I know what my book is going to be about.
Some time after Eric was born, it came to me rather strongly that there was something having to do with his having Down syndrome that was going to become a book I would write. I’ve always wanted to write, and I’ve even begun a children’s book, but always in the background there was this thing about Down syndrome, but the tricky part was that I didn’t know just what it was. I figured I needed to live with him awhile and it would come to me.
Today it came to me.
Today was the day Eric was “evaluated” by a team of “experts” so as to assess his needs vis a vis what the state and the school district will provide in terms of his various therapies. (You may recall that Eric had one of these evaluations before, in Colorado, last August.) Up to age 3, children like Eric and with a whole range of developmental issues receive therapy in their homes; after age 3 they are considered under the purview of the school district and so typically receive these therapy services in a school setting.
Fine.
But this doesn’t work for everyone.
It was plain to me that these therapists today, while well-meaning, are most comfortable being able to define children through the narrow range of guidelines they are given. Walks at 2 years, otherwise it’s a problem. Communicates through speech and signs by age 3, otherwise it’s a problem. Fits puzzle pieces into the shapes they “go” in, never mind what other game the child might dream up to play with them, otherwise it’s a problem. They’d like to see Forrest Gump braces on his legs, so he’ll walk. They don’t know this boy, otherwise they’d know that he’ll walk when he’s good and ready, and not a second before. The therapist’s parting words about that? “Be sure you get the kind with hinges”. Great, so my kid walks, but with the gait of Frankenstein?
No, thanks.
So, my question is, what’s the hurry? I’ve known a long time that Eric is different, different in many really subtle ways, from other people. For one thing, his DNA is different. Shouldn’t that be a clue? He truly looks at the world through different eyes than I do, or anyone else I know. It’s more than the uniqueness of every human, it’s….different.
Shouldn’t we, then, honor these differences of these wonderful, humorous, giving people, rather than try to fit them into the box everyone else came in? I wish every one of you could see the gifts of a person with Down syndrome; they have…..kaleidescope eyes. They see the world differently and therefore have different priorities. I don’t even know what those priorities are, but I can’t wait to find out. Shouldn’t my child have the freedom to express them? Are we, as the majority, really entitled to mold these people into something they are not, simply because we might be afraid of who they are? Because they had the effrontery to be…..different?
I think not.
So that’s my book. Helping other parents with this process, guiding them in this new world of incredible discrimination so that their children have the opportunity to be who they came here to be.
October 13th, 2006 at 8:39 am
It is the nature of modern man and science to put things in boxes, to level its “scientific” eye and view things in within a limited purview. Were it that the thing especially a human being, was valued for what it was instead. Van Gogh’s mourn was “Why can’t they love me for who I am?”
Anatomy and Physiology is dismembered into disparate parts, and then at the end, the student is asked to see the human as a whole. I have been involved in surgical procedures, once inside the human body, there are no dotted lines telling one this separates the liver from the gall bladder. But science does with its textbooks, its narrowly written and cataloged columns and its floating in the air illustrations.
Our well-meaning doctors and therapists, driven by our greedy insruance companies into narrower and narrower views don’t deliver true health care, they deliver “managed” care. Tis a far cry from what it once might have been, and with all of our technology and personpower,…could be.