by Ron Suskind
Also by Ron Suskind
Confidence Men
The Way of the World
The One Percent Doctrine
The Price of Loyalty
A Hope in the Unseen
Copyright © 2014 Ron Suskind
Artwork in Sidekicks chapter © Owen Suskind
Cover design by Ellice M. Lee
Cover photographs of sky: © Andrew Ivanov/istock; © abzee/istock
Cover illustration of people: © whiteisthecolor/istock; © brett lamb/istock
Poor Unfortunate Souls (from Disney’s The Little Mermaid)
Music by Alan Menken, Words by Howard Ashman
© 1988 Wonderland Music Company, Inc. (BMI) / Walt Disney Music Company (ASCAP)
All Rights Reserved. Used With Permission.
Family (from Disney’s James And The Giant Peach)
Words and Music by Randy Newman
© 1996 Walt Disney Music Company (ASCAP)
All Rights Reserved. Used With Permission.
My Name Is James (from Disney’s James And The Giant Peach)
Words and Music by Randy Newman
© 1996 Walt Disney Music Company (ASCAP)
All Rights Reserved. Used With Permission.
Wherever The Trail May Lead (from Disney’s Home On The Range)
Words and Music by Alan Menken and Glenn Slater
© 2004 Walt Disney Music Company (ASCAP) / Wonderland Music Company, Inc. (BMI)
All Rights Reserved. Used With Permission.
Academy Award® and Oscar® are registered trademarks of the Academy of Motion Picture Arts and Sciences.
All rights reserved. Published by Kingswell. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without written permission from the publisher. For more information address Kingswell, 1101 Flower Street, Glendale, California 91201.
ISBN 978-1-4847-0878-1
Contents
Title Page
Also By Ron Suskind
Copyright
Dedication
Author's Note
Chapter One: Growing Backwards
Chapter Two: Bumping Into Walls
Chapter Three: In Character
Chapter Four: Musical Chairs
Chapter Five: The Protekter of Sidekicks
Chapter Six: A Journey Song
Chapter Seven: Magic Formulas
Chapter Eight: Luck From Unluck
Chapter Nine: Blessings, Undisguised
Chapter Ten: The Movie Gods
Chapter Eleven: To Do It On His Own
Chapter Twelve: The Animated Life
Sidekicks
Photos
Acknowledgments
About the Author
To our son, Walt,
a real life hero
As you will learn in this book, my son Owen relied heavily on turning dialogue and song lyrics from Disney animated movies into tools to shape his identity and emotional growth.
I am grateful to The Walt Disney Company, which agreed to exert no influence whatsoever over the content of this book, even though it involves assessment and appraisal of their core line of business. The company has judiciously honored that agreement.
In this case, the independence of this work is also a matter of mutual interest, in that Disney is in no way endorsing the use of its materials for any matters related to autism.
What follows is the story of one family’s experience across twenty years, and what we discovered.
There’s a videotape I have a problem with.
It’s of a toddler running through fallen leaves with a Nerf sword. The time code is OCTOBER 1993. The boy runs like kids do at that age, about two and a half, with a reckless, headlong wobble that will soon be gone. We know this because, by late in the image-drenched twentieth century, we know how things are supposed to look, and can read all manner of inference into the moving landscape, most of it spot-on. He’s a wide-eyed, curly-haired boy, clad in green cords and a brightly colored winter jacket; tree types and topography suggest the northeastern United States; the leafy yard is behind a smallish home, though the swing set is elaborate—grand and spanking new, a sign of young parents trying too hard. The kid is being chased by a boyish, dark-haired man who’s laughing and holding a small stick as he knee-slides into the leaves, prompting the boy to turn, smiling and ready to fight. As they cross swords, the man says, “He’s not a boy, he’s a flying devil!” in a passable imitation of Captain Hook from Disney’s Peter Pan.
That the man and boy are reciting dialogue from an animated movie made in 1953 bespeaks the ubiquity of the VCR, the then-latest step in the electronic capture of sound and image begun a century before by Thomas Edison with his first recording. Rather than traipsing to the movie theater, one could then watch movies countless times in a free feed. So they did. Disney began releasing classics, like Dumbo, The Jungle Book, and Peter Pan on video-cassettes; movies baby boomer parents once loved that they could buy and share, afresh, with their kids. It was a commercial bonanza that helps explain this artifact: a video of two people reciting from a video.
Now take these specifics to the universal. This appears, after all, to be a father and son playing the roughhouse games that tend to nimbly carry volumes of hidden emotions: the boy, with each step, grows into the hero of his fertile imagination; meanwhile, the dad, knowing, in some deep recess, that the boy will grow to someday replace him, considers the many creative ways to perish. All played out, effortlessly, as the boy offers his best, most elegant thrust and the man falls—as dead as the crunching leaves—before pulling the giggling child on top of him.
I’m the father in this nice if unremarkable little video. That’s my son. I’ve watched it a hundred times, as has my wife, until we couldn’t bear it anymore.
It’s a last sighting of him, captured mercilessly and forever on the magnetic tape.
A month later, the boy vanished.
Her name was Cornelia Kennedy—from a large Irish-Catholic clan in Connecticut—before we were married. She now uses Suskind. I’m her husband, Ron, a Jewish guy from Delaware. The older of our two sons, Walt—named after my father, who died when I was a kid—is now five. Our younger son, the boy with the foam sword, is Owen. The starter home with the leafy backyard is in Dedham, Massachusetts. I’ve spent three years in the Wall Street Journal’s Boston bureau. We’re bound for Washington, DC, where I’m to be a national affairs reporter for the paper. The video is shot the day before the moving van arrives, and we’re all still firmly ensconced in the land of normal. I never thought much about that word, how it’s one of those definitions by default, shaped not so much by what it is as what it’s not—a circle defined by everything outside of it.
Cornelia sees it first a few weeks after we get to Washington. She’s with him all day, every day.
Something’s terribly wrong.
Owen is unglued. He cries, runs about, stops, cries some more. When he pauses to catch his breath, he just seems to stare into space.
That is, when he isn’t staring at Cornelia with searching eyes. She cups his wet, red face in her hands and asks what’s wrong. It appears he can’t tell her. Owen has never been quite as chatty as his talkative older brother, but chatty enough—the usual going-on-three vocabulary of a few hundred words, there, at the ready, to make his needs known or express love, or even tell a little joke or story.
We have moved to a rented house in Georgetown and everything transpires within a flurry of ambient activity: boxes to unpack, a new school for Walt, and a new job in a large, noisy news bureau for his father. So the loss of speech isn’t noticed until Owen is down to a few words. A month af
ter the moving vans depart in November, Owen has but one word: juice.
Sometimes, though, he won’t drink what’s in the cup—a sippy cup. He graduated to a “big boy’s cup” nearly a year ago. But in Georgetown he’s spilling, as though he’s lost his bearings. He has. He’s whirling and weaving. So Cornelia holds him, as much as she can, sitting in the gliding chair, as her mind races across the months. Did something happen, something she missed?
It’s like reviewing clues to a kidnapping. There was that one time, on a trip to Southampton last August, when he cried inconsolably for much of a day, though he’d never been much of a crier—not ever. Then there was the day the moving van was being loaded in late October, when a close friend had taken the kids for the day and, dropping them off, told us Owen had slept the whole time. He still took naps, but half the day? Unpacking a box, Cornelia finds a video from that very day, moving day. The sun was setting and Walter led a tour of our half-empty house. He was gleeful. A big trip to Washington. His goldfish, Artie and Tyler, named after his two best buddies, were already in a sealed bowl, ready for the journey: “My fish are coming with us, too!” And then a glimpse of Owen, briefly on camera, saying softly, sleepily, “This is my crib and all my things.”
She finds another video in that same box—the Peter Pan sword fight. That night, she and I watch. It makes no sense. Look at the way he moves, the ease of his speech. We rewind, watch it again. And again, looking for clues.
Come mid-December, Cornelia finds herself lying with Owen in his lower bunk, Walt fast asleep up top. A small lit tank hums on the bookcase, where Artie and Tyler swim silently through bubbles. It’s three A.M. Owen is rolling side to side, mumbling nonsense. Cornelia holds him as tightly as she can, to calm him down. In the dark night of desperation she now prays, whispering through tears to her baby, hoping God can hear: “Please help us. Whatever is going on I’m going to love you so much that I’ll love it out of you. I’ll keep holding you until all this is over.”
The holidays are approaching—there are gifts to buy and Washington is alive with events, the season of giving.
It should be a time of great expectations. On the surface, it seems to be all coming together, our life plan, years in the making. Cornelia and I had become friends after college, running a political campaign. She read my law school application, sitting on my desk, and told me it didn’t sound much like I wanted to go to law school—which I didn’t—but that it was well crafted and I should consider being a writer. She already was one, a youthful prodigy, and I immediately liked the idea. Before my father died of cancer at forty-six, he wrote a letter to my older brother and me imploring us to do “something worthwhile” with our lives. Journalism seemed to fit, opposing authority, searching for bits of truth, building a readership. Our candidate lost, but we became a couple, with her landing a job in New York as a reporter at People magazine and me off to Columbia University Graduate School of Journalism, followed by two years as a news clerk at The New York Times, while she moved up as a New York magazine editor; a year and a half reporting at the St. Petersburg (Florida) Times, where we married; then the editorship of a small business magazine in Boston and, in 1990, a slot at the Wall Street Journal’s New England bureau, a stone’s throw from Boston’s Old South Meeting House. I’d been crafting stories since I could barely talk—at the behest of my fiercely prideful Brooklyn-bred mother—and even turned them into stand-up routines during the difficult years after my father’s death. But I was learning, year by year, to write them, long form, for the paper’s signature front page. I was transferred to Washington to do that full-time—a dream job.
So in the evenings we try to focus on all the positives—new friends, deals on used furniture for our rented three-story Federal-style row house, neighborhoods where we might someday buy a home—before Cornelia reluctantly mentions a story from her day, some troubling thing Owen’s done. “Everything will be all right,” I say before trying out some plausible explanation: Owen is experiencing some sort of distress, maybe gastric, maybe, even, some hearing loss—and we’ll get to the bottom of it.
“No kid loses what they’ve already attained. You don’t grow backwards.”
The pediatrician asks to see our son for a moment, by himself. He tells us to sit in the waiting room. We’re extraneous. He wants to see how Owen interacts with a stranger, without us there. Because kids are trusting little people, they tend to look at strangers. They’re curious. They suck in information like small vacuum cleaners. They make eye contact and express themselves. At least, that’s what they’re supposed to do.
After a few minutes, the doctor calls us into his office. These things aren’t happening. We say, yes, we know, that’s why we’re here. Cornelia briefly describes what she’s been seeing, the nature of our worries, how our lives have been upended.
He listens. “If something is causing this much of a disruption in the life of the family,” he says, “then it is definitely a problem.” When pediatricians aren’t sure what they’re seeing, especially with small children, they default to “mother concern.”
He says he wants to take a blood sample for two genetic tests. One is for fragile X syndrome (a neurological condition, we find out later, with a detectable genetic marker and devastating outcomes). The other test is for Tay-Sachs. I know what that one is: a disease that causes mental and physical decline in babies and usually kills them by the age of four. It’s especially prevalent in Jews of Eastern European descent. That’d be me. This is something you learn about in Hebrew school, along with the Holocaust. And then he refers us to a center—a place in Rockville, Maryland—that might be more helpful.
By February, we’re sitting in a very different kind of waiting room, inside the Reginald S. Lourie Center for Infants and Young Children. It’s attached to a playroom, visible through a one-way mirror. Inside are large, multicolored blocks, swings, and mats for children to play with…while they are being observed.
We’re shown to an office where a tall, severe-looking dark-haired woman waits. She greets Owen, whose hand Cornelia is holding with the firmest possible resolve. In her office where she talks to us are more items to play with. Owen ignores them. Minutes pass. Then she has him walk down that long hall, from me to Cornelia. Letting him go, I want to say, “Walk nice and straight, like back in Dedham, just this once.” He doesn’t. He’s moving his arms, veering, catching himself, a zigzag, like someone running with their eyes closed. Cornelia scoops him up. Then we return to the woman’s office. “It appears he has a pervasive developmental disorder, affecting most of the traditional areas of development,” she says, and, “It’s clear in his gait, among other things.” She continues to talk in a removed, antiseptic way, barely looking at Owen, sitting on the floor, fussing with his fingers. We’re not really present at this point. Cornelia and I both are somewhere else, floating off, looking down at the young couple frozen in their chairs, nodding every few seconds, next to a child who’s intently studying his hands. Which is why I’m not sure precisely what point the doctor was making when she said the word “autism.”
Denial is a powerful force. Years later, a close friend’s father, an old psychiatrist, said something wise to me: “Respect denial. It’s there for a reason: a way we cope with what we cannot face.” At thirty-four, I didn’t respect it; didn’t even recognize it.
Driving home, Cornelia and I sit silently, while Owen thrashes behind us in his car seat. There is no way that woman is right. We know about autism what most people do in this time period. We saw Rain Man, like everyone else in America. Our son is not Raymond Babbitt, that guy Dustin Hoffman played. No way in hell.
A month later, we find a new doctor: a young developmental pediatrician in a booming Bethesda practice who looks uncannily like Cornelia’s longtime high school friend—a guy I befriended in college, who first introduced us. This feels much better.
Dr. Alan Rosenblatt takes Owen on his lap and says, ever so softly, “Hey there, buddy.” This time, Owen looks back.
They do a few exercises—touching fingers, watching, together, as the doctor moved his hands—and then they get down on the rug. Owen seems comfortable. They build little houses using blocks, Rosenblatt starting one, seeing if Owen adds to it.
He doesn’t. There isn’t much interaction. Owen gets up and begins to wander. Rosenblatt calls his name. And then Owen crawls under a chair and glances back at the doctor with a “come and get me” look—a brief expression, there and then gone—beckoning a chase. Rosenblatt jots something on his clipboard.
Back in his chair, he says, “I’m afraid that Owen has what we’re nowadays calling pervasive developmental disorder, or PDD, with the addition of NOS, for ‘not otherwise specified.’” That means Owen has some “autistic-like behaviors” but also others—like that “let’s play” look—that don’t fit the current definitions of classic autism.
He goes through a regimen for Owen that he feels we should start immediately. Intensive speech and language therapy, occupational therapy, play therapy, and the immediate hunt for an appropriate school for the coming fall, for which he has some suggestions. “Early intervention,” he says, “is crucial.” He adds, “Families who have religion or some faith community in their lives tend to do a bit better,” which chills us both—that catastrophe awaits—but is something Cornelia, raised Catholic, will soon draw strength from.
That Owen was not labeled “autistic” is a relief, as is Rosenblatt’s characterization of Owen’s problems as a “delay.” We’ll learn more later about the connotative cover these terms offer us. The important effect: it keeps us from running out of the office and driving home feeling like we’ve both just had our arms and legs cut off.
We make small talk with Rosenblatt walking toward the parking lot that day in April and get a bonus in building our defenses. We mention our wonderful pediatrician in Boston, a Harvard doctor named Bob Michaels. Rosenblatt does a double take. From Pittsburgh? Yes, we say excitedly—raised in Pittsburgh. “Do I know Bob Michaels? His father was my pediatrician. A great one. He was a major reason I became a pediatrician!”
