Following Ezra Read online

  Table of Contents

  Title Page

  Copyright Page

  Dedication

  Epigraph

  CHAPTER ONE - He’s Gone

  CHAPTER TWO - A Different Mind

  CHAPTER THREE - Lots of Little Fears

  CHAPTER FOUR - The Boy Who Shouted

  CHAPTER FIVE - Finding My Son at the Zoo

  CHAPTER SIX - The Reader

  CHAPTER SEVEN - Gumby, Cheerios, and Red T-shirts

  CHAPTER EIGHT - Typing Lessons

  CHAPTER NINE - I Just Know

  CHAPTER TEN - Chasing Elmo

  CHAPTER ELEVEN - Is Your Dog Friendly?

  CHAPTER TWELVE - Right and Wrong, Death and God

  CHAPTER THIRTEEN - Three Questions

  CHAPTER FOURTEEN - Remembering the Future

  EPILOGUE

  Acknowledgements

  PRAISE FOR FOLLOWING EZRA

  “Following Ezra is a revelation. I could not put it down. Life rarely goes according to plan, and too often we try to control situations that are beyond our control. In this life-affirming book, Tom Fields-Meyer offers a rare gift: He teaches that the things we least plan for can become our greatest treasures. This inspiring memoir of a father raising (and being raised by) his autistic son is a great lesson about patience and the blessings that can come when we let our unique children lead us.”

  —Naomi Levy, author of To Begin Again and Hope Will Find You

  “A riveting account of raising one special boy, Following Ezra is a powerful story for parents of any child. This inspiring book shows us that seeing meaning and depth in our children’s idiosyncrasies is crucial to raising strong, secure, and resilient kids. Tom Fields-Meyer has written a beautiful, funny, tender book. I highly recommend it.”

  —Michael Gurian, New York Times bestselling author of

  The Wonder of Boys and Nurture the Nature

  “In a world with such narrow yet outsized definitions of success, this enchanting and profound book is a reminder that each child is made in God’s image. I was sad to reach the last page. I’ll miss following the exuberant Ezra.”

  —Wendy Mogel, PhD, author of The Blessing of a Skinned Knee

  and The Blessing of a B Minus

  “I look for love in books about children. I trust the parent who yields to wonder and celebrates the unexpected. I honor the writer who tells a family story with dignity, clarity, and grace. Love is the river that runs through this book. Dignity and grace light each page.”

  —Beth Kephart, National Book Award finalist

  for A Slant of Sun and author of Undercover

  “Anyone who is raising a child with special needs should read Following Ezra. It shows how warmth and humor—yes, humor—can help not just the child, but the family, more than most of us could ever imagine.”

  —James Patterson, New York Times bestselling author

  “Following Ezra is an unsentimental, beautifully written memoir about a boy whose limitations and gifts are as extraordinary as his impact on the reader’s life. Like Ezra himself, this book is by turns funny, painful, poignant, and scrupulously honest.”

  —David J. Wolpe, author of Why Faith Matters

  “When Tom Fields-Meyer’s son Ezra was diagnosed with autism, the author decided to forgo mourning for the child who might have been, and concentrate instead on the delightful kid he had. Following Ezra is at once a meticulous description of what it is to parent a child who has autism and a salute to the kid whose mind takes both of them to mysterious, profound, and silly places we socalled typical adults can scarcely imagine.”

  —Carolyn See, author of Making a Literary Life and

  grandmother of a child with autism

  “The moving, fascinating story of a father’s journey toward understanding and hope.”

  —Daniel Tammet, New York Times bestselling author of Born on a Blue Day

  “Following Ezra offers a moving testimony to the strength and breadth of the human spirit. Tom Fields-Meyer provides a tale that transcends the fears and challenges of raising his autistic son, and shares how Ezra teaches him to appreciate the beauty and depth of the world in surprising and unanticipated ways. In so doing, Fields-Meyer expands our humanity and demonstrates that love and connection are possible in ways we might not have imagined—if only we are open. I laughed and I cried as I read page after page of this poignant, powerful, inspiring, and gentle book.”

  —David Ellenson, president,

  Hebrew Union College–Jewish Institute of Religion

  “Following Ezra is a revealing and poignant memoir, told with deep reflection and insight. We feel the fear of the unknown, the peace of acceptance, the exhilaration of hope, and the endurance of love as father and son discover each other and find their way. It will bring help and inspiration to all those who wear these shoes, and enlighten all parents to celebrate the uniqueness of their children.”

  —Ricki G. Robinson, MD, MPH, author of

  Autism Solutions: How to Create a Healthy and Meaning ful Life for Your Child

  “Follow extraordinary father and gifted writer Tom Fields-Meyer as he walks with his special son, Ezra. Ezra’s struggles to live life fully and to be a participant in his beautiful family and the larger world will fill your heart and inspire you in your own challenges. His sweetness, courage, and resilience come alive in his father’s watchful gaze and masterful portrayal. Reading this book makes you feel like you just gained a new set of relatives—wise, sometimes goofy, always remarkable.”

  —Bradley Shavit Artson, dean, Ziegler School of Rabbinic Studies

  and author of The Everyday Torah

  “A book about autism isn’t supposed to be funny. But I laughed reading Following Ezra as much as I cried. There’s sadness here, but also great joy, boundless love, and inspiring devotion. Ezra teaches not only his father, but all of us—about our foibles, our silliness, our narrowness, and our capacity to grow, to learn, and to love. And in doing that, following Ezra—and reading his story—makes us better people. This book is a great and uplifting gift.”

  —Daniel Gordis, author of Saving Israel and Coming Together, Coming Apart

  “A spot-on memoir that becomes positively transcendent as we follow sweet, worried, joyful Ezra from childhood into early adolescence and the preparations for his bar mitzvah. This story will illuminate the experience of parenting a child with autism for those who don’t know it and will resonate with those of us who know it all too well. There are blessings along the way, and Tom Fields-Meyer depicts them beautifully.”

  —Cammie McGovern, author of Eye Contact and Neighborhood Watch

  NEW A MERICAN LIBRARY

  Published by New American Library, a division of

  Penguin Group (USA) Inc., 375 Hudson Street,

  New York, New York 10014, USA

  Penguin Group (Canada), 90 Eglinton Avenue East, Suite 700, Toronto,

  Ontario M4P 2Y3, Canada (a division of Pearson Penguin Canada Inc.)

  Penguin Books Ltd., 80 Strand, London WC2R 0RL, England

  Penguin Ireland, 25 St. Stephen’s Green, Dublin 2,

  Ireland (a division of Penguin Books Ltd.)

  Penguin Group (Australia), 250 Camberwell Road, Camberwell, Victoria 3124,

  Australia (a division of Pearson Australia Group Pty. Ltd.)

  Penguin Books India Pvt. Ltd., 11 Community Centre, Panchsheel Park,

  New Delhi - 110 017, India

  Penguin Group (NZ), 67 Apollo Drive, Rosedale, Auckland 0632,

  New Zealand (a division of Pearson New Zealand Ltd.)

  Penguin Books (South Africa) (Pty.) Ltd., 24 Sturdee Avenue,

  Rosebank, Johannesburg 2196, South Africa

  Penguin Books Ltd., Registered Offices:


  80 Strand, London WC2R 0RL, England

  First published by New American Library,

  a division of Penguin Group (USA) Inc.

  First Printing, September 2011

  Copyright © Tom Fields-Meyer, 2011 All rights reserved

  REGISTERED TRADEMARK—MARCA REGISTRADA

  LIBRARY OF CONGRESS CATALOGING-IN-PUBLICATION DATA:

  Fields-Meyer, Thomas.

  Following Ezra: what one father learned about Gumby, Otters, autism, and love from his extraordinary son/Tom Fields-Meyer.

  p. cm.

  ISBN : 978-1-101-54409-9

  1. Fields-Meyer, Thomas. 2. Autism—Patients—United States—Biography. 3. Fields-Meyer, Ezra—Mental health. 4. Autistic youth—Biography. 5. Parents of autistic children. I. Title. RC553.A88F.85’8820092—dc23 2011014572 [B]

  Without limiting the rights under copyright reserved above, no part of this publication may be reproduced, stored in or introduced into a retrieval system, or transmitted, in any form, or by any means (electronic, mechanical, photocopying, recording, or otherwise), without the prior written permission of both the copyright owner and the above publisher of this book.

  PUBLISHER’S NOTE

  Penguin is committed to publishing works of quality and integrity. In that spirit, we are proud to offer this book to our readers; however the story, the experiences, and the words are the author’s alone.

  While the author has made every effort to provide accurate telephone numbers and Internet addresses at the time of publication, neither the publisher nor the author assumes any responsibility for errors, or for changes that occur after publication. Further, publisher does not have any control over and does not assume any responsibility for author or third-party Web sites or their content.

  The scanning, uploading, and distribution of this book via the Internet or via any other means without the permission of the publisher is illegal and punishable by law. Please purchase only authorized electronic editions, and do not participate in or encourage electronic piracy of copyrighted materials. Your support of the author’s rights is appreciated.

  http://us.penguingroup.com

  For my parents,

  Lora and Jim Meyer,

  who were always there,

  following me

  Blessed are You, Lord our God, Sovereign of the universe,

  Who creates variety among living beings.

  —Traditional Jewish blessing

  While all of these events and conversations happened,

  some names and identifying details have been changed

  to protect the privacy of individuals.

  PROLOGUE

  Following Ezra

  The walk was always the same. Then one day it was different.

  In the summer of 1999, my wife Shawn and I spent two months with our three young sons at a retreat center nestled in the arid foothills bordering Simi Valley, California. The campus was a spectacular, sprawling property stretching over gentle, golden ridges dotted with eucalyptus, pepper trees, and cactus. Shawn, a recently ordained rabbi, was teaching Jewish texts and practices to a group of young adults. The job required long hours not only in the classroom but also in intense, private discussions of spirituality during meals in the dining hall, on long strolls, and over snacks late into the night. At the same time she was nurturing the souls of a few dozen twenty-somethings, we were also busy caring for our boys: Ami, who was five; Ezra, three; and Noam, eighteen months.

  Some months earlier, Ezra had begun displaying troubling behavior. He isolated himself from his preschool classmates to flip mechanically through picture books. At home, he spent inordinate periods absorbed in solitary, odd activities like lining up plastic dinosaurs and jungle animals in precise, symmetrical patterns across the back porch. His sensory system was clearly in disarray. That summer, he was so tortured by the cacophonous noises of the dining hall that he would cover his ears and run out the doors; at nearly every breakfast, lunch, and dinner we had to designate an adult to keep track of Ezra as he paced alone in small circles on the concrete patio or sought out insects among the boulders and agave plants on a nearby hillside.

  Ezra seemed agitated even in his sleep, and when he rose at daybreak, it fell upon me to prevent him from waking the other boys or creating enough of a disturbance to rouse the staff members and families neighboring our small bungalow.

  So Ezra and I began taking walks.

  The air was cool and crisp at that early hour, the best time to roam the grounds, where peacocks wandered freely and geckos scampered across stone walls and asphalt patches. Ezra was drawn to animals of all kinds, so we wandered down a short dirt road to visit a compact stable that housed the center’s small herd of horses, then continued up a knoll and into a modest pen, where Ezra could meander amid a few dozen chickens and, nearby, peek into a small aviary with parrots and a handful of pigeons. For a boy who spent most of the year in a Los Angeles neighborhood with all of the traffic, smog, and noise that came with it, this was heaven.

  After a few days, Ezra had worked out a circuit that he insisted on following each morning: paying a visit to the livestock and birds, then continuing a stretch to a little barn, past the swimming pool and sports fields, and up the road to where he had discovered a playground area. There, years before, campers had created a cluster of toddler-size animals molded from plaster. Ezra would sit on each one, always in exactly the same order: the giraffe, the camel, the snail, the turtle. Then we wandered to the nearby swing set, where I pushed him for a few minutes until he was ready to hop off and stroll back to the cabin, just in time to find his mother and brothers beginning to stir.

  One morning, instead of turning left to return to the cabin, Ezra turned right.

  “Other way, Ez,” I said. But he didn’t hear—or chose not to listen. Instead of heading back toward the family, he walked with resolve up the paved road, toddling a few steps ahead of me. I followed closely behind him, calling to him, to no avail. Then I dropped back a few paces. It was a private road, and I knew that at that early hour no cars were likely to come by, not even the groundskeeper’s rusty red pickup. So I let my young son walk as I faded ten feet, then fifteen, then twenty feet behind. I wondered whether he might become upset, realizing that I was not at his side. He didn’t. Ezra followed the curving road amid the brush and eucalyptus, up a small hill, around a bend, and on for nearly half a mile. A three-year-old boy ambling up a rural road, more and more isolated from everything and everyone he knew, my son seemed completely on his own—confident and naive, bold and aloof, utterly alone.

  I watched, feeling a combination of fear, bewilderment, and wonder. Fear for his safety; bewilderment at his seeming lack of awareness or connection; wonder at his resolve to follow his own path, to take the road he wanted, even if it was unknown.

  This is the story of what happened in the ten years following that summer, a decade that has delineated a personal journey, beginning in darkness, winding through desperation, fascination, love, and, ultimately, a sense of awe for our unique, exceptional son. I started the quest trying my best to be a good dad and an enlightened consumer, searching out the right doctors, the best therapy, the most promising medicine, the breakthrough diet. In time I learned that what I had been looking for was the wrong thing. Like many parents, I saw my son’s challenges as something to get past so that my family and I could get on with our lives. I eventually learned that this is life; this is what life is. It wasn’t about finding the right expert for my child; it was about learning to be the right parent.

  Ten years ago, I watched my solitary boy venture down an isolated road. For a decade, I have watched from an increasing distance as he takes a path all his own. In some senses, that has made his life richer and fuller. Yet Ezra’s path is so singular that I have wondered what he is missing by walking alone, in his discrete universe. And then there is this question: As his father, what is my role? To run ahead of him and lead him in a safe direction? To walk by his side, holding
his hand? To try to pull him back to familiar territory? Long ago, I made my choice: to follow Ezra and to watch, in awe and mystery, as my son makes his own unique way in the world.

  CHAPTER ONE

  He’s Gone

  “Sorry about the chairs,” the teacher says.

  It’s parent conference day at the preschool. As Shawn and I arrive on a chilly December morning, Karen gestures toward a pair of blue, toddler-size seats across a Formica-covered table from where she sits scanning a manila folder. Why do they always make us cram our adult bodies into these tiny chairs? It seems to reflect the absurdity of conducting conferences at a preschool. These two-year-olds aren’t taking algebra exams or memorizing the branches of government. What could a teacher possibly have to say? I want to be a good father, but I’m not convinced it’s worth taking the morning off from work and driving six miles to hear how my children are interacting with their Play-Doh.

  I decide it is important, though, more to check on the school than the children. After moving from New York to Los Angeles just a few months earlier, we enrolled Ami and Ezra at the neighborhood preschool without much research besides soliciting recommendations from a couple of friends. The conference will give us a chance to get to know the teachers and to introduce ourselves.

  We’re impressed with Ami’s instructor, an upbeat woman who regales us with stories about how well our oldest son has adjusted to the new environment. Ami, at four, has quickly forged friendships with virtually every child, distinguished himself by routinely volunteering to set up the apple juice cups, and charmed instructors with his smile and manners. “In fifteen years teaching preschool,” she says, “I have rarely had a child like this.”