Today: An Autism Mantra

Today, I will remember my son did not ask for autism, any more than he asked for light brown hair or a lazy eye.

If we have a rough morning and he says a swear word because he can’t get the lid off the peanut butter, I won’t get mad. I won’t grit my teeth and hiss JACK!

I’ll gently take the jar from him, and show him how to grip it tightly and twist the top.

If he thrashes and shrieks and throws his jacket to the floor, I won’t get mad. I won’t tell him to calm down already.

I will kneel next to him, and wait. And when the storm has subsided, I will cup his face in my palms and turn his face toward mine.

If it’s one of those days when the sock is too slide-y, and the tag is too itchy, and the world is too bright, I won’t try to convince him none of this is true.

I will cut the tag from his shirt, and find a new pair of socks. Then I will take him in my arms and hold his soft cheek against mine and tell him it is okay. It will all be okay.

He has always had the softest skin, my Jack-a-boo.

And if he doesn’t want to be held—because he hardly ever wants to be held—I will love him from afar. I will murmur soothing words and reach out my hand to touch his fingers the way I have done probably a thousand times before.

Again. I will do it all again.

I will remind him he is good.

I will remind him he is loved.

Sometimes I forget to do the reminding. Between the jars of peanut butter and the socks and the shrieking, I forget to tell him how much I love him.

Then I feel like a hideous person. I mean, really, who forgets to tell their own child they love him because they are too busy trying to teach him how to get the lid off a glass jar?

Me.

That’s who.

I forget.

Today, I won’t forget.

Today, I will teach when I can, and listen when I need to, and just love him.

I will notice all the quiet gifts he leaves behind—water in the Keurig, a dog bowl full of food, a blanket folded neatly on the couch.

He does this, you see. He observes things few people notice. It’s as if, by arranging the details, he can to set the world right again.

And as soon as he walks in the door from school I will look at him and I will smile and I will say hello. I won’t be too loud about it or too enthusiastic, because it scares him away like a skittish cat.

I will not be distracted by chicken cutlets cooking on the stove—see, I usually make dinner right after I eat lunch even though it makes me feel a little sick to my stomach—or ask him a zillion questions

I will simply say hello.

Hello, Jack.

With my heart and my brain, I will stay inside of this moment. I won’t worry if he’ll ever manage a bank account or what’s going to happen after high school.

I won’t wonder if we should have done more ABA therapy when he was little, or tried cutting gluten out of his diet.

This is his moment.

It is the moment he returns home after a day of social stories and audio books and lunch in a Tupperware container because there is no cafeteria in his school.

He listens to audio books. At first I thought he should read like everyone else from a regular book, but then we went to the eye doctor and she said people with a lazy eye like Jack’s—something called amblyopia,where one eye does all the work and the other eye sits back and relaxes on the couch—have trouble reading words on a page because they all squish together. The letters turn into tiny ants trying to get the last crumb at a picnic.

When she said this, I felt like a big, stupid jerk. Because I did not know.

I did not know about the words on the page, or the ants.

There is so much I do not know.

Today, I won’t worry about what I do not know.

I will not react to arguments about pesticides, or maternal bonding, or vaccines.

Our autism is genetic. It is the result of wonky DNA and biology and heredity.

I will work to understand the things he can’t do, and the things he won’t do.

I will stop thinking about the three orange vials holding three different kinds of pills sitting on the counter in the upstairs bathroom.

Green after dinner.

White before bed.

And now, yellow first thing in the morning.

He needs them, that is the thing. He needs them in order to put one foot in front of the other, and to slow his racing brain, and combat his high anxiety. He needs them to sleep.

He needs to take this medicine so he can get through the day. If he had a headache I would give him Tylenol and it’s not all that different. It is not my fault or his fault and there is no reason to be ashamed.

I am, though. I am a little bit ashamed.

Today, I will try my hardest to set my shame aside—the proverbial noose around my neck—and remember.

I will remember how he changed me.

I will remember the way he and his autism made me sit up, and pay attention to my own life.

This is autism’s privilege—it is the beautiful gift among the madness, the freedom bestowed by the spectrum’s slippery bell curve.

Autism is often hard. It is often confusing, and maddening, and complicated.

But some days, it is nothing more than enough water for a full cup of coffee, a blanket on a chilly day, and a happy puppy.

Today, I will remember that we all experience happiness differently.

We all experience success differently.

Today, I will do all of this.

Because I am his mother.

And he, my son.

I bonded with him when he was a baby. I did. I held him in my arms and I held him close, and dear.