If you do a search for quotes concerning not being able to pick your family (like I just did, for this post), you’ll actually find that there’s not necessarily just one big famous quote, but a bunch of them, all saying the same thing (“You can’t pick your family…”) but with different perspectives on that fact (“…and that sucks, because most families are dysfunctional and horrible!”, or “…because God picks them for you!”). The inflexibility of choosing your own family seems like the constant, like a universal truth.
Parents of special needs kids know better.
Our family members try, some of them, maybe most of them. Some get it impressively right; others blow it catastrophically. But the neurotypical, unimpaired members of our families are ultimately no more or less inclined to become part of a support network for your special needs kid than anyone else in the big dumb world. And perhaps it’s not fair to expect them to be.
I’m not sure what special needs families did before the internet. Probably just sat around thinking they were alone, despairing and trying to figure out what to do without help from anyone except maybe a doctor. (No offense to members of the medical community, but speaking as a parent, I have to say, you’re not generally very helpful when it comes to helping families cope with disability. Work on that, please.) That world sounds awful, and it’s a world that a lot of families still find themselves entering when they have a baby with a disability, or get a diagnosis down the road like we did. Outreach to new families of kids with special needs is a huge part of the whole mission for advocates.
But here and now, living in The Future, the internet has created a world of possibilities for support. There are kinks, of course. For every supportive family resource, there are little villages of virtual curmudgeons ready to chuck bombs at your zone of support. But in general, it has become easier and easier for parents and families to find each other. (I guess the curmudgeon villages provide the same service, for the curmudgeons.)
Out of these online connections, we build families. We reach out, we meet people who share our concerns, who live on our world in some way. We meet them, we learn who they are as people, not just parents of kids like ours. We meet their kids, our kids meet their kids. They become family; their kids become as ours. Families are built; they are “picked”, as it were, and the community is strengthened.
We build families out of the people we care about, and the people we need. They’re not always other people with children with disabilities. Schuyler’s godparents aren’t even parents, but they are exceptional educators who love Schuyler and who understand her and her needs. The point is, our families expand, out of necessity, and our lives and the lives of our children are the richer for it.
It’s not that the families of kids with special needs are like the Island of Misfit Toys. Not exactly, anyway. It’s more that like the best families, we are perhaps Fated. Fate leads us to the people we need, circumstance brings us into orbits around each other, love builds our new families. There aren’t always a great many comforts in our world. Sometimes we simply need to make them out of what we have. Fortunately, what we have is extraordinary, if only we trust in Fate to lead us to it.