Inside Her Head
Let me tell you something about an Autism Mama.
Her brain never stops—not for one single second.
All day long, it circles and loops and worries and wonders.
It is a flow chart of appointments, and therapies, and specialists, and schedules.
A veritable melting pot of hypothesis, and hope—optimism, and sorrow.
It moves very, very quickly, this brain of hers. Like a bird alighting upon sunlit branches, it moves from one thought or idea to another.
Dinner.
The latest research about gluten-free diets.
How to stop him from chewing his cuticles.
Often, she thinks about her her own mortality. She tells herself she cannot die.
Whether she wants to be or not, she is the family calendar, the weekly meal plan, and the social director.
At any given time, she can remember how much dish detergent is left beneath the sink, and if it’s time to order snow pants.
She remembers what kind of fabric his t-shirts need to be, and what kind will drive him crazy.
Inside her head is every failure, every mistake, every misguided attempt she’s ever made.
The month she insisted music class was good for him, even though he cried every week when they pulled up to the building.
The time she screamed because he spilled a whole glass of root beer on the brand-new rug and even as she was screaming, regret and shame surged up her throat like acid.
Or all the nights she was short with him because he came downstairs over and over again, asking about the wind chill factor, or fire drills.
And after he was finally settled and the house was quiet, she felt the deep pinch of guilt deep within her heart.
On any given day her brain feels full, and disorganized, and overwhelmed. She can’t keep up with it all. She is forgetting, she is slipping, she is trying.
But there is too much to remember.
There is too much to know.
Even as she sleeps, her thoughts refuse to slow. Dreams often invade her rest. She wakes fitfully in the early hours of dawn, thinking of the day ahead—what will set him off? Will he try eggs for breakfast? What if the grocery store is too crowded after speech therapy and she can’t bring him in, even though it’s her only time to pick up milk?
This is her brain, on autism. It feels frantic, and panicked, like a train coming off the tracks.
Sometimes she pictures it as a wonky mess of scribbled lines—something a child might draw with a blunt crayon. Blue heartache, the red rush of anger, black and white letters upon a stark piece of paper.
Autism Spectrum Disorder.
And yet, with perfect clarity, she can clear the noise and the words, and remember specific details, or dates.
His shoe size.
His favorite color.
His elementary school principal.
The curve of his face when he was an infant, or the brand of macaroni and cheese he cannot live without, or the time of day he was officially diagnosed.
It’s maddening the way she cannot stay in the here and now—how her thoughts wander from the past, to the present, and deep into the future.
Should she have done more ABA therapy when he was three?
Can he make it through the afternoon without a meltdown?
What will he do after high school ends?
The truth is, her mind may feel like a mess, but in fact it is a beautifully glorious space filled with memories, and appointments, and instinct.
It is powered by a sense of humanity, and kindness, and devotion.
Maybe you are wondering how I know all of this, about an Autism Mama’s brain.
I know, because it is also my brain.
It is my heart.
I screamed at him about the soda.
The whole time, I hated myself.
I am trying.
Onward.
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.
Interested in writing for Finding Cooper’s Voice? LEARN MORE
Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.
