My Year of Extreme Caregiving

Raising two boys, with one on the autistic spectrum, has never mixed well with full-time employment. I had to walk away from academia – after ten years in grad school and tens of thousands of student loan debt. I never figured out how to deal with the constant school emergencies and day-time IEPs, while managing a job that expected the full presence of body and mind during day-time hours, as well as travel to conferences and weekend paper grading. I was not a happy camper about giving up that dream, but I slowly pieced together my dignity with some high prestige/low paid writing gigs. During the pandemic, I paused a lot of that writing work. Even though schools opened in September 2021, my usual caretaking responsibilities became even more extreme.

Last June, Ian left high school and entered a nether-world of too autistic for college, but too smart for government benefits and standard disability programs. I will spend at least 40 hours this week doing Ian-related tasks — filling out paperwork, attending meetings, touring programs, writing emails, researching options, networking with parents, and writing reports. If you define “worrying” as a task (I do), then Ian-related chores took up every waking hour this week. Steve and I are so stressed out that he was in a car accident with Ian on Monday. (Everyone is fine.)

This is my new normal. We’re making it work by trying to make sure that we still have fun. We spend time with people who get it; friends who don’t understand our situation have been dumped. The scraps of time that remain are used for work that matters to me, like writing on my own terms and my little book shop. I do not have the brain space to write commissioned articles. I stepped away from volunteer and advocacy activities that are not directly related to our current situation. Other changes will happen soon.

We are “circling the wagons” right now and protecting our family. I will keep the blog going with its usual mix of politics and personal, because I mentally file this blog into my “fun” folder, not a “work” folder. I’m not sure if I’ll talk about these issues here or in another site/place/website, but I just want you all to know what’s going on behind the curtain.

PICTURE: Ian, age 4, and Jonah, age 6, on their first day of school. One of those years that I tried to juggle work with the academic career.