One Thousand Paper Cuts

My name is Carrie, and I am raising a son with autism.

It is exactly nothing and everything I ever imagined.

The truth is, I’ve wished for a crystal ball ever since my son Jack was a toddler. I desperately wanted to see into his future.

Would he speak in sentences? 

Would he be able to sit still during circle time at school?

Would I ever stop grieving the boy I expected, and celebrate the one I had?

You see, my grief is like a bunch of feathers. It floats around my periphery—not quite blocking my view, but definitely getting in the way.

It funny, but I never thought much past, say, fourth grade. I never tried to picture him any older than an 8-year old. 

I never imagined what puberty might be like, or if he’d have a girlfriend, or if he’d drive a car, or get a job.

Perhaps this is for the best. After all, naiveté can be very helpful.

He is sixteen now. 

Every once in a while, I still feel a pinch of grief.

It’s nothing terrible. It’s like a small paper cut. 

It’s not enough to make me stop what I’m doing, or grab a Band-Aid. 

It’s enough to make me think for a second, and wonder. 

And when I get one all patched up, another comes along. 

For me, the paper cuts change by the month, and the week—sometimes even by the day.

Lately it’s his glasses.

See, he has these wipes he uses for his glasses to keep them clean. He keeps a bunch of them in his pocket, and every twenty minutes or so he takes one out, unwraps it, and sniffs the damp cloth. Then he carefully removes his glasses, and wipes down each lens.

Twenty, thirty times a day he does this. 

Watching him, I want to scream.

No, that’s not it. 

I want to cry.

I want to cry for reasons I can’s quite explain myself.

I want to cry because of the way autism takes a perfectly ordinary activity, and transforms it into a full-fledged nightmare. 

I want to cry because I will feel these small stinging cuts for the rest of my life.

I want to cry.

And every once in a while, I do.

Every once in a while, I let the feathers out of the box. I let them float free, and wild.

He impresses me every day. 

Well, almost every day. Yesterday he said a lot of bad words after he came home from school and that did not impress me very much.

If you show him something once, you’ll never have to show him again.

How to spray cooking spray evenly across a baking sheet, how to read a map, how to log into Amazon and order a Disney movie. 

I do wish I never showed him the Amazon part. I have definitely created a monster here.

I am raising a son with autism.

It’s exactly everything, and nothing I ever imagined.

I know I am not alone. There are many, many people around the globe working to understand the complicated child sitting across the dinner table. 

What am I saying? There is no sitting, because more often than not, this child is whirling, jumping, spinning, and shrieking.

The question is, how do we heal?

How do we heal from a diagnosis that changed our family, our marriage, our very sense of who we are?

How do we heal, even as we stand in the very midst of this lifelong journey?

Experts suggest the healing process involves acknowledging the problem. And if you have suffered a loss or are going through a major life change, you may be dealing with some form of anxiety or depression. 

I don’t think this applies here.

I am not depressed.

I am tired. 

He is not a problem.

He is a boy.

There is no major life change. 

There is simply the day-to-day highs and lows of loss, and gain. 

I don’t think there is an expert who can tell us how to heal from all the times we left birthday parties early, or begged the server to bring more bread so we could keep him occupied, or exchanged weary glances with our spouses at the end of a long night.

There is only us—me, and you. 

We are the experts. 

We know how to come back from the depths of despair, brush our hair into a ponytail, and walk out the door. 

We know how to do this, whether we realize it or not.

We are a part of something bigger than ourselves. 

At this time, we’ve been wishing for a crystal ball to see what might happen next.  

We thought we needed it, as we lived through the longest days and poured milk into cups and smiled at strangers in the grocery store and attempted to explain our misunderstood children.

We wanted it, as we endured the sting of one thousand paper cuts.

The thing is, while we watched and waited and hoped for a glimpse into the future, we built a family. 

We built acceptance.

Unity.

Hope. 

We are raising children with autism.

It is nothing and everything we ever imagined it could be.