Lessons From the Year We Didn't Have Support for My Autistic Son
While living away from the support services and networks she had built for her autistic son, this mom learned some important lessons about her family and herself.
An hour after my oldest son got an autism diagnosis at age 3, I was on the phone setting up therapies for him. Finding him services and connecting him with kind, friendly people who would help him grow and develop at his own pace became the driving force of my life and the motivation to my days. Some therapies worked—like RPM and gymnastics—while others weren't good fits, but, all told, during the four years following his diagnosis he was busy, happy, and knew what to expect from each day.
Then we moved from Wisconsin to Oregon, and everything changed. Our routines were disrupted, our living space was small, it rained a lot, and we were 2000 miles from the friends, family, and support we'd come to rely on. At first my son rolled with it well—he enjoyed parks, exploring new places, and visiting the gorgeous Pacific Coast. But, as the days passed and the autumn rains forced us inside more and more, his anxiety, frustration, and boredom grew, manifesting in meltdowns and aggression.
It was painful to watch and harder to live through, and I spent months trying to replicate the support networks we'd had in Wisconsin. But it was to no avail. I was told again and again that wait lists were long, nothing would open up for months, and that even the state's disability program—which provided bare bones services at best— would take six months to get enrolled in. There is a terrific private autism school in Oregon, where I had desperately hoped to send my son, but due to fluctuations in my teaching work, we simply couldn't afford it.
It was beyond frustrating to know my son was bored and needing support but not be able to provide it no matter how many people I called, how much energy I threw at the problem, and how much I cried, stewed, or hoped.
But I did learn a few things in the "Year We Didn't" and I want to share them with you:
- Sometimes things don't work out, even if I do my best to make them happen. But I learned to forgive myself and keep trying.
- We are only as strong as the connections we make to the people around us. And even if you don't have a village, a few friendships— online or in person—can make all the difference.
- Trying to support, educate, and enrich my autistic son without any outside help made me better understand what so many people all over the world face when trying to support their own children. I was especially moved by the work of A Global Voice for Autism and the stories of refugees with autistic kids.
- I learned that my husband and I are not enough for our kids, and that they need a network of people in their lives.
- I learned that there will be joy and suffering every day, but like a sunburst on a rainy day, when there's joy, run with it.
- And, perhaps most importantly, I learned that finding laughter, eating ice cream together, watching the sunset, and just leaning into small moments with our children goes a long way towards happiness.
So, with all this in mind, as soon as my husband's 1-year job commitment ended in Oregon, we moved back to the Midwest. Now, all of us are thriving around family and friends, and my son starts RPM therapies again in a few weeks.
But we are different than we were, as a family and as individuals. We are heavier—both literally because we all gained weight during the long, rainy season—and metaphorically because we lived through months of worry, frustration, and isolation.
But I also think we're a bit stronger. Because now we know some things that we didn't before, and we appreciate simple things—like family or easy access to services—in ways that we didn't before. I don't know what the future holds, but I do know that we will never take these things for granted again.
Jamie Pacton writes middle grade and young adult fiction, drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons. Find her at www.jamiepacton.com, Facebook, and Twitter @jamiepacton.