Parenting Mentally Ill Children Faith Caring Support and Surviving the System

by Craig Winston LeCroy

Author Craig Winston LeCroy Isbn 9780313358685 File size 4MB Year 2011 Pages 204 Language English File format PDF Category Family and Friendship This in depth exploration uses individual portraits to show what parents face as they love and care for their mentally ill children and cope with how the mental health system has failed them More than 40 in depth interviews giving parents the opportunity to tell their stories about caring for a child with a mental disorder An extensive bibliogr

Publisher :

Author : Craig Winston LeCroy

ISBN : 9780313358685

Year : 2011

Language: English

File Size : 4MB

Category : Family and Friendship



Parenting
Mentally Ill Children

Parenting
Mentally Ill Children
Faith, Caring, Support, and
Surviving the System

Craig Winston LeCroy

Copyright 2011 by Craig Winston LeCroy
All rights reserved. No part of this publication may be reproduced, stored in a retrieval
system, or transmitted, in any form or by any means, electronic, mechanical,
photocopying, recording, or otherwise, except for the inclusion of brief quotations in a
review, without prior permission in writing from the publisher.
Library of Congress Cataloging-in-Publication Data
LeCroy, Craig W.
Parenting mentally ill children : faith, caring, support, and surviving the system /
Craig Winston LeCroy.
p. cm.
Includes bibliographical references and index.
ISBN 978–0–313–35868–5 (hard copy : alk. paper) — ISBN 978–0–313–35869–2 (e-book)
1. Mentally ill children—Care. 2. Parenting. I. Title. [DNLM: 1. Mental Disorders.
2. Adolescent. 3. Child. 4. Parenting. WS 350]
RJ499.L355 2011
618.920 89—dc22
2010053263
ISBN: 978–0–313–35868–5
EISBN: 978–0–313–35869–2
15 14 13 12 11

1 2 3 4 5

This book is also available on the World Wide Web as an eBook.
Visit www.abc-clio.com for details.
Praeger
An Imprint of ABC-CLIO, LLC
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This book is printed on acid-free paper
Manufactured in the United States of America

To All Parents of Mentally Ill Children
Everybody is a story.
—R. Naomi Remen

Contents
Acknowledgments

ix

Chapter 1:

Introduction: The Crisis of Children’s Mental Health

1

Chapter 2:

Accepting the Verdict: My Child Has a Mental Illness

13

Chapter 3:

The Burden of Love: An Everyday Reality for Parents

31

Chapter 4:

Searching for Help: Expertise Is Hard to Find

51

Chapter 5:

Finding Help: What Matters to Parents?

73

Chapter 6:

Managing and Coping with Everyday Life: Struggles
and Tribulations

99

Chapter 7:

Faithful Acts of Caring: Lessons on a More Meaningful Life

117

Chapter 8:

Society’s Obligation: Doing More for Our Children

133

Appendix: Resources for Parents of Children and Adolescents
with Mental Illnesses

153

Notes

169

References

187

Index

199

Acknowledgments
During the course of my work, many parents took the time to speak to me about
their lives—and the conversation was often emotional and difficult. I deeply
appreciate the opportunity I had to listen and learn about lives of the parents
I interviewed. Your courage and compassion, your honesty, inspired me to complete this book, although it took more years than I had imagined. Through stories, laughter, and tears, we have shared a storytelling journey together. I hope
that this coming together can be the start of a pathway to greater hope, wisdom,
and valor as you navigate life’s waters. My goal was to merge enough common
themes to create something of value to all parents who might read this book.
I also hope that professionals will peruse these pages to learn, to question, and
to commit to a high moral standard of help.
I have been teaching social work for more than 25 years now. Along the way,
I have been privileged to work with some of the brightest, most committed, and
most genuinely helpful students in my final year of preparing this book. Eric
Bradley conducted a number of the interviews in this book and wrote a master’s
thesis that became a prelude to this book. His thesis was masterfully done and
is well represented in these pages. Danielle Demailo was the primary contributor
to the policy chapter (Chapter 8). Her research and writing were invaluable in
helping me finish this book. Mia Zamora made significant original contributions
to Chapter 7, Faithful Acts of Caring: Lessons on a Meaningful Life; her research
and creative writing added significantly to the final product. Christina Leber was
the primary contributor to the Appendix. My academic colleagues, Jose Ashford
and Judy Krysik, read drafts of some chapters and advised me along the way.
Together, all of you helped me plow through and meet my final deadline for completion of the manuscript.

x

Acknowledgments

I started working on this book seven years ago. I was honored to receive financial support for much of this effort. Arizona State University provided me with a
Dean’s scholarship to get the project going and also supported my effort when
I went on sabbatical. I was honored to fill the Zellerbach Visiting Professorship
at the School of Social Welfare, University of California–Berkeley, which provided me with some funds and an office in Haviland Hall on Berkeley’s intellectually stimulating campus. The sheer number of bookstores in Berkeley greatly
added to the reading list I created for this work. I lived in a small apartment in
a large historical house that was managed by the Berkeley Historical Society.
With the blessing of my wife and son, I had moved to Berkeley in retreat mode
to work exclusively on this project. However, after my six-month stay there
ended, we all headed off to New Zealand, where I was supported by the University
of Christchurch, School of Social Work. I continued my effort on the book and,
eventually, the project landed back home in Tucson, Arizona, where I finally
completed it.
I appreciate the support I received from Debbie Carvalko, my editor at Praeger
Publishers. After reviewing my prospectus, she immediately understood my purpose in writing this book.
I hope these printed pages offer something of great value for each of you who
read them.

CHAPTER 1

Introduction: The
Crisis of Children’s
Mental Health
Cole is no good, and for a mama to say that, for a mama, I wish I could
be dead. Used to be all I ever wanted was a child of my own. . . . But now
I think about doom, what it is to be doomed. Cole is living proof ill
winds blow in out of nowhere and stomp out love and mercy. But why
is that? I gave years trying to figure it out and I guess there are years
ahead of me to come. I won’t ever let up wondering what went wrong.
—E. Clark, Biting the Stars
“My daughter has punched me, kicked me, and slapped me. She threw a lamp at me
and cut my index finger deep to the bone.” Julie, a 45-year-old, composed mother
of four, continued her story, recounting many events that have thrown a dark
shadow over her life as a parent. Initially there were problems with compliance,
as daughter Tammy refused to shower and resisted the bedtime Julie set. Tammy
would begin screaming in an effort to avoid being controlled by her parents. Her
screaming was so loud that the family was eventually evicted from their apartment.
At a very young age, Tammy showed signs of being a violent child. One time she
locked herself in the bathroom for four hours, explains Julie. “After the first hour, I’m
thinking, what’s going on? After the second hour, I really started to get agitated.
After the third hour, I was saying, ‘Tammy, get out.’ I finally forced my way through
the door. The bathroom floor was wet and as I turned to leave, she shoved me, knowing that if I fell on my hand, I’d need more surgery, because it was recently broken.”
Julie looks up at me, adding, “We didn’t even have medical insurance at the time.”
She sums up her feelings about Tammy with a sense of conviction: “When you
stand before a judge, and you hear things like, ‘She’s a danger to herself. She’s a
danger to the general public,’ you’re thinking, ‘That’s my child.’ ”1

2

Parenting Mentally Ill Children

In the last several years Tammy went from what some would consider a
difficult child to what can aptly be described as an out-of-control child.
She was arrested at a motel, where police found drugs. Julie thought, “Sure,
marijuana”—but the hotel room was actually lined with cocaine. Her son heard
someone on the street call Tammy a slut. Another parent told Julie that she
saw Tammy flashing construction workers. Julie confesses that Tammy does not
understand the difference between love and sex and Julie knows she’s “very
sexually active.”
Tammy is 14 years old and suffers from a mental disorder known as bipolar disorder. She’s been on and off medications and in and out of treatment agencies.
Some of it helps; a lot of it doesn’t seem to make any difference.
Right now Julie does not have to contend with Tammy; she’s run away. But
this is not the first time she has left home unexpectedly: Tammy has run away
29 times in the last 8 months. Julie qualifies this behavior a bit, “Some of these
are walk-aways because she did come back home within 24 hours,” she explains.
But the runaway periods are getting longer—her last one was 2 weeks, the one
before that was 3 weeks, and the current one is at 3 weeks.
As she reflects back to these events, I can see the desperation in Julie’s tired
face. She tells me about how a parent deals with a runaway child: “I hunt her
down. I bang on doors. I ask the police to help me find her, but the police won’t
do anything unless I can tell them where to find her.”
Last week Julie got a tip from someone about where her daughter might be.
When she knocked on the door of the ramshackle trailer, a large man answered
and feigned an inability to speak English. She confronted him immediately,
“You understand ‘Policia’?” she quickly asked. “My daughter’s in this house.” As
she spoke those words, Julie wedged her way past the man and spotted her daughter bailing out a back window. She lowered her voice and looked down. “I looked
inside and began to cry. Tammy would rather be in filth with nothing, no food,
no clothing, than to be at home with her parents. We aren’t the best parents in
the world, but we do provide her with food, love, and the basic necessities of life.
That’s really hard. To realize that here’s this man, twice my age, laying in a bed
in the living room of this trailer, with three inches of dirt, no linoleum or carpet.
Three inches of dirt and beer cans. A tiny TV set. I don’t understand that.”
Even though as a society we have always been grudgingly aware of the fact that
there are a substantial number of individuals in our midst who suffer from mental
illness, we have historically overlooked the fact that many of those who have this
kind of disease are, in fact, children and adolescents. It was not until the publication of Knitzer’s 1982 landmark study entitled Unclaimed Children: The Failure of
Public Responsibility to Children and Adolescents in Need of Mental Health Services
that we began to comprehend the immensity of this issue.2 Knitzer’s study served
as a catalyst to focus national attention on the numerous gaps in mental health
services for youths, created a growing awareness with regard to children’s mental
illness, and stimulated more research in this area. However, even though this
book was well known in 1982, more than 25 years later the field feels like it is
barely scratching the surface.

Introduction: The Crisis of Children’s Mental Health

3

Just a few years ago, interest in mental health research and service delivery
became popular again with the release of the Surgeon General’s Report on Mental
Health, which outlined the status of mental health research and services in the
United States. In this report, an entire 70-page chapter entitled “Children and
Mental Health” addresses the current status of children’s mental health services
in the United States.3 One outgrowth of this publication was a similar document
entitled Report of the Surgeon General’s Conference on Children’s Mental Health:
A National Action Agenda, which outlined a number of specific goals for the field
of children’s mental health and presented a number of action steps that would
facilitate the accomplishment of these goals.4
Perhaps what is most striking about these documents is the estimate of
just how many youth in the United States are suffering from the effects of mental
illness. According to the Surgeon General’s report, the Methodology for
Epidemiology of Mental Disorders in Children and Adolescents (MECA) study
estimated that almost 21 percent of U.S. children ages 9 to 17 have a diagnosable
mental or addictive disorder associated with at least minimum impairment.
When broken down into more specific mental or addictive disorders, the
percentages are as follows: anxiety disorders, 13 percent; mood disorders, 6.2 percent; disruptive disorders, 10.3 percent; and substance abuse disorders,
2 percent.5 Alan Kazdin, one of the nation’s leading researchers on children’s
mental health, explains that if you consider the approximately 68 million
children and adolescents in the United States and a prevalence rate of 20 percent, then approximately 13.5 million of our nation’s youth have significant
impairment due to an emotional or behavioral problem.6
The overriding conclusion in the United States today is that one in 10 children suffers from mental illness severe enough to result in significant functional
impairment. That means approximately two children in every classroom across
America are suffering from a mental illness. At almost every child’s birthday
party in America, one of the guests will be struggling with a mental illness.
Additionally, the Surgeon General’s report explains that children and adolescents with mental disorders are at much greater risk for dropping out of school
and suffering long-term impairments such as an inability to attain and maintain
employment.7
This bleak analysis is not limited to the United States. The World Health
Organization (WHO) indicates that by the year 2020, childhood neuropsychiatric disorders will rise by more than 50 percent internationally to become one of
the five most common causes of morbidity, mortality, and disability among children.8 WHO’s report states the case for addressing children’s mental health issues
emphatically: “These childhood mental disorders impose enormous burdens and
can have intergenerational consequences. They reduce the quality of children’s
lives and diminish their productivity later in life. No other illnesses damage so
many children so seriously.” 9 Twenty-five years after the publication of
Unclaimed Children, there is recognition of the increasing prevalence of mental
disorders in children and adolescents and the need for governments, researchers,
clinicians, and families both in the United States and around the world to start

4

Parenting Mentally Ill Children

thinking critically about how to reclaim these children and address their
problems.
At the beginning of this ordeal with Tammy, Julie was constantly questioning
herself: “What was I doing wrong?” Like a lot of parents I spoke with, Julie has a
difficult time with excessive worrying and questions herself repeatedly about her
parenting skills.
You can see the exasperation welling up in Julie. She has recently been
evicted from her apartment because of Tammy’s behavior. “It’s never been a
thought of mine to get rid of my child. But right now, I’m more ready to put
her into some kind of drug rehabilitation program. Let her do some time and
straighten out.” I can see irresolution in Julie’s face as she assures me, “If I don’t,
we’re going to find her in a ditch dead, and I know it. If not, raped or heaven forbid what. This is what goes through a parent’s mind.” And then, as if she is trying
to convince herself, Julie quickly claims that Tammy is choosing to be where she
is at and choosing to do what she wants to do. Julie’s pretext is that Tammy
understands the consequences and the potential risks of her actions.
Throughout the interview, Julie’s emotions and the mental anguish she lives
with are revealed. She readily admits she has had a lot of counseling—counseling
that is focused exclusively on dealing with her daughter and the ways she
manages to cope with it all. “What am I supposed to do, dump my child? That’s
the only thing I cannot do.” Too often, Julie finds herself in situations where
she simply does not know what to say or how to act in response to Tammy’s
out-of-control behaviors. She describes feeling ashamed and hurt and having “a
hundred billion emotions at once.”
Julie confesses, “I’m worried about her, but all the tears in the world won’t
bring her home. It took me forever to realize, and a lot of tears, that it isn’t me.
It’s her. She is responsible for her own actions.” As she reflects on what she has
learned from her experiences, one question haunts her: “My God, what could
I have done differently?” Mixed in with all the questioning, I can sense one confident perspective that surfaces. “If you have a bipolar child, you’re going to have
problems,” she concludes.
And, as Julie realizes, these problems do not go away. While many people
think about raising children until they reach 18 years of age, Julie knows that
“a mother is a mother forever” and that while other parents may look forward
to a life of their own after their children are adults, that will not be her fate.
“The way I see it, if I allow myself, I’m bound down with grandchildren, because
my child is obviously not able to take care of any children. She’s not protecting
herself—to not have babies, to not catch AIDS, to not catch STDs. That’s a
lot for a parent to worry about.”
As I sought parents to interview for this book, the significance of the opportunity to tell “their story” became more and more clear. My initial attempt to
recruit parents for this study included going to mental health agencies and meeting with groups of therapists to explain my study. I was almost universally confronted with mental health professionals who did not believe parents would
have the time or inclination to talk with me. They felt if I paid the parents to

Introduction: The Crisis of Children’s Mental Health

5

participate in the study, perhaps a few would contribute. They were not optimistic, and because the mental health professionals believed parents wouldn’t participate, there was little follow-up on my requests to contact parents. This
observation is, in itself, an example of how little understanding most mental
health professionals have about the needs and experiences of parents of mentally
ill children.
When this process did not result in very many referrals for me, I posted flyers
in agencies inviting parents to talk with me about their experiences in parenting
and obtaining mental health treatment for their child. I was quickly flooded with
calls from parents who wanted to describe their experiences being parents of a
mentally ill child. In contrast to what the mental health professionals told me,
parents were interested in taking the time to talk, to share their experiences.
Ironically, it is this sharing of experiences, this storytelling, that is a critical
and an important process absent from the mental health service delivery system.
There is something very basic and fundamental about telling one’s story.10 In
discussing the sociology of illness, Arthur Frank discusses the “wounded storyteller,” noting that ill people’s storytelling is guided by a sense of responsibility
and represents one way of living, as he says, for the other. According to this
author, “People tell stories not just to work out their own changing identities
but also to guide others who will follow them.”11 Frank puts his finger on a critical aspect of storytelling by recognizing that it has an element of testimony and
that such testimony is inherently valuable—even therapeutic. People who suffer
need to tell their stories.
It may, indeed, be difficult for professionals to listen to what parents have to
say about their experiences. It is, in many respects, narrative or storytelling about
suffering. The voices are varied, yet the pain is a persistent theme. Professionals
may have turned away from this pain because it may be too difficult for them to
hear. The vulnerability it provokes in the professional may challenge his or her
true commitment to help.
In the end, such listening is a moral act. To hear the experiences of parents can
bring sanity and reduce suffering. To bear witness is an act of caring for another.
In many respects the process I experienced, as parents told me their story of
their child’s mental illness, was a call to tell their story. Such experience of narrative encounters may in some small way help repair the damage done to a mother’s
(or father’s) sense of self, her esteem, her ability to feel like a good mother.12
Why is it that so many parents told me they had never had the opportunity to
“tell their story”? I can only surmise the answer to this question. Perhaps storytelling is disregarded in mental health treatment because the initial purpose of
a visit is for the practitioner to take a “pychosocial history,” which is different
from hearing the story the parent has to tell. True, such storytelling can interfere
with proper assessment and diagnosis of the client—a key part of “proper” treatment on the mind of the therapist or clinician. Perhaps the helper does not want
to entertain the prospect of hearing a story that he or she might not be able to
make sense of, or that the practitioner does not have to time to listen to, or that
may reveal aspects of living that the helper would rather just not hear.

6

Parenting Mentally Ill Children

When I teach my “Introduction to Social Work Practice” class to university
students, I stress the need to “hear” and “listen” to the client and not just do
the assessment or complete the psychosocial history. I often tell students about
a client I saw at a child outpatient clinic where I was working. She was a victim
of domestic violence and was living with her children at a shelter. However, staff
at the shelter did not want to “hear” her doubts about leaving her husband, her
concerns about surviving financially, and her ambiguity about whether she could
strike out on her own—so she came to see a therapist at another clinic who
might listen to her. It is commonly accepted that without listening, without having a level of empathy with another person, the change process is more likely to
halt than begin. An important goal of this book is to help mental health practitioners listen better to their clients—the parents of mentally ill children—as
they reveal important aspects of their true selves, and relay heartfelt experiences
about people presumably trying to help them.
Because I am a social worker by training and interested in how people receive
and accept social services, I look here for patterns or interpretations that may be
of benefit to mental health practitioners. Because I have gotten close to the
parents I interviewed, I may be overly critical, but I am committed to helping
change how parents are helped by mental health professionals. If nothing else,
I hope to describe how mental health professionals interact with the mental
health system.
What is most critical about capturing parents’ “quest” stories, as Arthur Frank
calls them, is that they are in essence manifestos, public declarations. A quest
story addresses suffering directly, and people are motivated to share their stories
by their belief that something is to be gained from the experience.13 An important narrative quest story will seek to use the parent’s experience of suffering to
move others forward to an action agenda. Doing these interviews, I could tell
that some parents had a quest story underlying their interest in talking with
me. They were, in essence, saying: “I am experiencing this crisis now, I am living
through it, and I can share this with some hope that other parents will find some
meaning in it.” An important reason for writing this book is to bring these messages to witness, because maintaining silence about such messages can only lead
to little or no resolution.
For many of these parents, there is an important subtext to their stories: How
have I managed to deal with this problem? One goal in documenting their
accounts is the moral purpose of providing experiences of other parents as an
example (or witness) of how they have coped with the burden of love they feel
with their child, developed a sense of faithful caring, or managed to find meaning
in sorrowful events. Parents will be able to affirm their similar feelings and experiences, and they may also gain a better framework for making sense out of their
own experiences.14 After reading these accounts, parents may experience the
“looking glass self,” a reflection of many aspects of their lives. Ideally, parents will
also be able to look at their circumstances through new windows. If I am successful here, I will be able to open up windows that many parents have not really
looked through but that, at the same time, seem strikingly familiar.

Introduction: The Crisis of Children’s Mental Health

7

I met Chris on a sunny afternoon in my office. She is a soft-spoken woman,
with long blond hair flowing down her shoulders. Chris would be the first parent
I interviewed for this book. As I shut the office door, she began telling me an
intense saga that would reverberate deeply for me as I contemplated her life
story. We talked for hours and covered her experience with John, who had noticeable difficulties at birth. Chris’s first encounter with professionals came when she
enrolled her son in school. She tried to place him in preschool but described it as
a “nightmare” because John had so many behavior problems—running around,
eating things, breaking things, and stealing toys from other children. When he
was five, she tried again and enrolled him in the local public school. “I can remember going to the school and watching him go through the gates and just sitting and
crying, because I knew that the school would call me and tell me about his behavior problems.” Eventually, they put John in a special education class and attempted
to teach him to read, but he simply could not focus long enough to learn much.
Chris described the common pressure many parents feel to medicate their
children because of behavior problems. At five years old, John began what would
become a lifelong involvement with psychiatric medications. He was diagnosed
with attention-deficit disorder and prescribed Ritalin, the drug commonly used
to treat this disorder. Chris described how John at that young age already knew
that he had a problem unlike other children: “He knew something was wrong himself, and that he had to take medication. I clearly remember him sitting in bed several months after he started taking the medication, and he looked up at me and
said, ‘Mama, I just want a big knife and stick it in me and die.’ ” Chris gets a complete look of absorption on her face and exclaims, “This is a five-year-old asking to
die!” John could explain that he did things he wasn’t supposed to do, but he just
didn’t understand why he did those things. At this age, John was getting into
everything and was breaking, crushing, and smashing things on a regular basis.
At this point, Chris is describing the normal progression that many parents
face with children who have serious behavior problems, but her story reveals perhaps the darkest side of what can happen with children who are difficult to manage. Her marriage was clearly strained from all the problems the couple
encountered with John. Although Chris found a protective love for John and
developed a meaningful relationship with her son, her husband was not so forgiving of John’s misfortune. Her husband would not allow for any “help”—no
counseling or therapy—but for a while he agreed to the medication. At some
point he decided even that medication was not acceptable, because it made John
“retarded.” His father’s response to the situation was to become harder on John—
what he needed was to “straighten up.” But John continued to have problems. He
was still not consistently potty trained, and Chris tells me about a time when
John had an accident and the father was furious. He grabbed John’s pants from
the floor and stuck them on his head, then rubbed John’s face in the mess he
had created. As Chris speaks, I can see a tinge of guilt. She explains her behavior:
“To this day, I can’t believe I allowed this to happen, out of fear. I should have
intervened; sometimes I did and ended up having to hide my face for a week
because I was black and blue.”

8

Parenting Mentally Ill Children

The severe stigma Chris faced as a mother began at home but did not end
there. She describes a lifetime of isolation that continues to this day. The rejection and isolation she feels are because of John—specifically, society’s nonacceptance of him. She tried to get help from day-care providers and friends, but the
story was always the same: “We cannot handle him. He writes on the walls, wets
his pants, we can’t stand it. You have to take him.” Chris got accustomed to the
immediate wall that would go up upon any encounter with other acquaintances.
She did not get invited to other people’s homes for dinner. There were no play
dates for John. No one sent invitations to birthday parties. She retreated alone
with John to the only place she could go—her own home.
Chris’s encounters at the school contributed to her sense of inadequacy as a
parent and reinforced the stigma she felt. Whenever she went to visit the school,
she felt as if she was the target of disdain. “You can feel the looks, the way people
respond to you.” School personnel quickly became frustrated with John and
responded to Chris with a lot of defensiveness. Whenever she was called into a
teachers’ conference meeting, there was never any problem solving involved.
Chris explains the mantra she heard from school officials. They didn’t ask, “What
can we do to support John and you?” The message was, “You need to get him on
more meds. He has behavior problems.”
Things progressed and in many ways got worse for John and Chris. Chris is a
single mother now, like almost all of the parents I interviewed. Eventually after
witnessing her husband mistreat John, and being regularly beaten herself, she
broke free of her marriage. But she endured physical and verbal abuse, the
multiple affairs her husband had, and experienced many encounters with Child
Protective Services.
When John was in the seventh grade, he tried to commit suicide. He
attempted to set himself on fire, but ended up lighting a field on fire. He was
not taking his medications because, unbeknownst to Chris, while John was in
the care of his father he was not allowed to take the medication. Chris believes
this practice led to John smoking, as he self-medicated with cigarettes. When
John’s father found out about the fire, the child was given a beating. John
reported his father to Child Protective Services two weeks after the abuse. The
investigation did not turn up anything, however, because by the time Child Protective Service workers examined John, his bruises had healed. Chris remembers
the call from the agency workers: “They told me, if you do not report these
abuses, we are going to take your kids away from you.” What was disturbing was
that at that time Chris did not know John’s father had hit him. As a result of
these events, the family got a referral to receive social services—the first time
Chris and John were referred for other services. Not even the school district
had helped the family find any additional services, other than the medication.
And no one had suggested that Chris obtain any professional help for herself.
Chris and John represent many of the families who not only suffer from the
impact of mental illness, but even more disheartening, need mental health services
and do not get them. One of the primary conclusions of the Surgeon General’s
report on mental illness is that many children who need services go without them.

Introduction: The Crisis of Children’s Mental Health

9

Of those children with a serious emotional disturbance, an estimated 75 to
80 percent fail to receive specialty services such as individual treatment, and the
majority of the children receive no services at all.
What is even more overlooked and in great need is individual support and
guidance for the parents. This aspect of mental health treatment is rarely mentioned—even the Surgeon General’s report does not identify it as a critical need.
The most “help” John will ever receive is from his mother. Chris has faced guilt,
shame, and stigma—alone, with no support from anyone. She has suffered physical abuse. Her everyday life is consumed with caring for her son, yet no agency,
no school, no professional reached out to her to provide the help she needed,
until her circumstance became dire. At one point, Chris attempted suicide.
“I thought about dying for a long time. I thought about killing myself. I needed
to just do something. Somehow, God reminded me that Christmas was coming.”
Chris made it out of her deep despair, but not all parents do.
Many of these parents live in a world filled with chaos—and it is most certainly a world where they have lost control. Without control, there is no sense
of resolution.15 The parents’ lack of control over their child’s symptoms is complemented by the mental health system’s inability to control the symptoms. For
many mental health professionals, there is a denial of the limited extent to which
their work can impact the child. This refusal to acknowledge these shortcomings
borders on a breach of ethics because no one helps the parent confront the awful
truth about the likely prognosis for his or her child. When there is a pretense of
successful treatment, there is denial of the suffering of what it cannot treat.16
Julie, after a lot of suffering and sorrow, finally realizes that her daughter’s fate
is not in her hands. She continues to reconcile her efforts to do “enough” and not
beat herself up too much. Chris talks about the utter lack of control in her life.
She finally figured out (by herself) that to get any sleep, she had to unplug the
phone and simply not worry about her child (who is now living in a group home
and old enough to be “independent”) until the next morning when, after a full
night’s sleep, she could address whatever presented itself. She recounted the long
weeks that went by, where she cried herself to sleep every night.
These are only two of the many parents whose stories this book will present.
Surely their stories bellow a need to be heard and understood, not as clients or
patients, but as parents in their everyday efforts to survive.
In spite of the difficulty of dealing with mentally ill children and the incidence of mental disorders in children, there is simply far too little written about
parenting mentally ill children. One obvious example is Marc Bornstein’s series,
Handbook of Parenting.17 This five-volume set addresses the topics of children
and parenting, the biology and ecology of parenting, being and becoming a
parent, social conditions and applied parenting, and practical issues in parenting.
It contains 86 chapters and 3,216 pages of text, none of which addresses parents
of mentally ill children. There are chapters on parenting infants, parenting
adopted children, single parenthood, gay parenthood, parenting talented children, even psychoanalysis and parenthood, but not parenthood and mentally ill
children. Some chapters come close: parenting and child maltreatment,

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