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.
6 thoughts on “My Year of Extreme Caregiving”
Glad the blog is in your “fun” folder and hope that the difference in the comments here keep it that way (as well as the no expectations rule — that is, you write when and how and about what you want to).
I miss your commissioned pieces in the magazines/more formal venues when you step back because they really are better than others, but, potentially that is side effect of doing more work than you are being paid for.
I’ve just joined the board of small and growing not-for-profit, and the burnout of people doing more work than they are paid for and then having to step away is huge.
Wishing you a circle of support as you circle your wagons to take care of yourself and family.
Yes. The commissioned pieces ended up as minimum wage or less per hour.
I’m grateful for your blog too and hope to read whatever you write wherever you write it. I always learn a lot and have that weird parasocial sense of being in your cheerleader squad – which I really do, so cheering you on as you make decisions that are right for your family and hopefully which do give you time to do things that bring you joy too.
Thanks! I need cheerleaders right now. I’m taking a little time off. I’ll be back when things stabilize.
I’m so happy that your blog is a fun outlet for you, rather than draining.
I, too, value the interesting perspectives that you bring to your posts, and the fascinating, well-researched, intelligent and respectful discussions that are fostered here.
Hoping that things will start to smooth out soon – though I know that dealing with bureaucracies is awful.
And the cheer-squad from NZ is right behind you!
Thanks for what you do share, because families like mine, are one or two steps behind you and at times I feel so lost and unable to know what to do next for my daughter. Your blog gives me an idea what we need to do next. Obviously it’s a lot of work, and I often wonder how a family that needs both parents to be working full also navigate all that… because that’s what’s up ahead next year.
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