Tuesday, September 25, 2007
what the future holds...?
Last night I read a blog posting by Michael Berube, eminent culturual studies scholar and parent of a teen with Down syndrome (author of Life as We Know It: A Father, a Family, and an Exceptional Child). Berube writes a lot about his son Jamie on various blogs and in magazines. The entry basically addresses some of my worst fears and confirms some of them.
Here's an excerpt:
And I hope I haven’t given people the sense that everything is just wonderful with Jamie all the time, and that Down Syndrome isn’t such a big deal if you just take the Right Attitude. (There’s a little story in the DS community about how having a child with DS is like winding up in Holland when you’d planned to go to Italy, and while this story serves the crucial function of reassuring new parents that their lives are not ruined or blasted or just plain over, it’s really not a very good analogy, in the end.) There’s a reason why so many Jamie Stories involve me taking him on trips or playing golf with him or going to aquariums and zoos with him: it’s not like he has friends. Oh, people are mostly very nice to him, and kids greet him cheerily in school and in town, and his teachers and aides like working with him, because he’s a great kid. But he doesn’t have the kind of social network other fifteen-year-olds do; he doesn’t do sleepovers and play dates and just hanging out.
OK, so it's not just us. I'm planning Stella's sixth birthday party and facing once again the fact that the only children there will be her cousins. Even at her school, she does not really have "peers." And her delays in expressive language make it difficult for her to make friends. Sure, most people are friendly, and I am frequently treated to stories of this or that person's encounter with someone with DS in their past--usually of the "they're so sweet" "They never know a stranger" variety. They mean well, and at least it's better than frightened stares, or taunts, or Flava Flav style insults. But it doesn't exactly put a mama's mind at ease.
Berube goes on to discuss health care and other issues of Jamie's future. One thing that is terrifying is the high incidence of Altzheimer's in people with Down syndrome. He points out this article in the Globe and Mail (keep trying and you can read it without having to subscribe)--one of the biggest downers (pun unintended) I've read in a very long time. Giving a painfully detailed account of a 55-year-old woman with DS who has AD, it's actually entitled "Doomed from Birth to Death"! Geez, folks, give us something to work with here.
It is freeing in a way to read Berube's bracing and detailed prose, which painstakingly delineates the issues facing parents of a person with DS. This beautiful little girl--our Warrior Princess with her determination, her personality, her sweet little face and kisses, her grumpy tantrums, her joys and frustrations--has a future that is arguably more uncertain than a "typical" child. I'm so tired of parents who do not have children with special needs trying to equate their struggles with ours. I realize they do this with the best of intentions, trying to de-emphasize our family's "difference." But it actually has the opposite effect, as far as I'm concerned. They have no idea. I'm not being a drama queen. I don't want a pity party. I'm just being realistic.
Part of the problem I am having in writing about my experience parenting Stella is I'm afraid the whole thing will sound like whining. I suppose in once sense it is the question that plagues all memoirists--"Am I being self-indulgent?"--and in a way memoir is inherently indulgence, but I want to make sure there is some value for the reader. That's my goal, anyway.