Breathing Space

My son Jack has autism, anxiety, and obsessive-compulsive disorder. 

He was diagnosed with autism before he was two.

Anxiety crushed him like a ton of bricks when he was six. 

And obsessive-compulsive disorder? Well, we have no start date for that. It simply seeped into our lives like water in the basement. 

Every once in a while, all three join forces and create a storm inside his soul. It is heartbreaking and frustrating and incredibly sad to watch as, bit by bit, this trifecta dismantles him.

Sure, he goes through the motions of his day. He gets up in the morning and toasts his bagel and heads out to school.

When he gets home, he lies in his bed, rocking and listening to his music. If it’s a day he works, he changes into his uniform—black t-shirt, denim shorts—and starts to circle the kitchen until it’s time to leave.

He eats dinner. He packs his lunch. 

But there is an edge to him. 

He is agitated, and angry. He paces the room. He snaps at us and talks to himself and is always in distress.

There is no breathing space. I simply want to breathe again. 

Autism is beckoning. With a long, crooked finger, it lures this boy of mine into a world of isolation.

At the same time, anxiety creates panic and chaos. It reminds him of all the reasons he’s afraid.

And obsessive-compulsive disorder whispers in his ear that is hands are dirty, the clock is wrong, his glasses need cleaning. And so my son washes his hands until they are raw and chapped. He picks his cuticles until they bleed. He carries wipes in his pockets and cleans his glasses dozens of times an hour.

We’ve been here before. It usually happens in early spring, before the trees begin to bud their tender green leaves.

It’s never happened in autumn. Yet here we are, with brilliant explosions of color throughout the landscape, while inside our house we sludge through the gray.

I wasn’t expecting this. 

You see, when it comes to this boy, I constantly try to stay one step ahead. I try to predict and foresee.

Will he run in the parking lot?

Will he shriek in the movie theater?

Will he grow up misunderstood, and marginalized?

Can you see him?

Can you see this earnest boy with the wipes and the water and the red, bleeding hands?

There are moments when I’m not sure I can survive it. 

If I can’t survive it, how can he?

I don’t want to remember it this way. I don’t want it to be this way.

I don’t want to survive it.

I want to laugh at silly jokes and talk about memories at the beach and tease him about having a crush on a girl.

I want to dream about his future, not dread it.

I want lightness and laughter and pumpkin patches.

At this moment, there is no light. There is only dark spectrum frustration, and I can’t see my way out of it.

I can’t reach my son. 

Every time this happens, I’m scared I’ll lose him forever to this inner turmoil. I worry he’ll never come back to us.

At night, when the last fork is loaded into the dishwasher and we’re all settled on the couch, he begins to pace. 

In and out of the kitchen, through the living room, past the couch, and around again. My six-foot, four-inch tall teenager weaves and paces and rubs his hands and mutters under his breath. 

And that’s how I know. That’s how I know the powerful threesome that is autism-anxiety-obsessive compulsive disorder have aligned once again, like planets in the solar system of his spirit.

For me, the pacing is the hardest. Every night I vow not to get frustrated. I promise myself I won’t tell him to sit down, to stop walking and talking. 

And every night, I fail to stretch my patience any further than I did the day before.

He usually winds down after a few hours. Finally, he sleeps.

In bed myself, I lie awake and I wonder what will happen when I’m gone. 

Who will understand he needs to check the clocks every five minutes to make sure they tell the right time?

Who will remind him to stop picking, and gently guide his hands away from his face?

Who will look beneath the brittle shell of anxiety, and see the boy himself?

Who will reach him?

Every day I remind myself, it’s not who he is, it’s what he has. 

It’s not who he is.

It is what he has. 

This what I tell myself when I feel helpless.  

I feel helpless.

I fiercely love who he is. 

But sometimes I hate what he has. 

I refuse to lose him to it.

Onward.