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 
A few years ago we were on holiday in Cornwall with my sister and brother-in-law who was terminally ill. The weather was awful for July. Driving rain greeted us each morning. A cold wind reached gale like proportions and thick fog enveloped us without warning. (We were near Bodmin Moor).
Throughout the fortnight, various children and their partners, joined us for a couple of days at a time. We were dressed in waterproofs and thick sweaters most of the time.
The sun peeped through the clouds occasionally and we made the most of those times, bringing out cameras and even managing a picnic (on a blanket on the grass) on one memorable occasion.
We did take some pictures in the rain. There is one of a few of us exploring Launceston Castle with rain and win threatening to blow us off the parapets. Our faces were pictures of laughter and hysteria as we scrambled down the crumbling stairway.
On the whole though, the photographs from that time are filled with sunshine, our faces full of smiles. From those, you’d never guess that the holiday was the last we were to have with my brother-in-law – he died in the November of that year.
We all ‘put on a face’ and smile for the camera, no matter what is going on behind the scenes. Your blog is a bit like this. Don’t think we can’t read between the lines though. We know we are getting the ‘up’ moments. Don’t be afraid to show a little of that struggle you go through every day either. Some days it may help to write about it and throw it out here.
Continue to take your photographs of the beautiful moments you witness. They are important and will help you keep everything in perspective. I love the ones you have posted today!
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Deborah, thank you. Your words are always positive and encouraging to me. Can I fly over and visit? 😉
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Of course you can Amy. Wouldn’t that be great? 🙂
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http://autismrealitynb.wordpress.com/2007/01/22/for-severely-autistic-children-nothing-is-going-to-change-if-people-don%E2%80%99t-know-what%E2%80%99s-going-on/
i love you deary. 🙂
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