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“When I Knew My Son Was Different” – You’re Not Alone

11-2-16-when-i-knew-my-son-was-differentvia: and Maria Mora

This week, our post in this series comes from an outside source. Maria Mora wrote this article about her son, Simon, and it was too fantastic to not share. So without further ado, in Mora’s own words:

“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.

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.

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.”

Click here to read the rest of the article. 


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