My son is thirteen. His name is Jack. He has autism.
Oftentimes, there are no awards for people with autism. What I mean is, Jack will probably never climb the steps to the stage, and collect a piece of paper that says he made the honor roll.
He’ll probably never stand on a chilly football field and hear his name announced over the loudspeaker.
And the Most Valuable Player for this game? Jack Cariello!
The thing is, we autism parents are just like all you regular parents out there.
We worry about bullying and screen time and how old is old enough for a cell phone.
We buy their favorite foods and we coax them into wearing hats to school in the winter and we use a humidifier when the air gets dry.
We’re trying to keep our marriages together and our houses clean and figure out how much candy our kids should eat on Halloween.
But it’s like someone turned the volume up really high. We live inside a bubble of Technicolor, where everything is bright and loud and intense and powerful. It’s magnified.
See, every morning we wake up and we stare down the monster who lives within our son or daughter. We answer the same question a million times and we try to diffuse tantrums over the wrong cereal. Then we clench our teeth and we go about our day.
Autism parents live amidst a state of constant emotional conflict—on one hand, we’re so tired of the perseverating and the rigidity and the need for routine that we could simply sit down on the couch and cry.
Yet on the other hand, we would not trade this child for anything.
Autism makes us better.
He makes me better.
For the most part, we make peace with it. Except our peace is like a long, raggedy length of rope, and every once in a while it gets tangled into a big old knot. When this happens, we have to sit right down wherever we are, and we have to untangle it. You can’t stand and untangle a knot—it isn’t possible.
This is how we live our lives: peace-knot-peace-knot-peace.
We carry invisible clocks strapped to our backs. We are always racing against time, and the tick-tick-ticking is enough to drive any sane person crazy.
Like you, we want the best for our kids. Sometimes this means driving miles and miles to a different school, or for occupational therapy, or a doctor who specializes in treating kids who never sleep.
Maybe you Google the weather for the weekend, or check the stats of your favorite football team while you sit in your car and wait for ballet class to end or lacrosse practice to finish.
Autism parents? We sit in our cars while we wait for our kids to finish speech therapy–a place where they learn how to talk to one another like human beings instead of robots–and we Google whether or not the medicine we hand out every night to soothe their anxiety-addled spirits will cause any kind of long-term damage. We’re reading the latest education plan and trying to figure out if it’s worth trying gluten-free pretzels.
We can never stop. Oh, we want to—we want to stop our brains from churning and worrying and thinking, but we’re scared that if we take one single solitary second off, well, all hell will break loose. It is our hold on a chaotic universe, this worry. It is our way of doing something, even on days when there is nothing to be done.
In no particular order, these are the things we’re working on with my son Jack right now: not filling the sink with ice all day, doing jumping jacks whenever he needs to make his body calm, and using good words when he’s frustrated.
We are not working on his hoop shot, or his algebra, or helping him memorize scales on the piano.
Hopefully, one day soon he’ll accomplish the tasks we set out for him, and we will cheer and clap and celebrate. We’ll probably go to Dairy Queen, especially if he stops with the ice because that makes me nuts, to be honest.
Yet there is no way for me to showcase his small steps in progress to the world. His talents don’t translate to an audience, because the very things he works the hardest for are the things most kids usually take for granted—stillness of body, a quiet mind, a calm heart. And no ice.
For autism parents, performances and recitals are few and far between—instead, our stage is the grocery store, the middle of Chipotle, the line for a roller coaster on a busy day at Disney.
It is here where we pantomime the script we’ve ceaselessly practiced. Only there is no program handed out at the start of our play, and no standing ovation once the curtain closes.
When Jack was born, I kissed his cheeks a thousand times a day. I nibbled on his roly-poly thighs, and after his bath I zipped up his pajamas and smelled his sweet, downy head.
I loved him. I bonded with him. I promise you, I bonded with him.
Do I sound defensive when I say that? I’m sorry. I don’t mean to sound that way, but a lot of the literature that’s written about autism claims it’s the result of poor maternal bonding. That hurt me. That made me look back and second-guess many things about myself as a mother and a person.
Finally, after all these years, I finally know that autism is not my fault.
It’s not my fault.
Autism is not my fault.
His autism is not my fault.
Autism parents are just like regular parents. We rocked our new babies in the still of the night. We changed diapers and worried about teething and enjoyed precious few hours of sleep.
And as dark became dawn, we bent our heads and we whispered our hopes and dreams into soft pink ears shaped like seashells.
Maybe you’ll run track, just like your daddy.
Maybe you’ll grow up and be an architect.
Maybe you’ll fly a plane, or build skyscrapers, or have a child of your own.
Over time, however, we’ve replaced our dreams with a compromised version of the original. Slowly, as the years pass by and the milestones go unmet, we don’t say maybe anymore. We say probably won’t, and can’t, and—the one we hate the most—never.
He probably won’t drive.
He hates any kind of sports.
He has trouble holding a pencil.
He may never live alone.
You never know what a beautiful word maybe is until it no longer crosses your lips.
But it isn’t all bad. I have a little secret to share. We autism parents, well, sometimes we take the tiniest pleasure in getting out of all the things you neurotypical parents have to do.
Soccer tournaments, for one.
Signing report cards, and loud birthday parties at places like Chuck E. Cheese, and monster truck rallies.
Listen, don’t be mad at us. We have to laugh every now again or we’ll otherwise just crack right in half. We are weighted down, what with the clock, and the tantrums, and the rope. We need to look for the smallest shimmer of light in the middle of a somewhat gray landscape.
As an autism parent, I’d like to ask just a few things of all you amazing neurotypical parents.
First of all, don’t be sorry. Don’t feel bad about what you have, and who you love, and the family you were given.
If you see us in the grocery store or at the ball field, try not to comment on our haggardness. Autism is slowly aging us, and we already know how exhausted we look.
Also, if you see us running errands or exchanging pajamas at Kohls and we seem a little grumpy, try not to take it personally.
There’s a good chance we haven’t slept in days. Or maybe we just found out anti-anxiety medicine can cause a third eye that grows right beneath the hairline. Who knows? It could have just been a regular old Monday morning but it was raining out and he won’t step foot in the rain until he’s checked the weather thirty million times. You know, because of the rain.
The thing is, as parents, we all want the same things.
We want to laugh at our mistakes, and make the right decisions, and love our children for exactly who they are.
More than anything, we want to hear someone to tell us we are doing a-okay.
I want to do that for you today. Yes, you. You, sitting and reading this right very moment. You are doing a bang-up job. Don’t ever forget it.