Understanding my own stereotypic movement disorder

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Morning Zen Guest Blog Post ~ Juliet Llewellyn-West

I’ve decided to openly discuss something that was for long time a very confusing and sensitive topic to me, but is now something I’ve become fascinated by and am beginning to understand much better. I hope that by writing this, I am able to help or reassure at least one person who is puzzled about their own – or their child’s – behaviour. In my opinion, there is way too little information on these behaviours that I will go on to explain. While research has shown SMD (Stereotypic Movement Disorder) to be surprisingly common in otherwise healthy children, unfortunately, the majority of people are unaware of its existence. This has led to many cases of misdiagnosis, upset and anxiety, over something that is actually a harmless behaviour.

I was aware of my hand-flapping habit from a young age, although I didn’t see anything wrong with it until I got a little older. For me, it was something I did when I became excited or engrossed in my imagination, such as creating things and making up stories in my head. I would go into a sort of ‘imaginary world’ where it was much easier to visualise things and daydream.

Despite being an otherwise very happy and healthy child, this unusual behaviour was pointed out by my family and friends at around the age of eight. I suddenly became very aware of how unusual I looked while in my little dream world. Stereotypies vary widely (which I will go on to explore below), but for me, it was a rapid flapping of my hands and fingers in front of my face, accompanied by a distorted facial expression (sucking in of the cheeks or movement of my face) and often a muttering to myself under my breath. From that description, it is easy to see how these complex movements would be worrying and upsetting to someone who did not understand them.

After my hand-flapping and facial movements had been pointed out, I was able to restrict it to private situations rather than displaying it when around others. Despite my ability to keep it ‘secret’, it was not something I was yet willing to stop altogether. After all, I enjoyed it. It helped with my creativity, and often gave me what felt like an adrenaline rush, leaving my heart racing in the end. Scientists have suggested that this is because children with stereotypies produce the intense physical movement to increase heart rate, allowing more blood to get to the brain and therefore allowing heightened senses and increased brain activity. Throughout my childhood, I would do this a few times a day in private, for periods varying from a few seconds to an hour. I was well aware that none of my friends did this, and as it was something I could ‘choose’ to do when I was alone, it felt like I had some sort of secret. Because of this, I spent a lot of my childhood feeling abnormal and different to other children. I was never short of love and support – in fact, I couldn’t have asked for a better family. This is the thing – there were so many opportunities where I could’ve opened up about it, yet for some reason I was too embarrassed to tell anyone.

I had just turned 13 when I finally started to wonder about whether this ‘secret’ was something I should be worrying about, and I began to feel strangely guilty about it. One night, I plucked up the courage to search the internet, to see if there was anyone else experiencing what I was. Bad move. As with any health-related internet searches, the results were misleading and made me even more anxious. Words such as ‘autism’ and ‘epilepsy’ were enough to scare me away and make me shut down my computer. At 13, shortly after this, I stopped my private imaginative play and hand-flapping. This was difficult, and I spent a good couple of years fighting the urge to do so and feeling worried about what was ‘wrong’ with me. Was I autistic? Was I crazy? Questions like this filled my head on a daily basis. Despite having an extremely loving and understanding network of friends and family, the severity of what I’d found out on the internet made me too ashamed to speak up about it. This became frightening and quite lonely. For years, I avoided searching it online or watching/reading anything ‘psychology’ related, in fear that I’d find out something about what was wrong with me. I wish I’d known that there was absolutely nothing to worry about.

It is only over the past couple of years that I’ve been able to start talking openly about the behaviours I experienced as a child, although I really wish I’d done it sooner. I have recently become aware of how harmless, common, yet frequently misunderstood, these behaviours are, and it has been liberating.

The main thing for me was discovering that although self-stimulating behaviours like these are common symptoms in children who are on the Autistic Spectrum, they are also prevalent in otherwise neuro-typical children. Unfortunately, the research on this is limited, and therefore parents are frequently misled to thinking these behaviours are an ‘indicator’ of autism or other conditions such Tourette’s, tic disorders or epilepsy.

The presence of stereotypies in otherwise neurologically healthy children are known as ‘Primary (Non-Autistic) Motor Stereotypies’, or Stereotypic Movement Disorder if the behaviour interferes with everyday life or is self-injurious. It is defined by John Hopkins Medicine as “rhythmic, repetitive, fixed, predictable, purposeful, but purposeless movements that occur in children who are otherwise developing normally.”. John Hopkins Medicine (A US Healthcare system) have divided the symptoms into three groups;

  • Common (habits such as thumb sucking, nail/lip biting, hair twirling, body rocking, self-biting, teeth clenching/grinding and head banging)
  • Head Banging (nodding the head from side to side, up and down, or shoulder to shoulder)
  • Complex Motor (hand/arm flapping or waving, wiggling fingers in front of the face, facial tics, rotating or opening and closing the hands, and finger wiggling)

Although my own stereotypy came out when I was excited or engrossed in my imagination, children adopt these movements for a whole range of other reasons, such as fear, stress, for escapism, or to express their distress. It has been shown that the movements themselves are harmless (apart from the impact they may have if displayed in social situations), and do not indicate whether a child is ‘normal’ or is suffering from other psychological problems. Research in the US has suggested that complex motor stereotypies may be prevalent in as much as 3-4% of pre-schoolers, with the symptoms continuing into later childhood and even adulthood for some. With something that is apparently so common, I find it sad that there is little to no public awareness on the topic. There seems to be increasing amounts of research on this in the US, but in the UK there are only a couple of specialists. I have read posts from various UK parents who have been to GPs with no knowledge at all on complex motor stereotypies, and their children have either been misdiagnosed with autism or not taken seriously. It worries me that other children are experiencing this and may be feeling ashamed or confused like I was, or that some parents are much more worried about their children than they need to be.

Although the causes of Motor Stereotypies are not fully understood, The Ulster Medical Society has suggested that some children appear to have a genetic predisposition to it. Motor Stereotypies in children displaying no other psychological abnormalities are nothing to worry about. In fact, I have recently come across many posts of adult CMS sufferers who believe it is a gift, in some ways, allowing the imagination to reach higher levels. However, there are behavioural therapies available for children who are finding it is affecting their everyday life.

I have learned a few things from this, one of them being the danger of the internet in terms of misdiagnosis and health-related anxiety. Although extremely helpful, the Internet can be a scary place. I wish that I was able to speak up about this when I was younger, rather than letting the internet allow me to believe I was suffering from something much more serious, causing me to keep it to myself for many years and suffer in silence. My teenage magazines were always full of true-life stories about all sorts of social, emotional, love or health related issues, but nothing remotely like this. I took this as a false indicator that I was alone.

As I’ve grown older, I’ve realised that no one is normal. Everyone has their quirks, but they are ultimately what makes up a person. However strange or unusual you perceive your problem to be, it is highly likely that there are millions of people going through something similar. This applies not only to mental health related issues but also physical and emotional ones. No problem is too weird or strange to open up about!

This has also been a positive for me as I have turned my ‘fear’ of psychology into a fascination and a passion, and I will be going to University to study it as a Degree in September this year.

Sources:

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juliet4Juliet Llewellyn-West is a nineteen year old student on a gap year, currently living at home in Bedfordshire, England. At the moment she works with a daycare service looking after preschoolers, but in September will be leaving to study Psychology at the University of Sussex. In her free time she enjoys amateur dramatics and reading.

My Mantra

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Morning Zen Guest Blog Post ~ Linda K. Schmitmeyer

“Pass the ketchup,” says Luke, already reaching across the dinner table to grab the Valu Time bottle from his big brother, John. I buy generic ketchup now, economy size, although there was a time when only Heinz graced our table.

It is a Friday evening in the spring of 1997, and our family is eating hamburgers and French fries. I didn’t bother with a salad—too much effort at the end of a workweek. I’m at one end of our small kitchen table, purchased at a farm auction in Ohio shortly after Steve and I were married. We brought it with us when we moved to Pennsylvania a decade ago, along with other hand-me-down furniture and a barn full of antique farm equipment. Steve had accepted a job with SAE International, an engineering society headquartered about thirty minutes north of Pittsburgh. The move wasn’t easy—it meant transporting several of Steve’s full-size farm tractors, a goat, a pet rooster, a pair of geese, a barn cat and her kittens, and our dog, Otto—but Steve and I were excited about what lay ahead.

Seated opposite me is my husband of twenty-two years, whose gray, impassive eyes track the ketchup bottle as it moves back and forth across the table. Thirteen-year-old Luke sits to my right; John, seventeen, and my daughter Elly, seven, are on my left. Keeping Luke and Elly apart makes for more harmonious family meals, a tradition I cling to despite our challenges and even if we’re only eating hamburgers and fries. I know Steve wants the ketchup but won’t ask someone to pass it. Instead, he’ll wait for the kids to finish and then reach across the table for it. Steve has changed in many ways since the onset of his mental illness several years ago. He’s emotionally erratic and more combative when the mania flares, typical of someone with bipolar disorder. But he’s also less confident in his interactions with others, hesitating to insert himself into any conversation. Never would I have imagined that this once-gregarious man would feel such uncertainty that he’d find it difficult to ask someone to pass the ketchup.

If I were feeling kinder, I’d enforce the traditional parenting roles in which I was raised. “Pass your father the ketchup,” I’d say, suggesting that a parent should be served first. But not tonight. I feel vulnerable, worn out, and unsure of how much more I can take of living with a man who depends on me for everything, from following his medication regime to knowing what day it is.

***

I’ve been seeing a counselor off and on for several years now. Mostly we talk about coping with the multitude of changes brought about by Steve’s illness: its effects on the children, the challenges of living with less money, my feelings of loss. At a recent visit, she asked me what I wanted from my relationship with Steve, and although I’d once told her that my life would be easier without him, I’d stopped short of saying I wanted out of the marriage. This time I answered, “I could never leave someone who’s sick.”

But that’s not what she asked, I thought to myself. “You wouldn’t leave somebody because they have cancer,” I added, trying again. Staying with Steve is tremendously difficult. For years now, I’ve been walking on eggshells around him, holding the family together while hoping the doctors will find medications to quiet his mind. I’m also always trying to accommodate him, giving in because I’m afraid he’ll have another “episode” and disappear for a day or two without telling anyone where he’s going. Leaving Steve feels impossible because he’s trying to get better, but I wonder how much longer I can endure such an emotionally lopsided relationship.

As I rub my fingers along the kitchen table’s chipped Formica top, I am reminded of my mother, who when faced with the many challenges of caring for her family frequently paraphrased a line from her favorite Robert Burns poem: “The best laid plans of mice and men go oft awry.” Steve and I had planned to replace this table and some of the furniture we brought with us once he was established in his job. But that never happened.

I often think of my mother as I struggle to care for Steve and the children, especially now that there is less money than there used to be. She and my father, a baker, were ingenious when it came to providing for their large brood on his small salary. I’m the older of two girls in a family with ten boys. To make ends meet, Mother would sew our clothes and preserve hundreds of quarts of fruits and vegetables each summer, while my dad would mend our shoes and make laundry soap from lye and the bacon grease he brought home from the restaurant where he worked. Our lives were simple. I grew up in the 1950s in the small manufacturing town of Sidney, Ohio, and except for Sunday afternoon visits to relatives, our family traveled little. I was eleven years old the first time I left Ohio, and that was to see an aunt and uncle who’d moved to Indianapolis.

After high school, though, I wanted something more. I’d started talking about going away to college, which my father thought unnecessary. Early in my senior year when I was upstairs doing homework in my bedroom, a small pink-and-white room I shared with my sister, he appeared in the doorway. He’d just gotten home from the restaurant, and I knew something was up. He rarely initiated discussions with his children, preferring instead to leave the stickier issues of childrearing to Mother. “Why do you want to go to college?” he asked. To my father, who had grown up during the Depression and quit school after the eighth grade, a high school diploma was sufficient for a girl who was likely to marry her high school sweetheart. I didn’t have a clear-cut plan for what I wanted to do after high school, but I knew I wanted a life grander than the one I was living. Going away to school seemed like a way to make that happen.

I met Steve at the University of Dayton, a small Catholic college forty miles south of my hometown. He’d grown up on a dairy farm not far from Sidney and was studying mechanical engineering. We started dating in our senior year and married several years later. After graduation, he worked as an engineer at Wright-Patterson Air Force Base in Dayton, and I taught English at a nearby high school. A dozen years and two children later, Steve accepted the job at SAE. We were both excited about the move, the beginning of what I thought would be an exciting new chapter in our life together.

***

Less than three years after our big move to Pennsylvania, I learned while sitting at this table that Steve had quit his job at SAE. He hadn’t talked to me about leaving and didn’t have another job lined up. By then we had three children, and although I taught writing two evenings a week at a local community college, I was mostly a stay-at-home mom.

I’d heard Steve’s car pull into the driveway earlier than normal, which wasn’t unusual when he had to travel the next day. He oversaw committees of engineers who developed standards for the aerospace industry, and he traveled frequently in the spring and fall of the year. Sometimes I went with him. The year before Elly was born, we traveled to Moscow for a meeting—far grander than my trip to Indianapolis so many years ago. When he was going to be away for several days, he often tried to get home to be with the boys when they got off the school bus.

I was sitting with all three kids at the table, talking to the boys as they ate their after-school snacks. John was in fourth grade, Luke in kindergarten; Elly would turn one later that month. As I looked out the window, I saw Steve crossing the cement slab at the end of our driveway, which he and his father had poured shortly after we moved.

At forty, Steve was still handsome, slender, and fit, with only hints of gray in his sandy blond hair. From afar, he looked like a successful businessman in a dark suit, his tie with red stripes loose around his neck. I liked to tease him by saying that up close he still looked like a farm boy, with his big hands and easy smile. That day, though, I could see that his face was drawn. He looked tired and nervous, a rarity for this confident, highly energetic man. And when he walked into the kitchen, without preamble and while the kids munched on pretzels and carrot sticks, he told me he’d quit his job.

Later, out of earshot of the children, he explained what had happened.

He’d been talking to his boss, Glenn, who’d recently joined SAE. Steve didn’t particularly like working with him. They were discussing the new aerospace conference Steve was organizing at Wright-Patterson AFB, which he’d been asked to oversee because of his connections there. Planning a conference was less technical and more bureaucratic than Steve liked, and he often referred to the assignment as “glorified party planning.”

According to Steve, they were discussing an issue about the conference—nothing out of the ordinary, just another thing they didn’t agree on—when Glenn paused in the middle of the conversation. Then, as if wondering aloud, he asked Steve whether he thought SAE was a good fit for him. His tone was friendly, Steve said, “as if he knew I preferred engineering standards over organizing a conference. He didn’t sound like someone who wanted to fire me.”

The conversation continued, but Steve could see that something was on Glenn’s mind. Never one to dance around a conversation, he confronted his boss point blank: “Glenn, do you think I should leave SAE?”

Glenn’s lower lip quivered, Steve said, but he said nothing.

“I told him, ‘Fine,’ and slapped his desk. ‘I’m out of here.’ And I went right to Judy,” who worked in Human Resources, “and told her I was quitting.”

Steve soon found an engineering sales job in a small machine shop, only to be laid off six months later; this was followed by another sales job that lasted only four months. Then a college friend set him up as a technical sales rep for the plastics industry, and he started working from an office in our home. But sales were slow and our money stretched thin. I’d found full-time work at a weekly newspaper shortly after Steve left SAE, but my salary fell far short of what he’d made as an engineer. To get by, we sold the tractors and farm equipment he’d hauled from Ohio.

Around this time, Steve’s mood began to change. The high spirits and animation that marked his early years were replaced by lows I’d not seen in our twenty years together. I would come home from work and frequently find him lying on our bedroom floor instead of working in his office. Steve had acquired the habit of relaxing on a floor from his father, who between farm chores would lie on the living room carpet because his work clothes were too dirty for the couch.  When I’d urge him to work harder in his sales job, telling him that we needed his income to pay the bills, he’d complain that he didn’t have the energy for work anymore.

“I just don’t have the interest,” he’d say, his words angering and confusing me. Sometimes I would call him lazy, and a fight would ensue. Other times I tried reasoning with him.

“Do you think I want to work all the time?” I’d say, and without waiting for answer, add, “I do it because I have to. I do it because my family needs me.”

I often thought of his listlessness as a “mid-life crisis,” figuring he was tired of our life together and wanted out of the marriage. He protested, saying he still loved me, yet fell deeper into lethargy. When I urged him to see a psychiatrist, he agreed, and she diagnosed him with “situational depression” and prescribed Prozac.

Although the antidepressant temporarily lifted his spirits, Steve continued to have trouble focusing on his engineering sales job. He began talking more about his concern with SAE’s vice president, who was in charge of the society’s day-to-day operations. Under his leadership, Steve said, the nonprofit neglected engineers working in their fields and focused too much on fundraising for SAE’s Foundation, which had been established recently to support math and science education in high schools. He felt that the society needed a change in leadership and spearheaded an effort to make that happen. Although he hadn’t worked there in several years, he was still a member of the Pittsburgh-area chapter and attended monthly meetings, where he talked to anyone who’d listen about his campaign against the VP. He also began spending more time at SAE headquarters’ library, gathering information on the society’s mission and obtaining the addresses of the board of directors, the members of which he planned to write with his concerns.

This was the early 1990s, and not even his psychiatrist thought of Steve’s obsession with his former employer as mania. For many years, Steve had been a champion for SAE and its mission. He became a member of the student chapter in college, and when he worked at Wright-Patterson, membership in the Dayton chapter soared, due mostly to Steve’s promotion of it. His efforts were recognized nationally when he was named one of the society’s three Outstanding Young Engineers the year before he was hired as an SAE staff engineer. To me, though, his campaign against the vice president was just a diversion from his floundering sales job, and we argued bitterly.

“Why are you so worried about SAE now?” I wanted to know. “You left three years ago. Give it up!”

When he’d ignore my plea, I’d continue, “You spend so much time trying to fix an organization that doesn’t care about you anymore. What about helping a family that needs you? I can’t do this alone.”

If I persisted in my efforts, he’d often say, “Somebody’s got to stand up for what’s right,” a phrase I heard regularly as he became more and more engulfed by the mania.

Eventually, Steve’s fixation caused us to separate, at least temporarily. Two months after moving out, he attended an SAE convention in Detroit with the hope of being able to address the board of directors about his concerns with the vice president’s leadership. Although he didn’t get to address the board, he did meet with its president, who told him to give up the cause and go home. With the convention drawing to a close and the window of opportunity to “fix” his beloved society narrowing, Steve went on a rampage through the convention center until the police arrived and hauled him away in handcuffs. He was hospitalized for a month, and his diagnosis of situational depression was changed to manic depression, or bipolar disorder as it’s called today.

Three years later, after a mood stabilizer failed to quiet his obsessive thoughts about the engineering society, Steve’s diagnosis was changed to schizoaffective disorder, which has some of the symptoms of schizophrenia but also the mood swings associated with bipolar disorder.

“Is there no end to this?” I asked my therapist after I told her of the change. We were talking about how doctors, lacking reliable biological markers that would signal a mental illness, rely mostly on a patient’s behaviors when diagnosing a mental condition. I remembered Steve’s abrupt departure from SAE, seven years earlier. It was the first symptom of his mental instability, although no one thought of it that way at the time.

Coming to grips with a severe mental illness takes a long time. Oddly, the breakdown in Detroit helped. Putting a label on Steve’s campaign against the vice president was the first step in helping me to understand that he’d changed as a result of a medical condition, not because he didn’t love me anymore.

But it’s still hard for me to accept that people can’t simply control their thoughts and actions; the idea runs contrary to the deeply seated notions of my youth, when my parents showed through their lives how one could overcome most challenges by merely setting one’s mind to the task. What I didn’t know then, though, was that you can’t always rely on your mind to meet those challenges. Once energetic and determined, Steve can no longer trust his own mind to see things as others do. And even though I don’t fully understand the changes of the past several years, I try not to let the children sense my uncertainty.

Our son John tries to be stoic and helpful; that’s his nature. He takes on a fatherly role, reading books to Elly at bedtime—something Steve can’t always do. Elly, in contrast, is emotional. She cries when upset, and she’s especially affected when Steve’s paranoia flares and he leaves home unexpectedly. He’ll drive the countryside for hundreds of miles, stopping only to buy gas or eat at a fast-food restaurant. He’ll park his car facing the road, afraid that someone is following, intent on stopping him from pursuing his cause against SAE. When Steve leaves like this, Elly comes to my bed in tears.

“When is Daddy coming home?” she’ll ask. I’ll reassure her that it will be soon, and pulling her close, I’ll rub her back and stroke her fine blonde hair.

“Take a deep breath and hold it,” I’ll say, helping her relax. When her breathing evens out and she is asleep again, I’ll worry about how Steve’s illness will play out in the lives of our children. On many of these nights, I think of Luke, who’s had the most trouble accepting Steve’s illness. A child with his own challenges—he was diagnosed with ADHD in elementary school and has a learning disability—he did better growing up in an environment with clear-cut rules, where black and white didn’t overlap and where sickness and health were separate. Once, when he was in middle school and I was trying to explain his father’s behaviors as symptoms of an illness, he shot back: “He could control himself if he wanted to. If you put a gun to his head, he could control himself!”

But I also feel sorry for Steve. The drugs make him lethargic, too uncertain of himself to ask someone for the ketchup. Yet he perseveres in the hope of getting back some of his life. Since Detroit, he regularly visits a psychiatrist and a therapist, and they help him to understand the changes in daily life for people with mental illnesses. Before the appointments, Steve and I prepare a list of questions and concerns about what’s happened since his last visit. And because Steve’s short-term memory is impaired from both the medications he takes and his altered mental state, we also write down any shifts in moods and thinking the doctor or therapist should know about. He also attends support group meetings, and has participated in vocational retraining through a government program that helps people with disabilities find work. He won’t work as an engineer anymore, though; the stress would be too great.

I know that Steve’s mind still festers with thoughts about SAE, despite his awareness that he can’t act on them. After Detroit, when Steve was discharged from the hospital and came back home to live, we had an unspoken agreement that he would no longer pursue his vendetta against his former employer. “You’ll know he’s getting better when SAE is no longer important to him,” a nurse had told me when he was in the hospital. I often remind him of this.

Yet, in one of the notes he prepared for his therapist, he wrote about his fear of my leaving him if he persisted in his cause: “If I do write the letters [to the board of directors], I think I could work better or look for a job better. Also SAE wouldn’t invade my mind when I’m raking leaves, driving the car, or trying to sleep. I went through my SAE box and put my complaints on sheets of paper, [but] I don’t think I’ll send these because Linda won’t put up with it.” For years Steve had carefully guarded the information he collected about SAE, which he kept in a cardboard box in his bedroom closet.

***

Steve watches Elly as she puts ketchup on her burger and fries, placing the bottle back on the table when she’s finished.

I soften; he’s a good man who’s lost so much.

“Pass your dad the ketchup.”

Looking up from her plate, Elly grabs the bottle with both hands and hefts it toward her father, who takes it without comment.

Living with a mental illness has changed my life tremendously, but I’m okay, I remind myself, and my family is still intact. “The best-laid plans . . .”

Over the past several years, I’ve unwittingly crafted my own mantra. I say it often, at times like this, when I feel saddened and overwhelmed: “To get to the end without being bitter.” It might not be as poetic as my mother’s, but it helps me to persevere.

*******

Linda K. Schmitmeyer is the author of one of the essays in the book Writing Away the Stigma.

Palau celebrates “Leaders as Clowns” for Children’s Mental Health Awareness Day

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Morning Zen Guest Blog Post ~ Jasmine Vergara
Update from Children's Mental Health Awareness Day, Long Island Park, Koror Palau!

The Ministry of Health offers young children, youth, and young adults with mental health and substance use challenges in the Republic of Palau, the services and supports they need to meet their goals at home, at school, and in the community.

The Behavioral Health Division and the Palau Behavioral Health Advisory Council, led the 2nd National Children’s Mental Health Awareness Day at the Long Island Park Carnival to highlight the importance of positive mental health.

Our theme this year was on “Building Resilience and Positive Support." Our focus on positive mental health was inspired by the “Leaders as Clowns” article from a recent Children's Mental Health Network Morning Zen post by Dr. George Patrin, pediatrician, veteran and globetrotting clown spreading the message of positive mental health.

  • Taking the “social clown persona - a person who remains light hearted, positive, with no reservations or shyness about being of service to all; a leader that brings joy and diffuses stress, even if for only a moment, out of genuine concern for others, those in our sphere of responsibility and care”- from a recent Children’s Mental Health Network Morning Zen Post by Dr. Col. George Patrin.

We partnered with the Ministry of Education in inviting students from different schools to attend the event. We had a huge turnout of over 300 children and close to 200 adults. Wow!

Enjoy the photographs from our most successful Children's Mental Health Awareness Day event!

  • palau4
    Ribbon Cutting (L-R) Director Andrew Tabelual and Chief Ray Mechol of the Ministry of Education, Director Eydeline
    Ikea of PCAA, Honorable Minister of Health Gregorio Ngirmang, Chairman of Palau Behavioral Health Advisory Council Alex Ngiraingas, Acting Chief for the Behavioral Health Division Dr. Jasmine Vergara.
  • palauleaders
    “Leaders as Clowns” for Children’s Mental Health Awareness Day theme “Building Resilience and Positive Support”. His Excellency President Tommy Remengesau Jr. wears the red nose with Dr. Jasmine Vergara, Consultant Psychiatrist and Acting Chief for the Behavioral Health Division, Ministry of Health (May 7, 2015)
  • palau5
    “Leaders As Clowns” on Children’s Mental Health Awareness Day at the Carnival (L-R) BHD Dr. Jasmine Vergara, MOE Director Andrew Tabelual, PCAA Director Eydeline Ikea, MOH Minister Gregorio Ngirmang, PBHAC Chairman Alex Ngiraingas
  • palau6
    Behavioral Health Division at the Children’s Mental Health Awareness Day at the Carnival. May 8, 2015
  • 20
    Honorable Minister Gregorio Ngirmang headed the Press Conference for Children’s Mental Health Awareness Day and Prevention Week, last May 6, 2015 with the Behavioral Health Division and the Palau Behavioral Health Council.

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jasmine2

Jasmine Vergara, MD, is a Consultant Psychiatrist at the Behavioral Health Division, Bureau of Public Health, Ministry of Health, Palau. Jasmine is one of our favorite "Network faithful" and is one of those "atypical" psychiatrists, who continues to learn and discover great and new possibilities, while always focusing on finding ways to improve services for the amazing youth and families she works with each and every day.

Staying

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Morning Zen Guest Blog Post ~ Tahirah Alexander Green

On Friday, February 25, 2011, a nineteen-year-old college sophomore lost her shit. She was usually a responsible person. Too responsible, even. The kind of person who made a plan for how to plan. As a freshman she’d created a detailed chart of requirements and course options for her next three years at university. Her preparation wasn’t completely absurd: She was the type of person who tripped up stairs and forgot what it was that she’d forgotten.

On the day she lost her shit, her body, which swung like a pendulum from a size eight to a size twelve, was in mid-swing at ten and a half. This meant that none of her pants fit properly. As a logical response to this, she wished she had a bigger ass. She also wished that her chemically relaxed hair would grow long and healthy. Instead, it was breaking off for the third time since she was thirteen, leaving a frizzy, chin-length mess sprouting from her scalp.

It was winter, so her brown skin was running high yellow, meaning it was getting closer to the “light, bright, and nearly white” side of blackness. She preferred her skin to be darker because she associated the tone with summer. She preferred summer. The gray skies and cold temperatures of winter debilitated her.

Nearsighted, she wore sienna wire-framed glasses. She lost them regularly, as she lost most of her things. Her cell phone, her identification card, her planner. It was a tendency she counteracted with early preparation for everything, an attempt to give herself enough time to find whatever item she would inevitably misplace along the way. As a backup strategy, she would tell her friends where she put things so they could remind her later.

That Friday night, though, she lost something intangible. She tried to understand it, explaining the loss through lengthy text messages to one of her best friends. Variations of the sentence “I don’t want to feel anymore” transformed into “I don’t want to live anymore.” Her friend had heard these sentiments before, but tonight was different. Tonight the messages came rapidly, with vivid descriptions of the kinds of harm she’d like to do to herself. Her friend tried to calm her down, even rushing over to her dorm room late at night to watch over her. Her friend tried to remain calm as she explained to the 911 operator that something was wrong with Tahirah.

***

“Wouldn’t you like to take a leave of absence?” Shernell, the student affairs representative, asked, hands folded in her lap. She was a plump black woman in her thirties, with a hair tie stretched thin over the long braids that hung past her shoulders. She stared across a small, round table in her dimly lit office at Tahirah, whom she called variations of Tah-har-ah no matter how many times she was informed that the correct pronunciation was Ta-here-rah.

Tahirah shook her head and prepared the words in her mind before speaking. She was terrified of being inarticulate. Being inarticulate led to nights of insomnia, the poorly chosen words playing on repeat in her mind. Sometimes she thought of better, more precise words and berated herself for not having said them.

“No,” Tahirah answered. “It’s easier to stay here.”

Shernell looked at her, incredulous. Tahirah understood her confusion. Two weeks ago, on her way back from the dorm’s laundry room with the friend who had called 911, Tahirah had stepped out of an elevator to see two campus police officers loitering outside her door. She walked past them into the small, cluttered square that was her dorm room. The wood floor was covered with shredded yarn from a crochet project she’d abandoned a few hours ago, when distraction had stopped serving as a suitable coping method. Shreds of white paper also covered the floor; she’d chosen to slice them instead of her skin. Jewelry, crochet patterns, coins, medication, half-empty Gatorade bottles, and tissues upon tissues were strewn across her desk.

“So, how’s it going?” one of the officers, the younger of the pair, asked her. His hands were in his pockets and he seemed optimistic, even cheerful.

She shrugged.

“Is everything okay?”

She avoided eye contact, said “Mmhmm.”

“So what’s going on over here? Want to explain this?” the older officer asked curtly. He stood with his arms akimbo, nodding his head towards a neon-orange knife skewered into a paper towel roll.

She shrugged.

“So . . . umm . . . you draw those?” the younger officer asked, gesturing to the chibi illustrations on her closet door.

“My brother did,” she answered, her voice whispery and low.

“Oh, cool. What do your parents do?”

“My dad works at an airport.”

The officer continued to attempt small talk while Tahirah stared at the floor. She hoped they wouldn’t start searching the room. Her roommate would hate that. She’d already be pissed by how much of a mess Tahirah had made.

His attempt at small talk failing, the officer sighed. “We’re not really trained to do this. I’m sorry.”

Tahirah shrugged.

“We’re going to take you to Western Psych’s ER,” said the older officer. “If you don’t go voluntarily, we’ll have to make you. Then they’ll have to keep you for a while.”

She shrugged. “Okay.”

“Okay?” the older officer asked.

“I’ll go.”

***

When she arrived at Western Psychiatric Institute and Clinic, she passed through the metal detector, and security took her cell phone away. The rest of the night was spent doing paperwork and waiting to be seen by a doctor. The obnoxious laugh track of a ’90s sitcom played intermittently from a television in the corner of the room. As time passed, she became increasingly uncomfortable. Hospitals were creepy, smelling like death and bleach.

Eventually she was summoned for her assessment. She did not make eye contact with the doctor, a white male whose face she wouldn’t remember. The doctor asked her a series of questions she’d been asked already. Why was she here? How did she get here? She was sure that someone had already told him her earlier replies. She answered as concisely as possible.

“Are you taking medication?” he asked.

“No. Not now,” she mumbled.

“Why not?”

If she’d been honest, she would’ve told him it was because she resented needing a little pill to function “normally.” That even though she worked two part-time jobs, she was still pretty broke and couldn’t always afford the Celexa. Her father’s insurance was inconsistent with its coverage, and her family wasn’t financially stable enough even to ensure shelter, let alone healthcare. She didn’t want to talk about money, though; if she did, she might cry. Any sign of weakness might give them an excuse to keep her there.

“I was feeling better,” she lied.

She’d read somewhere that it was common for individuals with mental disorders to discontinue their medications when their symptoms improved. She figured it would make her incident more justifiable. It’d be an easy fix: all she needed was to be drugged again.

“What triggered you tonight?” he asked.

Maybe it was residual disappointment from having to return home for winter break. Tahirah had been accepted into a program to build a library in Ghana, but in the end she couldn’t afford to go. Instead, she got to remember that the past summer’s foreclosure on her parents’ home had actually happened, forcing her parents and siblings into a cramped apartment. Now she got to see her mother throwing tantrums, peeing herself and sobbing. Nothing about her mother resembled the woman she was before her stroke two years ago.

Maybe it was the guilt of escaping when her family couldn’t. Maybe it was because of the Shittsburgh Gray—the persistent, sunless sky that Pittsburgh endures for months.

“I don’t know,” she answered.

The doctor explained that he thought it was because she’d gone off her meds. He let her leave.

Shernell drove Tahirah from the emergency room back to her dorm at four in the morning. Shernell was chosen for this task, Tahirah assumed, because she was the housefellow for her dormitory, Morewood Gardens. The housefellows were full-time staff members who were supposed to enrich the living experiences of residents in campus housing. They usually functioned behind the scenes, except when they provided free food, spammed students with emails, and in Shernell’s case, served as amenable transport.

That night, Shernell convinced Tahirah to take a week off to regroup. Tahirah was hesitant to take her advice. She had already been sick with the flu and missed some classes, and her coursework remained one of the few things that hadn’t slipped entirely out of her control. She didn’t want to fuck that up. But Shernell seemed so calm, so confident. It’ll be fine, Shernell assured her.

Before the week ended, Shernell would call to inform Tahirah that she was failing three classes. She hadn’t failed a single assignment she’d completed prior to the call.

***

Before her trip to Western Psych, Tahirah had thought the spring semester was going well. She finally felt comfortable opening up to her psychiatrist, Dr. H, which meant that their sessions were no longer awkward silences during which Tahirah memorized the pattern of the office’s carpet. Eight months of happy pills, an antidepressant called Celexa, seemed to be paying off.

She was working two campus jobs, which meant she rarely had to go through the guilt of asking her father for money he didn’t have to spare. She could afford to buy some of her textbooks, for once, although she still acquired the majority through libraries and copyright-violating photocopies. More important, she was able to buy food and no longer had to mooch off her friends as she’d done the previous semester. Back home, food wasn’t always guaranteed.

She shared a room with Michelle, an industrial design major who had also been her suitemate during freshman year. Their room was small, with every piece of furniture crammed next to the other and leaving only a small space in the center of the room. She’d previously lived in her grandmother’s house—her mother’s mother. This meant that when she cried, she was asked, “Why are you doing this to yourself?” Living with grandma meant she was supposed to suck it up and go to church. That, of course, was preferable to living with her parents.

Her parents and siblings—Taylor, twelve, and Jamal, seventeen—had recently moved into a two bedroom apartment after their home was foreclosed upon. Stuff that the household of five had accumulated over the years was piled into the narrow apartment. Her siblings each got their own room, while her parents shared a sectional sofa in the living room. Her cramped dorm room was certainly more spacious than her family’s new home.

Her crowded room was where she spent the majority of her time, which was split between self-loathing and studying. She was enrolled in six academic courses and one student-taught course. This was considered an overload. She overloaded that semester, as she would every semester after her freshman year. This wasn’t considered overachievement at her university; this was common practice, and it suited Tahirah just fine. She preferred to keep busy. It kept her mind off of things at home.

She’d believed she was doing fine, academically. She’d missed a few days when she caught the flu, but had otherwise done far better, attendance-wise, than in any other semester. Yet here she was, mid-semester, with three of her professors claiming she was failing. Failing so badly, in fact, that they thought it wise for her to withdraw from their classes. It was an option she resisted not only because it would delay her graduation, but also because it would relegate her to part-time status, thereby risking the loss of her financial aid and housing.

These are the things Tahirah thought about as she tried to explain to Shernell why she didn’t want to take a leave of absence. She didn’t know how to properly articulate that she was choosing between a bad option and a worse one.

***

After it became clear to Shernell that Tahirah wouldn’t be leaving, the list of individuals involved grew considerably. Discussions and emails culminated in a meeting with Tahirah, two professors, and the dean of her college.

She entered the Academic Advisory Center and sat awkwardly on a couch next to the two professors. One of them happened to be her academic advisor for creative writing, a thin woman with short and wavy brown hair. Her advisor was composed, as always, and today she seemed a bit cold, especially in comparison with the other professor. The other woman was chubby, with a loud voice, stringy reddish-brown hair, and thinning eyebrows that made her look perpetually annoyed.

Together they waited for the dean, who, Tahirah had been informed, would advocate on her behalf. Eventually the dean, a slim, bespeckled woman with round glasses and hair cropped close to her scalp, greeted them. She led them into a meeting room, where Tahirah sat beside her and across the table from her professors. The meeting, which Tahirah had thought was intended to reach a compromise, soon became a rather one-sided discussion of the reasons she would not be able to keep attending her classes. The professors presented a united front, both steadfastly assured that Tahirah’s withdrawal from their courses was the best option—for them, at least.

“The withdrawals from the classes won’t be listed on your transcript. We’ll erase them completely,” the dean explained, a laugh in her voice.

Tahirah wasn’t sure why this was presented as if it were a favor; the withdrawal deadline hadn’t even passed yet. Her mind filled with questions, making it difficult for her to prepare her words. Why were the professors in the creative writing program unwilling to work with her? Her professors in the international relations and politics program had agreed to let her make up the work she’d missed during her regrouping period. They had even agreed to give her extensions on her assignments, should she have an episode that would impact her ability to complete them.

“The creative writing program is structured differently. Class participation is more important,” the professors each explained. So it didn’t matter that she completed her assignments; if she was too depressed and anxious to be vocal, she was doomed. It was a line of reasoning that would’ve been easier to accept if she hadn’t taken a screenwriting class the previous semester and silently earned an A.

“Your attendance hasn’t been good,” a professor added. While it was true the she had missed classes because of the flu, those absences that had already been excused with a note from health services. It was the time she’d taken off for her mental health that was inexcusable. Apparently, taking off that week to regroup hadn’t been as okay as Shernell had believed it would be.

“The quality of your work has gone down,” her advisor added.

So the checks and check pluses she’d received on her assignments —a maddeningly vague grading scale used in the creative writing program—had actually denoted failure.

“I can’t even tell if you’re doing the work,” the other professor complained.

When she said that, Tahirah started to cry. She had stayed up late on so many nights to read and complete exercises for her classes, even during her “break.” So much for control. This was what her illness meant: failure. It didn’t matter that she was taking medication and seeing a therapist. The fact that she still panicked when she had to speak in front of a group meant she would never succeed. Soon she was crying because she was crying. She knew she was making a great case for herself, teary eyed and inarticulate.

“Okay,” she said. She had to get out of the room.

***

The meeting being the epic failure that it was, Tahirah refused to let the semester end similarly. She added a mini-course to her schedule, giving her enough credits to still be considered a full-time student and keeping her financial aid in order. She researched the university’s policy on financial aid for summer courses and convinced her advisor in international relations and politics to approve her taking classes at a university near home. This kept her graduation plans on track. She ended that semester with a solid GPA.

Her mental health remained far from stable. She feigned stability as best she could, so as not to arouse concern from professors and administrators, but in fact she’d grown more ashamed and despondent. She spent the majority of her free time sleeping, unconsciousness often being the only way she could bear to be around herself. She didn’t socialize. The friend who had called 911 worried that Tahirah resented her and kept her distance. Michelle, her dorm mate, was kept frustratingly unaware of all that had happened. Tahirah had been too scared to tell her; what if Michelle would want to get rid of her too? And she shared with her family as little information as possible. They had enough to worry about.

Dr. H was beyond irritated; to her, Tahirah had been “punished for depression.” Tahirah disagreed: it was her own fault. It was her own fault she was sick and her own fault she wasn’t getting better. It would take a long time, but eventually she’d recognize that her illnesses weren’t the problem. Those could be managed. But the stigma that came with them—the discomfort that mental illness evoked in others and the complex measures that people took to distance themselves from those feelings—was beyond her control. This was the real problem.

Tahirah Alexander Green is the author of one of the essays in the book Writing Away the Stigma.

What is the magic ingredient in the “T” of AOT? Reflections on a site visit to the “best” AOT in America

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Morning Zen Guest Blog Post ~ Dennis Embry

Three times, I’ve paid my own way to be part of the listening group of diverse people on the issue of assisted outcome patient treatment, or AOT as it is widely known. As a scientist with multiple practices and programs on the National Registry of Evidence-Based Programs and Practices (NREPP), I advised the Treatment Advocacy Center on how best to present their application on AOT to NREPP, as part of my collegial and moral responsibility to improve outcomes and wellbeing of persons with a serious mental illness. As a clinician who has worked with several psychiatric facilities, juvenile courts, and drug courts, I have seen a fair number of court-ordered treatments. I also have the experience as a young adult having to petition the courts for involuntary commitment of my parents. I’ve witnessed the good, the in-between and bad of court-ordered treatments. Recently, I saw one of the best AOT implementation that is an excellent yardstick and baseline for how to do AOT right, which is important because the current proposed legislation, funding and thinking about AOT by its advocates and policy makers is likely to result in a Congressional victory but community failure—all from good intentions. As my Quaker saying goes, “Beware of Good Intentions.”

Treatment Advocacy Center (the people who hold the NREPP title for Assisted Outpatient Treatment or AOT) recommended the AOT program of Butler County as the best in the country. I was delighted to visit Hamilton, Ohio, which is the county seat of Butler County. I believe they are right, based on my observations; it was easy to see why during the visit that this Ohio site might be the beacon for how AOT should be replicated throughout America, recalling the saying: “So goes Ohio, goes the country.” 

What tickles me is that the entirety of Ohio is also leading the way nationally in the implementation of arguably the best early universal prevention strategy protecting against the developmental trajectory of serious mental, emotional, and behavioral disorders cited in the 2009 Institute of Medicine Report [1]: The PAX Good Behavior Game (http://bit.ly/NREPP).  What was most interesting to me was how much was silently shared in the procedures of the Butler County AOT program and the prevention program in about 300 schools in Ohio, including just prevention sites just starting in Butler County.  More about the similarities between AOT and the prevention strategies, later.

Consider the question of what makes AOT work? Is the power of coercion? Is the treatment itself? Something else or in-between?

Unless you’ve worked with very acutely mentally ill people, it’s hard to understand what is happening to them from their perspective. It is much like the famous Shakespearean quote: “In truth, there is madness; and in madness, there is truth.”

For many in acute, serious mental illnesses, there is an utter sense of powerlessness or omnipotent sense of power to mask the deep sense of powerlessness or flip-flopping versions of both, coupled with overwhelming perceived threats from God knows what for the afflicted persons. This is not a good combination of mental states for human wellbeing. An example from my experience with an acute ward illustrates.

A colleague, a wonderful charge nurse, arrived for her duty for the locked psychiatric ward. Upon opening the door, she heard terrible screaming from one of the rooms, and rushed to that room. Upon entering, the patient was repeatedly screaming at the top of his lungs, “You’re hurting me…get off of me.” Five orderlies and security people were holding him down in every way possible that would evoke absolute fear in anyone.  The nurse took immediate charge with a firm order for the orderly and security people: “Get off him now.” She immediately knelt and gently touched the terrified man, speaking to him as softly as a mother to a child. “(Name), if had five men trying to hold me down, I’d be terrified too. They are not holding you now. I can’t have you yelling, as it scares the other patients. We can talk about this in the room, or we can walk and talk in the hallway. Which would be best for you?”  The man began to breathe more regularly, with less evident panic. Then he said, “Walk and talk.”

So how was this crises calmed? 

First, the nurse made a thoughtful appraisal and recognition of what the patient was likely feeling in a caring way (a well documented therapeutic skill); she expressed empathy concretely to the event (another proven therapeutic skill); and she dramatically reduced the possibilities of perceived force and coercion that evoke terror, fear, and counter aggression (yet another well-documented treatment skill).

Second, she offered the patient equivalent choices to give back locus of control to the patient. Third, she reinforced the patient’s actions that evidenced increasing steps toward self-regulation. Most of these small strategies are what my colleagues and I call, “evidence-based kernels” [2], which are the smallest scientifically proven unit of behavioral influence.

Third, she “de-escalated” the trajectory by herself actually de-escalating at the stimuli and not use anything that likely be perceived as coercion (and yes, this is also well proven but rarely used because of fear of “losing control” by the therapeutic staff who use more control because of their own fear or psychological inflexibility that the patient has an authentic fear or terror from their perspective).

The Evidence-Based Kernels she used are not programs, though potent evidence-based programs inevitably contain evidence-based kernels as active ingredients [3]. Such kernels tend to produce rapid, measurable effects and are easy to learn and use. Often, kernels can be found in successful cultural practices, which have been selected by their consequences as being effective without clear thought of what we would call experimental designs [4]. For example, any reasonably competent teacher, parent or grandparent around the world uses what the nurse did, and that “kernel” is called offering equivalent choice. When the child has to go outside when it is cold, a wise adult will ask but not tell the child something like: “Do you want to wear your red sweater or your green hoodie.” How did the adult “learn” to use equivalent choice? By learning from the consequence: offering choice dramatically improves compliance by the children; whereas telling the child exactly what to put on causes a tantrum. This same principle was hugely evident in every case we saw in Hamilton, by the wonderful Magistrate—supported both by the “prosecutor” and the “defense” counsel.

What makes the Butler County AOT effort work?
Throughout each case that day, the court team worked hard at scaffolding the patients’ sense locus of control in gentle ways. There were no threats, though the excellent staff occasionally voiced their “concerns”, about possible choices or situations. There were Socratic “bracketing” questions designed to elicit the patients’ motivations and understandings to get better. Again, this a classic use of good teaching and therapeutic skills.  This was most evident in one particular case, involving a patient who had a history of swallowing sharp objects with some serious medical consequences. The Magistrate asked what might happen if the patient did X or Y, gently, but seriously guiding the patient’s to think through rather than act impulsively. Again, this was in service of creating self-regulation and practiced locus of control by the patient and not threats or coercion.

Another evidence-based kernel we witnessed is something called, “a positive debrief.” When children or adults make a mistake, people in authority often engage in a confrontational drilling of “why did you do that ___(awful thing)?”  This confrontational approach is often counter-productive, yielding things like “I don’t know” or reactive anger because of perceived threats. A positive debrief probes, “How did you do that _______ (positive) thing?”  The ensuing interaction helps the patient develop a narration of successful problem solving and mindfulness that can be self-reinforcing and recruit social reinforcement from others.

Wearing my scientist-clinician hat, I was heartened by what I saw. Many of the principles and actions were straight out of the literature on drug courts. The judge and staff freely acknowledge that later at dinner, and praised their drug court training, which they applied to the AOT process. Just like the Drug Court experience, one has to select members of the team carefully, and “hanging” judges and court staff probably not apply.

This was the best AOT ostensibly in the land, and I can imagine terrible ones—just as I have seen bad drug courts. Clearly this site does and will likely help the seriously mentally ill people we saw get better.

Almost all of the patients on that day also presented with drug and alcohol problems co-morbid with their mental illness, which complicates the success. It is alcohol and drug problems that predict a much greater risk of violence to self and others, not the major mental illness alone. The Butler County program seemed lite on alcohol and drug treatment strategies documented to increase sustained sobriety among folks with major or severe mental illnesses. What could they use for drug treatment for seriously mentally ill persons who often what some psychiatrists call “anosognosia” (a fancier new name, which used to be called a “lack of insight” in psychodynamic approaches)? Substance abuse specialists traditionally call the same thing, “denial.” Traditional 12-step approaches are not terribly effective among folks with serious mental illness, but a brilliant, simple random contingency management protocol called the “fish bowl” or “prize bowl” for being clean and engaging in recovery related behaviors [5-11] is probably the single most proven drug treatment strategy so far ever studied by the National Institute on Drug Abuse. It is also the most cost effective drug treatment protocol, which can be implemented by non-treatment staff—especially important for underserved or resourced communities.

I noticed that many clients were not appearing with family AND friends, quite unlike Drug Courts. This seems unfortunate, as the National Institutes of Health have funded research on spectacularly effective strategies that reduce relapse or reoccurrence in both addictions and co-occurring mental health problems called Community Reinforcement and Family Training (CRAFT) [12-16], which also has application for special populations. Useful information can be found at, http://archives.drugabuse.gov/TXManuals/CRA/CRA1.html

Some patients also had obvious learning impairments, as well as nutritional and other self-care problems that impact recovery and wellness. Still, there was profound hope in the room. The team clearly understood that the assisted part of outpatient treatment was not about command, control, and coercion. The team all worked to evoke and reinforce self-regulatory skills in the cases we observed, which was moving and assuring. Careful training, not unlike the best Drug Court training, will be required to make this work well across America.

So how much does it cost to run high quality AOT?
As good as Butler County was, there is room to make even this star child of AOT better with other evidence-based kernels that should be standard issue. This is wise to consider, because the New York State implementation of AOT involved a bit more than $160 million in additional treatment funds to achieve their results, because of historic cuts in the state. There is no free lunch here with AOT, as the “T” is the most important part of AOT. 

I did mental math during the luncheon with all the community players for the Butler County AOT. Everybody important in Butler Counter was there, and they had put substantial local resources in place for this amazing program. They had a well run inpatient facility at the community hospital, with a locked option. They had incredible step-down programs and housing options. They invested serious funds for the local staffing and funding for the court itself, which had to be at least $400-$500K per year, and I bet it is more because Ohio has high levels of expenditures for behavioral health in communities compared to most. They had housing, psychiatrists, therapists, counselors and a host of services. They were not serving hundreds of patients per month; they were serving six or so cases we saw just that day. In a year, it must be something like 30-50 at best. There must be many more people who could benefit in Butler County than 30-50 people, but that’s probably about all the resources they have.

Put all this into context. Butler County Ohio has population 371,000, about 0.1% of the population of the United States. To do what Butler County Ohio is dong so well would require non-trivial resources, especially since Butler County’s efforts is only covering a percentage of folks who could benefit by AOT. The best financial on the cost of doing a population-level upgrade of systems to support AOT comes from the State of New York, which spent about $8 per man, woman and child in the state. New York has a population of about 19,700,000 people. Using NY data, that would suggest the real cost of covering ALL of the people who might need AOT in Butler County Ohio is about $3 million per year. To do the same every America state, DC, and community would require a total commitment of from the Federal government of conservatively $2.6 billion of NEW money per year. Nowhere are the proponents signing on to provide nearly $3 billion (and likely more) in new mental health treatment money that will be required to rebuild the mental health and substance abuse treatment infrastructure.

The proponents of AOT promote it as THE way to end waiting for beds for serious mentally ill. That is a noble message, but are they really prepared to spend nearly $3 billion new money to reduce the burden of serious mental illness? I would wager a $100 bill that the answer is no; the new money proposed is more like $50 million. It will probably take way more than $3 billion in new money, because most states have gutted their addictions and treatment programs in preference for depending on corrections. Cutting substance abuse treatment and prevention in the name of treating serious mental illness is a logical as cutting off patients’ legs to save their arms.

What else is needed to make AOT work well?
I will skip the notion of “programs” and focus on small units of behavioral influence (evidence-based kernel). These kernels have huge advantages in dissemination because of low cost, ease of training, and rapid results [2, 4, 17-19], as well as expanding the sense of locus of control in the patients’ minds that appears to be critical in long-term positive outcomes in longitudinal studies funded by NIMH [20]. Contrary to popular belief, this AOT star site spent virtually no time at all on psychotropic medication compliance in the court sessions we observed. Rather, the emphasis was all on drawing out and reinforcing the patients’ self-efficacy—with a few fence posts gently noted.

Now, what to add to improve patients’ locus of control and self-regulation for sustained recovery or quality of life in the context of AOT or any other therapeutic “system” to help folks with serious mental illness.  The literature on Drug Courts and evidence-based kernels (i.e., the smallest scientifically proven units of behavioral influence) offer rich but not costly opportunities to improve the outcomes and processes we observed. My specific thoughts fit into what my colleagues call and I call, Nurturing Environments [19] or the “Nurture Effect”: a) Rich reinforcement of prosocial behavior, b) limit exposure to problematic behaviors, c) reduce toxic influences, and d) increase psychological flexibility. Some suggestions follow around each arm of the Nurturing Environments meta-theory to facilitate both locus of control and self-regulation.

Rich reinforcement of pro-social behavior
A cardinal feature of serious mental illness is withdrawal from prosocial interactions with others, or increased anti-social behavior, or yo-yoing between the two. Coercion by other humans has well documented limits in increasing prosocial behavior among humans—even among mentally ill persons [21-28], in part because humans have been the primary predators of humans since the invention of stone weapons. So how do well-run Drug Courts that compel addiction treatment seem to work? Not by throwing addicts into jail till they get clean or submit to “authority”. Rather, well run Drug Courts use a powerful reward system studied by the National Institute on Drug Abuse called the “Fish or Prize Bowl” [5], a particularly powerful strategy for folks with serious mental illness [29-32].  With the “Fish or Prize Bowl,” individuals draw random rewards for engaging in verifiable therapeutically helpful behaviors including sobriety and treatment compliance. You can read more about how the Fish or Prize Bowl works, and it is far more cost-effective than other strategies.  This procedure is on the National Registry of Evidence-Based Programs and Practices, with significant evidence of effectiveness for the seriously mentally ill. The book that details how to do this procedure is available for $40 on Amazon.

Now why is such reinforcement necessary? Shouldn’t people do the right thing without reinforcement, anyway? That is not hard to answer by example. First, the reward centers of the human brain is highly involved in major mental illnesses such a schizophrenia, which why most of the tobacco products are purchased by chronically or severely mentally ill —in case readers have not noticed [33]. Second, using contingency management (direct reinforcement) for tobacco cessation is effective for seriously mentally ill [34, 35] as well as hard drug use (e.g. cocaine, meth) by seriously mentally ill [36-38].

Reduce exposure to problematic behavior
Mental health worsens when children, youth or adults are exposed to problematic human behavior. What might such problematic human behaviors be? Chronic or acute exposure to violence, abuse, aggression, bullying, uncertainty, untrustworthy humans, homelessness, or other actions that signal uncertainty or lack of safety. Such exposure can trigger epigenetic changes designed to deal with the most significant predator of human beings: other humans. While one might assume that effective treatment is just forbidding exposure to such problems, real healing and recovery involves sustained exposure and engagement in positive or nurturing environments [39-41]. 

Humans do not thrive on psychotropic medications alone: folks with serious mental illness—just like virtually all humans—need a safe bed at night, decent food, good friends, a sense of family, physical activity, a bit of daily fun, a sense of purpose, and sense of personal agency. It was clear that the Magistrate in Hamilton, Ohio, and the teams in her court absolutely understood this human necessity, and they all spent time to assure that these human necessities were being increased for the individuals appearing.

Reduce Toxic Influences
Toxic influences abounded among the court-supervised patients before the Magistrate that day. Their toxic influences can play havoc with the biochemistry and epigenetics of mental and behavioral wellbeing, potentially undermining the effectiveness of the most treasured therapies. One common toxic influence was profound economic stress, lack of safety, and uncertainty. That, in turn, triggers cascades of adaptive chemistries selected during the long course of mammalian evolution. That evolutionary mechanism, in turn, makes people more likely to take an immediate reward such as stealing, sex, drugs, high-fat food, tobacco, alcohol, violence, etc. That evolutionary principle can be bluntly stated: under conditions of chronic perceived uncertainty, take the money and run—whatever the “money” is.

The Magistrate was sensitive to these toxic influences, and so were members of her team. This was a relatively small community of 60,000 people. In Hamilton and Butler County Ohio, people know people who know people—making things more possible. One must not underestimate the human resources present in or projected into that room, assembled by passion, connections and a significant commitment of local money. Such supports might not happen in city of a million people where I live, or in Baltimore where we’ve worked in the desperately violent and impoverished neighborhoods, or amongst very rural or frontier communities we’ve worked with virtually no or few resources nearby like Wyoming, remote communities in Northern Manitoba, or at the bottom of the Grand Canyon. Remember, the State of New York appropriated more than $160 million to sew up the decay in social service and supports infrastructure for court-supervised treatment. With no resources to reduce toxic influences among the patients, AOT is neutered. To my mind, this is major reason why the Cochrane Review finds no consistent results for AOT [42]: it can be assisted (read compulsory) but with a very tiny “t” (treatment), yielding no change. In Hamilton, their connections resulted in real local money and recruited solid talent for a big “T”.

Increase Psychological Flexibility
Serious mental illness is often framed by rigid, tightly defended thinking—not only by the patient but also by the family, community and yes, even by the clinicians treating these disorders. I notice this among family and providers when they land hard accent on the diagnosis, “XYZ HAS ABC psychiatric disorder.” The emphasis on HAS sounds very much like a terminal cancer diagnosis, with a slogan above the entrance of the treatment program that says, “Abandon All Hope By Ye Who Enter Here.”

I was struck by the flexible thinking of the Butler County team; all believed that the people they were working could have better lives, even productive lives that might include the word that some think is impossible—recovery of a good life though it might be different than their previous lives. The scientific literature endorses the notion that context yields very different trajectories that can include “recovery” from a mental illness. The National Institute of Mental Health (NIMH) has funded amazing longitudinal research on the fact that persons with serious mental illness (bipolar, schizophrenia, major depression) can have prolonged periods of recovery [43-49], and interestingly these studies show that the presumptive cornerstone of recover—medication compliance—is not the key predictor [49]. Some randomized control longitudinal studies suggest that specific psychological strategies that help patients develop psychological flexibility about their intrusive thoughts is critical to sustained reductions in reoccurrence of psychosis [50, 51]. 

Using the health-care bill to learn what makes AOT work is as important as enabling AOT
The discussion about Assisted Outpatient Therapy (AOT) needs to be informed by the actual science. Yes, AOT is now on the National Registry of Evidence-Base Programs and Practices, but with weak scores on quality of research for good reason. I cautioned its proponents about that weakness, based on the independent review by the Cochrane Collaborative of AOT, also called CCT (Compulsory Community Treatment). That review states [52]:  “CCT (AOT) was no more likely to result in better service use, social functioning, mental state, or quality of life compared with either standard voluntary or supervised care. However, people receiving CCT were less likely to be victims of crime than those on voluntary care. Further research is indicated into the effects of different types of CCT as these results are based on 3 relatively small trials.”

There is much Kabuki theatre and political posturing regarding AOT, on both sides of the issue. Yes, it can be a useful tool. Is AOT the proven strategy to reduce the horrific burden of serious mental illness in America? Not by current, gold-standard, scientific research. Could it have significant benefits, if the active ingredients for its success are refined and developed? Absolutely, which is why it is important to have a robust, high-quality scientific evaluation that would be true of any disorder or disease that involves life, death, or serious disability. 

Some have claimed that it’s AOT or homelessness, death or other horrors. That’s a rhetorical device, not a fact. The truth is there are other evidence-based practices of merit for dealing with the denial or lack of insight (aka anosognosia) common to mental illness and addictions. Consider a few options that may be as good, better and less expensive than AOT:

  • Mental Health Courts have far more peer-reviewed experimental, scientific research than Assisted Outpatient Treatment and may be superior in the limited potential comparison studies [53]. 
  • The “fish bowl” or ‘prize bowl” contingency management approach is extraordinarily effective in getting and completing treatment, even for the most seriously addicted and homeless who often have serious mental illnesses [29-32, 40, 54, 55].
  • How can families get family members into treatment who are in complete denial and resistant (i.e., suffering from anosognosia)? Well one strategy with a great deal of evidence is called, Community Reinforcement and Family Training or CRAFT [13-16, 56, 57] that has been highly successful with addictions.

Sensible elected officials or policy makers, advocacy groups, and concerned families should demand that any redirection of significant federal funds to one approach for the treatment of serious mental illness ought to be vigorously evaluated, especially in the context of comparative effectiveness trials of different options that might be superior, more cost-effective, or both as is the case in Assisted Outpatient Treatment—which is the same standard that I am held to when conducting studies to prevent mental, emotional, and behavioral disorders in the first place. This comparative effectiveness evaluation would not be expensive to conduct, nor unethical, since the effectiveness of AOT is not well established by peer-reviewed studies. Specifically, the enabling legislation must include a randomized wait-list control, comparative effective studies to determine what related federal funding and policies have the most benefits for children, youth and adults afflicted by major mental illnesses.

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enbry

Dennis Embry, President/Senior Scientist at PAXIS Institute – Dennis D. Embry is a prominent prevention scientist in the United States and Canada, trained as clinician and developmental and child psychologist. He is president/senior scientist at PAXIS Institute in Tucson and co-investigator at Johns Hopkins University and the Manitoba Centre for Health Policy. His work and that of colleagues cited in 2009 the Institute of Medicine Report on The Prevention of Mental, Emotional, and Behavioral Disorders Among Young People. Clinically his work has focused on children and adults with serious mental illnesses. He was responsible for drafting of the letter signed by  23 scientists, who collectively represent scores of randomized prevention trials of mental illnesses published in leading scientific journals. In March 2014, his work and the work of several signatories was featured in a Prime-TV special on the Canadian Broadcast Corporation on the prevention of mental illnesses among children—which have become epidemic in North America. Dr. Embry serves on the Children's Mental Health Network Advisory Council. 

References
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2. Embry, D.D. and A. Biglan, Evidence-Based Kernels: Fundamental Units of Behavioral Influence. Clinical Child & Family Psychology Review, 2008. 11(3): p. 75-113.

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11. Rash, C.J., S.M. Alessi, and N.M. Petry, Cocaine abusers with and without alcohol dependence respond equally well to contingency management treatments. Experimental and Clinical Psychopharmacology, 2008. 16(4): p. 275-281.

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13. Meyers, R.J., H.G. Roozen, and J.E. Smith, The community reinforcement approach: An update of the evidence. Alcohol Research & Health, 2011. 33(4): p. 380-388.

14. Slesnick, N., et al., Treatment outcome for street-living, homeless youth. Addictive Behaviors, 2007. 32(6): p. 1237-1251.

15. Godley, S.H., et al., Adolescent Community Reinforcement Approach (A-CRA), in Substance abuse treatment for youth and adults: Clinician's guide to evidence-base practice, D.W.S.A. Rubin, Editor. 2009, John Wiley & Sons Inc: Hoboken, NJ, US. p. 109-201.

16. Godley, S.H., et al., A large‐scale dissemination and implementation model for evidence‐based treatment and continuing care. Clinical Psychology: Science and Practice, 2011. 18(1): p. 67-83.

17. Embry, D.D., et al. Best Intentions are Not Enough: Techniques for Using Research and Data to Develop New Evidence-Informed Prevention Programs. Emphasizing Evidence-Based Programs for Children and Youth: An Examination of Policy Issues and Practice Dilemmas Across Federal Initiatives., 2013. 26.

18. Biglan, A. and D.D. Embry, A Framework for Intentional Cultural Change. Journal of Contextual Behavioral Science, 2013. 2(3-4).

19. Biglan, A., et al., The critical role of nurturing environments for promoting human well-being. American Psychologist, 2012. 67(4): p. 257-271.

20. Harrow, M. and T.H. Jobe, How frequent is chronic multiyear delusional activity and recovery in schizophrenia: a 20-year multi-follow-up. Schizophr Bull, 2010. 36(1): p. 192-204.

21. Longinaker, N. and M. Terplan, Effect of criminal justice mandate on drug treatment completion in women. The American Journal of Drug and Alcohol Abuse, 2014. 40(3): p. 192-199.

22. Øhlenschlæger, J., et al., Effect of integrated treatment on the use of coercive measures in first-episode schizophrenia-spectrum disorder. A randomized clinical trial. International Journal of Law and Psychiatry, 2008. 31(1): p. 72-76.

23. Phelan, J.C., et al., Effectiveness and outcomes of assisted outpatient treatment in New York State. Psychiatric Services, 2010. 61(2): p. 137-143.

24. Putkonen, A., et al., Cluster-randomized controlled trial of reducing seclusion and restraint in secured care of men with schizophrenia. Psychiatric Services, 2013. 64(9): p. 850-855.

25. Steinert, T., et al., Subjective distress after seclusion or mechanical restraint: One-year follow-up of a randomized controlled study. Psychiatric Services, 2013. 64(10): p. 1012-1017.

26. Theodoridou, A., et al., Therapeutic relationship in the context of perceived coercion in a psychiatric population. Psychiatry Research, 2012. 200(2-3): p. 939-944.

27. Thornicroft, G., et al., Clinical outcomes of Joint Crisis Plans to reduce compulsory treatment for people with psychosis: A randomised controlled trial. The Lancet, 2013. 381(9878): p. 1634-1641.

28. Wykes, T., et al., Working alliance and its relationship to outcomes in a randomized controlled trial (RCT) of antipsychotic medication. BMC Psychiatry, 2013. 13.

29. Tidey, J.W., Using incentives to reduce substance use and other health risk behaviors among people with serious mental illness. Preventive Medicine: An International Journal Devoted to Practice and Theory, 2012. 55(Suppl): p. S54-S60.

30. Angelo, F.N., et al., Predictors of stimulant abuse treatment outcomes in severely mentally ill outpatients. Drug Alcohol Depend, 2013. 131(1-2): p. 162-5.

31. McDonell, M.G., et al., Randomized controlled trial of contingency management for stimulant use in community mental health patients with serious mental illness. The American Journal of Psychiatry, 2013. 170(1): p. 94-101.

32. Weiss, R.D., Contingency management for patients with serious mental illness and stimulant dependence. The American Journal of Psychiatry, 2013. 170(1): p. 6-8.

33. Lasser, K., et al., Smoking and mental illness: A population-based prevalence study. JAMA, 2000. 284(20): p. 2606-10.

34. Roll, J.M., et al., Use of monetary reinforcement to reduce the cigarette smoking of persons with schizophrenia: A feasibility study. Experimental & Clinical Psychopharmacology, 1998. 6(2): p. 157-161.

35. Tidey, J.W., et al., Effects of contingency management and bupropion on cigarette smoking in smokers with schizophrenia. Psychopharmacology (Berl), 2011. 217(2): p. 279-87.

36. Roll, J.M., S.T. Chermack and J.E. Chudzynski, Investigating the use of contingency management in the treatment of cocaine abuse among individuals with schizophrenia: a feasibility study. Psychiatry Res, 2004. 125(1): p. 61-4.

37. Tenhula, W.N., M.E. Bennett, and J.E.S. Kinnaman, Behavioral treatment of substance abuse in schizophrenia. Journal of Clinical Psychology, 2009. 65(8): p. 831-841.

38. Lubman, D.I., J.A. King, and D.J. Castle, Treating comorbid substance use disorders in schizophrenia. Int Rev Psychiatry, 2010. 22(2): p. 191-201.

39. Chien, W.T. and D.R. Thompson, An RCT with three-year follow-up of peer support groups for Chinese families of persons with schizophrenia. Psychiatr Serv, 2013. 64(10): p. 997-1005.

40. Cook, J.A., et al., Results of a randomized controlled trial of mental illness self-management using Wellness Recovery Action Planning. Schizophr Bull, 2012. 38(4): p. 881-91.

41. Glick, I.D., A.H. Stekoll, and S. Hays, The role of the family and improvement in treatment maintenance, adherence, and outcome for schizophrenia. J Clin Psychopharmacol, 2011. 31(1): p. 82-5.

42. Kisely, S.R., L.A. Campbell, and N.J. Preston, Compulsory community and involuntary outpatient treatment for people with severe mental disorders. Cochrane Database Syst Rev, 2011(2): p. Cd004408.

43. Goldberg, J.F. and M. Harrow, A 15‐year prospective follow‐up of bipolar affective disorders: Comparisons with unipolar nonpsychotic depression. 2011, Wiley-Blackwell Publishing Ltd.: United Kingdom. p. 155-163.

44. Goldberg, J.F. and M. Harrow, Consistency of remission and outcome in bipolar and unipolar mood disorders: A 10-year prospective follow-up. 2004, Elsevier Science: Netherlands. p. 123-131.

45. Goldberg, J.F. and M. Harrow, Subjective life satisfaction and objective functional outcome in bipolar and unipolar mood disorders: A longitudinal analysis. 2005, Elsevier Science: Netherlands. p. 79-89.

46. Harrow, M., et al., Ten-year outcome: Patients with schizoaffective disorders, schizophrenia, affective disorders and mood-incongruent psychotic symptoms. 2000, Royal College of Psychiatrists: United Kingdom. p. 421-426.

47. Harrow, M., et al., Do patients with schizophrenia ever show periods of recovery? A 15-year multi-follow-up study. Schizophrenia Bulletin, 2005. 31(3): p. 723-734.

48. Harrow, M., B.G. Hansford, and E.B. Astrachan-Fletcher, Locus of control: Relation to schizophrenia, to recovery, and to depression and psychosis—A 15-year longitudinal study. 2009, Elsevier Science: Netherlands. p. 186-192.

49. Harrow, M. and T.H. Jobe, Does long-term treatment of schizophrenia with antipsychotic medications facilitate recovery? Schizophrenia Bulletin, 2013. 39(5): p. 962-965.

50. Bach, P. and S.C. Hayes, The use of acceptance and commitment therapy to prevent the rehospitalization of psychotic patients: A randomized controlled trial. Journal of Consulting & Clinical Psychology, 2002. 70(5): p. 1129-1139.

51. Bach, P., S.C. Hayes, and R. Gallop, Long-Term Effects of Brief Acceptance and Commitment Therapy for Psychosis. Behav Modif, 2011.

52. Kisely, S.R. and L.A. Campbell, Compulsory community and involuntary outpatient treatment for people with severe mental disorders. Schizophr Bull, 2015. 41(3): p. 542-3.

53. Munetz, M.R., et al., Mental health court and assisted outpatient treatment: Perceived coercion, procedural justice, and program impact. Psychiatric Services, 2014. 65(3): p. 352-358.

54. Sigmon, S.C. and S.T. Higgins, Voucher-based contingent reinforcement of marijuana abstinence among individuals with serious mental illness. Journal of Substance Abuse Treatment, 2006. 30(4): p. 291-295.

55. McDonell, M.G., et al., A pilot study of the accuracy of onsite immunoassay urinalysis of illicit drug use in seriously mentally ill outpatients. Am J Drug Alcohol Abuse, 2011. 37(2): p. 137-40.

56. Manuel, J.K., et al., Community Reinforcement and Family Training: A pilot comparison of group and self-directed delivery. Journal of Substance Abuse Treatment, 2012. 43(1): p. 129-136.

57. Meyers, R.J., M. Villanueva, and J.E. Smith, The Community Reinforcement Approach: History and New Directions. Journal of Cognitive Psychotherapy, 2005. 19(3): p. 247-260.


[1] Dr. Dennis Embry is a leading prevention scientist focused on mental, emotional, and behavioral disorders. He retired from clinical practice to devote full time energy to prevention and early intervention research, development and dissemination.

Don’t call me an adult ally, I’m a parent. Always was, always will be.

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Morning Zen Guest blogger ~ Lisa Lambert 

One day, 17 years and 364 days after his or her birth, your child goes to bed and wakes up the next morning a legal adult. You have a party (okay, maybe just a cake), give presents and feel a flutter of anxiety in your stomach. For many young people, being 18 doesn’t mean much these days. They can vote, sign a contract and register for the draft. They have already been able to drive a car, see an NR-17 movie or consent to sex for at least a year. They have to wait until age 21 to legally drink, purchase a firearm or adopt a child. But if your son or daughter has mental health needs, when they turn 18 you are relegated to a special category. Now you are an adult ally.

Yes, that’s right. When your child went to bed, still age 17, you were a parent. But when they woke up as a young adult, your status changed to adult ally. Or in some mental health circles, that is what the current thinking is. Adult allies, the definition says, partner with young adults, view them as valuable resources and ensure they can speak up and participate.

However, parents are parents and have a completely unique role in their children’s lives. It’s part of parenting to try to balance how we support, interfere, teach, back away or say we are proud, disappointed or relieved. Sometimes we get it right and sometimes we don’t. But that’s part of it, too – learning, adjusting, making mistakes and doing it better. No one gets a handbook as if your child is an appliance; there’s an art to parenting that simply cannot be captured precisely.

Sometimes it’s your job as a parent to be the “not-ally.” Instead of allying, you disagree with your son or daughter. It’s learning how to do it while respecting their right to make mistakes and being clear that you disagree with their decision or position, but still love them. That’s the trick. Like all skills, this takes practice.

But there is another reason to choose words that describe the parent role carefully. Parents know how they feel when certain terms are used. Some words make us feel respected while others feel derogatory. Some terms take away power while others make us feel powerful. Describing a family as dysfunctional, for instance, robs parents of their strengths. They feel judged, unworthy and unable to change that perception. On the other hand, when a family is described as a “resource” for their child or a “strong” family, they feel empowered and valued. Unfortunately, lumping parents into a category of adult allies shifts us out of a unique role and into one that limits us.

Not long ago, I told a colleague of mine, who has children in elementary school, about this idea that parents become an adult ally. She listened to me in disbelief and said, “I put my heart, soul, time and money into my children in a way that only parents can. If someone told me that I am suddenly not a parent, but an adult ally, I would be pissed.” When she heard this term she felt it lessened her role, not enhanced it.

There were days and weeks while my son was transitioning to young adulthood (we are on the far side of that now) when I would have happily relinquished my role as a parent to become an adult ally. It would have been far less demanding and a much clearer role. But what he needed was a parent, someone who had known him forever and knew his strengths and foibles. I would say things like, “That sounds great. You are a hands-on learner and this would work for you.” I’d also say things like, “That makes me worried. Sounds like you are putting yourself in harm’s way. ” Sometimes he’d agree and other times he would think I was wrong. But we’d talk it through together, because that’s our mother son relationship. Sometimes the conversations were heated or exhausting but they worked for us.

When providers, emergency services and mental health providers ignore parents of young adults, it can send a message. When adult mental health systems exclude family involvement, that message is even stronger. The message I hear when this happens is, We don’t value parents and family involvement. If I am hearing it, my son or daughter probably is as well. Sure, there are privacy concerns and it’s important that young adults learn to take the lead in treatment and life decisions. But they may not want to do that every time. Sometimes we all need a team and parents can be valuable team members.

Other adults in a young person’s life should be encouraged to be an ally. The Free Child Project encourages adults to be “allies to young people when they work with, connect, partner, and unite with young people in personal relationships.” They encourage adults to take on a partnership and support role and offer guidelines to do it well. But parents are not just any old adult. They are the only ones who can do all the things only parents can do. Why would we want to prune their role and stuff it into this thing called adult ally?

There has been a lot of recent attention, research and thinking about young people who are transitioning to adulthood. We understand better that the prefrontal cortex of the brain doesn’t fully mature until the mid-20s. We now understand that transition is a unique time between adolescence and adulthood. And so, the thinking goes, if this is a unique time, then parents should behave in unique ways. But is that true? Should we just be version 2.0 or 15.0 of the parent we’ve always been?

I am not saying it’s easy to figure out your role when your child turns 18. It’s not. But it doesn’t easily fit into a slot either. Sometimes you are an ally and sometimes you’re the one saying, “Wait a minute here. “ Sometimes you are amazed and astounded at what your child knows and sometimes you shake your head and say, “Really, that’s your decision? Okaaaaaay.” We used to call this a generational gap but it’s more like an experience gap. Our experiences change how we look at things. It can make us cautious or cynical. Youth can have a fresh perspective. We sometimes have to remind ourselves how wonderful that is.

There is room at the table for many voices. Those voices change in tone, in volume and in how often they speak. Transition to adulthood is a time when that happens. As parents, we learn to be less the authority and more the coach or mentor. Sometimes we are not either one but simply the observer until we are asked to participate. That’s okay; that’s what all parents have to learn. What’s different for parents of young people with emotional and behavioral challenges is that we have to learn to set our anxiety or need to impact the outcome to one side and have faith our son or daughter will be okay. My father used to say, “You can’t learn to ice skate without falling down.” We need to believe it’s okay for them to fall down and just be there, when needed, after the fall. That’s what parents are for. 

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lambertLisa Lambert, Executive Director, Parent/Professional Advocacy League (PPAL) and Children's Mental Health Network Advisory Council member – Lisa Lambert is the executive director of Parent/Professional Advocacy League (PPAL), a statewide, family-run, grassroots nonprofit organization based in Boston. Lisa serves on a number of committees in Massachusetts as well as the Building Bridges Initiative Youth and Family Partnership workgroup. She has been instrumental in working with local and national media to highlight the concerns of families and youth. She is dedicated to ensuring that family voice is included in every state and national conversation about the policies, practices or services that impact them.

Posted on the PPAL website, May 3

White Rabbit

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Morning Zen Guest Blog Post ~ Matthew Newton

“It’s terrible here at night,” Sesha said. She was sitting across the table from me in the psychiatric ward at Forbes Regional Hospital, dressed in a T-shirt and sweatpants, her make-up washed away. We were alone in the day room, late November casting long rectangles of sunlight across the white tile floor. Behind us was a darkened television set, mounted on a metal support arm that reached out from the wall; puzzles and board games were stacked high on a nearby shelf.

It was Thanksgiving 1992. I was fifteen years old and in the tenth grade. Sesha was fourteen. Out in the hallway, prepackaged meals of turkey, stuffing, mashed potatoes, and cranberry sauce—all shrink-wrapped on plastic trays filed neatly in a stainless steel cart—were being delivered to patients. A male orderly in scrubs lumbered down the corridor, wheeling the cart from room to room, the unmistakable scent of hospital food strong in the air. Sesha still didn’t have much of an appetite, so we sat and talked while the other patients ate quietly in their rooms.

“What do you mean by ‘terrible’?” I asked, worried.

“That guy at the desk? Scott? He hits on all the girls here,” she said. “But he waits until late at night. He’s a pervert.” Her ponytail had come loose, so she removed the elastic band that had held it in place, and for a moment her auburn-colored hair fell to her shoulders.

“He thinks he’s attractive or something—it’s weird,” Sesha said, pulling her hair into a tight new ponytail.

“Has he hit on you?” I asked.

“Yes,” she said, as if I were a fool for asking. “But don’t worry. It’s not like I’m going to sleep with him.”

The thought hadn’t even entered my mind. At least, not until she planted it there. It was a practice she had mastered in the three months since our first kiss: sowing seeds of doubt at any opportunity. But even though I was aware of the ways she often tried to manipulate a situation, the line between fantasy and reality remained impossibly hard to determine.

Sesha and I had been together only since late August, but we had known each other for more than a year. We met in ninth grade art class, a general curriculum course taught by a woman who was rumored to have been a Playboy centerfold in the 1960s. Sesha flirted with me from the first day of class, touching my arm when we talked and whispering to me between the teacher’s lessons. We shared a similar sense of humor, dry and sarcastic, and easily fell in together. That she was smart and attractive only helped to magnify my self-consciousness each time we talked.

Sesha was from a multiracial family, part white and part Indian. Her dark, shoulder-length hair she often gathered and pulled to one side of her neck—usually the side opposite from where I sat—as she worked, exposing her full profile so I could see her lips and neckline, the curve of her jaw and the silver hoops in her pierced ears. She exuded a confidence I had never seen before, a confidence that would later evolve into a strange power over me.

I couldn’t tell if Sesha was lying about Scott, a middle-aged man with dark, close-cropped hair and wire-rimmed glasses. His particular role on the ward was unclear, but he seemed to be an administrator, someone with a background in therapy, perhaps, who had taken on the role of staff manager. My only interactions with him were when I signed in at the front desk before each visit. He had been pleasant in our limited encounters. Was he capable of making sexual advances toward a teenage girl?

“Tell me what I should do,” I said. “I can help.” My mother, who was reading a book in the waiting room outside the ward, had been doing her best to advocate for Sesha; I figured if any of this were true, maybe she could help. What worried me, of course, was Sesha’s tendency to exaggerate. Her desire to place herself at the center of the drama, whether real or imagined, was an aspect of her personality I’d never quite understood, especially considering that her life was chaotic enough on its own. Six days earlier, that chaos had pushed her into the psychiatric ward at Forbes—a move that turned out to be less the signal of an unsettled mind than a measure to establish a safe distance from her father.

***

“I can’t go home tonight,” Sesha had said. “He’ll kill me.” A strict Indian man, her father’s temper and authority loomed like a monolith over her family’s household. We were in my bedroom at my parents’ house when she said this. It was the Friday before Thanksgiving, and Sesha had ridden home with me on the bus after school. Her deep brown eyes welled with tears as she talked, mascara running in inky-black dots against her olive cheeks. In her right hand was a copy of her report card. She had received two Ds for the semester: one in science, the other in gym. She cut each class regularly, often meeting me under a quiet stairwell we had found in one of the school’s back hallways, where we would fool around or daydream about the future. Other times, it was to smoke pot on the hiking trail behind the school with some of the stoners she knew.

To Sesha’s father, a report card with failing grades was unacceptable. It didn’t fit with his image of his daughter or the distinct ideas he had for her future. As she explained it, her father expected she would graduate at the top of her class, go on to a respected four-year university—somewhere like Case Western Reserve—and then consider her options for graduate school. The details got murkier after that, but there was often talk, however serious or not, of an arranged marriage with a young man from another Indian family. It was a daunting vision. But the fact that her father had no idea of what was actually going on in her life—and what he might do if he found out—seemed to scare her the most.

“I don’t know how to explain this to him,” Sesha said, holding up her report card. Her voice was fragile, breaking apart a little at the end of each word. She was sitting on the blue carpet in my bedroom, her knees tucked tight to her chest, her back against the closet door. A miniature Chicago Bulls basketball hoop, a gift from my parents when I was in junior high, hung several feet above her head at the top of the door.

It was strange to see Sesha so upset. The only times she ever showed signs of fear were when her father came up in conversation. Though he worked long hours as a nuclear physicist at a nearby research facility, his presence in her life was constant and pervasive. Pleasing him was not necessarily something she wanted to do, but it was an obligation that colored many of her decisions. Given his own accomplished career, Sesha’s father expected academic excellence from each of his four children—three daughters and a son—and his discipline often turned physical when he was disappointed with them.

A year earlier, before we were dating but when we spent hours on the phone after school each day, Sesha had told me that her father once pushed Abeer, her younger brother, down a flight of stairs. The fall was violent and left her brother, who was in grade school at the time, with a broken arm. Sesha couldn’t remember what it was that had set her father off, but that was the point. His reactions were as unpredictable as his temper.

Since I had never met or even seen Sesha’s father, except in photographs, a certain kind of mystery surrounded him. The framed pictures in her house revealed a short, dark-skinned man with tinted glasses and a crown of thinning black hair. It was intentional, of course, that we had never met. He forbade any of his three daughters from having a boyfriend. Sesha’s mother, however, a timid but pleasant American woman, was far more lenient. Unlike her husband, she was well aware that each of her three daughters secretly had boyfriends. When I would visit Sesha after school, her mother was particularly nice to me. She would make us food and tell bad jokes as we sat around the kitchen table. I would help her carry groceries from the trunk of her Pontiac LeMans, or play video games with Abeer. It all felt extremely normal. But there was always the knowledge that the fun was temporary, a welcome but finite lull before Sesha’s father returned home.

“I’m afraid what I might do if I go home tonight,” Sesha said, wiping away tears as she looked up at me from the bedroom floor, her eyes searching, it seemed, for some sort of reaction.

“What’s that mean?” I asked, hearing a familiar tone of frustration in my voice. I wanted Sesha to be clear about what it was she was hinting at, to just come out and say it.

“You really don’t know?” she asked, sounding irritated. “Never mind then.”

I knew she was threatening suicide, or at least some type of harm to herself, if she had to go home and face her father. But I also questioned how serious she was, knowing the pleasure she took in helping a situation unravel. The last thing I wanted was to further agitate her. But I also didn’t want to play along. I had done so in the past. Not with threats of suicide, but with other issues just as serious.

Earlier that year, Sesha had told me that a varsity soccer player had raped her at a party when she was a freshman. Her account of what the boy had done was matter-of-fact, almost emotionless, and caught me by surprise. Learning that someone had done this to her drove me into a rage. The next day I confronted the boy in a hallway at school, asking him bluntly what had happened at that party. A fight broke out. Teachers quickly intervened and separated us, and as they dragged us to the principal’s office, the boy laughed at me for believing Sesha’s story, telling me I was too gullible. At the time, I ignored him. I was in the right, I assumed, because why would Sesha lie about such an awful experience? But as the months wore on, I began to question her stories and her reasons for telling them. Our relationship had proven that I was one of the few people Sesha trusted—her confidence in me often revealed in quiet, intimate moments. But that didn’t deter her from lying to me when it was convenient. So many of our conversations were like falling down a rabbit hole, the truth so obscured it seemed impossible to set any of it right in my head.

I sat on the floor next to Sesha and held her hand. The house was warm, but her fingers felt cold.

“You don’t know him,” she said about her father, her voice soft again. She reminded me that it was impossible for me to know how he would react. She was right.

Out in the kitchen, my grandmother was checking on a pot roast she had put in the oven several hours earlier. The smells of seasoned meat and roasted potatoes reminded me of when she used to cook for my sister and me when we were little, before I had problems that couldn’t be solved.

I looked at Sesha. Her eyes were red, the skin above and below her lashes tender at the edges, but she wasn’t crying anymore. Before I could say anything, she interrupted.

“I’m not going home,” she said. “I’ll kill myself if I do.”

***

“It’s probably just playful flirting,” Sesha said when I pressed her about Scott. “You shouldn’t worry.” We were walking laps around the outer edges of the ward, watching the clock as 8 p.m. approached and visiting hours came to a close.

“You would tell me if you needed me to do something, right?” I asked as we stopped outside her hospital room.

“I’m fine,” she said, softening a bit. “It’s okay here.”

We said goodbye for the night. I kissed her and we hugged for what felt like several minutes. After all she’d told me since I arrived, I was afraid to leave. But I couldn’t stay any longer, either. “Visiting hours are over for the evening,” a voice boomed from the small circular speakers in the ceiling. “Please remember to sign out at the front desk and wait for a staff member to buzz you out.”

I signed the log, scrawling my signature next to the date and time of my visit. On my way out of the ward I looked over my shoulder and saw Scott standing there motionless, his eyes fixed on the exit.

Out in the waiting room I found my mother sitting on a couch near a bank of vending machines. The other chairs and small couches were all empty; rows of fluorescent tube lights hummed loudly overhead. She looked tired but smiled when she saw me.

“How is she?” my mother asked, tucking the paperback that she had been reading into her purse.

“Okay, I guess,” I said, rubbing my eyes, which felt heavy and dry. It was hard to hide how tired I felt. My mother’s face fell a little when she noticed, a look of pity more than anything else. The last few days had been like trying to sleep through a fever. I felt uncomfortable when I was with Sesha and out of place with my parents, as if I were living in an alternate reality. I wanted to hug my mother but I didn’t. The space between us felt too heavy.

“She’s in a better mood than yesterday,” I added, keeping Sesha’s story about Scott to myself. “Still not eating much though.”

“Hospital food is the pits,” she said, smiling a bit. “Don’t worry, she’s gonna bounce back.”

I was grateful for my mother’s support, but I could tell it was a struggle for her to stay positive. Besides my relationship with Sesha, the last year had been difficult for our family. Since my freshman year, my mood and state of mind had started to shift. I spent more time by myself; I slept long hours and was impossible to wake in the mornings; and I was regularly acting out of character, reacting with fits of anger and nearly constant irritability to everyone around me. But the most dramatic changes were a number of compulsive and increasingly odd behaviors: constantly checking door locks, washing my hands excessively, and counting every footstep. I developed an irrational and overwhelming concern that any word I spoke would offend someone. It was maddening.

My erratic behavior and the severity of my new habits had my parents concerned. So, after months of resisting, I finally agreed to an evaluation at Western Psychiatric Institute and Clinic (WPIC). Sesha was committed to the psych ward at Forbes just two weeks before my evaluation, when I would be formally diagnosed with severe clinical depression and obsessive-compulsive disorder. It proved that my parents’ fears were not unfounded. Something was wrong with me.

***

“This is more than you can fix,” my mother said, referring to Sesha and her problems with her father. “The best you can do is to be there for her, be a good listener.”

It was Thanksgiving night. We were seated at the lunch counter in a Denny’s, set amidst the suburban sprawl near the hospital, finishing our dinners. On my mother’s plate was a hot turkey sandwich, half eaten and the gravy now cold. Crumbs from a BLT dotted my plate, the inedible crusts discarded in a tidy semicircle. Our receipt, which the waitress had set down in a wet ring left by my water glass, lay on the counter. I picked up the soggy piece of paper and handed it to my mother, who looked at my hands, dry and irritated from too much washing.

“Dad can take you to the hospital tomorrow, if you want,” she said as we stood up and walked to the cash register. She rifled through her purse as she talked, searching for her wallet.

I wondered what version of Sesha I might see the next day. Would she be rational and kind, like she’d been in the final minutes before we said goodbye? Or would she be spiteful, talking in half-truths that left my brain in knots?

I would learn much later that my parents, particularly my mother, had deep concerns about Sesha’s influence on me. In the notes from my initial evaluation at WPIC, the clinician wrote: “Matt’s mother reports that he may speak to his girlfriend on the phone 6-7 times per night, and she is concerned that he feels responsible for her psychological well-being. Mrs. Newton also stated the concern that somehow Matt’s girlfriend would push him into a joint suicide.”

My mother smiled as she handed the bill and her credit card to the man behind the cash register.

“Was everything OK tonight?” he asked, a pleasant look on his face.

“Yes,” my mother said. “Everything was fine.”

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Matthew Newton is the author of one of the essays in the book Writing Away the Stigma.

The Happiest Days of Our Lives

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Morning Zen Guest Blog Post ~ Rebecca College

“Not this time, Becky,” my father says without remorse, “I’m just too busy—have too much to do.”

I hang up and spin on my heel to face my husband, seething.

“He’s too fucking busy to see us. To see his grandkids! What the hell does he have to do on a Saturday afternoon? It’s not like he’s taking care of my mom anymore!”

My husband, Tim, comes over and squeezes my shoulder as if trying to open up a pressure valve, knowing I would push away a hug. He’s long been a witness to the tension between my dad and me. but the tension seemed to be frustratingly one-sided, this time.

I shrug off his hand and pace, furious. “It would have been two hours, only two hours, to go with Mom and us to lunch. And his only grandchildren! Who he gets to see—what—once a month, if that? Nice that he fucking cares. What am I supposed to do with this? Seriously, what?”

Tim slowly shakes his head. “Nothing. He’s not going to change. Try to let it go.”

I take a deep breath and let it out slowly, trying to do just that: let it go. I don’t want to allow my father’s behavior to ruin another visit.

It will be our first chance to visit my mom, who has recently been placed in a “memory care” facility at an assisted living home. Her battle with dementia has been developing slowly for years, recognizably since I was a teenager, but it really all started while she was in Vietnam. In the past twelve months, it became harder and harder to ignore that she was more than “just forgetful.” My father, her caregiver, had tried to deny or explain away her condition for years, but her problems came to a head, two months ago, when she again had to be committed to a psychiatric ward for her depression and memory lapses. He could no longer look the other way, could no longer pretend she would be safe if he just kept her home.

***

I came home from high school to find her asleep on the couch. She was bundled up in her pale pink bathrobe, another day spent in her pajamas. She’d been “sick” for weeks, but regardless of the hours and days she spent resting, she appeared to be no closer to recovery.

“Becky, in the kitchen,” my dad called out in an unusually calm voice. I dumped my book bag in the hallway and walked as far as the threshold of the kitchen, where I slouched in the doorway, unwilling to commit to sharing the room with him. From this spot I was able to participate in a conversation with my dad—seated at the round table, leaning on it with his forearms to support a portion of his formidable weight—while sneaking glances at my mom in the living room.

“What.” It wouldn’t do to give him the respect he felt he deserved.

“As I’m sure you’ve noticed, Mom isn’t well. She’s going to be going away for a while next week.”

“Where?”

“She’s severely depressed and has been having nightmares, flashbacks. Her PTSD . . . she’ll be going to a VA hospital for a few months.”

It wasn’t as if this were the first time the VA was mentioned in our house; my parents had a long and complicated relationship with the Department of Veterans Affairs. Both had gone through counseling at the VA in the early years of my life. The experience was my father’s first—and last—attempt at therapy. His psychologist “betrayed him,” an unforgivable sin that reinforced his view that the world was a horrible place where no one was worthy of trust. My mom went to both a psychologist and a support group for Vietnam Vets, specifically for women. As a kid I was dragged along, spending evenings in someone’s office, playing make-believe with another vet’s child, inventing worlds under desks and in cabinets while my mother found comfort in these women’s shared experiences. I knew even then that the VA was a part of my parents’ life, that it always would be, and this knowledge was confirmed year after year as I grew older and began to understand that their health would always be tied to their statuses as “vets.”

“How is sending her away going to help?” I snarled, as if I knew better. I began kicking the edge of the door trim with the toe of my Doc Marten, hoping I could channel my confusion and fear into that piece of paneling while hiding these feelings from my dad. As apathetically as I could, I croaked out, “Well, who’s going to take care of me?”

He cleared his throat deeply and with clear agitation—yes, I’d scored a hit!—and answered sternly, “Me. Who do you think?”

I snorted and turned to leave, to escape to my bedroom, when he cleared his throat again to get my attention. I paused and turned my head as little as possible, implying that I was listening without having to look him in the eye.

“You just make it worse, you know. You’re the reason she can’t get better. You’re the reason she has to go away.”

***

My parents met in 1967, both stationed near Pleiku while serving in the United States Army. Men the country over were holding their breath in the hope that their numbers wouldn’t be called for the draft, but despite this and the escalating violence in Vietnam, both my father and mother went voluntarily. My father, a delinquent from the streets of Queens, hoped that enlisting would give him some control over where he was sent; my mother, a girl who had only left her native Bethlehem, Pennsylvania, twice before graduating from nursing school, wanted “to see the world, to have an adventure.” Each was on active duty for only two years, but within that twenty-four-month span they would travel the world, meet each other, and be exposed to horrors they would never be able to process.

Post-traumatic stress disorder is not a new medical diagnosis. It has been known as a real and serious condition for decades, but only in the past five or ten years has it started to be acknowledged as the severely life-altering and potentially life-threatening disorder that it is, especially for the population that so often carries the diagnosis: combat veterans. Thousands of veterans had come home witnesses of the tragedies of guerrilla warfare only to be taunted and harassed. It was believed that once you were stateside, you should forget what you saw and get on with your life. Dwelling on the past wouldn’t help, and if you were having trouble coping, maybe you just needed to “toughen up.”I don’t know how soon my parents were diagnosed with PTSD after they returned to the US, or if they even believed it when they heard the words. Neither do I remember the age at which I first became aware of those four letters and the weight they carried within our home. But I knew from some of my earliest days that my parents had served not only in the military but in Vietnam, and that it continued to impact their actions, moods, and health. When I was five, I helped clean the Vietnam Memorial with members of Rolling Thunder; when I was seven, I watched Good Morning, Vietnam with my folks before I understood any of the references; when I was sixteen . . .

***

Once down the hall and in my bedroom, my ritual began: I shut my door as hard as I could without it being a “slam,” turned on my stereo, and collapsed onto my mattress. The music was always aggressive and loud, but that day I wasn’t listening. I was hunched over and sobbing, wracked with the guilt of what I feared I’d done to this woman I loved, while also barely able to suppress my rage at that man in my kitchen.

As my energy waned and my tears subsided, I was able to focus on the stereo, quieting for a moment before “Comfortably Numb” began to fill my bedroom. If only I could be, I thought.

***

When I was a little girl, my father, in his darkest moments, would lock himself away in the basement and blast music, although I would have been hard-pressed to call it such at the time. Through the floor I could hear the whir of helicopters, the squeal of guitars, the chanting of children—and his screams, primal and blood-curdling.

“When your dad comes back upstairs, let’s remember to stay out of his way. He may be a bit upset. This is a hard time for him,” my mom would gently but firmly remind my brother and me, as if we needed such a reminder. I wanted nothing to do with him. I wanted only to hide in my closet with my sock monkey and hope the screaming would stop. And when it did, when he emerged to be with his family, I wanted nothing more than to disappear, to be invisible, so that his screams wouldn’t turn on me.

Years later, I would be able to identify the music of those daytime nightmares. It was Pink Floyd’s The Wall, a concept album dealing with isolation and abandonment. When I finally discovered the record for myself, I found it oddly soothing, feeling that its main character somehow knew me, knew how I felt. It helped me through my darkest moments, trying as I was to live in a world created and controlled by two damaged people. Little did I realize, at the time, that the music that helped me to feel that I could survive another day had also kept my father going a decade before. We both found solace in these musical tales of isolation, but was I also finding a piece of my father? He’d felt then the way I felt now; was this the subconscious bridge I had been searching for?

***

My mom came home after two months in the PTSD unit of a VA Hospital; or rather, her shell did. The time had passed without incident at home, mainly because my father and I retreated into our own rooms and worlds, crossing paths only when absolutely necessary. (“Becky, here’s a hundred dollars. I’m going to drop you off at the grocery store tomorrow morning and pick you up after an hour. We need milk.”) Upon returning, she floated through the house, wandering from room to room, sitting for a minute or an hour and then moving on, staring at the walls as if they could provide her some answer. Our kitchen table became a landscape of little orange bottles. She had always taken a lot of medication—for arthritis, irritable bowel syndrome, a racing heart—but the collection more than doubled and now included antidepressants, anti-anxiety pills, and sleep aids. I stood in the doorway and watched her open and close each bottle, organizing the pastel tablets in groupings that seemed to make sense to her. As she closed yet another lid, she looked up and noticed me watching.

“Don’t get old,” she said with a smile that didn’t reach her eyes. “It’s the pits.”

“You’re not old,” I wanted to shout, “you have so much life left, if you would just wake up!” She was only fifty-three, yet it seemed as if she could be eighty-three. Those two damn years just kept robbing her of more.

***

It would take her months, if not years, to get back to some approximation of herself. Her journey toward healing is another story in and of itself, a tale of beautiful moments bogged down by a heaviness deep within. She would continue to have spells, to feel “punky,” as she taught us to call the blues, growing up. And she would have a few scares: an accidental overdose here, a forgetful moment there. My father, who had very deliberately refused to accept treatment for his own PTSD, continued to withdraw further into himself. He faced my mom’s PTSD head-on every day, but somehow he could never address his own inner-torment. Dad and I would continue to fight; my teenage angst wasn’t quelled and my personal struggle with depression wasn’t over, but in those two months alone together, we had forged a truce.

I grew up knowing that there were holes in my knowledge, that there were pieces of their stories that as a child I couldn’t and shouldn’t know. I always thought I would sit down and hear their stories as an adult, when I could better understand these two people and to try to come to terms with the life I’d grown up in, once we were all in a better place. But we never would be. Now, the story is slipping away along with my mom, and I find myself trying to grasp it ever harder.

***

It’s a beautiful autumn day, and the sun shines through the windshield as we make our way down the small streets that take us to the facility.

“There,” I say, pointing across the dashboard to a driveway marked by a wayfinding sign. We turn in and head toward a large building with long, white columns supporting a roof that covers the wraparound drive leading to the front door. After parking and unbuckling the kids, we shuffle our feet through the fallen leaves on the sidewalk.

“Crunch, crunch, crunch,” my one-year-old son mimics, “crunchy leaves!”As we get closer to the door, I go over the facts with my daughter one more time. I try in all aspects to be as honest with my children as possible, and I feel that this is no different. But how do you explain to a four-year-old why Grammy doesn’t live at home anymore? We’ve talked about Grammy being sick but not in a way you can see, and Tim and I have tried to impress upon her that this isn’t necessarily something Grammy would want to talk about, but who knows what sinks in to that still-developing brain? Underestimating her has only proved us foolish, so we keep feeding her facts, and today is no different.

“There will be lots of other people inside, and they may be sick. So please don’t run, and stay close to us, and let’s use our inside voices. But we’ll walk around and see Grammy’s room and where she hangs out and eats her meals, and maybe we’ll meet some of her friends, okay?” I try to summarize.

“Okay, Mama, okay. I know. You already told me this.”

We walk through the lobby, and I can’t help but scan the place, trying to get a feel for the living conditions based on the furniture and environment. There’s a middle-aged man and his son playing chess at a coffee table—just visitors, no doubt, but the fact that they seem so comfortably settled in gives me room to exhale the breath I wasn’t aware I’d been holding. We head toward the elevators, the long hair of my babes swinging back and forth as they race to press the button. Once upstairs and at my mom’s door, they knock and shout “Grammy!” and bounce with excitement. I hear her start to welcome us even before the door opens, and as she pulls it back, she is rushed by two squealing little beings, one hugging each leg. I can see their huge smiles as their faces smoosh into her, and the expression on her face mirrors their own—pure, innocent joy.

Tim reaches over and squeezes my hand. “She’s okay,” he whispers. “You?”

I nod and smile, blinking back a few stray tears. My past and my future stand before me, beautiful and radiant and happy. And at least on this day, being with them, I am too.

*   *   *   *   *   *    *   *   *

Rebecca College is the author of one of the essays in the book Writing Away the Stigma.

Writing Away the Stigma—The workshop, the rewards, and the cost

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Morning Zen Guest Blog Post ~ Lee Gutkind

writingawaystigmaOne in four American adults will endure the trials of a mental health condition this year, and more than half will experience one in their lifetime. Yet the stigma of mental illness remains, leading many to face their difficulties in shame and silence. In this collection, ten writers confront the stigma of mental illness head-on, bravely telling stories of devastating depressions, persistent traumas, overwhelming compulsions, and more.

I believe in stories—true stories. And I believe that true stories, told well—the genre known as creative nonfiction—can precipitate action and change. This, after all, is why writers write. We want our work to make a difference, despite the cost.

Despite the cost?

These days, Americans are talking more about the challenges of mental illness. We are not doing much about it as a nation, as of yet, but we are talking—giving it lip service—and that’s a step forward. But the stigma remains prevalent.

What is stigma? I think most of us don’t know what a powerful word it is, how damning and threatening it is. Look it up! Stigma is defined as a mark of disgrace, shame, dishonor, and humiliation.

Can this be true? Are we disgraceful because we suffer from mental illness? Should we be—do we deserve to be—dishonored? Hardly. Like those who suffer from cancer, diabetes, or heart disease, for example, we do not choose to be diagnosed with mental illness. As they say, you have to learn to play the hand you’ve been dealt.

Which brings me back to the cost. What will it cost—in reputation, income, professional advancement, friendships—the ten brave writers who have come out to tell their stories of mental illness in this collection? Maybe—hopefully—nothing. But they’ve put themselves on the line, purposely making themselves and their friends and their families vulnerable for the sake of others who don’t yet know how to tell their stories, or who are simply too fearful to do so because of the possible consequences.

By the way, twelve people were initially accepted into the Writing Away the Stigma workshop from which these essays came about, twelve people who committed to telling their stories no matter the consequence. And yet, two of the twelve writers backed out: one at the conclusion of the workshop, and another quite recently, right before this book went into production. Writing away the stigma is a daunting thing to do.

There were eighty-one applicants to the Writing Away the Stigma workshop, a series of five three-hour, once-a-week classes open to residents of a ten-county area in southwestern Pennsylvania. The goal in the end was to write a true story, a creative nonfiction essay, about mental illness—their own, or that of a friend or family member.

I taught the workshops, which were offered free of charge due to the generous support of the Staunton Farm Foundation. We had a public reading a few months after the class ended, and the turnout was amazing: one hundred people from all over the area attended to see the participants stand in front of a microphone, identify themselves, and read excerpts of their work. It was a dramatic and powerful experience—a magic moment of creativity and trust when these survivors and supporters shared their lives with so many strangers.

True stories are powerful persuaders. The more stories told by the voices in the crowd—by the one in four people who will suffer from a diagnosable mental illness this year—the more legislators will listen (and perhaps one day take action); the more employers will open up their hiring parameters; the more Big Pharma will be pressured to lower the outlandish prices of their products; and the more even the experts, the MDs, PhDs, and MSWs, will learn to work together and support one another toward a common goal.

The Writing Away the Stigma workshop and this book are a call to action for those who have suffered in silence to speak out. Now is the time to tell your vivid and unforgettable true stories to anyone who will listen. We must raise a deafening chorus that will be heard throughout the country, striking a chord, compelling action, and eventually forcing a shift toward understanding and appreciation of the challenges presented by mental illness. We must write away the stigma, tell our true stories, until the stigma no longer exists.

Lee Gutkind and the authors of the ten essays in his book have graciously given their consent for their words to be shared on the Children's Mental Health Network website. We will share their writings over the next few months. Enjoy!

*   *   *   *   *   *    *   *   *

leeLee Gutkind is the author or editor of numerous books about the medical and mental health communities, including Many Sleepless Nights: The World of Organ Transplantation; Stuck in Time: The Tragedy of Childhood Mental Illness; One Children’s Place: Inside a Children’s Hospital, Writing Away the Stigma: Ten Courageous Writers Tell True Stories About Depression, Bipolar Disorder, ADHD, OCD.  His essays about mental illness and related issues have appeared in the New York Times and on National Public Radio. He is the founding editor of Creative Nonfiction magazine and the Distinguished Writer in Residence at the Consortium for Science, Policy, and Outcomes at Arizona State University. Lee Gutkind is a member of the Children's Mental Health Network Advisory Council.

The Runaway Bunny

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Morning Zen Guest Blog Post ~ Andrea Laurion

Child psychiatrists have great toy collections, and Dr. Gainor was no exception. Despite the variety, I played with the same one during every visit—a white rabbit puppet. At nine years old, I was getting a bit too old for toys, but I quickly decided that the puppet was too cute to pass up.

Dr. Gainor, a short brunette with a motherly vibe, asked me a lot of questions, and as a kid who loved to talk, I didn’t mind answering them. Unlike most adults, she seemed to listen. We talked about school and home, mostly, but she’d sometimes ask what I wanted to be when I grew up, or she’d ask what books I liked to read. She also prescribed the little orange pills I had to take every morning and afternoon.

“You know how you wear glasses to see better?” she would say. “These are like glasses for your brain. They help your brain focus.”

***

On one particular visit, she asked my father about his expectations for me.

“I just want her to do well in school,” he said. “Get some scholarships, go to college.”

I didn’t look up, too busy playing with the puppet. I held the bunny to my chest, stroking it gently, pretending that my hand wasn’t what kept it alive.

She turned her attention to me. “Did you hear what your dad said?

“Yep.” I ran my fingers over the soft faux fur, the bunny tucked under my chin. Neither of them knew that my heart was breaking.

His hope that I would attend college is understandable, now. Any good parent wants to provide the best possible future for his or her child, and maybe fathers like mine, who themselves didn’t go to college, feel this desire more than most. But I was a child at the time, and I didn’t understand this. He wanted me to be like the kids in my class who got straight As, who sat still at their desks and remembered their scissors on Art Day. What I heard was, “I want her to be perfect,” and I knew I never could be.

The little orange pills were to salve an itch I didn’t know I had. They made me obedient in the name of normalcy.

“You can’t pay attention to anything,” my classmates would tell me during group projects, echoing what they’d heard adults say. Actually, I paid attention to everything: a pencil dropping across the room; a dog barking outside; the teacher shuffling papers on her desk. Each little activity drew me away from the task in front of me. It seemed to others as if I couldn’t keep my eyes on my math test, when in reality I saw it all.

It was funny to me that I had to take those pills to focus, because when I was really interested in something, I was all in. Especially reading. I couldn’t start reading at the end of the school day because I would get so immersed that I wouldn’t hear my afternoon bus called over the PA system. When I saw Star Wars, a few years later, I completely understood the concept of “light speed.” My brain still feels this way when I get super involved in some activity, like reading, writing, or watching a favorite TV show.

But I was also in constant motion. My muscles were never comfortable. I would sit up in my chair, only to realize I needed to scratch my nose. And the hair behind my ears was tangled, so of course I had to run my fingers through it. Now I was sitting back in my seat and crossing my ankles, but my shoes weren’t tied as tight as I’d have liked, so I’d better tie them, and—oh no!—I knocked my pencil to the ground. Staying in one place during class was bad. Sitting through Catholic Mass was worse.

“Sit still,” my Catholic school teachers would growl down at me in the church pew.

“I am,” I said. I didn’t understand the problem. I never stood up once. So I was messing with the hymnals and swinging my feet and picking at the scab on my knee and biting my nails and craning my head to look at all the stained glass windows and making up stories in my head. My butt never left the seat.

The pills made my brain say, “No, don’t look up at the kids giggling across the room, this math test is far more interesting.” With those pills, I could sit through Mass with my eyes on the priest, watching him at the podium as he talked about Jesus embracing the little children with open arms. When I took those pills, I could be perfect.

When I took the pills, of course.

The morning one was easy. My mother was around to bug me until I popped it in my mouth. Afternoons were harder. I had to go to the front office after recess and get it from the secretary, which I forgot to do nearly every day.

“Pardon the interruption,” the secretary would call over the loudspeaker. “Andrea Laurion, please report to the office. Andrea Laurion, please report to the office.”

I would immediately drop what I was doing, rushing out of class and down the stairs. The pills were kept in a circular plastic case with a collapsible cup. Our plaid skirts didn’t come with pockets, so I’d put it in my front shirt pocket when I was done.

“That looks like a can of snuff,” one of the girls once said. “Are you doing snuff?”

“No,” I answered. “It’s for my pill.”

I didn’t know, yet, that this was something embarrassing. I was honest in the way of children who are unaware that their openness will come back to shame them.

“Don’t forget to take your piiiiill,” some kids called when we walked out to recess.

“Shut up!” I yelled back. Forty-five minutes later, though, I proved them right, as my name echoed through the school’s wooden halls. I loved attention, but not this kind—not the kind that made the rest of the school wonder if I was always in trouble.

I grew to hate those pills. I didn’t want to be perfect if it meant standing out like this, and I started fighting with my mother about taking them.

“No!” I’d scream. “I don’t want to take my pill today!”

She’d bring up Dr. Gainor’s glasses analogy. “If you’re not going to take your pill, then give me your glasses,” she’d say. “Your brain needs these pills like your eyes need your glasses.”

Usually this would work, but my dad would join in the screaming matches if I was being pigheaded. And he always won.

“Take your pill! He’d thunder. “It’s that simple!” Taking the pill was simple, but the feelings that came with it were not.

My father didn’t look like the other dads, who went to work wearing suit jackets. He lived in his work clothes: T-shirts and jeans. He didn’t work in an office—never did, never would—so he had no reason to dress other than exactly how he wanted. The definition of big and tall, his hands were often dirty and his farmer’s tan a sign of mid-summer. And in place of the simple mustaches worn by other dads, my father’s trademark feature was his long black beard. I’ve never seen my father’s chin. When he’s happy, his brown eyes twinkle, just like Laura Ingalls Wilder described her pa’s eyes in the Little House books. Falling asleep at night, few things comforted me more than hearing his laughter echo through the house. He would make mental notes of our interests and surprise us with thoughtful trinkets.

He liked to take my siblings and me to the movies on days we didn’t have to go to school. We would get a large-sized popcorn and sit in a single row, passing the giant bag back and forth while grabbing handfuls. If the movie was really good, we’d tell my nine-to-five working mom about it at dinner, reciting our favorite lines and laughing over the best parts.

Nothing ever, ever got past him. I could half-ass chores with my mother, but with him, no way.

“You didn’t vacuum the whole floor. The whole floor includes under your bed,” he’d say, looking underneath my twin bed.

“Dad,” I’d whine, “it’s close enough.”

“It’s not enough. Finish the job and you’ll be done.”

My father was also the oldest of his siblings. I got my tiny, upturned nose from him, and his personality, too. Stubborn, independent, and impatient, we share the horrible need to have the last word in every argument. My mother and sister, on the other hand, are both middle children. By birth-order destiny, they were able to tolerate our tempers, egos, and bossy attitudes. It’s not surprising that I was my mother’s child and my sister was Daddy’s Girl.

Everything I know about my father, his family, and his childhood, I learned through my mother. She was the one who explained away his anger and his frustrations.

“Your dad wanted to be a veterinarian,” the story went, “but when it came time to apply for colleges, his grades weren’t good enough. So he had to go to trade school, and he doesn’t want the same for you. He wants you to be able to do whatever you want.”

My dad was away from home for half of the year, working on cargo ships, and the other half he spent playing Mr. Mom. He braided my sister’s hair, made our lunches, and took me to my doctor’s appointments while my mother worked as a nine-to-five nurse. He wanted a better life for me, and tough love was his means of motivation. I didn’t know how to express, at the time, how suffocating his expectations could be. He never used the word “perfect,” but that’s how I felt he wanted me to be.

***

“If you ever get detention,” he told me on the first day of fourth grade, “you’re walking home.”

We didn’t live far from school, but this threat was the cruelest punishment I could imagine. It was the height of 1990s stranger danger. No one in my class walked to or from school. Everyone either rode the bus or got a ride from their parents. To make me stand out as the one kid who walked home made the potential punishment even worse.

I tried for months to be good, to do my homework, to get to class on time, to remember the right school supplies. I would get frustrated at myself for struggling to do the things that other kids seemed to do with ease, like staying in my seat and raising my hand before I spoke. One day, all my failures collided and I got my first detention slip.

I cried in front of the entire class when it happened. Everyone laughed at my overreaction, even my teacher, while I fizzed with embarrassment. But it wasn’t detention or the humiliation of crying in front of the class that filled me with dread. It was the punishment that would follow my punishment.

Detention itself was uneventful. For one hour after school, I had to write, in my best cursive handwriting, five ways in which I would improve so I wouldn’t receive those demerits again. My mind was on the walk home from school the entire time. I couldn’t believe I had to walk alone. I wasn’t even allowed to wait for the bus by myself, and yet he wanted me to do this. The world could take me! Then he’d be sorry. Then he’d miss me. Then he’d see that this was a huge mistake.

My heart lifted when I saw my father through the school’s glass doors. He wasn’t going to going to make me walk home after all! He’d come to school to pick me up.

Before I could say anything, he took the backpack from my back, opened the passenger seat, and put it inside. He shut the door again.

“All right,” he said. “Start walking.”

My mouth fell open.

“Dad. No.”

He scowled and his voice got louder. “This is not a surprise, Andrea. I told you this was going to happen. Don’t act like this.”

I whined and pleaded for a few more minutes, but it was no use. He had zero sympathy.

The other detention attendees were now leaving school, walking to waiting cars and getting inside. It felt like everyone was watching us.

“Fine,” I sputtered, and turned to walk in the direction of our house, the fringe on my denim cowgirl jean jacket fluttering with every step. I started to cry.

And I cried the entire way, my feelings a mixture of shame, anger, and self-pity. Big, fat, pitiful tears that ran down my cheeks and onto my Peter Pan collar. Why couldn’t I have a normal dad who picked me up from detention like everyone else? Why was he so mean? Why did he hate me so much?

All the while, my father drove extremely slowly beside me, watching me. I never glanced over my shoulder, but I could hear the motor behind me. I walked past familiar sights, which looked different from this new perspective: the day care center I sometimes went to after school; Cameron Court, where I played basketball in the summer. I turned right from Prospect Street toward Pittsburgh Street, which took me past the library, two gray stone churches, and up the hill toward home.

“I hate him,” I thought. “I hate him so much. He’s the worst dad in the world, and he must hate me, too, to make me do this.” My heart burned with resentment. I made up my mind: I had no choice but to run away at the first opportunity. Clearly, I could no longer live in that house. He obviously didn’t care about me. I would be doing him a favor by leaving. I wasn’t good enough for him and I never would be.

When we were half a block from home, our house within sight, he sped up, thinking he would meet me there.

“This is my chance,” I thought.

I turned on my heel and sprinted in the opposite direction for two blocks before I stopped to catch my breath. The house next to me was missing a length of drainpipe, allowing water from an earlier rainfall to splash from the roof onto the ground. I put my head underneath the stream.

“This is how I’ll take a shower on the streets,” I thought. I was a nine-year-old in a Catholic school uniform, and I really, truly believed I would never go home again.

I heard a screech of tires from behind me, and I turned to see the family minivan roar up the street and pull to a stop right next to me. My eyes widened with shock. I was too frightened to move. He was looking for me?

“Get. In. The. Car.” He spoke between clenched teeth.

Before I got in, I saw it. I didn’t believe it at the time, because I thought fear was an emotion that disappeared well before adulthood. But I now know it for what it was. Past the anger, I saw his fear. He was afraid of losing me. Me, the imperfect mess.

At home, he screamed and lectured for hours, his anger filling the house.

“Why would you run away when you were so close to home?” he shouted. “It’s not like you didn’t know where to go, Andrea.”

“I don’t know!” I yelled back, over and over, too embarrassed to say that I’d wanted never to go home again. I was often expected to explain my impulsiveness, but my ability to articulate my tangled feelings got lost somewhere between my heart and my throat. I hurt all the time. Didn’t they understand that?

A dozen detentions would add up, over those early years, for my typical indiscretions: tardiness, talking out, forgetfulness. Despite all that, and without discussion, I would never again walk home from detention.

*   *   *   *   *   *    *   *   *

Andrea Laurion is the author of one of the essays in the book Writing Away the Stigma.

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