“What would happen to Matthew if you guys were killed in a plane crash?” asked a nervy acquaintance. The question stunned me. Since my son, Matthew was first diagnosed with autism as a toddler, I’d been asked tough questions about his future. “Will he ever live on his own and hold down a job? Do you think he’ll get married?”
The questions hurt me and haunted me. I was doing my very best just to keep my head above water – getting through each day was a victory in itself.
But over time, the nervy questions helped me. They forced me to look ahead and prepare for the future. What kind of a job would my son enjoy as an adult? Where would he like to live? How could I insure that he will be safe, as independent as possible but looked after by people who cared about him? And how could I make sure that he maintained a relationship with his two younger brothers without being a burden to them?
I’ve said it before and I’ll say it again-residential schools are not for every child with autism, but the one we found for Matthew when he was 16 saved him during a time when his impulsive behavior, fueled by raging hormones, took a dangerous turn. Our days were punctuated by police visits after Matthew approached young girls and asked them if he could touch their hair, by calls from his school, (Matthew wandered away at lunch-have you seen him?) and complaints from neighbors. (Why is Matthew cutting down a tree in our back yard?)
What we thought would be a short-term safe haven in a time of crises ending up being a path to Matthew’s future. He went on to a transition program with the same organization. Now 22, Matthew has recently moved to a community in nearby Santa Cruz to pursue his dream of becoming a professional gardener. He’s living in an apartment with a helper and has doctors, psychologists and social workers who have helped us set goals for him and monitor his progress.
In practical terms, Matthew and his two younger brothers will be taken care of if my husband and I die unexpectedly. Andy and John, Matthew’s “typically developing” brothers will likely go on to make emotional connections that will sustain them when we’re gone. I hope Matthew will, too.
It’s a topic that makes all parents shudder. What will happen to my kids if I leave the earth prematurely? For the parents of the disabled, the question is almost too painful to consider yet painfully important.
What we can do is surround our sons and daughters with family, friends and nurturing caretakers while we’re still here. And we can show them the gratitude they deserve – and trust that their circle of support will continue.
Laura
Laura Shumaker (www.laurashumaker.com) is the mother of three sons. Her oldest, Matthew, is autistic.
Laura writes each Friday for www.specialneeds.5minutesformom.com