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:

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.

I watched it.

Turned out, it was a very old tape (much heavier than current VHS tapes, which I guess are lighter because they’re getting ready to go POOF altogether, followed by DVDs, leaving me screwed) with Alfred Hitchcock’s “Notorious” taped after the 1992 documentary “Educating Peter,” which a friend had given me — she found when she was cleaning out her old tapes.

The tracking was awful, so I kept having to look away, but to be honest, I would have been looking  away, no matter what. The documentary won an Academy Award, so it’s not that the piece is poorly done — to the contrary, I was impressed with the head-on approach. The “nut graph,” as we say in journalism, was simple in a good way: Federal law has mainstreamed kids with disabilities. They are in our public schools. Here is the example of how one kid affected his third grade classroom.

I was also impressed that, at the outset, the filmmakers said they were not taking a political position — that some people liked mainstreaming, others did not. But curiously, at the end, they put up a big fat caveat: a black and white typed message saying that a. not all kids with Down syndrome have behavioral problems like Peter’s. And b. that all kids can benefit from the mainstreaming experience.

So I guess there was some pressure, after the movie came out. I wasn’t at all surprised about the former comment, since it’s what kept me looking away. I’ve got to say (and this whole “Down syndrome Box” thing won’t work if I’m not honest — who knows, maybe it won’t work, anyway, but I’m going to try, at the risk of making enemies with the likes of Peter’s mom) that if I’d seen this documentary when Sophie was a baby, I would have tossed myself out the highest window I could have found.

Ray walked in when the movie started. He tried in vain to fix the tracking. When he saw what it was he left. As you’ll recall, he didn’t care one bit for “Graduating Peter,” the follow-up documentary.

“The kid has ADD, too,” he said, as he hightailed it back to the kitchen.

I am quite certain that Peter is a lovable, wonderful, productive member of society. And I can’t speak to his high school years, as I didn’t watch that one and am not sure I will. But I can say that he was a freaking handful for his third grade teacher, a woman who appeared from the movie to have absolutely no experience with special needs kids. It was hard to say whether there was an aide in the classroom. There could have been, but if there was, no mention was made.

Instead, the short film is presented as a year filled with, basically, the task of getting third graders to police this kid. They did a good job, I have to admit, but they did it was so much compassion, grace and maturity (onscreen, at least, and that even includes the “uglier” moments, which the filmmakers, to their credit, did put in) that I have to wonder (sorry, Carrie Bradshaw) just how much the fact that cameras were in the classroom had to do with the experience.

That’s the problem. There’s no way to truly document the experience your kid (special needs or otherwise) will have in the classroom. I learned this when I tried to volunteer in Sophie’s public preschool room. The Amazing Ms. Janice wouldn’t even let me in the door — and for good reason, I learned, the morning I did visit. My presence changed everything. Cameras — even with the filmmakers’ best intentions — changed everything, too. I’d bet on it. Peter was one challenging third grader, and everything I know in my being tells me those kids acted differently toward him because they were onstage.

Or maybe I’m just a cynical bitch. That is definitely a possibility.

I cringed more than once, watching, because although the third grade Peter is what Ray and I would most unkindly label “low functioning” (Sophie, I think, does many things better already, at 5) I saw my daughter in Peter, again and again. I’d piled my lap with magazines to read while I watched, in case exactly that happened, so I peered from around the pages of Real Simple and Bust to see Peter say, “Soooorrrrry” just like Sophie; to see him hug (inappropriately) his classmates and refuse to let go, just like Sophie. When he turned his head to the side, I saw Sophie. When he threw himself on the floor and said, “Sleepy!” I saw Sophie.

I watched that movie and I saw Sophie disrupting that third grade classroom and even though Peter/Sophie did well at the end and even won a prize, I saw my daughter hopelessly behind in academics, with no “real” friends — a mascot of a classroom of kids that pulled together to help out the f-ed up child tossed in with them.

Perhaps not the best thing to watch, three weeks before kindergarten starts. I think I’ll dig up the first season of “Life Goes On” for my next installment.

I really should shove that in the box, I thought, rolling back the other way to avoid morning and the inevitable ouslaught in the wake of a vacation.

Or, I suppose, I could watch it.

Last summer — or maybe it was two summers ago — I started this collection. I was at an impasse with writing about Sophie, and when I find it hard to write I always fall back reporting (old trick, when your paycheck depends on your ability to produce journalism or some semblance). So I started gathering material in the form of any and all pop culture references to Down syndrome.

I bid on all kinds of things on eBay — dolls made to look like they had DS, and “tintype” photos from the early 20th century, of beautifully dressed children (always children, I guess no one lived to adulthood, or was photographically desirable by the time they reached it) with DS.

I didn’t win any of those, but I did wind up with a box of DVDs, VHS tapes, books, magazines and other stuff. My memory’s a little hazy, because I haven’t really opened the box since I started the collection.

It taunts me, from under a cabinet in my bedroom, and a few weeks ago I put the cardboard box inside a plastic Rubbermaid. Sort of like wearing two condoms, I guess. OK, the truth is that I’m scared of that box. Inside (as far as I recall) are the first season of “Life Goes On” (the infamous show starring that guy named Corky) and a lot of childrens books about DS I should probably show Annabelle and a lot of quasi-educational stuff I guess I should read.

But my coping mechanism (one of them, anyway) since Sophie was born has been to live in the moment with her, rather than look beyond her to others with DS, for clues. It’s tempting, which is why I stare at Megan, the bag girl at Safeway, and watch the other little girl at Sophie’s future school, the super smart girl who’s a year older.

And I keep telling myself I’ll open that box. Part of the reason for starting this blog was to force myself to start writing about the contents, item by item, rather than just amassing them. Anyhow, now the box is full, so I’ve got to do something. Start a new one?

Earlier this summer, a dear friend offered me an old copy of “Educating Peter” (a seminal documentary from a while ago, long ago enough that when the kid — portrayed in this doc as a grade schooler — finished high school, they made “Graduating Peter,” which Ray made the mistake of watching, at my urging, when Sophie was very young. It’s depressing; I hear EP is very good, though) and I took it, telling her I’d put it in my box. In a hurry, I left it in a pile next to the box, behind some suitcases.

Those suitcases went on vacation, revealing the tape. Maybe I’ll watch it, to avoid opening the box to try to cram it in.

Or maybe I’ll get on eBay and see what’s for sale.