The other day I received a letter informing us that our daughter, Erin, will soon “age out” of state mandated educational services and the district would like to arrange a meeting to discuss the “transition to adulthood.” While this is not news to me, seeing it officially documented makes it very real and harder to shelve – as I have been doing the past few months.
The concept of Erin, who has autism, aging out of anything is inconceivable to me. Erin approaches the world with a childlike curiosity and sense of wonder most people her age lost long ago. She goes to sleep every night watching Barney videos. Despite a deep devotion to her service dog, Pablo, her favorite book at the moment is Pete the Cat.
There is a lack of ongoing services for young adults with autism
Erin has been at her current placement for two years. She loves her school, her teachers and her routine. As we approach a precipice so many parents dread, due to a lack of ongoing services for young adults with special needs, I find myself reaching for some nonexistent pause button.
I don’t want to meet. I don’t want to discuss. Instead I’d like to believe that today is the only day we have to consider. This is not the first time I’ve wanted to put time on hold and ignore a flurry of red flags ahead.
When her husband died suddenly, Joan Didion, wrote about a period of ‘magical thinking’ when her mind played tricks, convincing her at times that nothing had changed and life was as it should be. Over the years I’ve engaged in my own more intentional magical thinking that has allowed me to catch my breath, to refocus and to appreciate what is rather than what might have been. Even on the worst of days, I have found, a small shift of perspective and mindset helps to ride the waves and process the enormity of all.
I sensed that something was wrong with my daughter, but ignored it for a time
Well before we received Erin’s diagnosis I had a sense that something was lagging in her development – but it was easy to convince myself otherwise. She looked and acted like the other babies in our playgroup. Sure her fine motor and self soothing skills lagged a bit but at nine months no one is solving quadratic equations or dribbling a soccer ball.
Erin could crawl around and put wayward objects in her mouth with the best of them. She was equally fascinated by picture books and brightly colored stuffed animals and her ability to sit spell bound through our Mommy and Me music classes rivaled any of her peers. So I coasted – until I couldn’t.
Erin was 22 months when we learned she was born with a rare disorder that placed her squarely on the autism spectrum. As a geneticist detailed a host of delays and deficits, I found myself incapable of looking too far ahead and instead resolved to take her home and take it one minute at a time.
Our daughter taught us to focus on the moment
This urge to hyper focus on the present may be a knee jerk reaction to a daunting future, but it’s also a lesson Erin has graced us with at every stage of her development: to slow down and focus on the now.
Erin has always required full and total attention – for safety sake but also because she lives so fully in the moment. A short walk with her involves a celebration of “Mr. Golden Sun,” an acknowledgement and response to the “tweeting” birds and a requisite pause to admire the yellow daffodils. When I am with her the parameters of time and space and the harsher edges of reality slip away and it’s easy to feel that all is well. We travel the same route to town as everyone else, just at a slower pace.
Alongside her younger brother Erin attended a mainstream preschool which she loved. She wore a uniform and with an aide by her side she joined in field trips, sat for circle time and made holiday decorations.
She did not converse or play ‘typically’ with other students but the school provided a much needed ‘typical’ routine and the space for us to engage in some ‘magical thinking’ while we processed, adjusted and tried to understand where we were going and what Erin needed.
As the years went by life provided some other opportunities to coast, to revel and focus solely on the moment at hand. We moved out of the city and Erin played in the backyard with the kids next door. Thanks to an exceptionally dedicated teacher she was able to thrive within a small self contained classroom in one of our town’s elementary schools.
She and her classmates became part of the fabric of the community. Kids of all ages got to know her and celebrate her and she had the chance to celebrate back.
Middle school was challenging
As it tends to across the board, middle school threw us some curve balls. Our town had no classroom or ‘cohort:’ a group of closely aged children of similar cognitive ability. So began years of musical schools, landing every now and then in a setting that worked for a limited time.
As we approach the end of another short but happy run and I’m forced to put an end to my latest round of magical thinking, I realize that if Erin and all these years have taught me nothing else it’s that, good or bad, time is limited. And maybe just knowing that is magic enough.
Originally Published in Grown&Flown, 5/6/21