Tuesday, January 4, 2011

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.

Saturday, November 20, 2010

Grown-up Children

My post for the Child and Adolescent Bipolar Foundation:

My babies have turned into grown-ups. Whether we call them “grown-ups” or “young adults” they are still our children. My mother once told me that as our children get older there may be less day to day problems but the problems that do need our attention are usually big ones. We may not have to deal with the non-stop parenting demanded by a two-year old or the tenuous yet diligent parenting of a thirteen-year old but the problems that are there are likely serious. Things like lost jobs, lost loves and other difficult issues demand our assistance. Parenting a child with a mental illness or any chronic illness adds its own complexities and worries. Our children take their mental illnesses with them as they move into adulthood. This can certainly complicate parenting. I know this intimately. I have been “writing” this piece in my head for the last two weeks which is generally the way I write. I start with a thought and eventually turn it into a paper complete with sentences that I write in my head in the middle of the night, while waiting in line and while on airplanes. Imagine my surprise when the piece I had been working on suddenly showed up on the blog my daughter writes for BringChange2Mind. I read it and decided not to write mine but then I thought again. Perhaps this particular time in our lives would be helpful to others when told from both the young person’s perspective and the mother’s.


My daughter, Linea, has bipolar disorder. She is now twenty-four years old. I have some degree of PTSD from her illness, particularly from almost losing her twice and from her lack of self-care during her sickest times. Her inability to care for herself during those years left a fear deep in my soul, resting yet ready to pounce if I wasn’t vigilant. I have finally learned to trust her ability to care for herself. I have learned to trust that she tells me when she needs me to help her with something. I have learned to trust that she tells me how she is feeling without me quizzing her. Trust has come from long talks, complete, total and sometimes painful honesty, and from time. She has been stable for a few years now and graduated from college last spring. We have sold a book together. We speak nationally. She works on various projects with various organizations in the field of mental health advocacy. She recently accepted a position with a project that was very exciting to her. But I began to see an increase in her anxiety. She seemed unable to ever relax. She didn’t look “okay” to me. She lost weight rapidly. I knew all the symptoms that had plagued her in the past and I was afraid. I gently probed but didn’t get much more from her than she was worried about the most recent project she had agreed to do. I spoke about my fears with her dad and we both agreed that she was moving into a dangerous phase. I talked to her again about her commitments and urged her to take something off her plate. I told her that if she didn’t, I believed she would be hospitalized again. I was honest with her. Within a couple of days it became very clear to me something needed to be done. My heart wouldn’t stop pounding and my worries wouldn’t rest. I knew something was seriously wrong. Her dad and I decided we needed to intervene. It was frightening to me because I didn’t want to make her angry or have her push us away. Yes, I trusted her. Yes, she was a young adult making her own decisions. But we had to do something.


We showed up at her apartment, not to take her out to a meal or go to an event but to have a heart to heart talk. She became very anxious but it worked. She listened. She asked for our help in sorting everything out. I told her she would feel worse before she felt better given she had to do something very, very difficult for her to do. She had to “disappoint” the people who had given her the opportunity to work on a very exciting project. I told her that the ramifications to her health were far worse and I think she believed me. Close to a full blown anxiety attack she made the decision to “quit” her job. We supported her in taking the next steps to resign from this position. It was extremely difficult and emotional for her and therefore for me but I knew without a single doubt that she was on her way to the severe side of her illness if she did not take care of herself.


Do you hope for words of wisdom from a mom who has a twenty-four year old daughter with bipolar? I certainly am not an expert in your own lives and I don’t know all the intricacies of your experiences.I humbly offer this: trust yourself as well as work with your child to trust him or her. It is so easy to second guess what to do, what to say. Listen to what’s going on in your own heart and trust that it is telling you what to do. Thankfully Linea agreed with us but she hadn’t just a few weeks earlier. Sometimes it may mean going back again and again but don’t give up. When someone we love is in the middle of symptoms of this illness, she or he needs the support that a mom, dad or other close support person can give. Build trust and be honest. In the long run it will lay the groundwork for the hard and big problems that will arise.


Now you should read my daughter Linea’s take on this. It has many similarities and some differences. I am so very proud of her!

Tuesday, November 9, 2010

Help Children and Youth with Bipolar Disorder: Just a Minute

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

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

Wednesday, October 27, 2010

What's going on, anyway?

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


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

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

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

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

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

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

Thursday, October 21, 2010

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

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

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

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

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

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

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

Saturday, October 9, 2010

France

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

Tuesday, October 5, 2010

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

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

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

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

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

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

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