It Came from the (Down syndrome) Box: “We’ll Paint the Octopus Red” and “My Friend Isabelle”

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. 

octopus

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:

http://kjzz.org/news/arizona/archives/200504/overalls

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.

isabelle2

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10 Comments

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10 responses to “It Came from the (Down syndrome) Box: “We’ll Paint the Octopus Red” and “My Friend Isabelle”

  1. Woodbine put out a series of books several years ago, about a boy with DS—no mention is made… but you can see it. I actually like that no mention is made. You can add what you want!
    He is shown doing things. I saw only one of the three books (Russ and the Almost Perfect Day , by Janet Elizabeth Rickert), and it was very good, showing him in aninclusion setting, and his struggle with the moral question of whether to return lost money he found.
    Problem is, they are out of print, and cost way too much to buy on Yahoo. (Maybe Amazon has cheaper?) Maybe one can find in an inter library loan.

  2. Kim

    My husband and I have been reading your blog for a while now, after having heard you on NPR. And I laugh out loud sometimes and can be teary eyed all within a single sentence. Tonight I laughed out loud about the mention of style. We truly believe that no one ewith DS should be allowed to wear overalls. I’m a graphic designer so I’m well aware of style and looks – when we see someone wearing overalls we call it “DS Old School”. We are not trying to be mean… more light hearted… thanks for the blog.

  3. I agree with you, on all counts. I’d love to see more books like “My Friend Isabelle,” too.

    I’m a writer and mom to a child with DS, too…I wonder if you know about my book? I’d love to send you a copy, if you haven’t, but I should warn you that it very well might be “too close.” Or not. Maybe it will feel familiar and true, which is the way your writing feels, to me.

    xo

  4. Sue

    You should write a childrens book about D.S. ….Yes you should.
    Are you really going to stop this after one year?????? Noooooo!

  5. Kathy

    Amy,

    I’ll go out on a limb to suggest that maybe you started this blog, at least in part, to explore this whole deal outside the box anyway. You’re not a “living in the box” person in any way in your life now or before Sophie was born. She’s teaching you, you’re teaching Annabelle, Annabelle is teaching her fellow students, and you, Ray, Annabelle and Sophie are all teaching US. It’s organic. Which is why I think people love reading your blog.

    You are writing your own book.

  6. I really hope you don’t stop in May. I would really miss reading you. I agree with everything you said style wise re. DS. I am also anti-sweatpants for Leo (besides for sleeping in). Don’t really have a good explanation for it, but there you go. I love the look of My Friend Isabelle. I’ll have to check it out. Have you seen the board book “I Can, Can you?” It’s pictures of babies and toddlers with Ds, just living their lives. No mention of Ds. Both my kids love it.

  7. elewinnek

    I agree with Sue.

  8. wow very nice
    really i like this blog
    thanks

  9. What!?! Why are you only doing this for a year? I will be sad not to read your blog.

    Thanks for the reviews. I’m going to order all of them from the library.

  10. hi.

    I just found your blog (via Welcome to Illinois), and this is by far my favorite post so far.

    Unfortunately, I have a mother who used to love to dress me in overalls as a wee bairn, though I’ve luckily mostly put a stop to that with my son…so far.

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