Having a child with Down syndrome is sort of like being a member of a really small religion… like say, the Baha'i Faith (which I grew up with). It's all so small, so isolated, so misunderstood, so much explaining overall to do that somehow when you connect with another like yourself, you connect in a way that is must be like, wrist-rubbing your blood in a secret club or something.
Shaking hands, knowing a password or a head nod, a wink or twitch that shows you are a part of this tribe.
Then you get to talk code to one another, usually full of acronyms that sound like passwords. LSA; IEP, ST, OT, PT, what-have-you.
You are instantly accepted. Immediately a part of the group.
While dealing with the stupid hurdles The System had set up for me jump through (perhaps just to see how high I CAN leap?), I met a woman, an administrator in said System and immediately noticed her chromosome tattoo (among her many, many others) . I pointed at the tattoo, nodded; she looked at Moxie, nodded. Let me tell you something: those hurdles came down fast.
It is amazing to me how we embrace each other within the Down syndrome community. Even in Mexico – when I chased down the little girl at the playground, the small boy in the supermarket – I was immediately accepted by the parents (once they saw Moxie, that is, and realized I wasn't some American psycho freak). Here too. I chased down a young man in who was shopping in a grocery store, talked with him and his Dad at length. Or when I haled the lady with the little girl with Ds at the hot dog joint (you are seeing a pattern here, aren't you?). Yes. I accost people. And they accept me, with open arms.
With most parents of kids with Ds, I get the feeling that if I asked if I could camp out in their living room floor for a few weeks, their only concern would be how comfortable I might be, and would offer me a guest room if they had it.
This, I have to say, is a fine community to be a part of. It's welcoming, accepting, loving. Good People are in it, the kind that you'd want to call your own.
And then – the online communities! Talk about tight-knit forums, groups that hold your back (I don't want to put links because of privacy – but if you would like to know/join, just email me – email address in the 'about us' page). I've made real friendships there with people I've never met.
Which brings to mind that interview that Dorie, of Tuesdays with Dorie fame. The one she gave in Oprah. She was asked how she felt having all these "strangers" come into her kitchen and cook with her and she laughed and said something along the lines of, "strangers? these people aren't strangers! I've been cooking with them online for years!"
That's really how I feel. I tune in to my friends' blogs and facebook status updates with an eager delight that has everything to do with a connected spirit and nothing whatsoever with something so trivial (in this day and age) as logistics.
Yet still. Like Moxie with her friend in the mirror, it would be *really fun* to actually physically meet some day, wouldn't it?
Practice our own actual secret handshake and all?
Note: first published on this blog on July 1, 2011