There was an interesting exchange on Facebook today. It began with a review of Kelle Hampton’s soon-to-be-released book, Bloom (not an extremely favorable review – and how did she get an advance copy, anyway?!), and segued somewhat into the topic of this whole “Down Syndrome Parenting Community.”
I dunno . . . I think the concept of all of us parents who have kids with Ds being a “community” is a bit of a myth, or at least a stretch. I think there’s this notion that because we have that in common, it creates this automatic bond between us all. I think at some point, I even believed it. For a while, I was even part of this super secret group of a handful or two of Ds moms. At first it was really cool – even though several of us didn’t know one another at all before the formation of the super secret group, we did sort of instantly bond – or thought we did, anyway. But as time went on, skirmishes arose and things got ugly and it didn’t work out (well, actually, for all I know, they’re all still going strong, but I parted company many moons ago). Because the fact of the matter is, (a) groups of women notoriously don’t get along for the long-term (that’s my theory, or observation, anyway – women are emotional and competitive and catty – not that I don’t think women are awesome! Heck, I am one!), and (b) a group of parents of children with Down syndrome is as varied and diverse as any other group of parents.
Yes, having a child with Down syndrome gives us some common ground . . . sort of. Children with Down syndrome are also very diverse and varied, so it’s not like every experience raising a child with Down syndrome is the same. Many of us experienced similar emotions upon receiving our children’s diagnosis; many of our children have experienced the same or similar health issues; on some level, many of us can empathize with each other about the fears and frustrations we experience, and the pain we feel in the face of society’s prejudices towards our kids; many of us have fought the same battles with school districts and can share information and advice with one another regarding things like education and services. But very often, that’s all many of us have in common – and while that may seem like a lot on paper, in the grand human landscape of life, it’s often very little. We still all come to the table from diverse backgrounds and belief systems, and we bring with us our own idiosyncratic personalities, values, parenting philosophies, and dreams. It’s not like when you join this “club,” you’re a dues-paying member who takes a pledge to uphold certain ideals.
My point? It would be nice if we could all respect each other, but to think that we’re all going to like each other all the time – or even feel supportive of what other parents are putting out there – is unrealistic. I know I’ve got my detractors, and yeah, it doesn’t feel too good to know that there are people in this “community” who don’t like me or get me. Likewise, there are parents out there I just can’t relate to, and some I just plain don’t care for. (And most of them I can just ignore – except for the ones who have a constant spotlight shining on them – those are hard to ignore.) The awesome, thing, though, is that there are parents out there who you find you actually share more common ground with than just having a kid with Down syndrome, and that’s where actual friendships take root. And that’s the most I think we can hope for on this twisty, turny path.