A Letter to Jack

Dear Jack,

Here’s the thing. You have autism.

I have been waiting years for this conversation. I have so much to ask you and tell you. I know—at nine years old—you aren’t ready to answer my questions, nor will you understand my explanations, but I figured it was best to get it all down on paper for the day when you are.

Because really, how often does a mother get to talk to her son about his diagnosis? To retrace the steps back to you took forever to talk and we were so scared.

At this point you know the basics: you were officially diagnosed as a toddler, but we believe you’ve always had it and you probably always will. It is not a sickness or a disease, and as far as I know, there is no real cure. I don’t know if you’ll get married, but frankly some days I’m not sure we’ll marry any of you off.

But maybe you are wondering about other details to this story, like at what point I stopped saying things like why me and I wish he was normal and this is so hard and decided to just go with this whole Autism Spectrum Disorder thing. When I discovered for the first time that you were not just a boy wrapped in a diagnosis, but a child with great potential and promise and sunshine.

I’ll tell you exactly when.

You were just shy of three and had very few words, so I enrolled you in a sign language class at our local YMCA to encourage some communication. It was a nightmare. Every week you zoomed and stimmed and catapulted through the room, oblivious to the rest of the kids or the teacher.

One afternoon I buckled you into your car seat, and got in the front seat. I was aggravated and sweaty from chasing you around for forty-five minutes. Just before pulling out, I looked in the rearview mirror and saw you signing “Mother” over and over and over; tapping your chubby thumb to your chin almost frantically. And I thought he is in there. With that one gesture, a switch flipped.

You are the bravest person I know.

Every day you go into a world that in many ways is not made for you—a world with bright lights and static and dogs—wearing nothing but a long-sleeved t-shirt and khaki pants for armor. Determined as all get-out, you march up to people and demand to know what car they drive, if they’ve seen Justin Bieber in concert, do they know Montgomery is the capital of Alabama.

Without even knowing it, you change people.

Last week your fourth grade class took a test. You talked a lot about this test and told us how it was on something called “land forms”. But at the last minute we all decided it would be better if you took your test in the room down the hall, separate from everyone else.

When you got home you sat at the kitchen counter, twisting the strap to your red backpack in your fingers and you cried about that test, about going to another room. Through your tears you said, “I am dumb today.”

And I thought my heart might break into a thousand million pieces.

How to explain the reasons why your work is changed, modified? How to tell you that you are anything but dumb, that your mind just works differently, that you would be distracted by the sliding chairs and clearing throats and scratching pencils of the regular classroom at test time. That you might start shouting out the answers instead of quietly writing in your loopy cursive.

Not dumb. So not dumb.

One time I wrote about how I pictured the discovery of your diagnosis to be like a balloon leaking air and floating to the floor. But I think I’ve changed my mind. Now I picture a colorful blanket knit out of soft yarn. And every time you learn something new about yourself and your autism, it’s like you are tugging on a loose thread, until the whole blanket eventually unravels into a tangled pile.

You are very literal. I tried to look up the definition of the word literal to give you the best explanation, but Merriam Webster just said the use of the ordinary word.  Here’s a better way to explain it: this weekend we had a lot of company for Thanksgiving.  I asked you to sit next to Uncle Jack for a picture, and I joked, “We can call it Jack Squared!”  And you said, “We are not squares. We are people.”

Literal.

Sometimes you disappear inside of yourself for seconds, minutes at a time. Your eyes go blank and your face goes slack. This seems to be your response to what’s known as flooding. When you are overwhelmed by the smell of chicken cooking and sound of Henry bellowing and sight of the sun bouncing off the table, you cope the best way you know how. You retreat.

What do you think about when you disappear that way? What is going on in that head of yours?

A few weeks ago we were having lunch together and I said, “Can I ask you a few questions about autism?”  Your face turned dark, cloudy. “Okay. Just one.”

And I scrambled to come up with only one, feeling pressure to ask quickly before you shut down on me, lost interest and wandered away. How does your medicine make you feel?  What is it about toilets lately? How do you remember so many birthdays? Do you like church?

But I watched you take a big bite of your grilled cheese sandwich and chew thoughtfully, your mind already slipping away from our conversation like a fish wriggling through dark waters. I lost my nerve, and just said, “Um, how’s your lunch?”

“Yes. Good.”

Maybe the thing I want to know the most is what your stimming—or zoomies—feel like.  I watch you bounce around the room as though someone else is controlling your body, jerking your arms and limbs around like you are a marionette on an invisible thread. Is this uncomfortable? Because it looks it.

Do you love me?

I know, that is probably the weirdest question a mother has ever asked her son, but every now and again I wonder. I know you love blue raspberry Italian ice and fast roller coasters and Lady Gaga. I know you like me and you need me and you seem happy when we’re together, but you just never say it.

You know what? It doesn’t matter.

It’s important to me that you understand your diagnosis is not an excuse. It is not a reason to always be first in line or stand on the bus when everyone is sitting or chew with your mouth open at dinner. You will have to work harder for some things than other people, that is true.  But we still expect you to be the very best Jack you can be; to finish your homework and play nicely with Henry and memorize your prayers.

I know you can do it.

Last week you asked if everyone knows you have autism, and I answered “I don’t think so!  Why would you ask that?”  And then—with your face screwed in consternation—you said, “Because!  It was in the NEWSPAPER!”

And then I felt bad. My heart sank. Because it was in the newspaper; a big, bold headline about the book and our family and you. Your autism.

I hope you can forgive me for revealing it that way.

Because it is our story—your story—but it’s also a lot of people’s story. And I want those people to know that some days are ridiculously long and dark and hard. Some days I still cry out of frustration and some nights I wake up in a sweat, worried you’ll be bullied in middle school or have your heart broken or need to keep taking tests in a room down the hall.

But some days are beautiful and shiny, and your autism feels like some strange, unexpected gift that took me a long time to unwrap and appreciate.

How the shiny and the dark combine to make a nine-year old boy with crazy long legs and a surprise smile. How maybe right now this all feels like an unraveled blanket, a heap of loose threads with no connection or meaning. But together—with enough sweat and tears and giggles and grilled cheese sandwiches–we can weave the yarn into a glorious tapestry.

Come to think of it, maybe I don’t care so much if a lot of people know this about autism or not.

As long as you do.

Love,

Mom

If you’d like to learn more about the Cariello family’s journey with autism and five kids and Fourth of July parades and cookies with milk, check out the book, available in paperback and digital versions on Amazon, Barnes & Noble.com. and local bookstores.