With all the making-way-for-baby chaos around here, posts will continue to be sparser than usual. I may be doing a fair amount of “Here’s an interesting thing I read” type posts for a while until he arrives and things settle to whatever the new ‘normal’ equilibrium will be around here.
An old friend of mine whom I haven’t talked to since before there was an Internet (!! – Behold the power of Facebook!) sent me this article. This NY Times piece – called “A Roller Coaster to Acceptance of a Son’s Autism” – offers a counter-melody to most of the articles published about autism these days, though hopefully this imbalance will right itself at some point.
Whereas most media attention is currently focused on young children with autism and everything that orbits around that, the Lehmann family in this article invites us into what I’ve taken to calling the ‘long view of autism’. The J-Man is about 3 1/2, and we tend to naturally fall in together with parents whose children are within a couple of years of him. I imagine this sort of thing happens everywhere.
Our end of the curve has a lot of people in it, and we congregate together. There are many benefits to this, of course, but there’s at least one major weakness. Our attentions and focus are often elsewhere while the people who are way further up the road from us – already where we may be heading years from now – are telling their stories.
What speaks to me most in this article is that the emotions she describes from the time over two decades ago when her son was diagnosed sound so much like the stories we tell and are still very near to. Parents of older autistic children and autistic adults are rather like our Magellans. They’re far beyond our horizon, exploring the other side of our world – a world we cannot possibly imagine yet for our children given how immediate everything in our lives is. They remind us that they remember where we are now, and then go on to tell us what adventures await us and how to navigate the challenges to come. And we would do well to listen.
Whether she intended this or not, I don’t know, but I think Lehmann’s article calls us to a reflection that many of us are reluctant to sit with for long. When we imagine our children 20 years from now, what possibilities do we see? Do they make you happy or depressed or worried or proud or any of an infinite number of emotions?
If we’re honest with ourselves, this often is a raw place within us we’d rather avoid right now. We barely know what we’re doing tomorrow let alone 20 years from now. The future is completely unknowable, our kids have very few years under their belts, we still feel like complete noobs at this, days can feel completely out of control, and our lives already feel full of too many uncertainties.
We want so much for our children, and we know their paths will not be easy. Does any of that affect how proud I am of our son? Absolutely not one bit. But there are many days where I’d eat a bowl of broken glass if I could ease his recently-escalating sensory struggles, among other things. We do what it takes to help our kids realize every possibility and potential that is theirs. Yet, no matter how much we’ve welcomed autism into the identity of our family, I’d bet that most, if not all of us, would give anything to know that things will someday get easier for our kids.
But we have those like the family in this article who have travelled one of those paths, and for today, hearing their story is comforting enough for me.