The names of many of the children and parents appearing in this book have been changed and some biographical details have been altered. A small number of individuals described are composites.
Copyright © 2013 by Kristine Barnett
All rights reserved.
Published in the United States by Random House, an imprint of The Random House Publishing Group, a division of Random House, Inc., New York.
RANDOM HOUSE and colophon are registered trademarks of Random House, Inc.
LIBRARY OF CONGRESS CATALOGING-IN-PUBLICATION DATA
Barnett, Kristine.
The spark: a mother’s story of nurturing genius/Kristine Barnett.
pages cm
eISBN: 978-0-679-64524-5
1. Barnett, Jacob, 1998—Mental health. 2. Autistic children—Rehabilitation. 3. Mothers of autistic children—Case studies. 4. Autism in children—Case studies. I. Title.
RJ506.A9B278 2013 618.92′85882—dc23 2012032774
www.atrandom.com
Jacket design: Misa Erder
Jacket photograph: © Kelly Wilkinson/The Indianapolis Star
Jacket illustration: Jacob Barnett and Dr. Roland Roeder’s collaborative research in hyperbolic geometry
v3.1
Contents
Cover
Title Page
Copyright
Introduction
An Inch, or Ten Thousand Miles
A Baby Boy
Something’s Wrong
Scattered Skills
Inside the Diagnosis
An Ending, and a Beginning
Rainbows
Breakthrough
A Step Backward
The New Normal
Let It Shine
A Window onto the Universe
A Cup of Chicken Soup
Kindergarten Pro
Three Letters
Jelly Beans
A Boy Cave
Who Am I?
Saved by the Stars
Pop-Tarts and Planets
Two Pies
A Chance to Play
A Dream Come True
Dark Times
Jealous Angels
Bold and Underlined
Skipping a Grade—or Seven
An Original Theory
A Home Away from Home
Lucky Penny
Thanksgiving
A Roller-Coaster Ride
A First Summer Job
A Celebration
Postscript
Photo Insert
Dedication
About the Author
INTRODUCTION
I am sitting at the back of a university physics class while the students cluster in small groups around the whiteboards lining the lecture hall, ready to tackle the day’s equation.
Work proceeds in fits and starts. There’s a great deal of erasing. As the teams of students begin to bicker, I catch a glimpse of my nine-year-old son at the front of the room, chatting easily with the professor. The frustration level in the room mounts. Finally, my son pulls a chair over to a whiteboard and steps up on it. Even so, he must stand on his tiptoes, straining his arm as high as it can go.
This is his first encounter with the equation, just as it is for all the other students in the class, but he doesn’t pause to deliberate. Instead, the numbers flow fast and fluently from his pen. Before long, everyone in the room is watching. The students from the other teams stop their work to stare at this little kid in the backward baseball cap. My son doesn’t notice the gaping onlookers because he’s happily engrossed by the numbers and symbols flying onto the board. They mount up at impossible speed: five lines, then ten, then fifteen, spilling over into the whiteboard space of the group next to his.
Soon he’s talking to the others on his team, pointing and explaining and asking leading questions, the way a teacher would. A serious woman with a French braid breaks away from her own group, drawing closer to listen. She’s joined by a stoop-shouldered young man, who nods his head vigorously as comprehension dawns.
In a matter of minutes, all of the students at the front of the auditorium have gathered around my little boy. When he points out a trick he’s found in the equation, he bounces on the balls of his feet in delight. A bearded student calls out a question. I glance over at the professor, who is leaning against the wall with a smile on his face.
Now that they get the problem, the college students rejoin their own groups, and their markers begin to move as well, but the tension in their body language is unmistakable: No one in the room loves the equation like my son.
Class is dismissed, and the auditorium empties. My son packs up his markers, talking animatedly to a fellow classmate about a new NBA videogame they both want. As they come up the stairs toward me, the professor approaches and extends his hand.
“Mrs. Barnett, I’ve been wanting to tell you how much I enjoy having Jake in my class. He’s bringing out the best in the other students, to be sure; they’re not used to being lapped like this. To be honest, I’m not completely confident I’ll be able to keep up with him myself!”
I laugh along with him.
“Oh, gosh,” I say. “You’ve just pretty much described the story of my life.”
My name is Kristine Barnett, and my son Jake is considered to be a prodigy in math and science. He began taking college-level courses in math, astronomy, and physics at age eight and was accepted to university at nine. Not long after, he began work on an original theory in the field of relativity. The equations were so long they spilled over from his gigantic whiteboard onto the windows of our home. Uncertain how to help, I asked Jake if there was someone he might show his work to, and a renowned physicist I contacted on Jake’s behalf generously agreed to review an early iteration. He confirmed that Jake was indeed working on an original theory and also said that if the theory held, it would put him in line for a Nobel Prize.
That summer, at age twelve, Jake was hired as a paid researcher in physics at the university. It was his first summer job. By the third week, he had solved an open problem in lattice theory, work that was later published in a top-tier journal.
A few months earlier, in the spring of that year, a tiny article had appeared in a small local newspaper about a small charity my husband, Michael, and I had founded. Unexpectedly, that piece led to a story about Jake in a larger newspaper. The next thing we knew, camera crews were camped out on our lawn. Our phone rang off the hook with film people, talk shows, national news outlets, talent agencies, publishers, elite universities—the reporters and producers all desperate to interview Jake.
I was confused. I can honestly say that at the time, Michael and I had no idea why so many people were interested in our son. Sure, we knew Jake was smart. We understood that his abilities in math and science were advanced and that it wasn’t “normal” for him to be in college. But Michael and I were squarely focused on celebrating different victories: the fact that Jake had a decent batting average, a close group of friends his own age who liked to play Halo: Reach and watch movies together in our basement, and (although he’ll kill me for mentioning it) his first girlfriend.
These typical things in Jake’s life are, to us, the most extraordinary. So when the media descended, we were utterly baffled. It wasn’t until we had talked with some of those reporters and read or heard the stories they wrote that we began to understand our disconnect. The truth is, it took a glaring spotlight to show Michael and me that the story line of our lives with our son had changed.
You see, what those reporters didn’t understand was that Jake’s improbable mind is all the more remarkable for the fact that it was almost lost. When the media showed up on our lawn, we were still living inside the diagnosis of autism Jake had received when he was two. We had helplessly l
ooked on as our vibrant, precocious baby boy gradually stopped talking, disappearing before our eyes into a world of his own. His prognosis quickly went from gloomy to downright grim. When he was three, the goal the experts set for him was the hope that he’d be able to tie his own shoes at sixteen.
This book is the story of how we got from there to here, the story of a mother’s journey with her remarkable son. But for me, more than anything, it is about the power of hope and the dazzling possibilities that can occur when we keep our minds open and learn how to tap the true potential that lies within every child.
An Inch, or Ten Thousand Miles
November 2001
JAKE, AGE THREE
“Mrs. Barnett, I’d like to talk to you about the alphabet cards you’ve been sending to school with Jacob.”
Jake and I were sitting with his special ed teacher in our living room during her monthly, state-mandated visit to our home. He loved those brightly colored flash cards more than anything in the world, as attached to them as other children were to love-worn teddy bears or threadbare security blankets. The cards were sold at the front of the SuperTarget where I did my shopping. Other children snuck boxes of cereal or candy bars into their mothers’ shopping carts, while the only items that ever mysteriously appeared in mine were yet more packs of Jake’s favorite alphabet cards.
“Oh, I don’t send the cards; Jake grabs them on his way out the door. I have to pry them out of his hands to get his shirt on. He even takes them to bed with him!”
Jake’s teacher shifted uncomfortably on the couch. “I wonder if you might need to adjust your expectations for Jacob, Mrs. Barnett. Ours is a life skills program. We’re focusing on things like helping him learn to get dressed by himself someday.” Her voice was gentle, but she was determined to be clear.
“Oh, of course, I know that. We’re working on those skills at home, too. But he just loves his cards …”
“I’m sorry, Mrs. Barnett. What I’m saying is that we don’t think you’re going to need to worry about the alphabet with Jacob.”
Finally—finally—I understood what my son’s teacher had been trying to tell me. She wanted to protect me, to make sure I was clear on the objectives of a life skills program. She wasn’t saying that alphabet flash cards were premature. She was saying we wouldn’t ever have to worry about the alphabet with Jake, because they didn’t think he’d ever read.
It was a devastating moment, in a year that had been full of them. Jake had recently been diagnosed with autism, and I had finally come to understand that all bets were off as to when (or whether) Jake would reach any of the normal childhood developmental milestones. I had spent nearly a year stepping forward to meet the gaping, gray uncertainty of autism. I had stood by helplessly watching as many of Jake’s abilities, such as reading and talking, had disappeared. But I was not going to let anyone slam the door shut on the potential of this child at the tender age of three, whether he was autistic or not.
Ironically, I wasn’t hopeful that Jake would ever read, but neither was I prepared to let anyone set a ceiling for what we could expect from him, especially one so low. That morning, it felt as if Jake’s teacher had slammed a door on his future.
For a parent, it’s terrifying to fly against the advice of the professionals, but I knew in my heart that if Jake stayed in special ed, he would slip away. So I decided to trust my instincts and embrace hope instead of abandoning it. I wouldn’t spend any time or energy fighting to convince the teachers and therapists at his school to change their expectations or their methods. I didn’t want to struggle against the system or impose what I felt was right for Jake on others. Rather than hiring lawyers and experts and advocates to get Jake the services he needed, I would invest directly in Jake and do whatever I felt was necessary to help him reach his full potential—whatever that might be.
As a result, I made the scariest decision of my life. It meant going against the experts and even my husband, Michael. That day, I resolved to stoke Jake’s passion. Maybe he was trying to learn to read with those beloved alphabet cards, maybe he wasn’t. Either way, instead of taking them away, I would make sure he had as many as he wanted.
Three years before, I’d been ecstatic to find out I was pregnant with Jake. At twenty-four, I’d been practicing for the role of mother as far back as I could remember.
Even as a little girl, it was clear to me (and to everyone around me) that children were likely to hold a special place in my future. My family had always called me the Pied Piper, because wherever I went, there was sure to be a trail of little ones on my heels, waiting for an adventure to begin. My brother, Benjamin, was born when I was eleven, and right from the start he was never far from my hip. By the time I was thirteen, I was the go-to babysitter for the whole neighborhood, and by fourteen I was in charge of the Sunday school at our church. So nobody was the least bit surprised when I went to work as a live-in nanny to help pay my way through college. Then, after I got married, I opened my own daycare, a lifelong dream. I’d been around children my whole life, and now I couldn’t wait to have my own.
Unfortunately, the road leading to Jake’s birth was not easy. Although I was still young, the pregnancy was touch and go from the beginning. I developed a dangerous high-blood-pressure condition called preeclampsia, which is common in pregnancy and can harm both mother and child. My mother helped out with my daycare, as I was desperate to hold on to the baby. But the pregnancy became more and more fraught, as I went into preterm labor again and again. Eventually, my doctors became so concerned that they put me on medication and strict bed rest to help prevent premature labor. Even so, I was hospitalized nine times.
Three weeks before my due date, I was rushed to the hospital once again, this time in labor that couldn’t be reversed. A cascade of events made the outcome increasingly uncertain. For me, the scene was a kaleidoscope of people rushing in and out, alarms sounding constantly, as the faces of the nurses and doctors crowding the room grew increasingly tense. Michael says this was the day he saw exactly how tough and stubborn I could be. I didn’t know it at the time, but my doctor had pulled him aside to tell him that labor wasn’t going well and he needed to be prepared: It was likely he would be going home with either a wife or a baby, but not both.
All I knew was that in the middle of the hazy blur of noise, pain, medication, and fear, suddenly Michael was by my side, holding my hand and looking into my eyes. He was a tractor beam, pulling my attention—my whole being—into focus. That moment is the only clear memory I have of that frantic time. I felt as if a camera had zoomed in on us and all the commotion surrounding us had ceased. For me, there was only Michael, fiercely strong and absolutely determined that I hear him.
“There aren’t just two but three lives at stake here, Kris. We’re going to get through this together. We have to.”
I don’t know whether it was the actual words he said or the look in his eyes, but his urgent message broke through the fog of my terror and pain. He willed me to understand the unending depth of his love for me and to draw strength from it. He seemed so certain that it was in my power to choose life that he made it true. And in a way that felt sacred, he promised in return to be a never-ending source of strength and happiness for me and for our child for the rest of his days. He was like the captain of a ship in a terrible storm, commanding me to focus and to survive. And I did.
Real or imagined, I also heard him promise me fresh flowers in our home every day for the rest of my life. Michael knew that I had always been wild for flowers, but a bouquet from a florist was a luxury we could afford on only the most special occasions. Nevertheless, the next day, while I held our beautiful baby boy in my arms, Michael presented me with the most beautiful roses I have ever seen in my life. Thirteen years have passed since that day, and fresh flowers have arrived for me every week, no matter what.
We were the lucky ones—the happy miracle. We couldn’t know it then, but this would not be the last time our family would be tested or that we
would beat incredible odds. Outside of romance novels perhaps, people don’t talk seriously about the kind of love that makes anything possible. But Michael and I have that kind of love. Even when we don’t agree, that love is our mooring in rough waters. I know in my heart it was the power of Michael’s love that pulled Jake and me through the day Jake was born, and it has made everything that has happened since then possible.
When we left the hospital, Michael and I had everything we’d ever wanted. I’m sure every new family feels that way, but we truly felt that we were the most fortunate people on the planet.
On the way home, with our brand-new bundle in tow, we stopped to sign the final mortgage papers on our first home. With a little help from my larger-than-life grandfather Grandpa John Henry, we were moving into a modest house at the end of a cul-de-sac in a working-class suburb in Indiana, where I also would operate my daycare business.
Glancing over Jake’s fuzzy newborn head at a beaming Michael, I was suddenly reminded that it was pure serendipity that Michael and I had found each other—especially when our first meeting seemed so ill-fated.
Michael and I met while we were in college. Our seeming “chance encounter” was actually the ploy of my meddling sister, Stephanie. Completely unbeknownst to me, she had felt compelled to play matchmaker—a ludicrous notion, since I was emphatically not in the market for a beau. On the contrary, I was on the giddy cusp of becoming officially engaged—I hoped—to a wonderful young man named Rick, my very own Prince Charming. We were blissful together, and I was looking forward to our happily ever after.
Stephanie, however, had a “feeling” about me and a boy from her public-speaking class—a boy who was not just brilliant but electrifying, a boy she was convinced was my true soul mate. So she hatched a scheme.
On the afternoon she sprung her trap, I was busy in her powder room, readying myself for a date with Rick, with at least twenty different shades of lipstick and eight pairs of shoes out for consideration. When I finally emerged, I found that the person standing before me was not my boyfriend, but a boy I’d never laid eyes on before. There, in her tiny studio apartment, under false pretenses, Stephanie introduced me to Michael Barnett.
The Spark Page 1