Wednesday, March 17, 2010

Where's Mom? Dad? Anyone?

Diagnoses of mental health conditions are the topic of the month. Linea is writing about her own diagnosis and provided many resources on her blog for others who may be facing a new diagnosis. As Linea's momma I have traveled this road with her as have the rest of her family. Families are intricately involved in the diagnosis (and subsequent treatment) of a mental illness or any other serious or long-term illness and so important to stability.

I am very involved in BringChange2Mind and various other mental health organizations around the country. I am privileged to hear the stories of so many people struggling with mental health conditions. If I were conducting a research project I would sort all the "qualitative data" (the stories) and look for themes. Well, one doesn't have to be a researcher to find those themes concerning diagnosis and family. There is a re-occurring story of anguish, loneliness and loss. Countless people write to Linea and I letting us know that our close relationship and support is something they wish they also had. There is an absence of care for many who are temporarily or permanently in need. For every parent who turns away or doesn't know what to do or somehow gives the message that they are embarrassed or angry or not accepting of their child (no matter their age) there is a step backwards from a healthy lifestyle for the person suffering with a mental health disorder. A message is sent, "You don't matter", even if that is not what is meant.

I know that it is often very difficult to have a relationship with someone who is in the pits of mental illness. I know that often help is slapped away and therefore not offered again. I know that parents and family members often have their own problems and aren't able to offer support and assistance or can't even begin to figure out how to do so. But still....every person should have a circle of family available even if the people in that circle are not blood relations. A parent or family member or friend could simply ask, “How are you?” and “What can I do to help you?” and then, listen very carefully for the responses without judgment or blame.

There is a process called "Futures Planning" used to develop a plan for children and adolescents with disabilities. Some of the steps of this process might be useful here. These include answering the following questions:

What are your dreams?
Who can help you with these?
Who is in your inner, middle and outer circle of support?

The people identified in this process agree to provide an "unconditional circle of support". This might include family members, professionals and friends. Agreements are made between the participants and the person with the disability is an active partner EXCEPT when they are not able to do so because of their disability or illness. There are many who might benefit from a circle of care and support. I see the look of utter loneliness on the faces of people living on the streets and struggling with mental illness. Would a circle of care have prevented this sad life? I consult with a program for children and adolescents in foster care and I witness their own fractured circles. These children need a wrap-around system of care not broken apart every time they move from place to place, from school to school.

Finally I want to add that my daughter is not "lucky" that she has me, her dad and her family as she is often told. We are lucky to have her. Yes, it is difficult for families with few resources to support someone with mental illness and I know that we are privileged to have the resources that we do. I also know that this experience has provided me an opportunity to learn more than I previously could ever have imagined. It is because of both the terrifying experiences and the honesty and love offered that we are more thankful and joyous and…generally less worried about the small stuff!

I wish every person who is alone their own circle of care. Let us all be part of that circle.

Saturday, March 6, 2010

There's a Crack in Everything

Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That's how the light gets in
(Leonard Cohen, Anthem)

This post is dedicated to every single young person diagnosed with a mental health condition. I love the video that some kids created just "walking around in the muddy springtime filming dirt and generally looking goofy". I just love the creativeness and wisdom and general "goofiness" of youth. Please take a minute and listen to the words of Cohen's Anthem and watch the video produced by "Mahiwi".

The light came in with thunder and lightening and all things scary when my daughter was diagnosed with bipolar disorder. I have written about diagnosis before with suggestions for families and friends. One step removed from my personal experiences. Diagnosis is always tricky with any illness. The frightening part of it is the "wait and see". With bipolar disorder it is unnerving in many ways. Wait for a mania that can spin you out of control. Then wait for another one. Wait for a deep dark depression that can send you into a suicidal loop from which you cannot return on your own. Wait and see, wait and see. Try these meds, no these, no these. Whoops, these didn't work so well. Must not be just depression. And then there are all the feelings a parent goes through with the stages of grief from denial, anger, bargaining, depression and acceptance. Like the "poles" of bipolar these can come on top of one another or in completely unpredictable sequences. My own story coupled with Linea's provided me with first hand experience of these steps.

Denial. Hell, no, this is not bipolar! (whoops, was that anger?) No, we had seen nothing of mania. Yes, a severe, severe, depresson. No mania. Let it not be bipolar. That is a horrible "label". Read the papers. Crazy people have this diagnosis. This CANNOT be.

Anger. For me this took on the, "It's not fair" persona. This daughter didn't deserve this. She had done nothing to deserve this. Her life was going forward as she had planned and she had worked so very hard to get there. NOT FAIR. I know this is a western way of thinking. More than half of the world thinks the opposite. When something good happens they wonder, "Why me?" But still. Not on my watch. Oh yes, and there was that one time I yelled at my husband, Linea's dad. "I am doing the best I can!!!"

Bargaining. I really got into this one. I actually said, many, many times: PLEASE God or whomever, PLEASE give this to me. I can deal with it. She is only 19 years old. I can just go away somewhere and fight the good fight and win or lose but not her. PLEASE give it to me.

Depression. I will go see a therapist with you, daughter. I personally do not need this because I am a professional. I know this stuff. Whoops. Inside of me was a sad, broken little girl who was so very frightened and so unsure of what to do. I was supposed to be the mom. I knew things yet I couldn't fix it.

Acceptance. The crack let the light in. This illness has cracked open a deeper love and honesty in our family that we could have ever expected. We were a close family before but things have changed. Deepened. Strengthened. We are stronger. Broken pipes? Unexpected bills? Disappointments? Sorry, we have stood toe to toe with much worse. We almost lost our daughter. More than once. We are grateful. We are appreciative. We love deeper and stronger and although we certainly forget at times, we appreciate every minute of health and happiness.

I was going to write a blog on the diagnosis of bipolar disorder in adolescents and young adults. My thoughts took me in a different direction. I hope that you are not disappointed and that somehow this touches you. Thank you for reading. I love you Linea! Thank you for letting the light in. (You, too, Jordan of my heart!)

Tuesday, March 2, 2010

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?