What can Andrew Solomon’s interviews with Peter Lanza really teach us?

Original image courtesy of www.afranko.com

The portrayal of Adam Lanza by his father, Peter, in Andrew Solomon’s The Reckoning, dated March 17th in The New Yorker is eerily familiar to a parent whose adult child lives with serious mental illness such as bipolar disorder, schizoaffective disorder, or schizophrenia. While Adam Lanza was diagnosed with autism and later obsessive-compulsive disorder, the deep pain, depression, self-loathing, isolation, and anguish Adam seemed to have been experiencing is similar to symptoms of serious mental illness. Peter Lanza, according to Solomon’s article, now believes that his autism diagnosis masked mental illness.

Mr. Lanza granted many long interviews (six hours in length over the course of six months) with Solomon because of his well-earned reputation of journalistic integrity, including the manner in which he respectfully represented parents of criminals for his book, Far From The Tree. Solomon’s aim was not to present fodder for societal judgment, but to provide insight about this troubled boy, his family life, and attempt to resolve the mystery around the Sandy Hook massacre. But in his interview with Katie Couric, Solomon notes that he came to realize we will never know Adam’s motive for the killings at Sandy Hook and further explains to Terry Gross in his Fresh Air interview on NPR (air date March 13, 2014) that what triggered Adam’s rampage “will forever remain a mystery.” The purpose of the article, he tells Couric, is to provide accurate information about Adam Lanza from a viable close source, and with hope, prevent a similar event in the future.

For his part, in granting interviews, Peter Lanza does not appear to be seeking forgiveness or sympathy; Lanza desires to assuage victims’ pain and provide the facts about his son’s troubled life. Mr. Lanza, distraught by his son’s actions, bravely admits that, though he loved “this weird little kid,” he wishes his son “had never been born”—a shocking statement bandied about by media for obvious reasons. Nobody ever says that about one’s own child. But it’s understandable, sort of, for a parent whose child inflicted unfathomable pain on others, or for one who has seen his child suffer from serious, oft times self-injurious mental illness.

But there’s another message Peter Lanza wants to get off his chest even more: that what happened to Adam, that he became a disturbed young man who could commit an unimaginable act, can happen to anyone’s child. But I don’t think Lanza’s message is accurate. And it may be misguided to perpetuate it without clarification.

Peter Lanza wants others to know that no level of devotion can prevent one’s child from becoming afflicted with mental illness.

Where Peter Lanza’s statement rings true is that no parent has full control over illnesses that are caused by a confluence of factors including genetics, environment, and, or substance use. Second, when an illness affects the child’s behavior and impacts the whole family, it can be devastating for any family, not just the Peter and Nancy Lanza’s of the world. And third, mental illness does not discriminate across gender, ethnic, religious, or socio-economic lines. Peter Lanza wants others to know that no level of devotion can prevent one’s child from becoming afflicted with mental illness.

But Lanza’s statement, that anyone’s child could turn out like Adam, or even Solomon’s observation to Terry Gross that his own “sweet children” could grow up to represent so much evil, is a potentially damaging message contributing to the mental illness stigma that quite possibly prevented appropriate treatment for Adam Lanza in the first place. While the chaos and disruption of living with a seriously mentally ill person as experienced by the Lanzas exists behind the walls of an astonishing number of homes throughout the world, only a small percentage of the mentally ill are violent. Statistically, a person with mental illness is more likely to be victimized by another or self-harm than inflict violence on another.

Both Couric and Gross noted that Peter and Nancy Lanza, Adam’s mother, though divorced, worked together as any good parents should in seeking professional help for their son from prestigious medical institutions. The question both interviewers ask is why didn’t these professionals see that he had violent tendencies? Solomon counters that, while Adam Lanza had a disturbing, known interest in violence, citing a character in a book he created as an elementary student and the postmortem discoveries of his activities online, his attraction to violence was understood to be within a normal range for many young boys “who grow up to have normal lives.” Perhaps what should have been asked was, so, why didn’t these professionals identify the severity of Adam’s mental health issues or have him hospitalized? Because according to Peter Lanza’s description, Adam Lanza suffered deeply for a significant period of time. Why, when Nancy Lanza was complaining that Adam was breaking down crying and incapable of functioning, was it not suggested he receive inpatient treatment?

Sadly, this is the vexing complication of which parents whose children suffer with mental illness are dangerously familiar. Peter Lanza claimed that deeper issues were masked by the autism diagnosis. And in fact now claims he won’t accept that Adam wasn’t mentally ill, because how could any sane person commit such an act?

But with regards to why no professional identified the severity of Adam’s illness, It is entirely possible and not uncommon, according to parents we interviewed for our story collection, Behind The Wall, that when Adam met with professionals he was able to “fake” being well. He may not have disclosed symptoms he knew were out of the ordinary. Many parents note their child can pull it together for a doctor or law enforcement for short periods of time. If Adam couldn’t accept his autism diagnosis, he sure wasn’t going to let a doctor witness symptoms of mental illness. Without written consent, privacy laws (HIPAA) would have restrained doctors from speaking directly to parents about Adam’s health. If Nancy was hiding the dark challenges of her own life and Adam’s behaviors from his own father (i.e. when Nancy was only able to communicate with Adam by email), then would she disclose this to a therapist?

So, why would Nancy possibly choose not to pursue a more adequate diagnosis? Better treatment? Solomon has astutely observed that parenting decisions fall into the categories of make things peaceful now or allow things to become more difficult in order to have a better long term solution and that Nancy seemed to almost exclusively choose appeasement now likely because of how difficult her life had become with Adam in general. Parents whose children live with mental illness describe chaotic homes, and feeling mentally, physically, and emotionally exhausted all the time. So, it makes sense that appeasing Adam’s idiosyncrasies (she had to walk a certain way, he wouldn’t allow her to lean against walls) in many ways, was the path of least resistance.

No one ever wants to admit one’s child has a serious mental illness because of the stigma. Even when symptoms are clear, which Peter acknowledges they were. For many, autism is less stigmatizing than schizophrenia. And unless a parent accepts a diagnosis, their child never will. Compounding this damage is that statistically, those who live with mental illness are more likely to reach recovery when there is a community—family members for support. No one ever recovers from any illness without first accepting the diagnosis and those living with mental illness almost always require a caregiver / advocate.

But even if Nancy Lanza understood her son’s illness, he was clearly not cooperative and would not participate in therapy. She may have been able to commit him to an inpatient treatment facility. But doing so would have required innumerable steps and consultations for a boy who wouldn’t talk to her. Parents have told us that they feared pushing for involuntary commitment because, as in Nancy’s case, the parent is the only connection with the ill person, and making him angry to the point of cutting off relations could result in a steeper, more devastating decline; a life on the streets, homelessness, was Peter Lanza’s fear. Nancy, herself, had mentioned to a friend that she feared she “was losing Adam.”

Boy-standingaloneAt some point Adam Lanza had been prescribed the antidepressant medication, Lexapro, from which Adam suffered extreme side effects. But there is no mention about trying another medication, which is the usual course for those seeking treatment for a brain disorder. Did the parents give up after that? Did they know that there’s a trial and error process with medication? The Lanzas didn’t seem to know, and Solomon’s piece does not address that obtaining a mental illness diagnosis and an effective treatment plan is almost always a long and arduous journey of trial and error. Ask any of the parents we interviewed. And even after a diagnosis is determined, there are many adjustments to the treatment plan along the road to recovery.

It’s possible that Adam’s parents could have continued working with him to accept that he was unwell, that the frustration and anger he felt could have been alleviated with professional help, but clearly, this is easier said than done. Adam Lanza seemed to suffer from anosognosia, a feature of serious mental illness in which the patient cannot see how ill they are. Convincing an ill person to willingly partake in treatment is an important piece of the recovery puzzle.

Looking back it is clear that Adam Lanza needed mental health treatment and though no one can accept his actions as justifiable, it is becoming increasingly clear how effective treatment eluded Adam Lanza and his family.

But to say that anyone could find oneself the parent to a child who grows up to act out a violent rampage does not quite sit right.

Every time a person goes on a murderous rampage, parents whose children do live with a serious mental illness…simply cringe. 

Every time a person goes on a murderous rampage, parents whose children do live with a serious mental illness that includes features of psychosis, simply cringe. They cringe because they know these events reinforce the myth that all individuals who live with mental illness have the capability for such atrocities. This is simply not true. And I don’t think Solomon believes this either.

It sometimes feels like we’re talking about the Lanza’s so that we can point at Nancy and Peter Lanza’s parental failings. But passing judgment is of no value. While Nancy’s experiences of feeling imprisoned in her own home, and the chaos and isolation her son created goes on behind the walls of millions of homes throughout the world, mass murder is not usually part of the equation. If learning about Adam Lanza from his father offers no key to unlock the mystery behind his motive to murder and provides little palliative for Sandy Hook victims, then, to rephrase Couric’s question, what does Peter Lanza’s story provide for us?

Solomon’s comprehensive discussions with Peter Lanza should be seen as a giant step toward understanding that yes, any parent may find oneself in a complex parenting dynamic. This giant step is only worth Solomon and Peter Lanza’s generous contribution if the next steps lead to a more compassionate understanding of mental illness, an awareness of the importance of early and accessible treatment, and that parents like Peter and Nancy Lanza are not alone.

 

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Eulogy for Michele: Defining the Success in My Sister’s Life.

Our guest blogger is writer Michael Ross. His sister Michele lived with bipolar disorder and substance abuse. Over time, the side effects of the medications necessary for Michele to function took their toll. In his eulogy for his sister, Ross makes sense of what her much too brief life meant for him and her loved ones.

Michele

Michele with Kate and Daisy.

While my sister Michele was deathly ill and in limbo, I was struggling to find a way to think about it. My wonderful wife Markie, who has helped me immeasurably with Michele, out of the pure conviction of her belief system said something like, “I think her soul is waiting to break free. And after that happens, she’ll be purely Michele without all the burdens.”

In that moment I felt a sense of release. The situation remained crushingly sad but now it was fitted into the context of nature eventually taking care of us all.

To honestly and righteously celebrate my sister, I turn to the soul of the girl. And to do that, we have to jump back into the 1960s…

Michele was the first person I ever knew who was truly avant guard. Creativity flowed through her. It was “stream of consciousness” in nature. In 1966 when she was fifteen, she won an essay competition and was invited to read her work in front of the congregation at our Temple— Temple Beth Hillel. It was called, “Fairytales in the Grass— a surrealistic sermon.” This was the moment I learned she was avant guard, although I didn’t know what that meant back then. While Michele was on the pulpit spinning her psychedelic metaphors, I sat next to my dad who seemed to have restless leg syndrome. The poor guy was unsettled by the force of what she was saying. I was too young to get her story, but I knew there was music in her words. She finished by quoting the end of the Diary of Anne Frank where Anne says, “In spite of everything, I still believe that people are really good at heart.” There was complete silence… then a stirring in the congregation at which time my dad issued a one-word critique under his breath: “Jesus.” But after the service he was met by a wave of people, a lot of whom were his age and were genuinely moved by his daughter’s speech… And “Jesus” turned to, “Thank you very much.” I realize now he was completely flummoxed. Because she was avant guard.

In her high school years she played piano, guitar, wrote songs. One of them seared itself into my memory. I’ve remembered the first verse my whole life:

Frankenstein’s in the womb of the mothers of invention. He’s silent and still as the luminous rays. As the sun piercing through my eyes to my brain. Telling me there’s no rain.

Now, I still don’t know what that means. But I do know that in 1967 it was as arresting as the song “White Rabbit” by the Jefferson Airplane.  At this time, along with being avant guard, Michele started an alternative spiritual journey from being the girl who was bat mitzvah at Temple Beth Hillel to the relentless Hare Krishna chanter in her room. All night, “Nam yo ho renge kyo.” And then early the next morning, I’d hear her quick footsteps to the front door. She’d open it and look outside at the empty curb in front of our house. She had not been rewarded with a car. So then, back into her room. “Nam yo ho renge kyo…”

In 1969, Michele went to college in Arizona and certain trappings of being avant guard, namely, drinking and taking drugs, overtook the creative part of being an artist. And here’s where I mourn. If she’d applied study and technique to her wellspring of talent, Michele might have become… you could fill in the rest of that sentence in so many ways. But this is where we have to re-calibrate what was success in the life of my sister. And see that her soul, which became weighed down more and more, always tried to find new ways to show itself.

After living in Portland for a number of years, she moved back to Los Angeles in the summer of 1976, admitting that she had addiction problems. A cycle began of staying sober, slipping, rehabbing, slipping. My mom and I wrestled with this new notion of “tough love.” Louise attended to Michele and advocated for her. I’m not saying theirs was the healthiest of relationships, but by God, my mom was steadfast and remained so, as it became clear that Michele’s problem was more than addiction and now included the diagnosis of bipolar disorder, which brought a much heavier challenge. But through all of this, Louise and Michele had a life— dim sum lunches, going to their favorite coffee places, bonding over my familial shortcomings.

Lucky for me I married Markie and we have our beautiful children. They were a tonic for everybody. Michele showed her sweet soul with my kids. When they were little she was “Aunt Michele,” who always made them things and was always interested in what they were doing. They didn’t spend a lot of time together, but my girls loved her. And when they got older, although Michele never explicitly said this to them, she once told me that she hoped her mistakes would keep them from making the same ones. I remember the moment I conveyed this to Kate and Daisy. I was proud of Michele. Proud of my big sister.

Success for her was in the work she did at TobinWorld, this wonderful school for developmentally disabled children. A couple days a week she made them lunch— hamburgers—which she did great her whole life. While the job may have at first been a kindness offered to her, the staff came to truly appreciate Michele. Because the kids loved her. Because she loved them and she’d say, “I get a kick out of ‘em.” She also found success in her work at the dog shelter where she volunteered, grooming and playing with dogs. Like with the kids, it was a pure connection. Most people love dogs. Nobody loved them more than her.

When our mom died in 1997, I became Michele’s conservator. Now that was a weird deal for both of us. Challenging for both of us. It’s not the natural way of things. But, it wasn’t without its humorous moments.

Some years ago, along her spiritual journey, Michele turned for comfort, unfortunately, to the televangelists. I’d give her spending money for lunches with her friends, for movies, Starbucks, and for cigarettes. Periodically, she’d ask for more money more often. When pressed, she’d admit it was for the guys on TV, that sending them twenty-five or fifty dollars seemed like a pretty good deal for getting into heaven. We’d debate this for a while. She’d make her points. I’d make mine. And finally, we would arrive at the same place. I would say, “If you’re gonna buy your way into heaven, you’re gonna do it with your cigarette money.” I’m proud to say she’d always pick tobacco over Pat Robertson.

Now… as I write this, at this point I’m feeling stuck… how do I close out a tribute to a life that seemed too soon to end?

I want to tell you guys, my family, my cousins, that while Michele couldn’t connect to all of us in a way that felt substantial… she was connected to us, in her own way. She always welcomed news about all of you. She always wanted to tell me when she had spoken to Aunt Ruth, or Chris, or Evelyn. She always enjoyed saying that they sent me their love and regards. And she always would tell me when she sent my regards back. Her life was hard work for her. It was often hard work for me. But, with maybe more objectivity than I had while I was her brother/conservator, I can see and appreciate that until recently, Michele was always trying to move herself forward.

In the days since she died, I’ve been listening to the 60s channel on satellite radio. The 60s were her time, and that music connects me to what I remember as her essential self. So, while I know what she was hoping would be her reward, here’s my version of it… It’s 1967 and she’s going to San Francisco with flowers in her hair.

For the last twenty-four years, Michael has been a writer/producer for network television comedies. Prior to that, he was an actor. Prior to that, he and Michele played guitars and sang together.

 


Eight things NOT to say to a parent whose child lives with serious mental illness and how to respond if you’re THAT parent.

ConversationBubbles2Plus, how to express genuine support.

 

“What parent doesn’t feel their child’s pain?”

This is what Esme, a contributor / parent to Behind The Wall asks. As the saying goes, “We are only as happy as our most unhappy child.” Parents take on their child’s pain and usually wish they could take it all in their stead. Our parental vigilance is heightened when our child is sick; we fiercely monitor how he is treated physically and psychologically.

This is the agonizing reality for parents of chronically sick children: witnessing the suffering that accompanies an illness. In the case of mental illness, much of this pain derives from societal judgment. With that in mind, imagine saying to the parent of a child who lives with developmental disabilities, “Boy, your son is really, really dumb! Ha!” No one would ever say such a thing. But Annie, a contributor to our Behind The Wall project, tells us that the parent of a boy who went through school with her son once said, “I saw your son on the street downtown. Boy! What a wacko he is!”

As if Annie didn’t know her son has some challenges. Thank you, but yes, she knows his behaviors are sometimes a little odd.

Now, you may be thinking that the person who said such a thing is a clueless person who, if you were to meet, anyone would recognize her as misguided. But in fact, she is a respected body/mind health instructor.

As horrific as this comment may seem, sadly it is not an uncommon experience for parents of adults living with serious mental illness (SMI). But parents like Annie and Esme become accustomed to a society that really doesn’t understand. Esme’s daughter lives with bipolar disorder and borderline personality disorder. Even after being told her daughter was no longer welcome at a friend’s home, Esme is circumspect. Regarding how others perceive her daughter and judge her parenting Esme says, “I’m a private person and also the type of person who doesn’t really care what other people think. It’s not their life and good for them they don’t have these problems. That’s the way it is.”

Here’s a guideline  one may find helpful: many parents describe the grief associated with having a child with persistent mental illness as similar to experiencing a death. But without the casseroles and flowers. 

It is difficult to understand the reality of SMI. Those of us who have a loved one who lives with chronic mental illness all agree that others should be grateful not to know about the challenges brain disorders inflict on both the ill person and his immediate advocates and caregivers. Even non-nuclear family members who don’t live with the ill person don’t really get it. Showing understanding to a parent of a child with SMI does require some degree of delicacy, the same goes for addressing a parent whose child has died or has any other challenging disease. Here’s a guideline  one may find helpful: many parents describe the grief associated with having a child with persistent mental illness as similar to experiencing a death. But without the casseroles and flowers. There is nothing you or anyone can say to make it better, so don’t try. But expressing compassion without judgment, is the gesture of support that is always valued.

Here are some common misguided comments similar to those parents often hear, and how to respond. Even in the tender place that parents reside, responding with honesty can assert one not as victim, but as caregiver and advocate as well as messenger.

1. Be glad it’s only bipolar and not schizophrenia

Response:  Both bipolar disorder and schizophrenia are serious brain disorders and both are difficult for the person living with the illness.

2. She’s just a drunk!

Response:  Yes, she has a dual diagnosis, which means she has a diagnosed mental illness and uses substances. She tends to medicate her depression with alcohol and it has become alcohol abuse, for which she is getting help. 

3. Aren’t you afraid that he’ll hurt you? Aren’t you afraid to live with him?

Response:  Not all people who live with mental illness are violent. I am not afraid of my son. He has never been violent. Actually, people with serious mental illness are eleven times more likely to be victimized by a violent crime than the general population.*

4. Isn’t mental illness just an excuse for bad behavior?

Response: Sometimes mental illness looks like ‘bad behavior’ to others. For instance, when police try to reason with a psychotic person who is hearing voices or experiencing delusions, the person’s behavior may seem odd or defiant. A person experiencing an altered reality may also be very frightened. The person cannot understand or respond to what is said because his inner process is altered, which makes him unable to hear the real world around him or process what is happening. Often, his response times become delayed also. He does not choose to have these experiences.

5. She’s really out of it.

Response:  Yes, she has psychosis. Because of her brain disorder she sometimes hears voices, and her reality is different from ours at this time. She does not choose to have these experiences. What is most helpful to her is kindness and understanding.

6. You poor thing, having a child like that. How do you do it?

Response:  It is challenging to advocate for an adult child with mental illness. There are no outward signs to indicate she needs to be treated with kindness. But there are stigma and myths that perpetuate misunderstanding about mental illness. The person who suffers most is the person with the brain disorder because she remembers herself as she was, and knows what she has lost. What’s painful for parents is that we cannot always help our child and sometimes others falsely judge us for our child’s illness.

7. How did this happen?

Response:  Mental illness is a confluence of genetics, environment, and possibly drug use. It is a brain disorder that we parents didn’t cause.

8. Why won’t he just take his meds and stay in school?

Response: Some people who live with mental illness also have anosognosia, a common feature of brain disorders that affects the self-awareness of one’s own illness. This is the reason many who live with mental illness don’t believe they are ill and therefore, don’t think they need medications. Some professionals and advocates believe that if mental illness was not stigmatized, those who need treatment would be more likely to embrace it.

Here are ways to communicate your support for a parent who cares for a child with a brain disorder:

If you want to learn more

You can say:

  • I don’t know much about brain disorders but explain her illness to me and tell me what I can say to her or how to act toward your daughter.

 After learning about their child’s hospitalization

You can say:

  • I’m sorry. Can I help your family while he is in the hospital? Can I walk your dog, or pick up food for you?
  • Would it be ok to send your child a card in the hospital?

Show general concern

You can say:

  • I’ve heard that it sometimes feels as though you have lost the child you once knew.
  • What would be helpful to you at this time?

You can and want to offer your time or perform a helpful task

You can say:

  • Any time you need to talk, I can listen.
  • Any time you need a distraction, call me and we’ll go to a movie, for a walk, out for coffee…
  • I am happy to offer my _______expertise.

Examples: cook meal, help navigate insurance, find a psychiatrist, research medications, walk the family dog, drive other children to school/ sports/ activities, help the family locate a Family- to -Family NAMI class or find other support.

And one more thought:  If you’re a parent who’d like others— friends or other family members— to understand your difficult parenting journey, or you have a family member whose child lives with SMI, we recommend this blog. Yes, a shameless plug. But we don’t sugar coat anything here and it has helped our own family. Maybe we can help yours.

* Mr. Insel’s blog entry that we have cited can be found at: http://www.nimh.nih.gov/about/director/2011/understanding-severe-mental-illness.shtml) Thomas Insel, NIMH Director, January 11, 2011.

We welcome your thoughts: