I consider myself fortunate to call Liza Long a friend.
But to be fair, I think anyone who spends more than five minutes with her immediately considers her a friend. She has the kind of warmth and acceptance that draws you in.
I met Liza last fall when she came to San Antonio to participate in TEDxSanAntonio as well as a special talk the following day hosted by Clarity Child Guidance Center and facilitated by Robert Rivard.
When I met her at the dress rehearsal for our TEDx event, I was quite the irritating fan girl. I was working in community mental health, an administrator in the children’s division. Her essay “I am Adam Lanza’s Mother," had become our battle cry.
But more importantly – and what I told her when I introduced myself to her – was “I am also Adam Lanza’s mother. I am here doing this event, which is such a professional accomplishment – but my daughter is so sick she can’t safely live in my home.”
Liza hugged me and said, “We are all doing the very best that we can. This includes you.”
That has been my battle cry – or on tougher days, my tiny whimper – every day since.
She also has an excellent sense of humor, and tolerates me sending her random, inappropriate texts on a regular basis. In short, she is exactly who she says she is – just a mom from Idaho.
I realize I just spent the first part of what purports to be a book review about "The Price of Silence" talking about myself. But Liza inspires that kind of relationship with people. Reading the book feels like the kind of conversation where you get lots of information without blame or shame. In a world where the mental health issues of our children are almost universally blamed on the parents, Liza is the little mom from Idaho with the guts to say we need to stop pointing fingers and start looking for solutions. Because we parents are often doing the best we can.
Justin Robinson is the young man who murdered Autumn Pasquale in October of 2012. He is serving a 17-year sentence for his crime. His mother, Anita Saunders, noticed an odd posting on his Facebook page and was the one who turned him in. I can’t even begin to imagine her pain.
However, Anthony Pasquale, the father of Autumn, has filed a lawsuit against both Anita Saunders and Alonzo Robinson, Justin’s parents.
"If you're going to raise a murderer, you're going to take responsibility for it,"Anthony Pasquale's attorney Kathleen Bonczyk told the New York Daily News.
I also can’t even begin to imagine Pasquale’s pain, and he wants an answer. But I don’t think this lawsuit will help him find it. His response to the loss of his daughter is my second greatest fear as the parent of a mentally ill child. The first is that my daughter will hurt someone; the second is that I will be held accountable despite all I have done to protect her and those around her. Anita Saunders is living my nightmare. This is the exact fear that Liza put voice to in her essay “I Am Adam Lanza’s mother.”
She was finishing her book and going through the lengthy process of having it published last year when I met her, and I have been anxiously awaiting it ever since. But when it came in the mail, I become anxious and I set it aside. I expected it to upset me, to trigger all the anxieties that I keep working through in therapy. I expected I would have to read it in small chunks with breathing space in between.
Instead I read it in one burst, because it felt just like Liza. I sat down and made a cup of tea, and had a conversation with one of the people I admire the most. She just didn’t happen to be in the room at the time.
For all the books on the market about mental illness in general, and children’s mental health in particular, no one has written this book. No one has spoken so honestly about their experience, and looked so closely at so many of the things that are wrong with the mental health care system in the process.
She talks about many of the alternative treatments available out there, and the choices she has made regarding them without judgment of individuals who have tried other treatments.
For example, she interviews Aspen Morrow on her use of the Campbell-McBride GAPS (Gut and Psychological Syndrome) diet which is an elimination diet which can help children and adults (particularly those who are medication resistant or struggle with medication side-effects) better manage their symptoms.
Liza admits that the diet has failed for her son. I also tried the diet with my daughter years ago, even baking our sandwich bread from scratch. It didn’t work for us any more than it did Michael, but it successfully irritated my children who longed for a treat now and then (Liza mentions Michael’s love of the occasional root beer…mine would throw down if ice cream became a non-option). But for some people, these alternatives offer great hope, and I appreciate that she explores them all. It did for Aspen Morrow, as Liza’s book discusses.
Liza looks at programs and treatment centers that are doing amazing things, including San Antonio’s own Clarity Child Guidance Center, which offers both inpatient and outpatient treatment to children and their families. The campus, which looks more like a park, is a place that many children are eager to visit. The ClarityCare model presumes that all children do well when they can, so at all levels of care, the staff collaborate with families to facilitate empowerment and success.
And finally, Liza discusses many of the issues that the families with children with a mental health diagnosis face every day. These facts are a slap-in-the-face reality for those of us who have lived experience, but are not information that others are aware of.
On Public Education:
All children have the right to a free and appropriate public education, or FAPE, an acronym that parents of children with any disability know well. That right is delineated in several federal laws designated to protect individuals with disabilities, including Section 504 of the Rehabilitation Act of 1973, Title III of the Americans with Disabilities Act, and the Individuals with Disabilities Act of 2004, or IDEA. But enforcing that right can become a full-time job for parents with mental illness, too often resulting in an adversarial rather than a collaborative relationship among parents, teachers, and administrators.
Liza’s son Michael, at the time of her writing this book, was in a special school for individuals with mental health diagnoses. She discusses the problems he had in school, starting as far back as pre-K, an immensely relatable experience.
I had wonderful support in some of my daughter’s schools and terrible experiences in others. Despite being Dr. Harper, a title that automatically afforded me more respect than other parents, despite knowing the laws and making sure that the school staff I spoke to also did, and despite getting significant assistance from the Texas Federation of Families for Children’s Mental Health, my daughter did not make it through high school. After two hospitalizations her freshman year and another semester of home-schooling, she is now in GED classes at her job training program. The system failed her, and continues to fail countless others.
On the Criminal Justice System:
The United States sends more of its children to jail each year than any other developed country in the world: 130,000, with an average of 70,000 on any given day. Of these children, as many as 75% have at least one mental disorder. The lifetime consequences for children who enter the juvenile justice system are grim: they are much less likely to complete high school and much more likely to go to prison as adults.
But the U.S. prison industry is booming, spending more than $6 million on juvenile corrections each year. In my state (and many states), the only way parents can access much-needed mental health services is through the criminal justice system, a system where as many as 67% of boys and 75% of girls in juvenile detention have a mental disorder, and over half of all youth also have substance abuse problems. For youth who have been in residential detention for nine months or more, those rates are even higher: 88% of boys and 92% of girls in the California juvenile detention system had at least one psychiatric disorder, even after conduct disorder and oppositional defiant disorder were excluded. The prevalence of mental illness continues with the adult prison population. Riker’s Island, the Los Angeles County Jail, and Cook County Jail in Illinois housed the nation's largest mental health treatment centers in 2011.
Liza admits having been through this process with Michael, more than once. She discusses the many difficult things she has gone through in her life. But then admits "…I have never done anything harder than call the police on my own child.” Michael had more than one juvenile detention visit, and suffered night terrors for over a year after.
I have also had multiple experiences with the SAPD and the local court system because of my daughter. Some have been awful, such as the judge screaming at me that clearly we needed therapy (trust me, we were getting it, the both of us). And some were great. Many of the officers who work in my neighborhood got to know my daughter quite well, and were supportive of me and protective of her. Watching your kid spend hours in the ER in handcuffs is tough. Distracting me by talking about recipes, was exceptionally kind. Officer Burrows still owes me his sugar-free lemon cake recipe, I do believe.
The number of families who have had to go on SSI and Medicaid, or give custody of their children to the state to ensure they receive adequate care is outstanding. Those of us in the solid middle class have maybe taken the hardest hit, as Liza explains within her final chapter. She talks of the time she spent half a month’s salary for Michael to see a specialist (a trip well worth it, it appears), as well as other expenses that did not pay off as well.
The important thing, as Liza reminds us, is that one in five children in the United States suffers from mental illness, which is 80,000 children in Bexar County alone. But of those 80,000, it is statistically likely that only 16,000 will receive treatment. The Clarity Child Guidance sponsored One in Five minds campaign, based here in Bexar County, has been working to break down stigma and raise awareness.
Near the end of the final chapter, we are reminded:
Every family of a child with mental illness has experienced some kind of stigma, some kind of intentional cruelty. And yet families – and family therapy – may hold the key to successfully managing mental illness. Before we can provide effective supports to families of children with mental illness, we have to be able to talk about the problem. We have to end stigma. In the essay that started this journey I wrote, “It’s time to talk about mental illness.” I hope that in hindsight, we view 2013 as a tipping point year, as the time when people stopped seeing mental illness as different from physical illness – when people could finally share their stories.
My fiancé asked me if I wanted to share so much of my story here. Yes. Was it easy? Not at all. Nor was it for Liza, who spent a year fighting for custody of her two younger children because of Michael’s struggles. I share her struggle, so any review of her book that didn’t speak to that experience would have been a dishonest one.
Liza shares her story, and I share mine, because there is no shame in them.
As Liza asks, "Where are the casseroles?" When my late husband fought cancer, people did bring food, offer to clean my house, help with my children. When my daughter rages, all but my very dearest friends disappear. And that is when we need support the most.
But whether we are treatment professionals, family members that are struggling, or just fellow members of the larger Bexar County community, we need to remember Liza’s closing words:
We know what works. We even know how to pay for it. But until we can talk about mental illness – until we can overcome stigma and fear – we will continue the destructive and painful cycle of prison, substance abuse, and unpredictable (but all too predictable violence), as families and children suffer in shame and silence.
When we share our stories, when we listen to each other’s experiences, we start to change our communities. Liza’s bravery in writing this book opens a new dialogue that I hope we continue to have here in Bexar County.
*Featured/top image: Liza Long's four children, together on a fall day in Idaho. Courtesy photo.