It’s not something you hear a parent say every day. It’s not “my daughter has a dental appointment today” or “my son had a meltdown today” or even “I had an IEP meeting this afternoon.” But the words ran over and over through my mind as I drove home: I moved my autistic son to a supported living home today.
Nigel’s 18 now, diagnosed over fifteen years ago, started talking at age five and a half. He has an emotional delay of about five years and the executive function skills of a typical seven-year-old. He has received various therapies since before the age of three and received a modified diploma last month. He likes to read Jules Verne novels and National Geographic magazines. He loves listening to Creedence Clearwater Revival and Bob Marley. He loves watching action/adventure/disaster movies and wants to go to film school and work for Disney.
Yes, he is all of those things and more, the good as well as the challenging. He has epilepsy (the kind with grand mal seizures) and all of the doctor appointments, lifestyle changes, and medication issues that go with it. He also has bipolar and all of the tribulations that go with that. I won’t go into detail about his history of aggressiveness and other behavioral issues. After years of careful observation, intervention, and lengthy, exasperating medication changes, we have successfully resolved most of these issues. Why then, I have been asked, have I still pursued placing him in a supported living home?
In a word, need. After over thirteen years of single parenting a special needs child, I need this. After a lifetime of subsisting on the scraps of my attention and having to watch out for his older brother, my younger son needs this. And after coming to terms with one disorder after another and grasping at whatever semblance of semi-independence there is for him, Nigel needs this. And he wants it. For months we researched supported living homes in our region and found a highly regarded one that he liked that happened to have an opening right when he was ready to move. Right place at the right time.
Still, as I drive back from my son’s new home, forty minutes away, the guilt creeps in. The feeling that I’m not doing what I’m supposed to do as a special needs parent, that he’s supposed to live with me until I die and I’m not honoring that unspoken code. But why should we think that way? Is it pride? Is it duty? Is it love? Is it just…playing the hand we were given?
Yes, it’s probably all of that. But I say if we can trade in one of our cards so that we have another option, we shouldn’t feel regret at doing so. We still have the same hand – we can just do a little more with it now. Fulfill some needs. Maybe things will turn out even better than we’d hoped. And if they don’t, we can make changes. After all, we want the same basic things for all of our children, with or without disability. We want them to be safe and we want them to be happy. And if those things can be achieved outside of our home, there should be no chagrin, no second-guessing ourselves. There should be a sense of accomplishment, as with any other milestone.
This is my child, whom I’ve nurtured and shepherded into adulthood, like any good parent. We’ve experienced some different circumstances along the way. But just because I may no longer be his primary caregiver does not mean that I’m not going to be involved, that I don’t wonder every few minutes how he’s doing, if my trust was well-placed, if he’s safe and happy. No matter how confident I feel about my judgment, there are no guarantees. Some of us are not satisfied with that, but I cannot live in fear, and neither can Nigel. If there’s one thing he’s taught me, it’s to never give up. And I won’t. Whether he’s living at home with me or living in a supported living home without me, I’m still his mom. Nothing changes that. Nothing changes the love. Nothing ever will.