The Boy in the Moon

My oldest son has Autism. When he was diagnosed, he received preschool based therapy at a facility which changed our lives. At the school, there were dozens of children with Autism, global delays, and there were a few children who I would describe as profoundly disabled.

They self injured, they vocalized in chirps and growls, they had near constant immune system issues, they seemed to my untrained eye completely disconnected from the world I lived in. To a parent new to the journey of developmental difference, observing them and their caregivers was awe-inspiring.

The thing that I remember most about these children were their parents. They were so tired. We were all tired – sleep issues are so prevalent almost children with developmental difference, but these parents demonstrated a lack of sleep that visibly showed, that seemed to never resolve.

Despite these struggles, the parents never gave up. Their children made progress at a developmental pace I'd describe as glacial. They sat in on endless appointments, geneticists, orthopedists, OT, PT, all for a bit of progress so minute the parent of a neurotypical child would letter bomb Dr. Sears.

One child who my son schooled with had their speech services cut because they did not make demonstrable progress. Of all the indignities I've heard amongst my collected friends, “I'm sorry, our tax dollars are better spent on a child whose data will look better” trumps all.

So The Boy in the Moon struck home quite sharply not because I've lived this life, but I've witnessed this life. I've sat in waiting rooms with this life. I've had the life the author in dark moments would trade for without hesitation.

It's well written and pulls no punches. It also has a significant section about L'Arche, which is an incredible program for the care of adults with difficulties living on their own.