Episode Transcript
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Cassy (00:07):
Hi, and welcome to the South Central PA
mom, Fireflies and Whoopee Pie podcast where
we discuss motherhood, local events andeverything in between right here in south
central PA.
So sit back, grab a coffee a while and settle
in for the show.
You. Hello.
(00:28):
Hello and welcome back everyone.
Hope you've been having a good week today.
I want to talk about down syndrome.
This week we have on the 21st, March 21 isWorld Down Syndrome Day.
And for anyone who is not familiar, I am themom to six kids and one of them, my eleven
(00:49):
year old son, does have down syndrome.
So this is something that is definitely a
personal, I don't want to say issue, but it'ssomething that is important to me and to our
family.
And I think it's important for people to learn
some more about it also, because I can sayfrom my own experience and then just from
(01:13):
seeing what's going on in the world, ableismand ignorance and misunderstandings when it
comes to disability are still a very bigproblem.
So I hope you'll tune in with us a little bitand hopefully learn a few things.
So I'm going to start off and talk a littlebit about our story.
(01:36):
My husband was in the marine Corps, and whilehe was still on active duty, we got pregnant
with our second child.
And at that time he had just come back from a
deployment in Afghanistan and we already knewhe was going to be deploying again soon, back
(01:58):
to Afghanistan for the second time and gotknow it was fine.
We knew right away just from the timing he wasnot going to be home for the birth.
Wasn't the best news in the world, but whenyou're a military family, it's just one of
(02:20):
those things, you know, might happen and itknow, okay, it's fine.
We'll deal with it.
So we went for all of our checkups and
everything in the first trimester.
And Tricare would pay for an ultrasound if you
(02:43):
got what is called the nucle translucencyscreening.
So what this is, is an ultrasound and a bloodtest.
The two of them together are the screening,and in the ultrasound they measure the
thickness of the baby's neck.
And then that, plus the blood test, they put
(03:05):
those together to give you essentially, whatare ods of if your child has down syndrome or
not.
I did it because I wanted the ultrasound.
I just wanted to be able to see the baby.
And so I was like, yeah, let's do it.
It never even crossed my mind that it mightcome back positive, and it did.
(03:31):
And this is something that I just want topoint out.
A lot of people I have heard from, otherpeople who have heard this firsthand, or
people that have heard about my story.
For example, I was still pregnant, and they
would say, oh, well, those tests, I got toldthey're positive all the time, and it turned
(03:51):
out to be wrong.
I think that this might be why a lot of these
stories get circulated, because it's not adiagnostic test.
A lot of the screenings, and that includes theblood tests that are now, they're advertised
as being 100% accurate.
They're not.
These are not diagnostic.
(04:12):
They are screening tools.
They are meant to essentially help you decideif you want to get a diagnostic test.
So it comes back positive.
But that just means you have higher ODs.
It's not actually, yes, your baby has downsyndrome.
So in my case, the ODS were one in six, and wehad to decide what we wanted to do.
(04:35):
And ultimately, I opted to get theamniocentesis done.
Mostly it was because I just felt like Ididn't want to go through the rest of the
pregnancy with this hanging over my head.
Is he going to have down syndrome?
Is he not?I needed to know.
(04:59):
So we agreed to get the amnio.
And an amniocentesis is the only diagnostic
test during pregnancy.
There is also the CVs that you can do.
But again, this is a screening.
It is a more accurate screening, just like the
(05:21):
blood tests, but the only actual diagnostictest is an amnio.
So we went to go and we were referred to amaternal fetal medicine specialist.
(05:42):
And not long after we got all of thatarranged, my husband deployed.
It was New Year's day, 2012.
Two days later, I got the amnio done.
I was super afraid.
Oh, my gosh, I was so scared because I had
heard all of these horror stories about howpainful getting an amniocentesis is.
(06:06):
I heard that it burns when they're withdrawingthe fluid, and it's like excruciating and
horrible and blah, blah, blah.
So for anyone who might be listening, who
might one day need to have an amnio, I'm hereto tell you it's not that bad.
So you can rest your mind at ease on thatpoint.
(06:27):
I mean, it's not, like, fun, but it was notexcruciatingly painful.
I just kind of looked at the ceiling, andmostly it felt like pressure, and that was it.
And it took a few seconds.
It didn't take long.
It wasn't like a long procedure.
They just literally, they take the needle,
they put it in your stomach, and they pull itout less than a minute, and it wasn't really
(06:49):
that bad.
And they did expedited testing for me and
within a few days.
So just in case anyone is curious how quickly
all of this happened, my husband, he deployedon the Sunday.
I had the amnio testing done on a Tuesday andFriday.
They called me.
(07:10):
And when the nurse called, she asked me to
hold for the doctor.
And that right there is when I knew it was
going to be positive, because if it wasnegative, she would have just said, oh, it's
negative.
So I knew that it was going to be positive.
And so the doctor got on the phone and he saidthat the results came back male, positive for
(07:37):
trisme 21.
Trisme 21 is a clinical term for down
syndrome.
And so that was how we found out that my son
was going to have down syndrome.
And my husband was at Afghanistan and I was
all alone at the time.
It was definitely just this terrifying,
(08:00):
traumatizing thing.
I ride literally for days.
I was near hysterical and just, I was soscared and I felt guilty for being scared.
I felt guilty for being sad.
And it took a while for me to come to some
(08:22):
level of acceptance.
I think it took a couple of weeks.
I stopped crying after a couple of days.
But I came to a point where it was like, you
know what?This was going to be okay.
And fast forward to June.
My husband was still in Afghanistan and so he
was able to be there for the birth throughZoom.
(08:45):
And we had Wyatt and everything's fine now.
Fast forward.
We have an eleven year old and he has downsyndrome and it's fine.
A lot of my reaction, I fully believe, isbecause I never knew anyone with down syndrome
(09:06):
growing up.
I'd never even met anyone with down syndrome
until I had Wyatt.
Wyatt, my son, is literally the first person I
ever met with down syndrome.
Like, literally he came out of my body and I
met someone with down syndrome.
We had a best buddies program at my high
(09:27):
school, but I never saw them.
They must have been there because otherwise we
wouldn't have had that program, right?Or maybe not people with down syndrome, but
other people with intellectual disabilities.
I never met anyone like that.
They weren't walking around in the hallways.
I never saw anyone.
(09:47):
They never interacted with us.
I never came across anyone.
So the only picture you have is what you seein our cultural mindset of what disability is.
And that is very negative.
(10:10):
And so that formed my reaction.
And that's part of what I wanted to talk abouttoday, is why do we see disability as
something so bad?Even now, all these years later, there's still
things that you have to get used to as aparent of a child with disabilities,
(10:34):
especially a child with intellectualdisabilities.
You always hear in the news about thesepeople.
Some of us, my friends that are down syndromemoms, will joke about the rock stars, the ones
who are reading super early or, oh, they'reriding a bike and they're only six years old,
(10:56):
and the ones that are running marathons andstarting businesses and doing all of these
amazing things.
And what about the ones who aren't the rock
stars in the down syndrome community?And that was something that I kind of
struggled with as I dealt with Wyatt gettingolder.
(11:18):
And you start to see, okay, well, my son hasthis intellectual disability, and you spend
all this time being told, my kid with downsyndrome can do anything, and this is the.
To have a child with a disability becausethings are so much better.
(11:39):
And all of that is true.
I'm not saying it's not true.
But then you also have to realize that justlike everyone else in the world, people with
down syndrome have different skills andabilities.
Some people are going to be better at somethings than others.
Some people are worse at some things.
Some people are smarter than other people.
(12:02):
I am obviously smarter than some people in theworld, and there are obviously other people
who are much, much smarter than I am.
Right.
The same thing happens for people with downsyndrome.
So you come to this point, or at least I cameto this point, where I was grappling with,
(12:23):
what if my kid is not one of these rock stars?What if he does have to live with us the rest
of his life?What if he does never have the ability to be
independent?Independent.
And here's where I'm going with this.
I kind of had this brainwave of, what if he's
(12:44):
never independent?Really?
Is that the worst thing that I'm worriedabout?
Like, okay, so he lives with us.
Is that the worst thing that I have to deal
with in my life is that my son might live withme?
Okay.
I think that that's part of the problem when
we talk about disability.
(13:08):
We have this mindset in the United States and
probably a lot of industrialized nations thateveryone has to be the best at everything.
You have to accomplish something.
Your life is not worthwhile unless you have to
hustle and do the best and get a promotion,and you've got to go to college, and you've
(13:30):
got to make the most money as you can, and youhave to buy a house, and God knows you can't
get married and have kids until you have ahouse.
And the nice car and everything in your lifeis perfect, and blah, blah, blah.
That's toxic even for your neurotypicalpeople.
But it's also coloring how we see people whohave disabilities, because a lot of people,
(13:54):
especially with developmental or intellectualdisabilities, they may not ever have the
ability to do those things.
And our response should be, so what?
But it's not.
Because in this hustle culture, we have
(14:15):
someone's worth is essentially defined by whatthey can achieve and what they can accomplish.
And it's so sad if you have a child that hasto live with them for the rest of your life,
right?It's, like, considered just this horrible fate
when it shouldn't be.
(14:36):
It's okay.
And that's not to say that it's not hard,especially depending on the person's
neurodivergence.
There are some people.
It can be very difficult.
And that's a whole other conversation about
the better need for support in this countryfor families that have disabilities.
But ultimately, the point here is that we haveto, I think, change the way we look at these
(15:02):
things.
It's okay if my son lives with me for the rest
of his life.
I've come to realize that it's not a big deal.
And despite that, there is still theexpectation in the world, just generally
(15:22):
speaking, that people with down syndrome andother disabilities are just not capable, even
though they are.
More than ever, there is this mindset that
people with down syndrome are.
(15:44):
I like to refer to it as, like, little angel
puppies.
I will meet people and they will tell me, oh,
well, you're so lucky, because people withdown syndrome, they're just little angels.
They're happy all the time.
And when you picture someone with down
syndrome, I guess that's the stereotype,right?
It's just this happy, loving person that loveseveryone and just loves to make everyone else
(16:08):
happy and loves to give hugs, and people willthink, oh, well, that's a positive
representation, right?Well, I mean, no, it's not, because people
with down syndrome experience the full rangeof emotions just like everyone else.
They have the same human experience aseveryone else.
And I can tell you right now that my son isnot always happy.
(16:32):
He gets angry and throws things and pushes andhits his siblings, just like all the rest of
them do.
And sometimes he's happy, and sometimes he's
sad, and sometimes he's excited or tired orjust like all the rest of us.
And that's something that gets lost when youdescribe someone like that, like this little
(16:53):
angel puppy who is just there to make everyonehappy.
And is all full of love.
And that's it.
That's all they do.
That's all they can do.
And not only does it deprive them of theirhuman experience and of the emotions that all
of us have, it also kind of infantilizes them.
People with down syndrome, particularly
(17:14):
adults, are viewed as like they're a childalways, no matter what.
It doesn't matter how old they are or whattheir experiences are, people see down
syndrome because it's a visible disability.
And they immediately make these assumptions
(17:36):
that, well, they can't have a drink or theycan't work this job or they can't get married
or anything else.
They are treated as if they are a child even
though they're an adult.
This happens in the medical sphere.
There's a lot of controversy right now with alot of parents that are bringing this up more
(17:59):
and adults with down syndrome self advocatestalking about how, for example, they go to see
doctors and the doctor will speak to theirparents and not to the person with down
syndrome themselves.
So they'll ask a question, oh, well, what
brings your child in today and what's theirmedical history?
And on and on, instead of talking to theperson themselves, there's just this
(18:23):
assumption that they're a child forever andever and ever and they're not an adult and
there's not a cultural assumption that they'recapable of doing things.
That leads me to another thing I wanted tospotlight, and that is the world Down Syndrome
Day ad PSA, whatever you want to call it, fromcore down, which is an italian down syndrome
(18:46):
organization.
And it's called assume that I can.
And it's fantastic.
And it is narrated by an actress with down
syndrome.
And it's amazing.
It's been getting applauded so much byeveryone in the down syndrome community, and I
am going to play that for you right now.
So I hope that you're able to listen and kind
(19:08):
of get it even though you can't see the video.
I'll make sure to include it in the show
notes, but it makes a lot of really goodpoints.
So here we go.
Coor Down Ad: (19:24):
Pardonder.
You assume that I cannot drink the margarita,
so you don't serve me a margarita.
I don't drink a margarita.
Your assumption becomes reality and parrot.
You assume that I cannot live on my own, so
you don't encourage me to live on my own, so Idon't live on my own coke.
You assume that I cannot hit harder, so youdon't train me as you harder.
(19:47):
That's why I don't do harder, teacher.
You assume that I cannot learn Shakespeare, so
you don't teach me Shakespeare.
So I don't learn Shakespeare.
Ei, ei o. Ahead.
If all your assumptions to unreality, then the
state nothing drank on my belita lit up.
(20:18):
This is like hips were so very ******* sex
here.
You assume I can't square, right, have sight
that I could be on stage as soon as I can, somaybe I will.
Cassy (20:52):
It. Yeah, so that's it.
I think it's a really powerful ad.
It's hard, I think, for a lot of peoplebecause again, especially our generation, we
weren't raised with people with down syndrome,right?
So we don't have this knowledge firsthand, andso we have the stereotype or just kind of this
(21:23):
distant vision of what people with downsyndrome are like, when in reality it's not
the truth.
And assumptions do become reality.
And that is not just about individually.
(21:44):
It's also culturally like they mentioned, it's
on all of us, the people that just youinteract with in and around the world.
She mentions the bartender and the teacher andher coach.
You go to a gym and maybe the personal trainerthere just assumes, oh, well, this person,
(22:05):
they can't do that much, so I'm not going topush them that hard.
Or the teacher, oh, well, they're just personwith down syndrome, they're intellectually
disabled.
How much can they really do when it becomes a
self fulfilling prophecy?As they point out in this ad, no one works
harder to give them the opportunity, sotherefore it doesn't happen.
(22:33):
So what do we have as the reality for downsyndrome today, if we're talking about what it
is and what it means and myths and truths andthings like that?
So I mentioned that trizamy 21 is the clinicalname, and that is because down syndrome, if
(22:55):
you're not familiar, is when a person has anextra copy of the 21st chromosome.
We all have 46 chromosomes, and for peoplewith down syndrome they have 47.
The way that the chromosomes work is there are23 chromosomes and you have two copies of each
one.
(23:15):
For down syndrome, you have the 21st
chromosome, there is an extra one, so that'strizamy, three of them, 21.
It does have a higher risk the older you get.
But the majority of people with down syndrome
are born to younger mothers.
I was in my 20s.
(23:36):
It's not like, oh, well, I'm 22 and I'm notgoing to have a child with down syndrome.
I mean, you can, you might, you never know.
It's not like this only happens to old women,
it happens to everyone.
It occurs across all races, economic levels.
(23:58):
You're only old or white or poor, whatever.
Down syndrome occurs everywhere among all
people.
Yes, there are increased risks, health risks,
which is one of the things that worried me somuch when I first got the diagnosis.
(24:19):
But one of the things that is really importantto remember right now is that virtually all of
these are treatable today anyway.
That certainly wasn't the case in the past for
a multitude of reasons.
One is that medicine has just, in general,
advanced.
(24:39):
So now we have more that is able to be done
about various heart defects, for example, orwhat have you.
The other issue is that in years past, rightup until the 80s, it was perfectly legal for a
parent to decide, yeah, I don't want to treatmy child with down syndrome.
(25:05):
Oh, I just had birth, and it's a baby withdown syndrome, and I don't really want a kid
with down syndrome.
And they have a treatable health condition,
but I don't want them.
So I'm just going to deny that and they will
die.
And that sounds horrible, but again, I will
leave it in the show notes.
It is 100% true that happened.
(25:26):
It was common for a lot of people to believethat down syndrome was essentially a fate
worse than death.
And so the kinder thing, even though there
were available medical interventions, was todo nothing and to just let the baby die.
So you have a couple of combined things, isthat medicine has advanced one, and two, you
(25:46):
have that it is no longer, most of the time,allowed for doctors or parents to deny a child
medical treatment because their life is justseen as not worth living.
So those two things combined, you have fromthe now, people with down syndrome, their life
(26:08):
expectancy has more than doubled.
Now it's pretty much about the same as your
typical adults.
So when you hear all of these scary things
about people with down syndrome have all ofthese health problems, I mean, they're at
higher risk for them, but they're also largelytreatable.
(26:28):
And some of them that are really scary, likecancer, you hear, okay, well, people with down
syndrome, children, specifically up to the agefive, are at a higher risk for getting
leukemia.
This is true.
They are also, however, much more likely tosurvive leukemia.
Much more likely to survive leukemia.
(26:50):
So much so that scientists are actually doing
research to find out why it is that childrenwith down syndrome are more likely to survive.
Because the thought there is that if they canfigure that out, they can use it as a
treatment for other people.
And while people with down syndrome are more
likely to get leukemia, they're also lesslikely to get solid tumor cancers, which is
(27:12):
another thing that scientists are trying tofigure out, because, again, that could unlock
treatment for people who don't have downsyndrome.
So there's some cool things there.
Down syndrome is not rare.
It is actually the most commonly occurringchromosomal condition.
(27:32):
You have, the intellectual disability, andthat is true, but it is mild to moderate.
It is not extreme.
It's not like they can't learn.
People with down syndrome can learn andaccomplish things just like anyone else.
People with down syndrome are able to bemembers of their community and participate in
(27:53):
anything from community events to, as wasmentioned in the core down attic, going to a
bar and having a drink and going to a club ora party.
They're able to work, they are able to getmarried.
And there's just so much that people with downsyndrome are capable of.
(28:16):
Even though people don't see it a lot of thetime, we still don't really know why down
syndrome occurs.
That's something that is still being
discovered or researched, I should say.
(28:39):
But ultimately, it is something that is not
negative.
It's not a bad thing.
We all know, I think, and have come to thisunderstanding that the world is a better place
with people that are different from us.
Right?
(28:59):
Especially when it comes to, say, race.
There is a much better cultural understanding
that it's a good thing to have lots ofdiversity, and it is.
That goes for disability also, right?So down syndrome is not anything to be scared
(29:20):
of.
It's not a negative, it's not a bad thing.
It's not something to be sorry for.
So please, for the love of all that is holy,
if you have a friend or family member thatsays, oh, I just found out that my baby has
down syndrome, don't say I'm sorry.
Please don't say I'm sorry.
Say, congratulations.
All of us here in the down syndrome community
(29:41):
are begging you, don't say I'm sorry.
It's still a happy occasion.
And if you have a child in your kids classthat has down syndrome, invite them to your
birthday parties.
Encourage your friend to be friends, your kid
to be friends with them, include them, and itwill make the world a better place.
(30:06):
I know that sounds kind of trite and cliched,but it's true, because, one, it's going to
promote that acceptance of people who aredifferent, and two, each generation that comes
about and they're interacting with people whoare different from them, whether it's a
different race, different abilities, differentreligions, that generation is going to grow
(30:29):
up, and suddenly people who are a differentrace or a different ability or a different
religion are not people to be feared.
And that's what we need to make a difference
in this world.
So if you are able to reach out, reach out to
those families that you know and have themover so that your kids can be around them.
(30:52):
And if you find out you're having a kid withdown syndrome yourself, feel free to reach
out.
I am more than happy to talk to anyone who
needs that help to get through it.
And don't be scared.
It's World Down Syndrome day coming up on thisThursday. 321 obviously because it tries me 21
(31:13):
321 ha for anyone who is listening who mightwant to come celebrate with us, there is going
to be a celebration at trogues and Hershey, sohopefully you'll stop by and have a good time
with us.
And for the meantime, that's it for us today.
(31:33):
I hope you learned something.
I hope that you enjoyed this week's episode.
Make sure you tune in next week.
That's our episode for this week.
New episodes will drop every Monday.
Make sure to subscribe so you never miss out.
(31:54):
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