My son Jack is 13 years old, and he has autism.
His brain is wired in a different way.
Because of this, he doesn’t read social cues or fully comprehend language or understand why you shouldn’t ask a woman if she is pregnant.
On top of that, he is anxious, so people make him nervous. Loud noises make him jump. He has to check where I am in the house, oh, a million times an hour.
He has a little bit of what’s called sensory processing disorder. He has to touch all of his food with his fingers to make sure he likes how it feels before he puts it in his mouth. He is always trying to regulate his body through self-stimulation. He rubs his hands together fast, like he’s warming up by a campfire. He hops all the time.
I have been thinking about this boy and his future and his anxiety and his obsessive habits for 13 years. Not a single day has passed when my stomach hasn’t squeezed together because of it.
The thing is, lately, it feels like we are a little bit stuck. He’s not really getting any better.
I mean, I knew he was never going to get better in the traditional sense. He was never going to be cured of autism, or healed, or shed his diagnosis like a snake sheds its skin. It’s just that, at this point, we have been working on some of his behaviors for years.
Things like swearing. Not touching all the food on his plate. Not touching all the food on my plate. Boundaries. Flexibility with the radio station in the car. Flexibility with what we watch on television. Flexibility in general.
Raising a child with autism is kind of like going for a boat ride in the wide, open water. One minute it’s all smooth sailing — the radio is playing softly, no one is screaming a profanity ― and all of a sudden you come to an abrupt stop, like the anchor has dropped.
Right now, in our little boat, we are standing still. We have not moved forward a single inch against the tide for quite a while. And this standing still might just be the hardest thing for me.
Is it harder than all of the nights my husband, Joe, and I stayed awake, passing our infant son back and forth between us and trying to avoid each other’s eyes?
Or researching a bunch of different medications to help alleviate our son’s crushing anxiety?
Or having to tell him one hot summer afternoon that he was going to a different school because he couldn’t meet the academic standards of public school?
I don’t know.
“Raising a child with autism is kind of like going for a boat ride in the wide, open water. One minute it’s all smooth sailing — the radio is playing softly, no one is screaming a profanity -- and all of a sudden, you come to an abrupt stop, like the anchor has dropped.”
I’m tired of thinking about it. I’m tired of autism.
I’m tired of trying to keep him occupied all weekend when my four other kids have a bunch of activities and birthday parties and sleepovers, and he has nothing to do.
I’m tired of worrying if the medicine he takes before bed every night might have some awful side effect or make him grow a third eye.
I’m tired of telling him to use his good words and asking him not to scream and trying to figure out how to get him to stop organizing the DVDs all afternoon.
At the same time, I love him. I love him, can you see that? I love him so much.
But some days, I wish I knew where all of this was going.
Oh, I know, I just have to hope. Don’t worry, I know all about the hope. I have strapped hope to my back and lugged it up big, steep mountains. I have kept it warm and dry on rainy days and admired it in the bright sunshine.
Hope is the fishhook in my mouth, the carrot ahead of the donkey, a rusty anchor at the bottom of the sea.
And after the hoping, here we are. We are rocking in our boat, beneath the angry glare of an orange sun. No progress. No change. No movement forward.
In the meantime, I go about my day.
I listen to “Hamilton” on the treadmill. I murmur namaste at the end of yoga class. I cook my repertoire of basic meals — pork chops and meatloaf, and, if it’s warm enough, chicken or steak on the grill.
But inside, I am smothering a small storm. I am cycling through my list of worries on the Autism Balance Sheet — you know about the Autism Balance Sheet, right? It’s an ongoing tally of goals and progress and setbacks and research and doctor’s appointments that people like me, who are raising kids with autism, keep in our head.
I scan down The List and I decide which one I want to focus on for the day, or even the week. Lately it’s been a high school diploma, specifically the fact that I’m not so sure Jack is going to get one. All this time, my husband and I were determined to help him graduate from high school. No, that’s not true ― we were determined to make him graduate from high school. That was our ultimate goal, except it’s not looking so good right now.
Do not, for one hot second, get me wrong. Jack is not stupid. He is not a dummy. And yet he will likely never understand algebra, or write an essay longer than two paragraphs or complete a senior project.
And honestly, what is the point? What is the point of agonizing over formulas and having screaming matches about whether or not a = b? Is that really the best use of our time with this child?
“No one warned me how hard it would be. No one warned me how deeply it would hurt to let go of the dreams I’ve been holding tightly with both hands for all these years.”
I have actually pictured his high school graduation. Can you believe it? I actually thought to myself, if we can just get him to graduate and cross that stage, then it would all be better. He’ll be better, and this will be somewhat behind us.
The truth is this is never going to be behind us.
And still, I have hope.
I mean, as parents, we all have to give up on certain dreams. Maybe you dreamed your son would be an architect just like you, but the first time you saw him build a tower out of Legos, you knew it was a long shot. Or maybe you dreamed your little girl might grow up and be a doctor, but she is terrified at the sight of blood, so you had to readjust your vision for the future.
But how many of us can say we have given up on the dream of our child getting a high school diploma?
No one warned me how hard it would be. No one warned me how deeply it would hurt to let go of the dreams I’ve been holding tightly with both hands for all these years.
Dreams are fragile, especially when it comes to autism. They are like the colorful, luminous wings of a lovely butterfly. You have to handle them very carefully and respect their delicate nature. Otherwise, they lose their color, and they turn to dust.
I was terrible at algebra, too.
The water is rising.
I can’t see the end.
And still, I hope.