Leta's Tap Styles

We Were Going to Talk About Her Thrive Program: Chatting with Michelle Choairy

• Leta and Amanda • Season 2

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The plan had been to talk to about her program, Thrive, for parents of kids with complex needs. But, when friend of the program, Michelle Choairy, joins the program, scripted questions go out the window. Join us instead as we kind of talk about Thrive, hit upon Michelle's Facebook support group for parents, Wisdom4Complex Kids, and just talk about having kids who aren't "typical."


Check out Wisdom4Complex Kids on Facebook

Check out the Thrive Facebook group for parents

Check out Michelle's website and book a free call 

Donate to Leta's nonprofit dance studio, Autistic Wings Dance Company, by visiting their website, https://www.autisticwingsdancecompany.org

Leta:

Hello, this is Leta and this is me and my mommy's podcast. And there's my mommy, and there's me, and I'm just talking about this stuff. And there's me tap dancing, because this is a tap dancing slash autism podcast. And there's a bunch of animals, and a wallby trying to eat my hair. And there's a bunch of sand and ocean. Also, there's all this old time stuff. I love all my mentally ill friends. All that going on, so old. Yeah, it's like life's coming to an end. Oh, and also, there's my boots. My boots are amazing. Also, there's me, trying not to have a panic attack. Also, this is a podcast about me. my autism, dancing, and blah, blah, blah. I'm just ADHD and this is it. Also, there's my cute, adorable puppies.

Amanda:

Um, hi, welcome to this week's friends Friday here at Leta's tap styles. We have Michelle back on the program. She was our very 1st interview back in October. I want to say, we are so excited. She's back on the program. Um, I'm going to try my hardest to introduce you because. But with my brain is going, you can tell I have ADHD this morning. Anyways, Michelle is an amazing person. We have had the amazing opportunity of getting to know each other over the last few months. She. Yeah, and the pittie just came down to make, uh, problems in the studio.

Michelle:

okay.

Amanda:

He just wants attention. You know how that goes. Anyways, Michelle is a friend of the podcast. She is, um, the founder of Wisdom for Complex Kids. And it is a More than just the Facebook group over on Facebook, but it is a place where parents can get answers to a lot of questions. I have for complex kids. Um, she is a wealth of wisdom. Like, if you have any questions about IEP, she's someone to go to, uh, her son has. I will get it wrong if I try to remember which 1 of the, um, she's so I'll have you explain what Drake has, but, um, he's 1 of what 1 out of 200 kids who has the,

Michelle:

Yes. So, well, first of all, thank you for having me back. I know that we talked about it on the first episode and I'm so glad that we stayed in touch and it's been amazing to see what you ladies are doing in your life. So, um, I'll talk about Drake. Yes. So I have a 10 year old son, soon to be 11, that is starting to get stinky armpits. And so it's been kind of funny with that , with the hormones growing 'cause he is, you know, getting to that age. Um, but he is one out of 200 kids in the world with a genetic disorder that's called TBR one. Yes. It's, it's a mouthful, but it's TBR one is the, the, the disorder. And when we found. That was about 3 years ago.

Amanda:

that is a very small amount of kids,

Michelle:

Yes, very small, very small. And, but we're going to make this big because now we are finally getting our foundation together and we're going to start fundraising so we can start doing some, you know, Research and all of that. So we're small by mighty. So we're going to be okay.

Amanda:

um, your program 5 that you do for parents. Can you tell us a little bit about it

Michelle:

Of course. Um, so I was one of those parents that when, so I knew from the beginning from when Drake was little, that something was going on. You have this thing called the mama gut. That you just feel it, you, you know, that there's something you don't know what it is, but then you, when you follow that feeling, then you usually find something at the end, right? Sometimes you don't and that's a great thing, but some, but most of the time you do. So I was 1 of those moms that when my son turned 18 months, I'm like, he, like, he's eating is, is. He's, he's not eating the way that he should be eating. He's, he's not talking at all. So I started, I'm like, I need help. And I was looking around and I went to, to the pediatrician and the pediatrician is like, it's going to be okay. Sometimes it just takes longer, you know, and that's what you get from everywhere. But I follow my mom and we finally got help through the state because he was under 3 and that's where we kind of started our journey. With our regional center here in California, but over the years I've had to become like an advocate for my child because if I wasn't gonna do it, nobody else was going to do it and If you just kind of take what people are telling you and you just go with that Um, I would have never had gone and had figured out that my son has this genetic disorder because all I could hear was, oh, it's going to be okay. It's going to be okay. So, when about last year, I was, I kept getting phone calls and phone calls from different moms and. And I was like, you know what, I need to kind of think about what it is that I did. How did I do this? How did I become Drake's advocate through these, you know, 10 years of his life? And I kind of wrote it out and I came up with the Thrive program. So the T is teamwork. There is no way that you are going to. Raise a neurodivergent child in any way, and without a team, but it has to be the right team. So, I, you know, it's helping finding, uh, like. A pediatrician who understands a developmental pediatrician, there's just a lot of things that you have to do to find that. That team. Then you have the H, which is the helping systems. So this is where the IEPs come in, the state funded programs, insurance companies. Oh my gosh, all the stuff that you need and how in the world are you supposed to become an insurance You know coder, um, because exactly because nobody else is going to do this for you. Nobody is so you need to fight for it. So we go through that and then we talk about relationships, how you have to nurture the relationships that you have. And when I talk about relationships, I'm talking about community. I'm talking about your family. How do you bring them into this life that you didn't expect that you were going to have, but that's what you were given, right? How do you change and teach them to be a part of this, of your life and your child's life? So that's the relationship. Uh, the I. And I'm just giving you a huge, like, just an overview and stop me if you have any questions. Um, the I is the integration and the integration to me is like bringing yourself, like taking care of yourself. If you are not well, your child will not be well. And I've seen this and it is so true. Whenever I am struggling, Drake struggles. Whenever I am good, he's good. So it's about you. The V is validation. And to me, like, this is the best one. It's because you get to celebrate the small wins with your child. You validate all their small wins because if you don't, You can't continue, like, this is what makes you keep going are those small wins because we don't get those. Most of us, we don't get that those huge wins when we have the neurodiverse. Kids. And so you got to take that and make that your, you know, the small wins, celebrate, celebrate. And then the E is expect the miracle to happen. So once you are doing all these things. Then the miracle will happen. You are going to feel good about what you're doing. You're big, you have big, you know, you're helping yourself become that advocate. And you know that you're doing that everything that you can do and you will see your child flourish to their potential. So that is thrive.

Amanda:

The, I want to circle back to the H because people have asked us why I priced our dance classes exactly where I priced them. They're like, that's not, uh, high enough. And I'm like, yeah, I happen to know 5 insurance companies that will pay for dance classes, not dance therapy at 45 for a half hour, but dance classes at 45 for a half hour. Not that I'm like insurance companies, but I'm all about taking their money.

Michelle:

Yes, I didn't know that they paid for it. Amanda. I love that.

Amanda:

pay. Because you and I were talking on your podcast, there are evolutionary biologists who've been studying dance and because it's on that side and it's the hard science,

Michelle:

Mm hmm. You know We, here in California, in the state of California, if you, if your child is in the regional center, which is the state funded program, so they, they take care of the kids under three, then they send them to the school district, but if you still need that extra, um, if your child qualifies for that, then you stay in the system, right? It's still the regional center. And basically for us, it just means that For us, because we have insurance and we have all of these things, it means that Drake will be taken care of with the adult transition and, you know, if anything were to happen to me and my husband, so we really kind of went into this. But what I found is that they have so many programs and. Doing something, they do pay for, for example, Drake's horseback riding lessons, because it's a group, they pay for that, and it's not cheap, it's, it's 50 per session, like, per horseback riding lesson, so you should look into the state funded programs, because they might also pay for these things.

Amanda:

our state. Does not have as great of state funding programs, um, because we are blocked by a taper. So

Michelle:

Oh,

Amanda:

um, but even when they do for the dance programs, they do up in Denver, it cannot be traditional dance classes. It has to be adaptive dance classes, which throws the kids like Lita out because she's too good for the adaptive. Go ahead. Say your point.

Leta:

Also because I only do level 3 and apparently any level 2 and level 1 doesn't exist. Apparently those don't exist, apparently those apparently went extinct in those human beings minds. But

Amanda:

For everyone who doesn't understand autism is. Uh, three different levels. Our state only provides services for level three.

Michelle:

Uh, okay. So that is the same thing here in California, but you, and you have to be accepted into the system. And so, you know, of course, you You have to be in a, in a, you have to have like three different levels of need and, um, for them to accept you. But if you do have this, then they will pay for, for these things. And were lucky enough that Jen, that Drake's genetic disorder made him fall into that category.

Amanda:

Most of the insurance companies, once more, not a huge fan of them,

Michelle:

Who is,

Amanda:

yeah, no one is, uh, but my thing is I keep telling parents you're paying for it. You might as well get it to use. And, uh, I happen to know the magic words to get that money. Um, your doctor may not. But I do, um,

Michelle:

I need those letters and I need that stuff so I can give that to my people. Hmm.

Amanda:

it at the neurology level, instead of at the general prac level, it opens up the doors. Um, also developmental pediatrics versus, but so many parents stop at that general prac level or with autism, they never went to the doctor to get diagnosed. So the insurance considers it self diagnosed if it's through the school system.

Michelle:

That I do know. You got to have a diagnosis. And I feel like a lot of parents want to get away from the diagnosis because they don't, they're scared of the diagnosis. Yes,

Amanda:

It's like, But they deserve these services, um, and level one and level two and level three, depending on your health insurance united, um, they will not accept the general practitioner. As a diagnosis, they consider that self diagnosis as well. Part

Michelle:

interesting. Yeah. It's got to love insurance companies. I just got to love them.

Amanda:

of me kind of gets it, because are you accepting your General Pratt giving you your oncology diagnosis?

Michelle:

I know right. I so one of the things that I that I talked to the moms about to the parents about is for your team. You cannot just have a pediatrician, like a pediatrician has no, no. First of all, they don't know. They, they do know, but they don't know. So, um, we, some of the moms that I'm running into, um, that I've been talking to, they're kind of isolated in very small areas, like in rural areas, and so they have this a little bit in a harder way than, you know, if you're in a, The city and, uh, in an urban area where you do have the ability to go see a developmental pediatrician, or you do have the ability to go see a neurologist, you know, so, um, but what I've been. Really, like, just telling the moms is that even if you have to drive a couple of hours, it will make a difference to have the developmental pediatrician, the specialists on your side. Over just having the pediatrician and I'm not saying bad things about pediatricians at all, because they do help us, but

Amanda:

your neurologist has had a few extra years, so the insurance is going to be sites. Neurologists think they're gods. If you know surgeons, neurologists are like 10 times worse than surgeons.

Michelle:

Oh, you know, I actually, I have, she is the sweetest, sweetest neurologist. She's super young and she's so open and I, like. She's,

Amanda:

But have you brought her to the IEP meeting? Just

Michelle:

I have not. I have not.

Amanda:

till you bring them to the IEP meetings. Cause you just sit there going, this is why we have them. Cause they will sit there and they will destroy those school administrators. And then they'll pick up a phone with the insurance company and go, I wasn't asking cause your general, your general prac, your pediatricians asking, can I please have this? What the neurologists say. They're like, I didn't ask. And the neurologists. Yeah, her developmental pede, we could not get her allergy tested because they would not approve it with her pediatrician. Her developmental pede called up and went, I wasn't asking you're getting her her allergy test in the next week.

Michelle:

Love it. And, and that is exactly right. Like you do need those specialists. So when you're talking about bringing people to the IEPs, that's one of the things that we talk about a lot too. So for me, since speech was such a big part of Drake's. Uh, disorder that was actually his very first diagnosis with childhood apraxia of speech. And since that was such a, a big thing, every single IEP meeting I have my, my, his private, our private provider attend. And, uh, right now his school has had the worst luck with speech therapists. They lost their full time person who was great the year before. And now it's like a complete disaster. And I am actually trying to find a speech therapist outside to help them because I. My child needs speech therapy and I need them to get this going anyway, but yes, bringing your outside private providers into IEPs is the best thing that you can do because they will know how to speak to them in their language.

Amanda:

And even if they don't, like, your neurologist will or development of pediatrician won't know. They'll just be like, I'm God. You will bow down. I seriously, you are not allowed to say any more cursing words. She's getting a mouth here, Michelle, as we're doing all this, if you haven't.

Michelle:

I, I heard that, you know, it's, Lita, come on, we're recording.

Amanda:

I've learned how to bleep her out. Um, she's doing this with adults in real life. She's just like, I'm tired of you, but no, I was okay. Yup. So

Leta:

In my defense, first off, you cussed around me since I was alive. Secondly, if you didn't want me to, don't cuss words that use cuss words. And don't cuss around your child that is a few months old and her own freaking life. And thirdly, don't let her around your friends that cuss like this, they'll have a lover tomorrow. And there's my group!

Amanda:

because I have the PhD, the neurologist and developmental pediatricians are a little bit more doctor to doctor and, uh, behind closed doors, they are, they use cursive words.

Michelle:

Yeah. Yeah. Oh, you know, I, I've had to watch myself at home because. So one of the things about, I can't remember what it was when Drake started actually talking, he, he started saying, and he said it funny because, you know, because of his language disorder and I'm like, Uh, you know, something with an F ending in an ING. And I'm like, is he saying that? He was saying it? And I, and you couldn't really tell because of his speech disorder. Like kind of, it kind of blended in and I was like, John. We need to stop cursing in the house. He is picking it up. So, you know, we, um, we've had to watch ourselves a little

Amanda:

She's also been. Around what I've done a lot of meetings and, uh, because, you know, she was nonverbal for so long. We didn't realize when she got that receptive, uh, before she got the expressive and, you know, there's a reason you bring an advocate. So the parent can be the good guy and the advocate can be. The jerk, the school system hates,

Michelle:

yep, exactly. That's right. That's right.

Amanda:

on the, you have to know your coding because I had to, she had a couple of therapy groups that I liked and I'm like, hi, you're not getting paid enough because try prime pays different than try standard and you're billing her try standard

Michelle:

Yes, we've run into a lot of that, especially on the HMOs that, um, and, I mean, using the different types of codes also, that will help. And sometimes, um, the, using two different kinds of codes, because you are, you know, you're doing, you're talking, you're, Dealing with sensory processing disorder as you are doing speech and language pathology, and so these, you know, these are two or three codes that you can use, and then they will pay differently and some of the, I mean, insurance companies, you have to become a coder like you really do.

Amanda:

and that's the thing with. This, uh, prime try prime, which is the main military insurance. As long as you don't want to pick your own doctor. Um, they pay for everything, which is amazing, but the therapy groups are so used to all the coding and try primes coding is like, what are you seeing them for? And this. One of her therapy groups had like 17 codes and it kept getting kicked back and I'm like, it's one code autism and they're like, wait,

Michelle:

you don't need more than that.

Amanda:

that's all they want to know. What are you seeing her for autism? But she has all these speech issues. Yeah. So on tri standard, which works like an insurance company and parents pay a copay and please get off tri standard. If you have an autistic child, um, you don't need to be paying a 30, 40 percent copay.

Michelle:

Yeah, yeah,

Amanda:

Um, you have to do all those

Michelle:

of that. Oh, and, and I mean, for us, it was trying to get approvals for extra speech therapy because they only gave you 20 a year and you look at them and you go, my kid doesn't talk. That is one month.

Amanda:

The amount of times, yeah, the amount of times I have argued with parents going, let me go work you through tri prime and they're because tri standards like that, it's limited tri prime. If you have that autism diagnosis, they open up the purse strings. Like we could not get them to accept doing PT on her hip and her orthoped went. Her hip is caused by her autism period, send it in. And they're like, okay, how many years of, Physical therapy do you want?

Michelle:

That's amazing.

Amanda:

Okay, well,

Michelle:

it's getting around the system. It really is. It

Amanda:

It is knowing the system and you have to know it better than anyone else.

Michelle:

Yeah. So one of the things that I found just lately, you mentioned one certain insurance company and they, um, I found out last year that you can actually have your own person that you go to. And so you, if you're not utilizing that on your insurance. Go find out who that person is today, because they, they will, they know who to contact to get the

Amanda:

Yep.

Michelle:

We went through trying to get approvals for Drake's Water Physical Therapy, and there's no one in the area that provides it. It's just this one woman. And we just kept getting denied, denied, denied, denied, denied, and it was over and over and over and over again. And then I finally found this person and I'm like, listen, you can call every single physical therapy place in this area and they're going to tell you that they do not provide pediatric water, warm water therapy. And she is the only one, so you have to pay for her. And she figured it out. So go find that one person in your insurance company. Become best friends with them. Send them flowers. Send them a bottle of water. Whatever it is you gotta do.

Amanda:

She's like in the background saying, yeah, we're not putting that on the podcast. Um. And each,

Michelle:

said.

Amanda:

she was like, they drink too much already because they're dealing with us. Um, you can also ask for a case manager too, that can become that specific person. Um, I know tribe crime is always secondary. So I'm dealing with a lot of these insurances as a primary. And I'm like, did you perchance go talk to the case manager? Cause I am not going to name the hospitals across the country. I have a hate, hate relationship with, but The administrators can be just as much of a problem for you as the insurance companies, because they're lazy

Michelle:

yes.

Amanda:

and they also are scared of the neurologist. I don't know why everyone's scared of neurology, but they all are.

Michelle:

You know, it's funny, I have never brought On a physician to an IEP, but I love the idea because that is probably, like, there's nobody else, like, I am a doctor, you shut up and you get this done. Like, I am a, I, I can, I am prescribing this for this child and you got to listen to me. I love that.

Amanda:

I muted myself. My absolute favorite. Is when I do the autism ones, not lead us, we did one for lead up because her developmental pediatrician and I knew the school system didn't have it. I needed them to say they didn't have it. So my insurance would cover it and we were sitting there whole time going, just say, you're not going to help her with speech there. Because the moment you say she doesn't qualify for speech is the moment she qualifies for a private speech,

Michelle:

yeah,

Amanda:

but. Um, he had the whole time the school systems like, well, how are you a neurologist qualified to diagnose autism?

Michelle:

no, they did not ask that.

Amanda:

You'd be shocked at how

Michelle:

No, they did

Leta:

a table for any doctor. Wacky, wacky. Docky, docky.

Amanda:

they think of autism as just. Uh, learning disability, not as the full, and no, the number of times he wasn't the first one, the number of times I'll bring a neurologist and I'm like, I'm just sitting back here and the parents are like, should we speak? I'm like, no, no, let, let them go off on.

Michelle:

Let them do, let them teach them what they're talking about.

Amanda:

we were in Florida. The school system we were in would not provide lead a speech therapy until she could talk. They're like, we do not provide speech therapy until the child could talk. And her neurologist is like, and how the 11 do you think she's going to learn to talk? And I'm like, between that and her, um. She wasn't in the school system, but her Montessori preschool utilized the school system for stuff and her Montessori teacher was going off because girls have different things that get them labeled as aggressive and Lita, go ahead. You can go off on this one.

Leta:

Too. Devil was a boy. Yeah, that little boy, everyone that helped that boy got, knows problems fixed.

Amanda:

Translation, there was a boy in her class that was throwing stuff, but that wasn't aggressive because that's what boys do. But Lita was having meltdowns trying to understand she had to go to the restroom before she went out to the playground. And her preschool, Montessori preschool teacher was like, I need help. I don't know how to get through to her. The school system's like, well, that's okay. That's called aggression. She's very aggressive and we are labeling her as aggressive

Michelle:

But throwing things in the classroom is not aggressive

Amanda:

because he was a boy and boys, that's just how a boy with,

Michelle:

Yeah,

Amanda:

and yeah, you,

Leta:

He, he threw very, very hard, hard, hard, heavy things like rock and hammer

Michelle:

Wow.

Leta:

I dunno how he threw that brick.

Amanda:

but that, you know, and that's where you need your team to come in and with the medical degrees, laugh hysterically because her preschool teacher was getting nowhere going, no, this isn't aggressive. She just doesn't know how to explain to me.

Michelle:

Yeah.

Amanda:

And her neurologist was like, Do you understand what aggressive is? Cause I can show you and I'm like,

Michelle:

I guess. Yes. Yes.

Amanda:

Um, but you have a hard stop. I know here in a few minutes, we absolutely are going to have to have you on and get Michelle. You and I could talk for hours.

Michelle:

We could, we could, we've been talking for an hour and a half now. I just want everybody to know that and we could keep going, but you know, I, I just, I said this on, on the other end and what you and Lita are doing is so amazing and if, you know, if there's anything that I could help or wisdom for complex kids can help, we're, we're here for you.

Amanda:

we will have to figure out a way. Um, we have been talking for an hour and a half cause we recorded a podcast for Michelle's. Uh, I will, as soon as that one's live, I will put a link to that in the description below cause you are. Absolutely a fountain of wisdom that our listeners will gain so much knowledge from

Michelle:

Oh, thank you for having me, Amanda and Leta. It's been fun, and we, you know, we'll do it again. I mean, we totally will. Just tell me when you want to talk, and we'll chat, and we'll record. And I would love to do that.

Amanda:

um, real quick before I let you go, can you tell our listeners where to find you on the uh, web?

Michelle:

Yes. So, you can go to wisdom4complexkids. com. Just Wisdom for Complex Kids, or you can find me under my name, Michelle Schwiety, which is a little harder to find, but, um, but we're here, and you can find us on the, and I'll, I'll give you all the, the links to Amanda, so we can put

Amanda:

It'll be in the description

Michelle:

Yes, so for sure.

Amanda:

Thanks again for coming on, Lita. Can you say bye real quick? She's like, I am having one of those weeks and we will definitely have you on again, Michelle.

Michelle:

Okay. Sounds good. Thanks everyone. Bye.

Leta:

Hey well, thank you for watching the podcast and please subscribe and also look at that adorable pittie. Don't you want to subscribe for it and also please leave a like and don't forget if you subscribe to our stuff you won't miss any of our new podcast stuffies and also you can see that adorable pittie. Don't you like it?

People on this episode

Contributor

Amanda Trisdale

Host
Head Shot

Leta Rundell

Host