Looking for Light in the Mental Health Care Wilderness

Paul Raeburn writes poignantly of his experiences as a father helping raise three children, two of whom suffer from mental illness-a son with bipolar disorder and a daughter with depression. His account will elicit a shudder of recognition from clinicians with institutional or agency experience and will resonate with the many parents struggling to get help for distressed children from managed care and the medical profession.

Raeburn’s son Alex, a fifth grader, “detonated” one day upon learning that his art lesson had been cancelled. Screaming in fury, he ran through the halls at school, smashing the glass on a clock with his fist, barreling through the front door, and leading the school staff and police officers on a chase through the neighborhood. The cops wrestled him down, yelling, punching, and kicking, packed him into a squad car, and drove away.

The accounts of this incident and of the many that follow are replete with details familiar to those who work with bipolar children:

seizurelike rages that give way to exhaustion, sleep, and a subsequent total lack of recall
agitated or rambunctious behavior in class
oppositionality and reckless defiance
risky and rebellious impulsivity
threats to kill
a mysterious decline in academic abilities despite superior intelligence
dark, brooding malevolence interspersed with creativity, brilliance, and sweetness

With the skepticism of a veteran observer, Raeburn traces the family’s journey through a maze of hospitals, physicians, therapists, and medication cocktails. Just as age, maturity, and possibly blind luck seem finally to be allowing Alex to regroup, the Raeburns’ daughter, Alicia, then in sixth grade, becomes symptomatic and is found to be swallowing handfuls of pills and cutting herself. Once again the family is driven back to the hospitals and practitioners who worked with Alex.

Through the years the Raeburns continue to find the results of treatment frustrating and at best mixed-a pharmacological cornucopia, substance abuse, involvement with the juvenile justice system, and therapists who blame parenting skills, intramarital conflict, and, in Alicia’s case, the trauma of rape rather than brain chemistry. Perhaps inevitably, given the severity of the stressors, the Raeburns’ marriage dissolves. The parents go their separate ways. Raeburn writes unflinchingly about the loss of his marriage and his own experience of psychotherapy.

Formerly a senior writer and editor at Business Week with years of experience covering science and medicine, Raeburn is no stranger to research. He has mined his family’s medical records and has interviewed-and quotes-not only Alex and Alicia but also their brother, Matt, and other parents and children. He writes:

As I began the research for this book, I became increasingly aware of the scandalous disregard with which we treat our mentally ill children. Children and adolescents with psychiatric disorders are among the most neglected and mistreated members of our society. Of the millions of American children with emotional problems, only one in five receives any medical care… But the problems with mental health care cut across the economic spectrum… Treatment of children’s psychiatric disorders is often abysmal. The diagnosis is missed. The children are given the wrong drugs, or the right drugs in the wrong doses. They are offered little or nothing in the way of counseling and psychotherapy. They are admitted to psychiatric hospitals repeatedly, and discharged under the orders of insurance companies after only a few days or a week, long before a diagnosis can be made or an effective treatment established. Many of the few children receiving care lose it abruptly when their insurance runs out, which happens much sooner for mental illness than it does for diabetes, heart disease, or any other ailment. Some parents are forced to give up their jobs to become full-time care managers for their children. Some lose their jobs, because they can’t get their work done while they are being called away to emergency rooms, school classrooms, police stations, hospitals, and juvenile detention centers to attend to their children.

Convulsed by the torment of their children’s illnesses, many parents attempt to conceal their struggle and out of shame or embarrassment. But as Raeburn so accurately observes, the medical system and the nation are failing us all. The suffering of sick children amounts to a public health crisis that demands attention: “The longer the epidemic remains hidden, the longer it will continue.”

This wise and informed account of the horrors of medical care for mental illness among some of our youngest citizens and their families is must reading for mental health professionals and parents with troubled children. “What we found,” Raeburn says, “was a splintered, chaotic mental health system that seemed to do more harm than good.” Many therapists will readily agree. Now is the time for us social workers, parents, and ordinary Americans to take action. By failing to respond to the needs of the nation’s children, after all, we jeopardize our collective future. In the process, we disrespect the children we once were.