Saturday, November 20, 2010

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!

Tuesday, November 9, 2010

Help Children and Youth with Bipolar Disorder: Just a Minute

I spent a few days in New York City recently and met some amazing women who have changed the world in small and big ways. I was there to meet with our editor as well as attend some events for mental health advocacy. The evenings were spent talking with women who "get" what it means to have a critically ill child. There was also much laughter amongst many the tears. I am inspired once again to continue working towards better lives for children and adolescents who have mental illnesses and their families who are with them every day. One mom had just put her son in a psychiatric hospital for a suicidal overdose. Another mother's adolescent was on the verge of hospitalization and in that frightening time when the family is responsible for keeping her safe and determining what to do next. Another mother had a small moment of relief because her young child had become stable enough to stay home with only one parent to keep watch, allowing Mom to go to New York. In addition to full time care of their children, their jobs, other family members and much, much more, ALL OF THESE MOMS SUPPORT OTHER FAMILIES! One mother started a national response team for families of children with mental illnesses. One directs a large national program for research and support for young adults and children with mental illness. One manages a large volunteer organization dedicated to providing support and resources. Every woman at this table is directly involved in supporting children with mental illnesses and their families. Every woman has personal experience with these illnesses in their own families. All answer phone calls and emails and cries for help each and every day (and night and late at night). National mental health organizations were started by such women. The work continues every single day. These women are brilliant, capable, loving, dedicated and more often than not, exhausted.

One such organization is the Child and Adolescent Bipolar Foundation. This organization is in the running for $250,000.00 from the Pepsi Refresh Challenge. Scroll down and check out the video (made by a mom with help from her daughter!). Then VOTE for these kids and their moms. The work this organization does changes countless lives, supports thousands of families and continues to push for more research and support for the millions of children with mental illnesses. Voting takes only minutes from your life (and you won't be on anyone's spam list). Mental illnesses takes huge amounts of time away from the lives of these children and their families. Vote if you are a dad, a friend, a co-worker, a young person or anyone else. Vote in solidarity with these brave, resourceful and dedicated woman.

Wednesday, October 27, 2010

What's going on, anyway?

I am teaching my favorite class fall quarter and we are at the point where my students really "get it"! The class is "Teaching Students with Emotional and Behavioral Disorders". My students are all graduate students in special education, school counseling and school psychology. The goal of the course is to develop skills in my students to support K-12 students who have difficulty in school due to behaviors caused by mental illnesses (depression, anxiety, bipolar disorder, schizophrenia, others), conduct or oppositional defiance disorder, attention deficit disorder, and perhaps a general lack of understanding and skills in behaviors that support positive school experiences. Assessment is the first step in this process. What, where, when and how much? The behaviors are not the fault of the child or adolescent. There is a function for the behavior. It is so fun, awesome and inspiring to see my students not only look at the environment and what they can do to support the young person but to learn the skills to advocate for the child/adolescent in their school! Very simply put and without all the research behind the process here is what they are learning:


1. What's the problem? (Child A (let's call her Shonna) puts her head down during the entire class and doesn't talk. Child B (let's call him Matt) disrupts class by talking out and bothering others, "I don't GET IT! I can't DO IT!!")

2. When, where and how often? (Shonna: First two hours of the day. Matt: During math class right before lunch. During social studies at the end of the day.)

3. What is the function of the behavior(s)? What does the student get or get out of with the behavior? (Shonna doesn't have to interact with other students or the teacher. Matt doesn't have to do math or social studies and gets attention from teacher and peers- negative attention but attention never-the-less. Questions to ask: Is the child hungry? Tired? On medications? Does she/he have the skills to do the assigned work? What's going on at home?)

4. How can the environment be changed and/or the consequences of the behavior? (Teacher meets with Shonna individually prior to the class. Make sure that Shonna has had breakfast. Explain the assignments (give specific work prior to group work); give snacks if necessary, put in small, supportive peer group. Check in often with a touch on her shoulder and thumbs up/ thumbs down. Give Shonna "token" to place on desk when she needs teacher assistance. Give positive reinforcement for looking at peers, speaking to group. Check to see if this should be private or public. Some kids don't see public praise as a reinforcer!
Assess Matt to determine his skills in math and social studies. How does Matt do during other periods? If okay then look at environmental factors. Tired? Hungry? Over-stimulated? Medications? Make sure that Matt has an assignment that allows him to be successful. Build assignments to optimal level so Matt is successful but still challenged. Develop a self-monitoring plan for Matt. Have Matt keep track of successful on task behavior and provide appropriate and natural rewards. Even 6 year olds can do this!!)

5. Review data and evaluate effectiveness of interventions. Change as necessary. Communicate with parents and all other teachers involved. Keep working!

Okay, so now you have 4 weeks of a graduate course in one short blog. I love, love LOVE working with "difficult kids" because they are beautiful, challenging and awesome children/adolescents who need someone to step up and support them in their desire to be successful. It is wonderfully rewarding to figure it out with the child and the parents and develop an intervention plan that leads to success! Thoughts?

Thursday, October 21, 2010

The Mom Thing: Dedicated to Roberta, Nanci, Lolli, and all the other MOMS

From my posting on the Child and Adolescent Bipolar Foundation Blog:

The thing about bipolar disorder is that it lifelong. It may finally submit to treatment and be tamed for years. It may stay docile or, more likely, it will come out of hiding and snap or bite at times. It may be dormant but it does not go away. This frightening fact hit me hard as my daughter, Linea, and I were working on our book. She had become extremely ill. She was suicidal. She was hospitalized. She had ECT. She was finally able to go back to school. End of story. Great, happy ending and one that I wanted to believe. I wanted to call it good and end it there. Yet that wasn’t the end and I wasn’t prepared to continue the fight.

We don’t get a guide to parenting when we are handed our newborns, let alone parenting a child with a serious mental illness. Even though I may have been prepared in my professional life, I wasn’t prepared for my own daughter’s plethora of symptoms beyond the initial “stability”. Continued depression, extreme anxiety, mania, cutting, eating disorders, alcohol and drugs. I thought it was over after the first hospitalization. Hadn’t my beautiful daughter been through enough? I struggled to understand how and why “it” couldn’t just be treated and why it wouldn’t lie down nicely for a long, long rest. But, like an autoimmune disease, there are flare-ups as well as times of raging symptoms.

Eventually, like any chronic illnesses we all began to make peace with it. Of course I wish with all my heart and soul that Linea did not have bipolar disorder, but she does. Linea slowly began to understand her illness and her body and began to not only accept it but began to work towards stability. Through hours of talking, listening and reading each other’s words I began to trust Linea. I began to understand how desperately she wanted to live, and not only live, but live well. She began to partner with her doctors and we all slowly accepted this new reality.

As she moved into young adulthood I began to realize and accept something else. I could not and cannot be with her every minute, keep her safe at all times, prevent her from harm or make decisions for her. What I could do was everything in my power to assure an honest and close relationship so that she can tell me what she needs and I can do the same. We can discuss and agree to interventions and treatment if it is needed and if she is unable to make decisions for herself. We can have a support network in place composed of family and friends to catch her if it is ever needed. There are no guarantees….actually, there are few guarantees with much of anything. But there is trust and faith, and we are doing everything possible to assure the best possible outcomes for her.

The older I get the more I realize that I have so much left to learn so I can only offer my thoughts from my own experiences and my work. It has become easier as Linea becomes more confident of her abilities to manage her symptoms. We have all been through a process that has strengthened our commitment to each other as well as to something bigger than ourselves. Yet we know it is not over. But we are in a place of relative peace with this illness. It’s the way it is. It’s “not fair” and I still beg that “it be given to me, not her” but that won’t happen. I can only travel with Linea on the “vast journey” (Linea) of hers, trust her, stay steady and try my hardest not to worry about the future. It doesn’t do much good anyway. Life in the moment is much sweeter.

Saturday, October 9, 2010

France

I am such a copycat. Linea's picture on her blog  made me want to post one of MY trip. She is way more creative and ingenius than I am and I readily admit it. But none-the-less...here is a picture taken from the boat on the Canal du Midi somewhere around Carcassonne. I want to remember the joy of those carefree weeks less than a month ago! It was mostly sunny but the days of a little rain and clouds were so beautiful. Monet?

Tuesday, October 5, 2010

Mental Health Awareness Week: Can I Use the Word BREAST?

Mental Health Awareness week is October 3 - 9. Have you noticed that there are many, many people wearing pink in October for Breast Cancer Awareness month? Pink stays with us most of the year in one way or another because of the inspired breast cancer campaign. The breast cancer campaign has successfully led the way for many other campaigns including heart, diabetes, prostate cancer and others. Decreases in deaths from breast cancer are partially attributed to the result of treatment advances, earlier detection through screening, and increased awareness, certainly with great contributions from the campaign. There are campaigns designed to do the same for mental illnesses. What are the similarities between the two?

First, let's make it okay to talk about mental illness. It is not an illness to be whispered about nor hidden between the generations and family members. Just like the word "breast" was once taboo in most environments, mental illness still has the power to make many people look away, turn away or at least feel very uncomfortable.

Early screening and knowing what to look for is the second critical aspect of these two campaigns. Just as we teach women to be aware of their own bodies and health, we need to teach all people to be aware of mental health conditions. And, we need to start very early. Parents and teachers should be knowledgeable partners in screening for emerging mental health issues and know exactly what to do and who to talk with if something is amiss. Our children should be taught about mental health just as we teach them about nutrition, general health and sex education.

Thirdly, just as with the breast cancer campaign, we should be talking about and teaching prevention. As with cancer, mental illness is not the "fault" of the person but there are things that build resiliency and help to prevent worsening of symptoms. These are quite similar to any prevention program: eat healthy meals, get the right amount of rest, exercise, have meaningful work or avocation activities, develop and maintain good friends, have a positive social life, and find some purpose either from faith or spirituality or commitment to something beyond one's self.

Finally, find the best treatment possible. Unfortunately this may be the most difficult to achieve. With treatment and support, mental illness is not the "sentence" it has been in the past. Recovery and stability is possible. The days when someone faced certain death from a diagnosis of breast cancer is no longer the case. The same is true with mental illnesses. We face huge challenges across the nation to assure treatment is provided for everyone with a mental illness. In Washington State the growing deficit has negatively impacted the most vulnerable. DSHS is slashing away at services for the mentally ill. What would you do if your mother was turned away from treatment programs if she had breast cancer?

We have a long way to go in treatment for the mentally ill, particularly those without strong family or advocate support. This fourth step is paramount to recovery. Mental illness affects the entire family and I know how priviledged my family is with the care that my daughter receives. Let us all turn to our family, neighbors, fellow employees and community and assure that mental health awareness and treatment is as readily available as a mammogram. To learn more check out NAMI's site. 

Tuesday, September 7, 2010

Hope for a Balanced Life

My daughter Linea and I have had many opportunities to meet some very amazing people all over the country. Whether they are famous or not so famous, wealthy or not so wealthy, brilliant or merely super-smart, they are all connected by the strong desire, commitment and action to bring positive change to the lives of people affected by mental illness. A few days ago we had a conference call with Emily Smith of the Karla Smith Foundation. We spent time with the Smith family in St. Louis for the Change a Mind, Change a Life event. We left with new best friends, bigger hearts and more drive than ever to change perceptions of mental illness, assure treatment and understanding and support research.


Emily said something to us at the end of our call that touched me deeply. She told us how much she appreciated what we are doing and what Linea’s sharing of her personal story has meant to her. She also said, “I know it isn’t always easy. I know this illness just doesn’t go away. I know there are times that are hard.” I held back the tears. Emily knows. She knows that it is a lifelong illness and that, although treatable, it is not “always easy”. The Smith family lost their beautiful daughter, sister and best friend. They lost Karla to bipolar disorder. She was diagnosed at the same age as Linea. She lost her battle. The Smith family has dedicated themselves to the support and care of families who have experienced the death of someone they love by suicide. I will not turn away from this family and I will not push away the thoughts of how close their story came to being ours. Suicide walks with those of us in the world of mental illnesses and we cannot look away. Tom, Fran, Kevin and Emily Smith are making a difference. The pain and tragedy of Karla’s death is always with them. I know from personal experience the pain of losing a family member to suicide. The grief lessens but it never leaves. But there is healing and beauty and power in knowing that their work is having positive impact on the world. As written on the Karla Smith Foundation website, “KSF believes there is hope for a balanced life. Even if there is an untreated person with mental illness in the family, even in the aftermath of suicide, there is hope. KSF helps discover and nurture that hope.” Our family joins the Smith family in this mission of hope. Thank you, Karla Smith Foundation. Take a look at their wonderful work at http://www.karlasmithfoundation.org/index.php

Monday, August 23, 2010

Consumer or Hero?

I just returned from the Washington State NAMI (National Alliance on Mental Illness) conference where my youngest daughter and I were honored to present to a wonderful audience of people from all over the state. Our topic was entitled, "From Trauma to Empowerment". Our audience included professionals in mental health care, family members and "consumers". Isn't that a strange word for someone who is living with a mental health condition? A consumer is someone who uses services or buys products.  So, yes, many of the people at the NAMI conference are indeed consumers. They see psychiatrists, psychologists, medical doctors, therapists, vocational rehabilitation specialists, clinicians, dietitians, etc. etc. and more etc. They purchase medications, therapy, yoga, exercise sessions and much more. But in addition to "consumer"

I would call every person with a mental health condition a hero. Personally I have witnessed most of what my daughter has gone through with her diagnosis and treatment of bipolar disorder. As her mom, I, too, have been "brave" but nothing close to what is called for from those in the trenches of mental illnesses. I spoke with so many people at the conference for whom each and every day takes the utmost strength and courage to move through it and forward to the hope and possibility of recovery. These heroes include the R.N. who has struggled for the last three years to treat a severe and debilitating depression yet managed to get herself across the state to attend this important conference. It includes the man who has moved into stability, helping others with their own illnesses. He achieved stability, finally, after years of attacks from schizophrenia, forcing him into the fog of a broken mind and without the ability to live the life he has today. The heroes include the people who were not there, but represented by loving family members. These people struggle through each day in a treatment facility, very aware of the pain and anguish of illnesses that knock one off center and force a tenacity of spirit that most of us have never known.

When an illness strikes the body we muster our forces to manage it. We read and study and ask questions and find support groups. When mental illness strikes, the attack on the brain may not allow for the person to put together a "wellness plan". It may only be possible to make it through one day at a time. Bravery. Courage. And, once a person is approaching some stability, they must continue with this amazing strength to continue treatment, stay steady and fight each day to be well. Most of the people at the NAMI conference are not only in this fight for themselves but for others. Each day they live as heroes, in their own lives and for other individuals and society as a whole. If you aren't aware of the work that NAMI does consider joining, volunteering and/or donating. I cannot cheer loudly enough for the heroes in this battle!

Wednesday, August 18, 2010

A Conversation with Cinda and Linea, Brought to You by CABF

Linea and I were honored to participate in one of the podcasts on Flipswitch. Flipswitch is for teens and young adults and addresses living well with mood disorders. It is one of the many resources offered by our friends, the Child and Adolescent Bipolar Foundation (CABF). You can check it out at the "Interview with Linea and Cinda".

Each week, the Flipswitch crew takes on a 'piece' of the mood disorder 'puzzle'. Researchers, celebrities, artists, moms, and teens share their perspectives in the interview portion of the show. Click here to subscibe to the podcast. I hope you enjoy this!

Tuesday, July 27, 2010

Tell me why? "...disarming all hostility"

Linea and I are reading our book again, preparing to work with our editor in September. As I read I often need to stop and walk around for a bit, drying my eyes, and centering myself back into this safe place in which I currently reside. Reading it pulls me back into all the fear and uncertainty yet I know there is a hopeful ending. I read a few passages that remind me again why we chose to share our most private lives, agonies and all. The following excerpt was written during Linea's first hospitalization. We are in the psychiatric ER in the largest trauma hospital in Seattle:

"We are finally called into the lock down unit of the psychiatric ER to stay with her. There is no information from anyone. There are no windows. The doors are locked. The nurses are harried. The three of us sit in a tiny room with a gurney and one chair. We don’t know what to expect or what we should expect so we wait. A nurse comes in briefly and answers our questions by telling us she has no information.

As we wait in the ER we listen to the nurses as they determine that two of the patients will need to spend the night on gurneys in the hallway because there are no mental health beds available in the city or anywhere nearby. These patients are homeless and there is no place for them to go. They have no mother or father or aunt or son or friend with them to campaign for their treatment or figure out the “ropes”. Alone, they face a dense maze of very dangerous ropes.

Even as sick as Linea is, she is aware of the inequity of the mental health system and her own strong sense of humanity pushes through her illness. Linea questions why she, an upper middle-class white girl with no obvious problems in comparison to these patients, should be the lucky one and get a bed. She questions whether she should have told her doctor how sick she was.

“I shouldn’t get the bed. Tell them that I can stay in the ER tonight. Let someone else have my bed. I can go home with you,” she cries. She becomes more upset as decisions are made on who will stay and who will go.

As we wait, we listen to a man at the end of the hallway sob and cry and weep off and on for hours until his sedation kicks in and finally all is eerily quiet from his room. At this point in our journey I am not yet used to grown men crying like children who are hurt and want their parents, believing their pain will never stop. It is only the beginning of my education in this kind of pain."

Linea was in the psychiatric unit of the hospital for much longer than a "night or two" as we initially had hoped. Over the next month she became an intimate member of a group of people whom most turn away from on the streets and elsewhere. I, too, begin to know these patients as people. People who deserve much more than they receive. People who deserve care and understanding, support and....love.

Would someone suffering from a heart attack in the U.S. not be able to find a bed or treatment? Would a mother be too embarrassed to bring her daughter clean clothes if she were in the hospital for a kidney stone rather than a depression?

If we could read the secret history of our enemies, we should find in each man's life sorrow and suffering enough to disarm all hostility (Henry Wadsworth Longfellow)

Tuesday, July 20, 2010

Happy Summer!

It is summer and I don't want to miss a single sunny day, warm night under the stars, fresh raspberries and peaches, salmon on the grill, or chocolate ice cream. I am still reeling (can you BELIEVE it!!??) when I remember that we just sold a book to a national publisher. I have finished summer quarter and am now writing grants and preparing for presentations this summer and early fall. But this darling boy reminds me to live in the moment. I don't want these precious warm months to slip away. It is time to replenish. Soon enough it will be rainy and dark at 6:00. Fall quarter will begin, students will return, and editing of the book will be on-going. Find a moment to enjoy these beloved summer months. Look into these eyes. Is this not the secret to happiness?

Tuesday, June 29, 2010

What WERE we thinking?

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!

Wednesday, June 9, 2010

Dearest Daughter, A Love Letter on Your Graduation

As we approach your graduation week-end I think about all the love letters we have written each other over the years. You have written me letters from joy and pain, excitement and anguish. I have written you love letters during both the happiest and the darkest times.  How proud we were when you graduated from high school and soon left Seattle for Chicago, a scholarship in hand and a goal to complete a degree in music performance! Yes, there was fear and long, anxious talks with plenty of tears while you struggled to decide where to continue your musical studies. Depression crept around the edges of your life and sometimes moved in to flatten you but mostly you held it at bay. Once you decided on Chicago there was no stopping you. Your dad and I were astounded at your success your first year in your program. I had many opportunities to watch you perform and navigate your college, the city and your life. I felt so much pride in your independence!

The second year of college your life and ours was torn apart by an insidious and unexpected disease. It was not in "the plan", was it? After the pain of almost losing you, the fear of "what's next?" and the gradual acceptance and partnership with this new way of life, you have moved forward, taking us with you. Life changed for you and for us as you eventually changed majors and universities and continued to pile up classes in the arts, philosophy, literature, poetry, and wrote and wrote and wrote some more. Can you believe that throughout all of this we wrote a book together? You opened your heart and soul to me and soon, to the world. I learned so much writing with you. You have taught me to push outside of my comfort zone, to question my thinking, and to trust your brilliance, maturity, and wisdom.

But here is the point of my love letter. Yes, plan for your future but don't miss a single moment of today. You are truly special. You are unleashing your power on the world. Relish each moment. You are surrounded by love. Not only Mama and Popi but your fierce-loving sister and little Thomas, who's worship-love for you will only grow over the years. The two grown boys have your back and would do anything for you. We will never leave you. Yes, you are surrounded by love. You have done more in your life already than most people your age and there is so much more to come. Oh, my youngest baby, I have told you this so many times and if I could give you any gift it would be: Trust the Universe. There is a plan for you and you need do nothing but stay authentic, honest, brave and open. Love, the Mama
    Relish each and every moment in time.....

Sunday, May 30, 2010

Empowerment!

Self-determination is incredibly important for the success of children and adolescents with or without disabilities as they move into adult life. I like this defination, "the ability to identify and achieve goals based on a foundation of knowing and valuing oneself" (Field & Hoffman). I teach my graduate students the importance of self-determination but these last few months I have been thinking about the next step beyond self-determination: empowerment and advocacy skills. These skills can be used to change inequalities, stigma and misconceptions about disabilities but also can be extremely positive for the individual. I have watched this occur over the last four years with my daughter Linea. From my perspective, the first part of her journey was to accept and acknowlege her diagnosis of bipolar disorder with a few steps forward and some backwards as she learned to manage a chronic illness. She has written about this journey in her blog. Eventually and sometimes simultaneously, she began to know and value herself in this new reality. She moved toward identifying and achieving her goals which included a strong commitment toward social justice. The memories of the inequalities we witnessed in the mental health system strongly influenced her. It has been amazing to watch her find her voice and to use her power. As she joins a large and national movement to eliminate the stigma of mental illness and assure understanding, support and resources for others she has become confident and powerful yet has maintained her humility and kindness. (Check out her post as a writer on the BringChange2Mind blog.)

The National Empowerment Center actually conducted research on the definition of empowerment in the mental health world. It includes 15 qualities of empowerment. An example of just 5 of the 15 include: 1. decision making power, 2. access to information, 3. feeling part of a group, 4. changing others' perceptions of one's competency and capacity to act, and 5. change that is never ending and self-initiated. Linea demonstrates all 15 of the qualities defined in this research. I am not sure how she moved from the initial diagnosis to empowerment. It is certainly a developmental process and support, resources, opportunities and her own temperaments and brillliance likely figure into this. Although not everyone has these opportunities I do believe we should ensure that all of our young people (and others) have the opportunity to be not only self-determined but empowered within their own lives and in their communities. This occurs through small, individual changes with a big impact on the world at large!

Sunday, May 16, 2010

To Emily

Sunday was the National Alliance on Mental Illness (NAMI)/BringChange2Mind (BC2M) walk to reduce the stigma of mental illness and raise funds for research and support for people with mental health conditions. This walk was particlarly poignant for many reasons and one was because of Emily. Exactly four years ago on May 15th, daughter Linea was released from the psychiatric unit at Harborview Hospital. She had been there for a month and for part of that time she was on a 24-hour watch, a suicide watch. Someone was watching her every move, night and day, minute by minute. The hospital assistants (lovingly referred to as the H.A.s) perched beside her bed, by the bathroom door and anywhere else close at hand in the locked-down psych unit. It was often painful for us to talk with our daughter and often emotional conversations. Adding to the discomfort was a stranger two feet away, pretending to read, but whether they wanted to or not, intimately involved in our painful lives. Emily was one of Linea's H.A.s. She was not much older than Linea and attending a nursing program while working at the hospital. She treated Linea with care and respect and she made us feel "normal" in a very frightening world. (Wow, tears are falling on my keyboard thinking about this...Emily, you were our anchor and didn't even know it.) She not only gave our family the message that this was not the worst thing in the world but that there was hope and treatment and recovery. Emily was young and certainly could relate to a young woman who's life had fallen apart yet she didn't flinch. After Linea was released, still reeling from her treatment and into a very shaky recovery, many of her friends deserted her. Not because they didn't care but because they didn't know what to do. About a month after she was home from the hospital, Emily invited her to a dance. Linea went and, once again, felt "normal". They hadn't seen each more than a couple of times over the last four years but connected through Linea's advocacy and the NAMI/BC2M walk. Four years later....Emily walked with us on Saturday and life once again comes full circle! Linea was the team captain, leading us to raise more than $5,500.00. Emily is now married to a wonderful man and has a darling baby girl soon to be one year old. She finished her nursing program and continues to touch peoples' lives in ways that she will never completely know. Linea, her dad, her sister Jordan and I were so touched to have her walk with us. I would never have imagined this four years ago. Treatment, recovery, stability, advocacy, voice, power, family and love. Emily was part of Linea's treatment, not just by keeping her from harming herself but by believing in her and us. Thank you, Emily! You are loved!

Stay tuned for more from the WALK!

Monday, April 26, 2010

Treatment: All in the Family

Linea and I have been writing and speaking about treatment of mental health conditions during the month of April. Treatment includes many things - medications, counseling, life skills and life style, and family counseling and support. The importance of family support is critical. Please note that the definition of family may vastly differ from person to person and if there is not a biological family that can offer support I believe it is important that this is found somewhere else, perhaps through support groups, friends or peers. There is ample research out there that family support is a critical factor in the positive outcomes of people with mental illnesses. One of the most valuable pieces of advice I received during the time that Linea was the sickest was from a colleague and mental health professor at my university. He asked if we were in "family counseling" and if not, he suggested we should be. He said, "This time and what you do with it provides an opportunity for a stronger, more honest and loving family than you have ever had previously." He was right. What we learned from all of this is to do more of what we have always done. Honesty, laughter and love.

I have the two most wonderful daughters in the entire world. I know that most moms feel this way. When my first baby girl, Jordan, was born I was overwhelmed with the joy and love and tenderness that engulfed me. Linea, our second daughter, brought with her the same feelings. With a new baby one begins to know the deep, dark, hidden and sometimes not-so-hidden fear that something could go wrong, something could harm this small and precious soul entrusted to our care. Things do happen and my family continues to thrive and grow closer throughout the ups and downs of life. (picture: Mama, Jordan and Linea having fun "dressing up" for a family dinner)

One of the most terrifying times was when Linea first crashed into bipolar disorder. Hospitalizations, suicidal depressions, manias with overdoses, and more symptoms than I could have possibly imagined happening to my daughter happened. Yet we are all closer and more honest with each than before. There were times when Linea's dad and I were completely responsible for her life. We managed the hospitalizations, the medical insurance, the transition from hospital to home, the doctor appointments, the medications, the hours and hours of agony as she tried her hardest to get stable. Of course she did the hard work and she experienced the pain but we as a family shared it with her every step of the way as much as we possibly could. At one point I said to her, "You don't have to fight this anymore. Let me." She was too exhausted to keep herself safe. Slowly as she became stable we pulled back. She told me, "Mom, you do such a good job of taking care of me I am not sure I can do it myself." I knew that my job was now to help her become secure and independent in her ability to care for herself. We had long and honest discussions about this. We have a relationship built on previous years of honesty, laughter and love where I can ask her anything and she can tell me everything... or not. We trust each other. She can ask for my help when she needs it without feeling as if she were giving up control of her life again. I can ask her questions that may be from old worries yet she will talk with me about my fears. She is brave and she is honest. While I was giving her everything I could I was also seeing my own therapist. I needed a safe place to scream and cry and say, "It's not fair." I needed to be able to deal with my own PTSD of almost losing my daughter. I needed to remember the laughter and the quirkiness and the strength of our family. I needed to practice breathing.
 
Writing together, speaking and traveling together has only strengthened our trust, love and laughter. Our family has what some might define a unique sense of humor. Some of the experiences we have had with this illness definately makes us laugh. In general, life is funny, don't you think? There were many times and still are that a good laugh refreshes us, saves us and reminds us that we are just silly human beings trying our hardest to do our best and sometimes failing spectacularly. As one of the men in the psychiatric unit at the hospital said to Linea as she was preparing to leave, "Listen to the voices out there. They will help you." Hopefully those voices are family, whatever the definition, and family that loves you more than anything else in the world. (Picture: Mama reading to Linea)
                                                                                                                                                           
Suggestions to parents and others: If you haven't already done so, talk to your children about mental health. This should happen just like we teach our children about physical health and harder topics like sexuality. Open the door to the opportunity for them to tell you about their own thoughts, concerns and fears. If you need a support group check ot BringChange2Mind, the Child and Adolescent Bipolar Foundation, NAMI and SAMHSA.                                                                                                                                                                                                                          

Monday, April 19, 2010

I know nothing

I write this post with humility and trepidation. Daughter, Linea, and I were invited to speak at the Empowerment Conference for Native Americans with Disabilities in Polson, Montana. We flew into Missoula, MT, and drove north to Polson. Montana, home of the Big Sky, is amazingly beautiful and every time I visit I feel so very small in a very large world. More so this time. We drove north, entering the Flathead Indian Reservation and finally up a hill to a breathtaking view of Flathead Lake before descending to Polson. The conference is a yearly occurrence attracting people from the Blackfeet, Mandan, Northern Cheyenne, Crow, Salish, Kootenai, Assiniboine, Sioux, Gros Ventre, Pend d’Oreille, Chippewa Cree, and Little Shell Tribes as well as many others.We spoke about stigma and mental health, treatment and resources but I knew nothing. It has always been obvious to both Linea and I that we are very blessed with resources and support in her journey with bipolar disorder. I also know that not everyone is willing or prepared to share their personal story with mental illness. We feel a responsibility to share ours since we have the opportunity and resources to do so and we offer this with the intent to increase understanding and support. I felt incredibly inadequate and humbled presenting to the Native American people at this conference. I know that diagnosis and treatment has been the key to Linea’s wellness but what does that look like for people living on a reservation? I do know that resources are slim. I do know that people told us of long waits to see a psychiatrist and of limited treatment and resources. I heard from men and women that sharing a story of mental illness beyond the family was not appropriate for many yet I also heard that doing so would help to increase support. One woman told me, “I should share my story but I can’t.” She thanked me for sharing ours.

I still know so little. I was humbled and honored to have been asked to present at this conference but I haven’t walked with the good people in our audience. I only heard tiny pieces of their own heartaches. I know that within our deepest “oneness” we are all on this path together as human beings but I knew nothing of their personal stories with mental illness. 

The conference began with Tommy Stiffarm of the Sacred Web Recovery Coalition /Wounded Warriors Project and from the Little Shell Tribe tribe opening with a blessing ceremony for the speakers. Again I was humbled by the opportunity to share this sacred ceremony. He asked Grandfather to bless him, a “pitiful man", and Linea and I and the other speakers, as we traveled together through the conference. I stood with palms up to receive this blessing, simply asking to understand a small piece more of this work. Help me, a pitiful woman, I know nothing. Teach me.

Sunday, April 4, 2010

Necessary Treatment


What happened to the last month plus a week? I have been teaching, meeting, writing (not blogs, obviously) and traveling. With no room for the unexpected, of course the unexpected threw me a curve ball and I am somewhat behind. The good news is that an article was accepted in The Clearing House Journal, entitled "Don't Turn Away: Empowering Teachers to Support Students' Mental Health", written by me, daughter Linea and two colleagues from Seattle University. Excellent! It was great to write something with a "voice" as well as research and suggestions! I will post notice when it is published!

Treatment.....this is the topic of the month. Treatment for mental illness but perhaps this relates to other medical treatments as well. Prior to treatment one needs a diagnosis. Often a scary, mind-boggling, unbelievable diagnosis precedes treatment. Whereas diagnoses is often "wait and see", treatment can be "trial and error". When my daughter Linea was in the initial stages of the diagnosis of bipolar disorder, depression was the major symptom. Many, MANY, trials of anti-depressants followed. These all seemed to have side effects that would cause most people to just stop taking the drugs. Eventually one medication put her into a manic state. But she struggled on, trusting her doctor, talking to us and her therapist and psychiatrist. Except when she didn't. Sometimes she said to-hell-with-this, why not self-medicate? There were times I didn't know what to do or where to turn but as my mom would say, "Hang on for a minute, an hour and then a day." So we all did.

Eventually there was a close-to-correct concoction of meds in place and enough stability followed that she was able to add all the other important aspects of treatment. Like: Taking care of yourself. Caring for yourself. Eating, sleeping, exercising, counseling, finding joy, peace and laughter. Prior to stability this was nearly impossible. My job as a parent was to stay steady. As frightened as I was throughout the process of finding treatment to ensure stability I needed to stay calm and pick up as many pieces as I could so that she could put her energy towards getting well. It was very difficult at times. Extremely difficult many times. I spent hours at psychiatrist appointments, driving her to therapist appointments, calling, cajoling and arguing with the medical insurance company, filling out paperwork, reading and researching medications (not always a good idea), talking to people and listening, really listening, to her.

As the parent of a young adult one must walk the fine, thin line of doing too much and not doing enough. I can only describe it as helping her to learn to walk a tight rope. At first I needed to hold her up until I was so exhausted I honestly didn't know if I could do it anymore. Eventually she found her balance and took a few steps. I often couldn't trust that she could really do this on her own so sometimes I held on so tightly that she wondered if she would ever be able to traverse on her own. She pushed me away, and althought sometimes she faltered she began to become steady. The best thing we did was talk and talk with the deepest honesty possible. Eventually I learned to trust her. She is stable, and only occasionally wobbly. She is now in charge. She can ask for a small touch to steady her when she needs it and she is soon on her way again. I am incredibly proud that she has found her balance. I know that it is her own hard work and her incredible intelligence and deep commitment to life that keeps her on this path. I also know that it is not only me but her dad and sister and brother-in-law and boyfriend and grandparents and aunts and uncles and friends who surrounded her with a safety net of love and support that helped her find her stability.

Check our video where we discuss treatment. http://www.youtube.com/user/LineaCinda#p/a/u/0/q83ZxRvFw9s

The Tightrope Walker, a painting by Jean-Louis Forain.

Wednesday, March 17, 2010

Where's Mom? Dad? Anyone?


Diagnoses of mental health conditions are the topic of the month. Linea is writing about her own diagnosis and provided many resources on her blog for others who may be facing a new diagnosis. As Linea's momma I have traveled this road with her as have the rest of her family. Families are intricately involved in the diagnosis (and subsequent treatment) of a mental illness or any other serious or long-term illness and so important to stability.

I am very involved in BringChange2Mind and various other mental health organizations around the country. I am privileged to hear the stories of so many people struggling with mental health conditions. If I were conducting a research project I would sort all the "qualitative data" (the stories) and look for themes. Well, one doesn't have to be a researcher to find those themes concerning diagnosis and family. There is a re-occurring story of anguish, loneliness and loss. Countless people write to Linea and I letting us know that our close relationship and support is something they wish they also had. There is an absence of care for many who are temporarily or permanently in need. For every parent who turns away or doesn't know what to do or somehow gives the message that they are embarrassed or angry or not accepting of their child (no matter their age) there is a step backwards from a healthy lifestyle for the person suffering with a mental health disorder. A message is sent, "You don't matter", even if that is not what is meant.

I know that it is often very difficult to have a relationship with someone who is in the pits of mental illness. I know that often help is slapped away and therefore not offered again. I know that parents and family members often have their own problems and aren't able to offer support and assistance or can't even begin to figure out how to do so. But still....every person should have a circle of family available even if the people in that circle are not blood relations. A parent or family member or friend could simply ask, “How are you?” and “What can I do to help you?” and then, listen very carefully for the responses without judgment or blame.

There is a process called "Futures Planning" used to develop a plan for children and adolescents with disabilities. Some of the steps of this process might be useful here. These include answering the following questions:

What are your dreams?
Goals?
Fears?
Who can help you with these?
Who is in your inner, middle and outer circle of support?

The people identified in this process agree to provide an "unconditional circle of support". This might include family members, professionals and friends. Agreements are made between the participants and the person with the disability is an active partner EXCEPT when they are not able to do so because of their disability or illness. There are many who might benefit from a circle of care and support. I see the look of utter loneliness on the faces of people living on the streets and struggling with mental illness. Would a circle of care have prevented this sad life? I consult with a program for children and adolescents in foster care and I witness their own fractured circles. These children need a wrap-around system of care not broken apart every time they move from place to place, from school to school.

Finally I want to add that my daughter is not "lucky" that she has me, her dad and her family as she is often told. We are lucky to have her. Yes, it is difficult for families with few resources to support someone with mental illness and I know that we are privileged to have the resources that we do. I also know that this experience has provided me an opportunity to learn more than I previously could ever have imagined. It is because of both the terrifying experiences and the honesty and love offered that we are more thankful and joyous and…generally less worried about the small stuff!

I wish every person who is alone their own circle of care. Let us all be part of that circle.

Saturday, March 6, 2010

There's a Crack in Everything

Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That's how the light gets in
(Leonard Cohen, Anthem)

This post is dedicated to every single young person diagnosed with a mental health condition. I love the video that some kids created just "walking around in the muddy springtime filming dirt and generally looking goofy". I just love the creativeness and wisdom and general "goofiness" of youth. Please take a minute and listen to the words of Cohen's Anthem and watch the video produced by "Mahiwi".

The light came in with thunder and lightening and all things scary when my daughter was diagnosed with bipolar disorder. I have written about diagnosis before with suggestions for families and friends. One step removed from my personal experiences. Diagnosis is always tricky with any illness. The frightening part of it is the "wait and see". With bipolar disorder it is unnerving in many ways. Wait for a mania that can spin you out of control. Then wait for another one. Wait for a deep dark depression that can send you into a suicidal loop from which you cannot return on your own. Wait and see, wait and see. Try these meds, no these, no these. Whoops, these didn't work so well. Must not be just depression. And then there are all the feelings a parent goes through with the stages of grief from denial, anger, bargaining, depression and acceptance. Like the "poles" of bipolar these can come on top of one another or in completely unpredictable sequences. My own story coupled with Linea's provided me with first hand experience of these steps.

Denial. Hell, no, this is not bipolar! (whoops, was that anger?) No, we had seen nothing of mania. Yes, a severe, severe, depresson. No mania. Let it not be bipolar. That is a horrible "label". Read the papers. Crazy people have this diagnosis. This CANNOT be.

Anger. For me this took on the, "It's not fair" persona. This daughter didn't deserve this. She had done nothing to deserve this. Her life was going forward as she had planned and she had worked so very hard to get there. NOT FAIR. I know this is a western way of thinking. More than half of the world thinks the opposite. When something good happens they wonder, "Why me?" But still. Not on my watch. Oh yes, and there was that one time I yelled at my husband, Linea's dad. "I am doing the best I can!!!"

Bargaining. I really got into this one. I actually said, many, many times: PLEASE God or whomever, PLEASE give this to me. I can deal with it. She is only 19 years old. I can just go away somewhere and fight the good fight and win or lose but not her. PLEASE give it to me.

Depression. I will go see a therapist with you, daughter. I personally do not need this because I am a professional. I know this stuff. Whoops. Inside of me was a sad, broken little girl who was so very frightened and so unsure of what to do. I was supposed to be the mom. I knew things yet I couldn't fix it.

Acceptance. The crack let the light in. This illness has cracked open a deeper love and honesty in our family that we could have ever expected. We were a close family before but things have changed. Deepened. Strengthened. We are stronger. Broken pipes? Unexpected bills? Disappointments? Sorry, we have stood toe to toe with much worse. We almost lost our daughter. More than once. We are grateful. We are appreciative. We love deeper and stronger and although we certainly forget at times, we appreciate every minute of health and happiness.

I was going to write a blog on the diagnosis of bipolar disorder in adolescents and young adults. My thoughts took me in a different direction. I hope that you are not disappointed and that somehow this touches you. Thank you for reading. I love you Linea! Thank you for letting the light in. (You, too, Jordan of my heart!)

Tuesday, March 2, 2010

Save the Amaryllis!

I have been out in schools this week observing my practicum students in special education classrooms. The two schools that I visited were both schools for kids who can't find success in the neighborhood school. In these classrooms are adolescents who are failing in almost every area of their young lives. They have lived in multiple foster homes, they have been victims of abuse, they are "credit deficient" towards graduating, they are poor, and they are at high risk of dropping out of school. They have "emotional and behavioral disorders"....and why not? My two graduate students overwhelmed me with their care and their skills working with these students. One of these students just finished his masters in teaching and was interested in special education so I recruited him for a second masters degree. So did Edgar (our Papi of the Mariners) and Holli Martinez with their commitment to assuring that we have teachers from underrepresented populations in our schools and more minority students become teachers. They do this through the work of the Martinez Foundation. The Martinez's join me in our shared pride of my grad student, Mr. DeLeon. The young students themselves were awesome and so worth the effort to provide them services and support to keep them in school and prepare them for life after high school. My own research tells me that over 50% of these kids will drop out of high school. The national research tells me that one high school dropout contributes about $60,000 less in taxes over a lifetime and if the male graduation rate were increased by only 5 percent, the nation would see an annual savings of $4.9 billion in crime-related costs. So what's with the amaryllis? I visited a high school that holds approximately 150 teen-agers, all at high risk of dropping out. They were there because they couldn't be successful in a traditional high school. Mr. DeLeon held them spell-bound as he taught them how to write a thesis statement. (Really!) Their interest peaked as the students wrote their statements concerning certain types of automobiles and basketball players. My grad student, dressed in slacks and a tie, holding court in a beat up portable behind a beat up school building, kept their attention for the entire time I was there by assuring there was relevancy in his lesson to their own lives and interests. So what's with the amaryllis? When I walked into the front door of this sorry and neglected school (not by the teachers or students) I noticed a gigantic amaryllis sitting on the counter in the front office. I have never seen one so huge. There were at least 10 large red, orange and white streaked blooms, all larger than my two fists. The secretary told me that they had a horticulture program and the vocational teacher babied this thing year after year. I was astounded. Astounishment turned to sadness when she told me that the program, green house and teacher would all be gone next fall. Budget cuts. The students love this class and are able to retreive science credits for their studies of plants and their work with the teacher, in the dirt, making real the words on the page. The research also tells us that to keep kids in school we must provide a relevent curriculum and for many of these young, disengaged and disenchanted students digging in the dirt, making things grow and understanding photosynthesis while experiencing it first hand is enough to hook them and perhaps help them take the next step to graduation, further training and employment. It might affect only a handful of the students in this school but these cuts are happening all over the country. As we push all students to reach No Child Left Behind we are leaving a few behind. Our most vulnerable kids are searching for mentors, support and a reason to choose school each day over everything else going on in their difficult young lives. The teacher knew how to nurture the amaryllis. We know how to nurture these kids. The cost of keeping this program is less than a handful of dropouts. The amaryllis will likely go home with the teacher next year and bloom again but what about Hector, Jorge, Conrad, Jermaine, Rashan, Mary, and Shatoya?

Thursday, February 18, 2010

Out of the Mouths of Babes

I am traveling from Texas to Wisconsin presenting at conferences with daughter Linea on transition services and support for students with mental health conditions. I sat in and listened while she presented to a youth group. The adolescents were fabulous as usual. (See previous blog from last year's conference). These students shared their diagnoses of autism, Asperger Syndrome, PDD-NOS (yes, a student said he had that diagnosis!), cerebal palsy, depression, Down Syndrome and other disabilities. As they talked about stigma Linea asked them for examples of times they experienced this in their own young lives.

Some of their conversations from the discussion between the students and Linea:

"They just think I am a stuffed animal." "They think I am totally weird." "But you aren't weird." "People pick on me because I am in the special ed gym but they think I should be in the normal education gym." "I get hit." "They call me the r-word. I sometimes want to kill myself."

And this:

"We are normal kids with disabilities." "We can be brave." "We can say, "Please don't do that. You don't know what we have gone through."

It was hard for them to share their strengths but they did. They are all on Facebook. They are part of a youth movement spreading across the country through their stories, their bravery, their courage and technology. Watch out world, here they come. Ready to teach us all a thing or two.

                                                          

Tuesday, February 9, 2010

When Should We Tell?


I have been promoting "telling your story" but with the caveat that not everyone is ready or comfortable doing so. In my professional world of special education I am particularly dedicated to preparing and supporting students with disabilities for life after high school. Reducing the horrific number of adolescents with emotional and behavioral disorders that drop out of high school is a top priority (more than 50% drop out!). Making sure that young people leave their high school with not only the skills to go on to training or college or employment but know how to find services and support is a goal. This is all part of "transition services" that begins by at least age 16 for students in special education. A really important piece of this process is for these young people to develop the skills to advocate for themselves. This skill is based upon self-determination which in turn is based upon self-awareness and self-knowledge. This means that kids need to know about themselves. They need to know what they do well, where they have interests and preferences, and what is difficult for them. Eventually they need to know about their disability. Many parents are very uncomfortable with this and likely worry through the night about what a "diagnosis" might mean to their child.

Telling your story is so much easier if you can start from your strengths and the things that you are good at. I have this crazy goal that every child will eventually run their own "meetings" beginning in middle or high school and into adulthood. Isn't that a sign of power....running your own meetings? These might be IEP (individualized education program) meetings, meetings with a guidance counselor, meetings with a psychologist, meetings with a counselor at a college or meetings with a job coach or an employer. Even if the young woman or man is not able to manage all of the meeting or the details she or he should definately be there. This means that we need to start early helping our children and students "tell their story". I have been in some really uncomfortable situations when a parent does not want their child to know that he or she has a "disability". There are ways to make this easier and actually empowering to the student. Here are my personal tips:

Begin with strengths and interests. What do you do well? What do you like to do? What do other people tell you that you do really well? (Me: big picture stuff, good ideas, language, reading, writing, speaking, empathy)

How do you best learn something difficult? (Me: quiet, calm environment, sour gummy bears, coffee)

When is it difficult for you to learn? (Me: tired, overwhelmed, interrupted)

What is difficult for you to learn or do? (Me: find my way out of a paper bag...or around a city, or in a hotel, or from my office to the Dean's office.....)

What are barriers for you and what help do you need? (Me: directionally challenged. I inherited it from my Mom. I can't reverse. GPS? Written directions.)

Discussion of long and short range goals should be part of this process with opportunity to figure out how to address the barriers or limitations. If there is a "diagnosis" in all of this I personally believe that it needs to be discussed as developmentally approriate and age-appropriate. I had a friend whose daughter had intellectual disabilities. When she was about 8 years old she asked her mom what "retard" meant. Her mom told her that it meant "slow". The daughter said that the kids had called her a "retard". After their discussion the daughter told the kids and the teacher the next day, "Retard means slow and sometimes I do think slow but I can learn thngs. It isn't nice to say to me. I prefer intellectual disabilities." Each family needs to decide how to approach this but it needs to be approached. I tested a man once that had learning disabilities and for all of his life (he was mid-thirties) he did not know what that meant or how to explain why he couldn't read or write very well but was well spoken and had above average problem solving skills. The explanation and his understanding of his learning disability was such a relief for him and he said he finally understood that he wasn't "stupid". So many people had told him he wasn't trying. Kind of like depression. With a diagnosis and an understanding it can be managed. Without either perhaps one should just "pull yourself up by the bootstraps".

Once a person leaves high school there is no more free lunch. If you need help finding or keeping a job because of your disability, including mental health conditions, you need to find the agencies that offer such services, prove that you indeed have a disability and be willing to keep asking questions, making phone calls and filling out paperwork. If you are unable to do that it is more than okay to have an advocate help you but you must either give them permission to do so or they must seek guardianship. Everyone has a story. Understanding our stories make is possible to share it when appropriate and necessary. Our stories should provide us with power.

Tuesday, February 2, 2010

Telling the Truth

     Why tell your story? I posted "my story" on this blog last Friday. Why did I wake up during the night with anxiety and worry? It is not as if I haven't shared my story before. It is not something that I have kept private. My youngest daughter, Linea, and I travel around the country presenting information about mental illness and adolescents, sharing research, best practices and resources. We share our own experiences. But something about seeng the faces of those with whom we tell our story makes a difference to me. When "my story" went out on the world-wide web I could not see the faces. I couldn't tell if there was acceptance or rejection, understanding or disdain, or a shared human-ness or a distancing. I tossed and turned. I heard the voices, "Why would you want to tell people?"
     A short recap on "the story": I was teaching a graduate class about children and adolescents with emotional and behavior disorders when Linea was "pulled out to sea". (The irony of it all!) Within that short winter quarter she was brought home from her second year in college, too ill to live 2,000 miles away and unable to continue in her studies. By the time the quarter ended she was hospitalized for a severe depression and soon diagnosed with bipolar disorder. At the time I decided to tell the truth to my students, my colleagues, my family and friends. The truth became more frightening and horrifying as the weeks and months went on. Sometimes I told the truth because I had no option other than simply disintegrating with the fear and the sorrow; with the inability to make things better. I wanted to find anyone who could fix my daughter. I wanted to share my grief and perhaps lessen it. I was unravelling. But my watchful mind was noticing the impact on others as they accompanied me on this journey in both small and large ways. There was an honesty that had perhaps not been there before. There were small changes in attitudes and there were the occasional "ah-ha's", so valued by a teacher. There were many who shared their own story or of someone whom they loved, often for the first time outside of their immediate family. In the beginning I most likely told my truth because I had no ability to do otherwise. I could not keep it hidden within me without falling apart. But as we moved forward and through this initial diagnosis and treatment Linea found stability. It was a wild and unpredictable time but finally, in fits and starts, it settled itself. (Unpredictable - What a mild word for that time of chaos and mayhem!)
     Linea and I settled into an agreement with this illness. I respected it, I hated it, I accepted it and eventually I chose to embrace the possibilities that came with it. These possibilities included joy and thankfulness for every minute and day of stability. It also deepened an honesty between Linea and me, and within our family and our friends.
     Linea and I had the wonderful opportunity to hear Kay Redfield Jamison speak about her own battle with this "insidious disease called bipolar". She noted that people are often unaware of the many who are living with mental illness and who are stable. It is much easier to keep one's story hidden when stable. It is much easier for me to put away the story of my daughter's mental health condition when she is stable. It is much easier to forget it, to pretend it is gone forever. But it does not go away. Stability is an every-single-day effort to stay healthy.
     Linea and I have spent hours discussing this and we are in agreement that we have a responsibility to share her and my story for the 1 of 6 adults and 1 of 5 young people who struggle with a mental health condition and for those who are unable to share their own story. I know many people who are not comfortable sharing such intimate information with either their closest friends, their employers or the world. I know many people who are unable to do so because they are too ill and using all their energy to stay afloat. It is okay.We are blessed with resources, knowledge, information and the ability to speak about our journey. We have a responsibility. We join BringChange2Mind, a non-profit organization created by Glenn Close, the Child and Adolescent Bipolar Foundation (CABF), Fountain House, and the International Mental Health Research Organization (IMHRO), to fight the stigma of mental illness and provide resources and hope to millions of people one story at a time. It still provokes anxiety but it is also freeing. Thank you for reading my story and allowing me to sort this out in my own mind. I would be honored to hear yours.