Science That Offers Hope And Makes Us Cringe: The Love-Hate Relationship with Drug Therapy

Antipsychotics

At the last annual National Alliance on Mental Illness (NAMI) conference a controversial speaker, Robert Whitaker, was invited to talk about psychiatric drug use in treating serious mental illness (SMI). Mr. Whitaker is not a doctor but has won journalistic awards primarily in the areas of medicine, science, and history. He receives a lot of traction when he advocates treating mental illness without medication and cites studies to back up his claims.

His NAMI lecture focused on dangers of current drug protocols and methodologies that are standard in psychiatric care. Among other disturbing ideas, he cited studies indicating brain shrinkage from long-term psychiatric drug use, and that patients who never start on drug therapies have a better long-term outcome than those on medications. Mr. Whitaker advocates “selective use” of psychiatric drugs, and a reevaluation of drug treatment efficacy for children, claiming a link between drugs used to treat ADHD and a higher rate of pediatric bipolar disorder.

In the audience that day was a twenty-two year old man diagnosed with schizophrenia. That same day, the young man quit his medications. Cold turkey. His mother wrote to journalist Pete Earley, a mental health advocate, author, and father of a son living with schizophrenia, who then posted her email on his blog (http://www.peteearley.com). “Angry Mom,” as empty-red-seatsshe named herself, blames NAMI and Mr. Whitaker if anything happens to her son because she knows how sick her son is and that nothing good happens when he’s off his meds. There will be “blood on their hands,” she says.

Hearing Mr. Whitaker question drug therapy makes most of us who have a loved one living with a serious mental illness (SMI) cringe. I mean a full-body Cringe. Not because we love drug companies or are close-minded. In fact, much of what he says makes a certain amount of sense and could be helpful toward treating SMI patients in the future. But saying it out loud is lethally dangerous.

I’m guessing Mr. Whitaker doesn’t live with a person diagnosed with SMI. If he did, he’d know patients living with bipolar, schizophrenia, and schizoaffective disorder typically have concrete or rigid thinking, a symptom of which is the constant obsessing over an idea, and an inability to think abstractly or fluidly. So, when a twenty-two year old man with a schizophrenic brain heard “drugs have serious side-effects” and “patients do better without…” that is all he heard, not the more nuanced message that included, according to Mr. Whitaker’s response to “Angry Mother,” that, ”[Drugs] could be used to help some patients recover from an initial episode, and they could be continually prescribed to those patients who can’t seem to do well off them.”

“Angry Mom” knows a lot about her son’s condition and if she says he needs medication, I’d believe her. Nothing like a stranger coming in and introducing an idea that undoes all the work she’s put into getting him to stay on meds, and not just to be functional, but alive.

One parent /contributor to Behind The Wall: The True Story of Mental Illness as Told by Parents claims she will never again question her son’s doctors about his meds in his presence. By merely asking his doctor, “Can’t he get off some of these?” her son, not seeing that she was exploring the idea, went off all of them, cold turkey. Weeks later, he became psychotic, landed in jail, and often couldn’t recognize her. She blames herself for questioning the drug cocktail in front of him. Another contributor put it this way: the drugs are awful and why wouldn’t a person want any chance to go off of them?

No one can dispute that side effects of psychiatric drugs are horrible: excessive weight gain, tremors, loss of appetite. One contributor to Behind The Wall said her son went (temporarily) blind from one drug. Another put him at risk for a heart attack. Another drug doctors continually recommend could kill him. It often takes several weeks to get a drug cocktail correct, then that too can change. But there’s a trade off. Catherine’s son, Philip, was diagnosed with schizoaffective disorder. But Philip’s father didn’t support drug treatment and his psychosis persisted on less effective medication. Eventually, while alone, and not monitored to ensure he took his medications, Philip committed suicide at age nineteen. Drug therapy would have prevented these devastating outcomes.

Mr. Whitaker’s drug-reduction advocacy is not meant to harm. Any parent would insist on reducing the drug load for their child living with SMI if they could stay well without them. And we won’t discuss medicating pediatrics here, except to say, it’s never an easy decision.

But some of Mr. Whitaker’s claims ignore other studies that provide at least partial explanation, for example, as to why recovery rates for SMI are reportedly higher in some third world countries. Countering his suggestion that the cause for lower recovery rates is because of over prescribing, we can look Tanya Marie Luhrmann’s essay, Beyond the Brain, from last year’s The Wilson Quarterly* cited in our post, “Society’s Way or Best Way,” regarding societal structure and community impact on MI.** Stress and isolation play a big part. Mr. Whitaker also cites a study showing mentally ill patients who are not on drug therapies do better in the long run. There are many SMI patients who, without medication put themselves in grave danger. If a patient isn’t so psychotic or manic that they can stay safe without medication, then yes, one can see they will be the ones who do better in the long run. That is NOT the kind of patient Mr. Whitaker means to be speaking about.

But that’s not what that twenty-two year old heard.

Mr. Whitaker’s focus is on shifting drug protocols, and uses science to back it up. But even he admits that the current health system (and our society) is not structured for long-term minimal drug therapies. In his response to Angry Mother, Mr. Whitaker seems to acknowledge risks in his advocacy when he says, “We, as a society, have not developed a system of care that provides support to someone who might want to taper from his medications, and help that person try to do so in a safe manner, even though we know that it can lead to a good outcome for many. And the absence of such support may put a person—such as this mother’s adult son—into a perilous place when they do, in fact, learn of such information.”

If our society could develop deeper compassion for people living with brain illnesses, reduce stress caused by our societal structure, and put our loved ones who live with SMI in a safe environment for a year or two— time for their brain to cool, maybe we could begin to have this ideal treatment methodology Mr. Whitaker proposes. Mr. Whitaker offers a hope for a tolerable treatment for SMI that we, a supposedly humane society should strive to realize. What Mr. Whitaker never offers, is an apology. Because he’s giving out an idea that many SMI patients simply cannot have. At least not now.

But that is not what that twenty-two year old heard.

Research and evolving brain studies do offer hope for non-drug and selective drug therapies for SMI. And a broad range of seemingly worthy studies identifies the multiplicity of factors contributing to SMI and to recovery— factors that are varied, complicated, and unique to each individual. No one’s mental illness is like the other, nor is their recovery. And for parents trying to keep their adult child living with SMI healthy and alive, they want to stay with what’s working.

Complicated, varied, and irrational. That’s what mental illness is. Maybe we cringe because it all sounds too good to be true. No drugs? Please don’t tease us, Mr. Whitaker. Don’t even tell us until hope really is here.

 

* Tanya Marie Luhrmann’s essay, Beyond the Brain, from last year’s The Wilson Quarterly:  http://www.wilsonquarterly.com/article.cfm?aid=2196#.UOR7b8OB6j0

** https://behindthewallstories.wordpress.com/2013/07/04/societys-way-or-best-way

NAMI provides information and resources about treatment for mental illness: http://www.nami.org/template.cfm?section=About_Treatments_and_Supports

For further information about Robert Whitaker: http://www.robertwhitaker.org/robertwhitaker.org/Home.html

Huffington Post blog by Robert Whitaker that clarifies his perspective: http://www.huffingtonpost.com/robert-whitaker/anatomy-of-an-epidemic-co_b_555572.html

As always, we are interested in your thoughts.


Advice From The Most Heroic Parents We Know: Put Your Mask On First.

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This is what you do in an emergency: take care of your primary needs so you can help others who aren’t as capable. Put your oxygen mask on before helping your child. The concept seems contrary to what we know as parents. For many, parenting can be defined as a willingness to sacrifice everything to benefit your offspring.  Save the child first!

But rationally, how can you save your child if you’ve passed out?

Such is the advice from the most heroic parents I have ever encountered. These parents have children diagnosed with serious mental illness and provided the stories for our collection entitled, Behind The Wall: The True Story of Mental Illness as Told by Parents. The analogy to “save oneself first” gets much play, but hearing this advice from parents of high need children (nearing adulthood or young adults) who weather unpredictable events layers an authentic sheen to the concept. Their advice to take care of oneself so you can be present for your child is fundamental for all parents.

Parenting at its easiest is still a marathon not a sprint. A high-need child is like adding twelve miles of hills. The question becomes, “How does a parent take care of oneself when the child requires constant attention, and a crisis can erupt without notice at any time?”

Dan (no real names used), a father of a daughter who lives with schizophrenia, advises to avoid making your child’s needs (or illness) the sole focus of your life. Of course, when a child is in crisis and/or going through a complicated process toward finding effective treatment, a parent needs (and wants) to be all in. But when the crisis lifts, Dan enjoys a hobby, riding his motorcycle. Sometimes Dan must put aside his needs to address his daughter’s, but when possible, he’s riding. He insists his hobbies, in turn, benefit his daughter. Says Dan, “Because if the child starts feeling like everything is about them and what they’re going through and their problem, you end up with guilt and a sense of responsibility and that’s not positive.” If a parent doesn’t live his own life, it can send a message to their child that they are incompetent, that there is no hope, no expectation that they can function on their own. And they won’t. And this goes for all parent-child dynamics.

For parents of high-need children approaching adulthood, there are often difficult logistical decisions to be made, the result of which impacts the whole family. In our recent blog, Society’s Way or Best Way, we wrote about ignoring societal pressure to “launch” a child, or make him live on his own before he is ready. A person living with mental illness requires time for the brain to heal after a psychotic episode or while recovering from severe depression, for example. After publishing our post, one of our contributors astutely commented that there are times when having a person with mental illness live in your home is disruptive to family members—the marriage, other siblings—and in those cases group homes are a best option. Parents sometimes feel guilty about admitting that when their child is in a treatment facility—hospital or group home—that their own home is calm and other family members are happier. It may appear to outsiders that sending a family member “away” is cruel, or selfish. It is never an easy decision to send a child away though ometimes doing so best serves the family’s well being.

Aside from hobbies, other parents cited that getting away for a weekend when possible, yoga, or even going out with friends was rejuvenating. Dan’s wife, Rebecca, spends time with friends. Maika, whose son Riley lives with schizoaffective disorder, walks her dogs. Sometimes her son’s behaviors, like binge drinking or deciding to go off medication, make her furious so she screams into pillows. Our contributors often recommended seeking therapy to cope with a challenging parenting journey —simply having a person with whom they can talk without being judged.

Most all of our contributors suggested support groups through organizations such as AL-ANON (Alcoholics Anonymous, http://www.al-anon.org/) or NAMI (National Alliance on Mental Illness: http://www.nami.org/). NAMI reports studies that show sharing one’s story and hearing others tell of similar experiences helps one feel less isolated. Simply, knowing you are not alone with whatever challenges you face is psychologically beneficial. That is the magic of support groups, and perhaps that is why at the completion of nearly every one of our interviews contributors commented they felt better by sharing their whole story. We often heard, “Whew! That felt good,” to finally unload the long and courageous journey of parenting a child living with mental illness. The act of sharing, and, potentially helping others was healing. Meanwhile, there we sat, in awe.

Whatever your method, put your mask on first.

As always, we love to hear from our reader / followers.


Mental Illness and the Medical Industrial Complex: parent / advocates can be a doctor’s best resource and yet are often undervalued.

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Proper treatment—talk therapy and appropriate medication—can save the life of a person with mental illness. Often it is a parent/ advocate driving toward that ultimate goal, one met with a myriad of obstacles. Every parent interviewed for our Behind The Wall project had at least one, if not several, hideous experiences with the “medical industrial complex.” We use this term to illustrate the oftentimes bureaucratic, impractical, impersonal, demoralizing system for patients with mental illness and their families. Our last post, Just Another Friday Night in Lock-Down is the story of one parent’s emergency room experience with her son.

Most common problems parents cite were caused by a general “one-size-fits-all” approach and more specifically, doctors who did not value the medical histories and insight parent/advocates could provide, health insurance policies that limit care or end treatment prematurely, obscenely long wait times in emergency rooms, a dearth of available, quality in-patient treatment facilities, and medical professionals who are poorly trained or administered medications inappropriate for a particular individual. Perhaps the most galling of all are restrictions framed by HIPAA laws, which were designed to guard patient privacy but in reality, excludes caregivers from direct information interchange with medical professionals despite their unique and experienced knowledge of the patient.

An individual living with mental illness usually has a long history of trial and error therapies. Contributor/parents to the Behind The Wall story collection have learned to adhere to a few critical and practical methods in dealing with the medical industrial complex. First, they constantly remind their over-eighteen child to sign the HIPAA waiver when they are in treatment and ask for one if it is not offered in order to allow medical professionals to communicate with a designated adult. Unfortunately, a person experiencing psychosis doesn’t always have practical matters, such as paperwork, top of mind. Second, parents advise, keep medical records of all treatments well-organized and close at hand. Many parents joke about binders filled with medical paperwork lining their shelves, overwhelming their offices. Because of the complex nature of diagnosing mental illness, it is crucial that each medical professional involved understands past treatments and outcomes. While a patient in crisis may present common symptoms, the go-to treatment may be potentially dangerous to some individuals.

One such patient, Miguel, who was diagnosed with schizophrenia, has never been able to tolerate a typical therapeutic dosage of most go-to medications. Once he gained fifty pounds in a week. Another time he lost his vision at a nearly full dose. One medication put him at risk for cardiac arrest. Luckily his mother maintains excellent records and researches medication so that when a doctor prescribed Clozaril, a heavy-duty drug known to be potentially legal to a small percentage of individuals, she was able to convince the doctor to find an alternative even though his symptoms were severe. Since Miguel experiences side effects to some degree with every medication, she knew a hard-core drug would be especially risky for Miguel.

Kerri’s son, Thomas, was living in a group home that was not her first choice but was decided upon by her insurance. There was no psychiatrist on premises. Instead, a prescribing nurse met once a week with residents to assess drug treatments. While living in the group home, Thomas complained about depression. The nurse prescribed Prozac, a medication that in the past had made Thomas highly agitated. Kerri doggedly tracked down the nurse at her off-site office and informed her of the negative reactions her son experienced when prescribed any SSRI medications and luckily, together, they were able to find an alternative.

In these cases, a parent was closely monitoring their child’s treatment and a doctor listened. One can only imagine what happens when there is not an advocate overseeing treatment. Or, in Marie’s case (from last week’s post, Just Another Friday Night in Lock Down) when a doctor ignores a parent’s pleas not to administer a benzodiazepine to her addict son.

Dan and Rebecca also closely monitor their daughter, Stella, who was diagnosed with schizophrenia and lives a few hours away from where she attends university. Stella called her parents saying she wasn’t feeling quite right, to which her parents urged her to visit the university health center. Later, Dan and Rebecca received a call from the medical center stating that Stella would be checked into a hospital. “If you don’t do it,” the nurse said, “the university will.” Dan rushed to retrieve his daughter and drove her to an emergency room at a well-respected hospital close to their home. They were ushered into a room with, as Dan describes it, “soft furniture,” where they waited over ten hours and still did not see a psychiatrist. Dan realized that sitting in the dismal waiting room was more damaging and stressful than not seeing a psychiatrist. It was also a Friday, and she wouldn’t have received treatment over the weekend. He took Stella home to rest for a long weekend and she was able to return to school and resume her life.

Dan followed a third bit of advice that other parents cite, which is to “trust your gut” because, as Dan explains, you know your child best. He advises parents to “strike a balance” between listening to medical professionals and using one’s own observation skills. After all, the doctor is exposed to a data set limited to a short observation window and medical records. They don’t know the person. Says Dan, “You might be told, ‘I think we’ve nailed it with this combination of meds,’ and you’re looking at your kid and she’s not there, it’s not her. You have to say, ‘No, I don’t think what I’m seeing is working.’”

There are many pieces that need to align before a person with mental illness can reach recovery, and having a trusted advocate is an invaluable one. The stigma around mental illness certainly impedes treatment; more troubling is that based on the experiences of our contributors, stigma seems to be perpetuated by the medical industrial complex itself.

HIPAA laws are a formidable barrier as well. That a medical professional cannot provide information to the parent/advocate is an obstacle to constructing full-circle treatment where all parties vested in the health of the patient are well-informed. Esme always made a point to contact Jennifer’s therapist to tell her what was really going on at home because she suspected her daughter didn’t always tell the truth in therapy. She would call and say, “I’m just feeding you information…” hoping to increase the efficacy of her daughter’s treatment, but never really sure what was transpiring.

After Kerri’s son was placed in a psychiatric hospital, it took two days for her to learn where he was, and when she arrived to visit him, the receptionist would not tell her and her husband where he was. It’s against the law, after all, until he signed the paperwork. A young man who was experiencing psychosis forgot to ask for the paperwork. Imagine.


Radical Acceptance

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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 itthe 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.


Razor Thin Line

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Good parenting means your heart breaks in a million ways. When your son or daughter strikes out at bat, is ditched in the lunchroom, ignored by a “best friend,” or stood up by a boyfriend or girlfriend, a parent feels it. These incidents make any parent want to put their child in a bubble, surround them with goodness and light. And then your son tells you how much he hates you, your daughter ignores everything you say, and they leave you in a hundred different ways. It hurts when that child you held for hours in the night and kissed from head to tiny, little toe acts as if you don’t know them. At some point you really do need to get to know them in a whole different way.

Part of good parenting, and also dreadfully painful, is letting a child fail and learn to pick themselves back up; giving them the space to discover that one can survive after a so-called-friend declares they have moved on. Flubbing a line in a school play is not the end of the world.

While witnessing their mistakes, all we can do is provide support as they navigate through the problems and solutions. We must show that while we cannot live their life and their problems, we love them unconditionally. Yeah. No problem right?

As if that is not challenging enough for a parent, it becomes a hundred times more complicated when a child begins to use substances. Or, when one’s child suffers through a crisis related to mental illness, particularly when the crisis appears self-inflicted as in the case when a person binge drinks, or goes off medication. Here’s the rub. A person who lives with mental illness needs a reliable advocate, who usually and most effectively is a parent. But parents of those living with mental illness usually agree that their child achieved recovery only after they took control of their own life. A parent’s guidance is critical, but sadly, it is only part of the solution. There is hope for a person with mental illness, but only if they own it.

Parents with adult children diagnosed with mental illness, and this includes addictions, must walk that razor thin line of allowing some failure and not allowing their son or daughter to hit rock bottom. David Sheff, acclaimed author of Clean, and father of a son in recovery from addictions, (http://davidsheff.com/clean) advises against the mythology of the past of allowing your loved one to hit rock bottom. There’s too much danger in that, including the very real risk of death, and further, every relapse becomes more profound than the last.

So parents, we walk the line.


Great Advocates, Lousy Friends

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Perhaps you’ve noticed the PSAs produced by Bring Change 2 Mind, the mental health advocacy organization founded by Glenn Close and her sister Jesse. The organization’s mission is about reducing the stigma around mental illness. The ads feature people in pairs. In one ad, each pairing wears plain white t-shirts with one’s mental illness diagnosis, “schizophrenia,” for example, printed plainly across their front while their partner’s label may say, “sister,” or “wife,” or “mother.” These many white-shirted pairings move through a crowded train station, the obvious message being that there are many among us who live with mental illness and they and their loved ones wish to break the mental illness stigma and spread the word that there is hope. Another interpretation might be that there are many among us who live with mental illness who need support of another.

There’s more to Glenn Close’s partnership with her sister for mental health advocacy than her celebrity. It’s that in order to have hope with mental illness, there really must be a partnership of some kind, whether it’s a sibling, spouse, or in many cases, a parent. A mentally ill person’s chances for recovery significantly improve when they have support. A person in a mental health crisis is often incapable of the self-awareness that he is unwell and only a trusted partner can convince an often unreasonable individual into treatment. And even that can be dicey.

A mother of a son who lives with a serious, persistent mental illness once said she thought the reason there wasn’t more advocacy around mental illness, more marches and money raising for research, was because the parents and family members are too exhausted and can never plan anything too far in advance. You just never know what’s going to happen from one day to the next. Another mother we interviewed admitted, “You never know when the other shoe is going to drop.”

The truth is, a mental illness significantly impacts the loved ones of the diagnosed. Of course, most serious illnesses impact loved ones. But particularly in the early stages, brain disorders are wildly unpredictable. The illness can change day-by-day, hour-by-hour. Symptoms of one’s mental illness are frequently identified after a series of harrowing events, self-harm and frightening behavior. The brain is both delicate and powerful. Dan, whose daughter, Stella, was later diagnosed with schizophrenia, was engaged in intelligent conversation when she began talking about a chip in her head, seemingly out of nowhere.

I once overheard an acquaintance complain that she was tired of her friend cancelling plans on her all the time. “She’s so selfish,” She said. My jaw dropped. Because the “friend” she was complaining about is the parent of a son who lives with a serious brain disorder. Parents of adult children with mental illness often say things like, “Today we are great. If you’d have asked me two months ago…”

And that’s the rub. The parent of a mentally ill child makes for a lousy friend. Yet who needs support more than a person who is constantly on guard, monitoring another’s needs? When a crisis can, and often is, a life or death drama? They are preoccupied. They cancel, don’t return calls, and their everyday concerns are about who will care for and what will happen to their child tomorrow, next year, and after they are gone. When the abnormal amount of time passes without hearing from my friend, the mother of a bipolar son, I don’t take it personally. I worry.

As a result, it is common for the parents of adult children with brain disorders to lead rather isolated lives. It’s difficult for those who don’t live with a mentally ill person to understand the daily challenges. And again, it’s difficult to make plans.

Parents frequently tell us about the physical, mental and emotional exhaustion from expending the energy required to stay on top of things—whether it’s keeping their child on their medication or simply the constant monitoring of moods. Not to mention the stressful decision-making required during hospitalizations, or for addressing treatment choices, or even worse… the insurance.

A single mother of a son diagnosed with schizophrenia told us that while she is often exhausted beyond belief, she does have the support of a male friend who visits her son when he is hospitalized and while she is working. Her son’s friends, a very special group of young men who remain loyal, make sure to spend more time with him when she needs to be out of town.

Our social protocols don’t outline what to do when a friend’s loved one is diagnosed with mental illness only because society seems to see “mental illness” as something different than other serious illnesses. There aren’t flowers, cards, and casseroles. But perhaps there should be. And as with other illnesses, after the initial shock of the diagnosis, there could be follow-up calls, and the simple gesture of listening.

Let’s join Glenn Close and her sister Jesse in spreading the word about breaking the stigma of mental illness. Go one step further and help others understand what mental illness really means to the diagnosed and their loved ones. Some day, it won’t be uncommon for the families of a person diagnosed with serious mental illness to hear, “What do you really need?”


Six Things I Learned From Parents More Heroic Than Me

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I have always relied upon other parents for advice—my mother, peers, and most of all my sisters, who happen to have professional training in child psychology and who exit a parenting phase as I enter. But recently, I came to the astounding discovery that the parents who have the most to offer are those who are least likely to share their parenting experiences with just anyone. These are parents whose children live with serious mental illness such as schizophrenia, bipolar disorder, borderline personality disorder, severe anxiety, and, or depression. These parents have a bounty of experience and advice for any parent. But because of the stigma around mental illness, they remain quiet.

I came into contact with these parents after my nephew’s behavior profoundly changed and he was later diagnosed with a serious mental illness. Everything I had known about parenting— that my sisters knew the answers—seemed to take a strange turn. Elin, his mother and my sister, was cast into unknown territory. She sought good doctors and researched but wasn’t really sure how to help her son and certainly wasn’t prepared to emotionally process what a mental illness diagnosis—a term so stigmatized— meant for her son and for her. But Elin understood the power of hearing others’ stories and I suggested we find mentors; that we turn to other parents, who have had or are experiencing a similar journey, to find support and learn how to help her son and her family. And maybe we could help other parents too.

Our collection entitled Behind The Wall: The True Story of Mental Illness as Told by Parents includes seven stories and amazing insights about love, understanding, but most specifically about parenting.

I knew this project would help my sister. I assumed I would gain insight into her journey and thus become better equipped to support her and her family. What surprised me were the invaluable lessons contributors offered for any parent. In fact, nothing has taught me more about parenting, or life, than the stories these super parents tell. The experiences these quiet heroes reveal often defy comprehension; their lessons are invaluable.

In particular, there are six common themes that surface repeatedly.

  • Allow your child to set their pace.

One of the most difficult parenting concepts to internalize is that our children are not walking, breathing “mini-me’s” with our same goals and drive. We cannot expect to live our dreams through them and hopefully we don’t internalize their failings as our own either. We can show them what we believe is the best path, point out a book that may spark a reluctant reader, role-play a job interview scenario, but ultimately, a well-lived life is self-directed. Nurturing a child’s sense of who they are and what they want is the ultimate gift from a parent. It requires incredible patience because all of us must work, develop and grow at his own pace.

Dan and Rebecca, contributors to our story collection (no real names are used) have such patience. Their daughter, Kristin, suffered from deep depression and was hospitalized for treatment during her high school years. After she stabilized, Kristin was released, though her brain still required time to heal. People who suffer a significant brain event require anywhere from six to twenty-four months to heal. But she didn’t look sick. She didn’t act sick. Imagine the difficulty two hard-working parents had watching their daughter spend a year on the couch in sweat pants, not doing much of anything. Except she was. She was recovering, healing. And though there were times her parents wanted to shake her and tell her to get up, get dressed and get out, they knew they had to be patient. When she was ready, she rose from the couch, returned to school, and now works full-time in her career field.

Not all humans develop at the same rate and it’s unfair to become impatient with the pace a child is moving as long as they are moving toward something. Of course early intervention for learning differences or pronounced developmental issues is critical. But ask any educator or pediatrician and they will report that there are broad age ranges for learning to walk, talk, read, and ride a bike, for example. My daughter began to read competently at four and a half. My son was almost seven. Same house. Same parents. Different humans. We can also expect broad ranges for our children in finding their career and life path, but we can also expect them to continue to move forward.

When parents talk about their children who live with mental illness, they say, look how far you’ve come! Look how much better you understand yourself. The key, they say, is not to humiliate by comparing him to where a parent thinks he should be, or what his friends or siblings are accomplishing, but rather on his own accomplishments in the face of his personal challenges. Or, maybe the child is gifted like my niece who needed her curious mind constantly fed with books and museum trips and new experiences. Allow your child to set the pace and nurture and support it.

  • Have realistic expectations.

Being patient with our child can still allow for expectations. Dan made it very clear that while his younger daughter, Stella, who lives with schizophrenia, may sometimes need to retreat from rigorous academic demands and other life stressors, he expects her to have a fulfilling life. He expects her to live the best life she can even with her challenges. That, he feels, is not only a realistic expectation but also a basic one. Bianca expects her son, Miguel, who lives with schizophrenia, to work a part-time job when he is well and to take care of his health, which includes taking his medications and seeking help when he feels unwell. She expects him, when he is living with her, to do his own dishes and walk the dogs. “He can walk. He can do this,” she says.

The important job we have as parents is to encourage and expect a child to try new things and always put forth one’s best effort. But one must master a finesse, for sure, to separate parental desires from a child’s own interests and passions. By having no expectation, Dan points out, “You’re sending the message that, ‘I don’t think you are capable of anything and there is nothing left in the world for you.’” Certainly, that is not healthy. Delia learned early that her naturally athletic daughter, Gianna, who was diagnosed with borderline personality disorder in her teens, could not participate in group activities or sports that caused her too much anxiety. Gianna now thrives in martial arts because that was the right fit for her.

We heard our contributor-parents tell us in many different ways that they came to understand that it isn’t best for a child to live out a parent’s dreams and expectations; it is important their child continues to be engaged and moving toward reasonable goals they have imposed for themselves.

  

  • It’s not all your fault. It’s not all your success either.

 Decades ago, it was common to blame the mother for causing mental illness. While we now understand mental illness results from a confluence of factors that include genetics, environment, and stress, most parents struggle at some point with misplaced feelings of guilt for causing their child’s illness. Delia, whose daughter was diagnosed at age fifteen with serious mental illness, wonders if she had been as strict as her parents had been, would her daughter have had fewer problems? As Delia has learned more about her daughter’s illness she understands and accepts that she is a good parent and in fact, from where I sit, rather heroic for her efforts and thoughtful outlook.

The point is this: a person’s success in life (an arbitrary concept and a whole different conversation) is not always the result of good, bad, or mediocre parenting. Most dedicated parents strive to provide a structured home life where children have a time and place for homework, a regular bedtime, healthy food, and appropriate consequences for misbehavior. A connected parent will throw a baseball with a little leaguer and listen to a child’s problems. These things contribute to the parent-child relationship and instill positive habits and well being. But doing these things offers no guarantees other than a greater possibility for closer parent-child bond. Unfortunately life’s demands don’t always allow us to be capable parents every day. And as if providing basic essentials aren’t enough, arguably, the true test of parenting is recognizing when a child has more significant needs outside the daily requirements and then finding effective help. Maika explains that as soon as she accepted her son’s mental illness diagnosis, his world got better. Still, success can come from broken and troubled homes too; parents can’t always provide a perfect environment and shouldn’t feel guilt over it. Sometimes, a parent does all the right things yet their child struggles all through life.

There seems to be a deep craving for knowing what to do for our offspring and then assurance that we are doing or did our best. And yet the measurement is arbitrary considering one human can have only so much control of another in a healthy relationship. Perhaps parental competence should be measured by how well we understand our child’s needs and whether a viable attempt was or is made to fulfill. When one’s son received a failing grade in high school, did the parent tell the teacher to give him a break and change the grade so he can get into a good college? Or did the parent work with him to learn underlying reasons he may be underperforming? Did a child reach out for help, and did his parent answer the call?

 

  • Get a life.

 There are times when our children’s needs demand all our time, attention, and emotional energy. When your twelve-year-old daughter is distraught because she wasn’t invited to a party with all her friends. When your son is bullied. While managing a child’s health crisis a parent must be at full attention. Nothing else matters. It’s difficult for most parents not to be thinking constantly about their children. When a child has a significant health issue or has high needs, all the family attention tends to be drawn to him, often at the expense of other children who feel neglected and a marriage that bows under the stress.

But when a child is in recovery and stable, parents need to do the things they enjoyed before or take up new interests– whether alone, with a spouse, or other children. As Dan says, “Don’t let your child’s illness become the core fact of your existence because you have your own existence apart from whatever your child is going through. I think that’s better for the child too. Because if the child starts feeling like everything is about them and what they’re going through and their problem, you end up with guilt and a sense of responsibility and that’s not positive.” Delia recommends a parent take care of oneself. Otherwise, “You’re not going to be there for your kid.”

In her book, Teach Your Children Well, Dr. Madeline Levine has a lot to say about the benefits of letting your child fail in order to grow into competent adults. Living, breathing, and managing a child’s every move intrudes on his ability to grow into a competent human. In this day and age of the infamous over-involved “helicopter parents,” many college professors and administrators note evidence that students have become incapable of managing their own affairs because parents orchestrate all facets of their lives, leaving them no room for discovery for how life really works.

For their own sake, and their children, parents need to have a life. It’s okay, maybe even necessary to miss one regular-season soccer match or baseball game because you’ve scheduled a much needed movie night with friends. There will be another game.

  • Showing anger or humiliation is counterproductive. 

There are times Maika is so angry with her son, Riley, – for drinking, for not taking his meds, for sleeping through the alarm for his morning class— that she hides in her bathroom, cranks up the fan, and screams into the vent until she is hoarse. She has learned that getting angry with him, in front of him, offers no benefit. Riley has been beaten, thrown in jail, and has wandered the streets homeless as a result of going off medication. She has experienced frantic weeks without hearing from him or knowing his whereabouts. Why wouldn’t she get furious when he even hints at going off his medication? So, Maika screams in the bathroom. Then she is calm. She reminds him of the consequences of going off medication, all the bad things that have happened as a result of going off meds in the past. Sometimes it sinks in. Sometimes not.

When Riley takes off wandering without remembering his cell phone charger much less his medication, what benefit comes from being angry at him upon his return? Though she is furious with him, when he is unwell or has been drinking, there is no reasoning with him. Being angry with a person who is mentally ill, or drunk, or having personal troubles only fans flames and can push them out of reach for future help when the individual is finally receptive. Parents of children who live with mental illness have learned that what their children need most is compassion and most of all, connection.

What’s the difference between connection and becoming over involved? One is making it known you are available when your child decides he needs assistance or support, but it’s not a bail-out. Over involved is directing every move and rescuing a child from any discomfort.

Maika does make it clear when his behavior is unacceptable because it impacts her directly. But anger doesn’t get the point across. She has learned from experience that keeping him close is more effective in the long term than risking him being driven away by her anger. Supporting a child while doling out consequences offers far better results. Requiring a teenage son to work for the money to pay off a speeding ticket, revoking a license, and adding items to his weekly chores teaches consequences and puts the onus on the child and emphasizes the problem is his. But getting angry makes the problem a parent’s, because that is who appears to suffer. Of course, easier said than done. Which brings us to…

 

  • Never stop trying to connect. Ever.

Esme’s daughter, Jennifer, is a sweet, funny, smart young woman whose mental illness manifested in behaviors that caused chaos in the family home. She had rages and couldn’t always follow house rules. But Esme insisted on maintaining a strong connection. Says Esme, “We would always reach out to her, even after we’d had our explosions, her fights with us, to always say, ‘We love you no matter what.’” Esme believes their connection helped her daughter and always made clear the distinction between behavior and her daughter’s worth as a person. “Because she is a wonderful human being.”

Maika’s son experienced many psychotic episodes, homelessness, and once landed in jail for six months after committing an offense while suffering psychosis. During one of Riley’s street wanderings over several days, Maika bombarded him with texts as she usually did. When he finally called back he said, “I’ve been thinking about what you said.” At that time he had been ill for more than fifteen years, on and off medication, homeless and in and out of hospitals all over the country. But he was connected to her and when he was ready, he turned to her and said, “What I’ve been doing is not working. I’m ready to do it your way.”

I was most moved by this particular example of staying connected with one’s child. My sister had always done the right things for her children, from taking them to museums to providing music, athletics and good healthy food, none of which can stem mental illness. But most importantly, she listened to them, validated their feelings, and remains close. Her son has always felt comfortable talking to her. When symptoms of mental illness evolved, he felt safe confiding in her and asking for her help. Isn’t that what a parent wants—the opportunity to help their child in whatever challenges they have?

I’ve thought a lot about how to stay connected with my children. Sometimes it is simply putting the phone down or turning the car radio off and listening. It’s about asking questions rather than lecturing. I try to avoid adding my two cents. Once, after my daughter had experienced her first middle-school girl drama, which included the ever dreaded rite of passage ditching by her friends during lunch, I was feeling her pain having been there myself, albeit many years ago. That pain stays fresh. I began texting her just as Maika had done for her hurting son, telling her that I couldn’t wait to see her, that I had an idea for something to do after school… anything just to let her know that no matter what is happening outside the house, she has a loving home to which she can return and people who unconditionally accept her. Maybe she’ll roll her eyes at me, but being reminded you will always be loved goes long and deep.

And perhaps that is the most essential lesson of all that I’ve learned from the amazing parents who contributed to our project. Stay connected. Always.

Your comments are welcome!