When I Knew My Son Was Different

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Simon. Photo provided by Maria Mora. 

When I was pregnant with my first son, I went on a walk each evening. The routine helped settle my nerves about becoming a parent. I rounded three cul-de-sacs in the same pattern each time, cradling my belly protectively.

As I walked, I thought about names and the power that words have.

Anthony felt like a strong name, but Tony was a little too casual. Tony might be a bad boy. Jude was lovely, but maybe too soft. Would Jude be able to stand up to school bullies? I plotted out the futures of dozens of imaginary children. Oliver. Augustus. Nicholas. Aiden.

Then my son arrived.

It took two days and two nights to name him after a traumatic induction that lasted nearly 24 hours. His dad worried that he might be teased for the name I wanted, but I said that none of his peers were going to remember a Saturday morning cartoon from the 1980s. I’d made my decision already, but I struggled to put it on the paperwork, to make it real. The responsibility of choosing a name weighed on me as much as the fear of going home without a team of medical professionals telling me how to keep my baby alive and healthy.

Finally, a nurse told me the hospital strongly discouraged leaving without a name picked out.

We named him Simon.

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I called him Squiggleworm, Si-guy, Dumb Baby, and Biddles. I crooned to him and made the shush sounds they recommended on baby blogs. He was a tiny, hungry, fragile thing. His name — a man’s name — didn’t fit. Not yet.

He is now eight but by toddlerhood, we knew he was different. He began speaking at 10 months old. He obsessed over letters by his first birthday. At 18 months, I took him to the doctor because he had an obsessive habit of convulsively squeezing toys, touching them a set number of times and arranging them in intricate patterns.

They brought us in for an EEG, glued dozens of wires to his little head, and made sure the strange movements weren’t seizures. Within a few weeks, a doctor drew a triangle for me. Years later, I remember exactly how the pencil looked gliding across the paper as if she were casually doodling. “We often see these present together,” she said, writing down tic disorder, obsessive-compulsive disorder and ADHD. It was too early, she went on, to be sure about anything but the fact that he wasn’t having partial seizures.

By the time he turned three, he had more names. Autism spectrum disorder. Stereotypic movement disorder. Sensory processing disorder. Life-threatening peanut allergy.

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At four, we added asthma to his resume after bouts with RSV and H1N1 weakened his lungs.

At six, his school tested him and added Gifted to the list.

At eight, he had a sudden tonic-clonic seizure in the middle of the night and gained another name. Epilepsy.

His name is Simon.

He hears a lot of medical terms at doctors’ offices.  He sees an allergist for immunotherapy. He went to a behavioral therapy group for two years. He sees a cognitive behavior therapist. He was in occupational therapy for years. He sees a neurologist and a neuropsychologist.

Simon is a third grader. He’s an alphabet soup kid. His “issues” are a steaming bowl of acronyms.

I rarely explain any of this to other parents. I might as well be introducing him as John Jacob Jingleheimer Schmidt. Although, deep down, I’m desperately hoping another mom will exclaim, “That’s my son’s name too!”

My son has so many names — labels we need to satisfy the whims of insurance companies and convince the public school system that services are necessary. They’re too much to lay out in a casual conversation. It makes people uncomfortable. I quickly backtrack with, “But he’s fine.”

But if he’s screaming at me disrespectfully, please understand that it’s not because I’m some hippy mom forgoing all discipline. If we skip your child’s birthday party, please know it’s because he had a meltdown and hit me and I’m so tired and I can’t handle another second of trying to keep things running smoothly. If you hear me yelling, please know I’m trying to do better. Every day I wake up and resolve to do better.

On good days, the names he’s accumulated over the years feel like insults hurled across a playground. No, my son isn’t that. He’s smart and funny and dynamic and curious and loving.

On a recent car ride home from therapy — our version of after school activities — I asked him if he understood all the words that his doctor says.

"No." He shrugged, sounding defeated, as if he’d long ago started tuning out what grownups say over his head.

"Do you know what autism is?"

"No."

We were at a red light. I closed my eyes briefly. “Remember how your brain works a little differently than other people’s brains? That’s called autism.”

"OK."

That was it? Surely there had to be more. I wasn’t doing this right. Names are so important.

"It’s not contagious or dangerous."

"I know, Mama," he said, tone thick with exasperation. "It just means I can do cool things, like build cool LEGOs and squeeze my animals."

The light turned green and I laughed.

"What? What’s so funny?" he asked me.

"Nothing, babydoll," I said. "You’re perfect."

"Don’t call me babydoll." He made a face at me in the rear-view mirror. "My name is Simon.”

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