Monday, December 17, 2012

Pain, Agony and Renewed Commitment

It was a cold Friday in February, February 2nd 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.


Unknown said...

Thank you for writing this, for speaking up about such difficult things with grace and candor. I am 24 and live with Bipolar 1 and have faced those exact same questions you wrote about here. I loved your book and it touched me deeply; it's so good to see someone with so much compassion speaking up about these stigmatized topics. I, too, hope that those suffering are able to find a reprieve in this sometimes devastating and confusing world we live in.

Cinda said...

Thank you Kelcey. Your comments mean so much to both Linea and to me. I hope that your new year is full of joy, health and peace. xoxo!

AnnaPorter said...

I too, so appreciate your thoughtful post, Cinda. But we are one of those families living with a beautiful and damaged young adult son for whom we have found not only no help but much hurt over the years...including not receiving responses from folks at places like NAMI. Which doubles my pain: you are able to write about the amazing help that Linea has received from medical professionals. In our own story we have received no such help. Pain on pain.


Cinda said...

Hi Anna. Thank you for your comment. I am so sorry for the difficulties your son is facing. Could you please send me a private message or email? Thank you!!!!

Jennifer said...

Thank you, Cinda. I agree with all of the points you have made, most especially the ones about how those of us who are living successful lives despite having a mental illness sharing our stories. I feel I am one of those people you describe, and yet, I'm still hiding behind an anonymous blog because of the fear of stigma. I hope some day to be as brave as your beautiful daughter Linea so that I may share my story to inspire others. Loved your book!!

Gregory Montgomery, Jr. said...

Nice post, Cinda. Hope you are well. Say hi to Linea for me.