Cinda

Finding Peace

2012-01-30T06:59:00.000-08:00

Parents often don’t have time to reflect (or treat) the toll their child's illness is taking on them. Mom and/or dad are too busy trying to manage medical treatment, the emotional impact on siblings and other family members, and one-on-one care for their child. When a child or adolescent has a mental health crisis, it affects the entire family.

As a parent of a child who has been critically ill with a mental health disorder, have you experienced any of these symptoms? Read more at The Balanced Mind.

It Was More Than Teen Angst...

2012-01-18T16:12:00.000-08:00

Depression affects students of all academic levels, social positions and economic statuses.
Depression in children and teenagers has devastating impact on the crucial stages of social, emotional and cognitive development, with far-reaching and negative impact on these young lives.

One in five young people have some sort of mental health condition; one in eight has a serious depression.

Despite these daunting statistics, a mere 30% of these students receive any sort of intervention or treatment. The other 70% simply struggle through the pain, doing their best to make it to adulthood. If this were the case with child and adolescent cancer there would be an outcry from the public.

I know these statistics well. I know that educators have a unique opportunity to recognize and support students struggling with depression yet often are either unaware or simply aren’t sure of the severity or need for intervention and therefore do nothing. Parents may well be in the same camp. Is it “teenage angst”? Growing pains? Typical of a child who may be in the middle of a family crisis? A young person having problems with friends, feeling left out or deserted?

My daughter’s depression snuck into her life during her high school years (if not before) and even though I was teaching about depression to graduate level students, I did not recognize it for what it was: severe, life changing, and needing intense treatment. Yes, I knew she was anxious and sad and confused about her friends and their own issues. I knew she worried about where and what life would hold after she graduated from high school.

I was concerned enough to talk her into seeing a psychiatrist and therapist. Both diagnosed her with depression. The very words “clinical depression” startled me. She was still getting high grades in college preparatory course, participating and excelling in piano and voice as a young musician and keeping up with her friends and activities. She spent a few months taking an anti-depressant and then, unbeknownst to me, dumped the remainders down the toilet. We spent hours talking and she cried and she said she felt better and then she worried and then she thanked me for listening to her. We all assumed it was “situational”. Whatever the cause, it was depression.

I have had a unique opportunity to reflect on this as I was working my way through the final edits of the book that I wrote with my daughter, Linea. Her work is “real time” journals written in the midst of her depressions. As I read her words and mine I thought about what I should have done differently and eventually thought about what I did well, from a mother’s perspective, not a professional’s.

There were a couple of things I would have done differently but they are both big ones.
I assumed she knew that if she did not like the first therapist she saw she could go to another one. She didn’t know this. And if she did it would have been very difficult for her to change therapists or doctors without a lot of support from me. She didn’t know she could, she didn’t know how and she didn’t want to hurt anyone’s feelings.

I would have been much more cautious about her depression and encouraged (harassed? forced?) her to continue under a doctor’s treatment for much, much longer. As she says now, “Everyone benefits from a therapist!”

I think I did a couple of things right and Linea certainly contributed and taught me many things during our journey. We had and continue to have a very honest relationship. I know she didn’t tell me everything and it was only after reading her journals that I knew how severely depressed she was but she did talk to me about her worries and fears. I tried to never be judgmental or shocked by anything she told me or anything I read. I always trusted her to do the best she could and I always believed in her fierce desire to be well but I eventually realized that the depression was way beyond what she was able to handle on her own. It just took me too long.

My knowledge and understanding of the research and treatments for depression have shifted due to my personal experiences as a mother as well as a daughter of beautiful and strong women who battle depression. Depression is a brain disorder. Yes, there is situational depression but this, too, can turn into a depression that changes the thinking process, messes with memory, pushes away friends and family, causes physical symptoms and, as my mother says, is “more painful than any physical pain” she has ever experienced. And she has experienced much physical pain in her lifetime. I spent too much time trying to manage and “fix” the environment around Linea rather than helping her find the treatment to fix the illness going on in her brain.

I am thrilled with the Balanced Mind’s new partnership with Erika’s Lighthouse. I am moved and inspired by the voices of the young people featured on the videos. I encourage all of you to share with others and take full advantage of the webinars, resources and materials available about depression. Let’s make sure that our young people who have depression receive treatment and that everyone knows the symptoms and where to seek treatment for depression. Depression is treatable. Untreated depression is deadly.

Posted on The Balanced Mind blog.

Should I have known?

2011-09-01T20:43:00.000-07:00

I am immersed in the edits of the book that my daughter Linea and I have written together about our journey through bipolar disorder. As I work back through more than 300 pages of writing, I am struggling with the questions that the editor keeps throwing at me in the margins.

“How did your daughter convince you she didn’t need to see a therapist?”
“How did she talk you out of seeing a psychiatrist for two more months?”
“What were you thinking when she convinced you she was feeling better and that she should go on her planned trip outside the U.S.?”
“How were you so shocked by a potential diagnosis of bipolar disorder when you teach about it?”

I had to give a lot of thought before formulating my response. How had I not known?
When an illness is beginning its invasion, it can enter quietly, mysteriously, or with great fanfare. Reading back through the chronicles of the years leading up to her diagnosis, yes, I can now see it coming during those early years. But at the time, we never suspected a severe mental illness was on its way and that it would try its best to destroy her. I am sure you know exactly what I mean as I struggled with this.

In that time and place, I think we convinced ourselves that it (this depression, soon to be diagnosed as bipolar), was due to stress from school, worries about her future, fears for her struggling friend, all wrapped up in her drive to do and be her best. In looking back, there were indicators of what was to come but at the time these were merely hazy suggestions, whiffs of a more serious illness lurking.

After many discussions of a diagnosis and a major crisis, we met again with Linea’s psychiatrist. Linea sat there without speaking and I finally asked him, “How will we know if it is bipolar disorder?” He said, “We will have to wait and see.” I felt like I couldn’t breathe and my heart hurt as we left his office. Wait for what? It felt frightening and overwhelming and I didn’t know if I could keep from simply lying down on the floor and weeping. But I didn’t, and together we all “waited”. Eventually the pieces came together, the diagnosis aligned with her symptoms, and the treatment began to work. There was hope and recovery and stability.

I share this because I know now that we did the best we could given how this illness unfolded into her life. I also know that we wouldn’t have done anything differently had we known. We were present to her and with her, we listened, we waited and we trusted her to ask for help when she could, and when she couldn’t we made decisions for her. It has been painful, and I would give anything for my daughter not to have this diagnosis, but I also know that it has changed us all in many incredibly positive ways. She is an amazing young woman and every day I am so very grateful for her life. I wish you peace in your own journeys.
(posted on the Child and Adolescent Bipolar Foundation website under Blogs)

If it Doesn't Feel Right

2011-04-18T08:31:00.000-07:00

Bipolar disorder takes a family on a roller coaster of brain-driven moods right along with their child. In addition to the depression, the anxiety and mania, there are other symptoms that raise their fearsome heads and go after our children. Parents of children under the age of 18 are responsible to manage the many aspects of this illness and to help their adolescent move into adulthood with the skills to do this on their own or to have a support team in place for times when this is not possible.
I write this post without offering words of wisdom but rather to simply share a recent episode in our own lives with the hope of building community and perhaps offering encouragement to hang in there when times are tough.
My daughter, Linea, had been relatively stable for the last few years but as the leaves began to turn and our part of the world prepared for winter, depression and anxiety crept back and were soon running over her life. An eating disorder emerged and she began to rapidly lose weight.

ED had stalked her in the past, but it hadn’t received the treatment it deserved. At the time we either weren’t aware of the severity or it retreated before causing us to take too much notice. I think in the midst of her other symptoms it was lost amongst the rapid cycling. Now it was front and center.

Something Wrong
It took a few weeks but it suddenly hit me very hard that something was seriously wrong and needed to be addressed. There was a confrontation and discussion and a plan to seek serious treatment for her. Once again I was into something that I “taught” in my graduate classes but I realized I knew little about the research behind the treatment. She had an evaluation at an eating disorder clinic where she was diagnosed with ED. Seeing the words on paper was shocking. Hearing the statistics on outcomes for people with anorexia was terrifying. We were told that the severity of her illness demanded a partial inpatient 30-day treatment program (at the cost of $30,000.00 minimum). We were frightened and believed that these “experts” knew what was best.

But, I couldn’t sleep. Linea was so exhausted from her illness that she no longer wanted or could make decisions. I spent two days calling her treatment team and anyone else I knew in the field of ED.

Researching Treatments
My research on treatment strongly pointed to “individualized plans” that addressed the specific needs of a patient. Linea didn’t just have an ED, she had bipolar and her own unique temperaments and personality that didn’t seem to fit into the treatment program I observed at the eating disorder clinic. Finally we put together a wrap-around program for her that included her psychiatrist and her psychologist, both providers who she had been seeing for five years and who knew her well, and a nutritionist and additional psychologist, both who specialized in eating disorders. Everyone worked together. Communication was a key component. Her plan included not only therapy twice weekly, but documenting everything she ate and being held accountable for “turning the train around”, as her nutritionist described it. It meant eating lunch and dinner with family or friends every single day for at least two months or until her weight was stable again. This was a huge commitment on everyone’s part but once this plan was made I slept through the night. It felt right.

Although Linea is a young adult, living independently and managing her health care, there are times when help is still needed.

Happy Ending?
I was thankful that she was so open with us and asked me to go with her to doctor appointments and to the initial evaluation. The week of hesitancy and unease about the treatment plan was difficult as I tried to support her but still listen to my own feelings or intuition about the plan. It didn’t feel right and I have to say that it took a lot of courage for me to push back against the “experts” at the eating disorder clinic.

Linea has gained the weight back and, although she is still receiving treatment for the ED, she is once again in control of her illness. From her initial grief and anger about it “coming back” she has new skills, confidence and strength in managing her illness. I, too, was hit hard by the reminder that bipolar is life-long but was once again thankful that we have the resources to provide treatment. I am more committed than ever in the fight to assure everyone has such support.

The Insurance Company
Stay tuned for an update…I am still fighting the insurance company about paying the nutritionist. They initially approved the ED treatment program that included a twice daily meeting with a nutritionist but it was “built into the total cost” and didn’t have a “code”. Our plan changed January 1, 2011, to “three visits to a nutritionist in a life-time; exceptions made for diabetics”. Oh yeah?!?! The American Psychiatric Association states that ED can’t be treated without a nutritionist. I have submitted an appeal that includes letters from her psychiatrist and psychologist. I made sure they knew how much less the plan we put together cost in comparison to the partial in-patient program. I also pointed out to them how much less expensive it was than hospitalization. The appeal has now been moved up to the next level. We shall see….

I suppose I can’t resist a bit of advice. You know your child best. You are the expert. If it doesn’t feel right gather all the strength you can find and do some research and speak up. Share your story with others so that together we can make a difference in the system of care for children with mental illness.

Published on the Child and Adolescent Bipolar Foundation's Blog.

There are no guarantees....

2011-03-16T13:10:00.000-07:00

Mindfulness is the aware, balanced acceptance of the present experience.
It isn't more complicated than that.
It is opening to or receiving the present moment, pleasant or unpleasant, just as it is,
without either clinging to it or rejecting it.
-Sylvia Boorstein

If one lives long enough, it becomes clear that there are no guarantees in life. There are moments, days and weeks when the lack of control feels overwhelming. This seems particularly true when a loved one is struggling with a chronic illness. I have a mother and a sister struggling with autoimmune diseases. My mother has fought this battle since my earliest memories. I lost a brother to suicide. Every family walks with joy and pain, wonderful bounties and excruciating losses. I often need to remind myself that facing these issues is as emotionally painful for me as anyone else around the world, yet my burden is lessened simply because of the luck of the draw. We are an upper middle class family born in a country with many, many resources. Things could be so much more difficult if we were living in poverty, didn’t have family and friends’ support, couldn’t read or write or speak the community language.

My daughter lives with bipolar disorder. Sometimes she “has” bipolar disorder and sometimes she “struggles with” bipolar disorder and, yes, sometimes she “suffers” from bipolar disorder. Yet it is still a painful struggle, not only for a person facing a chronic illness every single day, but for those who love him or her. My daughter lives with bipolar disorder. Sometimes she “has” bipolar disorder and sometimes she “struggles with” bipolar disorder and, yes, sometimes she “suffers” from bipolar disorder. I, too, have various relationships with her illness. When things are going well I am particularly aware of our incredible blessings or luck or whatever you want to call it. Yet when my mother falls or my sister struggles with new symptoms I find it difficult to count my blessings while fighting the worries that well up from my heart. When my daughter’s illness takes her into bumps or dips or even on roller-coaster rides I struggle against fear, anger and grief. Yet, I have no control. There is so much that I can do but also so much that I cannot. I cannot fix it or make it go away. I have tried negotiating with my Higher Being when my daughter was the sickest: “Give it to me. Let me have it. My daughter is young and just beginning her life. I can handle it.” But the answer is always, “No, sorry, not possible.”

Finally and ultimately I have no choice but to simply accept it. As a colleague once said about his relationship with his very ill son, “Sometimes all I can do is sit by the swamp with him and just be.” Just be. A concept so very difficult but something that I try to practice every single day. A concept exceedingly tested by the experiences of living with a chronic illness. I also remind myself that there are many positive and wonderful things that have come from this journey. Sometimes these are difficult to remember but so true: honesty, love, deeper friendships and relationship, commitment, strength, humility and patience. There is wonder at the strength of the human spirit of my daughter, my mother and my sister to move forward when faced again and again with incredible pain and worry beyond my own experiences. We are in this together. I will continue to work towards acceptance and embrace the simple joy found in the love of my family. I wish you the same.

From my blog at Child and Adolescent Bipolar Foundation.

Not Just for Kids!

2011-02-14T08:33:00.000-08:00

Thought someone might enjoy the blog I wrote that was just posted on the Child and Adolescent Bipolar Foundation website.

Remember, during a crisis act like a thermostat, not like a thermometer. This is one of the many things I try to share with my graduate students during the class I teach on emotional, behavioral and mental health conditions. Many of the graduate students are also parents and have told me that the suggestion of acting like a thermostat rather than a thermometer is also helpful to them in their homes. This analogy means staying level when your child’s emotions are running wild. Instead, we often act like a thermometer, responding to the distress by heightening our own emotions in response.

This response is called “mirroring”. We have a neural “wi-fi” in our brains that is deeply affected by the actions and behaviors of others. Have you ever noticed that when a discussion gets loud or heated you can change the volume of another person by merely lowering your voice and slowing your speech? The frontal lobe of our brain is the “high road”, working with logic and impulse control and it doesn’t fully develop until the MID-TWENTIES!! The “low road” is, in fact, located down low in our brain and it is the “fight, flight or freeze” part of the brain as well as the master of mirroring. When kids are in stress and their behaviors are strong and negative, adults will mirror those behaviors unless the brain is trained to do otherwise.

Example of mirroring:

1. Stressful event occurs (frustration, failure) which activates the child’s (or adolescent’s) irrational beliefs (adults are unfair, nothing good ever happens to me).
2. These negative thoughts trigger the child’s feelings.
3. Feelings rather than rational thinking drive the child’s inappropriate behavior.
4. Inappropriate behavior (yelling, threatening, refusing to speak) provoke adults.
5. Adults don’t only pick up on this behavior but mirror the behaviors (yell back, threaten, etc.).
6. This negative reaction increases the child’s stress, escalating the conflict into a self-defeating power struggle.
7. Although the child may well lose the battle there is no winner. The irrational beliefs the child had in the first place (nothing good ever happens to me) are reinforced and she or he has no motivation to change or alter beliefs or behaviors.
Children and adolescents must be taught to take the high road. Adults must remember to take the high road.
Stay a "thermostat" even though it is hard. Don’t be a "thermometer" and fluctuate with the temperature around you. Try to:

1. Use “I” messages (less threatening, less likely to promote aggression, good modeling of an honest exchange, interrupts power struggles and releases stress in a healthy way).
2. Step out of the conflict if you feel yourself mirroring. Tell the child you do want to talk to them and can when you are both calmer.
3. Encourage the child to take a break and practice self-calming techniques.
4. Listen carefully for what is not being said (decoding) and try to respond to underlying concern with I messages.

I personally know how difficult this can be, particularly when you are exhausted and it doesn’t seem to get any better. Hopefully these suggestions are helpful or a reminder of things you already know. Find time to take care of yourself. Take a walk, join a book club, do yoga, meditate, stay close to friends, find a group or organization that can support your spiritual side, find time to talk to you partner about something other than your child or adolescent, garden or go to a park or conservatory, pet an animal, write in your journal, and enjoy a small pocket of peace wherever you find it. Remember to breathe.
This is the direct link to the CABF Blog.

I Love Second Graders

2011-02-09T20:08:00.000-08:00

“Did you know that Ms. Barr is going to CANCEL recess? What if that were true? How would you feel? What emotions would you have?” My graduate student asked this of four second grade students in a special education classroom. They may all have learning disabilities and struggle with reading and writing but there is nothing wrong with their critical thinking skills. They said they would feel emotions like:

Mad.

Sad.

Annoyed.

Happy. “I could stay inside.” (On those rainy days that might be nice!)

Disgraced. “Yes, I would feel disgraced if I had to stay in every single day,” said Bao.

Embarrassed. “Why would you feel embarrassed?” asked the teacher. “I would feel embarrassed because we would be the ONLY school around that didn’t get recess!” answered Lillie.

Cancelled recess wasn’t true of course, but it was a writing prompt to which each child could personally relate. They wrote a letter to Ms. Barr telling her how they felt about it and why they felt that way. The children struggled to sound out the words, working hard to put their own thoughts down on paper and to share how they felt with another person. This is writing!

Such a fun day I had. I love winter quarter when I have practicum students out in schools and I have the opportunity to visit, watch, listen, laugh and learn. One small boy with significant bouncing and rocking issues chanted, “Think. Think. Think. Think,” in time to his movements as he sounded out unknown words. I am going to try this technique next time I have a difficult writing task.

Thank you for sharing your day with me!

It Wasn't on my To-do List

2011-01-04T21:16:00.000-08:00

Having spent two weeks at home over the holidays I went back to campus slighty caught up with my list of many things I must, should and could do. I was in my office early this morning and my phone was ringing as I unlocked my door. It was a graduate student in our program. She said she had listened to me and the other professors in this university with the strong emphasis on social justice; our push to "get involved" and "not lose kids because no one paid attention". She had sent me an email at 4:00 a.m. because she couldn't sleep and wanted to make sure I had read it. She had given a neighbor boy a ride home, along with her son and other students in her local high school. The boy, let's call him Bob, told her he was worried because he was going to turn 18 in "40 days" and would no longer be able to live in his foster home. He had been in 32 homes over his short life and without ever finding a permanent family, services would be over in little over a month. He didn't know what he would do or where he would go. My grad student contacted the high school counselor to see if there was a plan in place to help this young man or if anyone was even aware of his situation. The counselor told her that her graduate program is unrealistic and idealist and in the "real world" schools aren't responsible for this kid's living situation.

I work on a project with Treehouse, an amazing organization that supports foster kids with tutoring, wrap around services and case management. I told her I would call my "contacts" and see what I could find. In Washington Bob's situation is not unusual. Foster home placement ENDS at age 18. Also not unusual is that these kids, most who have not finished high school, drop out of school, live on the streets and many end up incarcerated. But someone stepped up and got involved and pushed me to set aside my "to-do" list and make some calls. Connections were made. Treehouse educational advocates are experts who work with schools, social workers, foster families and students to resolve difficult issues and remove barriers to foster kids’ school success. My student is connecting Bob an educational advocate.

I don't know what will happen next for "Bob" but someone paid attention. Someone couldn't sleep thinking about Bob, an almost 18-year old, who had never had a stable home and would soon not have one at all. She couldn't sleep, unrealistic and idealistic person that she is, so she sent an email at 4:00 a.m. seeking advice. This is the real world and we so need people to make a small difference. Stay tuned.

Grown-up Children

2010-11-20T16:10:00.000-08:00

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!

Help Children and Youth with Bipolar Disorder: Just a Minute

2010-11-09T20:07:00.000-08:00

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.

What's going on, anyway?

2010-10-27T21:13:00.000-07:00

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?

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

2010-10-21T20:25:00.000-07:00

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.

France

2010-10-09T17:19:00.000-07:00

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?

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

2010-10-05T05:00:00.000-07:00

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.

Hope for a Balanced Life

2010-09-07T08:36:00.000-07:00

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

Consumer or Hero?

2010-08-23T16:56:00.000-07:00

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!

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

2010-08-18T15:00:00.000-07:00

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!

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

2010-07-27T20:09:00.000-07:00

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)

Happy Summer!

2010-07-20T21:16:00.000-07:00

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?

What WERE we thinking?

2010-06-29T08:00:00.000-07:00

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!

Dearest Daughter, A Love Letter on Your Graduation

2010-06-09T06:18:00.000-07:00

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.....

Empowerment!

2010-05-30T14:05:00.000-07:00

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

2010-05-16T16:28:00.000-07:00

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

2010-04-26T09:39:00.000-07:00

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

2010-04-19T21:39:00.000-07:00

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

2010-04-04T21:23:00.000-07:00

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?

2010-03-17T08:09:00.000-07:00

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

2010-03-06T18:25:00.000-08:00

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!)

Save the Amaryllis!

2010-03-02T20:22:00.000-08:00

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?

Out of the Mouths of Babes

2010-02-18T20:41:00.000-08:00

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.

When Should We Tell?

2010-02-09T21:36:00.000-08:00

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.

Telling the Truth

2010-02-02T21:43:00.000-08:00

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.

My Story

2010-01-28T22:45:00.001-08:00

We (the daughter and I) have decided to make February a month of sharing stories to fight stigma. So, along with our newly posted video on YouTube we are going to start sharing our stories and learnings on our blogs, starting conversations about it on our Facebook and Myspace site and commenting on it on our Twitter page. So, visit us, chat with us, and learn with us. Here is a piece of a very long story...

I had lost a brother to suicide. I knew to keep careful watch on my children’s mental health. I was qualified to do so. I dedicated 10 years of my life formally studying child and adolescent disability, and emotional and behavioral disorders in bachelors’, masters’ and doctoral programs. I have a vast amount of knowledge based on education, research and experience in the field of “transition services” for youth with disabilities. In other words, I know stuff. I have spent hours and hours teaching and working with kids who are failing in every aspect of their life. I have talked to parents as the wise woman who offered words of support and advice. I teach educators and school psychologists and school counselors as a professor in a graduate program. I teach them the skills to assess, educate and support children and adolescents with disabilities. I thought I knew a thing or two. I was not prepared.

Life was moving along and I was in a good space five years ago. Our youngest daughter, Linea, was off to college to study classical music performance and our oldest daughter was happily married and developing her own business in the world of art. My husband and I were ready to experience the empty nest. I didn’t know enough. I was not prepared.
Less than two years later I was flying back from Chicago one more time and I was crying. I sat in my seat and without making a sound the tears ran down my face over Minnesota, North Dakota, Montana, Idaho and Washington. Why now? We had brought Linea home from college with a severe depression. She was hospitalized less than two months later. She was suicidal, she was non-responsive to medications, she was ill beyond my wildest imagination and all the training and education and wisdom that I might have thought I possessed seemed worthless. She dug her way up and out of that depression but to a flat and grey place. She was back in school nine months later. And then she was hospitalized again. Her meds were changed. Her treatment plan was all consuming. She went back to school after each set-back and she continued to talk to me with honesty and love and a dim spark to be well and to live.

I had not let go through all the days and nights of this battle. Her dad and sister and our family spent those months in a place of hell but I fought with all my might to keep her alive. On that flight home from Chicago after she was finally back in school it hit me hard that I could not fix her pain. I couldn’t stop her thoughts or change what she did with those thoughts. I couldn’t be with her every minute and I couldn’t get into her brain and chase the terrorizing illness away. I could be there for her and I could be physically with her but I could not be in her. This was her battle and we could only support her in that fight. We could bring her home from college, we could hospitalize her and we could find the very best doctors in two cities more than 2,000 apart from each other but I could not keep her safe every minute of every day. I felt panic and terror. I sat in my seat for the five and a half hour flight and I thought and thought about this. I went around and around in my head and finally settled on my trust in her. Hadn’t she proven herself a valiant fighter? Hadn’t she asked for our help to hold her and be with her and stay close to her when she was near losing the battle? By the time the plane landed I had it figured out in my own mind. All I wanted was for Linea to find peace and happiness. I wanted her sense of humor and her excitement and joy in living to surround us all. I let go of my fear of her and me and our family being judged by others and…I let go of my pride. I know that everyone who truly loves Linea would not judge her. I am even prouder of Linea than of her gifts. I am humbled by her strength. I can breathe. Perhaps our story will offer hope to even one family.

"self-portrait" taken in hotel bathroom,
(presenting at conference in Savannah)

A Trail of Love

2010-01-27T20:48:00.000-08:00

If you read my daughter's blog you know that we have lost a wonderful man from our lives. Most significantly he is missing from the lives of his three sons and his beautiful and talented wife. As well, by one degree of separation, a 3-month old baby left his family behind yesterday without warning or understanding. Death is a gentle and sometimes harsh tap on the shoulder reminding us to savor each minute, each moment of joy with our families and friends. It is a reminder not to fumble through life without paying attention. This morning as I was rushing to leave my house for campus I stopped and noticed a beautiful morning. I was thankful that I could see so much of this incredible world from my own front door. I know that there are millions and millions of people who will never see the sight of these magnificent cedars that grow on our property. I looked up and around and I remembered a life that has left us but leaves a trail of love and family behind as he moves on into the next space. I hope you can view the video and that you take a moment to sigh and be thankful for a moment in your life. Yes, I know I shot it sideways but who knows from what angle someone might be looking down upon us?

Ahhhhhh, Parents!

2010-01-24T20:27:00.000-08:00

I have been away for a week providing training and technical assistance to a school district in Hawaii. Sounds like a plumb job and, yes, the weather was beautiful, the sea is always inspiring and the flora and fauna are breath-taking. The special educators have the same challenges and more that we have on the mainland. But on my flight I was thinking about the parents who are not able to take a six hour flight to paradise or take even an hour to relax and do something just for them. I wrote the following somewhere over the Pacific Ocean. The picture above is taken out the window. See the reflection of the plane in the water?

I have been thinking a lot about parents, particularly parents of children with significant disabilities. As a professor in special education I define significant disabilities as serious or severe health conditions, difficulty or inability to speak, difficulty communicating basic needs, inability or difficulty with everyday life skills such as feeding, toileting, and participation in leisure time activities, and limited fine and gross motor skills. I also include children and adolescents with severe mental health conditions that make a normal life impossible. This definition is not inclusive but I think you get the idea. An expecting mom and/or dad are expecting in many ways. They are expecting a baby who is healthy and they are expecting a wee small one who will meet milestones comparable to their peer baby friends. They are expecting some little person who will learn to say, “I love you”, and will eventually grow into adulthood with a life of their own while still keeping a loving relationship with their parents. There is endless grief when things go awry. Initial and ongoing grief is part and parcel for parents who have a child with a “significant” disability. Eventually there are ebbs and flows of this grief. Life is readjusted and some expectations fade and many more change. Some degree of acceptance comes (and goes and comes and goes). Over-riding all of the emotional and psychological aspects of parenting a child with significant disabilities is the non-stop, on-going care of this child. Remember the early days of a newborn? This little package of heart and lungs and skin and soul is yours and completely relies upon you for life. It is exhausting and exhilarating…..and although it seems endless, it is not. Soon the baby sleeps through the night, learns to walk, communicate, use the potty, socialize with other little persons and adults and moves up and away from mommies and daddies.

This is not the case for a child with significant disabilities. The care is never-ending. Parents of these tiny babies have signed on for the long stretch. I listen to and read the thoughts and worries of these parents and of the endless care they provide as they share their day to day concerns, joys and lives. Remember, “Walk in my footprints for a day. You will understand.” I haven’t and I cannot. I have been the teacher of these children and currently I spend hours and hours assuring that the future special education teachers, school psychologists, school counselors and the occasional general education teacher know how to assess, teach and support these children and adolescents and that they are prepared as best as possible to be the person in their school setting who might make a difference in these children’s’ lives. But I have not spent 24 hours with a child who needs 24 hours of my care and skills to even survive. The parents of these children and adolescents and young adults and often old adults are the experts. You struggle daily and hourly with the weary work of physical care, the night-time worries of “what if?”, “what then?” and the day to day struggle to find and keep services and support for your children. You live with secret guilt. You live with secret anger. Sometimes you are brave enough to share both. You live constantly with fear. You are the heroes. You are the wisest of men and women. Parenting a child with significant disabilities is love on overload. I listen to you and I learn. Let us all support you in every way that we can.

See Me

2010-01-11T09:00:00.000-08:00

I picked up the phone and gave my name to the nurse/guard on duty at the front desk. I was buzzed into the locked psychiatric facility. It was a better place than "Center", down the hall and around the corner. I could keep my purse with me. I could wear a belt. I was still deeply frightened and uneasy about this place. My beautiful daughter was here, locked in with many people from all walks of life but a large number from straight off of the streets. I was terrified when we started this journey and never stopped worrying about Linea's safety. Although the nurses were always caring and respectful there were many more of "them" than of staff. I had spent my life working in the field of disabilities. I was comfortable around children and adults with the most significant disabilities. I had worked in the trenches with adolescents with severe behavior and mental health problems. I had heard all the language howled out in fury and madness. I had witnessed the aggression of human beings unable to hold back their fear and anger at the world. Yet in this place I was deeply frightened for the safety of my daughter. I had preconceived and deeply held notions of the type of people who were incarcerated (sorry, hospitalized!) with my daughter. I wanted her daddy to stay with her at night, sleeping beside her bed, keeping her safe from someone...words I couldn't say even to myself. The crazies. The ranting and raving lunatics who were years older, bigger and with much worst pasts than hers. Don't get near my baby! I couldn't say it aloud because I am educated, open-minded and very loving of the world at large. But here I was and I was completely terrified.

We were allowed to see my daughter for 30 minutes at a time and I didn't miss those times. I finally asked the nurses if we came to see her too often. I was told that the more time families spent with their loved ones the better and quicker the recovery. "Why aren't there any other families here?" I asked. They just don't come, I was told. Or there is no one. I was even more anxious about leaving her alone in this place.

After my visit I left the unit and got into the elevator. The door closed. I was standing in this small space with one other person. A very tall, large man from the unit who had "earned" a fifteen minute smoke break, alone, without the posse tagging along. Here we stood waiting for the elevator to drop us down to the first floor. I do not want to admit this but I will. My heart was pounding and I was considering stabbing a button and getting out on the next floor. And then he spoke to me. "How is your daughter doing?" he asked, in a thick Eastern European accent. (Why do you want to know? How do you know her?) "She is doing better," I said, the pounding of my heart increasing.

"It seems not so fair for the young ones here," he said. "Her, I pray for. Me, I have some trouble with the drink and come in here to try to get well." (I am so, so sorry I was judgmental. I am so sorry I was frightened of you. I am so sorry I did not look at you, at your face, into your eyes. Forgive me.) "Thank you," I said. "I hope that you are feeling better very soon." (Thank you for teaching me. Thank you for looking at me. Thank you for treating me like a fellow human being. Thank you for being a better person than me and helping me to take a step forward.) The door opened and I headed back to my university and he to the small terrace for his fifteen minutes of time alone.

A Great Good Place

2010-01-08T08:00:00.000-08:00

Wouldn't you want to be in a community space that is full of people from every background, and from nations around the world? With people that are healthy and not so healthy, abled and disabled, with varied interests and talents and with a conglomeration of people outside of your normal safe place in the world? I suppose there are people in the world that don't want this but I do. There are a few places that meet this expectation and we happen to have one close at hand.

There is "friendly community shopping center" located in what is considered the "Eastside" of the Seattle area. This part of the region is known primarily for the wealth of its residents including one former CEO of a quite well-known software company. Nestled a few miles from Microsoft's campus is this amazing place called Crossroads. It was founded by Ron Sher, referred to as the Suburban Soul Man by Seattle Metropolitan Magazine. I wish for more such places. Crossroads sits 3 miles from the very high end shopping center that houses Neiman Marcus, Jimmy Choo, Louise Vuitton (if you don't know who these people are, good for you!), etc. etc. but in a very different neighborhood. The neighborhood has many languages, people with low or no income and multi-family housing living next door to middle class and upper middle class single family homes, all close to Crossroads. Sher, a committed environmentalist with a Ph.D. in agricultural economics of all things, was inspired by the notion of a "Great Good Place". The commitment behind Sher's work was the notion of a gathering place that welcomed "all comers from the prosperous to those with little or nothing to spend". I love this place. On any night of the week I want to stand up and cheer at the mix of people gathered in this great good place.

This is indeed a place of diversity. Yes, there are many people from a variety of cultures from around the world. There are also groups of young and older adults with developmental disabilities sitting with each other or BETTER YET with all kinds of people, playing games, laughing, talking, eating. There are great-grandmama's and papa's gathered together with friends or with family members. There are college students on their laptops tapping away or conversing with their equally focused friends. There are awkward middle-schoolers, too young to drive but finding a place on the bus route (and acceptable to their parents as a hang-out) and able to eat a meal together for less than six dollars. There are wheelchairs and walkers scattered amongst the crowd for various types of people. There is frequently a man buzzing around in his electric wheelchair, well known to the merchants and the "regulars". He is very physically and cognitively disabled and has great difficulty talking but he is completely comfortable in this community without an assistant or "aide" to follow him around. He watches the giant chess game for awhile, orders Mexican food which is prepared and brought to him in a way that he can eat it. He browses the bookstore, has an ice cream and ends up at the coffee shop.

The satellite library is always completely full, with computers available for all sizes and shapes of people. Recently I watched as a story hour unfolded with tiny toddlers gathered around. The story was in Chinese. Children of every background huddled together on the floor as the exuberant leader read in such a way that it didn't matter if you were one of the 3-year-olds that didn't speak Chinese. There is much to do. There is a second hand bookstore (oh yes!), retail shops and a mini-city hall with translators and answers to questions about public health, energy assistance and health insurance. There is funding and volunteers from Microsoft and United Way assisting with tax preparation for families in need and mostly lots and lots of fun. There is a stage with open mike nights, nights with tiny children playing violins bigger than themselves, bands and mini orchestras and nightly music from cultures around the world. The elderly put aside their walkers and lean on each other in a slow two-step. The children jump and chase and keep time with the flashing lights in their shoes. The two young adults with intellectual disabilities exchange a shy kiss as they push each other around the dance floor. Languages from around the world mingle with the smells from the food court. Indian, Thai, Greek, Mexican, Russian, Japanese, Chinese, Korean, and more. I can have tika masala, bubble tea, pho and a baklava for dessert. All prepared by people for whom this food is their own and who are making a new life in another country far from their home. Everything is recycled. If it is busy the customers clean up after themselves. We share tables. We recognize the specialness of this great good place. Where is yours?

Karma and Impossible Things

2010-01-03T21:30:00.000-08:00

One definition of karma is an action or deed which causes an entire cycle of cause and effect. Serendipity is good luck in making fortunate and unexpected discoveries. We have had a combination of both in the last few years and in our journey to meet our agent. My daughter and I have written a book together and are working to get it published. Before I tell you the fascinating tale of our agent, let me wax on (literary term) about writing for a bit. I know that there must be hundreds and hundreds of books that have been written but never published, laying around in drawers, on old floppy disks (remember those?) and on hard drives. But never published. Never read by an agent. Never sent to a publisher. It is hard, hard work to move a good idea or a burning need to write onto paper, day in and day out, writing, writing, writing. It is equally hard to find an agent by presenting a well-written proposal only to turn around and re-write the proposal again and again until it is ready to go out to a publisher. The majority of new authors or academic authors write in their time between (paid) work and family. I think it is alot easier to let a good idea or a somewhat completed book languish in the recesses of a dark hole somewhere than do all the hard work to get something published. The good news is that we signed with an agent October 1st in New York City. It was amazing and more than exciting. We spent a full year of work preparing all that was requested for this next step in the process of publishing a book. Now for the karma/serendipity part of the story.

We flew out to New York to meet with our agent with anticipation and a strange feeling of coming full circle. New York was a place of great hope for Linea. She first went there as a high school senior, singing with a college ensemble at an international jazz festival. While in Chicago majoring in music performance her goals were centered in New York. There were many actions in the next few years causing an entire cycle of cause and effect. She became ill and was diagnosed with bipolar disorder. She took a medical leave from school and was hospitalized. She returned to school and was hospitalized again. She fought and struggled and somehow was able to stay upright while trying to manage this new and insidious illness. Linea transferred universities and will graduate this year with a degree in English and creative writing as well a three years of credits towards a degree in music performance. After all of this, we were in New York City in the fall of 2009. As we followed the directions to our agent's office in Union Square Linea pointed to a bench in the park directly outside of the office. "I called you from there, crying", she said. "Remember?

I remember. It was her last year in Chicago. She and three friends flew to New York City. It was the week after Christmas and husband Curt and I had gone to the remote and beautiful Ucluelet on the Pacific Rim Trail on western Vancouver Island, British Columbia. It is a place as far west as you can get in North America. While in NYC Linea had her wallet stolen with all her identification, money and her credit and debit cards. She was barely well and didn't need any additional stress in her life. I was frightened for her as I stood in the pouring rain and the exact spot in order to get cell phone coverage while she cried from over 3,000 miles away. Yet she stayed steady and her friends stayed by her side as she filed a report with the NYC police and did all the trivial and complicated details involved in losing one's identify and money. Two years later we were in New York, signing a contract with an agent for a book about this journey, not twenty feet from where she had called me. Sometimes you just have to believe that there is a bigger plan for each of us. I have said to Linea so many times, "Trust the Universe." Even times when I didn't have much faith left myself but somehow I still had a tiny speck of curiousity and hope about what might come next. Sometimes I just had to believe in impossible things.

While we were in NYC we made a quick trip through Central Park. We came across the beautiful bronze sculpture of Alice in Wonderland, commissioned by George Delacorte and unveiled in 1959. Linea has always loved Alice in Wonderland. For about two months around age five she would only answer to "Alice". She knew most of the lines from the 1985 movie.

Alice laughed. "There's no use trying, "she said. "One can't believe impossible things."

"I daresay you haven't had much practice," said the Queen. "When I was your age, I always did it for half-an-hour a day. Why, sometimes I've believed as many as six impossible things before breakfast" (Through the Looking Glass, Lewis Carroll, 1865).

Karma? Serendipity? I never want to quit believing in impossible things.

Horologe for 2010

2009-12-31T13:28:00.000-08:00

I have a beautiful horologe or hourglass filled with black sand. I imagine that the sand comes from Kaimu Beach. Hourglasses were used both to keep track of time and for navigation. Although assumed to have been used in the 3rd century and carried around as timepieces the first evidence of the existence of the hourglasse was in 1338, depicted in a fresco by Ambrogio Lorenzetti. Ferdinand Magellan kept 18 hourglasses per ship as he navigated the globe. How did I learn this? Lost in Wikipedia of course! Fascinating!! My hourglass does not help me with navigation unfortunately but it is a constant reminder for me to slow down. When it was new to me I used it daily to block an hour of uninterrupted writing time. Over the years that ritual has slowly unraveled as have many resolutions made at the end of years past. I do love this time of year because, at least for me, it is a time for renewal and new goals, some which will be met and some not. Gradually over the years it seems that I slowly meet a few more. Time to turn the hour glass over again.

Temperance bearing an hourglass; detail
of Lorenzetti's Allegory of Good Government,
1338.

December 29, 2009

2009-12-30T07:15:00.000-08:00

The morning began with fog...it "comes on little cat feet. It sits looking over harbor and city on silent haunches and then moves on" (Fog, Carl Sandburg, 1878-1967).

Soon the sun was out and coming through the cedars and firs.

Stop, stop and listen for the bough top
Is whistling and the sun is brighter
Than God's own shadow in the cup now!
(The Blackbird of Derrycairn, Austin Clarke, 1896-1974)

December 26, 2009

2009-12-29T09:41:00.000-08:00

I have decided to share photos for the next few days as a way to stay centered in the break between the end of one year and the beginning of another. This was taken on a walk on the beach in West Seattle. Note the paddle surfer is wearing shorts. Quite a contrast from a year ago....

Decorations of the Season

2009-12-23T09:58:00.000-08:00

Happy holidays, merry Christmas, and a peaceful, blessed and joyous New Year to all! It is a time of mixed feelings for many. There is a busy-ness as people rush from frantic activities to their overwhelming "to-do" list and push onward and forward. There is excitement particularly for children as they participate in their own events at schools and churches, synagogues and with their families. There is also a sense of bah-humbug, anxiety, depression and a general irritation that can strike at any moment or rests within throughout the season. The singers can irritate, the traffic can madden and the lights and trees and tinsel can annoy.

Personally, I love the decorations of the season. We walked through the local botanical gardens last night and not only were the lights beautiful but it was inspiring to think of all the hours and hours of volunteer time spent stringing millions of lights. Children oooohed and aaaahhhed as the skipped and tunneled through the crowds. Grandparents and great-grandparents slowly made their way along the pathways, supported by their families. Through a partnership of the city, parks, a local radio station, local merchants and thousands of volunteers preparing for months the light display is magical. Some find the Christmas crowds overwhelming. I find it comforting, at least in short durations. It confirms my belief in my fellow humans as we gather together to appreciate the work and beauty of this light display. This morning the newspapers scream out the chilling news of another attack on two police officers. Our community has been under fire. Five officers killed and three seriously and critically injured since October. Two of the three attackers killed by return gunfire. More shootings on a daily basis darken the season. A mother and her baby were shot and killed just last night, in their home, by a man with a restraining order. We could be walking in terror each minute of each day based on the onslaught of news n our world. Yet our time together last night simply enjoying a light display gave me a sense of all the good, ordinary, and kind people on this earth.

Nature provides her own decorations as well. We have a 30 foot holly tree in our front yard that is full of red berries nestled within the impossibly glossy green leaves that cannot be replicated by man or woman. When I am tired of the crowds of the holidays I stand under this tree and I am filled with an equal sense of peace on earth. I love this tree when the berries are lit by sunlight, in the mist and rain, and occasionally like last year, covered in snow. A fleeting feeling perhaps, and fragile in this current world but treasured and kept in a special place in my heart. Merry Christmas to all...and a wish for peace on earth.

Initial Diagnosis

2009-12-16T14:15:00.000-08:00

A special place

Mental health conditions can strike any time of the year and research indicates that depression is particularly sneaky this time of year. A new diagnosis of any mental health condition is particularly difficult and unsettling but perhaps even more so for adolescents and children and the families that make this journey with them. Bipolar disorder can arrive quickly and with terrifying symptoms for some young people. It can come with feelings of extreme anxiety, depression and mania that can include anything from racing thoughts to hallucinations and psychosis. The diagnosis is seldom simple. There is no blood test or CAT scan that can simply and positively identify bipolar disorder. This illness can look like attention deficit hyperactive disorder (ADHD), depression, post-traumatic stress disorder, conduct disorder and even schizophrenia. Typically a diagnosis of bipolar disorder, even in adults, is a "wait and see" process and the initial diagnosis is terrifying for all involved. The diagnosis is critical for the treatment but treatment can't always wait for the diagnosis. Often the effectiveness (or lack thereof) of a medication provides information to confirm or dismiss a diagnosis. It is a very difficult and often lengthy process. I am reliving our own journey as I hear from parents, colleagues and friends who have children that are currently in the midst of an initial diagnosis of this illness. I remember the fear and anguish just hearing the term "bipolar disorder"; trying to make sense of it while not completely believing the diagnosis. My mind was racing, "Not my daughter." This cannot be. I know about bipolar disorder. I teach about it. How could it a) happen to my child, and b) how did we miss it? And...what could we have done to have prevented it? I hear all of this and more from the family members that have shared their own stories with me in the last few weeks. I wrote a previous post, "You need to step back..." sharing my thoughts on how to support someone who has a loved one in the middle of a mental health crisis. Today I would like to offer my thoughts to families who are beginning this "vast journey of ours" as my daughter calls it. It will get better but it is difficult, terrifying, and fills a parent's heart with grief. With care I offer the following thoughts:

If your child or adolescent is hospitalized (once you can take a breath and think straight) meet with the doctors and the care team. Get to know the nurses, hospital assistants, residents, social workers and therapists. Be there as much as you can to learn all you can, be aware and part of any decisions and assure your child that things will get better. If your child is psychotic he or she may say things to you that are completely unnerving and frightening. It is the illness and may have little to do with reality. Don't take it personally. Stay calm (at least in front of your child).

Meet with your own family team. Define "family" as those in the inner circle that can help support your child. Tell the truth. Divide up chores. Take turns being at the hospital or staying with the child. When one member of the family team is ready to crash from exhaustion and worry have a plan for someone else to step in. Assure that the younger children are involved in a way that is age appropriate. Kids know when something is going on and their imaginations are often worse than the reality.

Explain to others in ways that they can understand. Share as much as you feel comfortable sharing but imagine that your child had diabetes and was hospitalized in critical condition from this illness. What would you tell people? You have no reason to be ashamed or embarrassed. I decided to tell the truth from the beginning and, yes, there were awkward silences when someone asked me, "Why is your daughter in the hospital?" and I said she is in a severe depression and is being treated for bipolar disorder.

Ask for help when you need it. Someone needs to contact the school. Someone needs to talk to the insurance company or help sort through the medical paperwork. If there are other children in the home someone needs to assure that they are fed, clothed, loved, comforted, tickled, read to and played with. Sometimes you might need someone to tell others about what is going on because you just can't tell the story one more time or without fear of falling apart forever.

Accept and reject advise as you want and need to do so. Advise comes unsolicited and is sometimes comforting, sometimes helpful and sometimes scares the hell out of you. Often it reminded me of stories mothers tell a newly pregnant woman. Sometimes it becomes "can you top this horrible story" and it does you no good to listen. Practice saying, "I understand that you are trying to help but I really can't listen to any tales of woe or tragedy right now. I need to stay positive."

Be brave, consistent and on top of things with your insurance company. We asked for lots of treatment and care that wasn't readily offered but once we asked for it things fell into place. I cajoled doctors into writing letters of support for things we needed (I was actually the ghost writer on a couple of them at the doctors' request). This included longer time in the hospital, more sessions with a therapist, a different drug (non generic) or a doctor outside of our designated list of providers. Find out if your insurance company has a case manager for critical or chronic illness. Our insurance company did (thank you, Ruth, you are a saint!)! Ruth was a former psychiatric nurse and provided us with so much information and support that ultimately helped our daughter become stable and likely saved the insurance company money. If you do not have insurance meet with the social worker at the hospital and keep asking questions. If something doesn't sound quite right, ask more questions and bring someone with you to help figure it all out.

Let your child's school know what is going on. If this is the first time your child has been hospitalized or newly diagnosed you should ask for a 504 Plan to assure that accommodations will be provided as necessary. If your child misses a lot of school or falls behind in her or his academics you can make a referral for special education assessment. This does NOT mean that your child will have to be pulled out of her class and into a special education room. It does mean that he will have legal protection to assure that services and support are offered to assist him to progress academically and emotionally/socially/behaviorally in school. The school will use the diagnosis from the doctors to document a disability and may do some additional testing as necessary. This does not need to happen right away if your child is not stable but I urge you not to wait too long and do alert the school as soon as possible. That might be a job for someone on the family team!

In a mental health crisis parents aren't thinking about such things as an advanced medical directive but do remember that when a child turns 18 you might still be paying all the bills but you won't have any say in their care or privy to information about their medical treatment. Once your child is stable talk about this and investigate advanced medical care directives in your state. Have this in place by the time your child turns 18.

Find the time to take care of yourself even if it appears to the outside world that you are doing marvelously well. From my own experiences I can honestly say that I waited a little too long before addressing this and it took a toll on my health. I kept up a good front but stress does have a way of eventually reminding you to take care of yourself...when your body gives you a big wake up call. I am so glad to be healthy and centered now but it took some effort.

Finally, every one's experiences are different and we all come from a vastly different place, yet I believe we have something in common. Parents would do anything to heal their child and when you can't it hurts beyond words. I humbly offer hard earned "advice" from our own experiences with bipolar disorder and my training and experience working in the field of special education. It is complicated and frightening and not something that most of us were trained to do. Even for those of us that have knowledge and resources find the world of mental health care for a seriously ill child overwhelming. There are many, many resources available and we have listed some of our "favorites" on our website. I hope that there may a small piece of information that makes things easier for parents whose child is in the midst of a mental health crisis. It will get better. Stay hopeful. I include this picture to remind you to keep a special place and time in your memory ........

The Season: Time for Love

2009-12-04T13:49:00.000-08:00

We are entering that time of year when some of us have a little more room in our hearts and perhaps a little more gratitude for the small things. Daughter Linea, she of the bipolar gremlins, is wrestling with a push-back from this challenge in her life. She is fighting hard against all the symptoms insidiously trying to sneak back into her life while finishing winter quarter of her last year in college. She is working on writing a "senior synthesis", a paper that breaks her heart while she looks back over her last years of college. She is studying for finals, completing all the paperwork for graduation, etc. etc. I drove her to the medical center for a blood draw today so that she didn't have to hassle with either the bus or parking as the area around the center is under massive construction. She was exhausted after a night of terrorizing nightmares and certainly not thrilled about the blood tests that go along with the medications she takes. I drove her back to her apartment and headed to campus for my own set of responsibilities while feeling worried about her and wanting to use my magic mother skills and make everything okay. As I drove her home she pointed out the bundled, bag-laden, elderly homeless guy on the street, a regular in her neighborhood. As I dropped her off I again offered to take her out for coffee or breakfast but she planned to have a bowl of cereal and get ready for her day. But she had no milk. She walked down to her local in-and-out to buy some milk and there was her homeless neighborhood man digging through his pack, trying to find a few pennies. She bought her milk...and some protein bars and water for the old man living on the streets, telling him to save his coins. A large percent of our community members who are homeless are mentally ill. We know how lucky we are to have the resources for health care and that we are able to treat Linea's health condition. Linea was hospitalized with many, many people that were released from the hospital to the streets. She was often overwhelmed by the inequity in care and support as she faced this up close and personal. Today she reminded me that even in our own lives, touched with worry and illness, there are those who manage with much, much less. In this season let's give to someone on the street, someone perhaps living with untreated mental illness. Something as simple as a power bar and a bottle of water, perhaps a hot meal,or time spent volunteering for an afternoon in a shelter. My daughter has taught me not to turn away, not to ignore a person living on the streets. I look, I speak, and acknowledge although I have to admit that it has been easier in the past to ignore a fellow human being as I rushed through my life. It is the season to notice, to give, to love.

Letting Go Yoga Style

2009-12-02T09:08:00.000-08:00

I have been practicing yoga on a somewhat regular basis, even after teaching class until 7:00 p.m. Good for me, finally! I am so tired after working/teaching/writing/advising/talking/ administrating/ all day that I can easily put off getting into my car, driving to the studio, changing clothes and doing the work that is required of me to be in class. But every time I make the effort I leave class feeling SO much better. (I know this is a luxury and one that would be near impossible if I still had small children at home.) I thought I would share something that we did the other night that really struck me as more than just "yoga" but rather a life lesson. Yoga and the meditation involved provides lots of ah-hah moments anyway but this was particularly profound, at least to me. I hope I can properly explain what we did. Starting from a child's pose or balasana (legs tucked under and pointing behind, head forward onto the floor) we then placed a blanket roll between our abdomen and thighs. The leader told us that it would feel "somewhat" uncomfortable, perhaps even slightly painful. This would occur as our abdominal organs were moved into a different space, forcing a release of toxins. Here is the best part! IF we could simply notice the "uncomfortable-ness" but not resist, it would soon subside and we would begin to relax and feel centered. My body was initially very tense and, as our instructor noted, afraid it would be hurt so it was in "protection mode" and staying on high alert. It was so true and quite amazing that as I relaxed, and noticed but didn't fight against the stress, it felt so good. An ANALOGY for life I think. We resist things that we automatically think will hurt us, we tense our bodies and our minds. We can't quite "let go" and trust. The more deliberately we try to release and relax the harder it is to do so but if we just notice our feelings and sit with it, slowly we begin to let go and the pain is released. We feel easier and more centered. This is very hard to do with life but likely, as with yoga, easier with practice.

Happy Birthday, Linea!

2009-11-23T19:31:00.000-08:00

It is time to write about Linea! She was born on Thanksgiving Day, finally, after making us wait through three days of snowstorms, walking miles through the hospital corridors and waiting, and waiting some more for her entrance into the world. In a family of blonde babies, she was a head of dark hair and born ready to dance with long, long legs and music in her soul and on her lips. Her seven and 1/2 year old big sister, Jordan, held Linea moments after her birth and declared her partnershp in mothering this baby. Linea became a headstrong two-year old and one that we suspected might cause us to fear the teen-age years. Not so. Yes, she was determined and strongly goal-oriented, but immensely kind and loving to her family and to the world. She was a thinker, putting pieces together like a game of Uno, like a Brahms concerto, like the workings of the brain. She is still all this and more. Just look at this beautiful picture she sent to me while attending college in Chicago. This girl has taken us all on a journey with her, an unexpected journey, yet one of immense bravery and with such honesty that our lives have been enriched beyond anything we could have possibly considered. Read her blog, http://www.lineajohnson.blogspot.com/ and celebrate another year with our precious daughter. I can't wait to travel forward with you, Linea, and share all that life has to offer! Love, Mom

Sometimes we just need a little comfort....

2009-11-22T16:24:00.000-08:00

I want my binky. I want TWO binkies. I want all my binkies and I want them right now. Give 'em to me!! We have all been there. Too many things going on in our lives and not enough of them on the positive side. Too much anxiety, too many bills to pay, too many sick kids or too much homework. We need some comfort. The vast majority of us can and do provide comfort to everyone else in our lives. We often provide more than is asked of us and sometimes comfort that is not necessary or even wanted. Why can't we do that for ourselves? Eighteen-month old babies know how to get what they need. As well we mostly provide for them and try to comfort them the best that we can. Why not ourselves? I am going to yoga this week and more than once. I am opening the expensive wine and enjoying a glassful by the fire with the dear Husband. I am getting up from my darn-hard writing project at least every 40 minutes and walking outside, even if it is pouring. I look forward to spending 3 days with family over the holiday, not thinking about or doing anything that is work-related. You, too, find your binkies! A blessed and peaceful week to you!

Solemn

2009-11-15T14:36:00.000-08:00

I would say that overall my posts are fairly upbeat and my thoughts as well. This is not the case today. Be prepared for a sad tale.... but there is a message within this tragedy. Have you ever imagined that your child could be hospitalized and that you would not have have input into her care? If your "child" is 18 years old this may very well be the case. There are so many things that can go wrong when someone is hospitalized and it seems much more likely in the mental health arena. I have written in previous posts about my friend whose daughter is currently hospitalized for a severe mental health condition. She is in "no-(wo)man's land". She is not yet out of her teens but considered an "adult" in the legal world. She is too ill to give consent for her care, and now is spending her time in a horrifying limbo of health care hell. She has been in three facilities and is now at a state mental hospital. She is too ill to give consent for the initial recommended treatment and her parents are prohibited to do so since she is no longer 17 or younger.

How did this happen? This high school girl was struggling with a tentatively diagnosed illness but suddenly things took a turn for the worse as she spiraled into a psychosis and was hospitalized. She was unable to sign the paperwork allowing her parents into the system of her care. She was assigned a guardian ad litem. Doctors could not share information with her parents without breaking the HIPAA laws. The parents are seeking guardianship but this is taking too much time. The parents (a teacher and medical doctor) are seeking custody of their daughter; custody so they can speak with the doctors, make decisions and move thngs along as we would with any health condition. Meanwhile they wait in agony.

Their daughter's mind betrays her. She is lost and unable to find her way back to any semblance of normalcy. Her parents weep. No one knew that this insidious illness was coming as quickly as it did. It moved too fast to complete all the legal requirements necessary for the parents to make decisions for their daughter's care. It moved to fast for them to recognize that they needed to have an advanced directive in place. If these two highly educated parents cannot make things happen, what about parents that are unaware of this possibility? Laws were passed back in 1967 by then California Governor Ronald Regan, setting a national precedent of required judicial hearings for extended involuntary commitment and the prohibition of forced medication, among other mandates. I get this. We have moved greatly and thankfully from forced commitment and treatment but where-oh-where is common sense humanity?

There is no answer today for this horrible situation. The parents are struggling to keep themselves from falling apart while doing what they must to support their child. I urge parents to consider having an advance directive for health care in place by the time a child turns 18. The consequences can be devasting for everyone involved if this is not in place. Yes, it may be unlikely that your child will have a major psychotic break at the end of their teenage years but this time period is when these insidious mental health illnesses show up and sometimes quickly. As well, consider this for every member of your family. Linea and I heard Kay Redfield Jamison recently speaking about her new book, Nothing was the Same, and author of, The Unquiet Mind. She is a professor in the psychiatric department and co-director of the mood clinic at John Hopkins and a leader in the research and treatment of mental health conditions. She has bipolar disorder and spoke of her own advance directive for care. As part of my professional responsibility I will include this information in my classes and assure that our future school psychologists, school counselors and teachers are aware that student become independent from their parents at age 18.

I spoke with my friend this morning and she not only again gave me permission but wanted me to share her story. She is not ashamed. She is a terrified mother. Take care, good friend. Let us all send prayers and good wishes to her family. My heart breaks for her and her family.

(Solemn and Triumphant, Painting by Jordan Swain )

http://www.jordanswain.com/)

Where's Sister?

2009-11-13T10:05:00.000-08:00

It is time to write about sister Jordan! I wanted to give the "Dad-post" the spotlight for a few days before bumping him down for the "Sister-post". While waiting to post this over the last few days I noted that a number of blogs were posing the question of the impact on siblings of kids with disabilities. I guess we were all thinking along the same line. Hopefully Jordan will comment on this and let us know what SHE thinks about Mom's comments! She is invited to guest blog!

Jordan is Linea's big sister, seven years, five months and thirteen days older than her and about five inches shorter. Jordan has always been a big sister to Linea as well as practicing her mothering skills on her from the time Linea was born. Jordan led Linea through her childhood with care and love and her own unique brand of imagination. Which, as a budding artist, was considerable (check out her art at http://www.jordanswain.com/). Jordan was the chief instigator and designer of the Phantom of the Opera birthday party when Linea turned nine. The party was complete with a Phantom cake that Jordan made, decorations, music and all the materials (under Jordan's directorship) for each child to make a Phantom mask. The girls have a remarkably loving relationship. Linea loved her sister so much that she and her best friend, Kim, interviewed one of Jordan's first dates. In trench coats and writing on their clipboards, the two girls quizzed the poor kid on everything from his favorite food, football team, and pets to when and how he would bring Jordan home. Jordan and Linea hardly ever had arguments or competitions or any hints of jealousy between them. The only time there was any real friction was when Jordan was in the last months of her high school days and preparing to go off to college. Linea wanted to go with Jordan everywhere she went. She knew Jordan's time at home was short. Jordan was trying her hardest to prepare to fly away from the nest and Linea was trying her hardest to keep her home.

They have remained incredibly close and as a mom it is so heartwarming to see that they are best friends and will be there for each other no matter what. So how did Jordan react to Linea's illness? These two girls have very different temperaments as anyone who knows both of them can attest (understatement?). Jordan said at one point in the beginning of all of this, "I don't understand why Linea is so sad. I just get mad!" When Linea was finally hospitalized Jordan was there, continuing to fight for her sister. I had to remove Jordan from the psych unit when she wanted to take on the nurse that wouldn't let Linea leave for a walk outside. She finally left with me pulling her arm, but proclaiming that the "nurse was a b*%$h." Once out through the locked doors and into the hallway of the hospital Jordan burst into tears because she was so afraid for her baby sister. Jordan is a tough, beautiful and feisty woman but barely below the surface she is incredibly sensitive and vulnerable (just don't tell her that!). One of her strongest traits is loyalty. I can think of nothing that would fray her loyalty to her sister. Jordan's love for her sister is kinda like a mom's. I don't see any jealousy or resentment of any of the support or care that Linea receives as she works her way through her diagnosis and treatment. I only see great protectiveness and love. Jordan never shies away from the diagnosis, the treatment or the acceptance of her sister. She also has so much optimism and belief in her future that even in dark times she buoys us all up and forward. Jordan, you are our hero.

Where's Dad?

2009-11-08T21:02:00.000-08:00

Those of you that have read my blog or heard Linea and I speak around the country about our experiences with her bipolar disorder may wonder how her Dad is doing with all of this. A lot of dads fix things. Linea's dad wanted desperately to fix anything that was wrong with his daughter. He was always the one that raced to the airport and flew across the country when she was her sickest. He was the one that brought her home from college when she crashed into a life-threatening depression. He was the one that flew back and packed up her life and brought it home again. He was the one that told me, over and over again and even when he might have been unsure himself, "It will be okay." Linea wrote in her journal after a particularly hard time that she remembered when her Dad had glued her broken Tinkerbelle figurine back together and she said, "I need him to repair me. I am broken." He tried so hard to fix everything and when life was finally a little more stable he wondered why we would want to talk about the not-so-stable times all over again. But he continues to support us and he is proud of the strength of his daughter. She is putting herself back together again. Meanwhile he is out in a Seattle down-pour trying to keep the gutters open and the flood from coming in the back door. Staying on guard, fixing our lives. Thanks, honey!

2009-11-04T07:53:00.000-08:00

The innocence and wonder of a new-born simply takes one's breath away. We hold our new babies and wish and pray for a life-time of health and happiness for these wee and fragile beings. Keep the pain and hurt away! Yet, we can't. The first ear-splitting hysterical cries of hunger remind us of the impact of this tiny life on our own. Soon there are cries of irritation, two-year old tantrums, pouts, and eventually maddening teen-age silence and unpredictable moods. Mixed in are larger than equal parts of joy and crazy-funny-silliness and almost more love than a parent's heart can hold. While life is never easy there are some children that just have more than their share of struggles and their families along with them. I have been privy to tales of sorrow for many years from my position as an educator. While sharing our own writing and experiences across the country, my daughter and I have heard heart-breaking stories of children and families struggling with mental health conditions as well as all other disabilities. There is no magic to ease the heart. Given that this blog is an "inside meandering" of my thoughts I guess that is what I am doing this early morning. No answers to all the pain we share with our children. But is there exceptional joy when you experience those times when things are finally or momentarily better? When a child is happy? Is there less living on auto-pilot when you known this pain and then you are granted times of grace? Just a thought.....
(photo by Jordan, beautiful grandson)

Travelling with Linea

2009-11-01T18:09:00.000-08:00

I have been in Savannah, Georgia. presenting with daughter Linea. We were at a conference with a theme of preparing students with disabilities for life after high school. Linea and I presented on bipolar disorder and information and thoughts on supporting young people with mental health disorders. I have friends all over the country and many of them were at this conference. Linea was completely amazing and touched everyone in the audience. I am never worried about her when we speak at events but it felt a little different having friends in the audience. Particularly friends that had been with me through the times that she was so sick. It really hit me how far we have come since just a few short years ago right before she was hospitalized and we were all together in Portland, Oregon. Now she is with them in a professional capacity as well as developing personal friendships. Life has many twists and turns. Jane and Deanne and Karen and many more friends from all over the country supported me and Linea through some very tough times. It was extra special to spend time with them and Linea just having fun together and learning from each other. I am so grateful to have such great friends...and for a daughter that is able to offer so much to others. Thank you! And, P.S. I am writing this from an airplane somewhere over Tennesee as we wing our way back to Seattle!

Apple Cheeks

2009-10-24T13:09:00.000-07:00

Aren't 20 month old's just the cutest things ever?! A grandson provides a window into a world that we mothers quickly forget once our babies are off into the world. Every moment is precious, hilarious, completely lovely and sometimes heartbreaking. But mostly full of utter joy! Remembering my babies turning into toddlers and moving on to grade school, high school and college makes my head swim. Where did it all go? You think you will never forget the delight of simply watching your child with his first armful of apples on a beautiful fall day. And in the midst of work and running here and there and scrambling to meet all the tasks that come with raising children and keeping a roof over their heads we forget those blissful moments. My wish to you is to simply take a minute or two and watch a little human explore his or her first fall days. Precious!

You need to step back...?

2009-10-17T08:56:00.000-07:00

I have been talking with a new friend of mine whose daughter is in the midst of a mental health crisis. It is somewhat unusual in most people's circle of friends to know someone who has a child in a lock-down psychiatric facility and who was placed there after spiraling into a psychotic meltdown. But, it happens and it happens to the best of families, moms, dads, sisters and brothers. Having gone through this myself I know that friends and acquaintances generally want to help. They want to offer the right words to support you in your panic and fear of the unknown. My new friend reminded me of what was helpful.....and what was not helpful.

Helpful:

Hope, hope and mostly, optimistic hope.

Things to say:

It will get better. There is excellent treatment available. It can take time and what can I do for you while it is taking time? Let me run errands, make a meal, buy you a coffee, pick up your children/dry-cleaning/paycheck and deposit it for you so that YOU can spend time with your sick child.

Not-so-helpful:

Run away, change the subject, interrupt to change the subject, look horrified.

Not-so-helpful things to say:

Oh-my-gawd, what are you going to do???? (not kidding, this has been said). Oh dear, this is so horrible, what will ever become of her/him? Let me tell you about my friend who's daughter/son had (fill in the most awful story you can imagine) and then add (and she/he is now living on the streets, completely destitute, fried on drugs and the family can do NOTHING)!

The last not-so-helpful thing to say deserves a few comments. "You should try to give (your son/daughter) space. You are too tied up in all of this. You need to back away some." Well, please change the crisis from a mental health crisis to a medical crisis. Your child has just been hit by a car and is in the ER and then in intensive care. What parent is ever advised to "give them space"? Friends and family rally around so that the parents can be there, doing everything they can to support the care team. Our friends and family offered that to us and no one ever suggested that we should lessen our time and effort to support our daughter. Thank you, family and friends! The above and not-so-help comments have been said to my friend. Somewhere in these comments, even if meant to be helpful, lies the subliminal message, "Could your parenting style have caused this?" Parents question themselves enough as it is in the midst of these crises. We need no nudges to consider our own feelings of guilt and fear.

So, dear friend, your daughter will get better. You will have some times in the near future when you can breathe again. There is hope. Your support and advocacy and sometimes even down right pushiness is critical for her recovery. Tell your friends what they can do for you even if it is just to listen. Stay the course. I wish you peace.

Salome Painting by Jordan Swain (http://www.jordanswain.com/)

Do something for yourself today!

2009-10-13T20:52:00.000-07:00

It is almost the week-end and I have been working non-stop. The cold and flu season is sneaking up on us as it always does this time of year. It coincides with the university quarter system which means that we are halfway through and students are stressing out over mid-terms, term projects and papers, late nights and early mornings. I am proposing that any of you that read this post join me for a "mid-term" break of at least one hour today, Friday (don't wait until Saturday!) to take care of yourself. I am remembering my trip to Nicaragua. The picture was taken at the experimental farm outside of Matagalpa. The land had been completely stripped by poor farming methods. The amazing Nicaraguans working here have slowly and steadily returned the land to its glory. The jungle, the plants and even the howler monkeys returned to their home. It takes nurturning. A little bit every day. Go have tea in a coffee shop with a good book. Take a walk (under an umbrella if you are in Seattle) and look at the colors on the trees. Be alone. Don't talk. Pet your dog. Go home for lunch and soak in the tub for an hour. If you live in the city go to the nearest park and people watch. If you live in the country go outdoors and sit quietly until you notice all the life around you. Turn off your phone, don't read your email, close out all the requests and complaints and whines coming at you. If you are home with babies, do not clean/make dinner/pick up toys/ or run errands with baby in the car seat. Take just one hour and breathe. We all need to refresh ourselves...and keep breathing after we leave our "hour". Join me and if you take this challenge, tell me what you did for yourself!

New York City

2009-10-06T20:26:00.000-07:00

Wow! New York City is an awesome place. Yes, true, I have never been there and was thoroughly immersed in the adjectives that everyone uses to describe this city. Huge, busy, crazy (cab drivers), crowded, anything you could want in food, shopping, sightseeing, ambience, culture (or lack thereof), ethnicity, music, etc. etc. etc. I loved it. Although this was a short visit the people that we had contact with were helpful and kind and certainly nothing like the stereotype of the New Yorker. (Speaking of stereotypes not everyone in Seattle necessarily wears Birkenstocks, drinks Starbucks and/or holds in their emotions). Anyway, I digress. We went to NYC to meet with our agent. Linea and I have written a book together and we are in the throes of getting this published (http://www.lineacinda.com/). Another step forward in this effort!

Less than five years ago we all supported Linea's dream to finish a degree in music performance and end up in New York. "Waiting tables while I tried to get music gigs," said Linea. Then she spiraled and crashed into a bone breaking depression that involved hospitalizations, medications, treatments beyond our comprehension and a diagnosis of bipolar disorder. With a big, wide and unpredictable detour she did not end up in New York in the music world. But she was in New York as we spent time with our agent in her office on Union Square discussing the publication of our book. Life is so mind boggling at times.

Dear Daughters...

2009-08-17T20:30:00.000-07:00

I write this letter to you, my two daughters, hoping to set you loose from the grip of trying to do it all. One of you has finished a bachelor's degree and one of you is getting close. Both of you are struggling with the next steps. Big steps, high steps, fast steps. Overachievers, both of you. I wonder where you learned this? Let me set you free from any expectations that you may carry deep in your souls. Yes, I appeared to have set the bar incredibly high for you. I worked and worked, adding degrees and experiences while, I think, mothering you with powerful love and support. But I also lost so much precious time to just "be". I spent too much time adding additional tasks and responsibilities to my own list, somehow thinking that the world would stay safe if I just worked hard enough. Don't fall for the enticement of filling every minute of every day with another step towards....what? Read this carefully, take what you want and need and feel powerful to reject anything else. Save time for yourself. Give those you love the gift of time. Listen carefully to yourself. Do work that is honest and important to your life but adds some small benefit to the world or others. I can tell you that there are more important things in life than your job or your title. You both knew that at one time but it gets harder to remember as everyone around you seems to be scrambling for the top. It is okay to let go of the expectations that you think others have for you. Be happy. Be secure. Stay kind and sometimes small and silent, listening to your own trustworthy voice. Love. Mom

Home from Spain

2009-07-26T16:15:00.000-07:00

I have been away from this blog for too long! A month...how could it be? After finishing a busy spring quarter and teaching a quick summer session I was off to Spain to present at a conference. It was an incredible trip. In addition to meeting people from other universities and programs I had the opportunity to spend time in Madrid and Alicante. Both were fantastic. Where can I begin? The beauty, the music, the food, and the rhythm of life in Espana! It took a few days to settle into the late lunches and even later dinners. It took awhile to slow down in the afternoons and early evenings before going out to join the families and friends that meet and talk and eat and drink, sitting at the tables in the pedestrian streets, beside fountains and in the plazas. But soon it became ever so pleasant. A different pace than life in Seattle. So much to learn from this country of close families and friends, deep faith and a community spirit that is apparent as one walks the streets and alleys, providing a brief time to peek into another countries' lives. More to come!

Sorrow of the Classroom

2009-06-24T19:55:00.000-07:00

Recently I "tested" a man to determine his reading, writing, math and cognitive abilities. I don't do this often anymore but when I do I am always deeply touched. Never more so than the recent testing of "Almondo". This 30-something year old man from an inner city in a very large state, from the slums, poverty and crime, can't read. Or write. Yet he is of at least average intelligence. He was identified in 3rd grade as having learning disabilities but his head-of-household-mom couldn't "afford to pay" for him to attend a school that could provide him services. Well, that is what he and his mom understood anyway. Of course this was not legal even 20 plus years ago but for a mom that doesn't speak English and a dirt poor 8-year old that is the way it was. This man was "moved on" (his words) from grade to grade without ever learning to read. Special education IEPs followed him but to no avail. He dropped out at age 14, got himself a fake ID that said he was 18, and went to work packing hamburger for the next 6 years. Finally got himself a "good job" running a lift truck in a state up north of his birth city and state. Part of the job was pulling garbage and cleaning up after everyone else. He severely tore his bicep, along with a shoulder injury and various other major bodily injuries. He was afraid to tell anyone because he thought he would lose his job for getting hurt. Now he can't use his left and dominate arm and... he still can't read or write. He has waited two years for the local community center to find a volunteer to teach him to read. He had a tutor for a week but she quit just when he was learning his vowels. He cried (with embarrassment and apologies) when he told me his daughter also has learning disabilities and can hardly read and he can't help her...because he can't read anything. He didn't know how to get the schools to help her. I wanted to cry myself. Teachers do tremendous work and I teach men and women in graduate programs that have done everything but taken a vow to not leave any students behind. What happened with Almondo? Who didn't notice? Why do over half of our children with learning disabilities drop out of high school? How can we stop this cycle? Almondo can't read. Almondo has lived on the teetering edge of poverty for years and now with an injury that prevents him from doing physical labor he has fallen deep into the pit. His children had so many difficulties in school. His son dropped out. His daughter barely finished but only because she didn't "cause trouble" but she still can't read well enough to get a job that provides a quality of life that we all want for our children. Almondo tried to hide his tears....as did I.

Tangled and lovely webs

2009-05-31T16:55:00.001-07:00

It has been quiet on the blog front for both Linea and me. It is the end of the quarter (as well as the school year) and always an incredibly busy time. I think we are both overloaded with work and projects and deadlines. I will let Linea tell you about her overloads if she wants to...I am just trying to remember that sacred space within me that I need to keep open and not let fill with the trivia of everyday life. In addition to teaching we have presented at a conference in Seattle and once again we were touched by someone that attended. "Don't forget to remind people that substance abuse is often a symptom of mental health conditions in adolescents and not something for which they should be punished." This passionate plea came from a mother who had lost her son to suicide a very short time ago. I am continuously reminded that every person is connected somehow to mental health conditions.

So here is a story of our closeness to each other. I see us all connected through a web of vines like those blossoming on my garage. I will try to write this in the least complicated way possible. My mom is an artist and has painted for many years. A woman bought a painting from my mom sometime in the late 1960's while she and my dad were living in another city from where they now live. This woman ended up living in the same city (40 some miles from where my parents now live) as my sister's sister in-law. Yes, it is tangled! I think it would make it easier if I assigned a pretend name to the woman-that-bought-the-painting. Grace. Let's call her Grace. It will soon fit the story. So Sister's sister-in-law somehow let Grace know that the artist of the unsigned painting was in fact living close and well within reach. Grace always wanted the painting signed and contacted Mom to see if she would do so. My parents were actually out of town with us, while Linea and I presented at the conference in Honolulu. Finally Mom returns Grace's message and it is decided that Grace will come to my parents' home with the painting and have it signed. Grace is thrilled as she has always loved the painting. My mom is a little worried because she doesn't remember the painting and hopes it won't be something she doesn't like after all these years. Grace shows up, Mom is okay with the painting and signs it. Even though this is a strange enough coincidence, as they talk a connection is made beyond the painting. As they discuss Mom's trip to Hawaii she shares that Linea and I presented about bipolar disorder at the conference. Grace revealed that she has close family members with bipolar disorder. The two woman have a conversation that I would imagine doesn't just happen when two people meet for the first time. They share their stories and common experiences. Mom shares our website. Both of their worlds have expanded a little bit. They talk some more and Mom finds out that one of Grace's loved ones will be in Spain this summer the same time that I will be there. It wouldn't surprise me if we meet on the train travelling out of Madrid and end up in the same hotel on the Mediterranean! We are truly all connected.

Mental Health and You

2009-05-17T14:41:00.000-07:00

My daughter Linea and I just presented at the International Pacific Rim Conference on Disabilities in Honolulu, Hawaii. Yes, I know. Someone has to do it! Although it was certainly different weather from what we experienced at the Wisconsin State conference in January (!) when we presented there was a well-recognized familiarity in our exchange with the audience and our contacts after presenting. NAMI (National Institute on Mental Illness) tells us that one in every four families deals with mental illness and one in seventeen people live with a serious illness including bipolar disorder and schizophrenia.

So it isn't surprising when we hear from people in our audience about their own struggles with mental illness. These people are almost always professionals, psychologists, social workers, teachers, and counselors. Yet they share their fears of divulging their stories, let alone their needs, to their colleagues and employers. They send emails and notes telling us that they are so glad we are brave enough to talk about "it". They tell us they have kept silent for years for fear of misunderstanding or rejection because of their illness. If our audience of professionals that work in the field of education and mental health are afraid to share their story how much more difficult is it for someone that may not understand their own illness or have people around them that don't even know what a diagnosis or treatment plan might mean? It is heartbreaking to hear the stories of fear and hopeless- and helpless-ness. We have a long way to go, don't we?

Invisible City (Jordan Swain)

The Crying Cup

2009-04-26T14:24:00.000-07:00

This beautiful cup is known as the "crying cup" in my family. It was given to me many years ago as a gift from my sister. I kept it in its original box, wrapped away in delicate pink tissue paper. It stayed there for a number of years until Jordan came home from school one day with a flurry of hurt feelings and tears. She may have been in the first or second grade. I was making tea so I pulled out the beautiful bone china cup and served Jordan from it. She was so very careful and felt so important sipping from this special cup. Jordan and then Linea anointed it with their tears over the next twenty years. Slowly the cup was awarded the distinction as the crying cup. It was used to soothe hurt feelings, broken hearts, missed opportunities and lost pets. Yet is mostly remembered for the closeness of mother and daughters, the eventual smiles, laughs and giggles, and the ceremony of bringing out the crying cup.

Blackbird

2009-04-20T21:32:00.000-07:00

It has been almost three years since my youngest daughter was first diagnosed with bipolar disorder. It may have been stealthily moving closer over the previous few years but none of us recognized it as bipolar, that crazy-making illness with phases of depression and mania and symptoms of which I was not yet aware. The mind boggling severity of the depression was a major piece of the puzzle in the diagnosis. The mania took a little more time before it became

something mean enough to also cause hospitalizations. As Linea and I have shared her story and mine, we have been moved to tears by the people that have told us that they, too, have similar struggles and fears, tragedies and hopefulness. I am particularly touched by the mothers. We are a club of sisters that know the bone-shaking, middle of the night terror, constant alertness and worry of having a child on the edge of an unknown precipice. As my mom says, "Sometimes all you can do is make it through one more minute, not just one more hour or one more day."

Sometimes the movement forward is a single minute at a time. Three years past the terror of an unknown illness taking over my daughter's life and changing all that we thought we knew...life is better. Life is stable as Linea stays within the parameters of a healthy life, sometimes up, sometimes down and sometimes bobbing on the edges but she is managing and in control of her own life. It would be easier to try and forget those years of anguish and worry and pain. But I think it is important to never forget. Never forget the closeness and the love of family as we held on to each other, we five (Linea, Linea's mom, dad, sister and brother-in-law), her grandparents, aunts and uncles, cousins and friends. Things were clearly in perspective from most important to least important when life was falling apart. Little things mattered. A sunny day on the lawn of Harborview Medical Center. The quiet sanctuary at St. James Cathedral. The song Blackbird played to me in a psych unit on Mother's Day. And finally, a day on the beach in Mazatlan. I don't want to forget. I am thankful.

2009-04-19T20:19:00.000-07:00

As part of my trip to Nicaragua we were asked to write a reflection paper. I will confess to my grad students that I put it off until the day before it was due. Bad idea but like many of my students, I managed to get it done. Here is a snippet of what I wrote.....

Thank you for providing the opportunity to participate in a trip and an experience far beyond what I ever expected when I arrived at this university. It was a life-changing occasion and one that I strongly believe will continue to reverberate in my soul for years to come. I was humbled by all that I saw, heard, tasted, touched and smelled. I write this with Carlos Mejia Godoy’s folk mass, Misa Campesina Nicaraguense, blasting throughout my house. I ate rice and beans for breakfast this morning with a cup of coffee purchased from CECOCFEN, a coffee co-op of peasant farmers. This with the hope of bringing back memories of time in Nicaragua and turn my feelings and thoughts into words. Yet it is extremely difficult to write a “reflection” … me, of many words, both spoken and written.

I hold joy and pain for the people of Nicaragua simultaneously in my heart. I see the face of the tiny child playing with a plastic hanger in the center of Managua with no adults nearby to care for him but I also hear his laughter as he and his brother chase each other around the center courtyard. I remember the young girl sipping coffee at the farm while her mother and her friends talked to us about their union work. She looks wise beyond her age. She, too, will lead.

What can I do to assist in the efforts of the Nicaraguan people? For each person I pray for health, family to love and support, food to sustain, education, and meaningful work. How can I help? I do not know but I have learned a little something about aid to other countries and provided to people at the local level. I heard a woman say, “When aid comes with strings it takes away some of our soul.” How can I help? I am percolating. I do know that my life has been vastly changed by this experience. It has affected my teaching, my relationship with my colleagues and with my family and friends. Yet I still cannot talk about the “trip” with any sense of clarity.

I ramble. My mind rambles. I waited too long to write this because I did not know what to say, likely for the first time in my life. Words are my business. My faith in man and woman-kind has deepened. As I wrote previously, I am humbled.

Lucky charms, amulets, and talisman

2009-04-07T19:20:00.000-07:00

Given this blog has "meandering" in the title, I guess I will.
Meander from my thoughts of Nicaragua for a day or two and discuss lucky charms.

Do you have a ritual to bring you luck or keep you safe? Here are a few to try courtesy of my children and my own childhood.

While going through tunnels: Make a wish while holding your breath and keeping your feet off the floor of the car.

Whisper, "Parking goddess lift your face and find me a close parking space."

Burn green candles for money.

When the digital clock reads 11:11... Make a silent wish.

When you see a small pony, yell, "Eee-oooo-hypogus" (WHAT?).

Worry about what can go wrong hard enough and maybe it won't....oh-oh, that one is serious. It was brought to my attention via my daughter's psychologist that I may use this technique as my own personal amulet. Hmm, not very productive, do you think? Will it keep my children safe? My family? Illness and accidents can strike without any warning or we can keep guard and worry. Illnesses that strike the brain can be sneaky. But I am trying something new. Trusting my daughters to stay as well and healthy as possible and to ask me for help if they need me. That is the talisman I am currently trying on for size. If there happens to be any readers out there...do you have a lucky charm?

Nicaragua: Fenced In

2009-04-01T17:00:00.000-07:00

Managua is fenced in. Guards are posted. Gates are closed and locked. Children play behind fences topped with barbed wire. The poor cobble together metal siding; the middle erects bars and wire; the rich hire workers to build tall concrete, brick and artistic walls with lethal spikes placed carefully on high. I felt confined.

Life went on for the people that lived there. I witnessed a

spirit that would not stay behind walls and fences and wire.

Thank you, Nicaragua, Humbly yours.....

2009-03-29T20:23:00.000-07:00

I just returned from a week in Nicaragua on an immersion trip with colleagues from my university. It was a powerful experience and one that is not yet finalized within me. I was overwhelmed and humbled by the laughter, openness, spirituality and wisdom of the people living in and around Managua, Matagalpa, and Masaya. They gave of their precious time to fourteen professors and administrators from Seattle. I have much to think about as I remember the experiences I had. At this point I have just returned from a long trip, little sleep, hot, hot weather, and what, on the surface, appears to be vast differences between a small country in Central America and a city in the US. But over the next few weeks as I sort through my notes and journal, photos and videos, I will return to this journey again and again. Tonight I am too weary and spring quarter begins tomorrow so I will be brief with a few ramblings. We can't go into countries such as Nicaragua (the second poorest country in the Western Hemisphere) and save anyone. We are not the experts. The poorest women from Matagalpa joined together to form the Union of Organized Women of Yasica Sur (UMOYS). Over twenty women walked to meet with us, many walking for more than an hour during the hottest part of the day. They generously shared their story. More than 300 women strong just in the Yasica Sur basin area, these women talked of their work to better the lives of women and families by assessing the needs of their communities. They need roofs to keep the rain out, medical care, shoes for their children so they can attend school, peace in the home. They talked with us for over an hour, sharing how they have built a strong and sustainable organization. A woman said that, because of her work with the UMOYS, "I now feel free, liberated. I did not know what was out there. We are poor. But now I can talk to anyone." I will listen.

Celebrations

2009-03-17T08:26:00.001-07:00

It is the end of the quarter at my university and life has been extremely busy. I was out in the field (schools that is!) observing my grad students at their practicum sites. It is so fun and makes it very clear why I love this field so much. The KIDS!!! I have dedicated, awesome grad students that are teaching KIDS (children and young people with disabilities). These kids are so amazing, brave, funny and endearing. I will give each of them a name as I tell their story but of course you know it is not their real names!

Carrie is a middle school student that cannot speak in school. She is able to speak to her family but not her teachers or peers. She listens, she writes, she works in groups but she does not talk. Her teacher (my student) is completely supportive and accepting as she communicates with Carrie and carefully puts her with other students that treat her with respect. Carrie comes to school to learn; the school is helping her and waiting patiently for the day that she might share her thoughts with her voice. But, if not, she continues to receive a great education.

J is a thirteen years old and struggles to write at the 2nd or sometimes 3rd grade level. There is nothing wrong with his ability to learn; he has a disability in written language. The students write in their journals every morning before beginning their lesson. My grad student was amazed that J had increased his writing from one or two sentences to an entire page. She asked if he was willing to share his writing with the small group of students. He said he would and haltingly read his journal, describing his fear as he went out with the garbage before coming to school and found that his families' car had been broken into and the stereo torn out. He read how he ran back into his house to tell his parents and that they did not believe him at first. He retold the sad tale of his morning ... reading his own writing. It was important to him and relevant to his life. The teacher gave him the respect and support that he needed to find his own words on paper.

Nate is also in middle school. A clumsy, crazy and unique time of life for a child moving to adolescence and on to adulthood. My grad student has a class of unique and wonderful students with a range of severe to more severe disabilities. She manages a crew of paraprofessionals that teach and care for these children with respect and appreciation of their own individual stories. I observed "award time" where my student announced three or four awards for her students that had done exceptional work ....like making it to classes on time, sharing space with other students; seemingly small accomplishments but huge to the individual kid. Nate's name was announced and he went mad with joy. He leaped into the air and hugged each teacher in the room (he stood in front of me with a huge grin and debated whether to hug me or not, he didn't!) and then ran in ecstatic circles waving his small piece of paper in the air. Someone watching through the window would have thought he had just won American Idol. It was wonderful and life-affirming to witness his happiness for his recognition for doing something small.

If you know a special education teacher tell them they are doing a great job. If you know a child or young person in special education find time to share their accomplishments. Each of the students that I saw in the schools will contribute to our society in so many ways. Work, school, friendship, inspiration, and sometimes a nudge to others to take joy in the small stuff.

Just a cool picture taken on the Mississippi River.....

Hong Kong and Post Offices

2009-02-23T15:00:00.000-08:00

I was lucky enough to be invited to speak at an international conference on special education in Hong Kong. It was amazing, enlightening, entertaining, and thought-provoking. Although the picture with me under the umbrella does not do justice to the crowds of people, yes, it was hugely crowded. There were people everywhere, in every nook and cranny, every street and side street and scrunched into every mode of transportation. Even without my red umbrella I stood out as a tall, blonde woman from the USA. Small children turned to stare at me with wonder.

It is absolutely astonishing to me how our world has grown smaller and smaller. Just as small children turned at me and stared, I did the same thing at the age of three. I spent my first twelve years in small towns in eastern Washington. I had not seen a person with dark skin before that tender age. I ran around the corner at a post-office and stopped and stared, completely astonished. The woman kindly allowed me to inspect her as she laughed at (with?) my horribly embarrassed mother. From that very small life I led at three I became, in Hong Kong, subject to the same scrutiny from children (and some adults) that had never seen a white, blonde woman towering over them at 5'9 1/2"! Living in Seattle and most other places in the US provides the wonderfully rich opportunity to meet, talk to, work with and do business with many different people and cultures. Recently I stood in the line at the post office and while whistling away ten minutes of wait time I saw and heard people from all around the world. China, Japan, Russia, India, Indonesia, Africa and all the smaller and discrete cultures in between. This was not the post office that I experienced at age 3. I am so lucky to not only have different ethnicities, cultures and worlds come to me but I can go to them. I did not travel out of the country until I was an adult ...and with children. I listen to my own children discuss their possible travels to far away lands and I wonder if we all realize how fortunate we are to have such opportunities. I am so curious about the world. I don't know that I have enough time to go everywhere I want but I need to spend more time listening and learning from the people that are in my own post office. Don't you just want to sit down with the man on the ferry below and have tea? Ask him about his travels? His first post office encounter? Who does he see in his post office now? Any tall, blond women from the US?

How do you write?

2009-02-18T19:22:00.000-08:00

Procrastination is a type of behavior which is characterized by deferment of actions or tasks to a later time. Psychologists often cite procrastination as a mechanism for coping with the anxiety associated with starting or completing any task or decision. [1] Psychology researchers also have three criteria they use to categorize procrastination. For a behavior to be classified as procrastination, it must be counterproductive, needless, and delaying.[2] (Wikipedia)

Counterproductive, needless and delaying. ARGH. Do you procrastinate when you have big task ahead of you? Writing is a task that finds me in either overdrive or stalled...procrastinating. I have huge amounts of writing to do right now. I am writing 1) a book; 2) an article on teachers, mental health conditions and helping adolescents; 3) an article on life after high school for students with emotional and behavioral disorders; 4) a very boring article for everyone but two other professors in the world on conducting research on post-school outcomes (don't ask); and 5) a really interesting piece with daughter Linea about US (yes, self-centered but fun!). Oh, and I am overdue on about three huge reports...So, what do I do? I am good at organizing my office(s), both work and home, so that I am in a lovely and comfortable environment where my creative juices feel welcome. I make excellent tea, warming the teapot just so and steeping for at least 5 minutes. I stop and look whenever the sun comes out. I answer phone calls from my family. I spend time walking from one end of the house to the other to get a cracker and a piece of cheese. I nibble. I read the acknowledgements in the back of the three books I am currently reading. I WRITE ON MY BLOG.

But, somehow the thoughts that need to go from my brain to my fingers to the screen and on to the paper flutter and turn and eventually settle where they are supposed to. I forget things while "procrastinating" like my keys, my phone, my teeth cleaning appointment. Which, by the way, costs extra $ and is punishable by a three month wait for another opening. But the contemplation sorts and sifts through the ruminating and the writing comes, finally, in long and steady doses. I sit in pajamas (home office only) and write and write and write and I am lost in a space that finally makes sense. Procrastination may be Delaying but perhaps not Counterproductive and Needless. How do you write?

Mothers and Fathers and All Things Similiar

2009-02-16T15:13:00.000-08:00

My daughters are young women now but always in my care. Mothers and fathers and those that do the work of parents have a secret. Our lives change completely when we became responsible for a small person's life in all its intricacies. When my daughter Jordan and her husband had our first and only grandson I knew that shortly after his birth she would be knocked over by the power of love for one's child. This overwhelming love is quickly followed by the dark side of that incredible joy. Can I keep this child safe? What would happen to our world if something happened to this child? We parents carry this unspoken, unacknowledged backpack with us as long as we are parents. I spent the week-end with my own wonderful parents. Even when I worry about their health they never seem to lessen their own love and concern about mine. In a loving family this becomes intricate layers at best. When our daughter Linea was so sick I knew that my parents worried about her as much as they did about me. And now, I understand.

When you become a first time mother suddenly you realize how much your own parents love you. The same happens when you become a grandmother. I love that baby boy crazily and I also know the power that he has over my daughter's life. We could simply love and fret ourselves to pieces, couldn't we? I know that there are children out there that do not have the generations of love and care that my children (and I hope most children) do. In my family the four grandchildren and one great-grandchild has parents and grandparents and aunts and uncles and great-aunts and great-uncles all in the circle ready and willing to offer care and support. With the love comes the responsibility and the vulnerability of loving a child. It is so much easier when you have other family to help with this. I hope that every parent has this support, during the joyous times and particularly during the frightening times. It makes it so much easier.

Place of Peace

2009-02-03T11:56:00.000-08:00

Occasionally the universe (however one may define universe!) provides a gift and reminds us to live in the moment. On a particularly horrible day I experienced a tap on the shoulder that literally brought me front and center to the present. My 19 year old daughter was in a psychiatric unit of a trauma 1 hospital in Seattle, newly diagnosed with bipolar disorder, preparing for a series of ECT treatments. It was Mother's Day. She is a musician and had just played and sang "Blackbird" for me as my gift when she suddenly crashed again, back down into her depression and asked us to leave. I was about as low as I had been over the last 6 months of hell. My husband talked me into taking a walk through an old growth forest arboretum. It was an absolutely beautiful day and suddenly I had this feeling of smallness in an ancient world. I was simply in the moment of that beautiful place, a tiny speck on our earth's curve. I relaxed, I let out and took in a breath of air. I was in that moment, at peace.

Differences

2009-02-01T20:23:00.000-08:00

Every other quarter I teach a graduate class on disabilities and special education. I ask the students to write a paper discussing diagnostic labels. In special education there are 13 disability categories. Do we need these labels? What do you think and why, I ask them? I read pros and cons of labeling and most of the students write very convincing papers from whichever side they take on the issue. So I thought I needed to write my own response. Wouldn't it be nice to have a world in which we didn't need to "label" anyone as having learning, mental or physical disabilities? Let's just treat everyone in a way to address and support strengths and needs. I want schools to provide a variety of learning supports based on individual assessment. Wouldn't it be great!!! But how do we make sure that we access the research that is available to provide support that is grounded in science? My daughter was finally diagnosed with bipolar disorder after numerous treatments and medications. I don't want her to be known as the "girl with bipolar" but I do want the doctors to tap into the newest research and the best medication and treatment for her. I want her to know her strengths and talents and to embrace and manage any of the symptoms of bipolar.

I want the same for children and young people with learning disabilities in reading, with Asperger Syndrome, with emotional behavioral disorders, with ADHD...I want the correct diagnosis so as to identify and provide the best support and treatment for every child. Not to "label" a person but to give every opportunity for the fullest potential and choices. Labels can be so negative, diagnosis can shut down dreams and increase fears. I want diagnostic labeling to add to knowledge and support for each person and embraced in a way that adds support and takes away fear.

On the Ropes

2009-01-25T19:25:00.000-08:00

Linea and I just returned from presenting at the Wisconsin State Transition Conference. We shared information about bipolar and the issues around transitioning from high school to post-high school for young people with mental health conditions. Although I have presented for many years to many audiences presenting from a personal perspective is different...and scary. We are providing information and research but also a very personal story. The participants at the conference, held at Wisconsin Dells, could not have been more receptive and supportive. It is all worth it when we hear from people that have also been diagnosed with bipolar or have family members that have and are inspired, even in a small way, by our story. Thank you, Wisconsin, for your warm welcome! Let’s get rid of the stigma and prepare young people to advocate for their needs and be proud of their strengths. Let's make sure that there are services and support for young people when they turn 18 and may not be under their parents' health care. But, I learned even more than those that came to our presentation.

See, I am afraid of high places. My palms sweat simply watching a movie with the actors dangling even 20 feet above the ground. I am terrified when my feet are off the ground. It doesn’t matter if my brain tells me I can’t possibly fall. I did something highly unusual at Kalahari Resort where the conference was held. The first night we were there I had watched Linea and her dad climb all over the ropes course. I took pictures and turned away to catch my breath when they walked across the skinny planks and ropes. But then, I, most fearful of high places, managed to walk across (and back through) the ropes course. Yes, I know I was there for professional reasons but I did it. Know why? Prior to this huge event (ropes course!) we had a small dinner in the bar at the resort where a band, including special education teachers, was playing to the great delight of the conference participants. Wisconsin is different from Washington State in that you don’t have to be 21 to be in a bar with a band. Mingled with all the teachers and school psychologists and DVR personnel were young people with disabilities, also attending the conference. As I watched them dance I was so inspired. The kid in a wheel chair that bumped down the stairs on his own and backwards to get out on the dance floor so he could spin with the little blond girl…the young man in his Packer’s jersey that was dancing away very happily all on his own…the young man dancing with two girls at once and did it so gracefully. You all encouraged and touched me in a way that caused me to say, “I’ll do the ropes course.” And I did.

Linea's blog

2009-01-17T14:45:00.000-08:00

My daughter Linea wrote so eloquently in her blog (http://www .lineajohnson.blogspot.com/) about depression and shared a beautiful poem by Jane Kenyon. It resonated in my heart so strongly. As parents we also worried and dreaded and tried to intercept any down draft creeping in to grab our daughter. She and I went through times when I would wonder (and ask) if something was coming back. As an intuitive mom I had been so right in the past but as she moved toward recovery my worrying intuits would become hers and would do neither of us any good. As I wondered and checked to see if she was "okay" she wondered and worried that maybe I saw something that she hadn't.

I am very certain that she can handle anything that will come up and that she wants to live a safe and healthy life, doing all she can to make that happen. When I have little fingers of worry trying to sneak past my resolve to trust I remind myself that this is my own and familiar feelings of fear and worry not a sign of Linea’s current health. My anxieties about her were the adrenalin I needed to keep me going when I had to. Now I am finally in the same space that Linea’s writes about: should it return in full force rather than the ebbs and flows she now knows I trust that she can “handle it” and so can I.

Her dad and I talked about how frightening it was when we felt we were on the edge of something bad happening yet how much more terrifying it is for the person in the midst of the battle. Someone in a flare-up of a mental health condition may not have the ability to make the call for help. Families or friends may need to step in. Figuring out how to step back out is sometimes a tricky dance. Linea has come so far since her hospitalizations and been through so much but she is now managing her own life.

My job is to love and support her as she leads the way.

Painting by Jordan Swain, "You have my sympathies" http://www.jordanswain.com/

Prince Thomas

2009-01-17T14:28:00.000-08:00

This baby boy was born to my oldest daughter and her husband in February almost one year ago. Our first grandson, the first great-grandson, the first nephew, the first great and great-great nephew...and the first boy in a family of mostly girls and women. You see why I call him the prince. What a wonder to have a new baby in the family! How incredible to see your daughter and son-in-law become amazing parents...overnight!! I know he has turned their lives upside down and inside out in a good way and he gives us all cause to think about family. How we live and interact with each other as a family and support his growth will make a difference in the man that he will someday become. I wish for us all love and patience and kindness as well as joy and silliness and play for our own lives and for his.

Hand Dancer

2009-01-13T20:45:00.000-08:00

I am not as serious in my day to day life as the first two postings on my blog might suggest. I listed "hand dancer" as a special talent on our website. You know what hand dancing is, right? My daughters are particularly attuned to this talent given I have practiced it throughout their lifetimes. The females in my family love to dance. If you are in a place where full body dancing is impossible hand dancing suffices. Hand dancing is something that is dependent on the music. Listen to "Steppin' Razor" (Chrissie Hynde) from the Breathing Fire album. Can you resist hand dancing to reggae? How about Allen Toussaint's "Soul Sister"?

Although I have followed the new laws regarding handless cell phone use I am unable to give up driving-while-hand-dancing. Sometimes I need to keep it below the view of the person in the next car. But hand dancing is portable. You can do it almost anywhere and in as big or as small of steps as you want. One can even finger dance if need be.

Of course full body dancing is always best. As low and tired as I can be, dancing revives me. What could be better than a two-daughter dance to Cyndy Lauper's "Girls Just Want to Have Fun" with grandbaby Thomas sitting on the floor bouncing to his own rhythm? It is time to let my dancer come out in public. If you have a hidden hand dancer somewhere inside, don't hesitate to bring him or her out. I would love to look at the car stopped next to me in traffic and see some awesome new moves. Don't we all have that silly and fun side down there somewhere?

What am I doing?

2009-01-07T21:41:00.000-08:00

I have moments of panic in the middle of the night thinking about "going public" with the story of my youngest daughter's illness. We are finishing a book together that is a very candid account of two years of hell. Linea's writing was honest from the beginning. Mine became so as I continued to write, rewrite and edit. Each layer exposed more of my truth (and my tears) as the process ever so slowly began to heal both of us in ways that are still somewhat of a mystery. I am sure that there are people who will wonder why we would ever do this. Linea’s dad (husband Curt) asked those questions. When we started putting our writing together and the idea of a book started to form he worried that this work would bring up painful memories best laid to rest. He questioned why we would want to revisit events that were very frightening to all of us. He wondered if by going public we would portray Linea as “the-girl-with-bipolar”. Through all of this he continuously said that he would support us in whatever we decided to do but he was very concerned. And, in the middle of the night, so was I.

The initial purpose of writing a book together was to offer an inside look at bipolar from our very personal experiences; a story of a young woman struggling through all the frightening symptoms (symptoms seems like much too benign of a word!) and her mother’s and families support, worry, love and anguish. The goal was to give voice to the many, many patients and families we met who were unable or unwilling to share their own story. We wanted to reduce stigma and increase compassion and care. But in the process of writing together, something unexpected happened for both of us and our family. We became stronger. I became stronger revisiting this story, thinking and writing about it from a deeper level. In my most terrifying moments I had held the pain at bay so that I could get through the day. By telling the story I faced this fear and pain and in many ways accepted it. I am not quite there yet when Linea says, “I wouldn’t want to change what happened to me.” I would give anything for her not to have gone through the pain that she did but I do know that our family is at a place of deeper relationships, trust and love after what we have been through. We hear from so many people who tell us, “…thanks to you and your daughter for your courage, thoughtfulness about helping others, and willingness to reduce stigma. You give the rest of us the courage to do the same.” But it is I and my family that has benefitted from telling our story. The truth will set you (me) free. And, as per Linea's blog, bipolar is an added wisdom. I want all my life experiences to add to my wisdom.

New Year 2009

2009-01-03T12:21:00.000-08:00

It is a new year. I always have a sense of excitement and potential as our earth enters a new stage and, like many of you, feel a “beginning”. 2008 was a year of relative calm compared to the previous three. In December of 2005 I came home to find that our house had been broken into, dumped upside down and the possessions that were most important to me were stuffed into my own pillowcase and taken away, never to be seen again. Although none of my jewelry was of immense value it represented years and years of gifts and mementos from my loved ones and commemoratives of special occasions and journeys near and far.

I thought that 2006 would be a better year and the beginning of a new collection of memories and perhaps jewelry. But in February we brought our daughter Linea home from college in Chicago, barely hanging on with a severe depression. She was soon hospitalized in a psychiatric unit of Harborview Hospital and diagnosed with bipolar disorder. Our lives all turned upside down as she fought through the depression, suicide ideology, mania and, as she describes it, “when I went crazy”. By December of 2006 Linea was back in Chicago, managing to stay in her music program but barely hanging on as I tried desperately to find a way to keep her safe and tried to come to terms with the inability to do so. By December of 2007 she was back in charge of her life and her health. I begin to breathe again.

2008 ends with many changes in our lives and, a little new wisdom in mine. My insight came while listening to two wise women from diverse and far corners of the world. I was honored to attend two days of events with the 2008 Opus Prize recipients. The Opus Prize, hosted this year by Seattle University, was established to “honor the innovative humanitarian work of those dedicated to helping transform the lives of people facing a future with little or no hope, and recognizes and supports the winners' extraordinary life commitment to life-changing work.” There is a worldwide search to identify three amazing people to honor with $1 million and two $100,000.00 awards to further their work. All three recipients were inspirational beyond words but it was the two women who fell into my heart, dropping words into my soul that I will not soon forget. Their words became my necklaces and bracelets for 2008, available to pull out, touch and remember an incredible experience.

Krishnammal Jagannathan from Tamil Nadu, India, and Marguerite “Maggy” Barankitse, from eastern Burundi, Africa, both spoke from a place of peace, love and acceptance. Both had experienced horrors against humankind and continue on a daily and hourly basis to battle injustice beyond anything I can comprehend. Krishnammal, an eighty-two year old, 4’7” devout Hindu has spent her entire life working for a humane and just life for the Dalits, members of India’s the lowest caste and some of its poorest residents, previously known as “untouchables”. Krishnammal lives with the Dalits and owns nothing herself. She told us, “When you have too many things you must spend time caring for them.” She has chosen to spend her time caring for the “unique spirit, the unique soul, and the unique divine light” that is in all of us and makes us all, on the inside, alike rather than different. She does not worry about tomorrow. Marguerite, a bubbling, smiling fifty-four year old woman known as “Maggy” said to the room full of Seattle University faculty, “Why are you all so worried about the tomorrows? You must know that you have no control.” She laughed and went on to tell us that only by living every day with love and belief and hope do we have any possibility of affecting tomorrow.

I have held tightly to what I hoped was an ability to control my daughter’s future. I have been as vigilant as a mother can possibly be with the sole purpose of not losing her. I will always be ready and available to support her (and her sister and my husband and my grandson and my family and on it goes) yet I will wear this new bracelet given to me in the words of Maggie and Krishnammal…to live and love today. It is the only way to influence tomorrow.

To see the videos of Krishnammal Jagannathan and Marguerite “Maggy” Barankitse go to http://www.seattleu.edu/opusprize/recipients_marguerite.asp. The videos are a little difficult to find. These are located about halfway down the right hand side of the page for each recipient under “Learn More About” and the Opus Prize logo. Inspiring for a New Year!

Maggy and one of her many children