Reasons Why I Retired and What's Happening Now

Reason 74: Parenting on the Spectrum

As I mentioned in an earlier post, my youngest son Allen is autistic and has a myriad of challenges on a daily basis. When I was leaving the house at 6:15am weekdays to catch the train into the city and arriving home around 4:30pm, I had scant knowledge of how he really spent his days. Weekends were careful schedules of chores and errands, but weekdays were, well, not.

Welcome to Allen’s World, a carefully constructed Jenga tower of items that can easily come crashing down into a pile of frustrations and potential meltdowns.

Photo by Oscar Ivan Esquivel Arteaga on Unsplash

After a few weeks of this, I was tempted to go back to work.

But as Allen’s mother, I had made a resolve to help my son live the most independent life he can. That started with a quickly aborted attempt to put my square-peg son into a round hole, a hole I designed and somehow expected him to fill. My next ill-fated tact was asking my older children to be “more involved” in their younger brother’s life. While they both agreed they wanted to, none of us really knew what that would look like.

“Allen needs to go back to therapy!” was my next brainwave of a solution. My son had made the decision to stop his weekly therapy sessions—which he had attended faithfully for six years—in November. He gave valid reasons for discontinuing. Already frazzled with my father’s decline and placement in a long-term care facility 300 miles away, I agreed. Had I been wrong?

After a couple of major meltdowns—think Vesuvius—I felt literally at my wit’s end. I loved Allen, but I wasn’t sure how either one of us would survive at the rate we were going. Wasn’t retirement after 30 years of teaching and more than two decades of caring for an ill husband supposed to be MY time? Was I doomed to spend it walking on egg shells in my own home? And wasn’t I entitled to some grieving time after my father died in June?

I’ll admit I spent a few days feeling pretty sorry for myself. It wasn’t fair! But life never is. After my mini-pity party, I got back to what I do best, researching and writing. And while there is no quick and easy solution to planning a future for a loved one with a developmental disability, I found resources. I needed to reframe my expectations of Allen and learn to look at his positive traits.

Last week, I joined a group called “Empowering Ability”, a way of taking small steps towards carving out a future for my son, a future that will involve his siblings but also grow the skills that Allen already has. It will probably include therapy eventually and a new psychological evaluation, but at the moment I spend each day looking for “wins” for my son and cheering him on. And I found that I am not alone; there are many parents just like me who want to provide a future for their loved ones.

I’d like to bring you along on this journey by adding a new every-so-often section of Quirky called “Inside Autism.” And because my son’s privacy should be part of this journey, in any blogs about our work in “Empowering Abilities”, I will refer to Allen as AHTC, the nickname his siblings called him when they invented the Bouncing Baby Show.

Here we go! Will you join me in this journey?

Hi, Readers, I’d like to ask a quick favor. If you’ve enjoyed this post, maybe even learned something from it, would you consider sharing it on your own social media or email or even restacking it here on Substack? I’d appreciate it as I try to spread the realities of adult autism!