A different shaped heart conversations about disability awareness
Welcome to A different shaped heart conversations about being awesome with a disability and raising awareness at the same time and absolutely Yes sometimes you have to say F…..CK you to your own mindset and especially your disability!
A different shaped heart conversations about disability awareness
Rare Genetic Disorders: A Mother's Journey through TBR1
Michelle Choairy Wednesday, September 3, 2025
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On A Winning Heart today (Wednesday, September 3, 2025), Best-Selling Author, Win C welcomes Michelle Choairy. Michelle is a passionate advocate, speaker, and mentor dedicated to empowering parents of neurodivergent and complex kids. She is the founder of Wisdom 4 Complex Kids and creator of the THRIVE Framework, helping families navigate IEPs, medical systems, and advocacy with confidence. A proud mom to a child with a rare genetic disorder, Michelle brings both lived experience and professional insight to her work. She is the host of the Complex Kids, Simple Solutions podcast and co-host of The Mom Panel Podcast, where she shares tools, stories, and hope to help families thrive one step at a time. To learn more about Michelle visit https://michellechoairy.com/
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Welcome to a winning hunt, you guys. Today I'm honored to have Michelle with me, and I'm gonna let Michelle take it away and share a story, and then we're going to see how this interview naturally rolls, and then we'll just have fun with it. So welcome, michelle.
Speaker 2:I love it. Thank you, wyn. Yeah, thank you for having me. I'm excited to see how this goes, but my name is Michelle Shoaiti and I am a mom of what I like to call a complex kid. My son is 11 years old and about three years ago we found out that he has a rare, very rare genetic disorder called TBR1. And he is one out of about 200 in the world right now, but he's the only one with the variant that he has, and so he's when you say one in the world, that's my son. Yeah, yes, and so you know. Throughout the years, we've had so many things happen. We started out, you know, with one diagnosis, and then it's developed into like 10, you know different diagnosis, and then it's developed into like 10, you know different diagnosis. And then, about three years ago, was when we did the genetic testing and we came back and we figured out what it was causing all of the 10 different diagnosis that we had.
Speaker 1:Now, are you or your husband a genetic carrier for this disease?
Speaker 2:We are not. So it's a de novo, is what they call, and so we don't carry it. My daughter doesn't have it. We don't know about the grandparents. We haven't really tested them. My parents are deceased so we wouldn't be able to test them. But we don't know. Usually they just call it a de novo, because it came and it was just when he was formed. And it's interesting because Drake just had one little letter that inverted and so it.
Speaker 2:Some people have a whole deletion of the gene, some people have partial deletions and his was just one little inverted letter and it has caused all of these complexities in his life. But you know he, we love him. He has. He has his complexities but he has his amazing abilities and he has his moments, like we all do correct.
Speaker 1:Yes, especially cerebral palsy.
Speaker 2:Yes, trust me, you guys, I have at my moment oh my gosh, when I can only imagine them yeah yeah, but you guys love kids just the way they are yes, yes, and I tell everybody you know, in, in the things that he lacks right, he makes up in other ways, like he is the most sensitive kiddo you'll ever like. If you are crying, he will cry with you. He can feel that like people's responses so, so deeply and like that is like his best, best, best quality that we have, you know, and he's just when he wants be sweet, when he's not having his days and his moments. He is just amazing and we love him so much.
Speaker 1:Now, what would be your advice for the new mom or the new brother or the new sister with a medically complex kid, or the new sister with a medically complex kid.
Speaker 2:So, you know, the first thing is for me is that it is hard, it's hard right, having these complexities, having these, you know, disabilities and whatever you want to call them. I like to call them complexities because I don't look at it as a disability a lot of times, and so it's like to me it's. You know, we have complex things that happen in our lives and and that's how it is. But when you have these complexities in your life and you have these, you know, quote unquote issues you have to have a positive attitude about it.
Speaker 2:And so I, about two years ago, I started a business and it's called Wisdom for Complex Kids, and we do, I actually help parents that are going through this, and so we, you know I developed this, this whole process on how to do this, how to get through this and become your child's advocate. But I think that the biggest thing that I have to say to the parents that are going through this is that you have to celebrate the small wins, and this is valid for everybody, because if you don't celebrate those small wins, it's so easy to look at the bad and what they're doing wrong and what's lacking, what they're not doing, what they're doing and you forget to look at those small little things and I was gonna say, to give you guys like example of the small little wins, having a kid put a dish in the sink, that's a small little win, like they're still repeating it a million times when they finally get it.
Speaker 1:So you're right, you have to celebrate the small little wind to counteract. Oh my God, what am I going to do?
Speaker 2:Yes, I mean, it is already hard, right, it's hard on parents, it's hard on the brothers and sisters, it's hard on the extended family uncles, aunts, grandparents, you know.
Speaker 1:It's hard on everybody.
Speaker 2:But you have to look at the good things, you have to look at the wins, because if not, you will drown in the bad, you will drown in the.
Speaker 1:And that's not okay, no, that's not okay to drown in the bad. And what drives me nuts is when people say, oh, I have a disability so I can't do anything. I'm like no, I have a disability so I can't do anything. Like, no, you can. You may need help doing it, but you can do it.
Speaker 2:That's right, that's right, and I think that for the parents to, especially when you have a little child, right? This is what I think, a lot, because this is where I am right. I'm the parent, I'm not the person, I'm not my son, but for the parent, if the parent, if the mom, if the dad, if you're not well, your child especially the little ones they're not going to be well either, and so you have to master the small wins and not allow yourself to dig that hole, because if you're depressed, can you imagine who's going to take care of your child, who's going to help them?
Speaker 1:Right now.
Speaker 2:So you have to, you have to figure it out, you have to be positive and you have to count the small wins.
Speaker 1:Yeah. So I have a question for you if money were no objects, what would you be doing?
Speaker 2:um, I don't know that I would do much different than what I'm doing.
Speaker 2:Maybe I would probably maybe look into like a different school, but I have been looking and I haven't really found a school that really, um would change much of the outcome with him. But I think that in and it's not just about him I think that if I had enough money I would probably I'm thinking big here when I'm thinking big here, and you know but I think that I would help the TPR one foundation to start looking for some kind of treatment, cause I think that there are a lot of genetic treatments that they're putting out there and they're coming out with, and I think that's you know, the way things are in the world today. Hopefully soon there is something that's going to be coming up, and I don't even know if it would make a difference for my son to have this, but since they're catching these genetic disorders so much earlier in life, maybe it would make a difference, right for the younger kids. So I'm thinking big and that's what I can think big of on.
Speaker 1:So on a typical day. What does it look like for your son?
Speaker 2:So he is very like, high functioning, so, but he does have a speech disorder, so people don't quite understand him 100%. I even sometimes I have to have him repeat himself a couple of times, yeah. But so he wakes up in the morning and I have to tell you this this is a really cute story and it just happened yesterday. And so today, yesterday, I I'm sleeping and then I wake up and he's right next to me and he goes mama, I got myself a donut. And I was like what, how did you do that? He jumped on his scooter and, rate, like, went down to the donut store which we have never done on a scooter before or on his bike, and he just jumped on his scooter, took the dollar that he had in his room, went down to the donut store, came back with the donut and he was so proud that he did it by himself, right.
Speaker 2:So this just started yesterday and he did it again today and he actually took his sister with him. But you know, this just started happening today. But then you know, after that, like, we usually get him ready to go to school, and he does go to what we call here in California a non-public school, so they are out of district. Placement is basically where he is and it's a 45-minute drive.
Speaker 1:And he does not like that.
Speaker 2:Yeah, he does not like that, so he goes. He goes on his ride for 45 minutes. He goes to school until about three o'clock. After that we have different activities for him. Usually he has speech twice a week. He has swimming, which is physical therapy, because it's a physical therapist who does the swimming and he does special needs soccer league with his friends.
Speaker 1:I love it.
Speaker 2:We try to keep him busy and try to keep him from getting into trouble.
Speaker 1:I guess is more of my opinion, yeah yeah, translation. You need to keep all kids, especially the ones with disabilities, busy so we don't get into trouble. That's right, we don't get into trouble. I could easily get into trouble myself, yeah, yeah. So what is your biggest dream? I mean what when you think big? What is your biggest dream for your future and the future of your son?
Speaker 2:Well, of course, for me, it's for him to have an independent life.
Speaker 1:Right.
Speaker 2:And because it's such a rare disorder, such a rare genetic disorder. You know, there's only a few of them that are a little bit older. I think there's a 24 year old, but she is you know. And then there's like a couple of them they're a little bit older, but it's hard to say because the variants are different, the it's. It's really truly I hate this word, I absolutely hate this word but it's kind of. It's a spectrum.
Speaker 2:You have to look at the spectrum and we don't know. We don't know how he's gonna end up. We don't know. And you know, it's scary to think that you know the he has a 50 chance that if he does have a child in the future, that the child will have the same disorder, and so those are all things that a mother of an 11 year old should not be thinking about, but that we do think about. Yeah, right, but of course, like, I think that the biggest dream is for him to be happy, for him to have an independent life, and really it's happiness. That's what I want him to be. I want him to be happy.
Speaker 1:Yeah, we all want humans to be happy. We can't be moping around just because of our disability. No, and as we wrap this interview up, I know you have questions for me.
Speaker 2:Yes. So I would love to know how you started all of this, what you're doing right now, because, honestly, this is already hard as it is for me who I'm just barely starting with my business. You know, advocating and doing the things that I'm doing, but look at you like how did you start this? What? How did it come up?
Speaker 1:I started it because, unfortunately, I lost my mom in 2010, and I had to do something because she was my best advocate. So I had to do something in honor of her and this is how I started this then project. I was going to do this as a side project and keep my other company going selling artwork, but this turned into my job, and writing books turned into my job, and this is stuck. Books turned into my job and this is stuck. I mean, I wanted to do this for the parents who have newly diagnosed kids and they're stuck in the hospital. I mean, my mom didn't have anything.
Speaker 1:I was born in 87, so no Google, no podcast, no, nothing, barely a support group, and so no Zoom to do this either. So she was finding out everything on her own and at points they said to her but when in a home she'll never function, my mom goes no, we'll take her home, We'll love her the way she is, We'll have her function to the best of her abilities. So this is why I started all this. I started all this because I needed to do something for the parents that have nothing at the beginning of their journey.
Speaker 2:It's so, it's so true, right, when, like we, for me, like I'm lucky that I do have internet, that I have you know where to go, look for this. Like that we have Google Meet or Zoom or whatever it is that you can talk to people all across the world. And you know, for the parents who did this earlier in life, like earlier in in in the years, I can only see that my. So, just really quick, I have a brother who I he's in the spectrum. He, he has autism and he was never diagnosed because nobody really knew what it was and so he was just the little, not the good kid at school, you know, for the longest time and my mom really didn't know, like where to go and search for it. So, honestly, I commend you for doing what you're doing Because, really, this, this, I think that you're helping a lot of people and I appreciate what you're doing. I really do.
Speaker 1:Well, thank you, because I try to help as many people as I can. I mean, I gave and I'm here in Arizona, by the way. I am here in Phoenix, arizona, and I gave a speech in June to my church and one of the women came up to me who saw me speak and she goes what transport service do you use? Because I'm having problems with my transport service, so with my daughter's transport service. And I told her and we texted and I gave her the number. Now she's happy as a clam because she didn't have to look under a rock to find new transport service. She reached out to me because I have done all this research. Sometimes you have to look under rocks and ask for help and people will say to me people will at me for that one. People will say to me well, you have a disability, it's okay for you to ask for help. No, I have a disability but I ask for help. But it's okay for anyone to ask for help.
Speaker 2:That's what makes the world go around, I think I think everybody, and when you have good people, people who are truly trying to help, it really brings it together and we can have a better world. And you can help your friends at church with what I'm doing right now, that I can help people to by advocating, by becoming the best advocate that I can be for the children that I'm helping, and so this all come kind of goes around, right, and I think that, um, you know what? What goes around, comes around, and I think that goes around, comes around, and I think that you know the the better we are, the better people that we are, the better people we're going to attract into our lives and we're going to be happier for that exactly, exactly, and I know you had a question for me about my IEP yes, do you want to talk about IEP?
Speaker 2:Yeah, I love it. So how so you did you go into the school district in, like, I'm assuming, when you were three, correct?
Speaker 1:I was very fortunate. I went into a private school until eighth grade and then I went to my local public school.
Speaker 2:Okay, and did you stay in the public school until you did you graduate from school? I graduated.
Speaker 1:I graduated from school, I had IEP. For those of you that don't know what IEP is, it's an individualized education plan for kids and adults. Now for kids with disabilities and adults who are going back to college. Thank you very much. So the college level has something similar to IEP.
Speaker 2:Yeah, it's a little harder in college, though, and I mean it's great that you're doing it, but you know an IEP it's. It is such a like there are so many different levels. Good IEP is bad, IEP is who? So your mom was with you until how old were you?
Speaker 1:and how I. When she died, I was 23 and then, unfortunately, I lost my dad In 2019, so, but my mom was my biggest advocate.
Speaker 2:Yeah, yeah, you know how. How are IEPs designed for kids with CP, like with you? Know it's so hard. Because did you? I know that things kind of get worse right as you get older with your diagnosis, correct.
Speaker 1:Mine doesn't get worse. Cerebral palsy is not a progressive disease. Mine is getting. I am in this situation right now where I am trying to get it better actually, but I mine, cp is not a progressive disease in the brain.
Speaker 1:Okay, okay so, but how I set up is let's say, you need extended test time, they will put in when needs extended test time or when needs stuff regular. I am an auditory learner so I know the answer. I can retain stuff like this note tomorrow, but I just have. My comprehension of the book is hard because I have trouble holding the books.
Speaker 2:So do you? Did you listen? Did you have a? And I know that this was a while ago because you were. You know you were born in the 80 little bit different.
Speaker 1:I learned how to speak out of the state of Colorado. I actually learned how to speak with one of the top speech pathologists in the country and we were about to look into assistive device. But assistive devices back then weren't iPads, they weren't cell phones, they weren't smartphones, because they were huge they were about the size of a table.
Speaker 2:Yes, I remember those the size of a table. Yes, I remember those days when I remember them. Yes.
Speaker 1:Yeah, yeah, they certainly weren't apps on the iPad, my God.
Speaker 2:Yeah, you know it's crazy because, like how far we've come right with technology. Yeah come right with technology and I. So we keep looking into different types, different ways that my son can learn, and right now it's like it's a touch screen computer. It's you know, it's they. The computer reads to you, you can dictate it and it will type it out for you it's I, you know. It's amazing how you did this when this didn't exist.
Speaker 1:Yeah yeah, and this is why I'm doing what I do now, because I will teach people about technology and I will teach people about podcasting too.
Speaker 2:I love it. I love it that you have your own podcast and you reach a lot of people too, so I really what you're doing is so good for everybody, and that's why I was so excited to come on and talk to you.
Speaker 1:Well, I appreciate that. And where can people find you if they want more information?
Speaker 2:so they can find me. I'm on all social media. Uh, it's michelle show. It is c-h-o-a-i-r-y. I know it's a hard one, michelle show, itcom. And or they can look for wisdom number four, complex kidscom. So it's wisdom number four, complex kidscom.
Speaker 1:And.
Speaker 2:I do. I, I'm an advocate and I also help I. I've been in the health health care business for many, many years, and so I started helping some of the families that I advocate for with some insurance stuff, because, as you know, insurances don't cover anything.
Speaker 1:No, they barely cover hospital, let alone assistive device. And I'm not kidding when I say that.
Speaker 2:Yes. So anyway, I started helping them. So if you have anybody, any children, that you have an IEP that you need help with, I'm doing for your listeners. I will give them a free IEP review so we can look through it and kind of give them an idea of what it is that they need to be doing and kind of, yeah and if you um, here's my suggestion if you get confused with the IEPs, always bring a advocate with you who can listen for you, because you get.
Speaker 2:They always say bring someone to the doctors, but I would say bring someone extra to your IEP so you don't get confused yes, and just so you know, so everybody knows and this is something that I didn't know when I first started this you can bring anybody that you want to bring to an IEP. If you just need a friend to come with you to give you the strength and so you're not scared, you can do that. And so just don't let them push you around. And there's a reason. Advocates are out there and there is a need, and, um, I promise you that if you have an advocate or somebody with you, that your child's iep will be so much better and they will get so much better, uh, services than you would without somebody.
Speaker 1:I have a story based upon an advocate. I got pneumonia, as you guys all know. I got rushed from the to the hospital with pneumonia and that was a story in itself because right now I'm temporarily bed bound. But my point is I told the case manager at the hospital to call my medical liaison. She comes in before calling my medical liaison, wants to change my plan completely. And then I said call my medical liaison, wants to change my plan completely. And then, um, I said call my medical liaison and she goes well, I can't find the number. I said the number's on the board right behind you. She walked in with a totally different attitude after talking to my medical liaison and I'm like I told you people that. So my point is always always have a pay, always have an advocate if you can swing one, because the less you you can a team, you and the advocate can do a team. But it's more reassuring if you have the advocate here with you, just because the advocate may catch something you didn't.
Speaker 2:For sure, yes, no doubt.
Speaker 1:And we'll have all Michelle's information in the show notes. And it was lovely talking to you and I hope you guys enjoyed another fabulous episode of the Winning Heart and we'll catch you guys enjoyed another fabulous episode of the Winning Heart and we'll catch you guys next time. Bye you guys, bye everyone.
