Michelle C: Postpartum, Preemies, and the Fight to Be Heard

In this episode of Quiet Connection, Michelle shares her powerful journey through preterm birth, postpartum depression, and parenting a medically complex child. From NICU struggles to finally receiving a rare genetic diagnosis—TBR1—for her son, Michelle opens up about trusting her instincts, navigating the system, and building the support she wished she’d had. Her story is a reminder that you’re not alone—and that no one knows your child like you do. 

To learn more about Michelle, visit her Instagram or her Website.

Takeaways

• Michelle is a mother of two, including a special needs child.
• She emphasizes the importance of raising awareness about parenting special needs children.
• Michelle's journey began in Brazil, where she was a ballerina before moving to the US.
• She married at 36 and had her first child at 39.
• Michelle experienced difficult pregnancies, including low amniotic fluid.
• Her son was born prematurely and spent time in the NICU.
• The NICU nurses played a crucial role in her early parenting experience.
• Michelle had to navigate postpartum depression after her son's birth.
• Support systems are vital for parents, especially during challenging times.
• Michelle reflects on how her past experiences shaped her identity as a mother. Getting help was crucial for my mental health.
• Community support makes a significant difference.
• Early intervention is vital for developmental delays.
• It's important to trust your instincts as a parent.
• Diagnosis can provide validation and understanding.
• Self-care is essential for caregivers' well-being.
• Every child's journey is unique and should be respected.
• Building a village around you is necessary.
• Patience is key in navigating parenting challenges.
• You are not alone in your struggles.

Sound Bites

"I'm a mom of a complex kid."

"I left Brazil to come to the US."

"I got married super late."

"I had to, because I was really falling apart."

"You have to take care of yourself."

"Patience, my friend. Patience."

Transcript

Chelsea (00:01)
Welcome to Quiet Connection, a podcast dedicated to ending the stigma around postpartum mental health. I'm Chelsea. This week, I'm connecting with Michelle as she shares her journey through motherhood, focusing on her experiences of parenting a medically complex child. We reflect on her pregnancy and preterm birth experiences and how they influenced her choice to have another child. Michelle emphasizes the importance of having a strong support system

to effectively advocate for yourself and your family's needs. Here's Michelle.

Chelsea (00:36)
Hello, today I'm here with Michelle. Michelle, how are you?

Michelle Choairy (00:41)
Good, Chelsea, how are you?

Chelsea (00:43)
I'm good. We were both just talking about how it's a Monday morning. It's a miracle that we're up and doing anything.

Michelle Choairy (00:53)
Correct, and it's 6 a.m. my time, so this is great.

Chelsea (00:57)
Yes, it's 6 a.m. on Michelle's side of the country and it's 9 a.m. on mine and and I'm still I said you're doing way better than I am I'm I'm still not with it, but it's a Monday. Well, I'm really excited to have you on. I'm excited to get to know you more and to just chat.

Michelle Choairy (01:07)
It

Chelsea (01:17)
But I'll dive right in like I always do. And I will ask you my go-to question. I would love to know a little bit more about Michelle, about who you are now and who you were before you had kids.

Michelle Choairy (01:33)
⁓ I like that. Because my identity these days, you know, it's who I am now and not so much about who I was. So.

Chelsea (01:36)
Hahaha

Yeah!

Michelle Choairy (01:45)
You know, I'm a mom and I'm mom of two kids, a 10 and a seven year old. My 10 year old is what I like to call a complex kid. He's got, he's a special needs child. And who I am today is really, I'm a mom of a complex kid and a seven year old going on 16. So we are, you know, it's a busy, busy.

Chelsea (02:08)
Ha ha!

Michelle Choairy (02:14)
household and we but we have fun and I've been really working a lot on trying to bring awareness about parenting, special needs. My son has a genetic disorder that he's one out of 200 kids in the world so really bringing that awareness and bringing that to my family, to the world is very important to me. So I started

what's called collective wisdom for complex kids. And we are out there just trying to help these mamas. They're just starting the journey that I was in about eight, nine years ago. Now, who's Michelle prior to this? Michelle was born and raised in Brazil until she was 17 years old.

I was a ballerina and I left Brazil to come to the US when I was 17 and I said, bye mom, bye dad, I'm gonna go. And I found a family that would take me in and it was in, I went from a three million people city to Pocatello, Idaho, which is like a tiny, tiny little place. And.

Chelsea (03:31)
Yeah

Michelle Choairy (03:32)
And I lived in Focotello, Idaho for a few months. And then I went to an even smaller place called Rexburg, Idaho. And it's where these days they call Brigham Young University, Idaho. But back then it was called Ricks College. It was a two year school. honestly, it was the coldest I have ever been in my life.

Chelsea (03:57)
Ha ha ha!

Michelle Choairy (03:58)
because

it snows all the time. So there's this Brazilian girl coming from, you know, I mean, bikinis all the time, being out in the sun to winter. And I remember the first winter I was walking to school and I had snow up to like my ears. I was walking in this tunnel to get to school and I'm like, my gosh, what am I doing here? What am I doing?

Chelsea (04:07)
Right?

Michelle Choairy (04:23)
But it was a great time. I loved that school. I really enjoyed the time that I spent there. And that's where I met my husband, although we only dated for a week, and he dumped me after a week. But then 15 years later, he found me. So then that's when it worked out for us.

Chelsea (04:39)
my god!

Wow! I mean, I guess that's... They say it's all about timing, but my gosh!

Michelle Choairy (04:53)
No kidding, no kidding. Yes, it was all about timing. But, you know, I've been here for, I've been in the United States for 30 years. So I've been here a long, long time, but my family is still in Brazil. My brothers and sisters are still in Brazil and we go back quite a bit. So I speak fluent Portuguese and we go to Brazil a lot. So that's like my

entire life before I got married before being a mom. Yes. So I it's a different it's kind of a different Michelle. But had I not been who I was before I wouldn't be who I am today. So you know

Chelsea (05:24)
before being a mom. Yeah.

Yeah.

Absolutely. I love that you were a dancer. I danced too. I couldn't do ballet, and that was way too strict for me. I just, I don't know. That's such a cool story though. And of all places to find yourself, to go to Idaho. Yeah.

Michelle Choairy (05:53)
That's awesome!

I know. Seriously.

Chelsea (06:06)
And I feel you with the snow. am a native Vermonter. I'm born and raised and never left. we have snow this morning, actually. Yeah. Yeah.

Michelle Choairy (06:17)
my gosh, already? I guess it is almost

November.

Chelsea (06:23)
It is. Yeah, we usually start to get snow in October and yeah, I know the snow story and I don't, I don't like it. So you'd think I'd leave, but I don't. I just stay here. But anyway, so you met your husband, you met your husband in, when you were in college, wasn't the time for the two of you. Despite that,

Michelle Choairy (06:37)
Yeah. Anyway.

Chelsea (06:50)
When you were sort of growing up and going through everything, I guess not despite that, but like in addition to that, were kids always something you were thinking about or was that not really on your priority list?

Michelle Choairy (07:02)
So I would lie to say that it wasn't because I was back then.

I to a Mormon school. So I was Mormon. I grew up Mormon in Brazil and I came and I was at a Mormon school. So what you do is you get married and you have children, right? But I was the one that was the, I don't know, can't remember. Somebody said that we were menace to societies or something like that until if you didn't get married or had children. I had these roommates that that's what

Chelsea (07:23)
Mm-hmm. Mm-hmm.

Michelle Choairy (07:40)
That was the whole entire goal of being in college was to get married by the end of the year and like their freshman year. I was never like that. And I didn't get married until I was 36. So I was the late, the late, I don't know what you want to call it, but I got married super late. And yeah, of course, I think that I did want to have kids, but...

Chelsea (07:52)
Mm-hmm.

Michelle Choairy (08:04)
I also, in my head, I was like, I'm too young to do this when I was in college. I wanted to finish college. I wanted to do things kind of in, I don't know if you want to say it the right way, but I always had opportunities. Like I had a scholarship in college and then I got my master's degree in Indiana at Indiana State. And I wanted to.

Chelsea (08:11)
Mm-hmm.

Michelle Choairy (08:31)
finish those things before really and maybe, I just had, was just dating the wrong people which I'll be honest, I probably was.

Chelsea (08:43)
Ha ha!

We've all had those relationships.

Michelle Choairy (08:45)
⁓

my gosh, yes. You you get into those relationships that you go, what was I doing for all that time? that wasted time, you know? But you go through that and that's life. You you do things, but yes, children, they are always in my mind.

don't think that I wanted to have many children. I come from a family of six and that was, gosh, my poor mom and dad.

Chelsea (09:15)
Mm-hmm.

Yeah, that's a lot.

Yeah, so you were like, you were like, that is not for me.

Michelle Choairy (09:24)
No, no, especially the way that my parents did it. They had three, they waited nine years and then they had three more. And so I'm the oldest of the second batch of kids is what we call it. I mean, we were kind of raised by my older siblings. And so to this day, you know, they're still like very involved in our lives.

But it's funny, it's funny because I mean, my parents, who knows why? Like nine years, nine years, and then you start diapers and bottles all over again. I don't know if that's something that I could do. Probably not.

Chelsea (09:56)
Yeah.

I only have two kids and they're seven years apart and that that still felt huge. Yeah, that felt huge. It's like, my god.

Michelle Choairy (10:15)
⁓ girl.

Yes. Yes, yes.

Chelsea (10:22)
I can't imagine your parents having three teenagers and then three kids that are like five or you know what, like under 10. You know what? my god, I can't picture that. It must have been very interesting.

Michelle Choairy (10:38)
My sister, my sister would get, I remember this she had a Fiat and it was a small little car and I remember they used to get us up in the morning and get us to school and she was the one that drove us. So we, all six of us were getting the car because we would go to the same school, it was a private school and they were just like

She was the one driving us and it was this little car that had no power whatsoever and I remember There's like this huge huge hill that every day we're like, please make it please make it please make it we're gonna make it

Chelsea (11:14)
Hahaha!

6U piled in the car. Please get up the hill, please. my gosh. my gosh.

Michelle Choairy (11:18)
Yes, yes, it was, yeah. I just thought about

that. I haven't thought about that in like probably 30 years, so that's a story that I haven't told anybody.

Chelsea (11:30)
That's so cool. Well, and I'm a car lover too. So like immediately when you say Fiat, I'm like, ooh, that's a really little car.

Michelle Choairy (11:38)
It is. It's a

tiny, tiny car. Yes.

Chelsea (11:41)
my gosh. Okay, so I love it. I get this great sense of who you sort of were You were having these life experiences and you were... I mean, yeah, we all have the people that we dated that were like, what the heck was I thinking?

But it also sounds like you had goals and you had things that you wanted to achieve. when, when did the shift have, I was gonna say, when did your husband wake up and realize? How did the shift happen that you guys reconnected?

Michelle Choairy (12:04)
Yeah.

You know, we so he was married to another woman before and he went through a divorce and I had I was dating somebody for a long time and I had moved to California and He actually does this gonna sound so taboo and so cliche, but he found me on Facebook and he looked at my picture and he goes

Chelsea (12:22)
Mm-hmm.

I love that.

Michelle Choairy (12:42)
You still look good. You still look good. And he's like, why don't you come visit me in Las Vegas? Because he's from Las Vegas. And I was like, my gosh, here I go. I haven't seen him in like 15, 10 years.

Chelsea (12:46)
You

Michelle Choairy (12:58)
So I get on a flight and I go to Las Vegas, he picks me up from the airport. Then we have a great weekend and then we started dating that way, like he would come down, I would go up there and then about a year later, he was like, well.

we kind of have to figure this out." And I said, I know. And so I was actually going to move up there. And then he said, no, I want to change my life. And he moved down to California. And we've been in Huntington Beach this whole time. I think we've been together. It was 2010 when we reconnected. 14, going on 15 years. And so, yeah,

Chelsea (13:21)
Yeah.

Yeah.

Michelle Choairy (13:45)
It's been a ride, I will tell you that. It's been a ride.

Chelsea (13:49)
Yeah. how did how did the conversation of just because this is a parenting podcast and I could literally talk to you about all of your life. I could talk to you about all of your life adventures and that would be amazing but to like steer us. ⁓ how did the conversation of kids come up with the two of you?

Michelle Choairy (13:58)
Of course.

Yeah. Yes.

come on, hurry up. I'm 38 and we got to do this if we're going to do it.

Chelsea (14:16)
That's that was just how it was. was like, hey, clock's ticking.

Michelle Choairy (14:21)
Pretty much, yes. I was like, well, first of all, I was like, okay, we gotta get married first. And then as soon as we got married, I'm like, we gotta do this, clock's ticking, I am getting older. And really, I had very hard pregnancies. And so I think back and I go, would it have changed had I got pregnant earlier?

Chelsea (14:22)
Yeah.

Michelle Choairy (14:45)
in my life, I don't know and who knows. But, you I was like, okay, we gotta do this because I don't want to be a 45-year-old parent to a baby. kind of how it was. And we got pregnant. had my son when I was 38, 39 about.

Chelsea (14:50)
Right.

Mm-hmm.

Michelle Choairy (15:15)
and his was an awful pregnancy. was, my gosh, I work in the, my day job is I am a sales rep for an orthopedic company and I sell orthopedic implants. And so I'm in the operating room all day long, just making sure that the surgeons are using my stuff the way that they need to use it. And so I'm constantly there. And

I'm on my feet all day long. And so I got pregnant. I was followed pretty closely. And it was when I was about 25 weeks, I think I had an ultrasound and they said everything is great. Come back in four weeks. We'll do another ultrasound. And the last week I was like, you know, something is like

Chelsea (15:43)
Yeah.

Michelle Choairy (16:09)
He's not really like I feel like there's this tightness. I don't really feel him that much But we were going in for an ultrasound and I said, okay. Well, let's just see how it goes I got there and I had no amniotic fluid. I had none they rushed me to the hospital did made it me to the hospital and They started pumping me IV and all kinds of stuff. They're like you got a drink

this much water, gallons and gallons and gallons of water a day just to see how long we can keep him in, because the longer he's in you, the better off he's gonna be. So we're talking to the neonatal care, because of course, he's probably most likely gonna be in the NICU, so we'll probably have to have these conversations.

But I was basically...

bed rest in the hospital for three weeks before I had him. and I know this is parenting and it's, you know, postpartum mental health and let's talk about that, right?

Chelsea (17:11)
Mm.

no, it's all about it. It's the whole speck. No, it is.

It's the whole spectrum. It's the whole experience. So that I mean, going through your first pregnancy to begin with is terrifying for anyone. to have it be so difficult and to go from everything's okay to everything's really not okay. Like that plays a huge, that plays a huge role in

in the rest of the journey. did he end up coming early?

Michelle Choairy (17:49)
So because I had low amino fluid, he would have decels in utero. So his heart would just drop very low. And then I would have a bunch of nurses running into the room, turn over, turn here, let's try to move him, let's try to do this. And it was like that for three weeks. was, my gosh, was, I mean, I literally did not leave the hospital for like...

almost a month. when he was about 32 weeks, he dipped so low that they said, the day. So they prepped me for a C-section. We went in and there was a humongous team in the in the room because he was they could tell that he was going to be very small. And

then you have, you know, they come and they talk to you, they have the conversation of, okay, well, he's probably gonna be in the NICU. Then, you know, there is a possibility that he might not be breathing, so we might have to help him breathe. And there's a possibility of all these, and they go through like the worst case scenarios with you. And you're like, okay, okay. And really, like, what can you do, right? You just go along with this, because there's nothing else you can do. You have...

Chelsea (19:09)
Yeah.

Michelle Choairy (19:13)
zero control over this. you know, we had a c-section and as soon as he came out and I heard his little voice crying, I said, ⁓ my gosh, he can breathe. I remember that coming into my mind. I was like, okay, he can breathe on his own because he's crying. So they grabbed him, they put him right here and he was three pounds.

Chelsea (19:25)
Yeah.

Michelle Choairy (19:36)
three pounds one ounce when he was born. they whisked him away because they needed to do all, you know, everything that they needed to do. ⁓ and then the next time I saw him, he was in the, know, what we like to call the incubator. It's an isolate is what they call it. And he was there for four weeks in the NICU.

Chelsea (19:52)
Yeah.

Michelle Choairy (20:00)
and for four weeks I would get up in the morning and I would go there, I would be there by 7 a.m. just so can hear when the doctors are coming by to do their spiel and then I would come home at seven o'clock at night when they kicked me out. and then.

Chelsea (19:59)
Yeah.

you spent a month

in there every moment.

Michelle Choairy (20:19)
Yes. And that's, you know, I look at the NICU nurses, right? They really taught me how to be a mom because I, mean, for a month, that's what you do. You go in there and they tell you, okay, it's time for him to eat. You can, you know, hold him now. And he couldn't, ⁓ breastfeed. And so I would pump.

Chelsea (20:20)
Yeah.

Mm-hmm.

Michelle Choairy (20:45)
and then they would feed him my milk because he had a tube for a little while. Because at 32 weeks, kids, babies don't suck, swallow, and breathe. I don't know if you knew that, but they can't eat on their own. And so we had to wait for him to get a little older. That's why basically the eating was the reason why he didn't come home until four weeks later.

Chelsea (21:00)
Yeah.

Michelle Choairy (21:12)
That was a hard time. That was a hard, hard time.

Chelsea (21:17)
it's a whirlwind into the start of your parenting journey. Like it, yeah, a whole lot of chaos, but you also had nothing to compare it to either. like, it just, right? Like listeners who are not seeing this, like the face is like, yeah, like,

Michelle Choairy (21:23)
Yes.

Yes.

Yes!

Chelsea (21:40)
So like some of these questions are going to seem like really silly questions, but for people who haven't experienced having a preterm birth or for having a baby in the NICU, like what were some of the things you think were the most helpful for you and what were some of the things that were definitely not helpful for you in terms of navigating that experience?

Michelle Choairy (22:05)
So I really appreciated those nurses in the NICU. The nurses and the people who work in the NICU, they're made differently. Because they're not just caring for the babies, they're caring for the moms. Because if you think about it, you just had a child, but you went home without your child.

Chelsea (22:19)
Yeah.

Mm-hmm.

Michelle Choairy (22:33)
you that's kind of the expectation when you have a baby is that you're going to have a baby and you're going to take your baby home with you. And then life starts and it's not really like that when you have a NICU baby. And he was so tiny. He was so tiny. So those nurses were like the most helpful people like ever. And then

Chelsea (22:48)
Yeah.

Michelle Choairy (22:59)
the nurses that were not, were not the That's right. But you know, I look back and really like I was surrounded by a really good team. It was, I had my baby in a really good hospital.

Chelsea (23:01)
Hahaha!

We all know those nurses too, all of us who have ever had a hospital experience.

Michelle Choairy (23:18)
And so I was very grateful for the opportunity that I had to have him there and not just anywhere. The not helpful things were, I don't know, probably...

I know, I really can't think of, like really people during that time, they come together for you. and my husband was working and that was hard. That was really hard because he had just started a job and so he couldn't take that time off to really be with me. we didn't think that this was gonna be happening so soon, right? We still had three months.

Chelsea (23:40)
Yeah.

Yeah.

Michelle Choairy (23:58)
plus to go and one thing that I did learn is do not move when you're pregnant because we moved and then a week like two weeks later I had my baby and I know two people that did the same thing they moved and then two weeks later they had their baby and they think that all of that just all that stress just cost them to come early I don't know but yeah it was it was a hard time

Chelsea (24:06)
Ha ha ha, yes!

Yeah.

Michelle Choairy (24:27)
And the things that, and really people come together, people come to see you, like your friends. and everybody wanted to meet my little Drake, you know? And it was, it was hard because a lot of them couldn't. It was because of the NICU. At least it wasn't during COVID, because I don't even know how people at that, during that time did it because.

Chelsea (24:43)
Mm-hmm.

Right.

Michelle Choairy (24:51)
You know, they probably only allowed one person at a time and how do you get the support from the outside world? I cannot even imagine so but anyway That's a whole other conversation to have

Chelsea (25:00)
Yeah,

I've talked to a lot of COVID mamas and mamas who had NICU babies during COVID times. All of the things that are challenging just get amplified, but that's what COVID did to everything.

Michelle Choairy (25:20)
Mm-hmm. Yeah.

Chelsea (25:21)
Yeah, but

I'm so happy to hear that you had a good support system around you. And yes, it was challenging because your husband was working. Were you able to sort of feel like, obviously, this is not a time where you're your best self and you're able to do all of your like best self care. But did you feel supported enough that you were able to

Michelle Choairy (25:43)
Mm-mm.

Chelsea (25:47)
like stay grounded and be present during that time?

Michelle Choairy (25:50)
I mean, I have to be for my son, right? Like, I'm the kind of person that...

Chelsea (25:52)
Yeah.

Michelle Choairy (25:56)
If I have a reason, I will focus on that reason. Like the anxiety in me, like my son is my priority. I'm not the priority right now. And so I had that. So I was grounded because of him. But I mean, I would come home and I didn't have him and I would fall apart at night, you know?

Chelsea (25:59)
Mm-hmm.

Yeah.

Michelle Choairy (26:21)
then you start talking about postpartum depression and having a baby in the NICU is like compounds that right and I already had depression before

I was actually doing pretty well. I don't think that I was on any kind of antidepressants before I had my kid. But I had to go on them because I was depressed. I was. And it was pretty bad. Even after we brought him home, I took a total of four months off because one month I was in the hospital and then a month for him in the NICU and then two months at home.

Chelsea (26:45)
Mm-hmm.

Michelle Choairy (27:04)
And we, was lucky that I was able to do that in the state of California. it was tough. I said, all I did was cry. And so, I mean, I had to, they were like, here, you have to take this because if not, you're gonna fall apart.

Chelsea (27:04)
Mm-hmm.

Mm.

Michelle Choairy (27:25)
and I'm not anti and so I was like okay let's do it let's do it so

Chelsea (27:30)
Yeah. And that,

and you found that helpful?

Michelle Choairy (27:34)
it was helpful to me. don't know, I know that for, you know, there are a lot of people out there that are against this, but for me...

Chelsea (27:36)
Yes.

Michelle Choairy (27:44)
I had to, because I was really falling apart, especially when I came home, because I was home by myself all day. And in the NICU, at least you had people to talk to, you had the nurses there. But once you come home and you're home by yourself with your child all day long, and you can't really have people come.

Chelsea (27:46)
Yeah, absolutely.

Mm-hmm.

Michelle Choairy (28:08)
see him because if they bring anything he's so tiny so we had all of those things all these things all at the same time so being alone it was just it was awful but like i said you know getting the help and and looking for that was what helped me for sure

Chelsea (28:32)
And the only reason that I ask is, and you said it beautifully, like for some people it works and for other people that's not their journey. And that's kind of like the whole premise of Quiet Connection is that everybody's journey is unique, but we all sort of share this common thread of like, we all have been through something. And the reason that I asked if it was helpful for you is because...

Especially with you saying that you had a previous history of mental health like you had the foresight to know like okay what I'm feeling right now this isn't me and Whatever it looks like I need help so that I can get back to me and that's powerful. That's very powerful and like again like we talk a lot about community and we talk a lot about the village and it sounds like

you had a really, really good community around you, which makes a huge difference.

Michelle Choairy (29:27)
The interesting thing is that we did and but it wasn't it wasn't consistent because my family was in Brazil. His family was in Las Vegas. And so would go through lull times, right? Especially during the week and that is when my depression would kick in.

Chelsea (29:38)
right.

Michelle Choairy (29:51)
and knowing that he was so little and knowing that we couldn't really take him out in the world very often like you know it was it was hard and then I look at the difference that it was when I had my daughter who was she was 37 weeks but she was full term she you know she she was fine and we I mean the time that I had off we were traveling we were going to different places

Places

like it was so different than than the other pregnancy you can tell the difference there because preemie versus a full-term baby It was it was great to see the difference and see that it wasn't Just me that I I didn't do that. It just kind of happens, you know,

Chelsea (30:42)
Well, and that leads kind of wonderfully into, like, I feel like I'm jumping ahead a little bit.

when did you guys sort of discover I mean, obviously you had a preemie and obviously you guys discussed that there may be...

some different types of complications medically and developmentally. When was the turning point for you guys when you realized like this is maybe more than just preemie development?

Michelle Choairy (31:10)
So.

Because he was a preemie, the hospital follows the children that were in the NICU. So they followed them for like one to two years. And so I remember taking him in and them saying, well, he's delayed, he's behind. And then every time we would go, he would be even a little bit more behind. And then it got to a point where, and they looked at us and they said, there's a question here.

for autism. so, and that's kind of when we started, okay, going down the rabbit hole.

Chelsea (31:43)
Mm.

Michelle Choairy (31:49)
He doesn't eat very well. He doesn't have the grips that he needed to have. His milestones were not being really met. But the eating was what I had the most problem with. So I found an occupational therapist that was like, okay, you need help from the regional center, which is the state-funded program in California. So if you have a child who needs any kind of help,

therapies or any kind of assistance in that way. go, under three is the regional center. Once you turn three, you go into the school district and we were at the under three. We started ABA as soon as that started.

Chelsea (32:27)
Mm-hmm.

Michelle Choairy (32:34)
And then we did occupational therapy and then we did speech therapy because he was behind on the When he turned three, I could tell that his speech was, I mean, he couldn't say mama, he couldn't say dada. He grunted and he was a social, very social little boy, but he would grunt. That's all he could do. And so...

I started searching, there was a question for what's called childhood apraxia of speech. I found, one of my friends was a speech therapist and she said, Nancy Kaufman, who is like the guru of childhood apraxia of speech, you should send her a video of your son.

And I sent it to her and she calls me the next day. And she goes, Michelle, I cannot help your son. Like he has no sounds. And so I gotta send you to a friend of mine who is in Connecticut. And so I had just had my daughter, my husband and I, we got on a flight and we went to Connecticut and we took him there to meet the speech therapist and...

We left my four-month-old daughter behind with family and we went there. so that is when everything started turning for us. He had an issue. He's three years old. He can't talk. Something is going on. And then the question of, and I feel soon as a child can't talk, the first thing that everybody goes to is autism.

Chelsea (33:58)
Yeah.

Michelle Choairy (34:22)
in my heart, I didn't think that that's what it was because he was so social.

and we learned how to do all this other stuff, myofascial stuff and biting down and giving just special spoons that we needed to use for his feeding. And then the sensory processing stuff, we ended up seeing a...

an occupational therapist there and she did a whole thing with him and then we saw a physical therapist that did water therapy. So I came back and I'm like, okay, we need to find these people here. So we found a speech therapist that was, she literally was the most amazing person and we drove, my husband drove my son an hour and a half.

Chelsea (34:55)
Mmm.

Michelle Choairy (35:13)
every three times a week up to LA so we could see her. But she was a childhood apraxia of  speech trained speech therapist and she kind of just started finding us. Okay, so you need an occupational therapist and then we found this physical therapist that was a water therapist just right here right by our house and I was like, you've got to be kidding me. This is amazing. And he

Chelsea (35:17)
Wow.

Yeah.

Michelle Choairy (35:41)
That's how he learned to swim. anyway, going back to everything else, I feel like, you know, the journey started when he was three, but really, had I not looked for those things, had I not, had I just accepted the fact that this is it, he would have been, I mean, we wouldn't have found these, these interventions and we wouldn't, an early intervention is.

the most important thing you can do for a child that has any kind of problems or delays if you want to call.

Chelsea (36:20)
Yeah. know I told you I was going to jump around a little bit, but because you sort of talked about how this was all unfolding after you had just had your daughter, I'm going to like backtrack us a little so you're experiencing these things with your son. Did those experiences and your birth experience, did that impact your decisions at all to have another child or did it maybe make you think about

the experience a little differently?

Michelle Choairy (36:49)
So it's funny that you asked that because I remember, you know, through all this, we're like, okay, do we want to do this again? Like, how are we going to do this? Like, what if we have to do this all over again? And my husband was the one, he's like, you know what? He needs a buddy. He needs a friend. He needs a buddy.

Chelsea (37:05)
Mm-hmm.

Yeah.

Michelle Choairy (37:14)
And we're like, okay, so we, that's a whole other journey and probably a whole other episode that we can talk about. But, you know, we, we had a miscarriage and we decided, I went to a specialist and he said one out of nine of your eggs is good. I was already 41 and I'm like, okay, so what do we?

Chelsea (37:23)
Yeah

Mm.

Michelle Choairy (37:43)
do. anyway, we were going to start the process of IVF on a Monday on Sunday, I found out I was pregnant. So and then we had my daughter. just that whole process, right? I mean, it never ends, it felt like. But it was I look at them now and it's a love hate relationship.

Chelsea (37:54)
my gosh.

Yeah.

Michelle Choairy (38:09)
because they're brother and sister. But, know, it's one minute, I hate you, screaming, get out of my room, don't play with my toys. And then they're just come here, you'll be my prince. I'm going to be a princess. And he plays along so well. so like, you know, like I said, it's the love hate relationship. But she...

Chelsea (38:11)
Yes!

Michelle Choairy (38:35)
stands up for him. Like, he, she is like his protector in a way. And he protects her too, but I think it's more the other way around because, you know, he has that delay and he has the developmental delay and things like that. there, I mean, I'm so grateful that we brought her into this world, but making that decision was not an easy decision, especially for me, because I was like,

It was such an awful experience being pregnant and her pregnancy wasn't great either. But at least we didn't have a NICU baby. at least that.

Chelsea (39:13)
Mm. Yeah, I mean, you had a

you had you got to experience a different birth experience and and yeah, and we say like every pregnancy is different and every birth is different and yeah, I I was gonna say like, I'm glad you got to experience a different birth experience, but that's not even what I mean. Like, it's just

It's interesting to hear you reflect on the differences between the two and it illustrates that every experience is unique. Even from one pregnancy to the next. So now I'm jumping around again,

So you knew in your gut, in your mama gut, that this was not ASD, this was not autism. What was the journey like for you in getting to his ultimate diagnosis, which is it's TBR1, correct? Okay.

Michelle Choairy (40:03)
That's right. So the journey was long and it was, it was hard because everybody was just like, you're just not accepting it. You're just not accepting the diagnosis. And it's actually interesting because up until he was about, I don't know.

or five, everybody was just, ⁓ he's going to outgrow it. Everything's going to be fine. You you get all those things from people outside, right? ⁓ so and so didn't speak until they were five. So don't worry about it. Don't worry about it so much. And if you go along with that, I'm sorry, just don't, don't go along with that because early intervention, like I said, is the most important thing that you can do for your developmentally delayed child.

Chelsea (40:27)
Mmm.

Yeah.

Michelle Choairy (40:51)
I just, there was something with me and my husband, we're like, you know, he's too social for this. He wants that interaction. It's not like he's pulling away. And so the first diagnosis we had was childhood apraxia of speech, and then you get sensory processing disorder, and you get all these things. And when you put it all together, like that is like what it looks like on paper, but it just didn't fit.

Chelsea (41:16)
Mm-hmm.

Michelle Choairy (41:17)
I fought this. really did. And I am glad that I did because had I just said, okay, we would have never had a genetic testing done about three years ago to find out that it is not, it's, it's a genetic disorder that causes autistic traits, not necessarily autism. And so he does not have an autism diagnosis. And I feel like, you know,

Chelsea (41:38)
⁓ huh.

Michelle Choairy (41:46)
had I not pushed, had I not stood up for it. And it's not that I didn't want, that I didn't accept the autism diagnosis. It's just that in my heart, I knew that that's what it wasn't that. And so we did, I mean, we looked for, I went everywhere. So one of the things that I teach my parents that I've been working with is you got to have a team around you, right?

a medical team that's around your child. And wasn't until I got a full team around him that somebody said, you know what, let's do a genetic test. Let's go that route. But we had to, like we had to go, like we had to do an EEG. We had to do, like, I mean, it was, we had to go through so many hoops to be able to get to, okay, let's do this,

sequence genome testing and we and then honestly like when I got the call from the geneticist I was like okay it's negative right because everything else was negative. I'm like I was just expecting negative and they're like actually it was positive and we found that he's a de novo which is you and your husband you guys don't have it.

Chelsea (42:43)
Yeah.

Right.

Michelle Choairy (43:09)
he does. He has the TBR1 and then they showed me and it was one little letter that switched in his little DNA and I was like okay I did it all of this up until that point I had been blaming myself for whatever I ate too much Taco Bell I drank too much Dr. Pepper I didn't

Chelsea (43:17)
Mm.

Michelle Choairy (43:38)
count the kicks, right? And all of that, I'm like, I did this, right? That guilt, and then when I heard that, it was like, okay, it wasn't me. It was when he was made, the DNA wanted to switch that little letter for him. And that's what it was. And so

At the time, he was like, there were about 60 kids, 60 people in the world with TBR1. Now we have about 200 in the world and we're from all over the world. And they really truly think that this is an underdiagnosed disorder because if you had genetic testing done before 2021 or 2022,

It wasn't, you couldn't test for it. So they think it's underdiagnosed.

Chelsea (44:33)
Yeah, I'm looking like I

I did my research. don't I don't research the people that I am going to meet because I want to authentically experience your story. my little special educator brain was like, ⁓ my goodness, TBR one, I've never heard of that. Like and and being in intensive needs. There's a lot of things that I have heard of the other people.

may not, they don't come up in a typical like, special ed or developmental delay conversation. So it's like, I haven't heard about that one. And I looked it up. And it was like only in 2020. yeah, in 2020, 40 people had been identified. And I was like, ⁓ my gosh. And when I was looking into it more, like you could obviously speak on this, but like,

Michelle Choairy (45:16)
Mm-hmm.

Chelsea (45:23)
I can understand how it could be under diagnosed because so many of the symptoms mimic other Like you were talking about like the autistic traits and then there are also like, you can have seizure activity and you can have like, right, like and feeding difficulties and head circumference, like a smaller head circumference. like all of these things.

Michelle Choairy (45:35)
Yes.

Yes.

Chelsea (45:45)
And it's like when they tell you what is that thing? What is that medical term? Like when you hear hoofbeats, think you don't think zebras, you think horses or whatever. But like in this case, the hoofbeats are coming from every direction. And it's like, what the heck? So that must have felt so validating to you. I would assume to hear like my mom instincts were right on this.

Michelle Choairy (45:56)
Ha ha ha ha.

Yes. And it... Mm-hmm.

Yes. And also, like I said, was that letting go of that guilt that I had carried on for so long and knowing that it wasn't me. I think that that was the biggest thing. was, you know, understanding, having that understanding that it wasn't.

Chelsea (46:14)
Yeah.

Michelle Choairy (46:37)
At the same time, you go research and there is one paper or there's, you know, like two people in the world talking about this and they go, there's nothing we can do about it. You treat the symptoms. Did I do, did we do anything different from when we didn't know his diagnosis to what we do now have? The only difference is that

Chelsea (46:42)
Yeah.

Michelle Choairy (47:06)
we're actually able to get more services through the state because of that. And my kids are awake and so I can guarantee you that one is gonna, I can hear mom coming from there and it's him. So hopefully they will not barge in. But he, know, and you just don't know.

Chelsea (47:20)
It's okay. It's okay. It's okay.

Michelle Choairy (47:27)
what is going to bring and nothing changed. Nothing changed. He's still in speech therapy. He's still in occupational therapy at school. He's in fifth grade, but he can't read and he can't write. So he's still developmentally delayed. And so we're trying to give him the tools to have the best life that he can have now.

And of course, we're still going to keep trying to get him to read and write because this is an important thing. But he's 10 and he's not doing it. Like he's just now getting a little bit of inquiring mind about reading books and he wants to, you know, he wants to go to the bookstore and he wants to buy different books. And he's really, really into the wild robot right now. And so. Yes.

Chelsea (48:18)
So is my daughter. My daughter is too.

Yes.

Michelle Choairy (48:22)
It's great. It's great. And so I mean, and like I said, nothing changed. We didn't do anything different, but we know what it is. And there's an awareness that needs to be brought into this world. look at the, I was watching this thing the other day, the under the undiagnosed and all these kids and all these people in the world that really, they don't even have a diagnosis, but

Chelsea (48:33)
Mm-hmm.

Michelle Choairy (48:50)
Everybody knows that there's something so they have multiple diagnosis, but not really what is causing all of these diagnosis and We were the lucky ones to be able to find this so

Chelsea (48:53)
Mm-hmm.

Yeah. Well, and I think for some people, there's really a wide range of, just like anything in life, of

families and their relationships with diagnoses. And for some people, that's not an important thing. The label isn't what's important. And for some people, it is very, important. It sounds like, if I'm interpreting your experience correctly, is the validation of having the diagnosis was, one, for you, you were able to sort of breathe this sigh of relief in terms of knowing.

in the same breath, your son didn't change. He was still your son. He was still the same child he was five minutes before you received that diagnosis. But now you have a name for it. You can recognize other people who are going through a similar situation and create community in that sense. And moving forward, you're able to hone it. mean, not maybe not you personally.

But the community that you find yourself in is able to hone in their resources on learning more about it. And maybe in the future, being able, like when you say like, well, you just treat the symptoms, maybe one day it'll be something different. Like they'll make a breakthrough or like honoring the journey that for some people, the label isn't a big deal, but I love the sort of,

balance you have between like, he's still my son. He's the same person that he was before. And we're, we're going through this journey and the way that we're going through this, but having this diagnosis gave it a name and gave us, gave us sort of like a path forward. Am I interpreting that correctly? Yeah. Okay.

Michelle Choairy (50:56)
sure for sure ⁓ my gosh perfectly because yes like

I and and here's the thing too is like as you were talking I started thinking about my sister-in-law and how like you know just in the family in general it was like just just take the ASD diagnosis just take the autism diagnosis you're gonna get more services you're gonna

all these things and I mean but it wasn't that and I knew it in my heart that it wasn't it but then like there was that thing of you're crazy like you you're searching for something that it's not there and I think that that's kind of what a lot of people were coming to me about and once we got this diagnosis it was like

Chelsea (51:37)
Mmm.

Michelle Choairy (51:49)
their words it was well we can have there's there's this feeling of acceptance that there's a reason why he is the way he is and there's a reason why and and we can it's not an acceptance it's like okay I can understand why he does the things that he does and so

Chelsea (52:03)
Yeah.

Mm-hmm.

Michelle Choairy (52:16)
I feel like that was a little bit better There was a reason behind it.

And they understand better and accepting that this is not something that it's not me, it's not my husband, it's not the way that we parent. It was just something that it was, that it was. There's a diagnosis there. So to me, that was very important too, for other people to understand and have that understanding of who he is and why.

Chelsea (52:34)
Mm-hmm.

Yeah.

Yeah, absolutely. That much sense. we've talked a lot about your son,

and your experience of your son's developmental My question for you would be, and you sort of alluded to this earlier, when you said, well, I just had to do it. I just had to do it if I had to do it for my son. Were you able, and are you able, to still recognize and meet your own needs?

throughout this journey. For any parent out there who's who may be newly into this,

Michelle Choairy (53:31)
Honestly, I think that in the beginning we are so lost and this is where I've really changed my who I am in the last few months because This is exactly what I'm trying to do is to help those parents that are just in the beginning of this whole process Right. They know that there's something wrong. You're thinking that you're a bad parent.

Chelsea (53:55)
Mm-hmm.

Michelle Choairy (53:59)
you know, you're trying to figure out like, or you just got the diagnosis and you don't know where to go and what to do and what are the expectations, what are the services I can get? And so that is when you're going through that, you're not thinking about yourself. You're not. And it's so easy to forget. It's so easy to forget. And

Chelsea (54:20)
Mm-mm.

Michelle Choairy (54:25)
For me, I finally made the change that I'm gonna use this for good and I'm gonna try to help other parents. So this is giving me something to look forward to. But for the parents that are just starting, the biggest thing I say is you have to take care of yourself. And if you don't, it's gonna be a tough time. It's gonna be a tough road.

Just remember that if you're not well, your child won't be well. And I've gone through that over and over and over and over again. And unless you are well, they will not be well.

Chelsea (55:07)
And you're worthy of just as much care as you are giving to your child. That.

is a message that is beautiful and it was going to be my next question. It was going to be like, what would your message be to these new people? So I'm going to flip it a little bit. So what I typically do with my episodes is I usually end on one of two questions and I wait until we've reached a point where I feel like, huh, like I feel like we're at that sigh point. And then I decide.

because you already answered one of them, I'm gonna switch so my question will be if you could go back in time to the Michelle before you even like before you were pregnant the first time before any of this, and you could instill something within yourself that would carry you through this journey.

Michelle Choairy (55:43)
Hahaha

Chelsea (56:05)
So you can't tell yourself what's gonna happen. You can't tell yourself you're gonna wind up in the hospital for three weeks. You can't tell yourself you're gonna have a NICU baby, any of that stuff. But you could instill something within yourself to get you through. What would you instill?

Michelle Choairy (56:20)
Patience. Patience, my friend. Patience. Because that's all I could think about in my head when you were asking. I wanted to just scream it. Because I want to get everything done right then and there.

Chelsea (56:21)
Patience. Yes.

Yes,

I think that that is and authentic and I love it. Something that I need to learn. again, like I, this is another one of those conversations where I feel like I could just talk to you forever, but I'm respecting you and respecting your time. So I just, I just want to say, like, thank you for sharing this part of your story with me.

you for advocating for not only your family and your son's needs, but for other families who are going through something similar. And I hope that my listeners, especially listeners who are going through something similar in terms of whether it be having a baby in the NICU, whether it be having a child with some sort of developmental or intellectual disability, like understanding

They're not alone. I mean, that's my tagline. Like, you're not alone, I see you. But like, when I think about it, yeah, just the thing that you're exuding so much of is like, you're not alone. And you don't have to be alone. You don't have to be alone in this. So yeah, thank you for, for letting us glimpse this, this part of your life and for all the work that you're doing.

Michelle Choairy (57:33)
Mm-hmm.

Well, thanks for having me and letting me tell my story because I really hope that this touches somebody and that somebody will understand that exactly that you're not alone. You're not the only one going through this. Build a village around you because you need that village and

Thank you for having me on this and letting me talk about it because it is so important to me. So I appreciate you having me.

Chelsea (58:17)
Yes!

Chelsea (58:23)
Thank you, Michelle, for sharing your story with me and for the dedication you have to advocate for your family and others in similar situations, as well as helping to amplify the message that you are never alone. To learn more about Michelle and TBR1, visit wisdom4complexkids.com, that's the number four, or check out Michelle's social media accounts that are linked in the show notes.

You can keep up with us on Quiet Connection by following us on Facebook, Instagram, TikTok, and threads at Quiet Connection Podcast. You can help our community grow by leaving us a rating and review on Apple podcasts or Spotify, and consider sharing our episodes on social media. To share your personal journey, you can contact us through our website at quietconnectionpodcast.com or by email at quietconnection.

Join us next time when another story is told and you realize you are not alone. I see you.