Treatment Before Tragedy: A Mother’s Plea

This is the third of a trilogy of blogs depicting a tragedy. The first installment, “Stigmatizing and Shunning the Severely Ill,” described the deinstitutionalization movement of forty years ago that resulted in the sudden and massive closing of psychiatric hospitals-under the pretense that more humane care would be provided in the community. In fact, the money saved didn’t follow the patients into the community. Instead, the severely ill, in their many hundreds of thousands, were shamefully neglected and have been mostly transinstitutionalized to prison or left homeless on the street.

The second blog provided an opportunity for historian Ed Shorter to answer the depressing question, “Is This the Worst Time Ever to Have a Severe Mental Illness?“ The US earns an F grade because of its lack of compassion for its most vulnerable citizens and its foolish wasting of money on expensive prison beds-money that would be more kindly and wisely spent on adequate community treatment and decent housing.

Part 3 puts a human face on the tragedy. Liza Long is the mother of a son who has bipolar disorder. When her Newtown blog post “I Am Adam Lanza’s Mother” went viral, she decided that she had to speak up for children like her son. Her goal is to expose the gaping cracks in our badly broken mental health care system. Her book, The Price of Silence: A Mom’s Perspective on Mental Illness, has been called “a searing indictment of the lack of affordable care available for the treatment of mentally ill adolescents.”

Liza Long writes:

This week, my friends are all posting adorable pictures of their smiling children, taller than last year, sporting backpacks and spiffy back-to-school outfits. The standard picture caption acknowledges a poignant truth of parenting: it’s so hard to send them to kindergarten/sixth grade/high school/college, to see the tangible evidence that little by little, they are leaving us.

Parents of children who have mental illness know that there are harder things.

Watching my eleven-year-old son duck into the back of a police car, his arms handcuffed behind him, his eyes red and swollen with tears, is one of the hardest things that I have ever done. I didn’t take pictures of that milestone event and post them to Facebook. And my Instagram account was quiet the day he shuffled into court in a bright green jumpsuit that was too big for him, his feet in shackles. The charge was battery, the consequence of a violent rage that my sweet, sensitive, loving boy couldn’t remember.

I don’t have pictures from those rite-of-passage days. But though the physical bruises have long faded, the memories, years later, are still vivid.

Other parents of children who have mental illness tell even harder stories than mine: Joe Bruce, for example, whose son Will, diagnosed with paranoid schizophrenia, killed his beloved mother, mistakenly thinking she was an Al Qaeda agent. “If only they had treated him before,” his anguished father told CNN reporter Will Drash in a heartbreaking interview that everyone should read.

I heard similar stories from families across the US while researching my book, The Price of Silence. Very few of these stories have happy endings for children or their parents. The hardest thing I learned was that my son’s multiple encounters with the police before the age of 12 were hardly unique: the school-to-prison pipeline disproportionately affects children whose only crime is poverty, race, or mental illness. Zero-tolerance policies that disproportionately affect children who experience behavioral or emotional disturbances were forged in the painful aftermath of the tragic 1999 Columbine shootings, designed around the comforting but false promise that we can keep our children safe.

But the reality is that these policies relegate many children who have mental illness to a life as second-class citizens, unable to find employment or even housing because their illness goes untreated. And too often, the lack of treatment results in suicide: it’s the third leading cause of death for young people ages 10 to 14, and the second leading cause in the 14 to 34 age range, with more than 11,000 deaths by suicide reported in 2011. To put things in perspective, that’s twice as many children and young people who die from suicide than those who die of all cancers combined.

Meanwhile, some in the mental health community continue to focus on “behavioral health” and “recovery” rather than acknowledging that our children are experiencing a frightening symptom of a choice-stealing brain disease, an illness that can be treated, just like cancer can be treated. As with cancer, not everyone will recover. But every child deserves a chance. And a child-or an adult-who suffers from an illness should not be treated in jail. As I’ve written elsewhere, SAMHSA isn’t there for us or for our children. Nor has NAMI taken the leadership role in calling for better treatment for those with serious mental illness.

Joe Bruce and I are both founding members of a new organization called Treatment before Tragedy. Our mission is to advocate for better treatment, services, care, and research for individuals and families affected by serious mental illness. Stories like Joe’s are hard to read, and even harder for us to share. But we can’t pretend that our mental health care system is working anymore. We have to speak up for our children, to demand the brighter future that they-and we-deserve.

When my son was in an acute care psychiatric hospital, I remember seeing a picture of a little boy who had leukemia in a grocery store checkout line. I gladly gave a donation to help him and his family. But the picture, like my friends’ back-to-school pictures, made me pause. I have never seen a picture of a child with serious mental illness in a grocery store checkout line. Too often, we parents live in shame, fear, and isolation. One of Treatment before Tragedy’s goals is to build a community of people who care and understand, and who can provide a virtual-or even a real-casserole to families whose children are suffering.

For the past few weeks, Treatment before Tragedy has used Throwback Thursday as a chance to share pictures of our own children and relatives in a happier time, the way we want to remember them-and the way we want to live with them again. If you or your loved ones are suffering from serious mental illness, I encourage you to join us. Every Thursday, tweet your favorite picture with the hashtags #TBT (Throwback Thursday) and #Tb4T (Treatment before Tragedy). A picture of hope is worth more than a thousand words.

Thanks so much, Liza. I too have been shocked and dismayed by the failure of governmental agencies (eg, NIMH, SAMHSA); professional associations (eg, The American Psychiatric Association, The American Psychological Association); provider groups; and patient advocacy groups (eg, NAMI) to defend the defenseless. It is easy and appealing to advocate for additional research funding or for insurance parity that mostly helps the mildly ill and the worried well. No one in power seems to much care about the needs of the most powerless.

The irony is that this could be the best time ever to be mentally ill. We have the tools and many European countries apply them well. We don’t lack the knowledge or resources; we lack only the smarts, organization, and compassion. To right this wrong, I hope people will join Liza Long’s and other parents’ crusade for Treatment before Tragedy.

No parent is happier than her unhappiest child.