“Which bone is the extra chromosome in?”
This is the question I was called upon to answer last night. It was 7:43p.m., and my day had been a nonstop madhouse, beginning with an 8:30 a.m. flute rehearsal and culminating in a mad rush from 4:30-8p.m. to get Julianna to and from dance, everyone fed, dishes done, floor swept, haircuts given, forgotten recycle-art project built, and baths taken. (Christian had to take Alex to baseball.) I was shot by the time Nicholas opened his mouth after bath.
Hopefully, he’ll forgive me for laughing at the question.
Christian and I made a conscious decision to start talking about Down syndrome as soon as we could do it without crying. Alex, of course, got the bulk of the intensity, because he was around when it was all fresh and Down syndrome was the only thing on our minds.
Now that Down syndrome has faded into the tapestry of normal life, the topic is more “in the air” than a formal conversation. Sometimes I wonder if Julianna’s younger brothers are really getting the message. On the other hand, it’s a comfortable enough topic in the house that Nicholas feels no inhibitions about asking “which bone is the extra chromosome in?”
We’re pretty active in the local DS community. I am the primary Facebook page person, the primary person who talks to med students (Christian joins me whenever he can, and there are two other women, but I do most of them), the primary point of contact for hospital social workers and Early Childhood sped teachers, and the point person for our bimonthly social hours. My fellow co-coordinators have their own points where they take lead, but these are mine. We’ve been in the newspaper (here, too) and on TV.
I used to worry that Julianna would feel a stigma attached to all this background noise about DS. I know that come adolescence, it could still happen. But at least for now, Julianna is eminently, beautifully comfortable in her own skin and in the superstar status accorded by her extra chromosome. What disability? She’s got a fan club and a retinue of adults at school. She thinks she’s a starlet.
To some extent I think Julianna’s comfort is simply a gift of her nature. But I also think, in part, that it’s because we’ve made sure everything we say about Down syndrome remains emotionally neutral. The word “retarded” does not get used in our house, even in relation to Julianna, to whom it actually applies (and incidentally…..)
We don’t even talk about her “disability.” We simply say everybody has 46 chromosomes and Julianna has an extra one, and because of that it’s harder for her to learn things. Period.
Kids are wonderfully malleable. When you treat something as normal, they view it that way. Or perhaps it’s more accurate to say, when you don’t get all twisted up in your own emotional hangups about people who are “different,” kids are able to accept it as something factual, without a negative connotation.
In any case, it’s only the adults who are uncomfortable with these conversations, and if we as adults can just get over our own biases, the next generation won’t pick them up in the first place.
Speaking of biases…just to make sure you don’t miss the point…
Much the way we treat Nathaniel’s hemophilia. It is our normal, and so infusion time just is part of what we do every other day, or if there is an accident. Nathaniel even helps with his infusion at this time, pushing the syringe to send the medication into his system. No big deal. Jacob needs to wear an eye patch once a week for his amblyopia, Caitlin wears a ponytie to keep her hair out of her face, and Nathaniel gets a fusion of clotting factor. That’s how we roll.
On Fri, May 1, 2015 at 8:48 AM, Kathleen M. Basi wrote: