Lest We Forget

Already we are planning memorials for the fallen.
Past memorials have included:

168emptystonechairsonabaregreenfield(19smallones)
58267namesetchedonablackgashofcollectiveangst
(2977+6)namesonbronzesneartwosquarereflectingpools
And the World War II Birthday Cake Extravaganza
(who can deny the Holocaust?).

Already (again) we are planning memorials for those
who fell,
who have fallen
who are falling
who will fall.

This is my fifth year of writing a poem a day in April.

How a Bill Doesn’t Become a Law

A Parent’s Response to Idaho’s S1114

This morning, I gave my first public testimony to the Health and Welfare committee of the Idaho House of Representatives about S1114, a bill that would consolidate currently fragmented mental health services into regional health boards with increased local authority. 

This sounds like a good thing, and it is, as a 2008 WICHE report demonstrated. 

So why was I there to oppose the bill in its current form?

Like all issues related to mental health and public services, it’s complicated. My primary reason for opposing the measure was its source of funding for those regional health boards. Rather than seek new appropriations, Idaho Behavioral Health Director Ross Edmunds proposed shifting funds from a Children’s Mental Health surplus.

Wait, hold on. Children’s Mental Health has a surplus?!?

The problem (and no one disagrees with me) is this: currently, the only way for children in Idaho to get access to mental health services is to be on Medicaid or to commit a crime. Yep, you heard me. If your kid needs resources, you have to charge him or her with a crime.

The criminalization of mental illness, especially in children, is just flat out wrong. It's bad public policy, and it ends up being costly and dangerous.

Here’s my direct testimony to the committee:

When my 13-year old son was admitted to Intermountain in December 2012, he screamed at the police officer who was trying to help him, “I wish I had a knife so I could run at you and you would have to shoot me.” I will never forget the look of horror in that brave officer’s eyes.

Later that week, my son’s social worker called and recommended that I press charges against him to “get him back in the court system so he can get the services he needs.” I am fortunate to have a good job with health benefits, but many of the services my son needs, like PSR and Occupational Therapy, are not covered by my insurance.

In “off the record” conversations over my many years of interactions with the Department of Health and Welfare, well-meaning social workers have suggested that it might be better for my son if I were a so-called “welfare mom” because I could get better access to services.

I realize that the focus of SB1114 is on adult mental health. But the lack of community support for parents of children with mental health concerns means hours of missed work, unpredictable schedules, the constant fear of a telephone call from the school, thousands of dollars in medical bills for services that aren’t covered. My family suffers. My other children suffer. And my son will be an adult all too soon.

We need a system that is proactive rather than reactive.  The bill in its current form is still crisis-based and does not really address the needs of children with mental illness in Idaho—in fact, it actually takes money from Children’s Mental Health to pay for reorganization of regional health boards, at a time when many parents, like me, are told that the only way they can access help is through the courts. But I believe that by focusing our efforts on early diagnosis, intervention, and ongoing treatment for our children, we can save money and lives.

After hearing my testimony and the testimony of a NAMI representative and mother Kathy Merce; Howard Belodoff, the lawyer who has been prosecuting Idaho’s landmark children’s mental health case Jeff D.  for 33 years, and Jim Baugh, Disability Rights Idaho Executive Director, the committee voted to send the bill to General Orders for further review.

And here’s why it’s complicated. In drafting this bill, Ross Edmunds has done an incredible job with limited resources. S1114 is a baby step, to be sure. But it’s a baby step in the right direction, creating greater efficiency, providing more regional control, and improving access to resources for people with mental illness in crisis. Sending the bill to General Orders rather than approving it as it stands runs the very real risk of allowing this important legislation to die on the House floor.

So I left the House today feeling both glad and anxious. I’m glad that my voice could be heard and that I could share my very personal concerns with the way we treat mentally ill children in Idaho. But I’m anxious that because I spoke, in the end, nothing will happen.

Welcome to democracy. 

After Newtown

My Statement to the U.S House of Representatives Committee on Energy and Commerce

On December 14, 2012, two days after I placed my 13-year old son in an acute care mental health hospital, the world changed.  The night of the Sandy Hook shootings, I wrote a blog post entitled, “Thinking the Unthinkable,” which included the shocking statement: “I am Adam Lanza’s mother.”

I’m not Adam Lanza’s mother. I’m Michael’s mother.  I love my son. But he—and I—and other parents and children like us—need help. Like many children with mental disorders, my son has been diagnosed with several conditions. Michael has taken a cornucopia of pharmaceuticals to try to control his rages. We have not yet found a combination of treatments and medications to manage his condition.

When I asked Michael what he wanted me to say to you, he said, “Tell them I’m not a bad kid. Tell them I want to be well.”

Michael is not a bad kid. Neither are the millions of other children who have diagnosed mental disorders in this country. And yet  we continue to manage mental illness through the criminal justice system. Too often, the only way loving parents can get access to much-needed services is by having their children charged with a crime.

My son Michael entered the juvenile justice system just one month after his eleventh birthday. While on probation, he received an array of social services including therapy and psychosocial rehabilitation, which taught him coping strategies. But once he completed probation, those services went away.

Before my blog went viral, I thought I was the only mother in America who was living in this kind of fear. But I learned I’m far from alone. 

Parents like me live in all kinds of fear. We live in fear of stigma—will my child be bullied for being different? Will my child be a bully? Will I be blamed for my child’s explosive behavior?

We live in fear of that unpredictable behavior—how will I know if my child is going to explode? What can I do to keep my other children and myself safe? What about his school and the community?

We live in fear of the future—what will happen when my child turns 18? Will my child harm himself or others? How will I pay for all the services I need to keep my child functioning?

Parents like me are struggling, physically, emotionally, and financially. And mental illness is still so hard to talk about, because the stigma—for parents and children—is real. But as long as parents continue to suffer in silence, the magnitude of this problem will only be recognized after tragedies like Newtown.  It’s time to talk about mental illness—and it’s time to act.

What do parents like me need from you? We need access to community-based resources. We need early and consistent behavioral intervention.  We need increased funding for the Individuals with Disabilities Education Act, as well as funding for school counselors and behavioral interventionists. We need increased research funding for effective treatments. And most of all, we need a national commitment to end the stigma that surrounds mental illness. As long as we keep treating mentally ill children—and adults—in prisons, it will be difficult for us to achieve true parity between physical and mental health.

Mental health is truly a bipartisan issue—a problem that keeps millions of American children and their families from enjoying “life, liberty, and the pursuit of happiness.” As a nation, we must explore creative and brave ways to provide a better life for children, families, and communities.

Link to the U.S House of Representatives Energy and Commerce Committee Forum: "After Newtown: A National Conversation on Violence and Severe Mental Illness."

Link to National Institute of Mental Health om Children's Mental Illness

Link to author, parent, and fellow panelist Pete Earley. 

The Anarchist Yoga Mom

How yoga keeps me sane and well

Almost one year ago today, a few weeks after losing a job I loved, I was standing in line at the grocery store when I got a call from my doctor. The results of a routine lab test were not good. I put down the milk, picked up a yoga mat, and headed to my first hot yoga class. Sixty days later, I emerged with a new body, and more importantly, a new mind.

Yoga saved me. The strength I found within myself on the mat, as I sweated and stretched and pushed myself past limits I thought I would never overcome, served me well in the coming months, as I faced challenges in my personal life that were also beyond what I thought I could handle.

That’s why I want to be a yoga teacher. When you find something that works, something that calms your mind, restores your spirit, energizes your body, you want to share that something with everyone you know. My surgery was successful. My job loss was temporary. The strength and poise and inner sense of peace I gained were far more valuable than what I lost.

Through the pain of loss, the universe gave me time to connect with myself. And yoga—which means union—was the instrument of that connection.

Today my son and I were featured in a Nova documentary on PBS with a truly awful title: “Mind of a Rampage Killer.” But the documentary itself, crafted by Miles O’Brien, told a compassionate and compelling story about families’ struggles with mental disorders. My son and I were honored and humbled to be a part of this critical conversation. We have learned firsthand the power of advocacy, of speaking out and sharing your story.

Mental health is an overwhelming problem for families everywhere. I think that yoga can be a part of managing this difficult illness.  The practice of yoga strengthens the body and mind. I want to share this path to strength and serenity with others, even as I continue to develop in my own practice.

One of my former yoga teachers used to say, “This is simple. It is not easy.” I have adopted this mantra as a guide for my own practice and my life. I have learned to accept myself, my limitations. I have learned to ask for help. I have learned to let go.

Today I introduced Gabriel Azoulay to our BikYasa class at Hollywood Market Yoga in Boise. Gabriel has practiced yoga for 20 years. His favorite pose is full camel because it opens the heart (my own favorite is camel because it gets rid of the excrement, if you know what I mean). Gabe developed Bikyasa because he wanted to share his practice with others. He is a knowledgeable, passionate instructor, and I am really looking forward to learning more over the next few days.

Yoga teacher training is the reason vacation days exist. The next few days (minus a few mandatory faculty meetings and appointments with my son’s healthcare providers) are all about me. That’s not selfish—it’s self-care. If your family is struggling, or if you are caregiver, take time for yourself. Consider coming to the mat, to Child’s Pose. 

Sometimes all we can control is our breath. And sometimes, the grace of that gift of breath is enough. 

From Anarchist to Advocate

Learning from the pros on Anderson Cooper’s “Guns under Fire”

It’s a standing joke among my friends: before my blog post about my mentally ill son went viral, I did not know who Anderson Cooper was.

Let me explain this grave lapse of cultural literacy. After September 11, 2001, I sat in front of our television in slack-jawed horror, watching the towers fall over and over, for weeks. Then one day, I looked away from the TV and saw my four year-old son building a tower out of blocks and crashing his toy airplane into it.

So I gave up television. I didn’t actually mean to give it up completely—I’ve always been an early adopter and figured we would have the content on demand by 2003. My timeline was a few years premature. And by the time technology caught up, I was no longer interested in TV.

Now I get all my news from Facebook. It’s the perfect mix of local (kids, pets, vacations) and national, and since my friends are so clever, I trust them to pick the New York Times and Wall Street Journal and HuffPost articles I should read.  In that respect, Facebook has been a real timesaver for me. Okay, I’m not kidding anyone here. Facebook is a complete waste of time. But since I’m not watching “Jersey Shore” or “American Idol” or “Downton Abbey,” I feel okay about it.

Still, it’s become apparent that my Facebook friends aren’t quite clever enough. Because if they were, they would have been as agog over Anderson Cooper as the blurred-face woman in the picture above (she looked like a four year old girl about to meet a Disney Princess).

Cooper is the real deal—whip smart, funny, compassionate, able to shovel through the bullhorn bullshit that passes as public discourse these days and emerge with a squeaky clean smile.

When Anderson Cooper 360 decided to do a town hall meeting on guns, the producer, Kerry Rubin, called and asked me to talk about my experiences as a parent of a mentally ill son.

I couldn’t say no. And it was one of the most amazing and humbling experiences of my life.

I got to meet Amardeep Kaleka, a gun owner whose father was killed in a rampage at a Sikh temple in Wisconsin. Sarah McKinley, who made headlines when she defended her home and her baby against intruders. Tio Hardiman, who works with Chicago’s youth to try to change potentially destructive behaviors and save lives. And Veronique Pozner, who lost her sweet young son in the tragic Sandy Hook shootings. 

Their stories all give nuance and complexity to a debate that too often looks like something drawn by toddlers with crude, bold crayons.

I also met Joshua Boston, the former Marine whose letter to Senator Diane Feinstein about her proposal to ban assault weapons also went viral. Josh is a passionate and articulate spokesperson for gun owners.

I shared a car on the way to the Town Hall with the inimitable Gayle Trotter, an activist, attorney, and mother of six who testified before the Senate Judiciary Committee about how guns actually make women safer. Gayle is as powerful an advocate for her Second Amendment rights as the Brady Campaign’s president Dan Gross (one of my oldest son’s heroes) is for gun control.

(In case you missed it, I’m not an anarchist—I’m a Libertarian. Not a big fan of laws, generally speaking. But also not a big fan of gun violence and school shootings.)

And I’m not a big fan of former NRA president Sandy Froman’s repeated use of the word “insane” on the program (at least she avoided “deranged” and “evil”). Every time she said it, I winced. Still, thanks to the First Amendment, Froman has every right to use that word, and while I wish she wouldn’t, I am not going to engage in ad hominem attacks (Dan Gross, on the other hand, was consistently respectful to people who suffer from mental disorders).

Highlights of the afternoon included meeting Cooper, Dr. Sanjay Gupta, Jeffrey Toobin, and watching Kerry Rubin in action—she’s like a conductor who takes raw notes on a score and turns them into a full orchestral suite.

In my own moment on camera, I got one good line in—“Why can’t we use our resources to make people less dangerous?” I don’t really remember the rest of what I said, just that Anderson Cooper’s eyes are really that blue.

In the end, Cooper couldn’t solve the gun problem in one town hall meeting. But he gave a hint at how to solve it when asked which team he favored in Sunday’s Super Bowl. Cooper responded with a grin, “Beyoncé.”

Sometimes when we can’t agree on something important (Ravens or 49’ers, for example), we have to look for something we can agree on. I am grateful to Anderson Cooper and his entire team for an impartial and thoughtful contribution to a vital conversation about guns and mental health, and for including me in that conversation. 

It’s not easy to be an advocate, but sometimes our causes find us, even when we don’t expect them. I’m grateful for the opportunity to change a national conversation. Maybe it’s not about guns: maybe it’s about mental health.  

Find a Room to Welcome Him

It’s a miracle! My fourteenth annual Christmas carol is finished, and it’s not even midnight yet. I started this little tradition back in 1998, when I was directing a children’s choir and read about the composer Alfred S. Burt, whose lovely "Star Carol" was one of his annual Christmas compositions (in lieu of a card). I thought, “I want to try that!” So I wrote a simple carol for my choir about a stable, a manger, a star in the sky. My own children still love the song and sing it to me.

This year, I had planned to use Christina Rossetti’s lovely Thread of Life as my text—something about those telling lines, “Aloof, aloof, we stand aloof, so stand Thou too aloof,” seemed to match the mood of this dark season, haunted as we all are by theodicy, the enduring problem of evil in the world.

But I was struggling. The creative process is so mysterious to me. Sometimes music just pops out of my brain like Athena bursting from the head of Zeus. And sometimes I have to fight for every note, for every chord resolution. None of the chords in my Rosetti piece were going where I wanted them to.

Then on Christmas Eve morning, a dear friend posted these delightful words from Robert Herrick:

See him come, and know him ours
Who with his sunshine and his showers
Turns all the patient ground to flowers.
The Darling of the World is come,
And fit it is, we find a room to welcome him.

And there it was. THERE was this year’s Christmas carol. December to May. Winter’s chilling morn to verdant corn field. Showers to flowers. No, of course life is not that easy (believe me, I know!). But at Christmas, we celebrate peace. A baby. Family. I don’t want to sing the problem of evil in the world today. I want to sing the Darling of the World and find a room to welcome him (The amazing John Rutter has also set this text to music, so I am now in good company).

Critics will want to attack the curious transition from A major to G major in measure 6. I will freely admit that I was under the influence of sugar when I wrote that.  To make matters worse, I then got stuck in the relative F-sharp minor and “resolved” it all by sharping the tonic (A) to A-sharp in the last measure, ending in F-sharp major! I know, right? Like I said, sugar will do strange things to you. Or egg nog (oh, bite my tongue! Bite my tongue!).

A final note just in case someone happens to be actually reading this (apparently, my blog is not anonymous!). My ex is a good guy. He really loves his kids. So do I. It’s easy (and sometimes even a little bit fun) to judge people. But God or whatever mystery you sense in awe and apprehend wants us to love people instead. Try giving a little love this year, even to the people you don’t agree with.

Merry Christmas! 

A Joint Statement from Sarah and Liza

Many of you have seen Sarah's excellent blog in the past few days. I think she makes some important points about children's privacy. http://sarahkendzior.com/

We have been in contact, and I am truly impressed with her professionalism and her concern for children. We have written the following statement that we would like to share:

“We would like to release a public statement on the need for a respectful national conversation on mental health. Whatever our prior disagreements, we both believe that the stigma attached to mental illness needs to end. We need to provide affordable, quality mental health care for families. We need to provide support for families who have a relative who is struggling.

“We both agree that privacy for family members, especially children, is important. Neither of us anticipated the viral response to our posts. We love our children and hope you will respect their privacy.

“Our nation has suffered enough in the aftermath of Newtown. We are not interested in being part of a ‘mommy war’. We are interested in opening a serious conversation on what can be done for families in need. Let’s work together and make our country better.”

Thanks, all!