I know, I know. I haven’t been to church in a while.
Yet I pray to you every day. My prayers are short, and to the point. In fact, I usually just say one thing.
Please, show me the way.
I mean a lot of things by this. I mean show me the way with grumpy teenagers, and in my marriage, and with the news all over the world.
Mostly, though, I am talking about my son Jack. He has autism, and lately I am feeling a little lost.
I need you to show me the way. Show me the road to patience and fortitude.
I will wear my most comfortable sneakers, and I will follow the path. With this boy by my side and the sun on our shoulders, we will put one foot in front of the other, and we will walk.
He will look at his Fitbit and remind me how many steps we’ve taken, and I will smile and tell him to hang on, we’re almost there. It’s not much further.
As day becomes night, we will walk. We won’t flinch at the raindrops, or veer off course. And when the moon glows softly overhead, he will reach for my hand.
Where is this going? Can you at least tell me that?
Because these days, it feels as though we are merely surviving.
He gets up at 6:00 am, and takes a bath. I remind him to clean up the bathroom. He sits at the counter and eats his breakfast—lately, its frozen waffles with Nutella—and starts to fixate on something we need, something random and odd, like vanilla extract.
And I’ll say, why? Do you want to bake something? And he’ll say, no, but we need it.
Then I say, I wasn’t planning on the grocery store today, sorry buddy.
And he starts to spin out of control, chanting vanilla vanilla vanilla.
Before I know it, I am counting the seconds until he gets on the bus and goes to school.
Every morning, some version of this happens.
During the day, I’ll be driving around, running errands and whatever, and I’ll remember something he said that made me smile. Before I know it, I’m pulling into the grocery store. After all, it’s just vanilla extract. It’s not a big deal, and so few things make him happy. Besides, I needed to buy more apples anyway.
When he gets home from school, it starts all over again.
We argue about homework.
We argue about getting Pizza Hut for dinner.
We argue about whether or not he should have another ice cream sandwich even though he already had an ice cream sandwich.
We argue all the way up until bedtime. To say this is exhausting is like saying the sun might be a little warm if you reach out a finger and touch it.
The whole time, that stupid bottle of vanilla sits on the counter—a small fuse in a long line of explosions.
When it’s time for bed he calls for me over and over and over again. He comes down the stairs to see where I am. I watch his fingers twitch and jump, and I think I might go right out of my ever-loving mind.
I don’t want to remember it this way. I don’t want it to be this way.
I don’t want to survive this boy.
I want to laugh at silly jokes and talk about going to the beach and ask him if he likes any of the girls at his school.
I want to dream about his future, not dread it.
I want lightness and laughter and ice cream cones on hot afternoons.
At this moment, the lightness is missing. There is no light. There is only dark spectrum frustration and I can’t see my way out of it.
Show me the way. Please.
It seems like there is so much I cannot teach him, no matter how hard I try.
For the life of me, I can’t teach him how to navigate around other people. You know, like when you’re walking through a place that’s kind of crowded, like the mall or a football game or after the fireworks on the Fourth of July?
It’s a disaster every single time. He can’t anticipate when someone might step forward, and he never, ever moves to the side and lets other people pass.
I cannot teach him how to answer to the name John when we’re in big important places like, say, customs in the airport.
He stands there, and he stares off into space, and the person in the serious-looking uniform asks again who John is.
I know, I know. I should change his name legally to Jack. That makes perfect, practical sense. It’s not a big deal.
But I just can’t seem to put it into motion. I can’t seem to download the paperwork and fill it out and submit it and magically change him from a John to a Jack.
It is a big deal because if I change his very name—the name I gave him in the hospital fourteen years ago, before we knew about any of these spectrum shenanigans—well, it’s like letting autism win.
Not that it’s a battle or a competition or anything! No, of course not! Autism is a part of my boy and I love him, so I love autism and at the end of the day there is no winning or losing, there’s just me and my son trying to figure out how to get through customs without a strip search.
But still. I can’t believe I have to actually change his name because of his diagnosis. It’s not right. It’s not fair. It’s his name.
He has such little working memory. The rest of us have a great big table where we store thoughts and ideas we don’t need in the moment–things we want to hold onto for later. Jack’s table is very small. It’s more like a nightstand, if that, and his thoughts and ideas keep sliding off onto the floor.
I don’t know how to increase a person’s working memory. How do I teach him to hold onto a thought in case he needs it tomorrow?
Mostly, I just make him do a bunch of stuff around the house, like change the shower curtain or assemble the new vacuum I ordered from Amazon—anything to light a small flame of pride, and motivation. Anything to make space on his table.
I can’t teach him forgiveness.
Every time I lose my patience or yell or get mad, I worry I am creating some hurt that he will never heal—that he will carry forever.
Please, show me the road.
Show me the road, and I will follow it. I will not question you.
Every day, I do the same things over and over and I stuff down my sense of futility. Do you know what futility tastes like? It tastes sour, like milk that went bad. It tastes like failure.
I mean, what am I doing? What am I arguing about?
The thing is, there are no experts in autism. Oh sure, people will tell you they have experience and they’re knowledgeable and all that, but the truth is, no one knows.
No one knows the right combination of academics and life skills and behavior therapy and stuffed crust pizza.
You made this boy with autism and then you gave him to me without any plan and then you laughed and laughed.
Well, I don’t know if you laughed. But I have to believe you smirked just a little.
Please, don’t take me too soon.
I don’t know how you decide when to let people stay and when to have them go, but please. Let me stay here on this planet so I can take care of him. I beg you. Don’t take me before he’s settled. Make sure he is ready, whatever that looks like.
In the meantime, show me the road.
Show me the road to independence, and forgiveness, and redemption.
Maybe it all starts with changing the shower curtain. I don’t know. It’s the only thing I can think of to do.
He never reaches for me.