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Friday, July 17, 2015

To the Parents of James Holmes

The World May Blame Your Son, but We Know the Truth, and We Support You
10 million children will grow up to be adults who have
serious mental illness like James Holmes. Like our children. 


Twenty doctors agree that James Holmes has schizophrenia, a mental disorder that has been described as “young person’s dementia.”   But the fact of his illness did not prevent Colorado jurors from finding the young man, who opened fire in an Aurora theater in 2012, guilty of 24 counts of murder in the first degree, two counts for each victim.  After the verdict, a girlfriend of one of the victims declared, “This is a huge step forward.” 

The shooting was truly awful, and the grief and even anger of the victims’ families is entirely comprehensible. But the parents of the ten million U.S. children with serious mental illness, children like James Holmes, feel differently. We see the verdict as a huge step backward, a clear message that the stigma and discrimination associated with mental illness is as strong as ever, and that the public’s fear and ignorance of mental illness have not abated since 2012.

Mass shootings are incredibly rare, representing only two percent of all gun violence in the United States. Yet the daily tragedies—incarceration, homelessness, suicide—that disproportionately affect our children who have serious mental illness do not make the headlines.

In December 2012, after another mass shooting involving a young man who likely had serious mental illness, I wrote an essay sharing my own family’s struggles to find mental healthcare for my then 13-year old son. The essay, “I Am Adam Lanza’s Mother,” became a rallying cry for mothers who had tried and failed for years to find treatment that worked for their children.  As a result of my cry for help, my son was diagnosed with bipolar disorder and got treatment that works. Today, he is in a mainstream school earning good grades, hanging out with his friends, and planning for college. With treatment, my son is no more likely to be violent than anyone else.

In the wake of the Newtown tragedy, I was also able to connect with a passionate community of mental health advocates. Eight of these mothers, all powerful advocates in their own right, wrote letters to Robert and Arlene Holmes.  Here is some of what they shared:

Last summer my 12-year-old daughter Morgan was charged with the crime that would be dubbed by the media as the “Slender Man Stabbing.” One moment she and her two best friends were eating donuts at my kitchen table. The next moment, she had been charged with a crime of unimaginable violence, and was torn suddenly and unexpectedly from my home. You have expressed feeling guilt for not knowing your son had mental illness. I know how that feels. I didn't know that my daughter was sick, either.—Angie Geyser

We managed to keep our son out of the criminal justice system until 2012. He does not think he has a mental illness even though he has spent the majority of his adult life in locked psychiatric facilities. Today he sits in jail awaiting a bed in a state hospital. We all believe in treatment before tragedy!—Teresa Pasquini

It wasn’t your beautiful son who hurt all those people.  It was the untreated brain illness that is so misunderstood.  It is my hope that we can educate people to understand that people with schizophrenia are not evil; they are ill. —Kathy Day

More children in this country die by suicide than cancer, diabetes, and every birth defect combined, but somehow, trying to keep our son alive was considered “bad parenting.” We learned that our son’s illness is in his brain, not in his upbringing. We could have so easily been where you are.—Tom and Chrisa Hickey

I hope your son is judged with compassion and given the help and care he needs. I also hope you know that you are not alone in this. We have a community of parents and caregivers of those with serious mental illnesses, and we care and support each other.
—Marcie Bitler Sohara

Our son was an adult now, and his right to have irrational thoughts flying loose in his mind were supported by maladaptive laws written in the 1960s that make one thing crystal clear: after age 18, our boy would have to present as a “danger to self or others” if he was ever going to be returned to a safe residential facility. The deinstitutionalion experiment has cost countless lives; families have lived with personal tragedies of lost loved ones for decades without anyone taking notice. Only when our sick kids explode in the community do people share an opinion. You are not alone. —Jennifer Hoff

Please don’t blame yourself. It’s not your fault; it’s not your son’s fault; it’s not your husband’s fault. It’s your son’s brain disease. It’s our broken mental health system. It’s the lack of funding to find a cure and lack of education to each school administrators, family members, judges, law enforcement, and lawmakers. —Marla Durkin-Pope

My hope for you both is that you find comfort and kindness in those of us who, even in a small way, understand and empathize with the experience you now have to go through.  We wish you could have known earlier that there were people much like you, struggling to find answers, comprehend, and keep ourselves afloat. —Jenifer and Jim Walsh


Their letters are reprinted in full with their authors’ permission below.

***

Dear Robert and Arlene,

We want you to know that you are not alone. There is an entire community of parents who understand and support you. We are the mothers of children who have been diagnosed with serious mental illness. Some of our children have committed violent crimes, and some of us simply understand how these tragedies can occur as a result of a brain disease.

Last summer my 12-year-old daughter Morgan was charged with the crime that would be dubbed by the media as the “Slender Man Stabbing.” One moment she and her two best friends were eating donuts at my kitchen table. The next moment, she had been charged with a crime of unimaginable violence, and was torn suddenly and unexpectedly from my home.

You have expressed feeling guilt for not knowing your son had mental illness. I know how that feels. I didn't know that my daughter was sick, either. She was only diagnosed with schizophrenia after being declared incompetent to stand trial and being evaluated at a state psychiatric facility. I feel as though my guilt for not knowing Morgan was sick will forever consume me from the inside out.

Please do not hesitate to reach out to us for support. If you feel uncomfortable doing that, please know we all hold you close to our hearts.

Angie Geyser

***

Dear Mr. and Mrs. Holmes,

I am the proud mom of a 32-year-old adult son who has a 16-year history with serious mental illness. He was diagnosed at the age of 16 with bipolar disorder following his first hospitalization. He has been involuntarily hospitalized over 50 times. His diagnosis has changed to schizoaffective disorder. He suffers from a lack of insight, which is called anosognosia. He does not think he has a mental illness even though he has spent the majority of his adult life in locked psychiatric facilities.

We managed to keep our son out of the criminal justice system until 2012 when he was arrested while on a hospital unit at Napa State Hospital in California and charged with assault. He has been deemed incompetent to stand trial four times. Today he sits in jail awaiting a bed in a state hospital.

In May 2015, I travelled to Washington DC to speak on Capitol Hill about my family’s tragedy. I joined families from across the nation who refuse to be silent and let our families and communities continue to suffer. We all believe in treatment before tragedy!

Your son and your family are in my heart and thoughts. We are with you, and you are not alone.

My best,
Teresa Pasquini

***

Dear Mr. and Mrs. Holmes:

My family member suffers from schizoaffective disorder with constant psychosis. There’s just something about psychotic illnesses that make us all feel alone.  It’s so isolating.  In James’s case, it’s worse because his illness impacted so many others. The system should have provided treatment to him to prevent tragedies that happen too often.

I’m so thankful that my family member has not hurt anyone--yet.  But for the last four months, he’s mostly stayed in his room.  He lives in fear every day because his “spirits” constantly threaten his life.  I can’t leave him alone at times, because his fear of being killed is so great.  I worry that these spirits will cause him to act out and hurt himself or someone else.  I know that my loved one could experience what your son’s illness did to him.

I’m fortunate because he lives with me.  I can keep an eye on him and am aware of changes that could be red flags.  You weren’t in the same town, let alone the same state as James.  There is no way you could have known what his illness was planning.

And that’s just it.  It’s the illness that controlled him.  It wasn’t your beautiful son who hurt all those people.  It was the untreated brain illness that is so misunderstood.

I hope James gets the treatment he needs and deserves.  And I hope you both can have some peace.  You hear some very ignorant statements about your son.  It is my hope that we can educate people to understand that people with schizophrenia are not evil; they are ill. 

I’m sending good thoughts to you and your family.  I hope you know that you are not alone, and there are many of us who would welcome you!

Sincerely,

Kathy Day

***

Dear Robert and Arlene:

People look at me cross-eyed when I say we're lucky my son Tim was diagnosed with schizophrenia as a child. 

He was 11 when we first got the diagnosis, the last in a long line of them, from autism to speech disorders to depression and bipolar disorder. He was in a psychiatric hospital when he was diagnosed, after a suicide attempt that forced us to acknowledge he was sick.  Three years and 11 hospitalizations later, we made the agonizing decision to put Tim into long-term residential treatment because he was so delusional and so violent that we feared for his safety, our safety, and the safety of our other children.

We were alone then. We were accused of filling him with poisonous medication because we didn't feel like creating structure or enforcing rules. Strangers cursed us when he had a meltdown in public. Acquaintances felt justified in beating their breasts and declaring they would never send their children away. More children in this country die by suicide than cancer, diabetes, and every birth defect combined, but somehow, trying to keep our son alive was considered “bad parenting.”

In residential treatment, Tim learned what it was like to live without the voices. And since he was still a child, we were able to ingrain in him the importance of his meds and therapy to keep the voices at bay. We learned that our son’s illness is in his brain, not in his upbringing. He's 21 now.  He can never be left alone for more than an hour, or his anxiety and paranoia kick in.  He takes his meds, and today, they are working.

But I remember watching him being frisked by the sheriff we had to call after he broke every door in the house and threatened to kill us. There's a razor thin line between that day and today. We spend every day staving off a return to that day.  We know we're lucky to have the opportunity to do so. We could have so easily been where you are. 

We will continue to keep you in our prayers. 

Tom and Chrisa Hickey

***
Dear Robert and Arlene,

I have a 26 year old son who has been diagnosed with paranoid schizophrenia. He was only 19 when he had a complete break with reality, and we were able to get a diagnosis. I have been luckier than most because he knew something was wrong, and we were able to get help; however, I am fully aware that might not have been the case. I tell you this because I want you to know that the pain and the suffering you and your son are going through are always on my mind.

I know that the seriously mentally ill are operating with a sick brain, and your son’s actions were due to that sickness. I hope your son is judged with compassion and given the help and care he needs. I also hope you know that you are not alone in this. We have a community of parents and caregivers of those with serious mental illnesses, and we care and support each other. I hope you can find us and take some comfort in knowing you are not judged by us.

Sincerely,

Marcie Bitler Sohara

***

Dear Arlene and Robert,

I want to thank you for speaking up in response to the “evil” and “monster” taglines used liberally by the media towards your son James. Thank you for being brave enough to endure people spewing anger and hatred towards you as you attempt to educate our nation on the painful reality that serious mental illness can be fatal if left untreated and how a devastating psychiatric diagnosis like schizophrenia can wreak havoc on an individual’s life, stealing the ability to reason and decide rationally and potentially leading to tragic outcomes.

I cannot imagine how you must feel as parents, going through the courtroom experiences when what your son really needs and deserves is to be in a psychiatric hospital. I understand personally about losing an adult child to an illness that steals his mind and free will, and I know what it is like to watch helplessly as people judge and condemn your child for behaviors resulting from a brain that is too sick to understand the consequences.

My 22-year-old son is mentally ill and spent the majority of his childhood and all of his adolescence in clinical day programs or locked residential facilities “for safety.” Despite the fact that he was disabled, receiving SSI, and was never was never able to manage his life in a safe manner, when he aged into adulthood, he received his shoe laces back and a plane ticket “home “and free reign to manage his life completely without “interference from his parents” (his case manager’s words).

Within months of returning home, he had multiple run-ins with the law, several psychiatric hospitalizations, and he was kicked out of two group homes. We begged our county health department to put him in a hospital. We presented 500 pages of medical records and his doctors’ letters advising he be reinstitutionalized for treatment of his illness. This meant nothing to Orange County. Our son was an adult now, and his right to have irrational thoughts flying loose in his mind were supported by maladaptive laws written in the 1960s that make one thing crystal clear: after age 18, our boy would have to present as a “danger to self or others” if he was ever going to be returned to a safe residential facility. There was nothing his father and I could do but watch helplessly as he was consumed by the revolving door.

He went missing for days at a time, and started smoking pot and drinking often. We were constantly worried, not only of what would happen to him but also about collateral damage that might be inflicted in the community. Less than 36 hours after his last release, he walked into Bank of America with a threat scribbled on a sticky note to blow up the place if the teller didn’t hand over a thousand dollars. He will spend the next 13 years in the California State Prison. He has spent many months in solitary confinement and now has “Crazy Boy” literally tattooed across his young face; despite this, he has been denied his psychiatric medicine because he is not “sick enough.” in other words, we have to wait until his mental state declines even more before he qualifies for his psychiatric meds that he has taken since age 12.

Our jails have become hospitals, but they use pepper spray instead of a syringe. Nearly percent of prison inmates have a serious mental illness. The deinstitutionalion experiment has cost countless lives; families have lived with personal tragedies of lost loved ones for decades without anyone taking notice. Only when our sick kids explode in the community do people share an opinion. You are not alone. I am praying for everyone who has been impacted by our broken mental health system and for treatment for James.

Kindly,

Jennifer Hoff

***

Dear Robert and Arlene,

I have a 30-year old daughter who has been sick since high school. When her problems first started, we took her to psychologist who diagnosed her with “normal teenage defiance.” For ten years, no one knew what was going on in her beautiful sick brain. They call it “presenting well.” In secret, she sees aliens, a FBI informant, the Messiah, and I can go on and on. Finally, after ten years, her illness got so bad that other signs related to schizophrenia became apparent.

It took three misdiagnoses from professionals and education on my part to really grasp what was going on when those external signs started to become apparent. Please don’t blame yourself. It’s not your fault; it’s not your son’s fault; it’s not your husband’s fault. It’s your son’s brain disease. It’s our broken mental health system. It’s the lack of funding to find a cure and lack of education to each school administrators, family members, judges, law enforcement, and lawmakers.  

There are many parents like you out there who support you, love you, and will be there in spirit with you every day in that court room! Please come to our groups on Facebook. You have a support system of loved ones whose family members have a brain disease like your son. Become advocates. You have the support to fight for your son’s life, and his life matters!

Hugs!

Marla Durkin-Pope

***

The bravest are the most tender – The loving are the daring. –Bayard Taylor

Dear Robert and Arlene,

Underneath the sullen and distant façade lies the heart of a sweet young man.  Our son longed to be free. 

At the tender age of 13, our son attempted to end his life so that he would no longer be tormented by the voices, commands and “Book” in his head that told him to do things.  Our son struggled with violence at home, epic meltdowns, running away, isolation, threatening suicide constantly, and enormous anxiety and paranoia since age 7.  I read more than I ever thought I could read.  I was mocked by psychologists and condescended to by psychiatrists, until my son’s suicide attempt resulted in a diagnosis of early onset schizophrenia. 

When he had his psychotic break, he spent 42 days in a behavioral health hospital, where he was finally put on the last resort medication.  We are grateful and fortunate that it is working for him and keeping the suicidal ideation and hallucinations away.  We also know the damage that has been done to our family.  Another of my sons has a serious mental illness as well.  We struggle.

My hope for you both is that you find comfort and kindness in those of us who, even in a small way, understand and empathize with the experience you now have to go through.  We wish you could have known earlier that there were people much like you, struggling to find answers, comprehend, and keep ourselves afloat.

Brene Brown shared “Empathy’s the antidote to shame: The two most powerful words when we’re in struggle: me too.”

Your family is in our prayers.  Please let yourselves be supported.

With love,

Jenifer and Jim Walsh


Monday, November 3, 2014

Dear Claire Dunphy

From one soccer mom to another, here’s why your Halloween Insane Asylum of Horror was anything but awesome

I'm going with Awesomeland.
You may remember seeing me at the soccer field, the grocery store, the PTA meetings. Like you, I’m pretty Type A when it comes to raising my kids; for many years, I viewed birthday party goody bags as a competitive sport. But then something happened to my family that I wouldn’t wish on anyone: my second son began to show symptoms of a serious chronic illness.

By the time he was in preschool, we knew something was not right. At first, they said maybe it was autism. Later, they would tell us it was Oppositional Defiant Disorder, or Intermittent Explosive Disorder, or Attention Deficit Hyperactivity Disorder. There were so many labels and different medications! We took parenting classes, got on wait lists for specialists, and restructured our entire family’s life around the child who had an illness, as many families in our situation do. We also became increasingly isolated from our friends and community, as it became harder and harder to manage our son’s behavioral symptoms.

In the midst of the struggles to find an answer, my marriage disintegrated. It was not my son’s fault. But the stress of raising a child with a serious illness can prove overwhelming sometimes. And suddenly, like many other single moms, I was doing it alone. I remember one time at the soccer field, when my son’s shoe came off, and he couldn’t fix it, and he collapsed, wailing and screaming. I will never forget the look of absolute disgust on your face and the faces of other parents that day, the look that said, “What’s wrong with that mom? Why can’t she control her kid?”

Or the time in the grocery store when my son was screaming “Child abuser! Child abuser!” at me and you threatened to call the police and took down my license plate number. Fortunately, the store manager protected me. “I understand,” he whispered to me. “My nephew has autism.”

Or the time you stood at your front window and gawked when I called the police on my own son, because in America, that’s what we have to do when our children have an uncontrolled brain attack. You stared as three policemen put my son in handcuffs and carried him twisting and screaming to the back of their car. You didn’t hear the policeman say to me, “You’re a good mom, ma’am. Never forget that. We know your son needs help, and we will help him to get it.” (God bless our crisis intervention team-trained police department!).

When you found out my son was in an acute care psychiatric hospital, you didn’t offer to watch my other children so I could visit him. You did not bring me a casserole. Mental illness is not a casserole disease, I guess. Fortunately for us, after nine years, my son finally got the correct diagnosis. I was relieved when I found out he had bipolar disorder, because I respect and admire my friends and acquaintances who are successfully managing their bipolar disorder and living productive, happy lives. This was the future I had thought my own child could never have. Suddenly, we had hope.

I’m a soccer mom like you, Claire. And what happened to my child could happen to your child. Mental illness is not a choice or a character flaw. This is why your Insane Asylum was so offensive to me and to my son. It’s not funny to ridicule people who are sick. Worse, the image of mental illness you portrayed is not remotely what mental illness really looks like.

You seemed to recognize your cruel mistake when your neighbor Ronnie lied to you and told you his wife had spent six months in the “cuckoo farm” (lovely words, those). But what about all the real people—children included—who could have been harmed by your Halloween “joke”? What message did you send your own children? My son has worn a straitjacket too, but his was during a behavioral episode. And like many children with mental illness, he has been institutionalized, though we don’t really have insane asylums anymore. We have something far worse: prison. My son was in juvenile detention four times before he was 12 years old, not because he's a bad kid, but because he had behavioral symptoms of a brain disease.

Claire, here are some truly scary facts about mental illness:
  •  In any given year, only 20 percent of children who need treatment for psychiatric disorders actually get it. 
  • Half of all mental illnesses start before the age of 14. 
  •   65-75 percent of youth in juvenile detention have at least one mental illness.
  • It costs states $5.7 billion per year in the U.S. to incarcerate an average of 93,000 youth. 
  •  There is not a single child psychiatric hospital bed in Orange County. Not one. 
  • One in five people with bipolar disorder (what my son has) die by suicide. 
  • Worldwide, suicide is the cause of death for more than 800,000 people each year. 
  • Adolescent males with mental illness are being shot and killed by police in ever increasing numbers. 

Many people have defended your actions, saying “It’s Halloween! She was just having fun!” Others have accused me of focusing too much on political correctness. But I don’t think I’m out of line in asking for some basic respect from you. We talk a lot about the word “stigma” when we talk about mental illness. But what we really mean is “discrimination.” Your unrealistic and negative portrayal of mental illness perpetuates that “us vs. them” mentality that allows those of us who are not living with it to continue thinking mental illness is a choice, or that it is caused by bad parenting.

So Claire, as a fellow soccer mom, I’m officially asking for an apology. Your Insane Asylum of Horror, had you let it stand, would truly have been the most frightening house in the neighborhood. But for different reasons than you think.

P.S. To the writers of Modern Family: one in five children in the U.S. will suffer from a serious and debilitating mental disorder at some point before age 18. You have five children on your show. I challenge you to introduce mental illness for one of those children into next season’s plot line. You could use your platform to change people’s perceptions about mental illness in real and meaningful ways.

Saturday, November 22, 2014

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.




Monday, December 16, 2013

I Am Not Adam Lanza's Mother

Now that we’ve talked about mental illness, when will it be time to act? 
Photo by Charles Mims, October 2013
Republished from The Blue Review, December 15, 2013 

On the morning of December 14, 2012 I closed the door to my office and started to cry as the news of a tragic school shooting in Connecticut blew up my Facebook and Twitter feed. My then 13-year old son “Michael” had been in Intermountain Hospital for two days, placed there against his will after an inexplicable and violent episode of rage he couldn’t remember. After years of struggles, we still didn’t know what was wrong, or how to help him. I was exhausted, sad and afraid. The isolation of living with a child who had a serious, undiagnosed mental illness made me feel like there was no hope for me or my family. 

That night, I sat down and wrote my truth. I told about the years of missed diagnoses, medications that didn’t work, costly therapies. I wrote about my worst fears for my son’s future. And as a national tragedy beyond comprehension intersected with my personal sorrow, I called for a conversation about mental health. My cry for help, which I published on my formerly anonymous blog, “The Anarchist Soccer Mom,” was picked up by The Blue Review and republished under the title “I Am Adam Lanza’s Mother.” The essay was shared everywhere. Many people wrote me to say, “You told my story! I am Adam Lanza’s mother too!” But a few excoriated me for talking openly about my son’s struggles with mental illness. 

One year after the Newtown tragedy, where has that conversation about mental health led us as a nation? The official report about the school shooting at Sandy Hook Elementary School could be summarized in five words: no answers, lots of guns. Lanza’s mental illness was certainly a factor. As the report notes, “the shooter had significant mental health issues that affected his ability to live a normal life and to interact with others, even those to whom he should have been close.” Like his mother. 

As the one year anniversary of the shooting approached, with yet another school shooting in the news, policy makers were paying more attention to mental health. After meeting with the families of the Sandy Hook victims this week, Vice President Joe Biden, whose initial response to the tragedy was to push for tighter gun control, announced a $100 million increase in funding to help people access mental health services. Half of the money will come from the Affordable Care Act; the other half has been pledged for rural mental health care, which should be welcome news in states like Idaho. 

Lots of things have been promised. For example, when the state mental hospitals closed, we were promised community based care. That never happened. The fact is that in December 2013, one year after Newtown, if you or a loved one is in crisis, you still have to call the police. And we continue to use prisons as the new institution to treat our adults and children who have mental illness. 

In the past year, I have slowly found my voice as an advocate for children’s mental health. I haven’t done it alone — my son has joined me in calling for an end to stigma, by bravely speaking out about his condition on Nova and in a StoryCorps interview. We were honored to share an award for family advocacy from the Idaho Federation of Families, which my son placed prominently on our piano. 

Where is my family a year later? I’ve had quite a bit of time to think about what I wrote. And I can’t sugar coat it: the consequences of my decision to put my name on my story were devastating to us personally, as we learned firsthand just how harsh the stigma of mental illness can be. 

Yet there were also rewards. I researched and wrote a book, The Price of Silence. The book will be released by Hudson Street Press in the fall of 2014.which explores stigma and other barriers to mental health care for children and families as they try to navigate the healthcare system, public schools and the criminal justice system. I also had the opportunity to speak at TEDx San Antonio, where I asked the audience why we never see a picture of a child with mental illness in a grocery store checkout line. 

My family has also found some answers. Michael now has a diagnosis — bipolar disorder — and medication that works. I can’t tell you how much this has changed our lives for the better. A year ago, I had almost no hope for my son. Now, we are talking about where he will go to college (he says Harvard or Oxford, but he’s going to have to bring his math grade up just a little bit). 

Above all, I’ve learned this year that I am most emphatically not Adam Lanza’s mother. While I still feel a great deal of empathy for Nancy Lanza, who surely loved her son as I love mine, we are different in two important ways. First, by acknowledging the seriousness of my son’s condition, I am empowered to do everything I can to ensure he gets the treatment he needs. 

Second, I don’t own guns, and I never will. 

Some have speculated that perhaps guns were a way for Nancy Lanza to connect with her son. My son and I share some common interests too: writing, history and Greek mythology. As far as I know, a love of history never killed anyone. 

Still, I believe that in the futile search for answers, too many people continue to blame Adam Lanza’s mother, the first victim of the tragedy in Newtown. Emily Miller of the Washington Times is representative of that view. As she explained in her Op Ed piece that followed the release of the official Sandy Hook report:
"In the end, we can’t blame lax gun-control laws, access to mental health treatment, prescription drugs or video games for Lanza’s terrible killing spree. We can point to a mother who should have been more aware of how sick her son had become and forced treatment.”
If only it were that easy. Instead, numerous barriers still exist for children and families who need access to mental health care. In 1999, NAMI published a report called “Families on the Brink: The Impact of Ignoring Children with Serious Mental Illness.” That report addressed school shootings in the wake of Columbine:
"As we struggle to make the lives of all our children better in the wake of unthinkable school violence, we must not forget our children who have serious mental illnesses and their families who love them.”
On December 14, 2012, more than ten years later, we watched again in horror as we witnessed exactly how devastating that impact of untreated mental illness could be to a community — and very little if anything had changed for children and families who needed help. 

If 2013 was the year to talk about mental illness, let’s hope that 2014 is finally the year to act. 

Watch my interview with Marcia Franklin on Idaho Public Television’s “Dialogue,” December 13, 2013.

Saturday, April 19, 2014

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. 

Monday, December 25, 2017

Three Wise Women Visit the Baby Jesus

Christmas Carol 2017 




As I ran through the parts to this year’s carol yesterday afternoon, I realized that I have now been composing an annual carol for nearly 20 years. This year, I returned to three-part women’s music, the form I chose for my first carol in 1998. Back then, I had a different last name, and I had not yet discovered music transcription software. A lot of things have changed in 20 years, but my love for this season hasn’t. I still celebrate the god-man whose message of radical love for the stranger and the poor seems especially relevant in 2017. 


In the olden days, we had to write
music out by hand.
This year’s carol was inspired by the #metoo movement and the stories of women that have been suppressed for millennia. I’m certainly not the first person to imagine what a visit from wise women to the baby Jesus might have looked like. In fact, a quick Google search reveals various versions of this meme: “Three wise women would have asked directions, arrived on time, helped deliver the baby, brought practical gifts, cleaned the stable, made a casserole, and there would be peace on earth.”  There’s also a lovely feminist picture book by Mary Hoffman, which I plan to order as a late Christmas gift for myself.  

I took a different approach when I considered what the lost voices of women would have said to the baby Jesus and his mother. The religious historian Karen Armstrong, in her Short History of Myth, notes that humans need stories to tell us how to conduct our lives. Our current story of Christmas, with its relentless commercialism, is one that Christ—born in a stable, the child of refugees—would not recognize. The man who ostensibly leads our country, elected by self-proclaimed “Christians,” is the antithesis of everything that Christ stood for. 

In my version of the Three Wise Women myth, the women know that men will kill their god. To resurrect Christ in 2017, we have to resurrect the stories that mattered to him (hint: he did not say a single word about gay marriage or abortion, but he said a whole lot about rich people). 

In 2017, I trust the women. Merry Christmas. 


Three Wise Women Visit the Baby Jesus 
(What Child Is This?) 
By Liza Long 

In winter time, three women wise 
Went by the moon’s cold light 
To Bethlehem to see the god
Born under a new star’s light 
The Babe, the Son of Mary 

Each bore a gift for the newborn King 
More rare than silver or gold 
They gave his mother their offering 
And the infant's fate foretold, 
The Babe, the Son of Mary 

First Woman 
I bring a cloth of linen fine 
Hand-made upon the loom 
That weaves the fates of gods and men 
And spells the new god's doom 
The Babe, the Son of Mary 

Second Woman 
I bring a cup of potter’s clay 
Hand-fashioned, fired, and fine 
A cup to share at his last meal 
When his blood becomes the wine. 
The Babe, the Son of Mary 

Third Woman 
I bring a rose that blooms in snow 
Its petals soft and red 
A rose that pricks, with sharp, hard thorns 
That will crown his glorious head 
The Babe, the Son of Mary 

A cloth, a cup, and a rose 
Are the gifts the wise women chose 
For the Babe, the Son of Mary 

Then bring a cloth, a cup, a rose, 
Come peasant, princess to mourn him. 
While wise men kill him, wise women weep 
As they comfort the mother who bore him. 

A cloth, a cup, and a rose 
Are the gifts the wise women chose 
For the King of Kings, the Prince of Peace, 
The man, the god, from Galilee 
Who gave his life for you and me: 
The Babe, the Son of Mary. 

The Babe, the Son of Mary.







Wednesday, September 20, 2017

Doorways and Lifelines

My son is 18 now, and he deserves
affordable healthcare.
Why the Cassidy-Graham Healthcare Bill Must Not Become Law

Today, I am thinking about two-faced Janus, the Roman god of doorways. Today, my son crosses a threshold from childhood to adulthood. Last night, he went to bed a minor; when he woke up this morning, he was an adult.

He seems ready enough. I’m not sure I am.

Today, on my son’s 18th birthday, I woke up to the news that Republican senators are once again attacking healthcare protections that have provided an additional 20 million Americans with insurance, ended discrimination against those with preexisting conditions, and required that all health insurance plans cover essential health benefits. 

One of those essential health benefits is mental healthcare. The proposed Cassidy-Graham bill, a Republican end-run around true bipartisan healthcare reform, would destroy parity and end coverage for essential health benefits. For my state, Idaho, which failed to expand Medicaid under the Affordable Care Act, the proposal could devastate healthcare services for our neediest citizens.

The proposed bill would directly harm my son.

My now 18-year-old son has bipolar disorder, a chronic health condition that can adversely impact his quality of life. He manages his bipolar disorder well with medication, therapy, and support groups. But all of this comes at a cost. 
Republicans are standing at the
threshold. I'll be happy to
show them the door if they
take my son's healthcare away.

Before the Affordable Care Act, I was unable to afford a policy that covered my son’s mental health. I personally know several families who have gone bankrupt trying to pay for mental healthcare for their children

This is not the world our children deserve. Mental illness is not a choice or a character flaw, any more than physical illness is. Late-night talk show host Jimmy Kimmel has become a passionate advocate for affordable healthcare because of his infant son’s preexisting heart condition.   

I feel the same way about my now adult child’s bipolar disorder.

Is the Affordable Care Act perfect? No. Is it a lifeline for many millions of Americans who now have healthcare coverage? Undoubtedly.

Our country’s elected Republican leaders are standing at a moral threshold. If they don’t choose the right direction for healthcare, I will do everything I personally can in coming elections to show those heartless jerks the door.