It’s only been a month and a half since my son Jonah returned from sleep-away camp and I’m already feeling nostalgic for that brief August interlude when he was on his own and my wife Cynthia and I were on our own. Not just because it was a break for us from the rigors of parenting a child with autism, but it was a break for Jonah from the rigors of being parented by the parents of a child with autism. We can make for a tense trio at times. It’s not just that we all worry about one another; it’s that we all feel the weight of being worried about. In any case, Jonah thoroughly enjoyed his eleven summer days – and ten nights – away as did his mother and I. We’re all especially grateful for how wholeheartedly Jonah was accepted into his summer camp community.
But the summer is over. Fall is here and with it comes a whole new set of worries. After thoroughly enjoying camp, Jonah, who’s 14, is back at school and enjoying it a lot less. Jonah attends a special needs school, here, in Montreal and for most of the last month we have been receiving reports expressing concern about some of the problems he’s having re-adjusting to the routines and pressures of the day. What has followed is what seems like a daily series of phone calls, emails, and texts back and forth and, along with it, an escalation of worrying.
Then, the other day, Cynthia and I arranged to meet with Jonah’s teacher, his psychologist, his social worker, his behavioral technician, the school’s educational consultant, and the principal. A lot of good will and hard work went into this get-together. There were reassurances the school would keep trying to figure out what was going wrong and what could be done to address making Jonah feel better about his environment. There was also a willingness to hear whatever feedback my wife and I had to offer about what might work best with Jonah. Even so, I confess I was only listening half the time. The rest of the time I was thinking about how much I hated these meetings, all these meeting we’ve had over the years to try to help Jonah fit in, be accepted, flourish. It’s one of the things parents of so-called neurotypical children don’t always understand about being the parent of a child with autism: it seems like you can never make a decision or solve a problem without consulting a dismaying array of experts, often experts who, when it comes to the mysteries of autism, are just guessing. It’s no wonder there are times you don’t feel like a family so much as a lab experiment.
I don’t know about Cynthia but I always end up feeling the same way at these meetings: like I’m the one back in school, experiencing that familiar back to school dread, the troublemaker about to be called on the carpet for whatever it is I’ve done wrong.
What have I done wrong? And what should I have done differently? When you are the child of a parent with autism or any special needs you spend a lot of time asking yourself some variation and combination of these questions. It’s no wonder I find myself missing those relatively worry-free days Jonah spent at camp. This October, they seem so long ago.