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Joanne De Simone Headshot

Moving Forward

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It was an ordinary day in the park. That was the plan. John and I walked around the black paved path pushing Benjamin, our non-verbal, seizure-ridden 14-year-old son, in his wheelchair. With cautious optimism, we eyeballed our 10-year-old son Sebastian as he rode his bike on the path.

Milestones are hard-won in our family. Sebastian has a pace all his own, like most kids on the autistic spectrum. His gains, no matter how lagging, are at the heart of my positive daily mantras. So what if he's behind in reading? He's reading. Who cares that he still has trouble adding one plus one in his head? He knows the important numbers: his address, his father's phone number and 911.

In our never-ending quest to experience something normal, we encouraged bike riding. Sebastian quickly became an accomplished driveway cyclist. He was ready to move on to greater challenges. I was mindful about giving him too much freedom. The stories of wandering autistic children are plentiful.

We knew this park. The majority of the path is visible throughout, but there are a couple of spots where contact is lost. Lap after lap, we praised Sebastian for staying on course. I allowed myself to fantasize out loud about the future, "Maybe next year Sebastian can ride alone in the cul-de-sac or even go to our local park by himself."

I knew this kind of thinking broke one of the major rules of special education parenting. Live one day at a time. Don't think too far ahead. I couldn't stop myself from toying with the hope that Sebastian would overcome his obstacle-ridden childhood and cross the finish line to independence. Or semi-independence.

Another young boy sped toward us on his bike. I made comparisons, knowing I was breaking another rule. Don't compare your child to anyone else. I couldn't help it. The sight of him seemed to reaffirm the success of our experiment. We were having a normal day in the park.

Then, the young boy took a spill. He was fine. I wondered if the sight of Benjamin's twisted hands or protruding tongue was distracting, causing the fall. I dismissed my paranoia. I was reminding myself to enjoy the moment, when I realized my preoccupation with the young boy caused me to lose sight of Sebastian.

Just as panic was setting in, he reappeared announcing, "I have something to show you." He led us to a fork in the road. Sitting on a bench was a young couple and an elderly woman. The young man had an unusual Frisbee. I thought that was the object of my son's fancy.

As we got closer I heard the elderly woman, "There's something wrong with HER. She's... not... right." I looked at Sebastian, the HER to whom the woman was referring. Sickeningly, I started, "This is our son. What happened?" The young man reluctantly replied, "Your son said some rude things. And then he flipped us off." I was lost as to why Sebastian would feel the need to say anything miserable to such meek folks. I insisted apologies be made, and walked away broken.

Sebastian's communication skills are far from age-appropriate, but I pushed him for an explanation. Bit by bit, he sketched a picture. "I waved to them. They didn't ALL wave back. I don't like them." I tried to relate, thought about my own less-than-stellar childhood antics. Still, I was completely unable to understand Sebastian's leap from a full hand wave to a solo finger salute.

John's disappointment stung, "That was a real eye-opener. You're in big trouble young man. Don't talk to me for the rest of the week." The silent treatment was the parenting model John had been raised with. This was not the direction a bike ride should have taken us.

Bike riding had been John and Sebastian's one and only bonding sport. John had just about lost hope of having such a sacred father/son experience, but it finally happened. Now it was all in jeopardy. I pushed Benjamin along the black paved path with a gnawing pervasive sense of doom, no longer dreaming about the freedoms a bike ride could bring.

Sebastian was sobbing, "Why did I do that Mommy? I ruined the day. Daddy, talk to me." I gestured for Sebastian's hand, hoping my touch would be enough to reassure him of our love.

I didn't want to deal with setting consequences, but we had to teach Sebastian a lesson. What if he cursed at a bunch of teenagers and got beaten up? I thought about how my mother would have responded. That was no help. In the seventies, a swift public ass kicking WAS the standard consequence.

Scolding Sebastian wouldn't be enough. We'd have to take something away, but Sebastian can't deal with change. He has rules that must be followed. We just have no idea what all the rules are. If we break one, he'll pace around talking to himself, tapping the bottom of his chin with a fist. For hours.

I wanted to get out of the park. I wanted to get out of my life.

On the car ride home I continued to analyze. At 10 years old, I was flinging a fair amount of foul language. Why was I so devastated? The tone of the old woman and the way she shook her head pierced me. She was mistaken about his gender, but her vision was clear.

Sebastian's not normal. He never will be. He'll never be able to navigate on his own. There's no way to protect him, no way to teach him everything, every social nuance. I hit myself with numerous long-suppressed negative thoughts. Why did I have children? When will all the stress and uncertainty end?

Never. It will never end. Or I should say, it won't end well. What is the worth of living this life and feeling this grief? Having children that lack a foreseeable future leaves me to ponder gruesome resolutions.

We're desperate to continue this ride despite being stranded in the middle of disability enlightenment. Long past overt institutionalization, long from complete acceptance, I stretch myself across the divide with nothing more than raw determination and the ability on most days to wear an unreasonably optimistic shade of frames.

I've gained my strength and focus from Benjamin. Every time he smiles through a seizure, he reminds me to choose happiness in the middle of the dark course. I don't have to like Sebastian's pace or choice of path. It doesn't matter if I can't see his passage to freedom. He's moving forward. We all are.