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Sophie’s Rules

posted Tuesday September 27th, 2011

Sophie and I played Uno this morning. I’d never played before — mine was more of a gin rummy family, growing up — so I’m not really sure I learned the traditional rules of the game. But I have to say, she did seem to have a command of it, instructing me regarding colors, numbers and symbols.

The game was rolling right along when suddenly, Sophie grabbed a bunch more cards that by this time I realized were not part of her turn.

“Hey!” I said. “That’s cheating!”

She just smiled and explained, “I wanted to win.”

Then she gathered up the cards and asked me to deal again.

As I shuffled, I wondered whether I should have put my foot down, insisted she play by the rules. But she was playing by the rules — her rules. That’s fine in an early morning game of Uno with your mom, I get that. But it doesn’t translate well to the real world.

Last week, the school nurse called me. Sophie had shown up without permission in her office for the second morning in a row, insisting she had not eaten breakfast.

“I gave her some milk and crackers,” the nurse said, “but I figured I should call and ask you what’s up.”

I assured her that Sophie was not starving; that morning before school, she’d had a Carnation Instant Breakfast shake and at least half a dozen mini pancakes.

We laughed, then it got serious. Sophie’s not to be going AWOL from the classroom (albeit with the aide on her tail), for obvious reasons. I knew she’d escaped once already that week, because last week Sophie’s clearly exasperated but ever-effervescent teacher had announced it was time for a Behavior Plan, in the form of slender purple slips printed with each of Sophie’s class times and a space for a sticker if she’s been good — or a note from that particular teacher, if she hasn’t.

She got quite a few stickers last week, but there have been some notes, as well. Yesterday’s slip was not good. “Sophie struggled to follow directions. It took about 10 minutes to re-direct her,” the special ed teacher wrote.

Ten minutes?!

And from her reading teacher: “Sophie had a very tough time listening today. She took things that belonged to me and refused to give them back.” In the end, the note explained, the aide had to take Sophie into the hallway to read her story.

If she wants to, Sophie can pay attention just fine. I know that. On Sunday, I watched her follow instructions for a full hour in a dance class with 40 other kids (all “typical kids”) as she auditioned for a holiday performance coming up, one she really wants to be a part of. (More on that later this week when we find out if she got the part.)

But how do we motivate her 24/7? Should we even try? Crappy “Way to Go” rainbow stickers aren’t working, and I’m not even sure paintbrushes have kept their appeal.

Of course, just when I give up, Sophie proves me wrong. We played that second game of Uno without incident. At one point she looked over at me and motioned to my hand.

“Say Uno!” she announced, excited.

I looked down, not realizing I only had one card left.

“Uno!” I said.

“You won!!!” Sophie said, beaming. “Let’s play again.”

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Tags: Filed under: Down syndrome by Amysilverman

2 Responses to “Sophie’s Rules”

  1. Oh, sometimes I feel like I live from each of these redeeming moments to the next (not that my son needs “redeeming” you understand, but, you know). I just find it SO exasperating when you know your child is capable of something but just not motivated to do it. It’s worse, for me, with my son than with my daughter because I feel, rightly or wrongly, that he is being watched and judged so much more closely than she is. While I am happy to blame her behavior on being a typical two-year-old, I don’t want people thinking he is misbehaving just because he has Ds.

  2. jaida, i know exactly what you mean!

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