The Price of Silence: A Mom's Perspective on Mental Illness
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The Price of Silence: A Mom's Perspective on Mental Illness
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Overview
Like most of the nation, Liza Long spent December 14, 2012, mourning the victims of the Newtown shooting. As the mother of a child with a mental illness, however, she also wondered: “What if my son does that someday?”
The emotional response she posted on her blog went viral, putting Long at the center of a passionate controversy. Now, she takes the next step. Powerful and shocking, The Price of Silence looks at how society stigmatizes mental illness—including in children—and the devastating societal cost. In the wake of repeated acts of mass violence, Long points the way forward.
Product Details
| ISBN-13: | 9780698161337 |
|---|---|
| Publisher: | Penguin Publishing Group |
| Publication date: | 08/28/2014 |
| Sold by: | Penguin Group |
| Format: | eBook |
| Pages: | 304 |
| File size: | 669 KB |
| Age Range: | 18 Years |
About the Author
Read an Excerpt
INTRODUCTION
You probably don’t know me. But chances are good you’ve read something I wrote. On December 14, 2012, two days after my thirteen-year-old son—let’s call him Michael—was placed in an acute care mental hospital, twenty-year-old Adam Lanza shot his mother, then went to Sandy Hook Elementary School and killed twenty first graders, six educators, and himself. My second thought on hearing that horrible news was probably similar to most people’s first thought. I wanted to rush to my children’s elementary school, to hold my second-grade daughter and fourth-grade son in my arms.
But my first thought was something else. My first thought was, “What if that’s my son someday?” That night, I sat down and wrote my truth. I admitted my feelings of pain and fear and helplessness about my son’s condition and my inability to help him. I wrote about the years of missed diagnoses, ineffective medications, and costly therapies. I expressed my fear at my son’s unpredictable and sometimes violent rages. I shared the pain of watching my son handcuffed, in the back of a police car. Then I posted the essay, entitled “Thinking the Unthinkable,” to my formerly anonymous mommy blog, The Anarchist Soccer Mom.
Here is some of what I wrote:
This problem is too big for me to handle on my own. Sometimes there are no good options. So you just pray for grace and trust that in hindsight, it will all make sense.
I am sharing this story because I am Adam Lanza’s mother. I am Dylan Klebold’s and Eric Harris’s mother. I am James Holmes’s mother. I am Jared Loughner’s mother. I am Seung-Hui Cho’s mother. And these boys—and their mothers—need help. In the wake of another horrific national tragedy, it’s easy to talk about guns. But it’s time to talk about mental illness.
I sent my anonymous cry for help screaming into the Internet abyss. To my surprise, I heard an echo. After I posted the anonymous essay to my Facebook page and encouraged my friends to share it, they did, and so did their friends, in record numbers. The next day, my good friend Nathaniel Hoffman, editor of Boise State University’s online journal the Blue Review and one of the few people who knew about my blog, called me and said, “I want this piece. It’s important.” I readily agreed. “And I want you to put your name on it,” he added. “Until people start putting their names on these stories, they aren’t real.”
Nate’s request made me pause. I was afraid—not of what the world would think—but of what my friends, my coworkers, my community would think. Nate was one of just a handful of people who knew about my ongoing struggles with my son’s mental illness, who knew why I had to miss work so often or why I sometimes cried in my cubicle or cringed when my cell phone rang.
But in the end, I agreed to publish the essay with Nate’s suggested (and better) new title, “I Am Adam Lanza’s Mother.” I discovered that words have power. These were my words, and this is my story.
The Internet response to my cry for help was overwhelming. Before December 14, 2012, my formerly anonymous blog had about 4,000 hits total. Now The Anarchist Soccer Mom has had more than 3 million views and nearly 4,000 comments. The reprint on theHuffington Post (which picked the story up from the Blue Review and the Seattle Stranger) was one of the most popular articles for days. It received 1.2 million likes on Facebook (and 323,000 shares), more than 15,000 comments, 16,800 tweets, and 29,800 e-mails.
People are still talking about it. I clearly touched a nerve in sharing my family’s painful experiences with mental illness. Journalists from Anderson Cooper to Miles O’Brien to Diane Sawyer have asked me to tell our truth. But not everybody gets it. I have learned through this experience that stigma, for children and for families who struggle with mental illness and mental disorders, is still very real.
I’m writing this book for two very different audiences. The first audience knows mental illness and lives with it every day. For this audience—the audience I know best—mental illness is a blond boy with a butterfly, a parent putting a meal on the table after a long day at the office, a patient expressing frustration over a new medication’s unpleasant side effects. This first audience experiences life with mental illness as “normal.” And its members—mothers, fathers, children—cried out in solidarity with me: “You shared my story! Thank you for putting into words something I did not dare to say.”
But I am also writing for a second audience, an audience that is surprised to learn that one in five children in the United States will suffer from a serious and debilitating mental disorder, an audience that believes mental illness is something we still shouldn’t talk about except behind closed doors in private rooms, an audience that is convinced that the sometimes maladaptive behaviors of mental illness are a “choice.” The second audience knows mental illness as a series of hollow-eyed young men flashed on screens above shocking and horrific statistics, body counts in a war with no named enemy except the enemy within. This audience’s primary understanding of mental illness comes from distorted and exaggerated media portrayals rather than from everyday encounters. This audience is afraid.
Make no mistake: I believe based on my own very real and often frightening experiences that people with mental illness, when not properly treated, can be dangerous to themselves and others, with potentially horrific consequences for themselves, their families, and society. When we talk about mental illness, we must also talk about violence, no matter how uncomfortable that conversation is. I shared my own story of frustration and pain in response to a horrific act of brutality that took the lives of innocent children and teachers. While it’s true that people who have mental illness are more likely to suffer violence than perpetrate it, the never-ending threat of unpredictable, senseless brutal acts is what makes the stress of day-to-day life with a child who has mental illness similar to what soldiers in combat experience.
But I also love my son. And I believe that effective treatments exist, and that even more effective treatments are moving from the margins to the mainstream every day. As Michael commented after reading a 2013 article in Smithsonian magazine about the promise of 3-D printing, “Maybe I’ll invent a teleporter that does more than just transport people to where they want to go—it also reads their DNA for mistakes, then fixes those mistakes and prints out a new, perfect copy of the person.”
Maybe. Or maybe we’ll find gene therapies, or medications that actually work, or new modes of therapeutic treatment. Maybe we will take the burden of care for mental illness off the already heavily laden backs of law enforcement and the criminal justice system. Maybe we’ll learn how to provide appropriate educations for children with mental disorders. Maybe we’ll provide meaningful support to families.
I’m writing this book to give a voice to parents of children with mental illness. But I am also writing because I believe that those of us in the first audience have an obligation to share our experiences with the second audience. We have to say, “I have mental illness. My child has mental illness. The woman who cuts my hair or researches my stock-market portfolio, the man who bags my groceries, or teaches my children, has mental illness. And all of us want what any person would want: to live healthy, happy, productive lives.” By sharing our stories, by putting familiar faces to a frightening, misunderstood, complicated disease (or rather, a group of diseases, a cluster of developmental disorders), we can begin to chisel real change from the massive edifice of stigma that has stood too long in the way of effective treatments.
Every minority group in history has had to fight for rights, for recognition, for respect. Less than one hundred years ago, women could not vote. Even twenty years ago, gays were viewed with hostility and suspicion, AIDS as a “homosexual disease.” And yet today, a majority of Americans support gay marriage, and just four years after Proposition 8 promulgated hate in California, the Supreme Court overturned the Defense of Marriage Act and restored equality to a class of citizens that had been denied majority rights.
But in our country, people who have mental illness are still treated like second-class citizens. We treat illness above the neck differently than from the neck down. Certainly no one advocates a return to the days of institutionalization. But when the institutions closed, where did people with mental illness go? The promise of community-based resources to provide much-needed care proved illusory. Instead, today we “treat” those with mental illness or mental disorders, including our children, in prison. And in many underprivileged areas, where the stress of poverty is a pervasive and persistent trigger for mental illness, a “school-to-prison” pipeline has denied millions of children a meaningful future. The bad institutions closed and were replaced by something much, much worse, as mental health advocate and author Pete Earley details so vividly in Crazy: A Father’s Search through America’s Mental Health Madness, which uses his son’s experience with the law to examine how people with mental illness are mistreated by the criminal justice system.
Then when a tragedy like Newtown happens, former National Rifle Association president Sandy Froman (and a host of others) can say things like, “We have to keep guns out of the hands of these insane people.”
Aside: This is not a book about gun rights. I live in Idaho, and we like to hunt here. But as the parent of a child with mental illness, I would never own firearms, let alone keep them in my home. In this one respect, I cannot understand Nancy Lanza, though in other ways, her experiences with her son Adam are hauntingly familiar to me.
This book is not about keeping guns out of the hands of dangerous people, though certainly that question deserves exploration. It’s about making children—and people—less dangerous.
The second audience refused to believe what I wrote about my son when I put my story into the ruthless stockade of public opinion. “You’re telling me that your only option for your son is jail?” one incredulous reporter asked me after my blog post went viral. “There’s no way that can be true.” It was, and it still is in Idaho and in other states. In fact, a 2013 study conducted by the George Washington University Center for Health and Health Care in Schools concluded, “From significant disconnects among the multiple institutions that serve children and their families to chronic financial instability, the children’s mental health system is fragile and at-risk.” In this book, I’ll introduce psychiatrists, lawyers, law enforcement officers, educators, and disability rights advocates who can all witness to the fragility of our current patchwork and costly systems.
I’ll also share stories from other parents who have endured the same societal blame and stigma for their children’s behavior that I have personally experienced with my own son. When I wrote about my experiences with my child in my blog, the second audience blamed me, just as psychiatrists blamed so-called Refrigerator Mothers in the 1950s when children presented with the baffling (then and now) symptoms of autism. As a mother of four who has seen the Mommy Wars from both fronts—I was a stay-at-home mother for thirteen years and have subsequently embraced the world of work with perhaps too much enthusiasm—I actually understand this criticism well. What loving mother would not examine her own parenting, from her history of depression to her failed marriage to her decision to reenter the workforce, and not find herself somehow wanting? When our children suffer—whether it’s mental illness or cancer or allergies—we want to know why, and we naturally start with ourselves as the root cause.
When my painful story went public, I thought that I was the only mother in America who felt the way I did. But I quickly realized that I was far from alone in my struggles to find care, support, and understanding for my son and for myself. This book follows my own journey through the labyrinth of impassive institutions and jargon-ridden systems that parents of children with mental illness and mental disorders must navigate, chasing false promises of hope (this elimination diet, that antipsychotic drug, another behavioral intervention) and finding real promises of treatment and quality of life.
I have divided the journey into stages, using the loosely chronological arc of my son’s life to expose the endemic problems with patchwork systems that form the current pathetic state of children’s mental health services. These systems include hospitals, schools, courts, and detention centers. Each institution requires parents to become versed in an alphabet soup of acronyms: in education—IEP, 504, ADA, IDEA, BIP, AT, CD, DOC, ED, FERPA, FAPE, BA, LRE, OHI, OSEP, OT, PT, SBS; in health care—SMI, ACA, PRN, HIPAA, EMR, NIMH, DD, DSM-5, EBM, EOB. That’s just for starters.
I have mentioned only in passing things that did not directly affect my own family and which have been eloquently covered elsewhere—addiction and substance abuse, for example, which David Sheff writes about in his heart-rending book Beautiful Boy, or depression, for which I could refer the reader to a host of books, though perhaps my personal favorite is Andrew Solomon’s The Noonday Demon.
But the journey starts with me. I did not realize it at the time, but my academic training in Classics (a little Latin, more Greek, and everything and everyone those two languages and cultures touched through the history of Western civilization) prepared me well to be the mother of a son who has both developmental disabilities and a serious mental illness. As a lifelong student of the humanities, I fear that our increasing reliance on science for answers about the brain will cause us to lose our appreciation for the soul. Indeed, the soul’s condition is the traditional purview of the psychiatrist, who by definition is not a mind healer but a “soul healer.”
Our apprehension of mental illness began within the context of stigma; history and religion continue to shape our understanding of mental illness and mental disorders, but they also contribute to the “otherness” of those who have mental illness, perhaps because we are afraid to look in the mirrors they carry and see ourselves. Freudian analysis, though now widely discredited, finds its roots in ancient Greek mythology, in tales of horror that rival our modern media bloodbaths. Consider Oedipus, for example, or Thyestes, who eats his own children, or Medea, the spurned consort who murders her sons when Jason leaves her for another woman.
As a mother who has faced the stigma of mental illness head-on, I believe that we have not quite left the cultural underpinnings that ascribe mental illness to “evil spirits” or witchcraft. Yet in our society’s worthy quest to understand and heal the brain, it is important that we don’t forget the soul—what makes each of us and our experiences unique—or relegate it to a lesser state, viewing the brain as merely another physical organ, to be treated like the liver, the pancreas, the heart.
I spend perhaps more time than the average person thinking about theodicy, the problem of evil in the world. This problem is one that religion seeks to reconcile: if God is good, and if his creations are good, then where does evil come from? Many modern-minded people face the problem of evil and decide to abandon theology altogether. But I have taken Søren Kierkegaard as my model—I have tried to make the leap of faith that Abraham made when he agreed to sacrifice his only son, the miracle child God gave him in his old age. I conceive of mental illness as an explanation for some of the evil in the world, an explanation, but not an excuse. Adam Lanza, James Holmes, Jared Loughner, Dylan Klebold, Aaron Alexis all had explanations for what they did. But explanations are not excuses.
When I poured out my fears about my own son’s mental illness to the world, I wrote, “I am Adam Lanza’s mother,” comparing myself to a mother who knew her son was in trouble but who was unable to get him the help they both desperately needed, with devastating consequences. I wrote this book because I don’t want to be Adam Lanza’s mother—dead. And I don’t want to be Columbine murderer Dylan Klebold’s mother, alive, but haunted by a search for answers to impossible questions.
Increasingly, local governments are holding parents accountable for their children’s moral behavior. But how much control do parents really have? I keep a copy of the second-century-CE Roman emperor Marcus Aurelius’s Meditations on my nightstand. Aurelius, often called “the last good emperor,” was a Stoic, always striving to be in harmony with nature. “Accept the things to which fate binds you, and love the people with whom fate brings you together, but do so with all your heart,” he wrote, words that have given me strength through my most challenging experiences with my son.
Marcus Aurelius’s only surviving son, Commodus, who succeeded him as emperor, was a monster.
I don’t want to wait for Rome to burn, or for another elementary school or theater or political gathering or community college to get shot up, to ask, “Why did this happen?” These horrific acts are the price of silence, the outward manifestation of inward suffering on an epic scale.
I want to ask instead, “How can we help children and families and communities to become less dangerous right now, today?” By asking those kinds of questions before another tragedy occurs, we can improve quality of life. We can decrease dependence on state and federal aid. We can provide new outlets for creativity and productivity of minds that work differently from our own and provide much-needed community support to children and families. Maybe we can even write a happy ending to the mental health crisis in America.
But first, we have to tell our stories. This is mine.
ONE
A DAY IN MY LIFE
The cradle rocks above an abyss.
—Vladimir Nabokov, Speak, Memory
If your child does not have a mental illness or mental disorder, then my normal is not your normal. On the surface, my life may look like yours, but for the one in five American children who will experience a serious and debilitating mental disorder at some point in their lives and for their families, a “normal” day may include a three-hour tantrum, a frightening manic cleaning episode, bullying (both giving and receiving), refusal to wear any clothes with tags or eat any food that is not white (or red, or brown, depending on the child), threats of harm to self and others, visits from law enforcement, and even a trip to the hospital or juvenile detention center.
I’m a single mother with four children and a career in student services at a health sciences two-year college. A typical weekday in my house starts early: I wake Michael up at 6:00 a.m. so he can catch a bus at 6:15 to a special alternative school for children with behavioral and emotional problems—our school district has decided that these children cannot attend mainstream classrooms. The school is on the other side of the valley from my modest town home in the hundred-year-old Collister neighborhood of Boise, an area where roosters still crow and horses are pastured just minutes from State Street, one of the busiest thoroughfares in the area.
If Michael misses his bus, my entire day cascades into chaos. Michael cannot wake himself up—though he almost never loses a game of chess and he studied algebra as a sixth grader, he struggles with day-to-day activities that most of us take for granted, like waking himself up to an alarm, brushing his teeth, or even tying his shoes. Like many teens, he’s not a morning person, and the early hour is difficult for him. Unlike most teens, he can become unpredictably violent at even the most mundane request, as he did one morning when I told him he was wearing the wrong color pants. That morning, he ended up at Intermountain Hospital, the only inpatient acute care mental health facility (other than the Ada County Jail) in my community. That was not a good day.
Michael’s school has a strict dress code: black or khaki pants and a plain dark green, blue, or black shirt. On a good day, he dresses appropriately and takes his medications without argument (he’s currently on four different ones—Trileptal and lithium at night, bupropion and Intuniv in the morning). On a good day, he eats a key lime–flavored yogurt for breakfast or grabs a bagel on the way out the door. He is not allowed to bring books or a backpack in or out of school. Every day starts and ends with a wanding to detect any weapons he might have stashed in his pockets. Because Michael so often finishes his work early, we got special permission for him to bring in outside books to read (usually Harry Potter or Percy Jackson), but that concession quickly became a point of contention with staff when he would retreat into his books rather than do his classroom work, so he lost the privilege.
On a good day, Michael leaves the house at 6:15 for the bus stop, dressed and fed and medicated. On a good day, he participates in his classes and returns home to his day care provider at 2:45. On a good day, I enjoy a pleasant and productive workday free from calls from the school or, worse, the police.
Not every day is a good day.
After Michael catches his bus, I have a few minutes to catch my breath while his older brother showers and gets ready for school. We have to leave the house to take James to his bus no later than 6:55 a.m. James attends an out-of-district charter school that focuses on the medical arts, but he can catch a public school bus just a few miles from our house. I wake up seven-year-old Anna and nine-year-old Jonathan and bundle them into the car, Anna clutching “Blue,” the light blue minky blankie, trimmed in white satin, that my mother made for her when, despite three gender-revealing ultrasounds, I was convinced that I would give birth to a fourth son.
James and I listen to NPR and discuss the news as Anna and Jonathan sleep in the backseat. I drop James off at his bus stop. On a good day, Anna, Jonathan, and I stop at River City, the local café, for a much-needed cup of coffee for Mom and day-old fifty-cent baked treats for the kids. We return home to dress for school and work; when the weather is good and when I can go into work a few minutes late, we walk to school, the oldest school in Boise, a classical studies magnet program where my kids are learning to insult each other in Latin.
I miss those good days. I haven’t been able to walk Anna and Jonathan to school since my blog went viral and a judge determined that their brother was a threat to their safety. On many days since that day, I have wished that I had never shared my “normal” with the world: the consequences of telling my truth were exceptionally painful for my family. In fact, I often tell Michael that I wish he would invent the time machine he is always talking about, so that I could go back in time and change my decision to attach my name to my truth. I am truly an accidental advocate.
On a good day, after I drop Anna and Jonathan off at school, I drive or bike to work, where I spend my day solving other people’s problems, trying to forget that I cannot solve my own. After school, Michael heads to his day care provider, or sometimes I pick him up from school for occupational therapy or therapist or psychiatrist appointments. Anna and Jonathan walk home with their day care provider’s children, who attend the same school. James walks or bikes the two miles home from his bus stop and starts the five to six hours of daily homework his accelerated, college-credit high school program requires.
I pick the children up at 5:30 p.m. Dinner is simmering in the slow cooker or waiting in the freezer for the microwave. We eat together at a crowded table in our small kitchen. Then we work on homework, play video games, practice the piano or violin, and read for a half hour before bed. After the children are down, I usually put in a few more hours of work, writing for local publications to supplement my income, since Michael’s medical care eats up one-fourth to one-third of my take-home pay each month, even with good health insurance.
As I said, on good days, in many respects, my life probably looks quite a bit like yours as I juggle the demands and joys of children and work.
But not every day is a good day.
I cannot predict when a day will not be good. I cannot predict what will trigger a violent outburst.
For bad days, we have a safety plan. Families of children with mental illness know what a safety plan is. It’s a written document, sometimes developed with a physician, a therapist, or their state’s Department of Health and Human Services, that describes what you will do when you’re not having a good day.
Every family who has a child with mental illness must have a safety plan. On my refrigerator, along with a picture of us on the logjam ride at Knott’s Berry Farm from a few spring breaks ago, and the requisite crayon drawings from my daughter, we have a picture of Glassman, a cartoon figure drawn by Michael’s occupational therapist. Glassman is Michael’s alter ego, the Mr. Hyde to his Dr. Jekyll. We also have a list of triggers—Jonathan’s teasing, James’s condescension, Anna’s crying—that can sometimes set Glassman off.
This is what a bad day looks like at my house: rage, police, ambulance. Threats, fear, pain. Promises of revenge. Tears. Hopelessness.
Here’s what I’ve learned from Glassman: I’ve learned to patch holes in walls. I’ve learned to keep my knives and scissors and other sharp tools in a Tupperware container that travels with me in my car, meaning these implements are under my direct supervision at all times. I’ve learned not to take things personally. I’ve learned to maintain a serene, detached calm, though I sometimes wonder if people know just how hard it is to stay calm when your son is threatening to kill himself and you and punching holes in walls and knocking books off shelves. This is why I would never own firearms, not for any reason.
Once a month we check in with a psychiatrist, who manages and tweaks Michael’s complicated cocktail of medications to reflect the diagnosis du jour. Every week, we attend either occupational therapy or therapist appointments to help Michael navigate his world, which I have come to understand is different from mine. I wish I could afford weekly occupational therapy (OT). My insurance company authorizes only twenty OT visits per year and wants Michael to be cured within two months. Unfortunately, this experience is not uncommon for parents of children with mental illness: one insurance company refused to pay for hospitalization of a fourteen-year-old with bipolar disorder, arguing that since she was not likely to get better, the treatment should not be covered.
Because Michael has been hospitalized twice this year alone, my health insurance company has assigned me to a health management and information company, to make sure I’m making “educated choices” about my child’s health care. I have sent them the most current research on juvenile bipolar disorder. I know about my son’s illness. I have to know. Managing his care is a full-time job, on top of my full-time job. And too often, there is no one to help. There are no good options.
WHERE CAN I GO FOR HELP?
On December 12, 2012, I was filling out paperwork again. It’s always the same repetitive, time-consuming, simultaneously mind numbing and guilt-ridden exercise: “When did you first observe . . . At what age did your child . . .” My vision blurred—I was probably crying. I tried not to think about it as the other people in the waiting room tried not to stare. The hospital waiting room was a soothing, neutral tan—carpet, tile, wall paint, upholstery, even the abstract paintings on the walls, as if tan is the signature color of mental health, just the way pink belongs to breast cancer.
The room was calm now that my thirteen-year-old son’s rage was contained beyond the locked, soundproofed doors, where he was carried by three police officers as he kicked and screamed curses, threats, promises of revenge.
One of them, to a police officer: “I wish I had a knife so I could run at you and you’d shoot me dead.”
Another one, to me: “You never loved me. If you put me in the mental hospital, you will take home a corpse in a body bag.”
Every time he says words like these, I know he doesn’t mean any of it. These are almost like lines in a script that we’ve enacted and reenacted over the past few years. But I’d be lying if I said they didn’t hurt. Any parent who has a child like Michael learns early not to take these words personally, though. That day, I hurt physically, too—my body ached from the restraint I’d used to keep him from bolting into oncoming traffic, and there were fresh, purple bite marks on my arm.
“Can I see him?” I asked as I turned in my clipboard with my inadequate answers to baffling questions and, of course, my health insurance card, our ticket to services my son needs.
“Let me check,” the receptionist said. She picked up the phone, pursed her lips, looked at me.
“Probably not a good idea,” she said, hanging up. “He has calmed down some, but he’s still blaming you. He’s not really in a good space. Let’s give him some time. I’ll have the doctor call you later.”
She went over the paperwork—patient codes, parent expectations, visiting hours on Thursdays, Saturdays, and Sundays, phone calls between 6:00 and 8:00 p.m.
I blotted my tears with a tissue, tried to clean up the mascara streaks, tugged my lanyard and badge over my head, and went to work.
I am lucky. Work is a refuge for me. My children sometimes complain I work too much, and perhaps they are right. When I’m at work, I feel like I have some measure of control. I feel safe. The only time I ever feel entirely safe at home is when my son Michael is in the hospital. Many parents of mentally ill children never get any downtime. The exhaustion level alone is something only full-time caregivers can truly understand—every day is a handcart trek across gray treeless plains with no water or shade in sight.
When I called Michael the next day, he was still in denial and threatening revenge. “I know you put me in here because you don’t love me,” he yelled. “You lied to them because you don’t want me anymore.”
His social worker called a few hours later, after interviewing Michael about the incident. “You need to call the police and press charges for battery,” he said, telling me something I’d heard too many times before. “If you don’t get him back in the criminal justice system, we can’t do a whole lot for him once he gets out of the hospital.”
That’s the way Idaho and many other states have chosen to care for children who have mental illness. When your child is in juvenile detention, he or she will be screened for mental illness and disorders. The juvenile magistrate will order a slew of social services under the rubric of Idaho Code, Section 20-511A, with a diversion team to develop a comprehensive treatment plan and coordinate services and care for your child. As long as your child is on probation, you can access these services for minimal or no cost. Michael and I have already been down this road. It’s a shame that the real cost of obtaining mental health care is the devastating gut check of watching a uniformed officer handcuff your child and transport him to juvenile detention facilities in the back of a police car.
Two days later, December 14, 2012, it was a lazy Friday. I got to work ready to tackle a few projects, when my phone buzzed. I smiled to see the picture of my partner, Ed Pack, a kind, bright, always-laughing man who has bravely traded a quiet life with two cats for the barely controlled chaos of four children and their perpetually triple-booked mother.
“Hey, babe,” he said, his voice lacking its usual lilt. “Have you heard the news?”
I opened my Facebook page and saw nothing but sadness streaming from my East Coast friends’ feeds. Twenty children dead. No one knew why. The shooter: a young man named Adam Lanza.
I knew why.
Boise is nestled in foothills that glow golden in the morning sunlight. Every Sunday afternoon, when my kids are in Mormon day care (I am raising them LDS—in the Church of Jesus Christ of Latter-day Saints—as I was raised), I’ve made my own new religious practice of running in those foothills, beneath a sky as blue as true love, through sagebrush- and wildflower-dotted landscape. And every weekday morning, as I drop my kids off at their various bus stops and schools, I look to those hills and recite a psalm to myself: “I will lift up mine eyes unto the hills, from whence cometh my help.” Ancient words, from an ancient prophet whose own son probably had mental illness: “Absalom, O Absalom!” How many parents, through how many thousands of years, have uttered similar cries of anguish for their own children? How many mothers since Eve have buried sons because of violence?
WHAT IT FEELS LIKE TO SEND YOUR CHILD TO JAIL
Two years earlier, on October 6, 2010, my then-eleven-year-old son Michael was arrested and sent to juvenile detention when his father charged him with battery during one of Michael’s terrifying rages. The Department of Corrections staff let me visit my son a few hours after he was processed. My little boy was waiting in a small bare-walled room lit with harsh fluorescent light. We sat on cracked plastic chairs and looked at each other. Michael was pale and scared and looked much younger than his age, drowning in a green T-shirt and baggy pants designed to fit a much larger youth. His lower lip trembled. “Mommy,” he cried, crushing his head against my chest and beginning to sob. I cried, too, silently.
This was not the first time the police had been called on my son. I was the first parent to call the police, when Michael was nine years old and pulled a knife out one summer day, threatening to stab himself in the heart after I asked him to clean his room. We were already trying to manage Michael’s still unknown condition with medication. After talking with the officers, I decided not to have them file formal charges, hoping that we could explore better solutions with his therapist and psychiatrist.
I did not want to admit that my son had a mental illness. His father and schoolteachers were convinced Michael was on the autism spectrum, but I didn’t want to believe it. I wanted to wish him well, to rely on my own magical thinking to “cure” my child. Though I had never heard of “it’s all in your head” psychiatrist Thomas Szasz at that point, if I had read his book, I would have agreed: there’s no such thing as mental illness. Everything was situational. Michael was normal; he would simply grow out of these two- to three-hour whirlwinds that terrified me and my other children.
In October 2010, staring at my son in the juvenile detention holding cell, I had to concede defeat. This was not normal.
I wiped the tears away and went back to work.
As I mentioned, work has become a source of strength, a safe space where I feel successful and in control, in ways that I can never feel at home with my son. But like many parents whose children struggle with mental illness, I have lived in fear of losing a job (and benefits) because of my child’s extra needs. Every time I see the school on my phone, my heart races. And sometimes my phone blows up with Ada County numbers—police, social workers, juvenile detention.
In 2010, when Michael’s always-present behavioral challenges began to escalate dramatically, I was the department chair of general education at a small private career college in Boise, Idaho. In many ways, it was my dream job—intellectually stimulating and challenging, with a flexible but demanding schedule. The for-profit college sector gave me the opportunity to enter the workforce after thirteen years as a stay-at-home mother at a level that recognized my intellectual and academic achievements in my twenties without punishing me for my decision to take ten years off and raise four children. Traditional academia, especially in my field, Classics, would have turned up its collective nose at me, but my school was happy to use my natural talents for leadership and organization, as well as my ability to teach a wide range of classes, from English literature to art history.
The week that Michael went to juvenile detention for the first time, I became obsessed with Afghanistan, with the empty niches carved into worn sandstone where the Bamiyan Buddhas once stood to welcome travelers along the ancient Silk Road. I was teaching art history that month and preparing for my first doctoral program residency in Dallas, Texas, that weekend. I called my adviser to cancel my trip, my voice strangely calm as I explained what had happened.
“Are you okay?” he asked. “Are you sure you’re okay?”
Silly question.
The Bamiyan Buddhas and Bruegel’s Fall of Icarus—that’s what I most remember from the day my eleven-year-old son went to jail. I stared at this picture on my art history slide show for several minutes, thinking about children, choices, and things beyond our control. Auden was right when he wrote about that painting: “About suffering they were never wrong; / The Old Masters.” A lush landscape, a farmer hard at work plowing his sun-dappled field. A ship, sails furled in the wind. And in the distance, a speck of a boy falls from the sky, wings melting, with no one to save him, an unimportant failure. In fact, it’s almost funny in a dark, twisted way that if you google this image, it’s likely that in the version you find, Icarus has been cropped from the painting. We do not see his suffering, or his father’s.
That’s what it feels like when your child is sent to jail a few weeks after his eleventh birthday. That’s what it feels like when you stand in a courtroom, seeing your small boy hunched in a chair, in bright green sweats that engulf his skinny limbs, his hands in cold metal cuffs.
All around you, people are going about their lives as usual. They are shopping at supermarkets, talking on cell phones, ordering venti caramel machiattos at Starbucks. And everything in your world is falling to pieces. I’m reminded of Michel Foucault’s observation inMadness and Civilization that madmen replaced lepers during the Middle Ages. We still prefer to keep our madmen like lepers, out of sight and out of mind. Or worse, we scapegoat them.
Even though they have special protections under federal law, children with learning disabilities and mental illness are far more likely to be pushed out of mainstream schools and into the criminal justice system than their peers: a 2001 survey found that incarcerated children were four times more likely than the general population to have a disability that affected learning. My son was one of those children, charged with a status offense: juvenile beyond control. It’s an ineffective and inefficient way to address mental illness in children: for example, the cost of providing care for one minor in juvenile detention in California in 2011–12 was a staggering $179,400 per year. That number is per child, not a total. And it actually represents a significant savings when compared to 2008–09 figures: that year, the cost per minor in the Division of Juvenile Justice was $245,000, according to a state government budget analysis. By comparison, California public schools spent just over $9,000 per pupil in 2011.
The problem is huge, and children are being sent to prison at younger and younger ages. In 1996, Illinois became the first state in the nation to pass a law allowing incarceration for children as young as ten, after a horrific case where two children, age ten and eleven, dropped a five-year-old boy from a fourteenth-floor window to his death because the younger child refused to steal candy for them. Some states, including Pennsylvania, have no minimum age limit for when children can be tried as adults, which Elizabeth Scott and Laurence Steinberg argued against in their 2009 book, Rethinking Juvenile Justice, noting that children and young teens simply do not have adult brains and cannot be expected to comprehend the magnitude of choices like these.
That weekend, I went to the detention center during visiting hours, fidgeting in the waiting area with all the other parents. Usually I’m pretty gregarious and can make friends with any group of strangers. But no one felt like talking. None of us could even look at each other. The vestibule of the juvenile detention center was a far cry from an honors award ceremony I’d attended with my oldest son earlier that week, that’s for sure.
We marched back to the gym, single file, avoiding each other’s eyes. One of the guards, a pleasant-looking dark-haired woman, pulled me aside. “Your son is a really sweet kid,” she told me. “I just want you to know we are all looking out for him. I’m a mom, too.”
I sat at a cafeteria-style lunch table, waiting. He shuffled in, head down, those baggy pants secured around his waist with a piece of rope. We played chess for an hour. Michael beat me over and over again, his eyes sparkling when he captured a pawn en passant or castled his king. I’m an adequate chess player, but I’ve only stalemated Michael twice in all our games, and that was only because he wasn’t paying attention.
A few days later, at his detention review hearing, the juvenile judge released Michael to my custody pending his trial. And suddenly, just like that, I was a full-time single mother of a child with mental illness. Until that day, I had shared half-time custody of Michael and his three siblings with their father. On my weeks off, I had a chance to rest, to catch up on missed work, to even enjoy life. I spent my weekends off in San Francisco or Salt Lake City or Las Vegas visiting friends, or backpacking in Idaho’s wilderness. I would not enjoy that kind of rest again for quite a while.
I wasn’t ready to admit the enormity of the challenge I was facing to myself, or to anyone. Not even my closest friends knew the struggles I lived with daily. There’s a reason for that: being a single mother with a child who has mental illness is the hardest thing I’ve ever done, and I’ve never set the bar low. In one 2004 study, more than half of mothers of children with autism reported significant psychological stress, with single parenting and being the parent of a son marked as significant risk factors. In fact, as I mentioned earlier, the stress of parenting a child with autism has been compared to the stress that soldiers experience under fire.
COURT-ORDERED THERAPIES
At first Michael and I went through a honeymoon period as we awaited his trial. He was arrested in October—the trial was scheduled for June, a seemingly interminable distance from crisp autumn leaves and harvest festivities. In the interim, the court ordered a 20-511A team to develop a plan for my son, with representatives from the Department of Health and Welfare and the Boise School District assembled monthly to discuss treatment options and chart his progress. We obtained diagnostic services through Children’s Mental Health, something we’d previously had to pay for out of pocket. Weekly psychosocial rehabilitation (PSR) from a local service provider was also provided free of charge. On the negative side, my calendar was soon full of meetings and appointments. I had to attend them all or face the possibility of contempt of court charges.
As this book will explain in subsequent chapters, public schools and juvenile justice programs are the two main ways most parents access mental health care for their school-age children. The 20-511A team discussed the possibility of initiating an individualized education plan (IEP) with the school district. An IEP is essentially a contract that explains how a school district plans to comply with various federal legislation including Title II of the Americans with Disabilities Act of 1990 and with the Individuals with Disabilities Education Act (IDEA), which mandates a free and appropriate education (FAPE) for all children at taxpayer expense. A less restrictive Section 504 plan, named for Section 504 of the Rehabilitation Act, provides accommodations for students with disabilities but does not require specialized instruction or related services.
Michael had been on a Section 504 plan for several years to accommodate his dysgraphia, a learning disability that prevents him from writing clearly and organizing his thoughts on a page. Though Michael can perform complex mathematical calculations in his head, he can barely write his name and must use a keyboard for most classroom work. Ultimately, the team decided to keep our less restrictive Section 504 plan in place, with modifications for Michael’s sensory integration and behavioral issues. Despite the array of services that would become available to him through an IEP, I did not want one for my son because I was ignorant of the benefits and sensitive to the stigma that attaches to children who receive “specialized instruction,” a label that may actually limit educational opportunities for students with learning disabilities.
Now I know better. But parents of children with mental disorders should take note: it’s not the school district’s job to educate you about what constitutes a “free and appropriate education” for your child—and the district is not always on your (or your child’s) side, as we’ll see in chapter 5.
Michael continued weekly therapy visits and added occupational therapy to the mix. Occupational therapy is his favorite treatment. He spends an hour in what looks like a giant playground, with rope swings, hammocks, and giant foam blocks that can be used as obstacle courses. Sometimes he plays games; he also learns to be still and to self-regulate. His greatest challenges are moving through space and motor planning, something most of us take for granted. Motor planning is unconscious for most of us—we instinctively know how to find our keys, open the car door, adjust the mirrors, turn the key in the ignition, and put the car into reverse. Complex motor tasks are difficult for Michael; sometimes even changing course on a sidewalk to avoid collision is more than he can do. Manipulating the combination lock on his middle school locker was nearly impossible for him.
We adjusted Michael’s medication, taking him off the Zyprexa that had caused him to gain nearly thirty pounds in one year without positively affecting his labile moods. His psychiatrist recommended Celexa instead, and the weight quickly came off within a few months. On the advice of his therapist, who had read an article about mood improvements in children whose tonsils were removed, I had Michael tested for sleep apnea.
The night of the sleep study did not start well. Michael is extremely sensitive to touch, and the attachment of nodes to his buzz-cut head almost triggered one of his rages. But he calmed down and was eventually able to fall asleep. The study revealed moderate apnea, and we scheduled the adenotonsillectomy. Later studies have not confirmed the assertion that adenotonsillectomy improves behavior, but in Michael’s case, I saw some immediate improvements, perhaps because he was sleeping better. The role of sleep disruption in children and adults with mental illness is one area of high interest for the research community.
In June 2011, as Michael and I waited outside the juvenile courtroom with his school principal, who was there to testify on his behalf, the prosecutor struck a last-minute deal. He dropped the battery charges, and Michael pled guilty to charges of disturbing the peace and juvenile beyond control. The latter charge is what’s called a status offense, meaning that Michael’s behavior was only criminal because he was a child. Other examples of common status offenses include truancy and underage substance abuse. The judge accepted the plea bargain and sentenced him to a year of probation, which he completed successfully.
But everyone involved in Michael’s care looked to his imminent transition to middle school with dread, and our fears were not unfounded. On the strength of his assessment test scores, Michael was admitted as a sixth grader to Treasure Valley Math and Science Center (TVMSC), a prestigious, advanced public school for gifted children. But after just a few days of class, it was clear that he couldn’t navigate the baffling world of middle school as a sixth grader, so I returned him to his home elementary school, a classical studies magnet program where teachers and the school principal understood his needs and appreciated his quirky humor, blazing intelligence, and occasional inappropriate outbursts and behaviors.
Michael couldn’t handle TVMSC as a seventh grader, either. Within a few weeks, he had threatened a classmate with scissors, spit on another classmate, and disrupted the environment, on average, according to one of his instructors, thirty times per hour. When placed in a “safe” room to calm down, he removed his glasses and attempted to electrocute himself by shoving them into an outlet. Once, in his English class, he stood in the middle of the room and in a sonorous voice called down death and destruction on his classmates.
The school had received numerous complaints from parents about Michael. The principal was frustrated by him and couldn’t understand why he would “waste so much potential.” At first we tried transferring him to a regular junior high school, but things went from bad to worse. He couldn’t open his locker. He couldn’t handle the disruption of class changes. Michael was increasingly depressed and despondent. Finally, we got the IEP in place to address his significant emotional and behavioral issues and transferred him to ASCENT, a grade 7–12 program for emotionally and behaviorally disturbed children, mostly boys. This program does not even begin to address my son’s intellectual needs. But he can make it through a school day, most days, without having the principal call me, which means I can stay at work and support my family.
THE PERSONAL COST
As Michael’s story illustrates, in America we deal with our children who have mental illness through two institutions: schools, where in the best-case scenarios they are placed on IEPs and mainstreamed with teachers who are struggling with too-large classes in which one in five children has a diagnosable mental disorder; and juvenile detention, where up to 75 percent of the population has at least one mental disorder. And often, the failure of the first institution to manage the child’s condition leads to the second institution, a place of last resort. In some states, this transition from school to prison is so regular that it’s been called a “pipeline,” one that disproportionately affects poor children and their families.
At a meeting of the Region IV Children’s Mental Health Subcommittee in February 2013, the Boise School District presented its numbers of students on IEPs who were diagnosed with attention-deficit/hyperactivity disorder (ADHD), emotional or mood disorders, and autism spectrum disorders. The numbers dropped by more than half after children turned sixteen.
“Am I the only one seeing this?” I asked, pointing out the huge discrepancy. I looked across the room at the representative from Juvenile Corrections. He met my eyes and nodded.
“What you’re thinking is probably spot-on,” he said. “We would need to look at data across multiple years, but . . .” He shrugged helplessly.
I was thinking that somewhere between age fifteen and sixteen, these children drop out of school and end up in jail. That’s why moms like Nancy Lanza end up homeschooling their children: it’s just too hard to deal with the frequent calls, the bullying, the frustration and humiliation (for both parent and child) of dealing with public schools.
The night my blog post went viral, my partner, Ed, and I visited my son at Intermountain Hospital for the first time since his admittance. I was still bruised and hurting from the encounter that had put him in the hospital days before. On the way to school that Wednesday morning, we got in an argument about the color of pants he was allowed to wear. When I told him that he was grounded from video games for his disrespectful attitude, he turned cold. “Then I’m just going to kill myself,” he said.
December 12, 2012, was the Rubicon for me. I had told Michael that if he ever threatened to kill himself again, I would take him straight to the hospital. And I did.
That Saturday night, Michael was apologetic and anxious.
Table of Contents
Foreword ix
Introduction xiii
1 A Day in My Life 3
2 Stigma 31
3 Science 59
4 Mental Health Care 91
5 Education 124
6 Crime and Punishment 148
7 Family 172
Epilogue 197
Acknowledgments 205
Bibliography 207
Notes 229
Index 275
What People are Saying About This
Liza Long offers a lucid description of the myriad of problems that confound and perplex the average parent who struggles mightily to find answers and relief for their child. In the process, she charts a course that will provide an excellent guide for others on this difficult journey as they make their way through the maze of our current mental health care system.
Liza Long does a terrific job bringing a major issue to national attention: we need to engage in a frank discussion of children's mental health disorders that removes stigma, guilt, shame, and blame from the discourse. Only by confronting these issues head-on can we hope to put a stop to the "school to criminal justice system pipeline" that exists for too many of these children. Amidst personal sacrifice, she makes a Herculean effort to show us solutions. Thank you Liza, for breaking the 'silence.'
In this courageous, determined, radical book, Liza Long exposes the dearth of alternatives for parents of kids with mental illnesses, the shame that attends their perceived failures, and the hope that such families may find their collective voice and demand better options. I hope her passionate cry is heard far and wide.
Not only is Liza Long's The Price of Silence an honest and inspiring memoir, but it's an incisive indictment of what passes for a mental-health-care system in America—and what's too often the result, mental illness leading to prison, not treatment. But The Price of Silence doesn't only illuminate the crisis, it offers solutions—ones that can lead to healing.
The most excruciatingly honest, portrayal of what it's like to be the mom of a child with serious mental illness and how the mental "health" system gets in the way.
“In this courageous, determined, radical book, Liza Long exposes the dearth of alternatives for parents of kids with mental illnesses, the shame that attends their perceived failures, and the hope that such families may find their collective voice and demand better options. I hope her passionate cry is heard far and wide.”
—Andrew Solomon, PhD, author of The Noonday Demon and Far from the Tree
“Not only is Liza Long’s The Price of Silence an honest and inspiring memoir, but it’s an incisive indictment of what passes for a mental-health-care system in America—and what’s too often the result, mental illness leading to prison, not treatment. But The Price of Silence doesn’t only illuminate the crisis, it offers solutions—ones that can lead to healing.”
—David Sheff, author of Beautiful Boy
“Liza Long offers a lucid description of the myriad of problems that confound and perplex the average parent who struggles mightily to find answers and relief for their child. In the process, she charts a course that will provide an excellent guide for others on this difficult journey as they make their way through the maze of our current mental health care system.”
—Demitri Papolos, M.D., Co-Author, The Bipolar Child
“The most excruciatingly honest, portrayal of what it's like to be the mom of a child with serious mental illness and how the mental "health" system gets in the way.”
—DJ Jaffe, Executive Director, Mental Illness Policy Org
“Liza Long deals a powerful and devastating blow-by-blow indictment of how our mental health system has failed us. Her courageous voice is an important call to action for a nation that has for too long ignored the true situation. A must-read for anyone who wants to understand the mental health crisis facing our nation."
—Matthew Lysiak, author of Newtown
“The Price of Silence goes deep into the civil rights issues that parents face in getting appropriate care and education for their children. Liza's ability to share the truth about her family's experiences is changing history, making it possible for others to step out of the darkness of isolation. Courage personified, she is our Flawless heroine.”
—Janine Francolini, Founder and Board Chair of The Flawless Foundation: Seeing the Perfection in Every Child
The Price of Silence goes deep into the civil rights issues that parents face in getting appropriate care and education for their children. Liza's ability to share the truth about her family's experiences is changing history, making it possible for others to step out of the darkness of isolation. Courage personified, she is our Flawless heroine.
The Price of Silence is a powerful book that will change your mind about childhood mental illness in America. Integrating personal narrative with startling statistics, mother and "accidental advocate" Liza Long gives voice to the parents and children who've been stigmatized too long, and calls for alternatives to managing mental illness in families. Written with candor and compassion, this book will linger after the final page is turned.
Liza Long deals a powerful and devastating blow-by-blow indictment of how our mental health system has failed us. Her courageous voice is an important call to action for a nation that has for too long ignored the true situation. A must-read for anyone who wants to understand the mental health crisis facing our nation.
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