Just One Day Without Autism

Hey, Jack. You know how you have autism, right?

I mean, we’ve never kept it a secret. It’s something we talk about a lot, actually.

We talk about how, because of autism, your brain sometimes stays stuck on certain ideas, and you have a lot of fears about ordinary things, and your body jumps and twitches a lot. The doctors call it perseverative behavior, and anxiety, and self-stimulation, or stimming for short.

We talk about all the other millions of people who are diagnosed with it, and where it came from, and why it’s yours.

We talk about how it makes you special.

But I can’t lie. Sometimes, I wish we could all have a little break from it, even if for just a day.

There are so many things I would do.

I would hug you tightly with both of my arms and you wouldn’t squirm away from me as if I had the plague.

I would talk to you.

I’d give anything to talk to you.

Oh sure, we talk now, but it’s not the same. It’s scripted. It’s robotic. It’s an exchange that lacks nuance, and flow. Basically, it’s like talking to Arnold Schwarzenegger, assuming Arnold Schwarzenegger likes to talk about Oreos and Disney princesses.

Just once, I want to have a conversation that has nothing to do with movies, or Funfetti frosting, or Minecraft. I want to have a regular old back-and-forth exchange.

I want to tell you stories about how my brother John and I picked blackberries from our neighbor’s bush when we were kids, and the way we would run like the devil when we heard them open their back door.

I want to tell you

I want to tell you how we called my grandfather Pop, and he had blue eyes just like yours.

I know, I could tell you all of that now. But the sentimental details would be lost to you—instead you would tell me over and over that the devil can’t run, or ask me a million times what time of day my grandfather died.

If I could have one day without autism, I would ask you lots and lots of questions. There is so much about you I long to know—things you can’t find the words to explain.

I would ask you if you believe in God, and why you always wear turtlenecks in the winter.

I would tell you all about your autism, and how it makes you a better person and me a better person and I really do love it, even if sometimes it is hard for us both.

I would tell you how I constantly balance the boy you are, versus the boy I expected you to be.

I’m not asking for forever. I’m just asking for one day—just one whole day with you when you aren’t twitching or clicking; when anxiety releases it’s angry hold upon your spirit and your face relaxes into an open, easy smile.

You rarely smile.

For twenty-four hours, your body would be in precious harmony with your mind—for once, you would be wholly thirteen, instead of an 8-year old trapped in the perpetually changing state of adolescence.

I would take you to lunch somewhere different, and exotic—for Indian curry, maybe, or for Pho at my favorite Vietnamese restaurant—places that do not offer chicken fingers or cheese pizza.

I would sit across from you at the table, and watch your face open in delight with each new flavor. I wouldn’t have to remind you to use a fork to twirl the long noodles.

No one would stare at you. I wouldn’t have to do that weird shrug I do and try to catch other people’s eye so I can mouth autism in their direction so they know you aren’t rude or naughty or annoying.

Sitting in the restaurant together, I would explain to you that I am working so hard to help the world really see you, and know you, and understand you. I am your advocate. I never, ever want you to feel invisible, or alone.

I would tell you how sorry I am for all the times I snapped at you, and all the times I lost my patience.

I am sorry.

I am trying.

For one day, I could enjoy you. I could just let go and be your mother, instead of always teaching and prompting and directing and re-directing.

Use your words, Jack!

No, no, don’t touch, Jack!

One bite, Jack, try just one bite of corn.

After lunch maybe we would walk through the park and feed the ducks. We would be without destination or schedule. We would meander.

See, buddy, you don’t meander. You want your schedule—you want to know where we are going, and how long it takes to get there, and exactly when we’re leaving.

And as the evening sun began it’s slow descent through the sky, I would look out the kitchen window, and see your silhouette retreating into the dusky twilight.

After a minute, your shadow would multiply into two, then three. Friends.

I would step onto the porch and call out to be safe, and to be back in an hour because you have baseball practice the next day. You would call back to me, your voice rising above the laughter.

Okay, mom! I’ll be back! Love you!

You hate baseball.

You hardly ever laugh out loud.

For just one day, the tension in my neck would ease and I could think about something else besides your progress, and your future, and how on earth I am going to teach you about things like mortgages and safe sex and politics.

One day, that’s all I want.

And late at night, when the house was quiet, I would tiptoe into your room and adjust the covers around your neck while you slept a deep sleep.

I would kiss your sweet face and take one more moment to admire your smooth, untroubled brow and I would know that it is time. It is time to return to our life as we know it—a life full of hope and despair and possibility and regret.

Our life with autism.

I wouldn’t be sad. Really, I wouldn’t. I would simply tuck the memory of your sunny smile away, and hold onto it for the days when the rain won’t stop.

I would know that I have said all the things I long to say.

You are not invisible.

Pop would have loved you.

Oh, and if you think a devil can’t run, you should see Uncle John sprint across the yard with a mouthful of blackberries.