What Would Jesus Sing?

Maybe It's Time for Some New Christmas Carols

I was raised by Mormon hippies. In addition to traditional Christmas carols like “Hark, the Herald Angels Sing” and “We Wish You a Merry Christmas” (my father was especially fond of the “figgy pudding” verse), we learned the complete canon of 60s protest anthems, including one of my favorites, as sung by Peter, Paul, and Mary, “If I Had a Hammer.”  The song was written by Pete Seeger and Lee Hays in 1949 to reflect the progressive labor movement and experienced a “second coming” as a civil rights era anthem in the 60s. 

Remember when people could protest bad stuff and change the world?

It’s that time of year again—the time when media professionals take advantage of unusually quiet offices to compile their annual “Top Ten” lists. Most 2014 lists will likely lead with the tragic deaths of Michael Brown and Eric Garner (and perhaps of Brooklyn police officers Rafael Ramos, and Wenjian Liu)—manifestations of the same civil rights tragedies that my parents used to sing about 50 years ago. In fact, the past few years have seen several stories of marginalized people protesting privilege and power.

In 2011, Occupy Wall Street was declared the most important news story in a year that included the Gabby Giffords shooting by a man who had schizophrenia and the deaths of Osama bin Laden and Steve Jobs. I had a chance to see the Occupy movement for myself when I was visiting friends in November 2011, the weekend before Mayor Bloomberg shut the Zuccotti Park party down. My first-hand impressions were not positive. I talked to the self-proclaimed media liaison, a pleasant-faced union organizer who refused to give me his real name, though he told me he had been bussed in from Pittsburgh. We had an interesting discussion about classism and Marx, the kind you can’t generally have in Idaho. But while I wanted to sympathize with the message of the 99 percent, what I witnessed was less a collection of legitimate movement sympathizers and more an exploitation of homeless people, many with mental illness.

(Aside: 2011 also saw a black man, Troy Davis, executed by the state of Georgia for the 1989 murder of an off-duty white police officer. Davis steadfastly maintained his innocence, and there was no physical evidence linking him to the crime).

In 2012, the top stories were mass shootings: the tragic deaths of 20 first graders, 6 educators, Adam Lanza, and his mother in Newtown, Connecticut; and the Aurora, Colorado movie theater shooting by James Holmes, a young man with schizophrenia. The shootings trumped even the 2012 presidential election and Hurricane Sandy.

(Aside: In February 2012, an unarmed black teenager, Trayvon Martin, was shot and killed by George Zimmerman; according to Pew Research Center, 70 percent of blacks closely followed the story, while only 30 percent of whites cared.)

In 2013, we lost a cultural warrior, Nelson Mandela, and gained another one, Pope Francis. George Zimmerman was acquitted of second degree murder in the Martin case, sparking protests that have simmered and erupted ever since. Princess Kate had a baby, and two Chechen brothers brought terror back to America in the Boston Marathon bombings.

(Aside: The most prominent mass shooting of 2013, Eliot Rodger’s Santa Barbara rampage, didn’t make the top ten news stories, nor did any of the 26 other mass shootings that year. Still, in 2013, we talked about guns, and we talked about mental health, and some of us even hoped we would do something. Representative Tim Murphy introduced a comprehensive mental health reform bill, the “Helping Families in Mental Health Crisis Act.” Despite broad-based bipartisan support, the legislation died in committee this year.)

In 2014, we heard about police shootings (many of those killed had mental illness). And we heard a lot about Ebola. As of December 22, the World Health Organization reported 7,518 deaths in West Africa from the virulent hemorrhagic fever. The World Health Organization reports that suicide deaths globally are more than 100 times more common, with more than 800,000 people dying by suicide each year. In fact, suicide is the second leading cause of death after accidents for people ages 15-29.  

(Aside: We talked about suicide in 2014 too, first in February when Phillip Seymour Hoffman died of an overdose at the age of 46, then with beloved comedian Robin Williams’s tragic death in August. But neither story made the top ten cut, nor did the fact that James Holmes, who is known to have schizophrenia, is facing a death penalty trial, while Scott Panetti, who also has well documented schizophrenia narrowly avoided death at the hands of the State of Texas.)

Which brings me to Christmas.

Forgive me for asking, but sometimes I wonder, when I look at the mess this world has become: what would Jesus do? Yes, that Jesus, the “reason for the season,” the baby god born in poverty, raised in a climate of oppression and social injustice?

Jesus would demand change. Jesus would tell us to love each other. Jesus would die for his truth.

Meanwhile, we buy presents—so many presents!—and bake cookies and sing “Have a Holly Jolly Christmas.” 

We are comfortable with the baby Jesus, lying serenely in his manger while angels watch over him.

We are less comfortable with Jesus in the synagogue, speaking truth to power. Or Jesus on the cross, dying to save people who just don't want to be saved.

I think that if Jesus could choose his own carols, he would prefer Pete Seeger’s call to action: “It’s the hammer of justice! It’s the bell of freedom! It’s the song about love between my brothers and my sisters all over this land.”

Maybe we need some new Christmas carols in 2015.

Two Years to Nowhere

Two Years After Newtown, Mental Health Still Matters, and Most People Still Don't Care

"On the first day of Christmas, my true love gave to me..."

This weekend, on the second anniversary of the Newtown shootings, I took my daughter to see her first performance of the Nutcracker. Unsure of the exact venue, we parked on the street and followed the hordes of blond girls dressed just like my daughter in velvet dresses with satin sashes. I have wanted to reenact this holiday tradition from my childhood with my own now 9-year old for many years. But this year was the first time we could actually go together. Two years ago, her brother was in an acute care psychiatric hospital, and I shared our painful story with the world. A year ago, she was with her father, who talked a judge into giving him full custody by arguing that the younger two children were not safe in a home with their brother. Mental illness affects more than  the individual: it affects the whole family.

This year, two years after Newtown, our family is stable, happy, spending the holiday season the way we imagine families in Hallmark cards spend it: decorating our tree, wrapping presents, drinking hot cocoa, and making up new lyrics to “The 12 Days of Christmas.” But we know how fragile, precious, and rare this gift of Christmas present is.

What changed for my family in the two years since Newtown? One word: treatment. Before Newtown, I was afraid to speak up and demand help for my son. After Newtown, in large part because I shared our family’s private tragedy, my son, unlike Adam Lanza, got the help he needed. A diagnosis of bipolar disorder does not “fix” all the challenges my son and our family still face: after years of maladaptive coping strategies, he—and we—are learning a new normal, where we ask for help when we need it. And we still struggle, as many families do, with access to care. But we have what so many other families still lack: hope.

In the immediate aftermath of Newtown, I felt tremendous optimism that people finally cared and understood about mental illness. Sadly, I was wrong. The simple changes—earlier interventions, more access to care, more support in the school system, day treatment crisis centers—have not materialized. We continue to blame parents—and children—for behavioral symptoms of brain disorders. Worst of all, we continue to sentence people to jail or relegate them to homelessness because of their illness.

Along with other mental health advocates, I’ve watched the responses to the tragic deaths of Michael Brown and Eric Garner with considerable sympathy. People with mental illness, no matter what their race, also face challenges with law enforcement officers, especially in cities where police lack Crisis Intervention Team training. Here is a partial list of people with documented mental illness who were killed by on-duty police officers in 2014:

Here's an idea! We could send an ambulance on mental
health calls, like Norway does. 

1. Keith Vidal had documented schizophrenia. When his family called 9-1-1 for help with a behavioral episode, the police shot and killed the 90-pound 18 year old. 
2. Parminder Singh Shergill, a U.S. Army veteran who suffered from PTSD, was shot and killed by police after his mother called and asked for medical help. He lunged at officers with a knife. 
3. James Boyd, a homeless man with mental illness, was shot and killed in a confrontation with Albuquerque police. 
4. Matthew Pollow had schizophrenia. He lunged at the police with a screwdriver and was shot and killed. 
5. A woman in Santa Clara called police to say she was suicidal. When she answered the door holding a baseball bat, they shot and killed her. 
6. Dontre Hamilton, who had schizophrenia, was shot and killed by Milwaukee police in a confrontation. 
7. David Latham, who likely had schizophrenia and had been off his medications for a few days, was shot and killed by Virginia police when his aunt called 911 to ask police to help him. 
8. Jason Harrison, who had schizophrenia, was killed when his mother called the Dallas police to ask for medical help for her son. 
9. Nick Davis, who had schizophrenia and bipolar disorder, was shot and killed by police when he swung at them with a crowbar. 
10. Rosendo Gino Rodriguez was killed by police in Midland, Texas when he retreated to his room during a welfare check initiated by his family. 
11. Michelle Cusseaux was shot and killed by Phoenix police who were tasked with taking her to a mental health facility on an emergency hold. 
12. Kajieme Powell, a St. Louis man with mental illness, charged police yelling “Shoot me now!” They did, just days after Michael Brown’s death in nearby Ferguson. 
13. Chelsea Fresh, who suffered from bipolar disorder, was shot and killed by police in Beaverton, Oregon. She was holding a rifle. 
14. Calvin Peters, a Brooklyn man who had bipolar disorder, was shot and killed after he stabbed a student in the face. 
15. Thomas Read was shot and killed in New Jersey when he came at police with a knife. He had schizophrenia and had been unable to get his medications because of a problem with his health insurance.

This list is not exhaustive: it’s hard to track how many people are killed by police each year and whether those killings are justified. And the problem works both ways. Just as people with mental illness are killed by police, law enforcement also faces threats: Mental Illness Policy.org has tracked 115 deaths of police officers since 2009 that can be attributed to people with untreated mental illness. 

I should stress here that people with serious mental illness are not likely to be more violent than people in the general population, unless they are untreated. Without treatment, the risk of violence to self and others rises. That has certainly been my experience with my own son. Once we had a correct diagnosis and medications that worked, the threats of harm to self and others stopped. I don’t believe that medication alone is the answer—talk therapy and occupational therapy are extremely important in helping my son to navigate a world that presents him with significant sensory challenges. But lithium changed everything for my son and my family.

I think often of the Newtown families, the pain of that first Christmas without loved ones, of gifts wrapped for children who would never open them, of holes left in hearts that will never fill. And I also think of Adam Lanza and his mother and wish for all our sakes that he could have gotten treatment before tragedy. That’s my wish for every family who struggles with the often overwhelming challenges of mental illness. But we can’t do it alone. We need the support of our friends and communities. We need society to stop blaming us and our children. But most importantly, we need access to care. Without treatment, two years after Newtown, for too many families, Christmas is a time of sorrow and loss and grief. 

Sins of the Mother

A child's death by suicide is every mother's worst nightmare.

Why Blaming Nancy Lanza for Adam’s Illness Is Easy (and Why We Need to Stop)

“Mom, I don’t want to be anymore.” My son, four years old, his eyes swollen and red from sobbing, burrowed his white duck-fuzz head against my chest.

I froze. “What do you mean?” I asked gently. “Everything is okay now. The nightmare is over.”

He looked up at me. “I want to be a zero,” he replied. “I don’t want to be anymore. I want to be a zero.”

Nothing in the parenting books or classes about preschool behavior prepares you for this: your young child’s desire to end his own life. True, “Michael’s” nightmares were getting worse, and he sometimes sleepwalked. Days could be even tougher: Michael would throw tantrums that lasted for hours and left us both exhausted. I didn’t know what to do.

As he grew older, his suicidal thoughts became more frequent and more detailed. He threatened to kill himself several times a week. Though I normalized many things about my son’s unpredictable and sometimes violent behavior, I never got over the suicide threats. They still haunt me.

For this reason, I followed Brittney Maynard’s tragic life-ending choice with a different perspective than many people. While I respect her struggle and her wish to end it (I too have lost a loved one to cancer), I know many other young people who are diagnosed with a serious, life-threatening illness who repeatedly express a desire to end their own lives. My son was one of them.

So was Adam Lanza.

Now a new report from Connecticut’s Office of the Child Advocate details the many ways the system failed Adam, and the children he killed at Newtown in December 2012.  One significant finding: Adam was “completely untreated in the years before the shooting and did not receive sustained, effective services during critical periods of his life.”

In fact, if you read the summary of Adam’s early life, it looks like my son’s (and many other children’s) path. Adam had developmental challenges in early childhood. I’m sure at least one person told Nancy, “He’s just a boy,” or “He’ll grow out of it.” School personnel identified social/emotional challenges that became more apparent after fourth grade. I’m sure that’s when they started suggesting that Nancy home school her son, ostensibly for his own good, but actually to prevent disruptions in the learning environment. He was initially evaluated by a costly outside expert (Yale), with a recommendation for a comprehensive treatment plan of the type, no doubt, that bankrupts even moderately wealthy families like the Lanzas. In this respect, my son differs from Adam: we never had access to that kind of resource until my blog about Newtown went viral.

Where my son’s path diverged from Adam’s is at age 13, when my son was finally diagnosed with bipolar disorder. Since that diagnosis and treatment began, my son has not had any violent behavioral outbursts or suicidal thoughts. He is back in a mainstream high school, doing well in all his classes, writing a sequel to his first novel (tentatively entitled The Demigods from Outer Space), and starting a chess club.

But here’s the thing: I don’t attribute my son’s remarkable progress to anything special about my parenting. I was lucky, period. I got a diagnosis for him, and medications that work. And most importantly, I was able to intervene before my son turned 18, despite the many wrong turns we took in the baffling and fragmented mental health care maze early on.

When I tell people—including media professionals—that parents cannot help their sick children after the age of 18, many of them are surprised. After all, if your 20-year old son was in a car accident and suffered a traumatic brain injury, you would be right there by his side, communicating with his healthcare team, and likely even making decisions about his care if he lacked the capacity to do so.

When your child has a serious mental illness and is over the age of 18, it doesn’t work like that. Serious mental illness is classified as “behavioral health,” and in most cases, people who have behavioral health problems have the right to refuse treatment.   The very public spectacle of Amanda Bynes’s breakdown has introduced many people to this terrible parental conundrum for the first time.

Unlike me, Nancy Lanza was incredibly unlucky. Yet the Child Advocate report, in the time-honored tradition as old as Eve of blaming the mother, concludes that Nancy “enabled” her son and was perhaps in denial of the seriousness of his illness.

I completely understand how that can happen to a parent who has tried, many times, to get services, and failed. I completely understand how that can happen to a mother who is raising a potentially violent son on her own, without support. And I can completely understand how that can happen to a parent in a society that stigmatizes mental illness and medication, that insists on treating mental illness as a “choice” rather than as a disorder.

Through the years, bit by bit, Nancy normalized Adam’s extremely abnormal behavior. In fact, what seems very bizarre to outsiders becomes “normal” for many families who are struggling with mental illness. This concept is difficult to understand unless you have actually lived it. But if you are living it, I know you’re nodding your head in agreement right now.

High profile murder-suicides like Columbine or Newtown bring attention to the problem of mental illness. Yet two years after Newtown, we still don’t have solutions for children and families. And two years later, both this most recent report and the media are still blaming the mother.

What will it take? How many more families will suffer from tragedies because we lack effective treatments?

Mental health professionals tell us that suicide is preventable. But if numbers are not decreasing, it’s clear we need better solutions, beginning with earlier diagnosis and intervention for children who suffer. That’s one area where I agree completely with the Connecticut Child Advocate report.  A child’s death by suicide is every mother’s worst nightmare. Though Nancy Lanza paid the ultimate price when she couldn’t get help for her son, at least she was spared this: she didn’t live to see her child kill— or die by suicide.

Knock Knock, Who's There?

Law enforcement officers are first responders
for  mental illness.
Photo by leila haj-hassan, freeimages.com

When your child has a mental illness, too often it’s the police

Last night, I was abruptly awakened at 4:00 a.m. by the sound of my doorbell ringing. Confused with sleep, I struggled to pull on a pair of jeans as the doorbell rang again, followed by an insistent knocking.

“Who is there?” I said as I stumbled to the door.

“The police,” a firm male voice responded. “Open up please, ma’am.”

My heart froze. “Where’s my son?” I thought, panicked.

I slowly opened the door to see two police officers. “Can I help you?” I asked.

“Is that your car, ma’am?” the female officer asked, gesturing toward my grey Suzuki.

“Yes,” I replied.

“The door is open,” the male officer said. “Will you check inside and see if anything is missing?”

My heart started beating again. It wasn’t anything serious; my son had just forgotten to close the car door behind him, like he forgets so many things: dishes on the table, cupboard doors open, sometimes even the refrigerator or freezer gaping wide, sending my electric bill sky high.

My 14-year old son has bipolar disorder. For years, he experienced unpredictable, violent rages. The police have been frequent visitors to our modest suburban townhome. Sometimes they have taken him to the emergency room. Sometimes they have taken him to juvenile detention. Every time, my family has been afraid.

This morning, I read a poignant post on helicopter parenting of adult children with mental illness—one that I am afraid will be my experience in a few years. Karen Easter, a Tennessee mom-advocate, wrote this about  her son:

[O]n bad days, when it is apparent he hasn't been taking his meds, I have no other choice but to put on my helicopter mom hat.
In fact, I have never liked this hat.
Did I mention I really, really despise hats?
Hey, wait just a minute ... I should NOT have to be wearing this hat AT ALL!
But I wear it because right now this very minute, I must hover to keep him safe--only because the system has failed him and our family miserably. I don’t really want to wear this hat.

For so many parents of children with serious mental illness, this last week of August is a nail-biter as we wait to see whether Congress will do the right thing and pass Representative Tim Murphy’s proposed “Helping Families in Mental Health Crisis” Act. Here are some of the critical reforms that Representative Murphy’s bill provides:

Revising HIPAA Laws and Medicaid Reimbursements

Privacy laws in healthcare prevent parents from getting crucial information that they need to help their adult children in crisis. And the Medicaid IMD exclusion has directly caused an acute shortage of inpatient psychiatric beds for patients with mental illness who need treatment. Today, there are only 40,000 psychiatric beds available in the nation. If my son required longer term care, he would have to go hours away from my home. This is true for many families.

Providing Alternatives to Institutionalization through AOT

Assisted Outpatient Treatment (AOT)  is a proven alternative to keep people stable and productive in their communities. The opposition to Rep. Murphy’s bill has labeled this provision as “forced treatment.” It is not. AOT laws are already on the books in 44 of 50 states and “require mental health authorities to provide resources and oversight necessary so that high-risk individuals with serious mental illness may experience fewer incidents and can live in a less restrictive alternative to incarceration or involuntary hospitalization” 

A few weeks ago, I spoke with a young woman who opposed my views on AOT. She had been in a psychiatric hospital for more than a month and felt that the care she received was “horrible.”

“Have you been to jail?” I asked. She admitted that like many people who have mental illness, she had.

“Which did you prefer?” I asked.

“The hospital,” she responded without even hesitating. But she made a good point: our current in-patient hospitalization practices, while not as horrible as the psychiatric institutions of yore, could still use some serious makeovers in terms of both physical facilities and therapeutic practices. One of my friends with bipolar disorder has envisioned a therapeutic hospital that would feel more like a spa, where people could stabilize in safety while also continuing to work remotely or go to school—to do the things that give everyone’s life meaning and purpose. Similarly, AOT aims to keep people in their communities, not force them into institutions.

Restructuring SAMHSA funding

I have already expressed my frustrations with SAMHSA and how they fail to provide assistance to the most critically ill patients and their families.  Representative Murphy’s bill restores accountability by tying funding to evidence-based practices that actually help people with mental illness to manage their conditions and live productive, healthy lives. Far from discouraging innovation, as the opposition warns, this provision will actually encourage organizations to build program evaluation into their practice, providing data about what works—and what doesn’t—so that we can focus on helping people to make their lives better.

Let me give you an example from my own state. In an effort to save money, Idaho contracted with Optum to manage its Medicaid mental health care. Optum looked at one service, psychosocial rehabilitation, or PSR, and decided that it was overused and often not medically necessary, especially in children. 

PSR had historically been used as a “catch-all” for children with serious emotional disturbances or behavioral issues. The result of this abrupt PSR denial was that families suddenly found themselves without a service they felt was necessary to their children’s health.

What did the evidence say? Because there were never any requirements to track outcomes, the state merely logged hours and made reimbursements. It turns out that no one really knows what PSR is in Idaho, let alone whether it is effective. Every agency essentially acted independently, developing their own model in the absence of standards for care. Two researchers did find significant clinical improvements for kids on PSR. But they only looked at one of many models. 

Tying outcomes to funding would have provided much-needed data on whether PSR works in children. If the data had been positive, we might have an additional valuable tool to help children function better in the community, a tool we could share with other communities to improve everyone’s care.

Representative Murphy’s bill was forged after the tragedy of Newtown, which also sparked my own desire to advocate for my son. As I researched the myriad problems that plague our system for my forthcoming book, I repeatedly found the same tragic story: poverty, mental illness, and prison. America’s incarceration rates when compared to other so-called first world countries are quite literally off the charts, with more than 2.4 million people in prison. 

If ever there was a truly bipartisan cause, it’s mental health. Fixing our broken mental healthcare system promises to ameliorate so many of the other social ills that harm children, families, and communities. A new advocacy organization, Treatment Before Tragedy, is sharing stories of families like mine, whose children are suffering.  If you are a family member of someone who has mental illness, I encourage you to join this organization and to share your story on Twitter, using the hashtag #Tb4T.

And if you haven’t, please call your representative personally and ask him or her to cosponsor Representative Murphy’s bill. Right now, if your child is in mental health crisis, your only options are to call the police or to go to the emergency room. We can and must do better for our children and families. No family of a child with mental illness deserves that dreaded knock in the middle of the night.