To the Me Who Thought I Could Fix My Son’s Autism


wcmnewcover The first chapter of the book I wrote is a letter to myself the day my son, Jack, was diagnosed with autism spectrum disorder. It’s everything I wish I knew about him and me and autism way back in November of 2006, when he was a chubby 18-month old who made me frantic because he wouldn’t talk or point or play or sleep.

I’d like to share a part of that letter with you today.

But before I share the letter, I have to give you the backstory. I have to tell you about the day he was diagnosed — a memory so intact, so perfect and whole and tender, it’s as though it happened last week instead of nine years ago.

For months, we’d been on the wait list for an appointment with one of Buffalo’s top developmental pediatricians. My husband, Joe, and I were shocked at how long it took to get into some of these places, and stupidly, we believed that by the time we actually did see a specialist, Jack would have outgrown all this stuff and be totally fine.

It didn’t exactly happen that way.

One chilly afternoon in the late fall, the doctor’s office called to say they could squeeze us in at the end of the day. I made arrangements for a neighbor to watch 2-year old Joey, and called Joe, who was busy with patients and unable to get away.

I buckled Jack into his car seat and raced downtown. After about 45 minutes of chasing him around the crowded waiting area, they announced our name, and we trooped back to a tiny, cramped exam room.

I mean, it was small. I’m fairly tall — about 5 foot, 9 inches, and I have big feet — and I felt like a giraffe sitting in one of the chairs positioned by the wall.

I was hot, and the waistband of my pants felt snug. I picked at the button irritably while Jack slumped against my leg. Ten minutes later, the doctor came with a chart in his hands. He had soft brown hair that sort of flopped over his forehead. He had on a white shirt with a tie.

He looked over the paperwork I’d sent — months and months worth of evaluations and tests and assessments that had scary words and phrases like auditory processing disorder and significant speech delay — and  started to ask me some questions quietly. He talked to me, but he kept his eyes on Jack, who was listlessly tracing the outline of a tile on the floor.

How much speech does he have now?

Well, he’s still not saying any words. He signs for more, and sometimes he kind of says up. But it sounds like uuh-uuuh.

How about Mama or Dada?

No.

Does he point?

No.

Does he turn when you call his name?

No.

Does he play any games like Peek-a-boo or Patty-cake?

No.

Any other concerns?

He doesn’t sleep well. He seems to have a hard time kind of managing certain foods, like he has trouble swallowing or something.

I see. Anything else?

Well, he never, um, looks at us. Or reaches for us. It’s hard to describe, but it’s like we don’t exist to him. He doesn’t seem to know who we are.

All at once, Jack got up from the floor and began to whirl around. He kept his head down but his arms were extended, like some kind of animated starfish. He stumbled and bumped his shin on the filing cabinet, and he started to shriek.

I called out to him. Jack, come to Mommy. Jack, are you OK?  But he didn’t move or look my way.

I got up and walked the three steps to where he stood, flapping and screaming. I tried to mold his body into mine and curl him against me, but he kept his limbs and torso as stiff as a board. The doctor watched, motionless, from his chair.

Does he ever come to you for comfort? If he’s hurt?

I shook my head. No.

I looked back at the kind man sitting in the room with us, and time stood still.

And in that space of maybe a fraction of a second, I think I knew. I knew it was no longer about eye contact and how many words he could say and whether or not he pointed his finger to show me a bird in the sky.

It was about a solitary little boy who was so remote and inaccessible and lost to me; he didn’t need my comfort when he was hurt.

He didn’t need me to kiss the boo-boo, or wipe away his tears, or murmur sssshhhh it’s all right, Jack, you’re OK into his small ear while I cradled his head against my shoulder.

I wish I could describe the way I felt in that second. Crouched over Jack, I felt a pain so white-hot, it was almost searing.

I longed for Joe.

I longed to nestle my face into his neck.

Because although I’m tall, Joe is taller, and his neck is the perfect place for me to grieve whatever it is I need to grieve: a miscarriage, a bad day at work, a little boy who will not say one blessed word.

But it was just me. Just me and my son.

I walked out of the doctor’s office and through the waiting room and back into the world, holding my sweet, silent, mysterious Jack’s hand.

And on that day, this is what I wished I’d known. For both of our sakes.

diagnosis-jack November 3, 2006

Dear Self,

Today you received Jack’s official diagnosis. You expected this news all along, but even so, you’re still reeling from the doctor’s softly-spoken words. You listened attentively to his hushed voice saying things like considerable delay and early intervention as Jack whirled and spun around the tiny exam room. At one point you started to sweat.

It’s been a long journey leading up to this day, a long road of when will he talk and why doesn’t he recognize me. A long two years of tantrums, heartache and the eerie quiet of a toddler who doesn’t speak. Months of watching your brown-haired boy through a two-way mirror as a variety of specialists tested his hearing, tested his language, tested the way he stacked multi-colored blocks.

Autism.

Right now, you’re thinking you can fix him, that he will outgrow this. But you can’t and he won’t.  Instead, both you and he will learn to coexist with it, and in the process you’ll discover how grateful you are to be privy to the miracle of his mind.

Slowly, steadily, you’re going to see Jack for everything he is rather than what he is not. The list of he’s not talking, when will he point, why doesn’t he play with others, will eventually be replaced with look at his smile, I love to hear his voice, tell me again, Jack, tell me everything you have to say tell me.

He will surprise you every single day.

In the meantime, I won’t lie. You have some long days ahead of you, days full of frustration, of intense outbursts, of whining. Days where you’ll go to bed at night hating yourself because you feel you haven’t done enough or haven’t done it right. But you will always wake in the morning with renewed resolve and determination because deep down you know he needs your strength.

At times you are going to marvel at his progress, his giant leaps in communication and social behavior. Then for a while, nothing. His development will level off and you’ll fight a rising panic that he’ll never move forward again. Don’t worry, like the steps on a staircase, his pattern will be to jump up and then stand still for a while.

He will teach you to see days as colors.

Jack’s going to latch onto subjects, things like cars and license plates and seemingly random dates. As you continue to open your own mind to autism, you’ll start to understand what it all means to him. And so it will be meaningful to you.

You’re also worried about how Jack’s autism will affect the dynamic with his siblings. Please trust me that the relationship between these children is going to blossom into something extraordinary. You are all going to change for the better because of him.

And although you’ll start to understand that you can’t save Jack, you will never, ever give up on this incredible boy. One day there will be a beautiful moment when the boy and the autism combine and you fiercely love them both.

I can’t wait for you to meet him.

Oh, and one more thing.  If you think today was crazy, you might want to brace yourself. Because tomorrow you’re going to find out you’re pregnant.

— Me

P.S. It’s a girl.

This post originally appeared on CarrieCariello.com.

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