At Home with Autism: Recent Episodes
Q102 | Hubbard Radio
Jenn Jordan has always loved talking about her life with her son Jakob, who has autism. Here, she shares all the feels that come along with sharing space with someone who is different. It’s the journey they’ve taken together, finding ways to connect, love and laugh through all the challenges. At its core, this podcast isn’t just about parenting autism, it’s at the heart of the human experience that we all share.
Jakob talks about graduating from school and what that means to him. And then I try to figure out what he's laughing so hard about. This is one of the tough parts of dealing with unreliable speech...the disconnect when he can't fully communicate what's going on his brain and I have no clue and none of my questions get me any closer.
We record these podcasts when Jakob says we do. He'll just out of nowhere say "podcast room" and I know he has something to say. I think he had to work through some impulse before he got to what he really wanted to talk about. That happens. A lot. One of the moms from his hip hop group said they probably won't make it to caroling and he talked about it for a week. A lot. He starts the conversation with that and then we move on. I'm always fascinated by what he latches onto and often impossible to predict.
Jakob loves to dance and he really loves to sing. Luckily we have a lot of outlets for him to perform. And it's pretty obvious where he gets all his skills...
Jakob worked his first ever craft fair selling his cards and it was a huge success on multiple levels. Not only were people so kind to us, but Jakob showed some kindness to a couple young guys that reminded him of himself. So sweet.
Jakob had a party and invited some of his favorite people. There was fun and disappointment and making future plans. he's a busy guy!
We went to a wedding so I asked him if he wanted to get married someday. He has some definite ideas on that one and whether or not he'll be doing any dating anytime soon...
He is full of it today! All fired up and ready to talk...about musical preferences, a road trip to Grandma's and his hip hop teammates. His smile was huge the entire time and you can hear it. Doing this podcast makes him so happy!
We live in an Agri-Community and Jakob just loves it. He loves feeding carrots to the donkeys, sheep, and goats and he loves to volunteer. Recently, he joined some neighbors and he pulled some weeds...and he learned a couple life lessons in the process.
A conversation about 4th of July turns into a passionate discussion about toilet paper. And he is mighty passionate about his brand of choice.
He worries. A lot. Which means we have our share of repeating conversations. Over and over with the same questions and concerns. Not sure he ever quite feels that there's no need to worry, but we do our best to feel like everything is gonna be ok.
Mom is a big New Kids on the Block fan and usually goes to lots of shows when they tour. Jakob has never gone with before...but he says he's ready!
Jakob wants to talk about a lot of things this trip...planning his 21st Birthday Party, if he'll be drinking alcohol, and the shooting in Uvalde. Light stuff and heavy stuff and a mom who's just trying to navigate important topics that he definitely wants to discuss.
He brought home a flyer for a Fishing Derby. This is what a conversation sounds like when I'm not sure if he does or does not want to do something. This is what unreliable speech sounds like and what I do and to figure out what he's thinking and feeling and wanting.
A couple things here...you never know when Jakob's funny bone might get tickled. But when it does, it sticks and the funny thing will get talked about for a long time to come. Something happened at Disney that he still gets a kick out of. And he sings his favorite song from Willie's Roadhouse...you can't miss that!
Jakob is so excited about his trip to Florida to compete in the Dance Worlds with his hip hop team, Velocity. He talks about all the things he can't wait to do, what he's bummed about missing, and where we'll be staying. It's so great to hear him so enthusiastic...which he actually is most of the time. Happy guy.
It was a year ago when Jakob's grandparents got sick and we lost his grandpa. Whenever something sad or hard or upsetting happens, Jakob worries about it happening again. And he needs to be assured for days, weeks, moths, years, that it won't. And these conversations can pop up anytime...
Some days are harder than others. While I have no doubt that he has the words he wants to say in his brain, getting them out is just hard. That's apraxia. When the answer won't come, he'll say "I don't know" or "that's it" or "a lot". It's just what comes out when he really wants to say something else. The long pauses happen and I see him trying to find the words. At one point I ask him about what songs he dances to...he says "I don't know" and I wait for a few seconds. Then I ask him what his favorite song on the radio is and he ends up answering the first question. He works so hard...
Jakob talks about his hip hop group as they prepare to go to Worlds in Orlando. He has much to say and you can hear him try to get it all out. Communication has always been our greatest challenge and he continues to give his all to be heard.
As we talk about our first year in business, we have a few moments where I wait...and wait...and wait...for answers. I know that he has these answers to my questions in him, it just takes awhile for him to get the words out. I love these long pauses that give him the opportunity to be heard. It's not often that he's given this opportunity...well-meaning people fill in the blanks, make assumptions, or just disengage. It's a lesson in listening and a great reminder that I need to do more of it...
Recorded the week between Christmas and New Years, Jakob has a lot to say about his favorite presents. And even more to say about the new Spiderman movie. Jakob shares something that Mom had no clue he knew. So much power in the silence as he searches for the words to say what he's thinking...
Chapter 16 of the book I wrote and haven't published, yet. There's so much more of this story to tell but this was what I knew 8 years ago. I knew I lost a friend and I was afraid for myself. That what became of her could become of me.
He's trying to tell me something. I have no clue. I can't help. But I try. I can't imagine how hard this must be for him. His whole life. All I can do is be curious. And open. And not assume I know what he's trying to say. That's a start anyway...
I pull out the manuscript of the memoir I wrote 8 years ago. This is Chapter 27. It's a conversation that Jakob and I had about snow and grass that I remember vividly all these years later. Some things remain the same...
Apraxia. The disconnect between the brain and the body. The brain wants the body to do something and the body does not cooperate. Jakob experiences a good dose of apraxia of speech. Sometimes words come out the way he wants and sometimes they don't come out at all. And sometimes it just takes awhile. In this episode, I didn't edit anything. I left in all the silence. You can hear how the words come...sometimes fast and furious and sometimes I have to wait. The waiting is soooo important. You'll hear why. If I didn't wait for his answers, I wouldn't know what he's thinking. And boy oh boy do I want to know what he's thinking...
I share a speech I gave a few years ago to a big group of special needs parents and caregivers. It's the speech that made me want to do a Ted Talk. And I still love it today. I talk about BEING instead of DOING and how our loved ones with disabilities can change the world and make it a better place for all of us. And what we can do to help make that happen.
Jakob wanted to talk about our trip to New York to see his doctor and our hiking adventure in Watkins Glen. He had a lot to say in this episode, love how much he loves this and how hard he's working to say all the things he wants to say.
Decorations, presents, and church. Attempts to feel 'normal" and letting that go. And always putting the relationship first.
Changes in schedules and routines can be tough for everyone, but especially for someone on the spectrum. Jakob loves the predictability of his routines. After a lot of hard work over the years, he's become a superstar when it comes to mixing things up if it's absolutely necessary. And it's been necessary the last couple weeks as he helps Grandma get back up on her feet following knee replacement surgery.
The future is really terrifying for parents of special needs children. What happens when I die? Where will they live? Where will they work? What will they do with their days? Will they have friends and things to do? Will they be healthy? Will the world be kind to them? Well I have some ideas and dreams for Jakob...can I make it happen?
Every year we make a trip to Red Hook, New York to see Jakob's doctor. We do our best to make it fun...and hopefully what we have planned this year will be great! We hope...
Changing old habits is hard...especially for someone with autism. Jakob really came through for mom in a big way. He deserves some serious praise for this one...
Long before Jakob had words, he was letting us know when we were making wrong turns. I talk about how we managed those meltdowns and how we took his passion for directions and used that to teach him how to be more flexible.
With each week, Jakob opens up more and more, having more to say and having more fun. He was so excited to talk about Grandma coming to Ohio for the winter, all our crazy pets, and his Halloween costume. Hope you enjoy listening to it as much as we enjoyed recording it!
Be sure to listen when I ask him how many lessons he's done...impulse (like I spoke about in Episode 11) takes over but I pause and the answer comes. Pretty cool. There's so much power in the pause...
The most frequent question I get when someone finds out I have a child with autism is...is he verbal? The answer isn't simple...
Jakob surprises me with a last-minute topic change and that's a Big Deal. And he's always excited to talk about the animals that surround us and bring so much joy into our lives.
Setting Jakob up for minimum stress and maximum flexibility in challenging situations (all situations, actually) has continued to be a goal for many many many years. And this trip to my parents' house is the latest evidence that we've been on the right track.
Jakob loves road trips, especially the ones to Grandma's house. He's quite the seasoned traveler. Here's how he prepares and our adventures on the road.
Jakob made the choice to take out the trash and change his sheets and unload the dishwasher without any pressure from me. But I did inspire him to do it. I explain how. And smack dab in the middle, I get a facetime call from him. You'll get to hear how these calls usually go. As always, he's a hoot! And how these podcasts are helping him become a better communicator...it's so exciting!!
Jakob works hard at everything he does. And he does it all with so much enthusiasm. You can hear it in his voice as he talks about the things he does around the house to help me out. He was smiling non-stop while we recorded this and I think you'll feel it, especially when we talk about toilet paper...
Before I could do anything to help Jakob, I had to change the way I was thinking about things. His autism, his behaviors, and pretty much everything else in my life. And here is how I began doing that...
Jakob wants to talk about the playroom and what we did in there, so we do! I am so impressed with Jakob and this podcast. Communication is hard for him. What he wants to say isn't always what comes out. There are verbal impulses he struggles to control. So it takes so much focus and can be exhausting to get his mouth to do what his brain wants it to. He works so hard. And he's doing an amazing job.
Ending the marriage, asking questions and finding answers, and going against what the experts said to do.
What happened in utero through the beginning of treatment of Jakob's autism. And how Jenn went from terrified to curious to inspired.