Over the last several months I have been learning a little bit about DS and how important the advocacy for acceptance is via my facebook newsfeed. A friend of mine gave birth to a baby with Down Syndrome and she was kind enough to let me ask her some questions. I wanted to find out more about DS, the laws that are being presented to help these people and their families. And, I wanted to help raise awareness.
Tanna is a busy mother of five girls and she kindly took the time to indulge me in my quest for knowledge. Since we don't live close to each other we had to hold this conversation via Facebook private messages. It took us a couple of hours each night for three days to get the answers and information I have put together below. Please forgive us for our casual language and text/internet lingo.
To protect her daughters' privacy, we have used their nicknames.
I hope that if the only thing you take away from this post is that people born with Down Syndrome deserve to be treated equally and with care and respect, then that is all I can ask for.
Me: So, we'll start easy. Tell me about your family!
Tanna: Hashbrown
is about to turn 11 next month, kick butt dancer. Monkeybutt is 8, incredibly
musically inclined. Rorikins is 7, really into cinema. Pickle is 2, loves
dancing and seems really good at languages (good at ASL and starting Spanish). Pepper
is 7 months old, likes sucking her fingers and playing with her Oball and
Mooshka dolls.
Josh is a security analyst for ***company name removed*** and I am a sahm.
Me: Mooshka?
Tanna: They are a brand of doll that Pepper is positively
obsessed with.
Me: How did you find out that Pepper has DS?
Tanna: When she was born the nurse and doctor noticed she
had thick skin on the back of her neck and she was very floppy. They had a pediatrician
come in from the NICU to confirm what they thought was DS and she agreed. So
they ran tests.
To be very honest, I knew the moment I saw her.
The second Josh placed her on my belly I could see her
telltale upturned almond eyes and knew.
Pepper has several of the physical characteristics of
Down Syndrome. So we weren't holding our breath for the blood test results.
Me: I didn't know about the skin on the back of the neck.
What causes that?
I know that the eye shape is a common characteristic. I
guess, do you know what causes the common physical traits?
Tanna: That wily extra chromosome presents itself in many
ways. Such as small ears, large tongues (which is why they often thrust them
out) a palmar crease, the upturned almond eyes, shorter arms and legs and
sandal toe are most popular and easily distinguishable traits.
These are the original characteristics that Dr John
Langdon Down connected when he discovered Down Syndrome.
It wasn't until later on when Dr Jerome Lejune discovered
the cause was the triplicating of the 21st chromosome was what caused those
(and many other) physical characteristics of Down Syndrome.
Sorry if I'm rambling too many facts lol feel free to
holler stop lol
It's amazed me what something as tiny as a chromosome can
do to a person's genetic makeup.
Me: Ohh. That’s interesting because there are different
types of downs, right?
Tanna: Yes, there's nondisjunction, translocation, and
mosaicism.
Me: What does that mean?
Tanna: All of them have the same potential symptoms, but
what makes them different is how the triplication was formed.
Tanna: The typical form is nondisjunction. This is a
simple failure for the pairs to separate evenly during meiosis.
Also known as trisomy-21
It does not run in your family. It is a spontaneous occurrence.
It's common to 90% of people with Downs.
Translocation is when a piece of or whole chromosome
breaks off and attaches to another. This is rare, only occurring about 5% of
the time and is slightly more likely to occur again in a family.
Me: Ohh wow.
Tanna: Mosaicism is the least common. This is when the
triplication doesn't occur in all the cells. So the person is less affected by
the symptoms. Only 1% of people with Down syndrome have this form.
Is that too much? I kind of found that part the most
fascinating.
****Side note. As a lover of facts, there is never too
much********
Me: Interesting that the more rare form is likely to
repeat itself in a family.
Tanna: Especially due the common misconceptions you hear.
Well, when you factor in the fact that most parents will
screen more carefully and likely opt to terminate a pregnancy then sadly, you
know why it's so rare
Fun fact: Pepper was the only child I ever got genetic
screening for lol
She flew right under the radar!
Me: Do you know how often I have heard of false positives
on those tests? I am pro-choice, but I don't even want to imagine how many pregnancies
have been terminated over a false positive.
That's crazy that it wasn't detected. I wonder how many
false negatives there are out there.
Tanna: I don't know, but Pepper was surely meant to be my
baby!
Me: she was!
Tanna: I had almost 20 sonograms during my pregnancy. Not
one of them sent off any red flags.
Me: Did you have any 3d or 4d sonograms?
Tanna: I had 4. 2 for fun and 2 for medical reasons
We got a DVD and a crap ton of pictures.
Me: That's pretty amazing that it went undetected.
Tanna: I did notice her nose was super smooshed (which is
a characteristic as well) but I was told I was being vain <womp, womp>
Honestly, I was upset for an entire hour before I
realized that the timing ended being for the better.
Me: How so?
Tanna: I'm a googler. I would have ruined my peaceful
pregnancy and perfect labor by worrying about something out of my control.
I would have been so obsessed with the wide range of
symptoms and issues we'd face that it would have spoiled those beautiful
moments my family and I shared leading up to Pepper's arrival.
Me: That's ok, in HB's sonograms he looked like a grumpy
old man. He has a birth mark on his forehead where the brow furrows.
Tanna: Bahahaha! Pickle had Walter face too!
Walter from Jeff Dunham, sorry I assume everyone watches
what I do.
Me: Agreed! That's part of why I don't test. I would
worry so much. I am a planner, but the worry would ruin it.
hahaha yes! I know the Walter face. I have been told that
the purple one and I share the same facial expressions.
Tanna: We tested b/c we honestly felt that with 4
previous children we would not be able to handle a special needs child.
Apparently someone felt otherwise lmbo
Me: hahaha apparently so.
Tanna: Honestly, I never knew I had this in me. But the
second I held her, I knew I would move mountains for her.
Me: Of course momma bear!
So, what type does Pepper have?
Tanna: We don't know yet. We have to have that specific
test done. We plan on asking at her next appointment with the genetic
specialist.
We tried asking her original ped but she shot us down. She
was a bitch and we left her practice.
Not just for shooting down that question.
The woman made me cry at one appointment!
Me: what!?!?! That's terrible.
Tanna: She was. I dreaded appts with her. After a month
of disheartening appts twice a week we chose to go elsewhere. We are very happy
with our new ped
While basic care of a child with Downs is not much
different than a "normal" child that doesn't mean that you won't see
discrimination.
I didn't expect to have to really advocate for Pepper
until she was in school or being bullied, but our fight has sadly already
begun.
I very foolishly figured that since I was just a simple
woman who happened to give birth to a child with DS that all doctors would have
a basic understanding of DS.
I was soooo wrong!
Me: Wow, but her ignorance isn't your fault.
Tanna: The hospital closest to us outright told us not to
bring her back since they didn't know how to treat her.
Me: What???
Tanna: One doctor at a different hospital asked us
"how much DS" she had.
We requested a different doctor.
Me: Why did you have to take her in.
Wait, "how much"?
Tanna: Yes, how much!
Me: Oh my. And THEY get paid how much?
******Side note. Seriously, this is a great example of
how self education and second opinions could make a huge difference in your
life. Just because they have a degree it
does not make them out to always be right or actually have any common
sense.***********
Tanna: I said all of it laughed said she has Trisomy 21.
Thinking he was joking. He wrote it down and said he'd have to look into that.
Me: holy shit
Tanna: The next doctor was MUCH wiser and had her
diagnosed and home within an hour.
Me: haha wow
Tanna: But things like that piss me off. Like the more
recent movement to push for Ethan's law.
Me: So, I know she has regular checkups for monitoring
purposes. Have you made more trips to the hospital for sudden or urgent
concerns?
Tanna: Now that she's older we know what is just
"her" and what's an illness.
Before we didn't know how congested was just the narrow
nasal passages of her people or if it was an actual illness.
Me: ohh I see.
Tanna: Narrow nasal passages are a symptom of DS and make
it so that Pepper has almost constant congestion. We use saline spray and the
bulb syringe on her 4-6 times a day. Every. Single. Day.
It took us a while to figure out she does not have the never-ending
cold.
Me: wow. Dedication.
Tanna: when she does get a cold, she get severe reflux
and low oxygen levels. She gets apnea and once turned blue.
We opt for a holistic approach b/c its effective keeps
her immunity higher than if we chose to use medications.
Fun fact: a majority if parents in the DS community
choose holistic healing over meds due to our children’s' compromised immune
systems
Me: ohh wow, a world made for you. Over time her immune system will improve though
right?
Tanna: That depends
Obviously since I avoid the use of antibiotics as much as
possible, her immune system will have a chance to grow stronger. But it will
probably not ever be as strong as mine for example.
Children with DS are genetically more inclined to be like
their families than anyone else. That extra chromosome makes her extra like her
family.
Did that make any sense?
She is less likely to have a recessive gene than her
sisters, if that's any clearer.
Me: yes. That makes sense.
Tanna: Good, I didn't think I explained that right at all
lol.
Pickle looks like her uncle. Pepper looks like me.
Me: So, she's more like you and Josh than other members
of your family.
Tanna: Yes. We thought when she was a newborn that she
would look like other people with DS. But we were told that is not the case.
She has the characteristics of DS but absolutely takes after us (Lord help
her!)
She has Josh's long torso and my oval face shape, blue
eyes and long lashes.
Me: What was the reaction of the family?
Tanna: Well, at first we only told my mom b/c she was
staying with us at the time.
Josh was supposed to tell her before they got to the
hospital, but he couldn’t. So he dropped her off at the room and took the kids
for a tour so I could tell her.
Our family used to help with Special Olympics when I was
in gymnastics so we had experience with DS. Mom took it in stride.
Me: Ohh, well that's wonderful.
********Referring to their experience helping with the Special
Olympics**********
Tanna: Yup
We waited about a month before we told the kids though.
Me: I can understand how hard it was at first to talk
about it.
How did that go?
Tanna: We ordered a book called "We'll Paint the
Octopus Red" which was referred to us. We read the book as a family and
pointed out a few of the differences that they had been asking about. We
explained everything as well as we could and had timed it so we had a visit
from a wonderful board member of the NoVa Down Syndrome Association.
************* To purchase the book here’s a link to it on bn.com **************
She helped us answer the kids' questions and then they
went off to bed and she helped answer ours.
She also brought a goodie bag full of resources and small
gifts for Pepper.
Me: That's really nice that someone came out to you.
Tanna: The birth registrar at the hospital had a daughter
with DS. She hooked us up
It was a HUGE lifeline.
Me: Have you met a lot of fellow DS parents?
Tanna: I have formed many relationship online with other
parents. But I am just now reaching a place where I am emotionally ready to
seek out real life relationships within the community.
Me: Are there meeting groups? Like there are for
breastfeeding support?
Tanna: It may sound strange, but DS is so wildly
different for each individual. While there are certain things that are MORE
common there are still too many differences to end up knowing someone fighting
the same battle? DS isn't like most disabilities where it follows a path or has
a set way of developing. Sometimes it is scary seeing how it has affected
someone's life in person.
Tanna: We are planning in attending our first support
group meeting this coming Sunday.
While I fell right in love with my daughter and accepted
her diagnosis right away, it didn't make it any less scary.
Me: I can see how that would make it hard to bond with
someone in a way.
Tanna: Seeing older children and adults with DS can be
inspiring and uplifting. But it can also be terrifying to think of. I mean, any
parent worries about their child's future. I feel it 10 times worse with Pepper
than I do with the others.
Me: There's a million things that probably went through
your mind. And like you said, there's no path.
Tanna: I used to just sob when I saw adults with DS. Now
I see so much potential. I know I will have to fight for her basic civil
rights. I know we will have to fight for inclusion and I'm ready for that now.
Ignorance is the biggest downfall of the DS stigma.
I was ignorant. Even though I had known teens and older
children who had DS, I still had no idea what they were capable of.
Me: Is there research being conducted for a
"cure" or for a way to prevent DS?
Tanna: Yes. They now have a safer way to test for it (so
more people are likely to get it done) and then they're working on a
controversial shot that when administered early enough in the pregnancy can
correct the way the chromosomes are split. It's kind of a of button issue in
the community these days.
Me: I can imagine. On one hand you love your child
completely and whole heartily, but on the other, you don't want to see them
suffer, physically, mentally, or emotionally.
I wonder what kind of side effects that shot would have
on a baby with a false positive.
Tanna: Exactly.
I am sure that before they find a "cure"
they'll find a more accurate test.
Me: Dare I ask? Had things been different, and your test was accurate and the "cure" was available, or if someone said "we can realign her chromosomes tomorrow", what would you have done or would do?
Tanna: I absolutely love Pepper and the little person she
is today. But without ever knowing how healthy and happy she could be, I would
have chosen the cure.
50% of people with Down Syndrome have heart defects and
GI issues. Why would I want to possibly subject my baby to those?
Me: I think that would probably be a common answer.
Tanna: I will fight for her health and to have the best
possible choices for her well being. Just like any of other child of mine.
Me: speaking of... Let's talk legislation. Tell me about Ethan's law and
the ABLE act.
Tanna: Ethan's law will educate law enforcement in how to
handle situations where a citizen has Down syndrome. Unfortunately the
gentleman in which it was named after died while in police custody due to their
ignorance.
The ABLE act will ensure citizens with DS the ability to
become truly independent and equal adults. As it stands right now Pepper would
not be able to have a bank account. We would not be able to leave her any money
or property and such.
Me: what? I am going to have to do some research on that.
Seriously?
**********My Google search resulted in this Washingtonpost.com article Such a
terrible story.********
Tanna: People with DS have low muscle tone. They restrained
Ethan in a typical hands behind his back position until they felt he was
subdued enough to move to the car. While restrained in that position he
suffocated since his body isn't strong enough to handle being in that position.
Me: omg. That's terrible.
Tanna: It was a tragic accident, all due to ignorance,
plain and simple. I am glad to have already heard of police having taken
classes and seeking education on better ways to handle those situations.
What's terrible is how archaic and sad the laws are for
people with DS.
Me: I guess there is a positive to come from it.
Is DS considered a disease, disorder, or... something
else?
Tanna: It is considered a genetic disorder, or
abnormality.
Me: gotcha
Tanna: I have just been informed that it is apparently a
chromosomal condition. Josh schooled me lol
Me: When I was younger a family friend had a daughter
that was 16 or so, but she had DS. My mom explained to us that she was a
teenager with the mental capacity of a 4 year old.
My mom wasn’t being mean. I think she was either going
off of what she "knew" or thought that was the best way to explain it.
Now, I realize that wasn't really the case.
Or can it affect people in such ways that some may not be
capable of caring for themselves independently.
Tanna: Remember earlier how I mentioned that it affects
each individual in vastly different ways? Mental capacity is one of them.
Me: Gotcha. I figured as much, but wasn't sure. My
experience is limited and from like 15 years ago.
Tanna: A lot of it stems from how much work you put into
them.
Me: Do you think that if her parents had worked with her
like you work with Pepper or had the knowledge you have now, that she maybe her
outcome could have been different?
ohh lol well you answered my question.
Tanna: Newer studies prove that the earlier you begin
working with your child the greater likelihood of them growing to be more
independent and successful.
But this is true only to an extent.
Me: Do you attribute the notion of "knowledge is
power" (duh) to the new expected life span?
Tanna: People with DS are more prone to autism, ADD and
ADHD. This would make it harder for them to reach their educational goals. Also
mental developmental delays are common as well.
All because one little chromosome decides to roam around a little. It's
amazing the huge affect something so small has on things.
Me: It really is. It's sort of mind blowing.
I wonder what causes it to happen in the first place.
Tanna: Absolutely! Now there are so many ways to detect
things. But the main reason for the longer life span is that babies and
children are no longer institutionalized for having DS.
Also there's Early Intervention which is a government
program set up to help from day one.
Me: It's amazing how far society and science have come
and yet how far we have to go.
What does that entail?
Tanna: They facilitate all kinds of help to ensure a
better outcome for children. Unfortunately that program only lasts until age 3.
Me: And then what?
Tanna: A case worker will come to your house. They will
review your baby's medical charts and decide on the services your baby needs.
Then the specialists come to visit until the goals are
met and new goals are made.
Oh, after age 3?
Me: That's really fantastic.
and yes lol
Tanna: There are other programs, but from what I gather
that's when the real struggle begins. Parents have to fight for inclusion and
closely monitor their children's schooling b/c often fall to the wayside.
I know a lot of parents are pushing for cameras in the special
ed classrooms due to some horrible issues coming up lately
A lot of children with Ds are nonverbal and are unable to
tell on laziness or cruelty.
Me: This was actually a topic that came up in the group
recently (sparked by me of course).
What are your thoughts?
We had both sides be brought up. Protecting the children
from abuse and neglect.
Tanna: I wholeheartedly believe that those cameras would
protect the teachers AND the students.
Me: but also protecting the teachers as some special
needs children have violent tendencies.
Not to protect retaliation, but to show that proper actions
were taken to subdue.
Tanna: I really think that they should be in all
classrooms not just special ed, but ESPECIALLY there. Kids who can't speak need
to have protection and teachers need to feel safe dealing with children who can
fly off the handle.
The only people who don't want them there are the ones
who need to hide things IMO (In My Opinion).
Me: I am a little torn on having them in all classrooms.
However, I have cameras on me at all times at work and you do forget about
them. I don't even want to know how many times I've picked a wedgie or fussed
with my bra on camera. lol
Tanna: Meh, small transgressions lol
Me: I could see how an educator that already feels
scrutinized and belittled by administrators, angry parents, and
"standardized" tests would feel that the cameras would just be used
against them.
Tanna: But I saw a video of an autistic child who got
stuck in the back part of a chair and instead of helping to free him, his
teacher videotaped it. You can hear her laughing.
Me: Ohhh damn.
Tanna: I just can't imagine that child feeling safe
anymore.
Me: so school is going to be a struggle. Would you
consider home schooling her?
Tanna: Originally that is what I wanted to do, to shelter
her from all the ignorance and pain and frustration.
But I quickly realized that was no way for her to become
the best person she can be.
Studies show that inclusion (sending her to a public
school) is the best way for her to thrive.
More children with Ds who attend public school are more
likely to not only graduate but go on to college than those who attend a
special school.
Me: Interesting, wonder if it's because their peers do
it, so why not them??
Tanna: It does push them to work harder.
Me: I will tell you, we had a small group of special
needs kids at my high school and they would have another student go with them
to every class to help them take notes or help them with their work.
Tanna: The most universal thing I have heard from
therapists, parents and teachers in the Ds community is that these individuals
are wildly motivated and want to do it all.
Me: Instead of study hall you could help one of them. I used
to help one student in a computer class. He didn't have DS, but was still in
the program.
Tanna: That sounds like a wonderful program.
Me: At that school, the special needs kids were NEVER
treated poorly. On any given day you could see them having lunch with all of
the "popular" kids. Seriously, they had a better in than me. lol
That would be the plus side of Catholic school. IMO
Tanna: I'm sure it helps make the child with special
needs feel much more normal than if a teacher was constantly hovering over
them.
Me: I think it did.
Tanna: I may have to convert lol That sounds like
something I would want my daughter to experience.
Me: It was like having a lab partner in every class
hahaha you don't have to be Catholic to go.
Tanna: Although I have been hearing more and more stories
of typical students doing beautiful things to ensure special needs peers are
made to feel special and included.
Me: I have always applauded that school for student
conduct. Never saw a fight or a major case of bullying.
I think people need to raise their kids with some more
compassion.
Tanna: Pepper's choices are special school with state
assistance or public school.
I am very excited to see how she develops. So far she has
blown our minds. She seems incredibly high functioning.
Me: well that's really good!
Tanna: We didn't experience any delays until just recently.
Me: what are those delays?
Tanna: She's not sitting up or crawling. She's actually
nowhere near ready to do either.
Me: Ohh, but she's doing really well with her head
control.
Tanna: We're just building enough core strength for her
to sit with assistance.
She's also not as far along with her gross and fine motor
skills as her ECE would like.
Me: I know another 7 month old that isn't close to
crawling yet and he doesn't have DS.
Tanna: I am not upset about it. I knew well in advance
that in the beginning they do all the things they are expected and slowly there
comes a gap between "typical" and DS. The older they are the larger
the gap gets.
But I was also told that it is a known fact that the more
work you put into your child the more progress you get out of them.
Me: good thing you're so dedicated!
Tanna: I am! It's not always easy. Pepper likes to be
stubborn sometimes. (She is half her father after all).
Me: lol true
Tanna: But we have our schedule. I set alarms to make
sure she does ALL her exercises every day.
It makes things easier that I am so OCD.
Me: hahaha
What are your feelings on marriage one day for her? I
read an article one day about people with DS being married to people without DS.
It was about advocating for the couples that don't always
get a warm welcome.
Tanna: Well, I won't lie. Right now I am hesitant. My
greatest fear is someone taking advantage of her (if ya know what I mean).
Me: yes. That is my concern.
Tanna: I feel like it really depends on her level of
development.
My mother married a man with a daughter who has DS.
She is 32 but is mentally 12-15.
I would not feel comfortable if she came home with a
typical man.
If it were someone who shared her level of capabilities
then I would be much more inclined to accept them, as long as he's good enough
for my precious angel.
Me: hahaha. gotcha.
Do you think your step sister would ever attempt to marry
a typical man?
Like, is she aware that she's not quite ready for it?
Tanna: She's in a group home so it's possible for her to
meet someone. She talks about boys from what I hear. She REALLY loves babies.
But from what I know she has not expressed an interest in
getting married or anything. In my mind that sounds about right. When I was 12
boys had cooties.
Me: hahaha
ohh that's a whole other thing, having babies.
Tanna: Well, men with Ds are sterile. Women often have
reproductive issues, but it's not impossible for them to conceive naturally.
Me: All of them are sterile???
Tanna: I saw an episode of Law and Order where a woman
with Ds was coerced into sex with her boss and later found out she was
pregnant. That episode has scared the bajeebus out of me.
And yes, from all the research I have done, the men are
sterile.
Me: That's really interesting. I mean if DS affects
everyone differently, why does it consistently cause sterilization
Tanna: I don’t know, but maybe it's like the upturned
almond eyes.
The women are varied in their reproductive health though.
Me: I think that’s probably because the woman’s
reproductive system is so complex.
Is there anything that you would like to say or share
that I haven't asked? I feel like I haven't asked any good questions in terms
of helping advocate and educate.
Tanna: I personally want people to simply understand that
those archaic stigmas about the cookie cutter people with Down Syndrome (who
are always happy and love to sing and dance) are ridiculously false. Like all
Irishmen being alcoholics.
And to raise awareness that those old laws need to be
changed.
As it stands I cannot leave anything to Pepper if
something should happen to me. She cannot own property. She has limited rights.
I wish people would take notice of how big of a deal this is!
Me: What happens to people with DS whose parents or guardians
pass away and they don’t have any other family?
Tanna: They would go to a group home.
Me: And if their parents left them money?
Essentially they become a ward of the state, much like a
foster child unless their parents make plans for them.
Josh and I have been searching for God parents for Pickle
and Pepper since I was pregnant. That search has become much harder and MUCH
more important since Pepper's diagnosis
Me: Do you already have god parents for the older girls?
And I assume you mean legally not just religiously
Tanna: Well, that is pretty much the only upside to being
divorced. They have someone to go to already.
Pickle and Pepper are the only ones we need to find care
for. If Pickle is old enough, we can leave Pepper in her care. But Josh and I
don't feel like that's exactly ideal given that they are so close in age.
Me: ohh yea. lol I forgot about that.
Right.
Tanna: Monkeybutt has said that she wants to be there for
Pepper when the time comes. But I love/hate the thought of that. If that makes
any sense?
Me: I do. You're happy she wants to volunteer and would
appreciate someone that loves her, taking her, but you don't want her to have
the "burden".
I would be so upset to split my kids up. I still don't
have anyone for mine.
Tanna: I refuse to split them up. I will come back and
raise them as a zombie if I have to!
Me: it's hard to find people to raise your kids and not
hurt any one's feelings.
Tanna: It is sooo hard! It makes it even harder being a
crunchy mother. Imo
I hope that this was helpful in informing you of things that you may not have known about DS. If you would like to learn more about Down Syndrome and what you can do to help check out Down Syndrome Association of Northern VA or the National Down Syndrome Society
I know this was long and you've made it to the end. Thank you! Go get yourself a cookie.
Image of Mooshka dolls found here.
Jeff Dunham photo courtesy of this article of the demise of his show.
Photos of Pepper courtesy of Born Free Photography
