Being in public, even just standing in the grocery store line with her adult son, used to be embarrassing for Annie. Her adult son can’t be still. He’ll start bobbing his head. His body is jittery. He could easily be mistaken for a tweaker. She shrugs. “You get used to it,” she says. And he’s done worse.
Having a child who lives with mental illness feels sort of like being the parent who carries a newborn and two toddlers with head colds on the plane for a red-eye, only more extreme. Nobody wants to be near that mess, and everyone has an opinion. Also, there’s a lot of glaring.
In the stares and clucking of distaste that parents of atypical children often absorb, there seems to be a less than subliminal message that these parents chose this messy life and if they only desired things to be different, it could be so. As if these parents are weak. But parents of children with mental illness did not choose this club. Their child didn’t either. There are coping skills to be learned, but like those toddlers on a plane, you cannot control air pressure, or sinus pain, or always fix whatever is bothering them.
A person who lives with mental illness sometimes displays odd behaviors. A person with an injured leg may walk funny for a while and it’s the same for an injured brain; it’s not so odd when you think about it in that way, Right? What’s distinctly different is that a child’s mental illness challenges the stamina of parental love like nothing else. That’s in addition to judgment from others. Rebecca, one of our Behind the Wall parents, explained how excruciating it could be when her daughter, Stella, accused Rebecca that she was not her real mother. Stella’s father, Dan, recounts discomfiting conversations with Stella about the chip in her head. But for Stella, who heard voices clearly and sensed smells that others did not, the chip theory didn’t seem so far-fetched. It did make sense to her because her brain was feeding her different signals than what others know to be reality.
Simply spending time with a person who is experiencing a manic episode and/or psychosis presents challenges. It’s not easy. Depending on where a person is on the spectrum of recovery, there are frequent lapses in logical thinking that sometimes lead to risky behaviors and self-harm. Once, Annie’s son broke into a store after hours. He busted the door, got in, then realized he didn’t know what he was doing and left. He didn’t steal anything but damaged the door. His actions didn’t make sense.
Sometimes there are scenes. Ugly scenes. Jennifer, who lives with bipolar and borderline personality disorder, had developed a history of rages and alcohol use by the time she’d reached high-school age. This behavior was never permitted or condoned by her parents. In one incident, Jennifer had been drinking and was raging and throwing things at her boyfriend’s house. Her boyfriend’s parents banned Jennifer. Sadly, they must have also spread the word that she was out of control and it was about bad parenting. Jennifer’s sister, who had never been part of any such incident, was banned from spending time with the family that lived next door to the boyfriend. A loved one’s illness leaks into all aspects of family life.
As one Behind the Wall parent says, most people don’t know what it’s like to have a loved one who lives with mental illness. Good for them.
Only those who’ve parented a child who lives with serious mental illness can truly understand the challenges involved and the breadth of behaviors that arise because of the illness. Even for these parents, there is much experience required to distinguish between typical bad behaviors versus behaviors driven by the illness. They can’t possibly always get it right.
Parents of children who live with serious mental illness, like those beleaguered ones getting on a plane, aren’t asking for anything more than a little understanding. As one Behind the Wall parent says, most people don’t know what it’s like to have a loved one who lives with mental illness. Good for them. Living with a serious mental illness and being a parent/advocate has challenges that can only be fully understood by others living a similar experience.
Parents whose children live with mental illness aren’t asking anyone to sidle up to their chaos. These parents are also past wishing to be well-liked because major concerns are about keeping their child safe and stable. Parents aren’t asking for solutions, or agreement, or sympathy. Pity is not wanted. Just please don’t judge. And if one were so inclined, even a small gesture of support and kindness goes far for a parent enduring a journey where parental love is infinitely tested.
As always, your feedback is welcome.
Parents we interviewed for Behind the Wall often spoke about difficulties during the holidays. Regular life is disrupted. There’s pressure to be happy, c’mon, it’s the holidays! For some, there is unresolved family conflict. Whatever the reasons, there is added stress, a key ingredient in disrupting anyone’s mental health.
Personally, my favorite holiday is Thanksgiving. It’s the day we cook, eat, and hang with loved ones and close friends. It’s sharing in sustenance rather than materialism. Thanksgiving is about being genuinely thankful and also pulling up a chair to your own personal pumpkin pie. Keeping it simple and local is how our nuclear family does it. But not everyone has someone with whom to share the holiday or is fortunate (or selfish enough) to keep it simple.
And there’s the rub. Knowing many families have a loved one fighting on foreign soil, or fighting serious illness, or just plain fighting internally, can make it difficult to celebrate. Feeling grateful can feel like gloating when one considers day-to-day challenges in others lives.
And yet, those who’ve had the most difficult challenges are those who can teach a thing or two about gratitude. One of our Behind the Wall parents tells us that beginning November every year, she becomes more vigilant than she is normally (which is more than most), watching for signs that her son is stressed, or beginning a cycle of psychosis. She fears his psychosis could lead again to jail and weeks of horrific treatment. This fear is justified. When her son is well and safe, she is truly grateful. I believe her because she understands life’s difficulties.
Another Behind the Wall parent, Esme, has a daughter whose illness is the underlying cause for dangerous behaviors that among other events, lead to a near-lethal cutting incident and an overdose. Esme says the experience with her daughter has given her great empathy. For which she is grateful. She doesn’t expect those who don’t have mental illness in their family to understand, and says, “Good for them they don’t understand.” Though, it would be great if our society could learn to accept those who live with mental illness, Esme rightly focuses on how lucky she is that her daughter is kind and loving.
Then there’s Behind the Wall’s Bianca, who reminds us to find the moment of “normal” in all the chaos of parenting an adult child with persistent mental illness. Even if it’s a small moment. Maybe it’s thirty-minutes she and her son share making dinner. Maybe it’s laughing at a joke. You can find the moment of normal if you try, she says.
What these generous, inspiring parents express is the true meaning of gratitude. For these parents, gratitude comes from accepting that life is not a string of good moments with a few hiccups along the way. To paraphrase my dear friend, a practicing Buddhist, life is struggle, work, and hope, with wondrous glimmers of grace (I loathe to use the vaguely defined term, “happiness”). There’s no question that some are born with more talent, or into families with more resources. We can feel grateful that some of these gifted folks do help others, and feel empathy for those who choose not to do so, for their lives are not rich in what life has to offer. Maybe what defines a lucky or blessed person is one’s ability to appreciate that precise moment when good does comes along, to recognize the appearance of grace. No matter one’s circumstances, perhaps the greatest gift of all is the ability to see and experience genuine gratitude.
‘Tis the season to see grace and find gratitude, even if within the smallest moment.
Happy Thanksgiving to our readers. We are genuinely grateful for your support.
As always, your comments are welcome:
I just say, ‘he has schizophrenia.’You know, it is what it is!
Throughout the process of creating our collection of stories for our Behind the Wall project, most parents we interviewed had already passed through the hurdle of acceptance, or as one very astute parent clarified, she’d reached “radical acceptance”. (See post entitled, “Radical Acceptance” dated June 26, 2013.) Most of the parents we interviewed were living in the fluid state of “What do we do now?” And in the same way a yogi practices yoga, rather than ever fully mastering it, these parents practice the daily inhale/exhale of living with grief while also caring for one’s own well being. We’ve said it many times before: these parents are inspiring.
During one interview, however, a parent described her child’s illness without offering to share the psychiatrist’s diagnosis, insisting instead, “We don’t use labels.”
The stigma attached to serious mental illness is detrimental to those diagnosed and their loved ones. “We don’t use labels” means, “We won’t really say what the illness is because I don’t think my child can handle knowing it and neither can I. I don’t want others treating her differently.” This way of thinking is not uncommon when parents first learn their child’s diagnosis.
A diagnosis of a serious mental illness such as bipolar, schizoaffective disorder, schizophrenia, or serious depression, often comes after challenging chaos and endangering incidents. Frequently, the most accurate diagnosis is preceded by several near misses. Settling on a correct diagnosis can be a complicated process. So when a parent hears, “Serious mental illness,” it makes sense to wonder, “Is that really it? Are we jumping to conclusions?”
These are sentiments many Behind the Wall parents harbored while moving toward acceptance. After her son was diagnosed, Bianca would sometimes think, “Schizophrenia? Maybe he’s just having a bad day. Maybe he just smoked too much weed.” Or, she’d say, “Maybe it’s bipolar. Because bipolar is more socially acceptable than schizophrenia!” All the while, she knew her son was very ill.
But not addressing the illness directly inhibits acceptance by loved ones, the caregiver, and most critically the ill person. An individual living with serious mental illness simply cannot reach recovery without accepting the diagnosis and treatment required to effectively manage the illness. Maybe a parent refuses to “label” because she doesn’t want her child to believe he is flawed or less of a person. One may fear the child will use the diagnosis as a crutch or excuse. A parent doesn’t want her child to be treated “differently.”
Life is more difficult with any untreated illness.
Here’s something to consider: a person living with untreated mental illness already knows she is different in some way. Life is more difficult with any untreated illness. And those who are in recovery almost always recognize the importance of owning their illness and calling it what it is: a challenging, incurable condition that was not caused as consequence of their own doing.
And while society and the media are still slow to come around to speaking accurately about mental illness, when a person’s immediate community accepts the illness without confluence of inferiority, so will the diagnosed individual. When loved ones rally to support a lifestyle conducive to managing the illness, that is, treats him (differently) with perhaps more compassion and understanding, his life gets better the same way a person managing diabetes must be supported in his lifestyle requirements.
Decades ago, our mother reminded us, that a person would never announce his cancer diagnosis, likely because it was a death sentence. Also, it was terribly impolite. But today there are good treatments and website pages where a person announces his illness, his stage of recovery, and welcomes supportive posts from loved ones. Even money for healthcare is accepted. As it should be.
Today, serious mental illnesses can be managed too. There are set backs. But those who have the best chance for recovery are those who own the illness, accept the diagnosis and treatment. As it should be.
Let’s talk about mental illness in a real way. There is hope. It’s a serious illness that needs proper due.
Your comments are welome.
Post by guest blogger, Alice Tanner.
We are honored to present a post by guest blogger, Alice Tanner, Addiction Recovery Consultant and Intervention Specialist, founder of Bay Area Intervention. Because more than 60% of individuals diagnosed with a serious mental illness are dual diagnosed with substance use, we know this is a critically important topic for discussion.
Ever heard the saying, “The family that plays together stays together?” Well, here’s a twist: “The family that recovers together discovers together!”
As a “family” disease, no longer do clinicians and mental health practitioners believe that “the problem” lies solely with the person who lives with addiction and, or substance use. Today, we know the disease of addiction has an equally strong and destructive counterpart, co-dependency, which is the role families and loved ones play. We now understand that those closest to the person diagnosed with substance use have also unwittingly become unwell in the downward progression of addiction. The maladapted coping tools developed to deal with the behaviors and attitudes of the addiction don’t work. An example of a weak coping tool is when a family member tries to control substance use by getting rid of the chemical, or by nagging, threatening, or pleading for the using to stop. These tactics may work for a while, but soon substance use resumes, often more hidden and escalated. Over time these ineffective and unhealthy coping skills become entrenched. When a family finally seeks professional help, usually through intervention, they begin to learn that addiction is not just Joe or Jane’s problem, that it is a family disease and that recovery must involve the whole family.
Recovery from addiction takes a lot of time and effort. It requires total transformation, changing from the inside out. This transformation is not intuitive, easy, or passive. We are quick to understand the need and desirability for a person who abuses substances to change, however, not so quick to understand or believe the need for the family to change. The source of the constant codependent pull is the belief that, “If John stops drinking and creating all this trouble, I won’t have to be so ______________________ (controlling, watchful, financially helpful, etc). The myth is that if the substance user gets well, the family and friends can get back to a “normal” life because the bad behavior and resulting consequences will stop. Nice idea, but it’s not the way it works. Truth is, without family recovery the codependent coping behaviors continue; they just manifest differently.
Families, blind to their own need for recovery, are content to let their addicted loved one do the recovery “thing” while they get back to “business as usual.”
Families are often challenged to understand that recovery is a family affair. Just as it was once incomprehensible that life could ever get as bad as it did for an addicted loved one, or that family life would be disrupted by the chaos of addiction, families frequently do not quite believe they need their own recovery. They must come to accept the necessity for systemic change in the same painful way they accepted a loved one’s addictions. Families, blind to their own need for recovery, are content to let their addicted loved one do the recovery “thing” while they get back to “business as usual.” At best, this path is a detriment to solid recovery and, at worst, a derailment to it.
How families engage their own recovery is not an easy or simple question to answer or navigate. In general, families successfully do so by addressing unhealthy attitudes and behaviors that were cultivated in order to cope with the addiction that was taking over their family. For example, families learn to stop cushioning the consequences of their loved ones drinking and drugging. Family members willing to learn about addiction and co-dependency can begin the recovery process. When loved ones implement coping tools and behaviors just as their addicted loved one does, it creates supportive relationships in a difficult, but necessary, transitional time. Over time, the whole family changes and grows. The family enters recovery together. And, they all come to understand that recovery is not a spectator sport for the addict . . . or the family!
What does the family that recovers together discover? Hey, go for it and let us know!
More information about Alice Tanner and Addiction Recovery services can be found at: http://www.bayarea-intervention.com.
As always, your comments are valued.
The dangers of “coddling” a child who lives with serious mental illness. Five ways to be supportive instead.Posted: July 31, 2014
My biggest mistake was trying to fix everything for him. He never learned how to do it on his own.
This is what a mother of an adult son who lives with serious anxiety and depression now says. From an early age, Jonathan* seemed more sensitive than other kids. During adolescent and teen years he showed symptoms of anxiety and depression. His mother tried to resolve issues for him because mothers want to make things better. But in doing so, she’d give him the solution rather than allow him to make his own way through problems. She did the heavy lifting to get him out of his darkness. She’d say, “Let’s go for a walk.” Or, “How about I take you somewhere.” “Maybe we should watch a movie.” In other cases, she’d shield him from potentially difficult situations. She tried to rescue him. “That was my mistake,” she now admits.
… finding the fine line between being protective and supportive versus coddling for an overly sensitive or atypical child can be shifty.
Protecting a child from physical harm and nurturing through difficult emotional benchmarks are givens in a mother’s job description. But finding the fine line between being protective and supportive versus coddling for an overly sensitive or atypical child can be shifty. Parents we interviewed for Behind the Wall described atypical children who almost always had real limitations in social and school settings caused by anxiety or over-sensitivity. Sadly, it is not uncommon for a spouse or the child’s other parent to disagree about where the line of competency exists, creating friction in the home and between family members resentful of “special treatment”. Disagreement between parents about a child’s competency can have devastating consequences. Expectations that are too high can be overwhelming and unduly stressful. Low expectations send the message that parents lack confidence in their child. An awareness that parents are disputing one’s competence can also create guilt and self-esteem issues.
Madeline Levine, psychologist and author of The Price of Privilege and Teach Your Children Well advises, “Never do for a child what he can do for himself”. This includes navigating on one’s own through difficult emotional territory with support from parents. A parents’ job is to prepare a child to live successfully in the world. Experience is truly the best teacher, and parents are uniquely qualified to provide such opportunities for trying new physical, mental, and emotional challenges. Coddling, by definition, prevents experience and important failures from which one learns. Being supportive means presenting a child with choices and allowing him to gracefully fail and succeed at his own pace along the path he chooses.
For a person who lives with mental illness, though, the line of competency can shift day-to-day, sometimes hour-to-hour depending on the person’s current state of recovery. Sometimes, that line moves backwards.
Here are ways our Behind the Wall parents show support and avoid coddling:
Be honest. Being honest with a loved one about her mental illness and her current state of recovery is the crucial first step toward her recovery. Being well informed by credible sources about the diagnosis and seeking evidence based treatments are necessary for recovery. Ultimately, a person cannot reach recovery without moving toward it on his own volition, which may require professional motivational help. Managing an illness successfully requires knowing facts. Shielding facts in an effort to protect another from the stigma of mental illness only serves to obfuscate the path to recovery.
Give your child responsibilities. Everyone needs responsibilities. Having a goal each day fosters success over time, even if on some days the goal cannot be reached. As one Behind the Wall parent says, even though her son was not yet able to live on his own, he wasn’t broken; he could still clean his dishes. It just may take a little longer for him to remember to do it. As Dan says of expectations for his daughter who lives with schizophrenia, she is responsible for living the best way she can. All of us owe ourselves the self-respect to work every day toward learning better management of one’s own health; for a person living with mental illness it is certainly more challenging than most and often means taking medications and recognizing when treatments are not working. A person may do better one day than others, and may even fail, but everyone has the responsibility to try again. And loved ones must provide support everyday without judgment or criticism.
Teach strategies rather than provide solutions. Keep an ongoing dialogue. A person living with a brain disorder may not always be capable of rational or logical thinking. Sometimes, a person may believe that loved ones or even non-existent people are trying to inflict harm. There is no amount of rational talking that can convince a person who is experiencing psychosis otherwise.
But that doesn’t mean a parent or trusted loved one shouldn’t keep trying to show—by asking questions, for example—how to logically work through paranoid or disjointed reasoning. When her son is experiencing psychosis, Bianca points out behaviors and symptoms that indicate irrational thinking, and helps him to see he is not well. When doing well, she describes the behaviors that reflect failing mental health. She will tell him, “When you were in the shower for six hours, that was not healthy.” She will ask him, “When you’re not doing well, what are some things you can do?” A constant dialogue about recognizing symptoms of one’s worsening illness may be helpful to a person who is in the long and difficult process of learning to manage his own illness. Bianca encourages her son to take a daily inventory of symptoms and think about what has worked for him in the past and what he can do in the future. More than once, Bianca’s son checked himself into the hospital.
Provide an escape plan for potentially stressful situations instead of not trying at all. Along the lines of teaching strategies, avoiding any situations that may have potential for stress can limit an individual’s engagement with community and chances to develop new skills. But stressful situations without an escape strategy can have devastating consequences for a person living with mental illness. Sometimes, social events are unavoidable, or an individual desires to try a new experience. Discussing an escape plan in advance empowers an individual with agency to determine when a situation becomes overwhelming and to act upon it. Planning ahead develops problem-solving skills for managing the ever-changing limitations of one’s mental illness. Behind the Wall father, Dan, encouraged his daughter to pursue a demanding education while emphasizing the always-available option to drop a class should she begin to feel overwhelmed. Bianca, a Behind the Wall mother whose son lives with schizophrenia, prepared her son in advance of attending a wedding. If the crowd became too much for him, she explained, it was acceptable for him to go outside and take a walk or go home. Now, when they go out to dinner, he gets up and goes outside if he needs the escape and nobody is concerned, critical, or judgmental.
Failures are memorable lessons, and with support from a team, a failure can be a safe learning experience.
Welcome failures as opportunities to learn and never be judgmental. Perhaps the most difficult guideline to follow when parenting any child, but especially one who lives with persistent mental illness, is allowing for failure. A person with brain disorders frequently faces situations in which “failing” may pose lethal risk. Failure to manage one’s illness can lead to a psychotic episode, possibly resulting in self-harm or victimization. Assertive Community Treatment (ACT), an evidence-based treatment, provides people with mental illness a safe environment to try new life skills. Failures are memorable lessons, and with support from a team, a failure can be a safe learning experience. One example of ACT service is “supported employment” in which a person’s employer and case manager work in cooperation to increase the employee’s success. The case manager facilitates understanding between employer and employee, assists in working through obstacles and potential job challenges such as communication problems, stressful hours, or short-term memory deficits common for individuals with brain disorders. ACT provides similar support for college students managing communications with instructors and stressful course loads, for example. By providing well-trained advocates to teach and reinforce practical life skills and strategies, ACT decreases day-to-day logistical load for families who are hesitant to allow an adult child to fail.
By the time Jonathan, whose mother admitted she had not allowed her son to fail, reached his early twenties, an age by which he could have begun to understand how to manage his illness, he continued to experience increasingly severe and unmanaged anxiety and depression. He was not progressing in life as he thought he should. He sought help from an uninformed practitioner who did not offer talk therapy but prescribed marijuana** for severe anxiety, which over time, compounded his issues. Though one of Jonathan’s parents is a physician, he refused to listen to advice from either of them. Fortunately, Jonathan finally recognized his anxiety and depression was debilitating and he had not acquired effective tools to manage his illness. He agreed to seek treatment from a doctor recommended by his parents and his life has been improving.
*Names and identities are changed to protect anonymity of the (usually adult) children of Behind the Wall parents
**Studies show that marijuana use is “…potentially dangerous for people with mental illness.”
From National Alliance on Mental Illness web site (www.nami.org):
The overwhelming consensus from mental health professionals is that marijuana is not helpful—and potentially dangerous—for people with mental illness. Using marijuana can directly worsen symptoms of anxiety, depression or schizophrenia through its actions on the brain. People who smoke marijuana are also less likely to actively participate in their treatment—missing more appointments and having more difficulty with medication-adherence—than people who abstain from using this drug.
The relationship between marijuana and psychotic illness, specifically schizophrenia, has been studied for many years and is receiving increasing publicity in the mainstream media. Certainly not all people who smoke marijuana will develop schizophrenia, but people who are at risk of developing this illness—including individuals with close family relatives that have severe mental illness—will be more likely to experience psychosis if they are using marijuana. In this population of individuals, people who regularly smoke marijuana are diagnosed with schizophrenia at a younger age, hospitalized more frequently for their illness and are less likely to experience complete recovery even with high quality treatment. This is particularly concerning, as approximately one-third of people in America with schizophrenia regularly abuse marijuana.
From the Royal College of Psychiatrists website (www.rc.ac.uk):
There is growing evidence that people with serious mental illness, including depression and psychosis, are more likely to use cannabis or have used it for long periods of time in the past. Regular use of the drug has appeared to double the risk of developing a psychotic episode or long-term schizophrenia. However, does cannabis cause depression and schizophrenia or do people with these disorders use it as a medication?
Over the past few years, research has strongly suggested that there is a clear link between early cannabis use and later mental health problems in those with a genetic vulnerability – and that there is a particular issue with the use of cannabis by adolescents.
The stories are heartbreaking. And they must be told.
Parents want to help a child or loved one who is ill. This is a given. Expected. And yet, in helping a person who has serious mental illness, there is an obstacle at every turn. As one of our Behind the Wall parents says about advocating for her son, “I wasn’t out to harm him, but because of all the laws, I wasn’t allowed to help him.” Most innervating are the restrictive laws—different in each state—for obtaining involuntary commitment for psychiatric treatment for patients over eighteen.
We ask the question: what is the ethical treatment of people who don’t know they have mental illness?
The heartbreaking story in the Washington Post on June 28th “Behind the yellow door, a man’s mental illness worsens, by Stephanie McCrummen” is the story of many families—about eighteen million in the US. It illustrates the common journey and we recommend you give it a read. Pass it around. Then talk to your US and State Representatives about restructuring more humane laws.
Here is the link again:
We welcome comments.
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
Recently a friend introduced me to his friend by saying to me, “You have to tell him what you’re writing.” People don’t always want to talk about what I’m writing. Because talking about mental illness at parties can kill the mood. Makes a person run for more coleslaw. And if mental illness is not in your family, it doesn’t affect you, right?
Mental illness really does affect a whole family. The man I met, let’s call him Justin, has a son who lives with serious and sometimes debilitating anxiety. As Justin and I talked, his friend, who was sitting beside him, nodded his head and seemed to know the whole story. He’s a good friend. Justin went on to describe his son’s challenges and that one of the most heartbreaking aspects of the illness is the way his son’s siblings, one of whom had been quite close, have distanced themselves from their brother. Justin’s son was getting healthier and learning to better manage the illness, but his siblings blamed him for his behaviors and thought he could control himself. They’d say he was “lazy” because he wasn’t always as functional as they thought he should be. They are angry with him and stay away from him. Imagine how Justin and his son must feel; more worrisome is that the one thing a person learning to manage mental illness really needs is support from loved ones.
But sadly, those who have a loved one living with mental illness—and who share living quarters—know that sometimes distance is required for their own survival.
It’s not fun hanging out with someone who starts talking nonsensically or is easily and unpredictably triggered to act out with extreme anger.
That’s what mental illness does to families. It’s disruptive. It changes relationship dynamics. When the illness becomes symptomatic, a sibling who may have once shared a close relationship with the ill person often grieves along with the parent, at the (temporary or permanent) loss of their loved one’s talents and abilities. There is also anger because their sibling may have a thought disorder and cannot control behaviors. It’s not fun hanging out with someone who starts talking nonsensically or is easily and unpredictably triggered to act out with extreme anger. Some family members also feel betrayal because the ill person in the house sucks all the attention and exhausts everyone.
This churning mix of chaos, grief, and anger swirling in Justin’s house is similar to what many families of returning veterans experience. In 2002/2003 an estimated 1.4 million male and female veterans were identified as living with serious mental illness. Approximately 365,000 of these individuals had co-occurring substance abuse disorders. These numbers have undoubtedly grown significantly in the ten war-years since the collection of this data. That’s a lot of families struggling to learn how to cope with grief and chaos while also supporting the recovery of their veteran-loved one.
Only many years after our Vietnam veterans returned were they given their due respect and many still don’t feel fully appreciated. But since that belated and collective mea culpa, we’ve all talked a lot about supporting our brave men and women who serve our country. We are only recently talking honestly about the serious brain injuries, mental illness, and substance use that our veterans come home burdened with as collateral damage from their service. And yet, it’s these injuries and illnesses that likely contribute to the appallingly high homeless rate amongst veterans (33% of all homeless males are veterans).
That there are more than 1.4 million military families in our society grieving, coping, and supporting a family member who lives with mental illness should rightly elevate the importance and awareness of mental health for us all. Not just those who have a loved one with mental illness, and not just military families, but all of us. Because with that many affected families, it becomes society’s issue. With numbers this high, failing to address mental health with genuine intent is a repeat of the dishonor our service men and women experienced returning from Vietnam. They performed their duties as asked and we didn’t give them their due.
It may not be a fun topic for the next neighborhood barbeque, but it’s certainly a subject to address with congressional leaders and in meaningful political discourse. On this Memorial Day, we can put all that talk about honor into real action and support military families by pushing for better mental health care and supporting the families who support the returning veteran.
So yeah, it does affect you. And me. And the more than 1.4 million families across the country who are trying to make sense of it all.
 National Alliance on Mental Illness (NAMI) provides statistics, information, and resources, and support for those seeking help in managing one’s own mental illness or that of a loved one.
 Source: http://www.veteransinc.org/about-us/statistics
Your comments are welcome:
Recently our family attended an art show of two women painters, Ellen Litwiller and Angelique Benicio. Calling them “women painters” as opposed to simply, “painters” can elicit a whole conversation about noting that their gender makes them somehow different. Because do we ever say “men painters”?
It’s curious that when we think of a man who is successful we don’t usually say, “And he’s a father!” But regarding a successful woman, we say, “And she’s a mother!” A prolific male painter who is also a devoted father is remarkable. A woman painter, who is a devoted mother, is praised for the fact she does paint. We tend to see motherhood as “natural” and a woman who awkwardly holds a newborn to be odd. Either we underestimate men as fathers or overestimate women’s aptitude and inclination for parenting. Here we risk sweeping generalizations. When a family breaks apart, it is statistically more unusual for a mother to leave her children to be cared for full-time by their father than the other way around. But thankfully, our ideas about these roles are slowly changing.
They do not include the descriptor “women” to identify their work as being lesser or better than that of other painters, but it does, intentionally or not, highlight the complexity involved in their career arc.
But I call attention to these differences because the fact that these painters are women has dictated their journey. Litwiller and Benicio, who are part of a women painter collective, are working in collaboration to garner exposure. They do not include the descriptor “women” to identify their work as being lesser or better than that of other painters, but it does, intentionally or not, highlight the complexity involved in their career arc. They are, in fact, wildly talented and disciplined painters. They are special, though, because they are also mothers. And devoted ones, at that.
In order for them to find the block of hours for their work, they first created space in a garage, cordoned off from their children. This space is also sometimes metaphoric. Ellen tells me she created a sculpture from yarn while also watching her sons at the skate park. Hey, everybody in the family has needs and when there’s a will, Ellen finds the way. But family life is always the constant and not necessarily predictable or controlled. It is no small feat to organize the schedules of two adolescent boys, grocery shop, and be present to acknowledge successes and manage meltdowns. And then, in the limited time that is the school day, she pulls from somewhere deep within to create something else. But their work is also what saves them from the pressures of family life. The act of creating can be highly therapeutic.
Where the story of these two women painters connects to the rest of us is that their lives exemplify the creativity and discipline involved for all women to transcend motherhood in small and grand ways. As if motherhood is not a large enough role. But a woman’s life is an integration of identities—mother, wife, professional. And then when life at home becomes more challenging because a child has become ill, for example, a mother must rise to meet that challenge also. Some of us are fortunate to have support of a spouse, sibling or dear friend. But what mother, no matter how well supported, doesn’t feel the constant emotional and practical pull to meet the needs of our kids, maybe a partner, and of our own ambitions?
Motherhood presents an ever-changing landscape. Just when a mother feels she’s got this thing down, it changes. When our children are very young, the needs require physical stamina. Later, mothering becomes increasingly more psychological, at times heartbreaking, as we witness our children suffer what life delivers. If the lack of sleep in those early years don’t get us, the anguish of teenage rebellion just might.
There are many mothers who never get the chance to fully explore their ambitions. Sometimes, their child’s needs are too great to allow much more personal exploration. Or, maybe a mother isn’t supported. Some women quietly find fulfillment or success in less public ways. Knowing that motherhood presents complexity, how can anyone judge a woman’s choices in parenting? One of our Behind The Wall mothers whose daughter lives with borderline personality disorder once said, “I know others judge my parenting because of my daughter’s behaviors.” But to those who are doing the judging, one should ask, “Do you even know what’s going on behind the walls of that home?” Mothers are humans who are figuring it all out as best they can. And when we have our own successes, it is downright remarkable. It is.
This post is our first that is not centered on addressing mental illness. But it is about mothers, who are often the primary advocates for a child who lives with any chronic illness. For this Mother’s Day, perhaps we should contemplate what one can do to support other mothers in their journey to integrate their many identities and to bend to meet the needs of those they love. One way is to respect the hard choices she has to make to meet the needs of her children and herself. And another is to celebrate the brilliant accomplishments of other mothers we know.
Thank you, Ellen and Angelique.
To learn more and view the portfolios of Ellen Litwiller and Angelique Benicio, please go to:
As always, your comments are welcome:
Eight great bits of advice for parents whose children are diagnosed with serious mental illness from those who have been there: Behind The Wall Parents.Posted: April 8, 2014
As many followers of this blog, Facebook, and Twitter may know, we are doing some final edits for our book, Behind The Wall: The True Story of Mental Illness as Told by Parents, which we anticipate being available this fall. In the meantime, we thought we’d leak a little insight from our book in the form of these eight bits of great parenting advice.
The parents we were privileged to meet and bring to our readers have provided inspiration for their stamina and the wisdom they have gained through the journey of parenting and advocating for their child. Their advice is insightful, informed, and realistic. Some are applicable to parenting any child. We have summarized below what we feel are some of the most important bits of advice from this and previous chapters for a parent whose child is recently diagnosed with a serious mental illness.
- Be honest with yourself and your child. As many parents tell us, even when signs are apparent, it is difficult to accept a mental illness diagnosis. But delays in accepting any diagnosis can translate into missing the opportunity to begin treatment at early onset, which can possibly stem more serious effects of an illness that is not kept in check. Learning to manage mental illness requires a steep learning curve for the advocate and ill person, who will not reach recovery without fully embracing his own diagnosis. As Tessa, one of our contributors, says, “Once I accepted it, then his world got better.” A parent or trusted advocate must serve as role model, be honest with oneself, and accept the diagnosis because a person who does manage their mental illness can have a fulfilling, meaningful life.
- Trust your gut. Dan, a father who generously came forward, talks about the importance of listening to advice from professionals but that parents usually know their child best. In one incident, when his daughter feels unwell, he knows that sitting in a “padded room” was less beneficial to her health than coming home for the weekend to rest and be with family. Tessa knew that her son’s anger was more than what a therapist labeled as just teenage angst and she regrets not pursuing a second opinion. It is true that there are times when it is easier to be in denial. Arguably, denial is sometimes a survival tool. Parenting requires developing skills for knowing what cues are important to notice and what are symptoms of a passing phase, and for listening to one’s gut and not being afraid of the truth. It sometimes seems these skills take a life to perfect.
- Don’t be ashamed about a mental illness diagnosis. One may not want to go around talking about their loved one’s illness, as is the case with any illness, but another mother / contributor, Bianca, says to those who ask, “‘My son has schizophrenia.’ You know, you guys deal with it. I’m not going to hide it. That’s what it is.” It may be helpful to remember that mental illness is treatable, non-communicable, and diagnosed in one in four people globally. Feeling shame is not useful for reaching recovery.
- Be informed. Seeking out information about a diagnosis from one’s doctors as well as through books, trusted web sites, and support organizations can help parents cope and better manage a child’s illness. Staying current on credible research can improve an advocate’s understanding and acceptance of what a loved one is experiencing. We provide a list for suggested reading in our book.
- Allow time and space for grieving. In many cases, symptoms of mental illness manifests in behaviors that are strikingly different or exaggerated while positive qualities loved ones associated with the ill person become obfuscated, sometimes never to fully return. Mental illness affects thought processes and intellectual abilities temporarily or permanently. Parents grieve the loss of the person they once knew, the abilities and potential they once possessed. A person with mental illness feels this loss as well. Relationships between siblings are impacted. Relationships with those outside the family are affected. The whole family is impacted by a loved one’s mental illness. Moving through such instability requires time and strength to grieve parts of the relationship that are lost in order to build something new. It is important to remember that grief manifests uniquely for each individual.
- Find a method for coping that best fits you and your family. As Tessa points out, just as treatment for mental illness is unique to each individual, so too are methods for coping. For parents whose child has been recently diagnosed, group therapy may feel overwhelming. But when a parent is ready, many find that support groups and classes such as the Family–to–Family course offered by NAMI, provide support and information. Many parents lean heavily on their faith. Meditation, pets, and regular exercise are all activities in which many engage in order to cope with the stress and grief of having a loved one who lives with chronic mental illness. Parents, Dan and Rebecca, emphasize the importance of doing fun activities with one’s child, whether that means snowboarding or crocheting, it means finding an activity both parent and child can enjoy together where the illness is not central. Keeping the illness from being at the center of family life sends a message to the whole family that there is hope for mental health recovery and removes undue pressure for the diagnosed individual. And finally, as Bianca advises, having a sense of humor and finding “those normal moments” is helpful.
Individuals must accept their own illness and take responsibility for managing it, and this includes identifying a trusted advocate in a parent or loved one who can be depended upon during a crisis.
- Don’t blame yourself. It’s not about you. At some point the ill person has to own their illness. Parents whose adult children live with persistent mental illness understand that they possess only so much control. Individuals must accept their own illness and take responsibility for managing it, and this includes identifying a trusted advocate in a parent or loved one who can be depended upon during a crisis. A caregiver or advocate, which is often the parent, can find resources and encourage treatment compliance. But a person with mental illness must be willing to trust an advocate, stay compliant, and ask for help when necessary.
- Stay connected. Always. Maintaining a trusting connected relationship with a loved one who lives with a persistent mental illness can make a profound difference toward achieving recovery. But as Rebecca points out, it can be difficult to feel close to one’s own child when they are saying terrible things such as, “You are not my real mother,” or, “There’s a chip in my head.” But our Behind The Wall parents remind us that these behaviors are the illness, not the child and another mother, Esme, says, parents should understand these tirades are not about the parent. Behind The Wall parents express to their child that, “We love you even if we dislike your (recent) behavior.” Esme points out that being non-judgmental, honest and open to dialogue engenders trust. Parents can stay connected by showing support, listening, advocating for treatment, but also by setting boundaries that keep both child and parent safe. Tessa has a proven history of advocating for her son. When he becomes psychotic and wanders homeless, she continues to reach out to him, texting him to tell him that when he is ready to come home, she will help him. She will not judge him.