The whole experience with Eleanor is baffling. Jonna and I resolved at her birth to treat her like we would any other child, including high expectations. The hardest part for me is seeing her work hard to achieve what her sister, Taylor, can do in her sleep.
Eleanor really tries to succeed. And she is having success of the kind that makes you wonder about disability and retardation, both of which she is presumed to have. Recently she came home from school with the classic middle-school assignment of learning all fifty states and their capitals. It made me shudder. This is the natural consequence of Eleanor, Jonna and I deciding last spring to abandon modified curriculum except for math and science. Now it seemed to me that we had set her up to fail. But what do I know?
Eleanor went to work with a vengeance, studying constantly and practicing, practicing, practicing. When the test came, she got 100%. A written test, no less. How is that possible? I don’t know. But she did it and is, correctly, proud of it.
So that throws into confusion the question of what she is capable of. Even though we have deceived ourselves into thinking we set high expectations, I think it is clear that they are not high enough.
You wrote to ask me what a wise old woman would tell her dis-labeled grandson to prepare him to meet the prejudice that comes at him, to get it that when people think there’s something “wrong” with him, what’s wrong is not with him but with them and their bigotry.
I think the main thing is for your parents to love you, and show you that you are a wanted and valued person. As you can see, there is a great deal more about raising a child with a disability that I don’t know than that I do. What I am most pleased with is that we have always taken Eleanor seriously as a person, listened to her, treated her with respect, and showered her with the knowledge that she is loved without limit, that the world is a better place with her in it.
When situations like the test arise in her life, we use it as an opportunity to remind her how smart she really is. We have also demonstrated to her from the start that she is cherished and loved, and that her “condition” is not so unusual.
She has been told all her life that life is unfair and that there are lots of stupid, petty, jealous, insecure and just plain mean people who will surround her all of her life just as they do in mine. We have told her that there are things she will not be able to control. What she can control is her own dignity.
Eleanor believes herself to be a regular person. Right now, also for school, she is describing how it feels for her to have Down syndrome. What impresses me most in her writings is her emphasis on normalcy. “Mostly, I am just like you” is her message.
I believe she is prepared for unjust treatment. I don’t think she’s resolved to second class citizenship. Of course I believe it is her future, another thing she will have to deal with when the time comes.
It is a fine line, trying to let her know her differences and perceived limitations while at the same time telling her she can be whatever she wants if she tries.
The emphasis is always on trying. That sounds fine but it also scares me, to think of her setting goals and dreams for herself that are not real. But, on the other hand, when I was fifteen I had the illusion that I could be President, so I guess her situation is not unique.
Eleanor definitely has a presence. She is friendly, has great social skill and a lot of confidence. In some ways, she is just the person you describe on the page you sent me [pages 12-13]. She clearly has the view that you can take her or leave her and that’s your problem, not hers.
She is going to a dance Saturday night at the Convention Center. I am going too, but hope to hide in the shadows. Eleanor is excited the way Cinderella was excited or, I guess, any teenage girl looking forward to a night of dancing in an adult sort of place.
She works daily on her French, has a great accent and has never considered that Down syndrome will make it impossible for her to be bilingual. On the other hand she babbles endlessly with the same old stories of boys and school and drives us nuts with it. I guess that’s normal.
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