A few weeks ago I read an issue of People Magazine that featured one of the Real Housewives of New Jersey and her newly-diagnosed autistic son. The headline bleated something like, “Jersey Housewife Fights to Save Her Son!” When I read this, I felt a surge of outrage.
Save? Save?
After a moment, my sense of indignation subsided, and I thought to myself, “Oh, I remember those days.” I remember the days of thinking we had to somehow get Jack to recover from his autism, to heal and to change, to discharge his diagnosis like a snake shedding his skin, leaving us with a beautiful, bright-eyed boy who made eye contact and loved birthday parties.
Now I know better.
My next thought was, “I should write her a letter, telling her to relax, not to worry, it’s all going to work out.” Luckily before I actually sat myself down to pen such a note, I realized a housewife in New Jersey could probably care less what a housewife in New Hampshire has to say about her situation.
But I thought about what I wished someone had told me when Jack was first diagnosed, what I would’ve liked to know. And so I decided instead to write a letter to myself, on the day two-year old Jack was diagnosed by our developmental pediatrician.
November 3, 2006
Dear Self,
Today you received Jack’s official diagnosis of autism. And although you expected it all along, 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 very 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, until the beautiful moment when the autism and the boy combine together and you fiercely love them both.
Slowly, you’re going to see him 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?” is eventually going to 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 very 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. But you will always wake in the morning with new resolve and determination, because deep down you know he needs your strength.
You’re going to question your decision to continue working and sending him to daycare three days a week. Don’t. The time you spend away from him will fuel your time together; it is essential to have a mental and emotional break. Otherwise autism will consume you altogether.
In the summer of 2007 you’ll spend most of your meals chasing him around the kitchen and planting him back in his chair, over and over and over again. You’ll wonder if it’s worth it. I assure you it is; by the time he’s six Jack will be a pleasure at the dinner table.
At times you are going to marvel at his progress, his giant leaps in communication and social behavior. And 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.
You are going to meet some extraordinary people in the next few years, and your idea of a hero is going to change dramatically. A hero is going to be a bubbly blonde preschool teacher who patiently coaxes sentences from Jack lips, and a rail-thin painter from Texas who good-naturedly lets your son play country music on his radio while he paints the front porch. It will be a man who sits beside his dog in a hotel lobby and ever so gently persuades Jack to come closer, closer, closer Jack we’re waiting for you, until Jack reaches out a tentative hand and breaks down a phobia with a quick stroke of soft gray fur.
Your biggest hero will be the dark-haired man you married.
You will find new ways to channel your stress, things like running and writing and yoga. Maybe you’ll even run a marathon. In learning to manage the endless demands of autism and a family, you will also learn to take care of yourself.
He’s going to latch onto subjects, things like cars and license plates and seemingly random dates. But as you continue to open your own mind to autism, you’ll start to understand the meaning behind it all for him. And so it will be meaningful to you, too.
In the spring of 2011 you are going to watch, horrified, as Jack is gripped by anxiety. He is going to stop smiling and live in unending fear of ordinary things. For two months he will never laugh. It will be your most trying time as a mother, and each day you’ll feel fragile, like you can’t hold yourself and him together for one more minute. But you will find solutions to ease his distress, and he will return to you.
He will teach you to see days as colors.
Right now you’re worried how Jack’s diagnosis is going to alter the dynamic with his two brothers. Please trust me that the relationship between these three boys is going to blossom into something extraordinary. You are all going to change for the better because of autism.
And although you’ll start to understand that you can’t save Jack, you will never, ever give up on this dazzling boy. And here’s the best secret of all: at some point you’re going to realize you’re glad he has autism. Not glad for him; certainly his life would be easier without it. But glad for you, glad you are privy to the miracle of his extraordinary mind.
He’s eight now, and 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.
Love,
Me
P.S. It’s a girl.
Carrie Cariello lives in New Hampshire with her husband and five children. You can read her weekly blog and learn more about her online at www.WhatColorIsMonday.com.
