When I started this blog, I had the idea that I’d immediately open the Down syndrome Box and start writing about the contents.
I think I’ve mentioned it once already a while ago, but briefly, the Down syndrome Box is a big Rubbermaid packed with random references to Down syndrome — mostly books, videos, DVDs and magazines, mainly stuff I scrounged up on eBay in the middle of the night (several nights), a couple summers ago.
I had this idea that I’d gather all the pop culture references to DS I could find. Trouble is, I wasn’t much interested in looking at any of it. Way too close. For someone who considers reading a sport, I’ve been really bad about reading much about Down syndrome — or, for that matter, watching much.
I have read “Expecting Adam” and “The Memory Keeper’s Daughter” (preferred the latter) and a smattering of other things people have given us, including parts of Michael Berube’s excellent book, “Life As We Know It.”
The closest I’d come (til this week) to actually opening the Down syndrome box and taking anything out was when I picked up a VHS copy of the documentary “Educating Peter” that didn’t fit in the box, and thus was sitting on top of it. I watched it. Big mistake.
And then the box sat for months, under some piles. I started thinking about it recently, as May becomes visible on the horizon and I consider that Girl in a Party Hat is really meant to last just a year, which means that if I’m going to write about the contents of that box I better get started.
I had a reason to open the box the other night. Annabelle has changed her science fair project topic from fossils to Down syndrome. Ray’s really skeptical about this; he thinks she’ll ask too many questions and wind up sad. He even tried to tell me that it makes Sophie uncomfortable to hear a lot of talk about Down syndrome. (I just don’t see that.)
He’s always right in the end, so I’ll reserve a final decision, but for now I’m not seeing any harm. Annabelle is really eager to do it — I keep offering her the chance to go back to fossils and she refuses — so I figured we better do some research. I remembered that I’d tossed some kids books about DS in the box, so I opened it (albeit quickly), and fished out three books from near the top.
I don’t recommend any of them, although Annabelle may disagree. The first two are by the same author, Stephanie Stuve-Bodeen: “We’ll Paint the Octopus Red” and “The Best Worst Brother.”
Both of these books get high marks on amazon.com (I looked after we read them) and Annabelle seemed to really dig them — they’re simple stories designed for siblings of kids with DS, explaining basically that yes, these kids are different, but really in the end they can do everything you can do, it’ll just take them longer.
Um, okay, that’s a big fat lie. I hope Annabelle doesn’t come waving “We’ll Paint the Octopus Red” in my face when she’s 16.
Of course, the truth is, I don’t know the first thing about what I should be saying to Annabelle about Sophie — I certainly haven’t broken the news that it’s unlikely Annabelle will ever be an aunt, or catch a ride to the mall from her little sister.
If I have to be brutally honest, I’ll tell you that the thing that bothered me most about those books is not that they’re vague. Goodness knows, I’ve been vague with Annabelle and even with myself.
The real truth is that if these books weren’t about Down syndrome, I’d never, ever give them a second look in a bookstore. The writing’s sappy and dull and — even worse — the illustrations suck. I do hate to say that, because there’s a chance feelings will be hurt, but it raises a bigger point.
This might be an unpopular opinion, but I have felt strongly since Sophie was a baby that the style challenge for a kid with Down syndrome is even greater than for a typical kid. And if I’m going to hell for saying that, so be it, because I’ll go farther and tell you that I don’t believe kids with developmental disabilities should ever wear overalls or sailor suits, and that’s just the beginning of my list. I even announced this very publicly, at one point:
Following from that twisted but I still say solid logic, let’s not put dorky illustrations in kid books about DS. Don’t they have enough challenges as it is?
(To finish the thought, the third book I pulled out of the DS box the other night, “What’s Wrong with Timmy?” was even worse. It’s by Maria Shriver. Annabelle sort of liked the tale of a girl who befriends a boy who’se different, but interestingly, she didn’t like the fact that the words “Down syndrome” were never used. Luckily she lost interest and hopped off the couch before we got to the God part, which I’m not down with. The illustrations in that one, by the way, were also really bad.)
I’ve already gone on way too long for the blogosphere, I know, so I’ll conclude on a high note. There is a kids book at the bottom of the DS box that does Sophie (and all the other kids) justice. It’s called “My Friend Isabelle” and it’s by a woman named Eliza Woloson. I’ve never met her or her daughter, who’s a few years older than Sophie, but I know Isabelle’s aunt. She’s an incredible artist named Angela Ellsworth who happens to live in Phoenix.
Ellsworth’s hard to explain on paper, but let’s just say that her most recent exhibit — her own take on Mormon “sister wives” — involved intricately designed bonnets, hand stitched portraits and a performance piece in which young women dressed as sister wives performed famous pieces by women performance artists through the years, one of which involved a machine gun and another a paint brush held in an, um, indelicate spot.
Check it out: http://www.phoenixnewtimes.com/slideshow/view/219570
Don’t worry. Eliza Woloson’s book about her daughter is appropriately tame — but it’s also whimsical, funny, beautifully illustrated and a little bit heart breaking — and when Angela gave me a copy, a while back, I read it and loved it and stowed it in the DS box for future reference.
Tonight I’ll dig it out of the box for Annabelle. And Sophie.