Monday, April 03, 2006

Yo Scientists!! Get Real!

This is Paige's "Pondering Look"

Ponder this:

Sufferers of Down's syndrome suffer mild to severe mental retardation, short stocky body type, large tongue leading to speech difficulties, and (in those who survive into middle-age), a propensity to develop Alzheimer's and Parkinson's Disease. Ninety-five percent of Down's cases result from nondisjunction of chromosome 21.

This is the first quote I found tonight when I googled the "Human Genome Project," a project that is systematically studying each chromosome to determine the genetic make-up of it. Since the 21st and 22nd are two of the smallest chromosome (The largest being the set identified as the 1st chromosome, and getting progressively smaller as the number goes higher), these were the first two that were completely "identified."

With information like this, is it no wonder the rate of abortions for women who find out their unborn child has Down syndrome is so high? The first word tells you your child will suffer. And if you don't believe he will suffer, read on, because this article reminds you again 4 words later.

The good news goes on to say your child will possibly be severely mentally retarded (and we all know what a preconceived notion of "retarded" this country has).

Then, imagine a short, fat little person with their tongue hanging out to their belly button. Oh, and if by chance they survive, they will have Parkinson's and Alzheimer's Disease.

Gooooooood Lawwwwwwwwwwd.

It scares me, and I already have a child with Down syndrome!!!

What will it take for scientists and "professionals" to realize that people with Down syndrome are so much more than this crazy list of medical "what-ifs" that they chose to hand out?

At the very least, get the simple facts straight...people with Down syndrome don't have tongues that are any bigger than anyone else's. They do, however, have smaller facial bones, and jaw bones that, coupled with low muscle tone, can sometimes make the tongue appear to protrude.Many people with DS do not have tongues that protude, and those that do are now being helped by exercises for speech and eating, that help strength those muscles.

Of course, I cannot be completely sure, because I do not have Down sydnrome myself, but I am almost positive that its not something someone "suffers" with. I make this assumption as a well-educated guess, because Paige is a happy, healthy little child that embraces life and enjoys every minute of it. She doesn't appear to be suffering from very much!

And then there's the other option...ask someone with Down syndrome...because most people with Down syndrome like to talk, thank you very much, and will tell you their opinion if you ask them.

Surviving to middle-age? There is nothing in having an extra 21st chromosome in and of itself that would shorten the life of the person who had it...there are sometimes medical issues involved with being born with T21--but we now have the tools to address those problems and I would argue that most people with T21 live well into middle age and beyond.

What if the information above read:

"People born with Down Syndrome will enjoy the world at a slower pace; they are destined to stop and smell the roses and appreciate the simpler things in life...they will embrace childhood innocence longer than most people. They will dance as if no one is watching. They will laugh with heartfelt joy when they think something is funny, and clap and yell "yaaayyyy!!!" when something needs to be celebrated.

They will choose their words carefully. They will be kind enough to show you every one of their milestones, and allow you to stop and celebrate them, without rushing to the next one, so that you can fully rejoice in the blossoming of this incredible human being.

Many people born with T21 will have gorgeous Brushfield spots on their eyes, which will look like tiny starbursts have been forever caught by them. Only those lucky enough to have been born with an extra 21st chromosome will have these.

You can probably expect to see tiny, delicate hands, and a little button nose on your little one born with T21. Oh, and don't forget that cute little space between the big toe and the next, that will leave sweet little baby-shaped footprints on your bathroom floor for many years to come every time he or she gets out of the shower.

And, with proper medical care, you will be blessed for many, many years with this incredible new person in your life."


Of course, I understand that doctors and scientists are obliged to list the medical conditions that can, and sometimes do, come with having T21.

But, wouldn't it be nice, if they would start adopting the "child first" philosophy that so many of us who are blessed with a family member with DS do?"

Down Syndrome person"

"Person with Down syndrome"

It makes all the difference...

Sometimes, its a matter of life or death...


Camille said...

Betsy, what a piece! I totally agree. This person will suffer from... What a terrible dark picture. I once bought a book at a book sale (How to help the retarded child) written in the early 70's just to see how things have changed and this 2006 quote is worst than what I read in that old book!!!
I also have a daughter who has D.S. AND BELIEVE YOU ME: SHE DOESN'T SEEM TO BE SUFFERING FROM ANYTHING. Emma is 5 and very enthusiastic. She doesn't painfully fight her way through life (yet) she simply runs or skips or jumps, giggles, counts to 10, reckognizes most of the letters of the alphabet and speaks quite a few words. AND EVERY SINGLE DAY OF HER LIFE, I THANK GOD I DIDN'T TERMINATE HER LIFE BECAUSE EMMA IS SO MUCH FUN TO BE WITH. If for evey text written by a scientist people would meet someone like Paige or Emma, I am convinced that expecting parents would think twice before deciding to terminate a wonderful life in the making. Camille

The Imperfect Christian said...

It makes all the difference in the world...something I didn't GET until my children with DS came to me.

Michelle said...

I absolutely love the description you rewrote on what down syndrome is! PERFECT!! Oh if only all medical textbooks etc...could say it like that! Thank you!

Anonymous said...

Such an amazing post-and so true.

Anonymous said...
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Kelley said...

I'm inspired....once again. Wonderful writing Betsy!!

Shelley said...

absolutley loved this piece. I haven't 'blogged' before and don't really know what I'm doing but as Hannah's Mum - she has DS and is 18 months old I could not agree more. We need to get our babies out there in the public eye as ambassadors - because sure T21 isn't what I ordered but my gorgeous girl is exactly who I want her to be - perfect as she is.

Nicole said...

Amen sister!