Leaving room for Orion
In January, I learned that my son Orion is autistic.
I was sitting next to my husband at a meeting with a school psychologist, a speech language pathologist, an occupational therapist, and a special needs administrator. These four women, who had collectively spent only a dozen hours with Orion, took most of the morning to talk through the 30-page Individual Education Plan outlining their goals for my golden-haired little boy who celebrated his third birthday 13 days earlier.
They were careful with their words, but I had already seen a draft and knew what the final page said: The Boulder Valley School District believes my son displays enough defining characteristics to receive special education services for the educational disability of autism.
The night before, I could hardly sleep. I confessed to my husband that I was worried I would get angry during this meeting. I’d barely been able to conceal my fury during the first assessment a few weeks earlier, when the evaluator kept trying to get Orion to stop playing with the slide in the evaluation room.
Of course he’s going to want to play on the fucking slide, I thought.
“Is this part of the test? Are other kids able to ignore the slide?”
“Most can, yes,” the evaluator told me.
I stopped coming to the evaluation sessions.
But the meeting went far better than I expected. The evaluation team successfully convinced me that, although they only had a small glimpse into my son’s life over the past three months, they had paid attention to more than their evaluation tool. I could tell that they had made efforts to get to know him when they shared observations about him that didn’t fit into an IEP form.
They told us that if we followed the early intervention plan, it was possible Orion might not even need an IEP by early elementary school.
The next few weeks I focused on logistics. We had to rearrange everything in our lives to accommodate the most inconvenient special needs classroom slot we could have received: 12 to 3 p.m, Tuesday through Friday.
In early March we had it figured out, I thought. Orion loved riding the school bus home from his new preschool, and he was starting to show early signs of progress with his educational goals.
Then COVID-19 closed the schools.
We spent the first few weeks of the shelter-in-place order just trying to get through the day, hour by hour, figuring out how to continue our full-time work schedules with a preschooler at home. Determined not to fail at this, I rearranged my work schedule to attend his teacher’s virtual circle time with him.
While the other kids sat up and participated, singing along with the teacher, Orion curled up in a blanket burrito and watched with his head poking out of the top. I congratulated myself on what I saw as a win. At least he watched the lesson from start to finish.
As the weeks went by and school continued to be closed, I wanted a plan. I needed to know how on earth we were going to fix Orion’s autism if the schools didn’t open back up soon.
Orion’s special education teacher reminded me that they were putting out lesson plans and planning more conference calls for the kids. I told her what I really needed was to understand autism better. She set up a meeting with the school psychologist. I didn’t really see the connection, but I was too busy to argue. I accepted the meeting invite when it arrived in my inbox.
Truthfully, I was embarrassed that the psychologist had been brought in, and nervous, too.
I spent the first fifteen minutes nattering on about everything we’d been trying at home. Then I said, “I just don’t understand enough about autism to know if what I’m seeing in him is normal or not.” The psychologist’s answer surprised me.
She said, “Sharon, no one can say for sure if what you’re seeing in Orion is him being an early three-year-old, if it’s autism, or even just his unique personality - the things that make him, him.”
It was as if someone had unlocked a door, and as I turned the handle and stepped through the doorway, I emerged into an open field full of possibility.
I realized in that moment that since Orion’s diagnosis, I had only left room for two options: what was normal development, and what was autism.
I had forgotten to leave room for Orion himself.
My paralysis turned into a thirst for more information.
Instead of spending hours each night scrolling through stories about the coronavirus, I started looking for anything I could find about how to understand and support my autistic preschooler. My search quickly produced a number of stories and videos created by autistic adults, sharing how attempts to “fix” their autism throughout their lives had harmed them and left them longing for spaces where their uniqueness could be appreciated and assimilated.
As I read, and as I watched, I began to uncover some uncomfortable truths about my approach.
First, I had expected that by agreeing to this early diagnosis and intervention, at some point in the future no one would even know Orion was autistic. He’d be fixed and everything would be okay.
Second, in my ignorance and in my fear, I had surrendered any role in understanding Orion’s autism to his special education teachers, his intervention specialists, and to the team who had designed his IEP. I had been acting as if my only job here was to ensure he showed up for the aforementioned fixing.
When those options disappeared, all at once but also slowly as we realized there would be no summer camp, and next year’s preschool session is far from guaranteed, I felt abandoned. I kept asking myself, Who would fix him if the schools stayed closed for months, or longer?
Now, I’m starting to ask different questions. Questions like, What will I need to change inside myself to be a stronger, more confident advocate for him? To be the kind of parent who leaves room for Orion to be Orion.
In this way, I’m grateful for the disruption that the global health crisis has brought to Orion’s individual education plan. Without it, I might have gone on for years waiting for the time when Orion would be fixed.