I recently got a notification through one of my social media apps that I have been named an Autism Super Fan. My son is on the spectrum. But the “super fan” designation makes me a little uneasy. I am just not sure that’s how I would describe my relationship with autism.
We got pregnant in the mid-80”s. Susan and I made all the appropriate plans, went to birthing classes, decorated the baby’s room and settled on a name. Keaton Grogg (after Buster Keaton, the silent movie comedian) was born in the summer of 1985.
There was nothing profoundly noticeable about Keaton during infancy. Early on we did feel that some of the traditional developmental marks were a bit off. Keaton was speech delayed, he burst into tears at sudden or loud noises, didn’t like the labels in his shirts touching his skin or the feel of the seams in the toes of his socks. Just his quirks, we figured.
Around the age of two, Keaton became fascinated with a Mickey Mouse cartoon where Mickey conducts an orchestra playing the William Tell Overture as a tornado sweeps through town. Keaton waved his arms in perfect sync with Mickey and the music. Right on the beat.
Soon we were buying VHS cassettes of orchestras and Keaton followed along conducting. And his favorite conductor was Maestro Zubin Metha. He loved Metha and would often say “I’m Zubin.”
By the time he was six years old, Keaton was diagnosed with Pervasive Development Disorder and as “mildly retarded.” They still used the “R” word in clinical documentation in the early 90’s. Today his diagnosis is Asperger’s syndrome.
That was when we entered an ad hoc world of parents with kids on the spectrum. A world of word-of-mouth advice with one parent giving a tip about how they cut the labels out of shirts or turned socks inside out to deal with the irritation or another who always carried cotton balls to use as earplugs in noisy environments.
I became very defensive—wanted to protect my child from anything negative—feared bullying from other kids. Had no idea what the future would hold. I just wanted him to be normal—but that notion was fading with every new day.
We moved to Winston Salem in 1993 and found Jefferson Day School, a small school dedicated to children who learned differently. At the time, Jefferson Day was very scarce alternative for families who could not get the knowledge, support and understanding they needed for their kids.
We took Keaton to meet Vea Snyder, the school principal. Vea leaned in to Keaton asking “And what is your name?” “Zubin,” he said emphatically. I immediately jumped in to explain that his real name was Keaton. Vea just continued to look straight at Keaton, “That’s okay. You can be Zubin.”
From that day forward it has been Zubin. Vea Snyder accepted Zubin for who he was, who he said he was, and nothing less.
What’s in a name, right? Well, that change of name made all the difference. Zubin would be of his own identity and would make his own mark. Over the years, Zubin graduated from high school and college. He became a videographer and has friends scattered all over the globe. And he still has his music.
Now we have returned to Winston Salem and have decided that this will be our and Zubin’s home from now on. The landscape here for individuals on the spectrum has changed mightily since the early 90’s. The resources for the individuals with autism have expanded manifold.
My experience with autism doesn’t make me a “fan” of the reality of the struggles of neuro-diverse individuals. Many families are crushed by the weight of autism.
If I am an Autism Super Fan of any kind, it’s of the folks like Vea Snyder and all the dads, moms, teachers, psychologists, therapists, brothers, sisters and friends who accept, support and love those on the spectrum. Who love and accept kids like Zubin for who they are.