Notes From the Underground
Notes From the Underground
Well, not anymore.
Every few years, I take a stab at writing a book about autism.
Caring for a loved one with autism has been my life for twenty years. There isn’t one day that hasn’t been touched — for good or for bad — by autism. On some days, I struggled to communicate with someone, who seemed to speak a different language than I did. On others, I was amazed by the beauty and originality of his mind. In the past few years, my usual advocacy efforts to get him the right help from a public school district was amplified. All that experience should add up to a book, I thought, and even went so far as to write a few book proposals — an arduous endeavor; don’t do it.
My last stab at a book was during one of my bleak periods, where my family’s differences made me feel very isolated from mainstream community. A tentative title — Notes From the Underground — was a nod to Dostoevsky’s novella by the same name, which featured a super miserable fellow who hated himself even more than he hated the larger world. Uplifting, right? A downer book about autism? Sure to be a best seller! I shelved that proposal after writing the first few paragraphs.
But I wouldn’t write that draft today. Today, Ian is in a great school, where he’s growing and thriving; I’m not jerry-rigging my own program for him and driving long distances to various therapies and tutors. When he gets off the bus in the afternoon, he proudly shares something that he did at school that day — He cooked strawberry cookies! He started a new job at Walgreens! His verbal tics, which flare up when he’s stressed, disappeared over night. For the first time in ages, autism isn’t the dominant force in my life. Worry isn’t the dominate force in my life. It’s liberating and disorienting at the same time.
For the first time in ages, I can concentrate on my career and to breathe the fall air when I’m out for my run. My brain space isn’t clogged up with concerns and chore lists. Free from stress, I can appreciate all the big wins.
After blowing out the candles on Steve’s birthday cake on Monday, Ian proudly handed Steve four boxes that he had wrapped up himself. Inside were computer parts - memory and RAM and things that I don’t understand. He purchased those items on Amazon all on his own using his cat-sitting money from our neighbors. After watching hours of YouTube videos on computer repair, he learned what parts to purchase and is planning on upgrading Steve’s PC this weekend.
I am also appreciating the little moments. Yesterday, I spent the entire day working on a freelance article and organizing books. When Ian got off the school bus at 3:30, I dropped everything to listen to his stories and eat his school-made strawberry cookies. It’s really nice to be above ground again.
Although I’m not personally struggling with the downstream effects of having a quirky family, autism hasn’t left me entirely. I’m writing this newsletter after all, and working on an article for Edutopia about autism-friendly schools. But I’m writing about autism with enough professional distance to not feel its weight at all. Maybe at some point, I will take another stab at a book, but today I’m just enjoying the moment.
LINKS
On weekends, we go places. Pictures from a trip to New York City and a bike trip. One day of food.
Schools are going to be a big issue in the mid-term election. Families that felt the most pain during the pandemic are still mad.
The local running club aimed at old people like me has unexpectedly become a haven for young people in their 20s who have no other social outlets and are very lightly on the autistic spectrum. This oddball group of seniors (some are 70-year old marathoners) are beyond kind.
In my primary newsletter, how local communities view migrants and families with disabled children.
It's *so* great to hear about these successes!
Thanks, John!