Should I have known?

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

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....

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. 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.

Help Children and Youth with Bipolar Disorder: Just a Minute

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

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

What's going on, anyway?

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

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

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

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

4. How can the environment be changed and/or the consequences of the behavior? (Teacher meets with Shonna individually prior to the class. Make sure that Shonna has had breakfast. Explain the assignments (give specific work prior to group work); give snacks if necessary, put in small, supportive peer group. Check in often with a touch on her shoulder and thumbs up/ thumbs down. Give Shonna "token" to place on desk when she needs teacher assistance. Give positive reinforcement for looking at peers, speaking to group. Check to see if this should be private or public. Some kids don't see public praise as a reinforcer!

Assess Matt to determine his skills in math and social studies. How does Matt do during other periods? If okay then look at environmental factors. Tired? Hungry? Over-stimulated? Medications? Make sure that Matt has an assignment that allows him to be successful. Build assignments to optimal level so Matt is successful but still challenged. Develop a self-monitoring plan for Matt. Have Matt keep track of successful on task behavior and provide appropriate and natural rewards. Even 6 year olds can do this!!)

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

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

Dearest Daughter, A Love Letter on Your Graduation

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

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

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

Empowerment!

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

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

Treatment: All in the Family

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

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

One of the most terrifying times was when Linea first crashed into bipolar disorder. Hospitalizations, suicidal depressions, manias with overdoses, and more symptoms than I could have possibly imagined happening to my daughter happened. Yet we are all closer and more honest with each than before. There were times when Linea's dad and I were completely responsible for her life. We managed the hospitalizations, the medical insurance, the transition from hospital to home, the doctor appointments, the medications, the hours and hours of agony as she tried her hardest to get stable. Of course she did the hard work and she experienced the pain but we as a family shared it with her every step of the way as much as we possibly could. At one point I said to her, "You don't have to fight this anymore. Let me." She was too exhausted to keep herself safe. Slowly as she became stable we pulled back. She told me, "Mom, you do such a good job of taking care of me I am not sure I can do it myself." I knew that my job was now to help her become secure and independent in her ability to care for herself. We had long and honest discussions about this. We have a relationship built on previous years of honesty, laughter and love where I can ask her anything and she can tell me everything... or not. We trust each other. She can ask for my help when she needs it without feeling as if she were giving up control of her life again. I can ask her questions that may be from old worries yet she will talk with me about my fears. She is brave and she is honest. While I was giving her everything I could I was also seeing my own therapist. I needed a safe place to scream and cry and say, "It's not fair." I needed to be able to deal with my own PTSD of almost losing my daughter. I needed to remember the laughter and the quirkiness and the strength of our family. I needed to practice breathing.

 

Writing together, speaking and traveling together has only strengthened our trust, love and laughter. Our family has what some might define a unique sense of humor. Some of the experiences we have had with this illness definately makes us laugh. In general, life is funny, don't you think? There were many times and still are that a good laugh refreshes us, saves us and reminds us that we are just silly human beings trying our hardest to do our best and sometimes failing spectacularly. As one of the men in the psychiatric unit at the hospital said to Linea as she was preparing to leave, "Listen to the voices out there. They will help you." Hopefully those voices are family, whatever the definition, and family that loves you more than anything else in the world. (Picture: Mama reading to Linea)

                                                                                                                                                           

Suggestions to parents and others: If you haven't already done so, talk to your children about mental health. This should happen just like we teach our children about physical health and harder topics like sexuality. Open the door to the opportunity for them to tell you about their own thoughts, concerns and fears. If you need a support group check ot BringChange2Mind, the Child and Adolescent Bipolar Foundation, NAMI and SAMHSA.                                                                                                                                                                                                                          

Necessary Treatment

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

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

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

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

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

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

When Should We Tell?

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

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

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

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

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

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

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

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

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

Telling the Truth

     Why tell your story? I posted "my story" on this blog last Friday. Why did I wake up during the night with anxiety and worry? It is not as if I haven't shared my story before. It is not something that I have kept private. My youngest daughter, Linea, and I travel around the country presenting information about mental illness and adolescents, sharing research, best practices and resources. We share our own experiences. But something about seeng the faces of those with whom we tell our story makes a difference to me. When "my story" went out on the world-wide web I could not see the faces. I couldn't tell if there was acceptance or rejection, understanding or disdain, or a shared human-ness or a distancing. I tossed and turned. I heard the voices, "Why would you want to tell people?"

     A short recap on "the story": I was teaching a graduate class about children and adolescents with emotional and behavior disorders when Linea was "pulled out to sea". (The irony of it all!) Within that short winter quarter she was brought home from her second year in college, too ill to live 2,000 miles away and unable to continue in her studies. By the time the quarter ended she was hospitalized for a severe depression and soon diagnosed with bipolar disorder. At the time I decided to tell the truth to my students, my colleagues, my family and friends. The truth became more frightening and horrifying as the weeks and months went on. Sometimes I told the truth because I had no option other than simply disintegrating with the fear and the sorrow; with the inability to make things better. I wanted to find anyone who could fix my daughter. I wanted to share my grief and perhaps lessen it. I was unravelling. But my watchful mind was noticing the impact on others as they accompanied me on this journey in both small and large ways. There was an honesty that had perhaps not been there before. There were small changes in attitudes and there were the occasional "ah-ha's", so valued by a teacher. There were many who shared their own story or of someone whom they loved, often for the first time outside of their immediate family. In the beginning I most likely told my truth because I had no ability to do otherwise. I could not keep it hidden within me without falling apart. But as we moved forward and through this initial diagnosis and treatment Linea found stability. It was a wild and unpredictable time but finally, in fits and starts, it settled itself. (Unpredictable - What a mild word for that time of chaos and mayhem!)

     Linea and I settled into an agreement with this illness. I respected it, I hated it, I accepted it and eventually I chose to embrace the possibilities that came with it. These possibilities included joy and thankfulness for every minute and day of stability. It also deepened an honesty between Linea and me, and within our family and our friends.
     Linea and I had the wonderful opportunity to hear Kay Redfield Jamison speak about her own battle with this "insidious disease called bipolar". She noted that people are often unaware of the many who are living with mental illness and who are stable. It is much easier to keep one's story hidden when stable. It is much easier for me to put away the story of my daughter's mental health condition when she is stable. It is much easier to forget it, to pretend it is gone forever. But it does not go away. Stability is an every-single-day effort to stay healthy.
     Linea and I have spent hours discussing this and we are in agreement that we have a responsibility to share her and my story for the 1 of 6 adults and 1 of 5 young people who struggle with a mental health condition and for those who are unable to share their own story. I know many people who are not comfortable sharing such intimate information with either their closest friends, their employers or the world. I know many people who are unable to do so because they are too ill and using all their energy to stay afloat. It is okay.We are blessed with resources, knowledge, information and the ability to speak about our journey. We have a responsibility. We join BringChange2Mind, a non-profit organization created by Glenn Close, the Child and Adolescent Bipolar Foundation (CABF), Fountain House, and the International Mental Health Research Organization (IMHRO), to fight the stigma of mental illness and provide resources and hope to millions of people one story at a time. It still provokes anxiety but it is also freeing. Thank you for reading my story and allowing me to sort this out in my own mind. I would be honored to hear yours.

My Story

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)

Ahhhhhh, Parents!

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.

Happy Birthday, Linea!

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

Where's Sister?

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?

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!

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)

Apple Cheeks

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!

Dear Daughters...

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

The Crying Cup

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.