A Day in the Life with Autism

I turn over and squint at the clock. It’s 6:14 in the morning. I was in the middle of a dream, something about the beach and waves crashing.

I hear the shower turn on down the hall, and the familiar tone of a voice. I can’t make out the words.

By 6:31, he is done showering. He stands outside my door, and taps one, two three, times. He wants to make breakfast.

First he asks if he can make pancakes and I tell him no because he smears pancake batter everywhere and it gets on my nerves, so he huffs and stomps downstairs and makes eggs. He likes eggs.

I get out of bed. I brush my teeth. I feel a pinch of guilt. 

He likes eggs, but he loves pancakes. 

Why couldn’t I just let him have the pancakes?

And so it begins, the emotional roller coaster of raising a child on the autism spectrum.

My name is Carrie.

I have five kids.

My second son is diagnosed with Autism-Spectrum-Disorder-All-In-Capital-Letters.

He is fifteen, and his name is Jack.

On any given day, we are working on about five or six behaviors—like the way he pulls the drawstring form his shorts up and chews on the end, or the tone of his voice when he answers a question, or his habit of picking at the back of his ear.

I walk downstairs. I let the dog out. Jack is sitting at the counter, finishing his breakfast. Three brothers and one sister flurry around him, collecting backpacks and lunch and binders.

See, only Jack is home today. After a long summer of school, he has one week off while the rest of the kids have already gone back.

I thought it would be fun, just him and me. 

But it is a long morning. I try to keep him busy with simple jobs like starting the laundry and emptying the dishwasher, otherwise he follows me around and perseverates on random topics. He has no interests, no hobbies–no activities like painting or reading or throwing a ball to fill his time.

I need to make some phone calls, so I let him organize the DVD’s for a while. This is one of his favorite pastimes.

At exactly noon, we head out for lunch. He chooses a restaurant in town because they have soft pretzels as an appetizer. Also because they have Dr. Pibbs, which in case you didn’t know, is a version of Dr. Pepper made by Coca-Cola.

We sit at the counter and I try to swallow my annoyance because he has been talking about lunch and these pretzels for the last hour and a half.

Is this all there is, I wonder?

Food and schedules and DVD’s and soda?

The servers recognize him. They smile his way.

He asks me about my favorite episode of Caillou—the preschool show about a boy and his family.

I gently push his hands down from his mouth. I notice his cuticles are ragged. 

My heart sinks.

The server brings our drinks—hot chocolate with whipped cream for him, iced tea for me.

He recognizes her from last time. He asks about her cat.

My spirit flies kite-high again.

And this is the pattern of my day with autism—ebbs and flows, peaks and valleys.

Please, stop asking me about the weather.

Please, stop asking me about Caillou.

Please, stop biting your nails.

I can’t do it. I can’t take one more single second of it.

Yet, I do.

I do because I have this tall boy looking at me and he is so uncertain about who he is and where he fits and he is mine to safeguard. He is mine to love.

After a quick stop at Target, we are home again. I look at my desk and see a stack of paperwork I need to finish.

Oh, and the paperwork. There is always, always a bunch of forms waiting for me to fill out—questionnaires about changes in his diet and if he’s responding well to the newest medication and whether he’s sleeping better.

He turns on the television. He seems involved, so I pick up a pen and head to my office.

While I make notes, I listen for him.

I always have to listen for him.

Is he playing with the laundry detergent again?

Or turning on the oven to bake a cake?

Or rooting around in the basement to look at the Christmas ornaments?

After about ninety seconds, he joins me in the office. He positions himself on the window seat, and begins the thread of conversation we abandoned at lunch.

How many episodes. Of Caillou. Have you watched.

When is the first time. You tried Dr. Pibbs.

Without the benefit of an airplane or a helicopter or a jet, I am constantly moving between time zones—the past and present and future.

Yes, there was a time when he didn’t talk and now he talks a lot but it’s about meaningless things and it’s one thing to talk about Dr. Pibbs when you are a teenager but he can’t do that forever.

Who cares, if it makes him happy? He isn’t hurting anyone.

He is hurting my ears. He is hurting my soul.

I will never change his autism. 

But I do have to soften the edges of my square, square boy, so he may somewhat fit in our round world.

This is not easy work.

It’s like screaming into the wind. You hope that, just once, you say and hear and do one thing that makes sense.

I mean, it takes so little to make him happy.

A hot shower, a stack of pancakes, a little conversation about soda.

Why can’t I just indulge him?

Well, for the same reason we can’t indulge the whims of every child—because if we do, they will never learn to reach for more.

The kids come home from school. There is a buffer—however brief—between autism and me.

Dinner.

Stimming.

At last, bedtime.

He heads to bed around 8:30, after he takes his medicine.

He comes down the stairs a bunch of times to check where I am, even though I am in the exact same spot I was the first forty-three times he checked.

I am done.

For this day, I am done.

I will never be done.

He will not hug me goodnight. But he will let me squeeze his shoulder.

After one last walk up the stairs, he is asleep.

Another day behind us.

It was a good day. Sitting at my computer, I think about the conversation in the restaurant that afternoon. I smile.

Is for your cat. Feeling better now.

In his own way, and his own time, he is reaching.