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).