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.
Kathleen M. Basi 
Saw your post on signing Time and just had to say hi. We have 3 children, our youngest is 4 and has DS. I coordinate a literacy program for children with DS, and I can say, without doubt, that Signing Times is one of the best gifts you can give your daughter. I see the long term results almost every day at the literacy program.
We, too, struggle with whether to “tell.” As you said, it’s like hanging out with a movie star in public. One of our greatest fears when we first found out was that people would stare at us. Now I know Erin would not want it any other way. I always just try to use every moment as a teaching moment. Best of luck to you and your family!
I’m glad to hear your thoughts on Signing Times. I’m a musician by training and I get music stuck in my head…very deep, complex music…so you can imagine how “It’s time to eat, eat, what a treat!” goes round in my head. I’ll wake up 5 times in the middle of the night going, “AAAACHK! GO AWAY!” 🙂 But Julianna and Alex both love it. We only have the first one right now but I expect to get some more shortly.
Thanks for sharing your thoughts on “telling”!
My mom laughs that she was in England, walking through the subway tunnel and had the Signing Times theme song come to mind. One of the side effects from babysitting at our house I guess. Signing Times has a CD for adults called Shine that has become one of my absolute favorites.
Also, since Julianna loves to read, check out the literacy program at Gigi’s Playhouse, http://www.gigisplayhouse.org. We’ve had such great success with Erin using it, I started a satellite program in our home town. Erin loves it and will follow me around the house with her literacy bag until I sit down and do it with her.