October 12, 2022 • 29 mins
October is Down Syndrome Awareness Month, in this episode join Stephanie Meredith, HDI's Medical Outreach Director and the mother of Andy, a 22 year old with Down syndrome. Stephanie reflects on Andy's youth as well as the state of genetic testing.
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(00:07):
[Patti] Hello and thank you
for tuning in to the State of HDI,
a podcast of the University
of Kentucky Human Development Institute.
This is Patti Singleton.
With me in
the studio is Stephanie Meredith.
Stephanie is the medical outreach
director at HDI.
Author, Doctoral student,
mother of three, and Georgia resident.
Welcome. [Stephanie] Thanks for having me.
(00:29):
[Patti] First,
October is Down Syndrome Awareness Month.
Your son, Andy,
just celebrated his 22nd birthday.
What does
adult life
with Down
syndrome look like for him right now?
[Stephanie] Adult life right now
actually looks pretty fun.
He just started
his first semester of college
at Rhinehart University,
and he's auditing a couple of classes.
(00:50):
He's taking a multimedia projects class
and a web design class.
And what's really great about it
is he goes on Mondays
and Wednesdays
from 9 to 5
because he has class at 11 and two.
And so in the middle he is able to go.
He has a commuter lunch plan
and he's able to go have lunch
with his friends
who were on the lacrosse team
(01:11):
with him in high school.
And now they're together
at this little kind of
country college
up in the mountains in Georgia.
So they're having a great time.
He also works at Publix
as a grocery store employee.
And he does
that, you know, one or two times a week.
And he also has a photography career
where he travels with his dad
and they take photos
all over the country,
which is really pretty fun for them.
(01:32):
And then he coaches lacrosse
every afternoon that he is not at school.
So he is very busy.
We are very busy
getting him to all the places
that he needs to go.
But fortunately
he actually
is also able
to access the county disability
bus service to get up to college,
which helps a ton
because I think really
(01:53):
one of our key challenges
figuring out in adulthood
has been transportation.
And so it's been a big help
as we figured out
some of those other resources
that can get us through that.
[Patti] Yeah, it sounds like it,
but transportation is always difficult
and so having that to rely on, it's great
that Andy is in such integrated
settings too.
It really
sounds like he's he's
with a great mix of people.
(02:15):
[Stephanie] Oh, yeah.
And really having those friends
they have carried over from high school
who are in college with him
has been such a benefit
because they've been able, you know,
like his first day of class,
they met up at the Gordy dining hall
and his friend took him to
when his second class was
so that he knew where to go.
And they just helped to facilitate
(02:36):
that transition.
But he's also there for them.
I always try to be really careful
about when we talk about this
that, you know, his friends
offer him help in areas,
but he also offers them
help in areas as well.
So they definitely support each other.
[Patti] Stephanie, tell me if you could go back
and give advice to younger self
on your diagnosis day,
what would you say?
(02:57):
[Stephanie] I think what I wish
I could say to my younger self is don't
get too caught up
in putting so much pressure on yourself
to do all the things
and that,
you know, there isn't one decision
that's going to be
the cataclysmic decision
that's going to make all the difference
in the world.
It's a collection
of all of those little things
that you do along the way,
(03:18):
because I used to put
so much pressure on myself for,
oh, this IEP meeting,
I've got to make sure that I figure out
exactly the right setting,
or I've got to do all of these
different exercises
in order to get him to accomplish
a developmental milestone,
to be able to walk, to be able to talk
and to do those things.
And I wish that I could go back
(03:38):
and just say, you know,
the most important thing
has been
being fully engaged
in the community
together and enjoying time together
and not to worry
about some of those decisions
within the system
that they didn't up
working themselves out.
[Patti] And what would you have done
differently now,
thinking back to when Andy was younger?
[Stephanie] Yeah, I thought about that
and I wish that
(03:59):
I had been more open
to some creative solutions
because at the time, again,
I thought there was like the
script for life.
You know,
you go to school,
you go to college, you do the things and
and there
are lots of actually different ways
to have meaningful experiences, right?
So, you know,
there were times
when maybe he was struggling in school.
(04:19):
And I thought,
I've got to figure out this,
like I said before, this perfect IEP.
But, you know,
there are also there's homeschooling,
there's traveling,
there's lots of different ways
that you could possibly solve
different issues that come up.
And I think that I had it in my head
that there were just
these kind of formulas
I needed to follow.
And I wish I could have thrown
those formulas out the door. Right.
(04:40):
Because some of the best things happen
when you throw some of that out the door.
[Patti] What things worried you
when your children were smaller
that looking back,
you wouldn't worry about now?
[Stephanie] I think I worried a lot
about making sure
he was doing what everyone else was doing
and meeting all of the milestones.
(05:01):
And I
worried about
making sure he was fitting in.
And I think there's some aspect of that
where you want to give your kids
the tools that they need
and what they want
in order to fit in,
but not to be doing it,
because I'm trying to
kind of keep up with the Joneses. Right?
There isn't
this perfect ideal of a person
(05:23):
that you're trying to meet.
You're trying to help
your child be the best they can be.
And the thing is
that there were certain things
along the way
like he was really into Batman
in high school and I was like, Well,
is that really age appropriate
and do we need to be having conversations
about that?
And we did, and we kind of worked on it.
(05:44):
And he really pushed back
and he's like, No, this is my thing.
And I like it.
And it turns out
that was a real connection
he had when he was talking to friends
and other
young people thought it was cool
and I think I was trying
to make sure he was meeting
this expectation
that really was something
that was endearing
to other people about him.
And so I think it's important
to let our kids be themselves
(06:06):
and to, yes, help them get the tools
they need to accomplish their goals,
but not to feel like
you have to keep up with the Joneses.
In a way.
[Patti] I know all three
of your children
who are each doing incredible work.
What is something
you did as a parent
that you think
helped your children
either accidentally or on purpose?
(06:26):
[Stephanie] I love that
you wrote that
accidentally or on purpose,
because I think there are definitely
two sides of that coin.
Some of the things that I think we did
well on purpose
were that we really did
try to have a lot of fun together.
I mean, we went waterfall jumping
and we planned
we went blueberry picking together
and we did all of the fun things
(06:46):
as a family.
And I think that really helped build
my kids to be close to each other.
And I think also we've talked a lot,
you know,
and we talk about how their day went.
And my kids know that
if they get home from school and I say,
how did your good day go?
And they just say, Fine,
I'm going to be like,
Give me more details I need to know.
And so they give me kind of their hour
(07:07):
by hour what they did.
And we discussed how that went.
And I think that's been helpful.
And I think
also teaching
another on purpose thing
I did was teaching them service
that we need to
we need to serve other people
in our community and at church.
And that needs to be part of,
you know, learning
how to be a good human.
I think that those were on purpose
(07:28):
things that I did.
But the accidentally,
I think is kind of more entertaining.
I have this whole kind of series I did
on being a mediocre
mom of a kid with Down Syndrome.
And to be honest,
if you Google mediocre
mom and Down syndrome, I pop up
and I'm kind of proud
about that in a way,
because it shows a lot of what
Andy accomplished despite me.
And some of that is like I was trying
(07:51):
to manage three kids.
There were times I lost track of them.
There were times
when I had to make them
do things on their own
because I couldn't meet
everybody needs at the same time.
And I think that really fostered
a lot of independence with them.
Like I had,
you know,
one time
where we were looking for a dress
for my daughter.
And I think Andy was maybe 14 years old,
(08:12):
and she ended up leaving the store
because he was bored with his sisters.
And he went into a restaurant in the
in the strip mall
and he ended up,
you know, calling me and texting.
And he's like,
Mom, I left like, okay, let's go.
And he took a picture.
He couldn't pronounce
the place he was at,
but he thought to take
(08:32):
a picture of the menu
and sent it to me, which
then let me know where he was.
And so I think that
in some ways
the fact that I wasn't able to do
sometimes everything from each kid
all the time
actually meant that they ended up
being more independent.
And I think that was pretty cool.
[Patti] In the
Brighter Futures checklists,
which you helped to develop,
(08:53):
there are many recommendations
to support your child's interests.
What has been a hobby or interest
that Andy has found
and enjoyed throughout life?
[Stephanie] So the one we really picked up on
when he was about eight years
old was a gift he has for photography.
And it came about
my husband is involved
in design and photography
(09:13):
and he was on a photo shoot one day.
And just to entertain Andy,
he handed him a camera
and we went through - when we went back
and went through the pictures,
we saw some that he took
that were really cool.
Now, granted,
it was probably like
five out of a thousand,
but we ended up talking
to my husband's brother,
who's a professional photographer,
and we said,
you know,
(09:33):
we're seeing a spark of a talent here.
And I think we have to look for that
in all of our kids,
including our kids with disabilities.
Like, what is
that, the spark of talent
and also the passion
that they have for things.
And so we said, what
can we do to cultivate this for him?
And he said, Well,
a really good strategy is to print out
the pictures that he does
well and hang them in his room.
(09:55):
And so we created this kind of line
in his room
with clothespins
where we've been hanging
his really cool pictures.
So we printed them out.
And so he got a sense
of what it looked like
when he took a good picture,
and that was how we started that.
And then we just kept handing him
the camera more often
and in front of more interesting things.
And now he's to the point where,
you know, at 22 years old,
(10:16):
he can hop out of the car
in front of a lighthouse
that Justin is taking him to.
Justin's my husband, and he'll, you know,
maybe take five pictures
and all of them are great, right.
You know, but it - it took seeing
that talent
and cultivating it
and giving him opportunities.
The other thing we did along the way
(10:37):
is, you know,
those PTA reflections contests,
we would enter him into those
and so he would get that feedback
that people give you attention
and think it's cool
when you have a talent.
And we did
that as well for charity fundraisers.
We would donate his photography
and he would get that positive
reinforcement of
I can use my photography
also to help people.
And so I think that those are ways
(10:58):
that you can help
any kid develop a talent.
But especially, again,
we have to
make sure that we're looking for those
in our
and our kids with disabilities too.
[Patti] Absolutely.
We've already talked
about Andy's
job at Publix
and then also his photography business.
What are some of the things you did
when Andy was younger
to prepare him for employment?
(11:20):
[Stephanie] I think one thing
that is really key
both to preparing kids for employment
and also if you have multiple kids
making sure
that there is a sense of fairness
among your kids
as making sure
that your kid with a disability
has chores.
And so
they have to be obviously
developmentally appropriate chores
because sometimes kids are at different
(11:41):
levels of what they can do.
But as long as they are
constantly kind of being pushed to do
the next level
of what they're capable of,
that's what we need to be doing.
First, he had to pick up his room.
He had to put dishes in the sink,
that sort of thing.
And then it was,
All right,
I got to sleep
and you got to rake leaves.
It got to the point by the time he was,
(12:02):
I think, 12 or 13,
he really wanted to go to a horse
riding camp.
But he was too old.
But they had the position
for the youth helpers.
So we signed him up to be one of the
youth helpers and we called it
horse poop skipping
camp, you know,
and, but it taught him the value of work
and that you get to be somewhere
(12:22):
and interact with people when you work.
And I think the other key for us
was that to prepare
for employment was having him be included
with his peers.
And that's really
where his job story came from,
because all of his friends were starting
to work at the local grocery store.
And so Andy was like, Well,
I want to work there too.
And that's what you do
when you're 16 years old.
(12:44):
So that's where he took off on his bike
when he was 16 years old to go get a job.
He told me on the way home from school
one day he's like, Mom,
I want to go work at Publix.
And I told him,
I going to have to check into it.
And in my head I'm thinking,
I got to check on a job coach.
I got to talk to the school
about how to facilitate that.
(13:05):
And in his head,
he was telling me
what he was going to do that day.
And so while I was making dinner,
he ends up taking off on his bike.
Unbeknownst to me,
I didn't find out until his sister
went to go get him for dinner.
And she's like, Mom, Andy’s not here.
And I went out to the garage
and his bike was gone.
And so and I had two missed
calls on my phone
because I'd been on the phone
with my mom on making dinner
(13:26):
and he said, Mom, I go to Publix,
I go get a job, you come get me.
And I'm like,
Oh no, because it's starting to get dark.
And they didn't want him to ride his bike
home in the dark by himself
because there is a major intersection.
But, you know,
he got on that intersection
probably 50 times
with us as a family
going to the biking trail.
So he knew what he was doing.
And I had friends who were spying on him
(13:48):
because they just saw him on
the way home from work
and they're like,
He did everything
you're supposed
to do crossing the street.
And so he went in the store
and he asked his friend,
How do I get a job?
And they sent him to the front desk
and he just got tripped up
as he was on the kiosk
because he struggles
with reading and writing.
And so that's when he called me for help,
which is totally what you should
do, right when you encounter a challenge.
(14:09):
So I think it was a combination too
of the inclusion,
the fact that he had confidence
in his skills,
that he knew how to get to the store.
And also once he got to the store,
he knew when to ask for help,
because I think it is important
for our kids to know that, too. [Patti] Right.
And he had this expectation that
he was going to do
what his friends were going to do.
[Stephanie] Exactly.
(14:30):
[Patti] As a mom.
What are some of the most
important skills
to prepare your kids to be adults?
[Stephanie] I think it's really important
to make sure
that as we're
trying to
help our kids become adults, that we,
first of all, instill confidence in them,
that they can do things on their own
and that independence.
(14:50):
And so I think that requires
that dignity of risk.
We talk about,
especially with a disability
and saying,
okay, where are the areas
where I can pull back a little bit?
And I mean, it's individual
for each person, right?
Like if I noticed that my kid is,
you know, for example, oh, they're -
they're really competent
now at raking the leaves in the yard.
(15:13):
Well, then maybe then
it's time that you can move on to
maybe you could
help with some other types of yard
work, like pulling weeds and,
and then they can do
the raking on their own.
So I think it's
looking for those opportunities
to pull back as a parent
so that they develop confidence
in those skills
that you've been teaching them.
And I think really important skills
(15:33):
toward
independence are obviously
your transportation as much as possible.
It helps a lot
that Andy could walk
or ride his bike to work,
and biking was a really hard skill
to develop.
I mean, we had
we had days when he was little where,
you know, just teaching him to ride
a tricycle was really challenging.
(15:54):
He was using training
wheels up until the time he was ten.
And we were at a point
where the training wheels were bending
on either side.
And so we were going to do a lose
the train mode camp,
which is,
you know,
another great resource
out there to work on that.
But I knew he was so
close and I said, Andy,
you know,
if you will try it
(16:15):
without the training wheels,
I will take you out for ice cream.
And his friends were in the cul de sac
and he goes, and my friends?
And I say, okay.
And so he not only did he go like,
you know, the eight feet
that I thought he would,
but he did, you know, a
lap around the circle.
And I mean,
my daughters are cheering
because they knew that
(16:35):
the training camp
was going to cost us money.
And they were like,
Andy, you're the hero of our families.
We don't have to pay for
the camp anymore,
but we would gladly would have done it.
But it was kind of
so I was like, you know, I will take you
not only of ice cream,
we will get French fries
and this will be a party
with your friends.
So I but I think it's taking that leap of
(16:55):
can I take those training wheels off?
Right.
And looking for the opportunities
for when we can do it.
[Patti] All right.
Can you describe a time when your
kids surprised you?
[Stephanie] Yes.
And I
think that this
I hope this is helpful
for other parents of kids
with disabilities, too,
because I think
a lot of times
kids with disabilities are not given
the opportunity to be leaders.
And so to me,
(17:16):
one thing that has really surprised me
has been his leadership capacity and
the way it really shocked us
was his senior year of high school.
He had some really positive interactions
in car rider line with the lacrosse coach
and he approached us in the fall
and said, I'd really like
Andy to be on the team.
And, you know, for, like I said, lacrosse
(17:36):
kind of a violent sport.
And he's he'll be fine.
It'll be fine. It's okay.
And he's like
and I wanted to actually get play time
and I wanted to work out with
the boys is like
I wanted to genuinely
be a member of the team.
So I mean, this was an opportunity
he was given
and we appreciated that opportunity.
But then about the fourth game
in, we noticed
that Andy was flipping the coin,
(17:57):
which is what the team
captain does come across.
And there are usually,
I think four or five team captains.
And we said,
why isn't he on the field
flipping the coin?
And they said, Oh, well,
he said, he's a team captain now.
And instead, really,
it's like, is that okay with you guys?
And one of his
best friends from childhood was the
(18:18):
like the main team captain,
and he's like, yeah, you know, you
he wants to do it.
And then a little later in the season,
we would hear the kids chanting,
Woodstock, Woodstock, Andy.
And we didn't know why
they were doing this in their huddle
until the senior banquet.
And at the senior banquet
(18:38):
they said, okay, Andy, do it.
And he would say, Who's your team?
They say, Woodstock.
Who's going to win Woodstock?
Who's your team?
Captain Andy.
But at the senior banquet
he said, Who's your coach?
And they said, Andy.
And that was when Andy
named himself
a coach, and he's been coaching
now for three years.
But we have to give our kids
(18:59):
the opportunity to be leaders or to shine
in whatever way it is
that they have the capacity to do right
and to give them that opportunity
to shock us,
because I had no idea
you got that in him.
And it was so fun to see
it happen right in.
[Patti] Those teammates are still his friends.
I mean, those are some really important
relationships in his life. [Stephanie] Yeah.
(19:20):
[Patti] What is one thing
you are most proud of your child
with Down Syndrome -
Andy -
that has nothing to do
with accomplishing a milestone?
[Stephanie] This is actually a question
that was asked to me
when I was on a parent panel
at a conference,
and I loved how it made me think
because I think so
often, like I said earlier,
we gauge, oh,
you know, we've really made it
when we've hit this milestone.
(19:41):
But there are things about our kids
character
that has nothing to do with any of that
that really can
make us very proud of who they are
and the moment that came to me
was when we were at a basketball,
my daughter's basketball game.
And she was probably,
I think, third grade at the time.
And she ended up
bumping into another girl
(20:02):
and falling on the court.
And you could hear her like the crack
when her head ricocheted off
it, off the floor.
And it was really scary.
And before anyone could do
anything,
I can't believe I cry
every time I call it that.
Andy, jump down to bleachers.
And he didn't care
about the rules of the game
(20:22):
and he just scooped her up.
And I loved that he had that
just gut reaction
of taking care of somebody he loves
and he didn't care about the rules.
You know,
I think a lot of times
we also looking at the court were like,
oh, can I jump down if,
you know,
how is this going to affect the play?
He didn't care.
(20:42):
And it was like the most important thing
was taking care of his person.
And I love that.
[Patti] And I assume everyone's okay now.
[Stephanie] Oh, yeah.
And actually, she was totally fine,
but it just sounded really bad.
[Patti] All right.
So genetic counseling
is often offered after the prenatal test
when families
find out if their child
is likely to have Down syndrome.
(21:04):
Down syndrome
genetic testing has changed so much
even in the last ten years.
So tell me where we are.
[Stephanie] I mean,
first of all, we've
had a lot of developments
in the testing itself.
And there, there are blood tests now
that have greater accuracy
than previous tests,
although there are still
(21:25):
opportunities for false
negatives and false positives.
But by and large,
they are more accurate than
the previous tests have been.
And so families are getting information
about a possible diagnosis
earlier in pregnancy.
And I think
one of my first concerns with that
is that a lot of them aren't
getting genetic counseling
because it's happening so early
and the results are being delivered
(21:45):
maybe by an OB
or a family practitioner
who doesn't have the level
of training
about disability
that a genetic counselor would.
But then also in we are finding in
some of the
research that we've done of patient
diagnosis experiences that,
you know,
there has been progress
among genetic counselors
(22:07):
with providing like
information about national
and local advocacy organizations
and some of the
social outcomes
and providing some printed resources.
But we are
we're still seeing
that it's not happening as globally as
we would like to see it happening,
especially by leaders
in those medical communities.
(22:27):
You know, they're really on board.
Let's make sure that,
you know, families are getting
that full spectrum of information
because families don't want to just know
a list of medical issues.
They want to know what life is like.
And so I think that while there has been
a measure of progress there, still it's
there's still a ways to go for it
in order for it to be universal,
(22:48):
because we are still hearing some
pretty negative
biased diagnosis experiences.
And I would say
it happens even more often
when it's a provider
who has not had the level
of training of a genetic counselor,
but it still happens all around.
[Patti] So what are some ways
people in our community,
including medical providers,
can familiarize themselves
(23:09):
with intellectual disabilities,
including Down's syndrome?
[Stephanie] I think there are a number
of different ways.
I think, first of all,
we need more training
when people are in school.
We need to make sure that they're
getting training on
how to sensitively deliver a diagnosis,
which means things like Don't say
I'm sorry
and assume that it's bad news, right?
Because that's a bias
that we're injecting
into a perception about disability.
(23:30):
If you are a deaf person
and you
take a lot of pride in your culture,
finding out about that
your child is deaf, is not bad news
in many ways.
It's a connection
you have that you might be excited about.
Right.
And so I think that you have to be
I think clinicians
need to understand
how to sensitively deliver a diagnosis,
(23:50):
but also that other component of
disability being an identity
and not an outcome.
And I think there's a whole civil right
social justice component
that needs to be included
not only in medical education
but in public education.
I mean, we talk about
civil rights movements,
(24:10):
which are really important.
And I think a lot of times
disability is left
out of that conversation.
And I think that it needs to be included
more often.
And then I think also
if medical providers
can get involved in advocacy
organizations
and also have parent panels or
and panels of individuals
with disabilities
where they're actually having
those conversations with people
who have lived experience,
(24:30):
that's really important, too. [Patti] Absolutely.
So what is your hope
for genetic counseling in the future?
[Stephanie] I would like
to see
that mandatory disability rights training
and also
how to discuss disability
in the diagnosis that
we had a prenatal disability education
summit in May.
(24:52):
And that was one of the big findings
that came out of that
from leaders
in the medical community
to saying
this really needs to be
more of a mandatory training
rather than something
that is piecemeal happening.
I would also really like to see
medical providers
be advocates
with the disability community
on certain issues like, you know, having,
(25:14):
for example,
health care plans, pay for hearing aids.
You know let's, let's work together
on some of these issues
and also reimbursement
for genetic counseling,
because that's another
big problem, too,
is that we don't have
universal coverage for that.
And so I think there are areas
in which we can be
allies and work together,
and I would really like to
see more of that.
(25:36):
[Patti] So equity in health care is something
you are very passionate about.
So tell me what that means to you.
[Stephanie] I think it means
definitely equity and access,
and that requires
a whole host of making
sure systems are fair.
But can you all get
can everybody get the health insurance
they need?
(25:56):
Can everybody get access
to the health care that they need?
I think that is that's one piece of it.
And, you know, with our Center
for Dignity and Health
Care for people with disabilities,
we looked at a number of different areas
in which people
with disabilities
sometimes encounter discrimination.
And that was, you know,
we talked about prenatal testing, covered
(26:16):
mental health,
aging in end of life and organ transplant
and understanding and recognizing
where some of those gaps are happening.
I think that's another key component,
is analyzing those systems
and seeing, hey,
where are we having gaps?
How can we fix it?
How can we make sure
people have their access
to medical treatment?
(26:36):
But I think it's also making sure
that clinicians
better understand
again,
they've got to better
understand disability so that they aren't
making stereotypes
about people or engaging
in discrimination
or perpetuating some of those ideas
when they're discussing disability.
And we had an incident
sort of like this
in our family
(26:58):
where we went to an urgent care because
and he had sat on a pencil,
his sister left in a chair.
And we've been waiting in the room
and we were being triaged.
And then the doctor came in
and said, Hey, you know what he said?
Still, if I try to treat him.
And I said, Yeah, he will.
He's been sitting out here in the
waiting room,
and I think there was an assumption there
(27:19):
that behaviorally he would not be able
to to work with him on that.
The whatever procedure was required,
I have to
I have to give the caveat that he would
the doctor was also not a native
English speaker.
So there were some communication issues
with trying to make sure
we were communicating together.
But he said we
don't treat people like him here.
And so
(27:40):
I didn't know
whether he meant the urgent care.
Don't treat people with puncture wounds
or if he meant
we don't treat people with Down syndrome.
And he told me that we needed to go
to the children's hospital
and we'd already been waiting there
for forever.
And so we actually just
ended up going home
and I took care of it myself.
And I mean, that's not the best outcome
that we want for people.
(28:01):
And what I've since learned, too,
is that
when you're in a situation
like that,
the health facility
should provide you transportation
to the next place.
And I think
and I also followed up
with friends in the medical community
who said, no, of course,
they treat puncture wounds and
urgent care.
He was saying
that they don't treat people
with Down syndrome. And I, I think that
I think there were a lot of assumptions
(28:23):
about what it means
to be a person with Down syndrome
and a lot of stereotypes
that ideally training
and better exposure
to people with disabilities
can help alleviate.
And I think that's
how we get better equity in health care.
[Patti] It's probably less so too close.
What advice
do you have for families
as we celebrate Down
Syndrome Awareness Month?
[Stephanie] I think for me
the key is assuming they belong.
(28:44):
And this came up.
I'm active
in a lot of social media groups
with younger parents,
and a lot of them
were kind of expressing, I,
I feel like I would ask permission
for my kid
to be in a gymnastics class or to,
you know, go to this karate thing.
And my advice to them
(29:04):
was don't ask permission,
assume they belong.
I mean, yes,
we want to set up
the scaffolding in place
so that they're successful. Right.
And sometimes there's
a negotiation involved with that.
But I think we want to put other people
in the position of explaining why - why
they wouldn't belong.
I mean, I think
and I think often when we just assume
(29:25):
they belong, other people roll with it
because they're like, okay, you know,
I'm just going to do that too,
I think, as best as possible.
And it's hard when you're a new parent,
but if we can convey that confidence
that I am
I kid belongs anywhere
that that or anybody else's,
then hopefully other people will
kind of just follow our lead.
(29:46):
[Patti] That's fabulous.
All right.
Well, from one mediocre
mom to another,
I thank you for your time.
Thank you all for listening. [Stephanie] Thank you.
[Patti] Hello and thank you
for tuning in to the State of HDI,
a podcast of the University
of Kentucky Human Development Institute.
This is Patti Singleton.
With me in
the studio is Stephanie Meredith.
Stephanie is the medical outreach
director at HDI.
Author, Doctoral student,
mother of three, and Georgia resident.
Welcome. [Stephanie] Thanks for having me.
(00:29):
[Patti] First,
October is Down Syndrome Awareness Month.
Your son, Andy,
just celebrated his 22nd birthday.
What does
adult life
with Down
syndrome look like for him right now?
[Stephanie] Adult life right now
actually looks pretty fun.
He just started
his first semester of college
at Rhinehart University,
and he's auditing a couple of classes.
(00:50):
He's taking a multimedia projects class
and a web design class.
And what's really great about it
is he goes on Mondays
and Wednesdays
from 9 to 5
because he has class at 11 and two.
And so in the middle he is able to go.
He has a commuter lunch plan
and he's able to go have lunch
with his friends
who were on the lacrosse team
(01:11):
with him in high school.
And now they're together
at this little kind of
country college
up in the mountains in Georgia.
So they're having a great time.
He also works at Publix
as a grocery store employee.
And he does
that, you know, one or two times a week.
And he also has a photography career
where he travels with his dad
and they take photos
all over the country,
which is really pretty fun for them.
(01:32):
And then he coaches lacrosse
every afternoon that he is not at school.
So he is very busy.
We are very busy
getting him to all the places
that he needs to go.
But fortunately
he actually
is also able
to access the county disability
bus service to get up to college,
which helps a ton
because I think really
(01:53):
one of our key challenges
figuring out in adulthood
has been transportation.
And so it's been a big help
as we figured out
some of those other resources
that can get us through that.
[Patti] Yeah, it sounds like it,
but transportation is always difficult
and so having that to rely on, it's great
that Andy is in such integrated
settings too.
It really
sounds like he's he's
with a great mix of people.
(02:15):
[Stephanie] Oh, yeah.
And really having those friends
they have carried over from high school
who are in college with him
has been such a benefit
because they've been able, you know,
like his first day of class,
they met up at the Gordy dining hall
and his friend took him to
when his second class was
so that he knew where to go.
And they just helped to facilitate
(02:36):
that transition.
But he's also there for them.
I always try to be really careful
about when we talk about this
that, you know, his friends
offer him help in areas,
but he also offers them
help in areas as well.
So they definitely support each other.
[Patti] Stephanie, tell me if you could go back
and give advice to younger self
on your diagnosis day,
what would you say?
(02:57):
[Stephanie] I think what I wish
I could say to my younger self is don't
get too caught up
in putting so much pressure on yourself
to do all the things
and that,
you know, there isn't one decision
that's going to be
the cataclysmic decision
that's going to make all the difference
in the world.
It's a collection
of all of those little things
that you do along the way,
(03:18):
because I used to put
so much pressure on myself for,
oh, this IEP meeting,
I've got to make sure that I figure out
exactly the right setting,
or I've got to do all of these
different exercises
in order to get him to accomplish
a developmental milestone,
to be able to walk, to be able to talk
and to do those things.
And I wish that I could go back
(03:38):
and just say, you know,
the most important thing
has been
being fully engaged
in the community
together and enjoying time together
and not to worry
about some of those decisions
within the system
that they didn't up
working themselves out.
[Patti] And what would you have done
differently now,
thinking back to when Andy was younger?
[Stephanie] Yeah, I thought about that
and I wish that
(03:59):
I had been more open
to some creative solutions
because at the time, again,
I thought there was like the
script for life.
You know,
you go to school,
you go to college, you do the things and
and there
are lots of actually different ways
to have meaningful experiences, right?
So, you know,
there were times
when maybe he was struggling in school.
(04:19):
And I thought,
I've got to figure out this,
like I said before, this perfect IEP.
But, you know,
there are also there's homeschooling,
there's traveling,
there's lots of different ways
that you could possibly solve
different issues that come up.
And I think that I had it in my head
that there were just
these kind of formulas
I needed to follow.
And I wish I could have thrown
those formulas out the door. Right.
(04:40):
Because some of the best things happen
when you throw some of that out the door.
[Patti] What things worried you
when your children were smaller
that looking back,
you wouldn't worry about now?
[Stephanie] I think I worried a lot
about making sure
he was doing what everyone else was doing
and meeting all of the milestones.
(05:01):
And I
worried about
making sure he was fitting in.
And I think there's some aspect of that
where you want to give your kids
the tools that they need
and what they want
in order to fit in,
but not to be doing it,
because I'm trying to
kind of keep up with the Joneses. Right?
There isn't
this perfect ideal of a person
(05:23):
that you're trying to meet.
You're trying to help
your child be the best they can be.
And the thing is
that there were certain things
along the way
like he was really into Batman
in high school and I was like, Well,
is that really age appropriate
and do we need to be having conversations
about that?
And we did, and we kind of worked on it.
(05:44):
And he really pushed back
and he's like, No, this is my thing.
And I like it.
And it turns out
that was a real connection
he had when he was talking to friends
and other
young people thought it was cool
and I think I was trying
to make sure he was meeting
this expectation
that really was something
that was endearing
to other people about him.
And so I think it's important
to let our kids be themselves
(06:06):
and to, yes, help them get the tools
they need to accomplish their goals,
but not to feel like
you have to keep up with the Joneses.
In a way.
[Patti] I know all three
of your children
who are each doing incredible work.
What is something
you did as a parent
that you think
helped your children
either accidentally or on purpose?
(06:26):
[Stephanie] I love that
you wrote that
accidentally or on purpose,
because I think there are definitely
two sides of that coin.
Some of the things that I think we did
well on purpose
were that we really did
try to have a lot of fun together.
I mean, we went waterfall jumping
and we planned
we went blueberry picking together
and we did all of the fun things
(06:46):
as a family.
And I think that really helped build
my kids to be close to each other.
And I think also we've talked a lot,
you know,
and we talk about how their day went.
And my kids know that
if they get home from school and I say,
how did your good day go?
And they just say, Fine,
I'm going to be like,
Give me more details I need to know.
And so they give me kind of their hour
(07:07):
by hour what they did.
And we discussed how that went.
And I think that's been helpful.
And I think
also teaching
another on purpose thing
I did was teaching them service
that we need to
we need to serve other people
in our community and at church.
And that needs to be part of,
you know, learning
how to be a good human.
I think that those were on purpose
(07:28):
things that I did.
But the accidentally,
I think is kind of more entertaining.
I have this whole kind of series I did
on being a mediocre
mom of a kid with Down Syndrome.
And to be honest,
if you Google mediocre
mom and Down syndrome, I pop up
and I'm kind of proud
about that in a way,
because it shows a lot of what
Andy accomplished despite me.
And some of that is like I was trying
(07:51):
to manage three kids.
There were times I lost track of them.
There were times
when I had to make them
do things on their own
because I couldn't meet
everybody needs at the same time.
And I think that really fostered
a lot of independence with them.
Like I had,
you know,
one time
where we were looking for a dress
for my daughter.
And I think Andy was maybe 14 years old,
(08:12):
and she ended up leaving the store
because he was bored with his sisters.
And he went into a restaurant in the
in the strip mall
and he ended up,
you know, calling me and texting.
And he's like,
Mom, I left like, okay, let's go.
And he took a picture.
He couldn't pronounce
the place he was at,
but he thought to take
(08:32):
a picture of the menu
and sent it to me, which
then let me know where he was.
And so I think that
in some ways
the fact that I wasn't able to do
sometimes everything from each kid
all the time
actually meant that they ended up
being more independent.
And I think that was pretty cool.
[Patti] In the
Brighter Futures checklists,
which you helped to develop,
(08:53):
there are many recommendations
to support your child's interests.
What has been a hobby or interest
that Andy has found
and enjoyed throughout life?
[Stephanie] So the one we really picked up on
when he was about eight years
old was a gift he has for photography.
And it came about
my husband is involved
in design and photography
(09:13):
and he was on a photo shoot one day.
And just to entertain Andy,
he handed him a camera
and we went through - when we went back
and went through the pictures,
we saw some that he took
that were really cool.
Now, granted,
it was probably like
five out of a thousand,
but we ended up talking
to my husband's brother,
who's a professional photographer,
and we said,
you know,
(09:33):
we're seeing a spark of a talent here.
And I think we have to look for that
in all of our kids,
including our kids with disabilities.
Like, what is
that, the spark of talent
and also the passion
that they have for things.
And so we said, what
can we do to cultivate this for him?
And he said, Well,
a really good strategy is to print out
the pictures that he does
well and hang them in his room.
(09:55):
And so we created this kind of line
in his room
with clothespins
where we've been hanging
his really cool pictures.
So we printed them out.
And so he got a sense
of what it looked like
when he took a good picture,
and that was how we started that.
And then we just kept handing him
the camera more often
and in front of more interesting things.
And now he's to the point where,
you know, at 22 years old,
(10:16):
he can hop out of the car
in front of a lighthouse
that Justin is taking him to.
Justin's my husband, and he'll, you know,
maybe take five pictures
and all of them are great, right.
You know, but it - it took seeing
that talent
and cultivating it
and giving him opportunities.
The other thing we did along the way
(10:37):
is, you know,
those PTA reflections contests,
we would enter him into those
and so he would get that feedback
that people give you attention
and think it's cool
when you have a talent.
And we did
that as well for charity fundraisers.
We would donate his photography
and he would get that positive
reinforcement of
I can use my photography
also to help people.
And so I think that those are ways
(10:58):
that you can help
any kid develop a talent.
But especially, again,
we have to
make sure that we're looking for those
in our
and our kids with disabilities too.
[Patti] Absolutely.
We've already talked
about Andy's
job at Publix
and then also his photography business.
What are some of the things you did
when Andy was younger
to prepare him for employment?
(11:20):
[Stephanie] I think one thing
that is really key
both to preparing kids for employment
and also if you have multiple kids
making sure
that there is a sense of fairness
among your kids
as making sure
that your kid with a disability
has chores.
And so
they have to be obviously
developmentally appropriate chores
because sometimes kids are at different
(11:41):
levels of what they can do.
But as long as they are
constantly kind of being pushed to do
the next level
of what they're capable of,
that's what we need to be doing.
First, he had to pick up his room.
He had to put dishes in the sink,
that sort of thing.
And then it was,
All right,
I got to sleep
and you got to rake leaves.
It got to the point by the time he was,
(12:02):
I think, 12 or 13,
he really wanted to go to a horse
riding camp.
But he was too old.
But they had the position
for the youth helpers.
So we signed him up to be one of the
youth helpers and we called it
horse poop skipping
camp, you know,
and, but it taught him the value of work
and that you get to be somewhere
(12:22):
and interact with people when you work.
And I think the other key for us
was that to prepare
for employment was having him be included
with his peers.
And that's really
where his job story came from,
because all of his friends were starting
to work at the local grocery store.
And so Andy was like, Well,
I want to work there too.
And that's what you do
when you're 16 years old.
(12:44):
So that's where he took off on his bike
when he was 16 years old to go get a job.
He told me on the way home from school
one day he's like, Mom,
I want to go work at Publix.
And I told him,
I going to have to check into it.
And in my head I'm thinking,
I got to check on a job coach.
I got to talk to the school
about how to facilitate that.
(13:05):
And in his head,
he was telling me
what he was going to do that day.
And so while I was making dinner,
he ends up taking off on his bike.
Unbeknownst to me,
I didn't find out until his sister
went to go get him for dinner.
And she's like, Mom, Andy’s not here.
And I went out to the garage
and his bike was gone.
And so and I had two missed
calls on my phone
because I'd been on the phone
with my mom on making dinner
(13:26):
and he said, Mom, I go to Publix,
I go get a job, you come get me.
And I'm like,
Oh no, because it's starting to get dark.
And they didn't want him to ride his bike
home in the dark by himself
because there is a major intersection.
But, you know,
he got on that intersection
probably 50 times
with us as a family
going to the biking trail.
So he knew what he was doing.
And I had friends who were spying on him
(13:48):
because they just saw him on
the way home from work
and they're like,
He did everything
you're supposed
to do crossing the street.
And so he went in the store
and he asked his friend,
How do I get a job?
And they sent him to the front desk
and he just got tripped up
as he was on the kiosk
because he struggles
with reading and writing.
And so that's when he called me for help,
which is totally what you should
do, right when you encounter a challenge.
(14:09):
So I think it was a combination too
of the inclusion,
the fact that he had confidence
in his skills,
that he knew how to get to the store.
And also once he got to the store,
he knew when to ask for help,
because I think it is important
for our kids to know that, too. [Patti] Right.
And he had this expectation that
he was going to do
what his friends were going to do.
[Stephanie] Exactly.
(14:30):
[Patti] As a mom.
What are some of the most
important skills
to prepare your kids to be adults?
[Stephanie] I think it's really important
to make sure
that as we're
trying to
help our kids become adults, that we,
first of all, instill confidence in them,
that they can do things on their own
and that independence.
(14:50):
And so I think that requires
that dignity of risk.
We talk about,
especially with a disability
and saying,
okay, where are the areas
where I can pull back a little bit?
And I mean, it's individual
for each person, right?
Like if I noticed that my kid is,
you know, for example, oh, they're -
they're really competent
now at raking the leaves in the yard.
(15:13):
Well, then maybe then
it's time that you can move on to
maybe you could
help with some other types of yard
work, like pulling weeds and,
and then they can do
the raking on their own.
So I think it's
looking for those opportunities
to pull back as a parent
so that they develop confidence
in those skills
that you've been teaching them.
And I think really important skills
(15:33):
toward
independence are obviously
your transportation as much as possible.
It helps a lot
that Andy could walk
or ride his bike to work,
and biking was a really hard skill
to develop.
I mean, we had
we had days when he was little where,
you know, just teaching him to ride
a tricycle was really challenging.
(15:54):
He was using training
wheels up until the time he was ten.
And we were at a point
where the training wheels were bending
on either side.
And so we were going to do a lose
the train mode camp,
which is,
you know,
another great resource
out there to work on that.
But I knew he was so
close and I said, Andy,
you know,
if you will try it
(16:15):
without the training wheels,
I will take you out for ice cream.
And his friends were in the cul de sac
and he goes, and my friends?
And I say, okay.
And so he not only did he go like,
you know, the eight feet
that I thought he would,
but he did, you know, a
lap around the circle.
And I mean,
my daughters are cheering
because they knew that
(16:35):
the training camp
was going to cost us money.
And they were like,
Andy, you're the hero of our families.
We don't have to pay for
the camp anymore,
but we would gladly would have done it.
But it was kind of
so I was like, you know, I will take you
not only of ice cream,
we will get French fries
and this will be a party
with your friends.
So I but I think it's taking that leap of
(16:55):
can I take those training wheels off?
Right.
And looking for the opportunities
for when we can do it.
[Patti] All right.
Can you describe a time when your
kids surprised you?
[Stephanie] Yes.
And I
think that this
I hope this is helpful
for other parents of kids
with disabilities, too,
because I think
a lot of times
kids with disabilities are not given
the opportunity to be leaders.
And so to me,
(17:16):
one thing that has really surprised me
has been his leadership capacity and
the way it really shocked us
was his senior year of high school.
He had some really positive interactions
in car rider line with the lacrosse coach
and he approached us in the fall
and said, I'd really like
Andy to be on the team.
And, you know, for, like I said, lacrosse
(17:36):
kind of a violent sport.
And he's he'll be fine.
It'll be fine. It's okay.
And he's like
and I wanted to actually get play time
and I wanted to work out with
the boys is like
I wanted to genuinely
be a member of the team.
So I mean, this was an opportunity
he was given
and we appreciated that opportunity.
But then about the fourth game
in, we noticed
that Andy was flipping the coin,
(17:57):
which is what the team
captain does come across.
And there are usually,
I think four or five team captains.
And we said,
why isn't he on the field
flipping the coin?
And they said, Oh, well,
he said, he's a team captain now.
And instead, really,
it's like, is that okay with you guys?
And one of his
best friends from childhood was the
(18:18):
like the main team captain,
and he's like, yeah, you know, you
he wants to do it.
And then a little later in the season,
we would hear the kids chanting,
Woodstock, Woodstock, Andy.
And we didn't know why
they were doing this in their huddle
until the senior banquet.
And at the senior banquet
(18:38):
they said, okay, Andy, do it.
And he would say, Who's your team?
They say, Woodstock.
Who's going to win Woodstock?
Who's your team?
Captain Andy.
But at the senior banquet
he said, Who's your coach?
And they said, Andy.
And that was when Andy
named himself
a coach, and he's been coaching
now for three years.
But we have to give our kids
(18:59):
the opportunity to be leaders or to shine
in whatever way it is
that they have the capacity to do right
and to give them that opportunity
to shock us,
because I had no idea
you got that in him.
And it was so fun to see
it happen right in.
[Patti] Those teammates are still his friends.
I mean, those are some really important
relationships in his life. [Stephanie] Yeah.
(19:20):
[Patti] What is one thing
you are most proud of your child
with Down Syndrome -
Andy -
that has nothing to do
with accomplishing a milestone?
[Stephanie] This is actually a question
that was asked to me
when I was on a parent panel
at a conference,
and I loved how it made me think
because I think so
often, like I said earlier,
we gauge, oh,
you know, we've really made it
when we've hit this milestone.
(19:41):
But there are things about our kids
character
that has nothing to do with any of that
that really can
make us very proud of who they are
and the moment that came to me
was when we were at a basketball,
my daughter's basketball game.
And she was probably,
I think, third grade at the time.
And she ended up
bumping into another girl
(20:02):
and falling on the court.
And you could hear her like the crack
when her head ricocheted off
it, off the floor.
And it was really scary.
And before anyone could do
anything,
I can't believe I cry
every time I call it that.
Andy, jump down to bleachers.
And he didn't care
about the rules of the game
(20:22):
and he just scooped her up.
And I loved that he had that
just gut reaction
of taking care of somebody he loves
and he didn't care about the rules.
You know,
I think a lot of times
we also looking at the court were like,
oh, can I jump down if,
you know,
how is this going to affect the play?
He didn't care.
(20:42):
And it was like the most important thing
was taking care of his person.
And I love that.
[Patti] And I assume everyone's okay now.
[Stephanie] Oh, yeah.
And actually, she was totally fine,
but it just sounded really bad.
[Patti] All right.
So genetic counseling
is often offered after the prenatal test
when families
find out if their child
is likely to have Down syndrome.
(21:04):
Down syndrome
genetic testing has changed so much
even in the last ten years.
So tell me where we are.
[Stephanie] I mean,
first of all, we've
had a lot of developments
in the testing itself.
And there, there are blood tests now
that have greater accuracy
than previous tests,
although there are still
(21:25):
opportunities for false
negatives and false positives.
But by and large,
they are more accurate than
the previous tests have been.
And so families are getting information
about a possible diagnosis
earlier in pregnancy.
And I think
one of my first concerns with that
is that a lot of them aren't
getting genetic counseling
because it's happening so early
and the results are being delivered
(21:45):
maybe by an OB
or a family practitioner
who doesn't have the level
of training
about disability
that a genetic counselor would.
But then also in we are finding in
some of the
research that we've done of patient
diagnosis experiences that,
you know,
there has been progress
among genetic counselors
(22:07):
with providing like
information about national
and local advocacy organizations
and some of the
social outcomes
and providing some printed resources.
But we are
we're still seeing
that it's not happening as globally as
we would like to see it happening,
especially by leaders
in those medical communities.
(22:27):
You know, they're really on board.
Let's make sure that,
you know, families are getting
that full spectrum of information
because families don't want to just know
a list of medical issues.
They want to know what life is like.
And so I think that while there has been
a measure of progress there, still it's
there's still a ways to go for it
in order for it to be universal,
(22:48):
because we are still hearing some
pretty negative
biased diagnosis experiences.
And I would say
it happens even more often
when it's a provider
who has not had the level
of training of a genetic counselor,
but it still happens all around.
[Patti] So what are some ways
people in our community,
including medical providers,
can familiarize themselves
(23:09):
with intellectual disabilities,
including Down's syndrome?
[Stephanie] I think there are a number
of different ways.
I think, first of all,
we need more training
when people are in school.
We need to make sure that they're
getting training on
how to sensitively deliver a diagnosis,
which means things like Don't say
I'm sorry
and assume that it's bad news, right?
Because that's a bias
that we're injecting
into a perception about disability.
(23:30):
If you are a deaf person
and you
take a lot of pride in your culture,
finding out about that
your child is deaf, is not bad news
in many ways.
It's a connection
you have that you might be excited about.
Right.
And so I think that you have to be
I think clinicians
need to understand
how to sensitively deliver a diagnosis,
(23:50):
but also that other component of
disability being an identity
and not an outcome.
And I think there's a whole civil right
social justice component
that needs to be included
not only in medical education
but in public education.
I mean, we talk about
civil rights movements,
(24:10):
which are really important.
And I think a lot of times
disability is left
out of that conversation.
And I think that it needs to be included
more often.
And then I think also
if medical providers
can get involved in advocacy
organizations
and also have parent panels or
and panels of individuals
with disabilities
where they're actually having
those conversations with people
who have lived experience,
(24:30):
that's really important, too. [Patti] Absolutely.
So what is your hope
for genetic counseling in the future?
[Stephanie] I would like
to see
that mandatory disability rights training
and also
how to discuss disability
in the diagnosis that
we had a prenatal disability education
summit in May.
(24:52):
And that was one of the big findings
that came out of that
from leaders
in the medical community
to saying
this really needs to be
more of a mandatory training
rather than something
that is piecemeal happening.
I would also really like to see
medical providers
be advocates
with the disability community
on certain issues like, you know, having,
(25:14):
for example,
health care plans, pay for hearing aids.
You know let's, let's work together
on some of these issues
and also reimbursement
for genetic counseling,
because that's another
big problem, too,
is that we don't have
universal coverage for that.
And so I think there are areas
in which we can be
allies and work together,
and I would really like to
see more of that.
(25:36):
[Patti] So equity in health care is something
you are very passionate about.
So tell me what that means to you.
[Stephanie] I think it means
definitely equity and access,
and that requires
a whole host of making
sure systems are fair.
But can you all get
can everybody get the health insurance
they need?
(25:56):
Can everybody get access
to the health care that they need?
I think that is that's one piece of it.
And, you know, with our Center
for Dignity and Health
Care for people with disabilities,
we looked at a number of different areas
in which people
with disabilities
sometimes encounter discrimination.
And that was, you know,
we talked about prenatal testing, covered
(26:16):
mental health,
aging in end of life and organ transplant
and understanding and recognizing
where some of those gaps are happening.
I think that's another key component,
is analyzing those systems
and seeing, hey,
where are we having gaps?
How can we fix it?
How can we make sure
people have their access
to medical treatment?
(26:36):
But I think it's also making sure
that clinicians
better understand
again,
they've got to better
understand disability so that they aren't
making stereotypes
about people or engaging
in discrimination
or perpetuating some of those ideas
when they're discussing disability.
And we had an incident
sort of like this
in our family
(26:58):
where we went to an urgent care because
and he had sat on a pencil,
his sister left in a chair.
And we've been waiting in the room
and we were being triaged.
And then the doctor came in
and said, Hey, you know what he said?
Still, if I try to treat him.
And I said, Yeah, he will.
He's been sitting out here in the
waiting room,
and I think there was an assumption there
(27:19):
that behaviorally he would not be able
to to work with him on that.
The whatever procedure was required,
I have to
I have to give the caveat that he would
the doctor was also not a native
English speaker.
So there were some communication issues
with trying to make sure
we were communicating together.
But he said we
don't treat people like him here.
And so
(27:40):
I didn't know
whether he meant the urgent care.
Don't treat people with puncture wounds
or if he meant
we don't treat people with Down syndrome.
And he told me that we needed to go
to the children's hospital
and we'd already been waiting there
for forever.
And so we actually just
ended up going home
and I took care of it myself.
And I mean, that's not the best outcome
that we want for people.
(28:01):
And what I've since learned, too,
is that
when you're in a situation
like that,
the health facility
should provide you transportation
to the next place.
And I think
and I also followed up
with friends in the medical community
who said, no, of course,
they treat puncture wounds and
urgent care.
He was saying
that they don't treat people
with Down syndrome. And I, I think that
I think there were a lot of assumptions
(28:23):
about what it means
to be a person with Down syndrome
and a lot of stereotypes
that ideally training
and better exposure
to people with disabilities
can help alleviate.
And I think that's
how we get better equity in health care.
[Patti] It's probably less so too close.
What advice
do you have for families
as we celebrate Down
Syndrome Awareness Month?
[Stephanie] I think for me
the key is assuming they belong.
(28:44):
And this came up.
I'm active
in a lot of social media groups
with younger parents,
and a lot of them
were kind of expressing, I,
I feel like I would ask permission
for my kid
to be in a gymnastics class or to,
you know, go to this karate thing.
And my advice to them
(29:04):
was don't ask permission,
assume they belong.
I mean, yes,
we want to set up
the scaffolding in place
so that they're successful. Right.
And sometimes there's
a negotiation involved with that.
But I think we want to put other people
in the position of explaining why - why
they wouldn't belong.
I mean, I think
and I think often when we just assume
(29:25):
they belong, other people roll with it
because they're like, okay, you know,
I'm just going to do that too,
I think, as best as possible.
And it's hard when you're a new parent,
but if we can convey that confidence
that I am
I kid belongs anywhere
that that or anybody else's,
then hopefully other people will
kind of just follow our lead.
(29:46):
[Patti] That's fabulous.
All right.
Well, from one mediocre
mom to another,
I thank you for your time.
Thank you all for listening. [Stephanie] Thank you.
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