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.