Can I tell you a secret? It’s a little embarrassing, to be honest.
We always thought our son Jack would recover from autism.
We thought he would “get over it,” or heal, or just morph into a regular old kid who likes to toss a baseball around and fly kites on windy days.
For years, we thought this.
I no longer think this.
He hates the wind. He says it makes him think of death.
I guess you could say we’ve come to terms with it, the whole autism-is-forever-and-ever thing. I mean, it’s impossible to live alongside something so real, and raw, and honest, and think it’s ever going to change.
I know it’s not going to change. And I always think I am over it. I am done grieving the boy I expected to have. I have made peace with the boy I do have.
Then every once in a while, something unspools inside of me, and I feel that old heartache again. I wish for the ball-throwing boy instead of the one who has memorized which restaurants serve Pepsi, and which ones serve Coke.
That’s grief for you—it reaches out and punches you right in the face when all you’re trying to do is order a soda in Bertucci’s.
I don’t know about other autism parents, but my triggers are almost always small.
It might happen when I’m sitting at my desk, filling out paperwork for another program or service.
Or when I hear a dad saying his kids have to get all A’s or they can’t play sports.
Or when I know the kids in Jack’s program are taking a field trip to the grocery store or wherever, and I picture the manager grumbling about how all these special needs kids are coming in for the morning.
My son has special needs. He will never get all A’s. They don’t even grade that way in his school.
My son has special needs. He goes to a special school.
This time, it was when the guys in our house who are installing tile in the upstairs bathroom asked where Jack goes every Tuesday and Thursday, when a young woman shows up in the afternoon and leads him out the door.
And I told them she is his caregiver. We pay her, and two days a week she takes him places like the YMCA to swim or to the Salvation Army to sweep the floors.
When I said the word caregiver, my throat closed up a little bit.
The worst part is, in the midst of all this grief, I have to do stuff. I have to load the dumb dishwasher and smile at the cashier and put chicken in the crockpot.
Maybe this is okay. Maybe the dishes and the chicken and the crockpot keep me afloat against the tidal storm of autism’s chaos.
I mean, here’s the big question. Where will he go after high school?
We had to hire a caregiver. Did I tell you that?
I am trying to meet him where he is.
Where is he?
It happens, that’s all I’m saying. No matter how much I think I’m over it, every once in a while there is a reminder that I am not over it. I may never, in fact, fully recover.
He is different.
I am different.
We are different.
I want to be great at this life with this boy and this diagnosis, but I am not. I am not great.
I am small and ugly and stupid. I harp on the dumbest things, you don’t even know. In the midst of this life with a boy who is trying so hard to make his way, I criticize him when he doesn’t stop humming. Or filling the sink with ice. Or just being who he is.
I hate myself.
When people see him in public, they tilt their heads and smile. They look a little bit sad, but also hopeful. They ask gently if we’ve ever tried essential oils.
It’s fine. I am telling you, this is all fine.
You never stop believing.
You never stop hoping.
You never stop.
My son has a caregiver.
This is okay.
It has to be okay.
So here’s what I do. When I feel grief’s cold fingers pinching me between the ribs, I run through a little exercise I call What I Know For Sure.
What I know for sure is Jack is fourteen-and-a-half.
He is over six feet tall. He wears a size thirteen sneaker.
He holds my hand in the parking lot.
He is scared of wind.
He has autism.
He will have it forever.
Every day, Jack gets up, and he takes a bath.
He eats his waffles.
He climbs into a small white van, and he heads off to school.
Each day, he rises, and he does it all again.
And he does it all again.
Maybe there is progress I do not see—tiny steps forward in this long, long journey we share.
Or maybe I should just stop looking for it.
The looking is the worst. It makes me tired. It makes me sad. It is ruining me. It is ruining us. I don’t want to ask him to be anything other than who he is, and yet I have to, all the time.
I will never stop hoping.
I will never stop believing.
But today, for just a few minutes, I will stop looking.
My son Jack.
I love him so much.
You would too. This I know for sure.
You know what? I was happy they asked. The tile guys. Because they cared enough to wonder.
Please, tell me. Tell me how to be in this world with this boy and not ache every single day.
I believe in him. I do.