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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.

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!

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    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
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    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.

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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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.

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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.

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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!

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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.

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

"For" or "against" AOT—Are we asking the wrong question?

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Over the past year, the Children’s Mental Health Network has convened a series of dialogues in Washington, DC on Assisted Outpatient Treatment (AOT). AOT is one of the cornerstones (though only a small part) of the Helping Families in Mental Health Crisis Act. The bill didn't go anywhere in the last Congress, but any day now we should see the introduction of an updated version of the bill. No doubt, the new bill will once again, be the topic of intense conversation in mental health circles.

Why did the Children's Mental Health Network focus the dialogues on AOT?
Championed by Representative Tim Murphy (R, PA-18), the Helping All Families in Mental Health Crisis Act included two components that have dominated the conversation in mental health circles. Both the inclusion of AOT and a stinging critique of the role of SAMHSA in addressing the needs of the seriously mentally ill have led to divisive splits among advocates. Sadly, the important conversation about mental health reform has been narrowed to one of the appropriateness of a civil commitment process that already exists in 45 states and questions about the leadership and focus of the Substance Abuse and Mental Health Services Administration (SAMHSA).

Mixed in the fray last year was the introduction of the Strengthening Mental Health in Our Communities Act, which was viewed by many as a Democratic response to the Helping All Families in Mental Health Crisis Act. Championed by Rep. Ron Barber (D-Ariz.) the bill moved away from controversial recommendations (such as AOT) and took more of a prevention focus for treating mental illness.

Members of Congress who are drafting legislation this year in both the House and Senate deserve a more robust dialogue between advocates that goes beyond a "for" or "against" argument. If we are unable to address the complexity involved in comprehensive mental health reform, how can we expect members of Congress to do the same, or more important, to ever come to an agreement on something useful?

Start where the tension is greatest and the pain is deepest
We have a simple rule for our dialogues. We start where the tension is greatest, and the pain is deepest, in this case, the AOT debate. The dialogue series and our recent visit to a community that utilizes AOT is the first step in the Children’s Mental Health Networks’ ongoing effort to address this polarization among advocates.

  • Note: We will turn our focus to bill recommendations regarding the role of SAMHSA beginning next week.

Why a visit to observe the AOT process?
After our third dialogue session on AOT, it became evident that the next logical step in the process was to visit a community that utilized the AOT process in a way that Congressman Murphy would likely hold up as an example of excellence. I asked the Treatment Advocacy Center, the group most knowledgeable about how AOT is being utilized across the country, for a recommendation of a community that they would describe as a shining example of the use of AOT. It is important to note that the founder of the Treatment and Advocacy Center, E. Fuller Torrey, has been a vocal proponent of both the Murphy bill and AOT.

The Treatment and Advocacy Center referred me to the court of Judge Randy Rogers, probate judge for Butler County, Ohio, located in the city of Hamilton, Ohio. Judge Rogers, his team and community partners welcomed us to visit, observe their process and engage in dialogue.

  • Note: Focusing on this particular community does not, and should not, imply that they are “perfect” in their approach to meeting the needs of individuals with serious mental illness and their families. The individuals from Butler County, who facilitate the AOT process, would be the first to tell you that their approach is not perfect. But they have been at it for a number of years and have continued to learn from mistakes and make modifications to make the process better.

The focus of the Children’s Mental Health Network on the visit to Butler County
Our purpose was to observe, listen and ask questions so that we could better understand how this one community utilizes AOT. None of the Network team gave advice or tried to promote a personally held position on AOT. We directed our questions toward what they saw as the keys to success in their approach to wrapping services and supports around individuals with serious mental illness who are going through civil commitment proceedings.

Recognizing that AOT is approached differently in communities across the nation, we were hopeful that we might be able to identify a few key elements that would help broaden the national dialogue on AOT beyond “for” or “against.”

  • Note: A list of CMHNetwork site visit members is included at the end of this post.

Structure of the visit
We spent the morning in the courtroom, observing several updates with individuals under civil commitment. After the morning session, we held a roundtable discussion over lunch with representatives of the court, mental health, the local hospital and other community leaders. We then transitioned to a roundtable discussion with community providers, family members and advocates. Finally, we held a wrap-up discussion with Judge Rogers in the late afternoon.

Overall conclusion about AOT as utilized in Butler County, Ohio

  • The “A” (Assisted) in AOT is one component (and critical starting point) of a comprehensive wraparound effort employed by a number of different agencies and providers.
  • The “O” (Outpatient) in AOT provides a mindset for this community of providers that the goal from day one is healthy integration into the community.
  • The “T” (Treatment) in AOT is the element that holds everything together. Confidence on the part of both the judicial system and the mental health community on the availability and robustness of a wide range of services and supports is critical to the successful use of the AOT process.

It was enlightening to hear from the local participants in the dialogue as they reflected on how far they have come in their understanding of how to effectively use the AOT process. The road leading to where they are now was full of mistakes, but also enough success and strong leadership to keep them motivated to continue to improve.

Most striking was they way they talked about AOT. For them, it was very clear that the civil commitment component was the beginning part of a larger process to help individuals along the way to recovery. For this group of providers, family members, court officials and community leaders, the question is not “Are you for or against AOT”. The question is “Do we have sufficient services and supports around this individual to help them recover in the community? The actual civil commitment process and court follow-up is a critical component, but only one of many.

Broadening the understanding of the AOT process is important for readers to understand. If we want mental health reform, true mental health reform, we must get away from asking “for” or “against” questions. Instead of asking if someone is for or against AOT, the better question is “What does a community need to have in place to effectively protect and promote recovery for individuals with serious mental illness?” In Butler County, it requires a combination of services and supports, and for those who are most ill, a compassionate judicial system.

What makes the AOT process work in Butler County?
We spent much of our time on this visit asking participants in the dialogue to share with us what they saw as the key components of their success utilizing the AOT process. Their willingness to be candid about challenges and triumphs over many years of developing a process that seems to be working for them was both humbling and inspiring.

Courtroom leadership is knowledgeable about mental illness, emphasizes humanity and dignity in the courtroom, and exercises authority through love.

Judge Randy Rogers
Judge Rogers is an imposing figure. Six-foot 7 inches tall, a booming voice and a heart as big as Ohio. I am pretty sure that if you looked up the words “charismatic” and “sincerity” you would see a reference to Judge Rogers. The people around him idolize him. And it is not hard to see why. He is intensely focused on wrapping love and support around those who come before him in court, almost to the point of obsession.

Before court began on the morning of our visit, Judge Rogers spoke to us about his view of the responsibility of a probate judge, especially when invoking civil commitment proceedings. Judge Rogers said,  “When you place someone on a civil commitment you are responsible. You have a responsibility to know where they are and know what they are doing. It is not acceptable to not know where they are. When you take some of their civil liberties away from them, you owe them a higher level of care. The goal of civil commitment is for people to recover, get better and get off civil commitment. “

Commitment to humanity and dignity
Everyone we spoke with during the visit commented on how Judge Rogers exudes passion, love and care for the individuals who come into his courtroom. He, himself, referenced changes in his life 20 years ago that had an impact on who he is today and how he views those individuals involved with AOT. Judge Rogers bases his approach on the principle of Parens Patriae, which for him, translates to leading with authority through love. “You have to care for people in order to have the authority over them.”

Here is one example to give you an idea of his level of commitment to those coming before him in court. The judge is about six years away from retirement. In preparation for retirement, he has asked his assistant to go through the more than 1300 cases that have come into his courtroom during his long career on the bench. His assistant is finding these people, taking a picture and writing a brief bio of them. Why? So that when he retires, the next judge will have a folder, with a picture and brief synopsis to help humanize the process for both the judge and the individual appearing in court. They call this the “Red Book”, and Judge Rogers thinks it will take about two years to complete this project.

Magistrate Patricia Hider
On the day of our visit, Magistrate Patricia Hider was presiding over the court. Sitting in the courtroom watching the proceedings was unlike any courtroom experience I have ever witnessed. Magistrate Hider was intently invested in each and every person who stood before her. The magistrate's interviewing skills and respectful question probes were impressive to observe. She gave 100% of her attention and energy to the individual before her, their family members and providers in the room as she worked to understand how the individual was progressing. She was never condescending or abrupt, even with those who might not have been following their treatment plan.

Magistrate Hider told us that she learned her interviewing skills in her previous work as a negotiator in the private sector. After law school, she worked in patent law. From there, she had the fortune to stumble upon Judge Rogers. She had a case involving mental illness and was told to “talk to the judge who handled mental illness cases.” Both she and Judge Rogers had similar personal tragedies in their background, and just like that, she was home. “You go where you need to be, not where you think you will go”, she said.

Personal experience
In the dialogue that took place after the court session, Magistrate Hider said that for her, personal experience with a loved one with mental illness helped her be a better Magistrate. Her personal experience gave her a better sense of the pain the individuals standing before her and their family members were experiencing.

Education
Magistrate Hider told us that another key factor in her development early on in her career was Judge Rogers insistence that she brief all cases related to mental illness and observe the cases he was presiding over. “I wanted to write down personal comments about people so I could remember them”, she said. I didn’t want people ever to feel we had forgotten who they were.” Now that the “Red Book” is online, she has ready access to personalized information about individuals that come before her. One of the most compelling things Magistrate Hider said to us during the visit was, “When I first started doing these hearings I would always whisper to myself before coming into the courtroom -Do no harm.”

Nicholas Schrantz, Butler County Probate Court Monitor
Judge Rogers court has a full-time Probate Monitor dedicated to his courtroom. “Nick” brings to his job both an understanding of public mental health and how the judicial system works. His job is to coordinate care between the respondent, the treating agency, and all the other players (court, mental health board, group home, crisis team, family, payee, etc.). He emphasizes to the individual under civil commitment that their treating agency is the one that provides the care, and they need to focus their attention on that treatment relationship in order to one day be released from court supervision. By doing so, he keeps the focus on the treatment relationship, and this puts the court in the background until it is necessary. As a sign of shared commitment to ensuring the highest care possible for individuals involved with the probate court, Nick’s position is fully funded by the mental health board.

Understanding the responsibilities of the court and treatment providers
There was universal agreement in our dialogue that Nick played a critical role in the process. We repeatedly heard praise for Nick’s ability to navigate the wishes of the client and treatment providers with that of the court. “His ability to talk the language of the courtroom,” as one participant stated, “is invaluable to ensuring strong communication between the court, treatment providers, the individual under civil commitment, and family members.”

Evolution of the probate court in Butler County
In 1988, Ohio Governor Richard Celeste signed into law the Mental Health Act of 1988, in large part, to reduce the number of people in state psychiatric hospitals. The push to develop community-based services and supports was on. Butler County realized if hospital beds were being reduced; they needed to beef up their community-based services.

Over time, the Butler County community mental health board developed a wider array of services and supports to help individuals transition from hospital settings to community-based settings. They developed residential housing options and a mobile crisis team, which included a deputy sheriff as part of the team. They created a crisis hotline, ACT teams, a step-down program, and rehabilitation options, along with other ancillary services designed to wrap support around individuals with serious mental illness.

With a community of health care leaders invested in developing alternatives to hospitalization, Judge Rogers noticed that there was a clear process for addressing individuals with serious mental illness in the criminal justice system (forensic monitor), but nothing on the civil side.

Fourteen years ago, the judge sat down with the psychiatrist representing the mental health board and together, they began to think through how they could adapt the model used in criminal court for civil court.

They quickly realized the harsh reality that if they were to require a treating psychiatrist to attend every outpatient commitment hearing, it would be outrageously expensive and likely just not happen. They knew that whatever system they put in place would have to be based on trust between judicial officers, mental health providers and the individuals and family members involved in the court process.

Ongoing education between the judge and the lead psychiatrist
A critical part of their planning involved educating each other. Judge Rogers reached out to the Mental Health Board psychiatrist, Dr. Kenneth Tepe and said “teach me.” As Dr. Tepe said in our discussion, “I taught him about schizophrenia and he taught me about Parens Patriae.”

The influence of the drug court model
In addition to looking at the forensic model used by the state, Judge Rogers also borrowed heavily from the Drug Court model. Judge Rogers had experience running a drug court, and the principles were similar. “The way we were doing the community docket on civil commitments put me right into my drug court mode.”

Initial efforts were not successful
Former Magistrate not invested in mental illness issues

Participants in the dialogue said that the magistrate who preceded Magistrate Hider did not have a strong interest in individuals with mental illness and that this impacted the process. Magistrate Hider stressed that if a judicial officer is going to do this work it has “got to be something you can relate to. You need a magistrate who has both heart in it and an intellect and understanding of the individuals they are seeing.”

Former Probate Monitor focused only on treatment
Initially, another agency provided the case management role in the courtroom. It became evident that the case management role was perceived to be that of a mental health treatment case manager and as such, they just focused on treatment. There was not a strong emphasis on understanding and navigating the interface between mental health and the court. As one participant told us, “There has to be a level of respect for the situation the person is in. If you allow your client to go awol, you allow them the opportunity to jeopardize even more of their personal freedom than before.“

What changed?
Communication was poor between the court and mental health, and it did not appear that individuals under civil commitment were getting what they needed. Recognizing the problem, the contract for the Probate Monitor was moved from an agency that was 100% focused on mental health services to one that had more experience with the forensic and mental health setting. The ability for the court and the mental health provider to be able to understand each others role was critical to developing a strong working relationship.

With the change in agencies, Nick Schrantz, an individual with experience in both judicial and mental health settings, was hired as Probate Monitor. At the time, there was not a job description for the Probate Monitor, so the Judge and his team created one based heavily on Nick’s input.

The elements were quickly falling into place. A passionate judge; a new magistrate who was knowledgeable about mental illness and equally passionate; and a new probate monitor experienced in both judicial and mental health settings.

Additional critical elements in place today
Participants in the dialogue identified two key elements that were critical to being able to intervene effectively with individuals in crisis. The first was the development of a mobile crisis team that could respond quickly to individuals in need of help. The second important element was the passage of a law that gave authority for health officers to be able to write an “application of emergency admission." Ohio law permits a psychiatrist, licensed clinical psychiatrist, licensed physician, health officer, parole officer, police officer or sheriff to take a person into custody and transport to a hospital as long as they have a reasonable belief that the person is mentally ill subject to hospitalization by court order, and represents a substantial risk of physical harm to self or others.

According to Nick, for the civil commitment process to work, you need a probate monitor, residential placement options, a mobile crisis team, and hospital triage social workers at a minimum. He said, “People in the community who are in trouble must have someone to call and a mobile crisis team who can respond. If they drive themselves to the emergency room, ER staff need to be trained to know how to evaluate and get the individual seen by a physician instead of discharging them without an assessment. Without these options available, most people in mental health crisis would never get into the probate process.”

Fiscal incentives and cost savings
Representatives from the mental health board were clear in our discussion that the incentives offered by the state for community mental health boards who reduced hospital bed stays helped. Early on, they exceeded their use of budgeted hospital bed days and were required to pay back the state over six hundred thousand dollars. That got their attention, and they got serious about their initiative to build community resources. Just last year, representatives from the mental health board estimated that they saved over a million dollars by avoiding the use of hospitalization. According to the probate monitor, 83 % of the individuals under civil commitment don’t end up in a psychiatric hospital. The mental health center utilizes a variety of community-based settings, many which include medication administration with nurses staffed 24 hours a day.

However, the representatives from the mental health board offered a cautionary note. Funding for supporting processes like this and the ancillary supports that help make it work far exceed what Medicaid can provide. With state funds diminishing, the mental health board has to rely on local tax levies to help support the work being done. Currently,  there is not a funding structure in place to recoup savings from Medicaid and reprogram those dollars to be reinvested in efforts like this at the local level. Not all counties have been as fortunate as Butler County with local tax levy funding. Many mental health centers in Ohio do not have the budget to put things like this in place.

Probate process continually evolving
It is important to note that in this community, the probate process appears to be continually evolving. Judge Rogers approaches the civil commitment process used with individuals who have a serious mental illness with pride, humility and an overriding concern for the safety and well-being of the individuals appearing in his court.

During the dialogue, the judge was up front about the mistakes they have made along the way and how they have learned from them. He pointed out that they have spent the last ten years honing the role of the probate monitor, developing trust and clear communication with mental health and other providers. Over the past 10 years they have developed a series of written forms to help them track progress, which has led to increased confidence on the part of community providers that the court/mental health partnership can indeed work and be beneficial to individuals under civil commitment. His hope is that others can study their mistakes, how they overcame them and possibly apply lessons learned to their community.

The AOT process used in Butler County did not happen overnight. It took years of trial and error, led by a passionate judge who would not take no for an answer.

Concluding thoughts
I want to leave you with a few quotes from dialogue participants that inspired us all during our visit:

  • Judge Rogers – "For outpatient commitment to work you have to have an interested judiciary, an array of residential treatment options, coordination of effort (like Nick), and cash to pay for the treatment programs."
  •  Magistrate Hider – “The longer I do this, the more I appreciate family history. Family members are boots on the ground.”
  • Ruth Fox – "For individuals with severe mental illness, if there is not a Judge Rogers around, those folks will be put in hospitals or locked facilities. People like Judge Rogers help the system see the value of least restrictive – but you have to have the services in place.”
  • Maria Silva - “I hope that what we saw today could happen for all families in this situation. If it were me, I would hope to receive the respect that individuals felt in the courtroom today. “

I hope this brief glimpse into one community’s approach to utilizing AOT helps broaden your understanding of the complexities involved in ensuring the protection of individuals with serious mental illness and assisting them to a place of recovery and wellness.

After our visit to Butler County, a reporter asked me, “So now that you have seen AOT, does it change your mind? Are you for or against AOT?” “Neither,” I said. “For or against is the wrong question. The question you should be asking is, ‘Does this community have in place what it needs to protect and promote recovery for individuals with serious mental illness?’ My answer to that question for Butler County, Ohio would be – ‘They are well on their way.’”

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scott

Scott Bryant-Comstock
President & CEO
Children's Mental Health Network

 

The following people made up the Children's Mental Health Network site visit team:
  • - Scott Bryant-Comstock, President & CEO, Children’s Mental Health Network
    - Dennis Embry, President/Senior Scientist, PAXIS Institute, Tucson, AZ
    - Ruth Fox, Executive Director, Allegheny Family Network, Pittsburgh, PA
    - Lee Gutkind, Distinguished Writer in Residence at the Consortium for Science, Policy, and Outcomes, Arizona State University
    - Martin Rafferty, founder and Executive Director, Youth M.O.V.E. Oregon, Eugene, OR
    - Maria Silva, Senior Supervisor, Allegheny Family Network, Pittsburgh, PA

Prevention science leads to success in school. Let's focus on what is behind the symptoms

5 Comments | Posted

Morning Zen Guest Blog Post ~ Kevin Dwyer

About six years ago I wrote a chapter on mental health promotion and prevention (with a professional colleague Dr. Erica Van Buren) in a book titled “Handbook of Youth Prevention Science” (Dole, B., Pfohl, B. & Yoon, J. Eds. (2010) New York & London: Routledge). Our chapter began with a scenario about an 11-year-old boy we called Jeremy who was being “disruptive, fighting, and calling his teacher a “mf.” He was an angry, lost soul who was academically way behind and had a record-breaking number of suspensions. Everyone in the school knew him including the principal, counselor, social worker, school psychologist, school secretary, cafeteria manager and community liaison police officer. The school labeled him as a “high flyer” who consumed staff time and energy to no avail. He actually spent more time in in-school suspension than in class.

He lived with his grandmother who was willing to do whatever the school recommended including “therapy” and “pills,” as well as “behavior contracts.” She took him to the mental health clinic that “wait-listed him as a priority for services.” So far behind academically, he was retained, making him older and bigger than his classmates. The school had many meetings about Jeremy, did evaluations and wrote and re-wrote an Individualized Education Program (IEP) placing him in special education services diagnosed as “seriously emotionally disturbed.”

The school’s social worker met with Jeremy and his grandmother at school and in his home. He told the social worker he hated school. His grandmother also told the social worker that Jeremy, “couldn’t read.” It took the social worker a little longer to find out from his grandmother that he had nightmares, no friends and “felt bad” about giving her grief.

In looking at his school history in kindergarten, he was described as a more anxious, frightened preschooler, not joining the group, not benefiting from the pre-reading instruction as easily as his peers. Although these problems were noted the social worker and school team could not find any documentation of the school’s interventions to provide him direct instruction or diagnostic instruction in those early years.

He started acting out late in first grade and the school’s focus moved quickly from the academic problems to addressing the disruptive behaviors with interventions such as “time-out,” behavior contracts class removal and, by second grade, in-school suspension.

In that chapter we wrote, “Academic and behavioral problems like those experienced by Jeremy often place students on a road that is paved with school adjustment difficulties, gradual disengagement from school and inevitable school failure and dropout.” (Ibid. page 45).

Good people with multiple sets of knowledge started what they saw as intensive interventions for Jeremy – but too late in this student’s educational history and even those interventions were still provided in a usual sequence of intensity, too little to make a dent in the complex of issues this student and his family faced. It is like doing an X-ray when the injury is muscular and an MRI is needed. It doesn’t show the depth of the injury and, therefore, results in misdiagnosis and therapies that will not work! With human behavior there is no MRI, there is no genuine diagnostic tool that can tell us what the problems are and what might work to address those problems. We only see want is on the surface, the behavior problems, defiance, anger, resistance to our interventions.

In that chapter, we called this pattern the “Domino Effect” of failure in learning that, when un-remediated, makes school so abhorrent to a child that he/she becomes a behavior problem. The fight-flight coping strategy kicks in and time after time the frustrated child says or does offensive things, off-putting things to those who want help him learn and behave.

The school does not understand his anxiety, and his inability to cope with failure. Rather than show he cannot read he fights with defiance and is then removed from toxic embarrassment in front of his peers.

He has so many strikes against him. His mother is in jail; his father is unknown. His caregiving grandmother is his only supportive connection. She can keep him safe from the violence and pain of his neighborhood but not from the frustration and pain of not learning to read.

In that chapter, we talked about the school’s responsibility to seeing that for some, for Jeremy, intensive school mental health services are essential to learning as are social emotional learning skills. And these services must be aligned with equally intense reading support. We cannot continue to let the Jeremy’s in our schools fall off the cliff.

In that chapter, we noted the good news! Schools are doing better for Jeremy. We talked about the tremendous improvement in school communities using best practices to prevent problems and promote academic and social emotional skills. We talked about the successful initiatives, programs and practices that are making a difference in children’s functioning. In fact the theme of that book and our chapter is success, a litany of components of successful mental health promotion, prevention and risk reduction as well as early and intensive interventions, all aligned to reap benefits for our children and families, and yes, even ourselves. Yes, systems are improving services and many more schools are providing successful initiatives that are reaching many more Jeremys before they become defiant lost souls.

Now, several years later a serious problem remains. We do not know how many schools are providing this array of effective best-practices to improve mental wellness and academic success of our children. Is the number 50% or 25% of our schools? Who is monitoring the necessary growth and effectiveness of these critical initiatives? Is this a responsibility of CDC, NIH, SAMSHA, Department of Education, States, universities, professional organizations, and advocacy groups? We have some good data on children’s physical health and our physical health promotion and prevention. We have loads of assessments of their academic progress and some information about its relationship to instruction. We have little data on the nation’s schools provision of the needed array of services that promote social emotional skills, effectively address early interventions and ensure that wraparound services the Jeremys need are provided. Although we have made strides in improving the availability of mental health service to these children we may still be using the least-to-most intensive continuum ineffectively. We may still be doing the too little - too late intervention model because we are focused upon the symptoms rather than the why behind those symptoms. Let’s start effectively measuring our success and how universal that success is for our nation’s children. 

Our children deserve to benefit from what we know works for all grade levels. Pre-school and kindergarten is where to start!     

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dwyerKevin P. Dwyer, M.A., a Nationally Certified School Psychologist, is an education and child mental health consultant.  He recently served as a principal research associate for the American Institutes for Research. For over 30 years he practiced school psychology in public schools and held several local, state and national leadership positions in the fields of mental health and education, being responsible for the design, development, implementation and evaluation of programs and practices, for improving school climate, safety, and wellbeing for the education, and mental health of children.  He has helped school staff in many districts use data to inform decisions on improving caring and connectedness with students and professional peers.  His work, publications, presentations, and practices have influenced public policy and the development of efficient, family-focused collaborative child service systems.  During his 30 years as a public school psychologist, he worked directly with over 10,000 children and their families as well as trained over 6000 educators. He provided psychological services to children, including those with disabilities and those whose anxiety and mental health problems blocked learning and adjustment.  He assisted teachers and staff in supporting a caring, inclusive school climate for all children.  In 2007, the Maryland Coalition of Families awarded Mr. Dwyer and his wife for their work in making schools more family friendly.  He served as president of the National Association of School Psychologist and was given its highest honor, the Life-time Achievement Award.  In 2000, he received the Tipper Gore “Advocacy award for improving the lives and mental health of America’s children” from the National Mental Health Association.

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