12
“You wonder all the time:
Are you helping or harming your child?”
—JASMINE’S MOM (2009)
There are an endless number of stories of medicated children that can be told, and as I worked on this book, each visit to a place where such children can be found—to a family’s home or to a foster care provider or to a psychiatric hospital—offered at least a brief glimpse of this new society we have created in the past thirty years. There are, of course, many parents who will tell of how their children have been helped by psychiatric drugs, and given the spectrum of outcomes that occur with this paradigm of care, that is undoubtedly true (at least over the short term). But this book is about the epidemic of disabling mental illness that has erupted in our country, and so the stories that follow tell, at best, of ambivalent long-term outcomes, and of how diagnosis and treatment during childhood may lead to a life of disability.
Lost in Seattle
I met the young woman I’ll call Jasmine for only a short time, and even that brief encounter left her visibly agitated.* Born in 1988, Jasmine resides today in a somewhat dilapidated group home for the severely mentally ill in a suburb of Seattle, and even as her mother and I approached the facility, we could see Jasmine through a window, pacing back and forth. Once we stepped inside, Jasmine took once glance at me and quickly retreated, huddling next to the wall, very much liked a frightened creature of the wild. She wore jeans and a light blue jacket, and she also kept her distance from her mother—Jasmine won’t let anyone hug her now. We drove in two cars to a nearby Dairy Queen, as Jasmine would not have been willing to go if I had been in the car with her, and after we got there, Jasmine stayed in the backseat, staring straight ahead and rocking back and forth. “If she ever speaks again,” her mother says quietly, “she will have quite the story to tell.”
Photos of Jasmine as a young girl are a good place to start her story. Her mother had shown them to me earlier, and they all told of a happy childhood. In one, Jasmine is joyfully lined up next to her two sisters in front of a Disneyland ride; in another, she is showing off a gap-toothed grin; in a third, she is playfully sticking out her tongue. “She was very smart and funny, pretty much the light of our lives,” her mother recalls. “She would be outside playing, riding her bike up and down the street, just like a typical kid. She would even go around to the neighbors and tell them she would sing ‘Row, Row, Row Your Boat’ for fifty cents. She was such a hellion—you can see in these photos how spunky she was.”
All was fine in Jasmine’s life until the summer after fifth grade. Because she still occasionally wet her bed, she was anxious about going away to camp, and so a doctor prescribed a “bed-wetting” pill, which happened to be a tricyclic antidepressant. Very quickly, Jasmine became agitated and hostile, and one afternoon she told her mom: “I’m having all these horrible thoughts. I feel like I’m going to kill people.”
In hindsight, it is easy to see what was happening to Jasmine. Her extreme agitation was a sign that she was suffering from akathisia, a side effect of antidepressants closely linked to suicide and violence. “But nobody ever asked about whether the drug might have triggered the homicidal ideation,” her mother says. “I didn’t learn that imipramine could do that until years later when I went on the Internet.” Instead, Jasmine was referred to a psychiatrist, who diagnosed her with obsessive-compulsive disorder and bipolar illness. He put her on a drug cocktail composed of Zoloft, Luvox, and Zyprexa, and by the time she entered middle school that fall, she was a changed person.
“It was horrible,” her mother says. “She gained over a hundred pounds on Zyprexa, and she is petite, five feet, three inches tall. Kids who knew her from elementary school said, ‘What happened to you?’ Boys began calling her ‘the beast.’ She ended up with no friends, and she would cry and cry, and ask to eat lunch in the principal’s office to stay out of the cafeteria.” Meanwhile, Jasmine’s rages at home continued, and her psychiatrist upped her dosage of Zyprexa so high that her eyes would roll up into her head and get stuck. “It was like she was being tortured. She would lie on her bed and scream, ‘Why is this happening to me?’”
Eventually, after the Zoloft was finally withdrawn, Jasmine stabilized fairly well on a combination of Zyprexa and Depakote. Although she rarely socialized with classmates, she did well academically, and during her first years in high school, she regularly earned A’s and kudos for her photography and artwork. She immersed herself in volunteer work, too, helping out at a humane society, a senior center, and a food bank, her school giving her an “unsung hero” award for this work. She had come to accept that she was bipolar, and even made plans to write a book that would help other teenagers understand it. “She used to tell me, ‘Mom, when I graduate from high school, I am going to stand up and ask, Has anybody ever wondered what happened to me?’ She was so brave.”
Toward the end of her junior year, Jasmine read on the Internet that Zyprexa could cause weight gain, hypoglycemia, and diabetes. She suffered from the first two of those problems, but when she asked her psychiatrist about Zyprexa’s side effects, he dismissed her concerns. Enraged, Jasmine “fired” him, and in June of 2005, she took herself off both medications, stopping them rather abruptly. Ten days after she took a final dose of Zyprexa, she was on an excursion with her mother when she suddenly turned ashen, sweat beading up on her lip. “This is really bad,” she muttered. “Mom, fight for me.”
Jasmine has been more or less lost to the world ever since. By the time they arrived at the hospital, Jasmine was screaming and tearing at her hair. She was deep into a withdrawal psychosis, and doctors began giving her one powerful drug after another, trying to get it to abate. “They put her on eleven medications in thirteen days, which essentially fried her brain,” her mother says. Jasmine began cycling in and out of hospitals, and every time she was discharged home, it ended badly. At times, she was so psychotic that she would call the police to tell them that she was being kidnapped or that men were building bombs in her front yard. On several occasions, she “escaped” from her house and ran screaming into the streets. Another time she kicked and punched her mom; afterward, she ripped a soda can open and slashed at her wrist. “This is the most psychotic person we have ever seen in the history of this ER,” hospital staff told Jasmine’s mom after one such episode.
In late 2006, a doctor put Jasmine on a single antipsychotic, Clozaril, and that led to a brief respite. Although Jasmine rarely spoke, she calmed down and entered a school for disabled children. At night, her mother read to her for hours, seeking to nurture the spark of sanity she now saw in Jasmine. “I also noticed that if I sang to her, like to an Alzheimer’s patient, she would sing back, communicating through singing.” But in early 2007, Jasmine suffered another severe bout of psychosis, which ended with her screaming in the middle of a busy road. “There is no hope for her,” doctors said, and soon Jasmine was placed at the residential facility, where today she passes her days, shying away from contact with other people and, except for an occasional word now and then, mute.
“The doctors tell me she was always going to be schizophrenic,” her mother says. “But no doctor ever asked about this history, about what she was like before she was put on drugs. And you know what’s so hard to accept? We came in for help that summer when she was eleven years old for a minor problem that had nothing to do with psychiatry. In my mind, I can hear her laughing, like she was back then. But her life has been stolen away. We’ve lost her, even though her body remains. I see every minute what I’ve lost.”
Ambivalent in Syracuse
Senior year was a good time for Andrew Stevens. Diagnosed with ADHD and put on medication when he was in first grade, he’d had up-and-down times in school until his senior year. But then he took a course in auto mechanics, and bingo, he excelled in a way he never had before. “I’m in the zone,” he explains. “I enjoy it. It doesn’t feel like school.”
On this afternoon, Andrew, who is slight of build and perhaps five feet, six inches tall, looks very much like the skateboarder he is: short-cropped hair, black earring, and wearing a T-shirt, shorts, and tennis shoes splashed with a kaleidoscope of colors. I had met his mother, Ellen, a year earlier, at a conference in Albany, New York, and she had expressed a sentiment that, I thought, neatly summarized the moral aspect of our society’s medicating of youth: “Andrew has been a guinea pig for the medical field,” she’d said.
Very early on, she and her husband had realized that Andrew was different from their other two children. He had speech problems; his behavior seemed eccentric; he had “rage issues.” In first grade, he was so wound up he regularly needed to go into the hallway and bounce on a mini-trampoline in order to refocus. “I remember crying when he was diagnosed with ADHD, and it wasn’t because my kid was labeled,” his mother says. “It was, ‘Thank God, we know something real is going on with him and they know how to help him. It’s not our imagination.’”
Although she and her husband worried about putting Andrew on Ritalin, doctors and school authorities led her to believe that she would be “remiss as a parent” if she didn’t give him the medication. And at first, “it was like a miracle,” she says. Andrew’s fears abated, he learned to tie his shoes, and his teachers praised his improved behavior. But after a few months, the drug no longer seemed to work so well, and whenever its effects wore off, there would be this “rebound effect.” Andrew would “behave like a wild man, out of control.” A doctor increased his dosage, only then it seemed that Andrew was like a “zombie,” his sense of humor reemerging only when the drug’s effects wore off. Next, Andrew needed to take clonidine in order to fall asleep at night. The drug treatment didn’t really seem to be helping, and so Ritalin gave way to other stimulants, including Adderall, Concerta, and dextroamphetamine. “It was always more drugs,” his mother says.
Meanwhile, Andrew’s success in the classroom fluctuated according to the talents of his teacher. In fourth and fifth grade, he had teachers who knew how to work with him, and he did fairly well. But his sixth-grade teacher was impatient with him, and Andrew’s self-esteem took such a nosedive that his mother homeschooled him the following year. Andrew’s anxieties worsened during this period, and often he would be “hyperfocused,” worrying all the time that his mother might die. He also was notably smaller than his peers, and his parents thought the drugs were probably curbing his growth. “That has been the most frustrating part. I never know what is my son and what is the drug,” his mother says.
Today, her ambivalence about the medications is such that she wishes she could turn back the clock and try a different tack. “My Andrew is not a circle or a square, he is not even a triangle,” she explains. “He is a rhombus trapezoid, and he will never fit into those other molds. And I do think that if we had never put him on medicine, he would have learned many more coping mechanisms, because he would have had to. And we should be able to help kids like Andrew without making them feel so different, without suppressing their appetite, and without worrying about the long-term effects of the drugs—all the things I am sitting here worrying about.”
When Andrew was younger, he was allowed “medication breaks” now and then, and when I ask him what that was like, he recalls how nice it was to fall asleep without having to take clonidine. Being off meds, he says, “feels less constricted, more free.” Still, he tells me, he is about to graduate from high school, and he has ended up at a good place. He has a girlfriend, he enjoys skateboarding and playing the guitar, and thanks to the auto mechanics class, he now has career plans, as he intends to one day open his own garage. “It’s hard to think back to a time when it could have been different,” he says, shrugging, thinking about his life on medications. “I don’t think there was a right or wrong choice—this is just how it’s been.”
If You’re a Ward of the State, You Must Be Bipolar
The medicating of foster children in the United States took off in the late 1990s, and so I thought, in order to gain a perspective on this phenomenon, I would visit with Theresa Gately. She and her husband, Bill, took ninety-six foster children into their Boston home from 1996 to 2000, and thus she personally witnessed this change in how our society treats foster kids. The first children that Social Services sent them weren’t medicated, but by the end, “it felt like all of them were on psych drugs,” she says.
Over the course of several hours, we sat on her front porch, which looks out over a busy street in a fairly rough part of Boston, and nearly everyone who walked by waved and affectionately shouted hello, no matter what their ethnicity. Theresa Gately is a thin woman with straw blond hair, and she has her own history as a foster child. Born in 1964, she was sexually abused by her stepfather, and she turned so defiant as a teenager that she landed in a Maryland psychiatric hospital. There she was put on Thorazine and other neuroleptics, and, she said, it wasn’t until she started “tonguing” the drugs—pretending to take them while nurses were watching and then spitting them out—that her head started to clear. However, she isn’t “anti-medication” at all, and during a difficult time a few years back, she found an antidepressant and a mood stabilizer to be extremely helpful, and she remains on those drugs.
As a foster mother, Gately was required to follow “medical advice” and give psychiatric medications to the children who arrived on them. Most of the children were on cocktails, and it seemed to her that the drugs were primarily being used to make the children quieter and easier to manage. “One young girl, Liz, was so heavily medicated that she couldn’t think at all,” she recalls. “You would ask her if she wanted a pork chop and she wouldn’t answer.” Another was “almost mute when she came to me. The last thing you need to do is give somebody who already doesn’t talk more drugs.” Theresa ran through the histories of several more of her foster children, concluding that “maybe nine to eleven [of the ninety-six children] needed to have the drugs and were being helped.”
She has kept track of a number of the ninety-six children, and as could be expected, many have struggled mightily as adults. Had she, I wondered, noticed a difference in the fate of those who stayed on the drug cocktails, versus those who stopped taking them?
“When I look back on the kids that stayed on the drugs and those who got off, it is the ones that are off that are the successes,” she says. “Liz should never have been on the drugs. She got off the drugs and is doing great. She is a full-time student in nursing school and almost ready to graduate, and is about to get married. The thing is, if you get off the drugs, you start building these coping mechanisms. You learn internal controls. You start building these strengths. Most of these kids have had very bad stuff happen to them. But they are able to rise above their past once they are off the medications, and then they can move on. The kids who were drugged and continue to be drugged never have that opportunity to build coping skills. And because they never had that opportunity as a teenager, as an adult they don’t know what to do with themselves.”
Hers isn’t a scientific study. But her experience does offer a peek into the toll that the medicating of foster kids is taking. Most of those who stayed on the drugs, she says, ended up “filing for disability.”
Like Theresa Gately, Sam Clayborn, who is a social worker in New Rochelle, New York, can tell from personal experience what it is like to have been a foster kid in the United States. When he was born in Harlem in 1965, his mother was unable to take care of him, and by age six he was living in a residential group home. We met in his apartment in Croton-on-Hudson, and very quickly he put things into a historical context. “They weren’t so hot on psychiatric diagnoses back then,” he explains. “They were more into beating your ass, restraining you, and just throwing you into an empty fucking room. I’m glad I grew up when it was like that rather than what it is like today, because if I grew up now, I’d be fucking drugged up. I’d be doped out and zonked out.”
For the past two decades, he and his partner Eva Dech have worked as advocates for foster children and poor youth in Westchester County. She also had a tough childhood, which included a stint in a mental hospital where she was forcibly medicated, and they see a racial aspect to this medicating of foster children. Starting around 2000, rates of black youth diagnosed with bipolar disorder soared, and based on hospital discharges, they are now said to suffer from bipolar disorder at a greater rate than whites.1 The diagnosis provides a rationale for medicating the kids, and that in turn puts yet one more burden on them, Clayborn believes.
“The Tuskegee syphilis experiments were nothing compared to this. That’s mild shit compared to what they are doing to black kids today. The pharmaceutical companies and the government are fucking in cahoots, and they are doing a wicked dance with a lot of people’s lives. They don’t give a fuck about these kids. It’s all about capitalism, and they will sacrifice all the niggers in the hood. We are damaging these kids for life, and the majority of these kids will never rebound. These kids will be destroyed and they are going to make the SSI rolls more overwhelmed.”
One of the area youth that Clayborn has mentored is Jonathan Barrow, who had been splayed out on the living room floor during our conversation, half sleeping and half listening. Born in 1985 in Harlem to a mother on crack, Jonathan bounced around as a child, eventually ending up at his grandfather’s home in White Plains. At age seven, he was diagnosed with ADHD and put on Ritalin. In junior high, he started becoming rebellious and got into a few fights, and that led to a diagnosis of bipolar disorder and a prescription for Depakote and Risperdal. Up until that time, Jonathan had been an active adolescent who spent most of his free time on the basketball court, but now he began spending most of his time “in his room isolated,” Clayborn says. He went onto the SSI disability rolls before he turned eighteen, apparently “severely impaired” by this bipolar illness, and he remains on SSI today. “I’m doped up,” Jonathan explains, still somewhat heavy-lidded from his afternoon nap. “I don’t like it. It makes me sleepy and feel like a dope fiend.”
At this, Clayborn rose from his chair, more agitated than ever. “This is happening to a lot of the brothers today, and once they are on the medication, it takes them away from themselves. They lose all the willpower to struggle, to change, to make something out of themselves and have success. They succumb to the chemical handcuffs of the motherfucking medications. It’s medical bondage is what it is.”
Not long after that interview, I attended a meeting of the Statewide Youth Advisory Council at Westborough State Hospital in Massachusetts. The council is composed of young adults who entered the mental health system before they were eighteen, and it provides advice to the Massachusetts Department of Mental Health on what it can do to help teenagers with psychiatric problems thrive as adults. In 2008, the coordinator of the council was Mathew McWade, who was first diagnosed when he was in the seventh grade, and it was he who made my visit possible.
At the meeting, I went around the table and asked everyone how they had gotten into the system. I thought I might hear stories of kids who were first put on a stimulant or an antidepressant and then moved on to a bipolar diagnosis, and while there was some of that, several men in this racially mixed group told of yet another societal route to psychiatric disability.
When Cal Jones* was sixteen years old, he had gotten into a violent argument that ended with his being treated in the emergency room at Children’s Hospital in Boston. There he told ER staff that he “wanted to kill the other kid,” a sentiment that earned him a trip to a psychiatric facility, where he was diagnosed with bipolar illness. “They didn’t run any tests,” he says. “They just asked me a bunch of questions and started me on a bunch of medicines.” Since then, he has been hospitalized twenty-five times. He doesn’t like antipsychotics, and so he regularly stops taking them when he is discharged, preferring to smoke marijuana instead, and inevitably that leads to trouble. “I get arrested and get sent back to the (psych) hospital, and I’m like okay, it’s just a business. The more patients they have, the more the doctors make. But I hate it. I can’t stand it. I feel like a slave in a Nazi camp.”
At least three others at the meeting told similar stories. One young man said that shortly after he graduated from high school in 2002, he got upset over a family matter and smashed the windows of his car. “I was having a bad time. They wanted to label me as mentally ill. I don’t know if I am.” Another explained that six months earlier, after he had committed a minor criminal act, a judge had given him the choice of going to prison or to Westborough State Hospital. “It’s safer in here than in prison,” he says, explaining his choice. A third member of the council said that he had been diagnosed with bipolar illness at age thirteen after “I killed somebody.”
Their stories bore witness to another pathway into the mental health system for poor youth. Delinquency and crime can get them diagnosed, medicated, and routed into a mental institution. While many of the young men on the council were on heavy-duty cocktails, moving about and speaking in a sluggish manner, the one who had told of having killed somebody was now living in the community and not taking any medications. “If the state really wants to help us, it should put money into a jobs program,” he says.
Back to Syracuse
As a last stop, I returned to visit the two Syracuse families—Jason and Kelley Smith and Sean and Gwen Oates—that I had met in the spring of 2008. Families, friends, therapists, and doctors had given the two families conflicting advice about whether they should medicate their child, and faced with such bewildering advice, the two families had come to opposite decisions.
Jessica
I knew from an earlier telephone conversation that Jessica Smith had been doing well, and when I arrived at their home, she bounded to the door to welcome me, much as she had a year earlier. When she was diagnosed with bipolar disorder at age four, her parents had rejected the recommendations of staff at the State University of New York Health Sciences Center that she be put on a cocktail of three drugs that included an antipsychotic. Today, they have an eight-year-old girl reminiscent of Maurice Sendak’s endearing “Really Rosie” character on their hands. Jessica, who is very much the extroverted child, had recently starred in a school musical. “She just loves it,” her father says, and he pointed to her behavior on opening night as evidence of how much better she had become at controlling her emotions. “She was playing a brainiac, and another girl in the show stole her chair, which she wasn’t supposed to do. We could see that Jessica was upset. But then she let it pass. It showed that she is getting better at de-escalating situations.”
Although Jessica no longer sees a therapist, “there are still struggles,” her mother says. “She still has a hard time with groups, with playing with more than one kid at a time. And she will still lash out if someone hurts her feelings. She wants to be the boss, and she can be loud and boisterous. But the kicking and biting is gone.”
Adds her father: “She has a big personality, but that is like others in my family. I was the same way. I was very loud. I wouldn’t sit still. And I turned out all right.”
Nathan
Nathan Oates had gone through a more topsy-turvy twelve months. I had called his mother several times during the year, and in the summer of 2008, Nathan—who had been diagnosed with ADHD at age four and subsequently with bipolar illness—had been doing well. He took Concerta for the ADHD and Risperdal for the bi polar disorder, and that summer he discovered that he “loves track,” his mother told me. “They are teaching him how to do hurdles and the long jump.” Even more important, his mood swings had become less severe, his hostility toward his sister had lessened, and he was sleeping better, too. “He said he wants to start being more responsible,” his mother said. “He gets up in the morning and makes his bed, and now he is at a point he will take a shower by himself. He is starting to do things without my hounding him. It seems he is kind of maturing on his own.”
This was a heartening report, but that relatively peaceful time ended when Nathan returned to school in the fall. He became quite anxious and moody, and started resisting going to school. The physician’s assistant overseeing his care upped his Risperdal, hoping that would quiet his anxiety. “They are trying to figure out whether his anxiety is bipolar related or a separate disorder,” his mother explained, in a phone interview in early 2009. “The ADHD is fine and under control. If this doesn’t work, they will give him an anti-anxiety medication. They want to make sure that he doesn’t get too lethargic under the higher dose of Risperdal.”
When I returned to Syracuse in the spring, Nathan’s parents were close to despair over the difficulties that he was experiencing. Nathan’s anxiety hadn’t abated, and to make matters worse, he had lost control of his bladder. A few days earlier, his mother had witnessed in heartbreaking fashion how this was affecting her son. “I went to pick him up in school, and he was sitting in the middle of the room at his desk alone,” she says. “It was almost like he was invisible to everybody else. The teachers swear he has friends but he never talks about anybody. There is only one classmate who doesn’t pick on him.” This isolation, his mother adds, followed Nathan into the home. “He stays in his room all the time.”
Nathan’s father remained hopeful that another “medication adjustment” would help his son. But beyond that, both parents confessed that they were at a loss about what to do. The psychologist who counseled Nathan was running out of ideas; the school wasn’t doing much to alleviate Nathan’s severe anxiety; and their families and friends didn’t appreciate how difficult this all was. “I feel so alone in this,” his mother says. “It stinks. It’s wearing. It’s exhausting. I cry for him. I just don’t know what to do anymore. I don’t know how to help him.”
Before I left, Nathan came down from his room, and he shyly showed me a few of his favorite possessions, including a Star Wars helmet. He told me that Zachariah was his best friend (the one classmate who didn’t tease him), and then he taught me how to fold a piece of paper into an airplane, which he sent flying around the room. “I like to make movies” with a video recorder, he says, and eventually I quizzed him on a couple of subjects he loves. “The Titanic sank in 1912,” he informs me, and after that he proudly identified various bones in the human body—he is fascinated with drawings of skeletons. “His teachers all love him,” his mother says, and at that moment, it was very easy to see why.
* Since “Jasmine” could not give consent to having her name used, her mother and I agreed to keep her identity hidden. I’ve also kept her mother unnamed for that same reason.
* Cal Jones is a pseudonym. Hospital staff asked that I not reveal the names of the hospitalized patients.