Wednesday, March 12, 2008


So, here's the deal:

Under what circumstances do we tell people outside our intimate circle of friends and family about E's Down Syndrome? These would be co-workers, casual acquaintances, in other words, people we may not know well (or with whom we're reconnecting) but who would touch our lives in some way.

Here's why I ask:
  1. We don't (and wouldn't ) introduce family members or describe them with an, "Oh, that's my wife, she limps." (I don't, but you get the idea). Why should E's diagnosis merit preemptive mentioning?
  2. There will be enough preconceived notions about what a child with DS will (not) be able to do, why trigger these in someone who won't really have any personal interaction with her or us? The DS is just one part of who she is and what she will be able to do.
  3. When we tell people, we have to deal with their baggage about it, not just their preconceptions about Down Syndrome and what it means. Mostly, telling has been a positive experience with people sharing stories about people they know with DS and so on. We have, though, had some reactions from within the intimate circle where we ended up defending and justifying our decision. We know that we will have to educate people about the realities of DS, but we expected support and understanding. When we didn't receive it from those closest to us, it's made us a little defensive about telling others who don't know us. Why take on someone else's baggage about the decision when we have our own?
  4. If we don't tell up front and the person later finds out, will we ruin an opportunity to connect with someone as I did when I told M's dance teacher? In telling, I found out that the studio's owners have been thinking about offering a dance class for kids with special needs. Yay!
  5. If we don't tell up front, will the person feel like we're hiding it or are ashamed of E? I tend to err on the side of telling people up front so that if they see us, there's no question or awkwardness as they try to figure out if she has something wrong* with her. She has obvious physical characteristics of Down Syndrome, but without stating it clearly, people may wonder.
    not that there is anything wrong, just that she's not genetically perfect. She's perfect to us just the way she is.
  6. Even though we don't want to make a big deal about it, at the same time, it is a factor in our lives and in controlling who is told and how allows us to control the message, as it were.
For me, I think the situation will have to determine how/if the person is told.

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