My Life With Down Syndrome

My life as a parent of a child with Down syndrome involves…

1. Hilarious, irrational leaps. Take this, the opinion paper she wrote for school this week.

2. A compartmentalization of things that other kids do in an integrated way. For instance: writing. In elementary school, writing is practiced in tandem with things like opinion papers and spelling. But in talking to Julianna’s teacher at her parent-teacher conference, I realized that when they really need to test her knowledge, the adults act as her scribe, because—as you saw above—writing for this nine-year-old girl is a challenge all its own.

3. A certain difficulty in pinning down “age-appropriate.” When Alex was her age, he was treated much differently. Actually, her 7-year-old brother has more responsibility and expectations placed upon him than she does at age nine. I’m constantly trying to discern what’s appropriate to ask of her and what is the appropriate way to treat her. She doesn’t understand as much—but I often suspect that she understands more than she wants us to think she does. The thing about having a high EQ and a low IQ is that you know how to manipulate without even realizing you are doing it.

4. A bigger difficulty in pinning down “socially appropriate.” Julianna has a gift for love, and many, many people respond to her with joy. She can brighten people’s days. We like to give her as much freedom as we can, because she is such a great ambassador for Down syndrome. She’s high functioning and cute and enthusiastic about, well, everything.

But it’s not universal. She lights up whenever she sees babies or girls her size, and she wants to be friends. But not all mamas are okay with random girls coming over and loving on their babies. And not all little girls want to be attached to by a child with a disability. Not long ago I witnessed a girl close to her own age—someone who knows her well—react to having to stand beside Julianna and hold her hand with the classic “Ugh, I don’t LIKE her” look that all of us seem to know instinctively. I wanted to cry.

5. Having to keep a close eye on her. As hard as it is for her to get around, and as many $4500 inserts and 7-and-counting orthotist appointments as it takes to get her mobile, she can be freakishly easy to misplace! This past weekend, for instance, we went to a display of gingerbread houses, and when it was time to go, I had a lot of trouble separating her from the “friend” she had attached herself to. I did that before rounding up the boys, both because I knew it would take some time, and I didn’t need Michael Mayhem running around while I was doing so. So once I had Julianna, we went to get the boys. But Nicholas was stubbornly insisting he had to finish coloring this one craft. And by the time I got him convinced that it was time to go—even though it took only about 2 minutes—Julianna was gone. I did a quick sweep of the room and then went out in the hotel lobby and asked the staff if they’d seen her. Because she’s kind of distinctive, you know. Nobody had seen her.

Pretty soon we had four staff members searching the hotel bathrooms and the larger premises, while I went around the displays again in earnest. And then, having eliminated the indoors, we headed outside, where we found a staff member coming back with Julianna—who, knowing it was time to go—had simply gone by herself out to the van!

6. Hearing a lot about fire drills. Drills of any kind, actually. She’s rather obsessed with them, in fact. We’re not sure if it’s fear of the noise, or just one of those things.

7. A very streamlined view of life. She loves music, books, babies, and people. And Sofia the First. And she’s starting to get computer literate enough that I keep coming to the computer and finding the search “Swofia hte frist,” with the distinctive purple-gowned little girl.

That’s a sliver of what my life is like with Down syndrome. Are there other DS parents who’d like to share what your “slivers” look like?