The boy with Aspergers in the movie, Extremely Loud, Incredibly Close, chose to call 9/11 “The worst day.”
In his life, everything had a measurement, a time allotment, a reason. Until “The worst day.” When my son Julian was first diagnosed with autism, it was certainly one of my worst days, but more than that, it was the end of one world, and the beginning of another.
I took on a pose that day in October of 2010, a position in which I had to hold very still while being propelled at light speed through many changes. The blur of activity and panic made it impossible to measure or record time, much less find a reason for it all.
While therapies, new doctors and diets were being added to our life, parts of my spiritual anatomy were also being rearranged. My son was still my son, only different. I didn’t know him as I had before. I would have to relearn him, and become whomever it was I needed to be. He would need a different sort of mother, more selfless, more deeply involved in his life and the world of autism. I would have to grow considerably in patience and resilience. These improvements would require a complete overhaul. It was no longer enough to be a typical mom; I needed to rise to the level of an Autism Mom.
Once we found a new school (the old one wasn’t “equipped” to deal with him) and were readily accepted, I could relax a little, but not much. There were gluten-free meals to prepare and scary internet articles to read. There were snake oil salesmen to avoid. Sad parents to meet.
The school was twenty-two miles from home. I passed through a toll booth every morning, and again every afternoon. I always noticed the toll booth on our way to school, but not during the drive home. The toll attendants were like gatekeepers of a border separating “normal” from “not”. Once on the “not” side, I was separate from anything typical. It was a strange planet with special schools and weighted vests, occupational and behavioral therapists.
Thank god there were schools on this planet. Being part of a school for children with autism was like being on the inside of a secret, peering into the private lives of mysterious strangers. I felt like I’d been let in on a partial scholarship, given unearned privileges. This was eavesdropping on the worst moments, watching children flail and struggle to move in harmony with the rest of the world, while their parents wondered aloud what the future would look like. We held on to each other, lent a hand even when we were barely hanging on.
Every year got easier, and eventually living with autism became almost as normal as not living with it. I got used to the kids, to the unexpected. The school felt a lot like home, despite the distance we traveled to get there. If I drove home after dropping my son off in the mornings, that meant driving almost ninety miles after adding a second round trip when picking him up at the end of the day. Oftentimes, I hung out around the school for hours, at the local mall or Barnes & Noble. I shopped or read for distraction, but no matter where I went, I took the school with me. I was only on this strange planet because Julian was at the special school nearby, and he was at the special school only because of autism. Autism was never far behind, as if pulled along in an invisible Radio Flyer wagon with squeaky wheels.
Even at home autism followed, not only in my son, but in the small blue bag he carried to and from school. The school emblem was on both the bag and his blue uniform shirt. Autism was on every school handout and homework page, work I wondered about. Was it typical work for his age? Or was it only for autistic kids?
His clothes smelled like the school at the end of the day, not a bad smell, just the smell I associated with autism. And while I felt completely grateful for the school and a somewhat stable life since the “one of the worst days” diagnosis, there was still a weight I couldn’t release, a weight I didn’t even know I carried. It was that he didn’t attend school with his sister five minutes from home. That school wasn’t “equipped” to serve him, which meant he wasn’t accepted there. We weren’t accepted there.
My daughter’s school was a private Catholic school. Although they wanted to start a program for children with special needs, the idea wasn’t popular with most parents or those on the school board. Few parochial schools were comfortable with the idea. There were many reservations, fears about what such a program would do to the status and reputation of the school.
The school did eventually start a program, and I helped with fundraising luncheons for the first two years. I never felt comfortable while I was there, in the same school who’d rejected my son when I most needed acceptance. Even with the promise that their doors would one day open for him, I remained skeptical. I had to see it to believe it.
In May Julian completed his last year at the Westview School. I’d dreamed about it the night before, not quite nightmares but definitely anxiety-filled. My hands were numb from the tension in my shoulders, the sudden new weight of wondering how I’d adjust to being without the place that saved us. It had been a safe haven that made us feel normal again, or close to it. The twenty-two mile drive had stopped bothering me, because my heart never left the building anyway. How could I trust this way again?
On August 18th, Julian walked through the doors of my daughter’s Catholic school for the first time. His big sister held his hand as she led him to his 1st grade class. A week and a half later, he’s still smiling. All is well.
Every day I have to pinch myself. I can finally let my guard down. Every promise has been kept, every hope fulfilled.
This morning I drove the familiar twenty-two miles toward Westview for a hair appointment. Four years ago I had rearranged my life to be closer, so the salon was nearby. I made note of how it felt to drive through the toll booth now that the “strange planet” existed only in old yearbooks, outgrown uniform shirts and a faded blue bag. I felt light. A terrible weight was gone, a burden that wasn’t autism or Westview, but the lack of acceptance that had once existed at his new school. All I’d ever wanted was for my son to be embraced by our community, our world. I didn’t want to pull autism around behind me everywhere I went, like a shameful secret, an out of place piece that didn’t belong to the big picture. I wanted to belong in the world we’d left behind in October of 2010. I needed to close that wound.
While my spiritual anatomy was rearranged and overhauled during our four displaced years, I couldn’t tell you then what changes had occurred specifically. But now I see that I learned not only how to live as a family affected by autism, but to accept that new life. I learned to believe my son could be successful in this world, while accepting that there may be limits. And while I became all that my son needed me to be, I also became more of what I needed me to be. I’m no longer ashamed of being different, and have realized that the quickest way out of despair is to reach out to someone else who is suffering.
Even when we’re both barely hanging on, that connection is life-saving.
I stopped by Westview before driving home to write this. There’s new blue carpet. Everyone was busy doing their thing. I showed the receptionist a small clip of Julian in The Wizard of Oz performance this past summer at Fort Bend Theater. She smiled genuinely. A staff member asked how Julian is liking his new school. I told them he’s happy and they wished us well before getting back to what they do best, helping families find their way, then setting them free.
When I walked out of the building I didn’t feel anything pulling behind me. I felt even less connected to the former squeaky weight as I drove away, through the toll booth in the direction of home.