Because I don’t want my daughter to be ‘Peter Pan’

Christmas  Break 037Julianna likes to run away.

Actually, she doesn’t really run, and to say she “likes” it implies that she does it on purpose, to get away from us–neither of which is true. She simply thinks the world is there for her to explore, and it doesn’t occur to her that staying near her parents is necessary. Julianna is so secure in her place in the world, she just assumes it’s safe as long as, you know, there’s not a dog around.

Julianna also likes to hug people.

In this case, the word “likes” isn’t quite strong enough. This girl is the poster child for the stereotype about people with Down syndrome wanting to hug people. And it’s becoming a problem, because increasingly she wants to hug children her own age and younger. The children her age are growing into an awareness of personal space and appropriate boundaries. The little ones just feel threatened.

This weekend I went to a one-day education conference presented by the Kansas City Down Syndrome Guild and Down Syndrome Education International. I went seeking strategies to help Julianna learn math. I got those, too, but the biggest thing I took away from the day was a crystallization of awareness that these behaviors, while they are quirks of her personality that are cute and sometimes even lovable, have to be addressed.

Imagine a tiny British woman with steel-gray hair who raised a child with DS in the days when children with DS were institutionalized, and managed to raise her well enough that her child is living independently in a committed relationship. Imagine what sorts of things that tiny British woman would have to say on the topic of appropriate boundaries and behavior. “If your child has a behavior,” she said, “it’s because you let them. You wouldn’t accept that behavior from your other children. Why do you accept it from your child with Down syndrome?”

Uh, ouch?

Because she’s right.

We assume Julianna doesn’t understand a lot of things because we give her the option not to. She tends to shut down and not respond and not respond. But this particular presenter laid it out straight: “You’re trying to get them to answer a question, and you re-prompt, and you re-prompt, and they’re still thinking!”

J closeupThat was in the context of math, but oh, dear, it’s true across the board. We equate no response with not understanding, when the truth is we didn’t give her long enough to respond. We’re willing to wait three or four seconds, but not ten or twenty, if that’s what it takes.

“There’s the chronological age, and there’s the mental age,” the presenter said. “We tend to treat people with Down syndrome according to what we think their mental age is. But their emotional needs are not delayed. A teenager with Down syndrome has the same hormones, the same desires, the same needs as her peers. The stereotype is the ‘Peter Pan’ thing–that people with Down syndrome will be perpetual children. That’s only because we don’t let them grow up.

You know she’s right? Because letting them grow up opens a whole Pandora’s Box of scariness and complication that we aren’t sure how to handle.

In the two days since coming home from this conference I started trying things with Julianna. Nicholas uses the computer, for instance, but I’ve never had the energy to try to get Julianna to use the mouse. You talk about a fine motor skill. Yowza. I tried to have her click around to fill in an online reading project for school, and it was everything I expected.

Then I put her on a math program they’ve been using at school. I had no idea how it worked, and there were no instructions, so instead of trying to control the process, I stuck her in front of the computer on her own to see what she’d do.

That girl went to town. She knows how to click. When she cares, when she’s motivated, she’s perfectly capable of manipulating a mouse.

The long-term implications of all this are a post of their own, and one that will be much harder to write. For now, I’m working on my own behaviors and expectations where Julianna is concerned. It’s easy to make her do less than the boys, because it’s hard enough just to supervise them, let alone her. But if I want her behavior to change, mine has to change first.