Dying of Kidney Disease

This is unbelievable and yet horrifyingly true.  ‘Jenny’ had been fighting her illness for almost half of her young life. Her foe was familiar yet still terrifying with its relentless and changing symptoms that reoccurred despite a long list of medical interventions. She had been through intense treatments with numerous side effects and a lengthy hospitalization when she was 11. Now, at 15, her illness was back with a vengeance. The diagnosis (kidney disease) still puzzled the medical team as they debated what to do next.

At the advice of her doctors, Jenny had recently started a daily outpatient treatment, but her illness continued to escalate and was now life threatening. She was tired of hospitals, tests and medications that didn’t work and seemed to only make her sicker. Nothing could ease her pain. Jenny wanted to give up, she wanted an end to this ‘life’ that was void of most of the things that teenage girls ought to be doing and filled with suffering. Jenny had lost hope.

Jenny’s parents took her to go to the emergency room, hoping that the doctors could convince her to be hospitalized, to get the care, the monitoring, the medications she needed to keep her alive.  In the emergency room, Jenny panicked. The nurse brought in a syringe, and Jenny screamed that she wanted to go home. She refused treatment.

As in many states young people can refuse treatment once they turn 14.  Jenny’s parents couldn’t bear to see their beautiful daughter in so much agony, and they couldn’t bear the thought of losing her. Yet Jenny stood firm in her decision. She was so sick, so exhausted and so weakened by her kidney disease that she wasn’t thinking clearly. Yet her parents had no authority to get Jenny the medical care she so desperately needed. She was slipping away right before their very eyes.

One of the nurses pulled Jenny’s parents aside. There was a way, but it would be difficult. Because Jenny was clearly in danger of dying, her mom and dad could call the police who could take over and legally (and physically) force Jenny into treatment. It sounded horrible, but the alternative was worse. Reluctantly they made the call.

The police arrived, and the process began and became increasingly complicated. The hospital was not equipped to treat Jenny’s condition, so she needed to be transported elsewhere. The caseworker worked to find a hospital that could treat Jenny and that had a bed available. Hour after hour went by while Jenny became more and more agitated, her pain increased and the medications she was given had little effect.

Finally a hospital with an open bed was found. As quickly as Jenny’s parents saw a glimmer of light, their hopes were dashed. The ‘hospital’ was 90 miles away and was a part of the state department of corrections. Jenny’s parents begged for a different placement. They knew that there was an open bed at a different hospital but Jenny could not go there. Now that police were involved, the options were limited to the hospitals that contracted with the county. Jenny’s parents no longer had any authority, not over their daughter, not over her care. They could not take back their decision and they could not take Jenny home. They were powerless.

Jenny sobbed and yelled and cursed. She was terrified, the police were frightening her and she didn’t want to be so far away from her parents, from her home and from everything familiar. One of the policemen barked at Jenny, telling her to quiet down, to stop yelling or he would charge her with disorderly conduct and put her in handcuffs. Jenny’s parents were stunned. How could this be happening? All they wanted was to get medical care for their child and suddenly she was a criminal.

The ambulance arrived to transport Jenny to the ‘hospital’. Jenny begged for her mom to ride with her in the ambulance, to comfort her and hold her hand. But the police didn’t agree. Jenny would be accompanied by one of the police officers, the very people who terrified her. The best that Jenny’s parents could do was to follow the ambulance, fighting to see the taillights and the road through their tears.

At the hospital, Jenny was read her rights . . . “You have the right to remain silent, you have the right to an attorney, anything you say may be used against you . . . “.  Jenny’s parents were in shock. How can this be?? She is ill. She needs treatment. She has kidney disease! Her mom said “Can we speak to the doctor? We need to discuss Jenny’s medications, her care, how do we get her out of here????”  Sorry, the doctor had just left for the night with only the nurse on the unit and “in charge”.  The doctor would call in the morning. 

Heartbroken and angry, Jenny’s parents drove the hour and a half home. They made phone calls to the hospital that was equipped to provide decent care and were told that Jenny was on a waiting list. Perhaps a bed would open in two days. But there were obstacles. Because Jenny was in police custody, the doctor, the social worker and the county caseworker would all need to agree to the transfer. And then, there would have to be a court hearing. Jenny would need to testify on her own behalf. “In person?” asked Jenny’s dad, “Or from the hospital by phone or in writing?” They were told “It depends.”  If Jenny had to appear in person she would be shackled and transported by the police.

How could this happen in 2013, in the United States, to a critically ill child? It does. This story is entirely true except for one detail. “Jenny” is suffering not from kidney disease, but from a mental illness. Is this scenario acceptable for a child with kidney disease? If not, then why should it EVER be acceptable for that same child with mental illness? My heart is breaking.

 

It's All in Your Head!

Are people more willing to pay to avoid physical illness than mental illness? The study might surprise you! I have been so busy with my daughter's and my book, released May 8th (Perfect Chaos - St. Martin's Press, 2012)! I haven't blogged much so thought I would share an article in which I interviewed with the author, Reyanne Weaver. It is a rather long article but I think also very interesting. Take a look at EmpowHer. It's not until the second page that I FINALLY get to give my opinion so if you are interested, keep reading!!

An excerpt, "“Neighbors and friends rally around someone with breast cancer while the doctors determine which treatment option is best based on sophisticated diagnostics,” Johnson said. “I do not believe the same level of support exists for a woman who is hiding in her home battling the overwhelming [effects] of depression.”

Fighting the Good Fight: When Insurance Won't Cover Vital Treatment

Here is a blog I wrote for my good friends at The Balanced Mind. If you haven't visited this wonderful resource, do so! The blog is a long one but it was a long "fight"!

I said that once the fight was over I would write about it. It is not quite finished, but, close enough! I was newly invigorated to write this when NBC Nightly News aired a piece recently on eating disorders and boys. The final comments included what parents should take note of and the caveat, “you may have to fight your insurance for coverage”. Well, yes. And fight we did. Here is the short version of a very long story and a two inch file.

My daughter was diagnosed with an eating disorder, and, after an evaluation, the recommendation was a 30-day partial in-patient treatment program at $1,000.00 per day. You can do the math. Our insurance company approved this treatment plan, but after careful research and discussion with the psychiatrist and psychologist, an out-patient wraparound team approach was developed. This included treatment from her psychiatrist, psychologist, eating disorder (E.D.) specialist and a nutritionist; as well as a significant commitment from family to eat every meal together for at least the first month. Linea met with her psychologist and E.D. specialist once a week. She met with her nutritionist twice a week for the first few weeks and then once a week. The insurance company covered three treatments from the nutritionist and then denied coverage. Why, you ask? It is the policy of the insurance company to cover THREE visits with a nutritionist in a lifetime. Yes, you read this correctly. 

If she had been in the in-patient treatment program, she would have seen the nutritionist once or twice a day for 30 days. The insurance company would have covered that. When asked why they wouldn’t cover the outpatient treatment from a nutritionist they replied, “We don’t have the codes.” Oh my! I was so irritated. After discussion with Linea (and her approval) I submitted an appeal to our insurance company with the following:

1. A table comparing the approved partial in-patient treatment ($30,000) with 30 days of outpatient treatment ($7,000), itemizing the costs of each treatment professional. As well, I compared the cost of 30 days of hospitalization if she did not receive treatment.

2. A letter from her psychiatrist referring to American Psychiatric Association guidelines, which state that eating disorders cannot be treated without a nutritionist.

3. A letter from the past president of the American Eating Disorders Association and her treating E.D. specialist stating the same, as well as the risk of long term treatment without the participation of a nutritionist.

4. A letter from her psychologist stating the same, and her opinion that the outpatient program would be successful, ultimately costing the insurance company less than the partial in-patient 30 day treatment program.

The appeal was denied. Reason (in case I missed it the first time): "The insurance policy provides coverage for only three lifetime visits to a nutritionist". "But", they wrote, I could "go to a second appeal". Okay, yes I will.

The second appeal, which supposedly went to medical personnel this time, rather than clerical, included all of the above and more documentation of the research on eating disorders, as well as letters that spoke of the disparity of services. Second appeal: denied. They wrote that I could talk to my Human Resources office. Okay, yes I will. By then, I was not going to let this go. After 3 months, at $110 per visit, it was adding up. More than that, it was discrimination, and it was offensive. The insurance company was overriding the treatment plan of my daughter’s doctor. Eating disorders are life-threatening. Recovery is possible with research-based treatment.

I approached the director of compensation and benefits in the HR office at my work place. Again, with permission from and discussion with my daughter, I provided him with the packet of information, and I added an additional letter. I compared treatment from a nutritionist for a person diagnosed with an E.D. to providing physical therapy to a person recovering from a stroke. THREE visits per lifetime??? I added, “I am very committed to assuring that people with mental illnesses receive the coverage and care they need as comparable to those with 'physical illnesses', even though we know that mental illnesses are a brain disorder and therefore are 'physical'. Thank you for supporting this and joining me in 'walking the talk' of social justice.”

The response from the HR director was, “My conclusion is that the nutritionist portion of the treatment plan described in (the psychiatrist’s) letter is eligible for coverage under the University’s PPO medical plan. We judge these services to be medically necessary. Our office will instruct (the insurance company) to take necessary steps to reprocess claims submitted by the nutritional therapist, and to prepare the claim system to accept future related claims that are submitted according to the same treatment plan.”

Of course, there was one more roadblock to slow us down. All the invoices had to be resubmitted, and since these were already paid for, I had to send invoices showing this. The reimbursements were processed again, one-by-one and very slowly, with checks sent to the nutritionist, who then had to run these through her business and send me a check. You can see why most people just give up. I would guess that most young people in the midst of an illness like this would not be able to fight this system. Hopefully, there are family and friends that they can ask to help and that can push back at the health care system.

The entire process took over a year to resolve. I am still waiting for the last two reimbursements. I had no idea that my HR director could assist with this. I had no idea how much effort, time and documents it would take. Please share your experiences of seeking and getting the coverage that your child deserves. Help those who can’t figure this out on their own. Together we can make a difference.

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!

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?

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.

Save the Amaryllis!

I have been out in schools this week observing my practicum students in special education classrooms. The two schools that I visited were both schools for kids who can't find success in the neighborhood school. In these classrooms are adolescents who are failing in almost every area of their young lives. They have lived in multiple foster homes, they have been victims of abuse, they are "credit deficient" towards graduating, they are poor, and they are at high risk of dropping out of school. They have "emotional and behavioral disorders"....and why not? My two graduate students overwhelmed me with their care and their skills working with these students. One of these students just finished his masters in teaching and was interested in special education so I recruited him for a second masters degree. So did Edgar (our Papi of the Mariners) and Holli Martinez with their commitment to assuring that we have teachers from underrepresented populations in our schools and more minority students become teachers. They do this through the work of the Martinez Foundation. The Martinez's join me in our shared pride of my grad student, Mr. DeLeon. The young students themselves were awesome and so worth the effort to provide them services and support to keep them in school and prepare them for life after high school. My own research tells me that over 50% of these kids will drop out of high school. The national research tells me that one high school dropout contributes about $60,000 less in taxes over a lifetime and if the male graduation rate were increased by only 5 percent, the nation would see an annual savings of $4.9 billion in crime-related costs. So what's with the amaryllis? I visited a high school that holds approximately 150 teen-agers, all at high risk of dropping out. They were there because they couldn't be successful in a traditional high school. Mr. DeLeon held them spell-bound as he taught them how to write a thesis statement. (Really!) Their interest peaked as the students wrote their statements concerning certain types of automobiles and basketball players. My grad student, dressed in slacks and a tie, holding court in a beat up portable behind a beat up school building, kept their attention for the entire time I was there by assuring there was relevancy in his lesson to their own lives and interests. So what's with the amaryllis? When I walked into the front door of this sorry and neglected school (not by the teachers or students) I noticed a gigantic amaryllis sitting on the counter in the front office. I have never seen one so huge. There were at least 10 large red, orange and white streaked blooms, all larger than my two fists. The secretary told me that they had a horticulture program and the vocational teacher babied this thing year after year. I was astounded. Astounishment turned to sadness when she told me that the program, green house and teacher would all be gone next fall. Budget cuts. The students love this class and are able to retreive science credits for their studies of plants and their work with the teacher, in the dirt, making real the words on the page. The research also tells us that to keep kids in school we must provide a relevent curriculum and for many of these young, disengaged and disenchanted students digging in the dirt, making things grow and understanding photosynthesis while experiencing it first hand is enough to hook them and perhaps help them take the next step to graduation, further training and employment. It might affect only a handful of the students in this school but these cuts are happening all over the country. As we push all students to reach No Child Left Behind we are leaving a few behind. Our most vulnerable kids are searching for mentors, support and a reason to choose school each day over everything else going on in their difficult young lives. The teacher knew how to nurture the amaryllis. We know how to nurture these kids. The cost of keeping this program is less than a handful of dropouts. The amaryllis will likely go home with the teacher next year and bloom again but what about Hector, Jorge, Conrad, Jermaine, Rashan, Mary, and Shatoya?

Out of the Mouths of Babes

I am traveling from Texas to Wisconsin presenting at conferences with daughter Linea on transition services and support for students with mental health conditions. I sat in and listened while she presented to a youth group. The adolescents were fabulous as usual. (See previous blog from last year's conference). These students shared their diagnoses of autism, Asperger Syndrome, PDD-NOS (yes, a student said he had that diagnosis!), cerebal palsy, depression, Down Syndrome and other disabilities. As they talked about stigma Linea asked them for examples of times they experienced this in their own young lives.

Some of their conversations from the discussion between the students and Linea:

"They just think I am a stuffed animal." "They think I am totally weird." "But you aren't weird." "People pick on me because I am in the special ed gym but they think I should be in the normal education gym." "I get hit." "They call me the r-word. I sometimes want to kill myself."

And this:

"We are normal kids with disabilities." "We can be brave." "We can say, "Please don't do that. You don't know what we have gone through."

It was hard for them to share their strengths but they did. They are all on Facebook. They are part of a youth movement spreading across the country through their stories, their bravery, their courage and technology. Watch out world, here they come. Ready to teach us all a thing or two.

                                                          

When Should We Tell?

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.

See Me

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

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

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

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

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!

Sorrow of the Classroom

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