Navigating the medical system can be confusing and frustrating. We get advice from experts on how to become a smarter health care advocate for yourself and your loved ones.
Guest Host: Tom Gjelten
When Liza Long heard about the shooting at Sandy Hook Elementary School two years ago, her first thought was: What if my son does that someday? Her 13-year-old son had just been hospitalized in a mental facility for violent behavior. Two days after Adam Lanza killed his mother, 20 children, six teachers, and then himself, Long posted an emotional response on her blog titled: “I am Adam Lanza’s mother.” Her article went viral. Her essay became a rallying cry for better access to treatment for mentally-ill children. Guest host Tom Gjelten talks with Liza Long about her new book on raising a son with a mental illness.
- Liza Long author and mental health advocate
Read A Featured Excerpt
Reprinted by arrangement with Hudson Street Press, a member of Penguin Random House (USA) Inc., from The Price of Silence by Liza Long. Copyright © 2014 by Liza Long.
MR. TOM GJELTENThanks for joining us. I'm Tom Gjelten from NPR. I'm sitting in today for Diane Rehm. She's getting a voice treatment and she'll be back later this month. Two days after the horrible shooting at Sandy Hook Elementary School two years ago, Liza Long wrote an op-ed titled, "I Am Adam Lanza's Mother." It was an emotional essay about what it's like to raise a mentally ill, sometimes violent teenage son.
MR. TOM GJELTENHer blog posts quickly went viral with more than 1 million likes on Facebook. She's out now with a book, "The Price of Silence: A Mom's Perspective On Mental Illness." Author Liza Long joins me here in the studio. Thanks so much for sharing your story with us, Liza.
MS. LIZA LONGTom, thank you so much for having me on the program.
GJELTENI've no doubt that Liza's story will resonate with many of you and we want to bring as many of you as we can into this conversation, especially those of you who have similar experiences to share or concerns to share. We'll take your phone calls. The number is 1-800-433-8850. We'll be reading your emails. You can send them to firstname.lastname@example.org. Of course, you can reach us as well on Facebook or Twitter.
GJELTENSo Liza, take us back to that day that you wrote about two years ago, the day of the Sandy Hook shooting.
LONGIt's one of those moments that I will never forget. Two days before the Sandy Hook shooting, my son, who was then 13, had had a violent, explosive rage and I'd had to put him in an acute care, psychiatric treatment facility. That day, when I got into work, I...
GJELTENCan you describe what that rage was just so we get an idea of what you're dealing with here?
LONGYeah, it's honestly kind of hard for people to understand who haven't seen it. People will say, oh, a temper tantrum or, you know, why can't you control that. It almost looks like your child becomes another person. His pupils would get very large and just zero to 60 in almost no time and explosive rage. And by the way, he's a very sweet kid. He's normally just very bright and funny and great to be around, but it's so unpredictable, these rages.
LONGYou don't know what might set it off. I think that morning, it was an argument about the color of his pants. And so I had just put him in the hospital. He'd been in the hospital for two days. I had bruises all over my arms, bite marks from trying to contain him so he wouldn't run into traffic. And when I saw the news on Sandy Hook, I was at work. And I closed the door to my office, put my head on my desk and just started to cry.
LONGAnd later that night, I sat down and I wrote my truth and in many ways, that piece that spoke to so many people around the world was really written to me and it was my acknowledgement to myself that I had been struggling for years to try to help my child and I didn't know what to do. I had no solutions or my own son. And meanwhile, people around the world were suffering. Children were dead.
LONGAnd to me, the problem was very clear. It was about mental illness and about our failure to provide supports for children and families in this country.
GJELTENYou were writing it for yourself. You weren't necessarily making a plea for some kind of government action or assistance or whatever. You just wanted to get it off your chest.
LONGDefinitely. I blogged anonymously, like a lot of people who blog about mental illness. I blogged under the name the Anarchist Soccer Mom. I was not public. The decision to put my name on it came later. The next day, a good friend of mine, Nathaniel Hoffman from Boise State University's online journal, "The Blue Review," called me up and he said, Liza, I want this story. And I said, sure. Yeah, you can print it, Nate.
LONGAnd he said, no, I want you to put your name on it. And we talked through the ramifications of that because, obviously, it was a big decision. Stigma from mental illness is so huge. I don't think you ever predict something going viral and Nate and I certainly didn't. But what Nate told me was until someone puts their name on a story like this, it's not real. And that was very meaningful to me.
GJELTENNow, I have to ask you because you did write about this in your book, what kind of second thoughts or what kind of later thoughts have you had about writing that post and identifying yourself as the mother of a troubled son?
LONGI will tell you the consequences to my family immediately were devastating. I do write about this in the book. I lost custody of my younger two children for a time and had to fight very hard to get them back.
GJELTENWhy -- what was the connection there between...
LONGAn Idaho judge wrote a very interesting ruling that said I would have either put my son in residential treatment or give up custody of my younger two children. The ruling itself is complicated and strange and it shows how ill-equipped our family law system is to really deal with the problem of mental illness in children.
GJELTENWell, speaking -- you had regrets. You suffered consequences for writing that blog post and yet, you did go on to write a book, "The Price of Silence: A Mom's Perspective on Mental Illness," so clearly you felt, at some point, it was important for you to go public in a major way with your experience.
LONGYes, yes. I had already taken the hit, to be honest, Tom. Everyone knew I was that mom in Idaho whose son had had violent, explosive rages. And by the way, I love my son so much. He's really just an amazing, amazing human being. But since I'd already taken the hit, I thought, I want solutions. I want to know how we can do this better. And in the book, I really detail a lot of what's broken in our system, but I also talk about possible solutions. There are answers out there for families.
GJELTENWell, I'm gonna ask you if you would read the opening section of your book. You write -- I know you have another job, but you're also sort of a semi-professional writer and you write very well. Why don't you read us the beginning of your book, "The Price of Silence"?
LONGYes, thank you. "If your child does not have a mental illness or mental disorder, then my normal is not your normal. On the surface, my life may look like yours, but for the one in five America children who will experience a serious and debilitating mental disorder at some point in their lives and for their families, a normal day may include a three-hour tantrum, a frightening manic cleaning episode, bullying, both giving and receiving, refusal to wear any clothes with tags or eat any food that is not white or red or brown, depending on the child, threats of harm to self and others, visits from law enforcement and even a trip to the hospital or juvenile detention center.
LONGI'm a single mother with four children and a career in student services at a health sciences two-year college. A typical weekday in my house starts early. I wake Michael up at 6 o'clock a.m. so he can catch a bus at 6:15 to a special alternative school for children with behavioral and emotional problems. Our school district has decided that these children cannot attend mainstream classrooms.
LONGThe school is on the other side of the valley from my modest townhome in the 100-year-old Collister neighborhood of Boise, an area where roosters still crow and horses are pastured just minutes from State Street, one of the busiest thoroughfares in the area. If Michael misses his bus, my entire day cascades into chaos. Michael cannot wake himself up. Although he almost never loses a game of chess and he studied algebra as a sixth grader, he struggles with day to day activities that most of us take for granted, like waking himself up on an alarm, brushing his teeth or even tying his shoes.
LONGLike many teens, he's not a morning person and the early hour is difficult for him. Unlike most teens, he can become unpredictably violent at even the most mundane request, as he did one morning when I told him he was wearing the wrong color pants. That morning, he ended up at Intermountain Hospital, the only inpatient acute care mental health facility other than that Ada County jail in my community. That was not a good day. Michael's school has a strict dress code, black or khaki pants and a plain dark green, blue or black shirt.
LONGOn a good day, he dresses appropriately and takes his medications without argument. He's currently on four different ones, trileptal and lithium at night, bupropion and intuniv in the morning. On a good day, he eats a key lime-flavored yogurt for breakfast or grabs a bagel on the way out the door. He's not allowed to bring books or a backpack in or out of school. Every day starts and ends with wanding to detect any weapons he might have stashed in his pockets. Because Michael so often finishes his work early, we got special permission for him to bring in outside books to read, usually "Harry Potter" or "Percy Jackson."
LONGBut that concession quickly became a point of contention with staff when he would retreat into his books rather than do his classroom work so he lost that privilege. On a good day, Michael leaves the house at 6:15 for the bus stop dressed and fed and medicated. On a good day, he participates in his classes and returns home to his daycare provider at 2:45. On a good day, I enjoy a pleasant and productive work day free from calls from the school or worse, the police. Not every day is a good day."
GJELTENLiza Long reading from her book "The Price of Silence: A Mom's Perspective On Mental Illness." So Liza, I have to ask you, that's a good day, not every day is a good day. Tell us about a bad day.
LONGWell, I think I described a typical black day in...
LONG...the blog post. A bad day might end with police. It might end with my child in juvenile detention. Michael has been in juvenile detention four times and every single time was the result of behavior symptoms of his illness.
GJELTENYou write a lot about the involvement of the criminal justice system, about mentally ill children's involvement in the criminal justice system. How do you view that? Do you see that as something that, at times, unfortunately, is necessary or is this one of the real failures of the way our society deals with mental illness?
LONGI think this is one of the great moral problems that faces our generation. We have chosen, as a society, to treat not only adults, but also children, who have mental illness in jail. People don't want to believe this, but it's true. In my own state and in many states, just to get the care that you need for your child, you have to charge your child with a crime. And I promise you, Tom, there's nothing harder than watching your own kid handcuffed and put in the back of a police car.
GJELTENBut you had to do that. You've had to do that.
GJELTENAnd you -- I mean, you have a responsibility because you are a mother of other children as well not only to look for your own personal protection, but also the protection of your children. I mean, your son, during his terrible moments, threatened your other children as well, right? He has done that, right?
LONGHe's never physically harmed my other children, except for one incident on the playground, but I was usually -- I usually took the blunt of -- the physical blunt of his rages. But he would absolutely threaten to kill himself and our family.
GJELTENAnd tell us about the safety plan that you had to put in place.
LONGEvery family who has a child with mental illness must have a safety plan and ideally that should be worked out, both with your child and also with your child's care provider, psychiatrists, therapists, even, in my case, child protective services because all of your children need to be safe. I think people don't understand the extent to which mental illness is a whole family issue. Every person is affected by the child's illness.
GJELTENLiza Long is the author of "The Price of Silence." We're gonna take a short break. We'll be right back.
GJELTENWelcome back. I'm Tom Gjelten. I'm sitting in today for Diane Rehm. And my guest is Liza Long. Liza is the mother of a mentally ill child, and she has written a book on what it's like to deal with mentally ill children. The book is titled, "The Price of Silence: A Mom's Perspective On Mental Illness." And this all began, Liza, when you wrote a blog post titled, "I Am Adam Lanza's Mother."
GJELTENAnd, of course, Adam Lanza is the mentally ill son who killed all those children at Sandy Hook Elementary School. But he began by killing his own mother, so obviously you're not Adam Lanza's mother. We actually had a listener tweet say, "You should clarify that Liza Long is not Adam Lanza's mother."
LONGOh, I'm definitely not. And I'd say I'm also not Adam Lanza's mother because my son's future will be different. For me, that's become a mission.
GJELTENDo you -- and this is actually something important. Do you feel sympathy for her or do you really see her in a completely different light than you see yourself?
LONGI -- the question on Nancy Lanza is complicated. And the reason I wrote what I did, Tom, is because I wanted people to understand that no mother, certainly not Nancy Lanza, holds their newborn baby in their arms and says, I -- I envision a future where you grow up and shoot first graders. That is not what any mother wants for her child. And in Nancy Lanza's case, I actually sympathize greatly with her. I have to admit, I don't understand the gun piece, but I…
GJELTENBecause she gave him -- she provided guns to him.
LONGRight. But, again, there was -- there were no signs for her that Adam would be violent. I think we have to remember that every family is unique and we don't really understand what went on in the Lanza home. But I think what we do know is that she loved her son and that she did not want this future for her son. And for me, I see it as a failure of our broken mental health care system that we don't provide the supports for parents and families. It was clear that Nancy was trying to get help. But where do you go? How do you even talk about these things?
GJELTENHow old were you -- how old was Michael -- I should say -- when you realized that he was mentally ill?
LONGWell, that's a complicated question because, as I detailed in my book, like many families, we went through a long progression of what I kind of described as Ouija board diagnoses with him. So I did notice he was different when he was very young, when he was a toddler for sure. He would have terrible night terrors, wake up screaming. At the age of four, he actually told me, I'll never forget, I just want to be a zero, mom. I just want to be a zero.
LONGAnd I remember thinking to myself, wow, this is not in how-to, what to expect from your preschooler, it's not in that book. There's not really a manual or a guidebook for how to deal with thoughts of suicide from a four-year-old. It's not something we expect. But I've heard this from so many other families. And so, just the -- what I would describe as the sensory swamp that my son was living in because of a neurobiological brain disorder is making life so painful for him. And sometimes one of the behavioral symptoms would be an explosive rage.
GJELTENOkay. So you saw this even as a four-year-old. At what point did you get medical support? At what point did you actually have a medical professional tell you what was going on.
LONGLike most families, my journey began once Michael was in public school. So even at the age of five, we had a clear the room order in his kindergarten where the entire classroom would be evacuated if he went into a rage. At that point, you have to face that your child has a medical problem. Again, like many families, we looked at autism spectrum first, and then moved through ADHD, oppositional defiant disorder, multiple diagnoses, numerous medications that I detail in the book and nothing worked.
LONGAnd I've often said, you know, if you took your child to the doctor with a stomachache at the age of five and nine year later you still didn't know why his stomach hurt, you would be frustrated. You see your child in pain, you want to help and there doesn't seem to be anything that you can do.
GJELTENWell, I can tell you, Liza, that, and I'm sure you know this, there are a number of -- just by the reaction to your blog -- there are a number of mothers who can relate to what you are saying. We have a comment on our Facebook page from Cathy who says, "I have an 11-year-old bipolar son who is medicated. He has been since age six and under the care of wonderful doctors but still very challenging."
GJELTEN"I love him with all my heart and can't imagine where he or our family would be if we didn't have professional help. It's draining mentally, physically and financially. I will continue to fight to help him. It's not easy, but it helps to know we are not alone." She says, Liza, it's draining mentally, physically and financially. You write about all three of those burdens in your book.
LONGAbsolutely. Yeah, the financial cost alone -- in my case, I have private health insurance. But even with that, his therapies and medications can be about a fourth of my take-home pay. In many families' cases, they're forced to go on Medicaid just so they can get the services that they need for their children. I was even once told to quit my job so that my child would have access to better services.
GJELTENI actually want to bring in Donna now, who is on the line from East Berlin, PA. Donna, thanks for calling "The Diane Rehm Show."
GJELTENAnd your experience -- can you hear us? You're on the air.
DONNAYes, I can. Yeah.
GJELTENYeah. Yes. Share your story with us.
DONNAThank you so much for having Liza on. I did read her blog when it came out. It was given to me by another mother. And it's totally correct. So, I wanted to share that my lifeline has been support with other parents to use them to get -- be able to have enough strength to move forward. And so far, we've been using the NAMI, National Alliance for Mental Illness.
GJELTENAnd that's a support group of some kind?
DONNAYes, it's -- it's nationwide and it's nonprofit. And what they do is we have classes that are called family-to-family. And that point, we're given information where we can talk with family members and exactly what Liza was saying. You know, how do you -- how do you talk to the medical system? How do you fight back when somebody says to you to quit your job, you know, because if you are Medicaid, you know, you can have it all. But in the meantime, you have no life for the rest of your family.
GJELTENYeah. Liza, Donna's talking about a support group and she lives in Pennsylvania. What's it like there in Idaho? I mean, Idaho is a much more -- you live in Boise?
LONGI live in Boise, yes.
GJELTENSo, do you have any kind of comparable support group to what Donna is talking about.
LONGWell, first, I want to acknowledge, she talked about NAMI, the National Alliance for Mental Illness. They're having their big conference right now here in Washington, D.C. And they're really trying to push for more unity within the mental health care system. But, yes, we do. I work with Idaho Federation of Families and they do something very similar to what your caller described with family support groups.
LONGFor me, speaking out, sharing my story actually enabled me to find those supports. Like so many families, I felt completely isolated, alone and afraid. And I even did kind of blamed myself because that's what we like to do as moms, right? We blame ourselves. Why is my child suffering? Well, I must -- I should do something different. So the caller is exactly right that family to family support groups are a powerful way to navigate an incredibly complex system that includes health care, it includes education. It also includes the juvenile justice system. You have to become an expert in all of those areas for your child.
GJELTENAnd you -- I mean, you throw around medical terms pretty intelligently. Clearly, you have been educating yourself about the precise medical condition that your son suffers from.
LONGIt's not just me. My son also educates himself. And I think that education is really powerful and important, because having information, keeping up-to-date on the current research from National Institute of Mental Health, other sources, these are great ways to give yourself hope. Right, that's how my son describes it. He reads quite a bit about his condition because it gives him hope. And there is hope. That's definitely a message in the book.
GJELTENI'm curious. Not being a parent myself of a mentally ill child, what is your -- I don't know this. What is your son's perspective on his condition? I mean, you've talked several times and you do in your book of almost a split personality of two different children. What -- how does he see the sort of that other side of himself?
LONGWe were having a conversation about this, all of us, the whole family the other night. And he was describing -- we were describing to him how afraid we would feel when he would go into these rages. My younger children and I were discussing this with him. And he looked at me and said something so powerful. He said, mom, if you think you were afraid, how do you think I felt? He said, I was terrified because I would feel myself slipping away.
LONGAnd he has no recollection of these violent rages when they happen. This is, again, pretty common for kids. No recollection of what happened. He's described it literally as seeing red, and then coming out of it and seeing the pain and the hurt that he's caused -- holes in walls, bruises on my arms, a whirlwind. It's so hard on him because he is such a loving and kind child by nature. And it's so clear to me, as I've watched my son, that this is a behavioral symptom of a neurobiological disorder. It's very clear.
GJELTENAnd you say that he's got almost an intellectual interest in his condition.
GJELTENHe studies it. He wants to learn about it.
LONGDefinitely. Yeah, he's -- as I described in the book, he's a very bright young man. And I do have to stress, too, one of the things that frustrates me about the system, through the course of writing this book, we actually found solutions that worked for him. So, while I was writing the book, he was hospitalized again in May 2013 and diagnosed with bipolar disorder. At the time I wrote my blog post, we had no idea what was wrong.
LONGAnd that diagnosis and the correct treatment, just adding lithium into his treatment plan, we've had no threats of harm to self or others, no explosive rages since May 2013. That's what I want for all families is the ability to find that treatment that works for your child and that works for your family. Every kid deserves this chance. He's back in mainstream school now.
GJELTENWell, you were saying during the break or before the show that you flew out here last night and you're going to be going back today. I'm sure that you need to stay close, right?
LONGYes, you have.
GJELTENWhere is he today?
LONGHe's at school. He's at school. And he's text messaged me. He's doing really well. His step -- his stepdad is with him, so he's definitely got adult supervision.
GJELTENSo you say that he's better as a result of an adjustment in his medication.
LONGYeah. Well, actually a correct diagnosis, I would say.
LONGBefore that time, before the bipolar diagnosis, we just didn't know what was wrong. And putting him on lithium really was a game changer for us. He's told me lithium gave me a life, and I feel like that's true. It's like it gave me a life too to some extent.
GJELTENBut is that, unfortunately, sort of the this illusion that it has to be finding the proper, one, diagnosis, two, the medication that goes with that diagnosis?
LONGWell, the challenge, Tom, as you know, is that this is such a complicated issue. And one of the challenges for me is that when we talk about mental health, we're really talking about a bunch of different things. That would be like, from a medical specialty, if we lumped all physical illnesses together. And the brain's a complicated organ. And everyone thinks and manages their condition differently.
LONGSo I don't really feel like we can adopt a one-size-fits-all approach to mental health. With my own son looking at serious mental illness, I do believe that medication is an important part of his successful therapy, just like we would not tell someone who had diabetes that they should just start producing insulin, we shouldn't tell someone who has bipolar disorder, schizophrenia that they should just stop thinking irrationally. It's the same sort of analogy.
GJELTENLiza Long is the author of "The Price of Silence: A Mom's Perspective on Mental Illness." She wrote a blog called, "I Am Adam Lanza's Mother." She did not mean she is, of course, not Adam Lanza's mother, but she was in the position of sort of knowing what that was like. You're listening to "The Diane Rehm Show." And, Liza, we actually have a caller from Sandy Hook, CT.
GJELTENMarie, you're on the line.
MARIEHello. I want to call in and address this issue of this mother. I have tremendous compassion for her plight. But there's something extremely offensive about her comparing herself to Nancy Lanza in any way or using this as some sort of a -- of a comparison. Because in Sandy Hook, I can promise you, we consider Nancy Lanza to be as complicit and as responsible for the mass murder of 20 six and seven-year-old little children and educators in school as was her son, the actual killer.
MARIEBecause Nancy Lanza had ample information that there was something with her son. Schoolteachers came forward saying as recently as high school they were contacting the mother, they were worried about this boy, they had their eyes on this boys, that there were -- many educators at the administration at the high school knew there was something wrong with him, that he was considered potentially harmful.
MARIEHe was known to be a weird, strange kid who was just one of these video game computer geeks. He was not engaged in any social activities or any group activities in the community. And instead of doing anything about that, Nancy Lanza decided to bond over -- or with her mentally disturbed son over guns and heavy artillery and assault weapons.
GJELTENOkay, Marie, let me interrupt you for a second. Are you -- your -- when you're critical of Nancy Lanza, you are talking specifically about her allowing Adam to have access to guns, is that correct? Or are you...
MARIEWhen she knew there was something mentally wrong with the boy, her bonding activity was to go to a shooting range with her son multiple times and go shooting with her son rather than seek out any help for him. And it's really dangerous for a mother, a father of any other mentally disturbed child to compare themselves to Nancy Lanza's behavior. If anything, they should separate from that and leave Nancy Lanza to stand in her own category. Because if anybody...
MARIE...could stop that killer, it was his mother long before he ever showed up at the door of Sandy Hook Elementary.
GJELTENOkay, okay. And I want Liza to respond to that. I would say, though, Marie, that one of the things -- points that Liza has been making is getting help for your son is not as easy as it sounds.
LONGYes, thank you for making that point, Tom. And thank you for your call. I understand that this is such a painful issue for your community. And I grieve with all of America with Sandy Hook and those poor families. But, Tom, you're exactly right. The challenges -- did Nancy Lanza know that her son needed help? I think we know that she did. However, just knowing that your child needs help isn't the same thing as being able to access the help that they need.
LONGAnd I think -- I don't want to sound critical of the caller, but in our sound bite society, it's kind of easy and kind of convenient to blame the mom. And that was exactly the point that I was trying to make when I wrote that essay is if you're going to blame Nancy Lanza, blame a mom like me. We are trying. We're trying to raise our kids. And another thing I want to say to the caller is, again, it's easy to stand outside and judge a situation when you're not living that situation.
LONGAnd in the case of the Lanzas, we don't know what was going on in their home. We don't know whether they had challenges getting help for Adam. But I think what we do know is that Nancy loved her son.
GJELTENAnd you did say in your book, just to be clear, you do say that you would not -- you could not imagine giving your son, whom you call Michael, access to weapons.
LONGOh, good heavens, no. Although I don't worry so much about school shooting. For me, the real concern when we talk about guns and mental illness is suicide. It's a remarkably effective way to end your own life. And I think the way that mental illness has been tied to guns has been kind of strange by focusing on these horrific outlier events of mass shootings rather than the day-to-day tragedies that people are living. And to caller's point, there just -- there -- so often, there aren't solutions for families. There's no access to care.
GJELTENMm-hmm. Well, you know, we're going to take a break here. But when we come back, one of the things I want to talk about with you, Liza, is the -- what you have found to be kind of a division between parents, what was the term you used? Neuro-typical.
GJELTENIn other words, what some people would say normal.
GJELTENAnd kids who have trouble. You said the parents of these two kids -- these two types of kids often find themselves in conflict. My guest is Liza Long. She's the author of "The Price of Silence." We are going to take a short break right now. Stay tuned.
GJELTENWelcome back. I'm Tom Gjelten from NPR. I'm sitting in today for Diane Rehm who's getting a voice treatment. And my guest is Liza Long. She is the mother of a troubled young man and she has written book about what it's like for parents of children with mental illness. The book is titled, "The Price of Silence: A Mom's Perspective On Mental Illness." And Liza, just before the break, we had a woman calling. She's actually from Sandy Hook, Connecticut, where that terrible shooting took place.
GJELTENShe was very -- and she was saying that people there are very critical of the mother of Adam Lanza for not having done something about her son. And this brings up a kind of a sensitive issue and that is -- and it's something I want you to talk about. And that is, conflicts between parents of children who have the best interests of their children at heart and parents of children who are troubled, sometimes you have found that the parents of "normal kids" don't want the troubled kids to be around and may not even be that sympathetic with you.
LONGI'd say there's a real lack of sympathy for my situation. And it's an interesting -- for me, it's interesting from an academic level almost, I have to say, because I have three other children so I can appreciate where a parent is coming from when she calls the school and says, I don't want that weird kid in my child's class. It's funny that your Sandy Hook caller talked about that weird kid. I've heard that phrase about my own son many times.
LONGBut my son, I think, puts it really well. He says, mom, I'm different. When people get to know me, when they understand who I am and then they find out I have mental illness, it's fine. We're friends. We get along. The challenge is the stigma is so great and people are so afraid and things like Sandy Hook make us even more afraid, even though the chances of our children being harmed at school are very small.
LONGSo what's developed is really a school to prison pipeline and that's a result of zero tolerance policies in the school. Those were formulated after Columbine. I believe they were very well intentioned, but the consequence of that, then, is that children are not being educated, children like my son. They're being sent to juvenile justice and...
GJELTENNow, you just wrote a column in which you argue that children, like your son, should be mainstreamed, if that's still a term that's used, should be put in a normal school setting, and you got some pushback.
LONGYeah. There's some definite room for education, I would say. But, again, I'm sympathetic. I'm definitely sympathetic. I've been a classroom teacher myself. The classroom management issues are tremendous. My mom has been a first grade teacher for several years. I address those types of concerns in my book because I've very sympathetic to teachers who have to manage a very large classroom, maybe 25, 30 children, and out of those 25 or 30 children, five or six may have severe emotional or behavioral disturbances.
LONGFrom a day to day classroom management standpoint, that's a challenge. However, I do believe that we can mainstream kids, if they had the proper supports. I know my own son does really great as long as he has an aide who can accompany him and who can deflect things if they arise and make sure he has a place to go and calm down. And most kids really want to do the right thing if you give them the right environment and supports.
GJELTENLet's go now to Ron, who's on the line from North Carolina. Hello, Ron. Thanks for calling "The Diane Rehm Show."
RONOh, hello, Tom, and thank you very much for taking my call and thank you, Liza, for your blog and your great story. I wanted to comment because my own son is 18 and has been struggling with mental illness since he was 7 years old. And one thing I wanted to comment on was the difficulty in finding treatment and really two parts. The first is we were with a doctor until about three or four years ago and then decided we really needed to make a change.
RONAnd I asked some friends of mine, who's a psychologist, not a psychiatrist, who, you know, some recommendations of where we might go. And what we went through was, he said, well, you probably do want to leave the one you're at 'cause I know if I send him there, 95 percent of the kids that go there will be diagnosed as bi-polar. He gave me another name and I called the guy who was his first recommendation and he said, I'm sorry, I'm not taking patients right now, but he said, I don't believe in bi-polar diagnosis in children, period.
RONAnd then, we went to the third doctor and I said, I know there's this, you know, uncertainty about bi-polar, young age, yada, yada. He says -- and he said, well, we may not know exactly what it is, but your son obviously needs some help so let's start working through that. And that's where we are today, but really in three psychiatric professionals, we got totally different responses.
GJELTENYou're nodding your head, Liza.
LONGYeah. That's exactly what the experience is like. You've described it so well and it's so hard for families. I mean, that's exactly why it's so hard to get treatment. And I loved your phrase, I don't believe in bi-polar disorder. In what other branch of medicine could a medical provider tell you that his or her beliefs about a condition would determine whether your child could be diagnosed with that condition? We need better solutions. We need earlier interventions and we've got to be able to diagnose correctly, not just based on what providers believe.
GJELTENLet me read an email from Christine in Rochester, New York, on this very issue. She's says, "I'm a clinical psychologist who's been working with children and families for over 30 years. What your guest is describing is absolutely accurate. Our society has failed persons with severe mental illness, punishing them, locking them up, even in hospitalization, there is rarely actual treatment. Families are ashamed and alone. This is a very rough time to be in the mental health profession."
GJELTENAnother email, this is from Abraham here in Washington, D.C. And Abraham raises an important point. He says, "As a person with a beloved brother who struggles with severe and lifelong mental health conditions that resemble those you have described, I'm grateful for your work. My question is, how do you feel about involuntary forms of treatment for non-complaint individuals with mental illness? Do you think it's needed? Will it help families like my own and caretakers like my mom who give so much of themselves every day for years?"
GJELTENNow, you describe your son as being compliant, at least some of the time. What do you think of the question that Abraham raises?
LONGI'm so glad that that question came up because this is at the heart of a dispute about the country should do in terms of legislation about mental illness right now. You may know, Tom. I was one of the parents who testified to a forum after Newtown that was called by Representative Tim Murphy. He's written a bill called the Helping Families in Mental Health Crisis Act, HR3717, and it's been controversial for exactly the point that Abraham brings up, that it allows for assisted outpatient treatment.
LONGAnd that has been characterized as forced treatment, but what I would say is, lacking that option, forced treatment already exists in this country and it's called prison. And so I do support that. And it's not just me. My son and I have talked about this at great length and he said, I absolutely support assisted outpatient treatment because sometimes I don't know whether I'm sick or well and I deserve to be able to make the choice when I can think clearly.
LONGAnd so my son supports this. But there's a huge challenge. Even your previous caller whose son was 18, right now because of HIPPA laws, again, well meaning, sometimes parents can't even get information about their own kid's mental condition so you're a caregiver for your child, but you may not be able to talk to the psychiatric care providers or be a part of your child's treatment plan. And then, a third thing that's a challenge with the laws, there's an IMD exclusion right now in Medicaid so that people cannot get treatment, inpatient treatment for mental illness.
LONGPeople don't understand this. That's why we treat it in jail.
GJELTENWe have a -- actually have a child psychiatrist on the line, Tiffany from Houston, Texas. Hello, Tiffany. Thank for calling "The Diane Rehm Show."
TIFFANYHi. First of all, I wanted to say I'm so proud of Liza Long. It is so hard to be able to voice everything you're saying so absolutely right and accurately and it is so extremely hard for everybody who does not go through an everyday existence with people, family members or even know or people in your own school, whatever it is, that every day live with mental illness and can't have a solution, like you say, for their problems. There's so many angles to this, but yes, this country in bad shape regarding the legal systems, with mentally ill people.
TIFFANYAnd I think the crutch of most of it is educating everybody about mental illness, that it is not something that he is willing to be mean, ill-intended or people like that, those behavioral things you're seeing are mental illness. And because you can't touch it or do a surgical procedure to it, like you do in many other things in medicine, you can't really clarify everything to everyone and it doesn't seem logical to anybody who doesn't know, read and educate themselves.
TIFFANYSo therefore, all this huge stigma or the social assistance and medical assistance is so lacking, especially in Texas, but everywhere else in this country.
GJELTENTiffany, I don't know if you heard our earlier caller, Ron, who was talking about going to three psychiatric professionals. I don't know if they were all psychiatrists or psychiatric social workers. And getting three different diagnosis. Can you explain how something like that happens?
TIFFANYWell, to start with, let's go way back from our own education in medical school, it goes back and forth. That's part of the problem. We don't really know exactly what happens when or it -- the problem with developmental stages throughout life is that you cannot diagnosis with a full picture everything from you're very little because you see glimpses of the full syndrome. All the symptoms are not present at the same time or come on in the same sequence in everybody.
TIFFANYLike it's been said by many of the callers and Liza, it's -- if you see, like, somebody diagnoses ADHD, then oppositional defiance, and eventually bi-polar. But as a psychiatrist, I cannot say that was bi-polar, let's say, a year ago because I didn't have the full picture. There's glimpses of the symptoms, but I cannot put it all together until all the symptoms are present and that's not developmentally possible yet. So that's why it is so hard.
TIFFANYAnd that it also, that brings me to the point of development and guns. The other caller had mentioned the Sandy Hook lady that I understand her distress, but at the same time, not even a healthy child, like a non-mentally ill or ill at all in any way, developmentally inexperienced person cannot handle weapons that are lethal, in particular guns. Guns are made to kill. That's the sole purpose of a gun. Why would you do such a thing?
GJELTENWell, we saw -- and we saw a tragic example of what happens with that in that shooting range in, was it, Utah, I believe. Well, Tiffany, thanks so much for calling and sharing your professional expertise and thoughts on this issue. You are listening to "The Diane Rehm Show." And Liza, you write in your book quite a bit about the inadequacy of, well, pediatricians who aren't trained, don't get sufficient training in mental health and you also write about the shortage of qualified child psychiatrists like Tiffany who clearly takes her work very seriously, but you say they're too few and far between.
LONGOh, absolutely. And I think -- it was so great to hear Tiffany's perspective. I think that part of that is that the stigma of mental illness extends even into the medical professions. I remember one psychiatrist, who I loved, she had been told why would you waste your talent in psychiatry. And many people who do go into psychiatry have experience with a family member so they go in wanting to help. But I can only imagine the frustration as a provider to have to deal with a system that largely relied on symptoms.
GJELTENOur director just reminded me that the shooting range was in Arizona so I don't want to slight people from Utah.
LONGYou'll get a lot of calls on that.
GJELTENWell, you never can tell. You know, you mentioned one other thing, which I think that we need to pay a little bit of attention to and that is the financial strain that parents of mentally ill children have. You say that you are spending as much as a quarter of your take-home pay, even with good insurance, to care for your son.
LONGRight, right. And I have to stress, I am very fortunate. My employer has been very supportive, both of my research for this book and then I'm also, you know, when I've needed to take leave to care for my son. The cost to families can be tremendous, though. I know many people who do have to either quit their jobs or who lose jobs because of the erratic nature of caring for a child who has mental illness. I think I described in my book when, you know, you're in an important meeting and, all of a sudden, your phone starts blowing up with the numbers from the Ada County Sheriff's office.
LONGYou know that it's not going to be a good day. So financial cost is extreme, not just for families but also if you look at our overall mental healthcare system, because we do such a bad job at caring for children and families, we pay huge societal costs, both in lost productivity, in people going on disability because they can't be employed. And these are people who, with the right supports, could live happy, healthy, productive lives.
GJELTENLiza, I have to ask you another tough question. We had -- I don't see it right in front of me now, but somebody tweeted and they wondered about how your son felt about being identified in your book. Now, actually, you don't call him -- you call him Michael. His name is not Michael. But anyone who knows you probably knows who you're talking about, right?
LONGWell, the people who know me already knew, so. It's funny. One of the local journalists asked me that. She said, well, aren't you concerned about the stigma? What will his friends think? And I just said, no, on the air, but I'll tell you what I told her privately. I said, well, every one of his school mates has been to Intermountain Hospital. Every one of his school mates has been to juvenile justice. What stigma? How will them knowing that he's been there, too, change their relationship with him?
LONGThis is true for every single person at his school and that goes back to that idea of segregating people who have behavioral and emotional disturbances, which I do think is wrong.
GJELTENBut you did write that in the beginning, he was upset when you actually chose to wrote about this with your name attached.
LONGYeah. I have to stress, I did not consult him when I wrote that initial blog post. And I honestly think that was a mistake. I do think it was a mistake. We've worked through that. We've worked through the consequences together. Now, I consult him on everything I do so he knows -- he's probably listening this morning. He knows -- we did a joint webinar yesterday for International Bi-Polar Foundation. He's speaking out on his own behalf and I feel like his voice is so important.
LONGAs far as identifying himself, that will be his decision. That's not a decision I will make. So when he feels comfortable using his real name or a current image, that will be his decision.
GJELTENWell, that's terrific that he is now becoming an advocate for other kids with conditions like him, like he has. I should point out a couple things. One, your blog is on our website, drshow.org, so any listeners that want to read your blog can find it there. The book is "The Price of Silence: A Mom's Perspective On Mental Illness." And I did read somewhere that today is -- you may know this. Today, is mental health action day or something like that, is that right?
LONGYes, yes. And that's something that NAMI is working with too right here in D.C. today. So I hope that we can come together and we can get Congress to pass some meaningful mental health reform legislation.
GJELTENWell, thank you so much, Liza Long. I'm Tom Gjelten. You've been listening to "The Diane Rehm Show." Thanks to everyone.
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