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.