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!

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!

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.                                                                                                                                                                                                                          

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.

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.

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.

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!)