Parenting on the Autsim Road 2

Parenting a child on the autistic spectrum is not an easy road, but it’s not as hard as one might think. There are bumps and rough spots, but sometimes the road is smooth and one meets many travel companions along the way. Each person’s road is different.

My son was diagnosed with Autism Spectrum Disorder, but one wouldn’t know it just by looking at my him. What people see is a teen who appears neuro-typical. He enjoys hanging out with friends, learning about history and science, playing computer games, and sleeping in late. On our road, we didn’t have an immediate diagnosis.

As a toddler, my son screamed if we took him outside without sunglasses. He disliked most clothing, insisting on wearing his favorite super soft Superman pajamas every day. There were small indicators, but he was very much like the average toddler.

As he entered the preschool years, he had difficulty pronouncing words that his peers could articulate. He didn’t show the classic signs of autism, but there were still signs—delayed speech and sensory processing issues. The sensory challenges became prominent at the dinner table due to what my husband and I called his “supersonic” hearing—we couldn’t hear what he heard. Producing loud, blood curdling screams, our son yelled that the sound of chewing food hurt his ears. He was the only preschooler I knew who was “kicked out” of Sunday school. When other children sat coloring, he would be the child running around or hiding under tables. Kicking, hitting, and biting were his way of navigating social situations.

It felt like my son required so much more from me than what his peers needed from their moms. I mentioned seeking an autism referral to friends and was met with responses such as:

“He’s a boy. Boys mature later than girls.”

“You’re a new mom. This is what motherhood is like.”

“You’re just imagining things. He’s fine.”

And my all-time favorite:

“Your son just needs more discipline.”

But yet another time-out would not end the meltdowns. Like seizures, the only way for them to subside was to let them naturally end their course. To onlookers, they appeared to be temper tantrums, but they were physiological responses to sensory input. Sometimes they were brief. Other times, they seemed to last forever.

At five-years-old, my son survived three days of kindergarten before my husband and I received the call that he could no longer attend classes until we met for a parent-teacher conference. I asked the school staff for documentation to share with my pediatrician and withdrew him from public school. I was now a homeschooling mom with a mission.

I met with our pediatrician and insisted on a referral to a local autism clinic. She was hesitant to follow through with my request, and even stated that she didn’t know if she would have given me the referral without the backup documentation from the school staff. A few months later, we received the diagnosis of Autism Spectrum Disorder.

“I’m so sorry,” people told me—as if I’d just received fatal, heartbreaking news. But I wasn’t sorry. I was relieved. Now I knew the path in front of me. My heart felt hope.

We pursued therapies like ABA and speech. He flourished in therapeutic activities like horseback riding, swimming, music lessons, and various art classes. Homeschooling allowed us to customize our schedule based on my son’s unique needs. We watched him persevere through many challenges as he learned tools to manage responses to sensory overload, navigate the social world, and handle frustrations.

I look back at how far we’ve traveled and see an amazing young man with a bright future ahead of him.

My son plays to the beat of a different drum. He lives his life outside the box of an increasingly one-size-fits-all common core world. He sets his own goals and dreams big. To look at him, one might see a typical ordinary teenager, but he is extraordinary.

And because of that, the road we travel is off the beaten path. Yes, there are sacrifices and hardships and struggles, but there is much more laughter and joy and reasons to celebrate. And as the mother of a teen on the autistic spectrum, I embrace this beautiful, joy-filled, extraordinary life of parenting on the autism road.