posted Tuesday February 14th, 2017
For the first two years, Ray repped the family at middle school Career Day, talking about life as a journalist.
It was a good thing. Really, what would you rather hear about — the time Ray volunteered to be Tased at the hands of the Mesa Police Department or the last dozen “now open” restaurant stories I edited?
I thought so. The kids loved him. And so the stakes were high when Sophie asked me to come instead this year, her final year at this school. She wanted me to talk about the book.
And, as it turns out, about her.
“But Soph,” I asked, “what will I show them?” I didn’t even have a Power Point. There’s always a police officer with a dog at Career Day. This year someone brought a Tesla.
“I will be your prop,” she answered, and proceeded to scam her way out of dress code last Friday so we could dress alike (black dresses, white sneakers, glasses) and visit three classrooms stuffed with middle schoolers.
The night before Career Day, Sophie cuddled up next to me in bed and began a familiar refrain, one I hadn’t heard in quite some time.
“Mama, I don’t want to have Down syndrome,” she said in a small voice. “It makes it hard for me to get around.”
Sophie’s perfectly ambulatory, strictly speaking, but I knew what she meant. Navigating middle school — and life in general — is tough for her. Tougher than it is for most of us. Yes, we all have our challenges. No, most aren’t on the same scale as Sophie’s.
The next morning before school, I told Ray about the conversation and wondered if Career Day had brought this on.
“Of course it did,” he said. “I don’t see why you want to talk so much about her disability.”
But here’s the thing I realized once we were in the thick of Career Day. It’s Sophie who wants to talk about it. I am now worried I haven’t talked about it enough.
In order to discuss the book, we really had to begin with a definition of Down syndrome. Out of 100 or so kids, not one could say what it was. Not even close. “Um, is it something in your blood?” one girl asked. Hey, no judgement. I didn’t know either when I was their age. Mostly because I’d never met anyone with it.
Looking back, I wonder if anyone had ever addressed with these kids the fact that their classmate — in some cases from kindergarten on — is profoundly different? The same in many ways, yes, absolutely, but also not the same. Had they ever even heard the term Down syndrome?
I don’t know.
Last month, I ran into the principal from Sophie’s elementary school and he asked me to name one thing about middle school I wish had been different. I didn’t hesitate.
“The kids,” I told him, explaining that Sophie hadn’t really made any friends in the last three years. “They aren’t mean, not as far as I can tell. They’re indifferent.”
We agreed that it’s the age — middle schoolers are self-conscious and self-involved. Not interested in making friends outside their circles.
Maybe it was my imagination, but standing in that classroom with Sophie on Career Day, I could feel a sense of relief from both my kid and her peers as I explained Down syndrome in very simple terms, as the class came to understand why Sophie speaks differently and sometimes takes longer to master a skill (or doesn’t master it). As I talked, I felt Sophie at my side, nudging me.
“Tell them what I told you last night,” Sophie whispered.
“Are you sure?” I whispered back.
She nodded hard.
“Sophie wants you to know that she doesn’t always like having Down syndrome,” I began. Feeling defensive, I looked around, eagle-eyeing the crowd for snickers or eye rolls.
Instead, the kids were quiet and respectful, watching and listening.
“Here’s the thing,” I said, making it up as I went along. “We all have something about us that we’d like to change, right? Is there something about you that wish was different?”
Around the room, heads began to nod.
It didn’t feel like I said enough, but I wasn’t sure what else to say.
I read an excerpt from the book about Sophie’s kindergarten experience and she handed out book marks. The kids asked some questions about my day job as a newspaper editor. I wasn’t the most exciting speaker of the day — I could hear a Marine grunting and singing in the room next door as I read aloud. But the kids applauded politely; Sophie was clearly thrilled.
And as I left the last session and headed out to my car I noticed someone had scratched a heart onto a classroom door. I decided to take it as a sign — a good one.