Bipolar Disorders A Guide to Helping Children & Adolescents By Mitzi Waltz 1st Edition December 1999 (est.) 1-56592-656-0, Order Number: 6560 380 pages (est.), $24.95 (est.)

Preface

There are two sides to every story, and the tale of my daughter's experience with childhood-onset bipolar disorder is no exception. The difference in age, experience, priorities, and perceptions between child and parent can create two very different versions of the same events.

Carmen knew at a very young age that her brain worked differently--and I did not. She sometimes saw things that weren't there and was afraid. As a young single mother, I dismissed her hallucinations as bad dreams, wiped away her tears, soothed over her moods, and relished her joy for life. She was a lovable, bright, pretty girl with a passionate disposition that seemed no more important a quirk than her enthusiasm for the Barbies and girlish clothes I had disdained in my tomboy childhood. That was just Carmen: quick to laugh, quick to cry, always dramatic, curious, and on the move.

A neurological difference becomes a neurological disorder gradually. It can happen so quietly that parents are shocked when difficult symptoms emerge, even though problems have been bubbling under the surface for years. As Carmen came closer to puberty, others were quicker to notice than I. A concerned fifth-grade teacher thought an alternative school known for its creative bent might be a better fit than our neighborhood elementary, so we transferred her. Carmen's new stepfather raged over her sassy, smart-mouth attitude and bouts of tears, so we sought marriage counseling. At her new school, reports of misbehavior filtered home--fighting, moodiness, crying, oppositional behavior in the classroom, rumors of an eating disorder--so we stuck up for our daughter, angry that the school blamed our parenting skills and stepfamily blending problems.

But as such things progress, there comes a time when you can no longer deny that something is wrong. Perhaps you are at that stage right now: your child has just been diagnosed with a bipolar disorder, or you fear that he or she will be. Perhaps you're a professional who works with children and teens affected by these extremes of mood and emotion. I hope that my experience--my daughter's experience, our family's experience--can help you understand and cope with the trials you face.

In the rest of this preface, the words in italics are Carmen's own.

Maybe the first thing we should have noticed was that Carmen saw the world differently than most people. She took things very personally, and always assumed the worst (therapists call this "catastrophizing"--thinking of the worst possible outcome in any situation, and fully expecting it to occur).

To be quite honest, I have always been pretty self-absorbed, in the sense that everything going on in the world that I know of is affecting me somehow. Even if that situation is completely unrelated to me, I still have the knowledge of it, therefore it affects me. I can't remember how many times I was told: "The world does not revolve around you, Carmen."

Maybe it was this way of thinking that made the mood swings so hard on me. I wanted them to come from something else. I was too ready to blame everyone else around me. I over-analyzed every thought in my head, and found some way for it to relate to a situation in my life.

I had known for a long time that Carmen had very definite mood swings that seemed to come and go suddenly, but I never thought of them as a symptom of mental illness. I groped around for an explanation (a bad day at school, too much sugar, puberty, chaos on the home front), and I could usually latch onto something. What I now know is that hypomania was such a frequent state for her that it had come to seem perfectly normal. And even though I now know what her hypomania can become when unchecked, I would never want to take this away from her.

Realistically speaking, who takes notice when you're happy? Happiness is socially acceptable. Sure, it's true that when I'm happy it can be a bit overwhelming, but after the sadness I'd felt, any form of good feelings was welcome.

In a weird way, having bipolar disorder is almost like having two personalities. One is great: motivated, happy, and entirely energetic. Wonderful things can be accomplished in this mindset. However, no matter how fantastic it seems, there are always down sides. For one, you have no idea why you feel this way, which can ultimately suppress any of the positive aspects, and two, it doesn't last forever.

It was depression that finally made me realize something was wrong--but I didn't recognize it as depression at first. Neither did Carmen's teachers, the school counselor, or the first therapist she saw.

I thought I knew depression intimately. I've suffered several episodes of depression myself, including a fairly severe postpartum depression after the birth of Carmen's younger brother. To me, depression meant feeling bleak, listless, self-pitying, and tired. What was I to make of this child who was irritable and angry, unable to sleep at night, screaming at me one minute and giggling over the phone with her friends the next? Depression didn't even cross my mind.

Our home became increasingly tense as Carmen moved through middle school. Her morning moods seemed to set the tone for the entire day, and it usually wasn't good. Differences of opinion on how to discipline her almost ended my marriage. And it didn't help that much of my attention was on my toddler, who was showing the early signs of autism (he has since been diagnosed with a pervasive developmental disorder and other neurological problems).

My memories of those early adolescent years are blurred, even though they weren't that long ago. Many hateful words were exchanged, and like most mothers, I've chosen to forget as much as I can. There were fears about friends who might be a bad influence, about smoking, about drugs and alcohol. And emerging from all of it was the clear knowledge that my daughter was in serious trouble. She locked herself in her room most afternoons, barely acknowledging the rest of the family except to yell at us. Her appearance changed, she fought with her old friends, and her school performance slid from stellar to nonexistent.

By high school, Carmen's life was undeniably falling apart. She couldn't even get up in the morning. Nothing was going right for her, least of all school. She dropped out, dropped in again, and worked my last nerve with her dramatic behavior, including running away from home and substance abuse. One evening her brother walked into her room and found her cutting her wrists. I took her to two different hospitals that night in an effort to get her immediate help. She was hospitalized on an adolescent psychiatric ward for a week.

I was first diagnosed with clinical depression. When I received that diagnosis it seemed fitting to both myself and those around me. Depression hits you in different ways. It can be anything from extreme irritation to deep sadness. Sometimes you just want to start crying for no reason. Insecurities build up. The people around you don't seem to be able to relate to you, let alone care, and you end up feeling very alone.

I think the fact that it came out of nowhere is why I felt the need to blame everyone and everything around me. I felt so isolated in my thoughts and feelings that I ended up pushing a lot of people away.

Hospitalization wasn't a quick fix, especially since she was discharged too early, misdiagnosed, and given the wrong medication. There followed two years in which I was afraid we would lose Carmen to the streets. We tried to get a special education program started after she got out of the hospital, but the process dragged on for months. She was never able to re-enter high school successfully. We were faced with continued angry outbursts, and even violent behavior. Still much too young to get a job, she left home and stayed with a succession of friends. All we could do was offer help from a distance, and hang on to that thin thread of hope.

I started using drugs to relieve myself of what was going on in my head. At the time I thought I was just using drugs for fun. But of course it was fun for me not to have to deal with the feelings I was having.

Eventually the drugs stopped doing what they used to. I started seeing what they were doing to the people around me. So I quit. I quit alone. For awhile I sort of used that to keep me happy: if I could do that by myself, then I could deal with everything else by myself. Of course that didn't really work for long, and I sought help.

I was finally diagnosed with bipolar disorder and began taking medication and going to therapy.

It seemed like no one had answers for us. The family counselor we saw emphasized tough love, telling us we shouldn't even see or talk to Carmen unless she promised to come home and obey our rules. My heart said otherwise, and eventually, with help from a counselor more knowledgeable about mental illness, we began to put our family back together. We set ground rules that protected us, without laying down ultimatums. Our relationship was better, but her symptoms were not.

Carmen tried several medications during this period, and each one seemed to be worse than the last.

You can't explain to people how it feels to be on the wrong medication. On Zoloft, I felt like a zombie, like I was not myself at all. My thoughts were really, really slow, and by the time they came out of my mouth they didn't make any sense.

Paxil didn't have as drastic an effect as Zoloft, but I still didn't feel like I was thinking normally. I was just kind of groggy all the time.

On Depakote I was violent and wanted to smash windows. My body felt like I just really needed to punch something--all the time. I was very manic, I needed to move, to listen to lots of loud music, and just scream!

Thankfully, when she finally tried lithium it was successful: in fact, Carmen was eventually so stable that she decided to stop taking it--a typical mistake for a bipolar teen. She has had only one major relapse since, which also responded rapidly to medication. She still experiences milder mood swings and related physical symptoms, particularly anxiety and panic attacks, and continues to look for a medication that can help her weather these better.

Attending talk therapy and addressing a hormone imbalance that was affecting her mood were also important in helping Carmen become more stable. In turn, stabilization has helped Carmen make lasting lifestyle changes on her own initiative. These changes have improved how she feels and functions each day. She is now able to choose and pursue her own goals, including earning her GED, attending trade school, working, living independently, and even studying abroad.

I think living with bipolar disorder is easier if you have a little more structure in what you're doing. I'm very structured in my work schedule. One thing that really improved my symptoms is when I started going to school again and had to get up at the same time every day.

I've been doing fine. I've finished the first part of my education, traveled, and supported myself for over a year now.

I've basically been using this illness as a creative outlet. I can use the good side with work and with friends. However, the other side is still present. I highly doubt that it will ever completely disappear, even with medication. It's something that I'll have to deal with for the rest of my life. And the fact that I have accepted this is what has helped me the most.

Sometimes it's hard for me to let Carmen take full control of her life. Every parent of a young adult worries, but transition to self-sufficiency for a person who has been disabled by illness in the past is especially difficult. I try to maintain a balance between being a resource, and letting her find her own wings. We've made a family plan about how we would handle a serious relapse, and we've taken steps to make sure she has continued medical coverage and good doctors. We've supported her efforts to pursue an education and a career, and although there have been bad days along the way, her decisions so far have shown more maturity than you would expect for someone her age.

As tough as Carmen's experiences over the past six years or so have been, I believe they've also strengthened her in many ways. She has developed compassion for other people's differences, and thought more deeply about what she wants out of life than many adults who are in their mid-20s. She is focused on her strengths rather than her weaknesses now, able to use her creativity and quick mind to reach her goals. We have high hopes for her future--and based on what we've learned, we know that even if new obstacles crop up in her way, we'll be able to get past them together.

I hope this book will help you find that same sense of hope and confidence. It is a compilation of everything I have learned along the way--everything I wish I had known at the beginning of this journey.

A few notes about the text

This book is intended to bring together all the basic information needed by parents of a child or teenager diagnosed with a bipolar disorder. Professionals who work with bipolar youth should also find it useful. The first two chapters provide a broad overview of the entire bipolar disorders family, and explain how they are diagnosed. Subsequent chapters cover family issues, treatment options, dealing with insurance problems and the healthcare system, school, and transition planning for bipolar teens.

The appendix, Resources, lists books, web sites, organizations, special diagnostic and treatment centers, and more to help you find the help your child needs.

Bipolar disorders occur in both girls and boys, so this book alternates between pronouns when talking about patients. Many adults with mental illnesses and their advocates do not like the practice of putting their disability first in constructions such as "bipolar child" or "bipolar patients." These terms are sometimes used in the text, but hopefully everyone reading this book understands that patients are always people first, and that a diagnosis is just an adjective to describe a part of who they are.

Every effort has been made to provide accurate information about resources in the English-speaking world, including North America, the UK, the Republic of Ireland, Australia, and New Zealand. Bipolar disorders are a universal phenomenon, however, and occur in all races and nationalities. Readers in other parts of the world may be able to find local resources and current information in languages other than English on the World Wide Web. Some of the web sites and email discussion groups listed in the appendix to this book can point you toward resources in your part of the world. Simply because this book was written in the US, some information will be skewed toward American readers. Most, however, will be useful to all.

Findings from the latest medical research are presented throughout the text. This information is not intended as medical advice. Please consult your physician before starting, stopping, or changing any medical treatment. Some of the health information provided comes from small studies or is controversial in nature. No endorsement of any particular medical or therapeutic approach to bipolar disorders is intended, and readers are encouraged to carefully examine any claims made by healthcare facilities, pharmaceutical firms, supplement manufacturers, therapists, and others before implementing new treatments.

Throughout the book, you will find the words of other parents and patients. Their quotes are offset from the rest of the text and presented in italics. In many cases their names and other identifying details have been changed at their request.

Acknowledgments

Many teenagers and young adults with bipolar disorders, and more than 20 parents of children with bipolar disorders, took the time to answer questions about their personal experiences. They deserve much of the credit for this book, as their replies guided its structure and contents.

A draft of the manuscript was reviewed by Tomie Burke, a parent of a bipolar child as well as owner and founder of the BPParent listserv, an Internet-based mailing list for parents of bipolar children; Martha Hellander, executive director of the Child and Adolescent Bipolar Foundation and the parent of a bipolar child; Dr. Robert L. Findling, director of the Division of Child and Adolescent Psychiatry and co-director of the Stanley Clinical Research Center at Case Western Reserve University/University Hospitals of Cleveland; Dr. Marv Rosen, a highly experienced child psychiatrist with Network Behavioral Health in Portland, Oregon; Sally Mink, RN, of the Depression and Related Affective Disorders Association (DRADA); parent Stephanie Kirk; and Troy Mott, an adult with bipolar disorder, among others. Their comments and criticisms were invaluable and much appreciated.

The National Alliance for the Mentally Ill has also been a primary, and extraordinarily valuable, resource. Created by parents, this organization gives voice to the concerns of families and patients affected by mental illness. It works in the nation's legislatures, in the media, online, in its excellent annual conference, and in hundreds of community support groups to provide information, help, and hope.

Linda Lamb, Carol Wenmoth, Claire Cloutier LeBlanc, Edie Freedman, and all of the extraordinarily professional editorial and production staff at O'Reilly & Associates have my utmost respect and admiration, as does my agent, Karen Nazor.

And Carmen, who inadvertently introduced me to this topic, gets the most thanks of all, especially for putting up with my nosy questions and busy schedule over the past year.

Mitzi Waltz

If you would like to comment on this book or offer suggestions for future editions, please send email to patientguides@oreilly.com, or write to O'Reilly & Associates Inc. at 1005 Gravenstein Highway North, Sebastopol, CA 95472.

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