“Do you have any Kleenex in here?” he asked, looking around the car. I grabbed my purse and started digging, handing him two — including one that was definitely not used.

From the back seat, Annabelle said, “Grandma always told me to always keep a tissue in my pocket.”

The car was silent for a minute, and I wondered, have I ever given my kids such valuable advice?

And then we were at school.  We piled out and the girls rushed the cafeteria, ready for the annual school science fair.

I love the science fair. The kids really get into one another’s projects, and the judges’ decisions aren’t made til the day after, so for that night, at least, everyone’s a winner. Last night when I tucked her in, I asked Annabelle if she had fun. She beamed. “I saw people looking at my project,” she told me, adding that she told one of her friends, “I have a fan club!”

This was Sophie’s first year. I’ve never heard of a school with a science fair that starts in kindergarten. When I was in school, there was only a seventh grade science fair, and that seems to be the norm among others I’ve talked to.

But at this school, any kid, K to 5, can participate. It’s voluntary, which is nice, because these projects are exhausting. Mostly because of the balance. You want your kid’s project to be good, but you also want the kid to do it all herself.

Of course, mostly the parents do them and pretend they didn’t.

Last year, Ray and I actually high-fived when we finished Annabelle’s science fair project. She got a first place ribbon (everyone gets a ribbon — you’re in the first, second or third place group) but it was a hollow victory.

This year, I swore it would be different. Sophie did need some help, and I drafted Courtney, one of our sitters, because a. I waited til the day before the thing was due and Ray was out of town; and b. I don’t know how to use my hot glue gun and I’m quite sure that while she’d love to try it out, that’s a science experiment we don’t want to try with Sophie.

So Courtney helped to glue and glitter and most important, mastermind. She’s a special ed major and really “gets” Sophie, so she had some great ideas on putting together Sophie’s rock collection. Sophie wrote the names of the rocks herself, traced the rocks in her “log book” and wrote a “report” what she liked about rocks. (Rocks are “cool”, “awesome” and “shiny”.) My most significant contribution was the title: “Sophie Rocks”.

And then there was Annabelle. That kid. My heart bursts. We’d decided on a fossil collection, but when the idea of changing the topic to Down syndrome came up, she jumped at it. As I think I wrote last week, Ray wasn’t so sure about that, and even asked, “Will Sophie have to sit in the cafeteria for a week?” (The projects are displayed all week, culminating in last night’s fair.)

But he played along, and before he left town he explained chromosomes to Annabelle. Thank goodness, since the aforementioned kid books we have about Down syndrome weren’t as much help as I’d hoped. (I never did find my copy of “My Friend Isabelle,” and even that one doesn’t get into science.)

Annabelle titled her project “Up Down syndrome”. Since this was a “demonstration” rather than a “collection” like Sophie’s, she was required to create a model. Luckily, Annabelle did not ask if Sophie could be her model. 

(In fact, she asked me for a photo of Sophie, but she tastefully glued it inside her report. I’d had uncomfortable visions of poster board covered with photos of Sophie, which I was prepared to let happen, since this was Annabelle’s project.)

For her model, Annabelle created a karyotype — a design of the 22 chromosomes of a person with Down syndrome, minus the 23rd, which determines sex.

We discussed making the chromosomes out of yarn, but I stumbled on some Wikki Stix in the craft drawer (check them out: www.wikkistix.com). Annabelle made perfect chromsomes out of them, including the noteworthy 21st. I Super-Glued them down (something else I don’t want to see the under-12 set experimenting with).

Then came the report. Here it is, in its entirety, as she wrote it:

“What is Down syndrome”? You may ask. Well I will tell you. You see, if you have Down syndrome, you have one extra chromosome (which is a thread like looking thing that tells your body what you look like and other things.) in your body. Which causes problems. See, I can’t really tell you why it causes problems. Because scientists have not figured it out yet. But I know that I can tell you lots of other things about Down syndrome! When you have Down syndrome you look a little different from every body else. And it takes a little longer to learn as well as you and me do. But even though they look different, it doesn’t mean that you can’t like the same things and be friends. I even know someone that has Down syndrome! And I know her really well because she is my sister! Her name is Sophie. I hardly notice Sophie even has Down syndrome. She knows lots of cool and elegant words like “I think not!” She really cracks me up! And Sophie has lots of friends in kindergarden! And all of her friends like her alot! Sophie has special therapies to help her up! She has a great life! the end

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.