Monday, January 29, 2007

Was looking over some pictures I took at the zoo. She looks very Downsie in them. I don't like those pictures. Perhaps I should get used to it. Perhaps she'll look more "Downsie" as she grows older. My favourite pictures of her show what's inside-- glee, curiosity, delight. I wonder what people who wander by when she's looking Downsie think? It's so recognizable, and it makes for easy classification-- gone is the excited/angry/affectionate child, and left is the down syndrome child-- who is happy, easy-going and loves music, etc. It's like the down-syndrome child is a changeling for my delightful Ellie girl. So I don't publish those pictures-- they're not of Ellie, they're of someone else.

It's funny that it's only through the camera that I see Ellie with down syndrome. She's so engaged, so fluid, that I rarely look at her and think about DS. The camera reminds me. And I'd rather not be reminded.

I think we celebrate her achievements more because of DS. Every word, and proto-word is held up for examination, and as proof that she'll be ok, she'll be high-functioning. Little changes in movement patterns that other parents might miss in their crawling/walking/running/jumping children get lots of attention, analysis -- did she really do that? Will she do it again? Is it a step forward, or something we need to discourage? Perhaps I'm imagining it?

We can't take her development for granted, so we pay it lots of attention.

Today at the shopping centre Ellie and I were having coffee and we saw an intellectually disabled older woman. She was very big, broad shouldered, with a sister or helper or someone. She'd done her shopping and was talking about it to the other woman. She seemed relatively independent, but was obviously looking for encouragement, assurance. So perhaps although she could do the task, she wasn't at all confident, or self-directed?. Anyway, this isn't what I want for ellie. I want her to have goals and be interested in doing things. I'd rather she was forgetful, impulsive, and not great at planning ahead than she needed other people to give her goals. It will be more fun for her that way.

We also saw a couple of younger people with DS, probably coming home from work (wherever that would be?) They were moseying along, just like all the other commuters. Seemed to be doing well. That one was close behind the other would indicate they were coming from the same place, which might be a sheltered workshop or something, which doesn't sound that great. But I don't know, having never been near one.

Not having any experience with older people with DS is hard-- I don't know what is realistic to hope for Ellie, and I can't really imagine what she'll be like when she's older. Or I can, but I've no faith in my imaginings. No parent knows what's going to happen, but most they have parameters in which to dream.

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