Stuck in Time: The Tragedy of Childhood Mental Illnessby Lee Gutkind
Four-fifths of American children with serious mental health problems receive no professional treatment whatsoever. They are the product of an overextended and often neglectful/b>
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A harrowing exploration of one of the country’s most troubling hidden shames: the widespread neglect of disabled children by the institutions that have sworn to protect them
Four-fifths of American children with serious mental health problems receive no professional treatment whatsoever. They are the product of an overextended and often neglectful system that, as Lee Gutkind writes, has reached the level of insanity. Following the stories of three children—Daniel, Meggan, and Terri—Stuck in Time chronicles the tragedies and injustices wrought not only by the deficiencies of the mental healthcare system, but by government policymakers who have failed to address the problem. Through these children and their families, Gutkind explores mental illness as both a scientific and social issue, from the harsh economic realities of supporting a disabled child to the immense difficulty of finding a suitable counselor.
Written with passion and piercing detail, Stuck in Time is a poignant examination of three families fighting against impossible circumstances, and of a system too inflexible to accommodate the helpless victims it is meant to support.
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Stuck in Time
The Tragedy of Childhood Mental Illness
By Lee Gutkind
OPEN ROAD INTEGRATED MEDIACopyright © 1993 Lee Gutkind
All rights reserved.
I first learned of Tom and Elizabeth Scanlon from Debbie Rubin when she and I met for coffee one afternoon in the cafeteria of Western Psychiatric Institute and Clinic ("Western Psych" to Pittsburghers), part of the University of Pittsburgh Medical Center. Rubin, a social worker on the Adolescent Affective (Mood) Disorders Unit, 3 West, had just completed a family therapy session with Tom and Elizabeth and their fifteen-year-old daughter, Meggan, which she described as "the saddest meeting I have ever heard." Elizabeth was at her wits' end, sobbing hysterically, and then Meggan read excerpts of the personal journal patients are required to keep. "She began to cry and then Tom began to cry. I cried, too," said Rubin. "Elizabeth and Tom are going through a mourning process—mourning the loss of who they had dreamed their daughter would be."
I asked Debbie if I could meet the Scanlons. I had been observing on 3 West for about six months, during which time I had come to realize that facilities like Western Psych, although scientifically renowned, attracted a large majority of disadvantaged children, adolescents, and adults. For a variety of reasons, poor people are more apt to be victims of mental disorders from the earliest ages.
In a 1989 report, Research on Children and Adolescents with Mental, Behavioral and Developmental Disorders, the Institute of Medicine (IOM) identified nine primary factors leading to mental illness in children, many directly related to the family's socioeconomic position. These include biological insults, such as physical trauma or exposure to toxic chemicals (lead poisoning) or drugs; poor prenatal care, resulting in a high risk of prematurity; persistent environmental adversity, such as poverty, inadequate schools, or homelessness; abuse and neglect; and disturbed family relationships. Indirectly related are causes that include chronic physical illness, such as leukemia, diabetes, epilepsy, and AIDS; cognitive impairments such as those resulting from mental retardation and deficits in sensory perception, including blindness and deafness; parental mental illness, with the accompanying and often traumatic disruptions of family life; and basic genetic factors that increase a child's vulnerability to a host of mood and anxiety disorders.
Though poverty is often a precursor to mental illness, middle-class families with children who have emotional problems must consume many of their resources before they receive child welfare support. The Scanlons had exhausted their savings, as well as the equity in their home, and had gone $42,000 into debt in order to provide special education and counseling for Meggan, their younger son, Doug, and themselves.
Even more perplexing to the Scanlons was the fact that after all this time and effort from pediatricians, psychiatrists, and psychologists, no one could say with certainty what was wrong with Meggan—why she acted the way she did—or, more important how to control or modify her behaviors. Theories about Meggan's diagnosis and treatment were plentiful, but successful solutions had not been forthcoming. Equally dismaying was the fact that some people, friends and family members particularly, actually doubted that Meggan was mentally ill, attributing her behaviors to normal childhood development and/or poor parenting. And it was entirely possible that Tom and Elizabeth had significantly contributed to Meggan's downfall—the puzzle of mental illness is convoluted and intertwined.
THE SCANLONS ARE an engaging and youthful couple, both in their early forties. Tom is of medium height, with brown hair neatly combed to the side, and a rough, reddish complexion. For a while, he lived in Johnstown, Pennsylvania, the coal-country town of 20,000 where the popular Paul Newman movie about minor league hockey, Slap Shot, was filmed. Tom's parents were strict and authoritarian, and Tom's inability to discipline his daughter, as did his parents their son, has been a source of conflict for both sides of the family. He is disciplined about himself, though, watching his diet, keeping physically fit. In 1990, he ran the Marine Corps Marathon in Washington, D.C., in a respectable three and a half hours. As an accountant who serves as liaison between his employer, Westinghouse Electric Company, and the Internal Revenue Service, he is patient, down-to-earth, and always congenial.
At first meeting, Elizabeth is more extroverted. She recently earned an undergraduate degree with a major in sociology and minor in creative writing "so that I could capture our exciting adventures with Meggan," she says with a nervous but hearty laugh. She laughs often, with disconcerting spontaneity, while describing some of her worst moments as a parent. Her sudden bursts of humor in unfunny situations sometimes seem surreal.
Her father was a faculty member at Pennsylvania State University, and her maternal grandfather's name was Millard Fillmore Kidney. "There have been many people in our family with the same name, and we are definitely related, although this is not a source of pride or satisfaction." The laughter erupts again, revealing a row of small, straight teeth. "What can you say about a man—even a former President of the United States—who was elected to office on the 'Know Nothing' party ticket?"
The Scanlons live in Mt. Lebanon, a well-to-do Pittsburgh suburb with a school district recognized for excellence, producing more National Merit Scholars than most other districts of its size in the nation. "We're an old-style family," Meggan told me, "but we have lots of fun. Everybody has a lot in common. When people argue, it is about stupid things. My parents get along really wonderfully. We live in a house where the outside looks like a modern home but the inside is all decorated with country stuff."
In a way, the Scanlons' life is also much different on the outside, in that it resembles a comfortable suburban family existence, compared to the gauntlet of suffering endured within. When she wants to be—and especially with strangers and adults—Meggan is incredibly charming. After Meggan was interviewed for an exclusive private school, her parents asked the admissions counselor if she would be accepted, to which he replied: "If she wanted to, she could be elected vice-president of AT&T."
In addition to caring for Meggan and Douglas, thirteen, Elizabeth works full time as a business consultant/office manager for a group of orthopedic surgeons in private practice and part time as a student. "The worst day of my life was when I graduated college. There were no more classes to attend. I immediately moved into graduate study and the work force because I could not bear the thought of coming home and facing Meggan." Escape has been a primary motivation almost from Meggan's birth.
"I remember a very special weekend," says Tom. "We got Elizabeth's sister to watch the kids, and we came to Pittsburgh, shacked up in a hotel, went to movies and dinner. Driving back was the worst I had ever seen Elizabeth. She literally cried the entire way, because she was returning to Meggan. How she's lasted this long is beyond me." He persuaded her to put the children in a day-care center and find a job.
"Meggan liked the structure of the day-care center," Tom continued. "She liked having other kids to play with and planned activities. But all that stuff dries up when you get to be a teenager, and that's when all the serious problems started. She just got out of control. Elizabeth kept saying, 'Maybe I should quit my job and stay home.' But I resisted. 'In a matter of six weeks, you'll be in a nuthouse.'"
Outside the home, Elizabeth's friends "identify me as being a mover, somebody in control: 'If you want something done, ask Elizabeth.' Inside my house I am like dirt on the floor that my daughter grinds into the rug. Her rhetoric can crush me. Meggan takes a razor blade to my psyche. My daughter can make my life miserable; she rips me to shreds."
Tom and Elizabeth were very open with me; one might almost say anxious to talk to me because, I think, hardly anyone except social workers fulfilling the responsibilities of their profession ever listened to them. Real people—family, friends, and neighbors—were not particularly responsive. Elizabeth's family had problems of its own, so they couldn't always be bothered by Elizabeth's concerns. Tom's family was convinced that Meggan had not been properly disciplined, which was the reason for her bizarre and oppositional behavior. What she needed was "a good kick in the butt to knock some sense into her."
Friends discounted Meggan's actions with comparisons to those of their own children. If Elizabeth said Meggan screamed at the top of her lungs for hours, they would reply, "You should hear my daughter when she's angry." If Elizabeth complained that Meggan stayed up half the night or walked uninvited into their bedroom and stared until she or Tom opened their eyes, friends would say, "All children have trouble with sleep," or, "She's only an impetuous teenager; give her time to grow up." But the Scanlons had been giving Meggan time and monumental effort from the day she was born.
Meggan Scanlon was a different sort of baby from the moment she entered the world. At the hospital nursery, Meggan alienated the nurses by waking all the other babies and upsetting their feeding schedule with her constant crying. At home, she was skittish and volatile, overly sensitive to light, noise, any stimulation. "She just didn't seem real happy, and she was hitting herself, angry all the time," said Elizabeth. "She was in the hospital emergency room constantly. She broke her leg when she was three, and she was constantly falling on her face. She sustained a second-degree burn from a grow light. She took a razor and shaved off her lip. She shoved a button up her nose. She drank prescription medicine, set fire to her bedroom. There were gates all over the house."
What confounded the Scanlons was their inability to exercise any control. "When she was four years old, not yet potty trained, she learned how to take her diapers off. We used the cloth diapers, and she was able to unpin them, but couldn't put them back on. At night, she would call us to her room to show how creative she had been, being able to take her diaper off. We told her, 'You can't do that, Meggan; you're going to lie here in bed for the whole night in a puddle of water.' We put the diaper back on, but the next night, 'Mom, Dad.' She'd got it off again. We spanked her, but it made no difference.
"Every night she would announce with glee that she had taken her diaper off. Every night. By the end of the second week, we looked at each other—we were both shaking—and decided to stop fighting. She would never give up. No way. As the years passed, we finally recognized that Meggan always resists. You could absolutely beat Meggan to death and she would not give in or stop fighting."
During Meggan's first four years, the Scanlons changed pediatricians five times. One pediatrician maintained that they were facing the normal challenges of child-rearing. Bringing up the child was a war and you had to plan your battles and win when you could. Another pediatrician at a local child-guidance center in Pittsburgh provided a name for Meggan's problem. "She's temperamentally difficult," the doctor concluded after listening to a description of Meggan's oppositional behavior.
"This was the first time anyone had actually acknowledged that it was not our parenting at fault," said Tom, "that we had a problem child. We were almost weeping with joy because it wasn't us. We looked at the doctor and asked how to treat a 'temperamentally difficult' child. That's when he said, 'You're in for a life of misery. There's nothing anybody can do.'"
"He wouldn't even meet Meg," Elizabeth interrupted. "He wouldn't reappoint us." His only contribution was to direct the Scanlons to the Child Development Unit at Pittsburgh's Children's Hospital. The Scanlons were invited to join a parent support group which met once a week and to take part in behavior modification training sessions. Many of the approaches and techniques were effective for a "honeymoon period," a few weeks of euphoria when they believed they had discovered a way of reaching and controlling Meggan, but none—stars on the wall or money in the bank as incentives, special privileges for special behavior—was self-sustaining.
There was some solace, however, in being with other parents who were enduring similarly frustrating and confusing challenges with their own children. "You're almost afraid to meet other people in the same boat because you think something's got to be wrong with them. And if something's wrong with them, then it stands to reason something's wrong with you," said Tom. "But the others were nice and normal. We cared a lot about our kids."
Eventually the Scanlons entered family therapy with Dr. William Cohen, a developmental pediatrician, the theory being that the entire family had to learn to deal with Meggan since changing Meggan's behavior did not seem to be in the cards. Family therapy was useful in that "it kept us married," said Elizabeth, "because people do tend to blame each other in child-rearing situations." But as far as dealing with Meggan, the best the Scanlons could achieve was a series of honeymoon periods followed by dashed hopes. It was an inescapably vicious circle.
By the time she was thirteen, Meggan had discovered sex and was becoming promiscuous. Her interest in boys was obsessive; in public, she would seek out the most appealing male in the room—sometimes someone twice her age—and encourage him, sometimes with Elizabeth and Tom observing. A twenty-seven-year-old man she had approached pursued her home from the library one day; the boy Meggan had befriended at a campground during a summer vacation wanted the family to bring their camper to his house on New Year's Eve to shoot off their guns. "He called us regularly for years, and we would tell him not to call back—but Meggan insisted on phoning him," said Elizabeth. Meggan approached a whole range of characters. "She goes up to people in wheelchairs and asks what's wrong with their legs.
"You just never know what to expect. I was thinking the other day about that English teacher who asked Meggan to take a test. Meggan refused and cursed her out. The teacher said, 'I bet your mother would have something to say if she knew the way you were behaving.' And Meggan told her, 'No, my mother allows me to talk like this.'
"So the woman called me at home that night and said, 'In thirty years of teaching, no one has ever spoken to me the way your daughter did. And she said you don't mind.' I said, 'Give me a break. Of course I mind. That couldn't be farther from the truth.' We are horrified by her ongoing behaviors because we have been her favorite victims."
Meggan would often telephone her parents and ask them to pick her up, but when they arrived at the appointed time and place, she would not be there. Once they were to meet at a local park. "We looked everywhere. We went around the block. We hiked the trails. We phoned people she knew. The early evening turned to the pitch black of night, and we felt as if we were living a nightmare. I finally said to Tom, 'We have no choice. We have to call the police.' All the while, I couldn't stop thinking about what people would say. I had this vision of myself on the eleven o'clock news, holding a picture of Meggan and facing a reporter demanding: 'Aren't you her mother? Don't you know where she is supposed to be?' And there I am, the most irresponsible, complete failure of a parent since the beginning of time, without any answers." Tom eventually found Meggan exactly where she had promised to meet them. "According to Meggan, she had been there all the time—waiting for us."
In most matters, Meggan was generally unreliable. Whatever time she promised to come home after school or meeting a friend was disregarded without a moment's hesitation. When confronted, Meggan would lie, often making up conflicting stories to satisfy whatever questions Tom, Elizabeth, or her teachers might ask. It did not seem to matter that everyone knew she was lying—Meggan would defend herself with indignant passion. When it became inescapably evident that she was at fault, Meggan would suddenly become contrite and apologetic, admitting guilt, assuming responsibility, and suggesting severe punishments to compensate for her behavior. Meggan would agree to any punishment; it didn't matter, for she refused to comply with any of them. Meggan passionately resisted any attempt to control her life.
Excerpted from Stuck in Time by Lee Gutkind. Copyright © 1993 Lee Gutkind. Excerpted by permission of OPEN ROAD INTEGRATED MEDIA.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Meet the Author
Lee Gutkind has been recognized by Vanity Fair as “the godfather behind creative nonfiction.” A prolific writer, he has authored and edited over twenty-five books, and is the founder and editor of Creative Nonfiction, the first and largest literary magazine to publish only narrative nonfiction. Gutkind has received grants, honors, and awards from numerous organizations including the National Endowment for the Arts and the National Science Foundation. A man of many talents, Gutkind has been a motorcyclist, medical insider, sports expert, sailor, and college professor. He is currently distinguished writer in residence in the Consortium for Science, Policy, and Outcomes at Arizona State University and a professor in the Hugh Downs School of Human Communication.
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