May We Learn
Hi.
My name is Carrie.
I have five kids, a handsome husband, and the best dog in the whole entire world.
His name is Wolfie.
My dog, not my husband. My husband’s name is Joe.
We have four boys and one girl. Our second son, Jack, is diagnosed with autism.
He is sixteen years old. He has had autism his whole entire life. I do not believe there is a cure.
When I was young, I didn’t give a lot of thought to what kind of mother I might be. I didn’t picture it all, if I am being honest.
Now, here I stand. A mother.
I am not a great mother, but I believe I am a good mother.
I don’t like crafts, but we do bake cookies.
I hope most days, I hug more often than I yell.
I have been trying to teach this boy for sixteen years now.
We taught him to string two, then three words together to make a sentence.
We turned the pages of books to him and hoped he could one day read on his own.
When he was in the third grade, we discovered he pictures the days of the week as color. He asked me one afternoon what color Monday is, and then listed off the days and the colors like it was something he was born knowing. Who knows? Maybe it is.
George Floyd died on a Monday.
Our country is in shambles right now. It is literally burning down in flames while a virus persists upon its own pathological ruin.
Have you ever tried to explain the concept of a pandemic, police brutality, and racism to a boy with autism?
Me neither.
Just kidding. I’ve tried to explain it every day since the world shut down in March.
When it comes to my son Jack, some concepts are easier than others to explain. As for COVID-19, we told him there was a virus and it was making people sick, so in the interest of everyone’s safety, schools and stores and movie theaters were closing for a while.
If there’s anything this boy likes, it’s the idea of safety.
He started wearing rubber gloves around the house, and spraying so much Lysol, I had to hide the bottle.
Discrimination, rioting, and buildings set ablaze are a little more difficult.
The small boy who fidgeted next to us on the couch and listened to story after story about talking dinosaurs and bears in the woods can read now. That’s the thing. But instead of dinosaurs and bears, he reads articles online about current events.
But why. Was his knee. On his neck.
His questions force me to stop me every single time, for nothing more than their pureness.
At sixteen, he speaks in sentences—sure, they are abridged, and often abrupt, but they are fully composed thoughts created from thoughtfully chosen words.
He died. Now there are fires.
I am not sure how to tell him that when you push and push people to the point where they have nothing left to lose, this is the very moment we have lost what may never be salvaged.
Why is he black. But I am white.
For sixteen years I have worked to find the tenuous balance between autism’s gifts, and its intrinsic challenge.
Like a tightrope walker, I sway back and forth between meltdowns, and sleep-deprivations, and long meetings about education.
I have worked to understand the crushing anxiety, and a body always in motion.
I’ve come to learn that perhaps its greatest gift is the way autism strips life down to the bare essence. It removes all the nonsense, and the meaningless details, and reveals the truth. Time and time again, my son does this for me.
Yes, he thinks in color—butter yellow and deep purple and violent, fiery red. And yet, at the same time he is blind to the hues.
He did not decide. His color.
He did not decide. To die.
Monday is blue.
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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