The Rules Have Changed

Listen, I like rules. I like order. I like a clean kitchen at night and I make my bed every morning.

Hi. My name is Carrie. I live in New Hampshire with my husband Joe, our five kids, and a silly dog named Wolfie.

Our second son, Jack, has autism.

Autism is the conversation that starts long before I open my mouth to speak.

It is the glance we exchange when you notice him jumping. 

It is the small smile across the produce aisle when he fills the cart with avocados.

It is my hands upon his to stop him from picking his cuticles. 

Autism, well, it changed the rules.

It changed the way I think, and hear, and speak.

I sit in the doctor’s office and I think about how I will need to be involved in my son’s life for the rest of my own.

I hear statistics, and numbers, and data, and I work very hard to remember the boy before the research. 

I speak my truth and our story, and I say the stuff I think needs to be said. I do this because I am an advocate now.

Oh, I didn’t plan to be an advocate! No siree, I was going to be a regular old mom with a few regular kids who played baseball and stuff.

That’s autism for you. It’s always switching things up according to it’s own agenda. 

I hate it.

I love it.

I know, I know. You’re going to say it’s time to make peace with it. You’re going to waggle a stern finger in my direction and say, “Carrie, it has been sixteen years now, and it is time to move past all of this.”

And I have! I have made peace with a diagnosed child. I have made peace with the way he talks to himself all the time, and the medication he takes for anxiety, and how he says exactly what is on his mind.

Until I haven’t. And that’s just the way it goes inside the heartbeat of an autism mama’s heart. 

In our family, we decided the kids can have a phone once they get their driver’s license.

He is sixteen.

He isn’t driving.

He would love a phone.

Now what?

Giving him a phone would be like handing him a bomb. He’s not emotionally ready for it. 

But we said sixteen and he is sixteen and he may never drive and I don’t know what the answer is.

Does he know what has been stolen from him? The way autism ripped the proverbial rug out from underneath his feet?

I do. I know.

And at times, it enrages me. I can’t help it. I am trying to be better.

I feel this rage more and more frequently now. Still, I try for the betterness.

I mean, when he was little, what did autism take from us? Mommy and Me classes? Play dates? 

Now, the theft is larger. It encapsulates concepts and ideas he cannot quite name for himself.

He doesn’t want for much, that’s the thing. He wants a nice dinner, some ice cream before bed, and maybe the independence to drive the store once in a while so he can pick up more flour to bake cookies.

I can give him the nice dinner, and the ice cream. But the independence thing might take some time. 

The other day we were eating outside at this burger place in a nearby town. Jack got up from his chair abruptly and I thought he needed to stim and jump so I didn’t think anything of it. I just kept eating my burger.

Then my daughter Rose said, “Look, Mom. Jack is by the street.” Her voice held a quiet panic.

And I looked up to see him standing between the cars parked parallel. He is so tall. 

So I jumped up from my seat and I jumped over the railing and got to him and he was standing there, looking at the traffic, trying to decide when to cross.

He was worried I forgot to lock the car. That’s what this boy of mine does. He worries. 

Autism changed the rules. It changed the rules and my 16-year old son can’t cross street on his own and I will have to arrange his medical care forever and sometimes I am overwhelmed, and a teensy bit sad. 

It changed the rules and now I have a boy who worries, and picks his cuticles until they bleed thin rivers of red.

I will not break beneath this. Can you hear me? Can you see me?

I will not break beneath the diagnosis or the anxiety or the sadness. 

Goodness, I want to—I picture my tall boy and his silhouette against the evening sky with cars passing by and I want to go right out of my mind with the unfairness of it all. 

If I break, he may break. He may fill himself with doubt and I can’t have that. 

I have to push him, even on the days I am tired and over it and want to just eat my burger with lots of ketchup.

I know he will do great things. 

He may not do big things, but great things do not have to be big. That’s probably the best part. Great things can be quiet, and soft. Still, they require lots and lots of courage. 

He is so strong.

He has a well of courage that far exceeds my own and I will not break before this altar of autism, so help me.

I love him fiercely.

Autism changed the rules.

This is good, and hard, and ordinary.

If you let it, autism will change the way you think, and hear, and speak, and say.

You will never meet anyone like him.

It is okay.

It will be okay. 

As for peace? Well, peace is a little like holding water in my hands. Sometimes I cup the cool stream in my upturned palms, and I drink enough to cool the fire within my spirit.

He makes the best guacamole with all those avocados.