The children’s mental health field has lost a pioneer and an extraordinary advocate with the passing of Virginia (Ginny) Wood. The founding executive director of the statewide family-run organization, Families Together of New York State, Ginny was loved and highly respected. Her perspective, expertise, and consultation were highly valued. Her smile was quick and steady, her voice strong and unwavering. She thought carefully about the issues at hand and always told the truth.
Ginny Wood gave so much to so many and asked only that we keep our vision squarely focused on meeting the needs of children, youth and families.
Our thanks to Mary Armstrong for organizing a letter of remembrances to be shared with Ginny's family and our collective national family. Read the remembrances below and feel free to add your own.
Dear Family and Friends of Ginny,
Many members of Ginny’s national network of friends and colleagues are saddened by her passing. We would like to share with you our thoughts about Ginny’s contributions in the field of children’s mental health and what she has meant to so many of us personally. Some of our colleagues offered the following thoughts about Ginny as a mother, advocate, researcher, student, and above all, a friend.
Jan McCarthy, Georgetown University National Technical Assistance Center for Children’s Mental Health
Ginny was our partner for more than five years on a health care reform tracking project. She contributed her own family’s experience in trying to access mental health services to each of our site visits, to every discussion and analysis, and to every publication. She kept the project grounded in reality and never let us forget how families often see the system differently from administrators and providers. During site visits she ably facilitated the family meetings and helped the team learn what really worked or didn't work for families and kids. Her knowledge, her honesty, her sense of humor, and her kindness made her a trusted and effective facilitator.
In addition to the professional expertise Ginny brought to the project, she also brought her wonderful personality. We had many meals and late evening chats together. Ginny loved to gossip (in the good sense of the word) and wanted to know everything about everyone. She was interested in our lives and in sharing hers. She told us of meeting Bob for the first time, what a gentleman he was, and how happy he made her. I so remember her beautiful dimples and wonderful smile. She will be sorely missed by all who knew her.
Gloria Logsdon, Former Associate Commissioner for Children and Families, NYSOMH
I remember all that Ginny did for the Office of Mental Health and for the children and families of New York State when she was our parent advocate on the federal grant when I first came to the central office. She was an incredibly effective advocate in those days as she worked throughout the state to rally and empower families of children with serious emotional disturbances. Since that time I've had the privilege of continuing our friendship when she was in Tampa for the children’s conference and I was in Arizona on business or vacation over the years. I'm just glad that I was able to spend time with her last spring when we got together for dinner here in Tampa and for lunch in St Pete while she was staying with relatives there.
Our other link of course is that we both have a child with a disability, and although their diagnoses are different, the toll that that takes on our kids and on us as parents strengthened our relationship and brought us closer together.
I'll miss my friend Ginny, but feel very privileged for the times that we shared over the last 20 years, and hope that the fact that Ginny had such a profound impact on New York's children's mental health system, and in other areas of the country, will be a source of both pride and comfort to Ginny's family as they and we mourn her passing.
Trina Osher, Huff-Osher Consulting
I had the privilege and joy of collaborating with Ginny on several training and technical assistance activities. The most notable was “It’s a Great IDEA!” which enabled hundreds of families across the country become more effective advocates for their children who needed special education. It was always a pleasure to work with her, not only because she was skillful and knowledgeable but because she was passionate and dedicated. Ginny was courageous – even fearless – when it came to advocating for policies and practices that would improve the lives of children, youth, and families. I honor her life and will miss her dearly.
Barbara Huff, Federation of Families for Children’s Mental Health, Huff-Osher Consulting
I remember about two months after we opened up the National Federation office in 1992, I received a call from the director of policy at the National Mental Health Association. Critical system of care legislation was in front of a congressional committee with a New York congressman who needed a serious nudge to support it. I called Ginny, and she had a least 20 families contact that congressman in record time. Of course, he did, in fact, change his mind!
Sheila Pires, Human Service Collaborative
Ginny was a wonderful colleague and friend. I was so happy to work with her on the Health Reform Tracking Project, to which she brought her wisdom, patience, inquisitiveness, and good humor. The project was immeasurably enriched by her involvement. I also called on Ginny many times to get her insights into system changes in Arizona, or to brainstorm ideas to advance partnerships with families, and she was always so generous with her time and thoughts. I will miss her. My heart goes out to her family; please know that she was admired and cherished by so many of us.
Sybil Goldman, Georgetown University National Technical Assistance Center for Children’s Mental Health
I am very sad about Ginny. She and I traded emails since I heard about her cancer. I’m currently going through cancer treatment, and we talked about how shocked we each were to get the diagnosis, how difficult the treatments are, how important it is to be positive, and mostly how important it is to have the love and support of friends and family. Ginny was so loved because she was truly a wonderful person – funny, filled with optimism, hard working, a great partner on any project because she always wanted to be helpful and constructive. She was a tremendous advocate for families. I valued and respected her as a colleague in this work devoted to the mental health of children and young people and as a friend. I will miss her.
Mary Evans, University of South Florida
She taught many of us just what it is like to be a mother of a young person with significant mental health challenges. I also respected her for working so hard as an adult on her bachelor's degree.
Beth Stroul, Management & Training Innovations
I saw one of Ginny’s last emails in which she said that she was looking through her papers accumulated over 30 years and remembering both working and “funning” with her many colleagues. I am fortunate enough to count myself among those colleagues. Along with Mary, Sheila, and Jan, Ginny and I were part of a team that analyzed state financing for children’s mental health over a five+ year period. Sure we worked diligently, but our work was interspersed with regular doses of funning…..laughter, irreverence, and wine… which only improved the quality of our work. Site visits were involved, and Ginny and I both fought the others mightily for the chance to do the one in Hawaii and triumphed. The couple of extra days we took to enjoy the sun and the beach allowed us to connect in a way that we hadn’t been able to before, and she so generously spent much of the time helping me through a difficult time in my own life. I could talk about her pioneering work in the family movement, her impact at the state and national levels, the depth of her knowledge, and her passion. I will remember all of those things, but I will remember best the “funning” and will treasure the memory of Ginny not only as a colleague, but as a friend. Only 10 days ago, Ginny emailed me that I owe her a martini. I’m so very sad that she can’t join me, but I will raise my glass and toast her for all the lives she touched, including mine.
Mary Armstrong, Dept. of Child and Family Studies, University of South Florida
What a privilege it has been for me to assemble this letter! I feel so gifted because Ginny has been a friend and colleague for over 25 years. For me, first of all, Ginny was Jim’s Mom. Her courage and persistence in “never giving up” in efforts to get Jim the appropriate services and supports was such a witness for what advocacy is. Second, she was a friend. We shared so many things: a common background growing up in upstate New York, an absolute love of politics wherever we lived. And she was a colleague in many venues: partners in Albany working to improve the system of care, partners on the national level on several research projects. Ginny was also both savvy and smart and presented many unanswered research questions for us to address. I am so grateful that I spoke with her very recently and am so saddened by her loss.
Her memory will be cherished by us all.
Children's Mental Health Network readers are invited to share their remembrances of Ginny in the comment box below.
Last week we featured a Morning Zen post from Daun Kauffman where he appealed to Pennsylvania Governor Tom Wolf, to seriously address the issue of childhood trauma. A reader sent in a heartfelt response from the perspective of a mother with mental health challenges. She gave us permission to share her letter but wanted to make sure it was okay with her daughter first. You can read her daughters' response at the end of the post.
Dear Daun Kauffman and Zen,
I recently read an article in a post of Zen. My beloved, determined, and successful teaching daughter could have helped you write this article! But I cried because as I read, knowing that although, as an educator she helps students-- many like those mentioned in the article…I am certain that she also would feel a sense of recognition for herself as a child with ACE, according to your definition. I recently found one of her notebooks from middle school. It read, “I hate my mom! None of my friends can understand why because she is so nice. But I never have anything I want or need. I hate her!”
I’m tired…and I have been so very tired for a long time now, tired of mental illness associated with those who commit horrible violence or hurtful cruelty against children. I am a mother, was a single mother…and yes, I have a mental illness diagnosis. But I was never a cruel mother to my two children, although I have many heartbreaking regrets.
When my first was born, I had spent eight months in the preparation and, in knowing that she was a girl, prepared her bedding in white and pink dotted-swiss. She had nice quality clothes waiting for her, a pink and lace-clad Ms. Noah bunny and Italian leather baby shoes. I breast-fed on demand and could recite from Your Child’s Self Esteem by the time she was 1. Her dad, she, and I lived in a 1-bedroom apartment, but she had lots of attention, as I was a stay at home mom. There were many colorful and stimulating baby toys, lots of books that were read to him by both her father and me. And there are countless photographs depicting our little lives during those early years.
Our lives were a little more stressful when my son was born in the bitter Kansas winter of l990. Our little family had just endured a layoff of my husband and relocated from the Nashville, TN area. Everything I had read supported breastfeeding as the best way to protect a baby from illnesses, so once again I nursed my child until he was one year old. He had books, toys, and songs too. He was so bright-eyed from the day of his birth! I continued my college education, even though our family had just one car. My children and I would meet my husband after work, and they waited on campus for me to attend my night class 1 evening each week.
Yes, it was difficult and not the most desirable situation, but one night a week they waited for me and then on Saturday, I spent the morning in class again. These were the early days of my children’s lives. This, along with Sesame Street, Minnie Mouse, homemade bed linens and posters of all the Disney Princesses. Little trucks, Little Tikes, and sandboxes--these were the days of books read each night before bed, and the “3 Little Kittens” who nightly lost their mittens! My daughter’s nighttime song was “Brahms Lullaby” and for my son, it was “Swing Low Sweet Chariot”…lullabies sung to them by a mother who loved them both dearly. Their dad sang to them too, “Muffin Man”. Our Thanksgiving as a little family alone in the Midwest was something like this: the four of us colored pilgrim hats, and Native American headbands to wear at the Thanksgiving table where we told the story of the Pilgrims and the Native Americans celebrating a harvest and harmony together in peace.
That Thanksgiving, I was told by a college friend that my children were “overindulged” because of this interesting way of celebrating.
Then slowly, everything began to change. I met some friends at school who were young, unmarried, and who liked that I could buy the appetizers and drinks on my husband’s American Express card. I was naïve and lonely for friendship. As the mother of 2 young children, I needed to be at home when not at school or the library. But with new-found friendships and attention that accompanied a major weight loss, I began spending more and more time with my new school friends. This wasn’t the right thing at that time in my children’s lives… they needed the stability that had been and a structure for their young emerging selves.
But things worsened. In the spring of l992, the stress of school and a deteriorating marriage broke me; I had a breakdown that landed me in the Psych ward of a local hospital for 2 weeks and in a psychiatrists’ office in Topeka, Ks for the next 4 years; which has turned into most of my adulthood! Then, the meds were debilitating…they made me so drowsy during the day that I could barely function; when they created a terrifying restlessness that confused me all the more, hives happened and another medicine was ordered to counter the effect of the medicine creating the restlessness and hives! These were the days when meds were given, and no information nor warnings allowed. I sincerely believed that the restlessness and hives were just further indications of being increasingly crazy, of descending further and further into madness.
My life after my breakdown was bleak and heartbreaking, but worse than anything I suffered… My children lost the attentive mother they had grown accustomed to and known since their births.
These two children have been in the forefront of my mind despite 23 years of living with Bipolar Depression… precisely 23 years next month. As a former educator, (yes, I managed my own classroom in middle school in 95-96), my heart goes out to children who are abused both physically/sexually and emotionally. As I think back on the years my children grew up… there was indeed some neglect for which I can never forgive myself. But it was not a neglect from callous uncaring; I quit helping with homework when my son came home from Elementary school and said his math teacher was “tired of his math homework always being wrong.”
There was a divorce when my daughter was 10 and my son only six years old. As a woman trying to be “Normal” but knowing that I carried a diagnosis most people feared, I was shy and a wallflower at Brownie functions and could feel the silent judgment of the other mothers. Because of that heavy silence, I never attended a PTA meeting at their Elementary school. They played soccer with the other middle-class kids, but I never knew if the child support check would arrive timely or 3 days, one week, or 2 weeks late. Curiously, accounting glitches were the norm. Needless to say, my credit suffered and worrying about where the next loaf of bread would come from or pleading with the electric company to leave the lights on 3 more days was taxing, stressful, and something not hidden well. My children never saw me crying in the night and despite all my sadness and depression, I tried my best to be “up” when they were home and around.
The neglect that my children suffered was not some deliberate aberration, some scary threatening aspect of mental illness so often depicted in the media. We were poor; and we had a tiny or old car, always a used car. We lived in a 2-bedroom apartment/duplex but they had their own rooms because I so believed in children having their own spaces to call their own. My bed was a day bed in the living room, and I dressed in the 1 bathroom. But at night, my night meds created deep sleep… slumber that kept me from reminding them to brush their teeth or demanding lights out. When they argued, I didn’t have the energy or confident courage to stand my ground—I often gave in and was a push-over mom.
Finally, I discovered donating plasma, for 2 years I made 45.00 a week selling the fluid from my blood twice weekly. It bought after school snacks, put gas in the car, and also gave my youngest son allowance each week after my daughter moved in which her dad and his new wife. I now have Rheumatoid Arthritis and Lupus….I don’t know if there is a connection, but certainly donating plasma isn’t the most healthy way to earn 45.00 a week!
I write this to you as a mother who was a single mom with a mental illness. Never in my life would I deliberately hurt my children! I would give my life for them gladly if needed and never was any of the neglect deliberate, but sadly they endured neglect nonetheless. What I needed was help…not judgments and rumors; assistance with stabilizing my home… not deliberate efforts to destabilize. And what I needed was knowledge, structure, and a demonstration of caring for me as a mother of my two wonderful children from my community—not further searing isolation. I had some wonderful doctors and therapists over the years, but the community seemed so unenlightened about mental illness and supporting single moms.
My children have memories of lack. Although their father and I were increasingly incompatible and hurtful to one another in differing ways, I would give anything if I could go back to those Thanksgivings with homemade head-dresses and black pilgrim hats so that the years of their feeling lack could be undone.
I’m glad there are astute teachers, like you and my daughter, to help the children with ACE… holistic helping, with true caring, empathy, and kindness-- rather than indifferent judgment, is key to helping those children...helping those families.
Daughters response to Deborah's request for permission to post in Morning Zen
"No, I think it is great to read that because that is what I have wanted you to understand for a long time. My ACE is really high compared to people I associate with, but lower than the kids I teach. I have worked hard to overcome the things that could have so easily brought me to a lower standard of living, but I always say that if the worst that has come from my childhood is being a young mom and cursing like a sailor, I turned out alright. I'm not embarrassed in any way. I tell people about my childhood all the time. It has given me a lot of insight and empathy. Publish away."
Morning Zen Guest Blog Post ~ Daun Kauffman We are sharing this letter from Daun Kauffman to Tom Wolf, Governor of Pennsylvania, as an example of how any of us, armed with passion, good data and a pen, can be an effective advocate.
Dear Gov. Tom Wolf and Education Secretary-designee Pedro Rivera:
I write regarding injured, marginalized children in Pennsylvania schools, to ask that you include them explicitly in a broad, “Healthy PA” paradigm in your new administration.
I am an educator serving children in elementary and middle school classrooms in my own neighborhood in a major urban center for 14 years. I advocate today regarding an aspect of education rarely discussed, but clearly visible to experienced classroom educators.
Childhood trauma is a tragic, life-changing assault on the minds and lives of children in our schools. Unaddressed (which is the general, present state), its ravages continue, life-long. This applies to all neighborhoods in Pennsylvania.
Childhood Trauma is not "poverty." It is a response of overwhelming, helpless terror to events some call “adverse childhood experience” (ACE). It can result when adults who are supposed to love and protect, instead, cause hurt: physical, emotional and sexual abuse; physical and emotional neglect; single-parent homes (because of separation, divorce, incarceration); violence; community violence; substance abuse; and mental illness. When a child is dealing with chronic ACEs in three or more categories, the impact can be devastating personally. It is powerful and shockingly prevalent.
We won’t have a successful education paradigm, or even accurately interpret academic results, until we explicitly confront trauma’s overwhelming impact.
Childhood trauma in our education system The intersection of our educational system with childhood trauma is the most accessible and immediate aspect of this heartbreaking scourge. Dealing first with childhood trauma in education is analogous to putting the customer and the customer’s needs first in business. Dealing with childhood trauma is a prerequisite to understanding our education results. Understanding results, in turn, is a prerequisite to interpreting our many “reform” efforts with curriculum, pedagogy, and assessment, as well as training and retention of staff.
Then, understanding the childhood trauma variable is crucial for accurate reflection about effective education investment in Pennsylvania.
Successful, trauma-competent schools require consistent, system-wide training and response. Conversely, I can assure you from hard experience, with scars, that attempting to “educate” first, without understanding and without dealing with the neurobiological impacts of childhood trauma is exactly like putting the cart before the horse.
It is crucial to explicitly deal with this "elephant" before we can clearly see and interpret classroom results related to any other reform or investment.
The prevalence is stunning! Childhood trauma affects 20 percent to 50 percent of children impacted by three or more categories of adverse childhood experience — a prevalence greater than among English language learners and students with learning disabilities (in some urban locations a prevalence greater than both combined). Researchers define the scope of childhood trauma as massive, "an epidemic," or a "national crisis," particularly in urban areas.
Source: Centers for Disease Control and Prevention, National Center for Injury Prevention and Control, Division of Violence Prevention
This was a huge, quantitative study lasting several years, involving more than 17,000 participants. Ultimately, CDC researchers found that roughly one-fourth of suburban, middle-class, mostly white, working folks with medical insurance had experienced three or more ACE injuries!
The number is significant, because experiencing three or more ACEs correlates with doubled risk of depression, adolescent pregnancy, lung disease and liver disease. It triples the risk of alcoholism and STDs. There is a five-fold increase in attempted suicide. It doesn't just go away. Later, if unaddressed, it results in work absenteeism and lost productivity as measured in billions of dollars.
The classroom challenge is even bigger than the incidence of ACEs. The crisis impacts all the children in the same classroom: When you experience the classroom dynamics and disruptions from one anxious or angry, trauma-impacted child, triggering another trauma-impacted child, who attacks a third child trying to work. The epidemic diverts teaching and learning focus for 100 percent of the classroom. It dramatically clouds our understanding of academic results. (I wrote a much more detailed anecdotal narrative called "Danny goes to school.") Partly because of its prevalence, Pennsylvania is dangerously close to "normalizing" childhood trauma impacts in our public schools.
The children are not bad or sick; they are injured. At best they are invisible in the data and analyses. At worst they mislead our interpretation of the data and resulting prescriptions. Presently, attempts to analyze data all miss the massive scale of childhood trauma injuries completely. (Try asking for ACE-adjusted, education data.) Pivotal decisions are then based on these flawed analyses.
Sadly, Childhood trauma is still "the elephant in the room." Unrecognized or unacknowledged and unresolved, it obstructs education efforts and destroys lives.
You can be game changers
Use your positions as governor and education secretary to flood a spotlight on “the elephant in the room." Help grow awareness. Expose trauma’s classroom impacts on a broad base, across our state, via all of your communication tools.
To the extent that monies can be allocated, or exhorted, the next priority beyond awareness would be to invest in rapid, broad training for all educators.
Construct a new level of close coordination between medical, educational and social-services professionals for our state. This means screening children as they enter our schools, clearly a potential hub of neighborhood-based access. Then providing cognitive and social supports as explicit, statewide priority — essentially the “community school” concept, but with a specific goal of addressing complex childhood trauma.
Eventually children themselves should be taught “self care” for trauma impacts as part of health and/or social studies curricula.
Ensure that data is fairly gathered and clearly presented for variable trauma impacts.
You are probably ahead of me in seeing much broader benefits as a longer term legacy for Pennsylvania and even for our nation. We have a choice to address the power and prevalence of childhood trauma, while children are still developing. It’s a siren call to lead now, to address trauma explicitly in childhood, when healing can happen more quickly, neurologically and academically, which in turn will lead to better social and financial productivity for our state in adulthood.
Thank you for making education a priority and thank you for giving educators a voice.
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Stand with trauma-impacted children, call or Email or Tweet to Governor Tom Wolf and Pedro A. Rivera:
Keep it simple: ask them to publically confront childhood trauma in education for Pennsylvania, or email/tweet this letter. It will only take a moment.
Daun Kauffman has been teaching in Philadelphia public schools for 14 years. This post originally featured on the Newsworks blogsite.
"I live, and work, and worship in the Hunting Park neighborhood of north Philadelphia, with students we’ve served. The Philadelphia Inquirer has described the neighborhood as 'a gritty, drug infested barrio'. Nevertheless, my neighbors and students are steadfast, creative and inspiring in the way they wrestle with many life challenges. They have taught me much."
February was quite the month for SAMHSA, firmly in the crosshairs of the House Energy and Commerce Subcommittee on Oversight and Investigations, chaired by Rep. Tim Murphy (R-PA), who any day now, will reintroduce his Helping All Families in Mental Health Crisis Act. On February 4th, the GAO released a report entitled “Mental Health: HHS Leadership Needed to Coordinate Federal Efforts Related to Serious Mental Illness", which identified a lack of interagency coordination at the senior management level; on February 9th, SAMHSA released a fact sheet showing the variety of efforts focused on the severely mentally ill population, and a blog post by Administrator Hyde about how SAMHSA supports individuals with serious mental illness and serious emotional disturbance. And then on February 11th, Chairman Murphy's sub-committee held a hearing with SAMHSA officials and GAO to discuss the results of the GAO report. You can read our reactions to the hearing here.
In the midst of this swirl of activity are ongoing accusations of SAMHSA shunning the SMI population, leadership not understanding the definition of SMI, mission drift, and laser-focus and somewhat dramatic scrutiny on specific activities, such as conferences, websites and coloring books.
Okay folks, everyone take a breath. Let's slow this train down before it gets completely out of hand. I encourage all of you to read the SAMHSA fact sheet and blog post to get up to speed with some ongoing SAMHSA activities related to the SMI population. The fact sheet and blog post by no means are the end all comprehensive description of what SAMHSA does, nor do I think they are intended to be. Do they speak to the interagency coordination questions raised in the GAO report? Do they address the perceived inequity in distribution of resources to the SMI population? Do they instill confidence that the leadership of SAMHSA understands the issues facing the SMI population? To all of these questions, some would say yes and some would say no. But instead of shouting each other down, let's take the fact sheet and the blog post by Administrator Hyde and use them as a starting point for conversation. There will be plenty of opportunities to both criticize and praise SAMHSA-led efforts across the spectrum of serious mental illness, but ya gotta start somewhere, so why not here?
Read up, Network faithful, and then encourage your favorite congressional representative to read up as well. And while you're at it, offer your thoughts on how the activities described in these documents fits with your understanding of what is needed, but above all, be clear on your baseline of understanding of what the purpose of SAMHSA is and the many things SAMHSA does. It may or may not be totally to your liking, but it is undeniable that there is much going on.
“Facts do not cease to exist because they are ignored.” ― Aldous Huxley
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Scott Bryant-Comstock President & CEO Children's Mental Health Network
A few months ago I met your son. He said he would be waiting for us in the Berkeley park near where he sleeps outside at night, but at the last minute he called and was in San Francisco. He said he was at “the Mrs. Doubtfire house” with a photograph of his best friend, and that the photo showed numbers and codes predicting Robin Williams’ suicide. He found the house where Williams made one of his films, and was trying to talk to the owner. It was all part of a complex plan, marked mathematically in signs and omens he was collecting.
We drove across the Bay, worried. Were we too late? Would he be arrested and end up in the hospital again, this time for trespassing and harassment, a psychotic man caught bothering someone at a private residence?
When the GPS showed we were getting near the address he gave, I started to see people milling around, a commotion, cars stopped. My first thought was that something had happened. Maybe we weren’t in time, maybe he was already in trouble with the police, arrested at the house he seemed obsessed with?
At Steiner and Broadway we found your son, sitting on the sidewalk — but he wasn’t alone. He wasn’t the only one interested in the Mrs. Doubtfire house. The sidewalk was strewn with flowers, and dozens of other people were also there. What first seemed crazy, now seemed normal: many people, like your son, were drawn to the private residence where a Robin Williams film was made, to commemorate the actor’s suicide with a pilgrimage.
I walked up to your son and greeted him, unsure how this young disheveled man would respond to me. I had been told he was considered “severely mentally ill,” the worst of the worse, so beyond reach in his delusions that clinicians were considering using force to bring him to the hospital for treatment. But as soon as we made eye contact I was surprised. There was a clear feeling of affinity and communication. He explained in rapid speech about the numbers and messages on the photo, Robin Williams’ middle name, and the sidewalk code. It was all part, he said, of an alphanumeric psyche that communicates to him through signs and coincidences.
It was exhilarating and exhausting keeping up with the math calculations, anagrams, and nimble associations that flowed when he spoke. But he also at times talked normally, planned a walk up the street to a coffeehouse, explained what had happened about our meeting. I lost the thread at different points in our discussion, but one thing was clear: your son is brilliant. I was not surprised when he told us he got a perfect score on the SAT. “It was easy,” he explained when I asked. “Anyone can get a perfect score if they take the practice tests.”
We were quickly engrossed in conversation, and when he suddenly wove the author Kurt Vonnegut into the pattern, my eyes widened. Just moments before our meeting I was talking with my colleague, telling my own story of meeting Vonnegut. And now here your son was mentioning the author. I was amazed by the coincidence. As your son ’s talk became wilder and more complex, referencing the Earth Consciousness Coordinating Office, SEGA Dreamcast, and numerology, and as he did math equations instantly to prove his obscure points, I sensed an uncanny power and clairvoyance in the air. I was in the presence of someone in a different reality, but a reality with its own validity, its own strange truth. A different spiritual view.
Perhaps I am eager to emphasize your son’s talents because today he finds himself so fallen. I don’t romanticize the suffering that he, or anyone, endures. His unusual thoughts and behavior led to a diagnosis of schizophrenia, and seem to be part of deeper emotional distress he is struggling with. I don’t romanticize because I’ve been through psychosis and altered states myself. I’ve been diagnosed schizophrenic, many years and many life lessons ago, moving on with my life only after I found ways to embrace different realities and still live in this one.
So when we met your son I was completely surprised. The “severely mentally ill man” I was told needed to be forced into treatment was intelligent, creative, sensitive – and also making sense. Like someone distracted by something immensely important, he related to us in bits and pieces as he sat in conversation. Living on the street and pursuing an almost incomprehensible “calorie game” of coincidences on food wrappers isn’t much of a life, perhaps. And maybe it’s not really a choice – at least not a choice that most of us would make, concerned more with getting by than we are with art, spirit and creativity. What surprised me was the connection I had with your son. Because I took the time, and perhaps I also have the background and skill, I was quickly able to begin a friendship.
By taking interest in his wild visions, not dismissing them as delusional, and by telling him about my own mystical states, not acting like an expert to control him, we began to make a bond. I spoke with respect and interest in his world, rather than trying to convince him he “needs help.” What, after all, could be more insulting than telling someone their life’s creative and spiritual obsession is just the sign they need help? That it has no value? By setting aside the professional impulse to control and fix, I quickly discovered, standing on that cold sidewalk and then over hot tea in a cafe, that your son is able to have a conversation, can relate, communicate, even plan his day and discuss his options. Some topics were clearly pained, skipped over for something else, and he was often strangle distracted — but it was, after all, our first meeting, and I sensed some terrible and unspoken traumas present that were still not ready to be recognized. To me, clearly, he was not “unreachable.”
That we had a connection in just a short time made it very hard for me to understand why you or anyone would want to use force — to use violence — to get him into mental health treatment. A traumatic assault, instant mistrust, betrayal, restraint, then a complex web of threat, coercion, and numbing medications to impose compliance, possibly a revolving door of re-hospitalization, more medications, more threats and force and police… Surely creating a relationship, building trust, and interacting with compassion over time is a much better way to show concern and offer help?
When you think you know what is best for someone, it might seem faster to send a patrol car and force them off the streets and into a locked hospital cell. But would that really be safer? For who? Or would it push someone farther away, undermine the connection needed to find a real way out of crisis?
You’ve become an outspoken legislative advocate of empowering clinicians to intervene drastically in the life of your son and others like him. In pushing for so-called “Laura’s Law” the idea is to pressure, through force, compliance with medication and hospital care. Your son is today held up as a perfect example of why force is needed. I share your desire to help people in need; that’s why I went to meet your son in the first place. And I agree that our broken mental health system needs fixing, including by legislation and new services. I do want your son to get support. I want there to be more resources, more access to services, more connection, more caring, more healing. But I do not see your son, or people like him, as so “unreachable” that they cannot form a relationship with someone genuinely interested. That just wasn’t the man I met that day. I don’t see him as so less than human that his own voice and perspective should be ignored, rather than understood. I don’t see strange beliefs and outsider lifestyle on the street in any way justify the violence of forced treatment. I don’t see him as any different than any other human being, a human who would be terrible damaged by the violence of force, confinement, and assault, regardless of it being perpetrated in the name of “help.”
That day I met a man possessed by a mysterious artistic and spiritual quest that others around him can’t understand. He is homeless and perhaps very afraid deep down, but he is a person with feelings, vulnerabilities, emotions. Alongside the rapid fire associations that I couldn’t keep up with, he was also capable of connecting. His pilgrimage to Robin William’s Mrs. Doubtfire house wasn’t some lone obsessive symptom, the sign of schizophrenia and a broken brain, but understandable when put in context. His ranting was not a meaningless mutter but a creative and encyclopedic stream of enormous intellect. Yes he seemed to be in touch with some other reality, an altered state that demanded most of his attention. Yes I would love to see him living indoors, less afraid, more cared for and more caring for himself. I’d like to see many homeless people in the Bay Area have the same. But no, this is not a man I would want to force into restraints, injections, and confinement. I would not want anyone to be subjected to such violence — and it is violence, as people who have endured it will tell you. I would not want to destroy my emerging friendship with him with such an attack, because I know it is friendship — long, slow, developing connection and understanding — that can truly heal people who are tumbling in the abyss of madness.
Concerned and wanting to help, wouldn’t it be better for us to find the resources to gently befriend your son, to learn more about him, create trust, and meet him in his life and world? Even if this took patience, skill, and effort? Isn’t this how we want others to approach us if we seem, in their opinion, to be in need of help? Don’t we want our voice respected if we disagree with someone about what is best for us? How can friendship and trust possibly come out of violence?
Again and again I am told the ‘severely mentally ill’ are impaired and incapable, not quite human. I am told they are like dementia patients wandering in the snow, with no capacity and no cure, not to be listened to or related to. I am told they must be controlled by our interventions regardless of their own preferences, regardless of the trauma that forced treatment can inflict, regardless of the simple duty we have to regard others with caring, compassion, and respect, regardless of the guarantees of dignity we afford others in our constitution and legal system. I am told the “high utilizers” and “frequent flyers” burden services because they are different than the rest of us. I am told the human need for patience doesn’t apply to these somehow less-than-human people.
And when I finally do meet the people carrying that terrible, stigmatizing label of schizophrenia, what do I find? I find – a human being. A human who responds to the same listening and curiosity that I, or anyone, responds to. I find a human who is above all terrified, absolutely terrified, by some horrible trauma we may not see or understand. A human being who shows all the signs of flight and mistrust that go along with trauma. A person who may seem completely bizarre but who still responds to kindness and interest – and recoils, as we all would, from the rough handling and cold dismissal so often practiced by mental health professionals. Listening and curiosity might take skill and affinity, to be sure, when someone is in an alternate reality. But that just makes it our responsibility to provide that skill and affinity. Do we really want to add more force and more violence to a traumatized person’s life, just because we were not interested in finding a different way?
Your son may be frightened, may be in a different reality, may spend most of his time very far away from human connection. But his life, like everyone’s, makes sense when you take time to understand it. He deserves hope for change, and he deserves careful, skilled efforts to reach him and to connect – not the quick fix falsely promised by the use of force.
Even under the best of circumstances mothers and sons sometimes have a hard time communicating. Many young people refuse help – just because the hand that offers it is the hand of a parent they are in conflict with. Perhaps the need for independence is stronger than the need to find refuge in the arms of a parent. Perhaps children flee their parents in spite of themselves, because of some complex reality they are seeking to overcome. So maybe the help that is needed is not just for the sick individual but for repairing a broken relationship. I say this because after my own recovery from what was called ‘schizophrenia’ I became a counselor with families. I see again and again — and the colleagues I work with also see again and again — that by rebuilding relationships, not tearing them down with force, healing can occur. A young person whose promising life and career were interrupted by psychosis can regain hope for that possible future.
A simple look at the research literature over the past 50 years shows that recovery from what is diagnosed schizophrenia is well documented and a real possibility – for everyone. Not a guarantee, but a possibility worth striving for. It is only in the past few decades that we forget this basic clinical truth about the prognosis of schizophrenia and psychosis, and instead predict chronic, long term illness for everyone. Such a prediction threatens to become a self-fulfilling prophecy, as we lower our expectations, give up hope, and relegate people to a lifetime of being controlled and warehoused in the identity of “severely mentally ill.”
I do believe help is need, help not just for your son, but help for everyone in the family affected by the strange and overwhelming experience of psychosis. But when parents, who are alone and desperate to change their children, resort to pleas for force and coercion, they risk sacrificing the very connection and bond that can be the pathway towards getting better.
I hear the claim that Yes, we should respect the right to refuse help, but when people are suffering so greatly and everything else has been tried, we have no choice but to infringe on freedom. This is false. We haven’t already tried everything we can. We have not tried everything we can with your son, or with you. There is a huge wellspring of creative possibilities, skill, and resources possible if we just direct our mental health system to try harder and do better for you and your son — and the many people like you. It takes money, vision, and political willpower, but people struggling with mental illness deserve the dignity of true help, not false promises.
We can, and must, do better. We must think outside of the false choice between coercive help or no help. We might start by asking people who have recovered from psychosis – and there are many – what they needed to get better, and give them a leading role in shaping our mental health policies. We might start by respecting people’s decision to avoid treatment, and seek to understand the decision rather than overpower the person making it. When you have been traumatized by those offering help, avoiding treatment might even be a sign of health, not madness.
Maybe some of us, when we are terrified, discover different realities to hide in. And maybe some of us, when we are terrified about people we love, reach for desperate measures – like forced treatment policies and Laura’s Law – to help. I believe that people who are afraid, perhaps such as your son and yourself, need caring, kindness, patience and listening. Trying to force you, or him, to change may only drive us all farther apart.
I believe it is often the most brilliant, sensitive, artistic, and yes sometimes even visionary, telepathic, and prophetic people who get overwhelmed by madness. We need to discover who they are, and meet them as we would ourselves want to be met, rather giving up hope for human connection.
At the cafe where we talked, the waiter was polite, but kept his eye on your son, seeing only a dirty and homeless schizophrenic, not the human being I was getting to know, not the son you love dearly. When we said goodbye I tried to imagine what it would be like, living rough on the street, facing suspicion or worse from everyone I passed. I imagine it would be lonely, that I might fall asleep at night missing my childhood home, missing my mother.
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Will Hall, MA, DiplPW is a counselor, consultant, and community development worker in private practice with families, individuals, couples and groups. A survivor of a schizophrenia diagnosis and leader in the recovery movement, Will has taught in more than 12 countries and gained international recognition for his work with mental diversity, including coverage in the New York Times, The Guardian, and Newsweek. His work supports individuals, families and groups to find new ways to understand and live with altered states, different realities, voices, paranoia, mania, and "psychotic" experiences. Will has a certificate in Open Dialogue from the Institute for Dialogic Practice, a Diploma in Process Work, and has studied somatic, trauma, and Jungian approaches. He has led trainings for professional staff and case supervision with psychiatrists and therapists, is co-founder of Freedom Center, past Director of Portland Hearing Voices, longtime organizer with The Icarus Project, and co-founder of PracticeRecovery. Will Hosts the FM show Madness Radio and is author of The Harm Reduction Guide to Coming Off Psychiatric Medications, translated into 9 languages. He is longtime meditator and yoga practitioner, and lives in the San Francisco Bay Area with his family. Learn more about Will at www.willhall.net, www.practicerecovery.com, or www.madnessradio.net.
So often there are tears. Tears of relief, tears of gratitude, that letting go when you know you’re finally understood.
It is not a family reunion. It is not an alumni gathering. It is not a mental health support group, not in the traditional sense. You are among total strangers; you don’t know anyone. You may speak the same language, or you may rely on translations, interpreters. You have never seen these people before, yet they seem to know you on a different, deeper level than some of your closest friends, co-workers, even family.
You’ve resisted these sorts of meetings till now, accustomed over your lifespan to being an outsider, to not belonging, to being left, to moving on either physically, emotionally, or both. But something or someone pulled you here.
You’ve just learned you’re a Third Culture Kid, and you’re at your first gathering with other TCKs. You’re part of a scattered tribe, and you’ve finally, finally found your community, and it spans the globe.
You always thought you were weird because you didn’t fit in. Your parents kept moving, following their jobs from place to place, and you moved with them. You were too often the new kid in class, and you got tired of trying to explain yourself, so eventually you just stopped, or picked up a shorthand way of saying, yeah, I’m new here, so what.
Or you didn’t move, but you grew up in a different country from the one your parents called home, and you went to an international school, not a local one, and all your friends moved, over and over, and every time you went back to school, you didn’t know if they’d be back or if you’d have to make new friends. Your parents kept telling you you were American, or Dutch, or Japanese, or whatever. But you weren’t living in the US, or in Holland, or in Japan, so you knew you weren’t one of them, not really.
You went back for short visits to the place where your parents grew up and discovered you were a foreigner, and they might say they were going home but you knew you were just on vacation. Your cousins and aunts and uncles and grandparents were all there and you felt awkward but you were polite and pretended to be excited to see them again, though you hardly remembered them from the previous summer.
When you finally went for an extended time, for college, you figured it was just taking you a little longer than usual to acclimate. You didn’t “get” the place, didn’t get the social rules or innuendos, didn’t understand the points of reference. You thought you’d been prepared for this, by your schooling, your visits, your parents, your language, but it felt like you were moving to a brand new place again, it felt like culture shock. It WAS culture shock.
You stopped telling fellow students where you’d lived because they acted as though they hadn’t heard of these places and maybe they hadn’t and you despaired at their ignorance of geography. They acted as though you were exotic, and you knew you were not. You didn’t understand their lack of interest in world events, in places far away -- they only seemed interested the way tourists are interested, superficially, in the scenery. You felt angry, restless. You felt invisible.
When you went back home for breaks -- if you got to go back, if your parents hadn’t already moved again -- you found you were different. You’d grown out of your old skin and your new one didn’t fit.
You felt unhappy, lonely. You began to wonder who, really, you were, and where you belonged, if you’d ever find that place where you could feel comfortable, right. You sought help. Your counselor thought you were depressed, suggested medication, yoga. Maybe it helped. Maybe it didn’t.
One day you met someone who told you there was a whole world of people like you, and that they all felt like you did, at one time or another or maybe even still. And you were curious, because you’d always felt so alone. And you agreed to go to a meeting.
So here you are, at your first TCK meeting, and nobody asks you where you’re from, they ask how many places you’ve lived in, and nobody is surprised at where you’ve been or how you feel, they ask what you are doing about finding others like you, where to find them, how to form a meet-up group.
The parents among them want to know how to raise their kids differently, how to keep them happy in their mobile lives, keep them connected with stationary parents and friends, maintain relationships in a moving world. Husbands and wives want advice on how to maintain careers and independent identities as they accompany their spouses on international assignments.
You learn that the number of TCKs is multiplying exponentially -- that there are several million American children overseas at any given time and more and more children of other nationalities are also living away from their birth homes.
You learn that there are whole departments in universities dedicated to intercultural studies and understanding, that there are student groups called Global Nomads, that transnational cultural understanding and migration studies and post-post-Colonial literary studies are all looking at the TCK phenomenon.
The meeting is buzzing with long-held energy, exploding with ideas.
And at long last you feel like you’ve found your place. Your people. Your community.
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Nina Sichel is co-editor of the collections Writing Out of Limbo: International Childhoods, Global Nomads and Third Culture Kids (2011) and Unrooted Childhoods: Memoirs of Growing Up Global(2004). She leads memoir-writing workshops in the Washington, DC area and continues to collect stories and research about international and cross-cultural childhoods. For more information on TCKs, readers can visit her Facebook page, which includes links to articles of interest, book recommendations, and connection with other TCKs.
On February 11th, the House Energy and Commerce Subcommittee on Oversight and Investigations, chaired by Rep. Tim Murphy (R-PA), held a hearing to learn more about the results of a recent GAO report entitled “Mental Health: HHS Leadership Needed to Coordinate Federal Efforts Related to Serious Mental Illness.”
Why a hearing? In 2013, Congressman Murphy introduced the Helping Families in Mental Health Crisis Act, designed to focus on programs and resources on psychiatric care for patients and families in most need of services. One of the key components of the bill focused on how the federal government coordinates efforts to provide services and supports for individuals with serious mental illness.
The sub-committee requested the GAO to conduct a survey and write a report of findings so they could get a better idea of how mental health programming efforts were coordinated across eight federal agencies. SAMHSA’s role in promoting coordination of programs focused on mental illness across the federal government was of particular interest to members of this sub-committee.
What did the GAO report recommend? There were two primary recommendations from the report.
GAO recommends that HHS establish a mechanism to facilitate interagency coordination across programs that support individuals with serious mental illness. The recommendation to increase interagency coordination at the federal leadership level is a no-brainer in our book. For those of you who have been involved in federally funded SAMHSA grants focused on improving services and supports for youth with serious emotional disturbances and their families, you know that a key grant requirement for receiving these funds has always been to establish strong interagency collaboration and coordination both at the programmatic and upper leadership levels. At the federal level, this recommendation asks nothing different from HHS leadership than is asked of states and local communities receiving SAMHSA funds.
GAO also recommends that DOD, HHS, DOJ, and VA document which programs targeting individuals with serious mental illness should be evaluated and how often such evaluations should be completed. The recommendation to clarify and prioritize evaluation efforts would provide a welcome opportunity to devote evaluation focus to programs that historically may not have had much in the way of funding for evaluation but may be producing promising results. I have heard on many occasions the “chicken and egg” conundrum of “How are we supposed to prove the effectiveness of our program if you don’t give us adequate funding to evaluate it?”
How did SAMHSA respond to the recommendations in the GAO report? Unfortunately, and for me, quite stunning, the official SAMHSA response from Administrator Pamela Hyde was to disagree with both recommendations. If you watch the video of the hearing (included at the end of this post), three things become evident:
Sub-committee members were looking for concise, direct answers to their questions about the coordination and evaluation of federal efforts focused on individuals with severe mental illness.
Administrator Hyde was responding to sub-committee member questions with answers that focused on the complexities inherent in coordinating and evaluating federal efforts focused on severe mental illness. She repeatedly emphasized the need for multiple strategies in answering their questions, often elaborating with multi-layered explanations, and more often than not, concluding with a response of “I will have to get back to you on that.”
As the hearing went on, massive frustration built up on both sides. A few congressional committee members started behaving badly, and one used badgering tactics in a line of questioning with Administrator Hyde. The display of disturbing etiquette resulted in the admonishment from the Co-chair and recognition from the Chair on the importance of civility when questioning witnesses.
There were many examples of a sort of cognitive disconnect between the questions being asked by members of the committee and the responses given by Administrator Hyde. Here is one example:
During an interchange with Congressman Kennedy, who was asking what should be done to improve coordination among agency partners, Administrator Hyde said, “We need to push our grants to require coordination at the state and local level.” She went on to say that the GAO recommendation (for interagency coordination) was “about a specific infrastructure piece that wasn't relevant to people on the ground - more of a bureaucratic recommendation.”
Linda Cohn of the GAO, lead author of the report, clarified that the GAO wasn’t suggesting an “either or.” She said “lack of coordination at the federal level inhibits our understanding of the federal footprint in this area. What are the programs in place? We started from programs; populations served, etc. People don't fall into tidy categories, which is why this coordination becomes so important. Are there gaps? Are there complementary programs that are not linked? If there are gaps, how are we identifying them if we are not coordinated? The coordination we are talking about is not either or, it is in addition to.”
This kind of back and forth continued throughout the hearing. Sitting in the audience, I was getting as frustrated as I am sure both the witnesses and committee members were. And looking around the room, frustration seemed to be running high in the audience, both for supporters and detractors of SAMHSA.
I do believe Administrator Hyde was trying to address the complexities involved in understanding the role of SAMHSA with other federal agencies, attempting to illustrate how those with serious mental illness dip in and out of the programmatic touch of federally funded efforts across myriad agencies. Unfortunately, to my ears, her tone came across as both arrogant and dismissive, particularly to committee members who were more challenging in their tone, and in two particular cases, downright offensive and rude to her. I do not believe the Administrator came into the hearing with the intent of being off-putting, but she, like some of the committee members, appeared to get caught up in the moment. Regardless, getting involved in a wrestling match was not helping anyone.
The elephant in the room I have no tangible evidence, just a gut level feeling, that SAMHSA leadership may be a bit concerned that agreeing with the recommendations in the GAO report might open the door for increased support for the creation of the additional layer of oversight over SAMHSA called for in the Murphy mental health reform bill.
It is no secret that a core component of Congressman Murphy’s Helping All Families in Mental Health Crisis Act includes the creation of anew HHS assistant secretary for mental health and substance-abuse disorders who, in addition to interagency coordination efforts, would, among other things, supervise the Administrator of SAMHSA.
Let's be clear, I think there are huge challenges with the way the language was written in HR 3717 regarding the creation of an HHS assistant secretary position. Much of what was written looked like tasks that should already be in place as responsibilities of the SAMHSA Administrator. It seems that before adding on an additional layer of bureaucracy, all possibilities should be explored for how coordination and collaboration can be improved within the current structure.
That being said, I think anything remotely resembling a practice that would fit neatly into legislative language calling for an HHS Assistant Secretary (which these recommendations potentially pave the way for), is a frightening prospect for SAMHSA leadership.
I could be completely wrong, but I don’t think so.
In closing, here are a few respectfully submitted recommendations for Administrator Hyde and one big old recommendation for the rest of us:
Recommendations for Administrator Hyde and members of her leadership team Show through action, that the type of leadership and accountability called for in the GAO report can be achieved without adding additional layers of bureaucracy.
Accept the GAO recommendations Administrator Hyde would be better served to accept the GAO recommendations and work toward building trust with Congress by demonstrating the facilitation of cooperation and collaboration on the needs of individuals with severe mental illness across federal agencies.
Facilitate a more constructive dialogue with members of Congress Now is the time for collaborative leadership on the part of Administrator Hyde. I would hope that Administrator Hyde would welcome the opportunity to bring together her peers in leadership across federal agencies to help identify federal efforts to improve services and supports for individuals with severe mental illness. Congress is asking for some specific action steps. Even if you think you are doing them already, doing them better, or find them at face value to not be worth the effort, do them anyway. If you don’t, guess what? We are likely to end up with the type of restructuring described in last years HR 3717. And that, in and of itself, is not the answer to meeting the needs of individuals with serious mental illness across the spectrum of severity.
Facilitate a more comprehensive understanding of the value of SAMHSA programs across the continuum of services and supports for individuals with severe mental illness The widening gulf in public understanding of the interconnectedness between services for individuals with severe mental illness at both ends of the continuum, from most restrictive to least restrictive, is frankly, frightening. Administrator Hyde needs to step up to the plate and aggressively help Congress, and the nation, see how treatment and recovery can have a productive and healthy interrelationship.
One does not need to look any further than the work being done in partnership between SAMHSA and NIMH on the First Episode Psychosis (FEP) 5% setaside initiative for potentially innovative examples. While the FEP initiative is in its early stages of development, the opportunity to show how science and recovery can work side by side is exciting.
A simple recommendation for the rest of us
Be relentless in your efforts to share healthy examples of the interconnectedness between high-intensity services and recovery support for youth with serious emotional disturbance or young adults (and older) with severe mental illness The current tendency to speak in terms of "either-or" when discussing treatment options for individuals with severe mental illness is not healthy for the overall conversation about mental health reform and definitely not healthy for those who are counting on us to help shape the most appropriate array of services and supports for those with serious mental illness, regardless of where they are in their journey to recovery.
Send us your examples of community-based efforts that "connect the dots" between the most intensive services and supports to the most individually directed services and supports. Get busy Network faithful, we got work to do!
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Scott Bryant-Comstock President & CEO Children's Mental Health Network
In the spring of 2003, I sank into a deep depression. I was near the end of my third pregnancy's second trimester, expecting another boy to join my lively 5- and 3-year-old sons. The psychiatrist who treated me thought pregnancy hormones coupled with significant life stressors had caused the sudden, drastic change in my normally sunny mood.
I also developed symptoms of paranoia and psychosis: I was convinced that my baby would be born without a brain, and not even my obstetrician's ultrasonic proof could sway that belief. As I drove my Volvo station wagon on mundane errands -- to kindergarten, preschool, the grocery store -- I believed that spies were following me. To ease my anxiety, I would pull out clumps of hair. I thought constantly about suicide.
It was my second experience with crippling depression. The first time, I was a college senior coping with a failed engagement and my father's cancer diagnosis. I "compensated" by severely restricting my diet and adopting an extreme exercise regimen, pushing myself to the point of exhaustion before my caring roommates called on college counselors to help me. In both cases, with medication and talk therapy, over a period of months, I emerged from that dark place and became "myself" again. And after the second episode, I gave birth to a beautiful, healthy baby boy.
But both times, I felt very alone on my journey from sickness to health. I belonged to a religion that stressed perfection. The few people other than health care professionals who knew about my depression gave me spectacularly bad advice. "Just pray more," one well-meaning friend told me. "God will never give you a trial you can't endure." Another asked me with genuine concern about whether I had committed a serious sin. A third told me to count my blessings -- my husband, my children, my outwardly affluent life in a wealthy suburb. "You have been blessed with so much," she said. "Why can't you just be grateful?"
Today, I am indeed grateful for my personal experiences with mental illness, because they prepared me to appreciate other people's struggles, especially my son's. I never imagined that I would become a caregiver for a child with serious mental illness, and that I would have to do it alone. I don't think any mother holds her newborn child in her arms and expects a serious health challenge. Mental illness is unique in some respects though, because it often takes several years to get a proper diagnosis, the child's behavioral symptoms may include violence, and some parents are unable to find treatments that work for their children. There are few things worse than watching your child suffer and having no way to help.
After the tragic shootings at Sandy Hook Elementary school in December 2012, I shared my struggle with the world, writing in defense of a woman killed by her son, "I am Adam Lanza's mother." Just as I had felt isolated and alone as a patient with depression, I felt alone -- and worse, ashamed -- as a parent of a child with mental illness. I soon learned I was far from alone. Millions of parents across America are fighting the same fight, trying to navigate the baffling systems of healthcare, insurance, education, and too often, juvenile justice, that comprise our fractured mental healthcare system today.
The best part of sharing my story was that my son got help. With a diagnosis of bipolar disorder, we finally had an answer, a roadmap for treatment, and a medication that worked to manage his behavioral symptoms. He was able to return to a mainstream school and has not verbalized any threats of harm to self or others in nearly two years. At 15, he has what we could never have dreamed of when he was 13: hope.
I also connected to a passionate community of mental health advocates -- and inadvertently walked into a minefield. One of my advocate friends has explained the turf wars that characterize this field as follows: "With mental health, everything is personal." I think that statement summarizes the challenges that characterize an advocacy field as fractured in some ways as the system that serves it.
If something is wrong with my heart, I go to the doctor, and she says, "It could be these six things." Then we do tests to determine the cause. But mental illness is more complicated. Every person's experience truly is different, just as every brain is different. The goal is to find what works for you and the problem is that what works for you may not work for anyone else. You may manage your bipolar disorder, depression, ADHD, autism spectrum disorder, or schizophrenia without medication. Others may manage very well on medication. Neither group is "superior" to the other. Both groups are doing what works for them, and that is what matters.
It seems to me that too much of what we "know" about mental illness is actually what we "believe." In one corner, we have NIMH Director Tom Insel's search for biomarkers; in the other, SAMHSA's focus on peer support. Both may well have value, but meanwhile, suicide rates are increasing. These existential differences have a real cost for advocates. While we fight about rights and the right words, we are losing the war on mental illness.
I propose that as mental health advocates, we serve ourselves and those we love best by modeling respect for differences and by highlighting our common ground while also using our differences to create more robust solutions. Task-oriented conflict -- disagreeing about ideas -- has been proven to create better solutions. Person-oriented conflict -- attacking people who disagree with you -- has conversely been proven to destroy organizations. I have to admit that I have occasionally been guilty of the latter, and I am sorry for it.
As advocates, we may respectfully disagree about the causes of and treatments for mental illness. We may disagree about Assisted Outpatient Treatment laws (I support them). We may disagree about peer support or trauma.
But here are a few things I think we can all agree on:
When we talk about stigma, we are really talking about discrimination.People with mental illness face discrimination in education, health care, employment, housing, and the criminal justice system. This must end.
It is wrong to send people with mental illness to prison. The largest mental health treatment facilities in the United States are still prisons. Nearly two-thirds of males and three-fourths of females in the juvenile justice system meet the diagnostic criteria for at least one mental illness.
I encourage all mental health advocates to talk to another advocate who disagrees with you. Find out why that person is so passionate about his or her position. Then find ways to move beyond differences and embrace commonalities. We do not need to speak as one voice. But we do need to create a choir, one that sings a passionate song demanding change from our legislators and from our fellow citizens. Maybe the song we sing is not either/or. Maybe it's both/and.
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Liza Long, aka the Anarchist Soccer Mom, is a writer, educator, mental health advocate, and mother of four children. She loves her Steinway, her kids,and her day job, not necessarily in that order. Her book "The Price of Silence: A Mom's Perspective on Mental Illness" is now available in bookstores.
Last week a friend described a recent visit to her home by an emergency medical team. Her 20-year-old daughter, who lives at home, has a longstanding heart condition. Her treatment wasn’t working; she needed emergency medical help and a decision about inpatient care. Upon the arrival of the emergency team, they consulted with my friend, gathering information about when her daughter had eaten, if she’d taken her medication, what symptoms she’d shown and so on. They considered this good medical practice, and so did she. In fact, so did her daughter, maybe in part because she’d always been told that this was the best way to make sure she got the most effective care.
But that’s not the way it goes in the mental health world.
When another friend, this one with a 19 year old son who has bipolar disorder, called the mobile crisis (mental health) team, her experience was vastly different. They arrived at her house and told her, “We can’t talk to you.“ They refused to hear that her son had discontinued his medications the week before or that he was barely sleeping or even that he was threatening suicide. Instead, they interviewed her son, who argued that he was fine. After they left, her son slammed out of the house and was picked up by the police a few hours later. “Why didn’t you tell them what was going on with me?” he asked his mother. “None of this would have happened.”
There is a federal law in this land called HIPAA or the Health Insurance Portability and Accountability Act of 1996. HIPAA protects the privacy of our health information in all its forms (verbal, written, electronic) and mandates that providers of care, payers of care (insurers) and health care clearinghouses comply with it. HIPAA also gives us all rights – the right to see, access and correct our medical records and to decide to share or not share our health information. Overall, HIPAA is an important law that ensures our privacy. Before it was enacted, some doctors and pharmacies sold patient lists to pharmaceutical companies. In Florida, one disgruntled public health worker sent the names of more than 4,000 people who tested positive for HIV to two newspapers.
But HIPAA seems to play out differently for young people with mental health needs and those with medical conditions. That difference in practice has an enormous impact on families, especially those where young people are living at home.
Today, record numbers of young adults are living at home with their parents. That includes young people with mental health needs like my friend whose son is 19. Data from 2012 shows that more than 32% of young adults 18 to 34 are living at home. A lot has been written about how young people (18 to 29) are generally taking longer to grow up and neuroscience tells us the part of the brain which affects planning and decision-making is not mature until the mid-20s. What’s also important is that young adults have a strong instinct to push against authority and forge their own way. What we end up with is a perfect storm consisting of the need to make good treatment choices, a still developing brain and a desire to push back against anyone telling them what to do.
Now add a discussion of rights into the mix. Once young people become 18 – and sometimes before that – many conversations about mental health care seems to begin with a discussion of their rights. They often hear they have the right to keep information private, refrain from consulting parents or other family members about health decisions and the right to refuse treatment. Unlike my friend’s daughter with a heart condition, they usually don’t hear that involving their parents and others can help get them better care. I used to think the goal was to make good medical and mental health decisions. Sometimes you would think that that was not true; that instead the goal is to make decisions bereft of the input of family and friends.
When my son was 19, he needed an adult primary care physician, a transition many parents dread. The one person who has known your child since infancy is replaced by stranger who you hope will care just as much. I went on the web, found 3 doctors that met his criteria – male and under 40 – and I called each one (with my phone on speakerphone) to see who was comfortable with serious mental illness. We debated and my son chose one and made an appointment. After some discussion we agreed that I would be there to share the family history, then he would finish the appointment. It worked out well. When his mental health problems are acute, my son needs someone to help figure out what might work since his critical thinking skills go out the window. Sure, the line can be a thin one between making the decision for him and laying out the options. But parenting teens and young adults is often about walking a fine line. Parents get pretty good at it.
Last year the U.S. Department of Health and Human Services clarified that HIPAA does not cut off communication between health care providers and the families and friends of patients. In their online guide, it is clear that health care providers do not have to unnecessarily withhold a patient’s health information from their family or others involved in their care. The caveat is that this guideline applies only if the patient (read young person) does not object. When we talk about communication between providers and a young adult’s parents, is our starting point going to be a recital of your right to decide by yourself (or refuse treatment) or is it a discussion of the way to get the best care and support?
Knowing when to stand alone on your own and when to accept help comes with experience. We’ve all let someone else talk us into something we weren’t comfortable with or simply confirm what we already knew. We’ve also had the experience of feeling like you know just the right thing to choose without help. We usually have a default that works for us – some combination of asking others to help us or pulling up the drawbridge until we are ready to listen. For decisions where the stakes are high, such as making a choice about crucial care, most of us consult with those who know us best. HIPAA isn’t supposed to prevent this. Why can’t mental health providers see that?
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Lisa 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, February 19, 2015. Reprinted with permission.