Archive for July, 2022

avoiding autism

One of my friends is really into the Netflix Show Love on the Spectrum and asked me if I’ve seen it. Well, actually, she kind of assumed I watched it. If I had a dime for every time someone told me about a book or movie or article or documentary about autism, I’d have enough to fill a wheelbarrow.

I’m usually just not interested. For 20 years now I’ve lived and breathed the reality of severe autism – and for a few of those years, I did it in crisis mode, documented here in the beginning of my blog. While there are exceptions (I recently read and loved The Maid by Nita Prose, for instance, whose main character is a woman who seems to be on the spectrum), I’ve kind of had my fill of autism and will often even avoid autism stories.

I’m particularly uninterested in “I cured my kid of autism” stories. If there were a “cure” for the severe kind of aggressions and/or self-injury seen in individuals like Jonah, we’d all be on board, believe me. Not to mention that for many people with autism, the notion of needing to be cured is insulting, and rightly so. What needs curing are those elements of autism causing distress, pain, and harm…the things that prevent the person and those around them from quality of life. That’s how I see it anyway.

At any rate I’m over here not watching Love on the Spectrum, though I know it’s supposed to be good. Maybe I’ll check it out sometime. I’d be lying if I told you the stories of higher-functioning people didn’t sometimes make me envious or sad. I’d love to have a conversation with Boo. I’d love to see him making friends, going places, achieving dreams, falling in love…participating in the world. And at the same time, I’m grateful he is innocent and unaffected by all the things that bring the rest of us down….fear of war, on high alert for school shootings, the divisive climate of our country, disastrous climate change, the recession, all of it.

As I get older, I feel gratitude more freely and frequently. Every meal, every friend, every heartbeat. I have enough and I know it. My son is happy with his music and his swimming pool and lives under the watchful eye and heart of Briana and others who love him. He has a mother and father who love him dearly.

I’ve been feeling better, embracing and strengthening my relationships with friends and family, going places and doing things. So far this season I’ve kayaked at a local lake, hiked in the woods, spent 3 days at the beach, shopped farmer’s markets, joined a dining-out group and met new neighbors, planted flowers, took a watercolor class, attended a wonderful weekend music festival (where Guster headlined one night), saw Janice Ian at Caffe Lena, and of course visited Boo a bunch of times.

I’ve settled into somewhat of a summer routine with Boo, whereby I stop at a local restaurant to pick up food for Jonah and his caregivers (usually Briana and Siara), and we all eat at the picnic table by his house, then take a campus walk. Always Jonah wants my phone to play music; at his request, the music he wants on our walk is Guster. Always the campus is beautiful. Almost always, he reaches for my hand and we sometimes dance or laugh.

Here’s the photo from the clever Mother’s Day card Boo/Briana mailed me. Gotta love that smile!

Although I don’t write here as much as I used to, I plan to keep posting updates and news of Boo. He’s still an interesting source of stories, and as we near his graduation and move into an adult program, there will be a lot to share.

I have faith it will be positive news.

Wishing you all a bright, beautiful summer full of love!

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