The Autism Roller Coaster

The Autism Roller Coaster

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

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 that 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.  Now 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. I would have given anything to get off.

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.  You are scared, nervous, and uncertain of how this ride will end.

Once we hit the bottom, we started to move along the twists and turns of the school system.  My son loves school so it was a pretty smooth ride for a while.  But as other Autism parents know, there are smooth parts which are fun and give you a glimpse of hope, and then there are the regressions.  The gut-wrenching regressions where you don't know what you're going to do.  Yet again we are plummeting down the roller coaster heading towards regression.  It came to be that my son had lost all of his words.  How could this happen? We've worked so hard and now it's gone? I'm nauseous and full of uncertainty.  And then, we are at the top of  the roller coaster again where my son gains back all of his words and then some.

We had a nice stretch of fun riding our roller coaster.  Lots of giggles, tickles, and smiles. Until one day, we flipped upside down and we were stuck there.  My child had all of a sudden become aggressive. Aggressive towards me, his grandma, and his classmates.  He had become a child who would hit me and it would knock the breath out of me.  He would kick me in my ribs while standing behind me. He became the child who hit me in front of our family and I got to see the shock on their faces before I left the room to cry it out.  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.  The aggression dissipates, his vocabulary increases to where he can verbalize himself more.  And while you're riding the fun part of the roller coaster yet again, you're watching and waiting.  Waiting for the next flip, or next sharp turn off of the path that you wanted to be on.  You wait for the next time you are stuck upside down and you prepare yourself. 

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

The Autism roller coaster is not a ride that anybody chooses to ride, but it is what we are on.  So while we are 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.