March 12, 2026 • 35 mins
Some children don’t follow the typical developmental path—and when that happens, many moms suddenly find themselves navigating a maze of evaluations, acronyms, therapies, and school meetings.
In this episode of the Mothers of Boys Survival Guide Podcast, I talk with special education advocate Michelle Choairy, a mom who knows this journey firsthand. Michelle shares her story of raising her son, who was born prematurely and later diagnosed with a rare genetic condition, and how that experience led her to help other families navigate special education and support systems.
We talk about trusting your “mom gut,” recognizing early signs that something may be different, understanding IEPs and 504 plans, and why building the right team around your child can make all the difference. Michelle also shares her THRIVE framework, which helps parents advocate for their children while remembering to take care of themselves along the way.
If you’re raising a child with developmental delays, learning differences, or complex needs, this conversation is full of encouragement and practical insight.
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(00:00):
Parenting Boys with Special Needs, Advocacy, Hope, and the THRIVE Framework
This is Suzy Shaw, mom of now two adult boys and author of the book and podcast,
Mother of Boys Survival Guide.
Some children don't follow the expected developmental timeline. There may be
(00:21):
physical delays, language may take longer than in other kids, some struggle in ways
that don't fit neatly into a diagnosis, or they receive a diagnosis that's so rare that there's
no clear path forward. And when that happens, moms often feel like they've been dropped into
(00:43):
a system with no roadmap. Appointments, evaluations, acronyms, waiting lists.
Today, we're talking about raising what my guest calls “complex kids,” not broken kids,
not less than kids, but complex kids. And then the mothers who are learning how to advocate,
(01:06):
support, and help them thrive. Michelle Choairy is a working mom of two kids, a special education
concierge, founder of Wisdom for Complex Kids, and the THRIVE Program. She also is the host of
two podcasts:, Complex Kids, Simple Solutions, and The Mom Panel, where she blends expert
(01:33):
guidance with heartfelt conversations to support parents raising neurodivergent and complex kids.
Welcome, Michelle.
Oh, thank you, Suzy, for having me. And that was a wonderful introduction. Thank you.
Well, you have definitely a busy life going
on with two kids and working and podcasts. And so, bravo to you.
(02:00):
Oh, thank you. Sometimes I don't know what's right and what's left, so ...
Don't we all. Yes. So, I appreciate you being on the show. And I understand there's a wide range
of challenges that parents and individuals might need to face. So, can you please share
(02:22):
your story and when you became aware of your son, and just tell us a little bit about your family?
Sure. So I was an older mom. I was what's called a geriatric pregnancy. And so I was 38 when I
got pregnant with my son. And we had a lot of ultrasounds, we had all of those things. And
(02:47):
when I was at 29 weeks, all of a sudden, I go for an ultrasound and they say, you got to go to the
hospital right now. He has no amniotic fluid, he's not moving. And I was like, oh my gosh.
So three weeks on bed rest, and then he was born two months premature. So he was eight weeks early.
(03:09):
The hospital where he was born, they followed the kiddos that were in the NICU
for a period of time. And every time we went in, there was something that they would look at,
oh, he's delayed in this, oh, he's delayed in that. And for a while,
if you have a NICU baby, you have to take into consideration that they were eight weeks early.
(03:36):
But he was still lagging. When he got to about 18 months, he wasn't eating correctly. Like I
could tell that something was going on. And so I went and I searched and I searched for somebody
who could help me. And it was an occupational therapist that said, there's something here,
(03:57):
I see it. Because everybody at the time would just say, “oh, he's going to be fine.
There's nothing there.” But mama gut usually tells you that there's something going on,
and then that's when you, I was the crazy mom going around trying to figure all this out.
Okay. Not crazy, because I think that mama gut is so important,
(04:18):
and moms discount it, and we shouldn't. Right?
Yes. But that's the thing, right? They look at you and they go, what is this woman doing?
And really, truly, we're advocating. We know that there's something that mama gut,
tell everybody, you have to follow that. Just follow it.
(04:38):
Because two things are going to happen. It's either going to say, oh no, it's nothing,
and give you the peace of mind that it's nothing, or it's going to give you an answer. Okay,
there's something here, and what do we do from now? So it's a 50-50 chance,
and at least you'll know. You'll have an answer one way or the other.
(05:00):
And through the years that mama gut just couldn't place it, I was like,
you know, he has a speech disorder, but he has some other things. He has
developmental delays. He has all these things. He didn't really fit the autism,
and so everybody that I would go to, they would say, I just don't see it, because he's so social,
(05:25):
and it wasn't until he was eight years old that we finally got a genetic testing done, and it
comes back with what's called TBR1. And when I look it up, there is 1 research about it that
was done many years ago, but with rats, and then I find a Facebook group, and we were number 42.
(05:54):
And everybody in the group had the same genetic testing disorder, right?
Correct. So the interesting thing is that they started testing for TBR1
earlier in Europe. So there were a lot of kiddos in Europe that had been diagnosed with TBR1,
(06:14):
and the ones in the United States, they came around the same time that we started,
and we're at about 230 now from the time that we started. We really think
that genetic testing is coming a lot earlier and sooner, so we're seeing
more of the kiddos come in, but it wasn't until he was eight that we figured this out.
(06:40):
It's so hard to listen, to hear that there's something, and as a mom, you're like, okay,
that was the answer. I didn't eat too much Taco Bell and didn't drink too
much Dr. Pepper, and that was not the reason why my kiddo was so far behind,
right? Because it's in the DNA. It was when the egg was fertilized,
(07:03):
the DNA formed, and that's just how it was. It's been a big, long story there.
And how old is he now?
He's 11. He's 12 in April, so he's very excited to turn 12.
And probably a Tarus, so I have a Taurus,
(07:27):
too. And I was an older mom. I didn't have my second son until I was 37,
and my first son when I was 35, and I aged, I think, 150 years in that second pregnancy.
It's so true. It is so true. The madness that
(07:48):
comes with the second child, it's like they overtake you.
For moms who are just starting to feel as though something is off in their child,
what do you think the first signs are that maybe they shouldn't ignore?
So if you feel like there's something going on, follow through with that. I
(08:14):
think that the pediatrician, they're usually your first go-to, right? But I will tell you,
the pediatricians are usually not great at finding these things. They're very kind of like what I
was just saying, oh, it's going to get better with time. And they don't like to really give
a diagnosis until things are a little bit more of a problem. And so it's a hard thing to do.
(08:43):
But for us, what worked is that, okay, there's a speech, like he's delayed in speech. Okay,
then let's go find a speech therapist. Okay, he can't hold a spoon or a fork correctly. Okay,
we need to go to an OT (Occupational Theripist) who's going to teach more fine motor skills.
(09:06):
And when you feel those things are behind, that is when you need to go and you need to look for help.
Don't let people tell you that, oh, it's going to be okay. So-and-so didn't speak
until they were 10. That might be the case, but early intervention is the
(09:29):
best thing that you can do as a mother for your children. So if you have that moment,
if something is telling you, go find somebody who can help.
And I think that early intervention is so important today that, you know,
(09:51):
wasn't necessarily there in the past. And I will share that I was born with
a congenital hip dislocation, which wasn't identified until I was around one. I was in
a full body cast from one to two because that's what they did. And physical therapy hadn't really
(10:12):
been invented. So they took an x-ray when I came out of the cast and said, good to go, bye-bye,
see you later. So at, you know, two, three, after being atrophied for a year, I was learning how
to walk. And so I never really learned how to go upstairs. I don't go upstairs well. To this day,
(10:36):
I don't really run. And I've always thought that everybody has a disability. And that's
what I taught my kids, is that everybody has a disability. And some of us know what it is.
I love that. I absolutely love that.
(10:56):
So you know, the idea of complex kids, which is, you know, what you call them,
I mean, we're all sort of complex, but I love that too because, you know,
kids with some additional needs, some special needs are more complex. How
did you sort of come up with that name? And I imagine it's pretty well received.
(11:18):
When I started doing THRIVE, which is my framework that I teach the parents,
I was thinking, you know, I don't want to differentiate the disabilities. I don't want
to label them. Because when you label them, then you're going to be saying that what I'm
(11:40):
teaching right here is just for the kids who have autism, or it's just for the kids... And then
it just loses what it truly is supposed to mean, right?
So you shoehole them, right? And then they don't necessarily strive in addition to thriving,
(12:03):
right? Because they don't think they can, right?
Correct. Yeah. And so I was talking to a friend of mine who also has a complex kiddo,
and all of a sudden we're just like, wait a second, they're complex. That's all they are. And
it was true. They were just a little more complex than the usual kiddos, the neurotypical kiddos.
(12:27):
So I want to differentiate, because what happens is this. No matter what, if you have a child who
has the complex needs, or if you want to say special needs, if you want to use that word,
they have to do the same things. And so that's when THRIVE and complex kids kind
of came together. It was like, you know, it's a little complex. But just a little bit more,
(12:51):
I have to do more for him than I do for my daughter, who is neurotypical.
So, you know, the early intervention, critical. So is your son currently in public school?
He is. He just came back to public school, to the school district. We had him in what we call here,
(13:13):
it's a non-public school. We thought that it was going to be a better placement for him because
they're smaller classroom sizes. And so more one-to-one attention, but it turned out that
it didn't work. And so we're like, you know what, let's bring him back to the school district. And
to be honest, he's thriving there. And I kind of wish that I would have brought him back sooner.
(13:37):
But early intervention, I'm telling you,
there's nothing like it. If you get them where they like, as soon as that mama gut shows up,
go do it, go get some help because it makes a difference. My son is 11. I think that
had we not started so early, I don't think that he would be speaking today.
(14:03):
So in my book, I call my boys Ernest and Exuberance. And, Ernest is a little bit
neurodivergent. And I remember going to the school in, I don't know, first or second grade
(14:24):
and saying, I think he needs to be tested so that we have a better plan for him going through the
public school system. And I wrote a letter and I turned it in and I heard nothing. And so I
was telling my sister-in-law about this and she said, well, did you use the word, did you say
(14:46):
IEP? And I said, what's an IEP? I don't know. Why would I say that? You know, let me just throw
random letters onto a page. And so I rewrote the letter. I used the word IEP asking about testing.
And within 30 days, you know, instantly I get this answer back that I didn't the first time.
(15:08):
So can you help us understand a little bit about how the school system and the IEP and
the 504 and all those sort of, you know, plans when you're going to public school?
Sure. Now with my advocacy, like this is something that I, I really,
I love looking at this. And so what you just explained is actually a law that's called Child
(15:36):
Find. And so the parents or the teachers, anybody in the school district should be looking for the
kiddos who are in need of special education or any kind of, or related services. Okay.
So once, if you are a parent and you feel like something is off and you have the right
(16:04):
and you should send a letter or an email to the school district requesting assessments
due to these concerns, and then you list your concerns on the email, they have 15 days to
get back to you on this, and then they have to do assessments. It's, it's the law. Okay.
(16:29):
So let's talk about the difference. I think that there's a misconception and misunderstanding on
what a 504 and an IEP is. A 504 is for accommodation. So let's say, the kiddo
has ADHD. Okay. So some of the first, like the first things that they do a lot of times is they
(16:55):
put them on a 504. And the reason they put it on a 504 is because it's a lot less involved. So let's
just say some of the accommodations that you have that they would have would be longer testing time,
or they can be read the, the question, uh, they can sit closer to the teacher in the classroom.
(17:22):
So these are what we call accommodations. An IEP, on the other hand, it is very thorough.
And that's an Individual Education Plan?
Correct. Yes. Okay. So what that does is they are going to do full assessments on
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the kiddo and they're going to find where is the disability? Does he have a speech and
language impairment? Does he have something like the ADHD, which would be under other
health impairment? Does he have intellectual disability? Does he have emotional disorder?
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So there's, there's so many of, there's a lot of what we call eligibilities.
And once they do the assessment, which is usually a lot of the assessments, and make sure that they
are assessments, not screeners, because some school districts like to just do screeners.
The assessments are thorough and what you're, so you get those assessments, you sit down with the
(18:29):
IEP team, and the IEP team is going to include the parent, the teacher, a special education teacher,
somebody from the district, from the school district, and also a general education teacher,
anyway, there's speech and language, an SLP (Speech-Language Pathologist), or an OT,
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depending what it is, what the, what they find on the assessment. They come back,
and we're looking at everything there, and we develop goals, and we develop that plan,
the educational plan. How is this kiddo going to work? What are the goals that we
have for him, her, for the next year? So that's the difference right there.
(19:16):
Well, that's really helpful, and I sort of stumbled through a lot of
that myself. And so what is THRIVE? You've mentioned this a couple of times, you know,
what is that framework? What does that stand for?
So here's what it is. So T is Teamwork. And you, if you have a complex kiddo,
(19:43):
you got to have a team around you. And the team that I'm talking about,
it's like a medical team. If your kiddo has ADHD, or you should go see a developmental
pediatrician. If they have a speech and language issue, then a speech pathologist.
So you got to create that team around your child. So it's not just you, okay,
(20:10):
because you can't do it all alone, because you don't know everything. So you got to have help.
Then it's the H. The H is probably the deepest one that we go into. And it's what I call the
Help Systems. And that is school districts, how to talk to them, all the crazy acronyms that they
have that you have to learn their language. Same thing with insurance companies, right?
(20:35):
If you have a kiddo who has the complexities, chances are that you're going to be getting
either occupational therapy, physical therapy, speech therapy. And so you're
going to be using your insurance a lot. And so you need to speak insurance language.
And then there's the third, which is the other H,
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and that is the state funded programs. Each state has their own programs, so you got
to learn which programs they are and how to use them. So that's the H, the help systems.
The R are the relationships. And when I'm talking relationships, I'm talking within the family,
extended family, friends, and they need to be aware of what it is that's happening. And you
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have to communicate to them, these are the things that are happening with him or her.
And just so you know, this is how we deal with certain things. So it's really bringing
the relationships, the people around you and getting that, building that village, really,
(21:44):
but a personal village, right? That's going to be around your child. Okay. That's the R. I.
I is for integration. It's for me. It's myself. If you're not well, if a mom is not well,
their kiddo is not going to be well. Take the time. You have to take care of yourself because
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we always put the kids first and then we lose ourselves in the whole thing. And
then we're a disaster. And then they are also disasters because they follow that.
The V is validation. It's my favorite. You have to celebrate the small wins. When you are a special
needs mama, when you have a complex kiddo, things are going to move slower than they would with
(22:31):
your neurotypical child. And those small wins, it might be that today he said the word more,
or finally he was able to say, mom, those are the small wins that you hold on to
for the future because that's what gets you by. So validate it, like celebrate it,
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jump up and down with your child because this is really important to him and to you.
And then the last one is E and the E is expect the miracle. So if you go through all of this,
then you're going to get to a point where you're going to say, you know what? This is a miracle.
We have done all of these things with all of the issues and disability or anything,
(23:23):
like the complexities. We have gotten to this point. So that's THRIVE.
I love that. And I just want to add when you were talking about the teamwork and that when I was
trying to figure it out with Ernest in like first or second grade, I brought a friend with me who,
(23:49):
you know, had a deep background in special education because I felt like I was not
communicating effectively with the school system. And so I brought this friend and we
all sat around the table and, you know, and talked about the testing and everything. And they said,
well, why is she here? And I said, well, she's going to interpret for me. And they were like,
(24:12):
interpret? I'm like, yes, interpret, because I wrote you a letter and you didn't understand
what I was asking. And so then I had to rewrite it to put it in your language.
So I obviously don't speak your language. And that really gave me the self-confidence. And I
think because I was an older mom, I had enough self-confidence to find somebody to help me.
(24:36):
And that's where advocates come in, right? Right. So I help other families. I am an
advocate for other families. And I'm also an advocate for my son. That's kind of how
I learned all of this. And since I started being an advocate, I was and I always had
somebody that would come in and help me. Like, you know, I always had speech and language,
(24:57):
an SLP there. I had OT there. I had a BCBA (Board Certified Behavior Analyst) there. I
had all these people in the IEP table. But I finally got an advocate. And can
I tell you the weight off of my shoulders when I don't have to play advocate and mom
(25:19):
at the same time in the IEP meeting? It changes. It's like it's so much better.
Well, advocates are often available through the school system, too,
right? So you don't, you don't have to pay for an advocate. Is that true?
Mm-hmm. I… no.
(25:43):
Well, let's dispel the myths right here.
Yes. So there, there are advocacy places that you can go to usually
its through your state. And so they do have those, you know. Using an advocate
from the school district is kind of going to backfire on you in a little, in a way,
right? Because you, you want to get the best for your child, but the school district doesn't
(26:08):
want to give you all of that. And so if the advocate is also with the school district,
you're not going to see that - it's kind of a conflict of interest in a way.
So there are advocates that are pro bono. They do things pro bono. There are other
(26:28):
advocates that will charge you. There are advocates through your hospital, your child's,
like children's hospitals. And so there are a lot of ways of getting an advocate. And I
truly believe that even if you don't have an advocate, parents just listen to this:
(26:50):
You can bring anyone to the IEP table. You have the right to bring someone.
So in your THRIVE, you also talk about the I and the self-care. And I, you know,
I think that's one of the biggest struggles that moms have is prioritizing ourselves as
(27:14):
we're juggling work and family and advocating for your son. So,
what tips do you have around that and how do you avoid the burnout?
It's a great question because sometimes, Suzy, I'm not kidding you,
I tell my moms this. I understand how hard it is because you want to put them as number one,
(27:39):
and they should be. Like they deserve everything that you have, but if you don't have enough in
the tank, you're only going to give them half of what you have in a tank.
So sometimes it is just pulling over on the side of the road and taking a couple
of deep breaths. Sometimes that's all it takes, right? Just do what makes you feel
(28:05):
good. Like just take a little bit. It doesn't have to be long. Just a little bit of time.
Right. One of our first podcasts we did was about mindfulness.
One of the things that I think is very important just about that self-care is
that you're also teaching your children how to care for themselves, too, because at the end,
(28:29):
we want to launch our kids to be able to have the fullest life that they possibly can and to
take care of themselves. And so if we don't, you know, show them the way, we're sort of
doing not only ourselves a disservice, but we're doing them a disservice, too.
Yes.
So what does thriving look like now for your son, you know, after all these developmental delays?
(28:54):
Today, we actually went to the ophthalmologist, and we're trying to figure out glasses and things
like that. But the ophthalmologist looked at him and he was like, I've been seeing you since you
were little. I think he's been, you know, he's been going there since he was a baby,
because when you're a premature, there might be some eye issues. And so he's been going there and
(29:17):
he looked at him and said, “you are so grown up.” And it's true. He weighs 90 pounds now, he's 11.
And you know, he he makes friends at school. He knows everybody. He walks around and says,
Hi, hi. And everybody, hi, Drake, hi, Drake, you know, and that is what's looking like right now.
(29:38):
And I love seeing that, because for the longest time, I remember the crying at night,
which I don't want to remember, but I do. You know, crying at night, not being able to sleep,
the non-speaking, and so all the aggression that came with that, because he couldn't communicate.
There's so many things that I look back and I think he has come so far, and I just
(30:10):
love watching him doing these new things, being himself, like finding his personality. Now that
he can communicate, now that he has friends, and now that he can go around the block on
his own and kind of ride his scooter around. (Right.) Those are the things that is thriving.
(30:31):
I love that. Independence, happiness, you know, making his own community. Love it.
Yes. Thank you.
So where should moms go for, you know, information, resources,
online in their state? What do you recommend?
(30:54):
So I have actually a Facebook group that's called THRIVE. So if anybody,
it's free. I do lives in there, I do presentations, we talk a lot about IEPs,
we talk about other things too. So you can, and I'll send you the link so you can put it on there,
but I also, there are a lot of information, there's a lot of places out there.
(31:17):
So you know, in your state, just look in your state funded programs for early intervention. I
think that everybody should look into their state, because it is a federal law that from 0 to 3,
the state actually should be taking care of the children. From 3 on, it becomes a school district
(31:44):
thing. And so from one to three, if you have a child from 1 to 3, go find your state funded
programs, because they're going to cover those therapies and early interventions for you.
Then the school district, the special education,
IDEA (Individuals with Disabilities Education Act), it's online, you can look at it. There's a
(32:05):
lot of laws in there, but I do a lot of those, the teaching on that, looking at the law. So find me,
that's basically what I'm saying. Find me and I'm going to direct you to whatever it is. And Suzy,
if anybody, I do free calls. And so anybody, they can go to my website,
(32:25):
specialeducationconcierge.com, and just schedule a call with me, and I don't charge for that,
and I will lead you to where it is that you need to go. No problem.
That's wonderful and generous. And I will include all of those links
and resources on the mothersofboys.life webpage. I create a page for each podcast.
(32:50):
Michelle, you and I have talked about even creating a little resource page. I also do
resource pages on the website. And so I hope in the future we're going to be able to share that
with just the collaboration of resources. And so it's kind of one-stop shopping.
I would love to do that.
(33:11):
…for parents. So I ask all of our guests at the end of the podcast to share a motto
or a guiding thought or something that a mom can say to themself when they're
in the thick of it and trying to figure it out. So what did you say to yourself?
(33:31):
You are not alone. You are your child's hero.
Yeah, supermom.
You know, really for me, I have to remember that if I don't do it, nobody else is going to
do it for my kiddo. And so I am his hero. I'm the one that's doing this for him,
(33:56):
that's helping him. And sometimes we do feel alone as moms, but you're not. There are a lot
of moms going through the same things that you are going through. And that is how you
build your village is by finding moms, finding people who understand what you're going through.
(34:18):
And you can talk to each other, you can listen to each other, and you can raise each other up.
So I can see your cape fluttering behind you as you go.
Yeah, seriously.
Bravo to you. And I just want to thank you for coming on the show and sharing
(34:44):
all your experience and your expertise and your story. So we appreciate it.
Well, thank you for having me. I loved talking to you. You have the
greatest questions. This has been great. Thank you for having me.
And for everyone, I'm just going to reinforce that if you go to the mothersofboys.life
website, you can find additional links to this program. You can also find Michelle's podcast:
(35:12):
Complex Kids, Simple Solutions, and the Mom Panel on your favorite
podcast platform. Thank you again. And thank you all for joining us.
Follow the MOB, the Mothers of Boys, that's the community, on Facebook, Instagram, YouTube,
and your favorite podcast platform. And above all, moms, be kind to yourself.
Parenting Boys with Special Needs, Advocacy, Hope, and the THRIVE Framework
This is Suzy Shaw, mom of now two adult boys and author of the book and podcast,
Mother of Boys Survival Guide.
Some children don't follow the expected developmental timeline. There may be
(00:21):
physical delays, language may take longer than in other kids, some struggle in ways
that don't fit neatly into a diagnosis, or they receive a diagnosis that's so rare that there's
no clear path forward. And when that happens, moms often feel like they've been dropped into
(00:43):
a system with no roadmap. Appointments, evaluations, acronyms, waiting lists.
Today, we're talking about raising what my guest calls “complex kids,” not broken kids,
not less than kids, but complex kids. And then the mothers who are learning how to advocate,
(01:06):
support, and help them thrive. Michelle Choairy is a working mom of two kids, a special education
concierge, founder of Wisdom for Complex Kids, and the THRIVE Program. She also is the host of
two podcasts:, Complex Kids, Simple Solutions, and The Mom Panel, where she blends expert
(01:33):
guidance with heartfelt conversations to support parents raising neurodivergent and complex kids.
Welcome, Michelle.
Oh, thank you, Suzy, for having me. And that was a wonderful introduction. Thank you.
Well, you have definitely a busy life going
on with two kids and working and podcasts. And so, bravo to you.
(02:00):
Oh, thank you. Sometimes I don't know what's right and what's left, so ...
Don't we all. Yes. So, I appreciate you being on the show. And I understand there's a wide range
of challenges that parents and individuals might need to face. So, can you please share
(02:22):
your story and when you became aware of your son, and just tell us a little bit about your family?
Sure. So I was an older mom. I was what's called a geriatric pregnancy. And so I was 38 when I
got pregnant with my son. And we had a lot of ultrasounds, we had all of those things. And
(02:47):
when I was at 29 weeks, all of a sudden, I go for an ultrasound and they say, you got to go to the
hospital right now. He has no amniotic fluid, he's not moving. And I was like, oh my gosh.
So three weeks on bed rest, and then he was born two months premature. So he was eight weeks early.
(03:09):
The hospital where he was born, they followed the kiddos that were in the NICU
for a period of time. And every time we went in, there was something that they would look at,
oh, he's delayed in this, oh, he's delayed in that. And for a while,
if you have a NICU baby, you have to take into consideration that they were eight weeks early.
(03:36):
But he was still lagging. When he got to about 18 months, he wasn't eating correctly. Like I
could tell that something was going on. And so I went and I searched and I searched for somebody
who could help me. And it was an occupational therapist that said, there's something here,
(03:57):
I see it. Because everybody at the time would just say, “oh, he's going to be fine.
There's nothing there.” But mama gut usually tells you that there's something going on,
and then that's when you, I was the crazy mom going around trying to figure all this out.
Okay. Not crazy, because I think that mama gut is so important,
(04:18):
and moms discount it, and we shouldn't. Right?
Yes. But that's the thing, right? They look at you and they go, what is this woman doing?
And really, truly, we're advocating. We know that there's something that mama gut,
tell everybody, you have to follow that. Just follow it.
(04:38):
Because two things are going to happen. It's either going to say, oh no, it's nothing,
and give you the peace of mind that it's nothing, or it's going to give you an answer. Okay,
there's something here, and what do we do from now? So it's a 50-50 chance,
and at least you'll know. You'll have an answer one way or the other.
(05:00):
And through the years that mama gut just couldn't place it, I was like,
you know, he has a speech disorder, but he has some other things. He has
developmental delays. He has all these things. He didn't really fit the autism,
and so everybody that I would go to, they would say, I just don't see it, because he's so social,
(05:25):
and it wasn't until he was eight years old that we finally got a genetic testing done, and it
comes back with what's called TBR1. And when I look it up, there is 1 research about it that
was done many years ago, but with rats, and then I find a Facebook group, and we were number 42.
(05:54):
And everybody in the group had the same genetic testing disorder, right?
Correct. So the interesting thing is that they started testing for TBR1
earlier in Europe. So there were a lot of kiddos in Europe that had been diagnosed with TBR1,
(06:14):
and the ones in the United States, they came around the same time that we started,
and we're at about 230 now from the time that we started. We really think
that genetic testing is coming a lot earlier and sooner, so we're seeing
more of the kiddos come in, but it wasn't until he was eight that we figured this out.
(06:40):
It's so hard to listen, to hear that there's something, and as a mom, you're like, okay,
that was the answer. I didn't eat too much Taco Bell and didn't drink too
much Dr. Pepper, and that was not the reason why my kiddo was so far behind,
right? Because it's in the DNA. It was when the egg was fertilized,
(07:03):
the DNA formed, and that's just how it was. It's been a big, long story there.
And how old is he now?
He's 11. He's 12 in April, so he's very excited to turn 12.
And probably a Tarus, so I have a Taurus,
(07:27):
too. And I was an older mom. I didn't have my second son until I was 37,
and my first son when I was 35, and I aged, I think, 150 years in that second pregnancy.
It's so true. It is so true. The madness that
(07:48):
comes with the second child, it's like they overtake you.
For moms who are just starting to feel as though something is off in their child,
what do you think the first signs are that maybe they shouldn't ignore?
So if you feel like there's something going on, follow through with that. I
(08:14):
think that the pediatrician, they're usually your first go-to, right? But I will tell you,
the pediatricians are usually not great at finding these things. They're very kind of like what I
was just saying, oh, it's going to get better with time. And they don't like to really give
a diagnosis until things are a little bit more of a problem. And so it's a hard thing to do.
(08:43):
But for us, what worked is that, okay, there's a speech, like he's delayed in speech. Okay,
then let's go find a speech therapist. Okay, he can't hold a spoon or a fork correctly. Okay,
we need to go to an OT (Occupational Theripist) who's going to teach more fine motor skills.
(09:06):
And when you feel those things are behind, that is when you need to go and you need to look for help.
Don't let people tell you that, oh, it's going to be okay. So-and-so didn't speak
until they were 10. That might be the case, but early intervention is the
(09:29):
best thing that you can do as a mother for your children. So if you have that moment,
if something is telling you, go find somebody who can help.
And I think that early intervention is so important today that, you know,
(09:51):
wasn't necessarily there in the past. And I will share that I was born with
a congenital hip dislocation, which wasn't identified until I was around one. I was in
a full body cast from one to two because that's what they did. And physical therapy hadn't really
(10:12):
been invented. So they took an x-ray when I came out of the cast and said, good to go, bye-bye,
see you later. So at, you know, two, three, after being atrophied for a year, I was learning how
to walk. And so I never really learned how to go upstairs. I don't go upstairs well. To this day,
(10:36):
I don't really run. And I've always thought that everybody has a disability. And that's
what I taught my kids, is that everybody has a disability. And some of us know what it is.
I love that. I absolutely love that.
(10:56):
So you know, the idea of complex kids, which is, you know, what you call them,
I mean, we're all sort of complex, but I love that too because, you know,
kids with some additional needs, some special needs are more complex. How
did you sort of come up with that name? And I imagine it's pretty well received.
(11:18):
When I started doing THRIVE, which is my framework that I teach the parents,
I was thinking, you know, I don't want to differentiate the disabilities. I don't want
to label them. Because when you label them, then you're going to be saying that what I'm
(11:40):
teaching right here is just for the kids who have autism, or it's just for the kids... And then
it just loses what it truly is supposed to mean, right?
So you shoehole them, right? And then they don't necessarily strive in addition to thriving,
(12:03):
right? Because they don't think they can, right?
Correct. Yeah. And so I was talking to a friend of mine who also has a complex kiddo,
and all of a sudden we're just like, wait a second, they're complex. That's all they are. And
it was true. They were just a little more complex than the usual kiddos, the neurotypical kiddos.
(12:27):
So I want to differentiate, because what happens is this. No matter what, if you have a child who
has the complex needs, or if you want to say special needs, if you want to use that word,
they have to do the same things. And so that's when THRIVE and complex kids kind
of came together. It was like, you know, it's a little complex. But just a little bit more,
(12:51):
I have to do more for him than I do for my daughter, who is neurotypical.
So, you know, the early intervention, critical. So is your son currently in public school?
He is. He just came back to public school, to the school district. We had him in what we call here,
(13:13):
it's a non-public school. We thought that it was going to be a better placement for him because
they're smaller classroom sizes. And so more one-to-one attention, but it turned out that
it didn't work. And so we're like, you know what, let's bring him back to the school district. And
to be honest, he's thriving there. And I kind of wish that I would have brought him back sooner.
(13:37):
But early intervention, I'm telling you,
there's nothing like it. If you get them where they like, as soon as that mama gut shows up,
go do it, go get some help because it makes a difference. My son is 11. I think that
had we not started so early, I don't think that he would be speaking today.
(14:03):
So in my book, I call my boys Ernest and Exuberance. And, Ernest is a little bit
neurodivergent. And I remember going to the school in, I don't know, first or second grade
(14:24):
and saying, I think he needs to be tested so that we have a better plan for him going through the
public school system. And I wrote a letter and I turned it in and I heard nothing. And so I
was telling my sister-in-law about this and she said, well, did you use the word, did you say
(14:46):
IEP? And I said, what's an IEP? I don't know. Why would I say that? You know, let me just throw
random letters onto a page. And so I rewrote the letter. I used the word IEP asking about testing.
And within 30 days, you know, instantly I get this answer back that I didn't the first time.
(15:08):
So can you help us understand a little bit about how the school system and the IEP and
the 504 and all those sort of, you know, plans when you're going to public school?
Sure. Now with my advocacy, like this is something that I, I really,
I love looking at this. And so what you just explained is actually a law that's called Child
(15:36):
Find. And so the parents or the teachers, anybody in the school district should be looking for the
kiddos who are in need of special education or any kind of, or related services. Okay.
So once, if you are a parent and you feel like something is off and you have the right
(16:04):
and you should send a letter or an email to the school district requesting assessments
due to these concerns, and then you list your concerns on the email, they have 15 days to
get back to you on this, and then they have to do assessments. It's, it's the law. Okay.
(16:29):
So let's talk about the difference. I think that there's a misconception and misunderstanding on
what a 504 and an IEP is. A 504 is for accommodation. So let's say, the kiddo
has ADHD. Okay. So some of the first, like the first things that they do a lot of times is they
(16:55):
put them on a 504. And the reason they put it on a 504 is because it's a lot less involved. So let's
just say some of the accommodations that you have that they would have would be longer testing time,
or they can be read the, the question, uh, they can sit closer to the teacher in the classroom.
(17:22):
So these are what we call accommodations. An IEP, on the other hand, it is very thorough.
And that's an Individual Education Plan?
Correct. Yes. Okay. So what that does is they are going to do full assessments on
(17:43):
the kiddo and they're going to find where is the disability? Does he have a speech and
language impairment? Does he have something like the ADHD, which would be under other
health impairment? Does he have intellectual disability? Does he have emotional disorder?
(18:07):
So there's, there's so many of, there's a lot of what we call eligibilities.
And once they do the assessment, which is usually a lot of the assessments, and make sure that they
are assessments, not screeners, because some school districts like to just do screeners.
The assessments are thorough and what you're, so you get those assessments, you sit down with the
(18:29):
IEP team, and the IEP team is going to include the parent, the teacher, a special education teacher,
somebody from the district, from the school district, and also a general education teacher,
anyway, there's speech and language, an SLP (Speech-Language Pathologist), or an OT,
(18:51):
depending what it is, what the, what they find on the assessment. They come back,
and we're looking at everything there, and we develop goals, and we develop that plan,
the educational plan. How is this kiddo going to work? What are the goals that we
have for him, her, for the next year? So that's the difference right there.
(19:16):
Well, that's really helpful, and I sort of stumbled through a lot of
that myself. And so what is THRIVE? You've mentioned this a couple of times, you know,
what is that framework? What does that stand for?
So here's what it is. So T is Teamwork. And you, if you have a complex kiddo,
(19:43):
you got to have a team around you. And the team that I'm talking about,
it's like a medical team. If your kiddo has ADHD, or you should go see a developmental
pediatrician. If they have a speech and language issue, then a speech pathologist.
So you got to create that team around your child. So it's not just you, okay,
(20:10):
because you can't do it all alone, because you don't know everything. So you got to have help.
Then it's the H. The H is probably the deepest one that we go into. And it's what I call the
Help Systems. And that is school districts, how to talk to them, all the crazy acronyms that they
have that you have to learn their language. Same thing with insurance companies, right?
(20:35):
If you have a kiddo who has the complexities, chances are that you're going to be getting
either occupational therapy, physical therapy, speech therapy. And so you're
going to be using your insurance a lot. And so you need to speak insurance language.
And then there's the third, which is the other H,
(20:55):
and that is the state funded programs. Each state has their own programs, so you got
to learn which programs they are and how to use them. So that's the H, the help systems.
The R are the relationships. And when I'm talking relationships, I'm talking within the family,
extended family, friends, and they need to be aware of what it is that's happening. And you
(21:18):
have to communicate to them, these are the things that are happening with him or her.
And just so you know, this is how we deal with certain things. So it's really bringing
the relationships, the people around you and getting that, building that village, really,
(21:44):
but a personal village, right? That's going to be around your child. Okay. That's the R. I.
I is for integration. It's for me. It's myself. If you're not well, if a mom is not well,
their kiddo is not going to be well. Take the time. You have to take care of yourself because
(22:05):
we always put the kids first and then we lose ourselves in the whole thing. And
then we're a disaster. And then they are also disasters because they follow that.
The V is validation. It's my favorite. You have to celebrate the small wins. When you are a special
needs mama, when you have a complex kiddo, things are going to move slower than they would with
(22:31):
your neurotypical child. And those small wins, it might be that today he said the word more,
or finally he was able to say, mom, those are the small wins that you hold on to
for the future because that's what gets you by. So validate it, like celebrate it,
(22:56):
jump up and down with your child because this is really important to him and to you.
And then the last one is E and the E is expect the miracle. So if you go through all of this,
then you're going to get to a point where you're going to say, you know what? This is a miracle.
We have done all of these things with all of the issues and disability or anything,
(23:23):
like the complexities. We have gotten to this point. So that's THRIVE.
I love that. And I just want to add when you were talking about the teamwork and that when I was
trying to figure it out with Ernest in like first or second grade, I brought a friend with me who,
(23:49):
you know, had a deep background in special education because I felt like I was not
communicating effectively with the school system. And so I brought this friend and we
all sat around the table and, you know, and talked about the testing and everything. And they said,
well, why is she here? And I said, well, she's going to interpret for me. And they were like,
(24:12):
interpret? I'm like, yes, interpret, because I wrote you a letter and you didn't understand
what I was asking. And so then I had to rewrite it to put it in your language.
So I obviously don't speak your language. And that really gave me the self-confidence. And I
think because I was an older mom, I had enough self-confidence to find somebody to help me.
(24:36):
And that's where advocates come in, right? Right. So I help other families. I am an
advocate for other families. And I'm also an advocate for my son. That's kind of how
I learned all of this. And since I started being an advocate, I was and I always had
somebody that would come in and help me. Like, you know, I always had speech and language,
(24:57):
an SLP there. I had OT there. I had a BCBA (Board Certified Behavior Analyst) there. I
had all these people in the IEP table. But I finally got an advocate. And can
I tell you the weight off of my shoulders when I don't have to play advocate and mom
(25:19):
at the same time in the IEP meeting? It changes. It's like it's so much better.
Well, advocates are often available through the school system, too,
right? So you don't, you don't have to pay for an advocate. Is that true?
Mm-hmm. I… no.
(25:43):
Well, let's dispel the myths right here.
Yes. So there, there are advocacy places that you can go to usually
its through your state. And so they do have those, you know. Using an advocate
from the school district is kind of going to backfire on you in a little, in a way,
right? Because you, you want to get the best for your child, but the school district doesn't
(26:08):
want to give you all of that. And so if the advocate is also with the school district,
you're not going to see that - it's kind of a conflict of interest in a way.
So there are advocates that are pro bono. They do things pro bono. There are other
(26:28):
advocates that will charge you. There are advocates through your hospital, your child's,
like children's hospitals. And so there are a lot of ways of getting an advocate. And I
truly believe that even if you don't have an advocate, parents just listen to this:
(26:50):
You can bring anyone to the IEP table. You have the right to bring someone.
So in your THRIVE, you also talk about the I and the self-care. And I, you know,
I think that's one of the biggest struggles that moms have is prioritizing ourselves as
(27:14):
we're juggling work and family and advocating for your son. So,
what tips do you have around that and how do you avoid the burnout?
It's a great question because sometimes, Suzy, I'm not kidding you,
I tell my moms this. I understand how hard it is because you want to put them as number one,
(27:39):
and they should be. Like they deserve everything that you have, but if you don't have enough in
the tank, you're only going to give them half of what you have in a tank.
So sometimes it is just pulling over on the side of the road and taking a couple
of deep breaths. Sometimes that's all it takes, right? Just do what makes you feel
(28:05):
good. Like just take a little bit. It doesn't have to be long. Just a little bit of time.
Right. One of our first podcasts we did was about mindfulness.
One of the things that I think is very important just about that self-care is
that you're also teaching your children how to care for themselves, too, because at the end,
(28:29):
we want to launch our kids to be able to have the fullest life that they possibly can and to
take care of themselves. And so if we don't, you know, show them the way, we're sort of
doing not only ourselves a disservice, but we're doing them a disservice, too.
Yes.
So what does thriving look like now for your son, you know, after all these developmental delays?
(28:54):
Today, we actually went to the ophthalmologist, and we're trying to figure out glasses and things
like that. But the ophthalmologist looked at him and he was like, I've been seeing you since you
were little. I think he's been, you know, he's been going there since he was a baby,
because when you're a premature, there might be some eye issues. And so he's been going there and
(29:17):
he looked at him and said, “you are so grown up.” And it's true. He weighs 90 pounds now, he's 11.
And you know, he he makes friends at school. He knows everybody. He walks around and says,
Hi, hi. And everybody, hi, Drake, hi, Drake, you know, and that is what's looking like right now.
(29:38):
And I love seeing that, because for the longest time, I remember the crying at night,
which I don't want to remember, but I do. You know, crying at night, not being able to sleep,
the non-speaking, and so all the aggression that came with that, because he couldn't communicate.
There's so many things that I look back and I think he has come so far, and I just
(30:10):
love watching him doing these new things, being himself, like finding his personality. Now that
he can communicate, now that he has friends, and now that he can go around the block on
his own and kind of ride his scooter around. (Right.) Those are the things that is thriving.
(30:31):
I love that. Independence, happiness, you know, making his own community. Love it.
Yes. Thank you.
So where should moms go for, you know, information, resources,
online in their state? What do you recommend?
(30:54):
So I have actually a Facebook group that's called THRIVE. So if anybody,
it's free. I do lives in there, I do presentations, we talk a lot about IEPs,
we talk about other things too. So you can, and I'll send you the link so you can put it on there,
but I also, there are a lot of information, there's a lot of places out there.
(31:17):
So you know, in your state, just look in your state funded programs for early intervention. I
think that everybody should look into their state, because it is a federal law that from 0 to 3,
the state actually should be taking care of the children. From 3 on, it becomes a school district
(31:44):
thing. And so from one to three, if you have a child from 1 to 3, go find your state funded
programs, because they're going to cover those therapies and early interventions for you.
Then the school district, the special education,
IDEA (Individuals with Disabilities Education Act), it's online, you can look at it. There's a
(32:05):
lot of laws in there, but I do a lot of those, the teaching on that, looking at the law. So find me,
that's basically what I'm saying. Find me and I'm going to direct you to whatever it is. And Suzy,
if anybody, I do free calls. And so anybody, they can go to my website,
(32:25):
specialeducationconcierge.com, and just schedule a call with me, and I don't charge for that,
and I will lead you to where it is that you need to go. No problem.
That's wonderful and generous. And I will include all of those links
and resources on the mothersofboys.life webpage. I create a page for each podcast.
(32:50):
Michelle, you and I have talked about even creating a little resource page. I also do
resource pages on the website. And so I hope in the future we're going to be able to share that
with just the collaboration of resources. And so it's kind of one-stop shopping.
I would love to do that.
(33:11):
…for parents. So I ask all of our guests at the end of the podcast to share a motto
or a guiding thought or something that a mom can say to themself when they're
in the thick of it and trying to figure it out. So what did you say to yourself?
(33:31):
You are not alone. You are your child's hero.
Yeah, supermom.
You know, really for me, I have to remember that if I don't do it, nobody else is going to
do it for my kiddo. And so I am his hero. I'm the one that's doing this for him,
(33:56):
that's helping him. And sometimes we do feel alone as moms, but you're not. There are a lot
of moms going through the same things that you are going through. And that is how you
build your village is by finding moms, finding people who understand what you're going through.
(34:18):
And you can talk to each other, you can listen to each other, and you can raise each other up.
So I can see your cape fluttering behind you as you go.
Yeah, seriously.
Bravo to you. And I just want to thank you for coming on the show and sharing
(34:44):
all your experience and your expertise and your story. So we appreciate it.
Well, thank you for having me. I loved talking to you. You have the
greatest questions. This has been great. Thank you for having me.
And for everyone, I'm just going to reinforce that if you go to the mothersofboys.life
website, you can find additional links to this program. You can also find Michelle's podcast:
(35:12):
Complex Kids, Simple Solutions, and the Mom Panel on your favorite
podcast platform. Thank you again. And thank you all for joining us.
Follow the MOB, the Mothers of Boys, that's the community, on Facebook, Instagram, YouTube,
and your favorite podcast platform. And above all, moms, be kind to yourself.
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