I promised a couple people in the comments on my questions post that I’d write more about it. And I meant to do that right away, but busy and then sick. So! Getting back to it now.
I didn’t mean to come across in that post as feeling offended by those questions, because I don’t! I just meant that the answers to those particular questions aren’t really informative about what life is actually like with a child with Down syndrome. I think most people ask questions to try to understand more what my life is like, and those questions don’t really answer that. I’m not going to give you a list of questions not to ask, because I’m pretty happy to answer ANY question. AND I’m extra glad when someone feels comfortable enough to ask ME something that might be offensive to someone else, because then I can try to help them avoid that.
Anyway, in regard to the first question, “did you know ahead of time?” I’m not especially fond of that wording because of the subtext that can exist, the unspoken, “would you still have had the baby?” If you want to ask someone this, I recommend asking, “When (or how) did you find out?” which leaves more room for a story to be told. If you ask me when I found out I can explain that the ultrasounds all looked good but that I worried. That I wondered when he opened his eyes. That I knew what the nurse would tell us when she started asking questions. There’s so much more to be said than, “No. No I didn’t know ahead of time.”
Some words on, well, words. Something I read a lot about when I first had Daniel is using “people first” language when talking about people with Down syndrome. For instance, say “a kid with Down syndrome,” instead of “a Downs kid.” I am fairly unbothered by this distinction, although I understand why it’s encouraged. I think people often say something like “the Downs kid” in the same way they’d say “the red head kid” or “the short kid.” It’s a descriptor, and yes, Down syndrome is an easy way to differentiate one kid from many. The problem, I think, comes with the connotations. I think in general you say “Down syndrome” and people jump to the negative. Anyway, the point of “people first” language is that anyone with Down syndrome is a person first. It’s a good message.
April asked if you can think of Down syndrome as being on a scale, and the answer is: not really. Unlike the Autism spectrum, which includes a whole range of conditions, Down syndrome either IS or IS NOT. Either the third copy of chromosome 21 is there or it isn’t. (Yes, I’m ignoring Mosaic Down syndrome here for ease of explanation. It accounts for 2-4% of Down syndrome cases, you can read more about it here, if you’re interested.) Now, YES, there is a range of abilities for people with Down syndrome. Think of it as equivalent to the range of abilities that exists in the typical population. Some people are smarter or more talented. Some people struggle with things that others find easy. Having Down syndrome doesn’t make everyone the same, it just shifts that range over a little. I hope I’m explaining this well. Another thing is, genetics is still playing a big part here too! Which is why Daniel looks so much like Will, even though he has Down syndrome. So genetics will also play a part in the rest of his life too- what he’s good at, what he struggles with, where his talents are- just like it will for our other kids.
And, getting back to the original point of this post (maybe? I think?) Brian and I really encourage all questions about Down syndrome. I’m especially fond of answering scientific questions about what exactly Down syndrome is, or how it happens. (And MAN I’ve had people think some crazy things.) As long as people aren’t being rude I’m good.
So. Any other questions?