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.

The Price of Silence

Dear Friends,

This is a humbling day for me. The first time I read a book and realized the power that words can hold over our hearts and minds, I knew that I wanted to write. Today, my dream of publishing a book has come true with The Price of Silence: A Mom's Perspective on Mental Illness, from Hudson Street Press.

But for me, the price of realizing my dream was beyond anything I imagined. I wrote The Price of Silence because like most  of us, after Newtown, I wanted answers. My quest through the complex and often hostile systems that families and children who have mental illness must navigate was personal: I live this experience daily with my dear son.

Kirkus Reviews described my book as "a searing indictment of the lack of affordable care available for the treatment of mentally ill adolescents."

Andrew Solomon, author of Far From the Tree (which everyone should read), wrote: 

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.

I am profoundly grateful to the families, providers, police officers, educators, and advocates who shared their often painful stories with me. It's not easy to talk about mental illness; I know that truth firsthand. And I am especially grateful to my son, whose perspective provides valuable insight into mental illness and how it affects children. His humor, intelligence, and love have made my life immeasurably better. He is not a bad kid--he is an incredibly brave kid (and he just finished writing his first book! At age 14! It's about demigods from outer space).

But today, though I am grateful that so many people are speaking up and sharing their stories. I am also saddened at our inability as a society to act. People who have mental illness, including children, are "treated" in jail or left to die on the streets or by suicide. This is a national tragedy of epic and growing proportions. I feel that we have a moral obligation to care for our children, brothers, sisters, parents, friends, and colleagues who have mental illness.

I hope you will read my book. But more importantly, I hope that you will join me in speaking up for change. Please contact your representatives in  Congress. Join Treatment Before Tragedy. Participate in your local NAMI walks this fall. And share your stories. Their truth is powerful. Together, I know we can make a difference. In the words of one of my favorite poets, Robert Frost:

 

Only when love and need are one, 

And the work is play for mortal stakes

Is the deed every really done

For heaven and the future's sakes.

These are our children, and this is their--and our--future.

Best to you all!

Liza

P.S. If you do want to buy the book, please consider a local bookseller. Here are two of my favorites:

Iconoclast Books
www.iconoclastbooks.com
671 Sun Valley Rd W, Ketchum, ID 83340
(208) 726-1564

Rediscovered Books
www.rdbooks.org
180 N 8th St, Boise, ID 83702
(208) 376-4229

Oh SAMHSA, Where Art Thou?

Forced treatment already exists. It's called prison.

What did Newtown mean, if we can’t get help for children and families in mental health crisis?

I have a confession to make. Until about a year ago, I had no idea what SAMHSA was. I had never even heard of it. My son has struggled with serious behavioral issues for more than nine years, which we now know are caused by his bipolar disorder. We were working with a small army of social workers, counselors, school personnel, psychiatrists, therapists—and I was well-versed in a small textbook of acronyms like IEP, SMI, ADHD, ODD, ADA, etc. But not one time was SAMHSA or any of its programs ever mentioned to me as a resource.

I’m going to assume that you’re like me, that you also have no idea what SAMHSA is or what it stands for. It’s the Substance Abuse and Mental Health Services Administration, and it’s important because it gives out a ton of grant money—they have requested $3.6 billion for next year—to community organizations, many of which I also personally support with my own time and money. According to the agency’s own website, “Congress established the Substance Abuse and Mental Health Services Administration (SAMHSA) in 1992 to make substance use and mental disorder information, services, and research more accessible.”

Well, to put it bluntly, if that’s its mission, SAMHSA sucks.

A New Kind of Stigma

One of SAMHSA’s top priorities is the elimination of stigma that surrounds mental illness. And that’s important, because stigma harms children and families. DJ Jaffe of mentalillnesspolicy.org recently argued that stigma does not exist—that prejudice and discrimination are the real problem. I disagree with him on the first point, but could not agree more fervently with the second.

You don’t have to go any farther than the SAMHSA webpage to see an example of prejudice and discrimination against people with serious mental illness. Look around. Can you find anything—even the littlest thing—that talks about SMI? The message I get from SAMHSA is this: “Behavioral health is essential to health. Prevention Works. People Recover. Treatment is effective.”

I wish this were always true. For people with serious mental illness, people like my son, too often it’s not.

Pretty words, no substance

SAMHSA, the very organization tasked with serving children who have mental illness and their families, creates stigma by refusing to talk about—let alone provide solutions for—the inconvenient truths that plague too many of us: violence, prison, homelessness, fear. In fact, in its focus on “behavioral health” and “recovery,” I would propose that SAMHSA actually creates its own pernicious, subversive form of stigmatization within the very community that is supposed to be supporting people with mental illness.

Behavioral health implies choice. So does recovery. SAMHSA promotes a consumer model, where people with behavioral problems choose to get help and recover. The problem is that this approach does not reflect reality. For many people who suffer from Serious Mental Illness—schizophrenia, bipolar disorder, or major depression—choice is not an option.

Forced Treatment Already Exists. It’s Called Prison.

Why does this matter? Because right now, Representative Tim Murphy has proposed legislation that would overhaul our nation’s broken mental health system, providing much needed treatment to people with serious mental illness and restoring accountability to SAMHSA, an organization that has suffered from a massive dose of mission creep. HR 3717, the “Helping Families in Mental Health Crisis Act,” was drafted after extensive consultation with parents like me, consumers of mental health care, law enforcement professionals, and other stakeholders in this increasingly serious mental health crisis that has created an environment where mass shootings or stabbings barely make the news anymore.

But community organizations are out in full force against the bill. I know this, because as I mentioned, I volunteer for many organizations, and I am on their mailing lists. The primary rallying cry against the bill seems to be the idea of “forced treatment,” or treating people against their will. Here’s an example of the type of language they are using:

[HR 3717] is intentionally designed to make it sound benign and to gloss over the potential harm and many rights violations. For example, 'increase access to mental health treatment,' in many instances, means increased force. Empowering 'family members' means taking away privacy protections and rights to confidentiality for adults in mental health services. Expanding 'access to evidence-based treatments,' means eliminating access to alternatives that don't have the funds to become 'evidence-based.' Advancing 'medical research' means severely reducing funds to other groups and organizations, including the Substance Abuse and Mental Health Services Administration (SAMHSA). 

Oh, I get it. You can’t show any measurable outcomes for your education or anti-stigma or peer support program, and you are afraid you’ll lose your funding.

As a response, Democrats are rumored to be presenting their own mental health bill this week, eliminating the provisions of Murphy’s bill which would have helped families in mental health crisis the most. What I want to say to these probably well-meaning representatives is this: forced treatment for people with mental illness already exists. It’s called prison. E.F. Torrey, the mental health industry’s Cassandra, issued a clear-eyed warning about treating serious mental illness in jail back in 1993, and today, the problem is even larger.  

What Murphy’s bill actually calls for is Assisted Outpatient Treatment (AOT), and it’s a proven way to keep people out of jail and off the streets. In drafting HR 3717, Rep.Murphy, a child psychologist, did his homework. He talked to those of us who are living this nightmare. He knows what we need to prevent another tragedy like what happened to Creigh Deeds, or to countless other families. I want to ask those representatives who are not supporting Murphy: what did Newtown mean, if we can’t get help for children and families in mental health crisis?

I’m Okay, You’re Okay

The thing is, I also agree with SAMHSA. For neurotypical people like me, behavioral health is incredibly important to overall health and quality of life. I know this firsthand. Like most Americans, I have personally experienced bouts of situational depression. My senior year of college, I broke off an engagement. My father was dying of cancer. I could not experience any joy or imagine any meaning to life. I became passively suicidal and began to control the only thing I felt I could control: my daily intake of food.

Fortunately, my wonderful roommates intervened and got me help. I learned to overcome my negative thoughts, to exercise, to practice yoga. I developed resilience. I am grateful to the therapists, and yes, to the Zoloft, that got me through that dark period in my life. The tools I learned have proved invaluable to me as I have faced even greater challenges throughout my life. And I return to therapy whenever I need an objective third party to help me realistically assess my situational challenges. I guess you could say I’m in recovery.

This kind of thing doesn’t work for my son who has bipolar disorder. Not at all. The recovery model doesn’t work all that well for a subset of the population who suffer from addiction, either, as Philip Seymour Hoffman’s tragic death demonstrated.

In “The Lie of Focusing on Those with Serious Mental Illness,” Dr. John Grohol argued that we should treat all mental illness equally.  I respectfully disagree. We need to provide help and hope to families in crisis, before the next Newtown, before the next (insert location of most recent mass shooting). Our current system of forced treatment—prison—or no treatment—homelessness—must end.

This Is Serious

Image from http://agathoi.wordpress.com/2012/12/02/stoic-week-and-a-trip-to-the-er/ambulance/

Why HR 3717 “Helping Families in Mental Health Crisis Act” is so critical to care

It’s 3:00 in the morning. I’m sitting in a brightly lit waiting room at the ER, cuddling my then-three year old son, who can’t stop screaming and tugging at his ears. His cheeks are bright red; his duck-fuzz white hair stands up in all directions. I rub his green crocheted blankie—he calls it “Biss” for reasons still unknown—against his forehead, trying to sooth him.

I’m exhausted. The whole night has been like this. But it looks like we’re next in line for treatment.

Then my son's cries are drowned out by wailing sirens. An ambulance pulls up to the bay; we hear (but cannot see) a flurry of activity, intercoms buzzing. It’s a car accident, severe trauma. We wait, but without resentment. The Emergency Room is not like a grocery store checkout line, with first come, first served. It’s constant triage, assessing the most urgent needs first.

Ten years later, it’s my son, now 13, in the ambulance, held in restraints to keep him from bolting or striking people. Ten years later, it’s my son at the front of the line for treatment when we reach the emergency room. But once he’s calm and rational again, they send us home with five days’ worth of Zyprexa. There are no beds in the psychiatric hospital.

My emergency room story ended better than Virginia State Senator Creigh Deeds’s, whose beloved son Gus stabbed his father and shot himself.  My story ended better than Jared Loughner’s, who fired on Congresswoman Gabby Giffords. My story ended better than Eric Belluci’s,who (despite the existence of Kendra’s Law) killed both his parents with a hunting knife. My story ended better than Kelli Stapleton’s, who became so frustrated with the lack of support that she took her daughter to the woods without planning to return.

I still fear, as every parent of a child with a serious mental illness fears, that my son’s story may end like Kelly Thomas’s—that he will be beaten or shot by law enforcement officers who lack training in dealing with people who have mental illness.

These stories—my own and millions of others—are why I strongly support Representative Tim Murphy’s proposed comprehensive legislation to overhaul a broken mental health system. I was one of the parents who testified in an initial fact-finding forum, where Rep. Murphy and his colleagues asked what families need to help our children. You can read my op-eds in the Idaho Statesman and  Hartford Courant, both of which outline briefly why this legislation is so important for families like mine.

But the critics of HR 3717 are out in full force. Their position is pretty well summarized on psychcentral.com author Jon Grohol’s blog post, “The Lie of Focusing onThose with Serious Mental Illness,” written in response to mental health advocate DJ Jaffe, who dared to address the opposition’s elephant in the room: funding. Representative Murphy’s bill would restructure SAMHSA and require accountability through evidence-based outcomes. And some people are afraid of that.

I actually agree with Grohol about a few things. There’s no question that ADHD or anxiety or OCDs can make life difficult for those who have these conditions. And he’s right about arbitrary lines drawn in the mental health community—I cannot tell you how often I have heard the phrase, “Well, my son has autism. That’s just a developmental disability, not a mental illness like what your son has.”

But Grohol is incorrect in stating that supporters of Murphy’s legislation don’t think everyone with any kind of mental illness—not just serious mental illness—deserves treatment. As for the “lie” of serious mental illness? Here’s the thing. People with serious mental illness are NOT treated better or with different resources, as Grohol contends. Too often, they are not treated at all—at great cost to individuals, families, and communities. There are ten times as many people with mental illness in jails as in hospitals—read author Pete Earley’s excellent response, calling this fact “a national scandal.”

My biggest problem with Grohol’s argument is this statement: “What’s not needed is cramming forced treatment laws down state’s throats — even if their own citizens don’t want them.”

Forced Treatment. Wow, that sounds horrible! Kind of like the Death Tax—remember how the Republicans so brilliantly re-branded the estate tax, which affects a very small percentage of Americans, and made us all afraid that we would have to pay it?

We’re not talking about “forced treatment” here. We are talking about saving lives of people who, as a symptom of their illness, may not be aware of their condition. And the correct term is Assisted Outpatient Treatment or AOT. Already in the U.S., 45 of 50 states have AOT laws on their books, because they recognize that these laws help people with serious mental illness, save money, and improve communities. The fact is that AOT laws work. They improve the lives of people with mental illness and help their families. They reduce recidivism. Most important, they keep people with mental illness out of prison.

Let’s go back to my first night in the emergency room with my son. He had a double ear infection. The doctor was able to soothe his pain with a topical solution and sent us home with a prescription for antibiotics. The next day, he was a (mostly) cheerful preschooler again.

But the person who was in the car accident likely faced many months of recovery. I see mental illness in the same way—no “arbitrary lines,” no “Balkanization,” just sound, medical treatment decisions about urgency of care. I’m not saying my son’s bipolar disorder is somehow “better” or “more important” than your child’s ADHD. But the reality is that your child’s ADHD probably won’t land him or her in jail.

That’s not my reality. 

Trollegitimi non carborundum

A simple cure for trolls: crack an egg on their heads!

Trolls offer simple, wrong solutions to painful, complex problems

One of the most astonishing benefits of the Internet is that it has made us all instant experts about other people’s lives.  We can skim a Facebook status update and immediately diagnose the obvious causes of and solutions to a child’s mental illness, where trained therapists and psychiatrists have tried for months or years to provide answers.  In fact, some of us are such “experts” that we just can’t quit posting—we have to argue our point until it is dead, buried, and reincarnated as a three-toed sloth somewhere in Madagascar. Then we have to hunt down the sloth, kill it again, bury it, and…

The Internet community has a name for people like this: trolls. 

I’m not exactly sure where this term comes from. Is it because they lurk under blog posts, coming out to challenge any viewpoint that disagrees with their own? Or is it just because they are really ugly, mean people? Or some combination?

I have a theory. I don’t think that trolls are actually mean people. I think if a troll were standing behind me in the grocery store checkout line, s/he would be perfectly pleasant. We would probably talk about the weather, because that’s just what people tend to talk about when they are not on the Internet pummeling people with their brilliance (in ALL CAPS, of course).

Trolls are especially good at diagnosing the simple, unambiguous cause of my child’s mental illness. It's definitely one of these:

• No father/stepfather/male role model in the home.  
• Violent video games.
•  Red Vines/vaccinations/gluten/casein/soy protein/no soy protein (etc.)
• Demons
• Me (bad parent, poor prenatal care, not enough discipline, too much discipline, etc.)
• My child (willful, disobedient, etc.)

Trolls offer equally simple proposed solutions:

• Find a new dad for my kids (aside: could someone make a Disney movie about this one please? Because I would really love to see the Disney movie where Dwayne Johnson comes into the single mother’s life and rescues her kid—oh wait, that was Journey 2: The Mysterious Island  and it was like my FAVORITE MOVIE EVER!)
•  Only let my teenage sons play games based on “MyLittle Pony.”
• Dietary supplements. Lots of expensive dietary supplements.
• An exorcism (when I told my priest about this, he looked at me and laughed).
• Crack a raw egg on my kid’s head.

Yeah. I’m actually not going to do any of those things (though the supplements are tempting, so tempting! Also, the egg, but mostly because that seems like it would be kind of funny.)

But I am also not going to criticize anyone who claims that any (or all) of these solutions has worked for their child. Because you know what? We all want something that works for our kids.

And that, to my mind, is the place where many of those mental illness trolls come from. They’ve found a “simple” solution that works for them—so they assume that it will work for me. They want to help me, to educate me, to enlighten me, in ALL CAPS. Why would I give my kid a Zyprexa when I could have him on a gluten-free diet instead? (Zyprexa is a nasty drug, by the way. I’m not even going to attempt to argue otherwise. But sometimes there are worse evils).

I’ve found H.L. Mencken’s oft-quoted bon mot to be more indicative of my actual experience with my own son:  “There is always a well-known solution to every human problem--neat, plausible, and wrong.”

In too many cases, that “well-known” solution continues to be mother-blame. I recently posted a portion of a tragic email I received from a desperate mother in Colorado. This is some of what she wrote (reprinted with her permission and in her exact words):

My 9 year old son has a mood disorder with severe anger problems and after 3 hospitalizations for hurting himself and other people, being kicked out of schools, after school programs and summer programs, I finally asked social services for help. Social services placed him in a residential facility, but in order for that to happen; I had to give up partial parental rights. Meetings were set up with social services, GAL, residential therapist and me to come up with a safety plan for my son to return home. After my son failed the first step in the safety plan, the group still pushed him to come home, but I denied him to return home for safety reasons.

Within a few months I received paperwork in the mail that the GAL placed a motion for me to lose my parental rights stating that I was an unfit parent and that I abandoned and neglected my son. The GAL felt that my son was institutionalized and he needed a loving home for him to get better. The court dd side with the GAL and my parental rights were taken and so was my son. It has been 6 months since I’ve seen or talked to him; my family is able to see him, but I am not allowed to and social services are holding all my gifts, letters and cards until he is stable. A foster family did come along, but within 4 weeks, they told social services that he will not work out for them because of him being unsafe. I feel that I am being abused by the system and being punished for advocating for my mentally ill son. I feel that I am not the only mother going through this.

Most people had the same reaction I did to this story—horror and sadness for the mother. But one sincere and well-meaning gentleman had to make the point—again and again—that the state could not possibly take this woman’s child from her unless she was an unfit mother. Which meant that she was probably a single mother. Because everybody knows that single mothers are the cause of boys’ mental illness. Etc.

The thing is, this mom’s story does NOT imply in any way that she was a bad mother—in fact, her attempts to get help for her son in the face of overwhelming odds show that she is a good mother. It’s the system, to my mind, that is at fault here. Why would the state terminate her parental rights? Why would they try to place her child in foster care, rather than working with her and providing access to resources?

Why indeed. I encourage everyone who does not realize how common this mom’s heartbreaking story is to become acquainted with the Bazelon Center for Mental Health Law. Here is what the Bazelon Center has to say on the subject of relinquishing custody: 

Parents forced to make this devastating choice are victims of an irrational and wholly inadequate system of insurance coverage. Employer-based health insurance may cover outpatient therapy and acute hospital care, but the intensive community-based services (such as wraparound services) required by many children with serious disorders are typically beyond the reach of private insurance. As a consequence, working families who cannot pay out of pocket for such services must forego essential care for their child, often with dire consequences, or relinquish custody to the state so that the child will become eligible for public insurance, typically Medicaid. 

Parents are asked to give up their rights because the state wants the money that attaches to a child who has mental illness. There it is. That answer is not as simple as blaming the mother. But it makes a whole lot more sense, if you stop and think about it before hitting “post.”

And that’s what I’m asking here, troll-folks. Let’s all stop to think, just for a minute, before making a potentially hateful and hurtful comment about an issue that might be more complex than it appears at first glance.  Apology accepted. 

P.S. The "clever" title is not my own--the inimitable Xeni Jardin from BoingBoing tweeted it a while back. Loosely translated, it means "don't let the troll bastards get you down." Words to live by.