Reston writes about his daughter, Hillary, who was stricken at the age of eighteen months with a high fever that left her significantly (and mysteriously) impaired. His descriptions of the onset of her seizures is enough to keep us up at night. But it was this observation that resonated with Julie, and with me, enough to share with you.
When we moved to Washington that summer, the coldness and embarrassment of strangers were evident. With Hillary's yips and her strange gait and her impulsive gestures and her hovering parents, it was clear to any passerby that something was wrong with her. Strangers turned away or looked at her curiously as if she were an exotic creature from Mars or the circus. As we met new people, their reaction to Hillary, whether inviting or embarrassed, became a litmus test of whether we chose to pursue the relationship. In our minds we knew this to be unfair, and later we came to realize, in our denseness, that good and well-intentioned people often simply did not know how to react. But we could not help it. It meant that our circle of friends shrank to a precious few.
We haven't finished the book yet, but so far, it has given us a sobering and gripping look at a family dealing with another child's monster, one that is much bigger and more sinister but vaguely familiar all the same.
7 comments:
I'll have to read that book, the quoted passage gives me moment for pause
I have been reading your blog for a long time and have been impressed with how you advocate and truly "hear" your daughters voice. She knows that you in your wife are in this with her no matter what, and that feeling of safety can not be replaced.
The problem I have encountered with my child, who use to be PDD-NOS, now is not is now, Bi-Polor or so the "experts" say (she is a teen now) and what was the most painful was the family and so called friends who did not give the support and love. Strangers are painful and frustrating enough, but when it enters your home.....makes me very sad for them. Did not mean to be a downer, but this passage touched a nerve. I will have to get this book. Can't wait until yours comes out.
Rob, I have a question for you. I am very open when people want to know "what to say" to someone who has suffered a great loss.
I'd like to ask the same of you. What is the ideal way you would like people to approach you? From your entries here, Schuyler looks pretty normal, but you have mentioned before unusual movements and drooling, which make people shy away from her. You also wrote a very touching entry about the waiter who dealt directly with Schuyler and her BBOW.
Is "do you mind my asking what her problem is?" an appropriate question? Is ignoring any differences the best way to meet your family?
I'd really like to know what is acceptable and what is not. I always wanted people to know that talking about my children was not at all offensive and that I liked remembering them with people who knew them.
Thus, I would love to have some guidelines to know the way to approach a family with a child who has her own monster so that it doesn't offend anybody, but that you can let it be known that you are truly interested in getting to know them.
Excellent book!
I can't speak for anyone else, of course, but I suspect that most parents of kids with disabilities prefer it when people with questions ask directly. I'm nto sure there's a particular way of asking that's any better than another. We actually have people ask us abotu Schuyler all the time, particularly when she's using her device, and we are always happy to talk to them, to the point of bordering on the evangelical.
Some people try to ignore the differences, and that is fine to a point. After a while, though, when Schuyler can't answer questions verbally or when kids start to ask questions, it's a hard approach to take. I think the two things that parents of disabled kids find the hardest to face are pity and fear. Schuyler doesn't need or want to be felt sorry for, and she's not contagious.
WHen Reston talks about embarrassment, I think that's what he's talking about.
Pity, fear, and that air of bizarro superiority some people adopt.
I like people who just treat us like regular people, though that's something that cannot be faked. People either get it or they don't.
For those who don't, I certainly don't mind questions. Any sort of earnest interaction is good. People need to know we are all freaks in our own way.
When my daughter notices something, like a kid in a wheelchair, and she's curious...I try to get a feel, and if it seems like there is an opening, I'll encourage her to go say hi, get to know the person, and she usually doesn't even need to ask...the other person often already knows what she's curious about and shares...or they talk about somethign more important like the bug on the floor. Who knows.
I've always thought, you know, seems like yeah, acknowledge thre is a difference here, then get on to the important things like the bug on the floor.
So...yes? No?
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