09/26/97

Childhood Schizophrenia

A Louisiana family wrote to me recently about their son, Doug, who has schizophrenia.  They have decided to make their personal experiences and knowledge about this illness available to others.

"Good morning.  My name is Doug, and I will be 16 in a few days.  I have the neurobiological brain disorder, schizophrenia.  But in most ways I am like other boys my age.  I like basketball, pool, girls, cars and I hate having to do homework.  I take olanzapine and that helps me a lot, but I still need the structure at the hospital.  There are lots of reasons I have to live at the hospital.

This is my ninth hopitalization.  I bounced in and out of hospitals because I never could stay in one long enough to get me stable on medication until now.  Then when I am home there are not enough community services and there is not a school program for me.  I am working on my GED.  Just because I have a disorder in my brain and learn differently than other people, does not mean I cannot learn.

A big reason I have to stay in the hospital even when I get strong enough to come home is that my parents can't afford the rehabilitation I need and the state doesn't give much money for rehabilitation for people like me.  Another reason is that our state does not have Medicaid waivers for kids like me to live at home and get their treatment." Note:  Connecticut recently passed a new law, Public Act 97-272, which abolishes the requirement that children be placed into state custody to receive extended mental health care.

"I know all kids don't need to be in residential treatment, but it saved my life to be able to stay in the hospital.  For some of us home and school and the community are not safe enough places to work on our problems.  How can I work on my rehabilitation if I have new stresses every hour to deal with and I can't handle stress?  Some of us need a safe place to get strong so we won't have to live in the hospital forever. 

I want to tell other people that they should try to understand people like me.  I want to tell our state that we need to do whatever it takes to help kids like me.  I want to tell parents of kids like me to stay tough and never give up.  I want to tell other kids like me that you can make it no matter how bad your problem is.  Just hang in there." -- Doug

"My brother, Doug, is my hero.  He struggles to participate in life and not just watch others enjoying themselves.  He has chronic schizophrenia, which is rare for his age of 15.  His illness makes it hard for him to tell reality from the cruel joke his brain is playing on him.

Doug's experiences are real to him.  He sees buildings burst into flames, feels the heat and smells the smoke.  He hears noises when there are none.  He fights fear and paranoia.  Sometimes his thoughts are scrambled and he endeavors to make us understand what is clear to him but not to us.  Often he is in the hospital for days, weeks or months, trying new medicines and battling their side effects.  He must endure the stigma of mental illness as he strives to prove he is not a social misfit. 

Doug is one young man struggling to be his best in a world that, for him, really does turn upside down and inside out.  He inspires me as he daily meets each challenge successfully and earns the respect of others.  I admire his strength, determination and courage.  Doug is an overcomer, and he is winning the war against his brain." -- Tiffany

"My son, Doug, has been diagnosed with chronic process schizophrenia since he was 13.  He also has Klinefelter's syndrome, a genetic sex chromosome anomaly where the males have an extra X chromosome.  He has spent much of the last three years of his life in and out of hospitals, with the last year being spent in the state mental hospital.  He is one of our family's heroes and we admire his courage.  I am a Family Voices coordinator in Louisiana, where I work full-time as an advocate for children and adolescents with mental health problems.  I welcome your questions.  You can write to me at the following email address:" -- cawilson@bellsouth.net

Please send questions or comments to bbruno@snet.net.