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.

Not Just for Kids!

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

“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

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.