Welcome to Childhood Made Crazy, an interview series that takes a critical look at the current “mental disorders of childhood” model. This series is comprised of interviews with practitioners, parents, and other children’s advocates as well as pieces that investigate fundamental questions in the mental health field. Visit the following page to learn more about the series, to see which interviews are coming, and to learn about the topics under discussion:
Jackie Goldstein, PhD, has her doctorate in behavioral neuroscience and retired in 2015 from her post as professor of psychology at Samford University, Birmingham, AL. Her new book is Voices of Hope for Mental Illness: Not Against, With
Jackie shared the following with me:
Though not a clinician, I have visited many mental health programs and consider myself an informed and experienced observer of how mental health problems can affect a family. That experience (those observations) led me to publish a book on the stigma of mental illness (Voices of Hope for Mental Illness: Not Against, With, 2016) and I often hear from parents who seek support and/or advice when they’ve been blind-sided by their child’s diagnosis of a mental disorder.
When their child is first diagnosed (usually in late teens or early twenties), parents invariably hold onto hope that what led to the diagnosis was an acute episode, that successful pharmaceutical treatment will be found and all will be well. But as their children become adults, they learn that most mental health disorders are chronic—treatable and manageable, but not often curable. With that realization, parents naturally wonder what will happen to their children when they, the parents, can no longer care for them, help them manage their treatment, or aid them in dealing with the normal aspects of life—finding a place to live, holding a job.
In fact, the Health Insurance Portability and Accountability Act (HIPAA) of 1996 allows adult patients, if they choose, to block family members from following the course of their treatment. This is not necessarily a wise decision but one that—for better or worse—offers the grown child a greater sense of independence and control of his or her life.
Queries from parents, who have read my book or visited my website, may begin with a desire to move their children to Geel, a Belgium city (featured in my book, a city I have visited seven times) with a centuries’ old history of foster family care for the mentally ill – a city devoid of the stigma of mental illness, where "boarders" can live a meaningful life in an accepting integrated fostering community.
However, I must tell them that this option is not possible for those who are not citizens of Belgium. Then, parents may wonder if a similar place exists in the U.S. – a question that can’t be answered with a simple yes or no. There are exemplary programs in the United States that meet the criteria for success that Geel has achieved, but they are seldom carbon copies. They are developed, using the community’s resources, to meet the needs of their community. Furthermore, Geel’s services are provided through Belgium’s Ministry of Health, and we do not have the same kind of national mental health care system in this country.
Normally the onset of SMI (“serious mental illness,” e.g., schizophrenia or bi-polar disorder) does not occur until the late teens or early twenties, after up to twenty years of parenting and preparing one’s child for the future, anticipating the pride and joy of the child’s success. When symptoms first appear, in the face of too many unknowns, the future is cloudy and parents are often in emotional limbo as various medications are tried and a diagnosis is too long in coming.
When an effective medication is found, there is hope that it will manage symptoms—in the same way that insulin manages diabetes—allowing a meaningful life for the child and a sense of relief for the parent. But a prescribed medication can lose its effectiveness over time, and the search for management must begin anew. Parents of children with SMI may cycle through hope and despair many times. What can they do to prepare themselves for the winding road ahead, a road spotted with potholes lurking around any wind in the road?
Two "words" (concepts) are critical: information and support. But those two words are filled with possibility and are not sought or obtained in a simple manner. What kind of information is needed? NOT the ability to identify your child according to their diagnosis. NOT believing that knowing the diagnosis will make life as manageable as a diagnosis of (e.g.) diabetes. Control of juvenile onset diabetes is not simple, but it is more easily identified than SMI. Mental health disorders are a "category" of disorder and not even mental health professionals can easily come to a definitive precise diagnosis. There is not a lab test or an imaging technique to provide clues. And treatment can be a trial and error procedure in which it may be months or even years before a successful treatment regimen is established.
Just as mental health disorders are a "category" of disorder, mental health professionals are a "category." You may end up in the office of a psychologist, a psychiatrist, a social worker or, at one time or another, all three. Sometimes they’ll practice in the same office and each can play a significant role in diagnosis and treatment. (You may even start with – are most likely to start with – your general practitioner.) And, thus, the first kind of information you should seek (can most likely be found on the internet) is to become familiar with the various types of mental health professionals, the way in which each type may come to a diagnosis and the kind of treatment each may recommend.
Sometimes more than one treatment type may be called for. For example, a pharmaceutical treatment could be prescribed by an M.D. (psychiatrist). However, the social adjustment necessary to live with a chronic (stigmatized) disorder can necessitate the inclusion of talk therapy. And insurance usually doesn’t reimburse a psychiatrist for talk therapy; but only for medical consults.
What about you, as family members, who are doing your best to understand and cope with an unexpected chronic unknown? The caregiver also needs care. And now the second word: support. Support through talk therapy can be useful, giving the parent a chance to express their frustration and fear, to gain the strength to carry on and make important decisions.
You will also need the same kind of social support that anyone needs in the face of the new and the unknown. If you look at your perspective before you experienced this emotional flash point in your life, you may recall a time when the stigma of mental illness (a sense of fear and avoidance, of "not me") guided your perspective. Your perspective has likely changed now, but the perspective of your friends may still be the same. Where are you to find social support when the topic of mental illness is so often avoided due to myths and misunderstandings?
Social support is available, but you may have to ask for it and explain your need. Perhaps you have friends whom you can trust and count on. Especially useful are friends who will listen and ask questions, rather than give advice.
There are a number of good books that have been written by parents who have faced the challenges you now face. One particularly good book is Crazy: A Father's Search Through America's Mental Health Madness written by former Washington Post journalist, Pete Early, who describes his, and his son’s experience, as a result of a manic episode.
In Perfect Chaos: A Daughter's Journey to Survive Bipolar, a Mother's Struggle to Save Her, mother, Cinda, and daughter, Linea Johnson, in alternating chapters, tell the story of how their entire family – coped with and survived Linea’s bipolar diagnosis and an accompanying suicidal depression. Both of these books are written in the first person, offering a sense of empathy and personal support.
National Alliance on Mental Illness (NAMI) is composed of 1,000 NAMI State Organizations and Affiliates across the country. Many affiliates offer free support and education programs, including speakers whose presentations offer both information and support. A NAMI meeting is a place where those who feel isolated and alone due to mental illness in the family, are able to meet others who have, and continue to, face the same challenges and feelings of isolation. For those who might feel hesitant about attending a meeting, NAMI’s website (https://www.nami.org/About-NAMI) is a good starting place. It will encourage and reassure anyone who is a lost and lonely "beginner."
In summary, do seek information and support from reliable sources. Avoid dramatized TV shows or movies. Do NOT allow yourself to let the uninformed even infer that your parenting is, in any way, to blame for what has happened to your child and your family. And to help you stave off such an unneeded and inaccurate assessment, you may have to avoid those who, in the past have been a source of support in other crises but who may persist in assigning blame now, understanding that their perspective is most likely due to either myths and misunderstandings about mental illness or their desire to help you "fix" the problem even in the face of a sense of your, and their, helplessness.
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