visual graphic of a person’s chromosomes
a karyotype and it would be my sons
Everett my first child for the layperson
a karyotype is a visual graphic of a
person’s chromosomes most of us have 46
chromosomes persons with trisomy 21 have
47 chromosomes because they have a third
copy of the 21st chromosome and that
third copy affects every cell of their
body in mosaic Down syndrome that third
copy only affects some of the cells in
that person’s body and with a person
with translocation Down syndrome that
third copy attaches itself differently
to different chromosomes Down syndrome
is interesting because it is a syndrome
it’s not a disease it’s not a condition
you can’t catch it it’s not diagnoseable
by symptoms its diagnoseable by a
collection of markers sometimes those
markers are physical markers external
some they’re sometimes they’re internal
the karyotype that’s the definitive
marker I’ll never forget the day Everett
was born he was born five weeks early
which was quite a shock to us he was
also born with extra genetic material
which was quite a shock to us ever got a
post natal diagnosis which means he was
diagnosed after he was born based on his
appearance I’ll never forget what my
doctor said she said I think your son
has Down syndrome he has quite a few
markers I’m not entirely sure but I
think he has Down syndrome I’m going to
order a karyotype and the karyotype will
tell us whether or not he has Down
syndrome and your pediatrician can give
you more information I’ve been wrong
before I think he has Down syndrome and
then she hugged me and she left and went
delivered more babies I’m assuming she
was very compassionate but when she left
the compassion left with her and there i
sat stunned with information
that was going to change the course of
my life and in those precious moments a
nurse decided it was it was time for her
to tell me very abruptly your baby has
downs I’ve never seen this many markers
and a baby not have downs your baby has
downs your doctor is giving you false
hope he has downs and I’m telling you
because I would want to know if I could
travel back in time I would shout at the
top of my lungs well I don’t want to
know I just wanted to enjoy my new baby
I just wanted to enjoy being a new
parent but those moments were robbed for
me with those callous words your baby
has downs and then she felt it was
necessary to inform me don’t even try to
breastfeed downs babies can’t breastfeed
I wouldn’t even try if I were you which
is false babies with Down syndrome can’t
they’re like any other baby some babies
breastfeed really well some struggle
with it and then she decided to
exclaimed my entire family that we chose
the name Everett it’s my son’s name
because we were saving a better name our
favorite name for our next baby nice
really hurtful actually and in the
aftermath of all of this this horrific
diagnosis experienced at some point I
tried to wrap my head around everything
and big questions started forming the
first of which was what reality is this
I didn’t choose this reality a reality
where someone labels and limits my child
moments after he’s born after he enters
this world downs babies can’t breastfeed
and better yet how has this reality come
to be how are we talking about Down
syndrome that would lead this person to
believe that it’s okay to say things
like that so I’m a researcher and what
we do as researchers is when we form big
questions we delve into the information
and that’s what I did I dove headfirst
into every piece of information I could
find about Down syndrome I knew nothing
about Down syndrome prior to this moment
so as I was researching and gathering
information several themes surfaced
several I’ve narrowed it down to
– for today but I got quite a reality
check by working through this
information research theme one I was
lucky to walk out of the hospital with
Everett that day in the 1930s the 1940s
50s I would have been encouraged to
institutionalize him that was common
practice during that time because it was
assumed downs babies don’t have higher
order needs that can be met they can’t
live up to their full potential so let’s
push them into the hidden margins of
society institutions and their basic
needs will be met but they can’t
infringe on the quality of life for
their family members and that was common
practice at the time those were the
assumptions driving what people thought
about Down syndrome and that saddened me
to know that that was a part of
Everett’s history
it’s saddened me but I kept doing
research and I uncovered some more
information about Down syndrome I
discovered the ad a the Americans with
Disabilities Act it was formed in 1990
it provides protection for individuals
with disabilities from discrimination
and ensures equal opportunity to a lot
of resources including our public school
systems I’m a child of the 80s and so
when I sat in elementary school
classrooms I didn’t sit next to students
who were differently abled I didn’t sit
next to a student with Down syndrome to
my detriment I wish I would have I think
it would have made me a better person so
I assumed this was going to be Everett’s
reality he would be segregated into
special education there were special ed
gen ed the two worlds did not meet but
that’s not the case in today’s day and
age it’s called inclusion a lot of
school systems are providing special
education services but they’re also
pushing for kids with Down’s syndrome
and other differently abled children to
sit into these mainstream classrooms
right next to their typically developing
peers and guess what they’re learning
they’re learning to read they’re
learning to write they’re learning math
how to socialize how to communicate with
other people they’re learning how to
live in this world and they’re typically
developing peers they’re learning some
very valuable lessons as well so I was
very happy to learn that things had
changed and we now see kids of all walks
of life sitting together side-by-side
learning and a lot of our public
education systems a lot of our schools
however there’s this third research
theme as I was digging into information
through discussion forums that’s another
way one can gather information I joined
a lot of Mom’s groups and these moms had
children with Down syndrome who were my
child’s age a lot of them were sharing
stories very similar to mine
they had horrific diagnosis experiences
where people were callous and
insensitive when they conveyed that
information to them which troubled me
that’s scary
a lot of them were also talking a lot
about how the world was responding to
their children with Down syndrome
venting stories where people were moms
were venting about how they felt like
their children were being labeled
strangers were asking them very odd
questions about their children so while
these advances are occurring in our
school systems and in these other arenas
of our lives we’re still being hit with
these outdated questions in these terms
these words about our children I
remember standing in line at a
department store ever it was about three
months old I was buying him some new
baby clothes on sale I was having a
normal moment as a parent that’s what I
craved in those early days I just wanted
to feel like a normal parent and effort
was sitting in his little stroller
playing with some toys it was a really
sweet moment it was interrupted when a
complete stranger tapped me on the
shoulder and I saw the look on her face
and I knew what that patronizing look
meant
something’s coming and I don’t know what
and she blatantly asked the question so
how high-functioning do you think he’s
going to be not hi nice to meet you your
baby’s adorable how high-functioning do
you think he’s going to be and I’m not
very good in moments like that I didn’t
see that question coming so I responded
as I oftentimes do off-the-cuff question
with a question and I said well how
kind of a rude question so you might
want to consider your own level of
functioning as it relates to social
etiquette which is funny and appropriate
but I saw the look on her face she was
stunned and I saw the people around me
and I realized that wasn’t the best way
to respond what did I teach her about
down syndrome did I teach her how great
my kid is did I teach her you know let’s
let’s ask these questions instead let’s
talk this way about Down syndrome
instead no I taught her that I am an
angry tired bitter mother of a child
with a disability and confession
sometimes I am a little bit tired I
never dreamed I’d be teaching the world
about my child
constantly I thought I was going to have
a child
and teach him about the world but that’s
not the case and it exhausts some of us
mom’s research team number four these
questions and these things that were
saying about Down syndrome they’re
leading to certain actions that I don’t
think that we’re aware of there’s this
new invention called early prenatal
testing ever got a postnatal diagnosis
but we are in the minority most people
get a prenatal diagnosis in today’s day
and age and a lot of parents when they
get a prenatal diagnosis for their child
with Down syndrome stems from a blood
test early blood work and one can
determine whether or not the child a mom
is carrying does or does not have Down
syndrome it’s leading to some some
parents who are preparing ahead of time
they have time to think about it and
process the information but it’s also
leading to this decision to selectively
terminate the pregnancy early on now
there’s a lot of research in this area
but it’s new research older streams and
by older I mean 2010-2011 not very old
older research demonstrates that roughly
72 to 90 percent of parents when they
get an early diagnosis of Down syndrome
they choose to terminate their
pregnancies having said that new
research is available that demonstrates
here in the United States that statistic
is most likely much lower it’s really
probably closer to 30% and by talking
about this other statistic over here it
normalizes that decision so I want to be
sure that I talk about both bodies of
research today but regardless
that’s a life-or-death decision because
of that squiggly little third copy of
the 21st chromosome how are we talking
about Down syndrome that is leading
people what are the negative assumptions
about Down syndrome that they’re that
are leading people to make these
decisions I tell people all the time
ever it is really not that different
than his brother who has 46 chromosomes
but that squiggly little third copy of
the 21st chromosome it’s made all the
difference in my life it’s changed me to
the courts changed the way I’ve seen
this I see this world why someone would
want to remove that from their lives it
baffles me and it baffles a lot of other
moms out there I’m not the only one so I
vote let’s start talking about Down
syndrome differently it’s not something
we should label or limit or have
negative assumptions about it’s
something to celebrate
so social constructionism occurs as we
talk we use words to connect with one
another to create a system of shared
meaning and those words are symbolic of
something bigger they create a reality
the way we talk the words we choose in
the way we interact with one another
that is our reality so the question is
how are we socially constructing Down
syndrome what are the words we’re using
I hear the word downs a lot and often
times it sounds like a label I’ve heard
Everett referred to as a Down’s kid a
Down’s baby I was referred to as a
Down’s mom thought that was strange I
don’t have the karyotype to prove it but
I don’t think I have down syndrome
Everett’s been called a down boy it’s a
dog command that’s not how we talk about
our fellow human beings but we label and
we limit it I think what bothers me when
I hear these terms used that way is it’s
almost always followed up with some sort
of outdated assumption Down’s babies
can’t breastfeed Down’s babies are happy
all the time
no and no babies with Down syndrome
sometimes they breastfeed really well
sometimes they don’t I can assure you
they are not happy all of the time that
would make my life a lot easier actually
if that were true but it’s not and so
how are we taught what are we saying how
are we socially constructing Down
syndrome so I’m not the only one who
poses this question there are a lot of
moms out there
and we’re trying to socially construct a
new reality socially construct new
conversations about Down syndrome
we call ourselves rocking moms because
our kids Rock a third copy of that 21st
chromosome and you know we rock as moms
as well but we’re trying to create these
new conversations about Down syndrome
because this is our reality we
oftentimes rely on hashtags to do that
we’re kind of scattered across the globe
so we will create these hashtag
movements to again talk about Down
syndrome in more realistic ways one of
my favorites is hashtag life with DES we
did that on world Down syndrome day in
2015 we all created blog entries that
chronicled an average day and you know
raising a child with Down syndrome and
then we posted these blog entries and
hashtag did you know hashtag life with
DES and I read the responses that people
provided on my own post and the post of
others and everyone kept saying oh wow
you know it’s just like you’re just like
any other parent your your your day
sounds like any other parents day with a
two-year-old like yeah it that that’s
right it’s just an average day our lives
are not that different than your life
down syndrome isn’t bad something to
celebrate we also use we used several
hashtags but hashtag the lucky few is a
popular one and often times we portray
photos of our children
you know maybe sometimes crying throwing
a tantrum we want to present a realistic
picture we want to create a guy next
conversation about Down syndrome that’s
indicative of our reality not this other
reality that people see keep wanting to
impose on us so we also sometimes post
photos of our kids they do have health
concerns that is most of the time part
and parcel with Down syndrome their
health issues related to having that
squiggly little third copy of the 21st
chromosome but again we want something
realistic realistic conversations you
know we’re rocking it as mom’s no doubt
but it’s easy for us to create these
conversations because it’s our kids
they’re the ones that are rocking it
they’re doing amazing things one of it
Everett’s therapists once said to me
there is no better time to be born with
Down syndrome
there are so many medical therapeutic
educational advances in place we’re
discovering now through research and
intervention what are kids true
potential is and it’s amazing they’re
accomplishing their dreams just like any
of us in this room right now Google
entrepreneurs with Down syndrome you’ll
find a host of individuals who own their
own food trucks snow shacks restaurants
designer sock lines clothing boutiques
you name it they’re going out there
they’re taking the world by the horns
and they’re owning it
Google famous people with Down syndrome
they’re accomplishing things most of us
in this room will probably never
accomplish celebrities reality stars
actors in major television series
fashion models walking the New York
runways professional athletes Orchestra
conductors these kids are amazing and
this this is what we moms want to talk
about we don’t want to answer questions
about how high-functioning our child is
or isn’t we just want to talk about how
great they are this is our reality this
is what we’re trying to socially
construct these stories right here so in
conclusion I argue we start using
different language when talking about
Down syndrome let’s create a new
narrative for Down syndrome maybe this
graphic is right maybe we’re the ones
missing something I wish everybody could
wake up to the social media newsfeed
that I wake up to I get to see kids and
adults with Down syndrome at every age
and stage of the game living their lives
to be very fullest and I know you see
these stories too because a lot of you
share them and you tag me in these
stories which is great but make sure
when you’re sharing these stories you’re
sharing the ones that are realistic that
reflects some of the things that we
talked about today and maybe maybe just
go out and invite a real live person
with Down syndrome into your lives I
guarantee you that squiggly little third
copy of the 21st chromosome will make
all the difference in your life just
like it did mine thank you and happy
belated world Down syndrome day [Applause]