Date Added

Saturday, August 23rd, 2008

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Personal

Down Syndrome Awareness

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I know that it seems as if October is a long way off….I’m certainly not ready to think about autumn, holidays, and all the shopping and planning those things entail! But October is Down Syndrome Awareness month – something the vast majority of people are unaware of. We all know about breast cancer awareness and it’s pink ribbons; we’ve all been made aware (recently) of the autistic community that moves among us; and ‘LiveStrong’ is almost a mantra for an entire generation of active, sports-minded young men. Why then, does it seem as if there are members of the Down syndrome community who are not aware of October’s significance? Why is the vast majority of the community seemingly unaware of BuddyWalk – the single largest fundraiser for the Down Syndrome Society nationwide? Why, at last year’s BuddyWalk (the first I attended) was there no media present and the lead story for the news was probably something as innocuous as a kitten stuck in a tree? Why, when I tell people that we’re getting a walking team together for BuddyWalk, do I get blank stares and ‘What’s that?’

I can tell you what the cynical side of me says. The cynical side of me says that nobody cares about our children and their future but us. The cynical side of me says that since ~80-90% of all fetuses diagnosed w/ Ds (Down syndrome) are aborted that society doesn’t think our children will be around to ‘burden’ it for much longer. The cynical side of me says that the AMA’s recent decision to recommend Ds screening for all pregnant women (not just those over 35) is aimed at encouraging termination of diagnosed pregnancies earlier and earlier. The cynical side of me says that our children must not be disabled ‘enough’ to be visible to the community at large – maybe if they acted like ‘Simple Jack’ (Ben Stiller’s latest ‘movie in a movie’ character) people would be aware of them. That’s the cynical side of me. The cynical side of me has heard too many stories of OBGYNs like my first one with my son who said “How will your daughters feel about having a retarded sibling?” or “Does your husband agree with your decision not to terminate this pregnancy?” or “You know that this child will never support himself and that he will be a financial drain on you – you’ll probably never get to retire.”
The other, hopeful and optimistic side of me says something very different. It says that Early Intervention therapies must be having a positive effect for our children to be so accepted in society that they aren’t noticed as much different than anyone else. The positive side of me says that IFSPs and IEPs must be effective in our educational system and giving our children the skills they need to take care of themselves with as little support as possible. The hopeful side of me looks towards a future where a woman met with a diagnosis – or even a positive screening test – will be told “You child has/may have Down syndrome. Here’s information on what you might expect to encounter in such a child.” rather than “Your baby has Down syndrome, I’ve scheduled a D&C for you after your meeting with the geneticist.”
I cannot tell you what life is like with a ‘Down syndrome kid’ – I can tell you what life is like with my son…who happens to have Ds. My boy is 2 years old. He had a heart defect when he was born. And it was repaired when he was 4 mos old – just like it would have been for any other child. He has 10 teeth (whoops – 11..another just broke through a couple days ago!). He has blond hair and blue eyes like his sisters and his daddy. He can stack blocks, ride a rocking horse, climb a ladder and go down a slide. He has a knack for knowing when the baby gate has been open for more than 3 seconds and can almost get through it as I chase him! He knows enough sign language to tell me he want ‘more milk please’ or he’s ‘all done’ or he wants to ‘go play.’ He’s learned to say ‘mmmm….uh’ for either ‘more’ or ‘milk’ (we think it’s both!). He laughs readily – even through his tears. But he can cry and be angry when things don’t go his way – or his sisters irritate him! He’s woken up dry or nearly dry for a few mornings and we just bought his first potty seat. He walked at about 11 months, stopped nursing and started using a sippy cup full time at 1 1/2, gave up the pacifier at about 1 year. He knows that the remote does something to the tv if you point it that way (those buttons are apparently just decoration!). He likes his swimming pool, but hates the bathtub. Likes milk, but won’t eat cheddar cheese (string cheese is okay). He never ate official ‘baby food’ but ate off our plates from the time he was able to chew a little. His feet are short and fat – like his fingers! He goes to church with us every week and sits and plays (fairly) quietly in the pew – he has never been to the nursery. I take him to his Early Intervention Therapy once a week and we spend days together while his sisters are in school. He likes riding on his bike seat when I go for a ride and has fun in the back of a wagon. He likes eating with his fingers – but will occasionally give a spoon a try.

Just a typical 2 year old….

I have a slideshow at http://www.portraitsbyj.org/welcome_to_wherever_you_are.htm

We are also fundraising for our local BuddyWalk. If you feel led to support our efforts, please visit www.firstgiving.com/connorellingson Thank you very much!

I will continue to blog about our experiences with Connor – pregnancy, screening, diagnosis and his first 2 years over the next several weeks.