Sometimes, in talking to people, their eyes glaze over, and I can almost hear them thinking, “Is she on to that autism thing again?”
I confess, I talk about it a lot. I talk about it to clients, many of whom face autism in their own children. I talk about it to colleagues while we’re waiting for hearings. I talk about it to my sisters when we share each others’ weeks, and it seems my tales of triumph and woe go on and on. I write about it here, and I’m grateful many of you understand and let me know.
For all I lecture about making your life about other achievements besides the raising of an autistic child, the fact remains, a family member with autism is all-encompassing. The autistic life flavors every minute of every day. We must remember to give notice to Captain Oblivious that he has a special program at school so the meltdown at a change in routine doesn’t occur. We push and push to get verbal responses out of Little Miss to every question, force her to stay engaged. We stay on top of Ditto Boy’s meds and watch all three for regression, new behaviors, bad behaviors, falling grades, violent outbursts, interaction… anything. All day. Every day. We go to work and wave them off on the bus, but we wait for the phone to ring.
Someone close to me is a recovering alcoholic, sober now for some time, and her continual vigilance on the issue of alcohol was getting on my nerves. At the holidays, she couldn’t come to the house if anyone was having a drink. She wouldn’t go out for lunch if there was a bar. She comes late for visits or leaves early because she has a meeting, and she’s always thinking about the process of recovery.
About a week ago, it dawned on me: we’re the same.
Both our lives are consumed with the awareness of continual threat; for her, that she’ll lose control of the alcohol again, for me, that something will go wrong with the children, something we should have been able to control. Alcoholics Anonymous has twelve steps to recovery; Autism Anonymous has…well. Hundreds. Most of which probably won’t work for every child, because of the diversity of symptoms and causes.
But the successful approach is the same: one day at a time, with constant attention to learning about your issues, and taking the best possible care of yourself, so you can help those who need your help. And my slightly modified version of the Serenity prayer:
God grant me the serenity to accept the child I have been given, so I can teach him what he needs to survive in our world; courage to work for change in the world so that she can be accepted; and the wisdom to know whether the child needs to be changed, or the world does.