Mothers On The Frontline: Recent Episodes
Tammy Nyden
Note: This interview was recorded in 2018.
Transcription:
[music]
Welcome to the Mothers on the Frontline Podcast. Mothers on the Frontline is a nonprofit organization, founded and run by mothers of children with mental illness to promote caregiver healing and children’s mental health justice through storytelling. Our vision is a world in which mental health is destigmatized, respected, and prioritized as an integral part of the overall health of individuals, families, and communities. In this episode we hear from Dianne Thacker, a social worker by profession, a stay-at-home mom by choice, and someone who is dedicated to helping other families find the resources they need to help their children.
Interviewer: So, hello. Thank you for being with us today. Can you tell us a little bit about yourself. Before or outside of mothering, who are you? What do you love to do? What are your passions?
Diane Thacker: Okay. I’m Diane Thacker. I’m a social worker by profession. A stay-at-home mom by choice. I dubbed myself as a resource specialist. Later in the game I’m 50 years old and I am ageless.
Interviewer: I love that.
Diane: Yeah. I don’t get in to, “Oh my gosh. I’m gonna be old now.” I celebrate birthdays because you can. No matter the glow on the cake.
Interviewer: That’s right.
Diane: Okay. I love to read books. But I have a kind of a weird quirk about it. I start reading some of the end pages first.
Interviewer: Oh, do you? You like to know what’s coming?
Diane: Yeah. Or to kind of see what the outcome’s going to be. Because then if I get hooked in, then I could go back to and start reading it. Otherwise it’s boring and I’m not going to read it. And then it takes like maybe two or three days just to get it done.
Interviewer: Right.
Diane: Okay. I like to do genealogy. Although that wasn’t a bug issue when I begin with. For those genealogist who’d go, “I know. I know the bug.” It became a- let’s see and if I call that, an assignment. When I was fourteen and I was in my great aunt’s house in a small town called Zearing, Iowa. She asked me one day, and I’m just like, well maybe I was like eleven years old, if I knew who my family was. And of course I knew my mom’s side because that was all we knew. And I didn’t understand the question as to why she was asking me that. So I’m like,”Why?” And she’s, “Well because, you know I’m working on my family tree here.” And I’m like, “Oh, wow.” She has got a big table with all of her books and the papers. And I’m looking at her bay- this big wave bay window and I’m like, “I wish I could be outside now.” But I couldn’t. So we were you know hanging out and she says, “Well, come here Diane. Come here.” So we started looking at her stuff and I was kind of like, “Wow.” And she started connecting the dots. And for me now, connecting the dots is very important. It doesn’t always happen but when you look back at your life and you see things happening, “Oh wow that’s why that happened” and will get to that later. So then just about that time, I was doing a homework assignment. So that kind of fell into place. There is your dot. One of your dots. And so I said well- both side of your family. So in this case, we didn’t know that much about my dad’s side. My dad had died when I was six and a half.
Interviewer: You were young.
Diane: Yes, I was. But I did know him and I have memories of him. He was very determined. He dealt with- he had some health issues of his own. But he was very determined, very passionate. He knew-he wrote poetry, which is what I do now. It was just me and my brother and my mom. I don’t know. And he liked putting things together with his hands- fences and stuff. And he also cared for small animals.
Interviewer: Oh, nice.
Diane: Yeah. I do remember one day he was around, but I remember sitting outside of my house and there was what appeared to be a woman who was homeless. And I really felt the need that I needed to go and give her something but my mom was like, “We don’t know that person.” But there was that social worker helping persona in myself that was coming out early. I lived in the neighborhood where it was deemed unsafe. But to me it was like, no there was nothing unsafe here. My friends are here. I still have- I have a friend who, I’ve known her for, is that fifty years old now? Seven. What is that? That say seven? Forty three years old? For forty three years, yeah.
Interviewer: That’s great.
Diane: Yeah. I don’t know. We did- we went everywhere together. Got lost together. Got in trouble together. [laughter] For a month together. Yeah.
Interviewer: Beautiful.
Diane: Yeah. So then, one day an event happens when you have to move out of your neighborhood. So you move from your one location to another. At the time, we’re like, I don’t understand why. But going back, you look at the little- okay. So that put me into a parochial school versus public school. And yes, there are differences there. And maybe if I’m not connecting the dots, it made me understand when I have my kiddos now the differences of that. So I went to [appeal] school up until high school. And then a Catholic school. And then into college at Grandview. And I really didn’t know, you know, “What do you want to be when you grow up?” And I’m like, I have no idea. But again I knew that I had that part of me that wanted to help. And so I took a BA in Human Services. I would love to say that my professors were all like black and white. And it’s what you’re going to do when you get out of here. No, it wasn’t like that. He would tell stories about his world and experiences. And I wouldn’t understand why that had to do with the material in the book. But as I got older and began to understand, social work is not like that. It’s not like wrote down on a book. You may learn it but you’ve got to go outside the box, to live it.
Interviewer: A little messier. [laughter]
Diane: A little bit oh yeah. Okay. And then when you’re first learning the ropes of how to do that, I got my first- well, I was a nanny. Right before my work at The Boys and Girls Club, but as a nanny too. So that gave me the ability- small, to work with somebody and their family. And to bring the experiences that I had there. So I did that for a couple of years. And then I worked at one of the facilities here in town, as a youth service worker. I worked with offenders.
Interviewer: Wow.
Diane: Yeah.
Interviewer: So you’ve really- from working with young people.
Diane: Yes. And main families for-
Interviewer: And families. You’re whole life, really.
Diane: Yeah. Right. And in the mix of that I worked at one of the nursing homes. I was a receptionist, but I still had to know what was happening on the floor. Making sure that they weren’t going to walk out the door. Beginning, you know, if one of the residents came into me and say, “Hey I really want to talk.” To be empathetic person to them. To feel them out to see if they needed anything at that time. Be able to be on call when the flood came, ’cause that was during the time when the flood of 1993 came through.
Interviewer: Oh, wow.
Diane: Yeah. And I couldn’t go home that night. And the bridge had shifted. So they asked me if I knew how- the staff there at the receptionist asked me if I knew how to do a six-phone- phone line. No, not at that time. But I had learned really quick how. And again the dots came together because I got a phone call from a- she used to be a telephone operator. And she was looking for a way to help. And she says I’m like you- just one second. Can she- yes, she can come. And so she was able to come and take care of that phone line. But if I didn’t answer that phone, at the time, we wouldn’t have that connection to the- yeah.
Interviewer: So you really have been helping people all along from the whole spectrum. Geriatric, youth offenders, families. Really everybody.
Diane: I did some volunteer stuff. I would do hospitals a little bit. I didn’t- I went for the training. And I didn’t really have to use it until, well, a friend of mine went. So I then, I was able to understand the world a little bit more. If I had gone in there cold, I wouldn’t have been able to feel what to do and how to respectfully walk in.
Interviewer: Absolutely. So yeah.
Diane: Let’s see, so my life was pretty much, yes, social work filled. Up until about 2003. We had been- I had gotten married. And he- he’s a jack of all trades. He was a fireman, ambulance driver. You name it and he’s done it, corrections and all that. He was somebody that your mom would go, “hmm.” But I was like, yes, I like him. And that’s all the way it go- this one’s going to be that way. And I just knew. But I had- we hadn’t gotten married right a way. It was we waited for 4 years. I wanted to finish college and I wanted him to figure out what he wanted to really do. And then go from there, yeah. So we got married and we were told that we wouldn’t be able to have babies.
Interviewer: Oh my, that’s hard.
Diane: Yeah. That is hard. And I know there’s a few of us out there who- when I say that, well yes. But been there done it. And it’s- it’s kind of hard to hear. Especially if you-
Interviewer: It has to be.
Diane: Yes. Especially if you wanted to have them. So we’re like well. And there’s that no. I’m like, well, no-no-no-no.
Interviewer: You don’t like no.
Diane: No. Well there’s no for a reason. You know is it going to hurt you, is it going to be something you can’t do yet. Okay. But if there’s like this, well- maybe. But I’m like researching. Because that’s what I do too, I’m a resource specialist. And I try to find those ways to do it. Now, in my particular world, it comes down to my faith. My spiritual direction. Well my- I’m Catholic so there’s a certain expect- well not expectation but procedures, I’m not sure. There’s a different word for that. But anyway, of how that comes about.
Interviewer: Sure.
Diane: Yes. So we prayed about it a lot. And we followed the protocol of the church, basically. And still after being married 10 years it was- well, okay. It’s not time yet. Maybe it’s-
Interviewer: Right.
Diane: Yeah. And we’ll know. And then we sat down in church and it was during the Christmas season and we were talking about going and adopting. And I was pregnant, didn’t know it.
Interviewer: I hear that a lot. [laughter] I hear it all or people adopt, and then they get pregnant. That’s so interesting.
Diane: Yes. And my first child was born in 2005. And it was a long time, you know. But he finally came. And, I don’t know. My friend calls me on the phone and congratulates me. And she’s says like, “Are you going to do it again?” I’m like, “Yeah. Sure.” She just know that it was just the drugs. [laughter] No, no. But I was willing to do it again. I- like I say, I worked up until about, well it was 2006, actually. Because when my son Robert was born, he appeared to meet me know all this milestones. But then about 10 months I caught the cloud came over him.
Interviewer: That’s young. What happened?
Diane: He lost his verbals. He had already been speaking. He know mom and dad and all that. But his verbalization went away.
Interviewer: I see.
Diane: Yeah, you know. Do you know that you could say we had all of our shots as of that point, and there’s someone defends to go, well, you know, shots might have done it. Or maybe it was because he didn’t get enough oxygen. I mean, I don’t know. But he lost his sense of speech. He started to- when he was walking, he’d walked almost into things. Or all- he would see you but he would still walk into you. Things like that. And so again, being a social worker, had some of the experience, didn’t quite understand. There was something that was a little bit odd. Especially when he was watching a show, “Baby First TV”, and there was a bird. And he was flapping his arms. And I’m like, “Oh, that’s kind of cute.” But when the bird went away, he’s still flapping his arms. And I’m like, well that’s a little- that’s strange, okay? So I knew enough to say, how can you reach out- to say, “hey, what’s happening here.” So in this case, yes, I did call AEA. And they came out and they went through all their assessments and evaluations and they said behavioral stuff. And then I went, “Hmm, no.”
Interviewer: Not autism?
Diane: Not autism.
Interviewer: Really.
Diane: Yes. No, not autism. In fact one of their representative came out and tested him, it wasn’t autism. But they were about to determine it was all behavioral.
Interviewer: That’s interesting.
Diane: Yeah. But in my head, it was like, “No.” There is something more going on here. And that’s when I was also part of the Parents as presenters back then. Oh no, sorry. Parents as Teachers, yeah. And a very good friend of mine there- she said, “Diane, you know I’ve known you well enough to know that when your fussing about something, maybe that’s what’s- something odd is going on with him” yeah. And so she said, “You know- yes you have this evaluation, that’s fine. But do you think maybe you want to try another person, or entity or organization.” And I’m like, “Yeah. I do.” So she gave me the list. Which in this case I was familiar with giving list because I had also worked at Children’s Resource and Referral system for those who wanted to know about daycare.
Interviewer: I see, right.
Diane: Yeah. So again I was advocated for families and if you want to know where you could put your child or- I would be able to tell you. That I would be able to give you a list based on where you work in or your home environment. And you would have to go out take care of that. So it was comfortable for me to go, okay well here’s this list of. Let me make phone calls, and figure it out. Well I fell upon ChildServe.
Interviewer: Right.
Diane: Yeah. And they did their evaluations and they said sensory processing disorder. And I went, “What was that?” I had no idea. That big term for lots of issues. And I thought, “Oh no.” Okay now that- I mean it felt good to know there is a word but then what is it? How does it work? How is it going to affect Robert? How is it going to be for my family. All of those questions come up. And I didn’t at that time have an advocate in my corner to say let’s walk this together and figure things out. But I also knew that, that since I had a social worker hat on my head, that I could start doing that. And I also knew that I had people in the field that if I got stuck, okay why don’t ask them too. It was scary at that time. Because I still didn’t know what I was getting into. I didn’t know what questions to always ask. So there were times that the expert seemed more higher than me. But even that I began to fuss with that because I was like, “No, wait a minute. No. This is my child here.” And I’ve seen him get to this stage and I’m still not seeing what they’re seeing. So there- when we had conversations it was like, well are you- one, are you listening.
Interviewer: Because sometimes it doesn’t feel like it at all.
Diane: Right. Yeah. Right, you know. Two, am I seeing the same things that you’re seeing? Is there a middle ground that we could come together, go okay, let’s meet right here and figure things out. Or am I going to have to say to you, which is really hard, I don’t want to use your services. Because then you feel like you’ve made a mistake.
Interviewer: Right.
Diane: Okay? What you did, and your just advocating as they say, for your kid.
Interviewer: For your kid, right.
Diane: For your child. And making the best decision that you’re supposed to make which is sometimes hard to know even then.
Interviewer: Yeah.
Diane: Yeah. So I took that sensory processing word that I learned about Robert and I researched it. And the computer blew up of all of these different things about it and I’m like, “Wow” If you were to ask me then, are you swimming, drowning or whatever, noI was drowning because I had no idea what that meant, like I said.
Interviewer: Did the description to your reading, they seem to fit?
Diane: They fit, but it was just like okay, so how- is it going to go away? What you got to do? How long is this going to be? I remember one day, ’cause there’s my spiritual partner Melmi. We went in to therapy again for that day. And I came out just really like, “Hooh, how long is this going to be?” And for me, there was those handicap signs where a little bird had flew up on top. And then didn’t stay there. And it flew all the way to the top of the building and stood there. As if to say, “Diane, don’t look at the handicap. Go up higher. Go beyond it. It’s going to be okay. You might not understand it. It- he might not be here that long. But you need to keep going higher, because you’re going to have to go on this path and you’re going to help him get past that label. That sign. And it- and it work out like that. He graduated, he found his voice. He did. There were many times when I stood- if other people know about ChildServe they have a viewing window. And I wrote down every single word that he was doing. The social workers would come behind me, “What are you doing?” Yeah that’s right you are.
Interviewer: So he did get his voice back? He learned to speak?
Diane: He got his voice back. Yeah.
Interviewer: That’s wonderful.
Diane: He learned a little bit about boundaries although he was still you know mopping into things. I put him into soccer for the first time with sensory processing disorder. And that was- learning lesson 101, it’s okay. Bottom line. However, when you’re out there and the kiddos are running around and your kiddo is kind of running into or through them, and you have other parents who do not know what’s going on, and they’re not coming to you to ask, or they’re going to my Mom to say, “What’s going on?”, or the coaches, “Why is she out there?” If they simply would have said, “Come here.” I would have simply said well, the coach has said I could be out there because my child deals with this. And I want to be able to be there to help him through this situation I put him in, one. And I don’t want him going through your child and hurting them. Oh, okay. Advocacy.
Interviewer: Right. Right.
Diane: Right. And protection.
Interviewer: It never ends, right? It’s everywhere on the soccer fields, you have to be the advocate.
Diane: Right. And so I learned what he could and could not do. I learned as he got older what situations wouldn’t fit for him. I learned even when you were talking to a possible person or organization about, “Hey, what do you think?” Would probably fit in your world and they would go, “Hmm, not so much?” Without even an interview or a situation where they go, “Let’s try that.”
Interviewer: Right.
Diane: Yeah. So even that began to change my perspective of how I was going to approach things. Which now I do, I still find things for Robert to do. He just turned 13. That’s a whole another field but that’s all for today. But I still, if I call it say, I cold call and say, “Hey, I’m thinking about bringing my child here. Okay, so what is it that you guys do? How many kiddos do you have? This is all about Robert. This is what he is all about. What do you think? And I now get, “You know what, let’s bring him in. Let’s feel it out.” you know and if it doesn’t work I said, “Yes. That’s exactly right. I want to know straight right then, it’s fine.”
Interviewer: They give him the chance.
Diane: Give him the chance to show what he can do, yeah.
Interviewer: Absolutely. That’s great.
Diane: Yes. I did have a middle child, Michael. He’s all boy. He doesn’t have any health concerns. He’s very perceptive. He’s a mini me. Loves music, loves to dance, artistic. He also, and I try not to put him in that position and he kind of goes there, he care takes.
Interviewer: Talk about that ’cause the whole sibling issue is so fraught. How to navigate and how for other kids deal with it as well. So talk about that a bit.
Diane: Well, when I was going through college, we talked about siblings and how they are not on the front line. They’re in the middle. They’re picking up things, they’re you know whether or not do I want to be their brother, do I want to be their sister, do I want to deal with this. I have emotions too. I mean, lost here. Where do I fit.
Interviewer: Right.
Diane: Yeah. And when he was younger, Robert- he would act out. Unfortunately he would act out on his brother. So I have to, you know, “Robert, we can’t do that because that’s hurtful to him.” And then after I tend to Michael and try to explain to him, “He’s not hurting you because, you know. He’s hurting you because of this issue.” And so it became kind of clouded. Of course Michael had to grow into that sadly, unfortunately. And then fortunately, because now he can understand on some level that it’s not Robert that he sees. And there is a difference if they get in to the sibling rivalry thing. But yes, this is a sibling rivalry thing. It’s not the issue of Robert. It’s not the sensory part of Robert versus that all that is. And I can’t respond a different way.
Interviewer: That’s always the case, right? Because when you have a child with any kind of disability or difference, they’re still kids. And they’re still going to push limits and so on that may have nothing to do with the disability or difference. And the same thing with siblings. They’re still going to be sibling rivalry. So that- but it’s hard to just for us to tease out, it must be hard for sibling to tease out too.
Diane: And he would come to me a couple of times and say, “Mom, how come I don’t have an issue.” Where’s- okay so with the three and- there’s four kiddos in my life. But the three kid as I say, which is whole another thing too, “Where’s my check?” “Where’s my illness.” Well Michael- and so we had to explain and help him to understand that, well that’s not where God put him, okay.
Interviewer: Right. Right.
Diane: That’s Michael, that’s Michael. And okay, Michael might have a few differences that he was- when he was going to school. “Mom, they’re teasing me about that.” Well Michael let’s use it this way. They’re seeing a difference. I don’t see it. Mom and dad don’t see it. But can you with- so when we got past all of that, you know the tears and the understanding and try to talk him through that. Now Michael let’s look at that sibling to- Robert. Okay, Robert’s going to have this as long as he has this. And it will be a difference for the rest of his life. And other people are going to be seeing that and they are not going to understand. Similar, because you don’t understand why they’re picking on you.
Interviewer: Right.
Diane: So I utilize that.
Interviewer: So they’re all lessons – life lessons.
Diane: Yeah, they’re all life lessons.
Interviewer: Yeah.
Diane: So also I, you know in college, you learn about how you take your kiddo, you can give him to his own group, his own situation. So mom and dad, we spend time each with the child or in this case I put Michael into sib shop. It’s that–
Interviewer: That’s great, you have. Can you talk with it ’cause not everyone knows what that is–
Diane: Yeah.
Interviewer: Or has something like that.
Diane: Sib Shop is what the rest but connection or least if it’s a hour, where the kiddos who do not deal with special health needs go and be with their peers and they can talk and they can do games, crafts, whatever It just gonna have a day by themselves.
Interviewer: But they get to shine?
Diane: Yeah, they get the shine and then know there’s a couple of churches organizations near too. They’re outside the rest but they have, they have those peer groups too, where Michael can just go and be with his peers and it’s you know it, it’s particular cases religious base but it doesn’t have to be.
Interviewer: Something school could do.
Diane: Something–
Interviewer: Counselors could sit into groups, recreational centers could, churches can, anyone listening out there great kind of program to develop.
Diane: Please do because you know, we don’t a lot of them in Des Moines proper – it seems there are those out there but yeah so the rural areas lot of–
Interviewer: It’s even harder.
Diane: It’s even harder to find those. Yeah.
Interviewer: And that’s the kind of program that’s not that hard to develop, It’s getting the kids together.
Diane: Yeah, right and find out what they’re likes and what they like to do and then just sitting down and having a discussion even. “Hi what’s going on” and let them tell you and hang back and–
Interviewer: And let them be kids.
Diane: Yeah, let them be kids.
Interviewer: Yeah.
Diane: I don’t know so, he’s now a middle schooler, so in his world, he’s feeling out the difference of that– you know, what does it mean to be a middle schooler? Okay, he’s just coming out from kindergarten to fifth grade and kinda knew my way and now, what does it mean to be a middle schooler get ready to get into high school. He’s kinda worried about that and I also set him up with the counselor too or the guidance counselor too, so he’s had that chance to be able to vents. You know he can vent to me but you know, he don’t always want to. that’s over, that’s fine.
Interviewer: You need another people.
Diane: Yeah.
Interviewer: Specially they’re adults
Diane: Another mentor. Yeah.
Interviewer: So in this journey like what kind of things have been barriers to getting your son the help he needs to has the sensory processing disorder or the siblings, either one, what are the barriers or difficulties you encounter?
Diane: Well, initially with Robert, the barriers were those that were call quote and quote the experts.
Interviewer: that’s funny, let’s talk about that. What do you–
Diane: Yeah, well, to flush it out a little bit more when you’re a social worker by profession and let’s say home mom by choice, for me, I work two hats and when you go to the table at school and your doing the IEP for your kiddo for the first time and yes, I had that in college and kinda dismissed it like I don’t want that, I don’t even know them, I’m not gonna be using them, well, of course I am.
Interviewer: [laughter] You never know what you need.
Diane: There’s another that. [laughter] Work, clock work. We should table the IEP for the first time and your hearing the language that you haven’t heard before or your having else experts sit in front of you when they’re having a conversation between each other and they’re doing there scheduling and they’re doing their meetings and you haven’t been behind the organization for a long time so you don’t remember scheduling a meetings. And you ask the question “What does this mean?”. It’s almost as if you’ve walked into another planet. Like “what do you mean, what does this mean?”. “Don’t you understand that one?”. No and it’s not written in a language of just here it is spelled out with ABC or your child’s gonna do this and this and this.
Interviewer: Oh no, I mean it’s a whole different world of like I called it sometimes alphabet soup, all the acronyms if your not in that sphere. You don’t know what they mean and it can be very confusing.
Diane: Yeah. Yeah and so the first, I would say the first five years. Yeah, with Robert’s school because now he’s middle or seventh grade. I found myself reaching out to ask resource center.
Interviewer: Yeah.
Diane: Yeah and there they have parent educators and navigators and they come and sit with you and that way you’re not feeling like your by yourself. But you can reach of them and “What is this again?” or you know you could actually say you know, “I kinda leave the room ’cause I’m getting overwhelmed” And it’s okay and they’re not gonna go “Okay you know what, it’s okay for you to do that” versus having to check yourself all the time going “What am I suppose to do here?” yeah. I mean we work so hard teaching our kiddos what were suppose to do but as parents, you know, dealing with IEP and everything else with special health needs, we don’t.
Interviewer: Yeah I mean. Let’s talk about that for a minute because IEP meetings or Individualize Education Plan meetings when your child’s special at are very stressful for parents and I think part of it is just what you said they’re very emotional for us. It’s not only like difficult to figure out what the child needs and be part of the IEP team and everyone struggling figuring out what ‘s the best thing is, that’s one thing, but when it’s your own kid. It’s the love of your life suffering and you want to figure out how to change that and that’s painful, so you can’t just take off those emotions conveniently and then figure it out. [laughter]
Diane: No. No. No.
Interviewer: So it is overwhelming.
Diane: Yeah it is. I mean there, we’ve, there have been times where my husband and I attended the meetings and just because I felt those barriers come up again and knew. I wasn’t, I wasn’t being hurt or wasn’t being explained of the matter that was timely because they’re all be looking and gonna watch and “you know, I’ve got a meeting to go to” and I like “Wow really?, No, No”. Whenever we have IEP meeting we need to sit down and go you know what it’s gonna take as long as it takes. One and then two, it’s gonna come you know, It’s gonna have to be written out but you gotta understand the language and it may you know, it may just be that we have that come back in other time and regroup and figure out ’til we get exactly what we want and that’s just okay.
Interviewer: Exactly.
Diane: Yeah, that’s okay. So, there were several meetings that were like that. I can say going forward now I had I also have twins– that’s fun. [laughter]
Interviewer: you’ve have nothing on your plate– [laughter]
Diane: Right, yeah and chocolate is my dessert the other plate. [laughter] you know. So I have twins and they’re boys as well and they just started kindergarten and another thing that I could throw in there before I get to that is it’s the environment, when you put your child in the right hands of the right school and you know it and you can walk away knowing that even though there’s gonna be a melt down or you’ve going to get called back up, it’s gonna be okay because that team is right behind you too as you go walk back into that school because they care. Well, in Robert’s situation with the twins, for middle school and I don’t have the problem saying where, Hyatt, that school for Robert and those teachers, night and day, they love him and they just come together and they make everything spelled out and it’s I don’t know it was just really good to know they are behind him and he went from having all this behaviors and acting out to “Hi, How are you doing?” you know and , “I love You they love me back” and it’s just you could see he really wants to go and he shine and it’s working out. So when it comes to the twins, to have their first IEP and their violations and everything, I didn’t have an Ask Resource person next to me. I didn’t have that advocate next to me because I’ve had all these years of Robert teaching me basically. His sensory issues, the IEP and all of that, so I was able to sit down around the table and go “Oh, My name is Dianne, a social worker by profession, I sit home by choice” and were talking about the twins, just as easy as that and then go “what are we gonna do today ladies and gentlemen?”.
Interviewer: So you really built confidence in your experience?
Diane:Yeah.
Interviewer: So experience and wisdom, develop into a confidence?
Diane: Yeah, it was another persona even and when they in the table ask me, “What is that sensory processing disorder?”. Well, I took them in a journey. I took them all like maybe 5 or 6 in the room, darkened the room and said “Okay, we’re going to learn what that is together” and by the time move out, 10 minutes into they were like ” Wooh” and I’m like “Yup, imagine that having all that issue with all your senses being bombarded for those you who don’t know sensory processing is, you whole entire senses are bombarded and you can’t really express what it is you really want to say and you’re kinda stuck” and then maybe have a conversation with somebody and you started acting out because as you know all our senses got involve our formation in it but we can’t, we can’t, we can’t have it behaviorally and they’re going to tell you you’re not gonna do that and you’re like all anxious. Well, that’s Robert, times 10.
Interviewer: So one thing I’m hearing, I think is very important for parents to hear especially when you are the very beginning of the journey. Is that you do develop a confidence and that your ability to advocate grows? Your advocacy grows and it will serve you in the future. No matter what that is, sometimes it’s even just not related to disabilities advocating for ourselves and like you learn how to get that confidence and I think that’s very important.
Dianne: Yeah and then you, you’ve got the question “Where do we start at?” well, hopefully, hopefully there will be that advocate to say “You know what, come on mom and dad, I will show you, I will show you where, but again it’s up to you, to take the information and fill it out.” And not having have to make that decision right to that day. They don’t know what they’re doing when they first learn that their kiddo have special help needs.
Interviewer: Absolutely.
Diane: Okay. It’s, It’s…
Interviewer: Very emotional–
Diane: Yeah.
Interviewer: That’s very difficult.
Diane:Yeah, because you learn, I think we all had, I think it’s fair to say we all deal with because we got this baby, 10 toes, 10 whatever, you know “Ye hey” and then, and then but mom and dad were dealing with this, okay, so there’s a little bit of grief there. It’s a little bit of a “What does that mean?” and a little bit of anxious and how is that gonna work? And I’m hoping, I’m hoping for everybody that they be that person to go “Okay, breath, breath, the first thing you got to do just it will be okay, we’ll work it through” you may not have the same land that you wanted it to be. It’s not Holland but it will be Illinois or maybe–
Interviewer: Alright.
Diane: It will be okay.
Interviewer: Exactly. And so what–, in your journey, was there anything in particular that just when you mention this great school so that would be one example?
Diane: Yeah.
Interviewer: Is there anything else you can think of that just like “That saved the day”, like just that one–
Diane: The love of the moment–
Interviewer: That policy, whatever that makes that wow or something that you ran into that just really helped your son.
Diane: Okay.
Interviewer: You were just like “Oh, I just hope that’s there for everyone else in the future ’cause it made such difference for us”.
Diane: No, I just–. Not exactly a policy or–. Just been able to really get that confidence and saying “Hey, I need to advocate here, I need my voice to get heard” Being able to just take that step back and write it all out, okay. Just that, just been able to have them say “They”, it sounds funny but they and us, you know what–
Interviewer: It feels that way, sometimes it really does.
Diane: It feels that way, yeah. Mom and dad it’s okay. we don’t have to make a decision today. If you could just say that, yeah or you know what, let’s table this and tell “Is that okay with you?” and make it back on them and feel them out versus having them say “Well, you know, we know what’s best” Yeah. No. Not all the time and it’s okay for them to go “Oh, you know what, I don’t know what’s best.” Your’re mom and dad and we’re here to help you. Yeah.
Interviewer: Yeah. So really. So the parents here are part of the team as oppose to, which is how it suppose dto be. We are a part of the IEP team for instance, but that’s really an important thing, so one thing that really works is when, whether it’s a team them IEP team or the medical team or whatever it is, to really truthfully includes the parents as an equal part of that team.
Diane: Yes. Yes. and that’s what I’m trying to say is, once you understand that you’re all there, you know, you each have your role and that’s important. The mom and dad and this was said to me “Mom and dad are team leaders”
Interviewer: Yeah.
Diane: Why?
Interviewer: That’s a good point.
Diane: Because they’re bringing their child to you, the service. Okay, and yes you’ve all gone to your trainings and you know whatever that maybe to get you to the table. Kudos to you and everything you do. Okay but, but period, not a but, but period, we’re bringing you our child and staying here. Okay. We don’t have that experience in you know, developmental or issue or milestone or whatever that might be. We might, because we might be a nurse, then you have second hat, hat on their head. But if we don’t we’re looking to you to say “What’s the next step?, We’ve got in here, Okay, what’s next? Feel won’t help us fill in that blank. Don’t make the answer for us, but just “Give us that list, that options”.
Interviewer: Alright, so this has been a long journey and as we always say in all this interview is you know what to change in this moment to moment but where are you right now? Do you feel like you’re swimming, treading water, drowning, what do you feel right now?
Diane: Well, it’s very, it’s kind of a hard question, especially if it’s day to day.
Interviewer: Yeah.
Diane: Yeah. This morning I feel like I was drowning a little bit only because well, because I had 4 kiddos and then trying to get them all set ready for school and they all like “I don’t want to”. They’re all boys though but– [laughter]
Interviewer: And school just started you should stay.
Diane: And school just starting…
Interviewer: It’s a very challenging times in any of us. Yeah.
Diane: Yeah it is and of course the hours are different and–
Interviewer: Were all mourning summers [laughter]
Diane: Yeah. Yeah, and so it’s just trying to get them back in that routine and then working with each person who you know, each child is an individual anyway, even if they are twins. Get on board and get out the door. And then you can breathe when every bodies out of the door and there places and you feel like “Yup, they’ve all got the experts around them, the school people around them, they’re fine” and you know my spiritual part comes up to me ’cause I read this a couple of days ago, “Dianne, God saying hi there remember”, “I got them, they’ll be okay”, “You need to go take care of yourself and, and do whatever it is you need to get done before you deal with them again and they say ‘Hi mom, how you doing?’ you know, okay” [laughter]
Interviewer: Take that window while your have it, right?
Dianne: A little bit, just a couple of hours you know. Yeah.
Interviewer: Speaking of which, how do you take care of yourself? or how do you survive if- or survival techniques whatever is applicable?
Diane: Okay, right now, I will tell you when I drop off the kids for the first time this first day of school. My mentor, one of my mentors and she’s not longer with us she’s in another side of heaven, she said to me “Dianne” she said “Dianne, when you drop off your last kiddo, you spend that day doing exactly what you wanna do” because you know there’s, there’s, there’s we work you know, we go to school, we got a job, you have an identity like that and then when you choose or situations happen when you’re no longer working and you become a stay home mom because you choose to do there that’s going to works out, you become that person. Mom, hat and banker and all things of mom who would in house were in house and wife and all of that.
Interviewer: CEO, I mean you gonna love…
Diane: CEO, okay. No…
Interviewer: Mom does a lot [laughter]
Diane: And you know, we all seen that picture where was like “Okay, let’s add it up” and we don’t get that pay check.
Interviewer: Absolutely.
Diane: Okay and then we say women, women need to work if you need to but that’s totally fine, that’s your thing, that’s your passion you know. Yet, if your at home, you know, we have to find our perks. What is it that were stayinh home for? You know, What is it that we wanna get pay for and all of that. So, I have been fastened for the last maybe a year “Okay Dianne, what are you gonna do when you grow up?” and your kiddos were at school. I’ve got to celebrate though [laughter] and I did and like ” Oh my gosh that and it’s kinda funny” you know but then I went back to “Okay, what does Dianne wanna do?” Well, Dianne liked to read, Dianne did genealogy I did even was having my kiddos but you know, they’re not grown but I was still find time to do that but I do my Genealogy. I you know like watch TV but it’s for historical reasons and stuff, I get on my computer and I look for those resources you know again if you cannot find it Des Moines proper, I gonna find one outside of Des Moines proper and I might want to make a cold call say “Listen up people out there and if I get a cold call from Dianne I might wanna bring your program here”. You know are you thinking about that? Can you make something similar here? because it’s not here. Then I’m gonna kinda bust your bubble and get you out of your comfortable zone and bring you here. Yeah. Trying to, well, you know, social card get my CEU’s, so I wanna get my trainings and learn more about it. Yeah, just, just do that.
Interviewer: Right. So I can see in your face, our listeners can’t see your face but you just light up. [laughter]
Diane: Exactly. Yeah.
Interviewer: So talking about. So obviously this energizes you, it nourishes you.
Diane: Yeah, that and if you put a person in front of me I was like “You know what, I have this dream” and I’m like really? tell me about it. [laughter] Tell me about your dream please you know and I am gonna be like “Wow, I wanna be someone so” and I’m like “That’s great, why are you not doing it?” then like “I don’t know, No really?”, “Where do you have to do in order to get there?” I don’t know. So I’m your girl I’m your like, “let’s research that.”
Interviewer: That’s awesome. That’s awesome
Diane: Yeah, there’s a couple of things I gonna doing to. I’m gonna be going to my mother-in-laws. Nursing home and I talk to the Acuity Director and we’re going to be putting together a genealogy type of, what do we call, lesson or a–
Interviewer: How fun– that would be special.
Diane: Description of them you know and so in there and if they’re dealing with dementia a little bit, hopefully that will push a way a little bit and break open those memories. Okay.
Interviewer: Do you say things like that really help–
Diane: Yeah, so I had the inspiration so was like called through and called, they said “Okay, we’ll figure that out”. So I’m suppose meeting with them some time.
Interviewer: Will that would be nice–
Diane: And then I gonna be making a little newsprint about Alice you know, you could put them out of their door little bio–
Interviewer: Nice. that would be so nice.
Diane: Yeah, so that’s one thing I’m doing and then I also as I told you earlier, had a interview couple of hours for the genealogy place here in the morning or actually in the must in morning yeah that’s one. And I gonna be able to help families come together and find their family members and–
Interviewer: That’s exciting.
Diane: It is. I always have that drive to do it and I’ve been doing my husband side, his family. That’s so much fun, because this family on his grandmother’s side do not know that they had that relatives.
Interviewer: So discovering new people–
Diane: Yeah and then you know involved with “What” and so they found out that there’s like 14 siblings of this of the great grandparents–
Interviewer: Wow.
Diane: So each one of them has a descendant of two or three and then you find them connecting together and like it’s just so much fun to watch ’cause they’re like “Look at you. You’re my kid and you look a lot like this” and yeah.
Interviewer: That’s fun.
Diane: Yeah.
Interviewer: So we always end these interviews with the same question, anyone who been around has a funny story [laughter] but is there a moment that you think that was laughable moment or something that just makes you smile and you look back at it?
Diane: Yeah, well, there’s a couple of them so I share that with, I give each one there’d do, well, when we get ready for have for hours, I mean the hospitals and I’m so tight and just really tense ’cause I’ve never done this before and my brother in law comes in boom the door and you know he goes “Girl, you haven’t have that baby yet?” [laughter] Just started laughing and like no man.
Interviewer: Working on it. [laughter]
Diane: Yeah, he was “get to pushing, get to pushing” and I just broke up laughing because I never expected him to even come in there and do that you know, he wasn’t the type like that.
Interviewer: He relieve the tension. Yeah.
Diane: He really relieve the tension, well and it was fun. Yeah, with my son Michael, he always, I mean he just does it you know he sees me hanging out and he also come over to me like “What you doing mom?” “What you doing mom?” Let me tell you all about it mom. He has he’s learning how to do voices. So yeah, he’s a comedian tap dancer and he will come in sliding in like Fred Astair – sliding back out so I’m always you know–
Interviewer: There always making you…
Diane: Just yeah. yeah. and the twins, for those of you who have twins or triplets you just know that any day is gonna be something…
Interviewer: something funny?
Diane: Funny yeah, but just recently I took the kids up to the school and told their teachers. Well, my oldest twin, Junior, “Okay guys, the doors to the backyard or the playground is right here” and his classroom is right there so you might wanna make sure he doesn’t go out that. “Okay, I make sure he doesn’t mam”, “Okay”, so later that afternoon, “Ma’am?” “Yeah?” “Well, one of them got out”, “Well, was it junior?” “No, it was the other one” he left the building and I didn’t prepare those teachers for him. It wasn’t suppose to be him [laughter] it was… like “Oh no, I’m sorry about that”. Yeah so–
Interviewer: There’s always something.
Diane: There’s always something in my house. I got the four sons and my husband and–
Interviewer: That’s enough to keep anyone busy.
Diane: [laughter] Yeah.
Interviewer: Well, Thank you so much for sharing your story with us.
Diane: Oh yeah.
Interviewer: Thank you.
Diane: Thank you.
[music]
In this episode we discuss the policy frameworks and philosophical assumptions underneath current punitive systems including policing and schools. (We will continue this discussion next week and look at some promising new frameworks that are currently emerging that could move us beyond a paradigm of coercion and compliance.)
Terminology:
IEP - Individualized Education Plan - the document that determines the accommodations and supports for a particular student in special education.
Ontology - theory of being, framework of what entities exist or how to categorize what exists.
In this episode we discuss:
what it means to be an allythe difference between performative and authentic allyshiphow allyship differs from friendship and being a coalition partnerstigma jumping vs intersectional activism and advocacy
Terms:
Allyship - An active, consistent, and arduous practice of unlearning and re-evaluating, in which a person in a position of privilege and power seeks to operate in solidarity with a marginalized group and works to ensure equality, opportunity and inclusion for everyone. (Thank you to Sonya, Sophie, Gigi and Lilah - students in Dionne Bensonsmith's "Introduction to Feminism, Gender, and Sexuality" Class in the Fall 2019 at Scripps College - for this definition.)
Intersectionality - A framework for understanding the interconnected nature of social categorizations such as race, class, and gender as they apply to a given individual or group, creating overlapping and interdependent systems of discrimination or disadvantage. (This term was coined by Kimberlé Crenshaw in 1989.)
Stigma-Jumping - Avoiding association with potential allies or coalition partners to avoid their stigma being attached to your cause, organization or person. Stigma jumping is a barrier to intersectional activism and advocacy and therefore neglects the most vulnerable. (This term was coined by Tammy Nyden in 2017.)
Resources:
Allyship (Definitions):
Rochester Racial Justice Toolkit “What is Allyship?””
Michelle Kim “Allyship (& Accomplice): The What, the Why, and the How”
Seventeen Magazine “What is Performative Allyship?”
Teaching Tolerance “Ally or Accomplice: The Language of Activism”
On Privilege and Power
University of San Francisco, Gleeson Library “White Privilege Resource Guide”
How to be an Ally (start here and by all means, do not stop):
The Anti-Oppression Network “Allyship”
Amélie Lamont “Guide to Allyship”
Jamie Utt “So You Call Yourself an Ally: 10 Things All ‘Allies’ Need to Know”
Chris Scot Cole “3 Things Not To Do When Someone Discloses Their Invisible Disability”
In this episode we have a conversation about defunding the police:
what it means, what it doesn’t mean, and how the phrase raises different emotions in people depending on their personal experiences with the police and racism.How decades of consistent and pervasive defunding of community programming, healthcare, and education has harmed communities. We focus on the effects for children with disabilities.School Resource officers and police brutality in the schools that specifically targets black and brown children and children with disabilities.How policy runs on narratives, not statistics. We discuss and challenge narratives about “bad neighborhoods” and “bad children” that are steeped in anti-black racism, anti-indigeneity, and ableism and have fueled bad policy for decades.
For more information about this topic:
Defunding the police:
Democracy NOW!: “Defund the Police: Linda Sarsour & Mychal Denzel Smith on What Meaningful Change Would Look Like”
USA Today “What does 'defund the police' mean and why some say 'reform' is not enough”
Black Lives Matter
Los Angeles Times “Eliminate school police, L.A. teachers union leaders say”
Reading Towward Abolition: A Reading List on Policing, Rebellion, and the Criminalization of Blackness by the Abusable Past.
Resources for teaching and talking about racism:
EdJustice: “Black Lives Matter at School – Resources”
Watson, Dyan, Jesse Hagopian, and Wayne Au. Teaching for Black Lives. , 2018. Print.
The Black Lives Matter Syllabus
The School to Prison Pipeline:
Bullies in Blue: The Problem with School Policing [infographic] by the ACLU
Cops and No Counselors: How the Lack of School Mental Health is Harming Students by the ACLU
** The image above was drawn by Akim, a 10 year African American boy expressing his feelings in this current moment of police brutality, racism, and Covid-19.
In this episode, the founders of Mothers on the Frontline discuss grief, racial privilege, policing, and the performativity of emotion.
Families and communities are grieving right now. We are grieving the deaths of over 100,000 Americans to Covid-19, which has disproportionately affected Black and Brown communities. We are grieving ongoing and countless losses of African-American Women, Men, and non-binary folk, children to elders, to institutional racism, particularly by the very structures that should be protecting them, including the police. Many parents are grieving the loss of the veneer of safety they once felt for themselves and their black and brown children in the community and in their very homes.
Many white allies see the collective grief in the Black community and the pain in the eyes of their Black friends. They want to be helpful, but often fail to recognize their own emotional privilege. We examine how the centering and privileging of white emotion can result in dysfunctional empathy, as well as the weaponization of white lady tears.
Today’s conversation challenges us to think about how the expression of emotion is learned and responded to very differently between White and Black women and how white emotional privilege in turn affects social narratives, resulting in particular interactions between children, police, and schools which are detrimental to children’s mental health.
If you are interested in learning more about some of the topics mentioned in this podcast we suggest the following:
For information on addressing racism and racist thinking in your personal relationships: Seed the Way “Interrupting Bias: Calling In vs. Calling Out”
A good guide on ACEs and Toxic Stress: Harvard University: Center on the Developing Child “ACEs and Toxic Stress: Frequently Asked Questions”
Mentioned in the Podcast: DiAngelo, Robin J., White Fragility: Why It's So Hard for White People to Talk about Racism. United States, Beacon Press, 2018. National Domestic Workers Alliance
Kate is a mother from Iowa whose children have autism, anxiety, ADHD, sensory processing disorder and prosopagnosia. In this episode, she discusses what it was like when her son was first diagnosed, adjusting each year to new teachers, and what it is like to go through the ups and downs of parenting children who are 'differently wired'.
A mother speaks about raising a 9 year old with ADHD, Oppositional Defiant Disorder and Anxiety.
In this episode, a foster and adoptive parent shares her experience of caring for her biological, adoptive and foster children.
In this episode, Diana shares her experience mothering a 17 year old daughter with anxiety and depression. Mentioned on this episode:NAMI: National Alliance on Mental Illness: https://www.nami.org/ Transcription[music in background]
Voiceover: Welcome to the Just Ask Mom podcast where mothers share their experiences of raising children with mental illness. Just Ask Mom is a mother's on the frontline production. Today we will listen to Diana, an Iowa parent with a 17-year-old daughter with anxiety and depression.
Tammy: Tell us a little bit about yourself before or outside of mothering. What are your passions? Who are you? What do you love?
Diana: Well, I enjoy biking and taking long bike rides, not competitively or anything but just kind of peddling along. I enjoy yoga and take some time for that when I can, and I enjoy writing.
Tammy: Wonderful. Do you like creative writing, journaling, what kind of stuff do you do?
Diana: All of that. I used to write for the newspaper when I'm just column and just kind of a life in the day of life and of mom, and that was fine.
Tammy: That's wonderful, it's great. I want you to pretend that you're talking to people who just haven't had any direct experience with mental illness - whether in their own life or anyone else in their direct family or friends- they just haven't had to deal with it. What would you like them to know about your experience?
Diana: What I would like them to know beyond just my experience and just in general but particularly with me if you see me, is that it isn't always what you think it is and it doesn't always look how you think it's supposed to look. Please don't make the assumption that we might be wrong or dramatic or overreacting, and I know it might seem like that at times, but please just put compassion first and really trust that somebody who is living a situation particularly with their own child, their own family member. They are the expert and if they say something that doesn't really make sense to you based on what you observe of that child or that person, please just be compassionate and believe that there's probably a lot going on under the surface or things that you don't understand about it, and appreciate their honesty and being able to share.
Tammy: Absolutely. Can you think of examples of where people have just not seen - like they see it one way but something else is going on - so that you just wish you could just sort of scream?
Diana: Every day.
[laughter]
Diana: Every day. An example that comes to mind is a parent-teacher conference in which I was trying once again to gently and with a friendly face remind teachers that my daughter has a 504 plan, and that she has these accommodations and that they're legally required to provide those to her. We were having a little difficulty and the teacher said, "Well, I just don't think she's anxious, I mean I don't see it. I don't think she has anxiety, frankly", which is kind of a classic example. I actually appreciate the candor that that teacher showed because there are other people who are more passive about it but they certainly seem to be indicating that maybe my hyper-vigilance is causing anxiety. That's tough to take, it's a little insulting. There are people who sell my daughter short and kind of limit her based on, "Well if she's really anxious then maybe she should just do this and not even try this other thing".
Tammy: I think it's a really good point because mental illness is portrayed a certain way in the media and movies and all this kind of thing. The assumption is you could see and know what is going on with someone, but someone could be going through a whole lot and look fine on the outside sometimes, or at least be able to do that for a small amount of time whether at school, at work or what have it. Right? It would be easy for someone to not notice because they're not living with it day to day.
Diana: Right. I think that my daughter is very much like that.
Jill discusses caring for her son whose bipolar disorder surfaced during the teen years. She describes the lack of resources in rural Iowa, the criminalization of mental illness and how that affected her family. She explains how this journey as a mother makes you learn who you are as a person and how strong you can be. Transcription [music]
Female Voice: Welcome to the Just Ask Mom podcast where mothers share their experiences of raising children with mental illness. Just Ask Mom is a Mothers On The Frontline production. Today we will listen to Jill, a mother from Iowa, share her story about raising a son with bipolar disorder.
Tammy: Thank you for doing this. We really appreciate you being here.
Jill: Absolutely.
Tammy: Before we get into a lot of the content could you tell us a little bit about yourself before or outside of mothering, who are you? What are your passions? What are you interested in?
Jill: It's a great question. Well, first of all, I think I've known since I was five years old, probably or even before that I wanted to be a teacher. My grandmother was a teacher, my aunt was a teacher. I would have to say that was my focus through high school. I went to college, I'm a teacher and I'm very passionate about it, very passionate about early childhood education. I currently decided to personally take a step back and decided to work on my Master's degree.
Tammy: Wonderful.
Jill: Yeah, between doing that and teaching full-time and having two children, let's say two teenagers at home. [laughs]
Tammy: You're busy.
Jill: It's busy. When I have a free second to breath and if I'm not writing the research paper or discussion thread I am spending time with my family and friends. That's very important to me. I like to exercise, I love to be outside in the summer in my flower garden. That's kind of me by myself.
Tammy: So you knew early on what you wanted to do?
Jill: I did and I think that doesn't happen a lot.
Tammy: No.
Jill: I I think a lot of children these days are just full of pressure. "I don't know what I want to do. I don't know what I want to do", and I just tell my boys I hope it's just a lucky one. So, 20-some years I've been in it and I don't ever see myself do anything else.
Tammy: Oh, that's wonderful. You love it, that's great.
Jill: I do, yes.
Tammy: It's a gift when your passion can become your work.
Jill: Yes, absolutely.
Tammy: Absolutely. I want you to pretend that you're talking to other parents. What do you want them to know about your experience as raising a child with a mental health condition? What would you want them to know?
Jill: I would say number one, trust your instincts. If you see something maybe that is out of character for your child, maybe something that differs from what they have "typically", how they've been acting. I guess just picking up on those little cues. I look back over the journey with my son it's been three years. Three years and three years now has gone by and I look back at some of the things and say. "Wow, I wish I would have been-- went with my gut more than I did". Does that make sense?
Tammy: It does. Now with your son, was there a clear before-and-after of an onset of symptoms, did it sort of come on at a certain point in his life or did you always see it his whole life, or?
Jill: No. We did not see it early on in life at all. There was no signs or symptoms at all. Probably started seeing it at the age of 15, his hormones were really coming on. When we first started seeing signs like I said looking back impulsive behaviors and things that typically hadn't been characteristic of my son, but because some of it we kind of blamed on, "Oh, he's a teenager. Oh, he's sowing his oats, he's doing this", but then he would be fine for a while. Then well, we'd have another as well, I say now an episode of just uncharacteristically behaviors. I should have went with my gut more than I did but I did try to get some he...
In this episode, we listen to Miss Diva from the USA. She speaks about raising a son with schizoaffective disorder, bipolar, ADHD, PTSD, and Seizures in the African-American Community. Please be advised that this interview contains content about domestic abuse and may be upsetting for some audience members. Transcription Women’s Voice: Welcome to the "Just Ask Mom" podcast. Where mothers share their experiences of raising children with mental illnesses. Just Ask Mom is a Mothers on the Frontline production. Today we will listen to Ms. Diva from the USA. Please be advised that this interview contains some content about domestic abuse and may be upsetting for some audience members. This interview was recorded at the 2017 National Federation of Families for Children's Mental Health Conference in Orlando Florida. During this particular recording, you can hear noise in the background from another event in the hotel. Please don't let these noises distract you from Ms. Diva's story.
Dionne: I'm sitting here with you and I wanna say thank you very very much...
Miss Diva: You're welcome.
Dionne: ...for agreeing to be a part of our podcast. Can you please introduce yourself?
Diva: My name is Diva and I am called Diva because I have been through so much in my forty-four years on this earth until I feel like there is nothing anybody can do or say to break me anymore. And I feel like you can try but I'm always gonna come out victorious because the Diva is always going to hustle - get it done for her and her children no matter what. If she has a man or she don't have a man, she don't need a man to make it happen. And that's me.
Dionne: Thank you. Well, tell me Ms. Diva, tell us a little bit about who you are and who you were, what are your passions? Who are you outside of and in addition to being a momma.
Diva: Oh my gosh! First of all, I honestly didn't wanna become a mom. I was scared that I wasn't gonna be able to give my children the love that they needed like they were supposed to have. Because when I was a kid I felt like I wasn't loved passionately enough as a child suppose have been loved by their parent and encouraged enough because my parents didn't give me that encouragement. They gave my younger sisters that encouragement but as for me, they didn't do that. But when I had my children I was like, "Wow!". When I had my first child I was like. "Ohh,hhuuhh!", you know, like "Oh, No!". And then had my second child after I am married. And then my third and my fourth. And then I was like, "Oh no, I'm a mom!". So I was like, "Okay, I gotta step my game up since I'm about ten thousand times more than what they did.". So my goal was to always let my kids know that: "I love you and there is nothing that you cannot do. I will never stand on the way of your creativity. The word ‘can't’ and ‘I won't’ will no longer be in existence for you all." My kids used to think I was mean because I used to give them books to read. So, they was like, "This is a punishment". No, it's not though my kids one of the--it wasn't. I have been through domestic violence, my kids have seen that. Still legally married to the man. He tried to kill me and my kids. So we are still standing the risk. That's why I say I'm that diva because I refuse to allow you to dominate my life because if I let you dominate my life, it's like you still have your hand in my life. "Oh no!", because I'm going to do what I need to do. I have four children: 24, 18, 16 and 14. I have an 18 year old. He has a bipolar schizoaffective disorder and the alphabet. And once--you know what I mean when I say the alphabet.
Dionne: Yes. The alphabet soup of diagnosis, yes.
Diva: And sometimes he has his good days, sometimes he has his bad days. And it's like, "Whoa, wait! Hold up!", and sometimes he wants to listen to me, sometimes he don't. But he's at the conference with me. He's doing good. When we walk past to come here, he was sitting in a class listening paying atte...
In this episode, we listen to Melissa, a mother from rural Iowa, share her story about raising a son with severe depression. Please be advised that this interview discusses suicide and may be triggering for some of our audience. (See below for transcription.) Suicide Resources: The National Suicide Prevention Lifeline is 1-800-273-8255
The Lifeline provides 24/7, free and confidential support for people in distress, prevention and crisis resources for you or your loved ones, and best practices for professionals.
Trans Lifeline - Trans Lifeline is a national trans-led organization dedicated to improving the quality of trans lives by responding to the critical needs of our community with direct service, material support, advocacy, and education. Our vision is to fight the epidemic of trans suicide and improve overall life-outcomes of trans people by facilitating justice-oriented, collective community aid.
The Trevor Project - The leading national organization providing crisis intervention and suicide prevention services to lesbian, gay, bisexual, transgender, queer & questioning (LGBTQ) young people under 25.
You Matter -This is a safe space for youth to discuss and share stories about mental health and wellness, created and administered by the National Suicide Prevention Lifeline. You Matter blog posts are written by a rotating Blogger Council of individuals between the ages of 13-24 that are passionate about suicide prevention and mental health.
Transcription of Just Ask Mom, episode 17 (0:00)
(music fades in)
Woman Speaker: Welcome to the Just Ask Mom podcast where mother share their experiences of raising children with mental illness. Just Ask Mom is a Mothers on the Frontline production. Today, we will listen to Melissa. A mother from rural Iowa, share her story about raising a son with severe depression. Please be advised that this interview discusses suicide and maybe triggering to some of our audience.
(music fades out)
Tammy: Hello. Can you tell us a little about yourself before or outside of parenting, what do you love? Who are you?
Melissa: My name is Melissa and I'm a mom here in rural Iowa. I farm with my husband in a small community. I love the environment. I love watching our children grow. Just being outdoors, reading, that kind of thing.
Tammy: You like watching lots of things grow, it sounds like.
Melissa: Yeah.
Tammy: That's awesome. I want you to pretend that you're talking to peers of kids that are going through mental health difficulties and their parents. What would you like them to know about your family's experiences?
Melissa: I would say that our experience as parents with a child with debilitating mental illness - would be to just maybe ask, be inquisitive. Try and find out, not in a nosy type of a way but just-- so maybe you can learn a little bit more about the situation and not just shut the doors essentially because it's very challenging on a daily basis. When you're feeling the doors slammed by parents or peers that don't necessarily know the story, it just makes life that much harder. (2:00) My child has a lot to give to this world. He's beautiful and he's kind but he just struggles with certain things. But I think his life as a youth could have been much easier if some closed doors would have remained open.
Tammy: You bring up a really good point because a lot of times, if our children are sick, let's say if they have a physical illness or the measles or what have you, people would naturally say, "Oh, how is your son doing?" Right?
Melissa: Right.
Tammy: They would naturally ask. Maybe people are afraid to ask us or talk to us. They shut down or shut us out sometimes. Is that right?
Melissa: Yeah. I would say that. I know it is not the exact same thing but I spend a lot of time thinking about it. I kind of wonder if on some level, it's how people who are diagnosed with AIDS in the 80's feel.
Tammy: Yeah.
In this episode, we hear from John “Tank” Miller of Delaware. A Family Advocate and father of a 19 year old with mental health challenges, John discusses his mental health advocacy through social media and how he uses “Tank Mentality” to provide those with mental illness encouragement every day. Become part of the Tank Mentality Movement: Follow on Twitter @tankmentality
Follow on Facebook: tankmentality/ Transcription Female Voice: Welcome to Ask the Advocate. Where mental health advocates share their journey to advocacy, and what it has meant for their lives. Ask the Advocate is a Mothers On The Front Line production. Today, we will hear from John 'Tank' Miller of Delaware. A family advocate and father of a 19-year-old son with mental health challenges. John discusses his mental health advocacy through social media, and how he uses Tank mentality to provide those with mental illness encouragement every day. This interview was recorded at the 2017 National Federation of Families conference for children's mental health.
[background music]
Tammy: Hello. So, we're just going to begin by asking you to introduce yourself, and telling us a little bit about your advocacy organization, and what you do.
John: My name is John Miller from Delaware. I am a father of a 19-year-old with mental health issues. I'm here today to talk about my movement, Tank Mentality.
Tammy: Yeah, I love the name. Why don't you tell us a bit about the name?
John: Well, about the name, the name actually was the origin of me, and that came from playing football. 9th grade year, I had a football coach who lined me up, and I was excited. I was just putting on pads for the first time as a high-schooler, and we ran a drill called Oklahomas. The object of Oklahoma is to not get tackled.
Tammy: Sounds like a good incentive.
John: So, I grabbed the ball, and the rest was kind of history. I ran through my whole entire team, and it got to the point where he was like, "Nobody can tackle you. We’re gonna call you Tank." And, that's when Tank was born.
Tammy: And how do you see Tank as transferring to mental health?
John: Because as a tank, you're in the front line.
Tammy: That's right.
John: On the front line, you're going to take some punishment. So, on the front line, you have to have that armor. So, I incorporated Tank as far as mental because everything in life is mental.
Tammy: That's right.
John: So, you can't do a thing without thinking of things. So, it’s just was one of those things where I'm like, "You know what? This thing is bigger than me. And, it started with me, but it's not going to end with me."
Tammy: Awesome. So, tell us a bit how you got involved in advocacy, to begin with.
John: Well, I got involved with advocacy, it was something that I was naturally doing. To give you a little background about me, I work as a restaurant manager. Because being a manager as you know, you're managing a bunch of teenagers and younger people, so you're always molding young leaders, and you're supervising them, but at the same time, you're kind of like, as I say, growing them. So, I actually listened to a lot of their challenges, their stories, and seeing some of their strengths and weaknesses, and I was using my advocacy to help them better. And, it was just something I was naturally doing, and I had the opportunity to do it as a professional. It was just like a smooth transition because I'm like I'm already doing this.
Tammy: Right. I love it that though because you say that like that's so natural. I'm not sure all restaurant managers are thinking of themselves and their role as developing young people. I think that's pretty remarkable that you, even at that point, that's how you were seeing it. I have to just point that out, I think that's remarkable and wonderful that you took that on.
John: Well, that goes down to my upbringing. My grandmother put that into me as a young kid.
In this episode, we listen to Andre Minett, a father of two, husband, and social worker. He discusses his experience advocating for foster children and his own experience as a father with a child with health condition. Transcription ATA 5 not edited
[background music]
Female Speaker: Welcome to “Ask The Advocate” where mental health advocates share their journey to advocacy and what it is meant for their lives. “Ask The Advocate” is a Mothers On The Front Line production. Today we will hear from Andre Mina, a father of two, husband, and social worker. This interview was recorded at the 2017 National Federation of Families for Children's Mental Health conference in Orlando Florida. During this particular recording, you can hear music and noise in the background from another event in the hotel. Please don't let this noises distract you from Andre's story.
Tammy Nyden: So, I'm just going to ask you to introduce yourself. Tell us a little bit of who you are and then the kind of advocacy work that you do.
Andre: Okay. My name is Andre Minett. I've been a social worker since about 2002. Definitely, this is what I do because this is the only thing I'm good at.
Tammy: I doubt that, but, okay.Andre: So, I've been working with children especially since 2002, right from Miami, D.C., now, here in Florida. I've been doing this work kind of a long time. It's funny when I look at my resume, and then I'm like "man, I'm old."
Tammy: That happens quickly. Doesn't it?
Andre: Yes. My oldest son is about to turn four, my youngest son just turned two. I've been married for seven years. That's kind of the highlight of my career, really.
Tammy: Right, right. Those are fun ages, too.
Andre: Yes. That's where the real work begins, you know.
Tammy: Yes.
Andre: That's where you understand everything you have already done, you know.
Tammy: That's right.
Tammy: Tell us about your advocacy work.
Andre: So, I've been advocating for children for a long time. You almost don't even look at it as advocacy, it's just something that you've been doing for a long time. I've been working in foster care. I began my career working in foster care and so to advocate for a lot of those kids who really didn't have parents who were able to advocate for them. I became their parent. I've been training foster parents on how to raise kids, even though, I was about twenty-two years old and telling a fifty-year-old woman – and men - how to raise their kids. It's kind of raising their kids, raising my kids, that they have custody of. The way we kind of wanted and for them to be ready. It's kind of hard too, because, you know, you have to set a standard of how you raise your own kids. You have the ideologies and all that stuff, but, you know, when you say that to a parent, who've been spanking their kids for a long time, like "don't touch my kids", you know? Yet I do it in the most professional way as possible. But, you know, you check on them, and you do things like that. So, I've been advocating for foster children. At one point I had my own mentoring agency, where I took kids in a city who were underprivileged, and kind of raising them that way because the Foster Care System, you kind of had the whole zone, what you can do and how you can do it.
Tammy: Right. Can you talk a little bit about working with the foster kids? Where are the areas were they were really needed an advocate to help them out? I'm sure there's many. Just pick a few.
Andre: I mean, even in the court systems, where those custody battles of determining parental rights for adoptions. So, a lot of the foster parents and the parents, they have to kind of navigate through that and think, “look, what is the best thing for these kids?” Because that's really all came down to. It's kind of, having everyone see eye-to-eye. So the court system, you didn't have to advocate within the system of the foster care system because I was privileged to be a part of a therapeut...
In this episode, we listen to Cheryl who overcame and found the new Cheryl. This mother of three shares her powerful story of overcoming trauma and serious illness to advocate for her children with special needs. Please be advised that this episode contains discussion of sexual abuse and a suicide attempt. Transcription Voiceover: Welcome to the Just Ask Mom Podcast where mothers share their experiences of raising children with mental illness. Just Ask Mom is a Mothers on the Frontline production. Today we will hear from Cheryl who overcame and found the new Cheryl. Please be advised that this interview contains some content that may be disturbing or upsetting to some of our listeners. Also, this recording was done at the 2017 National Federation of Families for Children's Mental Health Conference and there is background noise from another event taking place at the hotel. Please do not let the background noise distract you from Cheryl's story.
Tammy: So hi, tell us a bit about yourself. Before outside of mothering, what are your passions your dreams?
Cheryl: I'm a mother of three and my youngest had the unique passions I should say because everybody thinks that everybody have a disability. Some of them you can see it and some of them you don't.
Tammy: That's right.
Cheryl: My passions are education awareness and I'm learning that I have more passions as I'm going through my journey and each journey is different. My favorite thing to do, I picked up sewing crocheting and learning how to relax.
Tammy: Yes. That is not so easy. Ironically it's not so easy, right?
Cheryl: No, but it is and you would know why it's not easy.
Tammy: That's awesome. And so I want you to pretend that you're just talking to just the general public is getting to hear what you have to say. What do you want them to know about your experience? What do you want them to understand?
Cheryl: I am a 45-year-old African American and my two kids, my two oldest are 25 and 21. So the way I raised them was totally different than when I raised my 15, soon to be 16. Each of my children they saw experience of me, but my sons saw the worst.
I was in an abusive relationship. I'm originally from Philadelphia but I went down south and I found out that all my life I was a caregiver and I didn't know how I'm just it doesn't mean nothing. I was taking care of me. I was taking care of my kids, I was taking care of my husband, taking care of my mom, my great aunt.
You know, anybody, its just everybody would come and say, "You know how to be a caregiver". So in my bottom, in my journey, when I was going through my abusive situation with my husband I just said, "When I hit the bottom, time to go" I just up and I left thinking that my son will need counseling for me just up and left.
I said, "He's going to need that because he was so young he don't need nothing" I learned that he was-- his unique gifts was coming out and I didn't know what this is or anything and nobody wouldn’t tell me what it was.
And I have all these questions and answers and nobody. So, my mom always taught me if you don't know do your own research. Don't believe what other people say, do your own research.
Tammy: Right, good for her by the way. That is pretty awesome but go ahead.
Cheryl: Yes, so I started doing my own research. I didn't know what IEP is. I didn't know why they did all these tests and everything else. The first thing I had to do is stop blaming me, I guess. As a mother that's the first thing we do is blame.
Tammy: Yes it is.
Cheryl: I was in a relationship. He beat on me because of that. I didn't take all my medicine, all my vitamins and everything. As that went on I found out that it wasn't. So I find out that I went to therapy. Don't think I'm crazy or nothing but I start seeing my mom and my dad.
Now my mom and my dad died in 1994 and my dad died in 1981. This is now 2008 when I'm seeing and I'm actually-- they are actually talking to...
In this episode, we listen to Suzette Southfox, a Southern California parent of a 19 year-old son with depression, anxiety and Autism Spectrum Disorder. She tells us about her over ten-year journey with children's mental health. She discusses the importance of honoring the strength of our children and others with depression who fight each day to get out of bed. Transcription Voice Over: Welcome to the Just Ask Mom podcast, where mother shared their experiences of raising children with mental illness. Just Ask Mom is a Mothers On The Frontline production. Today, we will listen to Suzette Southfox, a Southern California parent who lives with her 19-year-old son who has depression, anxiety, and autism spectrum disorder. She has been on the Children's Mental Health journey for over ten years now. This interview took place at the 2017 National Federation of Families for Children's Mental Health conference.
Tammy: Just tell us a bit about yourself.
Suzette : Sure. My name is Suzette. I am a tired mom. I work in the Behavioral Health Field in Southern California. I'm an artist and I'm a writer and a performer. I love to communicate and chat with folks and and create art when I can. Don't get a lot of chance to do that these days but that's really what brings me joy.
Tammy: Oh, that’s really great. That's awesome. What kind of art you do?
Suzette: I do a lot of reflective art. I do a lot of spoken word poetry.
Tammy: Oh, wonderful. Yeah.
Suzette: I do spoken word but I don't have a whole lot of time to do that. I recently did something for a friend of mine who was just ordained as a Unitarian Universalist minister and I was, I was honored to be part of the ordination and I got to do this, it was fun.
Tammy: That's exciting. That's awesome. I want you to pretend that you're talking to parents who are just beginning the journey. They just received the diagnosis for their child of a mental health condition or maybe they even haven't discovered a name for what is going on yet, they're just trying to figure out how to help their child. What would you say to people with that experience based on what you go through?
Suzette: That's a wonderful question and out of all the people that I would like to talk to - and there are many, many that I would like to speak with - the family that's really finding themselves newly in the world of childhood mental health and behavioral health issues, I would love to talk to them and I would love to tell them that they're not alone even though they feel like they're alone. They're in a very special club which is one that not a lot of people want to join, but they find themselves in.
Tammy: Right.
Suzette: One of the things that I did not get early on and my son was diagnosed around nine or ten years old with ruled out pediatric bipolar disorder and things were very difficult. It wasn't until he was 16 when the psychiatrist said, "Was he ever tested for autism?" We said, "Are you kidding me?" So, people, weren’t asking the right questions, but once we found ourselves in the world of IEP's and special ed programs and all of this, we never met another parent. None of the programs ever had, "Here's information for your parent," or you would think that the psychiatrist or the psychologist would say, "Here's your brochure. Welcome to the world of pediatric mental illness. Here is your road map." They don't give you one.
Tammy: Absolutely not.
Suzette: No, they don't and if you're lucky enough to have someone with lived experience, you may get a road map but it's so challenging. Finding those other parents and finding what is available is so difficult when you're dealing with just the stress and the crisis. I was shocked to learn in my area that there was a whole guide for all of the programs and services but it was for other providers. It wasn't for families and it took me to get into working in the field to actually discover this.
In this episode, we listen to Shanta, a mother of three, clinician, advocate and proponent of self-care. She discusses raising a daughter who struggles mood disorder and suicidal ideation. Transcription [Music plays]
Voice over: Welcome to “Ask the Advocate” where mental health advocates share their journey to advocacy and what it is meant for their lives. “Ask the Advocate” is a Mothers On The Frontline production. Today, we will listen to Shanta, a mother of three, clinician and advocate. This interview was recorded at the 2017 National Federation of Families for Children's Mental Health Conference in Orlando, Florida. During this particular recording, you can hear music and noise in the background from another event at the hotel. Please don't let these noises distract you from Shanta's story.
Dionne: I want to say thank you very much--
Shanta Hayes: Thank you for having me.
Dionne: -- for agreeing to the interview, especially, on the spot. Would you like to introduce yourself?
Shanta: Hi. My name is Shanta Hayes. I'm a MSW, a mother of three, an advocate and proponent of self-care.
Dionne: Oh, proponent of self-care. We have to talk about that. So, Shanta, tell us a little bit about your advocacy journey. Your mom-advocate journey.
Shanta: My middle daughter is 14 years old and we started noticing some things that were just not quite right or on par with her developmental milestones. And so, we took her to the pediatrician. “Oh, everything is fine and it's well within norms.” And it was well within norms for a while until it wasn't. And then it started to manifest itself behaviorally. But what we found out eventually was that she has a diagnosis of ADHD and major depressive disorder. Her diagnosis have led to some challenges in school for her and that's how we first noticed it. We noticed she was having trouble getting her homework done and she was having trouble sleeping. She was having trouble just understanding the material and we thought, "Whoa! What's going on?" So, we've moved from a diagnosis of ADHD and major depressive disorder to now. We also know she has some processing issues. So, after we visit the psychologist and we've done all the testing, it's like, okay, she has some working memory issues and those things aren't necessarily solved with medication or behavior plans. So, we're now going to the neurologist and checking with the endocrinologist to make sure it's nothing hormonal. But the thing is my advocacy journey is always making sure my child is first in knowing, letting her know that we will put her needs first but that we'll also take into consideration how she's feeling. So, therapy-- we go to therapy for the depression. But she's not a fan of talk therapy. So, we're looking at other therapies now. It's like, okay, drama therapy, play therapy because those are modalities that she's really interested in. Because I need her to know that even though I'm the one making-- setting the appointments, she's the one going to the appointments. And if she's not engaging in one way, we need to find a way that works for her. So, we talk to her and we ask her, "What do you want to do? How can we make this work for you?" So, I'm letting even my 14-year old child know that her health is in her hands.
Dionne: This is the self-care advocacy.
Shanta: So, I need her to be an advocate for her health. I want her to know that she has a say I think a lot of people don't take that into consideration. I think we try and force a lot of different therapies or medications on our children and we're not really listening. We need to be very aware of how we allow them to engage in their own medical mental health. So, that they don't develop a sense of “I have no choice in this process”. And that's how we work with her.
Dionne: So, you said you have a MSW. Did it precede or did this come along with your journey with your daughter? First of all, tell me a little bit about who you were before you became m...
In this episode, we listen to an advocate with MomBiz Boss and a mother of children who experience developmental and mental health challenges. She speaks about being a mother of color and the experiences of raising children with both visible and invisible disabilities. Advocacy organizations discussed in the Podcast: National Federation of Families for Children’s Mental Health - A national family-run organization linking more than 120 chapters and state organizations focused on the issues of children and youth with emotional, behavioral, or mental health needs and their families. It was conceived in Arlington, Virginia in February, 1989 by a group of 18 people determined to make a difference in the way the system works. https://www.ffcmh.org/
Younger Years and Beyond - A local chapter of National Federation of Families for Children’s Mental Health that focuses on mental health and behavioral health challenges for children starting at pre-school through beyond. https://www.facebook.com/theyoungeryearsandbeyond/
Zaria’s Song - We Provide Support & Resources to Parents and Caregivers with Children Experiencing Physical, Cognitive, Behavioral and Mental Health Challenge http://ateducational.wixsite.com/zariassong
Transcription [music background]
Women’s Voice: Welcome to “Ask the Advocate” where mental health advocates share their journeys to advocacy and what it has meant for their lives. “Ask the Advocate” is a Mothers on the Frontline production. Today, we will hear from Shanta, a mother of three, a clinician, and an advocate. This interview was recorded at the 2017 National Federation of Families for Children's Mental Health Conference in Orlando, Florida. During this recording, you can hear noise in the background from another event in the hotel. Please don't let these noises distract you from Shanta's story.
Dionne: Hello. Thank you very much for agreeing to do this. Would you like to introduce yourself?
Teresa: Sure. Thank you very much for having me. I'm Teresa Wright Johnson, and I will say that I'm a mother first and then an advocate. I believe motherhood is very challenging as a business, so I'm kind of known as an advocate and a MOMBiz Boss, and we'll talk about that later. But I'm a mom of children that were born with developmental challenges as well as physical challenges and children that have mental health challenges, learning disabilities, and more. And I advocate for them.
Dionne: And you advocate for them. So Teresa, tell us a little bit about your advocacy journey.
Teresa: So my journey began-- I'm the mother of four children. I bore four children. Unfortunately-- but still, fortunately, have one living child. So I had several children that died very early on when they were born. And then my other two children were also preemies. In coming-- you know this is November. This is National Pre-maturity Birth Month-- Awareness Month. A lot of people don't know that. And with premature children, sometimes you have greater risk factors. And some of the risk factors that happened and that were indicated with my first child who was Zaria-- and I have do so much for Zaria in her name. She was born with various disabilities, more physical and cognitive. She had cerebral palsy as well as metabolic disorders like mitochondrial syndrome. She also had seizures, low-birth weight, feeding issues, mobility issues, just so many different issues. But guess what? That did not sway me. I wanted to be a mother. And once I found out I was going to be a mother to Zaria, I started to getting training at the hospital--
Dionne: Oh, wow,
Teresa: -- so that I could be the best advocate for her. So over the years with Zaria, I started my own support group for mothers of color called Special Treasures, because I feel that our children are not just special-needs children. They are special treasures. They are treasures that open us up, expand us, push us way beyond our comfort zones, and stuff.
Tiwanna Bailey, the founder and CEO of HYPED4U, a mentor and advocate for mental health and other disabilities speaks about her advocacy journey.
In this episode, we listen to Fidelia from Northern California. Fidelia has three children: two sons with behavioral challenges and a 11 year old daughter with anxiety. She shares her journey of mental illness, motherhood, incarceration, and advocacy. Transcription [music]
Women’s voice: Mothers On The Front Line is a non-profit organization founded by mothers of children with mental illness. We are dedicated to storytelling as a method of both children's mental health advocacy and caregiver healing. Our podcasts consist of interviews of caregivers by caregivers out in the community. This results in less polished production quality, but more intimate conversations rarely available to the public. Caregivers determine how they are introduced and the stories they share. We bring these personal experiences to you with the aim of reducing stigma, increasing understanding, and helping policymakers recognize and solve the real unmet needs of families dealing with America's current children's mental health crisis.
[music]
Tammy: Today, we start a new format for Mothers On The Front Line called Ask the Advocate. In this series, we hear from mental health advocates about their journeys to advocacy, and what it is meant for their lives. I am pleased to be speaking to Fidelia from Northern California today. Fidelia has 3 children, 2 sons with behavioral challenges and an 11-year-old daughter with anxiety. She also experiences mental health challenges herself.
[music]
Tammy: Hello. Tell us a bit about yourself and the kind of advocacy work that you do.
Fidelia: Um, well, I'm a mother of 3 children, 2 grown sons, and 11-year-old daughter. I'm a mental health advocate for Alameda County in Northern California.
Tammy: So, how did you become an advocate? What got you involved?
Fidelia: I had to advocate for myself and before I could learn to advocate for my children, I've been undiagnosed for most of my adult life. I got diagnosed at the age of 35 that I was bipolar, I had PTSD, and I suffered from severe depression. Prior to that, I didn't believe anything was wrong with me. But so many challenges that I had on the day-to-day basis, making good decisions, healthy decisions, became overwhelmingly just non-existent. I kept ending up with really bad results no matter what I chose to do, and I didn't understand why, and it was continuous. And so, I started to self-medicate, pretty much just, you know, didn't know what to do, I just knew that there was nothing wrong with me. My daughter was taken from me twice. Finally, I was just like, you know, there's got to be something wrong here because it doesn't matter what I do, nothing's working out well. I keep ending up in these terrible, you know, situations with, you know, not very good results. And so, there's got to be something, I need to talk somebody. And so, they came to me and told me, "You know, we're going to adopt your daughter out,
Tammy: Oh, gosh!
Fidelia: We're not going to give you services." I was in jail as a result of poor choices again. I was like, "You know what? If foster care's going to be the best thing for my daughter right now, I think that's the best thing going because, right now, I need help. I can't be a good parent if I'm falling apart, and I need somebody to help me learn how to help myself." That's where advocating came in because I had to advocate to get my mind right, to get my life right. And in order to be a good parent, I needed to be straight. So, I was given an evaluation, a psychiatric evaluation, because I requested that. And then, I requested a therapist. They gave me a therapist. And then, I started seeing a psychiatrist, then they prescribed me medication. And once I started taking medication and talking to my therapist on a regular basis, things completely changed. I caught up with myself. I caught up with my mind. I was able to process feelings without acting out impulsively, compulsively,
Today we speak to Bree Jackson, a mother and autism advocate from middle Georgia who has a parent support chapter called Puzzle Pieces of Love.
In this episode we listen to Kaytra MacDonald, a mother from Delaware and Family Peer Supporter from Champions of Children with Mental Health.
In this episode, we listen to a mother of three children with mental health diagnoses who works as a Family Partner with North Carolina Families United. She discusses the barriers families face when trying to get their children services and her own experience of moving her family to another county in order to get mental health services for her child.
In this episode, Nate tells us about his journey adopting his young son from the foster system and how the trauma of his son's early life has left a complicated matrix of diagnoses.
Transcription Voice: Welcome to the Just Ask Mom podcast where parents share their experiences of mothering children with mental illness. Just Ask Mom is a Mothers on the Frontline production. Today we will speak with Nate, an adoptive single Father of 8-year old Ricky. Nate is a military and railroad veteran and lives in Iowa.
Tammy: Tell us a bit about yourself before or after you had your son, just tell us a little bit about you?
Nate: Back in 2014 I chose to-- well I guess I should go back even further—when I was 30, I told myself that if I wasn't married with 2.5 kids by the time I was 40, it was time to do something. So I did something and when I was 40 in 2014, I got license to adopt. The end of October in 2014. And that's when the road started. A road that I had never been down and very few people in my family ever have either. Including my cousin in Arkansas who is a Special Ed teacher. Prior to that I've been a locomotive engineer for 20 years. Worked all over the country. Before that I was in the military. I'm a military veteran. I was a medic in the military. I had that experience but none of that prepared me for what was to come when I entered the adoption world and the various spectrums of which you would encounter.
Tammy: Okay. So pretend you are talking to the public, or you're just telling people who haven't had these experiences that you've had, what do you want them to know?
Nate: Well, foster kids, they're in a whole different class and you often hear, these kids are damaged, or these kids have baggage or these kids are bad kids even. The stigma that follows them and none of it is their fault. The public, in general, seems to block out the fact that these kids come from very, very bad situations, and because of that their minds have been reprogrammed in all essence to survive. And that's where a lot of these behaviors come from, and that's what, us, as parents struggle to reprogram. If you can imagine a Rand McNally map of Missouri when a child is born. You have all of those highways going everywhere, well that's a child's brain when they're born. Once you place trauma, physical abuse, sexual abuse and every other avenue on top of that, you might as well take all of those highways on that Missouri map and throw them away and you could just draw four lines that do not intersect each other, that end in nowhere and those four lines are survival, food, shelter, safety and getting their way - what they think is best for them. Those four little highways, that is it in the entire state that end nowhere, that don't talk to each other, and it's up to us as the public, not just the adoptive parents or foster parents, it's up to us as the public to build all those little highways back together again.
Tammy: That's right.
Nate: To attempt to rebuild that entire map. Now, it's a little bit easier when you get them when they're pretty young, not much, but a little. But it falls back, it just takes a lot, a lot, a lot, of resources to do so.
Tammy: Right. Tell us about your situation. How did you come about meeting your son and having your son and what was it like in the beginning?
Nate: It was actually very interesting. The end of 2014 and through most of 2015 I had set my home study out on various kids all over the country, literally, that I was interested in but I never really, never got considered for them. Even once they had told me that they even had no other home studies being considered. But just as I was kind of losing hope thinking I had wasted my time getting licensed, I got a phone call. It was almost to the day - the anniversary of when my brother died in 1999. I think it was November 27th of 2015 my brother had taken his life, the end of '99.
Tammy: I'm so sorry.
Nate: I want to say the 26th and his name was Ric...
In this episode, a mother shares her experience of the recent diagnosis of her son with Asperger's Syndrome. She discusses the journey to the diagnosis and how well-meaning, but often misguided advice from family and friends can make this already difficult journey all the more painful. She discusses her son's experiences being bullied in school and the pain of watching your child grow up without friends. Transcription Voice: Welcome to the Just Ask Mom podcast where mothers share their experiences of raising children with mental illness. Just Ask Mom is a Mothers on the Frontline production. Today we will speak with a mother whose son was recently diagnosed with Aspergers.
Tammy: Tell us something about yourself.
Mother: That makes it really tough.
Tammy: I know.
Mother: Right? You think it’s all easy and then you are like…. I’m a middle age woman that is a mother of a single child. We’re on the path for a diagnosis of Asperger’s. This was a recent diagnosis, or process of a diagnosis, for us. It was a bit of a shocker. Prior to having my son, I nannied for 17 years, so I was around kids, help raise kids, manage kids. My son came along. Everything seemed fine, until now, when we really started to notice some differences and the fact that he is very routine-oriented. And just some of the changes that we’ve seen compared to the other kids. But this is tough.
Tammy: It’s tough.
Mother: Man.
Tammy: It is.
Mother: My favorite thing to do - technology. It is always something with a cell phone or the computer – a gadget of some sort. So, that is what I spend a lot of time doing, that and taking pictures.
Tammy: So that’s what you enjoy doing.
Mother: My son lives in front of the camera. Poor kid. I love him to death but.. he’s like, “Hey, you got that on my face again?”.
Tammy: It’s nice to share a passion, right?
Mother: It is.
Tammy: So that part is really good. So, you are going through this with your son. I want to know what you would like other family members to know. Who you know, because we have a lot of people out there who are going through this and they probably feel the same way. What, you are the one in the middle of it, what do you want family members who they mean very well but don’t- aren’t in the middle of it. What do you want them to know? What would you want to say to them?
Mother: So, let’s go back probably about seven months ago, when we hit a rough spot with our son, who had a day where he was so overwhelmed that he couldn’t function at all. And at that point I knew we needed to do something. We needed to figure out what was causing all the behavior and triggering this because he literally was just a body. His eyes were glassed over. He just would sit and cry. He couldn’t get dressed. The thought of going to school made him physically sick. This is a kid who up until this point loved school.
Tammy: Really?
Mother: That’s when I intervened and said, “Okay, you know, we got to do something”. After talking with family members-- they were giving great suggestions, you know, trying to help --but we knew we weren’t on the right path. So we intervened with a therapist who has worked really hard with our son. With a suggestion of a friend I looked at what we felt potentially was Asperger’s and looking at our son knew that he had a lot of the same characteristics. A lot of the same things - looking back of course as a parent you feel really guilty. Because you didn’t see these things sooner but getting that groundwork work with that therapist helped me immensely sit down with my parents, with my in-laws, with my husband, with my siblings, and talk to them about what we’ve seen, what we see going forward, how we are going to try to approach things for him. Because it’s not easy. It’s very stressful. His stress is also my stress. And when he is worked up, then I can’t relax and it just throws the whole family dynamic off. Of course we got the “it’s because he is an only child?
In this episode, we speak with a mother of three. Her eldest son has Disruptive Mood Dysregulation Disorder (DMDD). She discusses how the condition affects the family dynamic and what a good day looks like. Transcription Voice: Welcome to the Just Ask Mom podcast where parents share their experiences of mothering children with mental illness. Just Ask Mom is a Mothers on the Frontline production. Today we speak with a mother of three. Her eldest son has Disruptive Mood Dysregulation Disorder (DMDD).
Tammy: So why don't you tell us a bit about yourself?
Mother: I have 3 kids, 3 boys, ages 1 to 12. My oldest son has a mental health diagnosis. He's right now diagnosed with the DMDD. Disruptive Mood Dysregulation Disorder. He was severely violent, had to be removed from the home for a total of about a year and 8 months, 2 different placements. Now he's in the home, he's non-violent for the most part but I have worked and then trained to restrain him, if need be. And I also went to school and have my Bachelor’s degree in Human Services. I switched to human services because of him.
Tammy: Very good. So, before we start, I'm going to ask you to tell us a little bit about yourself before or beyond mothering?
Mother: Well, before mothering, I was a teenager. So there wasn't a whole lot going on. But it wasn't until recently that I started to decide that other than mothering, I needed some hobbies. Most of my time was just spent mothering. So, I decided to help with just giving myself something to do other than the kids. I'm really into running. But I don't like running in the cold. So then I had to figure out something to do outside of running to really get rid some of my stress so, then decide to start painting and like kind like those wine and canvasses people go to. But I don't drink, so I find them on YouTube and I do them at home. And so, for about their hour worth of work it takes me about 3, but I do the paintings at home.
Tammy: Oh fun.
Mother: And so I really like [it]. I do painting and running.
Tammy: Very nice. So, I want to ask you to pretend you're talking to your coworkers, right? What would you want them to know about your experiences as a mom?
Mother: Just how much time and effort it puts in, not with just my mental health son but all of my children and that trying to balance, making sure all the kids have the attention they need. I don't think anyone realizes outside of our household really what it takes to raise a child with mental health needs. What a typical night looks like in our house, it's not just having fun and getting through homework, it's a very regimen routine. We have to stay very on top of our routine, we can't just fly by the seat of our pants. Everything is very much -- 3 out of 5 nights during the week we have appointments. The other nights are ball practices. Everything is laid out on calendars. We can't go off of the routine otherwise we spend the whole night with a kid that's having a meltdown because we went off of a routine and he didn't expect that. It's a very much different type of household and very much a different type of atmosphere having a household where there's somebody that, you know, has a mentality of a 4-year-old and he's 12.
Tammy: How do you keep that schedule because a household is not an institution, things happen -- like you have to cook dinner and so on. How do you try to maintain the schedule? Can you give examples of how it's hard to do that at times?
Mother: It is extremely hard to do. It means a lot of times where I'm one-on-one with my son and we both are left out of doing things as a family. On a lot of times, it's just me and my oldest son. We're together if he's having a rough day-- it's me and him having a rough day together. It's me and him that are together all of the time. Luckily, I am blessed with having an employer, and it's taken me 12 years to find an employer that completely understands. I work for a school district where the principal came fro...
In this episode, Alissa shares her journey as a single mother raising 5 children, both biological and adopted through the foster system, and having a wide range of special needs, including physical, intellectual and emotional disabilities. She discusses how to stay centered in the tough times and how self-care is required before we are able to give to others, including our children.
Transcription Voice: Welcome to the Just Ask Mom podcast where mothers share their experiences of raising children with mental illness. Just Ask Mom is a Mothers on the Frontline production. Today we are speaking with Alissa, a mother of five children, including biological children and children adopted through the foster system. She works in Human Services helping other families with mental health needs as well as other special needs.
Tammy: Well, why don't you tell us a little bit about yourself, to get started.
Alissa: My name is Alissa Tschetter-Siedschlaw. I am a mom of five. I've been a single mom for ten years, although I recently got engaged.
Tammy: Congratulations.
Alissa: Thank you.
Tammy: Oh, that's exciting.
Alissa: My children range in age from 24 down to 9. I have both children that are biologically born to me, and children adopted through the foster system, with a wide variety of mental health, developmental, behavioral, and medical special needs. I work full time, well, actually no, I'm part time now, in human services, helping other families. I also do professional theater, by contract.
Tammy: I didn't know that. That's really cool.
Alissa: You didn't? I finished a contract recently and I have a Shakespeare contract coming up in the summer.
Tammy: Oh, how fun.
Alissa: Yup. That's what my training was originally in, theater performance.
Tammy: Well, my next question - and you might have partially answered this - what are you passionate about? Tell us a bit about you, outside of, or before mothering.
Alissa: I am passionate about arts. I'm passionate about advocating for those who can't speak for themselves. I was before this. I'm passionate about taking care of the earth, taking care of other people, treating people the way you would want to be treated yourself, trying to make a difference, and fighting against - whether it's discrimination, or fighting against systems that don't understand where loopholes are for people, or whatever. I've always been passionate about those political things and those kinds of things. I love lots of forms of art and exercise. I like to exercise. That is my medication. So yeah, those are the things.
Tammy: Great. Well, that's awesome. So I want you to pretend that you're talking to -- In your case, you have five children, with multiple special needs, so I'd like you to pretend you're talking to a parent with, maybe two or three kids that don't have special needs. And try to give them some insight into what are the extra challenges.
Alissa: I think, it would be almost impossible to explain to someone else in that circumstance. What I would probably welcome them to do is come see a day in my life, or experience another family like mine. Because there's a lot of things you don't know until you know. A lot of very compassionate, very loving people, can say very callous things, because truly, - it's never crossed their mind. They've never thought about the kinds of problems we might have before. So sometimes, I try to explain from a place of education - without being patronizing- sometimes, just even in gaining compassion, when I have one child that I adopted, who has a tremendously tragic story. There's not many people you could explain such a rough beginning and not pull at their heartstrings, and then, say all the things that her life is like now, and how it is to go home to a child, who's functioning much slower than her physical size, who might have a psychotic break, and bite you, and attack you. People have a hard time even wrapping their head around those things,
In this episode, a mother and grandmother from Iowa talk about the difficult journey of changing diagnoses, medications, and symptoms during the early childhood of their son and grandson who has Tourette's Syndrome, OCD, and ODD. They discuss the importance of support groups, recognizing your own needs (especially when they might be different than the needs of your family members) and making sure to honor them. In their case, the need to be social and get out with other people.
Transcription Speaker: Welcome to the Just Ask Mom podcast where mothers share their experiences of raising children with mental illness. Just Ask Mom is a Mothers on the Frontline production. Today we will speak with a mother and Grandmother from Iowa. Today they will be speaking about their elementary school-aged son and grandson who has Tourette’s Syndrome.
Tammy: Today we're doing something a little bit different. We have a mother-daughter pair. I'm going to ask you both to just tell us a little bit about yourselves?
Mom: Okay, I'm an Iowa mom. I have a son who has Tourette's, OCD and ODD - major diagnosis there. Yes, some other ones too. He's at grade school and we live in Iowa.
Tammy: Great.
Grandmother: And I'm the grandmother of a grandson with mental health issues and I'm here to support my daughter and my grandson.
Tammy: Great. So before we get started, I'm going ask each of you just to tell us a little bit about yourself before mothering. What were your passions? Or outside of mothering, what do you enjoy or when you fantasized about the kid's going off and you having a moment to yourself, what would you do? [Laughs] So just what's interesting to you as a person?
Mom: Oh boy. [Laughs] Let's see. I used to like to sleep. [Laughs] Like I would sleep, stay up watching movies on TV and then go to bed late and stay up late and then sleep in late.
Tammy: That sounds so nice.
Mom: Yeah. [Laughing]
Grandmother: And I as the grandmother, prefer reading. Used to enjoy dancing but as the kid's say, "Oh, yuck! Not that."[Laughing] and gardening. I like to garden and just be current. Go on little road trips. I do fantasize having a palm tree in my front yard and a big lounge chair on each side.
Tammy: That does -- especially during the winters. That's a very attractive thought.
Grandmother: Yes. Not, not a real palm tree - artificial - so I don't have to worry about it dying but --that would be happy. That's looking at happy in my eyes. Joy.
Mom: If going ‘happy’, I want the in ground pool at the backyard. [Laughs]
Tammy: [Laughing]. That sounds good too.
Grandmother: Just a fantasy.
Tammy: Awesome. Well, I want to ask you to pretend you're talking to families who are feeling lost. They don't have a diagnosis yet for their child but they know something's going on. I'm wondering if you could tell us what would you say to those mothers? What would you say to family members or relatives, grandparents? As families are going through this and trying to determine what's going on with their child?
Mom: I would just say something that helped me was to just research, research, research. Again, the internet, I googled everything. You know and then we kind of fell into a support group that helped us. There was a children's therapy center. We didn't actually go there for therapy because our insurance didn't cover it. But we found out that they have a support group there on Saturday mornings. So we thought, you know, let's just go and try this and see if we can meet other people that have kids that may have issues that can help us and stir us where to go. And so that really was our saving grace.
Grandmother: That's true. I find -- getting into this in my estimation, doctors really don't know a whole lot. And each doctor you talk to has a different field of expertise. And they want to lead you down the path that they think you should go. Even though it may not be the right path. And so you'll go down that path and you realized nothing is ch...
In this episode, a Grandmother tells us about raising her grandson who experienced trauma and suffered from several conditions, including ADHD, anxiety, bipolar, and learning disabilities. Please note that this story discusses child abuse and may be triggering for some of our listeners.
Transcription Speaker: Welcome to the Just Ask Mom podcast where mothers share their experiences of raising children with mental illness. Just Ask Mom is a Mothers on the Frontline production. Today we will speak with a Grandmother who is raising a grandson with mental health and learning disorders.
Tammy: Okay. Alright. So just to begin, just tell us a little bit about yourself before or outside of mothering, just about who you are.
Grandmother: Okay. I’m a mother of two boys who are grown, and um, they seem to have a fairly happy life, one has moved back to go to school, and one of them is still living on his own. After my second marriage, my husband had a son, who was a substance abuser and he abused his young son when he was very small. And we took him, in fact we took him because his father asked us to take custody of him so he could get back at his wife for doing things he didn’t like. He didn’t really think we should take him, he just thought that this legal thing would make his wife afraid to talk to anybody. And we got the papers and our lawyer talked him into guardianship, which means you can make all decisions for the child, and when he was hit and really, and really only minorly, we said, “You don’t have to go back.” And he was very happy about that, and he recently told his psychiatrist that was the happiest day of his life. He was six at that time. We have had him now, and he just recently turned eighteen, and he’s moving into this town to live in supervised housing, because he has mental illness and he has intellectual disability. And so he needs to be supervised twenty-four seven, and they offer quite a bit of other programs, things for him to do like go to a parade, or go to the park, or—really not things that cost a lot of money, although occasionally they do, but they get passes to the fair and -- what not. And so this is his first day, and he’s very happy about that.
Tammy: Wonderful, wonderful. What would you like people to know about your experience?
Grandmother: I would like them to know that often, children only show the surface of what’s going, we sensed abuse but it was only later when he told us-- about a month later, he told us he had been sexually abused, about a year and a half later he told us that his baby brother who had died of SIDS was actually murdered. So he was keeping this all inside. We needed to get help for him, and I really would like mothers to know that, although it just breaks your heart to take a small child to be in residential treatment, that sometimes it’s the best thing and it’s definitely not a horrible bad thing. He was kind of like, “Bye, mom” (that’s what he called me already. They said he cried a little that night, but that’s all. And he learned so much in the various times he was in the residential treatment, and the last time he was in he got into a program that was for both mentally and intellectually problematic children. And I wish there was more because, to my knowledge, it’s one of the few places that has that, and he’s in a-- was in place that only took care of eight children.
Tammy: How did that help him? Like, what was positive about it?
Grandmother: One of the best things he learned was coping skills, which as a peer support specialist, I know is one of the first things you teach people who have mental illness is how are you planning on coping with this? It might just be cuddling with a soft warm blanket, it might be setting boundaries with other people that says, “I will not pull up with that.” It might be a warm bath, it might be running or doing yoga. Everybody has their own, but you teach the children that we are all unique,
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In this episode we speak to Paula, the adoptive mother of two boys from foster care. One son has PTSD, Trauma, and Autism. The other son has ADHD, Tourette Syndrome, and Anxiety. Paula talks about the importance of not taking your child's behavior personally, the gift of adoption, and the importance of laughter.
For a transcript of the podcast, go to https://mothersonthefrontline.org/podcast-transcripts/ Resources Mentioned in this Podcast 99 ways to To Drive Your Kids Sane by Brita St. Clair. - This little book is full of wild ideas and hysterical humor to bring the laughter back into a home with an emotionally disturbed child. Need a good laugh? This book will do it! It includes lots of "one liners" and silly, fun ways to help parents avoid anger around tough topics. Written by a very experienced and loving Therapeutic Mom with years of success helping tough kids heal. Transcription Female Speaker over music: Welcome to the Just Ask Mom podcast where mothers share their experiences of raising children with mental illness. Just Ask Mom is a Mothers on the Frontline production. Today we will speak with Paula, a mother of two adopted boys. One who has PTSD, Trauma, and is on the Autism Spectrum. The other son has ADHD, Tourette Syndrome, and Anxiety
Tammy: Well tell us a little bit about yourself.
Paula: Well, I'm a mom here in Iowa. We live in a semi little town but it's in a metropolitan area so we have lots of great things around us. I have been married twenty-eight years.
Tammy: Congratulations. That's wonderful.
Paula: Which is a long time. [Laughs]
Tammy: Yes it is. [Laughs]
Paula: Especially - I mean I am not quite fifty but still, we got married when we were twenty. I mean so we were late to the family thing. We wanted to wait, we didn't want to jump in. And for a variety of reasons being foster parents and adoption was the way that we decided to go. So we have two boys, they are now fifteen and twelve. The first one we adopted when he was three and a half and the other one was seven. So we are no longer foster parents. I did foster care training and stuff but we are no longer foster parents. Because of the level of needs that they both have, they need our full attention. So I am now a stay at home mom, but professionally I am rehab counselor and mental health therapist.
Tammy: Wonderful. So before we get started I always like to ask people about themselves before they were mothers or outside of mothering. So you told us a bit career-wise so just tell us a little bit about your passions and who you are before we get ....
Paula: Well I love lots of things - my husband and I joke that we are renaissance people so we like lots of little things. Before we had kids we were married a long time, which I highly recommend. I mean we got married young, we were twenty. But we didn't bring kids into our universe until year thirteen or something. Before we had kids though life was moving along beautifully, you know just the way it does, but it wasn't easy, actually my husband is a stage four colon cancer survivor.
Tammy: Oh wow.
Paula: So when we were thirty three, he was diagnosed with stage four colon cancer and at that time in 2001, less than five percent survived stage four colon cancer. So um we were one of that five percent and so that definitely informs the way that we view the universe. We're in year what? that's 2001- so somebody else do the math - fifteen years that he is still you know alive, healthy, we had no recurrence. We went through everything you know all the chemo, liver resection, all the worse things humanly possible. So for us every day is a gift even after fifteen years. We often joke that I should have been widowed - had I been widowed what would I have done? That is what we worked on. You know in therapy -- how do you deal with your life and literally I would have had a farm house with a bunch of foster adopted k...
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In this episode, Emily talks about her journey raising a young son with Tourette's Syndrome. She talks about the importance of community building on many levels, including strengthening relationships within the family and marriage, her church, her son's school, and the larger community. By educating those in their lives about Tourette's Syndrome, her son can be himself and feel part of a supportive and understanding community. She also discusses the importance of intentional planning of self-care and ways to make it happen.
Topics include: Tourette's Syndrome, Self-Care, Family, Community, Advocating for your child at school. Resources mentioned in this podcast: Tourette Association of America - (Formerly known as the Tourette Syndrome Association) focuses on awareness, research, and support. https://tourette.org/
The book: The Fringe Hours by Jessica Turner
Transcription
Speaker: Welcome to the Just Ask Mom Podcast, where mothers share their experiences of raising children with mental illness. Just Ask Mom is a Mothers on the Frontline Production. Today we will speak to Emily, a mother of a son with Tourette’s Syndrome, living in Iowa.
Tammy: Well, I was wondering if you could just start by telling us a little about yourself?
Emily: Sure, my name is Emily and I'm a wife and a mom of two kids. I have a daughter who's seven and I have a son who's nine, and my nine-year-old son has Tourette's syndrome. Tourette's syndrome is a neurological condition that causes a variety of motor and vocal tics. So, in my son's case he has a coughing tic, blinks his eyes, will have shoulder raises and that kind of thing. So, we have just had the diagnosis for a couple of years, so we're sort of new to all of this but he is a joy in our family and we're just really learning how to best care and best parent him.
Tammy: Awesome. So, before we get started I'm just going to ask you to step back for a moment and tell us a little bit about you either before mothering or outside of mothering, a little bit about you.
Emily: Yeah, I have a lot of different interests. My faith is a really important interest of mine, I just really enjoy being a part of a church and that's just a really important piece of who I am. I also really just love creating things so I love to sew, I love to bake, I love to make cards. They do have to have a finite ending to them.
Tammy: (laughs)
Emily: I’m not the scrap booker that can keep on going forever but I do love those short creative projects. I also love the Olympics and I'm a big Disney fan, it truly is my happy place. So, those are some of my passions and interests.
Tammy: Wonderful, thank you for that. I want you to pretend that you’re talking to other moms, what do you want them to know?
Emily: I would say that the thing that I would want them to know is how community is so important when you're the parent of a child with Tourette’s syndrome or any special need. That community is a place where you can get support and encouragement but it really just helps you be a super confident mom and to be the best mom that you can be to your child. So, I thought I'd share a few places that have helped me in building community. One of them is just within the family itself. I asked my son before I came here, “What's the one thing that I do as your mom that helps you as a person living with Tourette's Syndrome?” He said, “You just make it okay to have it.” A huge compliment from him, but just making sure that our family is a place that he feels safe and comfortable, that it's a place he knows he can let all of his tics out when he gets home from school, or he can talk to us about how his tics are making him feel. Building community within our family means spending a lot of time together and it's figuring out what that is. So, for us we love to play games together. We enjoy Disney together. (laughs). Traveling is a big bonding experience too.
https://mothersonthefrontline.org/wp-content/uploads/2017/04/episode-2.mp3
In this episode, a mother reflects back on her experience raising children with schizophrenia decades ago. She discusses the difficulty of coming to terms with the diagnosis of schizophrenia, how the National Alliance on Mental Illness (NAMI) Family-to-Family program helped her and her children through this journey and the importance of self-care.
Topics discussed include schizophrenia, agoraphobia, NAMI, self-care,
Transcription: Female Speaker: Welcome to the “Just Ask Mom” Podcast, where mothers share their experiences of raising children with mental illness. “Just Ask Mom” is a Mother's on the Frontline production. Today we will hear from a mother and active Mental Health Advocate. She has an adult son with early onset schizophrenia.
Tammy: So tell us about yourself?
Mother: Well I'm considered elderly now, not middle aged. [laughs] I have lived with severe mental illness in my family for close to 18 to 20 years now. I originally grew up in a small town in Iowa and was involved in everything that you could be involved in in high school. I got a college degree. Went to work for the federal government and raised through the ranks even though I was a woman. Because when I first started they didn't want women in supervisory positions and I eventually got into them anyway.
Tammy: That's awesome, thank you by the way from us women who come later, we appreciate all that you did to make the path.
Mother: Mostly, it was like two dollars and 40 cents an hour, that's what I've initially worked. And at that time I was unmarried and had a son. The choice actually was being on welfare or going to work and it was the same amount of money per month. So. It was interesting.
Tammy: So pretend you're talking to other parents who might not fully understand your experience. What would you want them to know?
Mother: Well, first of all, to take it easy on kids - especially the ones that have some special needs because they're scared out of their wits by what's happening to them. And they are always fearful that somehow you're going to turn them away or make fun of them or be ashamed of them. I just found that he needed me to always have a smile on my face - that you have to make a concerted effort, not ever to be mean to them because that ruins the trust. The focus of a lot of advocacy work that I do is to keep families together. And not to blame anybody, because this is an illness without blame. It's simply a medical illness and it's hard to adjust to it. So we have to kind of give ourselves a break there too because I can remember being in denial for a long time and not wanting to accept it, not wanting to let go of my dreams for my kids. Finally its almost like somebody goes ‘whack’ on your face. “Wake up! This is going on and you need to do something about it!” I can remember the first time I tried to tell someone that my kids had schizophrenia. I couldn't say the word. It took at least half a dozen tries before I could get the actual word out of my mouth. And then I started getting angry. You'll get angry because you'll run into a lot of people who simply don't get it and somehow think your kids have turned into ‘its’, they've lost their intelligence, they've lost their emotions, they’re some kind of an oddity and you always have to try to turn their attitude on that. So I'm just interested in making sure that kids don't have any more trauma than absolutely necessary if they have those special needs.
Tammy: So how are you doing right now? Do you think you feel like you're swimming? Drowning? Treading water at this moment?
Mother: Depends on which topic. I think I'm swimming as far as things are going in our family. With what's going on at the State Legislature and nationally and locally - I think we're drowning because we are under assault on so many things. So once again, depends on the topic.
Tammy: Yeah.
Anna discusses raising a son with childhood-onset schizophrenia on a Midwestern farm, the journey to the right diagnosis & medications, and what there is to celebrate.
Transcription: SPEAKER: Welcome to the ‘Just Ask Mom’ podcast where mothers share their experiences of raising children with mental illness. ‘Just ask Mom’ is a Mothers on the Frontline production. Today, we will speak with Anna, the mother of a son with early onset schizophrenia.
Anna: My name is Anna and I'm from the Midwest and … oh, gosh. I went to college for computer information systems, got my degree, worked for the railroad for a number of years in information systems and married a farmer. So it's quite a diverse life.
Tammy: Yes.
Anna: Yeah, that's a little bit about me.
Tammy: Very cool.
Anna: I always wanted to be a mom. Growing up, you know, I always imagined myself with five kids and when I got married to my husband, I mean, I just really imagined our life as a typical farm family, lots of kids and dogs and, you know, running around outside and life didn't happen that way.
[music]
So we have one son, and he was actually adopted from Russia. He was 14 months old and at the time. We always expected when you adopt a child from an orphanage situation like that that there's going be some catch up. There's going to be some things that you need to do to play catch up. Matthew always stayed behind, though. He never was able to catch up and working through that as he got older, more and more issues came out and come to find out when he was 13 he was officially diagnosed with early onset schizophrenia. [He] had symptoms starting at the age of eight and that was a very hard thing to accept as a parent, especially when it’s your only-- I mean, it's always hard, but when it's your only child and you've gone through so much to get this child and um-- I went through a pretty major grieving process, you know--
Tammy: Absolutely.
Anna: So the thing that I want other parents to know: when you're dealing with a child with special needs and that has such a serious illness, -- it's okay. It's okay to grieve, it's okay to grieve for that child that you had in your heart, that you expected, that you always pictured that you would have raised. That is a loss and you shouldn't feel guilty about grieving for that child, but then you have to move past that. You have to get to a place where you accept that child for who they are. It's easy to say and hard to do but once you get to that place where you have truly accepted that child for who they are and for their abilities-- although they may be different than what you expected, you-- you'll find that things are easier. You'll find that it's not as hard to accept where they're at and enjoy them for who they are and every day becomes easier.
Tammy: This is especially a lesson you have to learn in this particular situation but what you're saying is true for any parent.
Anna: Sure. Absolutely. For any parent, any child. You can have a child that is neuro-typical but they don't have the same likes as you do and they don't have the same interests as you do and you guys are polar opposites and you still have to accept that child for who they are. You may butt heads but you have to realize they are their own individual. Absolutely. I think for my husband, I’ll kind of speak to that little bit-- he's a farmer. He's a typical Midwestern farmer and grew up in a very sheltered environment, you know, didn't ever really have any exposure to the big city and diversity and things like that, and it was, I mean, he had it in his mind his expectations of his child would be that they would help him farm. They would grow up learning that and doing that and that wasn't something that Matthew could do. That was really hard for him to accept and as long as he wasn't accepting that, as long as he was fighting that internally, he was miserable. Once he was able to accept that, he could move on with his life and he could be happy and...