Old Autism Mama

If you are reading this, there is a good chance someone you know has autism. 

Hi.

My name is Carrie.

I have five kids, and my second son, Jack, has autism. 

He was diagnosed when he was eighteen months old. I was a young mother with a three-year old, and a one-year old, and a tender new baby on the way. I had absolutely no idea what I was doing.

The world stood still when the doctor said the words Autism Spectrum Disorder. That’s the only way I can describe it. The world stood still even though I expected it, but I hoped against hope maybe it was something else. 

Jack is sixteen now. I am an old mama with four boys and a tender daughter. I’ve seen things. I’ve heard things. Nothing surprises me anymore.

Don’t get me wrong, I still know next to nothing, but I’ve been to 5,382 IEP meetings and I know how to scout a room for possible exits in case he yells F%@# at the top of his lungs and I know I was foolish to ever think autism is something he would shed, or outgrow.

A lot of people ask me about how I told Jack about his diagnosis. Like most things when it comes to the spectrum, there is no guidebook, or timeline for this.

There were no workshops. I couldn’t find a pamphlet. The doctors shrugged their shoulders and smiled kindly whenever I asked. 

When should I tell him he has autism?

I mean, how was I supposed to explain to Jack that he had a diagnosis and there is no cure and he is different but he is good and whole and right but at the same time, life will be hard and he’ll probably never drive a car.

How was I going to tell him that anxiety is autism’s co-pilot, and together, they affect everything from his cognitive flexibility to his sleeping patterns?

I could figure it out. So I did what I always do when I can’t figure something out. I did Nothing. 

I went about life with my son and his autism and his preschool and his meltdowns.

I sliced bananas into teeny-tiny pieces and begged him to try a bite. 

Night after night, I took his hand and walked him down the hallway back to bed.

Life picked up speed the way it often does, and we journeyed through elementary school, IEP meetings, family dinners, more meltdowns, sleepless nights, small smiles, steps of progress, and tiny setbacks. 

Then one day, I turned forty. 

I don’t mean that in the before I knew it, I was forty kind of way. 

I mean it in the in the literal sense. I turned forty, and I had a few cocktails to celebrate this milestone, and the following morning I stood in the kitchen feeling slightly nauseated while I waited for the coffee to brew.

I turned around and Jack was standing there. I never heard him come in the room. That’s the thing about this boy—he is either filling up the house with noise and stomping, or he is as stealth as a cat.

For do I. Have autism.

I waited for a second. 

Yes, buddy. Yes, you do.

He turned around and walked up the stairs. In the distance, I heard Earth, Wind, and Fire start up on the CD player. 

That was it. That was the extent of the whole conversation. 

Except it wasn’t.

It was simply the opening act, if you will. It was the first song in a symphony of discovery—a few notes of opportunity.

See, my husband and I didn’t have to mouth the words to one another anymore. We didn’t have to keep a secret. 

I mean, it’s not like we kept it a secret to our family, or the teachers, or neighbors. 

We kept it a secret from our son.

But once he knew, we made the decision to weave autism into our family’s tapestry. 

We could tell him autism was as much a part of him as the freckle on his leg. We could rejoice in his memory for dates, and celebrate his ability to name the make and model of every car he’s ever seen.

We could let him be himself. 

Only then, were we able to live out loud within the walls of our very home. And this is a most beautiful thing. 

It’s hard to say when the right time is, mama. You’ll just know when you know.

That’s a terribly lame answer, I get it. It is vague, and at best, unhelpful. But it’s true. Trust yourself. Trust your instinct.

I guess I would say worry less about when, and think more about how things could change after—after the diagnosis is revealed and the truth surrounds you.

In the meantime, remember, you are doing life exactly and perfectly right.

We may not have pamphlets or workshops, but we always have each other. 

Love you always,

Carrie

Written by, Carrie Cariello

Carrie Cariello is the author of What Color Is Monday, How Autism Changed One Family for the Better, and Someone I’m With Has Autism. She lives in Southern New Hampshire with her husband, Joe, and their five children. 

Carrie is a contributor to the Huffington Post, TODAY Parents, the TODAY Show, Parents.com. She has been interviewed by NBC Nightly News, and also has a TEDx talk.

She speaks regularly about autism, marriage, and motherhood, and writes a weekly blog at www.carriecariello.com. One of her essays, “I Know What Causes Autism,” was featured as one of the Huffington Post’s best of 2015, and her piece, “I Know Why He Has Autism,” was named one of the top blog posts of 2017 by the TODAY Show.

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