Dearest Teacher,

It is the beginning of the year….at least in the world of school. You have spent your summer away from your classroom but I know from having done this job myself, you couldn’t help sneaking back and working off and on throughout these last wonderful months. You try your best to be ready for the onslaught of students and parents and papers and planning and meetings and crisis and blessed beautiful moments of inspiration, ideas and this wonderful electric thing called “learning”.

As your children walk through your door that very first day of school I ask you to remember that you have our most precious possessions in your hands. Our children leave our homes for your classroom with excitement and anticipation and often a mixture of fear and joyfulness. This fall my first grandchild joined the throngs of children heading to class for the first time. Please be careful with this responsibility.

I trust you to kindle his delight in beginning “school”. His excitement was bubbling over and his smile was bright and shiny as he anticipated that very first day of kindergarten. He believed that school would be a place where he would meet new friends, learn math, learn to read bigger and longer words and have adventures on the playground. Know that you hold the key to his belief in himself as a child who can learn; a child who will discover the mystery of books but also the complexities of social interactions with his classmates, his teachers and the many adults who come in and out of his world. He is only five years old with one foot still in preschool and now a toe in the big “K-12” system. I don’t care that he learns to read this week or that his math skills improve in the next month. I care so very much that the joy and excitement he had the night before that first day of school only grows over the next nine months.

You likely already know these things already but here is what I wish you would do for my precious grandson.

See him every morning when he walks into your classroom with anticipation of a new and exciting day. Tell him something that lets him know that you are so very glad he is in your classroom and part of your learning community. Touch his arm and look into his eyes, “Good morning Thomas! I am so happy to see you today! We have an exciting day ahead and I am so glad you are part of it!”

Remember he is only five. He is new to the world of public education and you are his guide. Be gentle. Employ all your skills to assure that you are using developmentally appropriate practices for early learners. My grandson may have a big vocabulary but he is still a little boy.

Keep it positive. Please have a class management or behavior system in place that is based on gentle supports for good behaviors rather than discipline or punishment. Teach my grandson and his classmates the behaviors they need to be successful in this new world. Give praise and kindness and care while helping them learn to be good friends, students and a member of our bigger community.

Start every day with the belief that you can make a difference in our children’s lives. When you are tired and exhausted and our child pushes your buttons, pulls your strings and causes you to wonder why you are a teacher please take a breath and remember that you are so important to our child. He calls you “Teacher” and, like most five-year olds, thinks that “Teacher” knows everything.  I will help support you and my grandson in every way possible as will his mom and dad and his own little community of people who love him.  Thank you for your work and thank you for showing Thomas you care about him as the little and very special person he is, just like all the other children in all of our schools.

Sincerely yours with great respect,

Thomas's Amma

 

 

Dying of Kidney Disease

This is unbelievable and yet horrifyingly true.  ‘Jenny’ had been fighting her illness for almost half of her young life. Her foe was familiar yet still terrifying with its relentless and changing symptoms that reoccurred despite a long list of medical interventions. She had been through intense treatments with numerous side effects and a lengthy hospitalization when she was 11. Now, at 15, her illness was back with a vengeance. The diagnosis (kidney disease) still puzzled the medical team as they debated what to do next.

At the advice of her doctors, Jenny had recently started a daily outpatient treatment, but her illness continued to escalate and was now life threatening. She was tired of hospitals, tests and medications that didn’t work and seemed to only make her sicker. Nothing could ease her pain. Jenny wanted to give up, she wanted an end to this ‘life’ that was void of most of the things that teenage girls ought to be doing and filled with suffering. Jenny had lost hope.

Jenny’s parents took her to go to the emergency room, hoping that the doctors could convince her to be hospitalized, to get the care, the monitoring, the medications she needed to keep her alive.  In the emergency room, Jenny panicked. The nurse brought in a syringe, and Jenny screamed that she wanted to go home. She refused treatment.

As in many states young people can refuse treatment once they turn 14.  Jenny’s parents couldn’t bear to see their beautiful daughter in so much agony, and they couldn’t bear the thought of losing her. Yet Jenny stood firm in her decision. She was so sick, so exhausted and so weakened by her kidney disease that she wasn’t thinking clearly. Yet her parents had no authority to get Jenny the medical care she so desperately needed. She was slipping away right before their very eyes.

One of the nurses pulled Jenny’s parents aside. There was a way, but it would be difficult. Because Jenny was clearly in danger of dying, her mom and dad could call the police who could take over and legally (and physically) force Jenny into treatment. It sounded horrible, but the alternative was worse. Reluctantly they made the call.

The police arrived, and the process began and became increasingly complicated. The hospital was not equipped to treat Jenny’s condition, so she needed to be transported elsewhere. The caseworker worked to find a hospital that could treat Jenny and that had a bed available. Hour after hour went by while Jenny became more and more agitated, her pain increased and the medications she was given had little effect.

Finally a hospital with an open bed was found. As quickly as Jenny’s parents saw a glimmer of light, their hopes were dashed. The ‘hospital’ was 90 miles away and was a part of the state department of corrections. Jenny’s parents begged for a different placement. They knew that there was an open bed at a different hospital but Jenny could not go there. Now that police were involved, the options were limited to the hospitals that contracted with the county. Jenny’s parents no longer had any authority, not over their daughter, not over her care. They could not take back their decision and they could not take Jenny home. They were powerless.

Jenny sobbed and yelled and cursed. She was terrified, the police were frightening her and she didn’t want to be so far away from her parents, from her home and from everything familiar. One of the policemen barked at Jenny, telling her to quiet down, to stop yelling or he would charge her with disorderly conduct and put her in handcuffs. Jenny’s parents were stunned. How could this be happening? All they wanted was to get medical care for their child and suddenly she was a criminal.

The ambulance arrived to transport Jenny to the ‘hospital’. Jenny begged for her mom to ride with her in the ambulance, to comfort her and hold her hand. But the police didn’t agree. Jenny would be accompanied by one of the police officers, the very people who terrified her. The best that Jenny’s parents could do was to follow the ambulance, fighting to see the taillights and the road through their tears.

At the hospital, Jenny was read her rights . . . “You have the right to remain silent, you have the right to an attorney, anything you say may be used against you . . . “.  Jenny’s parents were in shock. How can this be?? She is ill. She needs treatment. She has kidney disease! Her mom said “Can we speak to the doctor? We need to discuss Jenny’s medications, her care, how do we get her out of here????”  Sorry, the doctor had just left for the night with only the nurse on the unit and “in charge”.  The doctor would call in the morning. 

Heartbroken and angry, Jenny’s parents drove the hour and a half home. They made phone calls to the hospital that was equipped to provide decent care and were told that Jenny was on a waiting list. Perhaps a bed would open in two days. But there were obstacles. Because Jenny was in police custody, the doctor, the social worker and the county caseworker would all need to agree to the transfer. And then, there would have to be a court hearing. Jenny would need to testify on her own behalf. “In person?” asked Jenny’s dad, “Or from the hospital by phone or in writing?” They were told “It depends.”  If Jenny had to appear in person she would be shackled and transported by the police.

How could this happen in 2013, in the United States, to a critically ill child? It does. This story is entirely true except for one detail. “Jenny” is suffering not from kidney disease, but from a mental illness. Is this scenario acceptable for a child with kidney disease? If not, then why should it EVER be acceptable for that same child with mental illness? My heart is breaking.

 

Happy Birthday Mom!

Tomorrow is my Mom’s birthday! I am a lucky, blessed woman to have spent another year talking, laughing, problem-solving, cooking and reading with my mom. I am so thankful that we continue making many more small and large memories together. I am grateful for another year of her teaching me to be brave and compassionate; to be a critical thinker. I am thankful that she has taught me to laugh at the things that might otherwise make me cry. I am glad she continues to try to teach me to take it one day at a time and let go of worrying about tomorrow.

If you don’t already know her, let me introduce you to my mom Lois. She was raised on a wheat and cattle farm in Eastern Washington. The day she was married she had a huge bruise on her thigh, given to her by the hoof of an irritated cow. She helped her dad brand cattle the day before the wedding. Her beautiful dress and gorgeous face hid the fact that she was and is tough to the core. She soon was a young mom to three children, raising us in our early years in the heart of the Columbia Basin in central Washington. She was also an artist and crafted her skills over the years until she was not only taking classes but teaching classes. Creativity runs fast through her veins. Lois is imaginative, original and very creative. Her art comes from somewhere deep within her imagination as depicted on many, many canvases. We children benefitted from her creativity. Our summer vacations were full of planned (on her part) art activities allowing and spawning spontaneity and inventiveness (on our part). My children experienced the same as they spent time with her and my dad on Lake Sacheen, making journals, painting recently caught fish to use for print-making, decorating birdhouses and never missing a television set as they, too, became artists.

Lois’s creativity carries over into her entire world. Her dinner parties are remembered not only for her meal but for the beautifully decorated table. Her sense of style and love of color and originality extends to the gifts she gives, the clothes she wears and the friends with whom she spends time. What else do I love about and learn from my mom? She is a huge reader and our taste in books is similar and our discussions are cherished. She can’t find her way out of a hotel or around a city block any better than I can and I love the times we are lost together. She doesn’t think twice about changing her entire living space and I have inherited the itch to move things around before it gets too stagnant. She loves champagne and beautiful hor d'oeuvres, just not oysters on the half shell. Although an excellent cook, she can easily have pie for dinner and leftovers for breakfast.

Mom chooses not to live in black and white. She chooses color and light and uniqueness. I am grateful to have experienced and hopefully inherited not only her creative genes but also her ability to stand up to adversity. She has had many challenges and somehow keeps putting one foot in front of the other even when it seems to be a relentless uphill climb. I take my biggest problems to my mom. She has an uncanny way of seeing the truth, with a lack of pretentiousness and an ability to cut through the fog, go straight to the heart of the issue and figure out a solution. She also knows when there are no solutions and how to continue moving forward, graciously and with acceptance. She knows how to give a great party and laugh at herself. She knows how to make her family feel loved. I wish her another year of time with family and friends. I wish her new and joyful memories. I wish her colors that come together in her studio a wholly original way, shared with her artist friends and a glass of wine. I wish her some really excellent new books to read. I wish her a much healthier year to come. I love you Mom! HaPpY bIrThDaY to you!

 

Walking Together

I signed up for this walk and I guess I have to participate. It is October and raining…hard. It is dark and grey and miserable along the shores of Lake Washington. Across the lake the Seattle skyline is hidden behind dreary, low clouds that threaten continuous rain. My last NAMI-BC2M walk was far across the country on the east coast. On that walk I joined NAMI Walks NYC, beginning at the Seaport in Brooklyn and from there we walked across the Brooklyn Bridge. It was a sunny and beautiful day with great conversation and high spirits. The previous NAMI walk in Seattle was also a beautiful spring day and we proudly carried the Bring Change 2 Mind banner.

Miserable is the best word I can think of to describe this particular day. It is not “misting” as it can often do in Seattle; it is pouring. The wind is blowing and the rain is sideways. It is cold. I wonder how many people will actually turn out for this 5K slog along the wet and windy shoreline of the lake and walk to Carillon Point. In good weather this is a beautiful walk. Today it is bitter and soggy.  

My daughter Linea, my husband Curt and I make our way past the multitudes of umbrellas to join our team under the Marina Park Pavilion. We put down our umbrellas and shake off some of the water collecting on our pant legs and stomp off the water filling our shoes. We meet old and new friends on our team and slowly make our way back into the downpour to listen to the short welcome speech and begin the walk. It continues to be wretched weather but soon we are laughing about how miserable it is and if we should go the entire way or quit at the halfway point. My friend Victoria points out that this is kind of an analogy for living with mental illness. She is so right.

If I were walking alone I would have given up a short distance into the 5 kilometers. It was too wet even for a person who has good rain gear. I would have waited for the rain to let up or walk this route another day. But together we are a team that urges each other forward. We listen to stories and understand more about why people are walking on this day, in this rain. I talk with a friend who I hadn’t seen since the last walk and we share new resources that we had each found over the last year. Another walker updates me on the health of a family member who is the inspiration for her walking in this downpour. I meet the family of a new and dear friend who had recently lost her son to his mental illness. The family walked with his smiling face on their personalized photo buttons. The little niece and nephew of this man slog along with us, all 5 kilometers and through puddles much larger than they could jump across, yet they never complain. The youngest is soon carried by his dad and his dad never complains. There is much laughter and soon we are at the finish line. Together we have made it.

People living with mental illness need a team. The family needs a team as well. Living with mental illness is not often a sunny walk in the park. It can be miserable, cold and feel like it is a never-ending slog. There were many, many times during Linea’s initial diagnosis with bipolar disorder that I felt I couldn’t go another step. The difficult search to find treatment while her illness was working to take over her body was exhausting and overwhelming. I was disheartened, terrified, and uncertain. I felt very alone. We slowly found our team and we shared our story. Together we moved forward with the support, strength and good humor of family, friends, care-givers and medical providers. There is hope and there is recovery in this journey with mental illness. There is strength in numbers and friends are made when people face adversity together. Join us on our NAMI-BC2M walk May 18^th beginning at Marina Park in Kirkland. Or join a walk near you. It might be a sunny day but no guarantees. If not we will finish our walk together.

A Moment of Peace

Sometimes moments of pure peace overwhelm me and it is impossible not to take notice. Such was the feeling driving the 280 some miles from one side of the state of Washington to the other. We spent the week-end with my parents and were driving across the middle of the state. The weather was perfect and I could see the Cascade Mountains in the far distance. We crossed the great Columbia River and continued our journey from flat plateaus and plains to snow and ice covering the forests of Snoqualmie Pass. I relished the feeling of “all is right with the world”…in that moment. My parents have both had challenging health issues the last few months but at this time they were both doing well. We had a wonderful time visiting, laughing, doing a few chores and sharing a bond that is decades long. We gathered, as we have for many, many years, around the dinner table with my sister and her family, sharing one more meal that my mother had prepared. In addition, my two daughters are both well. Linea is working, playing and planning her upcoming trip to India. Jordan is busy with work, her “almost five-year old” son (my precious grandson!) and preparing for the birth of our first grand-daughter in May. Jordan's husband and Linea’s boyfriend are fine, just fine. Their father and my husband was beside me and I was grateful. In this moment those closest to me were not in a health crisis. They had the ability and opportunity to make decisions about their own lives and were planning for the future. I know how quickly things can change. I hold these moments so dear because I have experienced and remember the fear, pain and sadness that is also a part of life but is often unexpected and overwhelming. I treasure these small pockets of joy and peace and not only savor each one but store them away as precious commodities, to be pulled out and remembered when times aren’t as simple.

Pain, Agony and Renewed Commitment

It was a cold Friday in February, February 2^nd 1996 to be exact. I received a call from the North Central Education Service District in Wenatchee, WA. I was the secondary special education coordinator and a member of the crisis team. A 14-year old student at Frontier Middle School in Moses Lake had shot an algebra teacher and two students and critically injured a fourth. I drove the 68 miles to Moses Lake and spent the next four days listening to the inexplicable pain and anguish of the surviving teachers and students. One week prior I had been conducting a workshop for teachers at Frontier. I knew the principal and I knew his wife. His wife was the teacher killed in her classroom while teaching algebra to a roomful of students. Two students in that classroom died with her. One young woman still lives with the mental and physical pain of that attack. My thoughts are jumbled as I relive sitting with a shop teacher and former Marine who had fought in Viet Nam as he cried that he “should have been able to protect his kids”. I feel deep pain as I remember listening to students tell me that they should have said something earlier. They should have done something. They wanted to know, “Why did this happen?” How many times has this happened since I was in that middle school in the middle of Washington State? Always too, too many.

I really wanted to write an excellent and thoughtful piece but it is so difficult. The horror of the deaths in Sandy Hook Elementary, the collective pain of a nation and world, the onslaught of interviews, articles, op-ed pieces, and opinions and more opinions bombard me with grief. So please excuse the lack of good editing as I instead share some thoughts, perhaps for my own clarity rather than to add any further noise to this national discussion.

I am a “professional”. I teach graduate students who will become special education teachers, behavior specialists, school psychologists, school counselors and often school administrators. I just finished teaching a course on behavior evaluation and support; a course that teaches educators to recognize signs of behavioral disorders and methods to provide positive treatment and support. In addition to my professional training, I have been on a personal journey into the world of mental illness with my daughter, Linea, and I have learned what it is like to be a mom of someone living with bipolar disorder. This deepened my understanding of the gaps and horrific need for services beyond what I learned when I was a teacher of children and adolescents with severe mental health conditions and behavior disorders. It frightens me, it saddens me and it strengthens me.

Every day I am privy to stories of pain and of the lack of resources and services. My work as a volunteer for The Balanced Mind provides me the honored opportunity to hear very personal and heart-breaking cries for help from families all over the nation (and world) who are struggling to find a way to save their child from an illness that may not yet have a diagnosis let alone a treatment plan. As a board member for Bring Change 2 Mind I am privileged to be a part of a team of dedicated people fighting to eliminate the stigma that surrounds mental illnesses and often keeps people from seeking and finding help. In my work as a professor at Seattle University I often work on truly horrendous “cases” that involve children and adolescents that, due to no fault of their own, stymie even the so-called professionals’ efforts to find support and resources. Each day my work and my personal experiences strengthens my commitment to work harder for the best possible care and support for children and their families and to strive for treatment that is not just available to those with knowledge, resources and connections, but to all families.

From these experiences I humbly offer my thoughts:

·         First and most importantly, my deepest condolences to the family and friends of those killed at Sandy Hook Elementary. Also my thoughts are with the first and second responders and anyone near and dear to the families who are suffering through the loss of these beautiful children and dedicated educators. The reverberations of these killings are far and wide. My heart goes out to every responder, educator, medical health care worker, therapist, clergy and community member. The memories of these days will resonate long into their lives. I also send love to all the people, including the young woman injured by Barry Loukitas sixteen years ago, who once again are reminded of the agony they endured. May each person receive continuous, calm and loving support for many, many years to come.

·         My thoughts are also with the Lanza family. Whether it is true or not, headlines today read, “Gunman’s Mother Kept Trials of Home Life Hidden”. I have never known of a parent blamed for their child having leukemia. I have known of many, many parents who are blamed both overtly and covertly for the symptoms of a mental illness exhibited by their child. I have known many parents who will not share their concerns and issues concerning their child’s behavior if it is connected to a mental illness, a disability such as Asperger Syndrome, ADHD, Conduct Disorder or something not yet diagnosed. And, given it is behavior most affected by a mental illness, there is often a sense of blame for the actual illness. My daughter’s early and severe depressions and anxieties (as yet not diagnosed) were extremely worrisome. We did not know there would be an eventual diagnosis of bipolar disorder. Did we do too much? Not enough? Were we too close? Not close enough? There were those who subtly suggested that perhaps we shouldn’t have been so involved; perhaps she needed “tough love”. My daughter has a life-long illness that was critical and from which she almost died, more than once. Had she almost died from leukemia I believe there would have been a different level of support and understanding.

 

·         One of the biggest questions we get from people is what to do for a young adult who is refusing help. That is a question that deserves its own response and is complicated by the system of care currently in place in the U.S. People do not have to accept treatment, even if available, once they are eighteen years of age. Parents, family members and friends often can do nothing as their loved one is destroyed by an illness that can be treated. Mental illnesses cause behavioral changes and a change in “thinking”, which can mean that the person living with a mental illness does not realize help is needed. What to do? Connect with NAMI, The Balanced Mind and read information such as the discussion with Author Pete Earley. Honesty and hard discussions have been the most beneficial for our family.

 

·         Notice every kid every day. Know the symptoms. Here is an article that I wrote with colleagues that address these issues:  Don’t Turn Away: Empowering Teachers to Support Students’Mental Health My biggest wish and something addressed in every class I teach and every time I speak to audiences is that we need to have mental health curriculum in schools. We need to assure that children, adolescents, families and educators recognize symptoms of mental health issues in the same way they recognize physical health symptoms. Sore throat? Temperature? Lack of interest in activities that previously brought joy? Irritability? There is a national anti-bullying campaign and kids at all ages are embracing it. Let’s do the same with mental illnesses.

 

·         Please excuse one last thought in this overly long piece. Let’s all work together to eliminate the stigma, the shame and the disgrace that accompanies mental illnesses. My daughter, Linea, shared her very personal descent into depression and suicidal ideation and her equally terrifying manias in her journals. She shared those journals with the public. I cannot tell you how many times we have heard the words, “You (Linea) do not look like someone who…” and they stop in mid-sentence, embarrassed by where it is going. Does she “look” like someone who almost died by suicide? Someone who was in a psychiatric hospital three times? Someone who is tall, beautiful, articulate and living a stable life in recovery because of amazing doctors, treatment and support from family and friends? Linea did not have to share her illness with the world. Those who live well with mental illness do not have to do so. Often the public persona of mental illness is of those not living well, those living on the streets and those living without treatment. Mental illness and behavioral disorders affect one in four families. Please read and take the pledge to help end stigma at Bring Change 2 Mind.

We have an opportunity to move this national conversation from intense discussions as we try to understand the “why” to working together to identify “what” we will do and “how” we will do this. There is ample research on how to address this national issue. There are dedicated organizations and groups across the country working on this. Speak up and speak out. Offer help, resources and support to anyone (family, friend, co-worker, person living on the street) who is struggling with mental illnesses (and their family). As it is with every change in this country it is a both a bottom-up and top-down effort. Find your place in these efforts and contribute. Do something today to make a difference.

 

It reminds me how thin of a line there is for all of us between stability and devastating illness; between devastating illness and homelessness.

It has been awhile since I have written anything for my own blog but I am inspired today to take time from grading papers and finishing my fall quarter to share something that has touched me deeply and renewed my energy and commitment to fight for treatment, understanding and elimination of stigma surrounding mental illnesses. I volunteer with a group of amazing people for the national organization, The Balanced Mind. Together we respond to cries for help from family members from around the country who are struggling with a new or critical diagnosis of a mental illness in their child or adolescent. One of the volunteers recently lost her father. I took eight minutes and watched the video that Jamey shared on the memorial website for her father. It reminds me once again how mental illness can destroy a person and have sad, painful repurcussions to family and friends that linger for years. It reminds me how thin of a line there is for all of us between stability and devastating illness; between devastating illness and homelessness. 

Jamey writes of her father, "My father was a loving, caring man full of charisma and charm....As a child I remember how supportive he was with anything I wanted to do or try." 

She goes on to write, " No matter how hard he tried he could not get away from the clutches of his illness, which fueled his addiction. Slowly he lost everything, destroying his life in the process. He went from owning a successful construction company with a loving family to be being homeless, jobless, lonely and penniless. He was a shell of the man he once was."

Peace and love to Jamey and her family.

"He was a beloved father, grandfather, husband, brother and uncle" (Jamey).

From Hospitalization to NPR

Yes, I know this blog is waaaay longer than is suggested by the blogging experts. If I blogged more often perhaps it wouldn't be! This was posted on The Balanced Mind Foundation. Check out this wonderful organization!!

It has been an incredible three months. It started in May with the release of Perfect Chaos, the book my daughter and I wrote together. This was followed by book launch events, national interviews, presentations, book readings and signings all across the country. Linea spoke in the opening session of the National Alliance on Mental Illness conference in June and received a standing ovation from over 1,500 people. A week later, she was hospitalized. She spent ten days in the psychiatric unit at a major hospital in Seattle. Shortly after her discharge, we were interviewed for Tell Me More, an NPR program that just aired on August 14th. The host, Jacki Lynden, caused me to reflect on this most recent stage of my life, a life affected by my daughter’s bipolar disorder.

“Were you angry after this last hospitalization?” Jacki asked me during our discussion. "It seems you have the right to be." I hadn’t really thought about anger but I think it was there, buried beneath many different and conflicting emotions. There was sadness, relief, fear, pride, anger, acceptance, hope and many more emotions that I will likely need my therapist to help me define. Yes, I was certainly sad that once again my beautiful daughter was hospitalized with a depression that was quickly escalating into the I-am-not-safe zone. “WHY??? WHY??” was running through my head, and this certainly may have been anger speaking. But I felt immense relief that she was receiving the care and treatment she needed. I also experienced a higher level of acceptance of this nasty illness and a strong belief, colored by past experiences, that her symptoms would be treated.

As well, I felt a huge sense of pride in her ability to care for herself and to ask for help when she needed it. We have been on a journey for more than seven years with a goal of Linea managing her health conditions. She met that goal. Her dad and I were out of the country when she knew she needed help. Linea recognized her symptoms for what they were, she put a support plan in place to ensure she'd be safe, she spoke with her medical team over a weekend when offices were closed, and she, once again, was completely honest with her family. We arrived home on a Sunday and she called to say, "We need a family conference." I went with her to her psychiatrist on Monday and she was hospitalized that afternoon. She even managed to call her medical insurance company just hours before her hospitalization to ask if she needed to do anything more than let them know what was going on.

It was also easier because we had all been through this before. I neither felt anxious when telling our family members and friends, nor did I feel compelled to provide support as they struggled to understand the illness and Linea’s symptoms. The phone calls and conversations took much less energy than during her previous hospitalizations. They moved into support mode quickly and efficiently.

There were still thoughts, deep in the night, about what brought this on and what could have been done to prevent it. Were the activities surrounding the book the cause? Was sharing our story the reason? Should we have not launched this book at this level of energy? Our dear friend Dr. Delaney Ruston (filmmaker, Unlisted: A Story of Schizophrenia) called me from across the country to see how Linea was doing. She said at first she was thinking that perhaps Linea was exhausted from all the book activities and then she said, "One of the main things I got from Perfect Chaos was that this illness is not caused by outside factors. Linea is ill because she has bipolar disorder, not because she didn’t do something good enough or did something wrong."

Managing one’s lifestyle, rest, sleep, stress, diet and exercise is an important part of managing bipolar disorder but it is not an absolute guaranteed cure. Linea is continuously learning to balance the life she wants with a chronic illness. This is a chronic illness that can be well-behaved, providing opportunities for a person to live in recovery. But it can also snap and snarl and need extreme attention until it can be tamed once again. When it causes problems, I do not want to give Linea the message that, somehow, it is her fault. She had been doing everything possible; lots of sleep, tweaking medications, seeing her psychologist weekly and her psychiatrist every two weeks, rigorously doing all the therapy suggested to her and yet, she still became ill again. She has a brain disorder.

Treatment worked once again and she is happy, moving back into work, having fun with friends again and relishing living in recovery. Will it last? How severe might the next episode be? When might it happen? We don’t know. If anything, bipolar disorder has taught us to appreciate every moment of health and happiness in all of our family and friends. Life is short, full of challenges and surprises yet, somehow I think we all live with seeds of hope inside of us somewhere; seeds wanting to fully blossom and allow us to live every minute noticing the good things, the small things, the kind people around us, the millions of moments we shouldn’t take for granted.

Listen to Linea describe where she is today on NPR’s Tell Me More! http://www.npr.org/blogs/health/2012/08/14/158768330/familys-fight-again...

June 29, 2010: What WERE we thinking?

I wrote this almost two years ago, June 29, 2010. I am fascinated reading this now, one week before the release of our book, Perfect Chaos (St. Martin's Press, 2012). It all still holds true!

One day after Linea's graduation we received an offer from a major book publisher for our book. WOW!! We were and still are ecstatic! First came the news from our agent that the editor wanted to talk to us. Two working days later we received an offer from the publisher and after a couple of days of back and forth with our agent we accepted it. We were both completely excited and the whole thing seemed impossibly surreal. The book proposal went into submission the week of June 1st and we received the offer the next week. Our agent told us the speed of this was quite unbelievable particularly in this current market but we attribute it to her ability to push us further and further with a better, more concise and compelling proposal. The excitement continues but the first night (very late into the night, actually) it hit me. This is the real thing. Our book will be published. In stores and on bookshelves across the nation and perhaps beyond. What WERE we thinking? Suddenly I was insecure. The "what if's" flew like bats into my bedroom and into my worrying mind. What if we had bad reviews? What would a negative comment do to my daughter? What if my colleagues thought I was not "academic" enough by sharing a very personal memoir of a devastating illness? I hadn't had such small (what about the cover??) and long-range (what will my grandchildren think about this twenty years from now?) worries since I the births of my two daughters. Around and around my mind went until finally it settled on trust in our work, our agent, our editor and the world at large. We are committed to sharing our story with continued efforts to increasing understanding and support for people with mental illnesses and their families and to reduce the stigma surrounding mental illness that adds another layer of pain to these illnesses. What a journey!

It's All in Your Head!

Are people more willing to pay to avoid physical illness than mental illness? The study might surprise you! I have been so busy with my daughter's and my book, released May 8th (Perfect Chaos - St. Martin's Press, 2012)! I haven't blogged much so thought I would share an article in which I interviewed with the author, Reyanne Weaver. It is a rather long article but I think also very interesting. Take a look at EmpowHer. It's not until the second page that I FINALLY get to give my opinion so if you are interested, keep reading!!

An excerpt, "“Neighbors and friends rally around someone with breast cancer while the doctors determine which treatment option is best based on sophisticated diagnostics,” Johnson said. “I do not believe the same level of support exists for a woman who is hiding in her home battling the overwhelming [effects] of depression.”

Fighting the Good Fight: When Insurance Won't Cover Vital Treatment

Here is a blog I wrote for my good friends at The Balanced Mind. If you haven't visited this wonderful resource, do so! The blog is a long one but it was a long "fight"!

I said that once the fight was over I would write about it. It is not quite finished, but, close enough! I was newly invigorated to write this when NBC Nightly News aired a piece recently on eating disorders and boys. The final comments included what parents should take note of and the caveat, “you may have to fight your insurance for coverage”. Well, yes. And fight we did. Here is the short version of a very long story and a two inch file.

My daughter was diagnosed with an eating disorder, and, after an evaluation, the recommendation was a 30-day partial in-patient treatment program at $1,000.00 per day. You can do the math. Our insurance company approved this treatment plan, but after careful research and discussion with the psychiatrist and psychologist, an out-patient wraparound team approach was developed. This included treatment from her psychiatrist, psychologist, eating disorder (E.D.) specialist and a nutritionist; as well as a significant commitment from family to eat every meal together for at least the first month. Linea met with her psychologist and E.D. specialist once a week. She met with her nutritionist twice a week for the first few weeks and then once a week. The insurance company covered three treatments from the nutritionist and then denied coverage. Why, you ask? It is the policy of the insurance company to cover THREE visits with a nutritionist in a lifetime. Yes, you read this correctly. 

If she had been in the in-patient treatment program, she would have seen the nutritionist once or twice a day for 30 days. The insurance company would have covered that. When asked why they wouldn’t cover the outpatient treatment from a nutritionist they replied, “We don’t have the codes.” Oh my! I was so irritated. After discussion with Linea (and her approval) I submitted an appeal to our insurance company with the following:

1. A table comparing the approved partial in-patient treatment ($30,000) with 30 days of outpatient treatment ($7,000), itemizing the costs of each treatment professional. As well, I compared the cost of 30 days of hospitalization if she did not receive treatment.

2. A letter from her psychiatrist referring to American Psychiatric Association guidelines, which state that eating disorders cannot be treated without a nutritionist.

3. A letter from the past president of the American Eating Disorders Association and her treating E.D. specialist stating the same, as well as the risk of long term treatment without the participation of a nutritionist.

4. A letter from her psychologist stating the same, and her opinion that the outpatient program would be successful, ultimately costing the insurance company less than the partial in-patient 30 day treatment program.

The appeal was denied. Reason (in case I missed it the first time): "The insurance policy provides coverage for only three lifetime visits to a nutritionist". "But", they wrote, I could "go to a second appeal". Okay, yes I will.

The second appeal, which supposedly went to medical personnel this time, rather than clerical, included all of the above and more documentation of the research on eating disorders, as well as letters that spoke of the disparity of services. Second appeal: denied. They wrote that I could talk to my Human Resources office. Okay, yes I will. By then, I was not going to let this go. After 3 months, at $110 per visit, it was adding up. More than that, it was discrimination, and it was offensive. The insurance company was overriding the treatment plan of my daughter’s doctor. Eating disorders are life-threatening. Recovery is possible with research-based treatment.

I approached the director of compensation and benefits in the HR office at my work place. Again, with permission from and discussion with my daughter, I provided him with the packet of information, and I added an additional letter. I compared treatment from a nutritionist for a person diagnosed with an E.D. to providing physical therapy to a person recovering from a stroke. THREE visits per lifetime??? I added, “I am very committed to assuring that people with mental illnesses receive the coverage and care they need as comparable to those with 'physical illnesses', even though we know that mental illnesses are a brain disorder and therefore are 'physical'. Thank you for supporting this and joining me in 'walking the talk' of social justice.”

The response from the HR director was, “My conclusion is that the nutritionist portion of the treatment plan described in (the psychiatrist’s) letter is eligible for coverage under the University’s PPO medical plan. We judge these services to be medically necessary. Our office will instruct (the insurance company) to take necessary steps to reprocess claims submitted by the nutritional therapist, and to prepare the claim system to accept future related claims that are submitted according to the same treatment plan.”

Of course, there was one more roadblock to slow us down. All the invoices had to be resubmitted, and since these were already paid for, I had to send invoices showing this. The reimbursements were processed again, one-by-one and very slowly, with checks sent to the nutritionist, who then had to run these through her business and send me a check. You can see why most people just give up. I would guess that most young people in the midst of an illness like this would not be able to fight this system. Hopefully, there are family and friends that they can ask to help and that can push back at the health care system.

The entire process took over a year to resolve. I am still waiting for the last two reimbursements. I had no idea that my HR director could assist with this. I had no idea how much effort, time and documents it would take. Please share your experiences of seeking and getting the coverage that your child deserves. Help those who can’t figure this out on their own. Together we can make a difference.

Finding Peace

Parents often don’t have time to reflect (or treat) the toll their child's illness is taking on them. Mom and/or dad are too busy trying to manage medical treatment, the emotional impact on siblings and other family members, and one-on-one care for their child. When a child or adolescent has a mental health crisis, it affects the entire family.

As a parent of a child who has been critically ill with a mental health disorder, have you experienced any of these symptoms? Read more at The Balanced Mind.

It Was More Than Teen Angst...

Depression affects students of all academic levels, social positions and economic statuses.
Depression in children and teenagers has devastating impact on the crucial stages of social, emotional and cognitive development, with far-reaching and negative impact on these young lives.

One in five young people have some sort of mental health condition; one in eight has a serious depression.

Despite these daunting statistics, a mere 30% of these students receive any sort of intervention or treatment. The other 70% simply struggle through the pain, doing their best to make it to adulthood. If this were the case with child and adolescent cancer there would be an outcry from the public.

I know these statistics well. I know that educators have a unique opportunity to recognize and support students struggling with depression yet often are either unaware or simply aren’t sure of the severity or need for intervention and therefore do nothing. Parents may well be in the same camp. Is it “teenage angst”? Growing pains? Typical of a child who may be in the middle of a family crisis? A young person having problems with friends, feeling left out or deserted?

My daughter’s depression snuck into her life during her high school years (if not before) and even though I was teaching about depression to graduate level students, I did not recognize it for what it was: severe, life changing, and needing intense treatment. Yes, I knew she was anxious and sad and confused about her friends and their own issues. I knew she worried about where and what life would hold after she graduated from high school.

I was concerned enough to talk her into seeing a psychiatrist and therapist. Both diagnosed her with depression. The very words “clinical depression” startled me. She was still getting high grades in college preparatory course, participating and excelling in piano and voice as a young musician and keeping up with her friends and activities. She spent a few months taking an anti-depressant and then, unbeknownst to me, dumped the remainders down the toilet. We spent hours talking and she cried and she said she felt better and then she worried and then she thanked me for listening to her. We all assumed it was “situational”. Whatever the cause, it was depression.

I have had a unique opportunity to reflect on this as I was working my way through the final edits of the book that I wrote with my daughter, Linea. Her work is “real time” journals written in the midst of her depressions. As I read her words and mine I thought about what I should have done differently and eventually thought about what I did well, from a mother’s perspective, not a professional’s.

There were a couple of things I would have done differently but they are both big ones.
I assumed she knew that if she did not like the first therapist she saw she could go to another one. She didn’t know this. And if she did it would have been very difficult for her to change therapists or doctors without a lot of support from me. She didn’t know she could, she didn’t know how and she didn’t want to hurt anyone’s feelings.

I would have been much more cautious about her depression and encouraged (harassed? forced?) her to continue under a doctor’s treatment for much, much longer. As she says now, “Everyone benefits from a therapist!”

I think I did a couple of things right and Linea certainly contributed and taught me many things during our journey. We had and continue to have a very honest relationship. I know she didn’t tell me everything and it was only after reading her journals that I knew how severely depressed she was but she did talk to me about her worries and fears. I tried to never be judgmental or shocked by anything she told me or anything I read. I always trusted her to do the best she could and I always believed in her fierce desire to be well but I eventually realized that the depression was way beyond what she was able to handle on her own. It just took me too long.

My knowledge and understanding of the research and treatments for depression have shifted due to my personal experiences as a mother as well as a daughter of beautiful and strong women who battle depression. Depression is a brain disorder. Yes, there is situational depression but this, too, can turn into a depression that changes the thinking process, messes with memory, pushes away friends and family, causes physical symptoms and, as my mother says, is “more painful than any physical pain” she has ever experienced. And she has experienced much physical pain in her lifetime. I spent too much time trying to manage and “fix” the environment around Linea rather than helping her find the treatment to fix the illness going on in her brain.

I am thrilled with the Balanced Mind’s new partnership with Erika’s Lighthouse. I am moved and inspired by the voices of the young people featured on the videos. I encourage all of you to share with others and take full advantage of the webinars, resources and materials available about depression. Let’s make sure that our young people who have depression receive treatment and that everyone knows the symptoms and where to seek treatment for depression. Depression is treatable. Untreated depression is deadly.

Posted on The Balanced Mind blog.

Should I have known?

I am immersed in the edits of the book that my daughter Linea and I have written together about our journey through bipolar disorder. As I work back through more than 300 pages of writing, I am struggling with the questions that the editor keeps throwing at me in the margins.

“How did your daughter convince you she didn’t need to see a therapist?”
“How did she talk you out of seeing a psychiatrist for two more months?”
“What were you thinking when she convinced you she was feeling better and that she should go on her planned trip outside the U.S.?”
“How were you so shocked by a potential diagnosis of bipolar disorder when you teach about it?”

I had to give a lot of thought before formulating my response. How had I not known?
When an illness is beginning its invasion, it can enter quietly, mysteriously, or with great fanfare. Reading back through the chronicles of the years leading up to her diagnosis, yes, I can now see it coming during those early years. But at the time, we never suspected a severe mental illness was on its way and that it would try its best to destroy her. I am sure you know exactly what I mean as I struggled with this.

In that time and place, I think we convinced ourselves that it (this depression, soon to be diagnosed as bipolar), was due to stress from school, worries about her future, fears for her struggling friend, all wrapped up in her drive to do and be her best. In looking back, there were indicators of what was to come but at the time these were merely hazy suggestions, whiffs of a more serious illness lurking.

After many discussions of a diagnosis and a major crisis, we met again with Linea’s psychiatrist. Linea sat there without speaking and I finally asked him, “How will we know if it is bipolar disorder?” He said, “We will have to wait and see.” I felt like I couldn’t breathe and my heart hurt as we left his office. Wait for what? It felt frightening and overwhelming and I didn’t know if I could keep from simply lying down on the floor and weeping. But I didn’t, and together we all “waited”. Eventually the pieces came together, the diagnosis aligned with her symptoms, and the treatment began to work. There was hope and recovery and stability.

I share this because I know now that we did the best we could given how this illness unfolded into her life. I also know that we wouldn’t have done anything differently had we known. We were present to her and with her, we listened, we waited and we trusted her to ask for help when she could, and when she couldn’t we made decisions for her. It has been painful, and I would give anything for my daughter not to have this diagnosis, but I also know that it has changed us all in many incredibly positive ways. She is an amazing young woman and every day I am so very grateful for her life. I wish you peace in your own journeys.
(posted on the Child and Adolescent Bipolar Foundation website under Blogs)

If it Doesn't Feel Right

Bipolar disorder takes a family on a roller coaster of brain-driven moods right along with their child. In addition to the depression, the anxiety and mania, there are other symptoms that raise their fearsome heads and go after our children. Parents of children under the age of 18 are responsible to manage the many aspects of this illness and to help their adolescent move into adulthood with the skills to do this on their own or to have a support team in place for times when this is not possible.
I write this post without offering words of wisdom but rather to simply share a recent episode in our own lives with the hope of building community and perhaps offering encouragement to hang in there when times are tough.
My daughter, Linea, had been relatively stable for the last few years but as the leaves began to turn and our part of the world prepared for winter, depression and anxiety crept back and were soon running over her life. An eating disorder emerged and she began to rapidly lose weight.

ED had stalked her in the past, but it hadn’t received the treatment it deserved. At the time we either weren’t aware of the severity or it retreated before causing us to take too much notice. I think in the midst of her other symptoms it was lost amongst the rapid cycling. Now it was front and center.

Something Wrong
It took a few weeks but it suddenly hit me very hard that something was seriously wrong and needed to be addressed. There was a confrontation and discussion and a plan to seek serious treatment for her. Once again I was into something that I “taught” in my graduate classes but I realized I knew little about the research behind the treatment. She had an evaluation at an eating disorder clinic where she was diagnosed with ED. Seeing the words on paper was shocking. Hearing the statistics on outcomes for people with anorexia was terrifying. We were told that the severity of her illness demanded a partial inpatient 30-day treatment program (at the cost of $30,000.00 minimum). We were frightened and believed that these “experts” knew what was best.

But, I couldn’t sleep. Linea was so exhausted from her illness that she no longer wanted or could make decisions. I spent two days calling her treatment team and anyone else I knew in the field of ED.

Researching Treatments
My research on treatment strongly pointed to “individualized plans” that addressed the specific needs of a patient. Linea didn’t just have an ED, she had bipolar and her own unique temperaments and personality that didn’t seem to fit into the treatment program I observed at the eating disorder clinic. Finally we put together a wrap-around program for her that included her psychiatrist and her psychologist, both providers who she had been seeing for five years and who knew her well, and a nutritionist and additional psychologist, both who specialized in eating disorders. Everyone worked together. Communication was a key component. Her plan included not only therapy twice weekly, but documenting everything she ate and being held accountable for “turning the train around”, as her nutritionist described it. It meant eating lunch and dinner with family or friends every single day for at least two months or until her weight was stable again. This was a huge commitment on everyone’s part but once this plan was made I slept through the night. It felt right.

Although Linea is a young adult, living independently and managing her health care, there are times when help is still needed.

Happy Ending?
I was thankful that she was so open with us and asked me to go with her to doctor appointments and to the initial evaluation. The week of hesitancy and unease about the treatment plan was difficult as I tried to support her but still listen to my own feelings or intuition about the plan. It didn’t feel right and I have to say that it took a lot of courage for me to push back against the “experts” at the eating disorder clinic.

Linea has gained the weight back and, although she is still receiving treatment for the ED, she is once again in control of her illness. From her initial grief and anger about it “coming back” she has new skills, confidence and strength in managing her illness. I, too, was hit hard by the reminder that bipolar is life-long but was once again thankful that we have the resources to provide treatment. I am more committed than ever in the fight to assure everyone has such support.

The Insurance Company
Stay tuned for an update…I am still fighting the insurance company about paying the nutritionist. They initially approved the ED treatment program that included a twice daily meeting with a nutritionist but it was “built into the total cost” and didn’t have a “code”. Our plan changed January 1, 2011, to “three visits to a nutritionist in a life-time; exceptions made for diabetics”. Oh yeah?!?! The American Psychiatric Association states that ED can’t be treated without a nutritionist. I have submitted an appeal that includes letters from her psychiatrist and psychologist. I made sure they knew how much less the plan we put together cost in comparison to the partial in-patient program. I also pointed out to them how much less expensive it was than hospitalization. The appeal has now been moved up to the next level. We shall see….

I suppose I can’t resist a bit of advice. You know your child best. You are the expert. If it doesn’t feel right gather all the strength you can find and do some research and speak up. Share your story with others so that together we can make a difference in the system of care for children with mental illness.

Published on the Child and Adolescent Bipolar Foundation's Blog.

There are no guarantees....

Mindfulness is the aware, balanced acceptance of the present experience.
It isn't more complicated than that.
It is opening to or receiving the present moment, pleasant or unpleasant, just as it is,
without either clinging to it or rejecting it.
-Sylvia Boorstein

If one lives long enough, it becomes clear that there are no guarantees in life. There are moments, days and weeks when the lack of control feels overwhelming. This seems particularly true when a loved one is struggling with a chronic illness. I have a mother and a sister struggling with autoimmune diseases. My mother has fought this battle since my earliest memories. I lost a brother to suicide. Every family walks with joy and pain, wonderful bounties and excruciating losses. I often need to remind myself that facing these issues is as emotionally painful for me as anyone else around the world, yet my burden is lessened simply because of the luck of the draw. We are an upper middle class family born in a country with many, many resources. Things could be so much more difficult if we were living in poverty, didn’t have family and friends’ support, couldn’t read or write or speak the community language.

My daughter lives with bipolar disorder. Sometimes she “has” bipolar disorder and sometimes she “struggles with” bipolar disorder and, yes, sometimes she “suffers” from bipolar disorder. Yet it is still a painful struggle, not only for a person facing a chronic illness every single day, but for those who love him or her. I, too, have various relationships with her illness. When things are going well I am particularly aware of our incredible blessings or luck or whatever you want to call it. Yet when my mother falls or my sister struggles with new symptoms I find it difficult to count my blessings while fighting the worries that well up from my heart. When my daughter’s illness takes her into bumps or dips or even on roller-coaster rides I struggle against fear, anger and grief. Yet, I have no control. There is so much that I can do but also so much that I cannot. I cannot fix it or make it go away. I have tried negotiating with my Higher Being when my daughter was the sickest: “Give it to me. Let me have it. My daughter is young and just beginning her life. I can handle it.” But the answer is always, “No, sorry, not possible.”

Finally and ultimately I have no choice but to simply accept it. As a colleague once said about his relationship with his very ill son, “Sometimes all I can do is sit by the swamp with him and just be.” Just be. A concept so very difficult but something that I try to practice every single day. A concept exceedingly tested by the experiences of living with a chronic illness. I also remind myself that there are many positive and wonderful things that have come from this journey. Sometimes these are difficult to remember but so true: honesty, love, deeper friendships and relationship, commitment, strength, humility and patience. There is wonder at the strength of the human spirit of my daughter, my mother and my sister to move forward when faced again and again with incredible pain and worry beyond my own experiences. We are in this together. I will continue to work towards acceptance and embrace the simple joy found in the love of my family. I wish you the same.

From my blog at Child and Adolescent Bipolar Foundation.

Not Just for Kids!

Thought someone might enjoy the blog I wrote that was just posted on the Child and Adolescent Bipolar Foundation website.

Remember, during a crisis act like a thermostat, not like a thermometer. This is one of the many things I try to share with my graduate students during the class I teach on emotional, behavioral and mental health conditions. Many of the graduate students are also parents and have told me that the suggestion of acting like a thermostat rather than a thermometer is also helpful to them in their homes. This analogy means staying level when your child’s emotions are running wild. Instead, we often act like a thermometer, responding to the distress by heightening our own emotions in response.

This response is called “mirroring”. We have a neural “wi-fi” in our brains that is deeply affected by the actions and behaviors of others. Have you ever noticed that when a discussion gets loud or heated you can change the volume of another person by merely lowering your voice and slowing your speech? The frontal lobe of our brain is the “high road”, working with logic and impulse control and it doesn’t fully develop until the MID-TWENTIES!! The “low road” is, in fact, located down low in our brain and it is the “fight, flight or freeze” part of the brain as well as the master of mirroring. When kids are in stress and their behaviors are strong and negative, adults will mirror those behaviors unless the brain is trained to do otherwise.

Example of mirroring:

1. Stressful event occurs (frustration, failure) which activates the child’s (or adolescent’s) irrational beliefs (adults are unfair, nothing good ever happens to me).
2. These negative thoughts trigger the child’s feelings.
3. Feelings rather than rational thinking drive the child’s inappropriate behavior.
4. Inappropriate behavior (yelling, threatening, refusing to speak) provoke adults.
5. Adults don’t only pick up on this behavior but mirror the behaviors (yell back, threaten, etc.).
6. This negative reaction increases the child’s stress, escalating the conflict into a self-defeating power struggle.
7. Although the child may well lose the battle there is no winner. The irrational beliefs the child had in the first place (nothing good ever happens to me) are reinforced and she or he has no motivation to change or alter beliefs or behaviors.
Children and adolescents must be taught to take the high road. Adults must remember to take the high road.
Stay a "thermostat" even though it is hard. Don’t be a "thermometer" and fluctuate with the temperature around you. Try to:

1. Use “I” messages (less threatening, less likely to promote aggression, good modeling of an honest exchange, interrupts power struggles and releases stress in a healthy way).
2. Step out of the conflict if you feel yourself mirroring. Tell the child you do want to talk to them and can when you are both calmer.
3. Encourage the child to take a break and practice self-calming techniques.
4. Listen carefully for what is not being said (decoding) and try to respond to underlying concern with I messages.

I personally know how difficult this can be, particularly when you are exhausted and it doesn’t seem to get any better. Hopefully these suggestions are helpful or a reminder of things you already know. Find time to take care of yourself. Take a walk, join a book club, do yoga, meditate, stay close to friends, find a group or organization that can support your spiritual side, find time to talk to you partner about something other than your child or adolescent, garden or go to a park or conservatory, pet an animal, write in your journal, and enjoy a small pocket of peace wherever you find it. Remember to breathe.
This is the direct link to the CABF Blog.

I Love Second Graders

“Did you know that Ms. Barr is going to CANCEL recess? What if that were true? How would you feel? What emotions would you have?” My graduate student asked this of four second grade students in a special education classroom. They may all have learning disabilities and struggle with reading and writing but there is nothing wrong with their critical thinking skills. They said they would feel emotions like:

Mad.

Sad.

Annoyed.

Happy. “I could stay inside.” (On those rainy days that might be nice!)

Disgraced. “Yes, I would feel disgraced if I had to stay in every single day,” said Bao.

Embarrassed. “Why would you feel embarrassed?” asked the teacher. “I would feel embarrassed because we would be the ONLY school around that didn’t get recess!” answered Lillie.

Cancelled recess wasn’t true of course, but it was a writing prompt to which each child could personally relate. They wrote a letter to Ms. Barr telling her how they felt about it and why they felt that way. The children struggled to sound out the words, working hard to put their own thoughts down on paper and to share how they felt with another person. This is writing!

Such a fun day I had. I love winter quarter when I have practicum students out in schools and I have the opportunity to visit, watch, listen, laugh and learn. One small boy with significant bouncing and rocking issues chanted, “Think. Think. Think. Think,” in time to his movements as he sounded out unknown words. I am going to try this technique next time I have a difficult writing task.

Thank you for sharing your day with me!

It Wasn't on my To-do List

Having spent two weeks at home over the holidays I went back to campus slighty caught up with my list of many things I must, should and could do.  I was in my office early this morning and my phone was ringing as I unlocked my door. It was a graduate student in our program. She said she had listened to me and the other professors in this university with the strong emphasis on social justice; our push to "get involved" and "not lose kids because no one paid attention". She had sent me an email at 4:00 a.m. because she couldn't sleep and wanted to make sure I had read it. She had given a neighbor boy a ride home, along with her son and other students in her local high school. The boy, let's call him Bob, told her he was worried because he was going to turn 18 in "40 days" and would no longer be able to live in his foster home. He had been in 32 homes over his short life and without ever finding a permanent family, services would be over in little over a month. He didn't know what he would do or where he would go. My grad student contacted the high school counselor to see if there was a plan in place to help this young man or if anyone was even aware of his situation. The counselor told her that her graduate program is unrealistic and idealist and in the "real world" schools aren't responsible for this kid's living situation.

I work on a project with Treehouse, an amazing organization that supports foster kids with tutoring, wrap around services and case management. I told her I would call my "contacts" and see what I could find. In Washington Bob's situation is not unusual. Foster home placement ENDS at age 18. Also not unusual is that these kids, most who have not finished high school, drop out of school, live on the streets and many end up incarcerated. But someone stepped up and got involved and pushed me to set aside my "to-do" list and make some calls. Connections were made. Treehouse educational advocates are experts who work with schools, social workers, foster families and students to resolve difficult issues and remove barriers to foster kids’ school success. My student is connecting Bob an educational advocate.

I don't know what will happen next for "Bob" but someone paid attention. Someone couldn't sleep thinking about Bob, an almost 18-year old, who had never had a stable home and would soon not have one at all. She couldn't sleep, unrealistic and idealistic person that she is, so she sent an email at 4:00 a.m. seeking advice. This is the real world and we so need people to make a small difference. Stay tuned.

Grown-up Children

My post for the Child and Adolescent Bipolar Foundation:

My babies have turned into grown-ups. Whether we call them “grown-ups” or “young adults” they are still our children. My mother once told me that as our children get older there may be less day to day problems but the problems that do need our attention are usually big ones. We may not have to deal with the non-stop parenting demanded by a two-year old or the tenuous yet diligent parenting of a thirteen-year old but the problems that are there are likely serious. Things like lost jobs, lost loves and other difficult issues demand our assistance. Parenting a child with a mental illness or any chronic illness adds its own complexities and worries. Our children take their mental illnesses with them as they move into adulthood. This can certainly complicate parenting. I know this intimately. I have been “writing” this piece in my head for the last two weeks which is generally the way I write. I start with a thought and eventually turn it into a paper complete with sentences that I write in my head in the middle of the night, while waiting in line and while on airplanes. Imagine my surprise when the piece I had been working on suddenly showed up on the blog my daughter writes for BringChange2Mind. I read it and decided not to write mine but then I thought again. Perhaps this particular time in our lives would be helpful to others when told from both the young person’s perspective and the mother’s.


My daughter, Linea, has bipolar disorder. She is now twenty-four years old. I have some degree of PTSD from her illness, particularly from almost losing her twice and from her lack of self-care during her sickest times. Her inability to care for herself during those years left a fear deep in my soul, resting yet ready to pounce if I wasn’t vigilant. I have finally learned to trust her ability to care for herself. I have learned to trust that she tells me when she needs me to help her with something. I have learned to trust that she tells me how she is feeling without me quizzing her. Trust has come from long talks, complete, total and sometimes painful honesty, and from time. She has been stable for a few years now and graduated from college last spring. We have sold a book together. We speak nationally. She works on various projects with various organizations in the field of mental health advocacy. She recently accepted a position with a project that was very exciting to her. But I began to see an increase in her anxiety. She seemed unable to ever relax. She didn’t look “okay” to me. She lost weight rapidly. I knew all the symptoms that had plagued her in the past and I was afraid. I gently probed but didn’t get much more from her than she was worried about the most recent project she had agreed to do. I spoke about my fears with her dad and we both agreed that she was moving into a dangerous phase. I talked to her again about her commitments and urged her to take something off her plate. I told her that if she didn’t, I believed she would be hospitalized again. I was honest with her. Within a couple of days it became very clear to me something needed to be done. My heart wouldn’t stop pounding and my worries wouldn’t rest. I knew something was seriously wrong. Her dad and I decided we needed to intervene. It was frightening to me because I didn’t want to make her angry or have her push us away. Yes, I trusted her. Yes, she was a young adult making her own decisions. But we had to do something.


We showed up at her apartment, not to take her out to a meal or go to an event but to have a heart to heart talk. She became very anxious but it worked. She listened. She asked for our help in sorting everything out. I told her she would feel worse before she felt better given she had to do something very, very difficult for her to do. She had to “disappoint” the people who had given her the opportunity to work on a very exciting project. I told her that the ramifications to her health were far worse and I think she believed me. Close to a full blown anxiety attack she made the decision to “quit” her job. We supported her in taking the next steps to resign from this position. It was extremely difficult and emotional for her and therefore for me but I knew without a single doubt that she was on her way to the severe side of her illness if she did not take care of herself.


Do you hope for words of wisdom from a mom who has a twenty-four year old daughter with bipolar? I certainly am not an expert in your own lives and I don’t know all the intricacies of your experiences.I humbly offer this: trust yourself as well as work with your child to trust him or her. It is so easy to second guess what to do, what to say. Listen to what’s going on in your own heart and trust that it is telling you what to do. Thankfully Linea agreed with us but she hadn’t just a few weeks earlier. Sometimes it may mean going back again and again but don’t give up. When someone we love is in the middle of symptoms of this illness, she or he needs the support that a mom, dad or other close support person can give. Build trust and be honest. In the long run it will lay the groundwork for the hard and big problems that will arise.


Now you should read my daughter Linea’s take on this. It has many similarities and some differences. I am so very proud of her!