My name is Carrie.
I have five kids, and my second son has autism.
His name is Jack.
He is fifteen years old.
In my mind, I picture autism to be a huge tapestry with a lot of bright, vibrant colors. Actually, I don’t picture the front of the tapestry, but the back of it—where the yarn is tangled and crisscrossed and a little bit messy.
Even with all of its loose ends and knots, it is unexpected, and unusual, and strangely beautiful.
Jack also has severe anxiety.
Anxiety is not beautiful.
If autism is crisscrossed colors within his complicated mind, than anxiety is the white-hot bolt of lightning rocketing through it like an electrical current.
Faster and faster the current races, until his mouth can no longer keep up with the ideas and letters and words racing through his brain.
So then he ruminates. This is a fancy word scientists use to describe looping, repetitive thoughts related to anxiousness.
This rumination is the bane of my very existence. It will probably land me in a mental hospital one day.
Let me try to give you an example.
Say you have a roommate. For the purpose of this story, we’ll call him Zack.
One day you and Zack take a walk. Zack suggests seeing the latest Disney movie. You tell him you don’t really want to see it.
He says you should see it.
You say you don’t want to see it.
He asks what time is good for you.
“Well, Zack, see my mother has that surgery and—“
“When she is done. We will go.”
The next morning during breakfast Zack mentions that he’s checked the reviews, and the score for this movie is high.
And you repeat yourself, “Zack, I am not going to that movie.”
Then Zack lists all the showings of said movie in your town, and a few surrounding towns as well. He explains where you can find the best popcorn.
You set your coffee down and think to yourself, well, why not? Maybe you should go to the movies. What’s two hours out of the day if it will make him happy?
At the exact same time, you feel a bubble of rage in the back of your throat. He cannot always get his way just because he hounds you about it. Honestly, what’s next? You just have to be firm.
“Zack, no. We are not going to the movies today.”
Zack nods, and you nod back. You take a bite of your bagel, satisfied. Just before he drinks his milk, he speaks again.
“It is. Only two hundred and sixteen days. Until Christmas. We should plan the menu.”
At this point, you might put out an ad for a new roommate.
I cannot do this, obviously.
Nor would I want to! Don’t even think that for a hot minute!
Maybe this seems pretty harmless to you. Maybe you are thinking, hey, so he repeats things. No big deal.
It’s kind of a big deal.
It is exhausting, and relentless.
You see, when it comes to autism and anxiety, nothing is little. Everything is magnified.
It all has to purchased or consumed or planned the exact same way it was last time.
After a while, it starts to feel like an ice pick making a slow grind within your eardrum and you feel crazy like you might snap and make a terrible face and say awful things.
That’s what Zack’s mother told me, anyway.
I cannot heal him.
Can you see this?
I cannot heal him.
I am not talking about curing him. There is no cure for autism. I know this now.
I’m talking about healing him—soothing the savage beast of anxiety and cooling the lightning bolts which light up his brain.
Perhaps this is the beating heart of the spectrum matter, so to speak.
My child is in distress all day, every day.
He is anxious, and scared, and nervous, and worried.
He repeats himself constantly.
I cannot help him.
If he had a cut on his thumb, I would give him a band-aid.
When he gets a headache, I carefully dole out Advil into the palm of his hand.
Oh sure, we give him medication for his anxiety—three different kinds, in fact.
But still, it isn’t enough. The orange vials sitting on the bathroom counter upstairs do not release him from the ties that bind his very soul.
You know what I want? I want one hour with him.
One hour, that is all I am asking for—sixty minutes when the obsessions cease, and his body stills, and I can catch a glimpse of the boy he might have been.
Sure, autism makes him complicated. It makes him rigid and a little prickly and kind of, uh, direct.
But anxiety stole what little there was left. It stole my son from me.
It crept in like a thief in the night and it took my mysterious child and it turned him into a shell of his former self.
If I just had an hour, I would fold him into my arms. I would stroke his soft brown hair.
I would ask him if he’s happy.
Does he want more?
Is there something we’re not giving him?
Of course, I could ask him that now. But his answers would be unrelated, or short, or he would just stare down at his hands and rub them together in a way that always reminds me of a campfire.
He would never, in a million years, let me stroke his hair.
Some people cross their fingers and pray for medical school, or an engineering degree, or a position in the Navy.
Me? I just wish I could talk to my son.
I want an hour where I don’t have to redirect him, or gently pull his fingers away from his face, or tell him to stop—for the love of all things holy—stop asking about Christmas before I lose my mind.
I want to know him.
I want to be enough for him.
I have never worked so hard at anything in my life.
I know a boy who is unlike any other boy I have ever known.
A boy who wears his heart on is sleeve, while quietly holding a diagnosis against his heart.
And in the mess of knots and tangles lies the most colorful story.
Hallelujah, to know this boy.
For when hope whispers her song gently upon our spirit, then together we begin to heal.