Posted on 03/29/2005 10:47:53 AM PST by pwatson
I have tried to stay on the sidelines of this whole Terri Schiavo debate.
I kept having flash backs to 9-12-86 when my Daughter Lora was born. My daughter turning purple from lack of Oxygen as the doctors frantically tried to put tubes down her nose. The head doctor yelling to get that “Father out of the room”. My doctor brother later telling me how guilty he felt because he rushed in and put the life saving tube down Lora’s throat so she could breathe and now I have a life time of burden thanks to him. The Neonatal Intensive Care Doctor sitting me down to say most likely my daughter would not live more than a few months. My March of Dimes Nurse friend sitting me down over coffee to tell me how I had to become the expert on my daughters’ disabilities and not depend on Doctors. How more than likely Lora would have multiple defects. Then 6 months later the Autism diagnosis.
There were times we became so stressed out with the surgeries, hospital care, therapy sessions, work, layoffs, and fights with my Wife. There were times I just wished it would all go away. There were times I would think if only we had known; we could have had an abortion. We were so angry, why me, why us, what did we do wrong, why is God punishing us? Can there even be a God when so many un-just things happen? Our life had been so perfect, so much fun, then Lora came and our life as we knew it, ended forever.
Yes I could see how someone like the Husband of Terri Schiavo, after so many years could give up.
This weekend I was watching the news about Terri Schiavo. Unknown to me Lora, my 18 year old daughter with Autism, was standing behind my easy chair watching intently. She walked around my chair, looked me strait in the eye and asked “Daddy, why are they killing her?” Oh God, I thought, how do I answer this? I have spent so many years teaching Lora that she has a brain that is affected by Autism. That it is not her fault, she was born that way. That we love her and value her and she is who she is. Here I have this disabled child who knows she is disabled and has lots of problems caused by her Autism we are all working so hard to improve. She knows her brain is not working the way “Normal” brains work. How do I explain that they are starving Terri Schiavo to death because she has a damaged brain? People with Autism have a very hard time understanding nuance’s or grey areas. They want the world to be black and white, orderly, in the proper sequence of routine and rules. How do I explain, it is not like Autism. She is not disabled like you; she has no hope, no value. I fumbled something about how Terri’s brain is dead and she really is no longer alive so they have decided to stop feeding her so her body will die. I was anguished; I knew what Lora was thinking: “will they kill me because my brain has Autism?”
I remembered that night after Lora was born on 9-12-86. After holding Lora at the Neonatal Intensive care unit at Presby Hospital and her Mom at the Plano Hospital I got home about Midnight. I went into her room with the fresh pink paint, teddy bear pictures and perfect Jenny Lynn bed. That night when I kneeled down on her bed and made my first ever prayer to God. Me the Agnostic. I asked for Gods help to let Lora live so that one day I could talk with her. I said I would do anything or give anything. That prayer was answered when Lora was 6 years old and she said "Hello Daddy" her first sentence. Unknown to me at the time, this was my first step of a very long journey. A journey of Autism, of forgiveness, of faith and of Grace.
I know what it is like to be Terri Schiavo’s parents. I could never give up; it is my duty, my covenant with my God, my sacred duty to do everything possible to help my Daughter with Autism.
Paul Watson, Past President of ASCC The Autism Society of Collin County http://www.autism-ascc.org/
My name is Andrew. I'm just a few months younger than your daughter. I was born with an autistic spectrum disorder called Asperger's Syndrome, which shares many traits with your daughter's form of classical autism. I won't claim to be as severe as her, but I can definitely empathize with some of the things she's undoubtedly gone through.
I'll try to keep my thoughts as brief as possible. In all honesty, there is a TREMENDOUS difference between autism and a persistent vegetative state. The CAT scans don't lie, I'm afraid. Even a layperson in the field of neurological sciences, such as myself (all those conversations my mom had with various therapists over the years rubbed off) can see that a vast portion of her brain is comprised of an atrophied cavity filled with spinal fluid. It's a fundamental scientific tenet that nerve tissue does not regenerate. Terri Schiavo was beyond any chance of leading any sort of productive life. She felt no happiness, or sadness, or pain, or hunger, or thirst. The parts of her brain that controlled all of those things had deteriorated. She spent fourteen long years as a lifeless husk, whose soul was bound to this earth by the cruel fetters of a feeding tube.
Meanwhile, autistics like your daughter are perfectly capable of feeling emotions. Their brains simply work differently (as opposed to Schiavo, whose brain simply didn't work at all). Schiavo wasn't disabled. She was simply dead inside, her body acting on pure motor reflex.
Michael Schiavo tried for years to get her the best care and therapy possible, and has been horribly misrepresented by protesting fundamentalist bullies and opportunistic GOP bureaucrats who haven't the slightest knowledge of the real circumstances of the situation. If I were ever in a persistent vegetative state, I wouldn't want to be kept alive on a feeding tube with no hope of recovery for fourteen years, and I certainly wouldn't want to become the center of a bonafide three-ring circus.
Best wishes to you and your family.
that part doesn't sound like brain damage. this article is so moving I still fight the reaction that it's fake. the lengths God goes to to teach us.
Absolutely awesome, thank you.
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