The Price of Silence: A Mom's Perspective on Mental Illness

by Liza Long, Liza Long

Liza Long is the mother of a child with an undiagnosed mental disorder. When she heard about the shooting at Sandy Hook Elementary School in Newtown, Connecticut, her first thought was, What if my son does that someday? She wrote an emotional response to the tragedy, which the Boise State University online journal posted as I Am Adam Lanza s Mother. The post went viral, receiving 1.2 million Facebook likes, nearly 17,000 tweets, and 30,000 emails.

Now, in "The Price of Silence "she takes a devastating look at how we address mental illness, especially in children, who are funneled through a system of education, mental health care, and juvenile detention that leads far too often to prison. In the end she asks one central question: if there s a poster child for cancer, why can t there be one for mental illness? The answer: the stigma. Liza Long is speaking in a way that we cannot help but hear, and she won t stop until something changes."

Genres: Nonfiction, Mental Health, Memoir, Psychology, Mental Illness, Parenting, Health

304 pages, Hardcover

First published August 28, 2014

Reviews

[Jennifer · Rating 4 out of 5]

I am aware that there may be some controversy around this book. Part of the issue is that nobody who deals with mental illness has the same experience, part of the issue is the stigma and political conflict around care of those with mental illness. However, I found it fascinating. I am particularly interested in the state of mental health services available to children and adolescents, and that is mainly what this book is about. It is primarily an advocacy book, but she uses her personal experience and the experiences of others to illustrate the main problems faced by families that cope daily with mental illness. The main and most important points as I see them:

1. The social stigma attached to mental illness and an obsession with what Long calls "toxic perfectionism" prevent an open discussion of issues, needs and solutions. Discussion of this sensitive topic can lead to social ostracism and painful criticism of already burdened families.
2. Most medical insurance does not really cover mental illness, even if it says it does. And the costs of care for a child with a mental illness are prohibitive.
3. Diagnosis is very difficult to obtain, misdiagnosis is common. Which leads to experimental application of medication with uncertain outcomes. This also goes back to the issue of medical insurance not covering the costs of obtaining a reliable diagnosis.
4. Once a diagnosis is made, treatment can be difficult to obtain. Not only will cost be an issue, but equally problematic is the lack of qualified therapists. Long states that the projected number of therapists needed to serve the population of mentally ill children in the US by the year 2000 was 20,000. The actual number of qualified providers in the year 2012 was 8,300. This is to serve 1 out of every 5 children in the US population.
5. Schools are not equipped to deal with students who have mental health issues and often refer difficult students to the penal system. Thus, the way to get help for a child with a mental illness is to get them arrested and into the judicial system, where a diagnosis and therapy program can be mandated and subsidized. This can also lead to removal of the child with the mental illness from their home, or possible removal of the other children in the family due to concerns for their safety. This becomes a terrible catch-22 for parents.
6. While trying to remain employed (insurance) and care for the other children in the family, parents also must become experts in family law, educational law, medical insurance and prescription medication. They must become experts in whatever their child is diagnosed with so that they can find the best treatment options available and know if their child is on the right medications. They must be able to evaluate whether medications are helping or hurting, when the child is escalating and whether it will be possible to de-escalate or if they are going to make a trip to the hospital or a residential treatment facility (even though it is unlikely a bed will be available). They must have a safety plan in place for the other children in the family.

It's a very sobering review of the chronic lack of resources for families struggling to find care for a child with mental illness. Long states several times that before we can find a solution to the problem, we have to be willing to talk about it. I agree, but it's not really that simple. For parents to share their stories, some level of violation of the mentally ill child's privacy occurs. Due to the social stigma surrounding mental illness and the inability to control the response of others, particularly those who do not understand mental illness, this should not be a step lightly taken.

This book is worth a read. For those who have a child who struggles with mental illness, it may confirm what you already know or remind you you're not alone. For those who don't have personal experience with this difficult struggle, perhaps it will give you some insight and greater compassion.

[Laura · Rating 5 out of 5]

If you want to know why you should never ever judge a parent of a child with mental health issues, you should read this book. This book details what it's like for us parents as we try to HELP our kids. Even being incredibly privileged and able to afford any care we need to get help, it has been a long tough road filled with worry, fear, sadness, and concern for the future.

She lays it all out in this book. The lack of mental health professionals for children. The expense. The long wait times for diagnosis. Long treatment times. Medication that doesn't work. Poor outcomes despite getting help. The shame of being the parent of the bad kid. THE STIGMA. And then on top of it all, judgement from other parents.

I've lost countless hours of sleep over the years, worried about my sons' mental health. If you want to know why, this is your book. Our situation is not as extreme as her son's but we have faced many of the challenges she describes. We continue on, hoping all the work we do now will lead to mentally healthy adults.

[Ellen · Rating 5 out of 5]

A brave, disturbing account one American family dealing with mental illness on a daily basis written by Liza Long, the author of the Internet essay, "I am Adam Lanza's Mother." This book is thoroughly researched and accompanied by a long bibliography and footnotes, and one fact that sticks in my mind is this "One in five children suffers from a diagnosable and debilitating mental illness." That is a huge number! Here is another memorable line: "We treat mental illness differently from the way we treat physical illness." She is referring to the fear and stigma that we often experience when dealing with mental illness, and the fact that often the only way that seriously mentally ill individuals get help is by going through the criminal justice system. There are no easy solutions to these problems, but Liza is hopeful that sharing her family's story will make a difference.

[Jeanette · Rating 3 out of 5]

This is a difficult book to read. Emotionally and logically. It's written with some number of redundancies, but regardless it does have a message. To me, that message was that it is nearly impossible to parent a mentally ill child or teen ager well. And it also takes big bucks. Not saying that having the big bucks to spend will enable you to find adequate assistance.

Having some association with both psychology paths for help and with youth populations, I find that her "eyes" as a parent have also become somewhat clouded from the closeness and exhaustion. Especially upon the consequence to her other 3 children from the behaviors they endure by the actions of their mentally ill brother. Not the least is the mind numbing fear that they continually dwell within.

Is there a good answer WITH million buck care at all? How can the stigma be completely obscured when such emotional or physical damage continues for others? Talking about the stigma doesn't take away the harm or the fear of future hurt.

This book was excellent in projecting the experience the author has had. But I do wonder at some of her answers or partial solutions. One in five including all developmental or learning disability conditions also, to me, that it is just not an estimation that equates to conditions as her son lives. There are some answers or maybe other ways to learn or school that could be home developed for ADD or ADHD or some perception or emotion based non-sociably apt pupils. But what does she truly want? It used to be institutional neglect of different scales instead of juvie or police related consequences. Would a return to that form be better? Does she want the potential Adam Lanza's locked up permanently? Probably not her own son, but I wonder who will be the judge ultimately. DSM-V is just an interpretation and authority is walking a fine line right now. Civil rights to social responsibility?

This is always sad, and these "eyes" extremely sad.

[Jen · Rating 5 out of 5]

This book is SO IMPORTANT. Mental health issues are kept hidden and not talked about for fear of the stigma that are attached to them. That needs to stop. Those who need help and support aren't getting it and that only makes the situation that much worse. If one can be open about having cancer and being supported and treated through it, how is a health issue with the brain any different? It's not like people with mental health issues WANT to act the way they do. It's not a choice, which makes it difficult for those with certain issues to even realize they have a problem, which is where the scary-factor for those without those issues comes in I think. The fear of the unknown makes it easy to accuse and hate, which drives those who realize they need help or their loved ones further into the shadows.

I will be giving copies of this book to family and friends, to anyone who will read it. It is that important. The store will be stocking this title, definitely.

It's not easy reading. It is dense and will take time and a lot of thinking to get through it if you have not experienced what the author has experienced. If you have, I imagine this book will be powerful for you and possibly helpful about resources you may not have known about.

I cannot recommend this book enough to everyone. It needs to be required reading, for everyone.

5, we need to talk about mental health and stop the stigma, stars.

My thanks to NetGalley and PENGUIN GROUP Hudson Street Press for an eARC copy of this book to read and review.

[Heather · Rating 3 out of 5]

I wanted to read this book because I, like most people in the country, am saddened and shocked by the school shootings that have happened over the last fifteen or so years, and my background in psychology has me absolutely convinced that mental illness is the culprit for most (if not all) of these horrific acts. I am not a mother, but I cannot imagine what it might be like to be a parent of a child that chooses a crime like this, and I was interested to hear from the point of view of a mother who believes – as Long does – that her child is capable of something like this, if not under proper medical care.

It’s clear from the very beginning of Long’s book that she is one hundred percent devoted to her children and would do absolutely anything to ensure that they get the love, attention, and proper medical care they need and deserve. In addition to her son who has mental illness (she calls him Michael in this book, though that’s not his real name), she has a son older than him and a younger daughter and son. In addition to being a full-time working mother, she is also divorced from the childrens’ father. To say that her life is overwhelming is an understatement. When she describes dealing with Michael’s terrifying rages and tantrums, threats and physical altercations, it’s almost too much to comprehend.

What was most enlightening to me about The Price of Silence, and I think a lot of readers will agree, is just how backwards and unhelpful the mental health system in the United States truly is. Long describes a world in which it’s better for a mentally ill child to go to jail than be subject to whatever psychological help her insurance will pay for (usually none). She describes a life in which she takes her son to doctor after doctor and is told time and time again that he’s just being a boy and that hitting, screaming, and terrorizing his younger sister are normal behaviors for a child his age. She describes a world in which being white and middle class puts you at a distinct advantage in the mental health care your family can receive, but even that care is paltry at best – so what about the rest of America, the ones who don’t fall into that space of privilege?

I think that Long is incredibly brave for writing this book and I definitely think it’s a necessary contribution to the body of work on this topic. Since I applaud her so sincerely for her courage in writing about her family and her son so candidly, I don’t want to say much that’s negative about the book but I also have to be honest. I found some of the book to be redundant and it seemed like (at times) she kept repeating the same message over and over again. I also wasn’t wowed by the style of writing – I kept reading it because the information itself was fascinating, not because I was particularly compelled by the way that information was presented.

That being said, however, I do recommend The Price of Silence to everyone. It’s important to at least hear the voice of someone else before you begin judging them. I know parents with unruly children are judged instantly – maybe people should stop and think that perhaps that child has something deeper going on than just bad parenting. If nothing else, this book reminded me that you never know what someone is going through until you hear it from them, until you walk in their shoes. And of course, having an untreated mental illness is in no way an excuse for committing unimaginable crimes, but it is important to understand that there’s usually more to those criminals than simply being horrible people. They are usually suffering immensely before making the devastating choice to retaliate with violence. Anyway, The Price of Silence is good! It’s a very important book and I think you should read it.

[Kathryn · Rating 5 out of 5]

This book was fantastic. Well written and chock full of great information wrapped around a story with which I could relate. Highly recommend.

[Tamar · Rating 5 out of 5]

The Price of Silence is an important book that everyone needs to read. Long writes that she wrote this book with two audiences in mind: those involved with the care of mentally ill individuals and those who have no idea of what it is like to live with such individuals. I think she succeeds in making this book an attractive read to both groups. I myself fall into the second group. I like to think of myself as an open, caring and patient individual, but as I read the book I realized that I have absolutely no conception of how open, caring and patient a person must be to deal with a mentally ill individual. I respect Long so much for caring for her son, an incredibly difficult child, and I am so happy for her that her efforts seem to have paid off in the end. But Long is a white, middle class educated woman, and if she had such a hard time caring for her child, how much more so do others? The school and prison systems in the US are broken, and the first step in fixing them is to remove the stigma from mental illness the same way the stigma around cancer was removed in the past few decades. This book does an excellent job detailing the problems in the systems and current treatment and diagnosis models, and suggests ways to correct them, along with compelling stories of mentally ill individuals and their families. Mental illness is not just a problem for those with ill family members; mental illness is a societal issue that affects everyone, whether it be personal and detrimental contact with a mentally ill individual such as Adam Lanza, or just the fact that the prison system drains our tax dollars caring for these individuals when the money could be put to far better and more efficient use keeping them out of prison in the first place. PLEASE READ THIS BOOK!

Disclosure: I received this book through LibraryThing's Early Reviewer Program.

[Larissa · Rating 4 out of 5]

I admit I know Liza personally, well before her internet fame and before she became a mother.

It does not change the fact that this book should be read by any adult who has an interest in mental health and policy making for it. In highlighting the personal struggles she has had caring for a child with mental health problems, she also sheds lights on a growing problem of how children with illnesses are divided by the disease location above or below the neck.

Her struggles are very real. I wanted answers, which of course Liza doesn't have. However, that doesn't lessen the value of her book, showing that the problem of mental health needs to be tackled, for the safety of children everywhere.

[Devera Chandler · Rating 5 out of 5]

5 Stars - but deserves more! This is ONE AMAZING BOOK!!!!!!!

Everyone parent and anyone who knows someone who has a child on the autism spectrum should read this book.

I felt as though (for the first time ever) someone had read my thoughts, felt my heartache, and been through the emotional battle that is the warfare of parenthood of a child with autism. I can't tell you how many times I read something that Liza wrote that I stopped and reread it to my husband. All he could keep saying is, "Wow. She gets it."

'Nuff said. READ THE BOOK - it's worth every second.

[Sue · Rating 4 out of 5]

The Price of Silence is an excellent introduction to the world of mental illness through the experiences of our most treasured, our children. In America we take pride in our beliefs that our children receive our best, the honest story told here provides a different view. This book tells a story of mothers' love and the complex and often contradictory world of illnesses obfuscated by stigma, political posturing at all levels, and a general breakdown of care. Correlated data offers statistical accounts of the intersection of childhood mental illness, poverty, and prison. The author's revelations describe a difficult, multi-faceted problem. The structure of the writing reinforces key points while building logical connections and observances. Liza Long, the author, bravely steps forward and weaves a relevant portrayal of her family's struggles with a beloved son's mental illness. Siblings, parents, friends, neighbors, and communities all are affected. Their story explains the realities, the numbers demonstrate the breadth of the problem --- one in five children face mental illness in our country.

[Skyler · Rating 3 out of 5]

Be prepared to become very familiar throughout the course of this memoir with the oft thrown in phrase "school-to-prison pipeline."

This book is a more thorough elaboration on an article written by Liza Long and ultimately, I found that the entire book can quite easily be summed up by the concluding paragraph:

"But as I looked at trends— the school-to-prison pipeline, the association of mental illness with poverty, the stresses of single parenthood— I realized that we have the opportunity to create real and lasting change in our society, with relatively little expense, by reallocating resources and providing early and effective interventions at home, in schools, and in treatment. As parents like me speak out and share our stories, parents of children with mental illness can and will find the help they need for their children. We are not alone. Our pictures may not be perfect, but our families—and our children—can be happy, whole, and well."

[Marcy · Rating 4 out of 5]

This book is about raising awareness, particularly awareness about how hard it is to raise children who have mental illnesses. Resources are hard to find and are often not covered by insurance. Stigma influences how the kids and their parents are treated. And the fallout from untreated mental illness affects us all in one way or another. Although Long focuses on mental illnesses such as juvenile bipolar, she also mentions autism and ADHD, and I think her main thesis applies to all types of mental illness. As a parent of children with anxiety, ADHD, and other acronyms, I understand and am living with the challenges. The book provided some resources for me to look into though, and it definitely inspired me to be more of an advocate for awareness and compassion.

[Aurelia · Rating 5 out of 5]

Lately, I've become more aware of how necessary it is for me to learn the facts of other people's situations and perspectives before I can ever even form an opinion or personal conclusion. I make it my responsibility. This is one of the most profound books that I have ever read, which has gifted me with a better awareness and view point of someone who is actually fighting this given fate. I had absolutely no idea how poorly our country addresses the needs of children and families dealing with mental illness, and how MUCH families need to fight for rights. A jaw-dropper of a read that hopefully will awaken some minds that are not living with these serious challenges themselves.

[Niqui Stanforth · Rating 4 out of 5]

This book is powerful. If you have no idea what it is like to have a family member that struggles with their mental health, this will give you some valuable insight. Liza Long is pretty spot on with her anecdotal history.
I experienced similar obstacles and trials in a similar situation in the USA in the 90s and 00s. It is sad (but not surprising) to discover that 20 years on, little has changed.
At least there is more dialogue about mental health challenges and the lack of available treatment leading to enormous pressures on the criminal justice system. But there is still a long long way to go.

[Julia Busby · Rating 4 out of 5]

As an educator I work closely with parents who struggle with their children's disability ,but also our educational and health system. It was a great read coming from a parent who accidentally became an advocate for her child. She has brought mental illness and the lack of services into the light. Would recommend.

[Rich · Rating 4 out of 5]

The subject matter is complex, thought-provoking and heart-breaking. To call Liza Long "brave" at this point would seem like something of a cliche.

The structure of the books feels somewhat repetitive (in that Long has a habit of restating something she has addressed earlier with no new ideas or commentary).

[Alexis Dosal · Rating 5 out of 5]

While I don’t agree with everything in this book, I DO agree that there is a sore lacking of attention paid to our mental health care system and the treatment of children. This book shares a peek into what parents go through when trying to get their children some form of help. Definitely worth a read!

[Misty · Rating 4 out of 5]

An invaluable insight into chaotic life with a mentally/emotionally challenged child. She does a great job taking you through the frustrating journey of trying to find answers, trying to be your child’s advocate, and trying to hold your life together while being a parent. I gained a deeper appreciation for how complicated parenting a child whose emotional psyche falls among the the tails of the bell curve.

[Kristi Groseclose · Rating 5 out of 5]

This book is very heart breaking. This book is unreal. This book is infuriating (not at the author, but the lack of help the USA gives). Everyone needs to read this. Police officers, teachers, parents, children old enough to understand the subjects at hand. I'm so sorry people go through this and there is little help for it.

[Lora · Rating 4 out of 5]

While I didn’t love/agree with every single assertion of this book (her complete downplaying of the role of parental nurturing in a child’s life comes to mind) I still thought it was powerful and eye-opening. A great book for sparking important conversations, and a lot of unsettling (but necessary) food for thought. It will make me think of people and situations differently than I did before.

[Tracy Conner · Rating 5 out of 5]

This is a must read for all parents! 1 in 5 children in America have a mental illness. This books talks about what that looks like day to day, barriers to overcome, stigma associated with mental health issues, and so much more! Very informative and eye opening!

[Jennifer Bowers · Rating 4 out of 5]

Troubling. Our country's handling of mental illness in children is a mess.

[Diane S. Kaczmarek · Rating 5 out of 5]

Tells it like it is

If you don't have a child like this, you don't know what it is like to raise one, until you read this book.

[Lindsay · Rating 2 out of 5]

This book was written by the mom of a violent mentally ill son. It was a lot of info-- more research statistics than memoir.

[Michele Pfrogner · Rating 3 out of 5]

Liza Long is NOT "Adam Lanza's Mother." If Nancy Lanza had lived, I wonder if Long would have been sued for using the metaphor when her blog post was published; however, the presumptuous title, suggested by a friend, certainly got attention. If that was not the original intent, this book certainly reflects the attention she has since received, including career aggrandizement and her "authority."
As a retired, 35 year teaching veteran, I do agree with the author that schools are not adequately servicing children with mental health needs, and that juvenile detention and prison are not the answer. Parents, like Long and Lanza's mother, definitely deserve(d) more community/state/federal help in finding answers and providing assistance.
All students in schools deserve to have educational settings that are safe, including those who have "twenty-step behavior intervention plans" (148). And so do teachers; I, too, would have filed charges against a student if he assaulted me with a phone (148).
Teach for America is not the answer. One summer of "intense training" does not adequately prepare anyone for the classroom. Nicole Brisbane (143), whom the author interviewed, taught just two years for the program--the minimum amount of required time to have her college expenses paid. And, according to another source, Brisbane has refused to provide validation for supposed acclaims made during those two years.
Michael Schofield (195), author of January First, and his family have come under scrutiny due to possible inaccuracies with his daughter's actual "illness."
The author's commentary on guns (199), particularly since Adam Lanza's mother is not alive to defend herself, is judgmental.
Of course, the author, by writing this book, is opening herself to judgment as well. Her family's story is indeed important, but her method of sharing it left me questioning whether this was really about helping children with mental illness, or gaining attention for herself.

[Karen Mayes · Rating 4 out of 5]

The book mostly addresses Utah's approach to the resources for children and youths' mental health. Most, if not all, states in America have the similar resources as well. The big concern is how the society handles people with MI... the corrections system is overflowing with the prisoners with MIs. In fact, I read that at least 80% of juvenile youths have mental illnesses.

The reason for the sudden rise in the incarnation for the juveniles is the restricting or/and closings of inpatient psychiatric centers, especially with the health insurances which have largely become restricted toward the treatment of MIs. I know, I still pay the hospital bills that my daughter's health insurance refused to cover.

Also, the handling of crisis could be better... the first responders are normally the police officers and unfortunately, the police officers could be better sensitive and more equipped to deal with the youths out of control. Even they still offer to parents two choices... hospital OR juvie? Why does it have to be juvie if they already know about the youth's mental illness? *smh*

Lastly, the stigma is still strong, despite the efforts to make MI less of a taboo. Schools are still not equipped to deal with them... but IDEA law still wants to see full inclusion of all youths with all kinds of disabilities, which is good in some ways, but not good in other ways. It depends on what resources the school districts are willing to pay for.

It's a good book... good for parents of children/youths with mental illnesses, so that they could have a better idea of where they stand in the eyes of the society and that they have power to educate the society.

[Stephanee · Rating 4 out of 5]

Liza Long offers a first-person view of what it's like to have a mentally ill child, to have a child that you love but don't necessarily like, to fear for your safety and the safety of others because your sweet angel also happens to have violent outbursts. Long discusses the issues parents face when struggling to obtain mental health care for their sick child and how those issues tend to grow as you dip below the poverty line. She discusses the shame that accompanies not being able to help your child and how that shame can often lead to self-blame.

This book was written fairly well (though the writing was a bit disorganized and repetitive at times) and the author seems well-researched on the subject of children's mental health care. There are many notes in the back of the book, although I think connecting footnotes in the text would have been helpful. Even so, this book led me to many other books that I might never have found. This is a must read for anyone interested in mental illness in children.

As the author puts it, "I'm writing this book for two very different audiences. The first audience knows mental illness and lives with it every day...But I am also writing for a second audience, an audience that is surprised to learn that one in five children in the United States will suffer from a serious and debilitating mental disorders, an audience that believes mental illness is something we shouldn't talk about except behind closed doors in private rooms, an audience that is convinced that the sometimes maladaptive behaviors of mental illness are a 'choice.'"

[Cindie · Rating 5 out of 5]

Everyone should read this book: parents of mentally ill children, as well as parents of neuro-typical children and non parents. Mental illness and the lack of access to care, social stigma, failing families and the anonymity granted by social media to bully are all part of the perfect storm that will affect and that has already affected all of us. I thought this book was going to be one mom's sad story; instead, it is one woman's exhaustive exploration of the state of mental illness healthcare, and the sad lack of same, as well as literary, historical and pop cultured references to the confusing, hypocritical but potentially beautiful world we all inhabit. I usually avoid any books about unwell children, but I heard Liza Long on NPR not too long ago. Someone who lived in Newtown called in and lashed out her pain on Liza. Liza responded with kindness, respect and understanding while gently educating the caller and the listeners. I so admire Liza for her unrelenting pursuit of help for her son, but also her willingness to reveal it to the world. I can only imagine what it took out of her to write it -- it took a lot out of me to even read it, but I am so glad I did.

[Danny · Rating 3 out of 5]

I won this book as part of Goodreads Giveaway; I'm glad I did. Though the book has a "first book of an author" feel to it (as it is), the book provides great insight into the physical, emotional, and spiritual toll that parents with children with mental illnesses endure on a daily basis. It has helped me to try and be more cognizant of those people and families that I know (and will encounter in the future) who must face mental illness challenges. I hope to be more mindful to lend help where I can and to refrain from judgment or criticism. The author has also helped me to better understand how and why the current system of mental illness healthcare is a big stumbling block to children with mental illness's opportunities to receive effective and adequate help/treatment that can help foster their hopes of enjoying a successful and fulfilling life. I would recommend this book for those seeking ideas of treatment, rays of hope, or possible ways to get involved in mental health advocacy.