Losing Tim How Our Health and Education Systems Failed
My Son with Schizophrenia
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LOSING TIM
HOW OUR HEALTH AND EDUCATION
SYSTEMS FAILED MY SON WITH
SCHIZOPHRENIA
PAUL GIONFRIDDO
COLUMBIA UNIVERSITY PRESS
NEW YORK
Columbia University Press
Publishers Since 1893
New York Chichester, West Sussex
cup.columbia.edu
Copyright © 2014 Columbia University Press
All rights reserved
E-ISBN 978-0-231-53715-5
Library of Congress Cataloging-in-Publication Data Gionfriddo, Paul.
Losing Tim: How our health and education systems failed my son with schizophrenia / Paul
Gionfriddo.
pages cm
Includes bibliographical references.
ISBN 978-0-231-16828-1 (cloth : alk. paper) — ISBN 978-0-231-53715-5 (e-book)
1. Gionfriddo, Tim—Mental health. 2. Schizophrenia in children—Patients—United States—
Biography. 3. Mental health policy—United States. 1. Title.
RJ506.S3G46 2014
362.2′6092—dc23
[B]
2014008507
A Columbia University Press E-book.
CUP would be pleased to hear about your reading experience with this e-book at cup-
[email protected].
Cover design by Jordan Wannemacher
Cover image is provided courtesy of the author
References to websites (URLs) were accurate at the time of writing. Neither the author nor
Columbia University Press is responsible for URLs that may have expired or changed since
the manuscript was prepared.
To Pam, my love, who supported me—in every
way—on this project; and to Tim, whose
courage always inspires me.
I wanted the moments of my life to order themselves like those of a life
remembered. You may as well try to catch time by the tail.
—JEAN-PAUL SARTRE, NAUSEA
Grant us wisdom to give priority to those measures of greatest urgency for the
common good of all.
—TIMOTHY GIONFRIDDO, GUEST CHAPLAIN, CONNECTICUT HOUSE
OF REPRESENTATIVES, APRIL 10, 1995
CONTENTS
Preface
one TIM BRINGS A GUN TO SCHOOL
two TIM GETS HIS START
three OUR INTRODUCTION TO SPECIAL EDUCATION
four A NEW SCHOOL, A NEW CRISIS
five SUSPENDED ANIMATION
six ROCKETING THROUGH MIDDLE SCHOOL
seven HIGH SCHOOL COOKS UP TROUBLE
eight WEST TO THE NORTHWEST
nine HOSPITALIZATION FROM THE NORTHWEST TO MIDDLETOWN
ten TIM COMES TO AUSTIN
eleven AMERICORPS AND THE CHAIN OF NEGLECT
twelve TIM BEGINS ADULT LIFE
thirteen TIM HITS THE REVOLVING DOOR
fourteen LAUNCHING TIM
fifteen TIM RETURNS TO MIDDLETOWN
EPILOGUE
Acknowledgments
References
PREFACE
W HEN MY SON TIM was a very young boy, he knew that I was
an elected official, and he understood that elected officials
made many of the “rules” by which people live. “My dad is
important,” he used to volunteer to people when we were introduced
to them. The problem was that he pronounced the word as
“impotent,” which typically elicited a giggle that puzzled Tim. Giggles
aside, he had no idea how apt a description that would become
when it came to my helping to make his own life more tolerable.
This book is in part a reflection on public policy and the way
public policy decisions I made in good faith affected Tim’s life. While
it is mostly my story and Tim’s, there are some universal themes in it
and plenty of other characters who walk through its pages.
Some of these characters play big roles; others walk on and
quickly walk off. Some are real heroes; others, I am afraid, may
come across as villains. That is not my intention, and so, except for
members of Tim’s immediate family, I have removed or changed all
the names and have even referred only generically to the schools
Tim attended and to most of the providers who served him. There
are a couple of exceptions when I couldn’t really disguise a name—
i.e., when there was only one provider meeting the description and it
played an important role in Tim’s life that only it could have played.
But I believe that every person and every entity appearing on these
pages had one thing in common: Tim’s best interests. The problem,
as you will see, was the rules.
As I imagine is the case for most parents of children with serious
chronic illnesses, in the course of over two decades I amassed
hundreds of hard-copy and electronic documents relating to Tim.
They traveled with me from Connecticut to Texas and then to Florida.
I saved all that I could, although there were plenty of times I wanted
to burn the whole pile of paper or smash the computer in frustration.
But after twenty years of storing them I decided it was time to make
sense of them. So I began to do what I had been wanting to do for a
long time—piece them into a narrative. I had no idea what the ending
would be. I just wanted to understand better what had happened to
Tim and me as we traveled his path of serious mental illness.
This book is the result. At first, it was all about Tim and not at all
about me. But then I realized that I needed to describe better how I
felt about what was happening to Tim. When I started to do this, it
dawned on me that I also needed to write more about the role I
played as a policy maker in determining what happened to him.
I proposed this to Health Affairs, the nation’s leading health-policy
journal. It liked the concept and invited me to write a short version of
the story. “How I Helped Create a Flawed Mental Health System
That’s Failed Millions—and My Son” was published as its September
2012 “Narrative Matters” essay (Gionfriddo 2012) and became the
journal’s most widely read article that month. Health Affairs kindly
consented to permitting the themes of that piece to appear in book
form, and Columbia University Press agreed to publish it.
Before Health Affairs published the essay, Tim did something I
found to be very courageous. He graciously gave his permission in
writing for his story to be told. When he did so, I don’t think that he
admired policy makers as he once had or had much respect for the
rules they’ve created that affected him most directly. But I think he
understood that if his story could help change the way we think and
move us to action, it was worth telling. Plus, he loves me, and I love
him.
As it unfolds, this story may sometimes seem strange or surreal
to parents whose children do not have a mental illness. I admit,
some of the things that happened to us may be pretty hard to
believe. But they won’t be to parents of children who do have mental
illness.
Part of the reason is that we don’t usually get clean diagnoses
from the start that we can then carry with us to schools or providers.
Parents of children with physical disabilities, developmental delays,
or genetic conditions often know where they stand. There are
accepted treatments and services to mitigate the effects, and they
can start treating those effects right away. Our kids’ diagnoses often
evolve over time, and it can be years before we get to the right one.
That means years of uncertainty, years of the wrong drugs, and
years of treatment that doesn’t work.
Even our introduction to, and experience with, the special
education system will seem unusual to many parents who are
familiar with it. Special education opens doors to instructional
programs tailored to an eligible student’s individual needs for
educational success. Many children (like my daughter Larissa) enter
the special education system with a clear label, and that allows for
the creation of a program with a clear set of instructional goals,
objectives, modifications, and accommodations. The process is
smooth, and these children thrive. But when the label isn’t so clear,
neither is the plan. And children with mental illness typically don’t
enter special education with a clear label. When a child is
challenging behaviorally—and this is all you really can say—what is
a school to do? And so when Tim first entered the special education
system—probably already three years into his disease—it was with a
“learning disability” label.
A reader may also wonder why Tim was in a regular classroom in
a regular school when the story in the first chapter unfolds, months
after his diagnosis of mental illness. Under the law, educational
services are supposed to be provided in the “least restrictive
settings.” For nearly every child in special education today, that
means instruction in a regular classroom first and the consideration
of increasingly more restrictive settings only later. I had no quarrel
when that standard was applied to Tim by our school district; in fact, I
wholeheartedly agreed with it. Besides, Tim was legally entitled to it.
Finally, there is some chaos in the story to come, but chaos is an
accepted part of life for every family dealing with a member’s mental
illness. Tim was raised by loving parents and, later, step-parents,
around three siblings and later one step-sibling. We were no different
from any other family in trying to balance Tim’s needs with the needs
of these siblings. Tim’s mother and I ultimately agreed on nearly
every decision we made on behalf of Tim. Not all parents do.
Undoubtedly, we will be criticized by readers for some of them. But
we made them in good faith at the time, on the basis of all we knew
in the moment. We did not have the perspective then that anyone
may have now. And criticizing anyone for circumstances outside of
their control is really a dead end. In any event, I believe that this is a
story that needs to be retold. And, I hope, it is a story to which all
parents will ultimately relate at some level—one that reminds us how
public policies also have consequences.
one
TIM BRINGS A GUN TO SCHOOL
O N WEDNESDAY, November 20, 1996, my son Tim brought a
gun to school. He thought he had a good reason—he was
angry with another student. He was eleven years old and in the sixth
grade. He had been diagnosed with a mental illness earlier in the
year.
That morning, as he waited for the school bus, he pulled the gun
from the bush in which he had hidden it the night before. As the bus
pulled up, he put the gun in a brown paper bag inside his book bag.
When he arrived at school, he went straight to his locker and put the
gun inside.
Tim forgot about the gun as he went about his school routine. At
the end of the day, he went back to his locker and grabbed his
jacket, leaving the gun behind.
As he stood in line for the bus, he noticed the student with whom
he was angry and remembered the gun. He quietly stepped out of
line and bolted toward the school, ignoring the calls of the bus
monitors to come back. Tim’s special education teacher chased after
him. Tim ignored him, removed the paper bag with the gun, and ran
in the opposite direction. He exited the school through a side door,
coming out beside a Dumpster. He had to think quickly. Students and
teachers were standing around one corner of the building, and
parents were gathering in the parking lot around the other. With no
easy escape, he stopped in his tracks and threw the bag into the
Dumpster just as his teacher emerged from the school.
His teacher looked at Tim, then peered over the top of the
Dumpster, reached in, and retrieved the bag. He pulled out the gun.
“Is this yours?” he asked. “Sort of,” Tim replied. Then he explained. It
was a BB gun. He was mad at the other boy because the gun was
broken. “He sold it to me for twenty dollars yesterday and it doesn’t
work, so I want to make him take it back and give me back my
money.”
The teacher relaxed a bit and said, “You know it’s against the
rules to have guns at school, don’t you?” Tim nodded. “For now,” his
teacher added, “this will be between you and me. Go back to your
bus line. I’ll see you tomorrow.”
Tim went through his normal routine the rest of the day. When he
came home, he did not tell me about the other student, the gun, or
the encounter with his teacher. He played outside for a while,
Rollerblading down our long driveway in the cool November dusk.
He watched television and played video games with his younger
brother, Ben, as I prepared dinner. He laughed and joked with Ben
and his sisters, Lizzie and Larissa, over a supper of spaghetti with
spicy calamari sauce. After dinner, he played with our dog, Peggy,
and then worked grudgingly on his homework after failing to
convince me that he had none. At bedtime, he relaxed with one of
his favorite Calvin and Hobbes books until I came by to kiss him
goodnight.
The next morning, Tim lay in bed for a while listening to rock
music. It was a typical morning—I had to nag him twice to get up and
get dressed so that he wouldn’t miss his bus. When he finally came
downstairs, he was too late to eat breakfast; he happily settled for a
breakfast bar and milk. I checked his book bag for his homework,
packed him a snack and lunch, and sent him out the door as the bus
pulled up.
I had no idea how this day would change our lives.
The principal was waiting for Tim when he arrived at school. “Did
you bring this to school yesterday?” the principal asked, holding up
the BB gun. Tim nodded. The principal told Tim that he had broken
the law and that the police were on their way. He also planned to
suspend Tim from school for ten days.
Then the principal called me. He had left a phone message for
me the previous day but had been unavailable when I called back. I
assumed that he was calling about Tim’s special-education-
mandated Individualized Education Program (IEP), in which we had
been negotiating changes for months.
I could not have been more surprised when he told me about the
gun. I was momentarily stunned when he added that the police were
on their way and that he was suspending Tim from school. Then I felt
a rush of adrenaline. “You can’t suspend him,” I blurted out. Tim’s
IEP explicitly forbade Tim from being suspended from school for any
reason. It was the principal’s turn to be surprised.
This wasn’t the first time he and I had battled over Tim’s IEP. In
fact, there were already armies of educators, administrators,
clinicians, lawyers, family members, and advocates involved in Tim’s
life. Tim’s gun-toting incident was just the spark that turned our cold
war hot.
November 21, 1996—the day after Tim brought his gun to school
—would be the day that changed the trajectory of his life. It was the
day he was first suspended from school, the day the justice system
first became involved in his life, and the day he first went sliding
down the steep slope to failure.
It was not as if things had gone smoothly for Tim up until then.
When he entered the sixth grade, he had already been diagnosed
with language-based learning disabilities, attention deficit disorder,
and clinical depression. He was receiving special education services
in school, therapy from a well-qualified psychologist, and treatment
from his pediatrician and a psychiatrist. He had a loving family and
involved, well-educated parents. But none of this mattered on the
day he brought his gun to school.
Tim fit a certain profile that was just beginning to emerge in the
mid-1990s—that of an unbalanced young man who might do harm to
innocent children. This was before Columbine, before Virginia Tech,
and long before Sandy Hook, yet the public already connected
mental illness with a propensity to violence. In “Violence and Mental
Illness: The Facts,” the Federal Substance Abuse and Mental Health
Services Administration quoted a study that noted that between 1950
and the mid-1990s, the proportion of Americans who associated
people who have mental illnesses with violent acts nearly doubled
(SAMHSA 2011).
This perception has always been more wrong than right. The
Institute of Medicine has noted that “the magnitude of the
relationship is greatly exaggerated in the minds of the general
population” (National Research Council 2006, 103). Others
concluded that “severe mental illness did not independently predict
future violent behavior” (Elbogen and Johnson 2009). In fact, people
with mental illness are more likely to be the victims of violence than
its perpetrators (SAMHSA 2011).
On the day he first tried to suspend Tim, the principal already
knew that there was no chance Tim would have used the gun in
school. By then—the day after the incident—the principal knew that
the gun was broken and that Tim had no ammunition. And had he
taken the time to check, he could have found good research to show
that Tim’s mental illness was not a significant risk factor, either.
So what risk factors are associated with violence and would have
warranted a call to the police? A history of violence, substance
abuse, and environmental stressors such as job loss, divorce, and
becoming the victim of a crime are some (Elbogen and Johnson
2009). The Institute of Medicine (IOM) also singles out abuse,
neglect, and living with parents who have been incarcerated
(O’Connell, Boat, and Warner 2009). Tim had none of these risks; he
was the child of a stable and loving family.
When the principal decided to call the police he was just following
protocol. But when he treated what Tim did as a criminal act, he
changed the conditions under which Tim was both treated and
educated. And he fed the perception that Tim was dangerous—a
perception that attaches itself to Tim and to so many others like him
even more so today.
For years, both SAMHSA and the National Institute of Mental
Health (NIMH) have worked to dispel the myth that more than a
small minority of people with mental illness are potentially violent. In
the aftermath of the Tucson shootings in early 2011, Dr. Thomas
Insel, the director of NIMH, reminded us that “those with serious
mental illness are eleven times more likely to be victims of violent
crime than the general population” (Insel 2011). But every time a
mass killing occurs, media coverage of the event tends to further
cement the relationship in peoples’ minds. In the wake of the Tucson
shooting, the mental illness of the gunman, Jared Lee Loughner, was
immediately identified as a factor in his actions, and a mental
disorder was automatically presumed to be a factor in the actions of
Adam Lanza, the Sandy Hook shooter. So, we begin to think, the
association must always be there, especially in children like Tim,
even though the experts reiterate that “the vast majority of people
who are violent do not suffer from mental illnesses” (quoted in
SAMHSA 2011).
But there is a clear connection between violence and mental
illness, and it is the opposite of what many of us think. Exposure to
violence can cause mental illness. The most vivid example?
Exposure to violence can cause post–traumatic stress disorder
(PTSD), a common mental illness in America. According to the
National Center for PTSD (2014) of the U.S. Department of Veterans
Affairs, 7 to 8 percent of us will have PTSD at some point in our
lives. And we know that all violence—not just the violence of war—
can cause PTSD and can contribute to depression, anxiety, and
other mental illnesses. We also know that children are especially
susceptible to its effects.
The Adverse Childhood Experiences (ACE) Study, an ongoing
collaboration between the Centers for Disease Control and
Prevention (CDC) and Kaiser Permanente, demonstrates the
connection between abuse and neglect during childhood and adult
dysfunction and depression. The ACE-affiliated authors Felitti and
Anda (2010) noted that 54 percent of adult depression could be
linked to adverse childhood experiences. ACE Study researchers
have also argued that the more violence to which children are
exposed, the more likely they are to experience depression, suicide
attempts, obesity, alcohol abuse, and a variety of other adverse
conditions.
Tim was diagnosed with PTSD three months after he brought his
gun to school, and for a time it seemed that this diagnosis would
explain many of his symptoms. But it would turn out that Tim did not
just have PTSD, and the truth is that if the only thing ailing Tim had
been PTSD, then with a proper response we might have been able
to turn his life around in sixth grade.