I’ve always loved ritual. Not sure I always knew that’s what it was – ritual – but I knew I loved rhythm and seasons and the familiar. New places and new experiences did not appeal to me as a child. Change made me nervous and surprises caused stress. I used to tell my parents I wanted to grow up to be Louisa May Alcott and live in their attic, writing stories from my imagination (not my experience). There are days I still think that life would suit me.
So when people associate our oldest son’s need for routine with his place on the Autism spectrum, I think, “Maybe … but maybe he got that from me?”
This is the time of year when I’m forced to focus on our son’s deficits – to assess and prioritize and figure out what can be attributed to the spectrum and what’s typical for a 10-year-old boy. My perpetual mom guilt is already on overload as I spend the few hours I have with him each day reminding him to do all the things kids rarely remember to do – clear his place, chew with his mouth closed, hang up his towel, pick up his shoes. So, to pile on top of that a list of things he needs to work on simply because of who he is … it just feels wrong.
Where does Autism end and our son begin? Are we redirecting his behavior because it’s best for him or best for the rest of us? I know I’d be fighting a losing battle to drop all of this and start raising a free-range kid. I know that he has a lifetime of living in and with our culture (unless he asks for the Alcott attic option). And I know that the school, although well meaning, will only give him what I can prove he needs, as they try to use their too few resources to support too many kids (and ours is doing so much better than most).
So I strive to embrace the IEP ritual, to fill those forms out with every quirk I can find that might possibly qualify him for additional support as he navigates his school day. If I had my way, I’d be a stay-at-home parent, home school both of our boys, and cushion them in an attic of my own making, where their personalities are embraced and the only reference made to a spectrum is when we talk about colors. But until I can make that happen, his IEP is one of the best things we can give him. And on my more positive days I remind myself, that’s also something he gets from me.