Julianna 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!”
That 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.
Kathleen M. Basi 
Oh yeah.
What a profitable day (at the conference) for you. It is a blessing to share it with others. Thank you.
Really interesting.
This is a good, thought provoking post. It’s true about parenting all kids…sometimes (most of the time) it’s easier to let them take the easy way out because it’s more work for us! I’m sure that is only more true in this situation. Yay for conferences! Is there one about parenting obnoxious redheads? 😉
Oh my. What an eye opener for you huh? I so admire you. You are so open and honest, even with yourself. Your children are blessed. Prayers and hugs.
Yup. If you want your kid to be able to get their own juice, you have to quit getting it for them.
Better to learn now than too, late.
But I really do love Julianna’s hugs.
Me too. 🙂 The grownups always do…but therein lies a whole different set of problems!
Wow, thanks for this. I was thinking about this with my 8 yr. old just yesterday. His older brothers do more chores around the house than he does, not because he isn’t capable but because it’s easier for me to let him get away with it. He can whip through chores and homeschooling when he’s motivated. So he’s perfectly capable but I don’t assign him stuff because that creates more work on me. Nice reminder!
When I make these points to other parents in the autism community, I am usually a pariah. I have had to tell teachers at one time or another, “Do not allow Shelby to touch other children.” And for her that doesn’t mean smiling and saying in a cute voice, “Nice hands please!” It means physically removing her hand and saying “No,” in a firm tone. She knows when she’s doing something wrong and I deal with her the same way I do with my boys. Acceptance means a lot of things but I don’t think it means allowing my child to get everything she wants just because of a special need. Of course, independence brings with it its own challenges as we are living now…good luck, It’s such an interesting road to navigate!
I’m in awe of your parenting. From my limited perspective, my instinct is that you’re right: you’re doing her no favors by giving her special treatment when it’s not needed. The idea of a grown child with DS seems daunting–how much freedom? How little?–but these are questions we all have to answer about our kids, of course. So interesting.