Tuesday, January 16, 2007

"The" Down Syndrome

It was over 40' today. I was OK in airconditioning at work, but at the childcare, they only have fans, so Sheena had to deal with it more than me. Sheena doesn't seem to sweat, so she can really heat up. It can happen with the DS. It doesn't help that she has red-hair and is her father's daughter who also can't stand the heat.

I have taken to calling Down Syndrome, "The" Down Syndrome. I am occasionally surprised from the way some people talk, that all they see in Sheena is the DS. She is so much more than her extra chromosome. For me, calling it "The" Down Syndrome somehow distances her from all the stereotypes, and negative associations many people have of it. The stereotypes are so strong - placid, like music, like dancing, are heavy, short etc etc. Well so far Sheena has spent 80% of her life being irritable (not placid), she does like music (as does everyone else I know), she loves happy baby dancing, she is chubby only due to the Pred Meds but is currently on her radical diet, and she doesn't look short to me, easily filling the legs of her baby clothes.
I am also surprised about the low expectations some people clearly have of her - or not really her, but of people with DS, because they don't see past it.


Kim Ayres said...

Meg doesn't sweat much and overheats easily, which is why in the summer we chose to go to Northern France on holiday instead of the Mediterranean. How were we to know it would be 32+ in a fortnight of unusually hot weather?

I can understand your frustration at some people not being able to see past the DS. This is why it becomes so important that we talk of our children having DS, rather than being DS children. It is a characteristic of our children, not the defining characteristic.

But generally, it's a case of getting to know your child.

If you think about when you first meet someone. Imagine they have, say, a huge nose. If you've only been briefly introduced to them and don't really know much else, then their nose becomes their defining charactersitic.

In time, if you get to know them better, personality traits become more defining than physical ones.

Meg is probably shorter and stockier than many of the girls her age (although not all). She can be extraordinarily loving and caring, and she can be a right old grumpy pain in the arse.

She is an individual, just as Sheena is.

Jessica said...

Joey sweats a lot too! I too understand your frustration. People just don't understand.

Sara said...

It can be hard when we have to deal with people who just dont get it..One problem we have , and this is with LPNs that worked with Nathaniel!!! They use the "R" word! like it is an everyday word...Mike gets right upset when he hears it and tells them to please not use that word here. People just don't think!
I always tell people, remember to put the child before the disability, so it is " Nathaniel, the little boy with Down syndrome" Not " the Down syndrome boy, Nathaniel" Cuz you see the disability first and the child second.

L. Noelle said...

I love your blog! What a gorgeous girl! Stop by and say hi! we have a 2 year old boy, Jaden with T-21. Noelle

amy flege said...

wow. i can really see a change in sheena in this picture.. she looks great!!!!! iam sorry she doesnt deal with heat well. mayson does sweat but i have heard of many kids with DS that dont.
People need to get over it and start looking at our kids no differently as anyone else!! I have had more positive reflections from people than negative so i just hang on to those and forget the rest!!!

Christina said...

She is so cute in the pic. I love her hair. Vince sweats - a lot :-)
But I know exactly what you mean about the people only seing the DS. It is exhausting to have to arguee with the diagnose rather than the person.

I very much agree with Kim, it is important that we talk about our kids to the people that don't know anything about DS (just like I did not before Vicne was born). But I do also think it is important to act as 'normal' (hate that word) as possible, so that others see that we are just that - 'normal'.

BStrong said...

Sheena looks fabulous. One of the reasons my wife has gone back to school to get her masters as a physicians assistant is because of her experience in the healthcare community with our daughter Amanda. It seemes that when ever we took her to the doctors for something they didn’t diagnose the problem, but the DS.

Michelle said...

I understand what you mean. It's like the world wants to put our kids into this nice little box and say x and x aobut them, instead of looking at them as individuals- which they are!