Parents

Dear Autism: Mom's letter shares her anguish, hope

I almost lost my marriage because of you.

It was the year my son named Jack was born, and you were born right along with him.

At first, we had no idea. He was just a squirming chubby baby who didn’t sleep too well and hated to be swaddled and cried a little more than we expected.

Slowly, you made your presence known.

The sleep got worse.

The cries got louder.

The quiet got quieter.

He was sick all the time; reflux and ear infections and a deep, barking cough.

Then eighteen months later, on a gray day in early November, an official diagnosis of autism spectrum disorder.

Courtesy of Carrie Cariello
The Cariello siblings. Jack, wearing green sweatshirt second from right, was diagnosed with autism at 18 months old.

I charged full-steam ahead. I wanted to read about you and research your symptoms and figure out the best plan for speech and occupational therapy and maybe some sign language and then integrated preschool and if we had time we should do music class because everyone knows music is great for kids who don’t talk a lot.

My husband, Joe, took the wait-and-see approach. He wanted to slow down, and understand you. He wanted to be thorough before we jumped into anything.

I was right, he was wrong. He was right, I was wrong.

I was frantic.

He was methodical.

I was raw.

He was angry.

Because of you, we were both lost.

Courtesy of Carrie Cariello
Carrie Cariello has written two books about autism.

Oh sure, we never fought about you specifically. Instead, we fought over who got more sleep and who spent more money and who did more housework; all while a wolf knocked quietly at the door—an interloper in the dark of the night.

Inside every marriage is a secret language, a private code of nicknames and jokes and memories. Some days are full of a thousand tiny hurts, followed by a million small recoveries.

Once you bared your long, yellow teeth in our house, the jokes ebbed. Our nicknames faded, and our attempts at recovery were dwarfed by the hurt. Most of our spousal dramas played out on our big tan couch, with one of us rocking and patting a fussing Jack.

I said I would look into—

Why can’t you just calm down?

Calm down? Calm down? Something is really wrong with him. You know it’s true.

I always hated that couch.

Because of you, our young marital ground was sliding beneath us, and separately we each battled the nagging feeling that the landscape of our little family was shifting for good. We were a statistic, a number, a plot line on the spectrum’s sloping bell curve.

Ever since November 3, 2006, you and I have been like two boxers in a ring, circling and jabbing, trying to gain whatever ground we can against each other.

We are brother and sister at the end of a long, hot car ride, poking and needling and annoying and griping.

We are the quintessential cat-and-mouse, and we take our turns chasing and hiding, hiding and chasing.

I am always watching you to see what move you’ll make next.

And like a stray cat in the dark, you are always waiting for me to give up or get tired.

I will never get tired.

Well, that’s not exactly true. Some days I am very, very tired. I am tired because you wake him up at the crack of dawn and told him that he has to make pancakes because he made pancakes on this exact day two years ago except this year is a Leap Year so it was different but still he should make them.

But I will never give up. I vow to be as tenacious as you are determined, as resourceful as you are wily, as steadfast as you are slippery.

Because of you, I came this close—thumb and forefinger closeto crashing my minivan into an oil truck, after you made 6-year old Jack shriek and scream when he saw an orange cone because he was afraid of anything that was orange that year.

Because of you, I missed the first half of my oldest son’s fourth grade play, when you whispered in 9-year old Jack’s ear that the auditorium, with its colorful stage and crowded audience, was too loud, too bright, too much.

Because of you, he feels threatened by every single thing around him—a loud noise in the kitchen, or a street light that suddenly goes out, or a different item on the lunch menu. He spends his day in a perpetual state of fight-or-flight, trying to protect himself from an invisible, nameless attack.

Because of you, 11-year old Jack has the hardest time with language, and he communicates with the world around him in his very own dialect. Sometimes it is funny, sometimes it is frustrating, but always it is fascinating.

And how would you like your burger? Medium?

NO! I want it LARGE! I want a LARGE BURGER.

Because of you, I have to watch his inner torment over something as simple as choosing the right clothes to wear; his ceaseless longing to fit in with those around him balanced precariously against his need for order and routine.

Everyone. All the boys. They wear shorts. But I will be too cold. To wear shorts. I think for my turtleneck.

For months now, you have trapped him inside of his own private blizzard—you have cloaked him in fury and tantrums, curse words and depression. He is sad one minute, mad the next.

My son is hurting and I can’t reach him and this is all because of you.

Although his diagnosis is clear, his future is as hazy as a morning in springtime. A high school diploma, a driver’s license, and an apartment of his own—they all dangle just above his head, like lightbulbs burning in a chandelier.

Because of you.

Because of you I had to call our local police department. I worry he will run away from me one day into the street or through the woods or out of the car, and I will need their help to find him.

I want them to know about you—about the wolf that shadows my child and clutches him tightly, even as he thrashes and squirms and begs for release.

Because of you, I worry all the time.

I worry about the f-word in the line at Chipotle because they ran out of guacamole and he really, really wanted guacamole and I worry my about my other four kids and whether their childhood will always be overshadowed by the phrase your brother has autism and I worry he eats too many pancakes.

I worry he spends too much time on the computer and what will happen if I die and whether or not I should make him brush his teeth better.

I worry one day my marriage will buckle beneath this tremendous weight, that we are just one meltdown away from complete chaos, because parenting this boy together is so hard.

I want to hate you, autism, but like a child picking petals from a flower, I vacillate between hate and love, loathing and tenderness.

To hate you would be to hate a fundamental piece of my Jack-a-boo, and that is something I can never ever do, no matter which way the silky petals scatter in the wind.

I know you love this boy almost as much as I do. In some ethereal way, I know you chose him—you chose me, and us.

Because if you, I know the kindness of strangers and the devotion of teachers.

Because of you, my children are flexible, and tolerant, and tender, and kind.

Mom, it’s no big deal. Nothing really happened in the beginning of the play anyway.

Carrie Cariello
Says Carrie Cariello, pictured here with her husband Joe: "I worry one day my marriage will buckle beneath this tremendous weight, that we are just one meltdown away from complete chaos, because parenting this boy together is so hard."

Because of you, this dark-haired man and I found one another again. In the midst of diapers and speech therapy, doctor’s visits and long, sleepless nights, we rediscovered our own private language.

He said he wanted a large burger, it was so cute.

He decided on a short-sleeved shirt with cargo pants.

I can’t believe you got him in here before the second act, headphones was a good idea.

So today, autism, I’m going to hang up my gloves and stop chasing you. I’m going to try to understand you, and give you the room you need to help this boy blossom.

I only ask one thing. Share him with me. I miss him.

Carrie Cariello, a mother of five from New Hampshire and the author of "What Color Is Monday?," writes a blog about her family's experiences with autism. Her son, Jack, 10, was diagnosed when he was 18 months old.

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