Three Years after Newtown: Hope

Parents for Care dinner in Baltimore, with
the SuperMoms (and Dads) who advocate for their
children who have serious mental illness

Three years ago, when a mother, 20 first graders, 6 educators, and a young man with untreated mental illness died by gun violence in Newtown, Connecticut, I was on the phone with a social worker in Boise, Idaho. He wanted me to press charges for assault against my then 13-year-old son, who had threatened to kill himself a few days earlier. My back and ribs still ached, and my arms were covered with bruises and bite marks sustained when I tried to keep my son from bolting into oncoming traffic.

When I heard about Newtown Friday morning at work, I put my head on my desk and sobbed. My younger two children were still in elementary school, and I couldn’t even imagine how horrible it would be to lose them like that.

Except I could.

With Representative Tim Murphy

My third son was in an acute care psychiatric hospital--again. After years of trying to find help for him, we still didn't have answers.

But I knew two things for certain that morning. First, my son was not a bad kid. He was not a monster, or a psycho. He was a kind, sweet, sensitive boy who suffered immense pain and deserved help.

Second, I was not a bad mother.

That terrible morning in 2012, without knowing any details other than the age of the shooter and the fact that his mother--and 26 innocent people--were dead, I felt like I knew everything.

So I wrote, "I Am Adam Lanza's Mofher." And I thought I was the only mother in the entire world who could sympathize with Nancy Lanza.

It turns out I was far from alone. Mental illness touches us all in some fashion. According to the National Institute of Mental Health, one in five children will suffer a debilitating mental disorder before age 18.  Almost one in five adults will experience mental illness in any given year (excluding substance abuse disorders). l  And serious mental illness—schizophrenia, bipolar disorder, and major depression—affects 10 million adults, or 4% of our population.  These men and women are too often shunted into a nightmarish “revolving door” of prison and homelessness because we do not have the community or medical supports in place to provide them with life-saving treatment. 

A reading from my award-
winning book at StoryFort

Three years after Newtown, I was able to travel around the country and see what's working in mental health--and why we still have so far to go. If you want to learn more about ways you can help children and families like minhe, click on the links below to learn more about these organizations, and think about donating if you are able to do so.

In January, I made my first trip to Washington D.C. as a guest of the Treatment Advocacy Center to celebrate an advocacy award given to Representative Tim Murphy for his tireless efforts to reform the mental healthcare system at the national level. 

In February, I spoke at the Jewish Family and Children’s Services of Arizona annual luncheon in Phoenix, where I was able to learn about crisis wraparound services provided to children and families. 

In March, I won a 2015 “Books for a Better Life” award for “The Price of Silence” and I participated with my son in a StoryFort reading hosted by the Cabin in Boise. 

2015 APA
annual meeting in Toronto.

In April, I spoke at the North Dakota Juvenile Justice conference and also visited with several parents whose children were struggling with mental illness. I also spoke at the Showers of Hope luncheon to support the Lindner Center of Hope in Cincinnati, Ohio. The Lindner family has a legacy of philanthropy in their community; they are now contributing their resources to help fund a truly revolutionary center of excellence for mental healthcare treatment and research. I also was the keynote speaker for the Idaho Children’s Home Society, an organization that provides counseling to low income children and families in our Boise community. 

With Dr. Jeffrey Lieberman, author
of "Shrinks" (must-read!)

May was a busy month. I spoke at the Siouxland Mental Health Center annual conference and learned more about partnerships with mental health courts that reduced recidivism rates for people suffering from mental illness by more than 75%. That’s a huge savings, both in taxpayer dollars and in lives. I also co-presented a workshop at the American Psychiatric Association annual meeting in Toronto. The workshop was the brainchild of Mental Health America’s thoughtful Patrick Hendry. Every advocate should read his paper on meaningful dialogue. Finally, I gave the keynote speech for Thresholds in Chicago, where I was brought to tears by the life-changing work their staff has done as they intervene with at-risk youth and give them a chance at a bright future.

September took me to Miami, Florida, to present at the 8th annual Chair Summit, where I met psychiatric care providers from all over the Americas, including Dr. Jeffrey Lieberman and Dr. Paul Summergrad, and learned about cutting-edge new research and treatments—and enjoyed an authentic Cubano and the best ceviche I’ve ever had. When I returned, I attended my first NAMI-Boise chapter board meeting. The National Alliance on Mental Illness is one of the nation’s most prominent advocacy groups and provides free education classes for the community.

The Oklahoma City Memorial

In October, I spoke at my first non “mental health” conference. Leadership Oklahoma decided to focus their annual meeting on mental illness and its impact on the Oklahoma community. Sadly, less than a week later, a young woman with mental illness crashed into a crowd of people, killing four people. Cathy Costello, whose untreated son stabbed her husband Mark, Oklahoma’s well-respected labor commissioner, was in the audience.   

In November, I was able to meet several of my mom advocate heroes in person at the Johns Hopkins annual Schizophrenia summit. The presenters, top researchers in their field, took time to meet with us as parents and answer our questions at an event organized by the inimitable Laura Pogliano, founder of Parents for Care.  Laura’s son Zac, who suffered with schizophrenia, died tragically at the age of 23 earlier this year. 

And now, on December 14, I’m in San Diego, preparing to attend the International Bipolar Foundation board meeting. Our board members include Randi Silverman, whose poignant film, No Letting Go, tells the hopeful story of a teenager struggling with mental illness and his family, and Kevin Hines, who survived a suicide attempt from the Golden Gate Bridge and is now sharing his powerful story to help others. 

Messages in Dutch Bros coffee lids.

Last year, on the second anniversary of Newtown, I wrote on the Huffington Post that we were “Two Years to Nowhere.”  Today, I have more hope. But real change depends on each of us. As a society, we have an obligation to provide treatment to those who suffer. As individuals, we have an ethical duty to treat one another with respect and compassion.

We still have a long way to go, but it feels like we’re finally moving in the right direction. 

My Son, My Mentor

Sometimes our children know more than we do

How well I remember The Gaze!

In the third week of September 16 years ago, I met my second son for the first time. A difficult pregnancy with preterm labor and several long, tedious weeks of bed rest concluded anticlimactically with an apparently healthy baby born on his due date, a relatively easy two-hour labor. He was loud about announcing his arrival into the world but quieted quickly when the doctor placed him in my arms.

Any mother and most fathers can tell you about The Gaze, that first moment when your newborn child fixes his or her eyes on you and makes him/herself the center of your world. Michael was a master of The Gaze. As I stared into his endless midnight-blue eyes, I was possessed by a sudden strange thought: “This soul is much older than I am.”

The moment stayed with me through my son’s agonizing marathon toddler tantrums that grew into inexplicable preschool rages, continuing right up until he was finally diagnosed with bipolar disorder at the age of 13.

I was and am his caregiver. But I have always felt an ancient wisdom when I’ve looked in his still-deep blue eyes, a sense of timelessness that transcends our relationship and his illness. Michael is an old soul.

And I’m not even really like that. I’m the science girl, not the New Age one. I read quantitative studies and consider outcomes and sample sizes and effects, not the ineffable but undeniable power of my child’s mind.

But now that he is celebrating his 16^th birthday, I think about everything he has had to overcome in his brief life: the night terrors, the paranoia, the overwhelming sensory swamp, the dysgraphia, the bullying from peers, the teachers and principals who have said, “He has so much potential. Why does he act this way?”

I think of his four stays in juvenile detention, his three hospitalizations. I think of the keen loss he experienced when he was separated from his siblings for several months. I think of the hole in his heart created when his father left him.

This second son of mine has fought so much harder for happiness than most of us ever have to.

September 2016, "Heroic Pose"

And the thing is, he’s winning. Despite the illness, despite the odds, Michael is winning. Maybe not every day, but slowly, bit by bit, his resilience, my son’s old soul, that ageless wisdom, that precocious sense of humor, keeps him from the abyss that rocks below every cradle, but especially below the cradles of our children who have mental illness.

I am his caregiver, his mother. But he has taught me lessons about humility and strength, about perseverance, and about forgiveness. His experiences with his own “different” brain have taught him to be so much more tolerant of others’ differences, and he has taught me by example.

Mental health is important to all of us. But people with mental illness have to work so much harder at it. My son is my hero. As I watch him claim the life he deserves, I remember that day when we first met, when he caught me in the power of The Gaze. This is a young man who will go far in life (again?). This is a young man who can teach me a few things. I look forward to learning them.

Singing to End Stigma

This week, forget the ice bucket challenge and think karaoke!

My son has bipolar disorder. Note: he is not bipolar. He has a serious mental illness, which he prefers to define as a "mental difference." But he wants the same things any kid his age wants: friends, a chance to score a goal on the soccer field, good grades, top rankings in Halo. With the right treatments and supports, he’s been given a chance to reach those goals.

“If people meet me first and get to know me, then they find out later about the bipolar, it’s no big deal,” he told me when I asked him how stigma affected him personally. “But when they hear bipolar first, they think, ‘Oh no! He’s a bad kid!’ And I have to work that much harder, if I get a chance at all.”

In a series of “mom chats” with my friend Janine Francolini of the Flawless Foundation, I asked mental health advocate Ross Szabo, who manages his bipolar disorder successfully, what he would tell my son about living with mental illness. You can watch his response here. Ross stressed the importance of self-compassion. I think he’s right: above all else, people who struggle with mental illness (or as my son likes to call it, mental “differences,”), have to develop a lot of compassion for themselves, because they often don’t get compassion from others. And as his mother, I can attest to the fact that parents don’t get much compassion either: when your child is in a psychiatric hospital, no one brings you a casserole.

One depressing fact: even though anti-stigma campaigns have made people more aware that mental illness is a brain disease, those campaigns have thus-far failed to budge the stigma meter long term. I think that both stigma and the resultant discrimination against people who have mental illness are the direct consequences of our society’s inhumane decision to replace mental institutions with another, worse kind of institution: prison. Treating people who have mental illness by sending them to prison, or even to “mental health court,” reinforces the idea that mental illness is a choice or a character flaw. We would never treat people who had a cancer diagnosis by sending them to jail.

A few months ago, the ALS ice bucket challenge was all over my Facebook feed. I was challenged, and I refused to participate. Not because I’m afraid of a little cold water (I will neither confirm nor deny that I have occasionally enjoyed a post-hike au naturel dip in some of Idaho’s lovely and bracing alpine lakes). Not because I don’t think that ALS is a serious disease that deserves our attention, or that I shouldn’t personally contribute to the cause.

My book The Price of Silence about parenting a
child with mental illness is available at
independent bookstores like Iconoclast Books.

I didn’t contribute because you never see things like ice bucket challenges for mental illness, to fund treatment before tragedy. But this week, my kids and I decided to participate in the Children’s Mental Health Network Karaoke Challenge, issued by Linette Murphy, a fellow mom and advocate. I am fortunate to call Scott Bryant-Comstock, CHM Network director, a friend, and I have been honored to participate in a series of dialogues about HR 3717 and how we can fix our broken mental healthcare system.

I’m also planning to use every social media channel I can this week to join my friends in fighting stigma. “When it comes to mental health, silence is not golden.” This is the theme of a story-sharing, stigma-busting campaign led by the International Bipolar Foundation and other groups to fight the stigma that affects people who have mental illness. Starting Monday, October 6, use the hashtags #BustTheStigma and #SayItForward to share your stories of living with mental illness and working toward mental health. 

Because the Price of Silence is still far too high for children, families, and communities.