September 21, 2025 • 31 mins
Michelle Choairy Wednesday, September 3, 2025
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On A Winning Heart today (Wednesday, September 3, 2025), Best-Selling Author, Win C welcomes Michelle Choairy. Michelle is a passionate advocate, speaker, and mentor dedicated to empowering parents of neurodivergent and complex kids. She is the founder of Wisdom 4 Complex Kids and creator of the THRIVE Framework, helping families navigate IEPs, medical systems, and advocacy with confidence. A proud mom to a child with a rare genetic disorder, Michelle brings both lived experience and professional insight to her work. She is the host of the Complex Kids, Simple Solutions podcast and co-host of The Mom Panel Podcast, where she shares tools, stories, and hope to help families thrive one step at a time. To learn more about Michelle visit https://michellechoairy.com/
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:02):
Welcome to a winning hunt, you guys.
Today I'm honored to haveMichelle with me, and I'm gonna
let Michelle take it away andshare a story, and then we're
going to see how this interviewnaturally rolls, and then we'll
just have fun with it.
(00:23):
So welcome, michelle.
Speaker 2 (00:26):
I love it.
Thank you, wyn.
Yeah, thank you for having me.
I'm excited to see how thisgoes, but my name is Michelle
Shoaiti and I am a mom of what Ilike to call a complex kid.
My son is 11 years old andabout three years ago we found
(00:48):
out that he has a rare, veryrare genetic disorder called
TBR1.
And he is one out of about 200in the world right now, but he's
the only one with the variantthat he has, and so he's when
you say one in the world, that'smy son.
Yeah, yes, and so you know.
(01:13):
Throughout the years, we've hadso many things happen.
We started out, you know, withone diagnosis, and then it's
developed into like 10, you knowdifferent diagnosis, and then
it's developed into like 10, youknow different diagnosis.
And then, about three years ago, was when we did the genetic
testing and we came back and wefigured out what it was causing
(01:35):
all of the 10 differentdiagnosis that we had.
Speaker 1 (01:39):
Now, are you or your husband a genetic carrier for
this disease?
Speaker 2 (01:47):
We are not.
So it's a de novo, is what theycall, and so we don't carry it.
My daughter doesn't have it.
We don't know about thegrandparents.
We haven't really tested them.
My parents are deceased so wewouldn't be able to test them.
But we don't know.
(02:09):
Usually they just call it a denovo, because it came and it was
just when he was formed.
And it's interesting becauseDrake just had one little letter
that inverted and so it.
Some people have a wholedeletion of the gene, some
(02:29):
people have partial deletionsand his was just one little
inverted letter and it hascaused all of these complexities
in his life.
But you know he, we love him.
He has.
He has his complexities but hehas his amazing abilities and he
(02:51):
has his moments, like we all docorrect.
Speaker 1 (02:55):
Yes, especially cerebral palsy.
Speaker 2 (02:58):
Yes, trust me, you guys, I have at my moment oh my
gosh, when I can only imaginethem yeah yeah, but you guys
love kids just the way they areyes, yes, and I tell everybody
you know, in, in the things thathe lacks right, he makes up in
other ways, like he is the mostsensitive kiddo you'll ever like
(03:23):
.
If you are crying, he will crywith you.
He can feel that like people'sresponses so, so deeply and like
that is like his best, best,best quality that we have, you
know, and he's just when hewants be sweet, when he's not
(03:44):
having his days and his moments.
He is just amazing and we lovehim so much.
Speaker 1 (03:50):
Now, what would be your advice for the new mom or
the new brother or the newsister with a medically complex
kid, or the new sister with amedically complex kid.
Speaker 2 (04:05):
So, you know, the first thing is for me is that it
is hard, it's hard right,having these complexities,
having these, you know,disabilities and whatever you
want to call them.
I like to call themcomplexities because I don't
(04:25):
look at it as a disability a lotof times, and so it's like to
me it's.
You know, we have complexthings that happen in our lives
and and that's how it is.
But when you have thesecomplexities in your life and
you have these, you know, quoteunquote issues you have to have
a positive attitude about it.
And so I, about two years ago, Istarted a business and it's
(04:52):
called Wisdom for Complex Kids,and we do, I actually help
parents that are going throughthis, and so we, you know I
developed this, this wholeprocess on how to do this, how
to get through this and becomeyour child's advocate.
But I think that the biggestthing that I have to say to the
(05:17):
parents that are going throughthis is that you have to
celebrate the small wins, andthis is valid for everybody,
because if you don't celebratethose small wins, it's so easy
to look at the bad and whatthey're doing wrong and what's
(05:38):
lacking, what they're not doing,what they're doing and you
forget to look at those smalllittle things and I was gonna
say, to give you guys likeexample of the small little wins
, having a kid put a dish in thesink, that's a small little win
(06:00):
, like they're still repeatingit a million times when they
finally get it.
Speaker 1 (06:07):
So you're right, you have to celebrate the small
little wind to counteract.
Oh my God, what am I going todo?
Speaker 2 (06:19):
Yes, I mean, it is already hard, right, it's hard
on parents, it's hard on thebrothers and sisters, it's hard
on the extended family uncles,aunts, grandparents, you know.
Speaker 1 (06:33):
It's hard on everybody.
Speaker 2 (06:37):
But you have to look at the good things, you have to
look at the wins, because if not, you will drown in the bad, you
will drown in the.
Speaker 1 (06:48):
And that's not okay, no, that's not okay to drown in
the bad.
And what drives me nuts is whenpeople say, oh, I have a
disability so I can't doanything.
I'm like no, I have adisability so I can't do
anything.
Like, no, you can.
(07:08):
You may need help doing it, butyou can do it.
Speaker 2 (07:13):
That's right, that's right, and I think that for the
parents to, especially when youhave a little child, right?
This is what I think, a lot,because this is where I am right
.
I'm the parent, I'm not theperson, I'm not my son, but for
the parent, if the parent, ifthe mom, if the dad, if you're
not well, your child especiallythe little ones they're not
(07:35):
going to be well either, and soyou have to master the small
wins and not allow yourself todig that hole, because if you're
depressed, can you imaginewho's going to take care of your
child, who's going to help them?
Speaker 1 (07:52):
Right now.
Speaker 2 (07:53):
So you have to, you have to figure it out, you have
to be positive and you have tocount the small wins.
Speaker 1 (08:01):
Yeah.
So I have a question for you ifmoney were no objects, what
would you be doing?
Speaker 2 (08:51):
um, I don't know that I would do much different than
what I'm doing.
Maybe I would probably maybelook into like a different
school, but I have been lookingand I haven't really found a
school that really, um wouldchange much of the outcome with
him.
But I think that in and it'snot just about him I think that
(09:14):
if I had enough money I wouldprobably I'm thinking big here
when I'm thinking big here, andyou know but I think that I
would help the TPR onefoundation to start looking for
some kind of treatment, cause Ithink that there are a lot of
(09:34):
genetic treatments that they'reputting out there and they're
coming out with, and I thinkthat's you know, the way things
are in the world today.
Hopefully soon there issomething that's going to be
coming up, and I don't even knowif it would make a difference
for my son to have this, butsince they're catching these
(09:55):
genetic disorders so muchearlier in life, maybe it would
make a difference, right for theyounger kids.
So I'm thinking big and that'swhat I can think big of on.
Speaker 1 (10:06):
So on a typical day.
What does it look like for yourson?
Speaker 2 (10:15):
So he is very like, high functioning, so, but he
does have a speech disorder, sopeople don't quite understand
him 100%.
I even sometimes I have to havehim repeat himself a couple of
times, yeah.
But so he wakes up in themorning and I have to tell you
(10:35):
this this is a really cute storyand it just happened yesterday.
And so today, yesterday, I I'msleeping and then I wake up and
he's right next to me and hegoes mama, I got myself a donut.
And I was like what, how didyou do that?
He jumped on his scooter and,rate, like, went down to the
(11:01):
donut store which we have neverdone on a scooter before or on
his bike, and he just jumped onhis scooter, took the dollar
that he had in his room, wentdown to the donut store, came
back with the donut and he wasso proud that he did it by
himself, right.
So this just started yesterdayand he did it again today and he
(11:22):
actually took his sister withhim.
But you know, this just startedhappening today.
But then you know, after that,like, we usually get him ready
to go to school, and he does goto what we call here in
California a non-public school,so they are out of district.
Placement is basically where heis and it's a 45-minute drive.
Speaker 1 (11:49):
And he does not like that.
Speaker 2 (11:51):
Yeah, he does not like that, so he goes.
He goes on his ride for 45minutes.
He goes to school until aboutthree o'clock.
After that we have differentactivities for him.
Usually he has speech twice aweek.
He has swimming, which isphysical therapy, because it's a
physical therapist who does theswimming and he does special
(12:15):
needs soccer league with hisfriends.
Speaker 1 (12:18):
I love it.
Speaker 2 (12:19):
We try to keep him busy and try to keep him from
getting into trouble.
Speaker 1 (12:23):
I guess is more of my opinion, yeah yeah, translation
.
You need to keep all kids,especially the ones with
disabilities, busy so we don'tget into trouble.
That's right, we don't get intotrouble.
I could easily get into troublemyself, yeah, yeah.
(12:45):
So what is your biggest dream?
I mean what when you think big?
What is your biggest dream foryour future and the future of
your son?
Speaker 2 (13:05):
Well, of course, for me, it's for him to have an
independent life.
Speaker 1 (13:10):
Right.
Speaker 2 (13:11):
And because it's such a rare disorder, such a rare
genetic disorder.
You know, there's only a few ofthem that are a little bit
older.
I think there's a 24 year old,but she is you know.
And then there's like a coupleof them they're a little bit
(13:31):
older, but it's hard to saybecause the variants are
different, the it's.
It's really truly I hate thisword, I absolutely hate this
word but it's kind of.
It's a spectrum.
You have to look at the spectrumand we don't know.
We don't know how he's gonnaend up.
We don't know.
And you know, it's scary tothink that you know the he has a
50 chance that if he does havea child in the future, that the
(13:56):
child will have the samedisorder, and so those are all
things that a mother of an 11year old should not be thinking
about, but that we do thinkabout.
Yeah, right, but of course,like, I think that the biggest
dream is for him to be happy,for him to have an independent
life, and really it's happiness.
(14:17):
That's what I want him to be.
I want him to be happy.
Speaker 1 (14:21):
Yeah, we all want humans to be happy.
We can't be moping around justbecause of our disability.
No, and as we wrap thisinterview up, I know you have
questions for me.
Speaker 2 (14:38):
Yes.
So I would love to know how youstarted all of this, what
you're doing right now, because,honestly, this is already hard
as it is for me who I'm justbarely starting with my business
.
You know, advocating and doingthe things that I'm doing, but
(15:01):
look at you like how did youstart this?
What?
How did it come up?
Speaker 1 (15:07):
I started it because, unfortunately, I lost my mom in
2010, and I had to do somethingbecause she was my best
advocate.
So I had to do something inhonor of her and this is how I
(15:33):
started this then project.
I was going to do this as aside project and keep my other
company going selling artwork,but this turned into my job, and
writing books turned into myjob, and this is stuck.
(15:53):
Books turned into my job andthis is stuck.
I mean, I wanted to do this forthe parents who have newly
diagnosed kids and they're stuckin the hospital.
I mean, my mom didn't haveanything.
I was born in 87, so no Google,no podcast, no, nothing, barely
(16:15):
a support group, and so no Zoomto do this either.
So she was finding outeverything on her own and at
points they said to her but whenin a home she'll never function
(16:35):
, my mom goes no, we'll take herhome, We'll love her the way
she is, We'll have her functionto the best of her abilities.
So this is why I started allthis.
I started all this because Ineeded to do something for the
(16:58):
parents that have nothing at thebeginning of their journey.
Speaker 2 (17:05):
It's so, it's so true , right, when, like we, for me,
like I'm lucky that I do haveinternet, that I have you know
where to go, look for this.
Like that we have Google Meetor Zoom or whatever it is that
you can talk to people allacross the world.
(17:27):
And you know, for the parentswho did this earlier in life,
like earlier in in in the years,I can only see that my.
So, just really quick, I have abrother who I he's in the
spectrum.
He, he has autism and he wasnever diagnosed because nobody
(17:48):
really knew what it was and sohe was just the little, not the
good kid at school, you know,for the longest time and my mom
really didn't know, like whereto go and search for it.
So, honestly, I commend you fordoing what you're doing Because
, really, this, this, I thinkthat you're helping a lot of
people and I appreciate whatyou're doing.
(18:12):
I really do.
Speaker 1 (18:14):
Well, thank you, because I try to help as many
people as I can.
I mean, I gave and I'm here inArizona, by the way.
I am here in Phoenix, arizona,and I gave a speech in June to
my church and one of the womencame up to me who saw me speak
(18:41):
and she goes what transportservice do you use?
Because I'm having problemswith my transport service, so
with my daughter's transportservice.
And I told her and we textedand I gave her the number.
Now she's happy as a clambecause she didn't have to look
(19:04):
under a rock to find newtransport service.
She reached out to me because Ihave done all this research.
Sometimes you have to lookunder rocks and ask for help and
(19:25):
people will say to me peoplewill at me for that one.
People will say to me well, youhave a disability, it's okay
for you to ask for help.
No, I have a disability but Iask for help.
But it's okay for anyone to askfor help.
Speaker 2 (19:45):
That's what makes the world go around, I think I
think everybody, and when youhave good people, people who are
truly trying to help, it reallybrings it together and we can
have a better world.
And you can help your friendsat church with what I'm doing
(20:17):
right now, that I can helppeople to by advocating, by
becoming the best advocate thatI can be for the children that
I'm helping, and so this allcome kind of goes around, right,
and I think that, um, you knowwhat?
What goes around, comes around,and I think that goes around,
(20:38):
comes around, and I think thatyou know the the better we are,
the better people that we are,the better people we're going to
attract into our lives andwe're going to be happier for
that exactly, exactly, and Iknow you had a question for me
about my IEP yes, do you want totalk about IEP?
Yeah, I love it.
So how so you did you go intothe school district in, like,
(21:05):
I'm assuming, when you werethree, correct?
Speaker 1 (21:07):
I was very fortunate.
I went into a private schooluntil eighth grade and then I
went to my local public school.
Speaker 2 (21:21):
Okay, and did you stay in the public school until
you did you graduate from school?
I graduated.
Speaker 1 (21:29):
I graduated from school, I had IEP.
For those of you that don'tknow what IEP is, it's an
individualized education planfor kids and adults.
Now for kids with disabilitiesand adults who are going back to
(21:52):
college.
Thank you very much.
So the college level hassomething similar to IEP.
Speaker 2 (22:04):
Yeah, it's a little harder in college, though, and I
mean it's great that you'redoing it, but you know an IEP
it's.
It is such a like there are somany different levels.
Good IEP is bad, IEP is who?
So your mom was with you untilhow old were you?
Speaker 1 (22:28):
and how I.
When she died, I was 23 andthen, unfortunately, I lost my
dad In 2019, so, but my mom wasmy biggest advocate.
Speaker 2 (22:45):
Yeah, yeah, you know how.
How are IEPs designed for kidswith CP, like with you?
Know it's so hard.
Because did you?
I know that things kind of getworse right as you get older
with your diagnosis, correct.
Speaker 1 (23:06):
Mine doesn't get worse.
Cerebral palsy is not aprogressive disease.
Mine is getting.
I am in this situation rightnow where I am trying to get it
(23:26):
better actually, but I mine, cpis not a progressive disease in
the brain.
Okay, okay so, but how I set upis let's say, you need extended
test time, they will put in whenneeds extended test time or
(23:49):
when needs stuff regular.
I am an auditory learner so Iknow the answer.
I can retain stuff like thisnote tomorrow, but I just have.
My comprehension of the book ishard because I have trouble
(24:11):
holding the books.
Speaker 2 (24:14):
So do you?
Did you listen?
Did you have a?
And I know that this was awhile ago because you were.
You know you were born in the80 little bit different.
Speaker 1 (24:23):
I learned how to speak out of the state of
Colorado.
I actually learned how to speakwith one of the top speech
(24:45):
pathologists in the country andwe were about to look into
assistive device.
But assistive devices back thenweren't iPads, they weren't
cell phones, they weren'tsmartphones, because they were
(25:09):
huge they were about the size ofa table.
Speaker 2 (25:10):
Yes, I remember those the size of a table.
Yes, I remember those days whenI remember them.
Yes.
Speaker 1 (25:15):
Yeah, yeah, they certainly weren't apps on the
iPad, my God.
Speaker 2 (25:21):
Yeah, you know it's crazy because, like how far
we've come right with technology.
Yeah come right with technologyand I.
So we keep looking intodifferent types, different ways
that my son can learn, and rightnow it's like it's a touch
screen computer.
It's you know, it's they.
The computer reads to you, youcan dictate it and it will type
(25:45):
it out for you it's I, you know.
It's amazing how you did thiswhen this didn't exist.
Speaker 1 (25:54):
Yeah yeah, and this is why I'm doing what I do now,
because I will teach peopleabout technology and I will
teach people about podcastingtoo.
Speaker 2 (26:10):
I love it.
I love it that you have yourown podcast and you reach a lot
of people too, so I really whatyou're doing is so good for
everybody, and that's why I wasso excited to come on and talk
to you.
Speaker 1 (26:29):
Well, I appreciate that.
And where can people find youif they want more information?
Speaker 2 (26:37):
so they can find me.
I'm on all social media.
Uh, it's michelle show.
It is c-h-o-a-i-r-y.
I know it's a hard one,michelle show, itcom.
And or they can look for wisdomnumber four, complex kidscom.
So it's wisdom number four,complex kidscom.
Speaker 1 (26:59):
And.
Speaker 2 (26:59):
I do.
I, I'm an advocate and I alsohelp I.
I've been in the health healthcare business for many, many
years, and so I started helpingsome of the families that I
advocate for with some insurancestuff, because, as you know,
insurances don't cover anything.
Speaker 1 (27:20):
No, they barely cover hospital, let alone assistive
device.
And I'm not kidding when I saythat.
Speaker 2 (27:29):
Yes.
So anyway, I started helpingthem.
So if you have anybody, anychildren, that you have an IEP
that you need help with, I'mdoing for your listeners.
I will give them a free IEPreview so we can look through it
and kind of give them an ideaof what it is that they need to
(27:52):
be doing and kind of, yeah andif you um, here's my suggestion
if you get confused with theIEPs, always bring a advocate
with you who can listen for you,because you get.
(28:13):
They always say bring someone tothe doctors, but I would say
bring someone extra to your IEPso you don't get confused yes,
and just so you know, soeverybody knows and this is
something that I didn't knowwhen I first started this you
can bring anybody that you wantto bring to an IEP.
(28:35):
If you just need a friend tocome with you to give you the
strength and so you're notscared, you can do that.
And so just don't let them pushyou around.
And there's a reason.
Advocates are out there andthere is a need, and, um, I
promise you that if you have anadvocate or somebody with you,
(28:56):
that your child's iep will be somuch better and they will get
so much better, uh, servicesthan you would without somebody.
Speaker 1 (29:07):
I have a story based upon an advocate.
I got pneumonia, as you guysall know.
I got rushed from the to thehospital with pneumonia and that
was a story in itself becauseright now I'm temporarily bed
(29:32):
bound.
But my point is I told the casemanager at the hospital to call
my medical liaison.
She comes in before calling mymedical liaison, wants to change
my plan completely.
And then I said call my medicalliaison, wants to change my
plan completely.
And then, um, I said call mymedical liaison and she goes
(29:57):
well, I can't find the number.
I said the number's on theboard right behind you.
She walked in with a totallydifferent attitude after talking
to my medical liaison and I'mlike I told you people that.
So my point is always alwayshave a pay, always have an
(30:21):
advocate if you can swing one,because the less you you can a
team, you and the advocate cando a team.
But it's more reassuring if youhave the advocate here with you
(30:43):
, just because the advocate maycatch something you didn't.
Speaker 2 (30:52):
For sure, yes, no doubt.
Speaker 1 (30:56):
And we'll have all Michelle's information in the
show notes.
And it was lovely talking toyou and I hope you guys enjoyed
another fabulous episode of theWinning Heart and we'll catch
you guys enjoyed anotherfabulous episode of the Winning
Heart and we'll catch you guysnext time.
Bye you guys, bye everyone.
Welcome to a winning hunt, you guys.
Today I'm honored to haveMichelle with me, and I'm gonna
let Michelle take it away andshare a story, and then we're
going to see how this interviewnaturally rolls, and then we'll
just have fun with it.
(00:23):
So welcome, michelle.
Speaker 2 (00:26):
I love it.
Thank you, wyn.
Yeah, thank you for having me.
I'm excited to see how thisgoes, but my name is Michelle
Shoaiti and I am a mom of what Ilike to call a complex kid.
My son is 11 years old andabout three years ago we found
(00:48):
out that he has a rare, veryrare genetic disorder called
TBR1.
And he is one out of about 200in the world right now, but he's
the only one with the variantthat he has, and so he's when
you say one in the world, that'smy son.
Yeah, yes, and so you know.
(01:13):
Throughout the years, we've hadso many things happen.
We started out, you know, withone diagnosis, and then it's
developed into like 10, you knowdifferent diagnosis, and then
it's developed into like 10, youknow different diagnosis.
And then, about three years ago, was when we did the genetic
testing and we came back and wefigured out what it was causing
(01:35):
all of the 10 differentdiagnosis that we had.
Speaker 1 (01:39):
Now, are you or your husband a genetic carrier for
this disease?
Speaker 2 (01:47):
We are not.
So it's a de novo, is what theycall, and so we don't carry it.
My daughter doesn't have it.
We don't know about thegrandparents.
We haven't really tested them.
My parents are deceased so wewouldn't be able to test them.
But we don't know.
(02:09):
Usually they just call it a denovo, because it came and it was
just when he was formed.
And it's interesting becauseDrake just had one little letter
that inverted and so it.
Some people have a wholedeletion of the gene, some
(02:29):
people have partial deletionsand his was just one little
inverted letter and it hascaused all of these complexities
in his life.
But you know he, we love him.
He has.
He has his complexities but hehas his amazing abilities and he
(02:51):
has his moments, like we all docorrect.
Speaker 1 (02:55):
Yes, especially cerebral palsy.
Speaker 2 (02:58):
Yes, trust me, you guys, I have at my moment oh my
gosh, when I can only imaginethem yeah yeah, but you guys
love kids just the way they areyes, yes, and I tell everybody
you know, in, in the things thathe lacks right, he makes up in
other ways, like he is the mostsensitive kiddo you'll ever like
(03:23):
.
If you are crying, he will crywith you.
He can feel that like people'sresponses so, so deeply and like
that is like his best, best,best quality that we have, you
know, and he's just when hewants be sweet, when he's not
(03:44):
having his days and his moments.
He is just amazing and we lovehim so much.
Speaker 1 (03:50):
Now, what would be your advice for the new mom or
the new brother or the newsister with a medically complex
kid, or the new sister with amedically complex kid.
Speaker 2 (04:05):
So, you know, the first thing is for me is that it
is hard, it's hard right,having these complexities,
having these, you know,disabilities and whatever you
want to call them.
I like to call themcomplexities because I don't
(04:25):
look at it as a disability a lotof times, and so it's like to
me it's.
You know, we have complexthings that happen in our lives
and and that's how it is.
But when you have thesecomplexities in your life and
you have these, you know, quoteunquote issues you have to have
a positive attitude about it.
And so I, about two years ago, Istarted a business and it's
(04:52):
called Wisdom for Complex Kids,and we do, I actually help
parents that are going throughthis, and so we, you know I
developed this, this wholeprocess on how to do this, how
to get through this and becomeyour child's advocate.
But I think that the biggestthing that I have to say to the
(05:17):
parents that are going throughthis is that you have to
celebrate the small wins, andthis is valid for everybody,
because if you don't celebratethose small wins, it's so easy
to look at the bad and whatthey're doing wrong and what's
(05:38):
lacking, what they're not doing,what they're doing and you
forget to look at those smalllittle things and I was gonna
say, to give you guys likeexample of the small little wins
, having a kid put a dish in thesink, that's a small little win
(06:00):
, like they're still repeatingit a million times when they
finally get it.
Speaker 1 (06:07):
So you're right, you have to celebrate the small
little wind to counteract.
Oh my God, what am I going todo?
Speaker 2 (06:19):
Yes, I mean, it is already hard, right, it's hard
on parents, it's hard on thebrothers and sisters, it's hard
on the extended family uncles,aunts, grandparents, you know.
Speaker 1 (06:33):
It's hard on everybody.
Speaker 2 (06:37):
But you have to look at the good things, you have to
look at the wins, because if not, you will drown in the bad, you
will drown in the.
Speaker 1 (06:48):
And that's not okay, no, that's not okay to drown in
the bad.
And what drives me nuts is whenpeople say, oh, I have a
disability so I can't doanything.
I'm like no, I have adisability so I can't do
anything.
Like, no, you can.
(07:08):
You may need help doing it, butyou can do it.
Speaker 2 (07:13):
That's right, that's right, and I think that for the
parents to, especially when youhave a little child, right?
This is what I think, a lot,because this is where I am right
.
I'm the parent, I'm not theperson, I'm not my son, but for
the parent, if the parent, ifthe mom, if the dad, if you're
not well, your child especiallythe little ones they're not
(07:35):
going to be well either, and soyou have to master the small
wins and not allow yourself todig that hole, because if you're
depressed, can you imaginewho's going to take care of your
child, who's going to help them?
Speaker 1 (07:52):
Right now.
Speaker 2 (07:53):
So you have to, you have to figure it out, you have
to be positive and you have tocount the small wins.
Speaker 1 (08:01):
Yeah.
So I have a question for you ifmoney were no objects, what
would you be doing?
Speaker 2 (08:51):
um, I don't know that I would do much different than
what I'm doing.
Maybe I would probably maybelook into like a different
school, but I have been lookingand I haven't really found a
school that really, um wouldchange much of the outcome with
him.
But I think that in and it'snot just about him I think that
(09:14):
if I had enough money I wouldprobably I'm thinking big here
when I'm thinking big here, andyou know but I think that I
would help the TPR onefoundation to start looking for
some kind of treatment, cause Ithink that there are a lot of
(09:34):
genetic treatments that they'reputting out there and they're
coming out with, and I thinkthat's you know, the way things
are in the world today.
Hopefully soon there issomething that's going to be
coming up, and I don't even knowif it would make a difference
for my son to have this, butsince they're catching these
(09:55):
genetic disorders so muchearlier in life, maybe it would
make a difference, right for theyounger kids.
So I'm thinking big and that'swhat I can think big of on.
Speaker 1 (10:06):
So on a typical day.
What does it look like for yourson?
Speaker 2 (10:15):
So he is very like, high functioning, so, but he
does have a speech disorder, sopeople don't quite understand
him 100%.
I even sometimes I have to havehim repeat himself a couple of
times, yeah.
But so he wakes up in themorning and I have to tell you
(10:35):
this this is a really cute storyand it just happened yesterday.
And so today, yesterday, I I'msleeping and then I wake up and
he's right next to me and hegoes mama, I got myself a donut.
And I was like what, how didyou do that?
He jumped on his scooter and,rate, like, went down to the
(11:01):
donut store which we have neverdone on a scooter before or on
his bike, and he just jumped onhis scooter, took the dollar
that he had in his room, wentdown to the donut store, came
back with the donut and he wasso proud that he did it by
himself, right.
So this just started yesterdayand he did it again today and he
(11:22):
actually took his sister withhim.
But you know, this just startedhappening today.
But then you know, after that,like, we usually get him ready
to go to school, and he does goto what we call here in
California a non-public school,so they are out of district.
Placement is basically where heis and it's a 45-minute drive.
Speaker 1 (11:49):
And he does not like that.
Speaker 2 (11:51):
Yeah, he does not like that, so he goes.
He goes on his ride for 45minutes.
He goes to school until aboutthree o'clock.
After that we have differentactivities for him.
Usually he has speech twice aweek.
He has swimming, which isphysical therapy, because it's a
physical therapist who does theswimming and he does special
(12:15):
needs soccer league with hisfriends.
Speaker 1 (12:18):
I love it.
Speaker 2 (12:19):
We try to keep him busy and try to keep him from
getting into trouble.
Speaker 1 (12:23):
I guess is more of my opinion, yeah yeah, translation
.
You need to keep all kids,especially the ones with
disabilities, busy so we don'tget into trouble.
That's right, we don't get intotrouble.
I could easily get into troublemyself, yeah, yeah.
(12:45):
So what is your biggest dream?
I mean what when you think big?
What is your biggest dream foryour future and the future of
your son?
Speaker 2 (13:05):
Well, of course, for me, it's for him to have an
independent life.
Speaker 1 (13:10):
Right.
Speaker 2 (13:11):
And because it's such a rare disorder, such a rare
genetic disorder.
You know, there's only a few ofthem that are a little bit
older.
I think there's a 24 year old,but she is you know.
And then there's like a coupleof them they're a little bit
(13:31):
older, but it's hard to saybecause the variants are
different, the it's.
It's really truly I hate thisword, I absolutely hate this
word but it's kind of.
It's a spectrum.
You have to look at the spectrumand we don't know.
We don't know how he's gonnaend up.
We don't know.
And you know, it's scary tothink that you know the he has a
50 chance that if he does havea child in the future, that the
(13:56):
child will have the samedisorder, and so those are all
things that a mother of an 11year old should not be thinking
about, but that we do thinkabout.
Yeah, right, but of course,like, I think that the biggest
dream is for him to be happy,for him to have an independent
life, and really it's happiness.
(14:17):
That's what I want him to be.
I want him to be happy.
Speaker 1 (14:21):
Yeah, we all want humans to be happy.
We can't be moping around justbecause of our disability.
No, and as we wrap thisinterview up, I know you have
questions for me.
Speaker 2 (14:38):
Yes.
So I would love to know how youstarted all of this, what
you're doing right now, because,honestly, this is already hard
as it is for me who I'm justbarely starting with my business
.
You know, advocating and doingthe things that I'm doing, but
(15:01):
look at you like how did youstart this?
What?
How did it come up?
Speaker 1 (15:07):
I started it because, unfortunately, I lost my mom in
2010, and I had to do somethingbecause she was my best
advocate.
So I had to do something inhonor of her and this is how I
(15:33):
started this then project.
I was going to do this as aside project and keep my other
company going selling artwork,but this turned into my job, and
writing books turned into myjob, and this is stuck.
(15:53):
Books turned into my job andthis is stuck.
I mean, I wanted to do this forthe parents who have newly
diagnosed kids and they're stuckin the hospital.
I mean, my mom didn't haveanything.
I was born in 87, so no Google,no podcast, no, nothing, barely
(16:15):
a support group, and so no Zoomto do this either.
So she was finding outeverything on her own and at
points they said to her but whenin a home she'll never function
(16:35):
, my mom goes no, we'll take herhome, We'll love her the way
she is, We'll have her functionto the best of her abilities.
So this is why I started allthis.
I started all this because Ineeded to do something for the
(16:58):
parents that have nothing at thebeginning of their journey.
Speaker 2 (17:05):
It's so, it's so true , right, when, like we, for me,
like I'm lucky that I do haveinternet, that I have you know
where to go, look for this.
Like that we have Google Meetor Zoom or whatever it is that
you can talk to people allacross the world.
(17:27):
And you know, for the parentswho did this earlier in life,
like earlier in in in the years,I can only see that my.
So, just really quick, I have abrother who I he's in the
spectrum.
He, he has autism and he wasnever diagnosed because nobody
(17:48):
really knew what it was and sohe was just the little, not the
good kid at school, you know,for the longest time and my mom
really didn't know, like whereto go and search for it.
So, honestly, I commend you fordoing what you're doing Because
, really, this, this, I thinkthat you're helping a lot of
people and I appreciate whatyou're doing.
(18:12):
I really do.
Speaker 1 (18:14):
Well, thank you, because I try to help as many
people as I can.
I mean, I gave and I'm here inArizona, by the way.
I am here in Phoenix, arizona,and I gave a speech in June to
my church and one of the womencame up to me who saw me speak
(18:41):
and she goes what transportservice do you use?
Because I'm having problemswith my transport service, so
with my daughter's transportservice.
And I told her and we textedand I gave her the number.
Now she's happy as a clambecause she didn't have to look
(19:04):
under a rock to find newtransport service.
She reached out to me because Ihave done all this research.
Sometimes you have to lookunder rocks and ask for help and
(19:25):
people will say to me peoplewill at me for that one.
People will say to me well, youhave a disability, it's okay
for you to ask for help.
No, I have a disability but Iask for help.
But it's okay for anyone to askfor help.
Speaker 2 (19:45):
That's what makes the world go around, I think I
think everybody, and when youhave good people, people who are
truly trying to help, it reallybrings it together and we can
have a better world.
And you can help your friendsat church with what I'm doing
(20:17):
right now, that I can helppeople to by advocating, by
becoming the best advocate thatI can be for the children that
I'm helping, and so this allcome kind of goes around, right,
and I think that, um, you knowwhat?
What goes around, comes around,and I think that goes around,
(20:38):
comes around, and I think thatyou know the the better we are,
the better people that we are,the better people we're going to
attract into our lives andwe're going to be happier for
that exactly, exactly, and Iknow you had a question for me
about my IEP yes, do you want totalk about IEP?
Yeah, I love it.
So how so you did you go intothe school district in, like,
(21:05):
I'm assuming, when you werethree, correct?
Speaker 1 (21:07):
I was very fortunate.
I went into a private schooluntil eighth grade and then I
went to my local public school.
Speaker 2 (21:21):
Okay, and did you stay in the public school until
you did you graduate from school?
I graduated.
Speaker 1 (21:29):
I graduated from school, I had IEP.
For those of you that don'tknow what IEP is, it's an
individualized education planfor kids and adults.
Now for kids with disabilitiesand adults who are going back to
(21:52):
college.
Thank you very much.
So the college level hassomething similar to IEP.
Speaker 2 (22:04):
Yeah, it's a little harder in college, though, and I
mean it's great that you'redoing it, but you know an IEP
it's.
It is such a like there are somany different levels.
Good IEP is bad, IEP is who?
So your mom was with you untilhow old were you?
Speaker 1 (22:28):
and how I.
When she died, I was 23 andthen, unfortunately, I lost my
dad In 2019, so, but my mom wasmy biggest advocate.
Speaker 2 (22:45):
Yeah, yeah, you know how.
How are IEPs designed for kidswith CP, like with you?
Know it's so hard.
Because did you?
I know that things kind of getworse right as you get older
with your diagnosis, correct.
Speaker 1 (23:06):
Mine doesn't get worse.
Cerebral palsy is not aprogressive disease.
Mine is getting.
I am in this situation rightnow where I am trying to get it
(23:26):
better actually, but I mine, cpis not a progressive disease in
the brain.
Okay, okay so, but how I set upis let's say, you need extended
test time, they will put in whenneeds extended test time or
(23:49):
when needs stuff regular.
I am an auditory learner so Iknow the answer.
I can retain stuff like thisnote tomorrow, but I just have.
My comprehension of the book ishard because I have trouble
(24:11):
holding the books.
Speaker 2 (24:14):
So do you?
Did you listen?
Did you have a?
And I know that this was awhile ago because you were.
You know you were born in the80 little bit different.
Speaker 1 (24:23):
I learned how to speak out of the state of
Colorado.
I actually learned how to speakwith one of the top speech
(24:45):
pathologists in the country andwe were about to look into
assistive device.
But assistive devices back thenweren't iPads, they weren't
cell phones, they weren'tsmartphones, because they were
(25:09):
huge they were about the size ofa table.
Speaker 2 (25:10):
Yes, I remember those the size of a table.
Yes, I remember those days whenI remember them.
Yes.
Speaker 1 (25:15):
Yeah, yeah, they certainly weren't apps on the
iPad, my God.
Speaker 2 (25:21):
Yeah, you know it's crazy because, like how far
we've come right with technology.
Yeah come right with technologyand I.
So we keep looking intodifferent types, different ways
that my son can learn, and rightnow it's like it's a touch
screen computer.
It's you know, it's they.
The computer reads to you, youcan dictate it and it will type
(25:45):
it out for you it's I, you know.
It's amazing how you did thiswhen this didn't exist.
Speaker 1 (25:54):
Yeah yeah, and this is why I'm doing what I do now,
because I will teach peopleabout technology and I will
teach people about podcastingtoo.
Speaker 2 (26:10):
I love it.
I love it that you have yourown podcast and you reach a lot
of people too, so I really whatyou're doing is so good for
everybody, and that's why I wasso excited to come on and talk
to you.
Speaker 1 (26:29):
Well, I appreciate that.
And where can people find youif they want more information?
Speaker 2 (26:37):
so they can find me.
I'm on all social media.
Uh, it's michelle show.
It is c-h-o-a-i-r-y.
I know it's a hard one,michelle show, itcom.
And or they can look for wisdomnumber four, complex kidscom.
So it's wisdom number four,complex kidscom.
Speaker 1 (26:59):
And.
Speaker 2 (26:59):
I do.
I, I'm an advocate and I alsohelp I.
I've been in the health healthcare business for many, many
years, and so I started helpingsome of the families that I
advocate for with some insurancestuff, because, as you know,
insurances don't cover anything.
Speaker 1 (27:20):
No, they barely cover hospital, let alone assistive
device.
And I'm not kidding when I saythat.
Speaker 2 (27:29):
Yes.
So anyway, I started helpingthem.
So if you have anybody, anychildren, that you have an IEP
that you need help with, I'mdoing for your listeners.
I will give them a free IEPreview so we can look through it
and kind of give them an ideaof what it is that they need to
(27:52):
be doing and kind of, yeah andif you um, here's my suggestion
if you get confused with theIEPs, always bring a advocate
with you who can listen for you,because you get.
(28:13):
They always say bring someone tothe doctors, but I would say
bring someone extra to your IEPso you don't get confused yes,
and just so you know, soeverybody knows and this is
something that I didn't knowwhen I first started this you
can bring anybody that you wantto bring to an IEP.
(28:35):
If you just need a friend tocome with you to give you the
strength and so you're notscared, you can do that.
And so just don't let them pushyou around.
And there's a reason.
Advocates are out there andthere is a need, and, um, I
promise you that if you have anadvocate or somebody with you,
(28:56):
that your child's iep will be somuch better and they will get
so much better, uh, servicesthan you would without somebody.
Speaker 1 (29:07):
I have a story based upon an advocate.
I got pneumonia, as you guysall know.
I got rushed from the to thehospital with pneumonia and that
was a story in itself becauseright now I'm temporarily bed
(29:32):
bound.
But my point is I told the casemanager at the hospital to call
my medical liaison.
She comes in before calling mymedical liaison, wants to change
my plan completely.
And then I said call my medicalliaison, wants to change my
plan completely.
And then, um, I said call mymedical liaison and she goes
(29:57):
well, I can't find the number.
I said the number's on theboard right behind you.
She walked in with a totallydifferent attitude after talking
to my medical liaison and I'mlike I told you people that.
So my point is always alwayshave a pay, always have an
(30:21):
advocate if you can swing one,because the less you you can a
team, you and the advocate cando a team.
But it's more reassuring if youhave the advocate here with you
(30:43):
, just because the advocate maycatch something you didn't.
Speaker 2 (30:52):
For sure, yes, no doubt.
Speaker 1 (30:56):
And we'll have all Michelle's information in the
show notes.
And it was lovely talking toyou and I hope you guys enjoyed
another fabulous episode of theWinning Heart and we'll catch
you guys enjoyed anotherfabulous episode of the Winning
Heart and we'll catch you guysnext time.
Bye you guys, bye everyone.
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