To tell, or not? That’s the question.
When Julianna was a newborn, people would ooh and aah, as they do with all babies, asking her name and when she was born, etc. For about two weeks, we felt compelled to tell everyone that she had Down syndrome. But it felt like we were apologizing for her, so we quit mentioning it at all.
As she got a little older, though, I began to get the feeling that people were hesitating, wondering “Does she, or doesn’t she?” To mitigate the awkwardness, I started mentioning it again, very briefly and matter-of-factly, when people would ask how old she was, or why she needs glasses. She’s so clearly behind in size and developmental age, it can be confusing. Besides, most people know very little about Down’s, and she’s a great ambassador—cute, engaged in the world, interactive—I figure it’s a good chance for people to learn that Down’s is nothing to be scared of.
But lately I’ve been thinking. She really doesn’t have a strong “look” of DS, and maybe I’m being hypersensitive—after all, everybody asks how old your kids are; it doesn’t mean they’re wondering if she has a disability—and maybe I am apologizing for her. So this morning, when a mother at the play area at the mall opened a conversation, I decided not to mention it.
My resolve lasted five minutes. I managed to talk about Alex being off the top of the chart through babyhood, and Julianna being off the bottom, without bringing it up. I managed to explain her glasses. But eventually, I gave in.
The trouble is that everything you talk about when you chat about kids is based on growth, development, and personality, and every one of those things is intimately connected with Julianna’s chromosomal giftedness. J Particularly the first two. Which is worse—to act like the elephant in the room is on a rampage, or pretend that it’s not there at all?
I don’t have an answer for this quandary. I’d love to hear how other parents deal with it. For the moment, I do the best I can by mentioning it without making a big deal of it.