Sometimes it seems to happen overnight. In other cases, parents know there is something different about one’s child from an early age. When it hits suddenly, a parent may see signs of mental illness creeping up only in hindsight.
No matter the evolution or specific diagnosis, the journey of parenting a child with mental illness is an unfathomable challenge, unimaginable to those who have not been the parent and witnessed scenarios that even in the retelling are difficult to believe. When a child becomes increasingly symptomatic, chaos erupts in the household and the lives of each family member are affected. Not just a little, but significantly. Managing this chaos while searching for solutions for the ill family member can feel overwhelming. Yet parents get through it. The Behind the Wall parents we interviewed describe the early stages of the illness in similar terms as the steep learning curve of boot camp training with an over abundance of emotional turmoil. But the learning curve sharpens parents into invaluable advocates in managing treatment for their child; they hold the whole health history from the smallest obscure observations to the concrete details of hospitalizations and medications.
Parents and families can be integral to the recovery process. Statistically, there is a higher rate of recovery for those who are well supported by a loved one and this is usually the parent. They work harder than anyone at keeping their child safe. They fight for a diagnosis and treatment and are usually best positioned to encourage compliance. Sometimes, they even enforce treatment because they know it’s best.
But then their child turns eighteen.
Says one Behind the Wall parent, “I wanted to help my son, but I was prevented from doing so.” What a difference a day makes. At eighteen, because of HIPAA (health privacy laws), parents are effectively excised from their child’s treatment team.
After a recent mass shooting (pick one) many commentaries in the media sphere asked, “Why didn’t the parents do more to prevent this?” I’ll concede discussions of gun laws to others. And while it’s unfair to conflate violence with serious mental illness because statistics don’t bear this connection, these incidents bring the stigmatized topic of mental illness bubbling to the surface. And as an advocate, one must seize the conversation to explain that there are a myriad of reasons why a parent doesn’t have all the power to help an adult child living with serious mental illness, and the important ones hinge on eighteen.
Even when symptoms of one’s illness are present throughout a child’s whole life, behaviors often become more severe during teens and early twenties. It can take months, even years to obtain a proper diagnosis and treatment particularly when substance use is involved. It is not uncommon for a person to try several medications before finding one, or a cocktail of as many as seven at a time, to become stable not to mention functional. What may work for a year may need to be reduced, increased, or changed later. In Andrew Solomon’s New Yorker article, “The Reckoning,” Peter Lanza, whose son was the Newtown shooter, describes how Adam was given medication that caused him serious side effects. It is inferred that the medication trial did not proceed. Adam refused treatment. Usually one must try several before getting it right, though convincing a person to try medications that make one feel lousy, at least at first, is easier said than done and truthfully, all medications have some side effect. A feature common to serious mental illness, anosognosia, is defined as the inability of a person to comprehend he or she is experiencing mental illness. And it’s another serious impediment to convincing one into treatment compliance. If a parent is fortunate to obtain a diagnosis and a treatment plan that has promise for their child, it offers hope that the individual will stabilize and recognize just how ill they were before treatment. But tick tock; the clock counts down to the magic hour of one’s eighteenth birthday.
. . .expecting a person who is experiencing psychosis to willingly sign a release, much less ask the medical staff that he wishes to do so is at times, unrealistic.
Treatment cannot be enforced on a person who is over eighteen and unless one’s child signs a HIPAA release, the person(s) who hold the whole medical history, the parent, can effectively be excluded from healthcare decisions. Parents have told us they call their child’s therapist and say, “I know you cannot tell me anything, so I’ll feed you information.” It bears pointing out that expecting a person who is experiencing psychosis to willingly sign a release, much less ask the medical staff that he wishes to do so is at times, unrealistic. Kerri, a Behind the Wall contributor, tried bringing clothes to the hospital that her son called to request. But because he forgot to sign HIPAA papers, and forgot to tell her where he was, she couldn’t bring his clothes or even visit him for days. Losing a healthcare advocate in a parent because of the over-eighteen law presents serious dangers considering that a parent knows through shared experience how a certain medication has triggered mania for their child, for example, or severe and lethal tachycardia.
Fortunately, these barriers that parents encounter have become a salient to mental healthcare discussions and better yet, to proposed legislation (see links below for information about Murphy’s Law.)
No person in this known world excuses violence perpetrated by a person who lives with mental illness or experiencing psychosis. Those who do live with and successfully manage their mental illness most certainly don’t accept this message. Instead of asking, “Why didn’t the parents do something to prevent this?” Perhaps the real question is, “How can we address this over-age-eighteen issue?”
Because the truth is, these parents need our support not our judgment.
Andrew Solomon, “The Reckoning” New Yorker: http://www.newyorker.com/reporting/2014/03/17/140317fa_fact_solomon?currentPage=all
Comments are always welcome:
Recommended links regarding proposed mental health legislation:
OP-ED: Overhaul of mental health care long overdue, by Rep. Tim Murphy, Philadelphia Inquirer (January 26, 2014)
Mental Healthcare in the U.S. Needs a Check-Up, Editorial Board of the Washington Post (April 16, 2014)
Better Care for the Mentally Ill is Crucial for Our Society, Dr. Cyril Wecht, M.D., J.D. for the Pittsburgh Post-Gazette (April 13, 2014)
Worthy of Support, editors of the Toledo Blade (April 9, 2014)
Worthy of Support: Murphy’s Mental Health Bill Faces the Critics, editors of the Pittsburgh Post-Gazette (April 6. 2014)
The Definition of Insanity, editors of the Wall Street Journal (March 31, 2014)
A Mental Health Overhaul, editors of the Wall Street Journal (December 26, 2013)
Sound Off: Mental Health Reform Needed to Aid Patients, Dottie Pacharis for The News-Press (Fort Myers, FL)
We need to take a proactive approach with mental illness, Guest Opinion by Liza Long (author of “I Am Adam Lanza’s Mother”) in the Idaho Statesman (January 13, 2014)
A Law to Fix Mental Health Care, Dr. Sally Satel for Bloomberg (December 22, 2013)
All in the Family: Mental Illness and Caregiving Across the Generations, Rachel Pruchno, Ph.D. for Psychology Today (January 15, 2014)
New Bill Decreases Mental Health Funding, Increases Mental Illness Funding, DJ Jaffe for Huffington Post (December 18, 2013)
Murphy’s bill a step toward mental health reform, Observer-Reporter (Washington, PA), (December 21, 2013)
San Fran should take up Laura’s Law again, Amy Yanello, San Francisco Chronicle (December 20, 2013)
Rep. Murphy’s Bill Would Shift Focus: Make Major Changes In Mental Health Care, Pete Earley, journalist and father of mentally ill son
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.”
At 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.
Your comments are welcome:
In her widely reprinted essay, Welcome To Holland, writer Emily Perl Kingsley aptly describes the experience of having a child with special needs akin to landing in Holland when you’ve made extensive plans to go to Italy. While Ms. Kingsley used the analogy to describe her life raising a child born with Down’s syndrome, parents interviewed for Behind The Wall, whose children live with serious mental illness, were often confronted with a similar destination diversion—though usually not until their child’s teen years. They’d gotten to know their son, watched him develop skills and talents and then he changed. He could no longer play the cello, or read a book. A once-academic daughter couldn’t attend school. Maybe in hindsight the child was more sensitive than most, but one mother described her experience by saying, “This was like having a different child. Like one day we opened the door to find someone else had moved in.”
What is always remarkable, though, is the way parental love can take a person to the far away reaches of emotional strength, present new views one may never have come upon had they not, to use the analogy again, been dumped into unknown territory. We encountered this kind of heroic parenting in our collection of stories about mental illness, as did Andrew Solomon, in his brilliant book, Far From The Tree ( http://andrewsolomon.com/books/far-from-the-tree/ ) in which he interviews parents of children born under challenging circumstances, with unexpected identities or differences. Parents in Solomon’s book and those we met, exemplify parental strength, devotion and endurance, and more importantly, how they reached a metaphorical terra firma or redefined it.
To grapple with the unknowable, one mother we interviewed, Delia, introduced the term, “radical acceptance.” It’s a profoundly liberating term in many contexts. Delia’s daughter was diagnosed with a serious mental illness with symptoms that include bulimia, cutting, and anxiety. Delia’s daughter has always been a “difficult” child. Delia explains, she is not “okay” with the fact of her daughter’s illness, but she has reached “radical acceptance,” which means she understands the illness will always be part of her daughter’s life and therefore her own life, but she is not happy about it. She accepts it and she mourns it, in a loud and private way. This concept of radical acceptance has enabled her to cope, and be supportive to both her daughter partner. Her ability to accept without welcoming the concept is critical; in order to address her child’s illness effectively with early treatment, the facts of it must be accepted even though a parent mourns the implications.
No parent ever wants to accept his child has any serious illness, much less a highly stigmatized (and often very complicated to treat) mental illness. Most parents want to scream. And that’s where the beauty of “radical acceptance” is realized. Merriam Webster, in part defines “accept” as “… to endure without protest or reaction… to regard as proper, normal or inevitable… to recognize as true…” Certainly, mental illness can’t be “the normal course of things.” Some will want to deny it, or look for signs that the diagnosis is faulty, or maybe, as one parent put it, “Wonder if maybe he just smoked a little too much pot.”
Radical acceptance gives us an out. It allows us to have a stance that we accept the diagnosis, but don’t have to regard it without at least some internal protest or reaction, or regard it as proper, normal or inevitable. But we can radically accept that it exists and it must be addressed. We accept that we love our child, but we don’t like it—the illness. Not one bit. Radical acceptance allows us to rise to the occasion while acknowledging it’s not exactly what we’d wanted for our child.
Now, let us explore where we are.