, and my daughter still travels to see, um, her low vision specialist because.

It’s someone that she connects with well. She knows that she trusts what he prescribes for her and she knows that he hears her. And, um, and so that, but it, it is near family. So at least we can combine family visits whenever we go, but it’s unfortunate that we, I mean, and I even live near a big city, you know, we have families who are in remote areas.

They’re, they don’t have an option. They have to, to pack up and go to have, these, these visits to find out some of the answers there. The, um, so the first question I was going to ask was how, how was her hearing? So she’s hearing all the ranges of the sound.

Yes, she’s hearing, but it’s something about comprehending.

And so I’ve seen it when I’ve had a meeting at school, so that was kind of, um, guys back it up a little bit. So, um, with my daughter, I’ve homeschooled her since kindergarten, and I just put her in school. This, Kind of 2nd half of 1st grade, which was a tough decision. So far, it’s been all right. We’re taking it 1 day at a time, but have set up a meeting.

So, about a month ago, I had a meeting with the principal, the school nurse, the school staff. counselor and my daughter’s teacher and trying to explain, you know, these are the things I’m seeing, you know, when she brings home her work that she’s doing, she just circles every answer. And I say, well, someone correcting you so you know what’s right and what’s wrong.

And she just circles everything that doesn’t really, you know, show then that she’s been doing that since preschool where she just circle everything. And so just showing, I’m like, I can tell there’s something with comprehension as I’ve homeschooled her and just asking her questions. Some things, you know, she’s smart as an elephant, right?

And she gets it, but other things, you know, it’s just that she’s still struggling with. So, you know, realistically with my daughter beyond the epilepsy, you know, knowing that she still puts things in her mouth. So I still have to watch her, um, just other, you know, just other, the, she has a vocal tick, um, and each month we kind of rotate between ticks.

So it was a vocal tick. Um, then it was cracking her knuckles. Now it’s her eye twitching, um, which could be a seizure or the motor tick. And we just kind of rotate between them. Yeah. So it’s like in this, um, kind of going back to your question, you know, it’s like, we’re trying to, for me, I’m just trying to tackle everything at once, but it’s hard between, you know, having a dermatologist, a pediatric urologist, a pediatric neurologist, um, you know, child psychiatrist, regular counseling, and then her getting services, trying to do my best you know, at school and then still trying to find a pediatrician that left the practice and then the pediatric, you know, just like just everyone and trying to coordinate these things and get everybody on the same page.

And coordinating it. You’ve got the working with insurance with all of them and then even just copays alone.

And, and then out of pocket on top of that, with some of that, I don’t know how you do it. That’s, that’s a lot for, for one family to, to be juggling and, but it does, it does emphasize why we tell parents all the time, you are the one that has to be there to advocate for your child. Because. You, you have all these doctors and they may, they may retire.

They may, you may relocate, but you’re the only one as the parent who knows what the school’s saying. You know what the doctors are saying, you know what you’re seeing at home. No one else sees all of those pieces and you’re, you’re there for all those appointments. You’re there to kind of help tie it together.

So we, um, so I kind of want to unpack a little bit of this. So let’s go back to IEP process. Let’s talk about that just a little bit. Okay. When you, how did you start it? Did you, did you go into the school and request that whenever you transferred her into the public school or did she go first? And then did they come to you and ask, can we, can we start this process?

Good question. So I have been fighting since preschool. So my daughter went to, um, in preschool, she went to a private Christian preschool and the teacher had brought up some things just saying that my daughter was doing things that just were not what you’d expect. So like laying on face down on the floor or just staring.

Or, um, just all of a sudden start talking while the teacher is talking, just like having these conversations, things that maybe you wouldn’t expect a child to do. And she’s like, I feel like maybe there’s a delay. And I said, well, can you do testing? And they said, oh, we can’t do anything. So they kind of wiped their hands clean of it.

And then that’s when I did a charter school, but it was virtual school in a way. And I said, can you guys do testing? And they started the process within like a year and a half later, nothing became of it. So then that’s why I put on public school. Like, I want to get her tested. And so in that I try to make it clear ahead of time.

This is what my daughter’s dealing with. Thankfully with good school district, a smaller school. So with my daughter’s school, there’s barely about like, 300 kids. Her classroom only has 10 to 13 kids, which is unheard of. Yeah, very unheard of, but everyone’s really nice, very cooperative, but I’ve made my presence known.

So in that it has been hard to work, you know, when I’m getting a call at least once a week, you know, for my daughter, like, for example, they did, and they weren’t thinking about it, but they said, Oh, we did hearing testing and vision testing. And they didn’t let me know ahead of time, knowing that my daughter freaks out for things like that.

And I’m like, okay, I’m coming to pick her up because that’s just the end of her day. I’m like, Oh, guys, you have to let me know these things. Or, um, you know, there’s one time I felt so bad where I didn’t catch it and they didn’t catch it. She had a seizure in the classroom. And so she put her head down on the table and the other students were trying to wake her up and they didn’t like, she didn’t wake up right away.

And I didn’t know until after everything had happened. So, you know, in this kind of with the school, I’ve had to make my presence known. And so I’ve been in the office and I told them, I’m like, I’ve been in the office so much. I should just put a desk in between because I dealt with the school nurse. And then.

Um, yeah, trying to get them to give her her emergency like medicine since she has like two or three different medicines just at the school and trying to explain this and they’ve actually been really helpful. So they’ve done even referrals to the doctor’s office and been in communication with my daughter’s like specialist, which I appreciate.

And they’ve helped me get referrals that I couldn’t get, which, you know, I’m like, thank you. Just any help that I can get, I’ll take. But at this point, like, I’ve had that 1 meeting, um, you know, the principal, the school nurse, the counselor and the teacher, and then we have another meeting scheduled for the middle of May, but I’m still trying to like, oh, well, you don’t need a 504 plan because we’re doing accommodations.

I’m like, I need something. So, right now, my next steps to call the school district. to see if they can. I just I want her to just get tested for ADHD. And someone said, call the school district have to do it. And so my case, you know, school is done early June, so time is running out little by little. And so right now, I’m just just trying to get my foot in the door.

But right now, so I’m at that point where I’m still trying to knock on the door and I feel like someone opens the door, but it keeps getting closed in my face. I’m like, no, I need that door to be open so we can get someplace. So, you know, we’re doing accommodations. I appreciate the meeting, but you know, still my fear of like, okay, we have school testing coming up in May.

You know, the last my daughter had testing, she fell asleep. So I’m like, and she cried through it and she didn’t do well on it. So knowing that she’s not able to make it through that. So what is the plan? You know, that she just had her first field trip. Which she survived. It was rough, but she, you know, I let her go because at first I was afraid and the school nurse went, you know, but at this point I still feel like I have a long ways to go.

Have you talked with her much about her diagnoses and just, just school? Cause you know, cause you’ve gone from homeschooling now into the public school. So that was a shift to begin with and you had the other, the charter in between. So, so moving between the two, have, have you talked with her much about this yet?

And how, how would you advise to other parents? How much do you share and how do you share that information with your child?

Good question. So I think you really have to gauge like what your child understands and how much they need to know. With something like epilepsy, I’m really trying to, um, I don’t want her to be scared, but I want to be honest too.

I’m trying to get her to be more independent, like having to take her medicine. So I won’t always prompt her to do it. I’ll put it in front of her and she’ll take it. And so I’m trying to help her with that. I tell her, I’m like, okay, what you struggle with is you have too much lightning in your brain. And so that’s how I kind of explain it to her.

And, you know, parents that are listening. Yeah. Something that’s not as scary. Thankfully, she hasn’t had like tonic clonic seizures, but she’s had absent seizures and tried in the, you know, her doctor recently said, well, how many different types of seizures? Seizures does she have? And I’m like, I don’t know.

I’ve noticed at least maybe two, you know, and I get that it can be scary. And for my daughter, um, sometimes for her, her seizures like a popping in the back of her head. So she’ll cry because she’s like something popped in the back of my head. Um, doctors have said that’s a seizure. Others said, no, that’s not a seizure.

And I’m like, well, it’s something that’s making her cry. So in that it’s there and she knows and there’s nothing we can do to prevent it. And after it happens, um, I can rub the back of her head, but there’s nothing I can really give to her. You know, so that’s, that’s real. And she goes through it. Um, I told her, you know, at school that we don’t always have to tell everyone everything.

Um, I am cautious, you know, sometimes like when she goes to after school programs, summer camps. Um, you know, at church and the children’s ministry, other things, you know, kind of cautious about what we kind of tell people and what we don’t because I don’t want people freaking out. Um, even with family, you know, like I had, um, you know, family member like, Oh, we’ll just leave her with family and we’ll go to the movies.

And I’m like, no, I’m not going to just leave her with family because they don’t know the signs of symptoms, you know, and I get just, Oh, just go to the movies. I’m like, no, I know that at night. That’s when she has seizures. Um, I really work really, really hard to have her not get overly tired because it’s one of her triggers.

Um, certain sounds, you know, are difficult for her. So I don’t know, like, for example, just flushing the toilet can be a lot for her, so she has her headphones, you know, and sometimes not knowing, you know, okay, I just have my purse, you know, so just knowing what will be too loud for her, what will be upsetting for her, what’s a trigger, what’s not, you know, different things.

So, You know, in that, um, just speaking to parents to, don’t be afraid to get your children counseling. That was one thing that was a struggle because due to her age, like it was hard finding a counselor, like, oh, she’s too young. And so, you know, I was just trying to find someone, um, even like it took, I called over 14 people when my daughter was like almost four and a half, five, about almost five, right before she turned five and no one would see her.

And I’m like, well, I want someone to just talk her through this and process everything with her. And I did find a counselor through the charter school, but they’re like, oh, she needs a long term counselor. And I’m like, yeah, well, that’s the issue. I can’t find a long term counselor. Now I found a counselor and, um, it was good, but then their schedule didn’t match up.

So then they put us on the waiting list for three months. And then we found a new counselor. She was super nice, had one session, and then she left the practice. So now we’re back at square one. And sometimes now the counselors are like, oh, we only do virtual. And she just doesn’t respond well to virtual, you know, sessions.

So, um, she goes to counseling in school, but it’s different. She’s like, well, we just play games. And she’s like, I don’t want to talk in front of the other kids. And I get it because you’re six and you don’t want everyone knowing you’re business in it. So now it’s that whole thing to find a counselor that has a schedule that matches up that’s a good fit that just works out in the midst of us trying to move and figure out everything. So, you know, but don’t be afraid to just have a counselor just kind of step in or someone that’s not you as the parent talk to your child, because sometimes they open up more. Like for me, my daughter has this whole thing of, Oh mom, is this normal?

And I’m like, I don’t like that word normal because how do you measure normal? But in that to say, okay, um, you having hallucinations, I don’t want to say it’s not normal. It’s it’s technically it’s not, but in that just trying to leave space and say, okay, you know, what did you hear today? Or what did you see today?

You know, it’s like, well, I saw the Easter bunny at the airport. Well, I looked, I didn’t see the Easter Bunny at the airport. She’s like, well, I was on the school bus and another kid was biting another kid and he was dressed like a piñata. Likely that wasn’t real, but we just have to talk through it, not to alarm her, but saying likely that might’ve been a hallucination.

And I said, well, did your friends see it or how did your friends respond? And she’s like, I got really scared. So just giving her ways to cope because I can’t be with her when she’s on the bus. I can’t always be with her all the time. Okay. But in this, I can’t really stop what she’s seeing, but in it, we’re just tracking it and then say, okay, this does happen.

This is what you do and realize you don’t have to give into what you hear or what you’re seeing. But at the same time, it’s scary as a parent, because it’s like, well, my hands are tied, but I’m just trying to kind of prepare her for it, help her to be independent, but then still try and figure out what’s going on.

I’ve. I’ve seen a lot in like on social media and all of parents who have, they’ll start their day with like a different mantra with their kids, things like that. You know, you’ll see kids on Instagram doing, I am strong, I am brave. Do you do anything with that, like that with your daughter? Have you found anything like that that would help her?

Good question. So I’ve had to tell myself just personally that I’m capable and I’ve had to keep reminding myself of that because sometimes it’s just, it’s overwhelming. Sometimes like the doctor’s office will call and like, well, when do you want to schedule? And I’m just like, I can’t. Schedule one more specialist right now.

That’s going to have to go the bottom of the list, you know, and so with my daughter just telling her that, you know, she’s still smart, even though she’s not like the other students. So it’s been interesting. Like, um, with my daughter’s class, she has a, um, the teacher has her paired up with another kid that does like really well, which is good.

But then at the same time, I feel like it’s easy to compare yourself because she has someone that’s her same age who’s there helping her with her work. So it has its benefits. But to me, at the same time, it has its drawbacks because you’re thinking, she’s like, well, I’m not smart like her. That’s what she’ll tell me. And she’s like, well, mom, I, um, due to her memory, she had, she was doing something and she forgot where it was and all the kids laughed at her.

And then by the time I got to, you know, my daughter and she’s talking about the story, then she was crying and she’s like, oh, because I couldn’t remember and because I’m not smart and I’m not this. And I had to tell her different kids are better. are better at different things and other things. And, you know, it’s hard to tell her, okay, because you have your seizures and your medicine, this all impacts your memory.

And sometimes you’re just forgetful and clumsy too so that just kind of, you know, kind of rolls into my daughter gets hurt a lot. So in that, you know, it’s just like having to remind her, you’re okay, you’re special, you know, you’re one of a kind. I keep telling her, I’m like, you’re going to change the world someday and different things.

I keep reminding her of that. Um, but it’s hard when, you know, of course she sees her other friends, she’s like, well, why does my friend get to do this and why can’t I do sleepovers and why do they remember this and why can they dress like this?

When you’re going to find too, that you’re at the stage that it’s still hard because there are those huge differences.

But she’s going to find her tools with that support that she’s going to get in the resource room and the specialists are going to be working with her at school. They’re going to be teaching her some of her skills that she needs. She may not do the mental math as quickly, but she’s going to learn how to do a tally on the page.

She’s going to learn how to do something that’s going to be her way of keeping track of those numbers so that she can do her version of mental math. And she may end up being faster than the rest of them in three years. Right now though, she’s noticing that, that, that difference. And I’m, I’m with you whenever they have peer mentors within the class, when it’s the same age, it really is hard.

And if they get kids that are a year or two older, it doesn’t seem the same. Because they’re looking up to them, they’re supposed to be smarter than them already, you know, so, so it kind of helps with that. So, um, so it may be something to kind of put in the back of your mind, a conversation may have to happen sometime asking.

Can we have a teacher’s aide in there that’s helping her instead of another child so that she’s not feeling that way? The, um, I think, and I’m just, I haven’t met your daughter, but I’m thinking she just needs to be poured into, to know how beautiful she is, how smart she is. How, and, Special in a good way, not special as in you’re different special, if you can find the way to make sure that she’s hearing that message, which is what what I think you were saying that, that she, she was created as a special person.

Um, and she has a lot to offer because she has friends. In spite of all these things she’s having to face right now, she’s making friends at school. And that’s, that’s nice to hear.

Yes. That’s true. And thank you so much for just your kind words. She’s my social butterfly.

I’m tired listening to how many different specialists you’re already working with.

And then on top of how many you’ve had to switch in such a short time, you’re a single mom. When do you work? You’re running all over the place right now. How are you balancing um, work and, and I mean, I know she’s in public school now, but you can’t totally just let go and walk away. You’ve got to be on call all the time with that too. And getting those relay phone calls with all the doctors and therapists and everything. How are you balancing all that?

Yes, so as of last year, it gives my head like 2 or 3 jobs at once and then started something my own. So I was a notary and then working multiple jobs and that it was just too much. And then, um, doing something from home and then that became a little too much too, um, as of recently.

So I’m a registered behavior technician. So I’m working with kiddos that have special needs and doing that part time. But as you know, that’s still a lot of times doesn’t pay the bills like it’s for as much work that we do. Like I love the kids and we feed them. We’re potty training them, trying to keep them from eloping and keeping them alive and teaching them all these things.

And it’s rewarding, but at the same time trying to check my phone while trying to check on them, make sure they’re not choking and taking them to the restroom and potty accidents and other things. So. So honestly, I’m taking it one day at a time. I don’t get child support. I don’t get alimony. So for those are like, oh, I’m sure she gets something on the side.

I have, um, in the process of starting something else for myself. So, um, becoming a life coach, um, which has been an exciting journey. Um, it has not I’m still in that 1st kind of year. So don’t have that income coming in, but little by little, I’m like, I know that it’s going to come. So it’s providing with that flexibility.

But right now, just having to kind of work part time while I can and then I do inspections. To make sure things and I’ve worked with the company doing field inspections. So that’s kind of nice because it’s like, okay, I do an inspection for an hour and it helps out. But it has been hard trying to find something that’s work from home, but that pays, like, I’ve done things like in the field, but that’s just as hard trying to kind of get back and forth between my daughter’s school.

Like, as I stated, like, for me, a lot of time, I get a call at least once a week. You know that something’s going on or they say, Oh, you didn’t sign this paper or, Oh, the school nurse calls. And she’s like, Oh, I need this. And then they’re like, Oh, you missed a signature. And then trying to email my daughter’s teacher and say, okay, where’s her homework?

And she’s lost 5 jackets and all these different things. And, you know, they pick her up at one gate, and my daughter’s at the back gate and she’s like, you forgot about me. And she’s freaking out, you know, all these different things. I’m like, okay, can she wear her sensory necklace in the class versus not wearing it? And is she still, because my daughter said she puts things in her mouth, she’ll eat holes through her t shirt.

So it’s all these different things, you know, that we’re, we’re dealing with at the moment. I’m like, okay, make sure she’s not putting things in her mouth, you know, in the classroom because she does it at home. So I’m kind of going back to your question. I still work because I have to eat. But at this time, um, that’s kind of the challenge I’m facing is to move close family to really have more support.

But that means moving out of state, but then also being a caregiver to family. So going from taking care of just my daughter, where I am to now taking care of my daughter, my mom and my grandmother, which, you know, would be interesting. That’s just me once again, taking care of three people, but then I get family support or moving to another state that’s cheaper, but having no support, which I’ve done before and I made it work or staying where I am and being close to my dad’s father. Um, but in this, um, he’s not really kind of believing it. So that’s a kind of another piece is that it’s 1 thing when you’re co parenting or you’re co parenting with someone that doesn’t like, believe that your child has something going on or really doesn’t see it.

See it because he’s not the one, you know, at the doctor’s appointments and speaking to the specialist, it’s just me. So at this time he is like, well she doesn’t need medicine, we just need to love her more. And I’m like, no, she can die from this. You know? So for those that are going through it, I get that it’s hard when you’re just trying to really convince you, it’s hard enough to convince school what’s going on. But then I have to convince family too is just as hard.

But a lot of times I know the extended family are hard, but, um, but you’re talking about more your immediate family that’s even. That’s even more that you’re having to carry with that.

Exactly. They’re just like, Oh, well, she, you know, the whole thing, they say, Oh, if the child doesn’t eat, you know, they’ll just, I said, I’ll give my daughter something to eat.

Like, Oh, she doesn’t eat. Um, she’ll eat it eventually. And I’m like, no, you don’t get a lot of times the kids that have special needs. If you, you know, if you put something in front of them, they just won’t eat. And then we just had this whole other slew of issues, you know? So it’s just like. Yeah. Exactly.

Kind of get people to really understand they’re like, Oh no, just leave it there. Show you to eventually like, no, that plate’s been here for two days. You know, so.

You mentioned that you’re, um, that you’re starting to work as a certified life coach.

Yes.

Do you have any specific advice or tools that you found helpful that you want to pass on about raising children with special needs?

Yes. Um, a lot of different things. So just really being kind to yourself. Um, so my niche is a little bit different. So I work with, um, women that are struggling due to infertility, miscarriage and also single moms by choice. So moms that are deciding to adopt and foster. And so for me, um, I’ve been in all three seasons when I speak to women, especially starting their family on their own, realizing that things are not going to always turn out as they want to.

As you plan them to, but realize that you can do this because I know a lot of women that are going into it or that are single parents. And they’re just like, Oh, how am I going to do this? When I do about childcare, I don’t have support. And I’m like, you know what? You’re going to find a way to make it work.

You’re going to find community. You’re going to find like for me, support groups, even Facebook groups just help. Like sometimes I don’t even respond, but I’ll just like heart emoji or that care emoji or whatever it is, you know, just to have that connection. But it’s, you know, other people where, you know, they have teenagers that have special needs.

And I’m like, that’s going to be me someday, you know, and saying, okay, their child can’t get a job or they can’t drive or, you know, sometimes up at three in the morning and say, okay, are people going to be kind to my daughter? And many parents I’m sure that’s, you know, that’s what they’re going through. For me I watch my daughter sleep too, just to make sure she’s okay. But just thinking, okay, there are those days. How am I going to do this? How are we going to make this work? Okay. But for parents that are going through it, just realize that when you feel like all your strength has been depleted, like somehow this reservoir of just kind of strength will come and it’ll find you and you’re like, well, how am I going to keep going?

But it’s that whole thing of like, I’m capable. I’m enough. You know, it’s a lot right now. Sometimes you do have to step back. Sometimes people are not going to get it. You know, sometimes your job’s not going to understand. As I say, sometimes family’s not going to understand. Sometimes things are going to be tight financially.

Sometimes you’re just going to have those you know, moments where you just have to say, okay, just breathe. A lot of times I just have to just breathe. And.

Tell my listeners how they can, can work with you if they want to, to connect with you.

Yes, I’m always here. So for me, it’s something I’m passionate about just encouraging others and loving on others.

And just if I give free hugs all day, I’m like, that would be just great. For me, I just know how it is when you just feel isolated. The name of my business is Fresh Start Life Coaching, LLC. And my email is fslcpodcasts at gmail. com. I do offer initial consultation, but even beyond that, if you just want to talk or just get guidance on like, You know, saying, okay, I’m thinking about putting my child in school.

I’m thinking about homeschooling my child. What do I do next? You know, I can speak to both of those. You say, you know, how do I contact the specialist or how do I get my voice heard? You know, I can help you with that. If you’re just trying to come up with a list of questions, you know, I can assist with that.

If you’re dealing with just coparenting, you know, that’s a whole nother thing or just, you know, If you’re in something that’s toxic, I’ve told people, you know, don’t stay in a toxic relationship or toxic marriage just because you’re like, well, I don’t know how I’m going to raise a child on my own. And, you know, different things like that, as you know, like, um, rates of child abuse and even domestic violence are high, you know, for families that do have, you know, at least one child that has special needs. It’s, it’s makes sense in the midst of all the stress and the wear and tear. So, you know, I’m here to listen.

We’ll put your contacts in the show notes too, so that if anyone wants to reach out, they can. They can find you. And, um, so that that’s probably the best way to, to do it there. Um, so switching gears a little bit here.

I’ve been this season, I’ve been having my guests repeat a statement that I read and then finish it. As a way of giving advice to our listeners, and we’ll use this listeners. You may, you may see these show up as, as different clips here and there on social media, but um, but it’s, to me, it’s kind of a fun way to kind of wrap up everything and, and pass on some final words of advice.

So the first one, the biggest challenge I faced in raising my daughter with special needs is…

okay, yes, the biggest challenge I face rating raising my daughter with special needs is just that guilt and feel like I’m not enough. So those 2. so really having to release the guilt as I said, you know, my daughter was at school and had a seizure in the classroom and saying, I should have been there.

I’m a bad mom. I should have stuck with homeschooling and just feeling like I’m not enough. And trying to be, you know, in all these places saying, okay, why, you know, sometimes when it comes to specialist appointments, I can only do so many appointments at once. And sometimes I’m like, well, I should have been able to schedule five specialist appointments.

Why, why not? You know, but just saying, no, she can only handle so much. I can only handle so much, but you know, in that it’s just really having to be kind to myself, releasing the guilt and just realizing that I’m doing the best that I can with what I’ve been handed. That’s it.

All right, let’s try number two here.

So we have one thing I wish I knew starting out as a single parent of a child with special needs is.

One thing that I wish I knew is that, um, the importance of just standing up for my daughter, um, like advocating for her. Like a lot of times I just kind of thought, oh, okay, well the doctor’s going to do the referral so I don’t have to follow up.

Oh, the school’s going to just, you know, send her for testing and I don’t have to stay on them. Oh, family’s just going to understand. They’re going to get that I can’t do this or I have to say no to this. And yet in all of these arenas, realizing that a lot of times people just kind of do the bare minimum, it feels like these days.

And so. So in this one thing that I wish I knew was just advocating for her earlier.

You’re, you’re doing a good job with that. One thing that, um, I didn’t cause it was early in my walk. I didn’t understand back when my daughter was in preschool, but I would pick her up every day from preschool and kindergarten and have her screaming to the car because she was utterly exhausted.

She had used every ounce of her energy just to visually keep track of where her teacher was, where her friends were, where the toy was, and sorting through all those bright colors in the room. And so you’ve already learned how to use those words to pinpoint, not, can I please have this, but this is what my daughter needs.

This is why she needs it. This is what we need to do. It’s, it’s, it’s non negotiable. You’ve already put it out there. I didn’t have that skill, so I commend you on that. Um, but parents listening, Listen to that pattern. It’s not going to be the same for your child, but if you can identify the what, the why, and what the solution is, you’ve already won the battle because now you’ve been able to lay it out so that you know that you’re, you’re able to advocate for your child very effectively if you can state it that way, because now you’re not trying to ask permission for something.

You’re coming in a point of strength and saying, you know, I’m, I’m, I’m here. I’m helping my child. This is what we need to do. And this is why, and not many are going to argue with you on that one. So, so that very, very, very, very good example there of how to do it. And I, I appreciate the way, the way that, that, that you worded that.

Okay. So this is the longest one. So the most important thing I’ve learned about myself through this journey of raising a child with special needs is.

For me, it would just be this inner strength, like just realizing, I know people say it’s cliche, but they say, Oh, you don’t know how strong you are until you have to like, go through something.

For me, I’m just like, learn the strength that I didn’t have a choice, either be strong or not. Like I’ve got to be strong for her. Cause I’m like all she has. So.

All right. So we have two more of these are shorter. Now my hope for other parents raising children with special needs is.

My hope is that you still, um, are able to just show them that love and be that kindness that likely that they might not always see in the world.

So that’s just my, my hope that you’re still able to love them and show them that they have value.

All right. So final one, this is the easy one for you, I think. Self care for me as a single parent looks like

self care for me, sometimes it’s just taking a nap. Sometimes they’re not intentional. I’m on the couch. I’m like, Oh, no, I fell asleep. But in that, um, it’s just like, uh, with my daughter, she goes to school. And so sometimes she’s at the after school program and I was a little leery. Sometimes it has its ups and its downs, but sometimes she’s like, mom, I want to stay later. And I was trying to pick her up right after school, but I’m like, what’s there.

So why not use it? So sometimes self care is letting her stay maybe an hour and picking her up and maybe just watching a movie, maybe just eating a meal. Like, I went to Walmart today and just walked around and I’m like, okay, it was nice to not have someone ask me for a toy. Self care sometimes it’s like, okay, letting her dad take her an extra day.

Sometimes like, I feel a little guilty, but it’s kind of nice because then I can get things done or work a little, um, you work extra or plan something fun for us or different things like that. So, you know, I try not to go overboard, but sometimes it’s just giving myself that hour to just eat a meal and sit down, you know, or just like, maybe not scheduling appointments for her for a week and say, we can schedule them next week or, you know, even like recently I was sick while my daughter was sick and I took myself to urgent care and I said, Danielle, you took care of yourself and I’m like, I was kind of like dying in it, you know, and everything, but, um, I’m like, okay, why is it you can take your daughter to her five appointments, but you can’t even take yourself to urgent for what you feel bad about.

I’m really having to sit down and do that. Maybe it’s just getting my hair done for an hour. You know, I don’t do anything expensive once again, but sometimes it’s just little things like that, or just going to the bookstore and walking around.

Well, thank you for spending the time today to go through this. You, um, you’ve given us some really good information, a lot to think about. And I know parents that are listening at different stages are going to, to pull information from this. So thank, thank you so much for being here today.

Yes. Thank you for just having me and for letting me be here. And just thank you for those that are listening.

I know you can be doing lots of other things, but I just hope that something that was said just encourages you, gives you that strength. And lets you know that it’s not all in your head because sometimes people just say, Oh, you’re just, you know, your kid’s just sensitive or they’re just growing up or they need to toughen up and you’re like, no, there’s something seriously wrong, genuinely wrong.

So just know that, that it’s not just all in your head. You know, you’re the parent and you notice the little things. So, you know, be in tune with that and listen to it and act upon it.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

In this interview, Tonya Wollum, the host of the Water Prairie Chronicles, chats with Latisha Anderson about the challenges and triumphs of raising a child with a disability. Latisha shares her perspective on how parents can empower their children to overcome limitations and setbacks. Latisha shares some of the setbacks she has faced in her own life in addition to having a learning disability, and she speaks of her role today as the parent of a child with special needs.

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

****“They Said My Child Couldn’t…”:**** Show Notes:*****Watch How This Mom is Advocating for a Child With Special Needs.*****In this interview, Tonya Wollum, the host of the Water Prairie Chronicles, chats with Latisha Anderson about the challenges and triumphs of raising a child with a disability. Latisha shares her perspective on how parents can empower their children to overcome limitations and setbacks. Latisha shares some of the setbacks she has faced in her own life in addition to having a learning disability, and she speaks of her role today as the parent of a child with special needs. Here are the key takeaways:

Don’t perpetuate limitations: Instead of focusing on what a child cannot do, emphasize what they can do.
View setbacks as learning experiences: When a child encounters a challenge, reframe it as an opportunity to learn and grow.
Be your child’s advocate: Don’t hesitate to question or challenge professionals if you disagree with their recommendations.
Collaborate with professionals: Work together with professionals to create the best possible environment for your child’s success.
Foster a strong and independent mindset: Encourage your child to be their own advocate and to believe in themselves.

IMPORTANT NOTE: This conversation does touch on some mature themes, so please use your discretion if you have little ones listening along.

Connect with Latisha:

Website: https://accf.coach/

Order Latisha’s book, Embrace Your UGLY:

https://amzn.to/4dwLGJe
( As an Amazon Associate, I may earn from qualifying purchases. )

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Latisha Anderson is an experienced Master Mindset Coach who has helped countless individuals, corporations, and groups transform their lives. Her expertise lies in providing her clients with the necessary tools and resources to evolve and achieve their goals. With her guidance, clients can develop a positive mindset and gain the confidence to overcome any obstacle. Latisha was diagnosed in Kindergarten with a Learning Disability, and she was in SLD until she graduated high school.

Episode #96: Is Your Child’s Potential Being Limited? How Advocating for a Child With Special Needs Makes a Difference!***“They Said My Child Couldn’t…”: Watch How This Mom is Advocating for a Child With Special Needs.***###### (Recorded April 8, 2024)

Full Transcript of Interview:

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

****Letters to Zachary: How Jason Turned His Grief into a Safe Space Where Dads Grieve Too.****Show Notes:*Dads Grieve Too, How “Letters to Zachary” are Helping Others Heal*In this powerful interview, Jason, a father who tragically lost his 15-year-old son, shares his story of resilience and the unexpected path grief led him on. He sheds light on the challenges men often face when dealing with loss and the importance of open communication. Inspired by his son, Zachary, Jason created “Letters to Zachary,” a Facebook page offering support and a safe space for others navigating the difficult terrain of grief. This conversation is a must-watch for anyone seeking hope, understanding, and a sense of community after loss.

Connect with Jason:

Facebook Group Letters to Zachary:
- https://www.facebook.com/profile.php?id=61552174684952
Instagram:
- https://www.instagram.com/letters2zachary/

Grief Support Resources mentioned:

Tony Lynch Grief Support for Men:
- https://www.facebook.com/tony.lynch.188
- https://www.linkedin.com/in/tony-lynch-8035b6173
Portia Booker:
- https://www.linkedin.com/in/theportiabooker
Donna Ashbrook poetry
Michelle Deville:
- https://www.micheledeville.com
Liz Newman poetry:
- https://www.instagram.com/liz_newman_writer_
Gary Sturgis, Surviving Grief Facebook Page:
- https://www.facebook.com/SurvivingGriefGarySturgis

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Jason Tuttle, a dedicated husband and father, navigates the complexities of raising two special needs children with rare conditions. In 2022, he faced the unimaginable loss of his 15-year-old son, Zachary. This experience ignited a passion to help others. Jason advocates for grieving fathers and finds solace in “Letters to Zachary,” his Facebook support page for those facing loss. Through his story, he offers hope and connection to a community facing similar challenges.

Episode #95: Dads Grieve Too: Breaking the Silence on How Men Handle Loss***Letters to Zachary: How Jason Turned His Grief into a Safe Space Where Dads Grieve Too.***###### (Recorded April 3, 2024)

Full Transcript of Interview:

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

****Is Self-Care Selfish? Why Putting Yourself First Makes You a Better Parent.****Show Notes:*Feeling Overwhelmed? Self-Care for Special Needs Parents*Struggling to find moments of calm amidst the chaos? This interview with self-compassion coach Robyn provides practical strategies of self-care for special needs parents. Discover how breathwork exercises and mindfulness techniques can help manage stress and anxiety. Learn the importance of building a support network and overcoming feelings of isolation.

You’ll also find:

Simple self-care practices that fit into your busy schedule
Tips for combating parental burnout
How self-compassion can revolutionize your parenting journey
Free resources to get you started on your self-care for special needs parents journey

Don’t wait! Listen to this interview and discover how prioritizing your well-being can make you a happier and more effective parent.

Connect with Robyn:

Website: https://www.sarahsoulboss.com/
IG: @sarahsoulboss

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Robyn Vasquez-Gutierrez is a Board Certified Behavior Analyst and Self-Compassion Coach, specializing in Acceptance and Commitment Therapy. Her extensive background encompasses providing ABA services, supervision, caregiver engagement, and mentorship. In addition to her work in the field, Robyn has held various leadership roles, including positions at an insurance company.

She dedicates any available time to deepening her knowledge of Acceptance and Commitment Therapy (ACT).

Episode #94: Finding Calm in the Chaos: Self-Care for Special Needs Parents***Is Self-Care Selfish? Why Putting Yourself First Makes You a Better Parent.***###### (Recorded April 2, 2024)

Full Transcript of Interview:

Tonya: Robyn, welcome to Water Prairie.

Robyn: Thank you so much for having me. I’m so excited to be here today.

This is, this is interesting cause you’re gonna be bringing a topic that we haven’t talked about before. We have talked about self-care before. We’ve talked about just how important it is, but we haven’t necessarily given a lot of tools and tips to help solve the problem, and this is where I’m excited.

The, um, The Water Prairie Chronicles, we focus mainly on trying to encourage and support parents, especially these children. So, parents who have children with disabilities or, um, developmental or intellectual disabilities, different types of issues that they’re facing. Sometimes maybe it’s just really emotionally intense kids, but, um, but a lot of our kids feel pressure that they have to pretend that everything’s okay all the time.

And that’s why I thought this might be a fun topic for us to really get into. Can you share why it’s important for parents of special needs children to acknowledge and accept the challenges that they face instead of pretending that everything’s just fine?

Yeah. Yeah. Well, I think, I think that’s a beautiful question and a million-dollar question.

And I never want to assume that I understand these parents reality. I am a parent myself, but my son is neurotypical. And I just think I’ve worked in the special needs population for most of my career. So, I actually worked as a board-certified behavior analyst with mostly with the autistic community. I worked and supported other children that had different developmental disorders and needs and special needs.

And with that, I supported the family. So, I really saw firsthand in their home, how they do exactly what you’re talking about. They, there’s almost like this mask that we put on that they put on, I should say, that’s like, everything’s fine. This is my life. These are the cards I was dealt. So, I just have to deal with it.

And I would say why it’s so important to lean into the reality or to be honest and learn to ask for help is because. They’re going to burn out just the reality of their life is difficult. They’ve been dealt some difficult challenges and if they don’t have this community, this, um, you know, the village that they can call on and ask for help their, their levels of burnout are going to be so high.

And I know that, like, 1 of the 1st things that you ask a parent, um, you know, you ask them about their worries. They are worried about the here and now, but that 1st and foremost, they’re worried about the future, right? What is, what are their children do when they’re not here and. How do we get them, you know, how do we help them live a life that is meaningful to support themselves throughout that process?

So I think it’s just so important that they lean into the reality that they learned to ask for help and that they rely on their community and the people that can lean in and support them. So, they don’t feel so alone and isolated.

You know, I was at the store the other day and, um, my husband and I’ve been traveling for a couple of weeks and I’m at a, actually it was, it was a Target store.

So we’re in, you know, it’s nice and clean and all they had all the carriages lined up and I see a mother come in that has a little boy. using a cane and he looked like he was maybe five or six, could have even been as old as seven. And, um, and he was not a happy guy. He’s, um, he’s bad-mouthing his mom.

He’s just, I mean, the language that, that came out of this child was just very, very shocking for me to hear. Um, and so she’s trying to get the cart out that he could sit in the, they had a couple of them for, for older kids to be able to sit. And. Other customers had been putting their carts in front of it.

So it took her a moment to kind of get them moved the whole time. He is just belligerent, the whole, whole thing that he’s saying to her and all. And so she finally pulls the cart out by now he’s laying on the ground. I can’t even repeat what he was saying. Cause it’s not language that I even use, but she’s saying, you know, well, I’ll, I’ll, I’ll buy you some candy. I’ll buy you a toy. He’s like, I don’t want to candy. I don’t want to,

I just want to go home. And, um, and she’s like, you know, I’m sorry, I can’t, I can’t control that. People don’t know how to put their carts back. And so she finally gets the cart out and she’s looking at me and I have a child who’s visually impaired.

And at, at his age, she refused to use a cane. And I thought, you know, well, it, it probably can’t hurt. Let’s see if I can, can interact with him so she can get the cart out. And of course, then he just turns on me. He does not want anyone. He just wants to go home. So, long story short, he got what he wanted. He got to go home because she was just so exhausted.

She couldn’t even pick him up off the ground to get him into the cart. And so, so they left. And as she walked by me, I told her she was, she was, she was doing a good job. Just, just, just to hold on things were going to get better. Um, and she, she just whispered a quick, a quick thank you as she went by, but I couldn’t help thinking about this interview coming up and thinking, you know, We, she, she, she was beyond saying everything’s fine.

It was obvious that things were not fine, but she had gone through the bribery thing, she had gone through, you know, all the things that we, as parents know that we’re not supposed to do, but you could tell she was, she was at her end and she probably just needed two things. And they were on the way home from something and it was just going to be more to go back out again.

But, um, but I thought, you know, this, this poor mom is the only way I can think of it. You know, a lot of us have been in that situation where we’ve had the meltdown, we’ve had everything else. And to me, the punishment was, we’re just going home. So, in her case, the punishment for herself was, but he got what he wanted.

So she really was in a no-win situation there and totally exhausted by the look on her face. So. You know, that, that pressure to conform to the normal parenting standards, which would be to discipline him to, to take him out to the car and talk to him or whatever your form of discipline may be. I’m not going to pass judgment on anybody there.

Um, I, I don’t know that that was, I don’t, I don’t think she even felt like that was even worth it, but she did go through those normal ones of the bribery or trying to convince him to do things. But I think that makes. It feel even more isolated because she’s in a situation where she really couldn’t in, in her mind, at least it looked like she didn’t know what else she could do other than just to give in at this point, um, You know, it’s like, how does that, that pressure to be that normal parent, like whether it’s to reprimand them or like when he’s laying on the ground, there were other things that are leading to him being on the ground.

And from what I could observe, he had no vision at all. So, her parenting of him is going to be a little bit different just because of his physical needs with that. We have, you, you mentioned, um, kids that are on the spectrum.

There’s going to be times where they are so overstimulated that they’re going to be on the ground.

And it’s not because they’re having a tantrum. It’s because they’ve reached the point of where they cannot take any other sensory input and they’re just trying to get away from it. So, our parents, they’re not going to be doing that quote, normal reaction that other parents do. How does that lead to that isolation that they’re experiencing?

Oh, my gosh. I mean, how could it not? And I thank you for sharing that story. And I just think about that mom and she must honestly be thinking about you still because I assume too that these parents when they go out in the community and this is happening, they’re like, not again, right? Like, I’m also being judged now for how this looks and how I parent and how I present.

Where these people don’t understand, they don’t know what it’s like to live in my shoes. And yeah, I just needed two things. And now my whole world, you know, now my whole night, you know,

who knows what it was.

Yeah, yeah. It could have been something so simple. Um, and yeah, so they, they, they take on this judgment or perceived judgment that’s happening.

So it’s just so beautiful when more and more people like us can reach out in the community in real-time and kind of offer some support, even if it’s not accepted. Um, I think that goes a long way. So. That’s super beautiful. And so remind me of the question. I, I kind of segwayed from that.

Well, just, just how that those situations, how does that contribute to how isolated they might feel?

I mean, yeah, like I said, I think it, there’s no way it couldn’t. I think the other thing that comes to mind when I hear you talk about this is. Parents in that situation are managing the behaviors of their children while at the same time trying to manage their own reaction, right? This kind of behavior can really trigger something inside of us, whether it’s a childhood wound of our own, because we weren’t allowed to act that way, or we weren’t allowed to have emotions in that way.

So it creates this trigger for us. And then people are looking and all of the things. So, that also Contributes to feeling isolated, feeling alone because they’re like, no one else gets this. No one else understands. So, I’m just going to go back to my bubble, back to my world where I can kind of shut it off and not have to let the world in and see what’s happening.

I think sometimes too, um, we may have that feeling of guilt when we’re in that situation. Um, definitely you feel like you’re being judged by everybody around you. It’s, you know, it’s, and even as I was interacting with her, I was watching the other quote, well meaning customers who were around us who were walking away, they, they, a few of them didn’t even get a cart during that time because they didn’t want to deal with.

Being there. And I think some of it might not have been a judgment side, but I could see how that could come across to this mom and probably led to her leaving instead of trying to just kind of put herself in a bubble with him for a moment and figure out what to do for him and ignore everybody around her, because I think she could have actually salvaged that trip and gotten what she needed if she could have blocked out all the rest of us that were around her.

Um, and some of the people, what I was thinking is, so, so she’s responding to all their looks and their stares and they’re almost shunning as they walk away from her. But I think the people that were observing it were just as frustrated because they didn’t know what to do and may not have known. They may have had compassion.

They may not have. And of course, if they watch me try to interact, they were going to go even further because it did not work, but, but at the same time, you know, it’s like mom to mom, if I had been her, I don’t know what I would have done either. I would have also put up that shield saying, you know, no, I’m, I’m fine.

I’ve got this, you know, um, but it would help if we could actually let another mom help us or let, right. Okay. Another customer helped us, you know, maybe grandma’s had a grandchild that she’s been through with this, but she didn’t know how to. Intrude on that.

Well, it reminds me of the conversation we were having that sometimes we don’t know that we need help until we’re too far past the point of needing help.

And so this mom in that situation, she probably could have used help, but because it was already an escalated situation, maybe she wouldn’t even know how to respond to that if someone asked, because at the, at the core of it all, it comes down to communication, you know, us on the outside of the circle, how can we communicate and ask these families, you know, What do, what do you need?

How could I be supportive to you? And how can the family, the parents with special needs, um, children with medically fragile children, how can they respond to that? Well, they can do that better if they’re, if they actually evaluate that question from a less escalated place. So, when things are kind of status quo, when things are a little bit calmer.

Maybe that’s a great way to kind of think about like your values. What’s important to you. How do you want to ask for help? How do you want to actually accept help? Cause asking for help and accepting help are two very different things.

Yes.

Oh yeah. I think that that was kind of the perfect storm because it was already escalated.

And like you said, those people who might’ve had a lot of compassion, perhaps. You know, perception is everything. So, perhaps they’re like, well, I don’t want to interfere. I just, it’s better if I step back. And in that moment, maybe it was because, you know, the child’s response to you, but we don’t know until we ask.

And we we’ve talked about, there’s, it’s probably been about a year now since we had the interviews, but we’ve had a few where we talked about how, when you have a newly diagnosed infant who’s you’re bringing home. How can the family and friends support that, that new mom? And, and I think, you know, a lot of times we think about that where, you know, like not, not just bringing them a meal, but maybe cleaning up a dish or something and supporting them there.

But we’ve never really talked about how do you support somebody after that point? And this is a case where. We do need to continue supporting each other as, I mean, even if your child isn’t diagnosed with a special needs, you still, as a parent can understand those bad days, we all, we all have days where stress just gets away and, and it’s, as our kids are growing, as they’re learning independence, they start pushing back a little bit.

And so we have different situations where we. We can still relate to how this mom might have felt and if this mom is listening, I don’t know who you are, but I, I hope you’re getting encouragement from this and not feeling like, like we’re just criticizing cause we’re not, we understand where you were that day.

You want to help you. Um, yeah, we want, we want to help. And I want to help those that are listening that might be in Target one day seeing somebody else having a hard time or in the grocery store, wherever you might be, um, interfering isn’t always the way, but sometimes maybe just moving things out of the way so mom can take care of it or, you know. something. It’s, um,

yeah, reading the room.

Yeah. Yeah. Let them have the space for a while. Um, but I, but I want our parents no matter who they are to feel like they can be in society, they can be out doing things. And it’s hard. Sometimes the amount of work that it took to get out the door, especially our medically fragile kids, there’s so much equipment they have to pack together.

They have to plan to make sure feeding schedules are in place. You know, all the, what ifs that might happen while they’re out just for a simple trip to the grocery store to, to go pick, pick up a tube of toothpaste because they ran out, you know, it’s not easy to do, but they need to be, be free enough to do this.

So, um, so switching from that situation, um, I wanted to think a little bit about still thinking about, about these parents here, the, um, They have all the stress. We’ve kind of described that. How can they find that healthy balance between caring for that high-needs child and taking care of themselves?

Cause that seems impossible. I think a lot of times, and you’re going to sacrifice yourself over your child every day. So, do you have any tips on how they could kind of. Make that transition to make sure that they are caring for themselves?

Yeah, I think so. And again, I never want to miss the mark and, um, what I’ll say, you know, I think you find what works for you and figure out like how to incorporate, like what feels good in a way that contributes to your wellbeing over time.

And so I think the first thing that comes to mind for me, and no matter who I’m talking to is identify your values, like first and foremost, like, what is the most important to you? Who and what is the most important to you? And. I’m sure it’s your children, right? Are going to be number one. Um, but I would say, don’t forget yourself in that process.

So are you important to you? Are you important? Because going back to that thought that most parents have of like, what’s going to happen when I’m not here? Well, we want you to be here for as long as you can be. We want you to be emotionally available, accessible. All of the things that you need to be in order to show up for who and what is most important to you.

So identifying those values, I think the second thing that comes to mind is we’ll be here about self-care. I mean, it’s such a buzzword right now. Um, everyone’s talking about self-care and the media is selling us self-care in the term, in the form of, um, you know, external things, massages. Facials, getting our nails done, getting our hair done, um, getting our makeup done, buying clothes, like whatever it is.

And I’m not saying that those things aren’t self-care, but those would not be where I would recommend you get started. Right. Those are external things. So, I think, um, some ways that these parents can really start to balance the, the balance between really showing up for their children and being there while also taking care of themselves is building in small, actionable steps daily.

Like, um, I’m actually a breathwork physician. Facilitator and training. So, our breath, for example, is something that I always recommend to people. Um, one, it’s free. We can always breathe. It’s free. It’s accessible to us. Um, but there’s really a beautiful benefit of. Intentionally breathing that it has on our nervous system.

And so that is self-care because you are literally taking care of yourself today in order to show up better tomorrow and the day after that, and the day after that, and so on and so forth. So, you get to think about your future in that way, instead of. Um, maybe some of the worry that’s coming up, I’m not saying the worry is going to go away.

That might still be there, but we’re going to try to balance it a little bit more. And your breath can do that. You can really kind of drop in and just even listen to like, what are my thoughts telling me? Because these parents are, um, Living on autopilot, you know, they have to, they have to make the next decision, the next choice they have therapies and equipment and deductibles and doctors and all of the things like they have a lot to get done in the 24 hours that exists in a given day, but if they can slow down and just breathe for 10 seconds, and then that 10 seconds turns into a minute and then five minutes, you know, little sips.

Of breath each day can really have a beautiful impact. So, I think start there, start small. And when you evaluate your values, who and what’s important to you, um, you can start to build in other things that really feel good to you. Maybe it’s some movement, maybe it’s getting outside for a five minute walk, tagging someone else in and saying, I’m taking five minutes.

I’m taking 10 minutes to myself because I deserve that. And my worth. My worthiness is not dependent on the things that I accomplished this day or the behaviors that my child did or didn’t engage in today. I am worthy of this because I exist.

That’s very good advice. Um, I, I, I like that cause I was going to ask you how to, how to incorporate that in. So, you’ve already, already jumped, jumped ahead of me on that one. The um, So you’re a self-compassion coach.

Yeah.

Tell me exactly what that means.

Yeah. It’s a, it’s a confusing, confusing word because

I haven’t seen it before.

Yeah. Well, and I think self-love, self-compassion, all of those things kind of overlap. And I would say to me, compassion is. Treating yourself like you would treat your best friend, being your own best friend, being your biggest cheerleader. And I think, um, why compassion and self-love and self-trust are so important to me is because I, I do know firsthand the impacts of anxiety and how the voice of our inner critic can really, um, Um, be detrimental to our mental wellbeing, to our emotional wellbeing, to our mental health.

And so when we can start to foster and develop this self-compassion and learn to treat ourselves, like we treat other people, like we treat our friends, um, when we can learn to identify like, okay, the voice of my inner critic is here. What, what is she trying to teach me? Like, what is the lesson versus taking that as truth?

Then we start to transform. So, to me, I just want. Um, you know, I primarily support women, um, caregivers. I really want women to learn to love themselves. And I think as moms, especially everyone wants a piece of us. And so we put ourselves on the back burner because I mean, especially you, you have children in general, right?

Especially they’re young, they’re going to different things. And then you add on. This layer of having special needs being, you know, having a child that’s medically fragile, like, of course, you’re the voice of your inner critic. That voice of that internal dialogue is going to tell you you’re selfish. Like what are you doing?

Trying to even prioritize yourself. But when you can start to notice that, observe it and you get to change it, you get to change that voice. You get to learn the lesson. And you get to lean into that compassion and you can start to surround yourself with people who are like minded in that way too, which again, fosters and develops that sense of compassion.

Nice. I appreciate you explaining that. It’s, it’s a phrase I had not heard as far as self-compassion coach, but having you explain that, I think, Every, every mom, especially should be working with someone just cause I, cause, cause like you say, it’s really, it’s really hard to not put yourself in the back burner to take care of.

Cause we’re in that caregiving role. That’s, that’s, you know, it’s, it’s, it’s where we are at this stage of life. And many of us will go from caregivers for our children and our high-needs children to caregivers for our parents one day. And so there may not even be a gap in between. It may just be a change of who we’re caring for.

Yeah. Excuse me. We have others who are listening who are, um, adult siblings of someone that they’re still caring for because their parents are no longer able to care for them. So, we have a lot of listeners that are in that, that, that, that role, whether they’re a parent or not. And, um, so I think, I think that’s really important.

So, so we have self-compassion coach and you also work with acceptance and commitment therapy. So, that’s what you’re explaining with what you’re doing.

Yeah.

Am I connecting this correct?

Yeah. You’ve got it.

And then there’s breath work as part of it. All right. So, we’re, we’re, we’re, we’re getting there. When I, when I read your bio, it’s like, there’s so many pieces here. I wanted to make sure that I understood all of it. Yeah.

Well, and I think it’s because, you know, I, by trade, I’m a board-certified behavior analyst, BCBA. I worked with the autistic community, like I talked about. And then under, um, Being a BCBA, there’s this framework acceptance and commitment therapy.

And when I started learning about that, I was like, I need to do this. I need to transition because I have been the woman for most of my life. I’d say most of my adult life anyway, that did not show myself a lot of compassion or empathy, though. I am a very empathetic person. I’m very compassionate, but I was giving all of my energy to everyone else.

Before myself. So, I’m just really passionate about helping, um, people learn to prioritize themselves and not feel guilty about that, that it’s actually okay. And it helps you show up better and stronger for the people that you love.

So I’m sure in your practice, you’ve run across people that might be resistant or unfamiliar with what you’re doing. How do you help a parent understand the value? Because, because we have a lifetime. of being taught to put others first for me as, as, as a Christian, that’s, that’s where my mindset is. I want to help others, but I do find that the downside is that I don’t always take care of myself in the process and I’m learning.

It’s taken a long time to get there, but I’m learning. So, how do we kind of break that where you see that it’s not, it’s not wrong to also think of yourself. It’s not selfish whenever you think of yourself. I mean, it could be if, if you take it to an extreme, you’re not caring.

Yeah. I mean, first of all, I want to just acknowledge that it’s a lifelong journey, I think for everyone.

So whether you are working with a coach or a therapist or reading self-help books or. Professional development, like whatever it is that you’re doing, I think that’s a lifelong process and whatever chapter you’re in right now just leads you to the next chapter. So, we get to continue to learn and evolve and grow.

Um, but in terms of like, how to not feel like it’s selfish, I think that’s where acceptance and commitment therapy comes in because that’s our mind. That’s our mindset that is very fixed. That has, you know, it’s kind of fused, um, for lack of a better word, that’s a, A word in acceptance and commitment therapy is like, we’re hooked with these rules or these thoughts because our whole life we’ve been told, don’t be selfish.

Put others first. We’ve been told not to have emotion. Suck it up. Buttercup. Be a big girl. Like all of these things, right? We’ve been told our whole life, um, have really. Let us to believe that those are actually true and factual. So, when we, when we can step back and we can observe, what are the thoughts that we’re even having, which we can do through acceptance and commitment therapy, which we can do through breath work, then we get to change that narrative.

We get to kind of change that talk track, but again, just acknowledge. That these thoughts are here. So, if someone out there is listening, they’re like, well, that sounds great, Robin, but I have so many things to do. I, there’s no way I can put myself first. Maybe just observe that you’re having that thought, observe it without judgment.

Ask yourself, is it true? Is that a true thought? Maybe it is a true thought. Maybe it’s not. But if it’s, um, a true thought, is it helpful? So that’s kind of the next thing I would ask myself. Is this a helpful thought? Whether you answer those questions with a yes or no, you’re going to be able to identify like what intuitively feels right for the next step.

And, um, you know, I think going back to what I mentioned in terms of, uh, Yeah. Pairing some things. One thing that I talk about a lot with my clients is habit stacking because we’re all busy. Like if we could all have more time, that would be great. Um, but we all have this 24 hours. I don’t believe it’s created equal, especially for our listeners listening today.

Right. They have all of these. Things on their plate, however, the time duration is not going to change. So, you just get to ask yourself, what is the most important for in this next 24-hour period, taking it small, knowing that beyond that there’s some bigger issues and challenges and future me will know how to manage that.

But in this 24 hours, how can I build in some things that feel good? How can I slow down and just be aware of my breath? Well, maybe when I’m doing the dishes, I can just notice. the soap on my hands. I can notice the way that the bubbles feel. I can breathe while I’m doing that. I can notice the air. Is it cool?

Is it warm? These things that bring us back into the present moment can help eliminate some of that guilt because we’re not taking away from the future us, we are just contributing to future us by slowing down, pouring into ourselves so that we can live in the present moment because we live in the past or the future.

You mentioned, um, just feeling the water on your hands when, uh, just triggered a memory for me when my kids were young and I was trying to teach them. Well, I say I, we, because my husband and I had to do this together, trying to teach them how to self-soothe without relying on me going in there all the time.

And my daughter at the time, her nervous system was just off the charts. Um, we were doing brushing techniques and everything with her. And so it was really hard to let her go. find on our own, how to, how to calm herself. And so it go into the kitchen and I’ve shared this before and other, other interviews, I would wash dishes, you know.

We may have had a dishwasher, but it didn’t matter. Just that warm, the suds it was calming for me to have that exposure. Um, the noise of the water running would help calm what I was hearing in the other room, excuse me. And I could give it 10, 15 minutes before I went in again to kind of calm myself. And then I was more relaxed when I went in because of it all.

So, um, so maybe I was finding ways to, to, to, to, to treat myself without knowing it during that time.

I love that. Yeah. I love that. And that gave me chills just hearing you say that you did that. And it reminded me of an experience where, um, when I worked as a BCBA and I was going into these homes and I was working with the families, sometimes it was really challenging for these families to hear their children cry, right?

They, they wanted to do all of the things like, um, Let me use some bribery or give you whatever you want. Or like, how do I just make it stop versus sitting in it? And so I unbeknownst to me back then when I was, um, not, I didn’t know as much about acceptance and commitment therapy, but some of my interventions for parents were the same.

So I remember specifically asking a mom when her child ended up on the floor and some kind of aggressive types of behavior, I asked her to go to her room and brush her hair. And that was like a random thing that I just felt intuitively. Like I have to give her a task, but I also wanted her to just have something to do and honor herself at the time because she wasn’t able to sit and listen to it.

And so maybe. Maybe I was doing that too back then and didn’t know it.

Yeah, it’s, I hadn’t thought about that, but you’re, but you’re right. Cause it, cause just that stroking the, the, the repetition of it between washing the dishes, the brushing your hair is part of it, but it also is giving you that, that sensory input yourself.

Yeah. That’s, that’s a calming. Well, we’ll see. We, we, we stumbled, but, but we found something.

It all came full circle.

It did. Well, I did want to ask. I don’t know if you can do it or not, but can you, um, you mentioned some of the breathwork earlier. Can you give a short little demonstration of what, what you mean when you talk about breathwork?

You know, I can talk about it a little bit and we can talk about breath awareness, but breath work is, uh, is a whole experience and it can be an emotional or a physical and or a physical experience. So, um, there’s kind of a lot that goes into, like, an actual session. We, we. Find a playlist that feels good and supportive.

We set an intention. So, a lot of the women, a lot of the, um, I actually do have men. So, a lot of the people who are coming to me to breathe, um, you know, have intentions of like, I want to let go of what’s no longer serving me. I’m holding on to a lot of anxiety or, um, Um, yesterday I had someone who wanted to let go of the things that she couldn’t control.

So we always set an intention in this breathwork session and then have this playlist that kind of is curated to that. And then there’s some talking and some affirmations and then of course the breath itself. And so there’s various kinds of breath patterns that we could use in a breathwork session. But what I would say for the people who are listening out there, I mean, obviously if you’re driving, don’t close your eyes right now, but if you’re doing that, um, Yeah, you’re doing the washing the dishes or folding the laundry or doing these kind of mundane tasks.

I would encourage you to maybe pop some music in your ear or do it silently. Like just listen to what feels good to you, close your eyes, and just bring your awareness to your breath. And so when we do that, I’ll demo that. So, I’m going to close my eyes. I’m going to take a nice, big, deep breath in. It doesn’t even have to be, you just.

Listen to what your body wants. My body is calling for a deep breath right now. Oh, I feel so good just circulating in my body and I’m going to exhale Let it go and as I do that I’m noticing the rise of my chest the fall of my abdomen Um, I can bring my awareness to this tiny space between my nostril That we never notice But, you know, how does this air feel?

It’s cool. It’s warm. You know, when I close my eyes, I personally am someone who visualizes. So, I like to see a lot of light surrounding me and that just feels really good. It feels like I’m in connection with my energetic source and that I’m on track. Um, so that’s, that’s what I would recommend doing to anyone who’s like, well, I don’t know about breath work, but we can breathe anytime for free.

If you’re really interested in breathwork sessions, there are. A million breathwork facilitators out there. I would always recommend finding someone who is a trauma-informed breathwork facilitator so that we can teach you how to take tiny sips because we are going to regulate the nervous system. And sometimes that’s hard to do, you know, if you’ve never done breathwork before, just fully surrender.

Like that. So, we do it, you know, one step at a time, one breath, work session at a time. Um, and that is an offering that I’m offering right now too. It’s free. Hope you find me through, uh, through June of this year. It’s a complimentary service. Um, so if you’re curious. Let’s, let’s breathe together.

Cool. I like that. All right. Well, this season we’re going to kind of switch, switch gears here. So, this season I’m asking my guests to share some words of wisdom by completing different statements and listeners, if you’ve listened so far to season three, you’ve heard, heard some others do this, but, um, Robin, I’m going to start by reading out a statement that I’m going to have you repeat the statement and then finish it with your own thoughts.

Does that make sense? Yep. Okay. All right. So, the first one I have is the biggest shift I’ve seen in parents of special needs children is when they realize,

Okay, so the biggest shift I’ve seen in special needs parents is when they realize. The power of community, the power of connection, when they lean into their support network and find people, find their village who can help support them on this journey.

I like that. Okay. So, the next one for parents feeling overwhelmed, the most important thing to remember about self-care is,

Okay, so for parents feeling overwhelmed, the most important thing they need to realize about self-care is. It doesn’t have to be big. It doesn’t have to be extravagant. We can start really small.

You can start building in some self-care, some self-compassion in your day-to-day life by pausing, by noticing your feet beneath you, by taking a breath, by just breathing, and being present in the moment.

Nice. See, I thought you would say it’s not selfish. So, , you went above and beyond what I was expecting.

Yeah. It’s not selfish.

I like your answer better.

Well, and I, I like saying that self-care is not selfish and I know we hear that a lot. And so I feel like. Um, when I say it to my clients or I say it to anyone in my community, I get kind of a visceral reaction sometimes, like a little bit of a silent eye roll or something like, because it’s, “Okay. That’s cliche, but how Robin?” And so I like that. I like saying it because it’s not selfish, but I want to be able to encourage you to take the steps so you can actually start to feel the benefits of self-care. And then you learn like, oh, it’s not selfish because I’m actually showing up as a better parent. I’m showing up as a better boss. I’m showing up as a better child, a better friend, because I’m giving to myself. Right. I also think we say we can’t pour from an empty cup and I know like, okay, those are words too, but that is so true. Right. If our cup is empty, like how in the world can we give to our children?

Yeah. All right. So, you’re ready for the next one?

Yes.

All right. So, a practice that has helped me manage stress and find moments of peace is.

Okay. So, a practice that has helped me manage stress and find moments of peace is breathwork. Finding the power of the pause. Even if it’s not, um, slowing down and intentionally breathing. Can I pause and can I notice what’s coming up for me? What thoughts am I having? What am I doing with my body? How am I engaging with the world around me?

As you’re saying that, I was thinking how many times we hold our breath thinking that we’re breathing.

Right.

And I think a lot of our parents, if, if you think about it, if just having that pause in that moment, if just having listened to this and thinking about their breathing, how many times do they hold their breath and they’re not, they’re not breathing. They’re just holding on, but they’re physically holding as well. During that time. Right.

And they’re, they’re clenching their jaw, like their whole face is, um, you know, there’s a lot of tension in that. And so when you pause and you breathe, not only does it feel good in your body, you can let go of that tension.

You can notice like I’m holding so much around the crown of my head, around my cheeks, around my jaw, or perhaps in my heart, I have a lot of heaviness. So, how, when I breathe, can I relieve some of that?

Well, the whole world can look different just with one breath. It’s just like you said, if you can just let go of that tension, you might, you might be able to think clear and see that maybe looking up and seeing back to our Excuse me.

Back to our example at the shopping, you know, look up and see the grandma that actually has a pleasant look on her face and she’s not judging you just, just that much to get there. All right. So, speaking of that, the last one that I had for you is the best way for parents of special needs children to overcome feelings of isolation is to.

Okay, I’m going to try to get that right. The best way for parents of children with special needs to overcome feelings of isolation is to. Ask for and accept help.

Nice.

So it goes back to that, right? Building community.

Stop right there.

Okay. Perfect. Perfect. I love it.

I couldn’t have asked for a better answer. Excuse me. There was something I was going to say, Oh, uh, the, um, the whole time we’ve been talking about this since you first introduced what you do, I keep picturing someone laying down with, um, cucumber on their eyes.

Yeah. It’s like, I’ve always, I’ve always thought, well, self-care is not for me because that’s what I picture. Yeah. It’s just. I’m just kind of a down-to-earth person.

Well, and I like that you bring that up too, because, you know, I think maybe everyone has this definition of self-care that looks similar to that, or they think it’s the massage.

And I talked to people and they’re like, well, I don’t even like massage. And it’s like, okay, well, that’s not the self-care for you, but there’s other ways to care for your nervous system, to care for your mood. And it can be really simple. So, we let comparison culture get in the way. Social media tells us what self-care should look like.

But when you breathe and I know I’m harping on this breath thing, but it’s powerful, it’s transformed my life. Um, but when you breathe, you really tap into your intuition and you can identify like what actually feels good. And your time is so limited for those that are listening. Like your time is so. You don’t want to go get a massage for 60 minutes if you’re like, I don’t even enjoy that.

Don’t do it. Don’t do it. Don’t add that on. Spend those 60 minutes going for a walk, listening to a podcast, breathing, taking a drive. I don’t know. Whatever feels good. You deserve that.

So you have Robyn’s permission not to have to break the bank and go to a spa. You can now do this another way.

Yeah, yeah, and I, I like sharing that because I think for so long, when I, when I think about when I first started my journey towards healing, I was, um, I was very, I don’t know what the word is.

I didn’t hesitate to spend a lot of money trying to fix the problem, right? I tried to throw a lot of money at, like, something’s wrong with me. I was having a lot of anxiety, like, let me do the things that people say are going to help. Well, when I was doing that, Didn’t benefit me in any way because I hadn’t done the internal work.

I hadn’t regulated my nervous system. I hadn’t noticed my thoughts. So, it was like putting a Band-Aid on the situation and that Band-Aid eventually fell off and the problem was still there. So, I like sharing that because. You can find ways to build this in that don’t cost you a thing.

So you mentioned through June that you have, uh, a session that they can do.

Yes.

Yeah. Okay. What else do you like to tell it? Tell us what, what you offer, how they can get in touch with you, your coaching sessions, things like that, whatever, however you want to share with us. I want my listeners to hear how to get in touch with you.

Okay, absolutely. Well, I would say the 1st thing that I would love to extend an invite to anyone who is listening and feels like this resonates, or I want to be part of that community is an invitation to join myself.

Love club. This is a free community. I host it on the last Thursday of every month at 12 p.m. Pacific Standard Time. So, obviously we’ve got to take some time zone conversions into account, but if that works for you, it’s a way to join this free community with like-minded women who are, you know, experiencing the, you know, They’re experiencing self-doubt.

They’re experiencing anxiety. They’re experiencing, um, what it doesn’t like, what it feels like when they don’t take care of themselves. So, we share tips, strategies. We do a little breathwork in there. It’s just this beautiful club. You can come without any pressure, any expectations. You don’t have to speak if you just want to hear people talk.

It’s just this beautiful. So. So, I love sharing that I want to get that to be a bigger community. So, anyone and everyone is welcome to that. If that interests you, you can find me on Instagram @coachrobyn_. That’s R O B Y N underscore. So, @coachrobyn_, um, you’ll see, it says I am a coach, a mindset and self-compassion coach.

And, um, from there, these breathwork sessions are available too. I offer 30-minute, 60-minute, and group sessions. Breathwork session experiences, and you can sign up for the, there’s a link in my bio. You can sign up for free for those breathwork sessions through June of this year. Um, in June, I graduate.

And so I’ll be transitioning what those services look like and what those offerings will be some more to come then. And then, um, the other thing that I’m really proud of is my signature program. So, this is a three-month, 12-week one-to-one session. Um, so if you’re looking for coaching with a self-compassion mindset coach, a woman who has experienced anxiety and some forms of depression, I’ve gone through a divorce.

I’ve gone through some difficult things and I’ve gotten back on the street. Um, if that resonates with you and you feel like I’d like to work with you, or at least have a conversation around what self-compassion can do for me, um, then my signature package, I, I have a program called nurture her and, um, that’s also an offering that we can chat about on Instagram.

I have a website, uh, Reflect and Refine is the name of my company. So, https://reflectandrefine.Net. So, you can find me. Um, you can say the word like “compassion” or “Water Prairie”, and we can continue the conversation offline.

Excellent. Excellent. Well, I hope that, that our listeners will, will check out what you’re doing on Instagram.

Um, I love the, the intro idea of just kind of touching base with your monthly, uh, uh, um, group just to, to kind of get a, get a touch of what you’re doing there and then ease in from there. The, um, I think it’s always nice whenever we can kind of check out with, with a, a low commitment level and kind of ease in, especially the parents that we’re talking about.

Cause as we say, their time is so limited, but, um, but that’ll give them a good, a good taste of what you have to offer. And then they could. Yeah. Follow up with your coaching time as well.

Absolutely. Super important that they find a good match for them. And so testing it out is a great way to go about that.

Well, thank you for sharing this with us. I’ve, I’ve learned a lot from it. Um, I’ve really enjoyed chatting with you and you’ve joined our expert panel as well. Is that correct? I believe I have you on my list for that.

Yeah, I have. I, um, we’ll need to chat about that. I’m excited.

So, listeners, you may, you may see and hear from Robyn more over the next season.

So, we, um, but I encourage you if you have specific questions about what we’ve talked about to send those to us and we will get the answer to you. So, if you, neat connection. Um, connect with Robyn directly. You can send an email to Water Prairie at info@waterprairie.Com and we’ll get that back to her as well.

Um, we want to make sure that you’re getting what you need as a parent and that we can support you as, as well as we can. So, um, so anyway, so, so Robyn, thank, thank you so much for, for being here today. And I’m looking forward to chatting with you more in the future too.

Absolutely. Thank you so much for having me. It’s been a, been a pleasure and an honor.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

*Autism Sibling Love: This story will CHANGE your perspective.*Show Notes:Ever wonder what it’s like to have an autism sibling?This heartwarming interview with Sarah Boss dives deep into her experience growing up alongside her brother on the autism spectrum. Sarah offers a unique perspective on the challenges and beautiful moments of being an autism sibling.

This video is a must-watch for anyone seeking to understand autism spectrum disorder (ASD) from the perspective of an autism sibling. Learn valuable insights on:

Living with Autism in the 1980s: Gain historical context on navigating an autism diagnosis before widespread awareness.
Building Empathy and Connection: Discover ways to foster strong bonds with autistic loved ones.
The Power of Acceptance: Explore the importance of celebrating neurodiversity within families.
Sarah also sheds light on ALAW (Autism Living and Working), an organization co-founded by her parents to provide support for autistic adults.

This video is packed with resources and inspiration for parents, families, and anyone interested in autism spectrum disorder.

Connect with Sarah:

Website: https://www.sarahsoulboss.com/
IG: @sarahsoulboss

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Sarah Boss is a certified Astrology Coach and Holistic Healer. She combines Astrology with different Holistic Healing modalities to help people successfully navigate major life transitions, empower themselves and manifest the life of their dreams. Sarah has lived in China, France and Argentina and offers sessions in English, French and Spanish. You can learn more about Sarah at her website https://www.sarahsoulboss.com/.

Episode #93: Empathy & Strength: Growing Up with a Sibling on the Spectrum***Autism Sibling Love: This story will CHANGE your perspective.***###### (Recorded March 28, 2024)

Full Transcript of Interview:

Tonya: Well, Sarah, welcome to Water Prairie.

Sarah: Thank you so much for having me. I’m so excited to be here.

Oh, thank you. I appreciate you reaching out. Um, the topic that we’re gonna be talking about is one that I haven’t brought before. I’ve talked to other siblings who have had a sibling with different disabilities, but we haven’t addressed this with autism before.

And so I was really excited whenever you, you offered this as a possible topic we could talk about. So in our earlier communication, You mentioned empathy, compassion, and belonging that your brother instilled in you. Can you share a specific story or a memory that demonstrates this?

Yeah, absolutely. So there’s one memory in particular that sticks out. I was around 10 years old, which would have made my brother 14. And we went on the bus together. And my brother, when he would, Michael, that was his name, uh, when he would go into the bus, so he had rituals. So he couldn’t, for example, sit down once, but he had, he would go up and down, up and down, up and down.

And then there were always a lot of facial expressed expressions, grimaces, you know, sometimes that would happen, you know, clicking that, that sort of thing with And so we went, we were in the bus and, uh, we got into the bus and he was, he was doing a ritual of one of his rituals. And every, there were a number of people, you know, um, who actually moved away.

And I remember being so struck at that age and, you know, especially when, when you’re 10 and you’re kind of, you know, learning about the world around you, that why would People be moving away when, you know, from somebody from essentially, you know, there are, they were moving away from something that they didn’t understand.

So there’s the fear of the unknown, right. Of the thing that you don’t get, but he wasn’t somebody who was harmful, who was, you know, who was looking to, to inflict, you know, harm to anybody in any way. So this really instilled in me this, uh, sense of empathy and that was Uh, honestly, one of the most beautiful gifts that my brother has given to me that, you know, just because somebody maybe looks different from you at the end of the day, we’re all connected, you know?

Um, and so it, it doesn’t mean that there’s not something beautiful inside and you really shouldn’t judge based upon what you see on the outside. And it wa s painful for me as well to see that and t were moving away, you know from because it’s it’s this feeling right of rejection essentially. And I felt that myself. Not just For him, but I also felt that myself as the sibling, like they’re rejecting both of us because I’m part of this, you know, and that was something that I’ve actually has been a big theme in my life in terms of understanding.

Belonging and finding belonging and just being accepting towards everybody, regardless of ethnicity, regardless, you know, of, of whatever is, is on the outside and because it’s really what’s on the inside, that’s the most important thing.

I think you hit on something that’s really accurate that people may not have thought of before.

Um, and I’ve, I’ve thought of this recently myself. A lot, a lot of our aversions to people or fears, even as you say, is that it’s just not even a lack of education, but just a lack of exposure and a lack of experience, and as time is going by and we’re having more awareness of disabilities and of just differences between each other, I think, you know, it can only help us to recognize that, you know.

You and I don’t, don’t, don’t look the same. We don’t talk with the same accent. We don’t, you know, our hair is very different. You know, it doesn’t mean that we can’t connect with each other, but I think a lot of those, um, almost like a hatred level that comes in, I think it’s a response to fear and not knowing because it’s something that we’re totally uncomfortable with, and we’re not sure what to do. And I say, we just general people in general, we, we, we all have something that we have a hard time connecting with and we respond differently. Some people run right toward it because they want to know more. They were, they’re curious. They want to understand more. I love, I love traveling around the world and meeting new cultures, but I don’t want to just visit for a day.

I want to stay for a week, for a month, because I want to learn why, why we behave differently. Because it’s the same mindset. We just respond differently. Because of our cultural background or experiences, but we don’t necessarily do that when we meet someone who may be in a wheelchair or, you know, instead, we just kind of walk on by and we don’t take that time to stop.

And it’s part of what I’m hoping to do with the podcast is that as we’re exposing people to, to new individuals and new situations that they haven’t personally had a chance to interact with. Hopefully, they’re opening their mind a little bit more. And decreasing those fears and those concerns there. Um, I hate that you and your brother faced that, but I know a lot of our listeners have been in similar situations.

I meet parents all the time who won’t leave their home to go out in public because they just get tired of those stairs or those very inappropriate comments that are made and not everyone has the strength within to say, you know, come, come on, come on over and, and, and ask us any questions. Well, you know, I, I have met some who can do that and they, they would rather you come and just.

Ask questions, even if they seem rude, just because it’s going to help you understand more, but that’s an invasion of your space too. So you don’t always have that. Well, your family, what you, what you’ve told me about, about what your family has done in response to your brother. So he was four years older than you were.

Before I get into my next question, I wanted to ask you, When was he diagnosed? Was he a young child or was he older? Cause I’m thinking.

No, very young. Uh, he was, uh, probably around four years old. The story that my parents told me was, it was about that age where you normally take the kids, you know, to preschool and then you, you drop them off.

And what happened was they took him and they tried to drop him off because they didn’t know at that point he seemed, you know, everything seemed totally kind of status quo. And he cried and cried and cried and cried. And eventually the teacher called and said, you have to come back and get him. And that’s when they knew that something was, was off.

And so, yeah. Was shortly after that that he was diagnosed, yeah. About what year would that have been? Have, let me think. Um, he would’ve been 47, so if he was around four, that would’ve been, uh, 43 years ago. So that would’ve been in?

Yeah. So it’s 24 right now, so 80.

Yeah. Yeah. Yeah. Around 1980’s. Yeah. Yeah. Exactly. Yeah.

The reason I’m asking is autism was not readily diagnosed until later into the eighties. So he was, he and your family were fortunate that they had a doctor who knew what they were looking at. And we’re able to help identify what was going on, just the more people that I’ve talked to, that was kind of a gray area of time where there were a lot of questions still.

And we really didn’t know a lot. And so much has developed since then. But, um, but that’s, that’s when, when, when you had mentioned earlier about his age, it, it made me wonder, you know, he was one of the ones who was able to get that diagnosis earlier.

Yeah, I’m sure it didn’t happen right away. I’m sure that they probably went to a few.

I mean, I would go back and check with my mom, but I’m sure it wasn’t an immediate thing that they probably had to go and see a couple of, you know, doctors before they finally got the diagnosis. That’s probably it.

When I’ve talked to other adults who have been diagnosed as adults because of the same of that gap in time where they really didn’t didn’t understand what it was and it wasn’t recognized, but they later were able to get a diagnosis.

So, they went years and years without a name. That was, that was the only difference. The adjustment time that they needed, they were getting their needs met. It was just this unknown out there. They really didn’t know, or it was a misdiagnosis. It was called something else. But as we learn more as a population, they kind of were able to get a better label as far as what it was.

And not everyone needs a label. Um, I know for my family with my daughter, when she was, she was little, she’s, she’s visually impaired. I just needed a name because that helped. As we talked about people responding funny. As, as the wall meeting grandmas who would come by in the grocery store and go into comment about my child, and then would back up and ask what was going on with their eyes.

It was a lot easier to have a name of something just to say, well, she, she has albinism and then they may not have known what that was, but at least it gave me something easy to say, and not to have to explain everything. So, I think sometimes it does help to have to have a label as much as we don’t like to label each other.

It does help to give even our kids a tool to be able to say. You know, this is, this is why I need some extra help, or this is why I need to wear my headphones. Um, and everyone’s gonna be different on that. So parents that are listening, I’m not telling you to tell your child that they have a label. That’s not, not what I’m saying at all.

But as a parent, sometimes it does help you to kind of know as you’re looking for support organizations and all to know where you’re looking and where you’re getting help. Well, so given the time period that you were in, your parents had did, did, well, I would say they didn’t have, they, they didn’t have as many supports as are out there today. And so you shared with me, and I don’t know if you say it as A Law or ALAW. But tell me what that is and how did it get started?

Yeah. So ALAW stands for Autism Living and Working. And so what happened with my brother, his journey is that when he got to be a teenager, he could no longer live at home. He became violent and it was not, uh, and my, my parents didn’t honestly know how to navigate the situation. They tried different resources. I remember at one point we all went to children’s hospital, saw a therapist. It wasn’t, but you know, it’s, it’s not. It’s not your, your atypical behavior because you know, he, he has autism.

And so there was medications as well, putting them on medications, changing the medications. This was a whole long, you know, process. And so what they did at one point was they found a school and they sent him to the school. It was called Devereaux. And he was there until around, I would say from maybe age 15 to 24.

He was very, very young. Very unhappy at the school because it was, you know, kids who had all sorts of different developmental disabilities. It wasn’t just autism. I don’t really feel like they necessarily knew the best way to support him, but he was quite vocal about how unhappy that, you know, he was, and it just, it wasn’t an option for him to live with my parents anymore.

So what happened was what was founded a law. They, my parents met. Two other parents of, uh, autistic who had autistic boys. One of the parents actually has a, uh, both a son and a daughter with autism. And so they came together with the parents to ask for funding from the government and with that funding, they created a law autism living and working, which was this organization to support these, these men, they got a house in Phoenixville.

So, which is about 45 minutes outside of Philadelphia. My parents were living in Philadelphia and then they also had, uh, staff that were there 24 seven. So the staff to cook for them, to help them with things like brushing their teeth. Um, one of the, one of the, the men did not have speech. My brother was quite talkative.

I mean, he would talk your ear off, you know, um, about the same things typically, but he, he would talk. And so he really needed, uh, one, the one, uh, the man who did not talk, um, Matthew, he would, he would type like when he wanted to say something, he would type it on his, um, on his, uh, you know, his computer. But so they had staff there to basically To, to help them and then also to do activities with them to help them to integrate as well into society.

You know, like Meals on Wheels or, uh, my brother was working, uh, a few days a week. I forget what he, maybe it was CVS. There were a couple of different places where he did simple things. You know, if it was like stacking boxes, washing dishes with. I think it’s something that he did at one point, but you know something to get them.

So they’re not, they’re not in the house 24 seven, um, there was one staff member that would take him to plan a fitness a couple of times a week so that he would, you know, make sure that he got exercise. So that kind of support, so that was all, and that was all funded from the, by the government. That wasn’t an issue at one point where Republicans took charge of, uh, uh, you know, because they wanted to cut the funding and so they had to go, my parents actually had to go to court, you know, in order to petition to get a lawyer.

Lifelong funding, because that’s the other thing. Once the parents have passed, you want to make sure that your kids are supported right through, through all of that. So, so that’s what that ended up being.

Wow. Yeah. We’ve talked, um, last season we had, Amit Chawla on to talk about. Just that lifetime planning for the future.

And I have someone coming on this season, late at the season that we’ll be talking about as well. Um, very important because that is a big concern that most of our parents have. What happens after I’m not here anymore? How, how can I make sure that my child’s ready and able to be cared for? So I’m glad you mentioned that.

Excuse me. So you mentioned some of the things that they’re doing with a law. I really like that idea. And you had told me before about Meals on Wheels. So what is why is it important for them to be out in society? You mentioned a little bit of that, but what are the benefits that it brings? And is it just for the guys themselves, or is it for others as well?

It’s for, I think it’s just as equally important for other people, maybe even more so because, uh, you know, there’s so many times when I would, as a sibling of somebody who had a disability, when I would try to explain to them, okay, my brother has a developmental disability.

People wouldn’t understand. Even when I would say, okay, he has autism. They really wouldn’t get it. And they didn’t get it until they met him. And they had a lot of times these preconceived notions and, you know, autism, there’s a huge spectrum. I used to be a teacher, French and Spanish, you know, high school teacher in middle school.

And I had some kids who were on the spectrum, very high functioning, you know, but we’re talking Asperger’s what my brother, my brother, very, you know, obviously different, But with him, when people met him, they interacted with him. Then they understood. And I feel that that’s really important. First of all, in terms of promoting tolerance, in terms of promoting connection, acceptance, empathy, and people need to understand that different is not bad.

I mean, because these men were super gifted all in their own way. I mean, my brother had this. Passion for trains. He remembered every single train and he went to Paris when he was maybe six years old and he remembered every single station. And when I would go to Paris, he would say, make sure you ride this line and make sure you do this station in the station, you know, like a huge, very, very, very keen memory.

So I feel like it’s, yes, it’s important for them also not to be completely isolated. Everybody as humans, we need connection. Everybody, it’s, it’s, it’s a, it’s an innate need. So I feel that it’s really, really important for, uh, you know, for, for people who have developmental disabilities, yes, to be integrated into society and for us to see that different is beautiful too.

And, you know, cause there again, as we had said before, there’s this perception of the other and the other is something that we fear. We fear what we don’t know. No, let’s move towards connection instead. And embracing, you know, in the spirit, more of, of love, the thing that we don’t understand, you know, I think that’s super important because as we do this also as humans, even this most basic thing of, of, you know, connecting with somebody, for example, you know, who has a developmental disability and actually going and, and having, having a conversation with him.

There was a man who used to come and, uh, he would with Michael, like he would come visit once a month, he would take him out on walks and he would, his name was Henrik Just talk to him and interact with him, and that creates a ripple effect in our world. It creates a ripple effect of healing, of tolerance.

You know, I know it seems like a small thing, but those little actions really do, uh, they reverberate in, in terms of the, the collective society. So it’s, it’s very important.

Yeah, no, I completely agree on that. So as our parents that are listening, the rate of autistic diagnosis is, is much higher now than it was when your brother was diagnosed.

So a lot of our listeners may have a child who’s on the spectrum. What would you, what would you tell them as far as, um, how to find the right resources for their children? A lot of them aren’t sure where to get started. And now your family went out and created this from what, you know, from what you’ve seen, how would you advise them on getting started with trying to get that support?

I think the most important part, the first piece is the community connection. So making sure that you yourself as a parent have the support that you need.

So I would say connecting first and foremost to other parents or siblings or people who have, you know, who have family members with a developmental disability and see, okay, what was your journey? How did you handle it? You know, it’s very, I think that never underestimate the the power of word of mouth.

And so I really feel that, you know, when you, when you have a need and you put that out into the universe, the universe will bring you support. And I think it’s also very empowering to just see other people who have been through that, who have been through the experience. So you know that you’re not alone, you know, so you know that there, and so that you too, it’s so important that the parents have support.

For themselves as they go through this journey, not just because you’re in this caregiver role, right? You, you just are. That’s naturally in the caregiver role. It’s beautiful, but it also can be very, very draining. And so you need to make sure that you have yourself care and you have all those practices in place to make sure that your cup is being filled.

Cause if it’s not being filled, it’s going to be hard for you to, to fully, you know, give as well to your child. So that would be my first and foremost, just, Uh, would be my piece of advice is to really tune into your own network and talk, you know, communicate, talk to the people who have had, um, who have had family members with these, with disabilities and see what their journey was like, see what their recommendations are.

So last week we were talking about, um, neurodivergent children and using music therapy and listeners. If you were listening to that one, we told you to let us know if you’re having trouble finding resources. I want to repeat that again for this one. If you’re out there feeling isolated and you don’t know where to start.

Leave a comment on this or send us an email, let us know. And we’ll, we’ll get you connected where we have connections. And I think it’s, it’s so important that you have those connections with, with other parents. Um, not always with specialists. Sometimes you just need to talk to another mom or another dad and to just share those, those like experiences that you’ve had.

And as we said earlier, The spectrum is such a broad range. No two children are going to be the same, but that doesn’t really matter because you’re looking for a parent who you can connect with. And, um, and so, so that self care part and making sure that you’re taking care of yourself is very important. So thanks. Thanks for emphasizing that.

And I would also say don’t underestimate the power of self. Of, uh, social media for connection because nowadays, you know, social media, you go, for example, on Facebook, there are groups, there are community groups you can find, you know, support in terms of, okay, there is a Facebook group. I’m sure for parents who, you know, children with autism, you can, you can find that.

There are quite a few. Yes.

Yeah.

And, um, and I’m glad to help you find that if you, if you don’t know how to do it. Just let us know. We will, we will get you connected. We’re, we’re collecting as many resources as we can to try to help you as a parent be, be stronger and be able to, um, to find the path that you and your child need.

So, this, this season, we’ve been, um, working as part of the interview with having each of my guests. Complete a statement that has something to do with what we’ve talked about. So I, um, and I’m, I’m having a hard time explaining that with, with each of these interviews. So maybe by six months into this year, I’ll, I’ll, I’ll get this down.

But, but listeners, you’re, you’re starting to hear a little bit more on this. Um, and some of these statements will be used, um, to help promote the episode, but, um, but I’ve asked Sarah to answer three for me. So I’m going to, Say the statement that I’m going to have, Sarah, I’m going to have you repeat it and then finish the statement for me.

All right. So the first one is having a sibling with autism has shown me that the most important thing is

having a sibling of autism has shown me that the most important thing is empathy and connection.

Right. So the second one for families navigating a loved one’s autism diagnosis, the best advice I can offer is to.

Hmm. Uh, the best advice that I can offer is to seek support in particular from other and connect with other parents who have been on a similar journey.

All right. The final one, when it comes to individuals with autism, it’s important to remember that

it’s important to remember that each individual has their own beautiful magic inside just waiting to be discovered and their own gifts to share with the world.

So get curious about that.

We’ve been talking about your experiences with your brother, but you have a whole life apart from that. So tell me about any projects you’re working on, um, how our listeners can connect with you.

Oh, thank you. Yeah. Well, I, um, am a, a, an astrologer and a life coach and also a holistic healer.

So I combine astrology with life coaching to help people who are navigating. Major life transitions to find self empowerment and create the life of their dreams. And so I was living in China. I’m now in Philadelphia for for now. Uh, and so, yes, if there’s anybody who is seeking support when it comes to navigating a big life transition would love to connect.

I’m on. All the social media I do a lot of videos on instagram in particular which talk about what’s happening in the cosmos Energetically how you can work. We just had this big lunar eclipse that happened in libra. So, you know how to work with the energy Also videos on navigating big transitions in your life On finding peace, you know, in the moment, also when it comes to transitions, the things that you, you can’t change, you know, so finding peace and surrendering to, uh, to, to change and finding gratitude in the moment.

So you can connect with me on social media. My social media handle is Sarah S A R A H S O U L boss. My website is https://sarahsoulboss.com and I have a newsletter, which I publish twice a month with more tips for ways to really connect with and align your energy. So please reach out. I would love to connect.

We’ll put the links to, to, to all of that and the show notes too. So if you’re listening on the audio, you may have to go to the website link to get to that. I’m having a hard time getting the show notes to show up on Apple podcasts, but, but there is a link to the webpage everywhere else. It’ll be linked at the bottom with the video or on the webpage itself.

So, Sarah, thanks. Thanks for sharing today. I appreciate you bringing a different perspective here, but, um, but I appreciate you being open and just sharing to the creativity that your parents went to, to help support your brother and to give him a full life and not just to be sitting on the sidelines. So it’s really exciting to know, even being early stages.

With working with adults with autism that they had the forethought to be able to do this and to give him that and to, I’m sure it’s impacted what’s happening today with other families. So thank you for sharing that.

Yeah, thank you so much for having me. And also just for giving me the opportunity to share a little bit about Michael’s story.

I feel that, you know, in his memory, it’s a, it’s a beautiful thing and hopefully it can help others.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

*Forget tantrums! Discover the Music Therapy Hacks Parents of Neurodivergent Kids NEED to Know!*Show Notes:Struggling with your neurodivergent child? Board-certified music therapist Samantha Foote joins Water Prairie Chronicles to show how music & positive discipline create harmony! Learn 5 musical coping skills & how music therapy complements other therapies. Discover how to unlock your child’s potential & create a joyful parenting journey!

Connect with Samantha:

Website: www.boisemusictherapycompany.com
IG: @boisemusictherapy @everybrainisdifferent
Facebook: www.facebook.com/boisemusictherapy
Pinterest: Boise Music Therapy Company
TikTok: @everybrainisdifferent
LinkedIn: Samantha Kesler Foote
YouTube: Samantha Foote, Board Certified Music Therapist

Links mentioned by Samantha during the interview:

MadLibs: https://projectplaytn.wpenginepowered.com/wp-content/uploads/2022/10/Ghostbusters-Mad-Lib-1.pdf
Parent Coaching: Launching in September 2024! https://www.boisemusictherapycompany.com/parenting

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Feeling overwhelmed by the challenges of raising a neurodivergent child? This episode is here to bring harmony to the chaos!Join Tonya Wollum as she chats with Samantha Foote, a board-certified music therapist, Positive Discipline Parent Educator, and registered Music Together teacher. Samantha has a unique approach that blends the power of music with positive discipline strategies, creating a supportive and effective toolbox for parents.

In this interview, you’ll discover:

How to use music therapy techniques to address common challenges faced by parents of neurodivergent children.
Five musical coping skills you can incorporate into your daily routine (no prior musical experience needed!).
How music therapy can complement other therapies your child might be receiving.
Strategies for adapting music therapy to your child’s specific needs and preferences.

Tune in and learn how to unlock your child’s potential and create a more harmonious and joyful parenting experience!

Samantha is a board-certified music therapist, a Positive Discipline Parent Educator, and a registered Music Together teacher. She obtained a Bachelor of Science degree from Utah State University and completed her Masters of Music with a specialization in Music Therapy degree from Colorado State University. She is a Neurological Music Therapy Fellow and a Dialectical Behavior Therapy-informed Music Therapist.

Episode #92: Music Therapy & Positive Discipline Strategies for Neurodivergent Success***Forget tantrums! Discover the Music Therapy Hacks Parents of Neurodivergent Kids NEED to Know!***###### (Recorded March 27, 2024)

Full Transcript of Interview:

Tonya: Well, Samantha, welcome to Water Prairie.

Samantha: Thank you. Thank you for having me. I’m super excited.

Well, this is, I I’ve featured a music teacher before, and we talked about some of the, um, the changes that he makes to help address the needs of some of the students, but that’s the only time that we’ve been able to talk about music before.

So I’ve really been excited about this. I appreciated you contacting me and letting me know what you’re doing. Um, you wear many hats. You’re a music therapist, you’re a positive discipline educator, and you’re a parent of not just one child that’s neurodiverse. So you understand a lot of what we’re going to be talking about today.

How did you find music therapy intersected with your own parenting journey, especially for neurodivergent children?

I became a music therapist in 2011, and then I became a mom in 2015. So I was working with the neurodivergent population before I became a mom. And everyone said, you are going to have kids that are neurodivergent because You’re you work so well with the neurodivergent population.

And I said, that is not how that works, but it turns out when you’re neurodivergent yourself and you marry a neurodivergent man, you have neurodivergent children. So that’s how that worked out. But, um, yeah, just, I think it really prepared me to be a mom and understand my kids and just know how to help them and know, you know, their sensory issues there and how to recognize it.

Because when my oldest was diagnosed, everyone was like, Oh, he doesn’t have autism. He’s fine. And, but due to my work. I understood. I saw the sensory signs. I saw the social skills signs. He wasn’t communicating like a typical toddler did. And so I was able to help him and I was able to get him diagnosed.

Excellent. So you, you understand what I’m about to say. A lot of our listeners will, but those who are listening to support, I just kind of wanted to clarify some of the thoughts here for this next question. Parents of neurodivergent children. And I’m one of those, they face a lot of challenges. Sometimes they’ll face meltdowns.

Sometimes transitions can be a huge block in what. What can happen? I know for us, a lot of times it was just, you know, where are the shoes? Where are the socks? And then the stress level so high that we can’t even go wherever we’re going. Um, other times it’s just a frustration issue, but it’s, um, these challenges really build up with them.

Can you share some specific example of how you’ve used music therapy techniques that are informed by positive discipline to address some of those challenges?

Yeah. So for example, understanding your emotions, like having. A meltdown because they don’t understand what they’re feeling. We use music to teach them how to understand their emotions, how to process their emotions, and then how to use coping skills appropriately.

So for example, I might teach about anger and I use a Diane Alber books, the spot books, the emotion spot books for the younger kids. And we read the book about anger. And then we write a song about anger. And we write the lyrics and. We talk about like, what does anger feel like? What does it taste like?

What does it sound like? And we go through all the different senses, the five senses, not all the different senses we have, but we go through the five main senses because I’ve noticed, well, not I’ve noticed in research and just knowing neurodivergent kids, um, They have a really hard time with flexible thinking.

And so we’re expanding the flexible thinking by saying, what does anger sound like? What does it taste like? And they, they say, well, anger doesn’t taste like anything. I say, if you, if you had to imagine the anger tasted like something, what would it taste like? So we’re really trying to expand the flexible thinking within that.

And then we say, We write four different ways that when you feel anger, what can you do? And then I feel anger when, you know, they fill in the blank. So I feel anger when my brother takes my toy, I feel anger when my mom tells me no, and so we really get specific situations where they feel that anger. And then we have specific things that they can do, you know, they can listen to music, they can go play the piano, they can scream into a pillow, they can, you know, just positive coping skills.

And then, so that’s how we teach them to understand their emotions and identify their emotions. And then how to use the coping skill, we teach that when they’re feeling calm. So that when they’re in the anger moment, it’s just a natural thing that they can do rather than their mom or dad trying to be like, okay, now we’re going to do this and you’ve never done it before, but we’re going to do this now.

So that’s one of the ways that we use music therapy to help with emotions. You know, meltdowns and stuff.

And I could see how that, that would be a definite benefit. We, we always had music in our home and a lot of times it would be a silly way of helping to diffuse situations where there was one day I remember we actually, the two kids and I, we just sang opera to each other for about an hour.

Because, and everything that we felt we put into those falsetto voices, but it helped to, to allow us just to have fun by, by the end of it all. And it did relieve stress for me as a mom as well.

Yeah. I remember, um, just speaking about funny things. My. My. My. Sisters are a lot younger than me. They’re all in their early twenties, like late teens, early twenties.

I’m in my like mid thirties, you know, late thirties. And I was at my parents house. My sisters were being completely ridiculous and my mom was just done. And so she’s like, she turned on some Bon Jovi and just started dancing. And my sisters looked at her and they were like, what are you doing? And then they just started dancing too.

And we just had a dance party when before that everyone was arguing. And I just thought that was genius of my mom to do. She was just like, I’m done with this. And we are, and it relieved her stress. It relieved everyone else’s stress. And then they were able to talk about what, what the actual problem was after they had all just deescalated a little bit.

Right. And I think there’s so much value in that because it gets your whole body into it. It’s, um.

Yeah.

So one thing I did want to ask, I know when my kids were little, I would love to have had formal music therapy. I didn’t know it was even a thing. Maybe it was, maybe it wasn’t. I don’t know. But I’ve talked to so many parents are down syndrome community, artistic community.

It’s, it’s there. It’s an option now. So I don’t know if it’s new or not, but it’s there. But I know a lot of our parents that are listening, they may feel overwhelmed by the types of therapies that they have, because there’s so much, they have OT, they have PT, they have speech, there’s just so much going on.

There’s very little time for the family already. How can music therapy be incorporated into a child’s existing routine alongside all those other therapies?

I really like music therapy because it can pull from those different things. Like, I work a lot with occupational therapists and speech therapists.

I’ve co treated with them. So we use music therapy at the same time that they’re getting the speech therapy, or the same time they’re getting the occupational therapy. And music affects more of the brain than any other stimulus, and so it can really help. Build new neural pathways in your brain that you’re trying to build.

And so that’s what I think the biggest positive about music therapy is, is that it’s motivating and it can change your brain faster than other things can. And so I completely understand that, you know, parents and kids are busy. They have so many different therapy appointments, like my own kids. I feel like I’m constantly taking them to therapy appointments.

So if you can get a music therapist that works with your other therapies, I think that would be the best, obviously not working on the exact same goals because that’s not appropriate, but just being informed about the other goals and like helping with them. And I know I’ve worked with occupational therapists who say, you know, when you’re doing your music therapy session, if you could incorporate this to work on.

And strengthen what they’re learning in occupational therapy, you know, or. You know, these are the sounds that we’re working on speech therapy. Can you incorporate them into music therapy? And, and sometimes kids need a break from those other therapies and they can get music therapy in the middle of that, or just as like a fun therapy that I am not saying the music therapy takes the place of those other therapies, but sometimes kids get, you know, sometimes kids get burned out on music therapy and they need a break from music therapy.

So, um, I think it can just help. With those other therapies in conjunction with those therapies to build better results.

So our kids that are in public schools and listeners, I’m, I’m focusing as always on the U S school system, just because that’s where the majority of what we’re addressing is from a lot of times they’re getting their.

There are other therapies while they’re in school is music therapy and option would would have music therapists push into the school and be incorporated into part of the IEP team. How would a parent orchestrate all of that?

Yeah. In some states, there are music therapists in schools. Um, you, the parents just have to push for it by law.

The school has to do a music therapy evaluation if that’s what the parent wants, but the parents have to really push for it. I know in Idaho, there’s not music therapists in the schools because no parent has really pushed for it. But in other States, you know, there’s full time music therapists in the schools.

So it just depends on the state you’re in, you know, if other parents have paved the way for you. Um, but definitely if you want music therapy. They have to give you at least an evaluation.

Okay. So they would, so they would bring that to their IEP team.

Yes.

Okay.

Yeah.

Um, and I would think too, that they may be able to get some support from the OT or the PT that they’re already working with.

If they can find someone who is familiar with music therapy.

Yeah. Yeah, for sure.

So, um, So music, we’ve talked about how it can be motivating. It can be calming. It can help relieve some of the stress. Like the example of you and your sisters, well, your mom and your sisters, I guess you were just coming into it.

Yeah.

But not all parents feel like they’re musical or feel comfortable with that. Can you elaborate on the five musical coping skills that you focus on and how parents can use them at home?

Yeah. So the first one we’ve already talked about, it’s identifying and teaching. Emotions and parents can just do that by, you know, like we said, reading the book, writing the songs, and you can use garage band to write songs.

It’s a really easy way to write songs. It comes free on all Apple products. And so if you have an Apple product, whether it’s, you know, the computer. Or an iPad or a phone, whatever you have, it is on there. And it’s a really simple way for kids and adults to be able to just write songs together. And that’s what I found kids can really get into the music because it’s accessible to them.

They don’t have to play an instrument. They can just type on, you know, uh, Screen. So we can do that. And then the next one is regulating emotions through music. So I recommend making a playlist of anger songs, a playlist of sad songs, a playlist of happy songs. And there’s this thing called the ISO principle, where you start in, like, if you’re angry, You want to listen to angry music and then slowly go to the next emotion that you want to feel.

So if you want to feel calm, you don’t start out using calm music. You have to really feel the emotion, work through the emotion, and then you can go to calm music. So I really recommend making those playlists in advance. So when you’re angry, you can turn on the angry playlist, and then you can go to your calm playlist.

Once you, you like. You know, work through those emotions.

Right.

Yeah. And then the next one is my favorite. It’s just creating personal retreats through music. And this can be done by playing an instrument. And you, when I say play an instrument, you don’t have to know how to play the piano to do this on a piano.

And like, I’m just like using one finger. And if you’ve never improvised on a piano, I just recommend that you do, you start with one finger and just, you know, um, play the keys. With your one finger, and then you can use two fingers, one on each hand. And then you can move to, maybe you just put your hand on the piano and you just play the notes that your hand can reach without moving your hand.

And if you want to play with another person, I recommend playing on the black keys of a piano. No matter what you play, it’s going to sound good together. It just creates a certain scale that sounds good together. And you don’t have to be a musician to do that. You can just play whatever you want and you can play it together.

And that’s really co regulating with your child. So, you know, you’re calm, you’re helping them be calm. And it’s just a fun thing that you can do together. There are so many benefits of making music together. Like it reduces cortisol, it increases dopamine, it increases the bonding chemical. Um, yeah. So it can just, you can really create a good bond that way.

And. Help them regulate themselves. Um, some other things that we’ve talked about, you know, listening to music, dance parties, songwriting, you can get, um, templates online that have songs that are popular. Like I like to use imagine dragons. Um, and they have just, it’s kind of like Mad Libs. I don’t know if you’ve ever played Mad Libs, you know, like where you just fill in a blank word.

Yeah. So you can do that and you can make it fun where the person doesn’t know what the song’s about. And you’re just like, okay, give me an adjective. Give me a noun. Give me whatever. Or you can do it seriously and be like, okay, this is the, you know, this is the lyric, here’s the missing word. What word are we going to put in that place?

And then you can sing the song because you know the melody already. It’s a popular song and you just put in your own lyrics. So that’s something that you can do too. You don’t have to be a musician to be able to do that.

Is that something that we can link for parents to find?

Yeah, for sure. Um, I, I’ll give you some examples.

I’ll send you some examples of ones that I’ve used.

Okay, great. Great.

And, um, so there’s two other ones. The next one is facilitating communication. So if you have a drum, if your child is very angry, I recommend Drumming and drum talk where your child gets a drum and you get a drum and you just play with each other and They go back and forth.

So you’re having a conversation, but you’re not allowed to use your words. You have to use the drum I did this with some siblings who came into my office. They were so mad at each other They were just yelling at each other and just not being appropriate. They’re being very rude to each other I So I gave one of them, I gave them both a drum.

They sat in different corners and I said, you just have to communicate through your drums, pretend you’re having a conversation. And it was very aggressive to begin with. They were interrupting each other. They were not taking turns. And then towards the end, it got calmer. They were waiting to listen to the other person.

I told them, you know, when you’re done drumming, just stop. And then we’ll go from there. When they were done drumming, they were actually able to have a conversation together and we were able to talk about what the problem was. So that’s another thing that you can do. Um, and the last one we’ve talked about transitioning and music can just aid and transitioning.

I know for a lot of autistic kids, they have PDA or pathological demand avoidance where you ask them to do something and they go into fight or flight because you’re asking them to do it. You’re placing a demand on them where you can use music. to signal some, to signal a transition so you can tell them, okay, you can, you know, play your computer game when this song comes on or when this sound comes on, it’s time to transition to this activity.

So when it’s time to transition, it’s not you telling them it’s time to transition. It’s the music telling them it’s time to transition. And it can also help, you know, like with kids who just have a hard time transitioning. Um, they know when they hear that sound that it’s time to go to a new activity.

I know a lot of our classroom teachers will use that, that technique for the classroom instead of, or instead of flashing lights or yelling at the class, they’ll have a chime or a music that goes.

And I could see the benefit of that. Um, if we have any teachers that are listening. If you have a child in your classroom that has a hard time with transition, that’d be a perfect way to help them to, to kind of gear up to it. I know we w we would use things like that with our kids just cause it, I was going to be talking to, I was blue in the face cause they weren’t going to hear me to begin with, but having something that wasn’t mom’s voice, they could hear it better.

It just was an easier way for them to, to, to gear up for those transitions. And we would do two where they had like a 10 minute window. And then when the final one came, then they, they, they, they knew it did cut down on a lot of the arguments and the stress level on my part when they were young.

Yeah, for sure.

So, um, music can be really individual. You’re talking about Bon Jovi and. Imagine Dragon’s Knot, they’re very different, different styles of music. Children can have very specific choices in the styles of music that they like, and it may not be what we choose as parents. They may respond to something so totally different.

How do you adapt your music therapy approach to cater to a child’s specific taste and their sensory needs?

I do an assessment to begin with, and then I ask the parents, you know, like, what kind of music does this child like? What kind of music do they respond well to? What kind of music do they absolutely hate?

Sometimes you play a song and kids just freak out because they do. Like my sister, when she was like a one year old, she would cry every time Josh Groban was put on. And it was sad because Josh Groban was one of my mom’s favorite artists, but she would just cry. And so. Or do there’s some kids that don’t like words to music.

And so if you sing, they, they just shut down. And so that’s important to tell your music therapist, obviously. And then it’s just trial and error. You know, you have to try some things, but when you find the song that finally like, Hits with that person, then, you know, you know, you struck gold. Um, but yeah, it’s just asking, asking the kids if they can tell you what they like, you know, if they’re old enough to tell you, asking the parents and then just trial and error, so that’s what, you know, and then we, it’s the same with instruments, you know, sometimes there’s this one kid that I could not engage him with anything.

Nothing that I worked, nothing that I did worked. To get his engagement. And then I brought bells one day, just the desk bells. He was right there with me and he was able to participate and he was able to play the music with me. He loved it. And so it’s just, yeah, it’s just all trial and error. You just have to learn what works.

And as you know, you get more into the field, you kind of have a better educated guess about what’s going to work.

I know even for me personally. There are certain ranges of sound that are more pleasing to me. It’s the vibrations of it. Everything can be more calming. And then others, I can walk into a church worship setting and I can just feel the stress level rising because of the amount of bass or something that’s going on.

So I think we’re all. Sensitive to different vibrations that are happening around us. So I could see that being a little challenging as you’re trying to figure out. Um, and, and hopefully if you’re in a group setting, you’re not setting off one and calming another.

Yeah. Groups are hard. So,

yeah, I, I, I could see that.

Yeah. Yeah. So when we do groups, we try to pair groups according to their musical, you know, um, Like what they like in music, their developmental age, their chronological age, um, so group groups are definitely hard because then you get kids that are super loud and then you have another kid that I just had this happen.

I walked into a group. I was not in charge of registering them. I was not in charge of putting them together. This facility just asked me to come and do a group and there were kids in there that were very sensitive to sound. And then there were other kids who were sensory seeking and they were very loud.

It did not work. So that’s just something to be aware of when you’re putting groups together. You have to be aware of what everyone’s saying.

Well, this, this season I’ve, if you’ve been listening listeners, you, you’re aware of this already, but for season three, we’re going through having each guest share some words of wisdom by completing an open ended statement that I give them. So I’m going to start the statement and then I’m going to have.

You repeat that, what I say, and then complete it with your own thoughts. So I know that was kind of convoluted the way that I just presented it, but, but I think, I think we got it there. Yeah, we got it. So I that I’m going to give you. And, um, and if you need me to repeat it, then I can, I can do that. So the first one is the most surprising thing I’ve discovered about using music therapy with neurodivergent, and let me try that again.

My mouth isn’t working today. The most surprising thing I’ve discovered about using music therapy with neurodivergent children is.

The most surprising thing I’ve discovered about using music therapy with neurodivergent children is how different kids are and how one piece of music can do one thing to one kid, and it can totally change in another kid.

So just knowing that. Musical preferences like we’re talking about just are so important.

Okay. Next one for parents feeling overwhelmed by their child’s challenges. I want to emphasize that.

For parents feeling overwhelmed by their child’s challenges. I want to emphasize that there is help out there. You can reach out to music therapists.

You can reach out to parent educators, occupational therapists, whoever you need and to really see what your child is into and focus on that connection piece before correcting your child. Really focus on connecting with them, engaging in what they like, and really building that bond. And I think you’ll see a difference.

Excellent. Excellent. Very nice. Okay. Third one, one key skill every parent of a neurodivergent child can develop through music is?

One key skill every parent of a neurodivergent child can develop through music is, um, learning coping skills. You can, you know, like we talked about, you can use coping skills using music and you don’t have to be a musician to do them.

Right. When a parent tells me their child is struggling with blank, I always recommend trying blank.

When a parent tells me their child is struggling with going out in public, I always recommend trying to look at the sensory needs of their child. Like, are they sensory seeking? Are they sensory avoidant? Do they need, you know, headphones? Do they need sunglasses? That’s just one thing that you can try is really looking at the sensory preferences of your child.

Great. Great. All right. And the final one, the future of music therapy for neurodivergent children holds great promise because.

The future of music therapy for neurodivergent children holds great promise because it’s growing. More people are hearing about it. More people are engaging in it. There’s more research being done. I am just super excited about it.

Those are all great advice. I, I, I’m, I’m glad I, I gave you all, all five of them instead. Instead of just three of them. .

Oh, yeah. Well, thank you, .

Well, well done. Thank you.

Thank you. Thank you.

Can you tell us about any projects that you’re working on and how our listeners can connect with you?

Yeah, I am. Starting parent coaching. And so we’re starting parent courses where it won’t be all music therapy. It won’t be all music, you know, strategies, but there will definitely be music strategies mixed in there. So if you’re a parent who’s new to the neurodivergent world, if you’re a parent, who’s.

Maybe their child doesn’t have a diagnosis yet, but you’re just thinking that your child is neurodivergent or you just got a diagnosis. Um, we really delve into what is involved in the neurodivergent world. How can you help your child, you know, focus on positive parenting strategies and music strategies when appropriate.

And if you want to connect with me, I have a podcast called every brain is different where we celebrate neurodiversity and we give parenting strategies to parents. Um, I’m on Instagram at Boise music therapy. I’m on Tik TOK. Every brain is different. Um, yeah, just connect with me there.

All right. We’ll, we’ll include all those links in the, in the show notes.

And if you’re listening on audio, look at the webpage that’s that’s linked there, because I’m having trouble getting the show notes posted on the audio platforms, but it is on the webpage that that is showing up on that. So you’ll, you’ll be able to find it. Well, Samantha, thank you for sharing about your work today.

I’ve learned a lot and I know our listeners have as well.

Well, thank you for having me on. It was really awesome.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

80% Divorce Rate for Parents of Disabled Kids? Myth Busted! Here’s How to Build a Rock-Solid Marriage Instead.Show Notes:In this episode, Kristin & Todd Evans, authors on marriage with disabled children, share their struggles and winning strategies. Open communication, avoiding assumptions, and professional help are key. Self-care, shared responsibilities, and celebrating small victories strengthen the bond. Though challenging, marriage can thrive with effort and support! Their book offers tools for couples on this journey.

Connect with Kristin and Todd:

Website: https://disabilityparenting.com/book/

To preorder the book:

https://www.amazon.com/Build-Thriving-Marriage-Children-Disabilities/dp/1540903737

Learn more about Kristin’s story: https://youtu.be/ZcMPo8sQBU0

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Thriving Together: Marriage and Disability – Advice for Parents of Children with DisabilitiesRaising a child with a disability can be an incredibly rewarding experience, but it can also take a toll on a marriage. The constant stress and strain can lead to communication breakdowns, resentment, and feelings of isolation. But there is hope! In this interview with Kristin and Todd Evans, authors of the new book “How to Build a Thriving Marriage as You Care for Children with Disabilities,” we learn valuable strategies for building a strong and supportive relationship. (See the full transcript of the interview below.)

Building a Support System: You Are Not Alone

Kristin and Todd emphasize the importance of building a support system for yourself and your spouse. Feeling isolated can exacerbate existing problems. Look for online or in-person support groups specifically for parents of children with disabilities. Reconnect with old friends, or seek out new connections at therapies or conferences.

Communication is Key: Avoiding Assumptions and Building Trust

Disagreements about treatment approaches or parenting styles can be a major source of conflict. Kristin and Todd advise couples to communicate openly and honestly. Instead of jumping to conclusions, assume the best of your partner and believe that they have their child’s best interests at heart. If you can’t reach an agreement, consider seeking professional advice from a therapist or specialist.

Shared Responsibility and Respectful Delegation

It’s likely that one parent will take on the primary caregiving role due to appointments, therapies, and research needs. This doesn’t mean the other parent is uninvolved. Discuss childcare responsibilities openly and decide what works best for your family. The key is mutual respect and trust. If one parent is the primary researcher, the other parent can defer to their expertise when making medical decisions.

Finding Joy in the Journey: Self-Care and Celebrating Small Victories

Chronic stress can take a significant emotional toll. Prioritize self-care activities to avoid burnout. Schedule date nights, even if it’s just a quiet evening at home. Remember, a healthy and happy parent is a better parent. Don’t forget to celebrate the small victories, the moments of joy and connection with your child and with each other.

Marriage Isn’t Doomed: Building a Stronger Bond

The statistics may be daunting, but Kristin and Todd debunk the myth that marriage is doomed when you have a child with a disability. With focus and effort, couples can build a stronger and more fulfilling relationship than ever before. Their book offers practical tools and exercises to strengthen your communication, manage stress, and build a foundation of trust and mutual respect.

Remember, you are not alone on this journey. By building a support system, communicating openly, prioritizing self-care, and finding joy in the little things, you and your spouse can create a thriving marriage and a loving, supportive environment for your child.

Todd and Kristin Evans are award-winning authors, speakers, and special needs parents. They are passionate about helping other special needs parents thrive in their faith, marriages, and mental health. In their new book, “How to Build a Thriving Marriage as You Care for Children with Disabilities” (Baker Books), they help couples build the tools they need to strengthen their marriages. Todd and Kristin have served together in fulltime church, adventure challenge, and retreat ministries. Kristin is a Licensed Master Social Worker experienced in Christian, family, couples, substance abuse, and crisis counseling. Connect with Todd and Kristin and explore their many free resources at DisabilityParenting.com.

Episode #91: Marriage and Disability: Secrets for a Happy Marriage When Your Child Has Special Needs***80% Divorce Rate for Parents of Disabled Kids? Myth Busted! Here’s How to Build a Rock-Solid Marriage Instead.**###### (Recorded March 25, 2024)*

Full Transcript of Interview:

Todd Intro Clip: For couples facing the challenges of raising children with disabilities, the most important thing to remember about the relationship is that your relationship is the foundation of everything that everything else that you do in life is going to flow out of that. So, if it’s cruddy, probably the rest of your life is going to be cruddy too. So, put in the time and effort to make that relationship good.

Tonya Voiceover: Do you ever feel like your marriage is taking a backseat to your child’s special needs? You’re not alone. Many couples face incredible challenges when raising a child with a disability. But what if I told you your marriage could not only survive but actually thrive? In today’s interview, I’m talking with Kristin and Todd Evans, authors of How to Build a Thriving Marriage as You Care for Children with Disabilities.

They’ll share their own story along with practical tips and strategies for strengthening your relationship and rediscovering the joy in your marriage.

Tonya: Todd and Kristin, welcome to Water Prairie Chronicles podcast today.

Kristin: Thank you so much, Tonya. glad to be here.

Tonya: So, I’m really excited to have you both here.

Kristin and I met in season one when she came on to share her own personal story. And there was a change in ministry happening at the time. And that’s why I’ve been looking forward to meeting you Tide, because I knew that both of you were moving in a different direction and listeners, if you’ve met Kristin before, or if you didn’t go back to see episodes 23 and 24, she shared her story there and she also shared some cool tricks and tips for helping your child stay consistent on schedule.

When their own breaks, whether it’s weekends, the holidays, or over the summertime. So, she really had, had some great information during those. But today we’re going to be talking about this new ministry. Todd and Kristin have a book coming out soon, and I’m really excited about this. I got a chance to see it, so, I’m going to hold it up here.

They can tell us more later, but I’m going to be digging from this and some of the questions that I’m asking them about. And first of all, Todd and Kristin, you did a wonderful job on this. I really enjoyed going through it myself and there’s so many tools within this. So, I’m looking forward to sharing just a little bit of what I’ve learned and digging deeper with it, but then also to have you share at the end with it.

So, listeners stay, stay with us. Cause at the end, they’re going to go into a little more detail about the book itself. But, um, but one thing that I noticed when we were going through it, we, we just kind of described the caregiving a little bit, but you mentioned at the beginning of the book that this adds a strain to marriage. Can you explain why that’s an added strain to a marriage for those that are caregiving for others?

Todd: I think from every perspective, it’s, it’s more of a strain. You know, we each have a kind of our own perspective and kind of view on the past. Um, for me, it was especially, you know, my kind of roles in the family were very much the financial aspects.

Um, so, the strain of, of, you know, having to care, um, for another individual that has lots of medical expenses and medical needs and all kinds of machines therapies. Um, so, that’s a strain obviously from, from my perspective, uh, as well as just time, um, for both of us really, that, uh, there’s just so much caregiving and so many things you just have to do that there’s, uh, just whittles away the time that you have for anything.

We considered normal in our marriage before that, you know, being able to go outside and walk together or bike or, um, you know, go out to the park or something, you know, all that just kind of changed with a lot of our circumstances.

Kristin: Yeah, and I’d say 1 of the biggest factors is whatever type of special needs or disability your child or sibling or parent has, um, that adds stress in different ways and added stress on the person.

Impacts the marriage, the added stress can create mental health symptoms. A lot of parents, uh, who have children that have had some kind of crisis, whether behavioral, medical, mental health have, uh, post-traumatic stress disorder, at least 20%. So, one parent is stressed, like Todd said, with finances or just trying to keep his job and make life work.

I’m stressed emotionally. And that stress on this individually really stressed our marriage. Um, and stress also does things to your body, um, that makes it difficult to connect physically as a couple. So, it, you know, the list could go on.

Tonya: Well, you mentioned in the book that the stress is there. We recognize that, but that can also allow for a deeper intimacy in the marriage.

How, how does that work?

Kristin: Working through learning how to work together to problem solve these very complicated problems, learning how to grieve together, learning how to manage stress together, learning how to find meaning and joy. In the present day and present moment, um, actually helped us create much deeper intimacy and growth as a couple, because we had those very difficult.

Dark days. Um, and once we began, now we did not do this at first.

Todd: We struggled. So, at first, it was more like a wedge.

Kristin: The first part of the book is us struggling. We have struggled. It

Todd: drove

Kristin: us apart. It can either drive a couple closer together or drive a wedge, any of those things. Um, and once we began to learn how and develop the skills, To work through that together, um, going through that emotional pain, those sometimes just seemingly crazy, probably the complicated nature of the problems we have to solve that shared misery ever heard, you know, shared misery it, it gave us this, um, opportunity to grow closer and develop a deeper connection than we could have otherwise.

Tonya: There is a chapter in the book about stress management. So, I wanted to ask, could you share some tools that you found that helped to strengthen your marriage? Maybe give an example that our listeners could try themselves.

Kristin: I think it’s both. Individually learning to regularly de-stress on a daily basis and coming together and de-stressing relaxing as a couple. And for me and research shows for a lot of women, we have to, it takes a little bit more for us to de-stress and we have to continually find ways to do that throughout the day that men do.

But, um, it’s very important to do both. So, one thing, um, that we started doing. About eight or nine, maybe nine years ago is encouraging each other to care for ourselves more. And this is so hard for caregivers. Some people literally cannot get out of the house. And we understand that there were a couple of years, Bethany Grace was medically fragile that I didn’t, I didn’t get out of the house.

Um, but we started encouraging each other and sacrificing so the other person could get out and go jog. Um, Todd signed up for a half-iron man. Uh, I thought he was crazy at the time, but, um, you know, it took creative work to give him the gift of saying, no, you need to go run your business. today. You know, I got it.

Um, so, that was part, both individually finding ways, um, to de-stress and then as a couple.

Todd: Yeah. Um, yeah. Learning those skills and you kind of take it for granted, you know, all the time when you have that spare time and can do them and just kind of go out and do them. But, um, but yeah, the individual things, you know, Kristin was great about, um, saying no, take, Go take 30 minutes or 15 minutes, whatever, get out and, uh, and do that.

Um, but then also, like she was saying that it’s important to find ways together to, um, a lot of that does build, um, a sense of togetherness because the other person’s sacrificing for you. So, that, that does build your relationship. Um, but, but finding ways together and I’d say probably the biggest one for us, um, That, that means a lot to me and still does is that we kind of have a unwritten pact, um, that every night we work together, um, to get our daughter to bed and do whatever else we have to do.

And then we kind of crash at the same time in the bed. Um, so, it’s not like one person is overburdened trying to do something. So, it may be, you know, nine o’clock one night, it may be 10:30 another night or, or later, but, um, we keep working kind of together on what has to get done. Uh, but then we kind of crash in the bed together, um, usually try to watch a funny show.

That’s another big piece of de-stressing for us is, is watching a, uh, you know, one of the late night comedians who recorded from the night before. I can, we’re not staying up that late, but, um, or some kind of funny sitcom or something, um, that gets us laughing together. Um, and then we turn off the lights and say goodnight to each other.

And that’s kind of a routine and a rhythm for us that, uh, that just every night I know, uh, I get to go to bed with my, with my love and, and, um, get to just close the day out together. And then for us, that’s a way of de-stressing, um, all those things together.

Tonya: I like that. And that, and, and I like the example too.

It can be as simple as watching a show together. It doesn’t have to be. That you’re going out to a movie and getting a babysitter and trying to, to figure all those pieces into play as well. The, um, and I noticed when I was going through, you do have tips throughout the book, which is nice because you give a lot of, a lot of good things that, you know, The readers can pick and choose what they want to pull from that.

And, um, you had, you had some surprising ones in there that I never would’ve thought of. So, so,I thought, I thought it was, it was good. One of the things that I wanted to ask about, and we’ve talked about this before with some of our other interviews, but how important it is that we build a community around ourselves.

And, you know, I think those that are listening who are parents, they recognize how isolated you can feel sometimes. You may not feel that you can leave your child. If there’s a medical issue, or you may not feel like you can take your child with you, even as simply as going to the grocery store, because sometimes it’s just too hard to do those things.

So, our parents can feel isolated. How can we help them combat those feelings of loneliness? Any suggestions on that?

Kristin: Yeah, that that is a big one. And it’s so, so important for so many reasons. And especially if you live, um, further away from a major city, it’s probably even harder, uh, especially to find a church, um, that might have a special needs ministry or respite program or something like that.

Those are easier to find. Obviously, um. The closer you are to a larger, like we live 10 miles South of Nashville. And, um, I would say just keep trying, just keep trying to find support. Um, whether that’s, if you go to church and they don’t have a special needs ministry. We don’t like to ask a special needs parents for help.

And even when people offer a special needs parents, we don’t like to accept. But. We have to. That’s just basically what it boils down to, to lower our stress, to give us that emotional support, to make it possible for us to get out of the house together or have a moment together alone at home as a couple.

Um, we just, we have to. So, I would say If you feel alone, um, a lot of people don’t have the support of their family and maybe even friends they used to have, uh, or they’ve been, they’ve left a church, um, that happens a lot when they have a child with disabilities, I would say just keep trying, just keep asking for help because without that support, emotionally, practically, um, It’s almost impossible to thrive as a special needs parent

Tonya: When our children are first diagnosed, we’re just overwhelmed where, and there’s a lot to do.

So, I think it sneaks up on you that, that, that loneliness and isolation. Because you’re so busy keeping the appointments and you’re working with doctors, you have interaction with people, maybe not for yourself, but just in learning how, how you’re going to survive, and what those next steps are. So, maybe it’s been a few years, maybe they have a preschooler now.

And things are more at an even level. But as you say, maybe they don’t have those friends anymore because they haven’t been able to stay connected. Um, maybe they’ve, maybe they’ve not been able to go to church and they’ve been away for several years. Is it okay? Cause I’m thinking we may have someone listening who needs to know that they have permission to do this.

Is it okay for them to call up that friend again and try to reconnect? Is, is that something that you’ve seen? As you’ve ministered to other couples that they can, that it’s easy to reconnect. Or is, is it better to try to find totally new venues of where they’re going to find those, those connections?

Todd: I think really, it’s a, it’s a both-and thing.

Um, I think for sure to reach out to those, um, what we found and talking with people, and in our own experience, too, is that oftentimes those friends that have kind of become distant often that distance is created because they just don’t understand your situation. They don’t know how to be in your life.

And so, it’s easier to not connect than it is to ask those harder questions or then be you often find they’re afraid they’re going to hurt your feelings. If they ask about something, they’re going to say something wrong about your child or you and so they’re afraid to reach out oftentimes. So, if you take that 1st step, a lot of times that just opens the communication and can.

reinvigorate things with that relationship. Um, so, I’d say definitely, um, reaching out to maybe some people around you that have been close in the past. Um, I think there’s something that connects us all when we have something shared in our past that it becomes much easier to reconnect with just a little bit of effort.

Um, but also, uh, this is the both-and part is, you know, there’s a whole other community out there that you can connect with. Um, just thinking about going to therapies. Um, you’re sitting there with other parents in similar situations that may just be quiet because they’re exhausted or something else. But, um, if you can start up a conversation, um, that can be somebody you can text with or talk to when a, when a hard day happens, uh, to build those relationships.

Um, or there’s so many, um, other people out there that are struggling in similar ways that we don’t see each other. Uh, we don’t cross paths often because oftentimes we’re stuck at home. We’re not in the normal channels of, um, community events and, and sports and things like that. Um, but you know, for our daughter’s syndrome, there’s a whole society out there that, um, meets yearly.

Um, so, we on

Kristin: Facebook

Todd: and on Facebook. And so, we try to connect with some of those people and reach out and kind of get creative in that way and find other parents that are going through similar things. It may be the same disorder or disability, or it could be something totally different. Um, but you have that shared, um, experience of, of raising your child or helping your parent or your sibling.

Uh, and you can find them and build those relationships quickly because you have a shared core of what you’re going through.

Kristin: Even if your children have.

Todd: Um,

Kristin: and I will say I isolated for the first, probably, I don’t know, three years. And that almost didn’t turn out well, if you listen to my story and other podcasts.

Um, but it, it, it is scary. I will say it takes vulnerability. It takes energy, which special needs parents don’t have the thought of mustering up the courage and the energy to call or text someone. Um, even another special needs parent, it’s scary, but I would just encourage you, if you are listening, to do it. Pick up the phone, text. If you’re sitting at that therapy appointment and the other parent is quiet, they are probably going to be so glad if you strike up a conversation. They really are. Um, because connecting with. Other parents who are caregivers and sharing and, um, supporting one another actually rewires our brains as caregivers.

I’m a research nerd, and that was the coolest journal article I, I ever read. It really does. Um, so, I just encourage you to muster up that courage and energy. To connect with another parent.

Tonya: So, as you’re saying that I’m thinking back through the last two and a half years, and we’ve featured several different types of organizations.

So, if you’re listening and you have a child with Down syndrome, we’ve, we’ve covered Gigi’s Playhouse. You’ll see with that, that you have a huge group of other parents who completely understand where you, where you’re coming from and have advice to help you. We have even the Miracle League baseball program, any child that’s Who’s listening will be able to participate in that in some way, shape, or form.

And what I love about that type of environment, the parents sitting in the stands, that’s where I got the biggest value. My husband was coaching. My daughter was playing. My son was a buddy. I was sitting in the stands cheering on the team, but I met the other parents and not a single one of us had the same issue that our child was facing.

But we all understood therapy appointments. Well, all understood working on IEPs in school. We all understood trying to find friendships for our children. Where they could actually be their true authentic self and not kind of feel like they were on the sidelines. And so those conversations were great with my daughter, because of her visual impairment, we got involved with a group for the blind that were playing the sport of goalball.

And that became her favorite sport. It was a safe sport she could play. And as we’re sitting there, not saying anything because it’s a silent sport. The kids could hear the ball, but we were whispering, All of these ideas though, that we were having and what we had tried or, and adults would come to watch who were blind and they would then share with us what their journey had been.

And so a lot of what I was learning as a parent was from those interactions. So, parents listening, there’s a lot out there, but if you feel like you don’t know where to even start. Send us an email. We will get you connected with someone wherever you are. There’s, there is a way to get you in there. Even if it’s a Facebook group to get you started.

I did want to talk a little bit about team building. We talked earlier about how those shared stresses can kind of draw us together and trying to build that community and all, but you address in the book, some of the. Challenges, maybe we’d say there are stresses, but they’re also challenges. And some that I thought of, as I was thinking of that were parenting styles.

So, he and she may have different ways of, of how they’re going to do it. You actually give an example in, in, I think it was chapter 11, uh, which, which was really a cute, cute intro. And I could see that happening in every family around the country, but then also you might have treatment approaches. One may be all for trying the next research method and the other one may be hesitant to try even a supplement.

So, how do you navigate those differences and, and keep your relationship strong?

Kristin: And to throw in there, typical parenting, uh, styles, techniques, discipline, don’t work with the child who has special needs. So, you throw that into the mix and, you’ve got, you know, Uh, an environment that just is going to breed conflict in couples.

Tonya: And if you have more than one child, parenting for those two children is going to not, and in a typical family, they’re not going to be the same, but they’re going to be closer to being the same than they would if we’re talking about a child with extreme needs and a child with maybe other extreme needs.

A lot of our families do have multiple, um, issues that they’re facing with, with different children.

Kristin: It gets complicated. I’ll let you take that one.

Todd: it’s kind of, so, it’s, we struggled with that, and we hurt each other quite a few times. Um, and just really got mad at each other and, and, said some mean things and you don’t care about our child.

I think we’d said those phrases multiple times, the different things. Um, and we finally kind of came to this realization. We both love our child and that is the most important thing and realizing we may have different approaches. Um, so, we had to talk this out and literally say this out loud to each other.

I know that you are thinking the best of me and for the best of our child. And. I’m going to keep that as my foundation. And if I know that, um, I know you’re always to think in short, think the best of your partner, um, and that they are trying to do their best and their situation that they can. And that foundational piece helped us, um, tremendously to not get so frustrated at one another, to think back to that, that we may not agree, but your heart is there, you’re thinking the best.

Um, And I’m going to think the best of you and I’m not going to jump to conclusions that you don’t love our child. You don’t do any of this stuff. Um, and that, that helped, um, kind of get us in the, in the right direction to, to working together better.

Kristin: And I, I think 2 other main things, um, 1, if we can’t come to an agreement, um, like we could not come to an agreement, um, about a certain, uh, treatment or care need getting a professional opinion.

Because it’s, then it’s not you telling each other, but you’ve got someone who’s an expert in it and working with children and diagnosing this, um, a lot of times hearing it from that expert. Whichever parent is hesitant or, you know, not on the same page, um, will that will help them understand more and maybe get on the same page.

So, I would say definitely like, with behavioral and discipline, and you just can’t figure out how to parent your child, um. It is worth the time and, and the resources, if you, if you can at all possible, um, spend them this way to get a behavioral specialist, because that is the parenting piece is a huge stressor on the marriage.

Huge. Um, and that breeds a lot of conflict. The worse the behaviors of the child, the more stress on the marriage. Um, so, I would say definitely the professional, uh, help. The other thing is it’s, it’s, it is very unlikely that both parents are going to be caring for the child the same percentage of the time now.

Occasionally that happens. Uh, but typically there is a primary caregiver who takes the child to the therapies. The appointments are at home with the child with either behaviors or medical needs. Someone is taking that primary role most likely. Um, and that. that in general has been me, um, ever since the kids were young.

And, you know, and I was doing all this research and, and so concerned and trying to present it to Todd and, and he just dismissed it and yes, it was very hurtful. It did do a number on our marriage and that, that was, that was one of the moments I look back to that really we’ve had to heal from that.

Um, but what he has given me is learned that, okay, you are the one who goes to these appointments. You’re the one who’s doing the research talking to the doctors. I’m going to defer to you. And

Todd: I’m still going to stay engaged, but I will defer.

Kristin: Exactly. So, like, if there’s a medical care decision, you know, that needs to be made, I’ll kind of be like, okay, this is what’s going on.

What do you think? And we’ll talk about it, but at the same time, he’s going to trust me to have more experience in the knowledge to kind of defer to me to maybe make that decision while I gladly defer to him about finances and that’s one of the things that we talk about in the book is if, if we both did everything, we’d never get anything done.

Um, so, I would say definitely that thinking the best of one another. Entrusting your spouse, that they have the best interest for your child.

Tonya: Kristin, earlier you referred to mental health and we did, we talked a lot about this during your first interview, but I, um, I know a lot of our parents are going to be coming from a perspective of dealing with depression.

You mentioned the PTSD and I’m glad that you did because I don’t know that every parent calls it that, but we have a lot of parents who have that level of trauma that they’ve worked through and it’s not that they have a child that’s trying to harm them, but just the situation that they’re in can cause that level of stress.

So, some of them may have shame involved with trying to get help. Do you have advice for them beyond just calling a therapist, but how do they get past the hesitations they may have and to the point of being able to begin healing and to get the strength that they need?

Kristin: I think just realizing, first of all, if you are struggling with depression, anxiety, um, clinical levels or not, I mean, subclinical levels of, of trauma, you’re in the one in three of us, which I think is actually low.

It’s one, it’s about 33 percent that report of a special needs parents that actually report. that they’re struggling. So, I know there’s a lot more out there. Um, there is nothing wrong with you as a parent or a person. It is the chronic stress that you are under and the trauma that has caused this and the, and the chronic grief as well.

We, as special needs parents experience chronic grief, you combine all that and it is the perfect recipe for becoming depressed, which I was that I, I share about, um, and I did not seek help, uh, until I think Bethany was 16 months old, which was way too late, um, because I had already started experiencing the trauma, even during the pregnancy and delivery.

And then she was in the NICU and, and it doesn’t have to be medical trauma. Bye. It can be the behavioral, it can just be the effects of the daily chronic stress, but I would say that what finally, and Todd didn’t understand, and we talk about this in the book, he didn’t understand, he didn’t support me going for help, uh, for a lot of reasons.

Logistically, financially, he just, he just didn’t understand. And so your, your spouse may be saying, just think your way out of it. Just,

Todd: just suck it up.

Kristin: Do her bolus feed and her feeding tube stuff without getting emotionally sucked into La La Land, which it just, it was a stress response. So anyway, the thing that finally hit me was I had to not care about what other people thought I had to put myself first because if I didn’t, I wasn’t going to be there and be healthy.

to care for my child. And I think that’s what a lot of us moms, especially we have guilt. We have mom guilt. We feel like we’re not a good enough mom. We feel like we shouldn’t spend time on ourselves that ultimately in order for your child to be the healthiest and well-developed child, they can possibly be.

We have to be our healthiest and that’s what it boils down to is deciding I want, I want to be the best version of me for my family and I deserve to be healthy emotionally. And, um, I need to take this time to go care for myself, whether it’s just going to counseling, to grieve, to vent, to have somebody that you can talk to and not feel judged or, um, you know, afraid to talk to you.

So, I just want to encourage you, if you’re listening. And, um, you are struggling, especially if you are in serious depression. Um, don’t wait, don’t wait until things calm down. Don’t wait until, Oh, things won’t be as stressful next month because you won’t go, you know, um, you know, take a step today to go get that help.

Tonya: We’ve talked about some of the stresses. We’ve talked about some of the, just the strain that can be on a marriage, but I want to finish by talking about some joy. Because there is joy there. Parents are listening. If you’re in the middle of the stress, there is joy there. And I know Todd and Kristin well enough to know that they would also agree with that.

So, do you have any words of wisdom for our parents who are in the challenging times of how they can find joy and connection in their marriages?

Todd: Well, I think one thing to kind of realize is that joy doesn’t happen overnight. Um, you can’t just say I’m going to be joyful or anything else and will yourself into it.

Um, You, you have, it takes a sustained effort to work at it, to get to a point when you look back and you say, I’m a lot more joyful than I was. A month ago, a year ago, 10 years ago, and in different stages along the way. Um, so, that’s one of the biggest things. Um, but it’s finding joy in the little things.

Um, there’s all this stress of our daughter. Um, but there are some just absolutely beautiful moments where she just rocks our understanding of the world. Um, the things that we think are important or whatever, you know, she’s, Doesn’t care about, but yet she can bring out this joy of the, of the simplest things, you know, and when we see that in her, uh, and take a moment to stop in our own lives and just say, you know, all this other stuff doesn’t matter.

Um, let’s just have joy in the moment and enjoy this little thing, um, whether it’s, uh, looking at a flower outside or, um. Every time we see a, you know, a rose or other flower going by and smelling it. Um, you know, just yesterday, you know, we were a little bit stressed out about things and a lot going on right now in our lives and taxes do.

Um, but you know, it’s like, all right, Beth, let’s get in the car. We’re going to go to the dump and then we’re going to go to the tractor supply company. I had to return some stuff, but you know, what was it? The tractor supply was chickens. So, little baby chickens. Um, so, just to. Take that extra five minutes.

It took to put her in the car, um, and another five minutes to get her out of the car and, and, uh, into the store and, and everything, but, oh, she was just shaking, um, she was so excited. And to hold her hand while she was shaking, just anticipating the chickens coming, you know, walking across the parking lot and going inside, um, there’s moments like that, that, that are just.

You can’t, um, replace with anything else. There’s nothing else more joyful in life and those kinds of things. Um, or it’s working through with your spouse. Um, like we’ve said, when you get through something together and they’re there to lean upon and to listen and to. Be there to support you. Um, that’s, that’s one of the foundations of joy is, is knowing that long history of, I have someone that loves me and cares for me, and I’m going to be that to them and they are that to me.

Um, and that builds joy. Um, so, those are a couple of key ways of, doing this is really appreciate the little things and just. Continue to work with one another and value those times. Don’t just, uh, don’t just try to struggle through it. That’s what we did the first couple of years really was, it was more like a, something we had to bear through and that we kept hoping things are going to get better.

And we had to come to that realization that. This is the way life is, and we’ve either got to accept it and, and find a way to enjoy it and be a part of it, or we’re just going to feel worse and worse and degenerate into something that we’re not happy with, with ourselves,

Kristin: which we did. Yeah. But as he alluded to, we began to, um, realize that.

Joy is not about circumstances. It’s about choosing to live in the present day and being grateful. And some days it’s hard to find something to be grateful for. Maybe. Um, there were, there were years that if both of our children were not in the hospital and we were all home together, that’s all we need in life.

I mean, that’s still true, but there were years that literally trying to find something we were grateful for. Was we have a new morning together as a family. Bethany and Grace is smiling no matter what’s going on and just taking those special moments to celebrate and enjoy life together and just express gratitude.

Tonya: Well, we’re going to change gears here a little bit this season. I’m asking my guests to share some words of wisdom by completing some different statements. And because I was interviewing two people on this one, I thought it might be easier if I gave. It to them to decide which ones to say, because I wasn’t sure how I was going to direct it.

So, I sent Todd and Kristin a few statements for them to choose from. And, um, would you mind sharing those with us now?

Todd: Why don’t you go ahead? Oh, okay.

Kristin: Um, all right. We wish more people understood that raising children with disabilities has taught us the profound importance of. I feel like I kind of just said that, but I’ll elaborate just on living in the present day because, um, truly that is, that is where we are going to find meaning, um, and joy and purpose.

And, um, you know, we have to plan for the future, obviously, especially for our children. But at the point we’ve done all we can do to plan, Uh, it kind of becomes counterproductive and it starts to increase anxiety. The more we kind of spin our wheels. Um, so, I just, I would encourage people to just take a deep breath and look around at what’s going on in the moment and just be in the day.

Todd: Well, for couples facing the challenges of raising children with disabilities, the most important thing to remember about the relationship is that your relationship is the foundation of everything. That everything else that you do in life is going to flow out of that. So, if it’s cruddy, probably the rest of your life is going to be cruddy too.

So, put in the time and effort to make that relationship good. That even if that means, um, taking some time for yourself as a couple, um, you know, there’s times where we might’ve felt guilty, um, given our child a, little bit too much time. Preferred activity like a, uh, what do you call it? Tablet, um, and, and she kind of felt guilty about the screen time, but we need 30 minutes.

Um, that our child can sit on the couch, look at the tablet that we can just kind of. Have a time to watch a show together or to cook together or do something, um, and not feel guilty about that because your relationship is that foundation. You’re going to be better parents, you’re going to be better work in your workplace or whatever other environments you’re in.

If your relationship is healthy and growing.

Uh, then another one here, um, One tool that’s been the most effective in helping us navigate the stress of caregiving and strengthen our marriage is I mentioned it earlier, but it’s thinking the best of each other. Um, that, that really is one of the core things that we do for each other. Um, is I’m not going to talk down.

I’m not going to undermine or say, “why did you do that?” You know, I can’t believe you did that. What were you thinking? You know, those, those phrases have gone out of our, out of our vocabulary. Um, and instead it’s things like, “I don’t understand why you made that choice. Can you tell me more about it?” Um, or it’s other times saying, “you’re a really good mom. You really love our kids.” Um, and supporting one another in each of those ways, because I know that is your true heart and just reinforcing that in each other has been a huge tool for us.

Kristin: And the message of hope we want to leave listeners today with is your marriage is not doomed. The 80 percent divorce rate statistic isn’t true.

It is not founded on research. And as we spoke about earlier, by learning new skills and recommitting to your relationship and thinking the best of one another, You could actually build a deeper marriage relationship, a stronger marriage than you could ever have imagined.

Tonya: Excellent. That’s, that’s fantastic advice.

I appreciate you both taking the time to, to read through those for me. And, um, I know our listeners are going to really get a lot out of what you’ve shared with us. The thing I wanted to talk about now was we’ve, we’ve alluded to your book in and out of this whole interview. And I wanted to give you a chance to tell our viewers and our listeners about What you wanted to share about the book, but also how they can get their hands on it.

Kristin: Yeah. So, the first thing we want to share is we know you don’t have time to research one more thing and to read a book that’s wordy. Um, and it’s hard to get nuggets out of. So, the way we have designed our book, how to build a thriving marriage, as you care for children with disabilities, it’s very practical.

Um, As I said, I’m a research nerd. It is based on research, but you would not know it if we didn’t tell you because we boil it down to one simple phrase of do this and this is going to help strengthen your marriage and then we give some practical, practical ways to do that at the end of every chapter.

Um, there are. Uh, exercises that you can, um, pick one to do together to commit to strengthening that part of your marriage or building that skill. And, um, yeah, so you can, it’s not a book you just read through.

Todd: Yeah, we’ve kind of designed it as our thought, kind of in writing the whole thing was, um, what is this marriage survival guide?

Um, how do you survive a marriage when you’re raising children with disabilities? And so thinking about a wilderness trip, um, that you might have this book with you and you come upon this thing, a snake or a bush or, and you flip to the right page and say, all right, how do I deal with this situation?

That’s kind of how we think about our book. Is it, um. There’s some key skills that when you come across problems and you have things in your marriage, just flip to that chapter, um, read it. We’ve got some examples. We try to be storytellers and tell from our own experience because we’ve stumbled through a lot and we don’t want you to make those same mistakes

Kristin: and wander around like we did for years

Todd: and

Kristin: We have to build advanced skills as special needs parents.

It’s all special needs parents, not just married couples. We have to, we have to learn how to adapt. We have to build these special skills and it’s the same thing, uh, for married couples raising kids with disabilities. There’s some more skills you need. We learned that the hard way. Um, but we want to just, let’s say here they are.

This is how you can do it now. Go build them. Um, so yeah, so the book is available um, at most retailers, uh, Amazon, Target, Walmart, Barnes and Noble, um, Baker Books has it right now for 40 percent off in free shipping. If you pre-order, um, it releases May 14th. So, if you get your pre-order in, um, you’ll get it 40 percent off and, uh, the links, all the links are on our website, https://disabilityparenting.com. And, uh, we’re also on Instagram @disabilityparenting. So, please, uh, follow us, but also contact us and let us know if there’s some kind of question we can answer. It’s not on our website. We’d love to hear from listeners.

Todd: Which wants you to ask in your own mind, who do I know that has, that could benefit From a book like this, you know, I may not have a child with disabilities.

Um, if you’re listening, who could you get this for and give it to, uh, that’s really what we want this to be is, is something that you can give as a gift to somebody as well, um, to encourage them and their walk and their faith and just their struggles of every day.

Tonya: Well, for joining me today. I wish you well in the launch of this book, and I pray that the couples that get their hands on this, we’ll just find the guidance that they need and be able to, um, to use this tool as they need it. Wander through their own wilderness here. . .

Kristin: Thank you so much, Tonya. We enjoyed it.

Tonya: Don’t forget to sign up for the Water Prairie Newsletter for updates on what’s happening at Water Prairie, special promo codes available for our Etsy shop, and updates on our Amazon bookshelf. You can sign up at https://waterprairie.com/newsletter.

Thanks for joining me today, and I’ll see you next week.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Understanding Bipolar Disorder in KidsShow Notes:Raising a child with special needs is a constant challenge, and when bipolar disorder enters the mix, it can feel overwhelming. But there is help and support available. In this episode, I’m talking with George Brooks, a mental health advocate and father who shares his own experiences and valuable tips for navigating this journey.

Connect with George:

Website: mettaassociation.org (coming soon!)
Email: gbrooks[@]mettaassociation.org
Phone: 214-810-6518

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

George Brooks is a mental health advocate and entrepreneur with a powerful story of resilience. Diagnosed with mental illness at a young age, George has navigated a challenging path that included abuse, weight struggles, health issues, addiction, and the complexities of divorce and raising a son with mental illness.

Despite these hurdles, George has emerged as a beacon of hope. He is the CEO of a non-profit organization, a life coach, and a public speaker who inspires others through his lived experience. George is also a writer and producer, actively sharing his message through various creative avenues.

As a Black entrepreneur with a background in business ventures, George demonstrates the power of perseverance and the importance of mental health advocacy within diverse communities.

Episode #90: Bipolar Disorder in Kids: Tips for Parents***Understanding Bipolar Disorder in Kids**###### (Recorded March 12, 2024)*

Full Transcript of Interview:

Raising a child with special needs is a constant challenge, and when bipolar disorder enters the mix, it can feel overwhelming. In this episode, I’m talking with George Brooks, a mental health advocate and father who shares his own experiences and valuable tips for navigating this journey.

Welcome to the Water Prairie Chronicles, a podcast created for special needs parents and those who want to support them. I’m your host, Tonya Wollum, and I’m glad you’re here. This episode is sponsored by the Water Prairie Etsy shop where you can find Tales and a Tote story kits for young children and printable storytelling journals and activity books to help encourage older children to enjoy writing their own stories.

Check out the shop at https://waterprairie.etsy.com and be sure to sign up for the Water Prairie newsletter for special Etsy promo codes. Now, let’s get back to the episode.

Tonya: So George, welcome to Water Prairie. I appreciate you taking the time to come out and meet with me today.

George: I appreciate you having me on. Thank you very much.

So George, we’ve been talking a little bit about mental health and I’m excited because I have not had anyone that’s been able to come on the podcast yet to address this topic. We’ve talked about different types of physical disabilities, of invisible disabilities, learning disabilities, autism, but this is, this is a very important one and it’s a huge one in our country.

Can you give us a little introduction of who you are and what you’re doing now?

My name is George P. Brooks. I’m the CEO and founder of Metta Association, a nonprofit that I started about six years ago to deal with mainly black male mental health, but I help everyone. We also fight recidivism and deal with promoting healthy fatherhood.

My story about 8 7, I started understanding that I was having some mental health issues. My diagnosis bipolar DID and PTSD so life for me was growing life for me growing up was interesting Dealing with a mental illness that at that time they didn’t even diagnose people under 18 with bipolar, right? so I was Often my treatment was not aligned with what was gonna be best for me because the knowledge just wasn’t there at the time So I went through about a 10 year cocaine addiction.

I went through Divorce trauma pretty much any kind of trauma you can go through Almost. But I decided at a certain point to not let that determine who I was. And so that’s why I started my nonprofit. And that’s why I do all the public speaking and things that I do to try to use my trauma to try to help other people.

And through that, uh, try to heal myself as well.

So you mentioned that you were diagnosed at age seven with bipolar?

They didn’t diagnose, but that’s when, you know, going back, looking at it now and talking to like, yeah, you know, that’s probably what it was. But at the time, they didn’t, they didn’t diagnose it and people that, you know, they just speak, it was depression.

So, you know, back during that time, it was really like the 90s. Okay, I was a teenager, um, it was more, so I managed to throw an antidepressants at everything. Everybody was on Prozac. Everybody was on Lexapro. Uh, there, there wasn’t the, the forethought into different conditions and how the, uh, that people individually until today,

right?

Well, because what I’m thinking back is I graduated from college and 87, but just before you would have been diagnosed. And that’s like a crucial year because we had autism was now called autism. It wasn’t before that. We’ve learned that through some of our interviews. ADHD was a new thing. Never had existed before.

Now it’s, it’s out there. We’d talked about different learning styles where everyone doesn’t learn the same. So it’s like all of a sudden in our country, at least I think around the world. We were starting to recognize there’s more to the picture than what we thought it was,

right? Especially with the advent of, uh, the Internet and social media as well.

I mean, you know, just the wealth of information, but also the wealth of misinformation. Yes, so, you know. I think we’re seeing more attention brought on mental health because of the pandemic and what it really did to all of us. I think you got people thinking about their own mental health. I think you got people thinking, well, there’s nothing wrong with me.

Imagine what somebody that has an issue is dealing with. And when that happened, you saw more focus on mental health. You had the George Floyd, which was, you know, stimulating to a lot of us in the black culture. Because we do have to understand, too, that with those cultural differences, Uh, they’re going to be different in terms of mental health, how it’s perceived, you know, my community is perceived as a joke, not necessarily a joke, but as a weakness, as a flaw.

And what I hope to do in my work is to get people talking. And I feel like once we have those conversations, things will open up, you know, all revolutions started with a speech.

I was going to say, because. All these things that I mentioned, you’ve got autism, ADHD and all, they were hidden. If you, I mean, back when I was growing up, it didn’t kind of fit in.

No one mentioned it. You would hide it or you, that child would just kind of stay home because it was almost like a stigma against the family. But today we talk more. We, it’s that, I think I don’t, it’s not gone yet, but I think we’re getting closer to at least opening the door so that we can see that this is just a normal part of. Of life.

And every family is touched by this somehow, whether they want to admit it or not. It’s out. It’s there.

Right. And I want people to think more in terms of this to, you know, if you don’t have a diagnosable condition, think about how hard like, yeah. And imagine dealing with that with a, with a, with a mental illness, one that is not apparent that people can’t see.

So when you’re going through something, people can’t always say. Okay. A lot of times when we have a mental illness, we learn how to lie, manipulate, um, and cover our emotions. Now, the lying and manipulation comes from this. It comes from protecting yourself. I could see that. You to lying about how you’re feeling.

What’s wrong with you? Oh, nothing. What’s going on with you? Oh, nothing. Or you learn to manipulate people to get them to leave you alone.

Yeah.

You know, there’s so much involved in that. And I found that especially with, with, uh, teenagers dealing with mental illness, that’s when they really learn those skills that can be inherently negative.

So that’s why we need to do more with our young people too. And I’m really proud of this younger generation because they are a lot more talkative when it comes to mental health and a lot more understanding.

They do seem to be. Yeah,

it’s more so kind of my generation that’s a little bit slow on the uptake, but you know, I think it’ll happen in time because something did a fix all of it.

And you mentioned the internet earlier. The young people today, they grew up with the internet,

right?

So they’ve had access to, you know, I’m feeling kind of off. They can research that and see what it, what might this mean.

We’ll find other people going through the same thing.

Yeah.

Yeah. You know, so that that’s, that’s a good thing.

Uh, just had to be wary of misinformation. I’m a, I’m a strong advocate for therapy and medication. Yeah, I feel like it’s part of it. I’m not 1 of these people that’s going to sit up and tell you, oh, don’t take medication. They have side effect. Well, every medication has side effect. Right? The thing with psych means you have to remember that you either take about a month or 2 to really get in your system.

Okay.

Or the side of this kind of a bait. But you have to give it a shot. It’s not meant to, it’s not going to cure your mental illness. Be taking my medication does not mean I will not cycle. I will, but it helps me maintain a certain balance to where those instances aren’t as bad.

Your medication

is meant to manage, not cure.

Does it help you cope with those cycles? Is that, or does it lessen the severity of them?

A little bit of both, actually. Yeah. Yeah. It’s a little bit, they’re a little bit easier to manage. With my bipolar, I’m a rapid cycler. So it may go from high to low, like I could be sitting right, talking right now. It may go from high to low, high to low.

Okay. Oh, wow. So you just have to manage it. You know, it’s, it’s like, it’s, it’s, it’s almost like trying to drive a car with no brakes. That’s what being bipolar is, driving a car with no brakes, You might go up a hill slow, but when you come down a hill is fast. The mania is something else.

So we’ve mentioned bipolar.

Would depression be in that same category as far as mental health? Because I think a lot of our parents may be able to relate to depression.

Right. Well, well, depression is actually a part of bipolar, so I’m very familiar with it. But bipolar, uh, well bipolar is you have, uh, mood swings. You may go from mania, which is elevated speech, uh, hyperactivity.

It comes across as being really happy to being depressed. I think my longest depression was one year. Wow. One year. I really didn’t leave the house for about a year.

Wow. Okay.

So, um, but with depression, depression, I think is a lot more common. I think the, I think it may be overly diagnosed just because it’s typically diagnosed when somebody is going through something.

So make sure that, you know, you, when you talk to your clinician that you’re, you’re giving him the best information to, to treat you. A lot of times in mental illness, we don’t always tell the doctor everything we’re thinking or everything that’s going on because we don’t want to get through all this.

That helps for those Covid kids. Right. Right. That’s what you need. That’s what you need. Yeah. Don’t be afraid to go inpatient

when your doctor should be a safe place.

Right. Your doctor should be a safe place. A lot of times with mental illness, we recognize too when it’s like, you know what? I think I need a little stay and we, we need to not be afraid to ask for those times.

One thing that I, I think I have interesting perspective of, I was a child raised. While growing up with the mental illness by my parents and I’m raising it. He’s 19 now. Okay, I’m raising a son that’s bipolar.

And how old was he when he was diagnosed? So both of you were about the same age. Okay.

As far as parenting a child with mental illness patients.

Oh, I’ll tell you the most important thing. It’s not your fault. That’s the main thing. I could tell a parent raising a child with any disability or any mental illness. It’s not your fault because we all go through that moment to where we’re thinking, man, what did I do? Or this is some idea. Right? What am I doing wrong?

This has happened. Yeah, we can’t control what happens to us, but we can control how we respond to it. So if you don’t sit up there and be self deprecating and beat ourselves up over our child’s condition. You know, we can use the energy on trying to educate ourselves more about their condition in terms of being their best advocate because as a parent, our first job is to be our child’s advocate.

So, uh, and that’s even if you’re without a disability, so we can focus the energy elsewhere, but don’t beat yourself up. Don’t blame yourself. Don’t listen to other family members. Surround yourself with positive people. Somebody’s negative, I don’t care if it’s your mother.

Well, that’s something I wanted to ask you.

How do we build that supportive community around ourselves?

There are different groups. Uh, if you work with your child’s, um, physician, uh, their doctor, uh, online, Facebook, you can find groups everywhere and network. So, you know, Before, uh, we were, we were operating under the mindset of that family was everything.

Our family is our support system. That ain’t necessary.

Well, some, some families aren’t connected anymore.

I mean, even if you are connected, if they were given a negative vibe, there’s some people you take care of your child that you need to get away from. Because negativity kills. Is this tough managing the medication and you have to, okay, are they having side effects?

Is it working? Is it not?

Well a growing child, it’s going to be changing to right now.

Now I’m dealing with transitioning him into adulthood with a mental illness. So it’s like, wow, I appreciate that. I mean, I actually cried about it one night because I was, I’m so

I can only imagine

worried about because I know what he’s going to face.

So I’m just trying to do the best I can to make sure he’s prepared, you know, economically, spiritually, physically, emotionally, mentally, you know, I’m just doing the best I can because he’s over 18 now. I can no longer raise him at 18. All I can do is guide him. I tell him you’re 19. Now you need to be on your own.

You need to do this. You need to do that because my job as a parent, as a father to me is for the day that I’m not here. Yeah. And people don’t understand the pressure of raising a child with a disability. I’ve gotten all the strange looks. I’ve gotten all the, what did you do? I’ve got all, you’re not doing this right.

None of us as parents know what we’re doing. We’re just kind of going off of Societal influence and what we were raised by. So there’s no template or handbook because every child is different, you know, and especially you throw in a disability because we have to factor in how their child feels living with a disability.

They have their own frustrations. They have their own fears, you know, and things like that. And I know with my son, him watching me with my bipolar, it was doubly so, but we found ways to cope. Like one thing we always do, it’s like we can feel if each other’s having a baby. So it’s like, Okay, it’s a certain song.

We send each other every time. It’s like if I just if he if I’m having a bad day, he’ll just text this song to me and we do the same thing. So you learn to develop things, develop rapport with your kids. Put those things in place that are going to bring them comfort and time where they don’t have or moments where you’re not there or with our parents that day when we’re no longer there at all.

So, so they can, they can live a full life because living with a mental illness is difficult. I mean, it’s very, very difficult. It’s affected me in every aspect of my life. It’s affecting my relationships with people. It’s affecting my relationship with myself and my relationship with God. But I’ll, I’ll work through it.

I’m working through it. I have to be patient with myself, understand I’m a work in progress, uh, the potter still has his hand on my plate and um, just be patient as a parent, you know, parenting is the most beautiful thing in the world, but it’s the hardest.

Some of our listeners are professionals who work with special needs families.

Some of them are maybe family members who want to be able to support their sibling or their child who is the parent of a child. How can that? extended circle around us. How can they support a family, especially if the child is someone who’s facing a mental illness?

The best thing you can do, and this goes for any situation, just bring the right energy.

Come positive, come ready to help. You know, if you do that in any situation, a person will pick up on that and sometimes they may not even need your help. They just may want the prayer. They may want the sentiment. So, I always try to treat people the way you want to be treated, the way you feel you deserve to be treated.

And just come in with, come in with, with, with, with a sense of righteousness about it. Just genuinely wanting to help people and try to come in and be positive because that’s what people need when they’re going through things.

I’ve been through episodes where someone that I trusted let me down, um, to the point where it did spiral into a type of depression.

It was short term. I’m grateful for it because it helps me to understand whenever I do work with someone who struggles with this daily. Right. Right. A lot of our parents may be in that situation. Sometimes our kids, especially if they’re emotionally intense kids, they can cause trauma to the parent who’s trying to love them and care for them.

How do our parents find joy when they’re struggling in that battle?

This is how I did it because my son was outrageous. Police call all the time, truancy, all that stuff I’ve been through. The trauma that can be induced by a child that’s ill, it’s traumatic. But what I learned to do did not take it personally.

At first, it used to hurt my feelings, the things he was saying, it’s like, oh, he doesn’t love me. But it’s like, I got to understand it’s an illness. And as he got older, he would come back to me and say, you know, I really apologize. I know I said hurtful things. It was just about boys. It was this, it was that.

And we talked about it. And that’s why keeping that communication open, you know, is important, rather. Because. You can alleviate a lot of episodes with your kids by staying tuned in with them.

Don’t talk at them, talk with them. Listen to them. Have conversations. They’ll tell you what’s going on with them.

My father always told me, set up and listen to people. And that works with your kids too, because if you listen, they’ll talk. Kids aren’t as closed off as we think they are. They want to talk to us. They want to, you know, when I’m in my bedroom trying to relax, my son, he comes over to visit. He’ll just come in the room and just hug.

Because we always skip the communication. And it’s just as simple as saying, if you need to talk to me, don’t get upset at what they tell you. Not initially anyway, not unless it’s certain things. A lot of times kids fear our response to the things they have to say to us.

Right, right.

And even as adults, we temper and parse what we say and how we communicate because we live in a sense of fear.

And there’s nothing scarier than being a parent with a disabled or sick child because you’re always fearing. They’re at school, you’re wondering. Are they okay? But, you know, we have to overcome fear and, and, and fear is a bad thing. But bravery is not. Bravery is acting in the face of fear. So, I commend all the parents out there raising our special needs children because I’ve been there and I’m still doing it.

So, just be patient with yourself. Do not fear. Find support systems, or you can reach out to me at my non profit mental association. If we don’t have the resources or the capability to help you at the time, we can definitely find you somebody that can, because self care is important. You have to take time for yourself raising a special needs child.

You have to have time to unplug. You have to give yourself, or else you will burn out. And not all of us have the support system that we want and need, so we have to be on there too. There’s so many layers involved, so many.

I’m hearing you say that it’s okay for a parent to seek mental health help for themselves.

I advise it. I think any parent with a special needs child should be in some form of therapy just for the simple fact of keeping yourself going. Not saying everybody needs to be popping pills, but a therapist will help. A family therapist will help because you have to think about how to fix other tendrils of the family, other members of the family, but the parent, especially because at the end of the day, it’s all on you because your support system can flake on you in a minute.

So you have to be ready for that. If, if grandma want, they’re supposed to pick up little Johnny at three, but she got drunk at the casino. Well, then that’s on the parent and people don’t get that, you know, uh, so, but, uh, it’s, it’s, it’s. It’s been a journey with me raising myself and he’s my first lieutenant, my first born, and he’s going through challenges.

Now, um, the, the, the thing about raising a child with special needs is that they soon become a special needs adult. And you, you will run into a lot of arrested development. Uh, they may not be progressing as fast as their compatriots, not because of any lack of ability, but just because that mental illness.

It’s like trying to run with a broken leg, you know, and people don’t get that because, and that’s why I’m so passionate about, you know, dispelling the stigma around it, because once we do that, then you have people able to get the resources they need where it is an even playing field.

Well, this season I’ve been, the first two seasons, I did an icebreaker type of thing with my guests.

This year, what I’m doing is I’m having you give advice through repeating a phrase, and then you’ll repeat the phrase and finish it. Okay. Okay. Does that make sense? Yeah. All right. So I have two, two, two for you. So I’m going to read it whenever you can, and I can’t even hand it to you if you, if you want to read it.

But, but if you’ll look at the camera whenever you answer it so that, um, so that they know that you’re talking to them about this one, because this, this one, it isn’t for me. So the first one is one thing I wish people understood better about mental health is.

One thing that I wish people understood better about mental health is that it affects all of them.

Nobody did anything to bring that on themselves. You can’t pray it away. You can’t wish it away, nor can you act like it does not exist. It has to be treated and it has to be respected. It has to be discussed.

Excellent. All right, now the second one is a little bit longer, but you can reword it if you need to.

It’s in moments of fear or doubt, I remind myself that parenting a child with disabilities is also about.

In moments of fear or doubt, I always remember that raising a child with special needs is it’s about love. It’s about taking care of your child. It’s about being a parent. It’s about being a good member of society.

It’s about raising a child that even though they may have things that people may see as a deficit, that you can see in them what you want to instill to make sure that they don’t have to operate at a deficit. The love and concern and care that you can give them can help improve their chances of living the kind of life they want despite having a disability.

So it’s really about look.

Excellent. I like, I like both of those. So what else are you doing? We, um, well, first of all, you, you gave us the phone number, right? Do you have other contact methods? Do you have a website or

our website is under construction is going to be meta association. org. You can reach me at a 214 810 6518.

Um, and you can also email me at g brooks at meta association dot org. We also do fundraising. We have a cash app campaign right now. You can donate a dollar sign. Meta association. M. E. T. T. A. Cash app. We’ve got some programs going right now. I’m designing a course for young men to address mental and emotional health and things like chivalry and kind of give some coping skills.

Uh, I’m working on with the Terry Foundation in Lancaster, uh, Texas, uh, on some mentoring programs. Uh, we’ve done food drives before. Of course, I do my public speaking. We’ve been, uh, helping out in some things, uh, civically here in Dallas and in Memphis. So we got a lot of stuff going.

Nice.

Hopefully, I can help as many people as I possibly can this year.

And then you mentioned, um, the podcast.

Right. I have a podcast called Musings. It’s like a little pet project of mine. I’ll send you a link to it so you can link to it. But it’s just something I do, um, on my phone. Maybe if I have a thought for the day during a moment of prayer, introspection and meditation, I’ll speak on it.

And it’s usually something related to mental health because I always try to put myself at and make sure that I speak up as a person living behind the lens of having a mental illness. Otherwise, then that makes my message no different than anybody else’s. We all have. The only thing we have to offer is our testimony.

I’m just offering.

Excellent. Well, I love what you’re doing. I love how open you are about this. I really appreciate you being here and talking about this because I think we definitely need to talk more. It just needs to get there. And this season two, I’m I’ve put together a panel of experts that we’re gonna be bringing them in at different times.

Either through voice recordings or just short little video clips. And George has agreed to be part of that panel. So you’re going to be seeing him again. Um, you won’t know where or when, so just, just keep, keep, keep on watching and I’ll put in the show notes, the links to all of those and your phone number, everything too, so that, so anyone that’s listening can.

Can reach out, you know, you’re my best expert right now as far as being able to point them in the right direction. Well, thank you. I really appreciate you being here today.

Thank you. It’s been a fun, it’s been a pleasure. so much for having me.

Don’t forget to sign up for the Water Prairie newsletter for updates on what’s happening at Water Prairie, special promo codes available for our Etsy shop and updates on our Amazon bookshelf.

You can sign up at water prairie. com slash newsletter. Thanks for joining me today and I’ll see you next week.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Your Words Matter – Communication Help for ParentsShow Notes:Discover the keys to unlocking stronger parent-child bonds with seasoned coach Kathy Bowers on this episode of the Water Prairie Chronicles. Join us as Kathy shares over 40 years of expertise, offering practical strategies to enhance communication and relationships with your children. Don’t miss out—tune in to learn how to transform your family dynamics today!

Connect with Kathy:

Website: https://www.life-change-coaching.co.uk
INSTAGRAM: https://www.instagram.com/kathybowers50/
FACEBOOK: https://www.facebook.com/lifesoothe

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Meet Kathy Bowers, a parenting, teen, and life coach with over 40 years of hands-on experience working directly with parents and their children. With a passion for supporting families through every stage of parenting, Kathy specializes in addressing a wide range of parenting and behavior issues.

As the founder of Life Change Coaching, Kathy offers her expertise online, providing invaluable guidance to parents seeking to enhance their communication skills and strengthen their relationships with their children. Through personalized coaching packages, Kathy empowers parents to discover effective strategies for connecting with all of their children, fostering understanding and harmony within the family dynamic.

Additionally, Kathy extends her coaching services to individuals who are driven to achieve specific goals in their lives. Whether it’s navigating the challenges of parenthood or pursuing personal aspirations, Kathy offers a supportive and insightful approach to help clients overcome obstacles and reach their full potential.

Ready to begin your journey towards positive change? Book your free 30-minute exploratory call with Kathy through her website and take the first step towards building healthier, more fulfilling relationships with your children and yourself.

Episode #89: Expert Tips for Better Parent-Child Communication**Your Words Matter – Communication Help for Parents**###### (Recorded February 19, 2024)

Full Transcript of Interview:

Kathy: I believe that true communication means being 100 percent available for your child and to really listen to them and see them as individuals.

Tonya: Welcome to the Water Prairie Chronicles, a podcast created for special needs parents and those who want to support them. I’m your host, Tonya Wollum, and I’m glad you’re here.

In this episode, I’m chatting with Kathy Bowers about how to unlock a stronger bond with your child. Kathy is the founder of Life Change Coaching, where she provides guidance to parents seeking to enhance their communication skills and strengthen their relationships with their children. Today, she’ll be sharing practical strategies to help communication and relationships with your children.

If you have a little one who doesn’t listen or a moody teen who ignores you, Kathy has some tips to share that you may find enlightening. This episode is sponsored by the Water Prairie Etsy shop where you can find Tales and a Tote story kits for young children and printable storytelling journals and activity books to help encourage older children to enjoy writing their own stories.

Check out the shop at https://waterprairie.etsy.com and be sure to sign up for the Water Prairie newsletter for special Etsy promo codes. Now, let’s get back to the episode. Kathy, I appreciate you being with us today.

Thank you, Tonya. It’s a great pleasure to be here.

Kathy is a parenting, teen, and life coach, and I say it that way because it’s my understanding, she’s going to tell us more, but it’s my understanding that she works with both parents and teens separately and together, but then also does life coaching.

Am I completely off on that or do I have this correct?

Um, it, a little bit.

A little bit? Okay.

Um, yeah.

Clear, clear it up for me.

I, I do mentoring with the teens and the parents together online because obviously teens want to have their say and if there’s difficulties and the parents will obviously be there as well.

So we do like in the room scenario where I’m just making it sort of flow. And giving everyone the opportunity to listen to one another and to, um, express what they, they’re having, um, trouble with, you know, with between parent and teen and teen to parent. So that’s what I do. And then I work individually on online with parents, but not together parents, you know, individual parents because obviously.

Although you’re a parent, you’re two different human beings and you have your different viewpoints and things. And the last thing I want is a clash going on. So it’s up to the parents to decide if they want to split this. I offer six sessions. So it’s whether they want to split the six sessions into three or take six, six each is up to them really.

And, um, then with individuals, obviously I work with the individual online again, and that’s on around specific goals they have, they wish to achieve, whether it’s a personal development goal. Or something to do with maybe setting up a business or just, just anything really that comes into their head that they want to achieve.

So one of the things that stood out for me when you, when you first reached out was, um, when I checked out your website, you had a summary on there that said that you work with parents who are having communication and parenting difficulties with their children. And I was like, wow. And it sounds like from what you’re saying, how you’re, you’re working with them together.

And it’s a topic that we haven’t brought to the podcast before. And I think it really is important that we do look at communication. A lot of times we lean toward talking about, um, parents trying to communicate with the school, things like that. Um, and we may even talk about behavior sometimes with our children, but we haven’t broken it down to the communication itself.

And I think this is really important for us to, to dig into a little bit. And I’m, I’m really looking forward to hearing some of the information that you’re going to share with us. And, um, those that are listening, I’d love to hear your feedback as you start learning from this episode, even, um, let us know if you try out some of the things that we’re going to talk, talk about, and if you see any changes.

So when I, um, started thinking about communication, I, um, I was trying to think, you know, what, what have I heard to kind of get us started? And I came across the quote by Emma Thompson, those that may not be familiar with it. She wrote Sense and Sensibility, um, in 1995, I think is when that came out. And the quote that I saw from her was any problem, big or small within a family, always seems to start with bad communication.

Someone isn’t listening. And what I liked on that was how many times do we, especially as parents, you know, we have things we have to say. And, um, and Junior is watching TV or something, and he hears nothing that we say. And we say it three or four times, so we’re getting more heated, and they never heard a word of what we said.

So I thought maybe we’d launch with a quote to, to let us see that it isn’t just us, that sometimes there are others who recognize that communication can be a pretty big thing.

Well, I mean, communication is for everybody, adults included. You know, how we talk to one another. It’s not just children, but obviously when we’re a parent, we have to be specifically aware of how we communicate with our children.

90 percent of communication is our physical, you know, it’s not vocal, sorry, vocal, it’s our physical. well being and how we respond like that. It’s our features on our face. It’s whether we give eye contact or we don’t. And then it’s our voice, but it’s not just our words. It’s our tone of voice as well. So it’s all taken in.

So it’s a lot to actually really take in and realize. And as adults, I don’t think we realize how we respond to our children when things are annoying. You know, we don’t even have to open our mouths, the children will see, Oh, here they come.

Yeah. When I think too, you know, we’re talking about the parent child relationship in that one, but, um, but even mom and dad, how do we talk to each other?

And our children are absorbing all of that and watching, they’re, they’re learning their own communication skills as they observe all of this.

We’re meant to be offering guidance and it has to be positive guidance we’re giving them. And we do forget because children don’t stand up to our height, you know, we sometimes don’t even know they’re in the room sometimes, you know, and they’re absorbing it.

I mean, their brain, you know, they’re like a sponge. They want to get in. And it’s only when you suddenly see your children. mimicking you or making a, an expression or saying a word that you would say, you think, hold on a minute, this little person’s really picked it up. And it’s a famous one. So the swear words, you know, we don’t, this two year old or three year old comes out with a swear.

Oh, they’ve got it from school. Well, hold on. They don’t Yeah.

Right. Well, and, and how many times does the parent say, where did you learn that? And because you don’t necessarily see it in yourself, it’s, um, yeah, that’s, I’ve seen, I’ve seen that a lot of times as I, as I’ve just talked, talked with people in the community and the look of the parent’s face, whenever it happens, it’s,

it’s like, I’m embarrassed.

Well, a lot of times too, you know, we, we’re so careful of protecting our children with the media and, and what they’re exposed to, but we may forget that they’re exposed to us as well. And what, what are we showing to them? You’re right. With my children, I knew a lot of times when they were young, I was working with different groups of adults and they would be with me at times.

And so I needed to do the job that I was doing and finish the conversation with the parent or with someone else. And, um, And with my kids, you know, what they want, it’s now it’s, you know, they, they wanted to jump in. So we started what, what I always called the, the interrupt rule and they had to put their hand on my arm or my leg just to, to, to let me know they were there.

And then they knew in turn that I would stop when there was a moment to see what they wanted. So they didn’t have to wait for the whole adult conversation to end before I could pay attention to them. But that was something that I always required of them. But did I always do that for them if they were in the middle of something to give them that warning?

No, I didn’t. A lot of times I would expect them to jump right as soon as I’d say something. So we don’t always have that balance.

Yeah, this is what’s quite common with parents when, and I did quite a few sort of, uh, tests with my parents. I sort of said, it was quite funny, we had this um, day when they came in, when I was in the nursery, and I said, right, well, parents come in, and they went, okay.

So I said, now I’m going to sit you down at different tables. I think there’s four to each table. And I said, I’m going to give you some artwork, and I’m going to expect you to do it. Okay. So, alright, that’s fine. So, um, what they weren’t expecting, though, was, what I did was, I gave instructions to some of them, then I gave part instructions to others, like, by whispering, telling them what to do, and then to others, I didn’t give any instructions.

So, yeah. At least. bits of newspaper and things on the table. They didn’t have all the equipment like they might need. It’s, um, they were meant to be making a tree out of a newspaper. And so they needed the tree, the scissors and some sellotape or something on some of the tables. I didn’t give them the scissors or I didn’t put the tape out.

So they didn’t know. So it was quite funny. So anyway, I said, right. You’re going to be timed for this now get on and do it and then what I did as well Was I would come up to a parent and wouldn’t say anything and I just get hold of them and move them to another table or move them and sit them out and we did this and it was quite funny because they were very sort of disorientated.

They didn’t know what was going on and they hadn’t got a clue. Some of them were trying to do the tree quite well and then others were looking at the table of this to say what they doing trying to copy. Well then when we stopped it I said right now tell me how you felt and the hands were going up they said Well, I was completely lost.

I didn’t know what, what I was meant to be doing because you didn’t tell any of us on the table what we were meant to be, you know, building. And then someone else said, well, we didn’t have the equipment to do. You told us to do this, but we didn’t have the cellar table, the scissors. And there’s someone else said, well.

I got very upset because you took me away and I thought, what have I done? I’ve been, have I, she actually said, have I been naughty? And I said, these are things that you do to your children every day. You don’t explain or you jump in and you don’t give them time. You know, you, and one of the things you do, which is so common, I mean, I did it as well with my children.

You give an instruction, but you don’t give one instruction in the sentence. You give them four or five, you know, I want you to get your shoes on, put your coat there, do this. And then You don’t understand why your child is just not done it and they’re sitting there. You think they’re being, you know, argumentative or rude to you or defiant to you, but what they’re doing is you’ve told them something and they’re just trying to work out in their brain, right?

What’s, what do I need to do first? But then you’re shouting at them because they haven’t done it immediately. You know, you’re expecting it to be that instant done. And I like with parents, I’ve said to you. If I ask you to do something, we’re discussing something and I was to say to you, right, I want you to do this and this and then I shout, well, why haven’t you done it yet?

You know, how do you feel? And they say, well, I’d get angry because I can’t do, I couldn’t do it at that time. You know, who the hell do you think you are telling me to do it immediately? And I said, well, nothing is done immediately. You have to take it and absorb. You have to process it. On your instructions, you know, if it’s not clear in the first place, you’re lost.

Well, then you also have our children who can’t retain that many things at one time. And they, they know there were shoes somewhere in that, in that sentence, but that’s about it.

So you have to keep it simple. You know, a simple instruction is short and simple. Like go, go and get your shoes, go and get your coat.

You know, you’re telling them, it’s no good saying. Where are your shoes? And that’s it. They will think, well, where are my shoes? That’s not what you’re asking them. You might be asking them to go and put your shoes on, but you have to tell them what you want. It’s like, if you’re at work and your boss tells you to do something, they have to give you an instruction of what you need to do for your job to, you know, to do it.

You know, it, it’s one of those things that we, as you’re saying, if you put it into, Your own life, you understand it’s, you know, maybe, maybe even we need more time because we’re older now.

I’m not sure there are a lot of things inside our head because we’re thinking about where are the keys, which is why half the time we’re upset that they don’t have their shoes on yet, because we just found the keys now we’re ready to go and

They’ve, and they’ve lost the shoes. One shoe is under the bed.

When in the process, we probably ask them to help us find the keys because we assume that they must have moved them or something. So that kind of answers one of the questions I was going to ask you. What are some of the challenges that parents face when we’re trying to communicate with our kids? Um, that I think that’s, that’s probably, especially as young as some of our parents have toddlers, even those are very real things.

We’re trying to find where the shoe is. Yes. One’s upstairs, one’s downstairs. But what are some of the other challenges that parents might face when they’re talking to their kids? Maybe, maybe thinking about our older kids, you work with teens a lot.

It’s, it’s how, how you speak to your children and your, as I said, your body language and your tone.

And especially with teens, we’re inclined to come over as nagging them, you know, uh, or challenging them or putting your, it’s always, you Why haven’t you done this? Or where can you do it? Rather than actually asking, you know, can you come? I need some help here. Can you help me with something, you know, sort of, and you, and it’s a two way conversation, isn’t it?

That’s what you’re meant to be having, a two way conversation calmly and calmly. If you’re challenging it and your, uh, your voice sounds aggressive or it sounds sort of derogatory or, you know, speaking down to them, you’re going to get their back up. So you have to really, it’s like putting the thought that they have thought it rather than you’re telling them, but you have to be very sort of, you know, cunning in a way, I suppose, to sort of put the suggestion there, but then let them think that they’re thought of it and they’re doing it.

So it’s a question of, you know, your phrasing and your terminology is very important when you’re, when you’re communicating with teens.

As you’re, as you’re talking about that, I’m thinking of when my, my son, more than my daughter, um, he was one that would, well, he has ADHD. He has reasons that sometimes the, the teachers would misunderstand what he was doing.

And I would always challenge the teacher, instead of assuming what you think is happening, ask the question, what, what were you thinking? But not in the tone of voice of what were you thinking? But what, what was the reason behind what you just did? And, and I would challenge them because you’d be surprised what was really happening.

A lot of times it was totally opposite of what you assumed it was. And it really wasn’t a bad behavior that you were expecting it to be. It was actually a very thoughtful gesture. That went awry somewhere in the process of following through with it.

Yes. Yeah.

But, um, but that, I, and I think as parents sometimes we’ll do the same thing.

We, we respond quickly, assuming something that really isn’t there. And if we can hear what our kids are saying.

And that’s why you have to ask them, you ask them, you know, have they understood? Is there anything that they’re struggling with? Is there anything that you can help them do? make it easier for them to do whatever you’ve asked them to do.

So it’s this, it’s this gentle, supportive communication that you’re letting them know you’ve got their back. You’ve got their best interests at heart, you know, and, and you say to them, you know, I really care. I love you to bits and I want the best for you. So let me help you. But sometimes We get it wrong.

And that’s when we need to say, look, I’ve really messed up here. I’m so sorry. I shouldn’t have speaking, spoken to you like that. You know, that was totally out unnecessary and you didn’t deserve that. You know, even though I’m stressed and tired, that still doesn’t excuse the fact that you got the brunt of it, but you know, I’m sorry, but

Well, what, what better lesson can we show our children whenever we say that to them?

Because we, we all have moments of passion that are not. in tune with what it should be. And I mean, our kids have it to us, especially as they’re getting older and have those hormonal changes where they may snap back at us.

But also they might have a bad day at school. They might have a, a clash with a friend.

They might be thinking like, cause they’re, you know, so many different things going on. They might be, um, thinking about a girl or a boy or anxious about that. I mean, what surprises me nowadays, which When I was a teenager, I didn’t think like this at all. I’m thinking it must be, I don’t know whether it’s um, media, social media has anything to do with it, but the kids don’t just worry about maybe what’s going on for them at school or at home or if they get a, getting a girlfriend or a boyfriend.

They’re now worrying at a very tender age about will I, how will I earn enough money to live, to buy clothes, to buy a car. Will I be able to learn to drive a car? How will I, um, be able to earn enough to get married, if that’s what I want, and have a family, and raise a family, and they’ve got all these thoughts, and you’re thinking, God, you’re just teens, you haven’t even got any of that yet.

Why are you worrying about it? But they are. They really are worrying about all this stuff and you think you’re putting more stress on your shoulders of something that’s not happening maybe 10 years from, from now.

Yeah. That’s, that’s, that’s interesting that, that you are starting to see that more.

But I think also because they’re living in families who are struggling, maybe that’s what it is.

Mom and dad are struggling with finances to put, keep a roof over their head. We’ve got this thing with all the heating bills, haven’t we now? Well, you know the cost of living, you know, all that, putting food on your table. You hear it now. And the pet, the kids that are aware of it, mom and dad are thinking, well, if I put the heating money, you know, on the meter in the, for the heating, I might not have enough food.

And they see one of the parents not eating as much food and giving it to the kids. So it’s all this, it’s, it’s, it’s a horrible way, but they, they’re watching, like I was telling you, you know, and they’re, seeing this all and they’re seeing the parents struggle. And maybe that goes on. If they’re doing it, this is my mum and dad and they should know how to handle money and they’re older than me.

And they have, you know, they’ve been working for years and doing this. So if they’re struggling, what hope is there for me?

I want to, I want to get back a little bit to thinking of our, our audience where many of them have young children with disabilities and special needs, but they also have other children who don’t have disabilities or special needs. So, so everything we’re talking about is going to address someone within their family at some point along the line there.

Yeah, it’s vital. I mean, each, the parents are all individuals. Their children are individuals, you know, so they’re not. None of them are the same as the other one.

So you have to really get to know your children, whether they’ve got a disability or not. If they have a disability, then yes, you have to understand what that disability is and the impact it has on how they communicate, how they act. receive information and how they can respond to information. And if they’ve got a physical disability, how does that affect them?

And you know, movement or, or whatever, and pain and, and their responses, are they in pain? Do they get angry? Do they get frustration if they can’t vocalize? Because that’s quite common. Um, if they’ve got a hearing problem and you don’t necessarily know your child is deaf, or I’ve got something wrong that needs, you know, the grommets.

And, um, they, if they can’t hear what you’re saying, they’re getting frustrated. and they’re kicking out, you think, Oh, what’s going on here? But you have to look deeper. But if you know your child, you know, if you really observe and look and monitor, you have to look for what they’re not saying as well as verbally, how they’re communicating.

And so every child is different. And you’ve got to obviously consider that not only their personalities, but their age and their ability. So you don’t have a full grown conversation. You can have a good conversation with a teenager, but you can’t do that with a two year old or a three year old. They’re going, what?

Because they’re short, they’ve got, attention span is so like, a couple of minutes and that’s it. They’re going, you know, it’s like, what?

Right.

So you’re, you’re wasting your time and you’re just getting worn out. So you have to really, really, really, Make sure that you tone your conversations, your communication, always be present when you’re talking to them, always show that you’re listening.

This is what we talk about active listening, which is really difficult to do, but it’s emptying your head of anything else, any of that clutter talking, because when, for example, if I’m talking to you, you’ll be, you might be in your head thinking, well, I’m going to, I’m thinking about this next answer. I’m going to ask Kathy.

And so you’re not actually taking a hundred percent of what I’m saying. And we do this all the time. And the, and when I was learning to do my coaching, the coach said, no, you’re not listening a hundred percent, Kathy. I said, what? He said, you have to empty that all out. And you have to actually hear 100 percent what that person’s saying, and don’t come in to finish their sentence, or don’t come in because and give them a bit of space, because they might not have finished what you think they’ve finished, you know.

Sorry. Might not have finished what you thought they’d said and, um, therefore, you’re cutting off something which could have been continued. So it’s vital to do that and, you know, to really be aware, but also to not involve your child. Don’t treat your child like a mini adult. Don’t treat them like your friend.

I’ve had so many parents say, but I don’t want to do this with them. I don’t want to tell them off because I want them to love me. I want them to like me or I see them as my friend. Yeah. So, you know, it’s, it’s vital that you Really make sure that you don’t keep any adult conversation. You keep it away from your children, especially if you’re going through, um, well, anything could be arguments, uh, financial problems, breakup, relationship breakups.

You don’t want them to be piggy in the middle. You don’t want them to hear things because it’s frightening and you don’t want them to feel that they have to choose between mum or dad or, you know, two mums or two dads because They’re your kids. They’re not into all this stuff. They just love you, both of you, and that’s all they want.

But it’s so easy for us adults. We forget we might be on the phone to someone, talking and slagging off the other person, and our child’s right there hearing everything we’re saying. And that’s, you know, so we have to really think about We don’t want negative communication in any form of way. We have to be positive a hundred percent and same with our guidance, how we offer them, it has to be a hundred percent.

You mentioned active listening, the, um, and earlier you were talking about how we speak. We communicate with more than just our words, with our facial expressions, with our body expressions and all. And I’m, I’m just as guilty as the next person where if I’m in the middle of something and someone from the family walks in while I’m working on it, I may not hear everything that they’re saying.

I try to catch on to as much as I can, but my brain is, even if I turn my back on what I’m working on, my brain is still there and it’s hard to pull the plug sometimes, but with active listening, my I’ve always heard it to be, you know, repeating back some of the things to show that you are engaged with it.

Are there ways that our body language also is active listening to, are there?

Well, yes, because it’s how we’re open. I mean, it’s like if we’re sitting there and we’re not, and we’re all tight or we’re not looking, you know, especially your eye contact, you have to give up. If you’re giving eye contact, they’re showing you, you’re seeing that person, you’re saying, I’m seeing you, I’m listening.

And then you say to them, Uh, either repeat back or you can say, am I right in understanding that you have, you’ve said this? Have I heard this correctly? So you ask them, because it’s always good to check in, because You might have interpreted it wrongly and that’s how arguments and fights and sulks start because Someone said something and then you’ve interpreted it completely different So if you check in with them rather than they get like, oh, they’ve said that check in first because then they’ll say no It didn’t mean that this is what I meant because again It’s your frame of mind how you’re feeling at that particular time of the day You might be over sensitive and you just take something you think that’s a criticism and that person might not be You wanting to criticize you.

I might best be giving you a suggestion or something, but in that form of the way, you’ve just taken it that particular time as a criticism.

So we spoke about how we don’t want our children to, to hear those adult conversations because they’re not, they’re not part of that. They’re not ready for those where they really should not be part of that, that conversation.

But what, what about when we’re communicating with our children and, and. In all honesty, I think every parent at some point has had a harsher word. They may not yell, but they may have a sterner word or something that they meant to be. It may not have, the situation may not have warranted that reaction that they had.

And I say all the time that, that words carry a lot of weight. So as we’re speaking to our children and speaking with our children, how can we. Help our children’s self esteem and their wellbeing be more positive. I mean, yes, we can always say, say positive, good things, but that’s not what a parent’s role is.

Sometimes we do have to be negative in helping to correct. So how can we have a better balance?

Well, what you should do is every day, see something that the child has done. It can be really small and you put, you put that as. I’ve seen you’ve really been helpful. You know, I didn’t need to call you down two or three times to get out of bed to come for breakfast.

You, you did that yourself or you, you remembered to go and clean your teeth, you know, things like that. Or you’ve been, you’re, you’ve been on time so that you’re not going to miss your school bus, you know, you’re leaving the house. So really appreciate and say that. And then also things like, I really You really helped me carrying out that shopping out of the car because there was a lot of shopping.

And I You just saw that I needed that help, or you held the door open for me. And it’s so nice because everyone, adults as well, if someone gives you, like you’re saying, positive praise, thank you, and using the manners and everything, you want to respond. It may, it lifts you up, it brightens you up, it does your self esteem.

But if you’ve got someone constantly pulling you down, picking, picking you to bits all the time, or Not saying anything. That’s just as bad. You get some families where The parents do not say anything. They don’t reward them. They just it’s a blank, you know, and that could be to do with mental health. It could be lots of different things, you know, but that pulls your self esteem down.

You don’t have to. Have that, you know, you don’t build up your self esteem when someone’s doing that because you’re not being seen as a complete person. You’re not being seen holistically, you know, and it’s so important for parents to really see their children. In all areas, you don’t see just the bad behavior because if you do, you can think, well, okay, this bad behavior is here, but why is that happening?

Go back and see what’s going on. You know, if they’re little, they’re not, might not be able to vocalize how they’re feeling because I’m got the words. So they, they’ll kick off, you know, and you get lots of little ones who want their parents to play and they come with a toy and they’re playing and This is sort of a B for me.

Lots, lots of parents seem to think because they’re children, little ones can play quite contentedly with their toys. They don’t think they need to get on their hands and knees and play with their children. They think, leave it to them, but what you’re helping them, you’re helping them with their language, you know, conversing, their understanding, you’re talking about colors, shape, you know, so many different ways, and you’re having fun with them, you’re making them laugh, and making them see that you really are interested in what they’re doing, and if you’ve got a little baby, You know, he wants to come up and he’s got a toy and wants you to play and you’re on the phone like this and you’re paying no attention, you go, hmm, fine, and you don’t give any, and the baby might come along and whack you.

I’ve seen this with mums I’ve been with, you know, whack you with a toy, not hard, but enough. And the parent goes, well, why have you done that? And I said, Well, you’ve been on your phone, your child’s been trying to get you to engage with this toy, and it wasn’t a hard whack, but they’re just trying to get your attention to say it.

But you’ve got some children If you do not respond, they withdraw into themselves, and then the parents say, Oh, so and so is a very good boy, he never asks for anything. No, because he’s learnt to self soothe and do anything. So, you have to be mindful if that child is so quiet. Why are they like that? And then you get the other ones who’ve learned the only way they get your attention is if they whack you with something or hit their sibling.

And in a way you’re rewarding their bad behavior by your responding, you know, To it and they’re thinking, well, I’m getting something from you might not be the right thing, but I’m getting something from you. And then you have these households where everyone’s screaming at each other. You know, there are different levels of the thing.

Come down here. It’s just easier just to go up and say, can you come and help me? You know, And it starts from us adults doing it, but we’re the ones that are screaming most of the time.

So before we get to the end here, cause I’m looking at our time, we’ve talked about some of this, but are there any other practical tips or exercises that parents can incorporate?

You’ve given us a lot as we’ve gone through here, but is there anything else that you can think of that we didn’t talk about?

The first thing that parents need to look at is what’s happening for them first. What is getting in the way that they aren’t necessarily being able to give a hundred percent attention to their children and be available.

And what’s really common is most of us work now, whether we work at home, we work part time, full time, or we go into the office or do another job. If. We’re not happy in our job, which most of us, I mean, let’s face it. Most of us go to work because we need to pay for a mortgage, pay all the bills and put food on the table.

And if we’re lucky, have a car and go on a holiday, you know, and treat, but not many of us say I’ve got a great job. I love my job, but we’ve got bosses that bully us. We’ve got bosses that see you, see you working and doing well, so they’ll give you more stuff, more work, and you’ll get stressed. Now, stress is a good thing if you’re doing a small amount, you know, you’ve got a project.

And you think this is going to be a four or five week stress, but you’re there because you’ve got the energy and your stress is driving you to do this and you’re coming up with these ideas. That’s fine. But when you get the other form of stress, it just builds up on you and you’re, overloaded, you’re exhausted, you can’t sleep, you can’t do your job work, you’re constantly, constantly, your head’s getting clouded up with all this stuff.

And you come home, and you’re taking your work home, because you think if I don’t do this, I might get the sack or whatever. And then you’re taking it in the evening, which impacts on how you see your kids and how you engage with your kids, because your moods are all over the place. And then on the weekend, you probably find you’re doing it.

And you’ve got to say to your boss, Enough’s enough. You know, be polite. Just say, The amount of work you’re giving me now I can manage, I can complete. Perfect. But if you give me something else, it’s too much and it will affect the work that I’m doing well. So let me do this piece of work first. And if they’re not willing to listen, then you’ll have to either go to a union or go to the next person above.

This is my contract. If your contract says you work Monday to Friday and you don’t work nights and you don’t work weekends or, you know, evenings, then you have to stick by it because the most important thing is your mental health, your physical health, which will impact your mental health. on your whole relationship with your partner and your children.

So you have to take care of that first because family life is the most important thing. Your kids are your number one priority. You have to make sure that they are always first. And don’t beat yourself up about your parenting. Learn from your mistakes. Try not to repeat them again. If you feel you need help, you know, sorting out your own problems.

Go to your GP if it’s mental health or wherever it is, you know, first to get, get some help and support. There’s so many agencies out there that will help you. Make sure that you’re available for your children. You’re consistent, a hundred percent consistent with what you do and you have your boundaries and your routines in place and just enjoy being parents and, you know, Know your kids are the most wonderful, best ever thing you could ever have in your life.

I agree. That’s the one we were talking earlier. That was, that was what I kept thinking of when you’re talking about the little one hitting mom with the toy to get the attention. It’s like, get on the floor and play. If you can’t get on the floor, bring them up to the sofa with you or something. Well, this, this season, we’re, this is season three now.

I have added something in that we’re going to do, um, and I’m not sure what I’m going to call this, if it’s going to be advice tags or what. But, um, But I have three statements that I’m going to read and have you repeat what I say and add an ending to it. The first one is short and easy. So it’s, I believe that true communication means, and then you’ll repeat that and finish the sentence with that. Okay?

I believe that true communication means being a hundred percent available for your child. And to really listen to them and see them as individuals.

Ooh, I like that. Okay. The second one, a memorable conversation I’ve had with my child. Taught me

A memorable conversation I’ve had with my child or my children.

Taught me that I have to be more patient, and more resilient to my own, what, what’s going on for myself personally, that I mustn’t have that impact on them. And that was when I was going through a divorce and it was really hard. It was hard for them and it was hard for me.

Our children teach us so much, don’t, don’t, don’t they, they, they, they’re good reflections for us at times.

All right. So this last one is a long one. So I sent you that one in, in one of the emails, because I knew it was gonna be hard to remember it all. So the most effective way I found to connect with my child through communication is

The most effective way I found to communicate with my child is through play to start off with when they were little, and then continuing that with board games and encouraging their, hobbies and their enthusiasm and going on.

So when they’re teenagers, doing something with them, really being there to support whatever they want to try. They might try something for a little while and then they think, I don’t want to do that anymore. Well, fine. You’ve tried it. Try something else.

Kathy, what is the best way for my listeners to get in touch with you if they want to find out more about what you do or if they wanted to work with you?

Um, on my website, my website’s called life-change-coaching.co.uk. And on there I, you can, there’s a link that you can click, which I offer a free 30 minute exploratory session on Zoom for you just to tell me what’s going on for you. What’s the main issue that you’re struggling with and you need help with and I’ll tell you about me and what I do in the packages I offer And see if coaching’s right for you.

Sometimes it’s not right for everybody, but most of the time it is and I’m available just to help help and talk out, you know and give you some suggestions

Are you active on any social media platforms?

I’m on Facebook and LinkedIn and Instagram.

Okay, I can link all of her contact and the show notes. So if you’re listening, check the, you’ll have to go to the website that goes with the, the audio because lately they haven’t been posting the notes for me, but it will link the website there.

And if you’re on YouTube, it’ll be in the description of the video.

Yes. Okay.

So, well, Kathy, thank you for the wealth of information that you’ve shared with us. This is, this has been fun. I’ve enjoyed it. I hope that I was listening actively for you and the pressure was on.

I really appreciate it. And I hope it’s been useful to your listeners as well. I hope I’ve been able to help.

I’d love to hear some feedback from those of you that are listening. If you found a piece that, that, that you found valuable and, and want to try out, leave us a note in the comments or send us an email. Don’t forget to sign up for the Water Prairie newsletter for updates on what’s happening at Water Prairie, special promo codes available for our Etsy shop and updates on our Amazon bookshelf.

You can sign up at https://waterprairie.com/newsletter. Thanks for joining me today and I’ll see you next week.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Show Notes:Welcome to Season 3 of the Water Prairie Chronicles, your go-to podcast for all things related to parenting children with special needs! Join host Tonya Wollum as she kicks off the new season with an exciting solo episode, sharing updates, announcements, and personal projects that will make this season one to remember. From introducing an Expert Panel to unveiling new products in the Water Prairie Etsy shop, Tonya dives into all the details you won’t want to miss. Plus, get a sneak peek at what’s coming up in future episodes, including special guests and insightful discussions. Don’t miss out—hit that subscribe button and join us on this journey through the beautiful yet challenging landscape of special needs parenting!

Visit our Etsy Shop or Amazon Page!

https://waterprairie.etsy.com
https://amzn.to/3SYCfsQ
Goodnight Moon Story Kit is available in the Tales in a Tote series for toddlers and preschoolers.
The NEW Storytelling Journals and Activity Books will be posting over the next few weeks in both paperback books and printable digital downloads.
Check back often to see what else shows up. Shirts, hoodies, coffee mugs, ??? Lots of options to consider!

Sign up for the newsletter!

https://waterprairie.com/newsletter
Get updates on the podcast and PROMO codes for the Etsy shop!

Support our podcast and help us share more incredible stories by making a donation at Buy Me A Coffee.

Your contribution makes a significant impact in bringing these stories to light. Thank you for your support!
https://BuyMeACoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license.

https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

**Which was our most popular episode of Season 2?**Show Notes: Join us for the Season 2 finale of the Water Prairie Chronicles podcast, where we reflect on the most captivating episodes of the season and share some thrilling announcements for what’s to come in Season 3!

In this solo episode, Tonya takes you on a journey through the highlights of Season 2, exploring the episodes that resonated most with our incredible listeners. From insightful discussions on language processing in children to heartwarming conversations about parenting autistic children and the transformative power of literature, we revisit the moments that made this season truly special. But that’s not all!

We’re excited to announce the grand opening of the Water Prairie Etsy shop, where you can find a treasure trove of enchanting storytelling journals, tactile Tales in a Tote story kits perfect for young children, and soon-to-be-released parenting shirts and coffee mugs to carry the magic of Water Prairie with you wherever you go. Plus, Tonya shares news of recent features on podcasts and educational summits, hinting at even more exciting opportunities to connect and learn in the upcoming season.

Don’t miss this heartfelt finale as we bid farewell to Season 2 and eagerly anticipate the adventures awaiting us in Season 3.

Be sure to sign up for our newsletter for exclusive updates and discounts on our Etsy shop, and don’t forget to leave a review and subscribe on Apple Podcasts and YouTube to stay connected with the Water Prairie community.

Thank you for being part of this extraordinary journey. The magic of storytelling awaits us all in Season 3 of the Water Prairie Chronicles!

Sign up for the Parenting the Intensity RETREAT!

Understand what’s going on with your kids and stay calm during the meltdowns.
A 3-Day FREE virtual event for parents of emotionally intense kids.
February 21-23, 2024
https://waterprairie–familymoments.thrivecart.com/parenting-the-intensity-retreat-57/
This link is an affiliate link, and Water Prairie may receive funds if you opt in to the paid All Access Pass for this retreat.

Sign up for the newsletter!

https://waterprairie.com/newsletter
Get updates on the podcast and PROMO codes for the Etsy shop!
Goodnight Moon Story Kit is available now, and the NEW Storytelling Journals will be posting over the next few weeks in both spiral notebooks and digital downloads.
Check back often to see what else shows up. Shirts, hoodies, coffee mugs, ??? Lots of options to consider!

Support our podcast and help us share more incredible stories by making a donation at Buy Me A Coffee.

Your contribution makes a significant impact in bringing these stories to light. Thank you for your support!
https://BuyMeACoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license.

https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/
Sound Effect from https://pixabay.com/sound-effects

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Language Impairment and Speech Delays in ChildrenShow Notes: Dive into a captivating interview with Katie Selby, known as the “Girl Who Was Not College Material,” as she shares her triumphant journey through language impairment. This episode explores the challenges and victories associated with language development in children, offering valuable insights into speech delay in toddlers. Join us in navigating the world of parenting a non-verbal child and discovering the importance of early intervention for speech issues.

Katie’s story unveils the realities of parenting a child with language difficulties, providing a roadmap for supporting non-verbal preschoolers. Learn effective strategies for communicating with non-verbal children and witness the transformative power of speech therapy success. The conversation delves into the nuances of raising a child with language impairment, celebrating the unique communication paths these children embark on.

Explore the interview to gain a profound understanding of speech disorders in children and the impact of early language intervention. Discover the keys to building confidence in non-verbal kids and unlocking their untapped potential. This discussion is a beacon of hope for parents navigating the complexities of speech-delayed children, emphasizing the importance of celebrating each child’s unique communication journey.

Connect with Katie:

Email: katie.selby11[@]gmail.com
INSTAGRAM: https://www.instagram.com/collegematerialgirl/
FACEBOOK: https://www.facebook.com/profile.php?id=100047780778306

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Katie Selby is a remarkable individual who has triumphed over adversity. Diagnosed with a language impairment at age three and a learning disability at five, Katie faced discouragement from educators who doubted her college potential. Undeterred, she pursued higher education and became a fierce advocate for her own educational needs.

With a college degree in hand, Katie embarked on a career as a para-educator, working tirelessly to support students with disabilities in school and home settings. Her dedication to helping these students achieve independence is truly inspiring.

Katie’s unique social circle consists of friends who, like her, have experienced life with disabilities. She’s actively shared her story through blog articles and social media, and is in the process of writing a book about her life. Katie’s journey is a testament to determination and serves as a beacon of hope for others facing similar challenges. She aspires to continue motivational speaking and making a difference in the lives of those with disabilities.

Episode #86: Language Impairment and the Path to Victory*Language Impairment and Speech Delays in Children*###### (Recorded October 18, 2023)

Full Transcript of Interview:

Ep 86 audio draft

Tonya: Well, Katie, welcome to Water Prairie.

Katie: Thank you for having me.

Today we’re going to be talking about a topic that we haven’t brought to the podcast before, and that is about some language issues. And we have talked about language before, and you may recall some of those, but today’s a little bit different.

So, so stay with us and, um, you’ll be interested to hear Katie’s full story as we, uh, uh, Um, unravel that a little bit, but if you are new to the podcast, you don’t know this yet, but if you have been listening, you’ll know that we’ve been playing a game with each of our guests this season, and it’s the game of two truths and a lie.

And I’ve asked Katie if she’d be willing to play, and she has agreed to bring some facts or pseudo facts, as you might want to say, to share with us. And your job as a listener is to decide which of the three that she’s going to tell you about. are actually a lie. And, um, and you can post, if you’re watching this on YouTube, you can post in the comments what your answer would be.

If you are listening to it on the audio or reading on the website, even you can go to Instagram or to Twitter and find the posts that match this release and leave your, your comments there. And a week after we release this, we’ll come back and give you the correct answer. So you can check and see if you’re right or not.

So Katie, what are your facts that you want to share with us?

I would like to share that I had a meet and greet with Taylor Swift. My family had a garden shop named after me called Katie’s Garden Shop, and my husband and I went on a honeymoon to Canada.

All right. So we have some interesting facts here.

They don’t even have anything to do with each other, which makes it even more interesting, I think. So, um, so I’m going to be curious to see what the, which one is the lie. Um, listeners don’t leave the platform, listen to the full interview and then go and leave yours. But if you’re watching on YouTube, you can, you can type this in while you’re listening.

Well, today, like I said, we’re going to be talking about a topic that deals with language and Katie reached out and had an interesting story and I thought that you as listeners might. Enjoy hearing her story because it’s a little bit different, but it may be something that you know about or you may know someone else who is, is working with a child who is in the same situation.

So that would be a value for all of us to hear this. So, um, language impairment is how you described it to me, Katie. Can you tell us what a language impairment is?

A language impairment is where a Like when I was growing up, I had, um, a difficult time coming up and finding the right words to communicate with, with people.

So were you able to, um, like, did you go through the babbling stage as an infant and start saying like mama and dada and during those typical times or was that later for you?

That was much, much later for me. I was diagnosed with a language impairment at the age of three. And Okay. When I was three years old, I was nonverbal and I only showed communication with My body language, I would jump up and down when I was excited and when I was frustrated, I would lunge to the ground, almost hitting my head on on concrete and that would happen at a lot of places in the community.

Wow. So, I, I’ve been looking a little bit into this since you and I first communicated with each other. And, um, I noticed when I was looking through that there is today, and I know a lot of parents are listening. A lot of you are going through diagnosis times right now and you may see terminology that is changing.

And so in some of our diagnoses, terminology does change over the years. Um, but Katie, one thing that I came across, I thought I wanted to ask you about, um, developmental language disorder. Today, that is. a diagnosis. Do you think that would have been the category for you if you were being diagnosed today?

Probably, yes. Okay, so parents if you’re listening and you’re not hearing the same words here, if you’re hearing developmental language disorder, and Katie you can correct me if I’m wrong, I think that might also be specific language impairment, a language delay, or developmental dysphagia. Is that the right word?

I think so. Would all those be in that same category do you think? I think so. I think they would. Yeah, so it’s, um, so like, um, our autistic diagnoses that are coming in, sometimes you’ll hear, um, depending on when you’re diagnosed, different words are being used, um, to describe the same thing. So, so parents, if you’ve heard any of these or you’re looking into this, um, tune in because, because you’re going to be hearing some more that, that, that should, should help you a little bit to understand more of, of Some ideas of how, how to communicate with your child or to help your child be able to communicate with you too.

Another question I had for you too, Katie, was back at the beginning of this season, this is our second season on the podcast. So back in January, February of, of this year, we spoke with Lenora Edwards about the differences between analytic and gestalt language processors. And when I was looking into what you were talking about, you weren’t speaking at all until three, is that correct?

Or, or you still weren’t speaking at three?

I still wasn’t speaking at three. And when I was four years old, I would speak in six to seven word. Utterances, and then I fully communicated at five years of age and said my first full sentence. And to this day, I wish I knew what that first full sentence was.

I’m sure.

Me too.

Are you familiar with the difference between analytic and gestalt language processors?

No, I’m, I am not.

Okay, so an analytic, and this is what I’ve taken from Lenore and some of the reading that I’ve done, an analytic processor, um, I, I was one of those. As a, as a young infant, I would babble.

I made different sounds, just kind of playing with sounds. And then I started making some, some little short sounds that related to an object or an action and started learning those. Then those became words, and so for a while you say one word that means something like go or, or hungry even, things like that.

Um, and then you may have a two word and then a three word sentence that are slowly building up. So you’re building from those sounds into words, into phrases, into sentences. A Gestalt language processor is listening and they’re seeing. The, the full package. So they’re hearing phrases, they’re hearing sentences, and they’re taking it all in, and they’re seeing the behavior that goes with it, and they’re understanding that this phrase goes with this.

This phrase goes with this. And it’s not the same, but I kind of equate it to when I’ve tried to earn, to learn a foreign language. And I’ve been in other countries. I kind of see what they’re doing and what they’re saying. I may not know what the words mean, but I know that every time they do this, they say this, so this must mean something with the situation.

And then I just kind of echo what I heard because it fit the situation. And our children sometimes that are Gestalt language processors, they’ll go into that. And I know I always say it wrong, echolalia.

Echolalia.

And so that’s, that’s part of that process where they go from hearing it and repeating it to, to into that echo time.

And then they slowly take that big package and they break it down and they eventually get to the point where they also understand all the words and the sentences and the grammar and all. But they, they come from like the big piece down to the small pieces where the analytics starts with a small piece and builds it up to the bigger one.

And so I wondered, especially when you said that, that you were saying like six, six, six word phrases, um, were you, were you echoing those or were you repeating them? Do you, do you know?

I don’t even, I don’t even, don’t even know.

I mean, you, you, you weren’t old enough to remember it yourself. I don’t know if anyone had ever mentioned it to you, but it did maybe made me wonder, you know, maybe you were a gestalt language processor and you were just absorbing all that stuff during those years.

And then it, then it, because, because obviously today. It has not made a difference in who you are as an adult. I mean, it has because it’s affected who you are, but you’re able to communicate with me here. This, this isn’t a problem with, with this. Um, so, so parents are listening. I may have just totally confused everyone, but, but I was curious how all this, because I find it just fascinating how it all kind of ties together.

And each of these little beings that are coming into the world, they come with their own little wiring of how they’re going to, to navigate the world. And, um, and it’s interesting to me that You know, with, with help and support, they, they can get there and they can, they can be independent adults who are out there in the world making a difference.

But as, as parents, sometimes it gets a little frustrating because you don’t know how to help them get there. And um, and that’s part of this interview too, listeners, because Katie’s work, you’re going to hear a little bit more about what she’s doing now. She’s actually making a difference in those kids now.

Um, but let’s, let’s go back. So, you found out first, or your parents found out, that you had a language impairment by the time you were three. Is that right? Am I following that right? Yes. So were they buying you toys with sounds when you were two? Like, like, so, so, so many parents seem to do if they aren’t talking by the time they’re two.

No.

I always, I always laugh because I, I hear of well meaning grandparents giving at Christmas. If they’re not talking by the time 18 to 24 months that they, they need all of these noisy toys so that they, they can hear language all the time. So as you were getting older, were you diagnosed with any other disabilities or impairments?

Yes. At the age of five years old, I was diagnosed with learning disabilities in written expression, math, and reading comprehension.

So was that dysgraphia or dyscalculia or was it a different type of?

Um, they, they just called it, um, what, like written expression, um, math and reading comprehension. They didn’t call it label anything.

Yeah. I don’t think it always needs a name that’s in there. You kind of, so some, I think with those, like it does help. For students who have those specific diagnosis, I think it helps because the way that the brain is twisting things around sometimes it may help knowing how to attack it. But, um, but you’re right.

It really doesn’t, doesn’t make a big difference there. How did you learn? Writing, reading, I mean, your basic skills in school were all being affected by this.

Mm hmm. It was, it was challenging. I, um, had lots of support with the special education system growing up.

Did you, um. Now, you’re, you’re younger than I am, so I don’t know what, what your schooling was like.

So I’m going to just ask, were you in a mainstream class or were you, were you pulled out for services or were you in a, uh, a special ed class only?

Well, when I was three years old, I was in a language. preschool classroom setting. And then when I got to kindergarten, I was in a self contained class with nine to 10 students and pulled out for, um, other services.

Such as OT and resource and speech. And then when I was in first grade, they realized that I had some potential. So they went ahead and had me mainstreamed for a little bit of. My time in first grade, and then I was fully mainstreamed when I was in second grade and was pulled out for related services.

Okay. Yeah. So my, my children and those are listening, you’ve, you’ve, you’ve heard me talk about the kids through, through different interviews. Um, they always had, um, Push in services for theirs. Um, little, little different. My daughter is visually impaired, so her teachers would come in to her. She would be pulled out at times for different instruction, but she had the support in the classroom and then my son as well.

He was pulled out at times in those in those elementary years and then as he got older, um, it would just be as he needed. He might have a couple of days a week where he was pulled out, but he was mainly in the classroom and able to keep going. Um, so parents, every school system is going to be different.

Every school is going to be different in how they address that for your child. And, um, and we’ve talked about IEPs before and 504 plans and all. You just want to be listening to, um, to what the school has and how they’re, how they’re there to support. And so it may not always look the same, even from year to year.

But, um, but the main thing is that your child is getting that, that, that support that they need so they can continue moving forward. Um, So Katie, one of the things that, that stood out for me, and we’re going to talk about this whenever we, we talk about your contact information later, but one of your, um, social media accounts is called Girl Not College Material.

Can you tell me a specific experience or memory, um, about when you were told that you weren’t college material because of the language?

Sure. Um, I was told. In high school when I was transitioning and figuring out what I wanted to do after I graduated. Um, I had a. Guidance counselor tell me that maybe I should just get a job as a childcare worker and not try going to college.

And then I’ve also had many people in my, in my life going through college tell me the same thing.

We had another guest on who had the same situation and she actually is working in the same field as you now. Um, and I, I, I love hearing the stories because I want our parents to hear that you, you don’t have to accept no.

You know, it’s, and in your case. How, how, how early did you know that, that you wanted to be a teacher?

Oh, I’ve known I was, I knew I wanted to be a teacher or something like a teacher, like a para educator. Um, when I, when I was growing up.

So you, you had the passion to, to, to not necessarily let them squash that for you.

Um, but you had some challenges cause you were, I’m assuming that you were working with some form of special education all the way through school. Yes. All the way through school. Did you have any teachers who were really supportive and encouraging of you?

Yes. I did have some teachers in high school who were really supportive and encouraging of me.

My, Um, special education teacher and when I was in high school, um, I took a class within the class, meaning I had a special education teacher and a general education teacher in the class at the same time and the special education teacher would support the people with disabilities in that class. I would always go to her to ask for support and questions. Well, one day she told me to ask my teacher the questions and she pulled me out of my shell and, um, got me to self advocate and I wouldn’t be where I’m at today without her and without my other high school.

I, I love hearing that because so many times we, we hear the stories of the negative and, and my, my own children have had enough, enough negative there.

And we remember those negative things you, you’ve named your account because of that negative statement, but, but you’ve also named it because you proved them wrong, which was even better.

Yes.

I love it whenever we could remember the positives that were there to, to, to help us get, get through it as well.

Um, so you had the teachers that were there. What were some of the other, um, strategies and resources that helped you overcome your language impairment? Well, especially when you got out of high school and into higher education, what were some of those strategies and resources that were there for you?

I, um, utilized the Access Office Counselor at the, at the community college I went to, and then.

and, Um, I as well utilized my teachers and professor or professors at Maryville University. When I started at Maryville University, I went ahead and, um, used their disability services office and then realized after that year, like I can probably get more support from my teachers instead.

Did you, did you stay connected with the disability resource office?

Yes. Um, I stay connected with the disability office at the community college, yes, but not as much in, um, at Maryville.

The reason I ask that is because both of my kids are in college right now and they both work with their disability services office, but they, they have to work with all their teachers specifically because that’s who’s implementing any of the accommodations that they have.

But they do have accommodations for extended time for separate setting and all. And if they didn’t have the accommodation form at each of their colleges, their teachers couldn’t give them those accommodations. So did you not have to, like, were your teachers able to give you what you needed without you having to have the official document from disability services?

Well, at the beginning, when I was at Merrimack Community College in St. Louis, I utilized the ACCESS office and took tests and stuff out of class, especially math and, um, other classes that were more challenging than the classes I took at Maryville University because the classes I took at Maryville University were in my field and I, and I just felt more comfortable with, with those classes and just stayed and did the tests and, and everything in class if there were tests.

Okay. So, yeah, because, because if you didn’t need to use extended time or separate setting, then, then you’re right. They’re really, you, you, you probably could just work things out with your instructors and you could always have gone back if you had an instructor who would, would not work with you with that.

Um, yeah, I hadn’t, I hadn’t thought about that cause, cause both of mine, they, they do have some specific. Um, situations where they need that and it makes it easier for them being able to talk to their teachers if they’ve already had the document come through ahead of time. Now how it’s implemented is different from teacher to teacher because, but they, but they, they know at least that they have permission to, to make those adjustments if they need to.

So I, I, and I’m just curious on this one because just because my kids are in college right now, did you get an associate’s degree first when you were at the community college before you went to, to your four year college?

Yes, I went ahead and got an associate’s degree in early childhood education. And then after that, I knew I wasn’t done.

So then I took the more class, harder classes that I needed to transfer to Maryville University.

Would you recommend students who are facing learning challenges to take the community college route before a four-year college?

Yes. Yes, I would do that, um, just a smaller setting and, and, um, and I was able to take like nine credit hours instead of the full 12.

Oh, nice.

Mm. Yes.

When, when you got to the four-year college, did you, did you keep taking nine credits or did you move up to 12 at that point?

I moved up to 12 at that point because there were more classes in, in my field. The first year I went to Maryville, I took a. anatomy and physiology class and a psychology class and just focused on that because science has always been difficult for me. And then after that semester, I then took the full. for credit, the full load with my other classes.

The gen ed are the hardest, I think, because they’re not always in your interest area. So there, you know, and whether it’s math or science or language or the language and reading, everyone has one subject that’s just hard for them.

And so, so I, I do agree the smaller class size community colleges, your professors are more likely to be there to want to see you succeed. And so they’re, they’re, they’re usually willing to invest time. Um, and so I, and I’ve, I’ve seen that benefit as well, um, with my own kids and they even started in high school cause they were able to do the dual enrollment and start taking a class at a time with it to kind of ease into that, that package before they went on.

Another thing I wanted to ask you about, because, because my audience is primarily parents, we do have, um, educators and. professionals who listen. Um, and we have grandparents and siblings and neighbors who listen as well, but the parents are who, who we’re usually talking to. Thinking of a young parent who has a child, maybe, maybe they’re a three-year-old or maybe they’re in elementary school now and they’re facing a language impairment.

What advice would you give that parent who has children in that stage right now?

I would use visuals and, um, try and help. them communicate with visuals. I did not have that growing up. My parents and teachers purposely ignored my pointing and gestures to try to get me to communicate and that didn’t go smoothly.

Are you thinking like an AAC device or or what type?

Probably an AAC device or just even Text pictures that show symbols and visuals for the students.

And I know they have, um, even for like an iPad, um, like a, um, digital AAC device where your iPad can become that. So we’re not talking about having to buy another piece of equipment.

Right.

We have that equipment already. What about sign language? Did they ever try that with you?

No, no, they never, they did not try that with me. They tried that with my husband, not with me.

So my, um, my daughter did better with sign language as, as a baby than my son did, but it helped. Now, of course she was my first, so I could focus just on her, but at the time, my son got here, there were two of them.

Now I was a little bit busier, but, um, but with her in those early years when no child has language yet, but they have. Um, it did help her communicate with us, and it was just simple little signs that she knew, but it cut down a lot of the frustration that she might’ve had. And I’m thinking, three years old, you knew what you wanted to say.

You, you had things you were trying to communicate and you were trying to find a way to do it. It sounds like.

Yes.

So, um, so yeah, so I, I would think whether it’s an AAC device or I I’ve seen, you know, just flashcards where, but to me that would get hard to keep up with if you just had a box of pictures, they’d be in there forever trying to find, find what they’re trying to say.

Yes.

I think that’s an excellent idea using the communication devices. Are there other ways that parents can help their children build self-confidence when they’re facing adversity? So maybe, maybe not just language impairment, but, but any child who’s, who’s in the special needs or disability community, ways that parents might be able to help build their self, self-confidence.

Possibly by teaching them self-advocacy skills at a young age, because I did not learn self-advocacy skills until I was a junior in high school.

Wow. Yeah.

I didn’t have the, none of the teachers really were that supportive on teaching me those skills because I was a shy and quiet kid in class and, um, I don’t think they knew exactly how to teach me those skills.

Um, and just going that route and showing the students that, Hey, you’re your own person. You can, um, speak up and, and tell your teachers and peers what, what you need, what will help you.

Um, I, I agree with that. We, with our, with our children, we even helped them, um, starting around middle school and composing emails to their teachers so that it would come from them and then we would We would help them fix it so that it said what they wanted, but they learned that you could communicate in different ways.

So if they didn’t want to say something in front of the class or if they didn’t want to say something because they were gonna Be late to get to the next class and if they stayed after class to do that It gave them a way to open the door and they always had teachers who would who would correspond with them that way So it made it easier.

We always tagged because they were so young, we would have them tag our account. So the teacher knew that we were part of that conversation. Um, but it taught them what they’re using now in college because now they can text or, or email their professors, um, and either set up an appointment, you know, if they can stay after class or if they can come in a few minutes early, if there’s something that they need to, to go over with them, or if they, if they’re missing something like where they, they didn’t quite catch it in class and they, they just need that support.

Um, and parents, I think that’s, that’s great advice because starting as young as you can. Helping them learn to address what their needs are and to explain why, why it’s a need. Where they’re not coming in and saying, you know, I demand this that isn’t what we’re saying. No, we’re saying You you you you want to have a team effort?

Where where the teacher that they’re talking to is or it may not be a teacher It could be a coach. It could be someone in their church Sunday school or something anywhere that they’re working with other adults where they can Can just simply matter of factly state what it is That, that they need, and then it’s not a big deal.

It’s easy for someone else to help them if they know what it is. Um, and even being able to explain to their friends. Uh, my daughter was telling me she’s, you know, she’s um, almost out of school now. But she was saying that she still has to go through that, um, when she meets new friends. because they don’t understand that she doesn’t drive.

And so, you know, so she can’t just go meet them for a cup of coffee somewhere. It’s, it’s, it’s, it’s, it’s a little bit more than that. And, um, and so, you know, so she still kind of goes through that texting them and having to just kind of find the easiest way to explain it without having to go into great detail of what’s going on.

So we talked a little bit about the parents, um, for the kids, especially kids who are already in maybe those upper elementary years and, and beyond. Um, what advice would you give to the kids themselves who have any type of special needs but want to pursue their dreams, even if they might face some setbacks?

So in, in, in your case, you, you knew what that dream was. You weren’t encouraged by everyone, but you did have some encouragement coming through there as well. What advice would you give them as far as do they continue pursuing? I know the answer isn’t to give up, but, but do they give up?

I would, um, continue pursuing and if you feel that college isn’t right for you, or if you don’t want to take that path, you could always try it and just, and then get a job.

Um, working in somewhat of a similar field.

We were just talking about that with my daughter, um, with a friend of hers that she was trying to think of a way to encourage them to, to maybe to get a part time job in that area and start learning as they’re taking some classes at community college. So that was, that was her advice to them to, to just kind of be able to observe it a little bit.

Um, you know, and maybe even if you could get in and interview someone in that area. and find out what there, there may be a job out there you don’t even know about that’s still related to that first one. Um, so yeah, it’s a great, great, great advice there. Our listeners may want to, to follow up with you or to follow what you’re doing.

What’s the best way for them to get in touch with you if they want to, if they have any questions for you, if they just want to check in on what you’re doing.

I am on Facebook and my Um, Facebook page is called “Girl Who Was Not College Material.” And then I’m also on Instagram as “College Material Girl.”

I like, I like the Instagram one better.

And then you have some projects coming up that, that you’re working on right now. You want to tell us about those?

Yes. I am working on building a website and I am also working on writing a book about my life story. Um, I looked into writing a book about my life story. During the pandemic, um, I read a book called Stutter Interrupted by Nina G and I read her story and hers kind of was a little similar with mine.

And I was like, if she could write a book about her life story, I could. And I’m also writing it because there’s not too many memoirs about people who live with a language impairment and learning disabilities. They’re more like research based books.

Yep. No, I agree. Yeah. So, um, any idea when you think the book might be coming out?

I am pretty hopeful it’ll come out in the next couple of years. Um, at this point I have two dachshunds and they’re a little distracting, so I have to leave my house to go do some writing.

Well and you have a husband and you have a job and you’re doing public speaking. You have a few things on your plate.

Right.

Well, we’ll have to, we’ll have to stay, stay in touch and find out when that, when that comes out.

Listeners keep in touch with her with Instagram and Facebook cause I’m sure she’ll be posting there as the website comes out and as the book comes out. And um, you also had some handouts that, that you had mentioned too.

Yes. Yes. Um, I. As I was setting up my presentations that I’ve spoken at, um, I have like, um, handouts that help children with disabilities learn to be their own self advocate.

I’ve broken it down from preschool all the way through college and through Employment. And I also have self management sheets as well to where the students in elementary school, middle school and high school can look at those sheets to see where they feel they’re at as being their own self advocate.

Excellent. Excellent. Those are great resources. So if our listeners want to get a copy of that, should they DM you on Instagram? How should they reach out to you?

They can, um, send me a direct message on Instagram. And I also have a, an email address that is going to be connected with my, um, website, which is katie.selby11[@]gmail.com.

I’ll put that in the show notes as well so that listeners can connect with that. Well, Katie, thank you for sharing this with us today. I’ve, I’ve learned some from this and, um, and I’m encouraged by it too, because I love hearing how someone comes out of adversity, but in your case, that was a pretty strong discouragement that you had, but I love what you did with that and, um, and not only going on and pursuing your dreams, getting that full four year education and working as a para educator.

Just as you had always dreamed of doing, but, um, but keeping that reminder there through the names on your accounts, which I think is great.

Yes.

So thank you. Thank you very much for, for joining me today.

Thank you for having me.

View Details

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Homeschooling Neurodiverse KidsShow Notes:In this exciting episode, Tonya interviews Afsaneh Moradian about the 2nd Neurodiverse Homeschooling Summit, designed to support parents homeschooling neurodivergent children. Afsaneh shares her motivation for organizing the summit, aiming to offer practical help for parents facing unique challenges.

The conversation digs into the first summit’s focus on aiding parents in thriving while homeschooling and the upcoming second round, highlighting the possibilities and creative aspects of homeschooling.

Afsaneh, a homeschooling coach, emphasizes the importance of tailored support for parents dealing with communication, planning, and connection struggles. She extends her advice to parents considering homeschooling, stressing the commitment it entails and advocating for it only if it significantly benefits the child.

Afsaneh also mentions her children’s book series, “Jamie is Jamie,” which champions self-expression, gender neutrality, pronoun awareness, and self-advocacy in kids aged 4-8. The interview concludes with contact information for Afsaneh’s coaching services and books.

2nd Neurodiverse Homeschooling Summing Information:

Free Access to daily postings: https://www.mlccoaching.com/summit-registration
$87 Lifetime Access Pass to all postings, all resources offered by speakers, and A Customized Homeschooling Action Plan 1:1 Private Session With Afsaneh Moradian ($300 VALUE): https://learn.mlccoaching.com/af/206827914/1161143
- (This is an affiliate link that benefits the Water Prairie Chronicles podcast if you purchase the Access Pass after using this link.)

Connect with Afsaneh:

Website: www.mlccoaching.com
INSTAGRAM: https://www.instagram.com/moradian.afsaneh/
FACEBOOK: https://www.facebook.com/MLC.Homeschool.Coaching/
Jamie is Jamie picture book series:
- https://www.teachercreatedmaterials.com/free-spirit-publishing/series/jamie-is-jamie-542/

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Afsaneh Moradian is a homeschooling coach and author of the beloved picture book series Jamie is Jamie which has sold over 10,000 copies internationally and has become a classroom and home library favorite. As a homeschooling coach, she guides adults by giving them the language to communicate effectively with their children, empowering them to create learning spaces that are safe and inclusive, so children can thrive.

Afsaneh is a doctoral candidate in education and has a Masters in Education. As an educator and curriculum writer for over 20 years, she has worked with hundreds of students from preschool to graduate level.

Afsaneh has led various teacher training workshops and has appeared on the Consciously Parenting Podcast, Authority Magazine, CHADD’s Ask the Expert Series, Mamas at Work Podcast, ADHD is My Superpower Podcast, Caregiver Chronicles Podcast, USLA Radio, and more. She is the host of the Neurodiverse Homeschooling Summit.

Afsaneh enjoys homeschooling her unique child and drinking iced matcha lattes.

Episode #85: Embracing Neurodiversity in Homeschooling**Homeschooling Neurodiverse Kids**###### (Recorded September 25, 2023)

Full Transcript of Interview:

Tonya: Afsaneh, welcome to Water Prairie.

Afsaneh: Thank you so much for having me. I’m so excited to be here.

Today we’re gonna be, um, talking about a topic that we haven’t addressed yet, and that is homeschooling for neurodivergent children.

So if you’re a parent who’s. Who’s thinking about homeschooling. Maybe you’re already homeschooling. Stay through to the end of this because we have a lot of good content coming up and some links that you’ll want to check out after you finish listening to this. But before that, if you’ve been listening this season, you know that for each guest, we’re playing the game of Two Truths and a Lie.

And Afsaneh has agreed to play the game with us, even though I didn’t give her any warning on this one. I usually tell my guests ahead of time. But she is prepared to share three facts or pseudofacts with us and let us guess which one is a lie and which two are the truths. So Afsaneh, what are your facts that you want to share with us?

So when I was a kid, I had a pet hamster. And when I was a teenager, I dyed my hair pink. And when I was 17, I got into a car accident.

All right, listeners, your job now is to listen to the rest of this episode. If you’re watching on YouTube, go ahead in the comments. You can post your guess of what you think the answer is.

You can either write the two that you think are true, or the one that you think is lie or is is the liar or all of the above. If you’re listening on the audio or reading it on the the website, then go to either Twitter or Instagram to the matching. I’ll post for this and you’ll see where the, the questions are and you’ll be able to post your answer there.

A week after this episode releases, I’ll come back and I’ll post the answer so you can check your work.

Welcome to the Water Prairie Chronicles, a podcast created to encourage and support parents of special needs children. I’m Tonya Wollum and I’m glad you’re here.

Today, we’re talking about homeschooling specifically for neurodivergent children.

And um, and so Afsaneh has put together, and we first met actually this past summer when she had a summit that she put together called the Neurodivergent Homeschool Summit, if I remember correctly. Do I have the right name?

Neurodiverse Homeschooling Summit.

Neurodiverse. I was close. I was close. Yes. How did that idea even come into being? What was your inspiration? How did you come up with the idea of putting all that together?

I think it’s really hard to homeschool. And I think that a lot of what we get as homeschooling parents is how great it is and all the things you can buy and how amazing it is. And I don’t think there’s that much available about the struggles And when you’re homeschooling a unique child, there are very specific extra challenges and I just don’t feel like anything in life prepares you for that to that point.

And so I’ve always just felt like it’s very unfair. To ask parents, you know, mostly moms to, um, to figure it out on their own. And I don’t think that anybody should have to figure this stuff out on their own. You know, I got into education after, you know, an undergraduate degree. In the field’s practice, a master’s, I’m a doctoral candidate.

I’ve taught from, you know, preschool to graduate school. And when I started homeschooling my own unique child, it was really hard and it took a few years to figure out. And so I get all of the struggles and the resistance and the pressure and the anxiety and all of those things. And I just felt like, um, there should be a place that really acknowledges that and offers.

Real support in so many different ways that can make a very quick impact in the quality of life for the parents. So the first neurodiverse homeschooling summit was really focused on the parents being able to thrive from homeschooling and not so much about, you know, exactly how to help your children, but how to help yourself while you’re helping your kids.

And that that to me was really important because I don’t think there’s enough. caretaking of, um, parents that are put in this very difficult situation. So it’s kind of sink or swim, but you don’t, you don’t have to do it on your own. There are, you know, people that can help. And so this, the summit did that, brought everyone together to offer real support.

When some of the topics that you covered during that one, um, you had some organization things you had, you know, it was, it, I thought it was a really good set of tools. For parents that were either, you know, just had been homeschooling for years or thinking about coming into it. I was excited when I saw, saw what all you had to offer.

What were some of your main goals and objectives that you had for that first, the first one? You said, you said trying to support the parent. But, um, but did you have kind of some, some big ones that you were really trying to accomplish during that one?

Yeah, I think one of the topics that came up more than the others, Was how to, um, take care of your emotions when things get very difficult, how to regulate yourself, how to care for yourself, how to, and how to keep in mind what you would like for your own life.

So, you know, time management, self care. We even had a couple of people about how to start a business. So you can have additional income, you know, if that’s something that you’d like and really, you know, that you still get to be a person and you’re supposed to enjoy the process of homeschooling and still move forward in advance as a human being.

Um, so I think that all of the topics were really connected to that. And then there were some that were, you know, how to have a deeper understanding of what your child is going through. Once you have that, it becomes easier for you as the parent. So I would say, I mean, it was very directed at homeschooling, but a lot of this stuff really comes down to communication and communicating ways through the struggles, through.

the resistance, which, you know, when there’s learning involved, we really want to take care of it. But as we know, as parents, there’s resistance with brushing teeth and getting shoes on or doing homework or, you know, so I feel like a lot of the, the sort of wisdom, knowledge and suggestions really extend beyond just the few hours that you’re homeschooling into, you know, how do you approach parenting and living with neurodivergent kids?

When I, I remember when I saw the list of the topics that you covered the first round, and of course we, we, we’re going to tell more at the end, but there is, listeners, there is another round about to come up. So, so which is why, why we’re talking about this right now. But I couldn’t help but think that whether you’re homeschooling or not, as a parent who wants to be actively involved in your child’s education, almost all of those topics were going to be informative and, and valuable.

So, um, so it is specifically designed for homeschool. If you have a child who’s in a private school setting or a public school setting, you may still find some topics that are of benefit. To you as you’re helping to work with those teachers who are working with your child because as we know, we’re one we may be the main teacher for our child, but our goal is that our child has other adults in their lives too.

And so we need to be able to help those others know how to interact with them too. So I, um, so I feel like even if our listeners are not homeschooling, this still may be of interest to them. So, um, so every, everyone listen through to the end. You may find some pieces in this that, that are, that are of value to you as well.

Can you, um, talk a little bit about some of the specific challenges when we’re talking about neurodiverse children? We’re thinking of, um. Autism, we’re thinking of ADHD, um, dyslexia. What are some of the other, other types of, of students who may have a diagnosis that would come under that category of neurodiverse?

ADHD or ADD, anxiety, high anxiety, you know, kids that are easily frustrated, sensory, sensory processing. Disorder is a huge thing. How things feel, you know, or sound or, you know, all the sensory stuff that can definitely impede learning. Um, I think those are those are the main ones. And I would just say also, you know, just for intense kids. A lot of the diagnoses include high levels of anxiety.

Parents, if you have a young one, you may understand what we mean when we say emotionally intense kids, because, um, you may have, you may have seen that behavior, or if you have a elementary age, you may be. Be seeing that as well.

Um, but that, that’s the group that we’re thinking of. Of course, this, this expands beyond just that group, but that’s, that’s what we’re talking about here. But, um, Afsaneh, I wanted to ask you, when we’re thinking of that particular group of kids, what are some of the specific challenges that a parent may face in trying to learn how to homeschool?

with that. You were talking about patients earlier. There’s, there’s some other challenges that, that may come in there. Can you speak to a couple of those? Or I know kind of, kind of putting you on the spot with this question.

No, no, I’m so happy to. This is, this is my, this is my world. This is my passion. Happy to, happy to talk about it. Um, I think that when we go into the idea of learning or learning at home, we take with us what we know of education and what we’ve experienced. It’s, With education, which may be private school or public school, but it’s, you know, a teacher and then kids in a classroom and for most of us, the experience was more teacher centered rather than student centered.

And it was everyone doing the same activities. Maybe not in the same way, but at the same time, and there’s a lot of management of behavior and of bodies and of activities. And so that doesn’t really work very well for a lot of neurodivergent kids, which is why parents decide to homeschool, but then they don’t really know how to create something different.

So it seems like, Oh, I’m going to homeschool. So what I need to do is buy a curriculum, set up a space in my house, and we’ll do school at home. And then it doesn’t go very well often with neurodivergent kids, and the parents are just really caught off guard. They don’t know why, and so what they get is pushback, or we call it resistance, right?

This is the math assignment. I don’t want to do that. That’s too hard. That’s boring. That’s this or that. And the, the missing piece that parents don’t get to learn about, and a lot of teachers don’t learn about either, Is that in order for neurodivergent kids to learn, they have to find meaning and purpose in that learning and really all kids would prefer to have meaning and purpose, but some kids will do two hours of worksheets and not complain, but for neurodivergent kids, they have to, if they don’t have meaning and purpose, they’re not able to do it.

And the other thing about neurodivergent kids is that if they’re unable to do something, they, they can’t. They’re unable to do it. Whereas other kids, maybe they’ll, they’ll try, they won’t complain, they won’t, they won’t give pushback. Maybe they’ll just do it all wrong, right? Get all the wrong answers, but they’re still trying and they’re, and they got a smile on their face.

And neurodivergent kids just can’t, if there’s something they’re unable to do. And they can’t get over it. They can’t get past it. They can’t pretend that there isn’t a problem. There’s a problem. They’re blocked. It’s done. It’s not going to happen. So if the adult pushes, you know, wants them to get over it and do it anyway, there’s probably going to be some kind of explosion and that, that catches parents off guard.

It really, it really does because it’s not what you’re allowed to do at school. It’s not the behaviors. that go along with learning in our experience. And then we see, you know, we’re trying to teach our kids. We’ve spent all this money on this amazing curriculum online or, on paper or whatever. We’re so excited about it and our kids are like going into crisis.

And it’s like, wait a minute. That’s not what I signed up for. I don’t know what to do. So that, that definitely I think are the key, the key challenges that come up. And then parents just don’t know how to respond. They just don’t know what to do about it. So that’s, I think that’s what happens generally.

We’re releasing this on January 5th and in just a couple of days, the second round. What can you tell us about that? What if people want, want to attend, what can they, what can they expect to find? How does it run? Just any information you can give us about, about kind of what, what is it? Because we’ve kind of touched on a little bit, but not the details of what it is.

Sure. So this, the part two, part two of the NeuroDiverse Homeschooling Summit is really focused on the possibilities of really how great things can be and what is possible. And so it’s still going to, just like the first one, there’s still going to be occupational therapists who are giving real tips and suggestions and, you know, valuable knowledge about different aspects of, you know, children’s development.

But also there’s going to be people talking about the creative side and, you know, what’s possible for kids when they’re homeschooling, you know, starting businesses or, you know, learning new things and just the, the real, um, the possibilities, the limitless possibilities. Once you kind of break free of sitting at a table, doing learning as a definition of homeschooling.

And so, I’m, I’m really excited for parents to get to be a part of that. So it’s still support for parents of what you need, you know, to set your day up and set yourself up to succeed at homeschooling. But it’s also kind of broadening out our expectations for what’s possible for our unique kids.

So, there’s a sign up that they’ll need to go to. And then like, how, how do, if they want to check into this, how do they register? How do they get in there?

So I’m sure the link is somewhere very accessible to this video or this podcast. Um, so yeah, you just, you sign up to, um, participate in it. The summit is free. It’s really important that you sign up because the way it works is the speakers.

Um, have a segment, you know, 15 to 20 minute segment, and there’s like one to two speakers a day. So, but their, their pages are only available for that day. So you need to sign up so that you get the email. There’s an email in the morning and then there’s a reminder in the evening. Otherwise. Um, and that way you can see all of the speakers, you know, who’s speaking that day, how to access their page, how to download their resources, because each speaker is sharing a free resource with the attendees and they’re amazingly, amazingly valuable stuff to download, you know, do on your own time.

And so that’s why you sign up and then you get the access every day to the speakers. And, you know, there is a VIP all access pass for people who are busy and they just aren’t able to tune in every day, then you can just have access to the whole thing from day one and just watch it in your own time and have access for months and months and months to the resources, the speakers, the whole, the whole thing.

So that is, um, that’s how the summit is set up.

Great. So, um, she, she said there’ll be links somewhere. Look in the show notes or in the description if you’re on the video and you’ll see a direct link there going to it. So you’ll be able to, to check in where it is. And what I really love about what you’re doing with this is that it is free access to everyone.

It’s um, but if you’re listening, you’ll want to stay on top of it though because it is daily and it’s only what, 24 hours from the time it releases?

Yes. Yeah. 9 a. m. Eastern to, you know, yeah. 9 a. m. Eastern the next day.

Right. So, so whenever, so whenever it releases, just watch it before, before you, you go to bed that night.

So, so you know, you know, you’ve gotten it. And the resources, um, from last time I know they were, they were excellent. The, the, the types of, of free downloads that you were able to get were, were really nice for each one. And um, and then the other thing too is if you are busy and you’re not going to be able to focus on the time.

The, what I noticed was that your price for someone to come in and be able to access all of it was, was a good price. It wasn’t, you know, thousands of dollars or anything like that. This is something that pretty much every parent should be able to reach. And um, so if you, if you’re thinking, I’m, I’m, I’m too busy to be able to attend this, check, at least, at least go, go to the page, see, see what there is to, to, to find there and then, and then see how it’s set up.

I think, I think it’s, it’ll, it’ll surprise you whenever you get there. So, beyond that, um, you also, your regular job, you know, you, you have homeschool mom, you have running a summit, you also have a coaching business. Is that correct?

Yes, I am a homeschooling coach for exactly what I’ve been talking about. For parents struggling to homeschool their unique kids, diagnosis or not, if it’s a struggle, the communication part, the planning part, the connection part. That’s what I work with parents on, because it all, it all fits together. The communication piece is so important. You get rid of, you know, if you change how you communicate, you actually can parent and homeschool without power struggles.

I know nobody believes me, but absolutely you can do it without, without the sort of conflicts, without the pushback, without the power struggles. But what I say, you know, what I always say to my clients is you can have the best communication in the world, but if that math assignment is not developmentally appropriate, your child can’t do it.

So I work with parents to really, you know, go through the communication piece, but then make sure that they’re empowered to be able to, in the moment that it’s not working, make changes so that learning can continue. Um, even if it’s not that exact assignment from the curriculum that they’ve chosen. So being able to modify, being able to really see who their child is as an individual, their learning needs that all, you know, I, I help parents have that and have that approach so that then they’re good to go for years and years and years.

What types of resources and support are you able to give to through your coaching?

So I have, um, an eight week. Highly customized coaching program. So it’s one on one and we just go through who you are and what your needs are and your expectations of homeschooling. And we work with that while also recognizing who your kids are.

You know, some people are homeschooling more than one child with more than one diagnosis and they’re kind of, you know, it’s hard when they come to me, they’re, they’ve usually, you know, they’re in dire straits. Um, and we, we turn it around so, so fast and, you know, we work together to look at what is that specific situation?

Who are the people involved? What do they need? How to streamline planning, how to make it so much easier for yourself so that the learning is actually on the kids, not on the adults, which is like, it’s, that’s a tough thing, especially, you know, so many teachers. Are like sweating by the end of the day and it’s like, nah, you know, when I was teaching like, nah, the kids, the kids are going to do the work and I’m going to, I’m going to like facilitate the learning.

I’m not going to do, you know, they have to, they have to sweat more than I do. Right? So, you know, figuring out what does that mean for your kids and then really creating the meaningful high level learning experiences so that the kids are engaged, intellectually challenged, excited about what they’re doing.

And you don’t have to have the stress and the worry and the anxiety of, you know, is my child learning enough? Are they going to succeed in life or, you know, there’s a lot of pressure. There’s a lot of, a lot of pressure from external pressure, pressure we put on ourselves. So that’s what we do over the course of eight weeks as we go through all of that.

What’s the communication? What’s the planning look like? How do we modify? How do we create experiences? That are going to be amazing for your individual family because homeschooling kind of has to be unique as unique as your kids are because they, they’re, these are not one size fits all children and neither are you, right?

So we want it to be fun for you with your passions, your interests, you know, you should laugh, you should, you know, this is your life, so I’m very focused on the parent and, you know, that. If you’re struggling, the kids are struggling. If you’re confident, empowered, you, you know, have an idea, it’s not always going to go perfectly, but if you know how to do the trial and error, if you know generally what direction you’re going in, then you can handle anything that comes up and you’re fine, right?

So that’s what I set you up to do. I give you those tools, this, you know, an approach to, to fall back on. And then, you know, parents are, are pretty okay. And I do have some, you know, digital products, some like self study type things, um, for people who aren’t ready for one to one coaching, but there’s, there’s really nothing like going through your specific situation and the help that you need.

And I, you know, just like, I can’t create a one size fits all thing because it’s so highly customized, but I do, I do have, you know, like a resistance handbook that just gives a very in depth explanation of. What resistance is, why do kids resist and sort of, you know, how to respond in ways that won’t lead to a power struggle.

So that’s, that is something that is available. But, um, and I’m making more and more, you know, smaller digital products too, but that’s mainly what I do is the, is the one on one coaching.

So, parents who have not started homeschooling yet or those who are and need a little bit of extra support, they would both be potential clients for you?

Absolutely. Okay. And you know, I mean, I do focus on homeschooling, but parents who are struggling with communication and just, you know, battling over homework every night and that sort of thing, who really would like a different approach. You know, I can, I can help out with that as well.

What advice, do you have any final advice that you would give to parents who are considering homeschooling, but they haven’t started yet?

If you want to do it, go for it. If school is working for your child, you don’t have to homeschool. I know it’s very on trend. Everybody’s homeschooling now, but I’m just going to say it is a real, it is a real commitment. It is a real endeavor and it’s not, it’s not easy. Like it takes a little bit of time to figure out.

So if your child is fine, is healthy, is thriving at school. It’s okay. You don’t have to pull them out of school to homeschool if, if they’re not, and you have the option to homeschool. I absolutely recommend it. I think homeschooling is an amazing opportunity to create a totally different educational experience where kids can really have, you know, amazing experiences and meaningful learning where they just Learn beyond what you thought was possible beyond what’s possible in school.

So I, you know, absolutely recommend giving kids, you know, an education where they feel confident and supported and excited. And I, I think if at all possible, you know, we should remove the anxiety and the stress and the pressure from learning. So that, you know, kids can just learn and have the joy of learning.

So homeschool enables us to do that. Once you know how to do that, then you can give your kids that. So. That’s, you know, so I’m, I’m of two minds about it. I don’t think everybody should pull their kids out of school and homeschool at all. But if you see that your kid is really struggling and it’s, they’re really not able to learn in the school settings available and you are able to homeschool, I think it’s an amazing gift that you can give your kids.

And then you probably need some support to figure out how to create that in your house for your kids.

Our listeners, some of them may want to get in touch with you. What’s the best way for them to contact you?

So my website is mlccoaching.com and I have, um, free consultation calls, 30 minute calls, and we can do a lot in 30 minutes.

So that I think is one of the best things to do, because then we have a chance to actually talk about. What you’re thinking and feeling and the kind of help you’re looking for and get an action plan together during that time. But you can also send me a private message, um, on Instagram. It’s my last name, then my first @moradian.afsaneh on Instagram and on, um, Facebook. It’s MLC Homeschool Coaching. So, if you send me a message, I will read it and I will respond. But I think the best is to, is to set up the consultation call and then we have a chance to really talk through whatever you’re going through. Cause some people send me messages and I don’t, I don’t have like two hours, you know, there’s a lot to say.

I don’t, I don’t have the time to really put it all in messages. So, you know, face to face, it goes a lot. It’s a lot faster.

And we’ll, we’ll include those links in the show notes too. So you, you don’t have to remember them just hearing it once. Um, asana, what else do you want to tell me about, about what you’re doing?

Um, between your coaching, some projects you have coming up, anything else you want to talk about?

Sure. I’m so I’m also a children’s author and I have a picture book series, the Jamie is Jamie series at through, um, Free Spirit Publishing. And, um, it’s a really, you know, if I, if I do say so myself, it’s a really fantastic series of, um, validating kids and letting them know that play is all about just expressing yourself and being who you are.

So the first book is, you know, that play just doesn’t have gender, that you should just play and be yourself and be proud to be who you are and follow your interests and be a good friend. The second book is all about pronouns, people’s pronouns, how pronouns change, and how not to make assumptions about pronouns.

And the third book is self-advocacy for kids. You know, how do you share really important information with your grown-ups, which is kind of hard to do for kids sometimes? What do you, you know, to really say, what do you like, what do you dislike, what are you scared of? What are your preferences? Sometimes it’s really hard to say that even to your parent, like, Mom, I don’t want to do that.

You know, cause there’s kids are so scared to disappoint us or that we might get upset at them. So it’s all about self-advocacy and how to really, how to share with grownups. And then for the grownups, how to really listen to kids and really see them as individuals and respect. Their wishes, their, you know, their preferences and their ideas.

So, you said they’re children’s books. What age is it geared toward?

Four through eight, they’re picture books. They’re available on, you know, Free Spirit or Amazon or, you know, they’re in a lot of classrooms. You may have seen them, but, um, that is, that is the other part of my life. And it all fits together because I, you know, I had a unique child who couldn’t see themself in the books that we were reading.

So, I had to write one. And then I had, you know, I became a homeschooling mom because my kid couldn’t get what they needed from the schools that were available to us. And then, you know, I became a coach because I thought, wow, this was really awful. No one should do this alone. I want to make sure nobody goes through what I went through, so I’ll just help.

So that, that sort of, you know, my child very much set my life on. A different, a distant course that I never could have anticipated.

It’s amazing how much we learn from our children.

Absolutely. Well, absolutely.

This has been fun. I appreciate you sharing about this. Um, listeners remember, um, check out the links.

There’s several different types of links. You have the, the coaching if you’re, if you are homeschooling or thinking about it and want to work one on one with her, look for those links. You have the, The homeschool summit coming up, um, just in a matter of days and it, it’s more than just a couple of days.

So if you’re listening to this a week late, go ahead and, and check it out cause it’s still going on. And then you also have the book series. So we’ll try to find the links to those and get them in there as well. So you can, can find all of these and the resources. And if not, you can always shoot us an email and ask us more.

So, so thank you absolutely for coming on and joining us and sharing all of this with us.

Thank you. It was my pleasure. Thank you so much for having me.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

The significance of the Hunger Games movie in the Disability CommunityShow Notes:In this episode, we’re dishing out the hottest updates from the world of the Hunger Games and heartwarming news that’ll make your day!

Get ready for an exclusive peek into Sofia Sanchez’s journey from our past interview to the dazzling lights of the big screen! Her groundbreaking role in the latest Hunger Games movie has sparked conversations worldwide. Join us as we uncover Sofia’s remarkable achievement and the impact it’s making beyond the silver screen.

But wait, there’s more! Love is in the air as we share an unexpected romantic moment that went viral! You won’t want to miss this heartwarming surprise that’s stealing everyone’s hearts.

As we gear up for Thanksgiving, we’ve got exciting sneak peeks of upcoming projects that’ll keep you eagerly anticipating what’s to come.

Tune in for a bite-sized dose of inspiration, updates, and surprises that’ll leave you smiling. Join us on this adventure and don’t miss out on the fun!

Connect with Sofia Sanchez and Jennifer Varanini Sanchez:

INSTAGRAM: https://www.instagram.com/the.sofia.sanchez/
INSTAGRAM: https://www.instagram.com/thesanchezsix/

Connect with Matthew Schwab:

INSTAGRAM: https://www.instagram.com/matthewschwabspeaks/

DISCLAIMER: The Water Prairie Chronicles is an informational podcast. The contents of this episode are for informational purposes only. Check with your doctor and/or counselor with questions specific to your own journey.

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Insights for Parents on Mental Health and Invisible DisabilitiesShow Notes:In this interview, Jami Kirkbride shares her insights and experiences as a parent of a child with invisible disabilities, particularly related to mental health challenges. The discussion revolves around the challenges parents face in helping others understand and support their children’s needs.

Jami emphasizes that invisible disabilities can be difficult to grasp for outsiders, leading to mislabeling or misunderstandings of a child’s behavior. These children may be wrongly perceived as undisciplined or defiant when, in reality, they are struggling to cope with their invisible disabilities.

She discusses various aspects of her journey, starting from early signs of her child’s challenges, such as needing structure and showing hyperactivity and impulsivity. As her child grew, they encountered issues with sensory processing difficulties, leading to meltdowns and overstimulation.

The conversation touches upon the importance of educating oneself about invisible disabilities and then sharing that knowledge with others, including extended family, teachers, coaches, and community members. Jami highlights the significance of using phrases like “My child is not giving me a hard time; they are having a hard time” to shift the narrative from judgment to understanding.

The interview underscores the value of open communication between parents, extended family, and other adults involved in the child’s life. Jami advises parents to create an “elevator speech” summarizing their child’s needs and fostering clarity in conveying those needs to others.

With the upcoming holiday season, Jami suggests having a family huddle to collaboratively plan for the holidays, involving the child in the decision-making process. She also recommends using a prepared letter to share with extended family members, encouraging them to understand the child’s challenges and offer support.

The interview provides valuable insights and practical advice for parents dealing with invisible disabilities, emphasizing the importance of awareness, communication, and collaboration to better support their children.

Connect with Jami:

WEBSITE: https://parentingwithpersonality.com
INSTAGRAM: https://www.instagram.com/parentingwithpersonality/
FACEBOOK:
- Parenting With Personality Support Group: https://www.facebook.com/groups/1355086178331900
PINTEREST: https://www.pinterest.com/parentingwithpersonality/
Behind the Behaviors: Understanding A Uniquely Wired Child
- *FREE Resource Link: https://pwpersonality.kartra.com/page/jDR715

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

With warmth, experience in professional counseling, and the wisdom gained from raising seven wonderful children, Jami Kirkbride works as a dedicated parent coach, speaker, and author. She offers valuable insights and practical guidance to empower those in the unique journeys of parenting. Founder of Parenting With Personality and creator of the transformative Calm Connection Parent Coaching Program, she equips parents with the tools and strategies they need to foster meaningful connections. She understands the struggle this can be when dealing with children who may be highly sensitive, highly emotional, intense, or exhibiting challenging behaviors.

As a regularly featured guest on ChannelMom Radio, her relatable stories and humorous anecdotes bring laughter and inspiration to listeners, making parenting an enjoyable and fulfilling adventure. Join Jami on this incredible journey and discover a world where connection, laughter, and growth abound, even in a bustling household with big emotions and unique challenges.

Episode #83: Parenting with Purpose: Advocating for Children with Invisible DisabilitiesInsights for Parents on Mental Health and Invisible Disabilities###### (Recorded September 27, 2023)

Full Transcript of Interview:

Tonya: Are you a parent dealing with the challenges of raising children with invisible disabilities? Maybe your child is highly sensitive, emotional, intense, or exhibits challenging behaviors. Today I’m talking with Jami Kirkbride, a dedicated parent coach, speaker, and author who offers practical guidance for empowering parents.

With seven children of her own and a background in professional counseling, Jami brings valuable insights to help you navigate the unique journey of parenting. In this conversation, she’ll share her wisdom and relatable stories to equip you with the tools and strategies needed to foster meaningful connections with your children.

Stay tuned for a special free resource Jami has in store for you at the end of this interview. Jami, welcome to Water Prairie.

Jami: Thank you. I’m so glad to be here.

So I’ve been looking forward to this. Jami and I met months ago online and we’ve been corresponding at different times, but it’s just taken us some time to find a mutual time where we could sit down and talk.

So we’re, um, we’re looking forward to bringing you some, some information today. I think a lot of you are going to be able to connect with us. So, stay with us. But if you’ve been listening this season, you know that I’ve been playing the game of two truths and a lie with each of my guests and we do this upfront.

So Jami has agreed to play the game with us and she’s provided us with three Facts about herself. Your job as a listener is to decide which one is really a lie. And if you’re watching on YouTube, put your com in the comment below what your guess is. Otherwise, go to Instagram or Twitter, find the post that matches this, and write your comment there.

A week after this releases, I’ll come back and I’ll post the answers so that you can check your, your, your work. The schoolteacher in me has to, has to have a, have, have a, have a check at the end there.

I love it. This is a great idea.

But listen to the whole episode first, cause you might get some tips in there of what the answer is.

All right. So Jami, what are your facts that you brought?

You bet. Number one, I helped undress a body for an autopsy. Number two, I love to surf the waves when I’m able to get away. And number three, I have shot a semi-automatic gun.

So, listeners, look at these three, see what, see what you think, and um, remember what your guess is.

And after you finish listening to this, go and check on Instagram or Twitter and put your answer there.

Voice Over: Welcome to the Water Prairie Chronicles, a podcast created to encourage and support parents of special needs children. I’m Tonya Wallum, and I’m glad you’re here.

Today we’re going to be talking about invisible disabilities and how they can sometimes influence how other people see our children.

So Jami, can you tell me a little bit about your experience as far as parenting a child with invisible disabilities?

You bet. You know, I think one of the things that makes invisible disabilities so challenging is that when your child is struggling with them, you feel like they are painfully obvious.

But to other people, they just maybe, you know, slap on a mislabeled, you know, diagnosis, or maybe they’re just calling it a misbehavior. Maybe they just think your child is hyper. Maybe they think they’re unmannered. Maybe they think they’re undisciplined. So they’re labeled with a lot of different things, but their real issue, or their wiring, as I sometimes like to refer to it, isn’t being understood.

And so for that reason, people miss what it is that they’re seeing.

The, um… So, I listed a couple of things that might fall into that category. I know I missed some. Can you think of any more that, just for parents that are listening that may not know, is this really what I’m looking at or not?

You bet. You know, for our son, we started early because we had the idea that maybe, um, his personality started looking like it was maybe just strong-willed.

But then by the time he was in preschool, he seemed to really need a lot of structure. He didn’t always really like the structure, but he functioned best within the structure. And then as he got a little older, we were like, you know, parts of this feel like maybe a little bit of ADHD and unfocused and maybe hyper-focus on certain things, but not the right things.

And then as he started getting just a little bit older in school, we started seeing Some of that, um, restraint collapse where maybe he would function well at school while other people watched, but we were reporting that he was coming home and falling apart at night and he just couldn’t hold it together anymore.

He was trying so hard all day that by the time he came home, it felt like we were dealing with a different child than what they said he was doing at school. And it kind of made me feel like I was going nuts. And then the next step was that some of these behaviors started happening. At school, and then of course, at that stage, it was that he wasn’t behaving or that he was being defiant or that he was being disobedient or, you know, whatever people want to put on behaviors that we see.

But the problem is when we’re dealing with invisible disability, sometimes these behaviors are just the alerts. They’re like the red siren light that’s supposed to say something’s going on here. And so that’s what we started experiencing in school, is that a lot of what they were seeing, they were relating to bad behavior when we knew there was something more behind the behavior.

But I think sometimes too, um, the way that you spelled out the progression there, I’m picturing, you know, when, when they’re young, you’re just seeing some, some little things that, that you might notice, but no one else is noticing as they go through the elementary years. Um, they still have more support within their classroom.

A lot of the classes may have a teacher’s aid that’s in there. So they’re, they’re still able to kind of hold it together. But as you’re noticing these changes, I know in our family, we saw this too, as that support withdrew, it’s more pressure on the child now to figure it out on their own and to, to kind of hold it all together.

And we had the same thing. Um, and we had a counselor tell us once that we should be happy that. That the meltdown was at home because it meant that they were safe at home. If you’re a parent listening to this and you understand what we’re talking about then, you know The stress level at home gets higher and higher because everyone’s just exhausted now and we’ve spent a lot of time just re replaying what had happened at school If something did happen and trying to figure out from this young child’s point of view, what could he have done differently to make it better?

And I realized there was a disconnect in there that the child should not be the one trying to make it better. The adult should be the one that’s trying to help the child make it better. And, um, but at the point where, where we’re talking about with my son, at least it was, I couldn’t get it the other way.

So here 10 years of age. How to be the responsible party in the interactions that are happening at school and that’s unfair because that’s a lot of pressure on a child Even a teenager. It’s a lot.

Oh, yeah And you know, I think for us one of our big wake-up calls was that we really didn’t know much about sensory processing And as we started becoming more informed parents, we realized how our child was truly impacted by a lot of sensory processing difficulties.

And, you know, looking at him from the outside, he seemed very typical. He looked very normal. You know, he was like a little boy that was just busy, but if you ever really watched or dealt with him, there were just these things that didn’t always add up, you, it, it seemed like an exaggerated response or an avoidance or a resistance or, you know, it just didn’t always flow.

And as a mental health professional, I felt like I probably had a pulse on it sooner than maybe some parents would. But I still missed so much of it until I became informed about the sensory piece. And then I started realizing that some of the things that he was struggling through were things I would have never even imagined.

You know, he came home one day and was just insistent that the kids on the bus were mean to him. And I said, you know, help me understand. When you say the kids on the bus are mean to me, What does that sound like? What does that look like? What are they doing? Like, help me understand. Yeah, and he said, they ask me questions.

They ask me questions, and he was really worked up, and I said, well, tell me, what are some of the things they ask you? Well, they asked me things like, can I sit with you? And he was serious. He was very serious. But the problem was, he had a real sensory issue with space, with touch, with needing his own area and feeling unsafe if people were in that.

And I had to realize that if those were the kind of things that were putting his system into that fight or flight, His day probably felt really, really rough because those are interactions that happen so naturally at school and not for him. And so I think,

you know, you’re waiting in line, everything all day long,

right? And, you know, people ask you, can I, can I do this? Can I do that? If just a question felt threatening to him, so many pieces of his day had him overstimulated, had him overwhelmed, had him overloaded. And so we had to totally back up and talk about what is it that you feel when people ask a question. And what do you say when somebody asks you a question?

And what if you don’t want them to sit with you? How do you answer that? And we had to do a lot of role-play. Honestly, these are things that when you’re dealing with maybe neurotypical children, you never even think twice about. But when you’re working with invisible disabilities or neurodiverse brains, these are things we have to really back up the train and we have to realize they don’t even know how to label them.

What is going on in their body, let alone tell us what’s going on with their body and ask for what they need. And that’s typically what a lot of these children with invisible disabilities are facing. All of these adults in their environment are saying, just ask for what you need. Tell us what you need.

We can support you. We can help you. They don’t have a vocabulary for that quite often,

Right. So, I’m thinking, first of all, primarily listeners are probably having their kids in a public school setting or maybe a private school setting. So they have teachers that are there, but there’s also coaches that might be, if they’re involved in sports or some type of debate team or something like that, there are other adults that are involved with our kids lives and it’s beyond just the classroom.

You know, it might be a dance class or it might, it might be a church group, something like that. How can we help those other adults change that view of the child’s behavior being negative to realizing that maybe the child’s just having a hard time adjusting or having a hard time explaining this? How is, as parents, how can we communicate this to the other adults that are in our child’s life?

Yeah, that is a great question and it’s one I deal with a lot. I think number one is that we need to educate ourselves. And it’s important that we educate ourselves because the next step is that we need to share what we learn to educate others.

And as we take that risk to educate others and invite them into understanding. What invisible disabilities are about where, whether it’s ADHD or a mood disorder or some sort of, you know, other way that our child is wired, we invite them into understanding that. And then I think it’s important that we even use simple phrases like this.

And it’s one of my favorite. My child is not giving me a hard time. He is having a hard time. And I think when we start spreading that very important mantra. Others in their environment are going to say, you know what, there’s something to that. Because children will do well when they can do well. And if a child isn’t doing well, that’s our alarm that something needs addressed, whether it’s they need a skill, maybe they need us to teach something, maybe they need practice at something, maybe they even, we need to identify something.

And so when we look at behaviors as alerts, and we teach others in their environments, what those things can alert, then they start having eyes for different things as well. And so it requires Helping people suspend the judgment on the child or the behavior and instead starting to look at what is this child trying to tell me, what are they communicating?

Because all behavior is communication.

You know, as we’re talking here, you know, we both have sons, sons that we were talking about, but I was thinking through a situation where my daughter was in a program in high school and there was a girl in their group who had high anxiety, but the leader in the group didn’t understand that.

And I kept hearing things like, um, she’s, she’s just being, um, a drama queen and, um, and those, those are harmful things. You know, if you’re listening and you have a family member who may be, maybe they have a child who has a hard time easily, I’m just hoping that, that we’re getting through that there are ways that you can support that family.

Even if this isn’t your child that we’re talking about, maybe, maybe it’s a child on your son’s little league team, something like that. Um, and, and it may be that you can take what you’re hearing here and pass that on to the other parent. It’s kind of hard parent to parent to tell another parent what to do, but if you could at least maybe use some of the wording.

Um, when you’re talking to the parent without, you’re not passing judgment, you’re just, you know, saying, you know, Johnny’s really having a hard time today. Or um, you know, or maybe, maybe is, is there something I can do to help support Johnny right now? Um, those types of questions. The, um, yeah, so I, I, you know, going, going into the conversation, I was thinking of my son, but I’d forgotten that, uh, about her and, and I know my daughter seemed to, to rally around her because she, she could understand a little bit better what was happening, having had a brother who has similar types of hard days,

Right? You know, that reminds me of a situation where we were sitting in a movie theater and our son who has the invisible disabilities saw for the first time somebody else struggling in the same way that he did. And I will never forget this moment. It was like blinders were just suddenly taken off for him.

And I could see his wheels just kind of spinning. And when we got home, we were sitting at the table that night, and out of nowhere, he says, Is that how you guys feel when that happens with me? And it made me sad because for the first time, he had an awareness for something that was his struggle from the outside looking in.

And I said, you know what? I hope that you saw that that boy’s family came right alongside him and they helped him. They cared about him. They talked to him. They went out with him. And then when he was able, they came back in with him. I hope that you know that that’s how we try to help you. When you have those hard times, and I think that, you know, they’re coming into different awareness the same time that we as parents are coming into an awareness, and I think You know, when we start seeing things more clearly, we can help them see things clearly and the people in their environment see them clearly.

And that truly is when a lot of this mental health stigma is going to finally start dissolving. Yeah, and it takes these new and fresh perspectives. And I think as an informed parent, as an informed teacher, as an informed coach or community member, however, it is that you are impacting children’s lives, that is, that is where your power is, in the awareness and acceptance

Well the you know, the days of having to hide everything should be gone now. I don’t know that we’re there yet, but I think we’re getting closer to being there and I think there is more understanding and acceptance if, if the words are communicated, assumptions still happen, but if we can, can talk and have this open communications, I think it does help

that is an important piece though, because I think so many parents, are, are afraid of risking communicating about it.

You know, that was one of the reasons that I even started working on, you know, on this new quick guide was that people in my coaching program were saying, I don’t even know how to tell my extended family. I don’t know how to tell my own parents. I don’t know how, how to even tell. You know, my sisters or my siblings, like we just avoid even going to family things because our own family doesn’t get it.

They think that we’re just doing poor parenting or that our child’s just bad, or that we aren’t being consistent or giving discipline, you know? So that is such an important piece. And it is surprising to me how scary that feels to so many parents to even open those conversations. But I agree with you. Those conversations are key.

When I think too that as parents get more opportunities to share those conversations, I think there’s a strength that comes on the parent’s side. That the first, the first time having that conversation, it may be a family member at that point. It, it is intimidating because you don’t have all the answers yet.

You’re, you’re not the medical professional that’s coming in, but you do know that your child needs more support. And, and You’re not a bad parent, but we all, I think we all go through that phase of thinking, you know, how do I look on the outside? We had this on a, a few weeks ago, we had a similar conversation on this.

That, um, you know, you go into the grocery store and your child’s on the floor. You know, it, the first time it happens, it’s all about you because, you know, everyone’s looking, you know, it has nothing to do with you.

You’re like, wait a minute. This is the kid I was never going to have.

Do you go outside and threaten, threaten a punishment?

You know, you kind of have to go through that mindset. Change that. No, this is, this is okay. But, but little Johnny is in pain right now. Something’s happening that’s causing this and it probably is an overstimulation and going outside is the right answer just to get away from the situation.

I remember a situation, our son having the sensory stuff struggled to be outside.

He struggled with waiting. He struggled with the weather elements and we were outside at a track meet all day. I hadn’t done my very best parenting, so we were late getting lunch, so he was low on protein, and he had a massive meltdown in front of this crowd of people that were in the stands. And I remember thinking in that moment, He needs protein, and he needs a sensory tool, and I knew that crunchy tortilla chips were his sensory tool of choice.

And that the cheese would have some protein, better protein than anything else at the concession stand. And that I really needed to go and get him what he needed, but I will never forget just how I felt all eyes were on me as I’m rewarding This child with an invisible disability with a plate of nachos because he just had an Epic meltdown in front of the crowd which included insulting me and I know to outsiders looking in it looked as though This child just threw this massive fit and was mean and I rewarded him with chips And you have to learn to just kind of suspend that you’re gonna care what people think When you need to tend to the invisible disability issues, because they don’t make sense, it doesn’t always add up.

It rarely adds up. The math does not work out. But in that moment, I knew I needed to stretch beyond and give him the tools he needed to cope in the situation. And within minutes, we were able to, to get to a place where we could, you know, now let’s try again. Can you respectfully ask for what you need?

Okay. You need a break in the car. Let’s go take a break in the car. Let’s turn on the air conditioner. Let’s let you take your shoes off, you know, and tend to the needs. And again, this is why it’s so important that people in our children’s environments start understanding, what behaviors would we notice.

What would we see? What might it sound like? And what do we need to know in working with your child? You know, if you were going to sum it up into two sentences, what is important for other people to know? And I, I just shared this in my coaching group today. I said, you know, for those who have ever done any kind of selling or public speaking, they encourage you to have like your elevator.

Elevator pitch or elevators. I think we should all have one of those when it comes to summing up your child’s needs.

That’s a great point.

Simply because if you can say short and concise. What your child has going on and, and how you want others to perceive him or look at his issues, you sound like you have clarity and a parent that has clarity can go so much further than one.

That’s like, I don’t know. I mean, we kind of deal with, you know, so practice your elevator speech on what your child’s needs are, because I think that is how we become informed and how we pass on that ability. To understand and other people see their issues in a concise package, even though we know there’s so much more to it.

How would you just slim up that package to be like, you know what, just so you know, this is what is great about them. And you might, you might sense this or feel this, but this is who they are and you know what, they’re created with a great purpose and it’s going to come in handy. You know.

So we’ve kind of touched on this, but I’m going to throw it back out there again. The holidays are coming up, so family gatherings are going to be happening. Any words of advice for our parents who are going to be with the extended family, with the extra sugars, the extra excitement of everything else? Um, any tips for them as, between communication with the extended family, but also, um, I don’t know, maybe you have some tips on… Helping to prevent the meltdowns, if they could think ahead on that too.

That’s right. You know what? I have a couple great ideas that I’d love to share. First of all, I encourage every family heading into the holidays to have what I call a huddle. A family huddle. Talk about what is it your child may be struggling with, with the holidays coming?

What is it that they really want to do during the holidays? Do they have any concerns about the holidays? Where do you plan to be for the holidays? And get a plan. Collaboratively figure out what your holidays are going to look like. And when they get some say in that plan, there’s more buy-in. And so you can eliminate some of these meltdowns by just using a collaborative problem-solving approach.

And when it comes to dealing with that extended family, I think number one, it takes being willing to risk it. It takes being a bit vulnerable. And it’s okay, like, some parents are like, you know what, my plate is too full. I am managing with my child’s consistent meltdowns, and I don’t have extra energy to recruit others.

To understand and you know what? I get it. Sometimes you need to just know your boundaries and be like that conversation is for later But other times that risk can really bring some change within the extended family And that’s one reason I love this guide because in the guide that you’re going to mention later There is a letter that I have already written that parents could Honestly, just print out and hand to extended family, and it basically encourages them.

You know what? You are a person in our child’s life who has impact and influence. And so we just want you to understand that this is kind of what’s going on and your support means a lot. And this is how you can help. And so if you don’t even want to broach the conversation. Send the letter because you never know what doors may be opened and sometimes families just need to hear it from an outside source. And I am so willing to be that outside source.

Let’s go ahead and talk about this resource because I know you’ve put a lot of work into this and I want our listeners to hear about it. So, um, so tell us what is it, what’s included in it. How, how, how can they get it?

I am so excited to share about it. And honestly, this is the first time I’ve been able to share it with somebody.

So I’m super excited. It’s called behind the behaviors, understanding a uniquely wired child. And basically, it is, I think, 14 pages of information and I have made some easy-to-read graphs that just kind of map out what are some of these invisible disabilities as it relates to mental health issues. What are some that we see more often?

And just kind of a short summary of what is it. And then a short little summary of how does this impact my child? And another short summary of how can you work well with my child. And then I divided all of those same issues out on a different graph. And I put at school, at home, in the community, on teams, or with, you know, in social settings.

And if you were going to sum up just one thing that they need to keep in mind when working with your child. What might that be? And then I moved into what are some different resources. You know, some books that you might be able to refer your family to or provide for your family. Sometimes they just…

They just need the book put in their hand, you know We have found a couple of resources that worked that well And then as I mentioned that letter that was truly written So that you could just print it out and give it to a teacher give it to a coach give it to extended family And if you don’t even know what to say, I hope that I have captured in that letter Something that offers you support and offers them the ability to say, you know what, maybe there’s something to this.

And I think that, honestly, when I went back and I read the letter, I just cried. I just cried because I remember being in that position and just wanting so desperately for my people to get it. And my people did get it. And some of what I put in that letter is… You know, like what helped them get there. And so I’m just super excited because I feel like this is finally a resource that taps on the mental health issues and why it’s so difficult to get teachers and coaches and community and extended family all on the same page.

And I think there is such power in getting people on your same page because you need support. Your child needs support and you don’t have the extra energy to convince anyone. You just need them to have the information and be one step closer to being that support.

Excellent. And how can our listeners get, get their hands on this, this resource?

We’re going to provide a link for it. And if you go to that page, they, you just. Put your name and email in and it’ll be sent right to your inbox. You can also get it if you go to Parenting with Personality on Instagram. You can also find it if you go to my website, parentingwithpersonality.com. And I also have a Facebook, uh, parent support group. And if you come into that group, you can access that resource there as well.

Excellent. So we’ll, we’ll put all of those links in, in the show notes. So if you’re listening or if you’re watching the video, check, check for the notes. And, um, just to clarify, so this is a free resource, there’s no charge for it?

Absolutely. No, it is a free resource. I am just so excited to get it into the hands of parents that have just needed something to make that conversation easier. I just, if you want to share the link with other people, share it with other people. But I would just love to be able to get it in the hands of more and more parents needing support.

I love being able to offer that. And um, and I know a lot will find value with that. Best way to contact you. Is that through your website?

Yes. On https://parentingwithpersonality.com or on Facebook, Instagram, I’m even over on Pinterest. So in any of those places, and I welcome emails. So if you look over the resource and you want to ask questions, I have my email address in there.

I also have a place where you can just set up a call and set up a free call where we can just talk about what it is that you may be struggling with. So that all those links are in that resource as well.

Well, Jami, thank you. Thank you for spending some time with me today and talking through this. I think you have so much value to add to our families that anything we can get from you is great, but this resource just sounds like a fantastic guide to be able to have out there.

So, um, if you are listening and you do download this and check it out, I’d love to hear your thoughts on it too. So feel free to send us a note or to leave a comment on it. And as she said, feel free to pass it on to other people too. So, um, so Jami, thank you. I appreciate you coming with us today.

You bet. Thank you so much for having me. Anytime. Call me anytime.

Voice Over: Thanks for joining us today. I hope you found inspiration, wisdom, and practical guidance to better support your children with invisible disabilities and mental health challenges. Jami’s insights have been invaluable, and I’m grateful for her time and expertise.

If you’d like to show your support for the Water Prairie Chronicles and help us continue to bring you more content like this, Visit https://buymeacoffee.com/waterprairie. Your support helps to keep the conversations flowing and provide resources for special needs parents. Don’t forget to hit that like button, share this video with fellow parents and subscribe to our channel.

And if you have any questions or topics you’d like to see us exploring in future episodes, please drop us a note in the comments below. Thanks for being a part of this community and I’ll see you next week.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Turn worries into opportunities with a well-crafted IEP Parent Input Statement.Show Notes:In this empowering episode, we dive into the world of Individualized Education Programs (IEPs) and the pivotal role of the Parent Input Statement. Join us as we welcome Heather Wright, a Master IEP Coach, who shares invaluable insights on how parents can effectively advocate for their child’s education.

Discover the secrets to crafting a compelling Parent Input Statement, one that goes beyond mere concerns and transforms your child’s educational journey. Learn how to embrace your essential role in shaping your child’s IEP and why preparation is the key to a successful IEP meeting.

This episode is a must-watch for parents, guardians, and anyone involved in the IEP process. It’s time to supercharge your advocacy, foster collaboration, and unlock your child’s full potential in their educational experience. Don’t miss this chance to take your child’s education to the next level.

Connect with Heather:

WEBSITE: http://www.heatherwrightconsultant.com
INSTAGRAM: https://www.instagram.com/heatherwrightconsultant
FACEBOOK: https://www.facebook.com/heatherwrightconsultant

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Heather Wright, M.Ed. is a special education consultant who began her career more than 16 years ago as a middle school special education teacher. She is passionate about the world of special education and supporting families through this seemingly difficult process by providing them with the tools that allow them to be an advocate for their child all while developing a plan to move their education forward. She provides a variety of services to meet the unique needs of families, starting with a free 30 minute phone consultation. She obtained her masters degree in Learning Disabilities and Behavior Disorders from Georgia State University, in Atlanta, Georgia and is also a member of the Master IEP Coach® Network. She currently works with families of children with learning disabilities, autism, developmental delays, behavior disorders, and other health impairments, to get the supports and services in the public-school setting, through collaboration. Parents know their children best and are their best advocates; however, they don’t have to be alone!

Heather grew up in Pittsburgh, Pennsylvania and moved to Georgia in 2006, where she lives with her husband and two fur babies. When she is not working you can find her cooking and baking, crafting, binge watching her favorite show, or enjoying the lake.

Episode #82: Mastering the IEP Parent Input StatementTurn worries into opportunities with a well-crafted IEP Parent Input Statement.###### (Recorded September 26, 2023)

Full Transcript of Interview:

Narrator: Are you ready for your child’s next IEP meeting? In this video, we’re going to share some tips on how your input can make a big difference in how teachers work with your child. You’re going to learn why the parent input statement on the IEP is important, what you should include in it, and when you should write it. Stick around to the end for details on how to get some free parent training before your next IEP meeting, too.

Welcome to the Water Prairie Chronicles, a podcast created to encourage and support parents of special needs children. I’m Tonya Wollum, and I’m glad you’re here.

Tonya: Welcome back to Water Prairie, Heather.

Heather: Thank you for having me today.

Listeners, you met Heather a couple weeks ago. Actually, I think it was maybe three weeks ago that she was with us with Helen Panos, and we talked about the difference between an 504. So if you missed that one, go back and listen to it, because I think that’s really important information for you to understand if your child is in a public school setting.

Today, we’re going to talk more specifically about the IEPs. During our last conversation, we didn’t have time to dig into pieces of it, and one piece in particular that Heather was really passionate about and I agreed with her is the parent statement. So if you have a child on an IEP or if you have a young child about to go into school, it’s really important that you understand what this is. And we’re going to pick Heather’s brain to get as much information as we can from her today.

Oh, that sounds amazing, but scary at the same time, Tonya.

To help us understand more about the parent input statement, I asked Heather if she would tell us more about what it is and why it’s part of the IEP process.

So let’s start out with what is the statement, like basically where is it on the document and what, what does it serve as a purpose?

Yeah. So the parent input statement, and I literally could chat about this. And probably get on my pedestal and soapbox for hours upon hours upon hours. So make sure you keep me in check with like the time.

So parent input statements or parent input is a section in the IEP that you probably have missed before because it’s not necessarily titled parent input. It’s usually titled Parent Concerns. That is a statement or a section of the IEP where parents can submit questions, concerns that the teacher of record, your case manager, puts your concerns into this section.

Now most documents that I review as an advocate, parent input or parent concerns is maybe one or two lines. My parent is concerned about Blankety blankety-blank. They’re concerned about Johnny doing blankety-blank, and then it’s it, or I’ve seen some parents have no concerns. And that’s, as an educator or former educator, I was like, okay, that’s what needs to be in there.

We’ve got to fill the box to check the box. But how awful is that statement that parents have no concerns? You’re a parent, Tonya, you have lots of concerns for your child or children at that point, like It needs to be so much more than just, they’re concerned about nothing, or they’re concerned about math.

Like, we need to start getting input from a parent, because who knows their child best? You, as the parent, you know your child best. You’re the only consistent person that’s going to be at that IEP table from kindergarten through graduation. So you know the ins and outs and workings and really need to make and develop that statement for your whole child.

So, if you are getting asked at the IEP meeting, what are your concerns? That’s not good enough. You need to be doing it beforehand.

I shared with Heather before we started recording that, um, you know, my, my kids are both in college right now. Both of them came all the way through with an IEP from, well, my, my son, it was a little bit later, but my daughter from day one, I never knew cause every, every state’s different.

And even within a state, every few years, the document changes how it looks, but on our cover page, we always had a section that said parent concerns. I think we had two sections where I could make a statement if I wanted to, and then I could also voice my concerns. If you’re like I was, you saw a small box on the form for your input statement or concerns and thought you could only write a sentence or maybe even less.

Heather explained to me what this is and what you can do if you have more that you want to say. But the box was just this little, like enough to write a tiny little sentence in there. I thought all those years that whatever I wrote had to fit inside that box. I know now that I was wrong, but I thought that’s all that I could write.

So what do you do if you want to say more than “A OK,” if you want to actually write a few sentences?

Right. Well, let me touch on the part of having the little box. Yes, there is a little box in there and I know that some IEP writing programs for different districts across the different states, they might have a text limit.

So sometimes there is a limit of number of characters that can go in that box, but you can write a statement that’s a page, two pages long and you can request that that be added to the file and attached to the IEP so that whenever anybody gets that document, they’re also receiving your parent input.

You don’t have to limit it to 200 text messages or, you know, icons on the text box, like that, that’s not okay. Um, you can actually have it uploaded to the file and have it attached. Now, most of the ones that I have seen… I ask, when I write parent input statements for families or help them write their parent input statements, I ask and request that they get copied and pasted directly into that box.

And they’ve, not paraphrased, don’t paraphrase it for me, don’t paraphrase it for the parent, please copy and paste everything into that statement. And like I said, the ones that I support families are typically a page, page and a half, two pages. It could be longer, um, Depending on, you know, questions that you might have for the team or if there are concerns or how much detail you go into depth about your child and what their learning styles are and things like that, but you can copy and paste it into that document or you can make sure that you ask the team to attach it if it doesn’t fit into that tiny little box that’s “Concerns.”

So I was one of those parents who didn’t want to make waves because you know, you’re sitting at the IEP table, you’re the parent coming in with all these professionals. Okay. So forget that I have an education background. I was a parent at that point sitting at the table hearing what my children couldn’t do.

And so, and I’m thinking we probably have some listeners who feel the same way. So you come in, you’re a little bit intimidated coming in to begin with. If you don’t have a good connection with your caseworker at the school. You’re even more intimidated because now everyone’s kind of, they’re up on these pedestals around you and you’re sitting down in the low chair.

It’s kind of how it feels. And, um, and so, I’m sure there’s others that were like me who, you know, I would have my conversations with the teachers with concerns, but we never put it in the document. You know, so aside from, even if I’d known that I could write more, I don’t know if I would have known what to write.

It’s one thing to understand what the parent input statement is, but do you know what you should include in it? Heather had some great information about what you can consider including in your parent input statement.

Can you give us some guidelines of like what should be included in this? Is it, it isn’t just a wish list of, you know, I want, I want Johnny to do blank, blank, blank. Or is it maybe, maybe that’s. I don’t know.

It could be that. It absolutely could be that, Tonya. It really depends on what you want to add for your child. So, you know, different advocates might have different ways to complete a parent input statement or give you suggestions. When you work with me, I have 10 questions that I ask a family.

I help guide what that looks like for you as a mom or a dad or a grandparent or a guardian. Um, I like to have the parent. Indicate words that they would describe their child. So, kind, um, energetic, maybe it’s, um, caring, you know, just what three words describe your child. Starts it off in a really positive manner.

And then we kind of go into, what’s their learning style? What type of learning environment do they work best in? Um, depending on the age of your child, you might look at different, um, motivators for your kiddos. Like, do they love earning? You know, time with teachers. Do they love earning recess, extra recess time, kind of things to help motivate them?

What are their interests outside of school? Maybe they love basketball or they play hockey. That gives insight to what their day looks like when they’re not sitting in a classroom, right? So they might have hockey practice after school or they might have baseball practice after school. That takes a toll on a kid’s day, right?

Um, maybe strategies that have worked in the past and strategies that haven’t worked in the past. Maybe fidgets are amazing for some kids, but maybe fidgets don’t work for your child because they get distracted by it, or maybe they do need seating location. By the teacher, but it’s not upfront because they like to stand and if they’re in the front standing Then they’re distracting to others.

So I try to encourage families to talk about that. I also encourage families to Think about what their goals short-term and long-term goals are for their kiddos, and that’s not just Academics, social, emotional, behavioral as well. So, maybe younger kids, and I think I might have brought this example up the last time we chatted, but it could be that they, you want them to get invited to a birthday party, or you want them to be more active in their clubs at school, and you want to see about that.

If they’re high school age, it could be transitioning into a job, and what kind of jobs are they interested in, or what kind of fields. Maybe they’re not college-bound, but maybe they do want to work in a veterinary office, so they need some skills to be able to handle that type of environment, right? Um, and then we look at also concerns and questions.

Now, you say, well, what if I have so many questions? Right, that’s okay, add them in there, right? But a strategy, because you’re like, okay, you just said it, Tanya, that you talk to one teacher about concerns, and then you talk to another teacher about concerns, but it was at different points of the year, maybe, and it never, you know, you forgot about the conversation that happened in September about the school bus when the meeting is in January.

Keep a journal. Like, keep a notepad, or, now with technology, you could probably make a note on your phone and just say, hey Siri, add this to the note. Positives and now my phone’s trying to think that I’m making a note for the listeners, my phone’s here and now she’s, you know, trying to think I’m making a note.

Um, but you as a parent can keep it, keep notes like that. Maybe you heard something on the playground from another parent, or maybe you’re watching your child at a birthday party or you’re seeing them in the grocery store and they don’t know the difference between a $20 bill that they need to be purchasing this with versus a $5 bill that they have and you know all of those things can add up. So, keep a journal of that Keep a notebook of what you want to include in that parent input statement, and I promise you that it seems like a lot but you could probably get it down to like two pages. And I probably wouldn’t do more than two pages because it gets hard to read from the teacher’s side, and you want to be thorough as you’re?

As the parent, but you don’t want to go off on tangents either. You want to make it short, concise, but make sure that it’s including every aspect of your whole child, not just the math, the science, the reading.

Even after hearing all of this, you may be wondering if your statement can actually make a difference. Listen to what Heather says about why you should include a parent input statement.

So even though we’re calling it a parent concern section, it really is a parent statement. It is. We’re sharing our heart with them the same as my, my kids at the beginning of each school year. I would write their teachers because I wanted them to see them as an individual aside from the documents that go with them, um, and possibly the behaviors that may come in the room, right?

I wanted them to hear what are their successes. What are they going to get out? What are they passionate about? So that would have been what I could have put into that statement as well. Yes. Now, um, it’s my understanding, and correct me if I’m wrong, that. If it’s in that section, the team has to read through and address what’s in that statement, is that correct?

They do need to address it. And you, when you submit it to the team, you say to the team, I request that this document is added to the parent questions section or the parent concerns, whatever is it’s typically called in your district. Um, and we want to review all of the questions in this document. And then you as a parent.

Print that, print your parent input statement off, and use it as an agenda when you’re going through the meeting to check off, yep, we talked about social skills, yes, we talked about bathroom, we talked about math class, we talked about communication and accommodations, use it as your agenda and guideline of, okay, we talked about all these things because you know, sitting at the IEP table can be overwhelming, stressful, there’s a lot of information going on.

Being thrown out at the team, and you just always want to make sure that you’re going back to that statement. Have you addressed my concerns as a parent? And make sure that you’re there, your questions are being answered. Meeting notes are not required for IEP meetings, but you can ask at the beginning of the meeting who is taking those notes.

So you’re making sure That your questions are also the answers to those questions are outlined in those meeting notes. So you also have documentation that it was discussed and addressed by the school team.

I really like the idea of having a printout of what your statement is as, as a checklist, you know, and if I’m thinking if we can write these as a bulleted list, it’s easier to read, it’s easier to address and, um, and we’ll, we’ll make it easier for you to check off as well as you go.

Yeah, there, I mean, there’s definitely, I add some questions typically in different sections, and when I’m writing, when I’m supporting families writing their parent input statements, um, when they’re talking about even like their, their interests, I might ask the question, how can we, uh, implement some of their interests into their school day?

That could be a question that’s embedded into that paragraph, but then there’s also a section that I put at the bottom that I say, these are questions That we would like discussed and answered at the meeting, as well as the ones above. So then you do have five, six, whatever those questions are, right? You want to have them as open-ended as you can to say, you know, not just yes or no answers either.

Yeah, it’s helpful. I’ve had a parent, like they reached out and we did a parent input statement for them. And she messaged me back after the meeting and she was like, Heather, This is hands down the most useful tool that I have ever seen and ever drafted going into this meeting. She was like, it helped me stay focused.

It helped the team stay focused. She was like, thank you so much. Like she was like singing my praises and I was like, thank you. I’m so glad because your input as a mom and a dad and the adult that’s sitting there at that table is so, so important and sometimes so overlooked. You know, because everybody’s focused on the math and the language arts and the reading and all the things, but they forget about your child as a whole.

What are their strengths? What are they like to do when they’re not sitting there having to read a book? Like, let’s talk about that because… That’s part of your child too.

Well, I think too, it can help and not all of the teachers are at the team meeting usually, but it can help those who see this document understand your child aside from the struggles that you may have in the classroom on the academic side of it, and um, I think that makes it easier on your child now because now they have someone who sees them for who they are.

Now that we know more about what the parent input statement is and why we should write it, I wanted to know if Heather had any suggestions on when we should write it. She suggested we start early and submit it ahead of time.

Six to eight weeks before your IEP meeting, you should be thinking about what am I going to be putting in a parent input statement and taking the notes that maybe you have in your phone or in your notebook or however you’re taking those notes and really sit down and just outline a letter, right?

It doesn’t have to be perfect right away but try to start thinking six to eight weeks because your parent input statement should be sent to the school team at least seven IEP meetings. So don’t just bring it the day of the meeting. You can, but for it to be effective, you want

Um, and have the answers to the questions that you have. How frustrating is it when you get to a meeting and you have a question and you ask it and everybody looks around the table like, uh, who’s going to answer it? I don’t know. I, you know, I’ve been there. I literally, I’m like, I don’t know the answer to that.

Is somebody going to ask, answer that question? And yes, they say, okay, well, we don’t know the answer. We’ll get back to you. And then how many times. Unless you’re on top of them, does it always, do you always get that answer? So by submitting it at least a week before, you’re able to have those truly good conversations because they have the answer there for you.

Not that you can’t ask additional questions at the table. Right, right. But if you’re specifically asking about, um, like a curriculum that’s being used or you had questions about the data that was being sent home, Then you can have a productive conversation around that and not deer in headlights. Like what’s, what am I supposed to say?

Well, and we as parents don’t like to be caught unaware. So it’s only fair that we not do the same thing to the team because we’re working together as a team here. Yeah. So, um, so that, that common courtesy as well. And like you’re saying, it gives them a chance to kind of strategize. Maybe there is an, maybe there’s a yes answer that’s coming and they have a chance to figure it out.

Instead of having to say a, a we’ll see or a no, because they don’t have the information that they need to be able to make that choice.

Great. I love to include, we would like the team to consider adding blankety blankety-blank. Because then that also, that terminology is collaborative. You’re not just telling them, we want this.

We would like the team to consider this, adding this accommodation based on this information. So you’re, you’re trying to work as a team, but you’re right. Nobody likes to be surprised, especially parents and school teams at the table. So, let’s be open. Share that information about a week ahead of time, if you can.

I know certain circumstances, you know, doesn’t permit, always permit that. But I could say at least seven days before. If you can get it even, you know, two weeks before. But that’s even, you know, more time and energy and, and I love that.

So Heather, I know that, um, from when we talked before that you’re able, you’re In the Atlanta area, you’re able to work, um, throughout the U.S. correct?

Yes. Five different states currently. Yeah.

Tell us how they can get in touch with you. If, if anyone wants to, to try and work with you or just to connect with you.

Yeah. So if you are in the Atlanta area, I am able to attend meetings virtually or in person. If you’re out of state, I would love to come visit you in person, but most of the time I’ll be virtually.

Um, but if you’re looking at support. I can book free consultations for any prospective clients. If you have questions, please reach out to me for a consultation. It doesn’t hurt you to get some knowledge. And the way you do that is visiting my website at HeatherWrightConsultant.com, so www.HeatherWrightConsultant.Com. Everything’s on there. You can download some free resources that I have um, and then you can book your free consultation at that point and then you’ll talk with me and I’m the person that responds to your email so don’t have a AI person that’s um, you know. Um, responding to you, but, um, you’ll hear back from me within typically 24 to 48 hours about getting that consult scheduled.

And we just see how I can support you guys in your, your journey. And that could be with parent input statements. It’s super important. It’s super, super important.

Well, even just, just having another set of eyes to help review something, you know, it’s, um,

yes. And I’ve done that too. IEP reviews.

Yeah, we’re not talking about someone having to come and work with you for months and months. It could be a one time check in or it could be an annual or something like that. So um, so good. I appreciate you sharing that. Do you have any special projects coming up?

I will be doing some free parent training workshops, um, probably starting in January. Um, this past September, I did four weeks. I talked about parent input statements, I talked about basics of IEP.

So in January, I’m gonna be starting another four-part series. Um, parent input statements are gonna be on there for sure because it’s. It’s something that I’m just passionate about. But if y’all want more information about that, or even just getting on the list, so you can get the information when I send out the actual dates and times, they will be virtual.

They’ll be Eastern Standard Time. Um, then please email me, or you can visit my website. Again, website is HeatherWrightConsultant.com and my email is hwright.consultant@gmail.com. And I think Tonya will probably have that in the, the bio and everything. So, if you want on that list for those three parent trainings, then yeah, make sure that you reach out to me and I’ll add you to my list so you can get all of that in firsthand.

Well, Heather, thank you for coming back and joining me on this. I think this was really important, but I feel like you gave some really good information here. So I hope people were taking notes. Go back, go back and listen again. If you’re. If you’re checking this so you can get all the information, but I’m sure we will be in touch again.

And, um, we’ll have to see if we, if we can have, have Heather come back again to, to go into some more, some more digging into IEPs with us.

Yes. Thank you, Tonya. And thank you to your listeners for just being on the call for this long and listening. And I do hope that you got some valuable information about parent input.

And maybe it got your head spinning a little bit going, what do I need to do? And how do I need to do that? And if you are in that situation, please feel free to reach out. I’d be happy to support you and walk you through that process.

If you know a parent who would benefit from hearing this information, please share the link with them.

If you’re new here, click the subscribe button and hit the bell. So, you’ll get notified when we release new content. And if you’d like to get our newsletter for up-to-date information, sign up at https://waterprairie.com/newsletter.

Thanks for joining us today. And I’ll see you next week.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

What to do When You Get a Prenatal Diagnosis for a Special Needs BabyShow Notes:In this episode of the Water Prairie Chronicles, Tonya speaks with Dr. Stephanie Dueger, an author, educator, parent coach, and psychotherapist who works with expectant and new parents and their little ones up to age 5. The discussion revolves around supporting parents who are expecting a child with special needs. They emphasize the importance of seeking help and resources to cover the potential financial and emotional challenges. Dr. Dueger also talks about the significance of informing older siblings about the situation, keeping communication open, and being sensitive to their emotional needs.

The conversation extends to the role of extended family and friends in supporting parents during this time. Dr. Dueger suggests offering practical help, such as making meals, listening, and finding helpful resources for the family. She emphasizes that each family’s journey is unique and encourages embracing the experience of parenthood, no matter the challenges it may bring.

Overall, the interview provides insights and guidance on navigating the complexities of preparing to parent a child with special needs, emphasizing the importance of community support, open communication, and embracing the journey of parenthood.

Connect with Stephanie:

WEBSITE: preparedforparenthood.com
EMAIL: info[@]preparedforparenthood.com
FACEBOOK: Prepared For Parenthood
INSTAGRAM: @preparedforparenthood
PODCAST: Prepared For Parenthood – Coming Soon!

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Meet Today’s Guest:

Dr. Stephanie Dueger is an author, educator, parent coach, and psychotherapist who works with expectant and new parents and their little ones up to age 5. Her book, Preparing for Parenthood: 55 Essential Conversations for Couples Becoming Families (2020), is the book she wishes she’d had for herself when first becoming a parent and was the winner of a bronze medal for Parenting and Relationship books in the 2022 Global Book Awards and a finalist in the 2023 Book Excellence Awards. She facilitates parent workshops and courses and was the Editor-in-Chief of the academic Journal of Pre- and Perinatal Psychology and Health from 2019-2022. Dr. Dueger lives in Colorado with her husband, two daughters, and furball of a dog. Learn more about her work at https://preparedforparenthood.com.

Episode #81: How to Prepare for a Special Needs BabyWhat to do When You Get a Prenatal Diagnosis for a Special Needs Baby###### (Recorded August 5, 2023)

Full Transcript of Interview:

Tonya: Our guest today is Dr. Stephanie Dueger. Stephanie is joining us today to share a topic that we haven’t brought to the podcast before. And, um, I, after I met her back, I think in June, we, we met for the first time. I really wanted to, um, to have her come and help us present this topic and it’s mainly, we’re going to be talking about what do you do when you get a prenatal diagnosis for your child?

We talk a lot on the podcast about what do you do during different milestone events. Your child has just been born and you’ve gotten a diagnosis or you’re maybe in the school ages and you’re starting to notice some academic challenges and to get changes there. But we haven’t thought about, um, before the child has even been born and, um, and there are a lot of questions that I’ll be going through.

So if you’re listening to this and you’re not in that situation, think, think beyond just your immediate family. You may have a friend or a family member who would benefit from hearing this. So, um, keep this in mind as you’re listening and we are going to touch in near the end how you can help support that, that friend or that family member too.

So even if you may not be expecting a child right now, you may be in a situation where you’ll be able to use some of this information. But before we get started, Stephanie, welcome to Water Prairie.

Stephanie: Thanks so much, Tonya. Happy to be here. Thanks for having me on.

I, I appreciate you taking, taking some time for us today.

Um, this season we’ve been playing a game with all of our guests and I’ve asked Stephanie to join in with the game and she’s, she’s agreed to do so, and we’re asking everyone to bring in three facts or pseudo-facts about them to play the game of 2 Truths and a Lie. And listeners, your job is to listen to all three of them.

Listen through the episode of this podcast. And at the end, I want you to see if you can figure out which one was the lie. If you’re watching on YouTube, leave your guess in the comments. And if you’re not, then go to either Instagram or Twitter and leave your guess there. And a week after this releases, we’ll come back and post the answer.

So you’ll be able to see whether you got it correct or not. So Stephanie, what are your three facts that you have for us today?

Okay. Number one, I was born and raised in New Hampshire, but now live in Colorado. Number two, I’ve hiked the whole Appalachian Trail. And number three, I love to scuba dive.

Wow.

This is some, some different ones there. Now if you were born in New Hampshire, I used to live in Massachusetts, so we were fairly close there. Um, I’m not, not there anymore, but, um, and I’m close to the Appalachian trail now. So, um, so we’ll have to see which ones of those are true. So hang on to your guesses, post those at the end after listening to this, but we’re going to jump into our topic now.

So Stephanie, when we talk about a couple getting a prenatal diagnosis, We’re talking about, um, it might be a medical issue. It could be a developmental issue that they’re noticing maybe on an ultrasound or in testing or something like that. Um, but to give us kind of a baseline, can you share a little bit about your background and your experience working with expecting parents?

Sure. So I have worked with families pretty much my entire adult life and even as a teen was working with families all the time. Um, and mostly that’s been in the role of a coach or an educator. Or a psychotherapist. And… When I became pregnant with my first child 17 years ago, um, I decided to get a doctorate in clinical psychology, and the emphasis in that doctorate was prenatal and perinatal psychology and health.

So my full focus now is working as a psychotherapist with expectant and new parents and their little ones up to about age five. And I, even though I work with people across the entire spectrum of life, that’s kind of my sweet spot in working with people. And I really, when I became a parent, um, I was a little bit on the older side as a mom.

Um, and so I’d had a lot of years working, and both my husband and I are psychotherapists. And so, since I’d worked with families my whole life, I sort of felt like the transition to parenthood would… Be pretty smooth, you know, I knew there would be some bumps around sleep and things like that And then when I got into it It was really humbling.

It was really surprising how challenging it was and we had a Um, you know, kind of a normal birth and experience and, um, healthy child and all that. And it was still really hard. Um, and so I just got to thinking, um, like how can we best help support all expectant and new parents, whether they’re someone who’s undergoing, about to undergo something a little more challenging or not.

Um, And just help them feel better prepared. So I wrote this book, Preparing for Parenthood, 55 Essential Conversations for Couples Becoming Families, in order to help Parents, um, expectant parents have those conversations that can be challenging. And some of the things we talk about in the book, um, or ask about are, you know, what would you do if you received a diagnosis or information that you weren’t expecting, um, and how would you try to navigate that together as a couple or as a single parent?

Yeah. Because, because those are things that most people don’t really think about you, you, you have these dreams, you know, of, of what it’s going to be. And I don’t know if I’ve met many families who the dream was the reality, exactly what they thought, whether it’s the birth process itself or the sleeping, like you’re saying, you know, cause you’re bringing home this baby and it’s going to sleep through the night, the first night, you know, all these things, but it’s, um, but it is, I think it is a, uh, A shift in your relationship and just in your, and, and of course your, your dreams are not the same, and now you’re tired on top of that.

So, um, so I think, I think it’s great that you are addressing this even before baby comes to, to try to help, help, help, um, couple couples come through this together and, and I’m, I’m glad you said that because it’s not just couples. Sometimes we are talking about a single parent that’s coming through here too.

And, um, and so what we’re talking about would apply. On, on either, either end of that.

So, you know, just, yeah, just highlighting if there is a relationship, the stress. Um, of becoming a family period on the relationship is, is very high, right? Even if you’re in a healthy and supportive relationship, things tend to take a nosedive.

And when we bring in something like a prenatal diagnosis, the stress on that couple is exponential. And the stress on an individual trying to do this by themselves is even more exponential, right? So it’s, it’s a really important topic to cover.

Yeah. So let’s start by looking a little bit at maybe some of the different areas that may be concerns.

Um, and the first one I’m thinking is just that emotional part. We were talking about the dreams coming in and now there’s been almost a shock sometimes with that diagnosis that you may be getting or maybe just some uncertainties there. So what are some first steps or strategies maybe that you would recommend for parents to be able to cope with the emotions and uncertainties that they’re feeling when they first get that diagnosis?

So maybe just touching on, um, all of the different, uh, emotions that might crop up, right? So there might be fear, anxiety, overwhelm, anger, um, just, I don’t know what to do. Um, it could range to guilt of like, perhaps I did something or could have done something to prevent what happened. Or what is about to happen um, y’know there’s so much going on, and again, the stress in either an individual’s life or the couple’s life around trying to navigate this.

And so, I always I think that the first and best place, um, is to just get support, get outside support. So whether that’s from your healthcare providers or, um, trusted organizations, um, so for example if someone is into researching, um, going online and going to a reputable site like one that ends in. Um, EDU, or ORG, or GOV, those ones tend to have more research based information versus, um, opinion.

And so, you never know with the other ones. Um, sometimes social media groups can be helpful if they’re supportive, um, but often you’ll hear worst case scenarios in those situations as well, so you want to be, um, thoughtful about what you’re taking in. Um, I think it’s helpful in any stressful situation to slow things down.

Right, so our tendency is to speed up under stress and anxiety like I need to know all the information now I need to get this this this this and this lined up and you know there tends to be a lot of push in that experience and What we want to try to do is the opposite Like, just take a deep breath, like everything’s going to be okay, we’re going to figure this out, um, and what are the specific steps that we need to take and we don’t need to take them all today, right?

So like really pacing and slowing down and then pulling in your support network. So whether that’s extended family, friends. Um, maybe new friends who have, um, experienced similar circumstances, maybe a support group, maybe a therapist, maybe a psychiatrist, people who are, um, trained to help you or are naturally supportive socially to you.

I think that’s a really important place to start, just to help kind of shore things up emotionally, um, for people who are, you know, hearing this information for the first time, because it, it really, like you said, can be shocking, right? You’re not expecting this information and all of a sudden it’s like, okay, here’s what, here’s what we’re going to try to navigate here.

And how do we do that? And with as much ease and grace as we can do it.

Would you recommend as they’re trying to talk to maybe their parents or the grandparents of the child, um, or their siblings or their friends, would you recommend that they come out and just tell everything right away or like, what’s the best way to try to communicate what they’re going through and how they’re trying to find support?

So. I guess, Tonya, that depends on the relationships, right? So if you are someone who is very close to your own parents, say, um, and they’re very supportive of you, um, that might be a great option to just go and say, Oh my gosh, I just got this super overwhelming news. I need some help. And just have them kind of swoop in and support you.

A lot of people don’t have those kinds of relationships with, say, their parents, and you might want to wait a little bit and just kind of digest the information yourself a little bit and figure out next steps. I would recommend pausing before you share this information with Um, say older children, if the baby’s going to have siblings, um, or, you know, there are siblings present, um, I would wait to share this information until you’ve had quite a bit more time to really digest what’s happening.

Um, and again, same with your own siblings, um, your, your friends, things like that, like gauging the relationship and, um, and maybe seeking. Say professional support first, like, um, well, I’m not sure how to share this information. Maybe I should speak with a therapist or with my, um, church clergy person or whatever, right?

It’s like find those people that you can trust, um, that you feel good about and take the time to let it settle in a little bit. Um, if you don’t feel like you have those relationships right off the bat.

What I’m thinking too as we’re thinking through this, um, just kind of picturing this, this, this young couple who’s just gotten this diagnosis, we haven’t met the child yet and sometimes It’s, it’s a broad category that we’re looking at, but until we actually meet this child, we don’t really know the impact that it’s going to have for a lot of, a lot of these potential diagnoses that are coming in.

And so I like the idea where you’re saying, just take time, just kind of absorb it. And if you can, doing some education, whether it’s talking more with your doctor or with your therapist or someone. So, you kind of get a better idea because I don’t know about you, but whenever we get, I think it’s human nature, maybe you would know this better than I do.

But, but just when we get an unexpected, anything that happens for some of us, it’s, it’s a lot larger than it really is our initial reaction to it. And others just kind of take it in stride. So, you know, you know who you are and how you normally react to things. So maybe digesting it and. and processing it.

You may need some time with that. Um, and you also reminded me of a, an interview that we had earlier this year. Um, it was a family who, who has an older child with, with Down syndrome. It’s actually, um, the Sanchez family. And I can link this for those who want to, to hear that story more. But, um, but Jennifer said, you know, Sometimes you may not be ready for support groups, sometimes you just need to be part of your family and just, you know, when your baby is born, just love your baby for being your baby.

There’s time sometimes to find those. And I, and I thought that was really good advice because sometimes we don’t think about taking a step back and just relaxing for a minute and absorbing what it is. So, so thank you for reinforcing that a little bit.

Sure, and I would, I would add to that, um, I guess the one caution I would make is to not isolate.

Right. So if you’re needing time to, to digest it, obviously that makes a lot of sense, um, but say you are a single parent, I would say don’t just, um, kind of cocoon into your world and not reach out. Like, find somebody that you can talk to, um, just to start being able to process it.

Right. Right. Um, I know from our experience, and we had different, it was, it was later for our children, but, um, But you’re trying to understand everything and asking the doctor is a good first step, but sometimes you need someone who can help you kind of interpret that better.

And so counselors or support groups I think could be helpful with that. And then the other thing you mentioned too was, um, if it’s a I don’t remember how you worded it, but what I was hearing was, um, for like an online support group or maybe a community support group, um, if it’s supportive for you. And I think that’s, that’s a good piece.

Um, you, you know how you respond to people. And if you have a check that maybe this isn’t a good place, um, there’s a lot of different types of groups out there. So there may be another one that you need to go and, and I don’t know, I don’t know, especially I’m speaking from a mom’s point of view. I don’t, I don’t know how our dads who are listening may feel, but sometimes we feel like.

We don’t have permission to go try a different one if we start one. But this is a case where if you’re not getting that support and you don’t feel like you’re, um, you’re able to get what you need, I think it’s okay to think about looking at other types of support that you may need to get into. So, um.

I think that’s true across, across the board.

If you start with… Say one therapist, and it doesn’t feel like a good match, um, it’s okay to switch to somebody else. Right? Like it’s, and it’s important. Like not everybody is a, a strong connection, right? So it, um, really finding what’s going to be most helpful for you individually and you as a family, I think is, um, one of the keys.

Yeah, I was, and I’m sure others who listen are the same way. I was always a rule follower. You, you do this and this is the only thing that, that, that you do. It actually took my children to teach me that sometimes you can go outside the box of what it’s supposed to be. Well, so the emotional side of it is one piece, but, um, but you know, my, my husband and I have worked with a lot of couples before and financial burdens sometimes can be a big concern and can, can cause a lot of stress in a couple to begin with.

Having an unexpected diagnosis that may have a financial burden with that too, I am just thinking that’s, that’s going to have the potential of maybe even being a larger strain now. So what are some practical tips that couples could follow to help them work together as then making these plans for those financial costs that may be there?

So again, I want to speak to in general and then kind of hone down. So. When you are bringing a child into the world, whether you are birthing them or adopting them, or however that looks, um, there’s going to be an added financial cost, um, and that will increase as the child gets older in many ways. And so, When we’re planning, if we know prenatally that we’re about to have a baby or we’re about to adopt a baby in an X number of months, obviously you want to kind of really examine your own finances as a couple or as an individual, right?

So you’re looking at things like… Is it possible for us to cut back on debt or spending or increase our savings? Do we have insurance, and if so, what does that look like and how much is it and is it going to cover these things? And then when we’re talking about people who are potentially dealing with things that might require a lot of extra resources, um, I’m thinking of things like potentially, you know, specialized wheelchairs and things like that.

Anything could come up that you might need. Um, obviously the first place you want to start with medical things is through your insurance and see how much can be covered and, um, kind of go that route. But you might be underinsured as many people in the U. S. are, um, and that’s a great place to reach out to your community.

Right, and so going to whatever your local church is, um, organizations that are set up to help in your area, or national organizations, um, where they can do some of the fundraising and other things for you to help cover some of those costs, I think is, is really important. And often your hospital will have.

Um, information on how to contact those organizations and get support, um, and then as well, like all the wraparound services, like, um, where I live, we have a, a zero to three, um, actually a zero to six program. So kids who are even, um, not necessarily diagnosed with anything, but maybe are a little bit behind developmentally, um.

They can come to your home for free every single week doing P.T., O.T., speech work with those children, um, and so I never knew about those services until we actually needed them, right? And so just becoming aware of what’s available in your area. And if not in your area, then nationally, um, you can get a lot of support in, um, in those ways.

And so I would. Start, you know, obviously with your personal finances, your personal insurance, um, and then branch out from there in terms of layers of like, okay, how, how can we do this? And some people even go, you know, the GoFundMe route, right? Like, um, if you need extra support, um, that can be a way to reach, um, people who you might not otherwise be able to reach.

And, um, listeners, if you haven’t seen the waterprairie.com website, um, there we are building a resource and there are some links there to some that may help you, um, state to state. If you don’t see resources that you know are in your state, send us an email so we can add those to them. So we’re trying to get a more well-rounded resource base there from what other parents have told us.

So we’re always open to adding more there. You know, and we have talked about, um, financial needs and planning for our children on a couple other episodes as well, but, um, but I, I appreciate you talking about this too because I think it’s, it’s important that we do address that this is a concern that would be there.

But parents that are listening, there are, there are supports out there in your community and it’s just a matter of helping you to get, to find those connections. And again, your doctor, your, your therapist, they would have, if they don’t have the answer, they can help you find that answer. Because they’re in the, they’re in the community, they’re involved with what’s there.

So you mentioned earlier about if this isn’t your first child, if you have older children in the home, um, maybe not to share with them right away, but when the time is right to talk to them, because maybe before the baby’s born, you should have that conversation. Um, especially if the, if the sibling’s not going to be able to come home right away, um, so that they’re ready.

Any advice on how, how and maybe even when, and I know it’ll depend on age and personalities and everything else, but um, are there any broad guidelines they could follow as far as talking to those older kids?

So, um, I would say probably the majority of people have children relatively closely together.

Sometimes we’re talking about blended families and things are more spread out or stuck in families and things like that. Um, and so. I think one of the most important things that I try to share with all clients is just, um, your children can feel what’s going on, right? So if you are stressed or anxious or really worried about something, they’re going to pick up on that in a heartbeat, right?

And so, Before even sharing the, um, kind of critical information that they will need to know, you could just start with, um, you know, you will probably hear your child say like, Hey, mommy, what’s wrong? Or daddy, what’s wrong? Right? Um, and rather than saying nothing, everything’s fine. You can just say, well, you know, we’ve been talking about some things that have been kind of hard and, um, and Don’t worry, it’s, it’s like everything’s going to be fine, mommy and daddy or mommy and partner, we’re, we’re handling things and everything’s going to be okay and we’ll let you know as things unfold, right?

And so just really leaving it as like a, um, an open ended conversation and then taking into account obviously the age of the child, as you said. Younger children keep it really simple, right, like, um, your little brother or sister, um, you know, is, we found out that they may have this issue going on and, um, they may have to stay in the hospital for a while after they’re born, which means that all of us might be in the hospital for a while after they’re born, right?

And, um, And there are also people within the medical system who are trained to help with those transitions for children, right? So if you, if you are somebody who knows, um, My child’s gonna be in the hospital for three months or something, right? And you’re gonna be spending a lot of time within that Environment helping your older child become accustomed to that not scared when they go in I think it’s really helpful So again keeping it simple Sharing the facts of what you know to the extent that you think your child can kind of manage those facts And Kind of nothing more and nothing less, right?

So don’t kind of project into the future. It could mean this and this and this and like you know, they may have a lot of questions and do your best to answer them simply and Kind of succinctly I would say and just say, you know, it’s a worry for us or you know We’re feeling a little overwhelmed at the moment. Meaning, you don’t have to do anything. You didn’t do anything wrong to cause anything, right, for young children. That’s where they’ll go. Is it was because I was bad at the playground the other day and this is, you know, they’ll take that on. So really, um, delineating what’s theirs and what’s, what’s, um, The parents that were handling it and everything’s going to be okay, right?

And we’ll, we’ll find our way through this together as a family, right? So I think that that can be really calming for kids. They want to know what’s going on. They already know something’s happening. Um, and it’s just really important to, um, respect them as those little humans that they are. I think additionally.

Um, what I always share with parents is it’s so important to, um, form that relationship with your baby before your baby’s born. And a lot of, um, people don’t do that or aren’t aware of it or don’t think, um, their baby is really, you know, able to communicate. Babies are They’re sentient beings for at least the last three months.

You know, they’re, they’re able to interact, they’re able to hear, they’re able to respond to touches on the belly and things like that. So building a relationship with your child, no matter who your child is or what, um, what abilities they come in with, um, Is a great step to just creating a strong attachment and healthy bonding between the parent and the child, um, lets them know, like, um, no matter what you’re coming in with, we’re here for you, we’re going to, we’re going to do our best as a family and we’re going to, you know, Get as many resources as we can to help support with this transition, um, and it’s going to be okay and we’re excited to meet you and get to know who you are.

So I think that that that piece sometimes gets overlooked, especially if we’re feeling fearful or we’re grieving this idea of, um, the child that we thought we would have. Right, and parenting is such a such a way of, um. At any point in time, you never know what’s going to be happening, right? So, like, parenting is going to throw curveballs at you left and right, um, and you’re going to have to figure out how to roll the punches, right?

So, um, and some of them will be really hard, right? And so, even if your child comes in and it’s a healthy birth and healthy pregnancy and healthy baby and everything’s looking great, Something could develop later on, right, that you then have to deal with, and it could be behavioral or physical or anything, like we, we just, we don’t know, right?

It’s always, um, parenting’s a, a big adventure like that.

It’s why there’s no guidebook for us.

Exactly. Exactly. And it, it’s why it’s hard to, it’s hard to prepare because everybody’s journey is different. Right? Right. Every child’s journey is different. Every parent’s journey is different. There are similarities and threads that kind of weave throughout and I think we can, um, gravitate towards those things to feel a little more prepared and kind of, um, create this illusion of control over what’s happening.

But um, really the, the, um, honesty of it is that it’s, um, that we never know. Right. Right. We never know for ourselves. We never know for our children what’s going to be happening. So we’re all just on this wild life journey together.

Yup. So we, we mentioned early, earlier that, um, even if you’re not that expectant mom or couple that, um, that you may know someone.

So family and friends. How can the extended family, how can the friends help support this new family as, as they’re moving into the days before the birth and maybe even soon after?

And so I think, again, it comes back to the relationship and what the relationship is like. Right? And so, um, I think often when people receive a diagnosis of…

You know, something that’s happening with their baby, um, they may feel, you know, again, a lot of different emotions and not, um, necessarily know how to process them all. So sometimes, um, sometimes it’s helpful to say, um, I want, I want to support you. Is there something that I can do that would feel supportive?

And sometimes people are good about that and know exactly what they need. Yes, you need to make me a lasagna and bring it over. Right? Like, they can be very clear about that. Right? Other times who are like, oh, no, like, it’s all good. You know, and sometimes in those instances, it’s better to actually make the lasagna and bring it over and say I don’t know, like, I don’t know how to best support you, but I made you some food for tonight or something. Right? Like something that, um, where you’re, where you’re allowing the person to receive support. Um, and, and then maybe it becomes easier for them to ask like, oh, this person was so kind. They brought over a lasagna.

Um, you know, I would really love to sit and talk with you, like do you have 20 minutes to just sit and talk with me? And then you just, as, you know, as a support person, whether you’re extended family, friends, whatever, your real job is to just be open and listen and, you know, reflect, like, yes, that sounds so hard and, um, I just want you to know I’m here for you and I’m gonna reach out and check in on you in X number of days, would that be okay? Right? Or would it be okay if I just send you a text once a day? And if you’re really having a hard time, we can chat on the phone or something, right? So like throw out options for them and people, um, can digest what, what they’re comfortable with, right? So yes, I’m comfortable with this, but no, I don’t want you texting me every day or, yes, I need somebody checking in on me daily.

Um, You know, let, let people give you the feedback, um, and then sometimes it’s like, hey, would it be helpful if I looked up organizations? I know you’re, you’re feeling super overwhelmed, I can see what’s available in our area, right? So just lending a hand without, because often people won’t know what to ask, right?

They’re like, I have no idea what I need, I’m just overwhelmed and grieving, I’m sad and. just like so many emotions going on. Um, and so anything that you can do, just like, Hey, I don’t know if like, this is what I found out about this organization. They have these things available. And then you just kind of gently leave it on their doorstep or on their voicemail or in their email or whatever.

Um, so that they can take. What they need, um, and move on without the rest.

So, I know we need to wrap up soon. Um, what are, do you have any last words of encouragement that you’d like to pass on or words of advice or wisdom that you want to pass on to our parents who are listening?

I guess, um, you know, though I’m a specialist in parenting, I’m still on my own parenting journey as well, and I’m still learning new things all the time, um, having a teenager and a preteen. Um, and I guess, you know, my, my invitation rather than advice, but my invitation is to really embrace the journey of parenthood.

No matter who your child is or who your children are, um, it’s such a incredible, um, way to learn about yourself and to. Embrace these little beings coming into the world, however they come in and however they show up and whoever they are, they’re all bringing these amazing gifts into the world. And I think as parents, um, I see my job as helping to support them to be their best selves, even if it’s, um, very different than who I might’ve anticipated them to be.

Like, oh, I didn’t think that we were going to go that route, but okay, I want to support you and, um, whoever you are. And, uh, and also just letting it land in you. So being open to being changed by your Children, right? So, like, and changed by your family, your whole family system, like taking it in, um, understanding, you know, learning from what’s happening, understanding people on a different level and.

Um, allowing yourself to be really present and touched by our, our little beings and um, who they are in the world and who we are in the world.

Excellent. Excellent. So, those who have been listening, if they want to get in touch with you, what’s the best way for them to contact you?

So, if you would like to get in touch with me, the easiest way is through email and that would be info[@]preparedforparenthood.com.

So my website is preparedforparenthood.com. Um, and you can either just go to the website and contact me there, or you can email me directly at info[@]preparedforparenthood.com. I’m also on Instagram under the same name. Um, I just set up a YouTube channel at Prepared for Parenthood.

Um, and I’m also on Facebook. Um, so any of those ways that you… I would like to reach out, I’d love to hear from you and connect with you.

And your podcast is Prepared for Parenthood, is that correct?

It is. It hasn’t, um, it hasn’t launched yet, so it will be Prepared for Parenthood, um, and so once I start recording and, um, setting that up, that will be, uh, how you can find me as well.

All right. So tell me, uh, tell me about the podcast. What is it going to be about? Tell me about your business and your projects that you have going on.

Uh, so again, most of my work right now is working with expectant and new parents, um, doing psychotherapy and parent coaching. Um, and also I have a couple of courses that are up and running around, um, you know, going, becoming a parent, um, what it’s like in new parenthood. rites and rituals around that. Um, and so really just inviting people in to check out and look around the website and see what’s happening.

Um, and then the podcast, the idea around it is, um, prepared for parenthood, helping people kind of get a broad view of, um, Anywhere from preconception through about the first five years, which again is my sweet spot that I work in. And so, um, working in the field of pre and perinatal psychology and health, I get to meet a lot of really interesting people who are doing work all over the world in those areas.

Um, and so doing some interviews with them, offering some sort of like an educational, um, Bent to it of, uh, learning about the unborn, the born, the development, um, in early childhood, um, and ways that we can best support that and support the parents going through that process as well.

That sounds very interesting. I think that, that, that will, will have a good audience out there too. So, Stephanie, thank you for taking the time today to answer my questions and to help share some of your expertise here. Um, and I do want to remind those, um, that this is an educational podcast. We’re releasing this information for information purposes only.

And, um, and we want you to make sure that you’re checking with your doctors and your counselors for anything specific to your situation. Um, Stephanie, thank you for taking the time here and for sharing your, your advice with us and your information with us.

My pleasure, Tonya. Thanks for having me.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Strategies and Insights for Parenting Emotionally Intense KidsShow Notes:In this interview, Tonya speaks with Anouk Brière-Godbout about parenting emotionally intense children, especially those with special needs. They discuss various challenges faced by parents of such children and common misconceptions. Anouk emphasizes that these children often experience intense emotions that may not be understood by others. They also discuss strategies for dealing with meltdowns and finding solutions that work for each child.

Anouk provides valuable insights into the world of parenting emotionally intense kids, including the importance of self-care for parents. She mentions her website and podcast, “Parenting the Intensity,” as resources for parents looking for support and strategies. Overall, this interview sheds light on the challenges and needs of parents in this unique situation and offers a resource for support and understanding.

Connect with Anouk:

WEBSITE: https://familymoments.ca/
PODCAST: https://www.justcast.com/shows/parenting-the-intensity/audioposts

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Meet Today’s Guest:

Anouk Brière-Godbout is a mom of 3 emotionally intense kids, who has a master’s in social work and has been supporting parents for 15 years (and that’s how long she’s been a mom!).

She now supports parents of emotionally intense kids for whom nothing in the “general parenting advice” seems to work so they feel confident in trying different things that fit their kids’ needs better.

You can find Anouk on her website at https://familymoments.ca/ or follow her on her podcast at Parenting the Intensity.

Episode #80: Parenting Emotionally Intense Kids###### (Recorded August 5, 2023)

Full Transcript of Interview:

Tonya: Anouk welcome to Water Prairie.

Anouk: Thank you for having me, Tonya.

This season we’ve been playing a game called Two Truths and a Lie, and each of my guests, I’ve been asking them to bring in three facts, and Anouk has agreed to play the game with us today.

So, um, so listeners, you’re going to listen to her three facts and try to decide which one is not true. And in the, if you’re watching on YouTube, you can write in the comments, or if you’re listening to the podcast, you can go to our Twitter feed or our Instagram feed and answer on the picture that you find there.

And a week after we release this, we’ll come back and give you the right answer. But um, but Anouk, what are your three facts that you, that you brought to share with us?

Yes. So, the first one is that I started my first business at 15 years old. The second one is that I worked nonstop for 20 hours. No bathroom break. Not anything. Not even a glass of water. And the third one is that I drove for five hours with a sprained ankle before, um, cruise control was a thing.

Wow! All right. So, listeners, you know what to do. Listen to the podcast first and then go in and leave your answer. You might get a little tip in here. You never know. Sometimes my guests give some clues as they’re answering our other questions.

Today we’re going to be talking about a topic we haven’t talked about before and it is parenting emotionally intense kids. And um, and so a lot of our listeners may have a child that has a diagnosis that this kind of makes sense why they seem to be a little bit tightly wound, and then others may just have a child that just is, um, pretty intense in their personality. So, um, so listeners, whether you are a parent of a child with a disability, you may relate to what we’re talking about today. Um, or know someone who, who would benefit from this. So, um, so if you’re listening to it and you know, someone else, please, please share this with them.

But, um, but to kind of get us connected and to know what we’re really talking about, Anouk, can you. Describe what an emotionally intense child might look like.

Um, I would say there’s many profiles that they can have. In general, they will react more intensely than the normal kid will be. And I’m using air quotes for your listeners.

Um, because normal is not a word that I really… Thinking exists, but, um, I would say like, yeah, it’s kids that will be more reactive in some ways. Um, I think we see mainly two profiles. One that is probably the child that you’re going to get phone call from daycare or school like every day because something went on at school.

And it’s a child that is like that everywhere. And the other profile that is less, um, obvious, maybe sometimes the one that is going to. Never. You’re never going to get a call from school. You might not even they might not even know who your kid is in some settings. Um, but at home, you’re getting that intensity much more.

Um, so it looks sometimes like crying. It can look like just a meltdown. It can look like reacting very intensely to things that look like nothing to us as parents. Um, and if you have the profile that is like, nobody else outside of your house sees. It’s hard because nobody understands. They think you have the perfect child, but at home, it’s another child, and it can be very challenging because you feel it’s your fault.

Um, and the child that is at home, at school, very challenging, then you’re often blamed by school or daycare or people outside because you’re not doing your job as parents. Um, like that’s how people make you feel, and that’s how we might feel to us parents of emotionally intense kids. Like, everything is just more, you know.

So I, I know, so you’ve, you’ve described, um, At least one of my children, even though my kids are older, but like I can’t remember having, um, at home with my son when he was young, especially feeling like we were always just going, going, going with, you know, just strong reactions to everything.

And it wasn’t always bad. It was just strong. We used to say that he, that he wore his emotions on his sleeve because you, you knew. No one doubted how he felt at the time, but then the teachers would tell me that, you know, no, he’s always said such a gentleman. He’s always respectful. And it’s, um, and so I had a counselor at the school once tell me that it actually was a good sign that he showed those emotions to us, but could control them outside the home because it meant that he felt safe, that he felt That, that was a safe place for him so that he could, and there were times that I wondered, do I really want to make it that safe anymore because, because parents, it gets hard whenever you ever happen to battle with that.

Definitely. And that’s, that’s very true. I think it’s something that’s very important to address is that sometimes the school can say that we don’t have that problem. So, it’s your problem. And right. Yeah, maybe, maybe. But the fact is that if kids explode at home, it’s because something is not going well, most probably at school or daycare.

So it’s not your, just your problem at home. But most of the time, since they don’t have to deal with it, they won’t help. Um, which is challenging when, when you, they have to deal with it, they want to collaborate with you more. Uh, so yeah, I, I’ve had. I have like three kids and I have two that fit one category and one that fits the other category. So I’ve experienced it all.

Well, you know, and I know before I had kids, and this is confession time here, I would judge other parents, you know, because you know, you’d be, I always think more like at, at, at the grocery store at. the out shopping at the checkout, because it seems like that’s always when, you know, they’ve been entertained when they were in the store and then they have to wait for mom to check out now.

And you’d have all the candies and everything, toys, everything, but they would, you know, then you’d see the child that’s like laying on the floor and they’re screaming. And of course, you know, my uneducated mind was, you know, we’ll. It’s that the parent must be doing something wrong. And so you’re right. I mean, I, I fully admit that I used to do that. And it’s, um, so now whenever I see the same situation, it’s like, you know, mom, can, can I do anything to help you because I’m on the other side of it. So I understand.

And sometimes just like a look of, I get what you’re going through. Yeah, exactly. A look of blame makes a huge difference.

You aren’t alone.

Yes. I get you, like, it’s okay.

So one of the things you, you mentioned, um, the candy and all that. So one of the things that we did with our kids that seemed to work with both of them, especially when they were little, when they were older, they’re easier to understand. Like logic. So you can kind of help them talk through some of those feelings.

But, um, but when they were little and they just didn’t understand anything, we would go, whatever story we went into, we would go and we would find a friend at the store. And the friend might be a book. It might be a stuffed animal. It might be a ball. It’d be something that they could hold on to that lived at the store.

And they got to spend their shopping time with that thing that they had to say goodbye because, because it lived at the store. And for some reason with the, both the kids, it actually worked and they would, they would go back and look for that stuff now, whatever it was. And um, and thankfully it was always there. It wasn’t something that was ever sold.

So that might have created another problem. I also love like I used, now I use my phone, but when my older ones were little, it, I didn’t add a phone that took pictures. Um, but I would always say, we’re going to put that on your Christmas list or on your birthday present list.

So, we are not like, we’re not ever going to get it. We will get it. Of course, we’re never going to get everything you ask for, because on one trip you might ask for like 15 things.

And you’re not going to remember what they were anyway.

My phone now is full of those photos though. She could remember because of that. I should delete them. But that’s another trick that sometimes happens to us, but it, happens like everywhere and it will happen at home. And to the point you were saying, like, kids will do it more to us. Um, I have one of my kid who, um, was doing it on purpose. Like she needed to cry. to let their emotions out at the end of the day when she started school and she, she needed to cry, but she was not able to, like, she was not able to let it go.

And so she would do things on purpose, knowing that I wouldn’t be mad. So when I would get mad, she would be able to cry, you know, and that was like, it was so obvious because she was doing things that she would never do otherwise. Like it was really that the point was that she would cry. I would make her cry.

That was, I was like. I’m not gonna. But you need to. How can we do that? So it can be very interesting to see that they, they need that release. It’s a release of something or it’s an overwhelm. It’s not like it. And I would say that’s the particularity of emotionally intense kids is that They don’t do it on purpose, and that’s the thing that we need to remember as parents.

They don’t do that because they’re bad kids. They do that because they cannot control it. And, and like giving consequences is just going to increase the reaction because they don’t control what’s going on. And so it, it’s often an overload of emotion, an overload of stimuli. Um, like lots of those kids.

Might get at some point a diagnosis of neurodivergence being neurodivergent. It can be kids with anxiety, with different mental health issues. Um, trauma, like it, it can be a lot of things. Right. Um, I, of course, hypersensitive kids will be like that. Um, kids who have, um, Um, speech delay because they cannot express themselves at the level of their cognitive functions, so it’s very frustrating.

So there’s lots of reasons why a child might have emotional, uh, intensity in their life. Um, and, and sometimes we just don’t know. And sometimes there’s many reasons, like it’s not one reason. There can be many things, which is, makes it very hard for the parent to, to find what’s the cause.

Right. Well, I’m thinking through, you know, when, you know, we, we always talk, talk, talk about kids going through their terrible twos, you know, and, and a lot of that’s happening with, as you said, with the language.

They mentally, they know what they want now, but they don’t have the tools yet to communicate. And so, so they get frustrated. Um, but then, so now you have a five-year-old who may be facing a similar challenge with, they may have the words, but they may not understand how to communicate that feeling yet of what they have.

And now they’re tired. They’ve been overstimulated that, you know, so you’re right. There’s so many different things that, that could be there that, you know, just thinking through. where the triggers are. And I want to clarify too that, um, when we’re talking about emotionally intense kids, we’re not talking about one child having a tantrum one day and then the rest of the time they’re just kind of relaxed and all.

But I think some of what we’re going to talk about here might could be applied in that situation. For the parent to be able to, to, to, to learn from it. But, um, but have empathy for everyone else whenever that happens to you. So, so, you know, this is one day and not day after day after day. But, um, but yeah, but it’s.

In general, it’s every day, many times a day. It’s kind of like skip some days. Um, but most of the time there will be some of it every day, probably more than once a day. Every kids will have a tantrum once in a while. That’s just.

Being kids and even like adults, adults, adults have a right, right. That’s, we just do them different ways, but .

Exactly. But sometimes it kind of looks the same. So, yeah.

So we, so we have these kids and you know, we have the feelings of people maybe passing judgment on us or you know, not understanding. So we may not always have that support that’s out there. What strategies can we use to help them as they’re trying to figure out what their feelings are? So that they can be healthy.

Um, I would say there’s two things and we might address one after the other but, um, In general, it’s regulation. So it’s really is emotional regulation. As I was saying, it’s not kids that do anything on purpose. They are losing it. Like, they don’t control what’s happening for whatever reason. And so it’s helping find, and I really call that detective work because it can be very hard to find.

It’s finding the triggers, the situation when it happens. And sometimes, like, Often there’s one, more than one thing, so it looks completely random. Like parents will say, I don’t know what it is because it’s all the time. When you really start to look closely, it’s not all the time, it’s not all the situation.

It’s specific moments, specific triggers, but it can appear like it’s all the time or that there’s randomness in it because sometimes often there’s more than one thing like a child might be hungry and there might be too much noise or they might have a like a fight with kid with a friend in school and you’re not even aware that there was a fight in school and then they will just it’s like, it’s like, Blow because you said no to a candy bar, but the cause is not the candy bar.

The cause is everything else going on and the candy bar is just like that little drop of oil on the fire, you know? So it just explode, but the candy bar is not even relevant. So trying to negotiate with the kids about the candy bar, it’s losing our time because the candy bar is not the real reason why the kid, like I was saying with my daughter, she was trying to make me mad so she would cry. I’m going to be like it’s not often.

It’s not that on purpose. It’s really, really the on purpose, but that’s what they’re doing. Like they’re just need the support and they’re explosive because they need the support. They need us to help them regulate. So it’s both detective work in. What’s triggering and what helps that kid calm down because not every child will be calm by the same things we were talking a bit before we went on like on the air about some kids need to be held and some needs to be left alone.

Um, sometime it can be a way to blanket and can be water. Uh, it can be like there’s so many can be music and phones. It can be a calm, dark room or. Or, or, like, it, it, for different kids, it’s different, um, different things that will help them calm down. So it’s finding both the cause and triggers, not necessarily a real cause, because, yes, the cause might help if you know, for example, that you have a kid with autism.

Like kids, neurodivergent kids are classic, uh, really emotional kids. If you know that, it might help you in your detective work to find the triggers, but you don’t need the diagnosis to find the triggers. You just need to, like, look at your kids and be very mindful and observant of that kid and what’s happening in their life.

And yes, you might not find them all because some might happen with somebody else and you just don’t know. But the more you can find, the more you’re aware of them, the more you’ll, it will help. But in the moment, giving consequences will just make things worse. So just really helping them to calm down and finding ways to help them regulate and not argue with them.

Like it’s pointless. You’re going to lose your time. It’s just going to be like, it’s going to escalate. And that brings me to the other things that is very important is. Staying calm, which, like, is not, not that easy. Like, it’s, we, we hear that all the time. You don’t yell at your kids and you stay calm. And like, that’s just bad advice because it’s very hard to do.

Like, you cannot just say to someone, stay calm. No, no. Just no. But that’s the fact. We need to stay calm because when they are super intense like that, it’s triggering for us. It’s like we, it, it even often trigger our fight or flight instinct because the noise can be very loud because they can be somewhat aggressive, sometimes really aggressive.

And so it’s, it’s hard to deal with. So we need to be super, super in control ourselves. And that’s very hard, especially when we are tired or when we are hungry, when we are overwhelmed. So that’s the other part. We need to, and that’s like the more dull answer of all, do self care. But lots of self regulating self care to be able to stay calm in those moments.

They’re, um, so you’re talking about the self care, like, so, you know, I’m thinking some of our parents have more than one child. You have three children. So. You’re, you were right, because I’m picturing that fight or flight, you’re going to escalate to that right away because now you’re trying to protect another child who may be in the room or witnessing that.

Um, so how can parents. Like, care for themselves, like how, how can they make sure that their own emotional well being is strong so that they’re not adding to the, the storm that’s happening there?

Yeah. And like, yeah, that’s totally like having even one kid is hard to do self care when you have a kid with special needs.

It’s extra hard to do self care when we have more than one kid with special needs. I’m not even going to say like, it’s almost impossible, but it’s still essential. And so I think that what I like to say is that we need to reframe what self care means. Self care is not, um, a weekend at the spa, like

I don’t even know what that is.

I have one plan with a friend at the end of the month is the first time in 15 years of motherhood. Wow. We’ll see if it really happens. I don’t know what it is either. I never went. So, so yeah, I mean, that’s not self care when you have kids, when you have multiple kids and when you have kids with special needs, it’s just not going to happen.

And so, and even seriously, like, even if you went once a month, it’s not going to be enough. Like, it’s not going to, like, it needs to be a constant thing. And that’s like self care that is self regulating is probably the thing I would go first. So like, yeah. Yoga, meditation, breath work. And even if breath work for you means taking one deep breath once an hour, like that’s better than nothing.

Yeah. Yeah. When, when your hour put, put an alarm clock on your, your phone and every hour it’s going to ring and you take a deep breath. Like even just that it’s self care. Okay.

Okay. Okay. So, so it doesn’t have to be complicated. It could be, it could be simple.

Yeah. And it’s just like, maybe you can drink like one warm sip of coffee.

And enjoying it. Like, this is self care. When you have kids, how many, I don’t know how many, like, it’s, it’s a joke in my house that if I’m looking for my tea, it’s probably in the, uh, the, uh, the microwave. Because I’m re eating my tea so many times. My kids, like, when I’m looking for my tea, my kids are like, uh, you look in the microwave.

Like, it’s, it’s, yeah. So, it, it can be just that. Just, like, one sip. Even if you can take your entire cup. What? Without creating it, like that’s the summum of self care.

I don’t think that’s possible. I mean, even, even at my level right now, I’ve never done that.

I don’t think I do, but unless I’m working, but I mean, those things, like just, it’s like appreciating what we are already doing just a tiny bit more.

And it’s a practice, but just a tiny bit, like just the deep breath. It just, okay, I’m here now in that moment. doing what I’m doing. This is self care, even if it’s just for one second or three seconds. And you, you, you practice it and it gets like it, you can get up to 10 seconds at some point. And if you do that, I don’t know how many hours you’re up during 24, 18.

Um, if you do that, like 18 times during your day, it’s 18 times, five seconds of self care you’ve done in your day. It’s better than none. You know? Right, right.

Well, I like that because a lot of times whenever I ask that question of people, I’m given like a, a more difficult process to follow. This is a start. And then maybe that, that one breath can become two as you’re going.

Maybe you can like do, you can start yoga by doing one sun salutation that takes about 15 seconds and could build up to three minutes or five minutes, and it’s better than none, you know, so it’s just like just a little bit. Just doing that is better than nothing, and it builds up on itself. At some point, it gets easier. And the other part is doing it with our kids. Like, I love.

I was going to ask about that.

Yeah, dance kitchen party. Like, that’s my favorite go to for healthcare with kids. Like, I, if I need an outfit and I need to, like, switch the energy, I’m going to put music and do a dance kitchen party.

Like, nobody’s watching because nobody’s watching and it’s my kids. Even my teens, they’re used to me dancing. Dancing and eat like right. Um, and so yeah, like that can be. And for me, uh, photography was one, like I do photography, but documentary style. So I will follow my kids and take pictures and be interested in what they’re doing while I take pictures.

The pictures are my hobby, but I take care of them at the same time. And I’m interested in what they’re doing. So, like, it’s finding things that we can do with them that doesn’t take us away from. Yes, but, for example, photography. Sometimes I’m going to do the dishes, they’re going to do something fun. I’m going to grab my camera, take two pictures.

It took me away from dishes for, like, a minute, and I’m going to go back. But also, they got one more minute of attention. I would not have gotten that, you know? So, it’s a win win.

Yeah, yeah, yeah. I like, I like that. So, are there, um, Like as we’re, as we’re trying to connect emotionally with our kids, because I think that’s, that’s a big piece of it as far as understanding what their emotion is or being able to, um, convey what our emotions are without yelling at them. How can parents strike a balance between providing structure and routine, but also allow room for their child’s expression emotionally?

Absolutely. That’s a hard one. Um, I would say really depends. Some kids really need routine so that it will be part of their triggers if there’s not enough routine. So if that’s what you’re unveiling when you look at your, your, your kids and observing your kids, I would say that it’s very important to try and put routines in place.

And if you as a parent yourself is not a routine person, like lots of ADHD or for example, um, it might be a struggle and that might be difficult for some parents to put routine in place. Um, and then at that, at those point, I would say there’s like You can have basic routines. You don’t have to go like sometimes we like routines need to be this, this, this and this at specific hours.

And some kids really need that, like really need that and crave that. And the more unstructured and disorganized they are, the more routine they would need. Um, other kids, it’s the opposite. Like, again, if you have an ADHD or as a kid, they might not need a routine. They might get bored very fast with a routine, and then it’s the opposite.

They, they need things to change up. And in the parenting world, routine is like that, that big thing that we absolutely need to put in place and that it’s good for everyone. And honestly, like, I don’t think any advice is good for everyone. Not every parent’s, not every kid, like, it’s just not a thing.

There’s no. Um, there’s no parenting advice that is good for every kind of family, and I really think it’s just tailoring those routine to the need of your family and the reality of your family. Like for example, I’m a family who like my husband’s always worked changing schedule. So some days is there for the dinnertime, some days he’s not, and we only know that a few days ahead.

So we need to change our routine every single day. And sometimes I’m busy and sometimes he’s busy. Like we don’t have parents that work nine to five and are always there at the same times. And quite frankly, that’s not the reality of lots of families. Like think about all the nurses, doctors, everybody who works in the, in the like military and health care system and lots of like a grocery store.

And like, there’s lots of people who don’t have that nine to five classical schedule and give, keeping a consistent schedule might not be realistic for lots of families, much more than we. are advertised, like the typical family for me doesn’t exist either and the typical schedule. So it’s finding a way to keep a routine somewhat in your life to the extent that your kids needs it.

Because yes, some kids really crave the routine. And then you’ll have as a parent to do the extra effort if it’s not natural. So that the kids can be regulated because it might be dysregulating for them. But if your kids don’t want a routine, then it can just be Before going to bed, we need to brush teeth, take a bath, and go to bed, actually, or read a book.

But the kid can choose what order they want it in, because they need variety to keep things interesting. And so their routine is just, we do those things, but not necessarily in the same order. As another kid, they would need to have bath time at… 730 and book 745 because they need that. So it all depends on the kids.

So the balance, I would say. It depends on each family. There’s no one right balance. I don’t know if that answers your question.

It does. It’s, you know, it’s something that as a family, we’ve always struggled with because I’m not a routine person. It’s um, I have 20 projects going on at any given time. I’m, you know, and there’s, it’s, it’s why I love podcasting because there’s enough projects just within this one that I can bounce from one to the other, but so, so it kind of, so that’s kind of how I was.

And, um, raising my kids, you know, we didn’t have dinner at the same time every night. We, but, but I, I, I like how you said that, you know, even just having the structure of knowing that they’re going to have a bath, they’re going to have their teeth brushed. They did have dinner at some point. See, I always, I’ve always felt guilty that I didn’t have any type of structure and I think both of them needed more structure than I could give them.

But that, that’s very freeing just to hear that. to know that there was some type of structure because there was expectation that all these things would be done. And they, and then they were done, um, pretty much every night.

Yeah. And sometimes we skip the bath and sometimes we skip brushing. The teeth are not going to fall because you skip a night. Right. Right. They just want you to try that. Do you think that? But it’s not true.

When, when they were little, we did have, they would always climb, climb into our bed and we would read together and we would do devotions together. So that, that was always the last thing before they went to bed. So, so there was some type of routine. It just wasn’t like every day at six o’clock, this is what we’re doing. So, and I was doing it wrong. Yeah.

And for your family, like just the, that can be the routine. There’s something before bed that is predictable. That’s a routine. Yeah. Like, we’re told it should be all those, like, 15 steps, but not necessarily. That’s the routine. It, but some, sometimes the routine makes just the fighting less. Some kids need more expectation, more clear, so they fight less.

The other thing that I was thinking of when you were answering that one was, um, We’re talking about watching your child, knowing your child, would you recommend that a parent keep some, keep like a journal of what they’re starting to see and to look for those patterns that way?

Yeah, I would say this. I did it mostly with photos. So I, I’m guessing, I would say it depends on everyone, like what you prefer. Um, I was not a big journaler. I am now. I do journal much more, but I was not that much. I started really I started noting things down a little bit, but it became easier for me when I started make like doing photography.

I was always taking pictures, but when I started doing it like every day, it became much easier for me to, um, document those things and observe new things. But I would say it depends on every parent. That is really a parent thing. Like if you prefer pictures, go with pictures. If you prefer videos, go with video videos.

If you prefer noting things down, go on. But I would definitely recommend capturing it in some ways because our brains forget, like, so easily.

Well, because, because we end up having two or three days of peace and no, no outburst. And then we think, you know, well, you know, this, this, this is fine. And then it shows up again because it’s probably going to, but then we forget what the pattern was before. And, um, because the other thing I was thinking,

If you don’t note things down.

And I was thinking too that even if your child isn’t diagnosed with a reason for being on an IEP at school, um, I don’t know, is, is it the same in Canada as in the U. S.? We have the, the Individualized Education Plan. What, what would you have in Canada?

No, we don’t. It’s not that clear. Um, some kids will have like a quotation, like a number associated with them if they have special needs and then that will come with some type of support.

Um, but it’s not all kids that has special needs with that would be like for to have those. Like quotes, like those number associated, it needs to be, um, very specific criteria. So some kids will need, need some support, but they don’t like get that. Um, it’s not as clear, I would say. I’m not super familiar with the IEP.

I keep hearing about it, but I’m not really sure what it is. Okay. Um, but yeah, I would say it’s kind of difficult to like compare because it really. Like different and here we have like special education class that are like kids will be regrouped based on their needs But that would be for really I needs Right, like I we will never see for example an ADHD kid with that.

We will see autistic kids, but only if they have Like, uh, developmental delays in general, like so level two, three autism, maybe never level one. Some schools are starting to have some classroom for level one autism, but it’s really rare. Um, and so in general, those kids should receive services in their classrooms, but it will be, um, very I, I worked a lot with kids, with parents of kids with special needs, like different special needs, and when they were hesitant between like regular…

Regular classroom and specialized classroom because their kids would, um, qualify for specialized classroom, but the parents still ask their, like, it’s the parents ultimately that would decide. I would always recommend that they go to the specialized one just before, because there’s not enough service.

And so the, the ones that go in regular classroom that should get the service, they don’t in general. I would also say this is specific to my province. It’s really different. Like the school system is not the same here than it is in different province in Canada. So it really is. Yeah. And I’m not, like Quebec is very specific in their school system compared to the rest of Canada. And I’m not familiar with the rest of Canada’s school system that much.

Yeah. Because I’ve never asked that question to, to know, and I’ve, I’ve had several guests on who, who live in Canada. We just haven’t addressed that yet. Well, so, so what I was getting at is even if your child isn’t on an education plan, um, you still, you know, your child.

And so if they’re in public school by keeping this journal or some type of documentation to figure out what that is, I would, I would suggest having a conversation with your child’s teacher to help them understand maybe what some of the triggers are because then they could maybe help them. You know Recognize before, like if they know something’s going to happen in the way that class is transitioning and that it’s going to be more difficult for your child, then they would be more likely to maybe go over and, and, and stand near them during that time or, or have a buddy assigned to them so that they, or maybe have them go in earlier, come in late, if that, if that would make it easier for them.

Um, and so if you know what those things are, I mean, I, I don’t know many teachers who wouldn’t work with you if you’re trying to help make it a more peaceful situation for the teacher as well as for your child.

Yeah, for sure. And, but the thing is that sometimes the triggers are different in school and at home, um, so might help, might not.

And often the trick that works at home to help the kid, kids go down, don’t work at school because. It’s not one on one, like the possibility to be one on one is not the same, but it can still help to, to share if the teacher’s open. I sadly had experiences where the teacher’s not that open to the parents feedback.

And in high school, like I receive, because we have like an intervention plan that we, we call them, the kids can have that. Um, and I received one this year for my, one of my child and I was not consulted at all. Like, nobody talked to me before they did that, they just talked to my daughter. So I was like, okay, it might have been useful if I could have said something.

But that’s high school, it’s different than elementary school. I would have been, I would have talked to the teacher at least, um, not necessarily, normally the parents are supposed to be there when they do those plans, it doesn’t always happen. Okay.

Okay. Yeah, so there, there are some differences between, between the school systems in our countries too, which is part of this too, because the, um, because we do, because in the U.S. we have the, the, the IDEA policy and we also have the Americans with Disabilities Act, um, that, that protects some. And so, and those were huge changes that, that happened. But there’s still, I mean, even after 30 some years, it still needs to be improved. It’s just. It’s just. Yeah. Yeah. Yeah. Which is why we have these conversations and why, why we’re trying to, to help give our parents as many tools as we can.

Yeah. And, and let’s be honest, like school teachers are not trained to support, like, it. kids that have special needs. It’s not their fault. They’re just don’t have the training. They don’t have many kids with different needs in their class, and they don’t even necessarily have diagnosis. They don’t really know what’s going on, and they don’t have enough support from specialists to help them.

So it’s really not. I always like running like most of the time. It’s not on the teacher. It’s on the system. Yeah. Like, it really is. Like, even the teachers who don’t want to cooperate in general, it’s because they’re overwhelmed themselves. It’s not because they’re bad people. Yeah.

Yeah. No, I agree. Yeah.

They just add enough.

It’s, and unfortunately a lot of our parents that are listening have had, you know, the negative interactions with teachers and it’s good to remind them that it’s not, it’s nothing personal on them, but there is a lot, there’s a lot more in the picture than what we can see. And I, and I’ve, I’ve passed blame before, um, as well.

Um, sometimes it was warranted, sometimes it wasn’t. Yeah. I mean, there’s good human, but that’s for another conversation.

So, so talking about, um, about misunderstandings and all. With, we’ve talked about with our ADHD kids, with our kids with that are lacking, um, executive functioning with down syndrome. I’ve asked this question of a lot of difference that I wanted to ask you too. Are there any common misconceptions about emotionally intense kids and, um, and thinking to not just.

You know, Joey, who has no disabilities and no, no learning disabilities or anything, who also is emotionally intense, but for our kids who have special needs as well, with that, are there any misconceptions that, that you’ve come across that you’d like to, to talk about?

I would say in general, it’s that the kid is misbehaving. It’s a kid that is not, and the parents is not doing their job correctly. It’s the thing that we see the most. And that’s the parent. Look at themselves that way often and they might look at their kids that way often that the kids is it’s a misbehaving It’s not like I would say that’s the most common thing.

We expect that kid and often it’s intelligent kids So we expect those kids to be able to collaborate and they don’t and then like we were saying about the grocery store Example like people would judge a parent they will judge a kid for not being Well raised basically, um, and parents will just be overwhelmed and think that they are doing a bad job and they’re failing in their parenting.

And for that reason, it’s, um, it’s not taught about a lot. Like parents won’t share that with other parents because the, it’s kind of shameful because it looks like you’re not able to raise your kids basically. And if the kid has a diagnosis, it makes it a little bit more easy because you can explain that if the kids doesn’t have, might never, or just don’t have it yet, it really is kind of shameful because you feel it’s your fault and people makes you feel like it’s your fault. So, I would say that’s the misconception that we see the most.

What I’m thinking too that, um, even, even with, um, Like our preteen and our teenage girls, I know I’ve heard like not in school, but in like outside groups like clubs and stuff, the adults working with it saying, you know, well, she’s, she’s just over overly dramatic.

She’s trying to get extra attention. And I think that can be a misunderstanding to that. You know, this is someone who’s, who’s either not able to regulate those emotions or like you’re saying with your daughter, she’s, She’s trying to figure out how to do it and she can’t do it herself. So she needs that, that extra.

Yeah, or the classic, like, uh, the whiny kids who always wants a band aid or things like that. Because they’re too, like, sensitive kids. This is a classic too, like, most often in girls, but it will be seen in any, any kids. Um, and if it’s a boy, it’s going to be even worse because it’s like that misconstrued that boys don’t cry, still is very hard in our society.

So kids that whine a lot and is like crying at every little bump. But. It’s hard for them like they’re really hurt physically or it might be scary. Like some kids are just scared. And we tend to say, Oh, you just like you, you were scared. That’s nothing, but it’s not nothing. Being scared is a real thing.

It’s much worse than the earth that you hurt your knee, but there’s nothing you were more scared than the actual thing happening to your knee. But the scare you add was real and it, when you’re extremely sensitive, that scare is worse than the physical pain. Yeah.

So I was one of those kids, excuse me, I was one of those kids that was very shy. That’s why I was quiet. I didn’t, I didn’t talk a lot, especially outside the house, um, but I would cry easily. And so I would aggravate a lot of people because, because that’s, but I was that emotional one. And so I learned that you waited until later to show your emotion when you’re away from everyone.

I was that kid too. Yeah.

So I think, I mean, I think a lot of our parents that are listening can think back. to their childhood. You know, emotions are strong. We remember those emotions from when we were young. And it’s part of growing up. And I say this at different times. I picture our children as being these little bodies that are holding adult emotions inside of them.

And so they’re tightly packaged in there. And whenever they have emotions, they just kind of explode because it’s too much for that little body to hold. Um, and so I, I never liked to belittle an emotion because they are. They’re very strong. We, we do feel them. And like I said, we, we remember them for years.

Yes. And it’s often like we, we, uh, we dismiss those emotions. We dismiss as not important or like too much. Because we see, like, a child that will do, like, an entire drama because the plate is not the right color. It looks completely silly as a parent, but it’s a real struggle inside that child. This child is really living it.

And I know, like, the struggle of getting out the door. Like we were, we were talking about routine sometimes, it’s like finding the balance between the shoes. Yeah. Where’s the shoes are. And like, I have like the, the, the, the socks that are not the wrong socks or like that little seam on the socks.

Those are the wrong socks is what I’m talking about.

Yes. And so sometimes it can be a struggle, but also like often it’s thinking outside the box. Like for example, one of my child was always late. Because getting dressed in the morning was a nightmare. Um, we started dressing in the evening so she would sleep dressed. We’d save 25 minutes every morning that way. And it sounds weird.

I mean, you say to people… That’s smart though. Lots of people were like, they were looking at me like I was crazy when I was saying that. Or they looked at me like I was a genius. It’s different. If they had the same struggle as I had, they were looking at me as a genius. Most parents were like, your kids sleep like dress. I’m like, you know what? Leggings and a t-shirt.

She was clean. The clothes were clean.

And leggings and a t shirt or a PJ. What’s the difference? Right. Like, like, yeah, it’s the same. So like finding those solutions also can be very helpful when you have. and dance kids that can like make you lose lots of time in moments that you don’t have the time.

Right, right. And, and knowing also like those, those two to four or five years old wants to do everything by themselves, but it takes forever. If you know your kids absolutely need to tie their own shoe, even if they cannot, and it will end up in a meltdown, then plan 25 minutes to put on shoes. Don’t expect it to take two minutes because it’s not gonna, you know, that’s how planning and knowing what are the triggers will help you.

Like right now my youngest is on her tying my own belt in the car seat that she’s not quite able to and she will get really frustrated and sometimes it’s like seven minutes to tie the belt in the car. Right. Right. Right. It can be very aggravating if you’re late somewhere. And just like explaining, like sometimes like, today we don’t have the time. We will have time later. Might work, might not, but it can be helpful.

You can do it twice whenever I pick you up.

For example, like if you do half, I do half. We can do, once we’re home tonight, you can do it 10 times if you want. You can even take the car seat out of the car and you can do it as many times as you want.

You can sit at the dinner table with your car seat. I don’t care.

It’s like thinking outside the box to find a solution that might help. It’s very helpful in those moments. Yeah.

Well, this is, this has been very interesting. If our parents want to get in touch with you, what’s the best way for them to contact you?

Um, I would say probably my website. It’s, uh, familymoments.ca because I’m in Canada. Um, or I also have a podcast, which is Parenting the Intensity. Um, so it’s probably the best way. I have an Instagram account for the podcast also. So, it’s probably the best way to find me. Um, I also have like free resources for self-care, um, ways to find them, like to help find ways to do self-care the way I was talking earlier and, uh, a course, a free course also for like starting to parent your emotionally intense kids more easily, like the first steps, um, a bit like I was talking, like finding those triggers and things like that.

So, if, uh, if your listeners want more information, they can. You can get that on my website, both the podcast and the main website. Excellent.

Yeah. We’ll, we’ll, we’ll put the links for all of that in the show notes too, so that they can find that. Um, what other, so, so tell me just a little bit about what you’re doing on the podcast and on the website too. And if there’s any special projects that you have going on right now,

Um, the podcast is a new podcast that started early January, not July, sorry. So, it’s just started. Um, right now I’m doing silhouette episode talking about. Lots of things that we touched on today and different things too. Um, I’m planning to get guests, um, in the fall, um, probably, and hopefully I’m going to have you on.

I’d love to come.

Um, I will also, uh, like right now I’ll do mostly one on one support. Um, but I’m going to launch a membership, um, probably November. Uh, to support people in the group setting because I really love, uh, supporting people in a group. And I think a big part because that is kind of a shame.

People don’t talk about and don’t have other parents to relate to, but there’s lots of other parents out there that live, are living through that. So, I think it’s very important that we. We realize we’re not alone, so I want to do that in a group setting, and I’m planning a summit in, um, but not really, that is, I’m not, not quite sure of the format yet, probably a retreat or something online for parents of emotionally intense kids to both do self-care because it’s really important and also find ways to like clues in detective works.

Nice. Nice. Well, that, that all sounds really exciting. So, we’ll, again, if you’re listening, check, check the show notes or the description in the video, um, for her links and check out what she’s doing. Um, she, she does some great posts on Instagram and on her website as well.

So, so you want to plug into all that and be sure to listen to her podcast too. So, Anouk, thank you for spending some time today talking about this. I think it’s a great topic for us to bring in and to bring to light because as you say, a lot of parents aren’t feeling like they have support out there, they’re by themselves and there’s a whole, there’s a whole world of people out there that understand exactly what they’re going through.

So, thank you for joining me and for sharing this with us.

Thank you for having me. It was a pleasure to talk to you and get to know you better.

LrP6LZHvIn2Xft83qyKc

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Show Notes:In this episode, Helen Panos, owner of Dynamis Learning in Atlanta, GA, and Heather Wright, a Master IEP Coach, share a wealth of knowledge and guidance on the important topics of Individualized Education Programs (IEPs) and 504 plans for students with disabilities. These passionate advocates offer a comprehensive overview of these plans, emphasizing the critical role that parents play in their children’s educational journey. After hearing their discussion, you’ll be a pro at understanding the difference between IEPs vs 504 Plans!

Throughout the discussion, the conversation underscores the need for a collaborative approach, emphasizing that the school system, educators, and parents should work as a team to ensure that each student’s unique strengths and weaknesses are recognized and addressed. Additionally, they highlight the importance of early intervention, early identification of potential issues, and ongoing communication to foster a supportive educational environment.

Overall, this podcast interview provides an essential resource for parents, teachers, and anyone interested in the world of special education. The conversation highlights the importance of advocating for every child’s unique needs and creating an inclusive educational environment through collaboration and communication.

Connect with Helen:

WEBSITE: https://www.dynamislearningacademy.com/
FREE Advocacy Brochure: https://bit.ly/40vheZg
PODCAST: https://podcasts.apple.com/us/podcast/smart-parents-successful-students/id1581128395
INSTAGRAM: https://www.instagram.com/dynamislearningacademy/
FACEBOOK: https://www.facebook.com/dynamislearningacademy
YOUTUBE: https://youtube.com/channel/UC-DBFY2KmyXii8Zp41R0RbQ

Connect with Heather:

WEBSITE: http://www.heatherwrightconsultant.com
INSTAGRAM: https://www.instagram.com/heatherwrightconsultant
FACEBOOK: https://www.facebook.com/heatherwrightconsultant

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Meet Today’s Guests:

Helen Panos is an accomplished educator with over 25 years experience in a public school system. Helen began Dynamis Learning 7 years ago. Its a K-12 nationwide tutoring/SAT/ACT Prep, advocacy & academic planning company. With Helen’s depth of expertise, she is able to provide personalized support and solutions for academic success. She has up to 20 tutors on staff, and these educators have various specialties. They can tutor at the child’s home or library in the metro Atlanta area OR virtually nationwide.You can follow Helen on her podcast, Smart Parents Successful Students, as she has a wealth of information to share with parents.

Episode #79: IEPs vs 504 Plans: Understanding the Differences###### (Recorded August 9, 2023)

Full Transcript of Interview:

Tonya: All right. Today I have the pleasure of hosting two important guests, Helen Panos and Heather Wright with me, and they are here to shed some light on an important topic, and that is understanding 504 plans and IEPs and the similarities and differences between them. So Helen and Heather, welcome to Water Prairie.

Heather: Thank you for having me. I’m so excited to be here today.

Helen: Yes, thank you for having me as well.

Tonya: So I’ve, I’ve been looking forward to this because this is a topic that I’ve been wanting to bring on since we started the podcast. So it’s been over a year and a half now. And we did have, um, the Nicole Schlechter came on and she’s the IEP Mom.

So we did talk a little bit, um, early on with that. So, and, and those that are listening, I will link this in the, in the show notes if you want to go back and hear what she had to share, but, um, but we didn’t get into really. a deep dive on comparing the two plans and I think a lot of parents are not sure exactly what it is.

Before we jump into the topic, this season we’re playing a game with all of our guests called Two Truths and a Lie and I’ve asked Helen and Heather if they would bring their facts or pseudo facts with them and they both have agreed to play with me. So, um, I’m going to start actually with Heather and ask her if she’ll share her facts with you first and as you’re listening I want to try to figure out which one is a lie of the three.

After you listen to the episode, go and look at Instagram or Twitter and leave your guess in the comments. Or if you’re watching on YouTube, you can leave it in the comments on the video. But listen to the whole episode first. So, Heather, what are your three facts that you have for us?

Heather: So, we’ll go with, um, my background was I was a middle school special education teacher, and mostly math, and I loved teaching middle school math because I actually loved being a middle school kid. Um, I also say special education chose me.

Tonya: So, Helen, can you top that one?

Helen: I’ll try. Um, let’s see. So, um, I was chosen to go to Plains, Georgia to work with 14 other, um, let’s see, Georgia educators. And I met, actually, while I was there I met, uh, President, uh, Jimmy Carter and his wife. And then, another is, I was in the opening ceremonies of the 1996 Olympics. I was actually on the field performing. And the last is that I am a triplet. So one of those is a lie.

Tonya: All right, so listeners, take your guests, see if you can figure them out. And then, um, and then leave your comment a week after we post this, we’ll come back and we’ll put the answer so you can check your, your work there.

I invited Helen and Heather because, um, Helen has an extensive background and experience as a 504 chair and Heather is a master IEP coach. So I thought this, this was the perfect pair to come in and to help us understand about what, what a 504 is, what an IEP is, what the differences and listeners, if you’re outside of the U.S., these plans won’t apply to you, but you may have something similar to that. So, um, so listen through. It may give you some ideas of things that you can ask your, your own school for your child or the authorities that, that you’re working with, but at least give you an idea of what some of the things that are happening in the U.S. are, but for those that are in the U. S. This is, this is specifically for you to understand more what’s happening. And I know I get a lot of questions trying to understand the differences, the laws around them and all. So I think this is a great topic for us to pull in. And my goal today is that our listeners can understand the differences between the two, the criteria, some of the protections, and even the administration of the plans.

So the questions I’m going to be asking will be kind of geared toward those things. And um, so with three of us, it’s a little bit different in this. So listeners, you’re just going to have to. to, to stick with us as, as we try to do like a ping pong here between, between everyone. So let’s start with, uh, just a baseline.

Could, could, could one or both of you jump in and explain just briefly what is a 504 plan and what is an IEP?

Helen: A 504 plan is out of the section 504 of the Rehabilitation Act of 19, I think it’s 73. Is that right? I think it’s 73. It’s way back in the day. And really this wasn’t even being used for a long time because I was an educator for 25 years and I’d say in the last 10 years you’re really Seeing a lot of 504 plans.

Um, Especially because of a diagnosis like ADHD that’s become very popular these days. So Um, the office of civil rights is the one that actually is the federal agency that kind of monitors a section 504 compliance And it’s also the responsibility of each district to ensure that the 504 is compliant and being monitored.

So the office of the OCR, the Office of Civil Rights monitors it. It comes down to there’s a 504 coordinator in the school system. They oversee it all. They have meetings because there’s usually I say usually because there’s been some changes since Covid. But usually there’s a 504 chair that oversees it in a school within the school systems.

It should be a 504 chair in the school. That oversees it, um, and basically it allows accommodations if you have a medical diagnosis or you know, anything, um, physical, ADHD, anxiety, those are the popular ones, uh, dyslexia, to allow your child to have accommodations if the need is shown, meaning it’s shown in the school.

Um, not just at home. Okay. So, um, because the teachers are having the meeting. They’re part of it. Parent comes in, teachers have the meeting with the 504 chair. And those are done annually. Okay. Now, you do have to get a re evaluation every three years as well. So, then you have to kind of go back to your pediatrician or your doctor to, to then do a re evaluation.

But you can always add in a diagnosis, you know, anytime, really. I’ve had multiple father of four meetings in a year sometimes for one child. So, that’s pretty much it.

Tonya: We’re going to talk a little deeper into it too, but that kind of, so, so parents listening, that’s, that’s the 504. Heather, can you fill in what an IEP is?

Heather: Yes, I’d love to. So an IEP, um, you’ll hear it as Individualized Education Plan or Program. Depending on where you’re at, the P kind of changes, but it’s all the same thing. Individualized Education Plan or Program. And what it is, is the document that outlines the specific supports. And methods in which a child that has an eligibility for special education under the 13 eligibility, one of the 13 eligibility criterias, um, that’s under IDEA law, um, you get determined that you’re eligible for special education and then a plan that IEP is developed.

Supports accommodations that supports individualized instruction or, um, differentiated instruction, and that’s really the biggest difference between the 504 plan and special education and IEP. So, with the 504 plan, you can get accommodations to support your learning, your social, behavioral, anything really.

With the accommodation side with an IEP you get the accommodations, but you also have specially designed instruction So it is provided by a special education teacher and they individualize your learning to meet your unique needs.

Tonya: Okay, so before we go any further Helen you had mentioned that dyslexia would come under 504 I’m assuming not for every child that has dyslexia though because some may require specialized.

Helen: Yeah, there’s a fine line and maybe Heather can say where that fine line is, but that’s correct. Uh, not every dyslexia is a 504, it could be an IEP, you know, because maybe a lot of times when you get a diagnosis, you usually have something else as well. They usually come in pairs. Um, so if you have ADHD, you might have executive functioning. If you have dyslexia, it might be something else as well. So you’re correct about that. Not all. 504s are IEP, or um, dyslexia is 504s.

Tonya: Okay. Okay. So, Helen, as a former 504 chair, could you tell us about the students that would typically benefit from a 504 plan? So we just talked about a couple of them there. Um, can you go, go a little, little deeper on that?

Helen: Sure. I’d say even, okay, so I think there’s a misconception out there that maybe gifted kids wouldn’t have a 504 plan, but actually to the contrary, you’ll see a dual classification is what we call it, where a kid could be I, uh, special ed classified and a gifted classified child.

And my guess is that’s where you’re going to see a 504. You could see an IEP instead, but if it’s not too severe and they can, it fits under a 504, you could get accommodations for the ADHD. Like extended time, small group testing. Um, sit, sit in the front of the room, you know, all these kind of things. Um, ADHD is still number one, even though anxiety is probably running right up there next to it now, I hate to say, then it may need to go to an IEP because they get more specialized attention and instruction.

They’re not going to do that with a 504 and a 504 plan. It’s just the teachers, the typical classroom teachers are going to get your 504 plan with accommodations and they have to follow them by law. There’s no special teacher coming in to assist, and Heather can talk more about that. Uh, like you see in an IEP.

Tonya: Would that also include a child who is, um, maybe diabetic that just needs medication during the day?

Helen: That would be a 504. That was the number one thing that came out. I think strongly with the 504 plans was Diabetics right and then it’s now You know molded over toward add in now ADHD and dyslexia and all these other things anxiety. I’ve seen oh, I’ve had to look up some things. I never even knew existed. A lot of things out there.

Tonya: Would it also include a student who has a temporary need such as a broken leg or something like that? Would that also be a 504?

Helen: Uh, you know, they try not to do it. And if we think the child is not going to be, and it’s up to the parent kind of there. If we don’t think the child’s going to be in a cast for very long, or now that they’re all going a lot more, uh, computerized, they don’t have to write as much, right?

If it’s a broken arm. They usually work it out with the nurse because the nurse will get a plan as well, a health plan, right? So usually they can work it out. Parents should stay on top of that because if they see it’s getting too difficult for the child Yes, I’d go with a 504 so you could be protected.

Heather: I also wanted to take you back on that too, is that even with a 504 plan you still can get have access to related services So That could be special education, and I say special ed transportation because that’s what it’s called, like, when we’re documenting it, but transportation, if you need it for a child with a 504, can still be included on a 504 plan.

You don’t have to have an IEP in order to get transportation, you know. I’m, again, I’m calling it special ed transportation, but transportation can be added as a related service into a 504.

Helen: And homebound, homebound services as well.

Heather: Also, a tutor coming out. It could also be the other related services could be OT like occupational therapy I have a client right now that has a 504 plan that has OT consult and written into their 504 plan with transportation as well So you can get some supports That maybe an IEP would provide through a 504 You just have to have the data to back that up and support why the kid requires that level of support So I just wanted to interject on that too because a lot of the times parents I think, well, I can just get accommodations, and I can’t get any other additional supports, but it could be related services on top of those accommodations as well.

Helen: Right. Okay. Good. I do want to add while I’m thinking about it, uh, Tonya, that if people, uh, if a child loses their accommodations over time, and that is the need is not being shown any anymore. I’ve heard people being told, oh, he’s not a D H D anymore and we don’t have a 5 0 4 anymore, and I’m going, well, how did he lose the A D H D?

Right diagnosis. You don’t just lose that. So I want to make that clear, because I’ve heard that recently with one of our kids that we’re tutoring. Um, and on top of that, you can leave a, I always say you should leave a 504 open whether it has accommodations or not. And I’ve seen 504 with no accommodations, and we still have to have an annual meeting to check in on that child.

If you close that 504, now you’ve got to start all over again.

Tonya: Right. Now, we had been told that, both my children were on IEPs, but we had been told that same advice, to make sure that we always kept it open, even if they, if they had a year where everything was going well, because it’s easier to keep it going than to start it all over again.

So that’s, that’s good, good advice there. So, um, so Heather, as an IEP specialist, could you describe the students that the IEP would typically be recommended for?

Heather: Sure. Um, really, it all comes down to educational impact. So a child that has ADHD, is medically diagnosed with anxiety, might not require specialized instruction with an IEP, right?

They might need accommodations. But where the fine line goes is where’s the educational impact. And I say that, I didn’t say academic impact. I said educational impact. Educational impact is not just. reading, math, A’s, B’s, C’s. It affects social emotional behavioral as well. So yes, it could be your grades.

And yes, it could be how bad you do on your SATs. But if you have a disability or a struggle that is academically, excuse me, educationally impacting you. So whether that is academic, social, emotional, behavioral. and it requires you to need specially designed instructions, then that is when you would look at an IEP.

So, for instance, if a kid has ADHD, and maybe they’re medicated or not medicated, and maybe they only need some accommodations, but then the workload gets harder, but they’re also struggling to make friends. Maybe it’s impacting them, and they’re behaviorally getting in trouble. Then it’s, hmm. Now their ADHD is getting in the way of them behaviorally, so we need to see is there instruction that needs to be taught to this child in order to move him forward or her forward, right?

Right. So, it could be that. It could be we’re seeing a lot of the anxiety and the invisible disabilities of anxiety, depression, and a lot of kids are masking. They don’t want to show. You know, I don’t want to show that I have this going on and I hear it all the time. Well, they have straight A’s That doesn’t mean that they’re not being impacted by their depression, their anxiety, their learning disability.

So, um, I did want to mention that there is a misconception in the community too that even though you might be medically diagnosed from a pediatrician, from a psychiatrist, with something Autism, ADHD, they cannot diagnose an IEP. So just because you have a medical diagnosis, doesn’t mean you’re just going to take it to the school and poof, here’s your IEP.

The IEP team, and I think we’re going to talk about that a little bit later, um, determines if they meet the criteria under one of the 13 criteria. So intellectual disability, learning disability, autism, traumatic brain injury, visual impairment, deaf and hard of hearing, there’s 13. So you have to look, do they meet those criteria, and is there educational impact, and is there a need for a specially designed instruction.

So that’s really what we look at when we’re looking at does a child need an IEP. Um, some of our kids come with a 504 first and they realize that the accommodations just aren’t enough. Just having small group testing or just having extended time isn’t enough. Just having those, you know, check ins with a teacher isn’t enough.

Their executive functioning skills are struggling that they don’t even know how to ask and how to advocate and how to use their time wisely and how to use the headphones and all the things so they have to be taught how to use those skills and that’s the instruction that um, an IEP would, would give you.

Tonya: So we, we’ve mentioned executive functioning skills a couple times now and back in episode 71, if you’re listening and you’re not familiar with what we’re talking about, we had an executive functioning coach on to talk specifically about that. So mark that to go back and listen to, to kind of fill in the blank there.

But I did have a question about that because having, having a child who, who struggled with executive functioning skills, that was always off the table. for us. And so it sounds like the way that both of you are talking that at least where you are in the country that that is being recognized a little bit more.

Can you, and, and we hadn’t talked about this ahead of time, but so many kids do, are, are affected by weak executive functioning skills, especially by the time they get to middle school. Um, so does that fall under 504, under IEP, or maybe a combination?

Heather: So in my terms of when I, executive functioning isn’t going to be an eligibility criteria for special education, but it comes into accommodations that can be given to a child to address those executive functioning deficits.

Or it could be goals and objectives that an IEP provides that are monitored on a consistent basis. You’re teaching the skills on how to. Right. Plan. How to organize. Organize. How to do all the things. Basically how to live your life every day. Because living your life every day is basically executive functioning.

Yes. It is. You make so many decisions in a day. All right.

Helen: Very important skills to have. Executive functioning.

Heather: If your child is diagnosed or, you know, found eligible and they do struggle with executive functioning skills, which most of our kids in special education, they do. They do. They struggle with organization.

Their backpacks look like the dumpster. You know, you can’t find anything. Their lockers, it’s just awful, right? They can’t remember the third thing you said on a list of, of two, you know? So like, they have to be taught how to do those skills. And that’s where, if your child does have an IEP, the special education teacher or the related services providers can support those deficits and teach the skills.

And scaffold it so that you can build on that, right? We’re not going to say, hey, you need to go into middle school and advocate for yourself when the kid’s like, I don’t even like to raise my hand and say the name, right? You have to teach them that it’s okay and create that environment. So it’s really building on the strengths of the child to work on those deficits through objectives and goals in the IEP.

Accommodations that can be provided in the IEP and the 504 has the accommodation side, but not the goals and objectives side, right?

Tonya: So, so if a child is starting to show that the, the weaker skills that they have are causing them not to be able to reach their academic goals that they have, then it might be that an IEP would come into play, not because of the executive functioning skills, but because of the, they’re, they’re dropping back.

They’re not reaching what they need. And then at that point, that’s when a goal could be written to help strengthen those skills. Is that what you’re saying?

Heather: We could be. And they based that on, you know, classroom observations. They look at data on just classroom assessments, anecdotal, observational, you know, kind of things.

Um, and if you do go with eligibility for special education, you’ll typically go with a comprehensive evaluation where a school psychologist is doing formalized testing and executive functioning is typically part of that. Especially if you are a parent that, you know, your child struggles with planning.

And I’m sure that the teachers know it, too. You address that with the team as a concern, and you say, I am concerned about their planning. They cannot plan to save their life. Like, they couldn’t open a box and get out, you know? You, as a parent, knows your child best. So, if you’re seeing things that are happening at home, it’s still important to bring up those concerns to the school and say, I’m concerned about…

The planning. I’m concerned about their attention. I’m concerned about how they’re processing information. I’m concerned about their reading and address that with the team so that when you’re meeting to potentially go for an IEP or they can do the evaluation process, they’re not leaving anything on the table.

They’re addressing your concerns and seeing if there’s any assessments or tools that can support your child that way.

Tonya: Alright, good. I appreciate you answering that, that, that question. It’s something that, that we don’t always talk about, so it, it helps to kind of clarify, and I’m just going to pick both your brains as, as we’re going through this.

The, um, so I want to talk, I want to switch a little bit now and talk about maybe the criteria for each of the plans. So what are some of the factors that are considered when determining eligibility for a 504 plan? So Helen, I’ll have you answer this one.

Helen: Um, so factors, number one, you always have to have a form from a medical professional or a psychologist.

I’ve seen a lot of psychologicals. People do go to psychologists. One thing I think parents need to be aware of, though, with a psychologist is they’re very lengthy, right? Oh, I’ve seen some really lengthy ones. Um, so psychologists will write down a lot of accommodations, okay? And what most school systems are going to say to that is, Again, it goes back to the need being shown in the classroom and if your child is not showing that need, they’re not going to give you that accommodation more than likely because the 504 chair, if they’re good, they’re listening for, okay, I’ll go around the room and say, okay, math is what’s happening in there.

What’s happening in language arts, what’s happening in, in, you know, social studies and all these. So it could be one class. That, that’s happening and, and maybe not the others. It just, sometimes it depends on how the teachers run in the class too. It, it may be a better fit for that child. And then the following year, you’re like, Hey, wait, he did fine in math and now he’s not doing fine in math.

Tonya: Right. Yeah, so, so it may not have had anything to do with math. It may have been the environment for them.

Helen: Yeah, it could be the environment helping the child. Um, but definitely, uh, psychologists tend to put a lot of things down. And it’s not, That’s typically not going to go on a 504 plan that many things. Okay, so the big Q is a need has to be shown.

Tonya: How how does that compare to the IEP between the two?

Heather: Yeah, there’s honestly, there’s a big difference between the two. Um, because when you’re looking at special education, you are probably already in a tiered process of interventions. So the school system, the teachers have identified that there is an area of concern.

Maybe it is in an academic area, but it could be social emotional. It doesn’t have to be that the school sees that it could be, you could do a direct parent request at that point as well. So there is. A few different options that parents have that if you’re seeing it, but you’re not the school isn’t saying it then you could do a request and we can talk about that a little bit later.

I don’t want to dive all into giving too much information or overwhelming our listeners. Um, but your child is probably already in a tiered process and receiving interventions. So, a math intervention, a reading intervention, a behavioral intervention, a speech intervention. There’s interventions that are being done.

And what that looks like is if the team is meeting and they’re not making progress with that intervention, then the school team is going to say then there might be something else going on here in terms of a disability that we need to explore. So then they’ll bring the parent in, um, and let me back this up to You’ll hear out there in the world, and if you hear as a parent that’s listening to this, that RTI data, that’s what they call it, RTI, Response to Intervention, that the data has to be done before the evaluation process is started.

If you hear, again I’ll repeat this, if you hear that RTI data has to be done before the process of evaluation is started, that’s inaccurate information. RTI intervention data and test at the same time. So, if one likes it, one doesn’t. Yeah. That’s a gold nugget. Um, but you do have to have intervention data to show that they’re, they’re not making progress.

So then, we’re looking at eligibility criteria for the 13 criteria, oh my. 13 eligibility criteria, um, and each one of those 13 has different criteria to be eligible. So for instance, if you are suspecting that a child has a learning disability, that’s going to be different criteria than a child that might have other health impairment that has a diagnosis of other health or, um, of ADHD.

So for instance, if we’re looking at a learning disability. They do have to have a classroom observation. They do have to have a processing disorder. They do have to have underachievement in an academic area. So there’s different criteria. And this is nationwide. So, federally guidelines tell us what the criteria is for each of those 13 criteria.

So, you can go to the, um, and I say Georgia because that’s where I’m sitting right now. That’s where I go. But if you go to the United States Department of Education IDEA. It’ll tell you those 13 categories and what you need in order to, you know, qualify under those. So, it does vary state to state, so please, if you’re listening in a different state, go to your state’s website and it’ll tell you what it looks like.

But, when push comes to shove, again, they’re coming back to, um, educational impact and is there a need for specially designed instruction. So they have to prove those two things in order. to be eligible for special education and then develop the IEP. Okay. You have to be found eligible, and just like, just like IEPs for special education, you have to be found eligible for a 504 plan too.

So you just don’t automatically get it, you have to be found eligible, and then they develop the plan. Just like for special ed, you have to be found eligible for special education, and then you can also, then you can proceed to an IEP.

Tonya: Before I move to the next question, um, just as you’re talking, I’m thinking through our kids that are twice exceptional.

So they’re, they’re in the high academic potential there, but they have a learning block. They may not be remedial students. They may still be scoring that average score. Is that child eligible for an IEP?

Heather: Absolutely. You can be twice exceptional and have an IEP and be gifted.

Helen: Okay. That’s what, yeah, I mentioned that earlier, definitely. I was seeing more of the dual classified when I left the school system three years ago.

Tonya: So that, so that student doesn’t have to have fallen behind their peers.

Heather: No, because remember, it’s not just about academics. It could be sexual emotional behavior. And also, and I don’t mean to interrupt you, but, um, there’s a misconception too in the community that Typically you don’t have a 504 and an IEP at the same time.

So if you have a 504 plan that addresses the medical accommodations, once you are found eligible for special education and develop an IEP, those, that 504 plan basically gets eaten up. into the, the IEP, you know, into those accommodations. Now, they might have a medical plan, but like you said, they have the broken leg or, you know, whatever it looks like.

They might have a medical plan that could be different, but you typically have either a 504, a 504, or an IEP. There’s really no need to have both because they, they mesh together.

Helen: And I will say this, Heather can back me up on this, but I’ve seen, it’s very rare, where if you have an IEP, and now all of a sudden, for some reason, the parent wants to come down to a father in law.

I was going to ask you about that. Um, how easy is it then to get an IEP, Heather? Because I’ve seen, very rarely, but I’ve seen that a couple times in the three years that I was doing the chair position.

Heather: Well, and it can be difficult, but my advice to anybody who’s listening that’s in that position, that if you’re, if you think that your child, Or the school is telling you they’ve mastered all of their goals and they don’t need special education anymore, which Ultimately is right what you want.

You want them to be successful. You don’t want them to have to have all of the supports Before you sign the paperwork to say that they no longer are eligible for special education Please request a comprehensive evaluation to make sure that they’re still not that impact because if you If you just say yes, they’re not eligible anymore And then two weeks down the road, they start to falter and there’s an impact again, then they have to go back through the entire process of, yes, collecting data, but signing consent, and then it’s 60 days for evaluation, and then you have 30 days after that to develop, like, it’s just, don’t, I don’t want to say don’t give it up without, don’t just be quick to give it up, per se.

Make sure that you have evidence and data to back up that that child no longer needs It’s specially designed instruction and there is not an educational impact before you say it.

Helen: It’s easier to close a 504 and then try to reopen one of those versus an IEP.

Tonya: Would you recommend, would you recommend that they, um, that they ask to maybe have the specialized services on consult for a while instead of Direct services, could they do that?

Heather: So that’s typically what I’ve seen when I was a classroom teacher. Um, so a lot of our kids maybe need small group. They need all the intensive instruction. And then we’re like, okay, well they’re making amazing progress. They are learning those advocacy skills. They’re learning those executive functioning skills.

Then we move more to the least restrictive environment or more of a consult model. Like, let me as a case manager special ed teacher just check in. But even still, at that point, I would still want to have the data to say that that child no longer requires it, because it, you, you could think all the amazing things and then things happen and then there’s like, he’s not, he or she might be masking, right?

And then you just don’t know. So prove to me that they don’t need it anymore. Well, I’m thinking too. Yeah.

Helen: Okay. By the fact that it gets harder as they,

Tonya: Well, that’s what I was going to say. You, and you have transition. Maybe they’re doing great in fourth grade, but they’re going to be going on to middle school in another year.

That, they may need that support when they get to the new environment. And as the academic rigor gets more intense with it later too. So, I, I, I was always cautioned to make sure that we kept the IEP going. And so, and I, I thought that was good advice. And there were times with more and less support through the years. with, with both of my kids, but they both graduated with an IEP in place. And, um. Right.

Heather: And it’s, it’s, it’s also yes, elementary IEPs might look different than middle school IEPs and they should look different than high school. So they’re at different levels, right? And it’s not necessarily that services or, or supports are taken away.

We want them to look different. Because a fourth grader is a different person than a sixth grader or a seventh grader. Right? And we want them to be. It’s more independent as possible. So, they might have a bigger safety net in fourth grade than they do going into middle school. It’s not that it’s less than, it’s just different.

Right? Right. We might have to change and have those conversations about how it’s different and not less than. But, excuse me, please, if you’re listening and your school team is saying they don’t need special education anymore, I would highly recommend, before you say yes, that they don’t need it anymore, Ask for the data to prove that they don’t require it anymore. You know, and ask, just ask.

Tonya: Now, when we first started, Helen, you talked about who oversees, um, or administers the, the 504. Did we talk about with the IEP who, who oversees that? We did not. Can you, can you fill that in for us?

Heather: Yes. So at your school level, you’ll have, um, and I’m going to start from kind of like a I don’t want to say bottom, that teachers are on the bottom, but like, just hierarchy of what we are. Yeah. I was a special ed teacher and I’m just like, I don’t want to say that I was on the bottom because I was on the top.

Tonya: The most directly involved to start with.

Heather: Yeah, I like that better. Um, so you have your, your special education teachers. that will have, will be the direct service provider. So that could be a math teacher, a language arts teacher.

You also could have your related services providers, which are your occupational therapy, your physical therapy, your speech and language. It could be your adaptive PE coach, um, lots of different related service providers. So they are responsible for implementing the IEP with the services that are in the IEP for their specific skillsets.

So math goals are for the math teacher. Speech and language might Combined with like a language or reading, you know, they have their own speech and language goals, but they might also be supporting in a classroom goal. Um, excuse me, occupational therapy, the same thing. They are probably supporting a writing goal or supporting sensory.

So they’re the people that are having the most direct support and are responsible for implementing the IEP, collecting data on the goals and objectives that are in that IEP, ensuring that the accommodations are being implemented with fidelity. Right above that, and I say, they have the same amount of support, but every special ed student will have a case manager that is assigned to them, so that is the person that is typically responsible for developing the IEP, making sure that the IEP meeting is scheduled, following up with the teachers, um, again, making sure that the accommodation plans are given to the teachers and the IEPs, and typically it is a teacher that the child has during the day.

It doesn’t have to be, there’s no law that says that your case manager has to be your, your language arts teacher, but it, it’s helpful when it is, because then you have direct contact with a student. So you have your, your special education teachers, you have a case manager for every special education child, um, and then you have maybe a department chair or a facilitator or a Um, head special ed person in the school, in the school itself.

So, um, in the district that I came to, we called them instructional support teachers. Um, they didn’t have instruction roles, like they weren’t teaching a class. They were there truly to manage and make sure compliance with IEPs and help teachers implement whatever the IEPs were. Um, you might have a facilitator, the same kind of things in other districts.

And then you have your district. Um, like coordinators and, um, program specialists and then you have your director of special ed and all the people that are not physically in the school system, um, in the school. So the teachers are responsible for implementing it. You have your school psychologists that are there too.

Um, a lot of our districts around here have psychologists that work maybe with a couple different districts or different, um, school teams. They’re part of the IEP team as well, so they might be there to support, um, So everybody is kind of responsible for the IEP, but it’s the teachers and the, the case manager that are the, the meat and potatoes of making sure that that document is being followed and the data is collected on those goals and objectives.

Tonya: As we’re talking about who’s there, what role does the parent have in both of the plans? So Helen, do you want to start with the 504, with the role the parent has?

Helen: Um, well, they should definitely keep an eye on the fact that they have an annual meeting every year. Uh, maybe mark it in their calendar because even though the 504 chair hasn’t come up, Um, they, they may, you know, there’s changes and a lot of changes going on these days, right?

So that could slip through the cracks and really they like to tend to do it as it comes up. Like I, I try to do it within a couple weeks of the actual last year’s date. So, but that doesn’t mean that you as a parent can’t ask for it sooner. Just like one of my parents just did. She already did it on the second day.

And that was mainly to just kind of be proactive. And I’ve had a couple parents call me immediately and I’m like, well, am I doing meetings for a couple weeks? Um, let, let the teachers get to know your child first before they can really come in and say something about what the need is shown. So there’s a little bit of, you know, do you really want to come in too early and call for a 504 meeting or not?

If you’re seeing something serious that you know has changed and you got a different diagnosis over the summer, yes, you need to let that 504 chair know that. Once you’ve let her know, usually within a couple weeks, I’ve called a meeting to go ahead and add in that accommodation, um, instead of waiting two months.

You know, you don’t want to wait two months because there’s a lot of testing that goes on early on these days with iReady or… Gosh, people are doing map testing in the fall now, and even more so because of COVID, I think. Um, but I wanted to bring up the social worker. You should work, you know, the social worker is a good person in the building as well.

I’ve worked a lot with the social worker, and the parents get involved with her too, if need be. He, she. Um, but definitely the parents need to watch out for those dates. And you get a copy of your 504 when you leave there. Whether they’re emailing these days or handing it to them, I don’t know, but I can just tell you for sure you need to keep on top of that, mark it in your calendar, and be aware of when that date’s coming up.

Tonya: So Heather, what’s the role of the parent with the IEP?

Heather: Well, I think, um, besides the child as being the first important person in the IEP meeting, the parent’s the second. Um, you as a parent, You are the only consistent person that knows your child from beginning until end. So you are an equal member of that IEP team and you should have meaningful input at that table.

So you are that consistent, always going to be there. The gen ed teachers are going to change, the special ed teachers are going to change, the school cycle, everybody’s going to change, right? The only person that is there that’s going to be consistent is you as a parent. So your role at that table is.

It’s vital, right? You know the ins and outs of your child from birth until however old they are, right? Like, you know the ins and outs. Yes, teachers spend a lot of time with children during the day, but we don’t know them when they get home, right? You have an important role in being able to share the good, the bad, the ugly, what it actually looks like for your child.

So to me, You are one of the most important people to share information at that table about your child and your rights say that you are an equal member of the team, so you should also have the same information that the team does. You shouldn’t come to the meeting and be blindsided by an evaluation that was done that you didn’t know about or the district coordinator coming to a meeting and you’re like, why are they coming to the meeting?

Or, hey, we did this, but we didn’t know about it. You have that right. to have all of that information as you should. Again, you are an equal member of the IEP team and there should not be surprises at the table. You have the right to have all that information.

Tonya: So, I was thinking about this too. We, um, I spoke with, um, Dr. Kirk Adams and he suggested that, um, children with disabilities start taking a role in their future early on. And, and he talked about the IEP, and he said, you know, even, even as a young child, he would recommend that parents pull the child out of class to be in the meeting if it’s during the school day. Do you agree with that?

Heather: I 100 percent agree with that. Um, it’s harder for elementary kids to be able to share a lot of things, but they, keep in mind, this IEP is for them. Right. Right? So, I sat in a 504 meeting with a young lady. Well, young man and her family today, she sat in that meeting with us and she advocated for herself and it was the most amazing thing and the team was so excited that she was actually advocating for herself and had the most, like to me, when you hear a child say, I need this to be successful or I need that to be successful, or this is something that I struggle with.

That is so impactful. A mom and a dad or a grandpan or a guardian can say that until they’re blue in the face. But if you’re hearing it from a child or a young man or young adult, it is just so much more impactful. I need this to be successful. And, you know, people say, well, we can’t get our kids that maybe are nonverbal to participate.

Yes, you can. You can teach them, like I’ve had plenty of kids that I helped develop like a little PowerPoint slide that they shared about their personal information, like what they were excited about, what their favorite colors were, what their favorite activities were, maybe what their favorite reward was, like maybe like love Pokemon or something, you know, like get them as involved as you can, you know, maybe they’re not going to be, you know, talking like we are today and going on and on and on forever and ever, but get them involved.

And. It is special education and having an IEP is not a negative thing, you know, I say this a lot of times when I was in school, I feel like, and even when my parents were, you know, in school, special education was thought of as like, no offense, but the redheaded stepchild, right? Like you, you didn’t see kids with disabilities.

You didn’t, you didn’t know about it. It was kind of like, don’t, it’s this bad thing we got to hide. It’s not like that anymore. You know, your child does have unique needs and does maybe learn amazingly different, but we need to make sure that we’re tailoring that and really embracing those differences.

Because while they do have weaknesses, they have a ton of strengths that we need to focus on. And for them to come into a meeting and say, I need this, or I like this, or don’t you dare tell me and poke me on the shoulder, because that’s going to trigger me to, like, whack you. Right, right. So, like, I absolutely 100 percent agree with him that as early as you can, get them involved in their IEP meetings and teach them how to advocate for themselves.

And… Be an active role in their IEP and let’s, let’s get them invested in their plan instead of the adults doing it for you, you know, right? And I’d say the same.

Helen: I say the same for 504s. I used to pull the middle school students out of their classes or a lot of times parents would bring them in. So that’s another thing parents should do is just kind of talk to them.

Hey, I’m coming into the school today for a 504 meeting. It’s your 504 meeting. And. I’m all I’m all at the chair call you down when I’m ready for you So a lot of times we would call them down unless they’re gonna miss a test or something like that. I won’t I won’t do it Right. Yeah, definitely definitely high schoolers for sure.

Heather: Well, and they have high schoolers because you get a transition plan when you get to high school as part of your IEP and they want You to be involved But I do have a suggestion for you know families that might be listening to this and they say my child is shy But they don’t like to speak up and you know because I was that kid You probably never know it now, but I was.

I didn’t want to speak up in front of adults. I could speak to kids all day long, but you put me in front of my peers and I’m like, like just clam up. Um, they might be able to come to the meeting, but I suggest to them either dictate or write down like on a post it card, like a, you know, a little post it note, just some notes so that they don’t have to speak on the web.

They can read off of their card and say, this is what I did. So it just gives them another tool that maybe they’re shy, but they can just keep their head down. They don’t even have to look at the people in the room, but they still are there participating. Um, I also know it’s hard for some of our kids to hear the entire length of an IEP because we do have to talk about their deficits and the areas that they struggle with.

And a lot of our kids don’t want to hear that. And sometimes we just don’t need them to hear all of them, that stuff. I like to involve them as much as they can tolerate it, but I also want to see, let them share, hear the positives, give their input, and then you can dismiss them back to class. So even, they don’t have to be there for the duration of the meeting.

Some of those meetings can be, you know, two hours long. But, if they can come in and they can open up with their little PowerPoint slide, or their little note card that they brought in, and then they can just be dismissed. That’s a stepping stone for them to be there the entire time, eventually, down the road.

Helen: And a 5 that’s easier because it’s usually no more than 30 minutes. Okay. Unless it’s going to involve a bunch of people from the county and then that could go on for about an hour.

Tonya: Well, having, having two students in college right now, parents that are listening, no matter how young your child is, the sooner as, as Heather and Helena both said, the sooner you can get them involved in some way, shape or form, the earlier they’re going to learn.

That it’s okay to speak up for themselves, and they’re going to start hearing some of the words that they’re going to need to be able to use later to explain what works for them or what maybe doesn’t work for them. By the time they’re in college, they’re going to have to do all this themselves. And you can still help them, but they have to lead it by then.

And eventually, our goal is that these kids will graduate. High school, graduate college, whatever their educational path will be, and they’ll have a job of some sort. In that environment, they’re going to have to be able to know that, you know, I need to be able to take a break every so often, or I need to have, um, some, some way of muting the sound or something.

And if, if we can teach them when they’re younger during this time and to see other adults talking about it, it becomes matter of fact and just part of who you are and not a big deal whenever to that, to that point.

Heather: You’re right, and it also allows them to know what they can ask for. You know, what accommodations they do have that they’re allowed to ask their teachers for.

They shouldn’t always have to ask for it, right? But, if they know that I’m allowed to wear my headphones when it’s in, like, independent work, or I know that I’m allowed to ask for a break, then they know that ahead of time. There were so many kids, even when I was teaching, that I would say, well, do you know what your accommodations are?

And they’re like, what are you talking about? Like they had no idea. Or they would say this, right? Why are you pulling me for small group testing? And I was like, well, because you’re allowed to have that, you know, in your IEP and they just had no idea. So when they’re informed, then they can ask and say, Hey, I was supposed to have small group testing.

You know, because we make mistakes, teachers do make mistakes, there are things that, you know, if they’re supposed to have color overlays, we’re human, we might forget, so please give us some grace on that, but if a child knows that they’re supposed to have color overlays, then they might say, hey, that’s right, do you have the blue sheet that I could have?

Absolutely, so it helps them be better advocates for themselves.

Tonya: And I think it becomes more of, these are just tools that I’m using, and not a stigma against who they are. Because they’ve heard adults talk about it. They’ve heard it. It’s not this big emotional thing. This is just a little business meeting that we’re having to talk through it.

And think of the skills that our kids are learning sitting in that business meeting. They’re learning to work with a team. They’re learning to be part of a team of adults that are there. They’re the focus of what they’re talking about, but they are gaining skills just through that process.

Heather: Right. Yeah. 100%. Get them involved as early as possible at whatever that looks like for them. You know, a kindergartner is going to look different than a True. True.

Tonya: Your kindergartner may be coloring at the table instead.

Helen: And the teachers are happy when the kids are. Right. The kids being in the know, as a teacher, I’d be happy if they, like, reminded me about something.

Because if they have like 14504s in a classroom or in all their classes, it really is kind of hard to keep up with all of that. So if you don’t give somebody the extended time, you know, they’ll come up and they’ll remind you, Hey, you know, I need a little bit of extra time.

Tonya: Yeah. So. I’m thinking through here. I know we’ve been talking for a long time and I appreciate our listeners staying with us. But I think this is just it’s information I would love to have had when my kids were younger. I learned a lot of this through the years and asking a lot of questions. But I love the fact that we have both of you here to just kind of help balance this back and forth between the two.

The, we’ve, we’ve answered some of the questions that I had for you already just in our talk, which I think is good. But as we’re coming near the end here, um, I want to give you each a chance to give some final thoughts and advice that you might want to pass on, any little nuggets of truth that you want to, to, to give to our parents. And, um, Helen, I’ll let you start and then we’ll go to Heather.

Helen: Um, so I would say definitely if you see an issue going on and I think what a lot of people do, a lot of parents do, is kind of wait it out to see if things are going to get better. Um, I, I can understand that, especially if it’s a young child that you think and are hoping things are going to get better, but I wouldn’t let that ride too long.

Um, I would start talking to your pediatrician and kind of cluing them in at first. Um, always stay in touch with your teachers. Um, I don’t care if you have an IEP 504 or not. Um, especially if you know your child is having a writing issue, let’s say. Um, it’s best to go ahead and let them know ahead, so they’re clued in and they’re looking for it, right?

And then they can tell you, Hey, I noticed, I mean, I would get emails from teachers going, So and so, I’m noticing this about so and so. I talked to the mom. They might be contacting you as a 504 chair because I think they’re, you know, teachers are never going to say your child has ADHD or your child has this because they’re not medical doctors.

They’re not going to diagnose it as a company. I tend to say a little bit more because I always preface that by saying I’ve seen a lot and I’m suspicious that this might be going on and this is what you need to start doing because we’ll get involved with the teacher also on email. To keep abreast of what’s going on in the classroom, so I believe it takes a village, so it’s the parent, the tutor, and, uh, the teacher.

So then they are comfortable now with us and they’ll say something to us too, because they know we’re educators. So, I’d say jump, uh, you know, stay on top of it, be proactive, not reactive. Nice.

Tonya: Heather, you want to add to that?

Heather: Sure. So, you know, you earlier said that I was a master IEP coach and, and I am, and, um, you know, most people are like, well, what does that do?

What do you do? And again, I don’t like to call myself an advocate because comes with this adversarial kind of negative connotation and I, I come from a place of collaboration. But I also want to tell families, like, you know your child best, and I said that earlier, you are the most consistent person that’s going to be at that IEC table.

If you, if you feel like you have your intuition that something’s not right, please speak up. Please ask those questions. You aren’t alone. There are people out there like myself that can support you and help you get through, maybe decipher what does that, that gut feeling, that little like. Um, I’m not sure.

What does that look like? Feeling there are people out there. I also get asked a lot, when is a good time to reach out to somebody like myself? And I, I tell you, never, it’s never a bad time to, to reach out to somebody like myself. Like you don’t have to wait until you’re so angry that you’re, that you’re seeing red all the time.

It could be when you’re just like, things are going great, but I just wanna make sure, is there something else I could be doing differently or, Are we on the right track here? Because keep in mind that an IEP supports future education, employment, and independent living. So we need to make sure that we’re addressing all of those skills to get to a point, because eventually they’re not going to be in high school anymore, right?

So we need to make sure that we’re developing those skills, but you don’t have to wait to reach out to somebody like myself. Wait, don’t wait until it gets to be so bad that you’re you’re so frustrated with the team. Yes, please do it if you are there, but it also can be that you are. I work with families that are brand new to special education.

Like my youngest family right now is a 4 year old family. They’re getting into special education. Early on, and my eldest, um, is an 11th grader, so like I work the gamut, um, of, of needs, but it’s never too late, never too early to ask for support on, um, Interpreting what an IEP is and what special education is because, Tonya, you know this as a parent of children that went through the process, there’s just so much, like, acronyms out the wazoo, like, you don’t know what you’re saying. Right?

Helen: And it confuses teachers, too. Yes.

Tonya: And it keeps changing.

Heather: Exactly, like RTI is this today and it’s that something different, you know, tomorrow, but I’m almost like an interpreter that I can look at something and interpret it into like language that a parent can understand. So please reach out. There is support out there.

Don’t wait until you’re so frustrated to get support, you know, please ask for help as much as you can. But again, you as the parent knows your child best and if you feel like you need some help. Ask. Ask your team. Communicate, just like Helen said. Communicate with your team. Um, there are people there to listen.

Helen: And speak with other parents, too, because there’s a lot of parent groups, and that’ll kind of clue parents into what’s happening, because they’ve already experienced it, like yourself, Tonya, right? Right. Um, so, yeah, I would definitely say, another thing I want to add is, um, I love school systems and I love teachers and I’m not blaming them at all for what’s happening here, but they are not trained, um, to know all this.

So, you know, be aware of that and know even the counselors, they’re probably a little more trained, but don’t take everything you hear at the school to heart. Like, you don’t think there’s nothing more. That’s when you reach out to Heather and myself and ask more questions, like she said. Right.

Tonya: The, um. Some of our parents may have questions for you with us.

What’s the best way to get in touch, in touch with you? Helen, I’m going to let you go first because I want you to talk about, about the company and then, um, Share any, any contacts for links or anything like that and anything that they share, listeners, I’m going to put it in the show notes and in the description.

So you’ll be able to find it, um, but go and tell us that first and then Heather add to that anything else that, that, that’s still missing at that point. Cause, cause I know you both have some things together and some, something separate.

Helen: Yeah. Um, so, uh, they can reach me through going to my website and I have a contact us page there and they can fill it out right there and say what they’re wondering about, but it’s It’s info at I nfo at the company name Dynamis Learning.

I still have academy.com in there, even though I’ve changed it to Dynamis learning, uh, and drop the academy. But the U R L is still that way. Okay. So it’s info@dynamlearningacademy.com or you can go to the website and go to contact us and fill it out there. It’s gonna come to that same email. Um, okay, so I, I just wanna let you know I will jump into any 5 0 4 meetings and I’ve done that.

Um, and as we’re tutoring kids, if I see that I believe that’s the need being shown, I will nicely nudge people to go that way. Or I’ll contact Heather, because I think I might have sent her the four year old.

I didn’t even know myself a four-year-old could have an IEP.

Tonya: Alright, so Heather, what is your contact information?

Heather: Yeah, so if you have questions about, you know, 504 plans or IEPs, um, please visit my website, HeatherWrightConsultant. com, so, um, my first and last name, it is W R I G H T Consultant dot com. And on there, there are some free resources that you can download that I have available for you.

You just need to enter your email address. You can also schedule, um, a 30 minute free phone consultation with me, and I suggest that to all families. Reach out to me. There is no obligation. I would not be able to sell a ladder to a fireman if there was a fire, so I’m not going to force you into doing anything with me.

But, why not reach out and say, hey, can you support this or support, you know, I’m having trouble with this in the school system. Reach out to me on my website. Like I said, Heather Wright consultant. com. Um, Helen and I are going to be doing a collaborative webinar, probably October. I think we’re, we were planning September, but I think we’re going to have to push it to October.

Um, really diving in a little bit more deep into it. IEP is in 504. So if you want to get on that list to make sure that you get the no, either reach out to Helen or you can reach out to me on my website again. Um, and I will be doing some free parent trainings in the next. Probably a couple months. I haven’t set the exact dates yet, but if you’re looking for maybe how to communicate better with your, your school team or how do I write a parent input statement?

And I know we didn’t talk about that, but if you need more information about that, you know, reach out to me so you can get on my list for those free parent trainings. And if you want on the one for Helen and I. . Um, again, reach out to her at info@dynamislearningacademy.com or you can reach out again, Heather Wright consultant.com.

And I am on Instagram and Facebook at Heather Wright consult. So you can follow me there too.

Tonya: Okay. All right. So we’ll have just a list of all these contacts so you, you can go down and find them one way or another and, and if you’re on Instagram or Facebook, go ahead and, and follow them so that you can keep, keep up with what they’re, what they’re feeding back through that too, the.

Um, so you mentioned the, the training. What other projects do you have going on right now? I know you’re doing a lot of IEP and 504 meetings, I’m sure, but, but what else is going on?

Helen: I also have an advocacy brochure, and I have, if I haven’t given you that link, Tonya, I’ll provide that for you. Oh yeah, please do.

So they can just download that and, and get that, because that explains some things in terms of how that, what, what it is, how does that work.

Tonya: And then, um, Helen, tell us about your podcast. She’s, she’s another podcaster, so I want you to hear about what she’s doing there.

Helen: Oh, yes. The podcast is called Smart Parents Successful Students Podcast, and it’s on Spotify and other areas.

So, I usually have guests on there. Sometimes I’m even interviewing my own tutors or myself. Uh, and we talk about all kinds of topics, from SAT, ACT prep, to tutoring, to 504s, to IEPs, to… Helping parents out with self care even than moms. I’m rolling out my 95th Season right now. So the next one will be five more and i’ll hit i’m gonna have a party at 100 episode.

Wow You know, hopefully be a part of those last five right there hitting the hundred There’s already been a guest so we’ll have a party.

Heather: I wanted to thank tonya for having me on today and helen for seeing you I love always seeing your face, but thank you Helen and Tonya today.

Helen: Yes. Thank you, Tonya. Appreciate it. All right.

Tonya: Thank you. I appreciate you both being here and sharing your expertise on the 504 plans and the IEPs. It’s been incredibly informative and I think our families will really get a lot out of this. So thank you both.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Show Notes:Special needs parenting is hard! You can get lost in the process of helping your child through all the stages of growing up, and many parents lose themselves along the way. Our guest in this episode, Megan Gibson, understands how parenting challenges can cause a special needs parent to feel like they get lost along the way, and she’s made it her mission to help others find the freedom to be themselves.

During this interview, Megan emphasizes the importance of staying true to your values and vision as a parent, even in the face of criticism or uncertainty. Throughout the conversation, Megan discusses her relationships, both past and present, highlighting the importance of surrounding oneself with supportive people who share your values and vision. She also touches on the difficulty of the transition when your children become more independent and offers guidance on navigating this challenging stage.

Overall, Megan’s journey is a testament to the power of resilience, self-awareness, and the importance of staying true to your values as a parent. Her story is not just about parenting; it’s about personal growth, transformation, and self-discovery. Megan’s willingness to share her experiences is both heartwarming and enlightening, offering hope and guidance to others on their parenting and self-improvement journeys.

Connect with Megan:

WEBSITE https://freedtobeyou.com/
PODCAST https://freedtobeyou.com/podcast
INSTAGRAM https://www.instagram.com/freedtobeyou
FACEBOOK GROUP https://www.facebook.com/groups/freedtorediscoveryou
YOUTUBE https://www.youtube.com/freedtobeyou

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Meet Today’s Guest:

Megan Gibson is an Identity + Alignment Coach, Podcaster and Writer. An expert in the transformative journey of deep self-discovery, Megan’s specially formulated one-to-one process guides individuals to uncover deeply held intrinsic values and unique gifts. As a mother with grown up children, she understands the importance of leading by example in a world that lacks authenticity and vulnerability. Through the Freed To Be You Podcast, Megan inspires women to imagine a life and business where they no longer have to pretend to be something they’re not. Instead, she empowers us to embrace our authentic selves, step out of self abandonment and into full self expression. As a speaker, Megan shares profound insights and practical tools for unlocking personal clarity and emphasizes the importance of aligning one’s life and business with your values and vision, enabling you to take ownership and create the life you desire.

Episode #78: Parenting Challenges: A Mother’s Story of Finding Her Value###### (Recorded August 7, 2023)

Full Transcript of Interview:

Tonya: Meg’s welcome to Water Prairie.

Megan: Thank you for having me.

You’re welcome. We, um, if you’re listening, um, Megs and I met about a week ago. Well, we met before that, but we, we recorded another podcast about a week ago. And um, and I’ll link that one in the notes here.

So if you want to hear the other side of this conversation on, on that one, it, um, it was, it was a fun, a fun time getting to know each other a little bit more. And I’ve been looking forward to continuing our conversation on this one. So, um. So listeners, we’ve been, if you’ve been following us for this season, we’ve been asking each of our guests to come in with three facts to kind of get you a chance to get to know them a little bit better.

And Megs has agreed to play our game of two truths and a lie with us today. And so she’s gonna be sharing three facts or pseudo facts, however you want to look at it. With us and your job as a listener is to decide which of the three is actually a lie. And you can either put your comments in the YouTube, um, comments down below, if you’re watching that.

If you’re listening or reading on the website, then you can go to our social media, to Instagram or to Twitter, and leave your guess on the, on the post that matches this episode. So Megs, what are your three facts that you wanna share with us?

All right. So first one is that I started out as a hairdresser. The second one is that I hate the outdoors. And the third one is that I was a vegetarian for four years.

Wow. Okay. So there’s a very different types up there.

Our topic today, um, is a little bit different from what we’ve done before. I wanted to focus after, after meeting Megs and talking about what she’s doing with her podcast, I wanted to bring her on and to talk a little bit about the health of our parents, because a lot of times we tend to lose ourselves.

In focusing on, on these little bundles of joy that come in with sometimes a lot of questions and, um, and if you’re a parent who’s listening to this, more than likely you have a child who has some extra questions involved. And so I thought we’d start, Megs, by having you share your personal story as a parent.

And then we’ll kind of jump off from there. So could you tell us a little bit about like your, your, your own journey? Cause you have more than one child. You’re going to be surprised, listeners, to hear how many she has.

Well, I have three that I have birthed myself and I have, uh, four that I’m lucky enough to, uh, to bring up with their dad. So seven all together now. Most of them are over 15 now.

One little one that’s eight. So it’s, it’s a busy house, but it obviously started out with one of those. Uh, so I actually became a mother when I was 23, uh, 24, my bad. Uh, and I always wanted to be a mom. It’s just something that I know not every woman is like this or not every girl is like this, but when I was little, I always wanted to be a mom and I wanted to be a great mom, of course.

And so. Um, I’m not, I don’t regret starting that journey at that young age at all. I was already married for nine years by that point, so I started early.

Nine years.

Yeah, I know. Yes, I was a baby. Um, so yeah, when he, when my first one came along, I. I just felt like I remember holding him and just feeling so the only, like someone said, how do you feel?

And I said, clever. That was just the word that came to mind. Like I just created this and birthed this, you know, he was eight pound five. I think it was, uh, so he’s a big bundle of perfect perfection. Um, and he was the most calmest baby and. It was amazing. And I, I did leave the hospital though and struggle to, um, to feed him and with a number of other things.

I was away from my family at the time. And, uh, he’s 21 in October now. So this is a long time ago. Uh, you can do the math and work out. But I, I did end up with, uh, with postnatal depression. And so that was a journey in and of itself for me as I’m becoming a mom. Um, but Riley, my oldest one, is still very calm, uh, loving, empathetic, giving young man.

Uh, and so he was my eldest, and then about 19 months later, I gave birth to my second son. Now, backing up a minute, I all, I really wanted a daughter as well. I wanted one of each. I actually ended up wanting four until, uh, I share the next part of my journey. Yeah, I always wanted a daughter. And so when I found out halfway through, when I had the scan found out that he was a boy, I was upset about that.

And so then I think my, my postpartum depression started before I had him with, with him because I felt so bad for feeling that way. Right about, you know, uh, and so the reason I shared this part of my, that part of my journey is because it really, I don’t know that I got over that until a lot later, um, because it did, it did.

Creep back in often that those down feelings and those feelings of not being a good enough mom and not being good enough in general, and so when Levi was born, it was pretty traumatic. His entry to the world was more traumatic and that he actually broke his collarbone During the birth. So that was and I’ve always kind of thought that You know, that, that has contributed to some of the things that he’s struggled with in his life.

I don’t know if you’ve looked into any of that, but I’ve definitely, you know, found studies that, that have proved that a difficult birth does tend to, you know, contribute to things later in life. So, but I, I loved him immediately, of course, uh, and I fell back into that, that role of trying to be the best mum I could be and get through my, you know, how I was feeling about it.

Um, And, as he got older, I found that he’s different, different to Riley. He was a lot more spirited, even as like a toddler. He was a lot more get up, he had a lot more get up and go. He was a lot more, um, assertive in the things that he wanted and didn’t want. Uh, which, you know, I just thought, well, they’re just different.

They’re all different. And I didn’t think anything about that. Until he, uh, was around four and not to get controversial, but I feel like he immediately changed overnight when he had his four year old immunizations in Australia. That’s all. And I, I know that that’s different to you guys, but we have like, there’s a whole bunch of them that they have at four and I, I noticed him change.

He started having, um, meltdowns that were this, just, it was, I mean, if you’re listening and you’ve had a, you have a child who’s literally just broken down in front of you and you have no idea what’s going on or what’s caused it or how to deal with it. And you already felt how I felt about. Being a mom, which is the opposite to how I dreamed about it as a girl, uh, it was really, really hard.

And so I already had another child by this stage, my third child, who was the daughter that I wanted, and she was as calm as the first one. She’s even calmer than, um, my oldest one. And so that’s when I kind of realized, like, something’s not right here. Uh, and it was around the time that he went to kindergarten.

Um, obviously, like again, I’m not sure when your guys go to kindergarten, but in Australia they go at four and he didn’t want to leave me. He didn’t want to, he was just, he was this child who was full of contradiction. Like he wanted to do everything himself and he wanted to do everything his own way, but he never wanted to be away from me.

And so there was this real separation anxiety that took place. And I think now knowing what I know, it was just that he, he didn’t. the world the way that we do. He, he had, he has, and still he’s 19 now, very, uh, tunnel vision on how he thinks things should be. And he’s always been like that. So he, um, he struggled going into school and that’s kind of when I, when I started to, to think, look, there’s something not right.

And perhaps we should, um, you know, see if we can get a diagnosis because he started. You know, preparatory school the following year, and there was no way he was going to get any help without that. Again, that’s how it is here. So, I did start going down that road and had this real contradiction, which I now understand a lot more having done some of the work that I’ve done on myself and now do with others.

I really didn’t want to have a label for him. Uh, but I did get a diagnosis and he was diagnosed with high functioning Aspergers and ADHD. And so he’s, he’s really, he’s still a very emotional child, like, as in, like, he’s, he’s a lot better now, obviously, but at that point he was very emotional, he didn’t, he would, one minute he would be fine, and the next minute he would be, you know, on the floor, or throwing things, or whatever, and so one of the things that I really struggled with, At that part in the journey was how that reflected on me.

And so there was this kind of like circle cycle that I would get in where I’m trying to help him. And this stuff would happen in public, it would happen in, you know, in the schoolyard or in the, you know, waiting to go into class, coming out of class, a lot coming out of class because he was just so overstimulated.

Uh, and so I felt, I started to feel ashamed of it and really it affected my, how I viewed myself and then that in turn affected how I parented and then it was just this cycle of, You know, not very nice feelings, which, as I said earlier, were never really dealt with as well as they could be because I had started, you know, with that depression that I had after becoming a mum.

So. Yeah, like that was kind of my, my intro into this world that we’re gonna dive into a little bit more. And so it really did affect what the dream and the vision that I had. Of what my journey through motherhood was going to be like, and what type of mother I was going to be, and, uh, you know, all the things.

And I, you talk about, you know, dreaming when you’re little, I think, I don’t know. I, I, I meet women who didn’t have that, but from the time I was born, it was like, I was going to be a mom one day. That was just how it, you know, I took care of everybody else’s children. I was, my mom talks about me being like 10 and 11 and all the children in the neighborhood be following me around everywhere because it was just, I was, I was the one everybody called to babysit.

It was just. Just that, that mom and um, and so it, I think a lot of times that is hard, especially when we end up with a child who has a diagnosis of some type, it, it goes against what we, what we pictured. Um, so, um, and then here you have three children and you’re still young, you’re still in your twenties during all this time with it.

Um, so, so to clarify, so in the States when the child turns five by September 1st, they start kindergarten. So you start. During preschool really, what, so some of ours will go to preschool and some will stay home until that point. Um, if our children have been diagnosed with a disability, then they will go at three to a public preschool, where they help to kind of get them ready, and that’s where they can provide therapies that they need during that time.

That’s amazing.

And then you talked about the preparatory, is that the next year after the kindergarten?

Uh, yeah, so prep is, uh, like your preschool. So we have kindergarten and then we have prep, preparatory, yeah, and then grade one. And so, uh, yeah, so we have a kind of.

So here it would be a preschool, a kindergarten and then grade one.

Okay. So just to kind of figure out where, where we are during that time. And then, um, so you don’t have the earlier MMR vaccinations at all. You have them later.

We do. We do.

You had them earlier too.

Even with a whole bunch of other things at ball.

Okay. So, so before they go into this public setting, they’re getting all their vaccinations ready, I guess.

Okay. So just to kind of, kind of put all that together. The majority of our listeners are in the U. S., but we do have them around different areas. And as we’re finding, whether you’re in Canada or wherever you may be, everything’s a little bit different. And what our. processes if your child’s in the public, uh, educational setting.

So thanks for clarifying that. So, so at this point, so you’re in your mid to late twenties now you have three children at home. You have a diagnosis. Now, how did you wrap your head around? Did, did you understand anything about Asperger’s or about autism at that time?

No, but I am somebody who. It is a bit of a sponge.

I love to learn. Okay. I like to understand how, uh, things work and why they are the way they are. Right. Um, I’m like that with human beings too. We’ll talk about that later. Um, but I, I did. I wanted to fix it because I was struggling. I didn’t know how to handle it. Um, I was, you know, on that cycle. So one of the things that I was very lucky to be pointed in the direction of this place called, they’re called Minds and Hearts and they specifically work with kids on the spectrum.

And so they met with the parents and the children separately and together, so I would have, um, half an hour to sort of talk to, to the therapist by myself. And that’s usually the point where I would cry a lot, uh, and write everything out and tell her how it’s been since the last session. And, um, and then she would have, uh, a good half an hour with him and he would, they would do, um, that he would have a chance to talk without me there.

Um, but he would also do, and this is from like when he was like five years old and they would do, um, drawing and play games and, and, you know, set up, focus on strategies to help him deal with the world around him, basically, um, more than, more so than deal with himself as to help him understand the world because one of the things that I’ve, uh, I came to learn is that they, they don’t really see things outside of their own, um, The way they see it is the way that it is.

So when things aren’t that way, that’s when they get triggered. Right? So she taught him how to understand the world around him so that he could relate to it differently. And I really loved that because I feel like that’s a very growth mindset space to be moving into immediately with this. So it was a really good organization.

I know there’s a lot of different ones out there and different ways of, you know, helping, uh, helping kids and helping parents, but I really loved their approach. Uh, and then, as he got older, and he started, uh, getting those boosts of testosterone that little boys get, then he started getting a little bit more, um, I don’t want to say violent, because he’s not violent.

He just, he just, it was, he was bigger, and he was louder, and it was more assertive, and so therefore it needed. different kind of attention, right? Because you can get out of hand. And so I was recommended go and see a pediatrician and they decided that they would put him on some medication. And let’s just say it was the worst nine months of my life and his, uh, without going into too much detail because I want to get back to, you know, what we’re talking about, but he ended up going from, you know, everything that we were dealing with. He would be, I would give him the medication in the morning, and then he would go to work, go to work, go to school, sorry, go to school, numbed out, and by the time, it only lasted six hours, by the time he got home it had worn off and Everything that he didn’t have, hadn’t had to deal with during the day hit at once.

So it was just a nightmare. So then they put him on another one that didn’t wear, wear off. And he wasn’t, it was actually for children, he was only 8 or 9 at the time. And you weren’t supposed to have it unless you were 14. He was also quite small, so they kind of, you know, had to cut the, the tablet up so that it was the right dose.

And anyway, long story short, he ended up suicidal. And that was terrifying. Yeah. So we got him off of that real fast. And, uh, and, and I actually. They said, you can’t take him off it, um, quickly. You need to wean him off it. Otherwise this can happen and that can happen. And I basically went home and threw them in the bin and let him run around in his underwear for six months.

We pulled him out of school and, and he was fine. He was fine. So I think what I learned from that was that I know my child, even though I didn’t understand what was happening, I learned a lot, a lot about what was happening. You have to go with your gut. I really learned to trust my instincts as a mom through that journey because it, yeah, there’s so many people that are speaking into your space, like different experts, different doctors, different therapists, and we have to trust our instincts.

And so I really had to learn how to do that as a mom because we do that anyway, whether we have children like that or not. And so I really had to do that one. And the biggest thing that was always playing in the back of my mind is how this was affecting my other two Children because I, my life revolved or our life revolved around, um, around him.

So, you know, they, they got the scraps of me a lot of the time because I really felt like that. And so then I had to deal with that, how I felt about that as well. Yeah. And so getting that education and understanding what was happening, uh, for me, it allowed me to tap into my own instincts as a mother. Does that make sense?

Yeah. Absolutely. We, we talk a lot of times about, and almost all of my parent interviews have been similar with us where you come to the point where you have to learn to go by your instincts. As, as, as you said, you know, your child you’re with this child 24 hours a day. A lot of times, you know, more of what, what’s going on. And you have a better chance of hearing what your child’s telling you than someone else because you can, you can read between the lines sometimes. And um, and so I, so a lot of, a lot of parents are saying the same thing. I came to the same thing myself. So um, so yes, I, I appreciate you pointing that part out because I think our new parents need to hear that they can trust themselves and um, they, they may need to get some education as they’re going through this, but, but they, they have a, as you say, a gut instinct.

They know kind of where they’re going there.

So, um, so thinking of it that way, how can parents find the balance between caring for the child, and as you say, not only caring for their child, but for their children, in your case. And. And many of our parents and also nurturing themselves because you’re so vested in him. And it sounds like at this point you were just so focused just in trying to help him survive because he was having trouble with the medications and with getting that balance.

And I’m sure. With just the insane, intense reactions that were happening with that first medication by the time he’s home and trying to do homework and family time, it affects everything. How do parents find that balance between all that care and the energy they have to put into their children and taking care of themselves and their own interests and their own passions?

Oh, that’s such a great question. As I got further into the journey and he got older and like after that medication, like after that point where we got him off everything in that six months that he was home. I changed his diet. I started to look for more, because it was medication, right? So then I started to look for more natural ways that I could help him because obviously that was something was happening chemically in the body, which is why they were trying to fix that.

So I started going down that road and as I got more into that space, I learned a lot about my own Mental health, my own physical health as well and what, the anxiety that I was dealing with because I would have so much anxiety, uh, about what was going to happen at any given moment, obviously as he got older, not so much, but definitely in this particular part of the journey that I was just referring to that I couldn’t even deal with myself.

So I had to deal with myself though. And so when we had that six months where we just had a reset. And all my kids, I took them all out and I homeschooled them all for six months. Um, I didn’t make them, they all wanted to do that. So, that’s what we did. And we had so much fun. We had so much fun because all the pressure of having to make lunches and be there at a certain time and um, do homework and do all of these things.

They were gone. And so I got a chance to be with my other children and I got it and they got a chance to see Levi differently as well because He didn’t have all those added pressures So we kind of flew under the radar a little bit and we just did our own thing for six months and then We looked at food and we, we cooked together and we all went on that journey together and everything changed after that.

So I’m not saying that we never had another issue. We did, but I approached them very differently. And one of the things I uncovered was that I needed to focus more on me. So I needed to make sure that I was doing something. Outside of, uh, you know, outside of looking after him and that I was looking, uh, spending quality one on one time with the other two and all of that.

And so one of the things I did, and that’s not in everyone’s capacity, but at the time I was able to do is I actually got an au pair. So an au pair is a nanny that comes to live with you. So I invested, it was 12, 000, Australian dollars, for the year. Uh, I didn’t have to pay it all at once, I paid it each month.

Uh, for this, this girl to come and live with us. She was from Germany, so she was very strong, which was a very good thing. Um, but she came and, and lived with us and became part of our family. And she, I, I still tell her this now, she’s just got married herself. And, uh, she’s in her thirties now, but… She saved my life because it allowed me to, uh, to focus.

I had a little side hustle that I’d started on the side and it allowed me to go out and. Um, and have time for me and achieve something again and feel like I had something outside of everything that was going on. It also at the time, I haven’t really talked about this, but it took a big toll on my relationship as well.

Uh, you know, obviously, so, you know, it gave us time to, to spend together at that point. Um. It just helped so much. It really, really helped so much. So obviously, maybe you can’t go to that expense or go to that much of an effort, but the point I’m making is that I had to make time for myself. That’s the way that I chose to do it, the way I had to do it at the time.

But if you’ve got family or friends or someone around you that can just actually, you know, take the pressure off or you put time in your diary to make sure that you spend time with your other children, then… Do it because that’s the biggest thing was just kind of I realized that in that time in that reset time That that’s what I needed And so that was yeah, that was a really good decision to do that.

And and once I Experienced that I’ve always had something on the side now when I say that I mean I’ve Been in sales for over 15 years I’ve always sold, uh, you know, have a little side hobby on the side. I’ve sold jewelry. I’ve sold, um, Tupperware. I have sold thermomixers, if you know what they are.

They’re like a, um, a mixer machine. Uh, so many things. Skincare and, and yeah, I earned a little bit of money doing those things, but it really wasn’t about the money. It was about me getting out and being around adults and achieving something and I could run those businesses on, in my own time, on my own calendar because it wasn’t working for anybody else, but it could just be something as simple as, you know, just taking an art class or a dance class or whatever it is that, you know, you’re interested in, but I, you have to make time for it.

It’s just, there’s no, It’s not going to happen otherwise, you know what I mean?

And, and you’re mentioning, you know, that, that you were fortunate in being able to have, have someone come in. We were going to call it a nanny coming in, but having an au pair, um, but parents are listening. You may not have that, but as Meg said, you may have family, you may have friends, you may have a neighbor, maybe someone that you could swap time with where you take their kids one day and they take yours, but then you could, could have that time.

Um, and maybe even having a night out with, with your, your, your, your spouse as well so that you can have that time. Cause, cause we do know it, it takes a toll on relationships because you’re so focused on, on the kids. And especially if you have a really intense child, like, like you’re describing here, It takes a lot of energy.

And, um, so taking, taking that time there, but I was thinking too, here in the States at least, um, some parents may have access to a respite program where they, especially if their child is maybe, um, medically fragile, where they, they need specialized care, they may be able to plug in to there. So, so parents, um, check some of the other episodes where we’ve talked about the same or check with your state and see what they, what they provide for you.

You may have some type of, of benefits there. for under your child’s name to be able to have somebody come in. Um, so yeah, so, so finding those practical ways to, to get that coverage so that you can take the time for yourself. And even your example of saying, you know, you, you weren’t going away to work every day.

You’re working, you know, you’re, you’re still there accessible to the children if something were to come up. But finding that, that time. And I know you’re doing the podcast now too. I know for me, even though my kids are in college. They’ve been home this summer so, so the house has been full, but doing this is, is part of my relaxation.

So, you know, it may be work, but sometimes work can be just that communication with other adults and getting out. I can remember when my kids were little going to the grocery store sometimes was my time away just to, and it wasn’t talking to many people, but I was out of the house and I was doing an adult thing instead of just a child thing all the time.

Totally.

So, so we talked about finding time for yourselves. We talked about, about that. Um, can you give us, I know we, and we, those are some practical steps there, but can you give us some other practical steps or strategies, um, as far as finding who you were, getting your focus off the kids? So work was one.

Did you have anything, anything else that, that you have or are trying that are working for you?

Well, I’m on the other side of the journey now, in terms, like, he’s a fully functioning adult now at 19. Uh, there’s a lot I’m doing now, but leading up to where I am now, I, I wanted to get to know him differently as well. And so I, before I answer this question fully, I do want to say, because it’s quite possible that he may listen to this himself, that he has always been, Outside of that, fun.

I’ve always said that’s lucky that he was so cute because that made it all easier. But he’s super smart. He’s a really, really, really intelligent. And so what I always struggled with was the gap between his emotional intelligence and his IQ. So that’s where, especially with, um, with Aspergers and high functioning Aspergers is they’re so smart.

They really are. They really are so smart, but they are emotionally, they’re a lot younger than, than they actually are. And so as well as that, they get older, so they look a lot older than, than they’re acting.

Right, right.

And I’m leading somewhere with this. Where I’m going with this is, I started to understand that more.

And I started to obviously do some of my own work. I’ve always been really fascinated with human behavior, never really got the chance until sort of this next period I’m talking about to really kind of look into that that much. But I am now an alignment coach or a life alignment coach, which basically means that I help people uncover their true identity, like who they really are, uh, and, and unpack the past and find the rescue, all the gold and the wisdom that, that there’s, you know, that’s been intrinsically placed there from all the things that we’ve been through and repack that in a way that serves us moving forward. So there’s a lot of gold in my story.

There’s a lot of wisdom in my story that I didn’t view that way. At this point in time, I didn’t really like thinking about it. It was hard. It was traumatic. There was anxiety. There was all these things. And when I started getting into what I’m doing now, which was about eight years ago, I saw the value in it and I saw the things that I’d learned.

And I really. started to go on that journey and so what I want to get at is that if even if you’re struggling right now and It feels like you know Heavy and hard there’s a lot of things that you’re learning that you’re maybe not aware of right now, and so when I got into coaching I I had to walk my talk, let’s say that I’m not somebody who can work with anybody who’s not doing what they’re telling me to do.

So I had to be that kind of coach as well. Uh, I really started to go deeper with my own work, understand myself better and free myself up from the guilt and the shame and all the feelings that I talked about earlier and see how much I had to offer the world. And so, that part of, this part of my journey has really been about healing myself.

So coming through, healing, understanding myself, as he got older he didn’t need me as much. Right, so I did a lot of mindset work with him in his sort of mid to, early to mid teens. Um, where we would just reflect something would happen and he would handle it how he handled it. Which was not always the best way.

And when we would wait, I would wait until he was calm and then I would sit down and I would just talk to him about it and we would just get introspective. I taught him how to be introspective and reflect back what he thinks he could have done differently and how he would do it next time. And look, it didn’t always work.

It’s taken a long time to get, but he is now gone from, from a child who is not very naturally empathetic. He’s a lot more empathetic now. Is he as empathetic as my daughter? No, she’s very very empathetic But he’s a lot better than he is now and I really put this down to like just stepping into that myself like stepping into that journey myself and then taking him with me and Helping him understand the good things about himself, you know Helping him understand what the positive things about how he is like he’s really really smart He picks things up really easily, but he has to be, he has to want to do it.

So there’s a lot of him realizing like, you know, some things we have to, sometimes we have to do things we don’t like, but we can choose to do them and then we might enjoy them more. Right, right. So helping me understand himself, but also me understanding me more. And so that’s really led to, uh, I really want people, and him as well, and especially people who, Who a little bit more neurodiverse like he is where I want them to see the value that they have.

I want them to really understand that they have something unique that’s, that they can offer the world and don’t have to be like that to like everybody. So now what I, I do is I help mums who are over 40 who feel that void of their children getting older. Right? Uh, for me, it was a massive void because once he was older and he didn’t need me.

Like you could see he, there was a lot that I didn’t have to do anymore. It was a big void. Um, so when I, who am I without that? Because that was a big part of my life, I had to rediscover who I was without that. But we all go through that, men too. We all go through that, um, without getting into the detail, cause it’s not what we’re talking about.

But I also lost, um, my marriage and through all of this, so that was another void that was created that I had to rediscover who I was without that relationship, without needing to be his full time carer, which I’m super proud of that, you know, I am genuinely proud of the man that he is, my son I’m talking about, um, because it’s been a lot of work for him to, he has a license.

He gets around. He wants to be a DJ. He’s got all these dreams and aspirations, and he’s fine. I didn’t think it would turn out that way. So, you know, celebrating him and then getting to know me. And so now I really want to help other women, mums with all the kids, mums with what I’ve been through, what I’ve been through.

Rediscover their identity, their sense of self in a way that helps them feel inspired by themselves as well, freed them up to be themselves and then have the second half of their life, which is we’re only halfway through, right? Be amazing and do something with all that beautiful wisdom that we’ve gained through that journey.

That’s unique to us.

But I think in a, you’ve described what a lot of our parents can, can connect with, whether they’re in the throes of that toddler time, preschool time, elementary time, even we’re so focused on helping our kids because they have, some of them are just, they’re just very tightly wound and they just need some protection and shelter.

And then we need, as you say, we need to help them kind of learn how to integrate into the world, because the world is there. They, they have to live in this world somehow. You’ve, you’ve accomplished a lot by the time you get this child. Into high school and and beyond. So now at 19, almost 20, you know, you, you, you can hear it in your voice.

You’re proud of who he’s become. He’s who he is though, because of your leadership and your guidance and helping him get to this point. So the two of you have worked together. He’s, he’s taught you a lot through the years, but totally my biggest that you taught him as well. . .

He is definitely my biggest teacher for sure.

Yeah.

So, so I love what you’re doing because you’re, you’re in a position to be able to help these moms. who may not see the value that they’ve had, the strength that they’ve brought through these years to start maybe redirecting that into investing into who they are and what difference they can make beyond just, just their little family and to the world around them too.

So, um, so I think it’s really important. It’s exciting what you have the chance to do now. And because you started so young, so you’re, you’re still young to be able to do this.

Yes, I am very blessed in that way.

But of course, of course, you said you still have an eight year old, so you’re not quite done yet.

Oh no, no, no. Well, yes, I do. I do. We now have Luke’s eight year old, so my youngest is 15. Uh, I, we get to do it all again together, so yeah, my new partner and I are very, one of the, you know, one of the things that I love about him is that we’re both kids first. It was one of the things that we connected over pretty much straight away and wanted to know more about each other because of that.

So we have them all under the one roof every second week, which we love and yeah, we, we often say we get, we get to do that again with him, you know, like bring him up together and his mum is amazing too, by the way, he’s excellent. Um, so we’re very lucky, but, uh, yeah, he’s a cutie. That’s for sure. Very, very different to mine.

Great. So we talked a little bit earlier about getting the respite care, having someone give you that break. Um, can you talk any about finding that supportive network? Um, especially cause, cause now you, you’ve been through change, not only in you pulled the kids home. During that time, just to kind of regroup and we, we did a similar thing with our family as well when they were a little bit older, um, which was one of the, it’s my favorite year of the kids growing up because we had that time together and, um, but.

So you had that you also had other change because because you were talking about your relationship And so you would have been by yourself for a while during that time before before you had your your current partner So that supportive network those times of change how how important is that network?

And how do you find that supportive network or are you able to speak to that?

Yeah, no, I can I was, I was pretty lucky, actually, to be honest. Um, well, there’s not really any luck in the world, is there? It’s labor under correct knowledge. Uh, but I, I was, I’m, I’m some, I love people. So I am somebody who I’m not afraid to, to reach out to those around me and.

And, um, you know, and say what I need a lot better at it now than I used to be, but, um, I always had people around around me. So I had a supportive, uh, family at the time, but, but we lived sort of away, like, about an hour away. So that wasn’t always possible. Uh, this is when. We took on the nanny because we needed someone in the house all the time, um, but after that and in the last sort of four or five years where I have been by myself, I have my coaching community, I have my clients, I think the biggest thing though is I know who I am, I know what my values are, I know what I need and I know how to ask for it.

That’s not always been the case. But when we get, when we do that deep inner work and we learn what we need, we learn what we need, we know what we need to align with values wise, then we can ask for what we need from the people that are going to be able to give that to us. Yeah. And I think that’s really important because I’m not going to say I always got that right because that wouldn’t be true.

I did have a patch there where I was not being me and I hated how I felt. Which, we can always go back and really focus in on how we’re feeling at the time, or if we’re around somebody and it doesn’t feel right, we know. Um, but yeah, I, I think that it’s surrounding yourself with people who have the same values as you, you obviously need to know yours, but the same values you want to be going in the same, have the same vision and and genuinely want care and want to help, help you.

That would be my answer to that, I think.

I like that. I like that. All right. So a final question for you before we get into to a little, little piece. I want to talk, talk about what you’re doing now, but I did want to ask. So for our parents who are maybe getting near the end of that caregiving time, and the kids aren’t needing them as much because they’ve done a good job, they’ve, they’ve gotten them ready for, for being these young adults that they’re becoming, um, any advice for Those that are having a hard time with that transition and not being needed as much anymore.

Oh, this is a big one. It’s hard. It’s really hard. My eldest has just moved out this weekend, depending on when you’re listening to this, but from the recording. And so I’m going through this in a big way because he’s been my rock for the last four or five years before, obviously he’s my partner now. But, uh, it’s hard.

I think, you know what, let yourself feel the things you’re feeling, but like, let’s not try and. Hide them or escape from them in unhealthy ways like it’s okay to feel that way And I think the best thing that you can do is just to turn inward and Really start to to get to know yourself ask yourself things like well, what?

What am I going to do now? Like, what, what do I want to do? What do I like to do? You know, uh, you can ask yourself all sorts of questions, but if you’re having trouble answering those questions or even finding the right questions to ask, then that’s when you, I would suggest reaching out to somebody who can help you go on that introspective journey and, and try and navigate that transition.

Healthily. Right? So, we want to make sure we come through that. We don’t want to do things that are going to create wedge between you and your children either because we want them to grow up and be successful and, you know, self sufficient was always my goal.

It’s our job as parents to get them ready for this stage.

So we need to not get in the way of that. And it’s, it’s not easy because we want to hang onto them and protect them and you know, um, and keep nurturing them, but we need to let them go. And we need, and I think the best way to do that is to focus on yourself. Yeah.

Nice. I know we need to wrap this up soon.

Um, if, if our listeners want to get in touch with you, what’s the best way to get in touch with you?

Yeah. So, I mean, I would love to speak to anybody who’s resonated with what I’ve been saying, um, and mainly around, like I said, around getting to know yourself, uh, because it’s not. You need that reflection sometimes.

You need someone else to look in and see what you’re not seeing. So the best way to get in touch with me is just to reach out to me on either my website or Instagram is my favorite place to hang out. If you’re, if you like Instagram, you can DM me there. But I’m sure we can put some some links in the bottom there for us to connect and yeah, I would be happy to jump on a call and see how I can help.

And that’s something that I offer. Complimentary just as a starting point just to make sure that I’m the right person to help you with that because there’s a lot of people out there that do the type of work that I do. And I think that you really can’t tell until you talk to somebody and you feel their vibe and you know that.

You know, you actually, you know what, this person gets me and they’ve been where I’ve been and I want to be where they are. So let’s take that journey, you know.

All right, so I’m going to put the links in the show notes, but tell us what is the website name?

Oh yeah, that’s a good point. Um, well, funnily enough, and it won’t be come as no surprise that my website is called freed2bu with a D.

Uh, and the D is important, uh, Tonya, because I could have it as free to be you, but. Freed, the D is like, it represents being on the other side of this journey, right? Like the journey’s never ended, but we’re, we’re in the second half, right? So we’re freed from that part and now we get to be us. So it’s freed with a D.

And that’s dot, dot com? Dot com. Okay. And your Instagram handle, what is that?

Freed to be You. Everywhere. If you go and search freed with a D to be you on any platform, you’ll find me. I’ve claimed them all.

So for those that want to find her, if you didn’t get it from that, check the show notes, it will be there with an active link for you as well.

So we get you there. But speaking of Freed to be You, tell us about the podcast. Tell us about what else you’re doing. Any projects coming up or anything like that?

Well, the podcast is, you can see, I like to talk. I don’t have an issue with that, um, at all. I wanted to, to be able to share my story in a way that would inspire other people to take themselves on.

So the, it has one purpose and is literally to give you permission to take that journey and take that step and free yourself up. And I talk a lot about self abandonment, which is not always bad, but you can hear that inside of my story, there was a lot of that. And we don’t really have a choice sometimes as mums, but other than to abandon the self in order to survive and look after our children.

Uh, so I talk a lot about that, but I really talk a lot about coming out of that into being fully self expressed. And so I, I think that until we feel free to do that, um, we’re always going to be self abandoning in some way. So that’s what my podcast is about. I share a lot about. Um, people’s stories who have been through this journey, um, people who work in a similar space to me, but it was a lot about parenting as well and relationships because that has been a big part of my journey and project wise.

Well. At this point in time, I’m still just offering my coaching. So I, um, I work one on one with people inside of a program called Ultimate Contribution Uncovered, and it’s a one to one program over eight weeks. It’s a deep dive into who you are. But it’s also extremely practical on the other side, where we set you up with a vision and a mission and goals inside of a framework so that you can go and align your life with those discoveries.

So it’s not just about this. Bluffy journey where we kind of figure out who you are. We obviously then need to learn how to be that. And so there’s a big part of that, um, process is actually learning how to step into it. Yeah. Uh, so again, the first step to do that would be to get in touch with me and make sure that that’s the right thing for you.

And I can share a little bit more about how that looks.

Excellent. Excellent. Well, this is, this is exciting. I, I like what you’re doing. It’s why we, we first met because I, um, I felt like we, we, we connected with our son’s stories with each other, which, which was a fun, a fun connection there. And our boys are a year apart, so they’re both.

My son’s turning 21. You’re just turning 20. So they’re, they’re right there, the same stage of life. Um, and it’s, it’s, it was, it was kind of fun to see the parallels between our journeys with them. It would be interesting if, if the boys ever, ever met each other, what their reaction would be to each other.

Yeah, that’s so true.

So we have a DJ and an athlete, so we’ll see. Maybe, maybe, maybe you never know.

You never know.

Well, Meg, thank you for taking the time to talk with us today and to, um, to share your story with us and also just some of the challenges of, of how our listeners can, can apply what they’ve heard from you.

So I, I really appreciate it. So thank you.

Thank you for having me. It’s the first time I’ve really shared this, uh, this part of my journey in this much depth, so it’s been an honor and, uh, thank you for giving me the space.

Well I, I appreciate your children being willing to let you share a little bit about them too, because I know it does, it does ask a lot to share their, their, their story as part of your story.

So, so thank you.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

**A Game-Changing Approach to Emotional Intelligence**Show Notes:Join us in this enlightening episode as we delve into the world of emotional intelligence with our guest, Melissa. She introduces us to a fascinating game that not only brings joy and laughter but also enhances our emotional awareness. Learn how Melissa’s innovative game helps individuals of all ages expand their emotional vocabulary, connect with others, and improve communication skills.

Discover how Melissa’s game fosters vulnerability in a safe space, allowing players to share and express their emotions effectively. Whether you’re a parent looking for engaging activities to connect with your kids or an educator seeking valuable resources for your classroom, this episode offers a treasure trove of insights.

Tune in to explore the transformative power of emotional intelligence and find out where you can access Melissa’s game and upcoming resources. Plus, don’t miss the bonus emotional tools she’s giving away for free. Join us on this journey toward emotional intelligence and strengthen your connections with those around you.

Connect with Melissa:

Website: https://emotioncommotiongame.com/
Buy the Emotion Commotion game: https://emotioncommotiongame.com/products/emotion-commotion-game
3 FREE Emotional Tools: Click on the green banner on Melissa’s webpage at https://emotioncommotiongame.com/
Facebook: https://www.facebook.com/emotioncommotion/

Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Meet Today’s Guest:

Melissa Price is passionate about empowering parents to teach their children emotional intelligence. She loves connecting parents to their children through play, as well as supporting parents in increasing their own emotional intelligence.

She has 20+ years experience teaching youth creative problem-solving, acting, art, goal setting, and more. Melissa is a Create Your Story Guide, a LifeStory and LifeStudio coach amongst many other methods of transformation.

As a coach and teacher, she is committed to empowering individuals to create their best lives by cultivating emotional intelligence and self-awareness.

Melissa is the owner of Creative Family Connection and the creator of the Emotion Commotion card game. She has helped countless individuals, from children to adults, develop greater self-awareness, empathy, and emotional regulation. Her Emotion Commotion game has been used in schools, counseling centers, in prison, and corporate retreats, and has received widespread praise for its effectiveness in helping individuals build emotional resilience.

The greatest joys in Melissa’s life are-

Her brilliant son and amazing daughter.
She is an over-the-moon grandma of 2 darling boys.

Episode #77: Unlocking the Secrets of Emotional Intelligence Through Play!********A Game-Changing Approach to Emotional Intelligence*******###### (Recorded August 28, 2023)*

Full Transcript of Interview:

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

https://youtu.be/10JHunH5Tpg###### The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

********Balancing the Needs of Every Child********Show Notes:In this insightful episode, join us as we delve into the complexities of special needs sibling relationships and the challenges of growing up with disabilities. Our guest, Melissa Ortiz, opens up about her personal experiences as a person with a disability and the dynamics she faced with her sister. From childhood memories to adult understanding, Melissa shares candidly about the trials and triumphs that shaped their relationship. She provides valuable advice for parents striving to strike a balance between their non-disabled and disabled children, emphasizing the importance of communication, age-appropriate explanations, and fostering mutual respect. Melissa also discusses her passion for advocacy and her efforts at ABLE Americans, a resource hub aimed at connecting families and providing vital information. Join us for an enlightening conversation that sheds light on the power of support, understanding, and unity within families facing the challenges of disability.

Melissa has been a guest on earlier episodes. To hear her story of growing up with Spina Bifida, check out Episode 72. To learn more about her work with ABLE Americans, be sure to listen to Episode 74.

Connect with Melissa:

Twitter: @dcbelleonwheels
Instagram: @dcbelleonwheels
Facebook: @melissa.d.ortiz.5
Email: mOrtiz@nationalcenter.org

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Meet Today’s Guest:

Melissa Ortiz serves the National Center for Public Policy Research as the organization’s Senior Advisor for the Able Americans Project.

In her role, she develops the project’s strategic plan, marshals key resources and helps oversee the implementation of the project. She also assists the National Center’s president in identifying necessary contractors, employees, strategic partners, stakeholders and donors and serves as a key spokesperson.

Melissa identifies as a “happy warrior” and is enthusiastic about driving a dialogue between people living with disabilities or chronic illness and policy makers across the political spectrum, especially conservatives. She has worked in the classroom in Nashville, Tennessee and in the nonprofit sector in New York City and Washington, DC. She was honored to serve as President Trump’s Commissioner of the Administration on Disabilities. The first female board member of The Conservative Caucus, one of the oldest conservative groups in existence, she currently resides in Washington, D.C. with her husband Tony and Service Dog Dachshund, Annie Oakley.

Episode #76: Special Needs Sibling Relationships and Disability Awareness******Balancing the Needs of Every Child*****###### (Recorded June 22, 2023)*

Full Transcript of Interview:

Tonya: So Melissa, welcome back to Water Prairie.

Melissa: Thanks. It’s good to be back.

I always enjoy talking to you. Yeah. As, as you know, if you’ve been following the podcast this season, we’ve been asking each of our guests to bring in some facts or pseudo facts about themselves to have you as a listener guess which are true and which are false.

And so Melissa has been a really good, um, um, companion with this because she’s been willing to bring in different ones for every episode that she’s in. So. We’ve tested her with her truths and her lies along the way. But today she has another set for us to try to guess with. So, Melissa, what are your facts for today?

I was once Miss Teen USA, the very first person to ever compete on crutches. And I love completing crossword puzzles in ink. And I’m an avid reader.

All right, so the crossword puzzles in ink. Even my dad wouldn’t do that. My dad was an avid crossword puzzler. So I am really impressed if that ends up being a truth. But we’ll see. Listeners, go and guess. Put it in the comments if you’re on the YouTube channel. And if you’re not, then check out Instagram and Twitter. Find the post and post your guesses there. And we’ll see which of you are able to guess the correct one.

So Melissa, today we’re talking about disability issues. It’s something that the podcast is about anyway. But specifically, I wanted to find out your experiences growing up in a family and some advice that you may have for parents who have more than one child.

I have one sister and she is almost 10 years older than I. My mother was married and had my sister and that marriage ended in divorce because of domestic violence. Then, my mother came home to live with her parents. And try to figure out how to put her life back together. And literally physically ran into her high school sweetheart. In the hardware store, 3 or 4 days after coming home. And… Less than a year later, they got married. And, then, you know, that is, they tried for five years to have a baby.

And, I, um, I didn’t show up until they had been married almost, um, Well, no, they had been married for five, they’d been married not quite five years when I showed up. And then, um, my dad died when I was five. So, here’s my sister who, um, for her Almost 10 years has been the princess on the satin pillow, the only child, very athletic. She was a horsewoman, still is a horsewoman. She was the youngest person ever invited to join the Atlanta ballet as a professional dancer. She had to choose between that horses because they do different things to your muscles and she chose the horses right when she was having to make that decision about did she wanted to pursue ballet full time or she want to ride horses and she said she wanted to ride horses.

She, my sister is also Um, we joke about her being the brightest bulb on the Christmas tree because she is brilliant in math and science, especially, and I, um, I can’t imagine what it must have been like for her to, you know, go through this situation with her, her dad. Then my mom marries her high school sweetheart who adored my sister and treated her as his own.

And then mom gets pregnant. doesn’t know immediately she’s pregnant, she’s sick for the entire pregnancy, and has to go to bed for a big chunk of the pregnancy, and then I was born two months early through a caesarean section, that they didn’t know if either one of us were going to live through. We both did, um, spoiler alert.

I think that I would be pretty resentful of the little upstart they brought home to. Because I was underweight, um, they weren’t prepared for me to be born, and my dad’s not a shopper, so my first bassinet was a turkey box. And, you know, my sister, and, and all of a sudden, the whole world revolved around, well, does Melissa’s diaper need to be changed?

Does Melissa need to be rolled over? Does Melissa need to be fed? Oh wait, mom can’t pick Melissa up because mom can’t lift anything heavier than a fork for six weeks after the birth. And so you have all these things.

I, I, I didn’t really understand until I got older and I began to look at other families who had a child with a disability because I was the child with a disability and I couldn’t wrap my head around it from her perspective. And then when I began to see her perspective, I thought, Oh my gosh, I think I would have put me on the back of my, of the bike and driven off somewhere and just left me somewhere to fend for myself.

Um, I was a brat. I just, not that I was undisciplined, but I was needy and I was pretty whiny about those needs. And there’s some who would say that a whole lot hasn’t changed, but they don’t know. They don’t know. And my sister is also very independent, just like I am.

My sister is much more reserved and much more analytical about, um, participating in anything before she jumps in, whereas I, um, tend to leap and then look very quickly behind me to see if the parachute has come out of the bag. And my sister didn’t understand things that I went through, um, until she, gosh, I don’t remember how long ago this was, about 25 years ago, she broke her femur and, in a, in a horse riding accident and, um, broke some ribs and that sort of thing.

And she called me three days after the accident and she said, I’m so sorry. I had no idea. I didn’t know that this is what you went through. And my immediate question was, and how much morphine do they have you on? Because that was so unlike her. Then, um, as in the last year since my mother has lived with her, um, we’ve become better friends, and I actually feel like for the first time in my life, I truly have a sister, and so that’s been a good thing, but it’s very difficult for both the child or children with disabilities and the non disabled children, and one of the biggest things that I would suggest, um, not to create a divide within the family, and my Kindle turned and went to sleep mode on me here, so let me pull it back up, not to create a divide within the family, but I think that Because it is so, anytime you have somebody, whether it’s a parent or a child with a disability, the family dynamic revolves around the neediest child.

I think, I don’t, I don’t remember who said it, but there’s a piece of parenting advice out there for mothers that says, or parenting, a parenting adage that says, you’re only as happy as your happiest child. I don’t know who said that, I think it was Irma Bombeck, and there’s truth to that. But, you know, whoever your neediest child is, is what the family dynamic revolves around.

Uh, for my husband, it was his sister because she was the oldest and she was the oldest cousin and she was the prima donna. And, and so unfortunately he likes to be alone a lot. So he said, I was very satisfied with not being in the spotlight, but it would have been nice if my ideas had been listened to every once in a while.

So I would say this to parents, schedule some activities to, to, to, Accommodate and be just for the kids who are able bodied if they want to go ziplining take them ziplining The way that other families in your social circle and your church can help is Offer a day of respite to the parents and say let me take your child with a disability over my house We’ve got a pool.

We’ll get in on the float We’ll do or we’ll do something that this child likes so that y’all can go and And be a, and I’m going to use the air quotes, normal family and do something that the rest of you want to do. And I just think I’ve seen that work so well in so many situations and it creates, it’s like a pressure valve release for everybody of, oh, our life isn’t forever going to revolve around this.

And, oh, we can still do things as a family that don’t include having to make accommodations for Harry or Sally, for lack of choosing two better names.

So with family dynamics, Um, whenever one child has a disability and their sibling doesn’t, how do you think that impacts a family?

Everything revolves around that child with a disability.

In the same way that if you have a child who’s a standout athlete and the other child is not, everything revolves around that child who’s the standout athlete. The And I, and I’ve always wanted to, there’s a mom in the NFL who has three sons who are all in the NFL. I think Gronk is one of the nicknames, it’s a shortened name of Gronski or something like that.

I’ve got to look that up. But people have asked her, how was it, what was it like having three standout football sons? She said, it was great because I only had to be in one place until they all went to different NFL teams. And then it was really upsetting because I was juggling, but it’s the same thing.

Um, with, when you have a child with a disability, you have to make time for the non disabled child and things that that, that, that child wants to do that don’t include the disabled child. And the non disabled child also has to make time for that sibling who has a disability of, okay, so these are the things that we’re going to do because to do otherwise creates resentment.

I saw it in my own home. I, I’ve seen it in countless other homes. Um, and. I had a, an experience that I will treasure for the rest of my life. When I was, my very first work trip when I was the Commissioner of the Administration on Disabilities, um, in 2017 was to a big conference and there was a sibling, a special breakout session for adult siblings of people with disabilities.

And I went because I wanted to hear what they had to say. And I told them, I said, I’m here. But I want you to feel free to let this be what you need it to be. I’m just here. And, and just to hear what they had to say and some of the pain and some of the the feeling invisible and some of the, you know, the different things that they all felt and they all were in agreement with each other and it wasn’t a, um, it wasn’t a gripe session.

It was, this is where I struggle and then you would say me too you would see me too around the circle go up and then I began to just sob as I sat in the corner of the room and I said we’ve done you a disservice because it’s been all about making sure you’re not your disabled sibling was included in things and you needed your own stuff and I said Is there anything, I said, let’s pretend that I am your disabled sibling.

Is there anything that you need to say to me to get it off your chest, so that you don’t take it out on your disabled sibling? And it came at me. And I heard, recently even, from one of the people that participated in that group, she said, I had to track you down on social media. And she said, I just wanted to say, thank you.

Because my second parent had died the week before I came to the conference and I was now solely responsible for a very low functioning sister with, um, with a developmental disability. And she said, I, I was angry and I just needed to tell somebody that. And the fact that you sat there and let me say that to you as if you were my sister cleaned my heart in a way that I was able to go back and love her in a way that I don’t think I would’ve been able to. So there’s gotta be a safe place for the letting off of pressure.

Yeah. I know with my kids, um, they had different types of disabilities. So my daughter was, was visual impaired from almost day one. It was, it was obvious there was something that she needed help with.

So we had the early intervention, we had all the extra help there. And then Christopher came along a couple years later and, um, and for all points and purposes seemed to be developing, typically. Some, some speech delays, but, but those were being addressed along the way. And, um, and so he took the back seat a lot of times whenever she was going through stressful situations.

But as he got older and it became more obvious that he had learning disabilities, that he had things that were invisible, and he was still taking that back seat, we started working on trying to make sure that we got him where he needed to be. To have that time and so we weren’t the parents who had them go together to everything They they had a lot of similar interest when they were young which helped me as a parent Because they both could go to karate together.

They both could do swim together. There were things like that And even with Emily being involved with the miracle league, they let Christopher come in early and be a buddy for her So they did that still together But we didn’t make him go to her dance things We didn’t make her go to his baseball thing, so they kind of had their space and we realized pretty early on that that was a healthy thing to do so that they could have that time with us, but it does take some coordination as a parent, especially if the income isn’t there to be able to pay for a babysitter or some type of activity for the other child to be a great way to offer them. support and help for that family. Um, or single parents who have more than one child. Can you, can you partner with them and maybe help that, that sibling? Or, or help the child who has extra needs? Take them for a while and let the parent go, you know, whichever way on that.

Um, so yeah, so I think for all different reasons, as parents we feel That juggling situation happens all the time. I want to go back though and ask you a little bit. Um, with your sister, so you said there’s a 10 year age difference between you. Um, and your sister more than you even went through some younger traumas between the, you know, losing, losing biological dad being part of her life.

But then also going through adjusting to a new dad. And then. Ultimately losing him as well, um, at, at some crucial ages for a young girl. So, so she had, aside from having a sibling that she may or may not have enjoyed that much. I’m just thinking she, she, she had a rough childhood.

She did.

Coming through those years.

She did.

Um, really impressed to have heard that she was equally skilled in ballet and in horseback riding. That’s pretty impressive.

She’s still pretty impressive. She, she’s. She is, um, let’s see, I’m 57, which means that she’ll be, oh wow, 67 in October. And, and so this, so, and she has a horse farm and she cleans out stalls every day.

She, um, gets on angry horses every day and, and she stands in the hot sun every day teaching kids. But she, she’s the strongest person I know. Because she has had trauma. And, you know, whereas I’ve had trauma for other reasons. She’s had trauma that. I am in awe of the things that she has been able to do with her life.

Right. So when you were, so when you were a baby, I know, I know you had, because you shared in the last episode about, um, some of the medical things that you had and, and some of those are crucial times during your life as well.

Um, but did you have the typical sibling I mean, are there times when you can look back when you were children in the home together? Because that wouldn’t have been for that many years, because she would have been leaving. Especially getting married at 17. You didn’t have many years where you would have really remembered it, but did you have family time together that, that you’re able to look back and remember? You know, some, some, some pleasant things that, that interchange between you with, with, with, with the ten year gap.

Oh, yeah. I mean, it was different. Um, and I know that she was forced into babysitting a lot. And that that was yet another, another…

And that’s something I would say to parents, don’t force your kids to babysit their disabled sibling unless they’re completely comfortable with it. Period. Full stop.

This is a sibling thing that’s hilarious. We had this low retaining wall at the end of our driveway from where they closed in the garage to make a den, and, um, she used to sit me on the wall like a little statue and then she would practice jumping over me. And that’s such a thing that siblings would do to each other. And I loved that she did that because it let me know that she saw me as a person and not just some little crippled girl. Before everybody jumps all over me for using the “C” word, that’s what we called it back then. I remember that and then different memories through the years of her being very protective of me. Um, she, I will never forget being at a shopping center and they sold me the wrong kind of film for the camera that I had. And she looked at me and she said, did you show them the camera?

And I said, yes. And she, I think I was maybe 15 at this point. And she slammed the door. She jumped out and slammed the door of the car and goes striding back into the camera shop with the film in one hand and the camera in the other. And I see her yelling at the guy behind the counter. And, um, there was like some sort of difference in the amount that the film cost.

And she was like, I’m not paying it, just give me the film. And so, and, and you see, and I see this woman behind her go, And handing her the difference in the money and um, You know, so I know that while there was deep resentment there, and, and, and, and, you know, and, not hatred. I don’t think it’s really that.

Maybe it was. I don’t know. We have not gotten that far since we’ve gotten to know each other as adults. We’ve never gone down that road. And, she said recently to me, she said, you know, I realize now that you have a strong survival instinct. And so much of what used to irritate me about you was simply you trying to navigate your way through life.

And that I felt like somebody had given me a sack of gold coins when she said that, because I felt seen and I needed to, I needed to feel like she understood what I, what I was trying to accomplish. And I cannot imagine. Going through some of the things that she went through and living through them. So I have enormous respect for what she has accomplished. So.

Right. So as adults, you have a good relationship now. And this is exciting to hear, too.

Just within the last year. I mean, we’re old and it’s time.

I know my kids, I mean, they’re both in college now. They’re starting their adult lives. They have different memories of different time periods. And I think that part, I don’t know that we can fix as parents. We can try and give them as much balance as we can, but what they internally view a situation as, that part, I don’t know that we can control that, because that’s going to be based on their interpretation, their emotion at the moment.

What, you know, because, because they don’t even understand always why we do certain things, depending on the age.

No, and, and, and, and that’s, whatever it is, it’s going to stick.

Right, but I will say that my kids are diehard loyal supporters of each other. And, um, and, and that came over time because Christopher was born into the situation of being a sibling of someone that needed help.

Emily became that protector of him as it became more obvious that he needed some support and he needed kind of a cushion around him every now and then, especially when he was young and having even teachers abusing him, just, just emotionally. Um, with, with, with, with ridiculing.

Um, but they were a good support for each other and they have a closeness now as young adults because they, they walked through that together, but they were also much closer in age than you and your sister were. So that, and, and I never knew being boy and girl, if they would have that connection or not.

My prayer has always been that as adults, they’ll be friends. I feel that that. That is going to be the case because I see them now at an age where they should be totally opposites of each other, and their friends are very different, their personalities are very different, but they do, um, Migrate to each other to help each other if there’s anything they they text each other first if there’s a question or if they need support before they even text us sometimes.

Oh, that’s great Um, that’s the way that my husband and his sister are they are only five years apart and They are closer in age much closer in age very different home situation much more tranquil much more. Um, settled both parents Lived through their growing up years One of the things that was hard for me and my sister too is that my mother got into, there’s a, it’s, they call them the fundamentalists and it’s the Institute and Basic Life Principles, IBLP, or the ITA, Individual Training Academy, Institute Training Academy, something like that, that’s our ATI, ITA, something like that, um, that’s a homeschool thing and it’s very legalistic and My mother held up my sister.

My sister was pretty rebellious because I think of all the trauma and she was always held up to me as an example of who I didn’t want to be. And so it wasn’t until I left home and started college that I began to unpack all of those things and realize that mom, unintentionally put a major wedge in our relationship and our view of each other because my sister said I always thought you were the golden child and I said well that’s funny because My mother’s parents always portrayed you to me as the golden child because you came right home and did your chores and did your homework before you played and you were just little Miss Industrious.

And I came home and took a nap and watched TV for an hour before I started doing my homework because I just simply needed to rest. And that wasn’t understood.

So, um, so for family, so we’ve, we’ve talked a little bit about, about the childhood part and how you very connected with your, your sister now. But through that, and through families that, that you’ve interacted with as well, beyond, beyond your own family, um, what advice would you give to families that are struggling to try to keep that healthy balance between their non disabled and their disabled children?

Make sure that everybody has consequences for bad behavior. If they can’t be the same consequences for everybody, and sometimes children with a disability can’t have the same behaviors that your non disabled child has, you cannot expect… child who has autism not to vocalize and not to not to respond in the ways that their body responds to things but you can expect them to be you know to have manners and to behave and thing and I just think that there always need to be constant that the behavioral expectations need to be attainable and that they need to be clear And that there has to be some way of getting the child to communicate, all the children, disabled or not, to communicate back that they understand what is and is not appropriate.

Um, one of the most, and, or, you know, and, and to know what the child’s limitations are. And to, and to, While not judging the non disabled child by the same standard, just making sure that it’s, there’s an understanding of what is expected and that the playing field is level on expectations and consequences for not, for not behaving.

So… There has, there have to be limits. There have to be consequences. Nobody gets a free pass because they have a disability. That’s the worst thing that can happen.

I know for my kids, um, my daughter had an extreme fear of closed doors. So putting her in her room was a, would be a traumatic discipline for her. So separating her around the corner where she could still hear us was what she needed. So. There were different things. My son… You could isolate him all you wanted to.

His toes were going to become toys. There was just not really a lot that you could do. He would even ask you what the value of a punishment was before he’d decide whether he was going to break the rules or not. It was just…

I like this kid. I can’t wait to meet him. He is my kind of kid.

So the, um, but we knew, um, like the, we didn’t always put the children in timeout.

Sometimes we put the offending item in timeout. So the top of our fridge, a lot of toys were in timeout on top of our fridge for a long time. To the point where sometimes we’d find something up there and we couldn’t even remember how long ago it was put up there. Because we’d forgotten we even had it.

Exactly. And I, that’s a great way to do things. I think that a good parent when they’re at a loss will seek out other parents in similar situations. Yes. And this is another reason why I feel like what I’m doing at ABLE Americans is so critical to develop a resource bank so that there can even be an online message board or support group.

If you’re not in the same town, if you can at least get on Zoom and talk to each other and at least communicate that way, there’s a great value in shared experience and in the resource of, like, In talking to Johnny about how to handle the um, how to handle the radiation table, I, I don’t know what I would have done without her advice because I knew what needed to be done but I didn’t know how to ask for it and I was so beaten down and so exhausted from being so sick that I had forgotten how to advocate for myself in a way that was appropriate because there is appropriate advocacy and then there is. I want my way, dadgummit, and I’m going to just pretend that it’s about my disability when it has nothing to do with that. I just want my way.

When there are benefits, um, you know, even through the podcast, we’ve featured, um, groups like the ARC, um, the Miracle League programs, um, whether it’s a recreational group or a support group that you’re going to find, you’re going to find other parents that are in the similar path that you are at those locations.

And that’s where, as Melissa is saying, you’re going to find, um, those peers that you need that understand beyond parenting to children, beyond parenting, you know, typically developing sibling rivalries and everything else that happens. You’re also looking at how, how do you distinguish and helping to encourage positive growth in all of your children with this.

And so other parents in those groups are going to have the same questions, but some of them will be ahead of you and may have some solutions that they found that, that are working.

The thing that you have to remember about children with disabilities is that they are not their diagnosis.

They are first your beloved child. And as long as that is kept in mind, everything’s going to be okay. It may take a while to get there, but everything is going to be okay. If you keep in mind, you know, how, what would you want done for your non disabled child? Well, then do that for your disabled child.

How do you think parents can help their typically developing child understand and accept what their child with a disability has going on? Like, to maybe help foster that relationship between the children.

Hmm. Well, again, uh, and you have to know about me that I love the show Big Bang Theory. Okay. Uh, it’s, it’s, um, because I, uh, there’s this character, Sheldon, and he is level one. And he, each of the principle six characters in the show five of the six have something that makes them an oddball and the sixth one is a beautiful blue eyed blonde actress and wannabe and then she works at the Cheesecake Factory and one day Um, Sheldon’s roommate was talking about, why does he act this way?

Why is he this way? And, you know, and, and she rips around and she looks at him and she said, because the brain of his, the part of his brain that tells him how to act has a wedgie in it. And just, you know, and then it was funny, but it was a great explanation. And and I think that if parents can just be very, they don’t have to be overly technical.

They don’t have to be overly medical. They don’t even have to give too much information. Just give enough information to answer the child’s question. I equate it a lot like sex ed. Age appropriate. Um, what, what do they really need to know to understand the situation? Um, it may be Melissa’s legs don’t work like your legs.

I think that it depends on the child. I think you need to be very realistic and not scare the, the typically developing child to death, but help them, you know, be frank, be absolutely frank and say, this is the reality of this situation.

I’m going to ask you not to share this information with your sister or brother, that you know this, don’t use it as leverage, but you need to understand this about your sister or brother. Um, and I had friends who were more like siblings, and I had one friend who was just determined that I was going to learn how to walk.

And she was a freshman in high school, the year I was a senior, and sent me down a flight of steps because it was just beyond her why I could not concentrate hard enough to do it. You know, and she wasn’t, she was brilliant. She um, got a degree in chemical engineering and worked at DuPont. But she loved me enough that she wanted me to have the same experience as she was having.

I think that every sibling needs to know that it’s not up to them to create those experiences. And that it’s not up to them to fix their sibling, explain their sibling, but it is up to them to be a good sibling to their sibling to the best that they’re able. How would you want to be treated if this were you?

Oh, well, I wouldn’t want anybody to pick on me. Then don’t let anybody pick on your brother or sister. Right. Um. Right. And it, you know, and I keep going back to, um, it was perfectly fine for my sister to sit me on the wall and pretend to jump over me, but the moment that somebody in the neighborhood took out after me, oh, no, no, no, no, no, no, no, no, no, no, that was not going to happen.

And because my sister’s oldest child is only eight years younger than I, it was more like having a little sister. Right. And she was the same way. She could be obnoxious and gets frustrated with me. But heaven help anybody that ever made fun of me or laughed at me or anything like that. Uh, because my niece was a basketball and volleyball player and she was a softball player.

She was very scrappy. And she’d just flat take you out. No questions asked. And, you know, you just didn’t miss, mess with Aunt Melissa. She didn’t call me Aunt Melissa. She’s called me Melissa because our ages were so close. But I think it has to be, it’s be age appropriate. Again, going back to the, um, the sex ed.

Be age appropriate. Don’t give them more information than they ask for. Explain it in the simplest terms. And then be willing to answer follow up questions. To be frank. To be, you know, not, Put the child off of, oh, we’ll talk about it later. Because there may be, and then ask, is there a reason that you wanted to know?

Because somebody may have made fun of the sibling at school or out in the neighborhood and The, in the typically developing sibling may not have known how to handle that or how to address it. They may have been asked, what’s wrong with your sister? What’s wrong with your brother? And they may not have known how to answer that, so that may be why they’re asking.

I think it’s always important to get some context on why that information is needed. But to never not give it. To give it in the most, um, in the most generic and simplest, easiest understood terms. That’s what I was trying to say. Easiest understood terms.

Good answer. I like that. Alright, so Melissa, if anyone wants to get in touch with you, um, what’s the best way to get in touch with you?

I’m very easy to find. I am, um, Melissa Durham Ortiz on Facebook. My email is mortiz@nationalcenter.org and my personal email and my work email are very similar, so I had to think about it for a second, and then my Twitter and Instagram handles are @dcbelleonwheels. And that’s how you find me. I answer inquiries, um, I’m happy to talk to people by messenger, I’m happy to receive emails.

Um, in fact, that is the preferred way to get in touch with me, is by messenger or

email. All right. Excellent. Um, and do you have any special projects you want to talk, talk about? Um. Well, the, um, the resource, do you want, um, information?

We are. Yes, um, if you have special resources that you know about in your area, please tell me about them through an email because we are building an app.

One day we hope to have more than just a webpage with all the resources, but we hope to have an app so that all you have to do is put the diagnosis, the need, and your zip code in and everything within 100 miles will pop up. I’m also pulling together a presentation for four governors.

They shall not be named at this time that I’m going to go and talk to you about Medicaid portability. If you, if you are on Medicaid, you understand this all too well, but many Policymakers and lawmakers do not understand that Medicaid is not portable between states. And that creates a lack of opportunity for many, many people who have chronic illness, medical fragility, either themselves personally or they have somebody in their family that’s dependent on Medicaid to help cover the expenses of their disability.

So I am putting together a pilot program that I’m hoping these four particular governors will endorse and it will become eventually… Practice of the land.

Melissa, thank you for, um, for spending some more time with me today, and I look forward to the next time we have you back again, but, but thank you for sharing just your personal experiences with having a sibling and just even the good and the bad that you’ve gone through. And um, it was exciting to the future together as, as friends and sisters now, but thank you.

Thank you.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

***********Fred Rutman’s Story Beyond a Childhood Stroke***********Show Notes: In this captivating episode, join us as we delve into an extraordinary story of resilience, survival, and the unbreakable human spirit. Fred Rutman, the guest of today’s show, takes us on a remarkable journey through his experiences of childhood stroke, multiple health battles, and his unwavering determination to overcome them all.

Tune in as we explore Fred’s incredible journey of triumph and discover the resilience that lies within all of us. Don’t forget to subscribe, share, and leave a review if you found this episode as inspiring as we did.

Connect with Fred:

YouTube: The Dead Man Walking Podcast
Instagram: @repeatedlydf
Facebook: Repeatedly Dead Fred Author Page
LinkedIn: @fredrutman

Purchase Fred’s book: The Summer I Died Twenty Times: Because Lightning Does Strike the Same Spot Twice

https://amzn.to/3L54Mtj
- As an Amazon Associate, I may earn from this purchase.

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Meet Today’s Guest:

Fred was a business prof teaching Finance and Marketing until the summer of 2009 came crashing down on him, with a continuous stream of medical traumas, including his being clinically dead 20 times (There would be more to come). This left him with PTSD, Post-concussion syndrome, and ongoing anxiety. This would have crushed most people. But Fred had another issue. All of this was layered onto his pre-existing medical issues. You see, Fred had a stroke at birth. And it went undiscovered until his mid-30s. That’s not to say he didn’t have an ABI and its accompanying issues. It’s just he didn’t know how to describe his world, and if he could figure that out, who would he tell? The result was being forced onto permanent medical leave.

Fred has since been hospitalized 22 times, undergoing 12 heart procedures. The short story is that his heart was stopping. Each time it stopped, he collapsed, and hit his head, sustaining multiple concussions. They finally figured out he needed a pacemaker. Which was great, until the pacemaker failed in 2013, requiring two emergency surgeries. And it failed again in 2018, with more surgery required. There were additional complications in 2019 and 2020.

In 2018, Fred learned about intermittent fasting. His life hasn’t been the same since. He attributes the large majority of his recovery to the healing powers of IF. Fred spends much of his day talking to people about resiliency, overcoming adversity and living their best, healthy lives.

In summary, Fred shouldn’t even be alive. Nor should he be any level of functional. And yet, here he is trying to be a positive source for anyone who is going through their own trials and tribulations. It’s a power message from an incredibly resilient formerly dead person.

Episode #75: From Childhood Stroke to Triumph********Fred Rutman’s Story Beyond a Childhood Stroke********###### (Recorded June 28, 2023)

Full Transcript of Interview:

Tonya: Today’s guest is Fred Ruttman, a. k. a. Repeatedly Dead Fred. Fred was a business professor who taught finance and marketing until one summer when his life changed dramatically, including being clinically dead 20 times. But Fred’s amazing story began years before that traumatic summer. And today we’re going to be hearing about how he had a stroke at birth that went undiscovered for years.

And this is a story that you’re not going to want to miss. Fred, welcome to Water Prairie.

Fred: Thank you, Tonya. Happy to be here.

So, I’ve told Fred this ahead of time, but if you’re, if you’re new to listening to the podcast, we’ve been playing a game with our guests this season. And I’m asking each of my guests to provide three facts or pseudo facts about themselves.

And you as a listener, your job is to try to guess which one is true. Which two are true actually, and which one is the lie? And you can post your guess. If you’re watching YouTube, you can post it in the comment section. If you’re not, you can go to Instagram or to Twitter, find the post about this episode and write your guess on there.

And a week after we release that, we’ll post the answer. So, you can always come back and check what your answer is. So, Fred, are you ready to share your facts with us?

You betcha.

All right. What do you have?

Okay. Okay, um, well, I’m Canadian, so it’s the law that I played hockey. I played competitive hockey, college rugby, and I used to be able to bench press 350 pounds.

Number two, I’m Jewish, and I’m a priest.

And number three… I’ve written a book.

All right. All right. Listeners don’t go right now. Finish listening to this episode, but then make sure that you remember to go back and guess afterwards.

So, um, so Fred, your introduction for me was, was interesting enough just with your nickname and everything else.

But I want to get into that in a little, in a little bit, um, starting out. So, you had a stroke when you were young. When was that first discovered?

Uh, in my mid-thirties.

And what was happening in your thirties that they, that they found out about the stroke?

My sister, uh, became friends with a woman whose husband was, um, had a private psyche psychology clinic where he specialized in brain trauma.

And, uh, my sister’s friends said, you know, uh, I think Fred might have a problem. And he should get tested and I got tested and the doctor told me, you have like a severe right hemisphere dysfunction. You know, the right side of your brain is, you know, pretty much obliterated and, uh, and that’s pretty hard to, you know, to wrap your head around.

And, uh, so that’s where it all started, but it started to explain a lot of the things that I found difficult in life and. You know, thankfully they offered some level of, of therapies and treatments that helped me immeasurably. But again, you know, it was the early nineties. So, it doesn’t come close to, you know, the types of therapies and, and, you know, treatments that are available today.

Did they say why it wasn’t recognized when you were a child?

Well, I think just because I’m, you know, 390 years old, uh, they weren’t looking for things like that, uh, as a kid, you know, it just wasn’t that time. It was the early 60s. Um, and, you know, I, I think infant strokes, I’m told are more common than people realize.

Um, but you know, kids are just so neuroplastic that, uh, as they grow their brain, you know, adapts and builds new pathways and things like that without them even knowing. But I think, uh, it’s a, it’s a difficult thing for, for parents. When my parents found out they were devastated, you know, because I had been put in the camp You know, if Fred would stop being such a smart ass and apply himself, you know, he’d do really well.

Um, and, uh, you know, my parents had no, no reason to question that and they had a lot of their own stuff going on. So, it just, uh, I guess I found out when I was supposed to find it.

So, so you said it was your sister who recommended that you go?

My sister’s friend.

Your sister’s friend. So, do you have more than one sibling or was it just the two of you?

Yes, I have a brother.

Okay I’m just trying to think you know How large the family was too because I think that makes it harder to pick up on some things sometimes Especially I’m I I’m like you I was born in the early 60s the and so, you know things were different than they are today and the types of infant checks that were happening weren’t the same as what they have today.

So, so when you’re 30, they’re talking about how your brain is. And I’m thinking, all right, so how, how would I react to that situation? I think I would be like you were, but also at some point it’s got to click to that. Well, I’m still the same person that I was before they told me this. So, it’s, it’s still there.

It’s just that you, you didn’t know that part was there. Um, but did you have like when, uh, other than being a smart aleck, did you have any like challenges in school? Were, were there any like looking back on it? So, nothing’s showing up with that.

Yeah, there was a ton of stuff, but it was all just lumped in the same bucket, you know, Fred’s just not applying himself.

So, you weren’t trying, you weren’t interested.

Yeah, so what I know now that was explained to me probably six or eight years ago with a neurologist Um, I have a condition called hemiparesis. So, the body is split in half vertically, and my left side of my body is slightly paralyzed. All the way up and down, because the right hemisphere is…

So, I’m legally blind in my left eye, but yet for my entire childhood… The doctors just thought I had a lazy eye, so they kept patching me and trying to bring it up, but it wasn’t the eye that was the problem, it was that the brain couldn’t process anything.

Right. So, so they were aware of…

Tons of stuff like that.

Yeah, so they were aware of things that were there, but just didn’t have a name for the cause of it.

They didn’t know it was an issue because, um, in my book, which we’ll talk about in a little bit. Um, I talk about cognitive bias, like the doctors, once they decide on something quite often, they’re not moving off their spot.

So, if they don’t have a reason to, to look for something else, they’re just going to say, you’ve got an unresponsive lazy eye. It’s not common, but it happens. Tough luck.

We’ve, we’ve had similar conversations with some of my other guests that have come on where, um, well, like even, even my own family’s case where you, you run into a doctor who may mean well, but they don’t necessarily look beyond what they think they’re seeing in front of them.

And so, um, so I do, I do hear this a lot. And, and the types of conversations that I’m having with people who have had disabilities or special needs, it, it takes someone to continue asking questions and to keep, to keep researching to, um, to try and find those answers. Um, and I, I think this is a valuable conversation because even today, I think.

It could happen the same as it did with you if it’s not something obvious that’s, that’s jumping out at a doctor. Um, and so not saying that parents, if you have a child with a lazy eye, that that’s not what it is. Maybe that is what it is. But, um, but it, but as we’re always saying on this, you know, you, you want to be asking questions.

You want to be making sure that you’re. that you’re doing some research and that you’re, you’re advocating for your child. Um, so Fred, with, with elementary and also you started school on time, you, you walked before that, you talked when you typically would have been talking and everything.

Oh, did I talk? Yeah.

I’m assuming you’re not the oldest child, or are you?

No, I’m not.

Okay. The, um, the, the oldest isn’t always, always the, the, the talker with an attitude. Is it? No, the oldest is normally the one who’s more nurturing. Of course, I’m, I’m thinking half of our audience is going to call in and say, no, I, I, I actually am, am the old, the older one with an attitude.

But so, I’m thinking that you probably have done a little bit of research now on understanding what. The stroke was, do you feel that you’re, um, equipped to be able to talk about today’s level of what would be happening if a child were to have a stroke?

I think so. I think, you know, parents are looking for markers so much more than they were when I was a kid.

And, you know, the doctors and nurses are also more aware in the birthing room of things that might not be going right or wrong. So, I think there’s a huge advantage. Uh, this will sound funny to having a stroke now versus having a stroke in the 1960s.

So, do you know what some of the signs or red flags might have been?

Um, like if, if a parent today is looking at their child, what it would look like if a child to, to know whether they had had a stroke or not?

Well, I think you, like most medical things, you have to look for trends and groupings. So, if it was only that my lazy, I was lazy. Would be one thing, but if you’re seeing that your kid can’t learn colors because I can’t, I can’t do colors.

So, when you see different things, adding up, that’s when you need to take a deeper dive. I think. Um, even when we were learning to write, I know kids don’t learn to write anymore, so that might not be such a great example, but my handwriting is atrocious. I could not read right between the lines and the teachers were just like screaming at me for, you know, wasting paper and not trying and.

All these other things, um, so I had a comparative test done by this doctor, um, and they do a finger click test. So, they know, you know, they’ve been doing these for dozens and dozens of years, so they know approximately what a normal dominant hand should be able to do. So, I’m currently right dominant hand.

My dominant hand was performing at what a non-dominant hand should perform at. So, there’s, I’m going to guesstimate the number because I don’t remember exactly, but it’s probably a good 30% less. So, say you were supposed to be able to click 100 times. I was only able to click 70. Then they went to my left hand. And, oh my gosh, it was like, even way lower than that. So, it was, uh, pretty obvious.

So, do you think you were probably a left-handed?

It’s possible. My, um, left handedness does run on my mom’s side of the family. And, uh, I can put on a baseball glove and catch with either hand.

Okay. But throwing the ball?

Um, well, throwing the ball, because I’ve got the paralysis, that’s never going to be good. So.

Right. The, uh, yeah. And wasn’t, wasn’t thinking about that, that side of it. Cause I, cause I, I can play golf, um, right handed if I’m driving, but if I’m putting, I put left handed and, um, and I just, I don’t know if it’s visual or if it’s coordination, I’m not sure which one it is, but it’s just always been natural to put left handed and, um, and I can, I can turn it.

The other way around, but I’m not as accurate. with it. It just feels, feels funny. But I hit a baseball right-handed. I’ve never tried it left-handed. I don’t know. Maybe, maybe it would feel more comfortable if I tried it left-handed. But, um, but. I,

I bat right-handed. I golf right-handed. I played hockey left-handed.

So, yeah. So there, um, there, I think, I think there are a lot of, a lot of things like that, that, you know, it’s, it, it can pass over right and left sides. Um, so I’m trying, trying to wrap my head around this. So, you’re right. hemispheres where the damage was done from the stroke, which affects the left side of your body correct?

Yes. For the most part.

Yeah. And, um, tell me more about the paralysis that you’re talking about. So are you able to use your, I mean, you’re, you’re using your left hand while we’re talking here. So, like what, what exactly, like how, how much does that affect you or did it affect you when you were younger even?

Oh, it affected me a lot. Um, you know, it affects your balance. Uh, you know, it affects my depth perception, it affects my visual memory, all, all sorts of things. Um, I, I had, uh, an auditory issue. I could hear the words, I could understand the words, but I couldn’t understand them in a sentence. Uh, I couldn’t track lines while I was reading so I’d reread the same sentence over and over and over again.

So how did you do in school then? Like, did you have tutors that were working with you? What did you do to get through school?

No, I had, you know, my moments of, uh, Stephen Hawking brilliance. And then other days I was just me. So, you know, it turns out I am pretty smart.

Um, I just didn’t know how to learn, and we didn’t know that I needed accommodation. So, you know, after working with this doctor, I’ll, I call them the brain trainers, um, you know, I worked with them for a number of years and I was able to go to university and got a bachelor’s degree and then I went to graduate school and did an MBA, so I did make a lot of progress.

But, you know, it, it’s still nowhere near, uh, normal. So, as a…

So, you did all of that after you were diagnosed?

Yes.

Okay. So, you were in your 30s at the time?

Yes. Um, I don’t know if there’s a paralysis scale. I’ve never talked about this with the neurologist or my other doctors. So, if there was one from, you know, 100% being you’re totally paralyzed, I’d say I’m 25% on my left side.

It’s, it’s that much of a difference between the two sides of my body.

And has that improved since you did the therapy?

No. Not at all.

So, so, so that, because, because I’m wondering too, had, had they known, I mean, you know, it, we, we, we can’t go back to the sixties and, and fix what was happening at that time, but had they known, would getting the therapy right away have helped recover some of the loss that that you had and inabilities like motor skills and everything?

All right, I think most likely Again, because kids are more neuroplastic than we are adults. I mean you really have to grind to achieve neuroplasticity as an adult and You know, I’m still trying to do new things every so often.

I’ll try and draw you know, and so I’ll go on YouTube and You know, how do you draw a face for six-year-olds and, uh, things of that nature, because my dominant hand isn’t really good.

Right. Right. I’m trying to think if I were trying to do it with my left hand, it would, it would take more coordination for drawing to do things.

And if I were, well, I used to write with my left hand all the time, but out of practice now, it would be more awkward with it.

I’d like to think that today the, there are better modalities. for working not only with child stroke victims, but with adult stroke victims, there’s a lot more recovery.

Um, they just know how to, how to treat you better.

Yeah. I think, yeah, time has given more experience, um, more research has been put into brain health even with that. So, I think that’s, that is part of it there. So, parents who have a young child who either had a stroke at birth or before birth even during that process, or they’re, little bit older, but still in those early years. Um, what type of support do you think that they should have involved with them either as parents or just as therapists for their Children? Um, you’re talking about the doctor that you had worked with. Was that a psychologist or a neurologist?

He was a psychologist who had done some specialist specialized training in neurotherapy. Um, I think, you know, today you’d start off with somebody, the doctor getting you hooked up with an occupational therapist and, and a physiotherapist. And, um, you know, depending on the person, like different modalities will work differently for each person.

So even if you and I had the same brain injury, they’re like fingerprints. You know, mine is mine and yours is yours. And the therapy that works for me may not work for you. So, you might have to try a few different modalities to help your child along, but they’re, they’re out there and hopefully, you know, you’re covered by, you know, various insurances and whatever to help you along because it can be pretty expensive.

When you’re in, you’re in Canada and we’re in the U. S. and I know it’s, it’s kind of a battle no matter where you are as far as getting coverage for some of the, the therapies that you have. The, um. So, I, I did want to ask you, so in the intro I talked about, um, you having a traumatic summer. Um, I believe it was the summer of 2009.

Is that correct?

Correct. Yes.

Do you think that the stroke that you had at infancy led to the events that happened that summer?

You know, that’s a great question and I’ve asked my various cardiac experts and they don’t see a correlation. Um, they actually, they know what the condition is that that caused me to have that horrific summer.

Um, and it’s something you don’t usually see until men in their seventies. It hit me in my forties and just hammered me. And, uh, they don’t know why this happened to me. You know, these are things people can make a guesstimate. You know, they can say maybe your vagus nerve was damaged. Or. You know, something like that, but there’s no real way of knowing, but it’s, it’s a good theory.

Yeah. It’s, it’s kind of interesting. You know, wonder cause the brain controls everything. So, um, you know, how was that on there? Well, speaking of that summer, you have a book that’s out that talks about that. Um, in fact, the name of it, I believe is the summer I died 20 times. Is that correct? Do I have the right name?

Yes. So, the summer I died 20 times, tell, tell, tell us about the book. Um, oh, there, I’d say he’s, he is ready for that question. Um, those that are listening, we’ll, we’ll put the link in the show notes so that you can, can access that. Um, but tell, tell us a little bit about it, um, for anyone who may want to, to go and find that.

So, at the time I was a business professor, I was actually teaching an economic session and I was home marking papers. And, um, I suddenly woke up at my desk from what I thought was like a, a deep sleep and it was a horrific experience, and I didn’t know what was happening to me. Um, but the short story is my heart had stopped and, and it had stopped for quite a while.

So, the condition is called, uh, sudden onset severe heart block. So usually at heart block, it goes in stages. And I might have this reversed, so I think third degree is the least problematic, second is, and one is, you know, you’re likely to die. And uh, I, I went from three to one really, really quickly.

And uh, they just, you know, they kept, I’m an overweight, middle aged white guy, so they get heart attack, you’re having a heart attack, you’re having a heart attack, but then they would do the blood work and. The enzymes that show you’re having a heart attack weren’t there. So, but they, they were determined to prove I was having a heart attack.

So, it went on for months until, um, we caught it on film, uh, on a halter man, halter monitor. And, uh, then they saw what was actually happening. And I was in the hospital when that happened and they, um, I forget exactly how many days. Um, I had a good three or four more episodes. Right in the hospital and the best thing about all this It’s almost every time that my heart stopped, and my blood pressure would go to zero.

You have no oxygen in your brain and you’re clinically dead for 30 seconds or more. I would hit my head on whatever was the hardest thing in the immediate area. So, I was just layering it on to that original initial brain damage. It’s just, you know, you know, before we’re, we started recording, you were telling me about, um, the young man working with the toppings.

Yes. I’m just like loading brain damaged toppings.

So, your, so your heart is stopping. Your head is becoming, I’m assuming concussed at that point, if you’re hitting your head really hard. Um, and then you’re already dealing with things that you are trying to, to reverse through therapies and everything to, to, to get everything working in the, in the right direction.

Wow. Well, so this is, this is your story of that journey through that summer, correct?

It starts in that summer. Um, and it’s a tiny bit of a spoiler, so you guys can fast forward if you don’t want to spoil it. So, the fix for my condition is a pacemaker and they finally implanted a pacemaker in me, and the pacemakers are great while they’re working.

Oh, no.

I’m 100% dependent on a pacemaker to replace the electrical signals that aren’t working in my heart anymore. And in 2013, the pacemaker decided to fail.

That wasn’t very long.

No. Um, so we’ve got suspicions of. Of what might have caused that. Um, so, you know, we can go all area 51 on this and stuff like that.

But, um, the doctors again, didn’t understand why I kept clinically dying. Because that’s not something that they would look for. And finally, you know, they figured it out and I had a couple of surgeries that didn’t go very well. And in 2018, it happened again. So, you know, the odds of all of these things collectively happening to me.

Of any of these things happening, it sounds like.

Yeah. It’s just like in the billions and billions.

And you’re still with us to tell us about it, which I appreciate because that has been an, an interesting road. I’d say a rough road too. Um, I’m sure during the, um, cause any, any surgery is tough, but you’ve had more than just surgery going on with all of this. Well, you not only have the book out, but you also have a podcast.

So, tell, tell us about the podcast too, because this is a podcast audience, so they may want to come in and listen to what you’re doing over there.

So going with the summer, I died 20 times theme, and the Repeatedly Dead Fred name, um, I have the dead man walking podcast. So, there’s that dead thing. And I, I have four foundational issues that I talk about in, in the podcast.

So, the first is people who have overcome adversity. And there’s some pretty wild stories out there that, you know, I’m, I’m grateful I get to share and when people hear these, they know they’re not alone, but there is a lot of positive outcomes, despite what you’re going through. I had a lot of people help me get my book published.

So, I like to talk to other emerging authors and people in the publishing business to, you know, hopefully give them a boost. As I mentioned, I was a business professor. So, I love talking small business and financial literacy. And fourthly, the thing that has probably saved my life the most and helped me recover the most is intermittent fasting.

So, you know, I, I talked a lot about health and mental health, intermittent fasting. I probably talked too much about intermittent fasting, my friends would tell me, but, um, it’s truly, uh, the health benefits of intermittent fasting are just off the chart.

It sounds like, um, you’ve got, you’ve got a lot of different things going on with the podcast, but I’m hearing through all of it.

I think a lot of my audience may be interested in that. So um, those are listening or watching on YouTube, go over and check it out. Um, we will put the links to how to find the podcast. Are you on audio and on video?

Uh, I’m not sure I’m on YouTube. I’m also on Spotify and Apple and Amazon that I know of.

Well, this, this is really good. Do you have any other projects working, working on right now?

Well, I’m working on a follow up book, um, because it doesn’t end in 2018, um, there’s a few more heart surgeries. Um, I’ve had a couple of pacemaker surgeries that I think I’m the only person in the world who’s had these. Wow. So, my surgeon is, is a wizard. He’s like Harry Potter level wizard. And, uh, you know, my last surgery, which. Was last November. Um, it was supposed to be 25, 30 minutes and ended up taking three hours.

And, uh, you know, so there’s just, you know, complications that never happened to other people happened to me and, um, you know, my surgeons on the phone with, you know, his surgical mentor and they’re talking and saying, can we do this? Can we do that? Can we, you know, I mean, it was just amazing. And the, uh, there’s a nurse at a monitoring station for the pacemaker.

And she’s calling the pacemaker company to say, you know, what happens if we do this, and we’ll do that. And, you know, it does avoid the warranty, joking about that part, but, you know, I mean, there were a lot of people, uh, working really hard to make that last surgery very successful.

Definitely have a lot, a lot to say and a lot of stories to tell, thankfully, because I’m glad you’re still here among us.

Me too. Um, You know, people ask if, you know, well, I don’t want to get into the religious part, but, you know, somebody wanted you alive is, you know, a version of the, so, you know, what do they want you alive for, you know, you can only make your best guess, but seeing as I’ve been given so many opportunities, I think I have an obligation to try and help other people go through whatever they’re going through.

And that’s what I hope to achieve, you know, with the book and the podcast. And if I get some speaking gigs hint, hint to the audience, love to talk to you in person. Um.

So, he is available if we will have, actually speaking of that, how’s the best way for people to get in touch with you?

Um, they can go to, um, my Instagram, which is @repeatedlydf, I didn’t want to make it too long, so @RepeatedlyDeadFred, um, they can find me there. Or they can find me with my email, Repeatedly.Dead.Fred@gmail. And those are the two easiest. Or LinkedIn, Fred Rutman on LinkedIn.

Well, Fred, thank you for, um, for joining me today. I appreciate you sharing your story.

And, um, listeners, we’re gonna, we’re gonna talk a little bit more about childhood strokes in the coming weeks, but I wanted Fred to come in and tell us about his ’cause this was such an unusual situation and, um, and I, I, I, I don’t like that you’ve had to have all these things happen to you, but I appreciate the story behind them.

That’s not what you said in our initial meeting.

I know, I know my initial response was, “Oh good,” but that’s a whole other story, but, but thank you. Thank you for, for sharing it with, with my audience and letting us get to know you a little bit. And those that are listening, um, be sure to, to check out his book and his podcast as well.

Thank you, Tonya. Much, much appreciated.

View Details

In this interview, Melissa Ortiz, the founder of ABLE Americans, discusses the mission and initiatives of the organization focused on advocating for the rights and inclusion of people with disabilities. The conversation highlights several key points:

Focus on Human Dignity: Melissa emphasizes the importance of recognizing the inherent dignity and value of every individual, regardless of their disabilities. She believes that every person is made in the image of God and should be treated with respect and consideration.

Goals and Programs: ABLE Americans aims to create impactful policies, resources, and support systems for individuals with disabilities. Melissa mentions their plans to develop an app, a speaker's bureau, legal assistance, and a job finder tool. They seek to address a range of issues including education, employment, healthcare, and more.

Collaboration and Advocacy: Melissa shares her commitment to collaborating with various organizations, government agencies, and policymakers to promote inclusion and positive change for people with disabilities. She discusses her efforts to engage with politicians from both sides of the aisle to ensure that disability issues are properly addressed in legislation.

Championing Individuality: Melissa underscores the need to view each person with a disability as a unique individual rather than defining them solely by their condition. She advocates for breaking down stereotypes and advocating for policies that empower individuals to participate fully in society.

Involvement and Support: Melissa encourages individuals, families, caregivers, and educators to get involved by sharing personal stories, contributing resources, and connecting with ABLE Americans. She stresses the importance of joining together to create positive change and to support one another on the journey toward greater inclusivity.

Overall, the interview provides insights into the meaningful work of ABLE Americans, shedding light on their mission to create a more inclusive and supportive society for people with disabilities.

Connect with Melissa: Twitter: https://twitter.com/dcbelleonwheels Instagram: https://instagram.com/dcbelleonwheels Facebook: https://facebook.com/melissa.d.ortiz Email: mOrtiz@nationalcenter.org

Connect with ABLE Americans: Website: https://nationalcenter.org/programs/able-americans/ Twitter: https://twitter.com/AbleAmericans

Connect with Us: https://linktr.ee/waterprairie

Sign up for the Water Prairie Newsletter: https://waterprairie.com/newsletter Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Show Notes:

In this insightful interview, we sit down with Nathan Gutierrez, a remarkable individual with spina bifida, to delve into his journey of living with a mobility disability. Nathan's candid sharing takes us through his childhood experiences, family support, education, healthcare insights, and his inspiring path to independence. Join us as we explore his triumphs over challenges, his engagement in sports and social activities, and his valuable advice for parents and individuals facing similar situations.

🔹 Childhood and Family Support: Discover how Nathan's parents nurtured his independence from a young age, empowering him to overcome obstacles and actively participate in daily life.

🔹 Educational Experiences: Gain insights into Nathan's education within mainstream schools, his perspective on effective communication, and the significance of self-advocacy and Individualized Education Programs (IEPs).

🔹 Healthcare and Transition to Adulthood: Learn about Nathan's proactive approach to maintaining bladder health and preventing urinary tract infections (UTIs). Explore his journey from childhood to adulthood and the importance of gradually involving children in their healthcare routines.

🔹 Sports and Social Life: Dive into Nathan's engaging experiences with wheelchair basketball, youth sports, and coaching programs. Discover how these activities not only contributed to his physical well-being but also enriched his social interactions and self-confidence.

🔹 Tips for Parents and Individuals: Nathan shares invaluable advice for parents, emphasizing the significance of promoting independence, creative problem-solving, and collaborative approaches to managing mobility challenges.

🔹 Wheel Life Coaching: Nathan's latest venture, "Wheel Life Coaching," is dedicated to helping individuals and families with mobility disabilities navigate their unique journeys. Learn how Nathan's coaching aims to simplify information, provide tailored solutions, and empower individuals to achieve their aspirations.

Join us for this enlightening conversation, as Nathan's story reminds us of the power of determination, family support, and the unwavering spirit to thrive despite life's challenges. Don't miss out on this heartwarming and informative discussion – watch now!

Connect with Nathan:

Website: wheellifecoaching.com

Instagram: @wheellife_coach

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

View Details

Show Notes:

Have you ever heard of spina bifida? In this week's edition of the Water Prairie Chronicles, we’re talking with Melissa Ortiz, Senior Advisor for Able Americans. She’s sharing her story of living with a disability and how she has become a voice for others facing similar challenges. Join us as we hear about Melissa’s journey and gain insight into the power of advocating for yourself and your community.

In this interview, Melissa, who has spina bifida, shares her personal journey and insights into living with the condition. The discussion covers various aspects of her life, from childhood challenges to her experiences as an adult. Melissa emphasizes the importance of understanding and educating oneself about spina bifida. She highlights that individuals who face difficulties in school can often become exceptional teachers due to their unique perspectives. Drawing parallels with historical figures like Albert Einstein and C.S. Lewis, Melissa discusses how those who perceive the world differently can excel in their fields.

Melissa delves into her professional life, detailing how spina bifida has influenced her career. She speaks about the common health issues associated with the condition, such as bladder infections, which can pose serious risks. Melissa shares her personal struggles with health challenges, and she offers advice to individuals diagnosed with spina bifida, urging them to join support groups for a sense of belonging and guidance. For parents of children with spina bifida, Melissa advises seeking advice only from those who have firsthand experience with the condition.

The conversation also touches upon workplace accommodations and the importance of ensuring accessibility. Melissa emphasizes the significance of understanding the Americans with Disabilities Act (ADA) requirements and encourages individuals to advocate for their needs. She discusses her involvement in a project to create an app that will help people find resources related to their specific disability needs within their local areas.

Overall, Melissa's interview provides valuable insights into the challenges, triumphs, and strategies associated with living with spina bifida. Her candid discussions and advice offer guidance and support for individuals facing similar circumstances and shed light on the importance of awareness and inclusion.

Connect with Melissa:

Twitter: @dcbelleonwheels

Instagram: @dcbelleonwheels

Facebook: @melissa.d.ortiz

Email: mOrtiz@nationalcenter.org

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

View Details

Show Notes:

In this interview, Tonya discusses executive functioning skills and their impact on students with ADHD with Chris Fugelsang, an executive function coach and founder of Exceptional Path. They delve into the challenges faced by students with ADHD and the strategies that can be implemented to support them effectively.

Chris emphasizes the importance of executive functioning skills in students' lives, as they play a crucial role in academic success and overall well-being. He explains that executive functioning skills encompass a range of abilities, such as planning, organization, time management, attention, and working memory. These skills are essential for students to navigate the demands of school and everyday life successfully.

They explore the specific challenges faced by students with ADHD, which can include difficulties with time management, prioritization, and task initiation. Chris highlights the impact of these challenges on academic performance, as well as the emotional toll they can take on students.

Chris shares valuable insights into strategies that can support students with ADHD in developing and strengthening their executive functioning skills. He emphasizes the need for structure, routines, and clear consequences to help students stay on track. Chris also advocates for individualized accommodations and support based on each student's unique needs and strengths.

They discuss the misconceptions and misunderstandings surrounding executive functioning skills, noting that some people may mistake ADHD-related challenges for laziness or behavioral problems. Chris emphasizes the importance of understanding ADHD and providing appropriate support to help students thrive.

Throughout the interview, Chris highlights the significance of communication and collaboration between parents, teachers, and students to create an inclusive and supportive learning environment. He shares that executive function coaching can be a valuable resource for students with ADHD, providing them with the necessary tools and accountability to succeed in academics and life.

The interview concludes with Chris sharing information about his coaching services at Exceptional Path, where he offers executive function coaching for students with ADHD and executive function delays. His coaching aims to help students become more self-aware, develop executive functioning skills, and thrive academically and personally.

Connect with Chris:

Website: http://exceptionalpath.com/

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

View Details

Show Notes:

In this insightful interview, Tonya talks with Arianna Bradford, an expert on ADHD and founder of the "Chase the Chaos" digital summit. Arianna shares her personal experiences with ADHD, discussing the challenges she faced growing up, the impact of her diagnosis, and her journey of self-discovery. She emphasizes the importance of understanding the diverse manifestations of ADHD and highlights the misconceptions surrounding the condition.

Throughout the interview, Arianna addresses common stereotypes about ADHD, debunking the myths and explaining how ADHD affects individuals differently. She emphasizes that ADHD is not solely a childhood disorder and provides valuable insights into the specific challenges adults with ADHD may encounter.

Arianna sheds light on executive functioning and the difficulties it poses for people with ADHD, including time management, organization, and impulsivity. She discusses strategies to cope with these challenges, such as creating routines, using reminders, and employing various tools and apps.

The conversation delves into the relationship between ADHD and emotional regulation, highlighting the heightened emotional sensitivity often experienced by individuals with ADHD. Arianna shares coping mechanisms and encourages seeking professional support to manage emotions effectively.

Tonya and Arianna discuss the benefits of a supportive community for people with ADHD, acknowledging the significance of connecting with like-minded individuals who understand the challenges and triumphs associated with the condition.

Arianna further explores the link between creativity and ADHD, describing how ADHD individuals often have a strong ability to recognize patterns, which is sometimes mistaken for psychic abilities. She encourages embracing this creativity and incorporating self-care practices into daily life.

The interview concludes with Arianna sharing her upcoming "Chase the Chaos" digital summit, a platform for people with ADHD who enjoy focusing on multiple interests. The summit aims to create a community where diverse interests are celebrated, and individuals can learn from experts and share experiences.

Overall, Arianna's expertise and personal journey provide a comprehensive understanding of ADHD, breaking down stigmas and offering practical strategies for navigating life with this unique condition.

Connect with Arianna:

Website: https://youradhdone.com/

Instagram: https://www.instagram.com/thearibradford/

YouTube: https://www.youtube.com/@AdhDONE

Resource mentioned during this episode:

Chase the Chaos Online Summit: https://chasethechaos.thrivecart.com/ctc-summit-ticket/

Theta Wave Study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4973024/

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

View Details

Show Notes:

Welcome to another enlightening episode of Water Prairie Chronicles! In this captivating interview, Tonya is joined by Occupational Therapist Kristen Jaslowich, a specialist in early intervention for children aged zero to three years. Kristen's expertise in infant mental health and trauma-informed care makes this conversation invaluable for parents and caregivers seeking to better understand their child's sensory development and integration.

Prepare to dive deep into the fascinating world of sensory integration in young children. Kristen sheds light on the crucial role sensory experiences play in laying the foundation for all subsequent learning and motor coordination. Get ready to explore the eight senses, including enteroception, vestibular, and proprioception, and how they shape a child's ability to interact effectively with their environment.

Throughout the interview, Tonya and Kristen discuss common red flags that might indicate sensory challenges in children, from sensory avoidance to sensory-seeking behaviors. Kristen offers practical insights on the importance of seeking appropriate support and interventions for children with sensory integration issues.

Join us as we unravel the complexities of sensory development and its impact on a child's overall well-being. Whether you're a parent, caregiver, or simply curious about early childhood development, this episode promises to equip you with valuable insights and strategies to support your child's sensory journey.

This podcast episode provides entertainment and educational content. It is not a replacement for professional medical advice. For specific questions about your child's sensory integration, development, or health, consult with their pediatrician or a qualified therapist. The host and guest are not liable for actions based on the information discussed. Always seek professional advice for individualized assessments and recommendations.

Connect with Kristen:

Facebook: https://www.facebook.com/groups/647434890413466/

Instagram: https://www.instagram.com/kristengutinstinctpod/

Email: kristen@ gutinstinctpod.com

Resource mentioned during this episode:

Sensory Pyramid: https://bit.ly/sensorypyramid

Sensory Play Ideas: https://bit.ly/69sensoryplay

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

View Details

Show Notes:

Today, we have a very special guest with us, Jill Urbane, The Mentor Mom, who has been working with families for nearly three decades. In this episode, we'll be diving into the topic of early intervention for children from birth to age 3, and exploring the foundational knowledge, understanding, and skills needed to foster healthy growth, development, and learning in your child. So, whether you're a new parent or a seasoned caregiver, sit back, relax, and get ready to learn from one of the best in the business.

Connect with Jill:

Website: https://www.thementormomblog.com

Instagram: https://www.instagram.com/thementormom/

YouTube: https://www.youtube.com/channel/UCFQsS7XZAyDX1whB9ysRdoQ

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

View Details

Show Notes:

In this enlightening interview with Dr. Kirk Adams, we delve into the important topic of employment opportunities for individuals with disabilities and how parents can support their children in finding meaningful work. Dr. Adams provides valuable insights and addresses common concerns parents have regarding their disabled children's employability.

He emphasizes that individuals with disabilities can indeed find employment and have successful careers. The key lies in developing disability-specific skills and creating a strong support network. Dr. Adams encourages parents to connect with organizations and associations dedicated to disability advocacy and support, which can provide guidance and resources in navigating the employment landscape.

Dr. Adams highlights that while challenges may exist, there are numerous career opportunities for individuals with disabilities. Employers are increasingly recognizing the value of inclusive workplaces and the unique strengths that disabled workers bring. He stresses the importance of dispelling misconceptions around disability employment, such as the notion that having a disability automatically hinders one's ability to work effectively.

Throughout the interview, Dr. Adams emphasizes the importance of self-advocacy, resilience, and skill development for individuals with disabilities, highlighting that disability employment is possible with the right support and mindset.

For parents raising children with disabilities, Dr. Adams provides guidance on fostering independence, developing essential skills, and building a strong network of support. He encourages parents to connect with local chapters of disability organizations, seek mentorship opportunities, and leverage available resources to help their children navigate the path to employment.

In summary, this interview with Dr. Kirk Adams sheds light on the possibilities of employment for individuals with disabilities and provides parents with valuable insights and actionable advice. It reinforces the importance of creating inclusive work environments, dispelling misconceptions, and supporting individuals with disabilities in their journey toward meaningful and fulfilling careers.

Connect with Kirk:

Email: kirkadams000[@]gmail.com

LinkedIn: https://www.linkedin.com/in/kirkadamsphd/

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Resources mentioned during this episode:

Disability:IN - https://disabilityin.org/

Family Connect- https://familyconnect.org/

National Library Service for the Blind and Print Disabled - https://www.loc.gov/nls/

CurbCutOS - https://www.curbcutos.com/

EyeCBetter - https://eyecbetter.com/

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

View Details

Show Notes:

In this captivating interview, we delve into the world of postnatal depletion and its impact on exhausted mothers with renowned expert Christiane Panesar. Join us as we explore the fascinating link between baby 'colic', gut health, and mental well-being. Christiane shares her wealth of knowledge, providing invaluable insights and practical strategies to help mothers conquer fatigue, support their babies' gut health, and reclaim their own vitality. Discover the hidden connections between a mother's well-being, her baby's health, and the path to postnatal recovery. This episode is a must-listen for any mother looking to break free from exhaustion, embrace self-care, and thrive in all areas of life.

Please note, all information provided during this interview is for entertainment purposes only and should not replace the advice of your doctor and therapist.

Connect with Christiane:

Website: www.heart-food.com

https://www.facebook.com/postnataldepletion

https://www.instagram.com/postnataldepletionrecovery/

If people want to set up a free 60 minute Conquer Depletion Strategy Call, they can apply via my website: www.heart-food.com

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

View Details

Show Notes:

In this episode of the Water Prairie Chronicles podcast, we dive into the world of feeding difficulties with occupational therapist, Dr. Samantha Goldman, also known as Dr. Sam. Dr. Sam shares her expertise and practical strategies for helping parents navigate the challenges of feeding their children. From overcoming picky eating to addressing sensory issues, Dr. Sam provides valuable insights on nurturing healthy eating habits and creating positive mealtimes. If you're a parent seeking advice, parenting support, and effective mealtime strategies, this interview is a must-watch. Discover how occupational therapy techniques can empower you and your child to overcome feeding challenges. Join us as we explore the keys to enhancing feeding experiences and nurturing your child's development. Don't miss out on this opportunity to learn from Dr. Sam's wisdom and gain valuable insights into childhood nutrition and mealtime stress.

Subscribe to our channel and sign up for our monthly newsletter for more expert tips and exclusive content on parenting, child development, and creating a harmonious family life. Together, let's unlock the secrets to successful mealtimes and nourish our children's well-being.

Please note, all information provided during this interview is for entertainment purposes only and should not replace the advice of your doctor and therapist.

Connect with Dr. Sam:

The Food Explorers Podcast: https://podcasts.apple.com/us/podcast/food-explorers-podcast/id1659053842

The Food Explorers Membership: https://www.drsamgoldman.com/food-explorers-membership

Camp Food Explorers: www.drsamgoldman.com/campfoodexplorers

FREE E-Book: “9 Easy Tips to Help Your Child Overcome Feeding Challenges” - https://theot4me.com/free-resources/picky-eating-e-book/

Website: www.theot4me.com

Social: @DrSamGoldman

Resources for parents mentioned during this episode:

Feeding Matters: https://www.feedingmatters.org/

SOS Parent course: https://sosapproachtofeeding.com/parent-workshop-when-children-wont-eat/

The Out-of-Sync Child: https://amzn.to/3pl2QFt

Sensational Kids: https://amzn.to/3NPEi12

I am an Amazon Associate and may earn if you use the above links to Amazon products

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

View Details

Show Notes:

Looking for a unique and exciting way to explore the natural beauty of National Parks with your family this summer? Look no further than Park Pioneers, the new FREE program from Expeditions in Education. In this interview, we sit down with Dacia Jones, co-founder of Expeditions in Education, to learn more about the Park Pioneers program and how it can help families connect with nature and each other like never before. Whether you're an experienced outdoor enthusiast or just looking for a fun and educational way to spend time with your loved ones, you won't want to miss this conversation with Dacia. Join us for a fun look at how you and your family can participate in what the National Parks have to offer even if you aren’t able to go there in person!

Connect with Dacia and Expeditions in Education:

Website: http://www.expeditionsineducation.org/

Twitter: https://www.twitter.com/dacia92/

Facebook: https://www.facebook.com/ExpeditionsEd

National Parks Junior Ranger Program Books: https://spgfan.com/nps/junior-ranger-program-directory/

Purchase the Marvin & Huck books: https://amzn.to/46boYCP

** As an Amazon Associate, I may earn from your purchase, but using this link does not change your price for the books.

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

View Details

Show Notes:

Maddie Rogers, the General Manager of Howdy Homemade Ice Cream in Cary, North Carolina, recently sat down with Tonya Wollum on the Water Prairie Chronicles podcast to discuss her experiences in the ice cream industry and what makes her shop unique. One of the things that sets Howdy Homemade Ice Cream apart from other shops is their commitment to employing individuals with intellectual and developmental disabilities (IDD).

Maddie explained that this commitment came about after she completed an internship at Gigi's Playhouse, a nonprofit organization that provides educational and therapeutic programs for individuals with Down syndrome, autism, and other developmental disabilities. During her time at Gigi's, Maddie saw firsthand the potential of individuals with IDD and how they could thrive in a work environment with the right support and training.

Maddie emphasized that the key to successfully employing individuals with IDD is to provide them with the right training and support. She explained that people with IDD often learn best through repetition and clear, simple instructions. To accommodate this, Howdy Homemade Ice Cream uses a lecture-based training approach broken up into simple steps, such as a 1, 2, 3 breakdown.

In addition to providing training, Howdy Homemade Ice Cream also provides ongoing support to its employees with IDD. This includes regular check-ins with managers, opportunities for additional training and development, and a supportive work environment where employees are encouraged to ask questions and seek help when needed.

Maddie believes that employing individuals with IDD is not only the right thing to do, but it also makes good business sense. She explained that individuals with IDD are often highly motivated and dedicated employees who take pride in their work. They also bring a unique perspective and set of skills to the workplace, which can be valuable in a customer-facing industry like ice cream.

One of the things that sets Howdy Homemade Ice Cream apart from other shops is their commitment to making all of their ice cream in-house. This allows them to offer unique flavors that can't be found anywhere else. If you’re in the area, be sure to visit Howdy Homemade Ice Cream in Cary, NC, and tell them you heard about them on the Water Prairie Chronicles podcast!

Connect with Howdy Homemade Ice Cream:

Website: https://howdytriangle.com/

Instagram: https://www.instagram.com/howdytriangle/

TikTok: https://www.tiktok.com/@howdytriangle

Facebook: https://www.facebook.com/howdytriangle

Visit the Shop:

Howdy Homemade Ice Cream

370 South Walker Street

Suite 123

Cary, NC 27511

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

**Inclusive Schools Help Everyone!**Show Notes:As our understanding of neurodiversity continues to evolve, it’s become increasingly clear that our education system needs to adapt to meet the needs of all learners. Today, we’re joined by Dr. Evisha Ford, the Founding Executive Director of the iCan Dream Center, a therapeutic school that serves neurodiverse learners and their families. Dr. Ford is a leading advocate for inclusive education and has dedicated her career to helping schools create environments where all students can thrive. In this episode, we’ll be discussing how parents can help encourage their children’s schools to become more inclusive, as well as practical strategies that educators can use to support neurodiverse learners. So, whether you’re a parent, an educator, or just interested in learning more about neurodiversity, this episode is not to be missed.

Order Dr. Ford’s Book, Benches in the Bathroom: https://amzn.to/3qgaUrl

Connect with Dr. Evisha Ford:

Instagram: @dr_evisha (https://www.instagram.com/dr_evisha/)
Website: https://www.drevisha.com/
iCan Dream Center Website: https://icandreamcenter.com/
Facebook Private Group: Leading a Socially, Emotionally & Physically Safe School Culture (https://www.facebook.com/groups/6157723637618324/)
LinkedIn: https://www.linkedin.com/in/drevisha/

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Meet Today’s Guest:Dr. Evisha Ford is the Founding Executive Director of iCan Dream Center, a therapeutic school in Illinois, that serves the needs of neurodiverse learners and their families. She began her career serving inner-city homeless youth in Chicago. She is a former Assistant Superintendent, Director of Special Education, and Assistant Professor of Educational Leadership.

Dr. Ford is a sought after thought leader in schools nationally and internationally. She specializes in trauma-compassionate leadership, program design, cultural and racial equity, and effective school and nonprofit leadership. She is the author of Benches in the Bathroom: Leading a Physically, Emotionally, and Socially Safe School Culture. Dr. Ford was honored as one of the influential “100 Black Women in Chicago” for her educational contributions. However, her most generous recognition as “best mom ever” is granted by her two sons.

To learn more about Dr. Ford’s work, visit her website https://drevisha.com.

Episode #62: Creating a Culture of Acceptance*How Inclusive Schools Can Build Stronger Communities*###### (Recorded April 19, 2023)

(* Transcript will post soon)

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

**Meeting the Sensory Needs of Students in the Classroom**Show Notes:Discover how an elementary school music teacher from Ohio is revolutionizing education by creating sensory and emotionally inclusive classrooms. Through his personal experiences with ADHD and sensory processing disorder, Bryson Tarbet advocates for removing barriers and empowering students to embrace their unique selves. Join us on this episode of the Water Prairie Chronicles as Bryson shares his insights and strategies for incorporating music education to help students with ADHD and SPD develop self-regulation skills that extend beyond the classroom.

In Episode 61 of the Water Prairie Chronicles, Tonya Wollum interviews Bryson Tarbet, an elementary school music teacher from Columbus, Ohio, who is an advocate for creating sensory and emotionally inclusive classrooms. Bryson shares his personal experiences of being diagnosed with ADHD as a child and sensory processing disorder (SPD) in recent years. He embraces his unique way of processing the world and uses his experiences to shape his teaching methods.

In the Two Truths and a Lie game, Bryson reveals three facts about himself: he has been in multiple professional operas, a deer once jumped through his classroom window, and he aspired to be a paramedic when he was younger. Listeners are invited to guess which fact is a lie by posting in the comments.

The conversation then focuses on ADHD and SPD, with Bryson explaining that both are neurological disorders affecting how individuals process the world. He shares how ADHD manifests for him, often resulting in hyper-fixation and forgetfulness. In contrast, his sensory processing disorder is characterized by sound sensitivities, which can lead to overstimulation and mood changes. Bryson embraces these challenges and aims to create a classroom where students can feel comfortable being themselves without conforming to neurotypical standards.

Tonya asks Bryson about the importance of creating sensory-friendly classrooms. He explains that sensory needs are fundamental and meeting those needs helps prevent disruptive behaviors and promotes safety. Bryson emphasizes the significance of removing barriers and providing opportunities for students to regulate their sensory experiences, ensuring they do not feel punished for things beyond their control.

Regarding music education, Bryson highlights how it can help students with ADHD and SPD develop self-regulation skills. As someone who found solace in music, he believes it offers validation and allows hyper-fixations to be channeled into something the world values. Bryson mentions that music education teaches collaboration, teamwork, and understanding individual contributions. He appreciates the flexibility music provides for movement, allowing students to learn in ways that suit their needs.

Tonya and Bryson discuss how music education extends beyond the classroom. Music helps students understand their emotions and how different music can regulate them. By fostering introspection and reflection, music education equips students with tools applicable to various aspects of their lives.

Challenges associated with teaching music in a sensory-friendly manner are also addressed. The music classroom presents distractions such as instruments, bright lights, and sound triggers. Bryson shares strategies he has implemented, including fidget tools and headphones for tactile feedback and sound dampening. These accommodations are available to all students, not just those with sensory needs, to promote inclusivity.

In conclusion, Bryson’s interview sheds light on the importance of creating inclusive classrooms that address the sensory and emotional needs of students. He demonstrates how music education can be a powerful tool for self-regulation and empowerment, allowing students to thrive beyond the classroom.

Connect with Bryson:

Instagram: @ThatMusicTeacher (https://www.instagram.com/thatmusicteacher)
Website: https://www.thatmusicteacher.com/
Podcast: That Music Podcast (https://podcasts.apple.com/us/podcast/that-music-podcast/id1489497622)

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Meet Today’s Guest:Bryson Tarbet is a PreK-6th grade general music teacher just outside of Columbus, Ohio. He received his Bachelor’s of Music in Music Education from Ohio Wesleyan University his Master of Music in Music Education with a Kodály emphasis from Capital University.

Bryson spent his first year out of college as part of an elementary school intervention team and he fell in love with working with students with disabilities. Due to this experience, as well as his personal experience as a neurodiverse individual, Bryson feels very strongly about advocating for sensory and emotionally-inclusive classrooms.

Bryson started That Music Teacher, LLC with the goal of sharing different perspectives on issues pertaining to the lives of music educators across the country. He also hosts That Music Podcast, a podcast for elementary music teachers and is the educator behind the Elementary Music Summit.

More information about Bryson and That Music Teacher can be found at www.ThatMusicTeacher.com. Bryson can also be found on Instagram and Facebook @ThatMusicTeacher.

Episode #61: Sensory Needs Matter: Empowering Students Through Music*Meeting the Sensory Needs of Students in the Classroom*###### (Recorded March 14, 2023)

(* Transcript will post soon)

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

*Wheelchair Travel Information***###### The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Wheelchair Travel InformationShow Notes:Have you ever tried to travel while using a wheelchair? Does the thought of trying to get around while on a vacation cause you anxiety? Today, we have a very special guest on our podcast – Kristin Secor, an adventurous traveler who has explored the world in a wheelchair and while on a ventilator. Kristin’s journey with muscular dystrophy has not blunted her thirst for travel, and she has discovered some amazing tips and tricks for traveling with a disability. From visiting the National Parks to camping in an RV to traveling around the world, Kristin has seen it all, and today she will be sharing her insights and experiences with us. So, grab your travel notebook and get ready to plan your next trip after hearing Kristin’s story.

Connect with Kristin:

WorldOnWheelsBlog.com – http://worldonwheelsblog.com/
Instagram: https://www.instagram.com/worldonwheelsblog/
Facebook Group: https://www.facebook.com/profile.php?id=100073853057823
Twitter: https://twitter.com/WorldonWheels6

National Parks Access Pass Information: https://www.nps.gov/subjects/accessibility/interagency-access-pass.htm

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Meet Today’s Guest:Kristin was born with a rare form of Muscular Dystrophy, which impacts her mobility, strength, balance, endurance, and breathing. While her disease presents challenges, she is determined to live life to the fullest and hopes to help others along the way. A former mental health counselor now turned wheelchair-accessible travel blogger; she hopes to combine her love of travel with her desire to help others to inspire people with mobility problems to travel to places they may have never thought possible. Kristin has traveled across the United States and abroad and shares her accessible travel information with others through her blog worldonwheelsblog.com. Thus far she has been to four continents and twenty countries with the hopes of visiting all seven continents by the end of 2026. She also plans to visit as many US National Parks as possible.

Episode #60: Breaking Barriers: How to Travel the World with a Wheelchair*Wheelchair Travel Information*###### (Recorded March 17, 2023)

(* Transcript will post soon)

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

*What Every Parent Needs to Know***###### The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

How Families Can Ensure Their Child with Disabilities Has a Secure Financial FutureShow Notes:In this episode of the Water Prairie Chronicles, your host, Tonya Wollum, speaks with financial planner Amit Chawla about the importance of financial planning for special needs children. Drawing on his personal experience of having a son with a disability, Chawla highlights the need for proactive planning to ensure that parents are adequately prepared for their child’s future financial needs. He provides valuable information on government benefits such as Supplemental Security Income (SSI) and Medicaid, as well as misconceptions about financial planning for individuals with disabilities. Chawla emphasizes the importance of seeking guidance and resources from government agencies and nonprofit organizations, and planning for the worst-case scenario. He also suggests finding other ways to fund their child’s needs, such as utilizing resources like nonprofit organizations or community support. Overall, Chawla’s interview underscores the crucial role financial planning plays in ensuring that families with special needs individuals can provide the best care and support possible.

Connect with Amit:

Podcast: https://planningforspecialneeds.podbean.com
Facebook: https://www.facebook.com/MySpecialFP
Instagram: https://www.instagram.com/MySpecialFP/
LinkedIn: https://www.linkedin.com/company/my-special-financial-planning/
YouTube Channel: https://www.youtube.com/@PlanningForSpecialNeeds

My Special Financial Planning is a Financial Planning service for the Special Needs community. Pro Bono if you are not earning over $100K/year individually or $125K/year as a family, and have savings of less than $250K.
Waiver programs: https://www.kidswaivers.org/, It provides details of all waiver programs (by state) for children with disabilities or medical needs. Some of these waivers consider family income and some don’t.

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

MOTHERS DAY BOOK BUNDLE GIVEAWAY!Grab your chance to win 2 signed books about Sofia Sanchez, a teen actress, model, and advocate for Down syndrome!

Go to https://waterprairie.com/giveaway for details!

Get a BONUS entry by answering some questions about this podcast episode: *https://forms.gle/9dEy4TxjGvjMybXk6*

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Meet Today’s Guest:

Amit Chawla is a Software Product Manager and founder of My Special Financial Planning, a financial planning company that focuses on special needs families. He and his wife, an Estate Planning Attorney, have two boys and reside in Lexington, Massachusetts. Their oldest son is 13 years old and has Autism, which led Amit to become a certified financial planner and chartered special needs consultant. Amit’s goal is to help families with special needs members plan for a better future. He volunteers for a couple of non-profit organizations to provide pro bono financial planning services, and he and his wife moderate a private Facebook group called Planning for Special Needs. Amit shares openly about his experience with raising a son on the severe side of the Autism spectrum and how it led him to become a passionate advocate for special needs financial planning.

Episode #59: Financial Planning for Special Needs Children*What Every Parent Needs to Know*###### (Recorded March 11, 2023)

In episode 59 of the Water Prairie Chronicles, financial planner Amit Chawla speaks with Tonya Wollum about the importance of financial planning for individuals with disabilities. Chawla shares his personal experience of having a son with a disability and realizing that financial planning is crucial for supporting his family in the long term.

Chawla notes that individuals with disabilities are entitled to free and fair education until age 22, and that there are various government benefits that can help cover costs. However, parents must be proactive in seeking guidance and resources from government agencies and nonprofit organizations. This is especially important for families who may face financial challenges in providing the support their child needs.

One of the government benefits discussed in the interview is Supplemental Security Income (SSI), which provides financial assistance to people with disabilities who have limited income and resources. Chawla explains that a child must be diagnosed with a disability to be eligible for SSI, and their income must be below a certain limit. Before a child turns 18, their parents’ income is deemed towards them, which can affect their eligibility for SSI. The interview also covers Medicaid, which is another government benefit that provides medical insurance to people with disabilities or low income. Chawla notes that many states have Medicaid waiver programs, which do not count parents’ income for their child to be eligible for Medicaid.

Chawla also addresses common misconceptions about financial planning for individuals with disabilities, such as the belief that having a lot of resources is sufficient for long-term financial security. He explains that even wealthy individuals cannot rely solely on their own resources and that there are many programs and resources available to support individuals with disabilities. He emphasizes the importance of seeking help and guidance and having an open heart and willingness to learn.

The interview also touches on educational purposes, and Amit notes that any funds put aside for a child’s education must be used for educational purposes. In addition, he suggests spending the money on the child’s needs to avoid any legal complications.

The conversation ends with a discussion on the challenges parents may face when securing financial support for their child. Chawla suggests working with a professional to determine how much money the child may need in the future, and planning for the worst-case scenario, assuming that the child may not receive any government benefits. For those who are not able to earn enough, Chawla suggests finding other ways to fund their child’s needs, such as utilizing resources like nonprofit organizations or community support.

Overall, the interview with Amit Chawla highlights the importance of financial planning for families with special needs individuals. Chawla provides valuable information on government benefits such as SSI and Medicaid, and suggests proactive planning to ensure that parents are adequately prepared for their child’s future financial needs.

Families who have a special needs child must plan for the future early on. The journey of caring for someone with special needs is often lifelong, and financial planning plays a crucial role in ensuring that the child receives the best care and support possible. Even families with limited resources can benefit from seeking help and guidance from government agencies, nonprofit organizations, and qualified financial planners who specialize in special needs planning.

Amit Chawla’s personal experience with his son with a disability makes him an ideal resource for families who are starting their financial planning journey. His emphasis on proactive planning, seeking guidance, and finding other ways to fund their child’s needs underscores the importance of financial planning for individuals with disabilities.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

How Sofia Sanchez, a Model, Actor, and Author with Down Syndrome, is Breaking Barriers and Inspiring the World###### The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Show Notes:In this inspiring and heartwarming episode of the Water Prairie Chronicles podcast, Tonya interviews Jennifer Varanini Sanchez and her daughter, Sofia Sanchez. Sofia, who has Down Syndrome, is a child model, actress, and voiceover actor. Sofia and Jennifer share about their experience filming the Hunger Games movie, The Ballad of Songbirds and Snakes, and some of Sofia’s favorite memories of being on set. The conversation also touches on their experiences traveling to multiple countries and immersing themselves in the local cultures. Sofia’s achievements in modeling and acting have inspired and given hope to many parents of children with disabilities who believe that their children can achieve their dreams.

Jennifer and Sofia talk about how they began working with children’s book author Margaret O’Hare to write four children’s books that promote inclusion, acceptance, and love in families, regardless of what they look like. Jennifer and Sofia’s story is one of resilience, passion, and hard work. Their experiences in modeling, acting, traveling, and writing have shown that anything is possible with determination and support. The episode is a must-listen for anyone looking for inspiration and motivation to pursue their dreams, no matter their circumstances.

Connect with Jennifer and Sofia:

Instagram:
- Jennifer: @thesanchezsix
- Sofia: @the.sofia.sanchez
Sofia’s website: www.Sofia-Sanchez.com

Purchase Sofia’s Books: ( As an Amazon Associate I may earn a commission on sales made by using these links.)*

You Are Loved
You Are Enough
Ride the Wave Love Sofia and Haole the Surf Dog
BeYOUtiful Love Sofia

Resources for Down Syndrome Families:

Global Down Syndrome Foundation – https://www.globaldownsyndrome.org/
National Down Syndrome Society – http://www.ndss.org/
National Down Syndrome Congress – https://www.ndsccenter.org/
Gigi’s Playhouse – https://gigisplayhouse.org/
Down Syndrome Diagnosis Network – https://www.dsdiagnosisnetwork.org/

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

MOTHERS DAY BOOK BUNDLE GIVEAWAY!Grab your chance to win 2 signed books about Sofia Sanchez, a teen actress, model, and advocate for Down syndrome!

Go to https://waterprairie.com/giveaway for details!

Get a BONUS entry by answering some questions about this podcast episode: https://forms.gle/Lwo6B8cH1Drw8dyR8

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Meet Today’s Guests:

Jennifer Varanini Sanchez is the mother of 4 busy teenage children, two of whom have Down syndrome. She’s a makeup lover and a Down syndrome and adoption advocate.

Sofia Sanchez is a 14-year-old actress, model, and Down syndrome advocate of Ukrainian-American descent. She made her acting debut in the television series, Switched at Birth, and has since appeared in a variety of productions, including the films For Paloma and The Ballad of Songbirds and Snakes. She has also been featured in print ads and commercials for prominent brands like Old Navy and Target. Sofia’s inspiring adoption story has been the subject of several Scholastic picture books, including You Are Enough and You Are Loved.

Episode #58: From Hunger Games to Children’s Books: The Unstoppable Sofia Sanchez!**How Sofia Sanchez, a Model, Actor, and Author with Down Syndrome, is Breaking Barriers and Inspiring the World**###### (Recorded March 27, 2023)

Voice of Tonya Wollum, the host of the Water Prairie Chronicles: In this episode of The Water Prairie Chronicles, we continue our conversation from episode 57 and chat about Sofia Sanchez’s role in the Hunger Games movie, the Ballad of Songbirds and Snakes, a new book about Sofia and other exciting projects this teen model, actress, and voiceover artist has going on.

Join me for this inspiring conversation. With Jennifer Varanini Sanchez and her daughter Sofia, as they share their journey of breaking down barriers and achieving success in the entertainment industry, get ready to be inspired by Sofia’s confidence and professionalism and learn how she is making a difference as she proves to the world that different is beautiful.

Tonya: So I wanna, I wanna talk to both of you a little bit about the new Hunger Games movie now that’s coming out in November, if I remember correctly.

Jennifer: Yes. You wanna tell when it’s coming out?

Sofia: It’s coming out November 17th

Tonya: November 17th,

Jennifer: 2023.

Sofia: 2023

Tonya: Wow. That’s coming up pretty soon. Are you getting excited?

Sofia: I’m so excited.

Jennifer: Yes. We don’t know what we, you know, we won’t have seen the movie until you do, so it’s very exciting.

Tonya: Right. And when we first connected, it was before you had just gotten the role, I think, or it was maybe before you got the role back in the summertime and or before you announced it publicly. You, you, you probably already knew at that point. And then you were gone for what, three or four months, I believe?

Jennifer: Yeah,

Sofia: Four months.

Jennifer: Four months.

Sofia: Yep.

Tonya: So, um, so let’s back up a little bit. Um, Jennifer, when did she start modeling?

Jennifer: So, Sofia has been modeling since the day she entered our family. She is a very photogenic little girl. Um, so, but her first job was, I wanna say when she was probably four. Um, and. It was a job that was like kind of a social media campaign and we realized how photogenic she was.

So an agent was like, we think she has like a career in this.

Tonya: Wow.

Jennifer: So we got an agent that specializes in, um, people with disabilities. So a diversity talent agency, which is down in LA called KMR Diversity, which still exists. And she’s still with, um, and that had really catapulted her career because they were known for finding, you know, filling roles in campaigns for major companies that were looking to be more inclusive in their advertising.

So, She quickly became Target’s little darling who was doing, she did a ton of Target commercials and she, she’s posing right now, I think. And, um, then we went on to, yeah, she’s been pretty much, we’ve checked boxes off all the major retailers. You know, Old Navy, Athleta, Abercrombie, Gap, American Girl, Pottery Barn here.

What, like, the list goes on and on. Um, But it wasn’t until she was, I think, gosh, I always get this age wrong and I should know this, but I wanna say early elementary, she was cast in a TV show called Switch At Birth. Okay. Which, um, was a very popular ABC Family TV show that featured characters that were deaf.

Um, and there was a lot of sign language on this show, and she was cast in a really important role. Um, and that when she did that, you know, it was a different kind of thing. It’s not taking pictures, it’s actually doing what the director wants you to do and having lines at a very young age, and she was excellent.

And the director said he’d never seen anyone who was so natural. Um, and that, you know, even typically developing children had difficulty with the things that they a, that they asked her to do that she didn’t have trouble with. So we quickly learned that this was something she was maybe born to do, um, and has a special talent for it.

So, as a mom, when you know that your child has a special talent, you try and find more opportunities for them to blossom. So that’s what I, and she enjoys it and has so much fun.

Tonya: So do the two of you work together to help her get ready for her roles or does she do it all by herself now?

Jennifer: Well, in the beginning, well I, obviously I’m her mom and I coach her and help her.

Um, and, but for the Hunger Games movie, it was the first time she knew her lines. Quickly and easily cuz she reads and she’s able to understand scripts, um,

Sofia: I read scripts.

Jennifer: She loves to read scripts, she loves reading plays. So that was easy. She understood her lines and it was the first time I decided she’s 13.

This is a big movie. I’m gonna take a step back and let her do this on her own and just, See what happens. And it was very hard as a mom to let go and to like let go and trust that it’s all gonna work out. So I sat with the rest of the moms. There were four kids on this, on the, there’s only four children that are under 18 in the movie.

And so I sat with the rest of the moms of those kids and did what any typical mom would do and just look at a screen where you can’t hear anything. You don’t know what is happening out there. You could see a picture and. She would, she would nail it so quickly she’d be back from her role. You know her

Tonya: Wow.

Jennifer: Little part. And I’d be like, that’s it. She got it. And they’re like, yeah, she got it. So, um, she, she’s an expert at this stuff. She’s a pro.

Tonya: That that is, that is a gift. You’re right.

Jennifer: No fear of people, cameras, situations. Yeah.

Tonya: So Sofia, can you tell us a little bit about the movie? I don’t know what you’re allowed to say or not say, but, um, but what can you tell us about the movie itself and the character that you played?

Sofia: I played Wovey, and it was the Ballad of Songbirds and Snakes. I was so excited to this huge movie for this community I’m doing and

Jennifer: tell her what district Wovey is in and what are you as Wovey, what is Wovey?

Sofia: She’s is in District 8,

Jennifer: she’s in District 8 and she’s a tribute

Tonya: She’s a tribute, and I know Tributes,

Jennifer: you’re one of the tributes, so that’s what she can say is she’s one of 24 tributes.

District 8. If for those Hunger Games fans’ know what we’re talking about. She’s from District 8 and she is, yeah, her name is Wovey. Can you tell them what’s in the district? What’s District 8 known for?

Sofia: Um,

Jennifer: textiles and fabric, which is why her name is Wovey.

Tonya: Okay.

Jennifer: Woven,

Tonya: right.

Jennifer: Yeah.

Tonya: Right. Interesting. Okay, so I’m, I, I’ve seen some of the movies, not all of them, but, um, my daughter loves them and so we’ve watched some with her and um, so I think we’re gonna watch it together whenever it comes out. So I’m looking forward to it as well.

Jennifer: And the books are really good too. Like if you were like reading.

Sofia: Should I get the book?

Jennifer: Oh, it’s okay. No it’s okay. She was gonna say, can she show you? So it’s all the movies are based off the book. So that’s fun too because Sofia was able to read the story as well as we just started watching the movies ourselves. Cuz this, this movie, the Ballad of Songbirds and Snakes, it’s a prequel, so you don’t necessarily have to be familiar with the Hunger Games to watch it, which is nice.

So it’s like the beginning of the story.

Tonya: Sofia, um, what’s your favorite memory of filming the movie?

Sofia: When I was filming, I was, Excited to do it and I was not nervous, but my favorite part of the movie was meeting the people.

Jennifer: Yeah. Who did you meet? Tell her the people you met.

Sofia: I met Rachel Zegler.

Jennifer: Uhhuh. Who else?

Sofia: And I met Peter Dinklage,

Jennifer: Peter Dinklage,

Sofia: and Viola Davis.

Jennifer: And who was your director that you love?

Sofia: The director, I loved Francis.

Jennifer: Francis Lawrence. So, I think what she, what she talked about and what she enjoyed the most, I, what I saw as a mom was meeting so many different people from around the globe really. And she got to know them pretty well because we were together in foreign country for so long,

Sofia: and also I met Kaitlyn Akinpelumi.

Jennifer: Uhhuh. And you also met Hunter Schafer.

Sofia: Oh yeah.

Jennifer: And yeah, just like lots of, and then your favorite thing was meeting your, the other kids.

Sofia: Oh yeah.

Jennifer: She got to be kind of like really close friends.

Sofia: I got to meet Luna, Cooper, and Knox.

Jennifer: Loved the kids. Yes.

Tonya: Did the four of you spend a lot of time together?

Sofia: Yes, we did.

Tonya: So I’m, I’m sure you’re staying in touch afterwards now.

Jennifer: Yes. Very close friends. And the other fun thing was being in a foreign country, what did you get to try and taste all the time?

Sofia: All the different kinds of food.

Jennifer: All the different kinds of food. Yes.

That’s always a highlight for Sofia is the food.

Sofia: Yes.

Tonya: Now I was, I was following your adventures a little bit while you were over there cuz you were posting on social media and it looked like you were traveling in a lot of different countries. So, Sofia, what was it like traveling to so many different countries?

Sofia: I like traveling and it makes me happy when I travel with her. Because we went to to the countries, but we went to .

Jennifer: We went to so many countries we can’t give it away cuz that’s one of our truths. But um, we went to so many countries and learned culture and again, food and different

Sofia: We also got to see like German

Jennifer: Oh yeah we got to hear different languages. That’s very true. Yes. She said she got to hear German and French. And

Sofia: Oh and Portuguese

Jennifer: oh yeah.

Sofia: And Ukrainian.

Jennifer: Mm-hmm. Some Ukrainian, some Polish. Mm-hmm. We went to London and saw lots of plays, so we just took advantage. Wanna tell about that?

Sofia: Oh yeah, so at first I saw,

Jennifer: Oh she’s talking about the theater. We went to the theater district in London and saw a lot of plays because, you know, it’s such a big culture in Europe to. To go to live theater instead of the movies. So we took advantage of that.

Sofia: And the next one was Life of Pi was also, but Puppet. Mm-hmm. And the other one was Matilda.

Jennifer: We saw Matilda.

Sofia: I love Matilda. We also saw Mama Mia.

Jennifer: Uhhuh.

Sofia: It was also my favorite.

Jennifer: And then Six.

Sofia: And then Six. There you go.

Tonya: Wow.

Sofia: And my was

exactly,

Jennifer: And then in Hungary, we went to the baths in Hungary.

Sofia: Oh yes.

Jennifer: And we went to a ballet in. Um,

Sofia: It was called Swan Lake.

Jennifer: In the Czech Republic, we went to Swan Lake.

Sofia: Yes.

Jennifer: So, yeah, we just did, we immersed ourself in culture.

Sofia: We had fun.

Tonya: Nice, nice. I mean, it was a long time to be away from home, but it sounds like you were making the most of being there.

Sofia: Yes.

Jennifer: And we were so fortunate to have the family come and visit a couple of times. Um, and then we got to see family and friends even came all the way to visit. So, Um, and you know, with the, with the way the world works with FaceTime and stuff, you never feel that far away. You know, you can connect real easily daily.

So we did that. So we figured this is, this is a once in a lifetime thing. Let’s just enjoy it. And you, you know, utilize, this is an opportunity for world. I called it World School. You know, so, yeah.

Tonya: So, Sofia, how did you face some of the challenges that you had during filming? Or did you have any challenges, and if so, how did you overcome them?

Sofia: Well,

Jennifer: was anything hard for you or was it all easy?

Sofia: There was one thing that is hard for me, I cannot see in the dark. It was like, it was,

Jennifer: it was a scene. It was dark. And what, how did you conquer that? How did you face her fear?

Sofia: I faced my fears. I took a deep breath, and I let it go away.

Jennifer: She took a deep breath and just

Sofia: let it go.

Jennifer: Let her fear go and

Sofia: And I did it.

Jennifer: Yep. Did it.

Tonya: That’s good advice for anyone going through something that they’re afraid of. Sofia, how did you balance your filming and keeping up with your schoolwork for all those months?

Sofia: Well, it was.

Jennifer: You had a teacher on set,

I had a

Sofia: teacher on set, and

Jennifer: in your breaks. What did you do?

Sofia: Breaks… reading is one of my favorite things to do like on breaks when I’m on set or not on set because

Jennifer: the teacher would come and make sure, yeah, he would come. So part of being on set when you’re a child, that’s mandated by law, I think, to have a, a teacher on set. So she didn’t miss any school. Um,

Sofia: I couldn’t miss it.

Jennifer: So the kids would all get together and do their homework or, you know, work on certain things. But again, we used it as an opportunity to. Almost like a homeschool, but in a different country. And so we would learn all we could about each country. And um, so yeah, I think she got a better education in those couple of months than she would’ve gotten in the class, the classroom, you know? So we didn’t miss,

Steve: probably so.

Jennifer: Yeah. And the minute we got back, she went immediately into her regular school again and didn’t, again, didn’t miss a beat.

Sofia: Yep.

Jennifer: She was so happy to see everyone.

Sofia: I was happy.

Tonya: Um, Sofia, what are some of your goals for acting in the future?

Sofia: I want to do more movies and do more modeling and do more acting. Cause what I really want is to do modeling and acting myself.

Jennifer: Do you prefer movies or tv?

Sofia: I want to do movies, because most of my favorite things do is act.

Jennifer: Mm-hmm. And maybe musicals.

Sofia: And I love doing musicals too. Different … those two makes me happy. Cause my goals are guess happy.

Jennifer: And you’ve got some books too, right?

Sofia: Yeah, I’ve got some books.

Jennifer: That’s another thing she does is she, we help write some books. Right?

Sofia: Yeah.

Jennifer: Based on your life, so keep living your life.

Tonya: With the movie coming out and having Sofia representing the Down community, what’s your hope that the movie. How do you, how do you hope that it’ll impact audiences?

Jennifer: What’s really cool about this movie and Sofia being in it, is that the role of Wovey that she plays is not necessarily a character with a disability.

So in the book, it’s that there’s no disability on this particular child. So the fact that the casting agent decided to cast Sofia, I think is kind of groundbreaking because they cast her and there’s no mention of her disability. She’s not, the disability is not the focus. She is an actress playing the part of Wovey and she just happens to have Down syndrome.

So I think it’s gonna be mindblowing for a lot of the audience that’s not expecting it to see that. And also just see, again, she’s capable, she, she’s a child just like everyone else in this movie are, you know, cause in the game, So in the mo, in the Hunger Games, it’s basically children are put into this game scenario and why not have a child with a disability that gets called to be in this game?

So it’s kind of like equal opportunity. Um, and so I think it’s just gonna be really cool because it’s not like in your face, it’s very subtle. And it’s very implied and I think that that’s got a lot of power in it.

Tonya: I’m gonna skip ahead now to talk about the book some, but before we talk about that, and I, and I know you’re having trouble hearing, but there’s something I wanna play for Sofia.

I had the opportunity to visit the local Gigi’s Playhouse in my town, and they just moved to a new facility, so, They were giving me a tour of the facility and we talked a lot about those early diagnoses and things like that. But whenever I left they were about to have a speech class come in with teens and adults and they wanted to share something with Sofia.

So Sofia, they heard about the movie coming out. They knew that your book, You Are Loved had just come out. And I’m gonna play a message now. I’m gonna share the screen so you can see it. But, um, But this is what they sent to you.

Gigi’s Playhouse Raleigh: Congratulations from Gigi’s Playhouse Raleigh. Woo.

Jennifer: Aw, that’s so sweet.

Sofia: So sweet.

Tonya: So I told them I was gonna play that for you so that they could, um, could see your reaction to it.

And they’re gonna be watching this, so they’ll be able to see that your message to them as well. So, like I said, my surprises were little, but

Jennifer: Oh, I love your surprises. They’re perfect.

Sofia: I still love them.

Jennifer: Yep. We love little surprises and that was wonderful. We love Gigi’s Playhouse.

Sofia: Yes, we do.

Tonya: So I wanna talk about the book now.

Um, the You the You Are Loved book. Jennifer, we’re gonna, we talked a little bit earlier about how, we’ve already answered the question of how Sofia came to be part of your family, cuz you talked about the adoption, um, in your introduction. But how did the author Margaret O’Hare first find out about Sofia?

Jennifer: So Margaret is a, a PK kindergarten teacher in, um, our state county here in, in California.

And she saw Sofia, like most people do on social media, and saw that she was not too far from her geographically and reached out to us and said, gosh, I’d love to meet Sofia. She sounds lovely. Um, and we met her and she was wonderful and. I have always wanted to share her story in, um, in a book format, but like, just, I don’t have the time.

I, like, I, I did a lot of blogging when the, when the kids were little and that was my writing and, but I just didn’t know the process to writing a children’s book. And she did. She was a, she’s a children’s book author, so she and I collaborated and decided let’s do this together. And, um, she quickly, um, We basically, I, she’s like, do you want me to help you?

And I’m like, of course I do. I would love your help. And so she got, she got, she spent some time with Sofia, got to really know her. And then I would sit with her for many, you know, many lunches and breakfast where I would just talk about her experience. And between the two of us and Sofia, we came together and wrote, um, we self-published two books before we got a deal with Scholastic.

So we have Beautiful. You wanna tell them the two books?

Sofia: We have BeYOUtiful Love, Sofia,

Jennifer: and then we have

Sofia: We have Ride the Wave Love Sofia and Haole the Surf Dog.

Jennifer: Yeah. So we have, Ride the Wave Love Sofia and Haole, the Surf Dog, which is about surfing. With help. And then, yep. And then we had the BeYOUtiful Love Sofia, which is kind of an autobiographical. We did those ourselves, the two of us.

Um, and then we just happened to get a meeting with Scholastic that Meg had met the VP at coffee down in Southern California. It’s weird how things come together. I think it was all meant to be. This VP, Deborah Dorfman had seen Sofia as well, said I’d love to meet her. We went to New York City. We sat down in the Scholastic office with Clifford, the Big Red Dog all over the place.

And by the end of this one hour meeting, Sofia had charmed them and they’re like, we would love to do a book with you. So this book was an illustrated book and it was obviously the public, the publishing house is Scholastic and that that one’s called You Are Loved. Uh, I’m sorry. The first book is You Are Enough.

Um, a book about inclusion and it talks, you know, obviously about inclusion, which we’re so, um, so like, you know, it’s so much our mission is just inclusion, inclusion, inclusion, um, and acceptance and love of yourself, and then Scholastic, like that book was wonderful. Let’s do another one about Sofia’s adoption and talk about diverse families.

So You Are Loved as a book about families. And it talks about all the different kinds of families.

Sofia: Families fill me with love. So we can be together and work together so it can be loved again,

Jennifer: it doesn’t matter what your family looks like, as long as they love you

Sofia: because your family loves you, like you love your parents.

Jennifer: Mm-hmm.

Sofia: That way because your family is. Different is beautiful.

Jennifer: Different is beautiful, and your family can be different. And it’s still beautiful. So like Sofia introduces that she’s adopted and that’s how her family started. And then some families have are, you know, there’s a blended family. Some have grandparents that raise them, some um, you know, some have multi-generational families living under one roof.

You know, it just, and. Sometimes we look like our family and sometimes we don’t look like our family, but it just doesn’t matter. And so it’s a beautiful, inclusive family book.

Tonya: Um, Sofia, what age is the right age to read this book?

Jennifer: Four to eight.

Sofia: Four to eight.

Jennifer: That’s really meant for like.

Tonya: Okay.

Jennifer: I think, uh, I think anyone and everyone should read it, but it’s designed for ages four to eight.

Tonya: Those that are listening, Sofia has graciously signed two of those books. The You Are Enough and You Are Loved books for us, and if you’ll watch at the end of this segment, we’re gonna have a contest for you to be able to win those books. Sofia, thank you for signing those books for us. The books now you talked about you have You Are Enough and You Are Loved.

Are those two in a series? Is that how it’s running?

Jennifer: It’s kind of becoming a, um, a companion book to You Are Enough. So many of the characters that you meet and see in the first book are carried through in the second book, and you get to know their families a little bit better. Um, through pictures. The illustrations are quite lovely.

So what’s fun is you will have seen a lot of the characters in the first book they’ll reappear in the second book. Um, and that means, you know, we’ve got people that are wearing, you know, illustrations of people with hearing aids, illustrations with limb difference. Um, there’s, you know, depiction of people that are, um, blind.

Um, vi vitiligo, different sizes, shapes, colors, nationalities, religions. So it’s really lovely that, you know, we hope that everyone can kind of find themselves in the book.

Tonya: Are there any projects that are connected to the books? You, you have the deal with Scholastic as far as publishing the books. Is there anything else about the books or is there anything you can tell us?

Jennifer: Yeah, something exciting. What’s happening with the books? Um, they’re turning it

Sofia: into a cartoon.

Jennifer: Say it louder.

Sofia: Into a cartoon.

Jennifer: They’re turning it into the cartoon. What’s the cartoon called?

Tonya: That’s exciting. That’s exciting.

Jennifer: I know. Say it again,

Sofia: the Rocket Park.

Jennifer: It’s called Rocket Park.

Tonya: Do you know when that’s gonna start?

Jennifer: Yeah, so we don’t, I think that they are developing it right now and they’re shopping it around to different networks, so cross their fingers it gets picked up, but it would be the first cartoon that features a person with a disability as the lead. As the lead character. As the main character. So that would be Sofia and she, the premise is it’s based off the books, based off a little bit of her personality, but like just the spinoff of the books.

Tonya: Does that mean that Sofia will be doing the. The voice of the cartoon?

Jennifer: That would be the hope. Yes. We, they obviously cannot guarantee it because depending on what they need, if her voice needs to be younger or not, cause she’s 14, but you can tell ’em another project that you’re doing that you’re about to record.

Sofia: I’m doing a voice over on Nickelodeon.

Jennifer: Nickelodeon for a cartoon on Nickelodeon, so stay tuned.

Tonya: Wow.

Jennifer: And we’ll tell you the name of that as soon as we’re allowed. Right?

Sofia: Mm-hmm.

Jennifer: But you’re, you’re practicing cause she’s recording next week.

Tonya: Jennifer, what advice would you give a family that’s considering adopting a child with Down syndrome?

Jennifer: Oh gosh. I would say, um, if you have the hunch or even like a small inkling toward it, please, please, like, pursue that and, um, I highly recommend it. Um, obviously, you know, Just like with any child, it’s going, you know, your, your experience is gonna be unique. I can’t say that you’re going to adopt a child and it’s gonna be a child that’s like Sofia Sanchez, but I can say that you’ll be blessed with, you know, a child that is going to bring you the most incredible love.

And, um, I, yeah, I basically, if you have a hunch, please, please. Go forward with it. Say yes to that hunch and, and even if you can’t be the one that adopts, maybe get involved in helping organizations that help find families. So you can be an advocate for finding connecting families or maybe raising funds for families to be able to afford it.

But I will say it was not something I’d ever imagined doing and I had that hunch. And if I hadn’t to followed that hunch, we would not have Sofia in our life. So I always say like, Please listen to the little urges inside of you and, and, um, maybe it is something that will bless your family.

Tonya: And are there, is there a particular organization that you went through or is there a group that you would recommend people to get in touch with?

Jennifer: So there’s lots. Um, we ended up doing an international adoption just because that’s how it just organically happened for us. It wasn’t necessarily that I wasn’t, that I wanted to adopt out of the country. There just was a huge need. So there’s a very long wait list for adoptions of, of people with Down syndrome in the United States, which is a great thing to have a wait list of families wanting a child.

So, um, uh, at least a baby. I think the, the list for adopting a older child, there’s still a need in the United States, but um, overseas there are countries that have a lot of children in orphanages that are abandoned based solely on their disability. And so, uh, we used Reese’s Rainbow, which I think is still in operation.

It’s a nonprofit that helps connect families with children in need and helps with the fundraising. And then, um, but otherwise, yeah, there you can just get again, a Google search for adoption and Down syndrome, and you’ll find a lot of different organizations that might be more local to you.

Tonya: Now, we’ve talked about some projects for Sofia already.

Do either of you have any other projects coming up that you wanna tell us about before we finish up here?

Jennifer: Yes, we do.

Sofia: We do.

Jennifer: We’re leaving next week. Where are we going?

Sofia: We’re going to

Jennifer: what country?

Sofia: Iceland.

Jennifer: Iceland. We’re heading to Iceland Next week.

Sofia: Yes, we are.

Jennifer: And it’s an, it’s a project for a nonprofit called Just Like You.

And again, more info to come, but it’s gonna be a humanitarian project looking at the country of Iceland as the first country to tout that they have eradicated Down syndrome through prenatal diagnosis. So we are going to go to Iceland. And find a little girl with Down syndrome. Her name is Kolfinna. She’s around 10 years old.

And we’re gonna have the girls meet and we’re gonna film that and kind of create some content to in start a dialogue about what, why, why, why is this happening? And it’s more to come. But basically in a nutshell, Iceland is a rare, beautiful country and we feel that Down syndrome is a rare, beautiful human, human condition. So we want to kind of meld those things together and start the conversation and maybe. Possibly change the direction that this country’s decided to take.

Tonya: When will we be able to find out or how can we find out when that will be posted?

Jennifer: I, if you follow our accounts, we will be posting about it at length once we are able to, once we finish the project and the content is released, but hopefully we’re hoping that Discovery or National Geographic pick it up and do kind of a bigger story.

Um, and it’s, you know, we have a, uh, the nonprofit has a lot of plans for how they’ll use it and we’re not sure exactly which one will be released first, but I will definitely share and hopefully you’re gonna hear about it just because it’s gonna hit a bigger network. But yeah, Sofia was invited to go.

We’re very blessed. We’re going with another little girl with Down syndrome, that’s also a model in actress Mia Armstrong. And the two girls will go and meet this little girl Kolfinna in Iceland and. Kind of give her love and we’ll, we’re gonna do some photo shoots and some, um, video and some documentary style stuff, so we’ll see what happens.

Tonya: Oh, nice. I’m, I’m looking forward to that. And that actually leads us to my last question. How, how should our listeners get in touch with you? I know Instagram is one way. Um, sh what is your, what are the two of your Instagram accounts?

Sofia: It’s called the, the dot Sofia dot Sanchez.

Jennifer: So Sofia’s is @the.sofia.sanchez, like she said, and mine is @thesanchezsix all spelled out. But you have a website too?

Sofia: Yes.

Jennifer: What’s your website?

Sofia: www.sofia-sanchez.com.

Jennifer: Tell ’em how you spell your name because that’s often a mistake.

Sofia: S O F I A.

Jennifer: So an F, not a PH.

Sofia: Not a PH,

Jennifer: yes. It’s always like that’s an F, not a PH.

Tonya: I’ll put those links in the show notes as well so that they can find you and those that are listening. If you haven’t found their accounts yet, I highly recommend that you follow them on Instagram because they post lots of information. Lots of good information. So for those that want to know more about Down syndrome, but also to find out what they’re up to.

Cuz this family travels a lot and does a lot of of interesting things. So, um, I’d love to talk to you more, but I know you have a, um, a deadline that you have to hit. So thank you both for joining me today and for telling us more about all these different projects that you’ve been involved with and helping us to understand more about the Down syndrome community.

Jennifer: Thank you so much for having us.

Sofia: Thank you for having us.

Voice of Tonya Wollum, the host of the Water Prairie Chronicles: IThank you for tuning into this inspiring interview with Jennifer and Sofia who have shared their incredible journey in modeling, acting, and writing children’s books. Sofia’s talent and determination have broken down barriers and opened doors for others with disabilities, proving that with hard work and determination, anyone can achieve their dreams.

Their children’s books promote inclusion, self-acceptance and love, and we encourage you to check them out in the show notes. Thank you Jennifer and Sofia for sharing your story with us today. And thank you Gigi’s Playhouse, Raleigh for your encouraging message to Sofia.

Voice of Tonya Wollum, the host of the Water Prairie Chronicles: IDon’t miss out on our special Mother’s Day book bundle giveaway.

Win two signed books by Sofia Sanchez. And celebrate diversity and inclusion with You Are Enough and You Are Loved. Head to https://waterprairie.com/giveaway to enter now. Good luck.

Steve: This podcast is made possible by support from our listeners. If you wanna help offset the cost of producing the Water Prairie Chronicles, become a supporter at buy me a https://coffee.com/waterprairie.

Voice of Tonya Wollum, the host of the Water Prairie Chronicles: IYou’ve been listening to The Water Prairie Chronicles, a podcast created to encourage and support parents of special needs children. If you found value in this episode, hit the like button and subscribe so you don’t miss future episodes of the podcast. I’m glad you were able to join us today, and I hope to see you back next week for another episode of The Water Prairie Chronicles.

Ride the Wave Love Sofia and Haole the Surf Dog (1)

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

Resources and Support for Families of Children with Down Syndrome###### The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Show Notes:What if you were told that Down syndrome is not something to fear, but rather something to celebrate? In this inspiring episode of the Water Prairie Chronicles podcast, host Tonya Wollum welcomes Jennifer Varanini Sanchez and her daughter Sofia Sanchez, who reminds the world that Down syndrome is not scary.

Jennifer and her husband have three sons, the youngest of whom also has Down syndrome. The family adopted Sofia when she was under two years old from an orphanage in Ukraine. Jennifer has since become a Down syndrome and adoption advocate. In this episode, Jennifer shares their experiences with early intervention services, individualized education programs, and inclusive education. Jennifer also provides recommendations for new parents of children with Down syndrome and shares valuable resources for families.

Tune in to learn how Sofia is breaking down stereotypes and thriving as an eighth grader who attends school, plays sports, and is involved in a community theater production. Get ready to be inspired and uplifted by this heartwarming interview!

Connect with Jennifer and Sofia:

Instagram:
- Jennifer: @thesanchezsix
- Sofia: @the.sofia.sanchez
Sofia’s website: www.Sofia-Sanchez.com

Purchase Sofia’s Books: ( As an Amazon Associate I may earn a commission on sales made by using these links.)*

You Are Loved
You Are Enough

Resources Mentioned:

Global Down Syndrome Foundation – https://www.globaldownsyndrome.org/
National Down Syndrome Society – http://www.ndss.org/
National Down Syndrome Congress – https://www.ndsccenter.org/
Gigi’s Playhouse – https://gigisplayhouse.org/
Down Syndrome Diagnosis Network – https://www.dsdiagnosisnetwork.org/

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

MOTHERS DAY BOOK BUNDLE GIVEAWAY!Grab your chance to win 2 signed books about Sofia Sanchez, a teen actress, model, and advocate for Down syndrome!

Go to https://waterprairie.com/giveaway for details!

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Meet Today’s Guests:

Jennifer Varanini Sanchez is the mother of 4 busy teenage children, two of whom have Down syndrome. She’s a makeup lover and a Down syndrome and adoption advocate.

Episode #57: Beyond the Diagnosis: The Realities and Myths of Down SyndromeResources and Support for Families of Children with Down Syndrome###### (Recorded March 27, 2023)

Voice of Tonya Wollum, the host of the Water Prairie Chronicles: What if you were told that Down syndrome is not something to fear, but rather something to celebrate? In this inspiring episode of the Water Prairie Chronicles podcast, we welcome Jennifer Varanini Sanchez and her daughter Sofia Sanchez, who reminds the world that Down syndrome is not scary.

This is part 1 of an interview where Jennifer and Sofia share their experiences with early intervention services, individualized education programs, and inclusive education. Jennifer also provides recommendations for new parents of children with Down syndrome and shares valuable resources for families. In the next episode, they will discuss how Sofia is breaking down stereotypes as an actress who will appear in the new Hunger Games movie coming out this Fall and has other exciting projects. Get ready to be inspired and uplifted by this heartwarming interview!

Tonya: I have two very special guests with me that I have been looking forward to meeting myself and introducing you to for quite a while. We have Jennifer Varanini Sanchez. She’s the wife of Hector Sanchez. She’s the mother of four teenagers, I believe.

Do you have anyone older than teen at this point?

Jennifer: Nope, Nope.

Tonya: So four teenagers.

Jennifer: Four teenagers.

Tonya: She’s a makeup lover and, um, she’s a Down syndrome and adoption advocate. And the last part of her description is why I wanted to talk to her so much.

With her today we have her daughter Sofia Sanchez. Sofia is a Ukrainian American actress, a model, voiceover artist, an influencer who is reminding the world that Down syndrome’s not scary. And Sofia has done an awful lot in just a short time of her life. And I’m very excited to, to introduce you to both of them.

Jennifer and Sofia, welcome to Water Prairie.

Jennifer: Thank you. Thank you. Thank you so much for having us.

Sofia: Yes, thank you.

Tonya: Is there anything you’d like to share about yourselves before we get into our interview?

Jennifer: You wanna say or do you want me to start? Oh, well, she covered me pretty well. You wanna tell who you are?

Sofia: Okay. I’m Sofia Sanchez. Daughter to her. I was born in Ukraine and when I came here to this American family, I was given to my mom and she adopted me from Ukraine. And I was like so honored to be in this family, in this new house and my new life is finally here.

Jennifer: Your new life is finally here. So what she’s talking about is, yes, we adopted Sofia when she was just under two years old from an orphanage in Ukraine, and she completed our family. So I have three, um, biological boys and we just didn’t feel like our family was complete until we added this sweet girl to it. And um, yeah, it’s been a wild, fun ride.

Tonya: Excellent. Excellent. Well, if you, um, have been watching the, the podcast or listening to it, then our listeners will know that we’ve been playing a game this season called Two Truths and a Lie, and I’ve asked Jennifer and Sofia to prepare some facts about themselves to share with you.

And, um, so I’m gonna start with Jennifer, if you will, share three facts about yourself with one of them not being true. Then we’re going to let our listeners go onto social media and see if they can guess which one is tr, which of the two are true and which one is the lie. So what would you like to share about yourself?

Jennifer: Um, let’s see. I was a cheerleader in high school. Um, I have been on a game show and I have, um, let’s see. I’ve flown on a helicopter with a famous person.

Tonya: Wow. Hmm. All right. I’m gonna have to think about those a little bit. So, Sofia, would you like to No, we, we, we aren’t gonna tell yet what the answer is on these.

So, Sofia, would you like to share three things about yourself? One of them not being true, but the other being true? The other two. So something

Jennifer: (To Sofia, “One has to be a lie. This is a little confusing, but you say two things that are true about you, and one that’s a lie, but pretend like it’s true.”)

Sofia: So I think the TV shows, and

Jennifer: That’s one fact you’ve been on a TV show. What’s another fact?

Sofia: Okay. I was doing a movie.

Jennifer: She’s been on a movie and, and then

Sofia: I’ve gone to 13 countries.

Tonya: She’s visited 13 countries. Okay. All right. So, so we have, you’ve been on a TV show. You’ve been on a movie, and you’ve been to 13 countries. All right, so if you’re listening, it’s your turn to go guess now, but come back and finish watching the interview as well.

And a week after we post this, we’ll post the answers to that. So Jennifer, I have some questions I’m gonna ask you about parenting children with Down syndrome. First of all, you have more than one child with Down syndrome, is that correct? Yes. I have two children with Down syndrome. So you are an expert on this topic for me in looking at the younger.

Jennifer: Yes. Yes. I feel like I’m very well versed in raising children with Down syndrome.

Tonya: So did either of your children need special medical care when they were younger?

Jennifer: Um, neither needed medical care in terms of like heart surgery or anything like that. We were really blessed with healthy, um, hearts and. Um, bodies, um, the only medical things we went through with both, um, were multiple ear tube surgeries and obviously tonsils and adenoids out for, to help with those chronic ear infections.

But that’s really all we’ve had in terms of medical issues. So we feel very blessed in that respect cause it is very common to have medical situations in addition to the extra chromosome.

Tonya: Are the ear tubes very common?

Jennifer: Very common. Yep. Very, very common. Um, heart conditions are common. Uh, gastrointestinal issues are kind of common.

Um, I, oh, we do have, you know, Joaquin uses glasses, so vision issues. Um, he had us for business. I’m just remembering he had a screw. Which is the crossing of the eyes. And so we had, um, surgery to correct that when he was young and it was very successful. So he use his glasses and, and was able to, to help straighten his eyes.

Tonya: So with early intervention services, I know with, with my children, one did need early intervention, the other did not. Um, with either of your children, did they require early intervention services before they were in preschool?

Jennifer: Yes. Both of my kids, we utilized early intervention the moment that we could.

Um, so obviously Sofia, we adopted Sofia, so we weren’t able to access that until she was close to two years old, just because of the fact that we had adopted her at a later age. So she missed out on two years of early intervention. Joaquin, my son, obviously the moment we got his diagnosis, we were calling our regional center and getting those services started.

Things that we did were music therapy, water therapy, um, Physical therapy, speech therapy, which was oral motor in the beginning, and then speech a little later on. We pretty much did anything and everything we could get our hands on. Um, and that was offered to us. We even did like social play therapy groups, um, with babies in, you know, like those Mommy and me type classes. So we loved it. It was wonderful. Early intervention was just a wonderful time in our lives.

Tonya: Your kids are a little bit younger than mine are. We had the. The OT and the um, the playgroups and things like that. But music therapy was never an offer for us, and I wish it had been. I think it’d be a great, a great addition to what, what we had seen with the kids.

Jennifer: Yeah. I feel like, uh, music therapy, if I had to pick just one, it would probably be that one because it really covers everything. Um, right. With the medium of music you. So I really loved it. We were blessed to get that when they were ready for preschool,

Tonya: then I’m assuming that they transitioned into a preschool or did you keep them home? What did you do during those years?

Jennifer: We decided to do a blended program. So, um, at three we transitioned to the special, um, special day class preschool program for two days a week, um, for a couple of hours a day, as well as the opposite days. We were able to dually enroll them in a typical preschool with support so they would get their therapies and the SCC preschool, you know, their speech, their ot, and.

Like some sup, real supported preschool programming. But then the other three days a week, they would be with their peers, their typical peers in a classic preschool program with an aide on hand to help if needed. So we loved that as well. It was the perfect. Blend of the two.

Tonya: Yeah, no, I ha I’ve not talked to anyone who, who did that.

Um, my daughter was in a preschool that was a blended preschool that was 50-50. Half of the students needed special help and the other were typically developing peers. And so my son attended as a typical peer in that program, and actually by default got the services that he needed. Because he wasn’t identified yet as needing those services.

But, um, but they both were in a, in that, so they were three to five days a week depending on, on their age at the time, cuz they were there from three to five as they moved into elementary school. Did they, um, did they, did they start out with an IEP right away? Um, or is it an IEP that they were on?

Jennifer: We had been in an IEP since age three.

So in California where we are. Um, the IEP started the moment we entered the school district at age three, and that IEP followed us through now. As we enter high school, we’re, we actually have an IEP tomorrow is transition to high school. So the moment we went into kindergarten, um, we had that IEP in place and we fought for an inclusive education.

Um, so we were able to successfully include them in general Ed for the majority of the day. Would just pull out for speech, OT, and some specialized academic instruction. But they were in the gen ed classroom with us. Both of them were, we were able to get a one-to-one para educator with them. So they had their own, each of them had their own. Um, you know, one-to-one aide support.

Tonya: Right, right. Nice. Nice. It’s, um, you know, our parents are all over the country that are listening, so each state will be different in what they can have, but I think it helps a lot to hear what other parents have had success in having or even to know what to ask for whenever you get to that, that step in your child’s education. So I appreciate you sharing that.

Jennifer: Absolutely. We are, yeah, we’re big on sharing all the, you know, the law and what, what the least restrictive environment is. And many schools will say, having an aid is more restrictive than not, and it’s actually not the case. The actual environment they’re in is the, um, is the environment not supports and services that are given to them.

So it’s good to remember. If your child needs that, it’s not necessarily more restrictive.

Tonya: I am still a novice when it comes to Down syndrome. I’m, I’ve had different connections through the years. I had the opportunity to, to have an interview last week and find out some basics. So that’ll be playing the week before this.

So those that are listening, if you haven’t listened to that one, go back and you can get a little more foundation listening to that interview too. But I’m, I’m sure that I’m guilty of some of the misconceptions that are out there, but what are some of the biggest ones that you’ve come across and how do you address those when you do hear a misconception about Down syndrome?

Jennifer: Oh, yes. So, um, one of the most common, I would say the general public is that people with Down syndrome are always happy. Um, and, uh, what I try to explain to people is, Children with Down syndrome, people with downstream have a full range of emotion. So they will be happy when they’re happy and they will be sad when they’re sad.

And um, if anyone has ever met a person with Down syndrome, yes, they tend to have a really live in the moment attitude, which can be construed as being happy. But I think it’s just, uh, the fact that they are able, most are able to just be in the here and now. Um, but every child and adult that I’ve met with Down syndrome has every kind of emotion imaginable.

So, um, and then another misconception is that there’s, it’s like a one size fits all that, that, you know, if you have Down syndrome, it’s gonna affect everyone the same way. And having two children with Down syndrome, I can tell you firsthand that they are completely unique. In their needs, their, uh, abilities, their strengths, their struggles.

Um, just like my typical boys are so unique, you know, I call it my neurotypical boys. So, um, it is not a one size fits all. Um, I kind of, it’s, I would say it’s similar to like the autism spectrum disorder. Like, it, it, there’s a spectrum and maybe speech is harder for some children and not hard for others.

Maybe walking and mobility is hard for one child and it was not an issue with another. So, um, it’s, it, I think it’s important for people to remember. Down syndrome is, you know, it’s Tri 21, which is three copies of the 21st chromosome, but all 46 of the other chromosomes are mom and dad. So they’re still gonna be very much like their parents.

Um, and how that extra chromosome is reflected is gonna be different depending on the child.

Tonya: So it’s a very, it’s a very good point.

Jennifer: Some children with Down syndrome are able to read and write. Um, you know, I know some that drive a car and, and then there’s some that will never speak, do not have the ability to hold a pencil.

Um, so it’s just, it’s, you can’t assume, basically the key is you. What I try to tell people, don’t make any assumptions, of, of, that you know what a child can or cannot do based solely on their diagnosis. Let them show you what they are capable of.

Tonya: Right. So, and that, that kind of leads into my next question. Do you have any, um, advice that you would give to parents of young children who have gotten a diagnosis of Down syndrome?

Jennifer: Um, yes. So I tell any new parent that has just had a baby, um, first and foremost, congratulations. You’re about to go on the what most wonderful journey you never knew you needed or wanted. Um, so congratulations. Second of all. Um, enjoy your baby for your baby. Do not overthink or start like going down the rabbit hole of “what ifs.”

Just purely enjoy your baby. Um, having four children, I can tell you my children with Down syndrome were the most precious, enjoyable babies I’ve ever experienced. So enjoy that because the time is so short. Um, and then I would say, treat them and be with them like you would be with any other child. Talk to them. Love on them.

Give them experiences, give them opportunities. Um, do the therapies. I do recommend doing those. Um, it can only help. Um, and just, uh, believe, you know, believe that your child has value, no matter. What they are capable of. Like that whole ableism issue. Like do not assign value to whether or not they crawl at age two or walk at age three.

Like just celebrate every small moment for what it is and. And let them come on their own timeline.

Tonya: Nice. I like that. Can you share any resources or organizations that provided support for you or that you know of even that may have come into being after you needed them, that other families might wanna look for in their community?

Jennifer: Oh, absolutely. There’s, we are so blessed in the Down syndrome community because you’re gonna find things on a local level and a regional level and a world level. So there’s, I’ll start globally, there’s the Global Down Syndrome Foundation. There’s the National Down Syndrome Society, there’s the National Down Syndrome Congress.

There is Gigi’s Playhouse. There is um, uh, gosh, there’s the Down Syndrome Diagnosis Network, which is kind of like a mom support group that you get kind of connected with the same age kids. There is, then you go on a more local level and you might find in your own, you know, district or region, more local chapters of these groups.

Or for example, in our neck of the woods, some moms have created their own support groups. So a Google search is gonna just give you a plethora of choices. And, um, I would say to again, a new mom, reach out when you’re ready. Some moms need time. Um, but they’ll always be there. Um, and all of these organizations have new parent package or welcome packets.

Um, many will get you connected with whatever you could possibly need or want. Um, there’s even one called Dear Mom, that’s more like supporting the mom and our journey as moms. Not so much like clinical support or like Down syndrome related. It’s more just like taking care of yourself because that’s another thing.

Special needs moms as we know, you and I, um, we give, give, give and it’s really important to take care of yourself. So, you know, there’s organizations that support the mom as well.

Tonya: Excellent, excellent. For those that, um, that are watching or listening in the notes for this, we’ll put as many of those links as we can, and we’ll also add them to our resource page on the website so that if you’re looking, you can at least get started with some of those links.

So, is Sofia nearby or did she scoot off?

Jennifer: Yes, here she is.

Tonya: So Sofia, are you ready for some questions?

Jennifer: (To Sofia, “Come on over.”)

Tonya: So I wanted to ask you a few, just getting to know you a little bit. So what grade are you in in school right now?

Sofia: I’m an eighth grader.

Tonya: Okay. So you’re an eighth grader, so you’re about to move on to high school.

Sofia: Yes.

Tonya: Do you attend a local school or do you go online or homeschool?

Sofia: I go in in person because school is just my favorite thing to go with now.

Tonya: Excellent. And so since you go in person, you have some options. Are you involved in any of the clubs or sports at your school?

Sofia: Yes. Uh, well, I play sports, at my school, but now there’s basketball, running soccer and basketball.

Tonya: You do all of those.

Sofia: Yeah.

Tonya: Wow. I’m, I’m impressed. So you’re in school, you’re doing all these sports, we know that you’re an actress and all. What do you do in your free time?

Sofia: I go to a community theater for Adams Family.

Tonya: So Is that a musical?

Sofia: It is. I sing and dance.

Tonya: Oh, fun.

Sofia: But also I like to be in pictures.

Jennifer: You do modeling.

Sofia: I do modeling and. I love doing modeling because I can try different outfits and get selfies and pose.

Tonya: And so I’ve, I’ve seen some of your pictures on your Instagram. Do you take those yourself or does your mom take ’em for you?

Sofia: My mom does take me, but I help her.

Tonya: Yeah. Well, it, it’s, it, it’s of you, so it makes sense to do that.

So I wanna, I wanna talk to both of you a little bit about the new Hungry Games movie. Now that’s coming out in November, if I remember correctly.

Jennifer: Yes. You wanna tell when it’s coming out?

Sofia: It’s coming out November 17th.

Tonya: November 17th,

Jennifer: 2023.

Tonya: Wow. That’s coming up pretty soon. Are you getting excited?

Sofia: I’m so excited.

Jennifer: Yes. We don’t know what we, you know, we won’t have seen the movie until you do, so it’s very exciting.

Tonya: Right. And when we first connected, it was before you had just gotten the role, I think, or it was maybe before you got the role back in the summertime and or before you announced it publicly. You, you, you probably already knew at that point.

And then you were gone for what, three or four months I believe.

Voice of Tonya Wollum: Thanks for tuning in to this week’s episode of the podcast. We hope you enjoyed hearing from Jennifer and Sofia, who reminded us that Down syndrome is not scary and should be celebrated.

In next week’s episode, we will continue our conversation with Sofia, who is not only breaking down stereotypes but also breaking into Hollywood as an actress with exciting projects such as the new Hunger Games movie coming out this Fall, and Jennifer will be sharing what her role is in Sofia’s professional career. Stay tuned for the second part of this inspiring interview where we will learn more about Sofia’s acting journey and other projects she is working on. Don’t miss out!

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Show Notes:In this episode, we take a tour of the new location for Gigi’s Playhouse Raleigh, a non-profit organization that provides support, resources, and programs for individuals with Down syndrome and their families. We speak with volunteers and staff to learn more about the impact Gigi’s Playhouse has on the Down syndrome community. Additionally, we sit down with Michelle and Matthew Schwab, advocates for Down syndrome, to discuss a range of topics related to raising a child with Down syndrome, including medical care, education, and social interactions. Join us for an informative and inspiring conversation about the beauty of Down syndrome and the importance of building a supportive community.

Connect with Matthew:

Website: https://www.matthewschwabspeaks.com/

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

MOTHERS DAY BOOK BUNDLE GIVEAWAY!Grab your chance to win 2 signed books about Sofia Sanchez, a teen actress, model, and advocate for Down syndrome!

Go to https://waterprairie.com/giveaway for details!

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Episode #56: Building a Supportive Community for Individuals with Down Syndrome###### (Recorded March 22, 2023)

Voice of Tonya Wollum, the host of the Water Prairie Chronicles: Welcome to today’s episode of the Water Prairie Chronicles! We have an exciting show for you today as we take a tour of the new location for Gigi’s Playhouse Raleigh and sit down with Michelle and Matthew Schwab to discuss Down syndrome. They’ll share their personal experiences and insights, and help us understand the unique challenges and joys of raising a child with Down syndrome.

From medical care to education to social interactions, we’ll cover a wide range of topics in our conversation. Michelle and Matthew have a wealth of knowledge and experience to share, and we’re honored to have them on our show.

Gigi’s Playhouse is a non-profit organization that provides support, resources, and programs for individuals with Down syndrome and their families. The new facility for Gigi’s Playhouse Raleigh is truly impressive, and we’re excited to take you on a tour to show you what they have to offer.

So sit back, relax, and join us for this informative and inspiring episode as we explore Gigi’s Playhouse Raleigh and learn from the Schwabs about the beauty of Down syndrome.

This is our first interview on the topic of Down syndrome, and we were able to sit down with Michelle and Matthew after our tour to ask a few questions and to help us understand it better. Out of respect for those that I am speaking with, I like to find out how we should refer to different disabilities and special needs. So I started out by asking what terminology I should use when I refer to someone with Down syndrome.

Tonya: I want our listeners to know, as they’re meeting friends in the community, what is the most respectful way to refer to someone with Down syndrome? Um, and I’ve seen it written different ways. It’s “Down” and not “Downs”. Is that correct?

Michelle: That’s correct.

Tonya: So, there’s no “s” on the “Down” that. And is the “D” is capitalized and “syndrome” is lowercase?

Matthew: Yes.

Michelle: Correct.

Tonya: And why is that?

Michelle: The only, it is in typical, if you are doing a, um, if it’s on a sign or something like that, like Down Syndrome Achievement Center.

Tonya: Right.

Michelle: They would all be the D title capitalized. But if you’re talking about it, cuz Down is the man’s name who discovered it.

Matthew: John Langdon Down. In like the 1800s.

Tonya: Oh, wow. I was wondering how, how, how long it had been an official diagnosis. So it’s been a long time.

Michelle: That’s right.

We continued the conversation by talking about some of the common characteristics of Down syndrome.

Matthew: Yes. Down Syndrome is a, the, um,

Michelle: the most common,

Matthew: the most common genetic disability,

Michelle: let’s say condition. The most common genetic condition.

Matthew: The most common genetic condition is one of the ones in the Intellectual Developmental Disabilities Spectrum of disabilities because it only mainly affects the mentality.

Michelle: There is always some kind of cognitive impairment. Right? What are some of the other, um, markers?

Matthew: So, ~~so~~ we have shorter statures, wider hands. And small ears.

Michelle: Mm-hmm.

Matthew: Almond shaped eyes.

Michelle: Mm-hmm.

Matthew: Heart defects for. Some or

Michelle: about 50%.

Matthew: About 50% of those with Down syndrome have have those. And there are three types of Down syndrome.

There’s mosaicism and translocation, which are the least common of the types, and there’s the most common one, which, which I have is trisomy 21. And that’s why March 21st is significant and October because of 3, 3/21. And, and Down syndrome-related companies, or not have any sessions, but celebrate that World Down Syndrome day in, in, in October

Michelle: So the, then the three, so probably 95% of people who are Down syndrome have Trisomy 21.

Tonya: Okay.

Michelle: It’s just a fluke. It just happens.

Tonya: And that’s the only one that I’ve heard of, so. So the first thing you mentioned,

Michelle: almost everybody,

Matthew: Mosaicism

Michelle: Mosaicism.

Tonya: Mosaicism.

Matthew: But for short it’s mosaic.

Tonya: Okay. And then what was the second one?

Matthew: Translocation. And those two are the least common of the types.

Michelle: They’re a couple of percentage. And, um, mo, so mosaic Down syndrome is when not all of your, um, genes have the extra chromosome. Could be any, could be 5% of them, 10% so can’t have any time during. So depending on when your, your cells are splitting, they wouldn’t all have it.

Tonya: Okay.

Michelle: It’s interesting because there are, I know I, I mean, I don’t know this know this, but I do know this, know this, that there are people walking around who have it, who don’t know, who’ve never been diagnosed. They have to be.

Tonya: Well, because you would have features would not be the same.

Michelle: That’s correct. Not what, that’s correct.

And we know with you and, um, their, you know, abilities typically, they have some different abilities. They’re, yeah. Maybe not as, You wouldn’t know, right. Sometimes true. Um, and then translocation, if I remember correctly, it is, it comes from a parent, it comes from, it’s inherited somehow.

Tonya: So there is a genetic factor.

Michelle: Yep. also. Very, very rare.

Tonya: Okay. And then, so tri,

Matthew: Trisomy 21,

Tonya: Trisomy 21, right?

Matthew: Yes.

Tonya: Okay. We’ll make sure. And Link this, so make sure that I print it right and

Michelle: it really is almost everybody.

Tonya: Okay. And that’s, that’s where it’s the 21st chromosome.

Michelle: Mm-hmm.

Tonya: Is that right?

Michelle: Mm-hmm. Which is what Extra copy,

Matthew: the third copy of, of chromosome 21. Because, and, and, and typ neurotypical people like my mom, they only have. Two copies of, of code, one

Michelle: of all of them,

Matthew: of, of all them. And then, and then there’s, um, and then there’s with Trisomy 21 Down syndrome, where, where the, the two copies of Trisomy 21 makes. Makes another copy.

Tonya: Okay.

Matthew: It’s a third. Oh,

Michelle: that’s the Lucky Few we have.

Tonya: And what, do you know what the estimated percentage of the population is?

Michelle: You know, I do know that somewhere

Matthew: I think Down syndrome is probably, if not one of the largest, min largest ones in the, in the disability realm.

Michelle: I know you can find that statistic. Cause I have seen it somewhere, not pretty recently and I can’t remember what it was. I, um, I don’t, the number’s probably not huge. Um, there’s 700. 1 out of 700 kids are born a year with Down Syndrome In the US And I would this to, there, there would be a whole lot more if people were not prenatally diagnosed.

Tonya: Right. Right.

Michelle: That’s

I asked Michelle what she could tell us about early testing during pregnancy and if a diagnosis happens at birth or sometime later when prenatal testing doesn’t indicate a child might have Down syndrome.

Tonya: Well, and that, and that was what I wanted to ask too. So diagnosis. I know from when I was pregnant, we were given the options for different testing and we opted not to, cuz to us that wasn’t an issue. Um, the risk to us was greater than,

Michelle: no,

Tonya: we were going to meet our child when we met our child.

Matthew: Yeah.

Tonya: But, um, but for those who don’t do the testing like us, um, are, is it obvious at birth or do doctors know what they’re looking for right away?

Michelle: In my experience I have, I’ve actually known a few, probably fewer than five people in the last 25 years who went home with their baby and had no idea until weeks, or sometimes, months later, but it’s pretty rare.

I mean, it’s pretty obvious. We didn’t know. He was my first, we didn’t know before he was born. We thought he was, let me tell this story cuz I was the one who was aware and cognizant you were, you know, a little floppy thing. Right. Um, but all it’s funny because all of the markers, the low tone, he, he was like a Raggedy Ann doll.

Tonya: Okay.

Michelle: Um, he, and we commented on his teeny tiny fingers with his teeny tiny ears and look at this little gap between his toes. And he was floppy like a Raggedy Ann doll, all markers. And I, here I am going, oh, look how cute this is.

Tonya: Right

Michelle: and then four hours later the doctor comes in and goes, you know, we think he has Down syndrome. So, and I, I had the AFP, you know, that original, the blood test or whatever it was,

Tonya: right

Michelle: and it was normal. But that happens all the time.

Tonya: And so ultrasound part

Michelle: didn’t show anything.

Tonya: No problem.

Michelle: If you look back at it now, knowing you could go, oh yeah, you know, maybe they. Called this one, but

Tonya: I, I think a lot of us as moms, we see things later. It’s like, well, we, the signs were there, but we didn’t know what we were looking at.

Michelle: Correct. And so we didn’t do any further testing. We, I have two other boys, and we were like, you know, it is what it is.

Tonya: Right.

Michelle: And clearly the testing isn’t necessarily right. ~~So we,~~

I’ve heard parents of children with Down syndrome refer to their children as the “Lucky Few” and wondered why the term is used. I found out as Matthew shared some statistics with me. Contrary to what I had been told when I was expecting my own children, Down syndrome doesn’t seem to be much more of a risk for older mothers than it is for younger mothers.

Matthew: I believe there’s a statistic that says like, like 51% is more probable of 51% of, of individuals with with Down syndrome are born to two parents under the age of 35. So it’s more probable. From that, that, that way. But aside from that,

Michelle: well, yes, it, it, you know, you always heard it’s old, old moms,

Tonya: right.

Michelle: Have the kids. But it’s really not true when you factor in that more women below that are younger women are having the babies. So it’s, that’s not, one of the factors anymore.

One of the challenges I’ve had in coming up with a slogan for the podcast has been whether to use the term disability or special needs, and each time I ask for input I get an equal number of responses in favor of both of them. The same question comes up when we ask about “person first” language or “disability first” language. Michelle commented on the topic, and I was glad she had done so.

Michelle: The one thing that, um, when you were talking about the, using the proper terminology, the one thing that you’re already naturally doing is using people first language, a person with Down syndrome instead of a Downs man.

Or, um, so that’s, that’s the one thing having the, the child right. We don’t get, I mean, personally, our family uses it as a teachable moment. Right. I don’t, it’s a, it’s a word what, you know, if you goof, if you, it’s, I feel like most people are not intentionally malicious or I think you’re right on that.

They just don’t know. You don’t know what you don’t know.

Tonya: But I figured if we can, if we can address it openly with this,

Michelle: For sure.

Tonya: Hopefully a parent who is in uh, an emotional moment isn’t having to now explain it That’s right. To someone else who, who cares about them, but doesn’t know that what the words are saying is hurting.

Yep. And um, so yes, um, I’ve also found that the word, the terms, I saw that you were correcting him when he was using disability. So, um, so what is your preference on that?

Michelle: Well, it is it, for us personally, I’m okay with the word disability. But somebody saw it in one of his PowerPoints and said, you know, we could use the word condition instead of disability.

I’m like, if that makes you feel better. Right. We can use condition I,

Tonya: I go back and forth between special needs and disabilities. Yep. And depending on who I talk to. Yeah. Um, my kids both are fine with both terms. So are we. It’s, you know, it just, here’s what it is. It, it, it is, and, and you get to the point where it is what it is.

We are who we are. Um, we can get stuck here or we can move on to, to whatever’s next.

Michelle: Just be nice to my kid.

Tonya: Exactly.

Michelle: And have high expectations.

Matthew: Right.

Tonya: And, and awareness is a big piece of it. And I feel like that’s what a lot of these conversations will do is, I mean, like, so for me personally, I’m learning as we’re talking here.

Um, it’s not that I don’t wanna know, I just haven’t had the opportunity to have this kind of conversation before. So I appreciate that.

Michelle: And, and most people are, myself included, you’re, you’re nervous to ask the question, right? So you don’t want to offend somebody by asking the question. So then you just

don’t learn and you don’t know

Tonya: when you, you had made the comment, well actually you, you had made the comment that, that, that with, with Down syndrome, you have it on, on, on, on your face.

Mm-hmm. So it, it’s a identifiable. Um, but you know, do you find that people want to avoid you and not not engage? Do they come and just ask questions or do they, does it even an issue? Do they just. You’re meeting someone, you’re meeting someone, they, they don’t bring it up at all.

Matthew: I mean, there have been times in, when I was younger when they do talk to, to me like, like I was a kid.

But, but, but now, I mean, they, they don’t do that, but they kind almost do that in, in, in a way where, Where I, I’m not completely treat, treated that, that way.

Michelle: For example, sometimes if we go somewhere, if we are at the doctor’s office or something, they will automatically look to me and you know, and so I just turn to him, he’s perfectly capable of answering his own questions and doing all of that stuff.

So I, is that what you’re talking about, that kind of thing?

Matthew: Yes. It’s more like the social. Interactions and, and, and, and little bit of, of the, the workplace interactions because there’s prejudice of employers either because they, they know of, of what Down Syndrome is, but they’re too nervous to know what it is

The next questions I had were about medical care. I wondered what some of the medical care needs might be for a child with Down syndrome. Matthew started by explaining that some might have a heart defect.

Matthew: defects.

Tonya: Is it a defect?.

Michelle: Yeah, and it’s a couple of different ones.

We didn’t, he didn’t have it, so I’m not very well versed in that. But, um, they almost about 50% have some heart defect. Okay. Um, I would, the number’s gotta be huge that have surgery and are fine. Right. Um, I know a couple of you are a pacemaker, but honestly they do the surgery and they’re fine.

Tonya: Is it, do you know if it’s usually a one-and-done. Or is it like a repeated, as a,

Michelle: I believe it’s a one and done.

Matthew: in another field of medical assistance is, is orthopedics and, and, and all because, because naturally we don’t. Um, defined muscles in, in our body and

Michelle: not quite, not quite,

Matthew: I mean, not, not, I mean, but we do have a lot of muscle loose ligaments, so, so that’s why we go to an orthopedist and an orthotist where our, some of us with Down syndrome have. coordination and, and these are AFOs like, orthotics And, and pediatricians definitely. Right. General practitioners.

Tonya: Right. So your specialists would be more the orthopedic doctor that you’re working with? Yes. Pediatrician was

Michelle: often vision problems or vision. Um, Yes, he had, he should wear hearing aids because he’s had fluid in his ears because the ear canals are really tiny.

So that’s sometimes an issue. Um, I don’t know. Feeding because of the low tone is sometimes a,

Tonya: I wondered about that.

Michelle: A, a challenge. Breastfeeding, sometimes a challenge. They can do it, but sometimes a challenge. Um,

Tonya: so the, so the low, the low muscle tone is, is a condition that’s there from the beginning, but with therapy and with exercise. Does the muscle tone

Michelle: No it’s always, it’s always low, it’s always, and it’s a resting muscle tone. Like he can build, he has muscles, he can do this, and he’s got guns. Right. So when his muscles are active, they’re fine. It’s the resting muscles just kind of ???, they just,

Tonya: so your joint stability would be affected.

Michelle: It, it is. And but again, it’s a range just like with everybody else, just like with the cognitive ability there is, I mean, it’s just like in the typical population, cognitive wise, right? All the way from. Yep. Whatever. Two. All the way up,

Tonya: we have an an aver average for a reason.

Michelle: That’s right. That’s right. And it’s the same exact thing. Just shifted. Okay. In the Down syndrome.

Since Matthew was open to sharing information with me, I asked him about his experience growing up. We were talking about cognitive growth, and I asked if he had needed more time to reach some of the milestones growing up. He and Michelle chimed in to help me understand what Matthew’s path has been.

Tonya: And with that shift, talking about the cognitive, um, abilities here. So you’re carrying on a full conversation here? No, no. Deficit size.

Matthew: No deficit at all..

Tonya: Are there delays though, as far as, did, did it take you longer to reach some of those milestones as every child?

Michelle: Every single one.

Tonya: did it take you longer to get to the point where you were reading independently.

Michelle: Do you know the answer?

Matthew: The only only part that I do know is that, that my mom, when my mom first told me I had Down Syndrome and I was in first grade and, and she had me repeat first grade only. Only once. So I wasn’t graduate in 16 cla in 2016. But me being held back, I graduated a year later in 2017.

Tonya: So spending some, some extra time in those foundational Yes. To get Okay.

Michelle: There was, I, I would say second kid, and I knew what the progression should be, right. But he was, I would say that that reading was his strength. Okay. Um, so he excelled at it. Um, and so it was definitely, it was not as big a deficit for him as some other things were.

Gross motor was a much bigger deficit for him. Okay. Um, probably because of, I mean, he was very, He was very late, even in the Down syndrome community. He was very late to walk.

Tonya: Cause I knew crawling and walking is delayed and for, for the majority of the kids.

Michelle: Yep. Almost everything is delayed.

Tonya: So it’s not that you’re not going to get there, it’s just gonna take longer to get there.

Michelle: Right. For most, for most things. Correct. And hold on. What, what?

Matthew: I was gonna say even delay in, in speech. Like I, right. I did sign, sign language. Okay. Until I was two years old and then two years old, I started talking

Michelle: five.

Matthew: Okay. Oh, five years old.

Michelle: I knew what He knew you. I, so it helped me. True. Um, and it was, and it was cool. We didn’t do any, um, we didn’t do asl. We didn’t sign exact English, so it was just a pro. They were, they had sign ideas, sign did that kind of thing. We. His sign for my mother was this cuz she had curly hair.

Okay, we took it and ran. Whatever. We’ll take it. He uses it consistent. Right. He was talking to us.

Tonya: The, the idea was communication.

Michelle: That’s right. And so he, and as he learned words, he, this, the sign he left, he gave up the signs.

Before we finished, I wanted to make sure I asked about new parents who want to get connected with Gigi’s Playhouse.

Matthew: go to gigisplayhouse.org, which is the main website. And, and, and then there’s a part on the national website. They can look at.

Michelle: Locations,

Matthew: locations across the country, how to start one, and existing ones. So, and, and they go to an existing one, like for example, Charlotte,

Michelle: just for their look at the list of existing playhouses?

Matthew: Yes. And, and then

Tonya: So there is a directory there?

Michelle: There is.

Tonya: Okay, good.

Matthew: And then they can go on on there and see what that Playhouse offers.

Tonya: Excellent. And do you have any advice for. Parents

Michelle: for new parents?

Tonya: For new parents,

Michelle: um, your baby is a baby first, and that’s really, I, that’s the best piece of advice is just treat ’em like, treat ’em like a baby, love them and manage, find the resources as you as you need them.

Tonya: Excellent, excellent. Top of Form

As we wrap up this podcast episode, Steve and I want to express our gratitude for the opportunity to learn about the incredible work being done by Gigi’s Playhouse for the Down syndrome community. We were truly impressed by their dedication and support for individuals and families, and we encourage everyone to check out gigisplayhouse.org to see how you can get involved.

Even if there isn’t a Gigi’s Playhouse location in your area, they offer online options for connection and support. By supporting Gigi’s Playhouse, you can make a meaningful impact in the lives of individuals with Down syndrome.

We also want to thank Matthew and Michelle Schwab for sharing their experiences and insights with us. We learned so much and are grateful for their willingness to be a part of this episode. For those of you who want to learn more about Matthew, we’ll include his contact information in the show notes.

And if you’re listening to this on the audio platform, we encourage you to check out our video on YouTube, where you can see a tour of Gigi’s Playhouse Raleigh. Thank you for joining us today, and we’ll see you on the next episode!

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Parenting Autistic ChildrenShow Notes:In today’s episode, your host, Tonya Wollum, interviews Amit Chawla, a software product manager and founder of a financial planning company. Chawla has two sons, one of whom is autistic, which led him to become a certified financial planner and chartered special needs consultant.

Throughout the interview, Chawla shares his experiences of raising his son on the severe side of the autism spectrum and the struggles he faced in getting consistent treatment for him. He talks about how this experience led him to send his son to a residential school and how it gave him and his wife time to think about their future. Chawla’s wife was an attorney, but she went back to school to become an estate planning attorney, specializing in special needs and elder law.

During the interview, Chawla also discusses the unique perspective on life that the special needs community has and their ability to find gratitude in things that others may overlook. With his part-time financial planning practice, Chawla plans to continue helping families with special needs for as long as he can.

This episode is an inspiring and eye-opening conversation that sheds light on the challenges and triumphs of raising a child with special needs.

Connect with Amit:

Podcast: https://planningforspecialneeds.podbean.com
Facebook: https://www.facebook.com/MySpecialFP
Instagram: https://www.instagram.com/MySpecialFP/
LinkedIn: https://www.linkedin.com/company/my-special-financial-planning/
YouTube Channel: https://www.youtube.com/@PlanningForSpecialNeeds

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

A Parent’s Honest Account About CVIDShow Notes:In this video, we sit down with Stacey Short, a mother who has raised a medically fragile child and found herself losing her sense of self as she took on the responsibility of caring for her son with Common Variable Immune Deficiency (CVID). Stacey shares her experiences, insights, and struggles as a parent of a medically fragile child, including how she coped with the stress, uncertainty, and emotional toll of caring for a child with complex medical needs.

Stacey now uses her experiences to help other women who may be going through similar struggles. She specializes in helping women aged 35 and above who secretly hate life a little too often and have become the person they never thought they would turn into. These women are having trouble recognizing their reflections, and now find themselves yelling at, resenting, and avoiding their loved ones.

In this interview, Stacey offers valuable advice and support for parents of medically fragile children, as well as for anyone who may be struggling with their own identity and sense of self. She shares practical tips on how to maintain self-care, prioritize your own well-being, and seek out support systems that can help you through challenging times. Her story is one of resilience, compassion, and hope, and her insights will be valuable to anyone who is navigating the challenges of caregiving and parenting.

Interested in working with Stacey? Book a free discovery call and find out if her coaching program is a good fit. Be sure to mention you heard about it on the Water Prairie Chronicles for a discount!

https://calendly.com/afewshortminutes

Stacey loves to connect! Find her at:

Facebook: https://www.facebook.com/coachstaceyshort
Instagram: https://www.instagram.com/afewshortminutes_coaching_/
LinkedIn: https://www.linkedin.com/in/afewshortminutes/
TikTok: https://www.tiktok.com/@stacey_coaches

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Strategies for InclusionShow Notes:In this episode, Tonya continues her conversation from Episode 52 with Amanda Owen, author of the Owen the Wonderer book series and founder of the non-profit, Puzzle Pieces. Owen is the main character of the children’s book series, which includes real people from Amanda’s life. The series aims to start conversations about inclusion and acceptance of individuals with disabilities, and each book includes questions for parents and teachers to help facilitate these conversations. Amanda started the series to provide a tool for parents and educators who may not know how to approach the topic of disability with children. The books are based on Amanda’s experiences as a special education teacher and the founder of a non-profit organization that advocates for individuals with disabilities.

If you missed the first part of this conversation, be sure to listen to Episode 52 to hear Amanda’s story of growing up as the sibling to a brother with a rare genetic condition. She also gives good suggestions on how parents can prepare for their special needs child’s future care. You can watch Episode 52 at https://youtu.be/sapGfxihznY.

Since recording this podcast episode, Amanda has launched another project! She created a Gratitude Journal for moms raising children with disabilities. With the help of 30 mommas from across the country, Amanda made something that she wished her mom had 41 years ago when she discovered her brother had a rare disability.

This journal is meant to not only help moms find joy in the hard, but also build a village of other moms walking similar paths. You don’t have to be alone. This journal will help you connect and find gratitude in your journey raising your child.

You can order your Gratitude Journal HERE! piecesofme.org/gratitude-journal

Amanda loves to connect! Find her at:

Website: piecesofme.org

Podcast: https://podcasts.apple.com/us/podcast/pieces-of-me/id1547078857

Facebook: https://www.facebook.com/piecesofmebyamanda

Instagram: https://www.instagram.com/piecesofmebyamanda/

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Meet Today’s Guest:

Amanda Owen is an accomplished children’s book author, blogger, podcaster, and nonprofit founder/director. She is a lifelong advocate for people with disabilities, inspired by her older brother Nick. Amanda is dedicated to empowering women to find their purpose and lead fulfilling lives, free from societal expectations. She and her husband, Justin, have two sons. Amanda’s inspiring message is to dream big, work hard, own your mistakes, and laugh often.

Episode #53: The Power of InclusionInsights from a Children’s Book Author and Non-Profit Founder###### (Recorded February 22, 2023)

Yeah. Well, switching gears here. You have two books, three books out, in the Owen, the Wonderer books? How many are out now?

We have two books. Two. It’s a series of two. Mm-hmm. Now we have future books that will come. We want that to be a series. Well, it is a series cuz it’s two already.

I say it’s two. It’s two. We can officially call it a series at two. Yes. So, tell us a little about, about who Owen is and why he’s the one. And this is, those who are listeners, you can’t see this written, but it’s Wonderer. “W-O-N-D.”. Not “W-A-N-D.” So, he is not out wandering around. Maybe he is, but. So tell, tell us about Owen and how he came into being.

So, Owen is named after, obviously my last name, so that’s the main character. A lot of all the characters in the children’s book, are, are real people in my life. and so growing up, and being the advocate and the sister I was, what I always say, I say this all the time as an advocate, I say, when we know better, we do better.

"When we know better, we do better." – Amanda Owen
Click To Tweet

It’s not that people intentionally are trying not to include or accept or understand. They’re just too darn scared to ask the questions of the fear of doing it wrong, or they don’t know what they don’t know. And so, you know, I was always the kid in the class, you know, that people would ask, I was never offended if they asked because I wanted them to ask.

So, I’ll tell ’em how to think. So like, I guess I still do that today, but had I wanted you, I wanted people to feel, for me, to make people feel comfortable enough to, as long as you’re asking in a respectful way, I’ll tell you anything you wanna know. and so that’s kind of what kind of came out of the wonder, like Owen the Wonderer.

You know, why does this, you know, why does she have Down Syndrome? You know, why does she throw a fit in class? You know, why is she non-verbal? Why does she use the augmentative device? I was, when I was a special education teacher, it was my first non-profit I ever started. It’s actually in the second book.

So the first book is about an individual with Down Syndrome that’s new to the class. Okay? The second book, is centered around, her name is Karlie. she happens to have cerebral palsy. She’s real in my life. and she’s the, the first, the reason for the first nonprofit I ever started and I was a school teacher and, there was, her name was Lauren Tucker, she’s in the book as well, and Lauren was in eighth grade.

Photo by Annushka Ahuja: https://www.pexels.com/photo/mother-helping-her-daughter-on-her-studies-8055795/I started the first, here, in my hometown. I started the first peer tutoring class. I was a middle school teacher, so I started the first peer tutoring official that people could use like eighth grade, seventh and eighth grade students could use as an elective. Instead of going to PE they could go to peer tutoring.

And so they were being buddies in my classroom and one of their names was Lauren Tucker. She was in my first peer tutoring class and she was with Karlie, and we were watching, uh, I did a lot of crazy things as a teacher. So, we were watching Oprah Winfrey, and we were watching, Team Hoyt. I don’t know if you’re familiar with Team Hoyt, but it was a father and son duo and they competed in they’re since retired, but they’ve competed in, he has cerebral palsy, and his dad pushed him in like 5Ks and triathlons and, Iron Men’s and all of these things. Well, Lauren Tucker was an eighth grade student in my class, and so she was watching with Karlie and she turned to me and she said, I wanna do this with Karlie. And Karlie was like pointing to the, she’s non-verbal and she was pointing to the screen and pointing to herself.

Okay, let’s do it. But what happened is Lauren, she asked me one, she stayed after class and she said, why does Karlie drool? And so, I told her why she drools. Like why she wears the handkerchief, why like, and the next day what I saw was, and I’m gonna try not to cry, but what the next, I tell the story all the time.

Photo by Engin Akyurt: https://www.pexels.com/photo/macro-shot-of-heart-shaped-cut-out-1820511/The next day I saw an eighth grade girl who saw Karlie start to drool. and took her own bare hand wiped the drool from Karlie’s mouth. And in that moment I realized that our youth, when they know better, when they know they’ll do better, right? So once she could, she understood about why she did, like, why she drooled or in that she can’t help that.

Then she was able to do what she needed to do to support her friend and that is magical to me. Actually, Lauren is still in Karlie’s life. It’s actually in the book, but so the children’s series in, in a long story. I think those monumental things that have happened in my life of just being the educator, being this to like, I don’t think intentionally kids want.

Now there are some bullies la I mean, let’s just be honest, but like intentionally trying to isolate or exclude, they just don’t know how. And I wanted to provide a book to start the conversation of how to include, how to embrace, how to educate in a way that a k a kid can understand it. And here’s the other cool part that the all the books do is there’s questions for the parents and teachers in the back of the book.

Nice.

That allows a parent, because I see so many times parents be like, oh, don’t stare. Oh, no, no, no, no. Like, don’t ask me that. I don’t know. You know, like we shut down cuz we don’t know. We’re awkward as you know. I, because we were never told, and maybe we’ve never been around somebody with a disability, and so parents don’t know the tools and so then, that kid is learning, oh, well they’re different than me.

Oh, like I shouldn’t be talking about them. Or, oh, I shouldn’t be staring. Right? So then they naturally subconsciously have this fear around it because they’re just, because their parents telling them not to stare or we don’t talk about it. We don’t, I don’t know the answer to that. So, the book allows that conversation to happen naturally, and gives you the tools to be able to say, what would you do or how would you do? And so like, hopefully that we’re learning from our kids because they’re, they’re resilient. They’re amazing. Kids are amazing. So yeah, it was some of the proceeds, 25% of the proceeds of every book sold goes back to my non-profit.

So yeah, I get to create awareness and advocacy, and we’re gonna continue with the series. The next one will be about autism. The next one will be about something else. We’ve got two books out now and we’re rolling with that and trying to manage, but it’s, It also gives, like McKenzie, who happens to have Down Syndrome in the first book, it gave her the ability to go to the schools with me and sign the books and get all the attention. And same for Karlie. so yeah, it’s just been a really cool, that’s, that’s where the book came from. That’s why we do what we do.

Do you use their names in the books or are they a different name in the character?

It is them. And what we did with the illustrations,, one of the cool things is, is we actually sent the picture of like McKenzie to the illustrator and we worked with a, he’s not from here. And so, we worked with the illustrator of, of really trying to capture the true detail behind each individual. Right. And so that was even more trickier, you know, The wheelchair, like let’s say for Karlie, and this is so important because the wheelchair is part of Karlie, like a person that uses a wheelchair.

It’s their body, it’s part of them. And so, you know, when he first sketched, the wheelchair was like a, a, a transport wheelchair that you would see in a hospital. And I’m like, no, that’s not her wheelchair. Like, we need to get it right. You know? Like the headrest. And she has these flaps, like her name needs to be on it, so, because it it’s her, it’s her identity. So that was, yeah, they’re, they’re them in the book.

I was, I was wondering how you had gotten the illustrator to make sure it was represented right. I like that because a lot of times you do see just that, ambulatory type wheelchair that you see in the hospital when you, when you go into the door, the first, the front of a church or something if you’re going somewhere.

But that isn’t what most kids are using whenever it’s custom made for them. All right, so you talked about the, the back of the book. So, there’s questions for educators and for parents, both.

Mm-hmm. Yep.

And are they just like bringing up conversations?

Yeah, so they’re like, post questions, guided questions to kind of start that conversation with them.

And we also have lesson plans that we’ve designed around each of the books. Well, the lesson plans haven’t come out from the second book. but for the first book, we already have lesson plans and so, yeah, uh, we, we. There’s lesson plans, there’s worksheets.

Nice.

It’s just to start the conversation because again, when we know better, we do better.

And so we just want families, and this is really not, that’s the crazy part. This book is not a book for the special needs family. Right? It’s not. I mean, it can be, but it’s really for, to understand. It’s the perspective and I haven’t seen this a lot, but like our book is from the perspective of the neurotypical student individual that is trying to learn and understand, has the real questions of how to navigate, and shows him having conflicts like for example, in the second book.

And without giving away too much, but I mean, I’m not giving away anything but in the second book, it’s, they’re on, uh, a playground that’s actually mirrored after Owensboro, Kentucky’s playground that we’re known for. They’re on the playground and his friends from school come, and he’s playing with Karlie and they wanna go down the slide.

Well, obviously the, the playground is not wheelchair accessible. Karlie can’t go down the slide. So, he has the internal conflict of, how do I include her? That I really wanna go with my friends, but I don’t wanna hurt her feelings, so how do I include her? And so he works through that to figure out what that looks like to it makes kids hopefully think. There is another solution, there’s a way we can include, you just gotta be creative around that.

Right. so yeah, that, that’s, that’s the books

You had, you had talked about how, parents are telling kids, you know, not, not, not to stare not to ask questions. My daughter talks about that, that, if she has her cane out, she’ll notice that kids a lot of times are just kind of looking and she’ll see the parents pull them aside and she’s like, you know, just ask.

It’s. It’s not, it’s not rude to ask a question, what’s rude is to point and stare and to, to walk away without ever engaging. And, and so, and for her, because she has low vision, she’s able to see them walking away from her and she’s like, you know. Hi, I’m over here. I can, I, I can explain it all to you, but I actually, but I do think it’s, yeah, it was a, it’s, it’s, it’s a case where, you know, it’s, it’s, it’s a misguided way of treating it where they, they, they feel like they’re doing the right thing by not being rude, but it comes across the other way.

A hundred percent.

So I, I cut you off when you were saying something too.

Oh, no, I actually did a, uh, I think a, a column, I write a column, but like a column. It was either a column, a blog or a podcast episode.

I don’t know. They all blend together, but it was like, I welcome you to stare, like I will teach. This is what I want. If you’re gonna stare, or this is what I want you to do after you start to stare. And so, because I think that we naturally, if you’re talking about the disability community, we. We don’t want the stares to be a stare of judgment, but if you’re gonna stare, then let it make it count and this is what we want you to do with it.

Right? So, I kind of walk through that in some something I do,

I like the perspective of that. So you do have a title that you’re working on now, or it’s the next one that you will be working on autism.

We don’t have a title, obviously it’ll be Owen the Wonderer. We don’t have the title yet.

Okay. We have some concepts we’re throwing around, but autism’s gonna be our most biggest challenge just because there’s a wide spectrum and Yes. so we’re trying to be very creative in one book. How do we capture that? So, yeah, it ought, we’re up for the challenge, but we’re just gonna, we’re kind of riding the wave right now and celebrating, cuz we just came out with our second book and we’re working on another project right now, and I don’t know when this will air, but we’re announcing it March the first. Okay. Of what that project will be, but it’ll be a lot for special needs mamas,

Oh, good. That’s good. So, we’ll, again, we’re linking your, your contact information. So those are listening March 1st, check. Yeah, check to see, see what it is,

And, where can our listeners purchase your books?

So they can go to piecesofme.org, which is my website, where they can access a lot of the things that I do there. So, it could be there. And if they follow me on Instagram, which is @piecesofmebyAmanda in the link, there’s a direct link that you can buy on there as well.

Okay, great. Great. All right, so that’s Pieces of Me by Amanda. Tell me about Puzzle Pieces.

https://puzzle-pieces.orgOh, Puzzle Pieces. So my elevator pitch for puzzle pieces, we are what started out 10 years ago to being, I, I just wanted a transitional place for adults and for kids after school of what my brother didn’t have after he graduated high school.

He really exhibited a lot of behaviors. He was missing what school brought to him. The social, like it was the only school was the only thing that was outside of my family. My family didn’t know what happened at school kind of. Right. It was his thing. And so, and then I went off to college and then it was just bad for my brother.

And so, I didn’t, I realized as being a middle school teacher, I start having these conversations with these parents of what does life look like after high school? And there wasn’t a lot of options. Jobs were limited at that time, you know, there wasn’t no options, it was jobs, you know, post-secondary education.

Now that’s getting a lot better with certificate programs within colleges. Like we’re in a different state even now than we were 10 years ago. So I just wanted a place, like a social place that people like my brother that had a variety of different, different disabilities. When they graduated, they had a place to like meet up and be kind of a community center and go out to lunch or go to bowling or do the things that they wanted to do, but also work towards skills.

So, because if they don’t work for ’em, they’ll lose it and it’s not generalized. So I just kind of wanted that, well that was 10 years ago. We started off with that 32 clients. It was just gonna be a social place. That was the goal, at seven staff and now 10 years later we serve, I think we’re up to 430 individuals that we support

Wow.

With disabilities. we have employment. We’ve placed 69 individuals with disabilities into the workforce. Yes, we have a huge division within that. We do long-term living care. We have several houses. We have an Owen Autism Center. It’s named after me unfortunately, but we, uh, support, our youngest is 18 months of age.

Our oldest, oldest is 21 in our Owen Autism Center. so we do a lot of ABA therapy. We do a lot of, summer school after school for those just with autism. We partner with the schools, we work with the teachers and the therapists to really just be the centerpiece, no pun intended with piece of Puzzle Pieces, but like the centerpiece that kind of really allows us to connect. Right?

Like school doesn’t just have to be school therapy does, it doesn’t have to be therapy, but like how do we group it together to be one big., to, to let it build on one another. So, and then yeah, then we have day training programs. I’m sure we have something else that I’m not thinking of, but, so yeah, we now operate, uh, it’s 4.6 million, our vision to expand.

Wow.

Photo by Quang Nguyen Vinh: https://www.pexels.com/photo/people-standing-on-cliff-2132087/And this upcoming year, we will probably double that. I have over a hundred. So all of this, just because I had a dream of supporting and providing opportunities for those with disabilities has led into really, being a trailblazer here in my community of really looking at the unique services.

It doesn’t have to be, we should have a buffet, right? Like it shouldn’t, we’re not a fit for everybody. I’m not saying everybody with a disability in Owensboro comes to us, like we try to work ourself out of a job, but it should be a person with a disability just like. 20 different gyms out there probably in one hometown.Right?

Right.

Like there’s in, in a, a way, like in a 20 mile radius, there’s probably 20 gyms because every gym has something to offer that maybe builds their community or that they like about that environment versus another. We have the opportunity, have a lot of different buffet of opportunities to select people with disabilities do not.

So that’s what we try to do, is provide an opportunity of array of things of it. It’s not cookie cutter. We’re not providing a service that they have to come to us and fit into that service. Our service and our supports really fit into their lifestyle.

If our listeners have any questions after listening to this, what’s the best way for them to get in touch with you?

You can again, uh, track me on to our website, which is piecesofme.org. That’s like my personal platform, which would be directly towards me and all of the other things that I do. Now, there is, if you’re interested in learning more about Puzzle Pieces, we do have a website as well. It’s puzzle-pieces.org.

Maybe one day I do plan to franchise that and maybe it’ll be in a town near you.

Oh, cool.

So, we do have a Facebook page and an Instagram page for Puzzle Pieces, @puzzlepiecesky, and then the best platform for me that I typically stay on and, and, you know, build a community around, it’s Instagram and that is @piecesofmebyamanda and yeah, I’m always there. So.

Excellent. Excellent. And she, she has some, some really interesting stuff that, that she’s posting on it, on Instagram. So Amanda, thank you for taking some time to go through all these variety of questions here with us today.

I’ve really enjoyed getting to know you a little bit and hearing a lot about what you, what you’re doing here. So thank you for sharing your expertise with us.

Thank you for having me. This is awesome. I appreciate your time.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Special Needs Planning for the FutureShow Notes:In this episode of the Water Prairie Chronicles podcast, host Tonya Wollum interviews Amanda Owen, founder of the nonprofit organization Puzzle Pieces. Amanda shares her personal journey of growing up as a sibling to a brother with a rare disability and how it has impacted her life. She talks about the emotional impact of having a sibling with a disability, the challenges and joys that come with it, and the importance of emotional intelligence in processing those feelings.

As a special education teacher, Amanda felt called to do more to support people with disabilities and founded Puzzle Pieces, a nonprofit organization that has been serving the community for almost 11 years. Through her own experiences and the work of Puzzle Pieces, Amanda has become a coach for parents and siblings of individuals with disabilities, helping them navigate the emotional and practical aspects of their situations.

In this candid and heartfelt conversation, Amanda shares her perspective on growing up as a sibling to a brother with a disability and the lessons she has learned along the way. Whether you are a parent, sibling, or friend of someone with a disability, this episode will provide valuable insights and inspiration on how to support and advocate for those with disabilities.

Join us next week for the rest of Tonya’s conversation with Amanda. She talks more about her experiences, the books she’s written to help support children with disabilities and spread awareness and acceptance, and her work with her non-profit, Puzzle Pieces.

Amanda loves to connect! Find her at:

Website: piecesofme.org

Podcast: https://podcasts.apple.com/us/podcast/pieces-of-me/id1547078857

Facebook: https://www.facebook.com/piecesofmebyamanda

Instagram: https://www.instagram.com/piecesofmebyamanda/

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

“2 Truths and a Lie” Game:

Can you guess which statements Amanda shared were her truths and which was her lie? Post your best guess in the comments below. We’ll post the correct answer on Instagram next week so be sure to check and see if you were right.

Her brother was the 11th person in U.S. with his diagnosis.
She is 2 episodes from 100th on podcast.
She loves to cook and try new recipes.

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Episode #52: Caring for Your Child with DisabilitiesHow to Plan for the Future###### (Recorded February 22, 2023)

(Full transcript will be added soon.)

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Inclusion for Special Needs Families at the NC State Fair!Show Notes:Join us on a journey to the heart of the North Carolina State Fair where we witnessed something truly special. In this episode of Water Prairie Chronicles, we explore Access ABILITY Day, an event that’s all about creating a sensory-friendly event that provided inclusion for special needs families. Hear from families who took part in the event and learn about the Chill Out Zone, a special area set up to help families with sensory needs find a quiet space to relax and recharge. If you’re passionate about creating a more inclusive world, this episode is for you.

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Episode #51: The NC State Fair Access ABILITY DayInclusion for Special Needs Families###### (Recorded October 16, 2022

Episode 51: Inclusion for Special Needs Families at the NC State Fair

Welcome to the Water Prairie Chronicles, the podcast that’s all about supporting and empowering parents of special needs children. Today’s episode is going to take you on a journey to the heart of the North Carolina State Fair, where we witness something truly special. Whether you’re a parent of a special needs child, or simply someone who’s passionate about creating a more inclusive world, this episode is for you.

Last October, we had the pleasure of interviewing Heather Overton from the North Carolina State Fair, who gave us an inside look into their Access ABILITY Day, an event that’s all about creating a sensory-friendly and inclusive experience for visitors with special needs.

I was intrigued by their mission to create a fully and. Inclusive experience and decided to go see it in person. The event was held on a Sunday morning when the traffic to the fair is typically not as busy. We entered through the same gate those needing handicapped parking would use, and we easily found our way to the area Sponsored by bandwidth, which was specially designed to cater to children with sensory needs bandwidth.

Volunteers were on hand to help kids enjoy sensory-friendly activities like pumpkin decorating and making shaker water bottles. My goal was to talk with some of the families visiting the fair specifically for the Accessibility Day event, and to see what their reaction. We had the pleasure of meeting Madeline and her mother Kate as they were making a sensory bottle.

Kate and Madeline spoke with Tonya about their experience at the fair and gave some suggestions for future inclusion for special needs families of visually impaired children.What surprised us the most was that Madeline was already one of our listeners, having discovered our podcast through one of her teachers. And as it turned out, Madeline and my daughter Emily have a shared passion for gaming.

Madeline: Wait, I know you, I’ve seen your podcast.

So this is The Water Prairie Chronicles.

Madeline: That’s amazing.

Tell me your name again.

Madeline: Uh, my name is Madeline.

Madeline. And.

Kate: Uh, I’m Kate.

Kate. Okay. So Madeline and Kate and, um, they’re here at the Access ABILITY Day Fair. And there’s a sensory exhibit they’re doing. And what are these sensory bottles that you’re making?

Kate: Yes. Yeah, we can put all kinds of like beads and glitter and they float. Yeah, .

Cool. So Madeline, did you just come in or have you been here for a little bit today?

Madeline: Um, we came in a little early, but this is like, we’ve just started doing like fair things.

Okay. So what’s, what’s the favorite thing that you’ve seen or done so far?

Madeline: Um, we got to go see the chickens.

Okay.

Madeline: And we had donuts.

Well, you have to have a, have a fair food, some something fried.

Madeline: Absolutely. Yes. Donuts and corn. That’s my goals.

There you go.

During our conversation with Madeline, we asked her to share her ideas for helping children with visual impairments to better enjoy the fair. And boy did she have some great suggestions.

Do you have any, um, advice that you would give for the Access ABILITY Day crew for next year that something that you’d like to see that maybe you don’t know is here yet?

Madeline: Um, I don’t know. I feel like sometimes. I, a lot of the fair is for like people with sensory disabilities. Um, and I wanna see like a little bit more for like helping visually impaired and hearing-impaired kids be able to participate in activities and games.

Do you have a suggestion for maybe a type of hands-on activity they could do that would be a good sensory one for the blind?

Madeline: Um, I don’t know. It depends A lot of. Um, kids that don’t have a lot of sight do a lot of their things by hearing and touch, so

Okay.

Madeline: Maybe something centered around that. Something tactile so you could like, measure better or like braille. So

Excellent. I, I like that advice.

Kate: I think you would also love to snuggle some animals.

Madeline: Yes.

Kate: We could have animals that we could touch or hold. That would be pretty special.

Oh, that’s a great idea. Like puppies or kittens or something. Yeah. On that. All right, well, we’ll let you get back to your sensory bottle. I appreciate you, um, checking in with us and letting us, um, include you on our podcast for this week.

Madeline: Yeah,

and it was nice to meet you actually. Cause I, I really appreciated your, your comment that, that you made. It was one of our first episodes.

Bandwidth volunteers supervised the activities in the Chill Zone area for families with special needs children who needed a quiet space to relax away from the noise of the fair.In this next video clip, we went to explore the Chill Zone, a special set up by Bandwidth volunteers to help families with sensory needs, find a quiet space to relax and recharge.

Knowing that this area is a vital resource for many families, we were eager to see it in action and learn more about how it’s being used. So, without further ado, let’s take a look at our video footage and see what we discovered when we spoke with some of the volunteers there.

Have you had a good turnout today?

Bandwidth Volunteer: Yeah, so far we’ve had a pretty, um, steady flow people coming in.

Excellent.

Bandwidth Volunteer: Yeah.

Have families seem to have known that you were gonna be here? Or did they just stumble?

Bandwidth Volunteer: Yeah. Yeah, I think most have heard about it. Um, we actually had, one lady say that she was like, very appreciative that we’re doing this for the kids and stuff.

Excellent. And we’ve interviewed a couple people and they’ve, they’ve been really happy with the sensory events that are going on and, um, and they, they weren’t all aware of it. They’re just kind of finding it as they come through.

Bandwidth Volunteer: Yeah.

So. All right. Well thank you. I appreciate the time that you’re putting in and just taking a few minutes to talk with us today.

Bandwidth Volunteer: Yeah, definitely. Thank you.

Arlisha speaks with Tonya about her experience at the NC State Fair.After seeing how much the Chill Zone was helping families to take a break and recharge at the North Carolina State Fair, I spoke with a group of parents and teachers from ATAP 4 Autism who were experiencing the fair in a different way, I had the pleasure of running into this group as they were enjoying their lunch, and I was thrilled when they agreed to take a few minutes to speak with me about their experience at the fair.

One of the moms, Arlisha shared some valuable insights into what it’s like to navigate the fairgrounds with a child on the spectrum and offered some great suggestions for how the event could be made, even more inclusive and accessible. In this next video clip, you’ll hear directly from Arlisha and get a firsthand look at how families with autism were able to enjoy the North Carolina State Fair.

Let’s take a look.

Arlisha: I heard it through ATAP.

Excellent. And, um, what, what has been his favorite feature so far?

Arlisha: The rides.

Really?

Arlisha: Yes, he loves the rides..

So he is a thrill seeker?

Arlisha: Yes, he definitely loves to ride..

Did you check out the chill zone? Does he need quiet spaces?

Arlisha: So far he’s been doing good with the crowd and everything.

Nice.

Arlisha: So it’s been this, this is the first time since he was five. He’s actually been in a big crowd like this, so he’s doing good so far. I’m proud of him.

He seems to be enjoying it sitting here. So .

Arlisha: Yeah. Yeah, yeah.

If you could give the fair advice for next year of any changes they could make or something they could add or take away, what, what, what would be the first thing you would think of?

Arlisha: Um, honestly, for it to be more suitable for them. Cuz I noticed like, it’s not one o’clock yet and it’s a real big, crowd and it’s, yeah, . So I, it’s still supposed to be catered to ’em, but it’s kind of not. So,

so having a little more space, is that what you’re thinking?

Arlisha: Yeah. A little more space. Yeah. It was crowded. A little too crowded.

Right

Arlisha: because they said after one, That’s when the regular crowd does come and seemed like they all came at nine o’clock like we did . So if they would promote it more better for when it’s a day for them.

Excellent.

Arlisha: So we can understand that it’s, you know, for kids like that.

Right. Right.

Arlisha: That’s what I would say. I also would say like more signs and you know, more vendors about kids like them as well.

Okay.

Arlisha: That’s what I would prefer.

Did you try the, the crafts that they have?

Arlisha: No, not yet.

Okay. So I know they have like a sensory bottle that’s like an oil and water bottle that you can put it’s visual.

Um, and then they have pumpkins that you can decorate.

Arlisha: Okay.

So those are just right at this table right here.

Arlisha: Oh yeah, I like that.

The NC State Fair logo for 2022.I hope you enjoyed learning about the North Carolina State fair’s Access ABILITY Day, and hearing from some of the families who were able to take part in this special event.

It was truly inspiring to see how the fair organizers and volunteers went above and beyond to make sure that families with special needs could have a fun and enjoyable experience. Now I wanna hear from you. Are there any special events for families with special needs happening at your state fair?

Let me know in the comments below, and we may feature them in an upcoming episode of the podcast. Thank you for joining me on this journey to explore the many ways in which we can support and encourage families with special needs.

This podcast is made possible by support from our listeners. If you wanna help offset the cost of producing the Water Prairie Chronicles, become a supporter at https://buymeacoffee.com/waterprairie.

You’ve been listening to The Water Prairie Chronicles, a podcast created to encourage and support parents of special needs children. If you found value in this episode, hit the like button and subscribe so you don’t miss future episodes of the podcast. I’m glad you were able to join us today, and I hope to see you back next week for another episode of The Water Prairie Chronicles.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

A Candid Interview of Life with DyscalculiaShow Notes:Imagine not being able to tell time, count money, or do basic math in your head. For people with dyscalculia, these everyday tasks can be a real challenge. In this video, we’re going to take a deep dive into dyscalculia and explore its causes, symptoms, and potential solutions.

Michelle Steiner joins Tonya to talk about her experiences with dyscalculia and other invisible disabilities and how she’s learned to embrace the disabilities and achieve success in life.

Connect with Michelle:

https://michellesmission.blog/
https://www.instagram.com/steiner7250/
https://www.facebook.com/profile.php?id=100013356902200

2 Truths and a Lie:

Can you guess which statements Michelle shared were her truths and which was her lie? Post your best guess in the comments below. We’ll post the correct answer on Instagram next week so be sure to check and see if you were right.

Michelle has 3 stories coming out in an anthology
Michelle is going to Canada this summer
Michelle will be growing butterflies with a kit this summer

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Episode #50: My Journey with DyscalculiaA Candid Interview with Michelle Steiner###### (Recorded February 7, 2023)

Welcome to the Water Prairie Chronicles, a podcast created to encourage and support parents of special needs children. I’m Tonya Wollum, and I’m glad you’re here.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Advice for Parents Considering Cochlear Implants for Their Deaf ChildrenShow Notes:This is the second half of my recent conversation with Felicia Aquilo, the mother of two young boys who were born profoundly deaf. She and her husband, Steve, have faced the challenge of giving their boys the gift of sound; equipping them with cochlear implants, teaching them to speak as well as sign language, and helping them appreciate music and other sounds. Join us as we hear from Felicia about her journey, her sons’ progress, and her very real hopes for their futures.

This is part 2 of Felicia’s story. Be sure to catch the first part in Episode #48!

In part 1, Felicia shared her “facts” for the game of “2 Truths and a Lie.” Can you guess which statements Felicia shared were her truths and which was her lie? Post your best guess in the comments below. We’ll post the correct answer on Instagram @water.prairie next week so be sure to check and see if you were right.

2 Truths and a Lie:

Felicia loves cooking and wanted to be on Master Chef
Felicia enjoys training and running marathons
Felicia’s known how to snow ski since she was 2-years-old
Follow Felicia on Instagram:
- @feliciaaquila
Hands and Voices, a resource for families of deaf children:
- Instagram: @handsandvoices
- Website: www.handsandvoices.org

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Episode #49: Giving Our Sons the Gift of Sound (Part 2): Raising Deaf Children with Cochlear ImplantsAdvice for Parents Considering Cochlear Implants for Their Deaf Children###### (Recorded January 31, 2023)

( Transcript to be posted soon)**

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

How Cochlear Implants Opened up a New World of CommunicationShow Notes:Meet Felicia Aquilo, a mother of two boys who were born profoundly deaf. With loving guidance and unwavering support, Felicia and her husband embarked on an amazing journey to bring their boys the gift of sound through cochlear implants. What started out as an uphill battle is now a turning point – Felicia’s sons are thriving in their new life with sound, learning to speak, and harnessing the power of both spoken and sign language. In this exclusive interview, Felicia shares her story, how the boys are adjusting to the new technology, and how music has become a source of joy for her family.

This is part 1 of Felicia’s story. Don’t miss part 2 coming out next week!

Can you guess which statements Felicia shared were her truths and which was her lie? Post your best guess at https://instagram.com/water.prairie/. We’ll post the correct answer on Instagram a week after the part 2 episode posts so be sure to check back later to see if you were right.

2 Truths and a Lie

Felicia loves cooking and wanted to be on Master Chef
Felicia enjoys training and running marathons
Felicia’s known how to snow ski since she was 2-years-old
Follow Felicia on Instagram:
- @feliciaaquila
Hands and Voices, a resource for families of deaf children:
- Instagram: @handsandvoices
- Website: www.handsandvoices.org

During our Season 2 episodes, we’ll be asking each guest to share “2 Truths and a Lie” about themselves as a fun way to get to know our guests. We’ve decided not to give the answer right away so our listeners can try to guess the true answers. In the comments section for this video, add your thoughts to which of Lenora’s answers were true and which was the lie. Here are the answers she gave us during the interview:

She had a baking business.
She hiked the Appalachian trail.
She hiked the Tour du Mont Blanc.

*** We’ll post the answer on our Instagram account a week after this video posts so go there and check to see if you got it right!

Instagram: @water.prairie
Twitter: @waterprairie

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Episode #48: Giving Our Sons the Gift of Sound: A Mother’s Story of Cochlear Implants and ASL (Part 1)How Cochlear Implants Opened up a New World of Communication###### (Recorded January 31, 2023)

Welcome to the Water Prairie Chronicles. A podcast created to encourage and support parents of special needs children. I’m Tonya Wollum, and I’m glad you’re with us today.

In today’s episode, you’ll meet Felicia Aquilo, a mother of two boys who were born deaf. After much research, Felicia and her husband embarked on an amazing journey to bring their boys the gift of sound through cochlear implants.

This is part one of my interview with Felicia, and I encourage you to make sure to listen to part two next week to hear the full story of how Felicia is actively involved in helping her sons communicate, how they’re adjusting to their cochlear implants, and how music has become a part of their lives.

Welcome back to the Water Prairie Chronicles. Everyone, we appreciate you being with us today, and I have a special guest with us. This is Felicia Aquilo. Felicia, I found on Instagram. I’m following her and enjoying what she shares about her family, and some of her experiences, and we’re gonna talk about some of that in the interview today. Felicia, I’d like for you to introduce yourself to us and then we can get into a little more detail about what I wanna talk about, but I don’t wanna release all the information upfront.

Thank you, Tonya. My name is Felicia Aquilo. I am the mom of two young boys who both happen to be deaf. They both have bilateral cochlear implants, so they have access to sound. It’s been a rollercoaster. So many crazy things happen in the past five years. My oldest is five, my youngest is almost two. So yeah, it’s just been a very exciting, unexpected experience.

So this is season two. We’ve started doing a different type of getting-to-know-you. So those that are listening, if you didn’t hear last week’s episode, we are now doing “Two Truths and a Lie” instead of our Speed Round of 10 questions. So I’ve asked Felicia to think of two things to share with us that are true and one that is not true.

She’s gonna mix them up so you don’t know which is which. And we’ll be posting this on Instagram and on Twitter so that you can post your guesses of what you think the answer might be. And if you’re watching this on YouTube, you can post it in the comments below as well. And in about a week, we will share with you what the answer is on Instagram so you can see if you are right or not.

So, Felicia, what are your two truths and a lie?

Well, number one, I love cooking and at one point in my life I wished I could be on Master Chef or own a restaurant. . Uh, number two is I really enjoy, um, training and preparing for running marathons like five Ks. And number three is I’ve known how to snow ski since I was two years old.

So let’s go back to the beginning. The beginning of when you first had your oldest child, Silas. When did you find out that he was deaf?

So I found out that Silas was deaf. Rewind a little bit. Um, when he was born, it was a perfect pregnancy, completely typical, nothing out of the ordinary. I thought I was, was prepared for anything and everything that could possibly happen.

Newborn hearing screening example.
(This image was created on Canva.com.)And he was born, I had this perfect new baby and within 24 hours we have the newborn hearing screening. So they took him back for that. I wasn’t expecting anything and, they said that he had failed it, which I hate that, that terminology because there’s no pass or fail for a hearing screening. It’s just what happened, you know?

Um, They told me that he had failed the hearing screening, but not to worry because it was probably just fluid, the amniotic fluid, and it’ll go away. So at that point, I really didn’t, uh, fully process. I had just had a baby. I was trying to wrap my head around everything and they, the next day they took him back again for the same test, and he, the same thing happened.

It was the same results that he had the first time. So that’s when they were like, we’re going to refer you to an audiologist and see what happens.

So that was just, just immediately then with that. And what was the diagnosis that they found out?

Before cochlear implants can be considered, a child must be evaluated by an audiologist.
(This image was created on Canva.com.)So two months later we went to the audiologist appointment.

He had what’s called an A B R. It’s an audio brainstem response test. And at that point, they told me that he was profoundly deaf. There was no response to any of the frequencies that they had tested. Um, and it was sensorineural meaning that it was not going to improve at all.

Okay. That’s tough cause you’re not ready for that when you’re first coming in. Did the doctor give you any contacts in your community or anything to help you kind of know what to do next?

So after, when he was a newborn, right after, uh, we got home from the hospital when he was born, there was really nothing except for the reference for the audiologist, I guess is the right word.

There was nothing other than that. So after we went to the audiologist, when she said, I’m sorry, your son is deaf, it was basically follow up with, um, another audiologist. We’re gonna start the process for hearing aids. This is what’s going to happen. . So I was like, okay, well wait a second. Let’s take a step back.

You just told me my son is deaf and now I have to leave and I am completely unprepared for what comes next.

Right, right. So, so at that young, do they do hearing aids right away?

Before cochlear implants can be considered, a baby must first wear hearing aids for a period of time.
(This image was created on Canva.com.)They will. So they’ll, uh, early intervention will start. Basically, as soon as they get the hearing test done and all the testing, like the prerequisites for the hearing aids. Silas was, he finally got his hearing aids at about seven months.

And that’s because I took forever to really process the information and come to terms with it. In the beginning, I didn’t wanna believe it, so I got opinion after opinion. Um, trying to find different types of, you know, the solution. I, I didn’t know anything about being deaf or deafness or childhood deafness or deaf culture or the deaf community, so it was trying to figure out a way to make this not my reality when in turn that wasn’t what I needed to be doing at all.

Was he able to keep them on or did he pull them off all the time?

Oh, they were always off and they made the most awful noise and the feedback noise of the screeching sound in your ears. Um, it was terrible and not one of my most favorite parts of the process because they did not give him… Isaiah and Silas. Their hearing loss is two separate. Um, they, it’s the same type of hearing loss, but two different degrees. So Silas’s hearing loss did not give the hearing aids did not give him any access to sound whatsoever because of his profound deafness. So it was just kind of a, in order to go the CI route, if we were going to choose that you have to do a trial period of hearing aids to make sure that they aren’t working.

Okay, so he’s seven months old. When he got the hearing aids, did you know that that’s what you were doing at that point? Just doing the trial.

We knew we were gonna give him hearing aids. We did not know for sure that cochlear implant surgery was something that we wanted to do right away.

Um, originally we had thought that we were going to wait until he was able to tell us that he wanted cochlear implants. It took a lot of talking to people in the deaf community. I, I sought out so many people in the social media. Space that were going through something similar. Um, some people that we went to an ASL class and I wanted to meet a couple deaf people that could possibly give me some answers.

I looked for people that were using cochlear implants, people that had kids that were using cochlear implants, and even people that did not agree with cochlear implants because I wanted to know everything I possibly could. Um, because these doctors are coming at me saying, this is what you’re gonna do next.

This is the process. This is how we’re gonna go at it. And I’m just like, can we, this is a, a huge thing. I’m, my kid is he’s a baby and you’re talking about putting something in his head. I need to know everything. .

Right. Right. I have never talked to anyone who had a child who had used cochlear implants.

I remember. Rush Limbaugh when he first was losing his hearing and that was my first connection with anyone. And so I didn’t know if it was even children or only adults. Um, cuz it’s, it’s just, it’s not the world that I’ve been in, so I haven’t had that access. But, um, but I’m just thinking through, you know, as, as, I mean even a seven-month-old.

You’re still digesting things, you’re still learning how to get feeding schedules together, you know that that’s, that’s hard enough between sleeping and feeding at that, at that point for your first child and then to have to do all of this. Did you get some good feedback from these contacts between the ASL classes and the deaf community?

Were you able to find some people to help you?

I did. I found a lot of good information, a lot of scary information, um, a lot of just differing opinions. People from all different walks of life, kind of giving me their insight, what they believe. Um, he didn’t actually get implanted until almost 18 months because it took me that long.

I always say that I missed out on the first about six months of size life because I was so worried and overtaken. This diagnosis and that I didn’t know anything about that. It really, um, just caused me to miss out on a lot of, like all the baby firsts of my first baby, if that makes sense.

Yeah. Yeah. I can understand that. However, looking at him today, he’s not missing anything because of that. He was getting what he needed. But I know what you mean though, cuz you wanna have those memories. You wanna have that focus to be different from what it had to be. And we were the same way with our daughter. We were asking people. We were calling everyone we could think of just because we didn’t know where to go.

We didn’t know what to do, and we didn’t wanna make the wrong choice. So, you know, trying to even figure this out and knowing that as a young child, everything that you do now feeds into the future. And you know, if you make the wrong choice, you know, not that there’s always a right or wrong choice, it’s just your choice is what’s the right choice.

But you don’t know that one. If you’re going through it, you’re trying to figure out, you know, what is the right one for me even cuz I don’t have enough information to know those choices. So Silas was a little bit older whenever Isaiah was born. Um, did you know right away with Isaiah, did you pick up on it or was it the same hearing?

So it was. He had the same hearing test. We had already had the audiologist appointment scheduled because we knew that there was a possibility, a 25% chance of him having some degree of hearing loss as well. So we wanted to be on top of it, ready to go. Um, he did have the hearing test in the hospital, and he only failed.

I’m using quotes here, fail, failed the hearing on the right side. So the left side was better than the right side. Oh, and yeah, so we weren’t really under, we didn’t really understand what was going on there. We thought maybe it was a fluke and it was fine because they did bring up the whole fluid thing.

Again, not knowing that deafness runs right in our family or with, you know, our babies. So we kind of just went with it. We knew that when we left the hospital, we were already going to go to the audiologist. And when we got to the audiologist about a month and a half later, um, it was Silas’s audiologist.

So we already had a relationship with her and it was a lot good. Better of an experience being the first time she said that his hearing test looks a lot like Si’s, but it’s severe, sloping profound. So a few of the. deafness is a spectrum. So a few of the frequencies that she tested were coming back, that he was hearing just a little bit and it was different than what Silas’s was.

Okay. Okay. So did you, um, did you already know that if he, if he were going to be determined as deaf when he was born, that you would do the cochlear implants with him as well?

Absolutely. By this time, Silas was three and a half, three, almost three and a half, and we had seen such wonderful results and we knew, I knew wholeheartedly that I made the right decision at this point because of the way Silas loves his relationship with sound.

He loves to hear music. He knows that he doesn’t have to wear his processors whenever he doesn’t want. , but I would say that a good 90% of the time he has them on and it’s always because it’s his choice. So, seeing all those first, like him, you know, the first time he was verbally able to say, I love you, or hear me say I love him, and ask for music and sing along to music.

Just all of those first times and all those magical moments made everything else just so worth it.

I’ve seen some posts you’ve had on just in the last few months, um, of the boys with, with music going, and I’m thinking the chaos in your house sometimes, because the volume probably is not controlled as much.

No, they’re, that’s the one thing about deaf children is they are not quiet at all.

Yep. with the cochlear implants. So humor me here because I’m totally ignorant on this. . I see. Um, in pictures that you have of Isaiah, he’s wearing a headband. Mm-hmm. . So the implant is attached to, is it to the bone in the, like, is attached to the skull.

How is it, how is the actual implant being used?

https://commons.wikimedia.org/wiki/File:Cochlear_Implant.png
BruceBlaus, CC BY-SA 4.0 https://creativecommons.org/licenses/by-sa/4.0, via Wikimedia CommonsSo there is an internal piece that sits underneath the skin, behind the ear. Um, they actually implant it behind the ear and the electrodes go down to the cochlea. . Um, the, that’s what sends the sound signals to the cochlea to be processed in the brain as sound.

It’s magnetic. Okay. So the external piece sits on top of the internal piece, um, and it kind of just magnetizes and it, it sits there, um, right on top of it. So that’s how it stays on there.

An example of the type of device Felicia’s boys wear.
(This image was created on Canva.com.)So, so when he’s wearing the headband, is that holding it?

Yeah, that’s just a retention method because if he rips ’em off or takes ’em off or they fall off, it helps me to find them or just helps to keep ’em on, especially when he’s that little.

Right. Well that’s what I was thinking cuz I noticed pictures that you’re showing of Silas, he’s not wearing the headband.

Felicia with her sons, Silas sitting beside her and Isaiah sitting in the middle. Isaiah is wearing a headband like she describes in the interview.
(Photo provided by Felicia Aquilo for use in this blog post)No. He, right now he has a sports necklace retention line, which basically is just a black, uh, cord necklace he wears and there’s two little hooks that hold the batteries in there so that way if they do fall off, they’re not gonna just, they’re both very active

So I needed something to keep them in their spots because it’s also very hectic having a lot of money run around on your children’s heads. I’ve tried nearly every single retention method you could possibly figure out to keep them on their heads.

Do you have, and I haven’t looked through your Instagram enough to see, do you have like, um, shopping links or anything on there?

So if anyone’s looking for that type of thing where they can see where you’ve gotten what you’re using.

Yeah, I have an Amazon storefront that has a cochlear implant accessory, um, kind of list. On one spot. And I’m really good too, about, um, if somebody messaged me wanting a link, a lot of them are from Etsy or the Cochlear store, um, itself.

I’m good about sending those over too. So,

Oh, good, good. Yeah, so those that are listening, um, in the notes for this episode, we’ll put her Instagram, but, um, but, you know, check, check it out. I, I would encourage you to see what she’s doing. She’s really posting a lot of really good content. If nothing else, that resource alone will be enough to know where things that you’ve already tried and tested, um, to know where, where to start if you’re, if you’re looking for something like this.

We talked about wearing the implant and kind of how that, how that works with the magnetic part. what was the process of adjusting to them and learning how to use them both for your kids and for you too? Cuz at this point, you were learning. Not them as much.

Yeah, so I would say in the beginning, um, with Silas and Isaiah, but although with Isaiah I had already done it once, so I knew what to expect, um, the process. , keeping them on their heads, um, trying to figure out what the difference between them needing a listening break and it becoming a game. Because eventually, if they know that you’re reacting to them, pulling them off of their heads, they’re gonna keep doing it just to get your reaction.

And then on the other side of that, the listening fatigue that comes along with constantly processing, um, is a lot. It’s overstimulating, especially for a baby, basically, um, to have to learn how to do that. So, Juggling that, trying to figure out, you know, what’s just the wanting a reaction, what’s actually listening fatigue, and then the care that goes along with it as far as like putting ’em in the dry kits at night, making sure their implant site isn’t getting infected and rubbing the, you know, vitamin E oil on it.

(Created on Canva with data from
https://www.psha.org/member-center/pdfs/LingSixSound6.pdf)Making sure that they’re hearing you. So doing the, the proper ling six sounds every day, um, where it’s like, I don’t know if you want me to go through and do them, but, uh, there are six sounds that you practice with your kids every day to make sure they have access to all of the speech sounds. Um, oh, just kind of.

all of the things that come along with it. And then charging them, you know, replacing batteries, making sure you have batteries in stock, you’re not going to run out. Uh, making sure that every night they go on the charge or just that kind of thing. Um, it was a lot to get used to. And then when Isaiah was born and he had his implantation surgery, it doubled

Right, right. So where the outer piece is attaching to the internal part, where the magnet is, did you have any trouble with hair loss in those areas?

Yeah, so the magnetic spot, um, where the magnet sits on their head, Silas has actually had a little bit of hair loss there.

More so from, we used to use clips. Hair clips. and, um, he would rub his head and try to like, uh, he wasn’t trying, but they would pull his hair so he would have big bald spots where the clips were. Right. The magnets not so much themselves, but I do notice that it’s easier to keep the magnets attached when that part of his head is shaved.

Just a little bit shorter than everything else.

You’ve mentioned a few little things there. Are there any other concerns or risks that are associated with the implants that, that you’ve had to think?

Well, like any technology, you have the risk of it failing or something going wrong with the internal piece.

Um, technology’s not forever, and that’s why I don’t necessarily a hundred percent rely on their technology for them to communicate. That’s why we use ASL, lipreading, a total communication approach. Um, but there are, so say the boys were to get a hearing or an ear infection, there is risk there if the ear infection is not cleared up right away.

It could possibly go to the implant site causing, you know, a worse infection or meningitis. They do have a higher risk of meningitis because of where the implant sits at. Okay. Um, there is the risk of needing an explant because of infection. So say down the road, Silas gets hit in the head with a baseball, God forbid, and there is actually a cut there, um, that can cause an infection and they would have to actually take the implant out and re-implant somewhere else in a different location. Um, so there, there are obviously risks as with anything, um, very rarely, knock on wood, do they happen, but they, I have heard of cases where, you know, I don’t wanna speak for every cochlear implant mom or user because there are situations that bad things can.

Right. Will there be, um, like will they, will they need to have any type of at restrictions in sports and things or will they be able to participate as much as they want.

They will be able to participate as much as they want. Um, I believe the only thing that they aren’t able to do is dive a certain amount of feet under water. Like nothing, like in a pool would even be, but like way like deep sea diving. I’m not sure the, the exact, um, number there. But as far as sports, you know, I would prefer they not play football . Um, I would definitely prefer that I’m going to be putting Silas in some tee-ball and some, uh, golf lessons and some drum lessons, but I, I’m going to let them do whatever they want to do. Cause I’ve always told them, you know, you’re capable of doing whatever you want to do, but we’ll see.

Join us next week for the rest of Felicia’s story of how cochlear implants have opened options for her children and some of the decisions her family will need to make in the next few years about education and advocacy.

You don’t want to miss the valuable information she shares for parents facing a similar diagnosis, as well as tips for anyone communicating with someone who is deaf.

This podcast is made possible by support from our listeners. If you wanna help offset the cost of producing the Water Prairie Chronicles, become a supporter at https://buymeacoffee.com/waterprairie.

You’ve been listening to the Water Prairie Chronicles, a podcast created to encourage and support parents of special needs children. I’m glad you were able to join us today, and I hope to see you back next week for another episode of the Water Prairie Chronicles.

Meet Today’s Guest:

Felicia Aquilo is the proud mother of Silas and Isaiah, 2 boys who were born profoundly deaf and have received bilateral cochlear implants. Felicia and her husband, Steve, are raising the boys by teaching them to speak and to use sign language. They are hearing parents, but they are doing an awesome job of learning the skills they need to make communication easy for their sons! Felicia is active on Instagram and can be found @feliciaaquilo.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

A Peek Into the World of Online Speech Therapy with Lenora EdwardsShow Notes:Meet Lenora Edwards, Chief Knowledge Officer for Better Speech – a revolutionary online speech therapy company dedicated to helping children use language effectively! Lenora has years of experience when it comes to analyzing the differences between analytic language processors and gestalt language processors. In this interview, she reveals her expertise on the matter, as well as a fascinating look into echolalia – or “echo speech.” Tune in to find out more about Lenora’s journey in providing quality speech therapy options for children and to get an insider’s perspective on these different types of language processors.

She had a baking business.
She hiked the Appalachian trail.
She hiked the Tour du Mont Blanc.

*** We’ll post the answer on our Instagram and Twitter account a week after this video posts so go there and check to see if you got it right!

https://www.instagram.com/water.prairie/

https://www.twitter.com/waterprairie

Lenora’s Contact information:

Website: https://www.betterspeech.com/
Facebook: https://www.facebook.com/yourbetterspeech/
TikTok: https://www.tiktok.com/@better.speech
Instagram: https://www.instagram.com/betterspeech/
Linked In: https://www.linkedin.com/company/better-speech/mycompany/
YouTube: https://www.youtube.com/c/BetterSpeechVideo

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Episode #47: Analytic vs Gestalt Language Processing with Lenora EdwardsA Peek Into the World of Online Speech Therapy###### (Recorded December 28, 2022)

Recently I had the chance to speak with Lenora Edwards. Lenora has years of experience as a speech and language pathologist, and in this interview, she reveals her expertise on the matter as well as a fascinating look into analytic and gestalt language processors.

Welcome back to the Water Prairie Chronicles everyone. We appreciate you being with us today, and we have a special guest. I am talking today with Lenora Edwards. She’s the Chief Knowledge Officer with Better Speech, an online speech therapy company, and we’re gonna tell you a little bit more about that, but Lenora is an ASHA board-certified speech-language pathologist.

That’s a lot to say in one phrase. Since 2010, she’s been working with individuals of all ages, starting with our youngest learners, and that’s where we’re gonna focus a little bit today. And Lenora, welcome to the Water Prairie Chronicles.

It is so great to spend time here with you today. Tonya, thank you so much for having me. I really appreciate it.

All right, so I gave you a general introduction, but can you tell us a little bit more about yourself?

Absolutely. So like you said, my name is Lenora Edwards and I am a board-certified speech-language pathologist and A S H A, it’s the American Speech Language Hearing Association.

And with that indicates, is. As a board-certified clinician, I have had the proper education and I have passed my boards, and therefore I’m certified by the board within the United States. That being said, I then have the ability to be licensed in states. So really, I am licensed in the state of Pennsylvania, and I live in Pennsylvania, but I’m also licensed in four other states.

Because I have the ability to work online, I can apply for licensure in those other states. So that allows us to provide speech therapy services, especially online throughout the US because I can be on my computer, but I have clients in Colorado and clients in South Carolina. So it’s really fantastic that we have the ability and the technology to do that.

Today we’re gonna be talking about the speech development is such a large. Range of topics, um, that I’ve asked Lenora to talk with me a little bit about just speech development today. Thinking of our younger, I wouldn’t say patients, but our younger learners really because they all have to start learning at some point to communicate.

So I’ve asked if we can touch on some of the differences in how people process language, and so we’re gonna get into that in just a minute. But to change things up a little bit, for season two, we’ve decided that we’re gonna start by playing a game instead of waiting till the end. So season one, if you’ve listened through that, we did a speed round.

This is season two now. So we’re going to do a game called “Two Truths and a Lie.” So if you’ve ever done an icebreaker in a large group, you may have done this before, but what we’re asking each guest to do is to share two truths about themselves and then one lie. And we want those that are listening to try to discern which is the lie.

Go to Instagram @water.prairie or Twitter @waterprairie to post your guess and check to see if you’re correct.And those that are listening, you can put a comment if you’re watching the YouTube channel, you can make a comment below the YouTube video or you can go to our Instagram @water.prairie and we’ll post the 3 choices there so you can choose which one, and we will eventually release the answer.

We wanna give you a little bit of time to talk about it first. So Lenora, what are your two truths and a lie? And mix them up so we don’t know which one is which.

Okay. My two truths and a lie. Uh, one, I had a baking business. Two, I hiked the Appalachian Trail, and three, I hiked the Tour du Mont Blanc. So there are two truths and a lie.

Hmm. Okay. We will be posting those on YouTube and on Instagram. So I wanna see some conversation. Those that are listening, go and find it. And if you wanna see if you’re right or not, check back again later to see what our answer is. And remind me to ask what the answer is before we finish this, because I may forget that part.

To start out with, I’ve seen some terms about analytic language processors, and gestalt language processors. Echolalia, I think is how you say it. Can we start with just what is an analytic language processor and what’s maybe an example of what that would look like?

Absolutely. So I’m gonna rewind before I get to that.

When it comes to language development, and you know, a lot of the time people will tell me like, “oh, we’re expecting,” and I’m like, great. Start talking. Because language starts developing immediately and it does develop in the womb. So it’s really important that as that little baby is growing throughout that timeframe to keep talking because they are picking up information.

Once that blessed day arrives and they’re finally here in your arms to keep talking. We are actually born with the ability to understand language. That being said, there has to be language input for us to make cohesive sense of it. So our brain, we are equipped for that language, part of the brain to understand language.

But like I said, language has to come in. Now when it comes to language, and as a speech-language pathologist, people often think, oh, we only work with articulation. “Oh, there’s nothing wrong with my speech. I speak fine.” And that is true, but there’s much more that we do. So when it comes to language development, there are two parts.

There’s our ability to understand language. So everything that you and your listeners are doing right now, that is the receptive part of language, you’re understanding the information that I’m saying. Then it comes to expressive language. Everything that I’m doing and how I’m stringing my sentences together in the grammatical formation I’m choosing is the expressive component of language.

So that does develop and it really starts developing as early as the womb. So it’s important, the understanding of language, it’s important for them to have language going on in their environment. And we often say, you know, to new parents, “talk, narrate, tell them what you’re doing,” whether you wanna call it sportscasting or narrating or just talking, whatever label you wanna give it.

As your little one is developing, they’re listening. So the more that you talk to them, the more vocabulary and the more information you are giving them. So when you pick them up out of the crib and when you lay them down to change their diaper, keep talking about what you’re doing and say what you’re doing and why you’re doing it. And to keep singing and to keep engaging with them socially because that social attention, that joint attention, that interaction is so important for our communication, and these are foundational things for our communication development.

When it comes to very specific, you asked about analytical and gestalt language processing. Also Echolalia. So when it comes to analytical language, they used to think back in the day that we only developed language in this one way and it was just one word at a time and it would build upon itself. We’ve now after I think some 40 years ago, researchers came up with also, we’re actually understanding it in two ways.

Gestalt Language Processors learn language “as a whole!”We have the analytical development. Or the Gestalt language processing, in which case Gestalt means “as a whole.” So some children develop language in their understanding of language in scripts, in chunks of information. So, such as, “let’s go to the store.” If they heard it on a TV show or if they heard somebody say it, they’ll repeat it. They’ll echo that entire phrase.

For the analytical, they’ll come out with “go,” and then it’ll be, “let’s go,” and then it’ll be “to,” “let’s go to.” And as you can see, it went from one word at “go.” “Let’s go” to two words, and “let’s go to” at three words. So that continues to build that building up from 1, 2, 3 is the analytical language development.

When it comes to gestalt, you’re getting that chunk of information and the reverse basically happens. So children will come up with this script or this phrase that they’ve caught and are repeating. Then they have to chunk downwards. They have to mix and match and understand these combinations to create intentional communication.

So there is definitely a difference when it comes to that. When it comes to echolalia, they’re repeating and there is a very normal development that your child should be repeating because children learn through experience. They learn through you modeling. So as you are saying things, they’re working to model you.

“They’re working to echo you.”They’re working to echo you. That’s a good thing. When it starts to get beyond two years, and it’s still quite persistent, that is an indicator that you would wanna reach out to a speech-language pathologist and really have your child assessed to see what else is going on for their language development and how else they may be able to be cared for if there are services that may need to be provided.

So thinking back to when my children were young. They would’ve been analytic language processors because they started with one word, maybe two. And it would be like, you would hear them say, you know, “go,” they would get first, but then they would maybe, you know, “go home.” “Go play.”

They’d add the action or the destination to it. And then it would add some other descriptive words with that. So that’s the analytic part of it. And then recently I ran into a young adult who was communicating with me, but as she was talking, I was hearing phrases that I’d heard from a baking show that I’d watched.

Another one from an animated movie that I’d seen all in the same sentence. The phrases were in there. so that would be an older person who is still using the Gestalt, is that right? Or would that be the echo?

It would still be echolalic because they’re repeating something, but also they’re producing a phrase and it’s important to remember that when children or adults when they are doing this, this is them communicating. This is a great thing and it should be acknowledged and validated. You know, years ago, especially, we really didn’t have a lot of information on how to properly treat this. And thankfully, with advancements in our own education and our own skillset and development of the world, we now have great tools to really help children and other people to take this skill, but to also harness it in a way that’s effective. So we’re not saying “No, be quiet. Don’t say that.” We’re saying, “oh, okay. I understand you want something.” And then also what we’re doing is offering additional vocabulary to support it, cause sometimes they’re wanting, clearly they’ve now said a phrase, they’ve now said a, a script.

They are wanting to communicate and it’s up to us as the listeners to validate it, but to also indicate that we’re understanding you and to really work to have that back and forth of understanding information. So that’s really important that we then also offer alternative scripts rather than saying, “no, no, don’t say that.”

Or you know, let’s say, “good job Johnny. Good job Johnny. Good job Johnny. Good job Johnny.” We can say “good job, Johnny,” and then what we’ll also indicate to recommend to families and you know, people who are interacting with these other individuals is talk in the third person. “I did a good job.” So that way they’re using functional language. Now they’re not talking in the third person from what you said, and to really go back and forth of, “no, you say this,” “I say this,” “you say this.”

“When we offer that third-person model, … we’ve given them more tools, … and that person is able to then understand.” Lenora EdwardsThat can be very confusing. So when we offer that third-person model, “I did a good job.” Then they’re using it appropriately. We’ve given them more tools. ‘”I did a good job.” We’re now indicating we’re showing visually what we’re expressing. “I did a good job. I did that on paper.” And that person is able to then understand, but also to have effective and intentional communication.

So in a younger child who is starting in that role, about what age would you see those longer phrases like, “I did a good job?” Would that be around age three or four? That they’re repeating as long of a phrase as that?

And when they’re developing in that gestalt component, at that whole piece of information or that script, we’re hearing more words.

Sometimes it might just be, “wow.” Which is one word, but it’s a statement. It’s clear. And other times it might be, “let’s go to the store.” “Let’s go to the store.” And they may be looking at something, but also saying a phrase that they’ve heard multiple times. So now we’re trying to offer new vocabulary. When you do that, if they’re pointing to something, let’s say, um, “Super fast red car,” “super fast red car,” and they’re seeing a red car, but they want to play with the toy. We’ll take that pattern that they’re using, we’ll take that variation of their voice and how they’re saying it. We’ll match it, but we’ll also then pair the new language in there. So, ” super fast red car.” “super fast red car.” “I want the red car,” “I want the super fast red car.” And that way you’re offering functional language “I want,” and you’re also matching it. So that way then they’re echoing, they’re gonna hear what you’re saying. And they’re gonna be able to produce it more effectively and more functionally.

So are they learning not just what the words are related to the object or whatever it is, but also the voice inflection so all of it comes together for them as a package?

It does, but when it’s a gestalt, they understand it chunked up, and then we have to chunk it down for them to get more specific.

So when they understand they may be using it appropriately. In that case, I gave a pretty close example. They may be using it appropriately, but they’re on their own intonation. They’re on their own rhythm and sound of what they’re hearing. It’s up to us to match that, to come in with new information, and then we can play with it once we have that connection of understanding. So that way, rather than saying, “no, slow down, say this,” it’s not as harsh, but it’s also really supportive and what they actually understand is “oh, this person understands me because they’re speaking in the same rhythm that I am. They’re using the same voice flexion,” and it’s much more of a match, and then we can go on together.

So when I first started looking at this, I equated it to learning a foreign language for me. Um, in one case, when I was in high school, I learned Latin and then French, so we started with the basic words and then we build onto that.

Hello World!So that would be that analytic language path. But then I was traveling for a while with an international company and I would be landed in a country where I didn’t know the language, and so I’m picking it up from hearing phrases and watching and learning, and the phrases began to make meaning, but the phrases were phrases because I couldn’t separate the words from them yet.

And so I would say that would probably be more the Gestalt type, even though that may not be my natural learning process. It was the only way I could learn that language.

Yeah. That, and you’re also getting submerged in it, especially because when you have foundational communication tools to begin with.

So your brain is working to piece this together, and not only are we hearing phrases, but now we’re hearing it in a context. So when we’re traveling or when we’re learning a second language, and you’re seeing somebody order ice cream, you are following that pattern of, “okay, this is what this means.”

This is how this shapes, you know, if you use some more generic terms and you don’t have a context, “oh, that’s good.” Well in what way? What are we talking about, “good?” You know, can we define it a little bit more? It’s a lot harder when you go and you travel and you learn another language.

You’re getting so submerged in that environment, which is a great thing because your neurons start to fire and wire in a more effective way, and you’re really coming in cohesively. You’ve now taken your physical body to a new place and it’s working to align with other people, and you’re watching this other language and then you’re picking up things that you did not even know that you were aware of.

But because you’re so immersed in it, your mirror neurons, all your neurons are just firing to really make cohesive sense of that environment.

So I wasn’t sure if that was a good comparison or not. It was just the best I could do to try to connect with it.

Good comparison. I like it.

Well cause then I was thinking, if I can think of it that way, then, when I’m talking to a four-year-old who’s at this stage maybe I can understand a little bit more because they’re coming into our world now. And, and they don’t have the benefit of being an adult with a full language vocabulary, even in another language but they still have a lot inside that they want to say and communicate. We’re trying to find ways to do it.

Absolutely, especially when little ones come in, I often tell people they have no idea what’s going on. They don’t know a wall, they don’t know a pen, they don’t know a ball.

“It’s up to us to explain this entire world to them, and little ones, they are so, so smart.” Lenora EdwardsIt’s up to us to explain this entire world to them, and little ones, they are so, so smart, especially because their brain is really developing at a phenomenal rate, and it’s working so hard to make sense of this world and to make sense of language and to really, you know, um, piece things together so, so much.

It’s extraordinary how brains develop, especially in those first 5, 6, and 7 years. Absolutely astounding.

So is there an age that if a child is not being helped to learn to communicate, so if they’re not an analytic learner and they’re kind of being overlooked for a while, is there an age where it’s hard to go back and regroup and to continue?

Or can they always be picked up and caught up again?

I would say depends on the child, depending on where they are and what’s going on. That being said, if there is a concern that their language is not developing, it’s not that we can’t go back and it’s not that they can’t develop. The first and foremost is to have them assessed by a professional to determine where they are on the formal scales that we use, using our formal assessments, but also what else?

Using our informal assessments. How are they interacting with peers? How are they interacting in the home? You know? Let’s say you have a three-and-a-half-year-old and they’re now in daycare. Okay. Well, and the provider is having some concerns that they’re not interacting quite as much and they’re expressing that to the parent as the parent is saying.

“Oh, okay. I’m not too sure.” One of the great things about Better Speech is that you can come to our website, betterspeech.com, and we offer a free 15-minute consultation. So when that parent has questions and they’re not sure, I don’t know about you, but I roll over at 2:00 AM, and I got questions. I don’t have six months to wait to speak to a professional.

I have questions now. So as early as the next business, we’re able to connect with people and answer their questions. So say you’re three and a half year old, something’s going on. They’re repeating a lot. They’re, you know that they’re talking, but it’s not making a whole lot of sense. And now the teachers and caregivers are starting to really express concerns.

You can reach out to us at Better Speech, and also the really important thing is that you’re then able to provide speech therapy services to that child. It’s not a, “ah, well you missed the window. Sorry, kiddo.” It is an absolute yes. Speech therapy services will be beneficial to you. And it’s really important because we want that little one to be able to understand their environment.

Do you want apple juice or orange juice to drink? And do you wanna have pancakes or waffles? We want them to be able to make those decisions and to express what they wanna express. “I want the ball.” That’s really important to be able to tell people your wants and your needs, and it’s very imperative that we have those services for those children.

Whether they get provided by the school system or early intervention or through Better Speech, the most important thing is to be able to provide services to that little one.

I was hoping you would answer that way because in my mind it is never too late. You always have a chance to make someone’s life better.

Absolutely. I completely agree. I don’t think I know anybody that would be like, “oh, sorry, you’re too late.”

So you kind of touched on my main questions here, but I did wanna go back to something that I think is important that we discuss. At what age should a parent be expecting to pick up on something if there is a concern? You know, at six months, there’s probably not a concern there, but is it 12 months?

Is it 18 months? We had said three, but you had mentioned two earlier too, so kind of clear that up for us.

“They’re listening all the time.” Lenora EdwardsSo when language starts, especially for little ones, as I said, they’re listening all the time. As their language, even though they don’t have their first words and they’re not talking, they are communicating.

Children communicate through their coos and their babbles and their laughs and their giggles and their cries. That is intentional communication. This is why you’ll often hear parents say, “oh, that’s not that cry, that’s this cry.” Because the child has now said, this is my cry for this and this is my cry for this.

And we as the caregivers and the parents of that child, understand that. They wanted us to know that, and now we understand it. We have it now. When they’re working to communicate, what you’ll often see is little ones will start to, as they were cooing, they’re now gonna start babbling.

We’ll often hear “ba, ba, ba, ba,” or when they’re laying in the crib or (buzzing sound with lips) they’re playing. That is a play. When they’re just drumming their lips. But when they start to use consonants and when they start to string vowels, “ah, ah, ah, e, e e,” that is their babbling play and they’re learning and they’re working to understand and to make sense of all this information that they’ve been hearing for so long.

And as your little one, typically by the first birthday will hear. One word. Those are general guidelines and there’s a lot of flexibility in those guidelines, but they’re still guidelines. So at one year old, you’re gonna start to hear one-word vocabulary. So as you get to two years, you’re gonna start to hear two-word combination vocabulary.

Three years, you’ll start to hear three-word vocabulary combinations. It might start out as “muh” for more, then you might hear, “more please,” that attempt to communicate. And then you’ll start to hear, “I want more.” That’s a progression. That’s an analytical development that we were talking about earlier.

That is very, very appropriate. So those are the guidelines for sure. If you’re not hearing your child babble, “bah, bah, bah, bee, bee, bee, boo boo.” Making those noises. If you’re not hearing your child, babble, in that, you know, 10, 12 months even it’s, or seven, eight months, if you’re not hearing those attempts at combinations, that’s a little interesting. Not necessarily they need to, they need speech therapy. You want to see this communication, this back and forth. So when you, let’s say you have your, um, eight-month-old and you’re sitting and you’re playing with a toy and they’re looking at a book and they’re looking and you wanna see them engaged in that book, and you’ll start to hear, “uh, uh,” as they’re attempting.

There are approximations, there are attempts to communicate, and that’s a really, really good thing. If you have a dog in the house and let’s call the dog Bo. If you’re not hearing “Bo Bo” an attempt at one-year-old, that’s a little concerning, but again, not massively. When it’s two years and you’re not hearing those things, those are concerning.

So we usually say that 18 to 24 months is that, if you’re not hearing, really start defining those words or “mom” or “baba,” those combinations. Those are definitely concerns, and if you ever have concerns, especially those 2:00 AM question marks, reach out to professionals and even if it’s for your own peace of mind, I’m very strong proponent of if you have a question, Absolutely speak with somebody and let that question be known, because that’s a really good thing.

People aren’t supposed to know, certain child language development. They’re not supposed to know these certain milestones if they didn’t have a child before. They’re now developing these skills. They’re developing this awareness, so if you don’t know, that’s okay. Ask. That’s why we’re here, and it’s so important to ask questions and to not feel stupid, a lot of the time they’ll warn me and they’ll say, I have a stupid question. I’m like, it’s not a stupid question. You wouldn’t know the answer. Why would you know? This is why we we’re having this interaction. This is a good thing. It’s not a stupid question. So I really try to allow people a lot of grace and understanding that it’s okay.

It’s a good thing to have a question by all means.

We’ve mentioned Better Speech a few times through this now, and you’ve talked about the free consultation if they had a question. Tell us a little bit more about exactly what is the company, the website, whatever you can tell us that the parents can benefit from knowing about this.

Absolutely. So Better Speech is an online speech therapy company. We are over 150 speech-language pathologists strong. We also all have at least 10 years’ experience. So for me personally, I’ve worked in the NICU, I’ve worked in the PICU, I’ve worked in inpatient outpatient therapy clinics.

I have experience. It’s not like I’m right out of college, which isn’t a bad thing for those who are right out of college, but some people want to know what other experiences you have. So we each have at least 10 years of experience, but also we are nationwide, so like I said earlier, I am licensed in Pennsylvania, but I’m also licensed in four other states.

And because we are online, we have the ability to provide speech therapy services throughout the entire US and then we are also internationally based. So we are able to provide online speech therapy services to so many people, and that’s a really big deal, especially when you live 45 minutes from a clinic or you have to wait six months to get on a waitlist to get an evaluation.

That’s a huge deal. We are able to match people as early as the next day with a clinician in their state so that they can receive speech therapy services. And that’s so important because especially with little ones and their development, time is of the essence. It’s truly, truly important.

So what is the website?

It is betterspeech.com. And we have all this fantastic social media. So come visit us there, and if anybody has questions, reach out to us at betterspeech.com or leave comments on our YouTube and our Instagram and our TikTok, and we will do our very best to answer any and all of your questions and provide you with as much care and service as we can.

Excellent. So those are listening. I’ll post the links to everything that she sent me. I have like eight different links there that I can put on and I’ll put them on the resource page on the website.

So just check the show notes and you’ll be able to get there for that. Is there anything that I didn’t ask you about that we should talk about?

We have an amazing practice library on our platform.

So what all is on there?

So on our Better Speech platform, when we have clients, we have people often ask, how do you do speech therapy online?

And it’s actually, we’ve been online since long before the pandemic. So we are very comfortable online, and we have this incredible platform where we have games that we help engage our clients with and the massive benefit of making it fun, cause learning happens, especially when it’s fun, is we are also able to then have them, that the family as a client, they’re able to log into their account, they’re able to see their progress and see all their notes, but they’re also able to play games and having your parent or guardian engage with you and play games while you’re having speech therapy and while you’re learning is so, so important because it really helps that child understand that they’re seen and that they’re heard and that they’re cared for and that this is important. Whereas if you go to an outpatient clinic, sometimes what can happen is, the parent and the child are getting separated, or at least in my state, they’re still in masks and shields so there’s other hindrances going on, but also in a school system, the parent isn’t able to be there with Better Speech, because we are online, we provide speech therapy services right in the comfort of your own home. And we get to work with parents and guardians one-on-one along with that child and explain what we’re doing and why we’re doing it.

And it’s so, so massively beneficial. And the gains these children make and gains adults make because we also provide adult speech therapy services is absolutely phenomenal.

Oh, I know what I wanted to ask you. On your website, and those that are listening, go and check out the website. They do have a list of price breakdowns of the types of services.

Does insurance cover any of those? So that’s your cash price?

We do accept insurance, but also what we provide people with is what we refer to as a superbill, which sounds so awesome. I love the name of it, but it’s a form that has your information on it. It also has our notes and it also has the information your insurance company wants.

for when you go and work with your insurance company to ensure that those services are provided. And that’s such a great thing because that way you can turn around and make sure that you are getting the proper coverage that you need from your insurance provider and that the information is there for them.

So they would file themselves?

I was impressed when I saw the prices and so for those that have never done an out-of-pocket type cost like this, you actually will be pleasantly surprised when you see what they have posted, but knowing that insurance also is a possibility may make it an affordable piece for them.

That is our goal, to be not only effective and not only convenient but to be incredibly affordable because it’s so important that people receive the proper care and the proper services at an affordable price.

Lenora, thank you for coming on today and sharing this information with us. I really appreciate you addressing my questions and just giving us the extra information about the company as well.

Thank you so much, Tonya, for letting me be here. It was so nice spending time with you.

Meet Today’s Guest:

Lenora Edwards is an ASHA Board Certified Speech Language Pathologist and Chief Knowledge Officer with Better Speech. Since obtaining her CCC’s in 2010, she has worked with individuals of all ages from little ones who are learning to understand and express themselves to adults who want to improve their speaking skills and become more fluent and effective communicators. Lenora loves to teach and educate others so if you have questions, please don’t hesitate to ask.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

The NC ABLE Savings Program ExplainedShow Notes:Feeling overwhelmed by the costs of managing your child’s disability? Do you ever worry about how your child might have enough savings when they’re older? You’re not alone!

The NC ABLE program is making it easier for people with disabilities to achieve financial independence. Learn how your child can benefit from this awesome opportunity during this episode of the podcast. Kristen Merrick of the NC State Treasurer’s Office took a few minutes to chat with us during the NC State Fair Access ABILITY Day event a few months ago, and I wanted to share with you what I was able to learn about the NC ABLE program. It looks like it might be a great option for children with disabilities even if they don’t live in NC!

NC ABLE Website

National ABLE Alliance Website

IRS Webpage on ABLE programs

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Financial Security for Your Special Needs Child: The NC ABLE Savings Program Explained###### Last fall, I had the opportunity to attend the North Carolina State Fair Access ABILITY Day event and speak with some of the families who attended with their children. I’ll post those interviews later this week, but today I wanted to share a resource with you that I found out about during my visit to the fair.

Logo for NC ABLE program. Visit https://ncable.nc.gov for more information.###### When we arrived at the area where they were having the main activities, the first person that we saw was Kristen Merrick with the North Carolina State Treasurer’s Office. Kristen was handing out information about the NC ABLE program and took some time to talk with me and tell me more about it. I was not familiar with the ABLE Accounts or the ABLE Program, and I was hoping that maybe we could provide this as a resource for others who may not be familiar with it either.

Kristen was telling me about the North Carolina program, but this program is available throughout the US so even if you’re not in North Carolina, you may find value.

Kristen Merrick and Tonya Wollum at the 2022 NC State Fair Access ABILITY Day event.###### I met Kristen as soon as I arrived at the Access ABILITY Day event, and I wanted to share with you what I learned about the ABLE Program. We started out by having Kristen tell us about the NC ABLE program.

We have the NC ABLE program that’s sponsored by the State Treasurer’s Office. This program helps people who are diagnosed with the disability before the age of 26. It helps so that if you are getting any type of federal government help or state help, you don’t have to worry about spending that money, that $2,000 that you’re restricted to, to have an asset.

Kristen went on to explain some of the benefits of the program, and this was where I was excited about the options families might not know about and why I decided to dedicate this episode to the ABLE Program.

Specifically, those different benefits, you don’t have to worry about losing those benefits. You can save up to $16,000 a year in this account and up to $250,000 for over a lifetime. This has helped people get cars. This has helped students go to college, people to buy homes, also for an inheritance, so all kinds of stuff.

And also any kind of interest that’s gained in there is tax free whenever it comes out.

The last question that I asked was actually a collection of situations that I posed to find out if the funds for the ABLE accounts could be used for those different situations.

So a specific question for some of our families that I’ve talked to, if they have a child who needs like transportation to school and they don’t have funding for that, is there a way for them to divert some of their savings to that?

Absolutely.

Would that be a benefit that they could have?

Absolutely. They can also use any of this money. The whole point is for them to be able to keep the money and then to use it for what we call qualifying spending expenses. So that literally can go anywhere. Even if you have a service dog, it can help with their vet bills, it can help with any type of transportation. If you have a cell phone, it can help with a cell phone. And lawn equipment, anything that helps you with your day-to-day activities.

So a respite care for a parent with a child who’s medically fragile, would that come into that category?

Yep.

So those are questions that I get a lot, and I’m not sure where to point them to.

Yeah. Yeah. And also they can have an authorized user that can help the disabled person who’s opening up this account, and they can help them manage the money as well.

Okay, good. Yeah. So it could be used for the future adult life for this child that they’re raising.

Absolutely.

Excellent.

Absolutely. But the biggest thing that I just recently heard is there was a girl who was going to grad school and with her NC ABLE account, she was able to save enough money where she was able to help pay her own way through school because she had this account with us. So it was just an awesome story to hear because that was the first time I had ever heard it used for that.

Excellent. Well, I appreciate you taking a few minutes to talk with us today and to pass this on to our listeners.

Absolutely. Thank you so much for your interest.

After hearing about the NC ABLE savings program from Kristen, I looked at the IRS website and the NC ABLE website to see what else I could find out about the program.

I’ll post the links to the websites in the notes for this episode, but here’s a summary of what I learned.

The Achieving a Better Life Experience (ABLE) Act of 2014###### The Achieving a Better Life Experience Act of 2014 allowed states to offer what’s referred to as ABLE savings accounts according to the IRS. The ABLE Act of 2014 allows states to create tax advantage savings programs for eligible people with disabilities.

529A ABLE funds can be used to pay for qualified disability expenses and or tax free. The N C website states that able accounts have several benefits. Account holders are able to save and fund qualified disability expenses and still maintain their Medicaid, SSI, and other public supports. Starting in 2023, ABLE account owners can contribute up to $17,000 per year.

How to tell if you’re eligible for the NC ABLE savings program!###### How do you know if your child is eligible? First ask yourself, was their disability present before they were 26 years old?

And if so, then one of the following must also be true.

1) They need to be eligible for SSI or SSDI due to a disability.

2) Or they need to have been determined blind per the Social Security Act.

3) Or they need to have a written diagnosis for a severe disability from a licensed physician.

Some other important things to know about the accounts. This comes from the NC ABLE website, balances less than a hundred thousand dollars are excluded from your SSI resource limit. If you exceed the SSI resource limit, then your SSI benefits will be suspended until the account balance no longer exceeds your resource limit, and you’ll continue to be eligible for Medicaid regardless of your account balance.

So I said earlier that qualified disability expenses could be paid for with these funds, but what are qualified expenses? They’re defined as any expenses that are the result of living with a disability and are intended to improve your quality of life. So some examples, because I know that’s always easy to understand a little bit better.

A list of expenses the NC ABLE funds can be used for.###### Some of these might include education, health and wellness, housing, transportation, legal fees, financial management, employment training, and support, assistive technology. Personal support services, oversight and monitoring and funeral and burial expenses. So it’s important to know what happens when funds are used for non-qualified expenses.

The earnings portion of the withdrawal is treated as income and taxed at your tax rate. It is also subject to a 10% federal tax penalty and applicable state taxes. Not all states offer ABLE accounts, but you can still take advantage of this type of savings by working with one of the states that do offer the accounts. To see which states offer the ABLE accounts and get connected, visit https://savewithable.com.

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Overcoming Obstacles with Virtual RealityShow Notes:Join us as we learn more about how Virtual Reality rooms in schools can help children overcome challenges with social and emotional struggles. Ange Anderson has worked in the field of special education and used virtual reality with many children to help them overcome fears and help them feel more comfortable in everyday situations.

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Links:

*As an Amazon Associate, I may earn a small commission if you make a purchase after clicking these links. If you purchase anything on Amazon within 24 hours of clicking the link, Water Prairie might receive a small commission without it affecting the price you pay. This is an easy way to support the podcast!

Amazon Prime 30-Day Free Trial – https://amzn.to/3VUmlA4
Amazon Prime Student 6-Month Free Trial – https://amzn.to/3gygS1G
Audible Plus Free Trial – https://amzn.to/3sildZs

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Tonya
- @waterprairie
- @waterprairie
- @waterprairie
- Water Prairie Chronicles
- waterprairie.com
- @water.prairie
- Support Water Prairie

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Find the full directory at waterprairie.com/listen.

Information on Guide DogsShow Notes:Do you know what training is needed to get a guide dog? What’s the difference between a guide dog and a service dog, and how does a guide dog know where to go if their person is blind? Tonya and Ed McDaniel discuss these questions and many more as Ed shares his story of adopting Serina, his guide dog, and what he’s learned over the past year since he adopted her. Ed is a runner, and the guide dog school he worked with was able to accommodate his wish to find a dog who could run alongside him and allow him to continue his training schedule.

If you’re thinking about getting a guide dog for yourself or your older child, you’ll gain some insight into the process by hearing Ed’s story. Be sure to listen to the end for some advice he gives for those starting their journey to owning a guide dog!

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Links:

Amazon Prime 30-Day Free Trial – https://amzn.to/3VUmlA4
Amazon Prime Student 6-Month Free Trial – https://amzn.to/3gygS1G
Audible Plus Free Trial – https://amzn.to/3sildZs

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Books on Disability and Inclusion

Show Notes:

This special collaboration of children’s literature authors features childrens books about disabilities and inclusion. This collection of books about disabilities for kids will be a great asset to any child’s personal library, but it is also a wonderful list of books to give to teachers for their classroom library.

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Books mentioned in this episode:

Author: Alethea Allen

Alley: I Have Albinism - https://amzn.to/3gpZEnG

Author: Krystle Boateng

Bedtime, Sleep Time, Nighttime, Dream Time - https://bit.ly/accessiblebedtimestory

*** Krystle Boateng was featured in Episode #31:

Episode #31: Accessible Children’s Literature – Low Vision Books for Young Children

Author: Kristin Faith Evans & Josiah Evans

Beth's Umbrella: Loving My Sister With Special Needs - https://disabilityparenting.com/ (FREE digital copy!)

Views From Our Shoes, by Donald Meyer – https://amzn.to/3u1F9Rx

*** Kristin Faith Evans was featured in Episodes #23 & #24:

Episode #23: Support for Caregivers of Special Needs Children

Episode #24: Successful School Breaks for Special Needs Kids

Author: Dr. Kristin Wegner

Brody the Lion: Sometimes I ROAR! - https://amzn.to/3TQv9Vr

Brody the Lion: I Can Do It, Yes I Can! - https://amzn.to/3tQeJSo

Brody the Lion: The Shopping Flip - https://amzn.to/3ES9YOQ

Brody the Lion Meets the Doc - https://amzn.to/3gpElTg

*** Dr. Wegner was featured in Episodes #16 & #17:

Episode #16: Autism Diagnosis & Intervention

Episode #17: Brody the Lion Books for Autistic Children and Sensory Kids

Author: Laura Caputo-Wickham

Fanny Crosby: The Girl Who Couldn’t See But Helped The World To Sing - https://amzn.to/3i3KPHF

Author: Gea Meijering

Hacking the Code: The Ziggety Zaggety Road of a Dyslexic Kid - https://amzn.to/3Eq1OLW

Author: Amanda Owen

Owen the Wonderer and the Great Park Adventure - https://piecesofme.org/owen-the-wonderer/

Owen the Wonderer and the New Kid in Class - https://piecesofme.org/owen-the-wonderer/

Author: Margaret O’Hair & Sofia Sanchez

You Are Enough: A Book About Inclusion - https://amzn.to/3Or1qSb

Amazon Prime 30-Day Free Trial - https://amzn.to/3VUmlA4

Amazon Prime Student 6-Month Free Trial - https://amzn.to/3gygS1G

Audible Plus Free Trial - https://amzn.to/3sildZs

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Hacking the Code: The Ziggety Zaggety Road of a Dyslexic Kid

View Details

How does NF2 change your life?

Show Notes:

Peter Burton joins the podcast today to discuss how neurofibromatosis type 2 has changed his life. Peter openly shares his advice for someone going deaf as he talks about what happens when you go deaf. This honest conversation covers questions such as should you disclose you are deaf on a job applications, deaf accommodations at work, and what tools help the deaf communicate with the hearing.

Peter encourages listeners to try to communicate with those who are deaf by learning some simple signs to start the conversation and then shares his favorite app he uses, Live Transcribe. In fact, it was through this app that he and Tonya were first able to communicate when they met.

Contact Peter: Send email to info@waterprairie.com with "PETER" in the subject line, and we'll forward it to him for you.

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Resources for the Deaf:

American Society for Deaf Children: https://deafchildren.org/

Information for Deaf College Students: https://bit.ly/DeafCollegeGuide

Items mentioned in this episode:

Live Transcribe - app for smart phones (free for Andriod users)

https://amzn.to/3Grm9TP – Flashing Doorbell for the Deaf

https://amzn.to/3V5IV8L – Sonic Bomb Dual Extra Loud Alarm Clock with Bed Shaker

Amazon Prime 30-Day Free Trial - https://amzn.to/3VUmlA4

Amazon Prime Student 6-Month Free Trial - https://amzn.to/3gygS1G

Audible Plus Free Trial - https://amzn.to/3sildZs

https://amzn.to/3tIvgHZ - American Sign Language for Beginners book

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Sonic Bomb Dual Extra Loud Alarm Clock with Bed Shaker, Black | Sonic Alert Vibrating Alarm Clock Heavy Sleepers, Battery Backup | Wake with a Shake

View Details

Show Notes:

Did you know your premature baby can communicate with you? How do you know if your toddler should be talking yet? Do only young children develop a stutter? Why would a speech-language pathologist work with an adult?

In this episode of the Water Prairie Chronicles, Tonya interviews Jackie Gradnigo, a Speech-Language Pathologist in Louisiana, about her job as an SLP and how she works with babies in the NICU across the ages to seniors living in a care facility. Jackie’s upbeat personality shines through as she shares about the work she loves as a speech specialist.

Links mentioned in this episode:

Jackie’s Facebook

Kenya's podcast episode #33 on Childhood Narcolepsy

Ariel’s podcast episode #40 on Dyslexia

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Amazon Shopping Ideas for children with speech delays:

Amazon Prime 30-Day Free Trial - https://amzn.to/3VUmlA4

Amazon Prime Student 6-Month Free Trial - https://amzn.to/3gygS1G

Audible Plus Free Trial - https://amzn.to/3sildZs

My children loved LeapFrog Learning Toys like these:

LeapFrog Learning Friends 100 Words book - https://amzn.to/3sWPei2

LeapFrog LeapStart Preschool Success learning system - https://amzn.to/3T4Ytaj

LeapFrog DVD collection - https://amzn.to/3UqlOEz

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

LeapFrog Learning Friends 100 Words Book (Frustration Free Packaging), Green

View Details

Show Notes:

Ariel was a 6th-grade student who began to show signs of struggling with her schoolwork. When her mother took her to be evaluated for learning differences, she was told her daughter would not be able to complete regular school graduation and to plan for her to follow an alternative educational path. In today’s episode of the Water Prairie Chronicles, Ariel tells her own story of how Dyslexia hasn’t stopped her from achieving her goals in life. When asked what she would tell the doctor she saw in sixth grade, she responded enthusiastically, “Look at me now!”

Listen in on Ariel’s story of how her mother made a huge impact on how she approached her learning challenges, how specific teachers left a positive impact on her life, and what she’s doing as an adult with dyslexia. You’ll be inspired by how this young woman faced the devastating diagnosis of her doctor with determination to believe the words her mother told her and not to let the negativity hold her back!

Links mentioned in this episode:

Ariel's Instagram: @mermaid_capri

Kenya's podcast episode #33 on Childhood Narcolepsy:

https://youtu.be/6gCdfh4N9ns

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Shopping Ideas for Dyslexic Students and Adults:

Amazon Prime 30-Day Free Trial - https://amzn.to/3VUmlA4 Amazon Prime Student 6-Month Free Trial - https://amzn.to/3gygS1G Graph Paper - https://amzn.to/3z5d0fj Echo Smart Pen - https://amzn.to/3BWqHNI Echo Smart Pen notebooks - https://amzn.to/35p6Iel Audible Plus Free Trial - https://amzn.to/3sildZs

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Show Notes:

The state fair is always a fun time no matter what state you live in, but for families with children with disabilities, it isn’t always an option. The NC State Fair has created a special day where they have created a more sensory-friendly environment for fairgoers called their Access ABILITY Day where they’ve modified some of the noise and lights as well as provided space for quieter activities.

This episode of the podcast is devoted to bringing you a guide to the NC State Fair for special needs families. We interviewed Heather Overton, the Assistant Director of Public Affairs at the N.C. Department of Agriculture and Consumer Services. Heather shares some inside tips on how to make the most of your visit to the NC State Fair including dates, times, parking, handicap parking, senior citizens discounts, food, activities, tickets, and much more!

We focused the second half of the interview on the NC Fair’s Access ABILITY Day for families with special needs children. Heather gives us all the details of what to expect, what time to arrive, and where you can go if you need to find a quiet spot for your child to calm down if they get too excited with all the activity. The modifications they are making in the sounds and lights will be appreciated by those who are able to attend during the Access ABILITY Day, and Heather told us about some of the special competitions that they have planned.

If you attend this year’s Access ABILITY Day, we’d love to hear about your visit! Let us know in the comments below or on our Instagram account @water.prairie, and share your photos too! If you’re in another state, let us know if your state is offering more sensory-friendly options at the state fair this year, and we’ll see if we can feature more like this from around the US.

Links mentioned in this episode:

NC State Fair Website: https://www.ncstatefair.org

NC State Fair map:https://www.ncstatefair.org/2022/Visitor/documents/2022NCStateFairMap8.5x11.pdf

Daily Schedules: https://www.ncstatefair.org/2022/Visitor/documents/PrintableDailySchedule.pdf

Access ABILITY Day Guide: https://www.ncstatefair.org/2022/Visitor/documents/NCSF22_accessABILITY_Programforweb.pdf Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Show Notes:

Parents of deaf and hard of hearing children have concerns about their children’s safety both when they are young and when they’re older. Cindy and Heather Phillips join us again in this episode to talk about life after high school. They both share advice for deaf students, parents of deaf children, and teachers who work with deaf students.

If you missed the first part of the interview, be sure to go back to Episode #36 () and learn about Heather’s diagnosis, the early years of parenting a deaf child, and how Heather navigated school challenges.

Be sure to check out some of the links below. I’ve included a great resource for parents and students who are looking at college or are already college students, and I’d like to thank Intelligent for providing us with the link to this resource for deaf students! There is also a link to an organization Cindy recommends for parents of deaf and hard-of-hearing children.

Contact Cindy and Heather through Facebook or send them an email at info@waterprairie.com, and I’ll forward it to them. Cindy’s Facebook: https://www.facebook.com/cindy.brownphillips.7 Heather’s Facebook: https://www.facebook.com/heather.phillips.35325

Resources for the Deaf: American Society for Deaf Children: https://deafchildren.org/ Information for Deaf College Students: https://bit.ly/DeafCollegeGuide

Alarm Clocks for Deaf and Hard of Hearing: * I am an Amazon Associate and may benefit if you use these links.

https://amzn.to/3M7025O - Super Loud Alarm Clock with Bed Shaker https://amzn.to/3M4ASVy - Extra Loud Vibrating Alarm Clock with Bed Shaker https://amzn.to/3V5IV8L - Sonic Bomb Dual Extra Loud Alarm Clock with Bed Shaker

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Show Notes:

If you’ve been following the podcast, you met Cindy and Heather Phillips in episode #36, and we’ll continue their interview in episode #38. If you’re new to the podcast, welcome!

I wanted to share a story about what happened after I interviewed Cindy and Heather. I don’t want to give away the rest of their story, but Heather shared something during the 2nd half of the interview that made me think more about how I communicate with people who are deaf or hard of hearing that I meet.

The day after the interview, I was at work and had a customer indicate to me that he was deaf. He had a question, and between us we were able to figure out the question and the answer by using hand gestures and facial expressions. I walked away knowing I had not been able to give him the same service as I could have given someone who could hear me.

During this short podcast episode, I explain how this combination of events has already helped others communicate, and I hope it inspires you to find ways to communicate with those whose path you cross.

The app I mentioned in the podcast is the LIVE TRANSCRIBE app and is only for Android phones.

Resources for the Deaf:

American Society for Deaf Children: https://deafchildren.org/

Information for Deaf College Students: https://bit.ly/DeafCollegeGuide

Instagram: @water.prairie

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Show Notes:

Do you know how to tell if your baby is deaf? Do you know what questions you should be asking your doctor? Our guests today are a mother-daughter duo, Cindy and Heather Phillips, who join us to talk about how Cindy and her husband have raised 2 deaf children and some of the decisions they’ve made to help their children become successful adults.

This is the first of a 2-part interview. During this part of the interview, we concentrate on the early years of the children being diagnosed with hearing loss, starting school, school changes, school accommodations, friendships, support for parents, and some fun stories sprinkled throughout. The next part will be released in the first week of October 2022 and will include navigating college as a deaf student, living on campus, plans for the future, and current work challenges. I’ll post the link to the episode here once it is posted.

Resources for the Deaf: American Society for Deaf Children: https://deafchildren.org/ Information for Deaf College Students: https://bit.ly/DeafCollegeGuide

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Show Notes:

September 22 is World Narcolepsy Day

Let's join together and celebrate World Narcolepsy Day by learning a little about what narcolepsy is and how it affects those who live with it. After having the opportunity of interviewing 3 different people with narcolepsy this year, I've learned a lot about it and some of the challenges it presents. If you haven't heard those interviews, I'll list them below so you can hear the stories of Christopher, Julie, and Kenya.

If you're on Instagram, check out our posts today and comment on some of them to show your support for those living with narcolepsy!

Narcolepsy Episodes:

Christopher's Story: Episode #5 (Misunderstood Invisible Disabilities) & Episode #8 (Wake Up And Play Ball!)

Julie's Story: Episode #30 (Narcolepsy and Sleep Disorders)

Kenya's Story: Episode #33 (Childhood Narcolepsy)

Instagram: @water.prairie

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

What does a child with autism do after high school?

Show Notes:

Have you ever wondered what activities are available for a child with autism? Our guest today has a 20-year-old son with autism. Katia shares her journey of learning to parent a child with autism and how she made decisions throughout her son’s childhood starting with a disagreement with the doctor about a diagnosis and her son’s need for early intervention. Today, her son is a happy young adult who is involved in several different types of activities.

Send questions for Katia to info@waterprairie.com

Resources Mentioned in This Episode:Florida Scholarships for School: https://www.stepupforstudents.org/Dive Heart Foundation: https://diveheart.org/Flight Programs for Kids:Challenge Air: https://www.challengeair.com/Vital Flight: https://vitalflight.org/

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Show Notes:

Our guest during this interview is Kenya Gradnigo, a social worker and a member of the board for Project Sleep. Kenya shared information about being diagnosed with narcolepsy as a young child and some of the lessons she’s learned on how to manage life with narcolepsy.

Contact Project Sleep:

Kenya's Instagram: @unapologetically_ken

Project Sleep Website: https://project-sleep.com

Navigating College Toolkit: https://bit.ly/narcolepsyschool

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Disability Awareness

Show Notes:

Do you have a child with a disability? Have you ever thought about how others might view a disability? Can you tell your child how to explain their disability to their friends?

Our guest for this episode is Gabriella Tiberio, a teenager who has created what may be the best representation of disabilities we've seen! She may be young, but she understands what it means to make disabilities a part of who someone is and not the only characteristic that people see.

Join us for this interview and find out what brought Gabriella to write a children’s book about disability awareness and how it’s being used to speak out for children in their schools and how others are using it to teach their children how to understand why some people they meet might need special accommodations at times.

Contact Gabriella:

Instagram: @gabriellatiberiooOrder Mrs Jones's Wonderful Class(As an Amazon Associate, I may receive a commission if you make a purchase. This is a way you can help support the podcast!)

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

How would you feel if you wanted to share a bedtime story with your child, but the process was too difficult? Our guest today knows just how frustrating it is to read a children’s storybook when you can’t see the words on the page. The mother of 2 young boys, Krystle Boateng took it upon herself to find a way to share a bedtime story with her two young sons, and she's sharing her solution with the world!

Listen to this episode to hear Krystle's story of frustration in trying to find a way to simply hold her children on her lap and read them a bedtime story. Many take this for granted, but there are parents and grandparents who would love to experience this traditional bedtime routine. However, for those with vision loss, it is a challenge to find a way to hold a book with standard size print, read the words to your child, and also allow the child to see the pictures on the page. Krystle's frustration turned into an entrepreneurial mission and ended with her starting her own company and publishing her first book!

Contact Krystle:

Website: https://www.iabilitybooks.com/

Instagram: @inside_ability_books

How to order Bedtime, Sleep Time, Nighttime, Dreamtime, A Large Print Bedtime StoryStandard EditionReverse Contrast Edition

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Show Notes:

Our guest during this interview is Julie Flygare, the president and CEO of Project Sleep and host of the Project Sleep podcast. Julie shared information about narcolepsy and some of the exciting things that are happening through Project Sleep.

Some of the key information we discussed are the difference between type 1 narcolepsy and type 2 narcolepsy, cataplexy, current research for narcolepsy, and accommodations for students with narcolepsy.

Contact Project Sleep:

Website: https://project-sleep.com

Podcast: https://project-sleep.com/podcast/

Pediatric Narcolepsy Survey: https://project-sleep.com/wp-content/uploads/2021/10/Pediatric-Narcolepsy-Boston.pdf

Julie’s Book, Wide Awake and Dreaming: A Memoir of Narcolepsy: https://amzn.to/3wgE0H4

Genetic Marker for Narcolepsy: HLA-DBQ1*06:02More information on page 11: https://project-sleep.com/wp-content/uploads/2021/09/Science-of-Narcolepsy-Toolkit.pdf

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Wide Awake and Dreaming: A Memoir of Narcolepsy

View Details

Parenting a child with autism isn't easy, and adding homeschooling could make it more difficult. In this episode, you'll meet Fiorella Perkins. She is a “girl mom, homeschooling, autism advocate,” and she spends some time talking about how her daughter was diagnosed with autism just before the COVID-19 pandemic hit. Some of the challenges she faced in finding ways to help her daughter may not be the same today, but Fiorella has some creative ideas of how you can help support your child with autism.

Listen to her story and why she has become a strong voice that is helping thousands of other parents guide their children and support each other! This is the first of 2 interviews with Fiorella.

Be sure to join us for the second part of the interview to learn more about what she is doing to create a supportive environment for families who have children on the autism spectrum and how you can create the same where you live!

Contact Fiorella: @fiorella_perkins

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Johnny Kincaid is the child actor who plays Baby Jack on the NBC series This Is Us during the 2022 Final Season of the show. Johnny has albinism and nystagmus, and his mother, Marisol, is an advocate for visually impaired children. Marisol uses her Instagram account as a platform to teach others the importance of proper care for those with albinism and general information about different eye conditions.

This episode is the second half of an interview Marisol Kincaid gave on the Water Prairie Chronicles podcast to talk about parenting a child with albinism, Baby Jack on This Is Us, and how Johnny Kincaid got his first acting job on the NBC TV show. In this fun interview, listen in as Marisol and Tonya share their experiences in parenting a child with albinism and nystagmus and compare notes about raising their children. During the second part of the interview, Marisol shares how Johnny got started with acting and some of his experiences while filming.

Contact Marisol: @holdingsunshine on Instagram

More Information on Albinism: https://rarediseases.org/rare-diseases/oculocutaneous-albinism/

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie Thank you to our Super Fans: Praveen S.

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Johnny Kincaid is the child actor who plays Baby Jack on the NBC series This Is Us. Johnny has albinism and nystagmus, and his mother, Marisol, is an advocate for visually impaired children. Marisol uses her Instagram account as a platform to teach others the importance of proper care for those with albinism and general information about different eye conditions.

This is the first half of an interview Marisol Kincaid gave on the podcast to talk about parenting a child with albinism, Baby Jack on This Is Us, and how Johnny Kincaid got his first acting job on the NBC TV show, This Is Us. In this fun interview, listen in as Marisol and Tonya share their experiences in parenting a child with albinism and nystagmus and compare notes about raising their children.

Contact Marisol: @holdingsunshine on Instagram

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie More Information on Albinism: https://rarediseases.org/rare-diseases/oculocutaneous-albinism/

View Details

Show Notes:

Episode #26 marks the midway point in our first season of the Water Prairie Chronicles, and it seemed appropriate to do a little reflecting on what we've accomplished so far this season. This episode includes a sample of the interviews we've provided for you as a way to let you meet our guests and sample the different topics we've covered. It's been an exciting journey so far, and we can't wait to see who else we get to introduce to you in the coming months!

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Show Notes:

As a way of celebrating the first 25 episodes of the Water Prairie Chronicles podcast, we created this episode as a compilation of all the Speed Rounds from the guests featured in episodes 1 through 24. The podcast may feature guests who represent different types of disabilities and support for those living with disabilities, but we’ve found through the Speed Round portion of our interviews that we’re alike in many ways.

Listen through the responses to the 10 Speed Round questions and see who you can connect with and check out some of the books our guests have read recently from the list below. Tonya is an Amazon Associate and might receive a benefit if you click on the links, and any income received by using these links will go to help support the creation of the Water Prairie Chronicles podcast.

For a list of books mentioned during question 2 of the Speed Round, visit https://waterprairie.com/2022/07/22/episode25/.

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Show Notes:

Do breaks from school cause stress and anxiety for you or your child? In this episode of the Water Prairie Chronicles, Kristin Faith Evans continues her talk with Tonya about some of the techniques she uses to keep peace in the family during breaks from school and even on the weekends. Kristin is the author of the Special Needs Moms Blog, and this part of her interview was inspired by an article she posted on her blog.

See the blog post here: https://specialneedsmomsblog.com/how-to-maintain-structure-for-children-with-disabilities-over-summer-break/

This is the second episode of a 2-part series with Kristin, and we think you’ll enjoy meeting this author, speaker, mother, wife, and mental health specialist! Be sure to check out the first episode at: https://waterprairie.com/2022/07/01/support-for-caregivers-of-special-needs-children/

Kristin would love to hear from you! Connect with her through the Special Needs Moms Blog at specialneedsmomsblog.com and let her know you heard about her blog on the Water Prairie Chronicles!

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Show Notes:

Being a caregiver for special needs children is not an easy path, and our mission on the Water Prairie Chronicles is to come alongside disability families and give them support. In today’s episode, Kristin Faith Evans joins Tonya to share her story of being a medical mama and caregiver for special needs children. Kristin talks about how her journey began with her first child and how her parenting path changed after her second child entered the family.

This is the first episode of a 2-part series with Kristin, and we think you’ll enjoy meeting this author, speaker, mother, wife, and mental health specialist!

Kristin would love to hear from you! Connect with her through the Special Needs Moms Blog at specialneedsmomsblog.com and let her know you heard about her blog on the Water Prairie Chronicles!

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Show Notes:

Autistic Friendship: How to help your autistic child make friends

A popular search topic for autistic adults is, “How to make friends as an autistic person.” Many parents of autistic children want to find out how to help your autistic child make friends. Why is this a difficult topic to find help with?

In this episode of the Water Prairie Chronicles, Tonya talks with Praveen Sriram about the topic of “Autistic Friendship.” Praveen shares how his life was as a child and some of the tips he has found that help him make friends as an autistic adult. He’s found some creative ways to meet others even during the Covid 19 pandemic and has some suggestions for children and parents who are looking for help with how to find friends as an autistic person.

Questions for Praveen can be sent to info@waterprairie.com with “Episode 22" or "Friendship” in the subject line.

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Show Notes:

Have you ever wondered how do blind swimmers know to flip on their turns or how do blind swimmers know when to dive on relays? In this interview with Evan Wilkerson, Tonya learns about his journey of learning to swim as a blind athlete and what his goals are for the future. Evan shares some of the tips he’s learned about training in the pool when you can’t see the lines at the bottom of the pool and talks about what it takes to qualify for the Paralympics.

Questions for Evan can be sent to info@waterprairie.com with “Episode 21” in the subject line.

Connect with Us: https://linktr.ee/waterprairie Support this channel: https://www.buymeacoffee.com/waterprairie

Survive The Wild Video Game: http://www.samtupy.com/games/stw/

USA Swimming: https://www.usaswimming.org/

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

How can one encounter change your world? Meet Coach John, a volunteer coach for the Miracle League of the Triangle, and hear how one simple conversation changed his life and led to the start of the UB4ME Foundation.

In this episode, Tonya talks with John Davison, a volunteer with the Miracle League of the Triangle for over ten years. John tells what first brought him to the Miracle League and why he continues to volunteer with the organization. He also shares how that experience has led him to form the UB4ME Foundation to support other non-profit organizations as well as encourage more community support for the Miracle League.

If you’re looking for a Miracle League baseball program near you, see the links below for contacts with the National office of the Miracle League, and get connected as a player, coach, or volunteer. It will change your life!

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Contact John:

UB4MEFoundation.com

Miracle League of the Triangle (NC) Contact Information:

Website: Mltriangle.comYouTubeInstagram: @mlofthetriangleTwitter: @mlofthetraiangleFacebook: @MiracleLeagueOfTheTriangle

Find a Miracle League near you: https://www.miracleleague.com/find-a-miracle-league/

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Show Notes:

Hear the story about how the Miracle League of the Triangle in North Carolina got started and how you can start a program in your area.

In this episode, Tonya talks with Robin Rose, one of the co-founders of the Miracle League of the Triangle about some of the things he did to help get their program started. During the interview, Robin gives tips for others who might want to start a program.

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Miracle League of the Triangle (NC) Contact Information:

Website: Mltriangle.com

YouTube

Instagram: @mlofthetriangle

Twitter: @mlofthetraiangle

Facebook: @MiracleLeagueOfTheTriangle

Episode #19 Chapters:

00:00:00 Introduction

Photos used with permission from Miracle League of the Triangle and Cary Magazine.

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

The Miracle League of the Triangle

The Miracle League of the Triangle is a special place for kids with disabilities! This program of baseball for special needs children offers teams for kids from age 5-65 and has teams playing in Cary, Raleigh, and Durham, NC.

Join Tonya as she interviews Benjy Capps, the Executive Director of the Miracle League of the Triangle, and learn more about what Miracle League baseball is all about.

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Miracle League of the Triangle (NC) Contact Information:

Website: Mltriangle.com

YouTube

Instagram: @mlofthetriangle

Twitter: @mlofthetraiangle

Facebook: @MiracleLeagueOfTheTriangle

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Join Tonya as she interviews Benjy Capps, the Executive Director of the Miracle League of the Triangle, and learn more about what Miracle League baseball is all about.

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Miracle League of the Triangle (NC) Contact Information:

Website: Mltriangle.com

YouTube

Instagram: @mlofthetriangle

Twitter: @mlofthetraiangle

Facebook: @MiracleLeagueOfTheTriangle

Photos used with permission from Miracle League of the Triangle and Cary Magazine.

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Tonya continues her interview from last week's episode with Dr. Kristin Wegner, a clinical psychologist who works with autistic children along with children who may have other sensory needs to help them unlock the door and experience the world around them. During this part of the interview, Dr. Wegner introduces the Brody the Lion book series. The series of books for autistic children was written as a way to help any child who needs to prepare for change and may have difficulty when things don't go as they expected them to go and include a special section of tips for parents to help them teach their child and prepare them for different challenges they may face.

The Brody the Lion series is an excellent addition to your library for your child, and, after meeting Brody and watching this video, we think you'll want to get these books for your children and grandchildren! We've included the links below for anyone who wants to purchase through Amazon or Dr. Wegner's website.

If you missed Episode #16 with Dr. Wegner, you can find it HERE. She gave some fantastic tips for parents of young children on who to call if you think you see autistic traits in your child so you can get started with early interventions and help your child open the door to the world around them as well as how to know if the therapy you're starting will be a positive experience for your child.

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Brody the Lion Books: (As an Amazon Associate, I may receive a commission if you make a purchase. This is a way you can help support the podcast!)Sometimes I ROAR! - https://amzn.to/3OyeioYI Can Do it, Yes I can! - https://amzn.to/37HoDONThe Shopping Flip - https://amzn.to/3v5r8n6Meets the Doc - https://amzn.to/3k5L8zGGet a FREE 30 Day Trial for Kindle Unlimited! - https://amzn.to/3EErPqw

Dr. Wegner's Instagram: https://www.instagram.com/brody.the.lion/

Dr. Wegner's website: https://www.brodythelion.com/

Brody the Lion Shopping Page: https://brodythelion.shop/ (Books, plush animals, stickers, and book bundles are available)

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

In this episode of the Water Prairie Chronicles, Emily Wollum returns to give us an update on the Inclusive Sports Program she told us about in episode #2. Goalball is a new sport for her college recreational sports program and has been a great inclusive sports example for the students at the school Emily shares how the program worked out this Spring and some of the lessons she learned about running an inclusive sports program.

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Tonya speaks with Dr. Kristin Wegner, a clinical psychologist who works with autistic children along with children who may have other sensory needs to help them unlock the door and experience the world around them. During the interview, Dr. Wegner shares information about how early a child might show signs of being autistic, the difference between early ABA therapy and that being used today, tips for parents, and if an autistic child should have an IEP or a 504 plan.

This is the first half of the interview with Dr. Wegner, and the second half will be released in episode #17 where Dr. Wegner will introduce the Brody the Lion book series for parents of young autistic children. The books are a great tool for parents of all children to use to help their children prepare for changes in routines and new experiences. Be sure to watch episode #17!

Dr. Wegner's Instagram: https://www.instagram.com/brody.the.lion/

Dr. Wegner's website: https://www.brodythelion.com/

Brody the Lion Shopping Page: https://brodythelion.shop/ (Books, plush animals, stickers, and book bundles are available)

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Show Notes:

When you think of the word “autism,” what images come to mind for you? Do you think of the autism puzzle piece? Is there a symbol for autism that means something to you? Who was the first person with autism?

In this episode of the Water Prairie Chronicles, I’m going to talk about some of the more common symbols used to represent autism and the history and meaning behind them. To do this, we’ll also dig into the history of when autism was first diagnosed and some of the changes that have occurred in diagnosing autism over the last century.

Some of the references mentioned during this episode are listed below for you to explore on your own. These are listed in the order they are referenced during the episode:

Websites referenced: https://www.britannica.com/science/autism https://www.autisticempire.com/2018/07/30/so-you-think-the-mmr-jab-is-dangerous/ https://otsimo.com/en/history-of-autism-when-was-autism-first-diagnosed/ https://theplaceforchildrenwithautism.com/autism-blog/autisms-colors-symbols http://web.archive.org/web/20070714093137/http:/www.nas.org.uk/nas/jsp/polopoly.jsp?d=364&a=2183 https://studybreaks.com/thoughts/puzzle-piece-infinity-symbolas-a-symbol-for-autism/ https://goodautismschool.com/autism-symbol/ https://www.linkedin.com/pulse/awareness-pride-evolution-autism-symbols-from-1963-amber/?trk=articles_directory

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

April has been Autism Acceptance Month, and we continue our focus on autism-related topics by having an open discussion on stimming. Stimming is a word that stands for self-stimulation and is a behavior that is commonly associated with autism. In this episode, Justin Houcek from ASDwithME.com joins us again as we discuss the topic of stim behaviors and if they can be good or bad. Our focus this episode is to help parents of young children recognize the value stimming may give to their children and to know when they may need to step in and help redirect the behavior. As an autistic adult, Justin once again helps us break down the topic and understand it better. Contributions for this discussion were made by several Reddit members, and we’d like to thank DraconWolf2, littlemiddlemissy, lilisophieraris, and Maddybear167 for their comments about what stimming is for them. We’d like to thank Reddit user Abrab736 for providing the short video segment on his experience with stimming and his suggestions for parents of young children. We’d also like to thank Dr. Wegner, the author of the Brody the Lion books for young children, for allowing us to use one of her Instagram posts @Brody.The.Lion to help explain what stimming can look like, and we look forward to having her on the podcast in a couple of weeks to share more with us!

View Details

Are you a parent of a child with autism or another intellectual or developmental disability? Do you know what resources are in your community and available to help support your child?

In today’s episode, Tonya is speaking with Jennifer Pfaltzgraff, the executive director of the Arc of the Triangle in Raleigh, NC about the types of services they offer individuals with autism, cerebral palsy, Down Syndrome, and other intellectual and developmental disabilities. Jennifer’s son has cerebral palsy, and she talks about some of her experiences as a parent of a child with cerebral palsy and how that led her to become involved with her local Arc chapter.

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

In this episode of the Water Prairie Chronicles, Justin Houcek talks with Tonya about how autism has impacted his life and how he mentors others who have autism through his business, ASD With Me. Justin shares some good points on autism for parents, and how he’s advocating for individuals with invisible disabilities when he works with First Responders. Connect with Us: https://linktr.ee/waterprairie Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Do you ever feel overwhelmed by the IEP process?

In today’s episode, Nicole Schlechter talks with Tonya about parenting a child with a disability and how to start advocating for your child at school. Nicole is the owner of the IEP Parent Academy and has some tips for parents as they begin to navigate the IEP process as well as for those seasoned parents who need some pointers on how to advocate more effectively at school. She also answered some of our listeners’ specific questions about advocating for their child.

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

What is an orientation and mobility specialist, and what do they do?

How do you advocate for your visually impaired child?

Tonya learns the answers to these questions during her interview with Traci Wilkerson, a parent of two children who have a visual impairment. After becoming a mom to her children, Trace went back to school to expand her knowledge of how to help her children and started a new career as an orientation and mobility specialist.

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Show Notes:

Can a teenager with narcolepsy play NCAA sports?

In this episode, Tonya finishes her interview with Christopher as he talks about how he manages his study and training schedule at college. He also shares how he overcame a major setback during high school before joining a Division II NCAA baseball team and what role narcolepsy plays in his daily schedule.

Be sure to listen to more of Christopher's story in episodes 4 & 5:

Episode #4: Special Needs Siblings Episode #5: Misunderstood Invisible Disabilities

Connect with Us: https://linktr.ee/waterprairie Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Do you have a sensory sensitive child and feel like visiting a kids’ museum is too much stimulus for them? Join us on a visit to Marbles Kids Museum in Raleigh, NC to see what they’re offering to families who want a sensory friendly play option. Tonya discusses the museum’s accessible features for children with different types of disabilities and the special offerings offered to families who desire a quieter play time for their children with special needs.

In today’s episode, Hardin Engelhardt, the Vice President of Engagement at Marbles Kids’ Museum, talks with Tonya during a special Sensory Friendly Play event held at the museum.

Connect with Marbles Kids Museum:

Marbles Kids Museum websiteMarbles Kids Museum on YouTubeMarbles Instagram: @marblesraleigh

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Show Notes:

Have you ever wondered what it’s like to have your eyes dancing all the time?

In this episode of the Water Prairie Chronicles podcast, Tonya talks with Frankie Caputo, the creator of the Dancing Eyes Podcast, about growing up with congenital nystagmus. Frankie helps answer the question, what is nystagmus by sharing what his childhood was like, how he was treated by other students, and if he has needed to make modifications in how he does everyday activities. He also shares how he created his podcast and is meeting people all around the world who live with nystagmus.

Be sure to check out his podcast at https://www.youtube.com/dancingeyespodcast!

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

In this episode, Tonya continues her conversation from Episode #4 with our son, Christopher. He tells about being misunderstood by teachers and others because of the invisible disabilities he lives with.

If you have a child who is misunderstood, you’ll enjoy hearing Christopher speak about his experiences and how he was eventually diagnosed with dysgraphia, ADHD, and narcolepsy. He shares tips for parents and kids and the accommodations he’s used to help him succeed in school.

Christopher’s story isn’t over yet. In Episode #8, we’ll post the rest of his story about playing baseball in college and how he went through a difficult injury that almost put an end to his dreams of playing baseball. Make sure you subscribe to the channel so you don’t miss it!

View Details

In this episode, Tonya talks with our son, Christopher, about growing up with a sibling who has special needs. Christopher shares how his understanding of his sister’s disability has changed since he was young, and he talks about their relationship today as young adults. Next week, Christopher will continue his conversation with Tonya and share some of the challenges he has had personally and how they have impacted his desire to play baseball in college.

Next week, in Episode #5, Christopher will continue his conversation with Tonya and share some of the challenges he has had personally and how they have impacted his desire to play baseball in college.

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used:

“Your Intro” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

During this part of Episode #3, Olivia speaks to teachers who work with visually impaired students about how they can help their students in the classroom and help them become advocates for their own needs. She also describes her adventures at Space Camp, outdoor adventure camps, her other activities, and what she plans to do in the future.

In Part 1 of this episode, Olivia shared her memories of her younger years in school and gave tips for parents of what they might consider asking to include in their visually impaired child’s IEP at school and what they can do to help prepare their child for success in middle school and beyond.

Watch Part 1 of Episode #3: https://waterprairie.com/2022/02/11/leber-congenital-amaurosis/

Olivia’s Instagram: @O_Wilkerson04

Some of the topics covered during Olivia’s interview can be explored more below:

Braille Challenge: https://brailleinstitute.org/braille-challenge/about

SCIVIS Space Camp: http://www.scivis.org/index.htm

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie Music Used:

1) “Your Intro” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

In this video podcast, Tonya talks with Olivia Wilkerson about what it was like to grow up having a visual impairment caused by Leber Congenital Amaurosis, a rare genetic cause of childhood blindness. Olivia shares her memories of her younger years in school and gives tips for parents of what they might consider asking to include in their visually impaired child’s IEP at school and what they can do to help prepare their child for success in middle school and beyond.

During Part 2 of this episode, Olivia speaks to teachers who work with visually impaired students about how they can help their students in the classroom and help them become advocates for their own needs. Be sure to listen to Part 2 to hear about how Olivia’s been involved with Space Camp, outdoor adventure camps, her other activities, and what she plans to do in the future.

Watch Part 2 of Episode #3: https://waterprairie.com/2022/02/11/leber-congenital-amaurosis-and-space-camp/

Olivia’s Instagram: @O_Wilkerson04

Some of the topics covered during Olivia’s interview can be explored more below: Braille Challenge: https://brailleinstitute.org/braille-challenge/about

Connect with Us: https://linktr.ee/waterprairie

Support this channel: https://www.buymeacoffee.com/waterprairie

Music Used: 1) “Your Intro” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

View Details

Show Notes:

This episode of the Water Prairie Chronicles is being posted in 2 parts so be sure to listen to both sections. Emily speaks with Tonya about what it was like growing up with albinism, high myopia and nystagmus. She gives some great advice to parents who have children with low vision and includes the accommodations she has found to be the most helpful to her in school and in college.

Emily played goalball, a Paralympic sport, as part of a local recreational group when she was younger, and she speaks about getting a program started at her college. Listen to her description of this fun way to help connect the low vision and blind community with the sighted community in a sport that everyone can be a part of.

Emily’s Instagram: @oemilygrace

Emily's website: emilysoriginals.com

Goalball Information: waterprairie.com/shopping

Music Used: “Your Intro” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Connect with us: https://linktr.ee/waterprairie

View Details

Emily’s Instagram: @oemilygrace

Emily's website: emilysoriginals.com

Goalball information and supplies: https://waterprairie.com/shopping/

Music Used: “Your Intro” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Connect with us: https://linktr.ee/waterprairie

View Details

Your hosts, Steve and Tonya Wollum, talk about what Water Prairie is all about, how they came up with the idea, and who they want to serve through the information they will feature on the podcast and website. Find out where the name came from and hear some of the topics coming up soon.

Music Used: “Your Intro” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Connect with us: https://linktr.ee/waterprairie

View Details

Everyone has a story to tell, and I want to help share some of the stories of parents who are raising incredible children with life challenges. You’ll hear from adults who have made the journey of being a child with a disability and find out what they’ve learned along the way. You’ll hear interviews with organizations and specialists who can help guide parents as they look for support for their child and get connected in their community.

The Water Prairie Chronicles is a series of stories that will inspire you, encourage you, and help you view the people you meet from a new perspective. Episodes are posted every Friday at noon Eastern Standard Time. We’ll add some bonus episodes from time to time with behind-the-scenes and extra content. Episodes are about 30 minutes long, and you can find us at waterprairie.com/listen. Be sure to subscribe and tune in on Friday!

Music Used: “Your Intro” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

Water Prairie Chronicles Podcast: Recent Episodes

Tonya Wollum

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

divorcehelp #divorcetips #specialneedsdivorce

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Meet Today’s Guest:

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Meet Today’s Guest:

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Meet Today’s Guests:

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Meet Today’s Guest:

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Meet Today’s Guest:

Meet Today’s Guest:

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Meet Today’s Guest:

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Meet Today’s Guest:

Meet Today’s Guests:

Meet Today’s Guests:

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Meet Today’s Guest:

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Meet Today’s Guest:

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Meet Today’s Guest:

The Water Prairie Chronicles Podcast airs new episodes every Friday at Noon EST!

Kristen was telling me about the North Carolina program, but this program is available throughout the US so even if you’re not in North Carolina, you may find value.

Kristen went on to explain some of the benefits of the program, and this was where I was excited about the options families might not know about and why I decided to dedicate this episode to the ABLE Program.

And also any kind of interest that’s gained in there is tax free whenever it comes out.

The last question that I asked was actually a collection of situations that I posed to find out if the funds for the ABLE accounts could be used for those different situations.

So a specific question for some of our families that I’ve talked to, if they have a child who needs like transportation to school and they don’t have funding for that, is there a way for them to divert some of their savings to that?

Absolutely.

Would that be a benefit that they could have?

So a respite care for a parent with a child who’s medically fragile, would that come into that category?

Yep.

So those are questions that I get a lot, and I’m not sure where to point them to.

Yeah. Yeah. And also they can have an authorized user that can help the disabled person who’s opening up this account, and they can help them manage the money as well.

Okay, good. Yeah. So it could be used for the future adult life for this child that they’re raising.

Absolutely.

Excellent.

Excellent. Well, I appreciate you taking a few minutes to talk with us today and to pass this on to our listeners.

Absolutely. Thank you so much for your interest.

After hearing about the NC ABLE savings program from Kristen, I looked at the IRS website and the NC ABLE website to see what else I could find out about the program.