Heart Song

The other night my son Jack laughed out loud. It was the kind of laugh that takes up space, and fills the room. It makes you think of the color orange, or the first time you rode a roller coaster. 

At a glance, this probably doesn’t seem like a big deal. After all, Jack is sixteen, and while teenagers aren’t exactly the most joyful people you might come across, they do laugh from time to time. 

Not Jack.

He rarely laughs. 

He hardly ever smiles. 

You see, Jack has autism. 

Hi.

My name is Carrie.

I am raising a son with autism. 

My story is not new, or groundbreaking, or especially unique. It is simply the story of a mother, and a complicated boy. It is a story of how day after day, we find our way.

I am told the average human heart weighs less than a pound.

It beats approximately 115,000 times a day, and sends blood carrying oxygen, food, vitamins and minerals that our body needs to move, think, grow, and heal.

What can I tell you, that you don’t already know?

When it comes to autism, you can’t take your eye off the ball for one single second. You can’t loosen your grip on the goals, or try to walk instead of chase. Autism is the lens through which life is sharpened, and clarified.

We did our best to teach him to stay quiet in church and to cut a meatball with his knife.

We taught him how to set the table for dinner—laying the plates out one by one—and how to switch laundry from the washer to the dryer.

Mostly, though, we taught him he could he could reach. That what comes easily for others may be a little—or a lot—harder for him, but it was his if he wanted it.

From the very beginning, we believed in him.

In teaching him to reach, we gave also him hope.

Hope, the double-edged sword, the bag of rocks up a long, uphill climb, the occasional falsehood that propels us forward. 

Sometimes people ask me what kind of autism Jack has, which is a very good question. I wish I could give an easy answer.

He isn’t a savant, if that’s what you’re wondering. He doesn’t swirl colorful blobs of paint into a masterpiece. He doesn’t play virtuosos on the piano, or recite long mathematic equations.

He sleeps with six pillows and one weighted blanket.

He is deeply anxious, and unapologetically honest.

He wants the same things for himself that everyone else enjoys.

The chance to drive down the street, a girlfriend, a life of independence. 

And yet, in less than two years, we will have to stand before a judge and assume guardianship so we can manage his medical plan and his financial arrangements and his living arrangements.

This will break him.

This is the kind of autism my son has. It’s the kind that is stingy with accomplishments, and rich in fear.

It’s the kind that knows the difference between who he is, and who he is not. 

It is the breaking kind. 

Hope. We clutch it between our palms like an invisible answer.

Every once in a while, I wonder what the world would be like if everyone had a child like my son Jack. 

I promise, I say this without bitterness, or spite. I am genuinely curious.

What would change?

Our barometer for success, certainly. 

Maybe we’d have more self-driving cars.

Maybe we’d all be apologetically honest once in a while.  

I guess we’ll never know. 

I think behind our wildly beating hearts is a song.

This song, well, it is our story of pork chops for dinner, the rare teenage smile, and pillows at bedtime.

It is the by-product of building a family. 

For many years, I thought my story was about a boy, and his autism. 

Perhaps it is simply the melody of every mother, spelled out on paper—the fierce hope, and loneliness, and fragments of joy we fearlessly bundle into each and every day.

Autism is my permanent lens, it’s true. 

Yet there are the briefest when autism ceases to be the center of it all. And in the space of exactly one breath, I can see this boy Jack for exactly who he is.

I glimpse his pureness, and his sincerity, and his spirit.

He has the strongest spirit you’ve ever seen.

He works harder than any person I have ever known.

I will chase his hope for as long as it takes. 

You cannot teach a person to laugh. They have to learn it all on their own. That is the beautiful thing about it.