The joys and challenges of parenting an autistic child

The Autism roller coaster is a ride you don't have the luxury to depart from. Once you have your ticket and board, you are on it for life. No returns, no exchanging your ticket.

I boarded the Autism roller coaster without realizing it.

In 2013 I took my son to his pediatrician for his 2-year check-up. She asked basic questions and I could tell she wasn't happy with the answers I was giving her: no he doesn't stack blocks, no he doesn't turn his head towards my voice, no he isn't saying any words.

While I was upset at her for making me feel like my son was broken, she was the only person who noticed that something was not right.

So off we went to get a hearing test done. When that was normal, we started Speech Therapy. A little while after that Occupational Therapy started, and not too long after that was the referral.

Once we were referred and on the waiting list, I realized that we were on a different ride than I wanted to be on. I wanted a smooth fun ride full of laughs and smiles. This roller coaster started out with sharp turns and uncertain paths. And in that moment, I would have given anything to get off. But I couldn’t. Instead, I needed to learn how to be the best advocate possible for my son.

Then in 2014, we were ascending slower to the top of the roller coaster. We were at the specialist. My son was being assessed by multiple professionals, and finally they came into the room and said the words that rocked me to my core, "Jaxon has Autism."

When hearing those words, no matter how prepared you are, you feel like you just hit the top of the roller coaster and you are plummeting down. I was scared, nervous, and uncertain of how this ride would end.

Throughout this roller coaster ride, despite the sharp turns and giant loops—it has also been filled with giggles, tickles, smiles and love. So, so much love.

But once we hit the bottom after finding out Jaxon’s diagnosis, we started to move along the twists and turns of the school system. My son loves school so it was pretty smooth for a while. But as other Autism parents know, there are smooth parts which are fun and fill you with hope, and then there are the regressions. The gut-wrenching regressions where you don't know what you're going to do.

With the smiles and giggles and laughter, also came the regressions and questions and the feelings of desperation.

Like the regression my son had when he lost all of his words. I thought, How could this happen? ‘We've worked so hard and now it's gone? I was feeling nervous and uncertain. And then, before I knew it, we were at the top of the roller coaster again when my son gained his words back and then some.

Or the regression my son had when he became very aggressive seemingly out of nowhere. Aggressive towards me, his grandma and his classmates. He had become a child who would hit me and knock the breath out of me. He became the child who hit me in front of our family and I saw the shock on their faces before I left the room to cry. I was mortified. I became the mom who flinched when my child would run up to me. I was so tense that my body was sore constantly.

You battle being stuck upside down for months until finally, the roller coaster flips you back again—right side up. The aggression disappeared, his vocabulary increased to where he could verbalize himself more. We were able to communicate better.

But I have found that when we’re riding the fun part of the roller coaster again, I’m watching and waiting. Waiting for the next flip or sharp turn. You wait for the next time you are stuck upside down and you prepare yourself. You build up your toolbox and get ready to help your baby when he needs it.

Even though this roller coaster can be wild and there are many unexpected twists and turns, there is such beauty in my son and our relationship. After every setback and every meltdown, the milestones are that much sweeter.

Everything we work on together feels like we are rising up into greatness and we can conquer anything that comes our way. I know that all of his teachers and specialists have our back and it's nice to know that there is a village around us cheering us on.

The Autism roller coaster is not a ride that anybody chooses to ride, but it is the one we are on. So while we’re at the top, I will enjoy the view. And while we are fighting our way through the bottom, I will use my strength and push through—because I am riding this ride with my heart: my son.

Jamie Henderson is a single mother of Jaxon, a sweet 7 year old with Autism. She writes about the struggles and victories of their shared journey on her blog, as well as her Facebook page. She shares her story in hopes that others will learn and grow to understand and accept Autism.

Comments ( 0 )

    Motherly provides information of a general nature and is designed for educational purposes only. This site does not provide medical advice, diagnosis or treatment. Your use of the site indicates your agreement to be bound by our Terms of Use and Privacy Policy . Information on our advertising guidelines can be found here.