It’s almost funny that my not-so-clever tag-line is “Autism, sans sugar coating,” because I actually do sift a liberal amount of sugar about. A lot of the events and anecdotes I write about here are moments of cute, silly, Reader’s Digest-quips, between hours of struggle. Fear. Overwhelming helplessness. Jonah’s screaming, followed by our collective silence. It’s been so long since I’ve experienced any life even close to normal. But this blog is not a diary, and I didn’t come here to complain.
I don’t want to be a self-pitying person. I try to focus on what is endearing. But fuck it. I can’t bring you into my world and then only show one side of it. I don’t want this to be a happy little vapid blog that doesn’t say much of anything of any use. I know other families are struggling like this. They’ve got to be.
I know I am not alone in feeling like my son and I are societal pariahs, and I know other people must look forward to winter too, so they can hibernate in finished basements and empty malls. At least I believe these things, if I can’t know them. It makes me feel better to believe them.
Day after day, entry after entry in the dreaded school-to-home log book.. his sweet teacher trying valiantly to euphemize attacks and aggression with happy faces about the 5 minutes of the day when he was actually good.
He missed the school apple-picking field trip this week because he was so bad on the bus. They took the rest of the class and one teacher went back to the school with him. This is why I don’t try many outside “normal kid” activities. Jonah’s not the nice little developmentally disabled boy on the SAFE (Sports Are For Everyone) softball team. He can’t wait – softball is, almost by definition, waiting – and he’s not interested anyway.
He’s not the kid who will happily play at the birthday party at Jeeper’s. He’s the kid in the very rear of the building, running up and down concrete steps leading to the emergency exit door. He’s not even the kid who swims in an organized class, because he wants to get in the water and back out again at will.
He’s not any kid I ever dealt with or handled or loved or feared or was amazed byor cuddled or played with or was depressed by like this.
Some days we are worn down to barely functioning humans, Andy and I, trapped in this world we can’t navigate. There is no barometer, no compass, no captain. We don’t speak of it much because it always feels like there really isn’t anything to say.
Today Jonah attacked the bus driver, the after-school program coordinator, and Andy. I got home before Andy and Jonah, and when they came in Andy was driving Jonah before him into his bedroom where he pinned him down on the bed. I went to an eyeglass store so they could bend Andy’s mangled glasses back into wearable shape; Jonah had twisted the frames in the midst of his kick-hit-scratch-swat fest. We’re tired.
Did I mention we are tired?
Pulling into the driveway after having Andy’s glasses fixed, I saw a fat rainbow:
and some floral-blooming sunset clouds:
And in the midst of my heart-pounding hand-shaking anxiety, I stopped to take pictures. I had to. I bring the camera everywhere.
I have to let all the beauty fill me
at every opportunity.
The Never Normal 