A Family's Story
Published June 03, 2009 @ 12:33AM PT
A family, with two parents and a son.
The son is disabled. The family is very close.
I'm not referring specifically to Jim and Charlie and me though those three sentences are all true for our "tight team of three."
I'm writing about Neil and Kazumi Puttick, who lived in the UK with their 5-year-old son, Sam. At 18 months old, Sam was seriously injured in a car accident. His spinal cord was severed and he was paralyzed from the neck down. He needed 24-hour-care; his father had left his job and the family lived in a farmhouse that had been specially converted (with insurance money from the accident) to accommodate Sam's many needs. Today's Times notes that Sam was attending school and was a "regular visitor to the country park and enjoyed following the woodland trails in his wheelchair, visiting orphaned lambs and eating chocolate cake in the tearooms." Back in January, his parents had described him on a blog as "'the happiest boy in the world.'" Photographs on a website showed a smiling Sam celebrating his 5th birthday.
Sam died last Friday of pneumococcal meningitis; he had been admitted to the hospital last Tuesday. After doctors said that there was "no hope of recovery," he was discharged to "end his life at home."
This is in itself is too sad. But then, the Times reports:
Police believe that Mr and Mrs Puttick, overcome with grief, killed themselves by jumping off the cliffs [of Beachy Head] at on Sunday night.
Two backpacks were found beside the bodies, one containing Sam, the other some toys.
I have only heard about Sam and his parents yesterday when I read about their deaths and I know little beyond what I've read in the Times and other news sources, and on their Stuff4Sam website (the Putticks had set this site up to raise funds for equipment for Sam).
Sam's disabilities were far greater than that of my son, who can do many things that Sam was left unable to do after the car accident. Yet as the parent of a son with disabilities, I do feel that bond.
Charlie requires intensive care of a different sort. He can never be left alone. He's the center of Jim's and my life. Sure it is not easy and we've had to change everything in our lives to provide him with what he needs. We love being together and doing things together, all three of us.
Charlie has plenty of challenges. He's had a string of good days after a quite long spate of really tough ones, in the midst of which our school district again starting talking to us about a "temporary residential placement and enjoining us to go look at a place and put Charlie's name on a waiting list. We've been working more and more on integrating schedulesschedues throughout all of Charlie's day and perhaps it's the sense of order from these that have helped. Or something else.
Charlie has been in a peaceful easy feeling way, and despite quite a bit of commotion yesterday including a lot of loud screaming and splashing at the pool (a bunch of other kids; we were in the lap lane) and an expected trip to another town to pick up Jim and a friend at the train station (New Jersey Transit's equipment "lost engine power" in the Meadowlands). The swimming and the driving round Jersey were the sort of little adventures the three of us have plenty of, and that have been the basis for some of my happiest memories. They are really what life is all about.
In other words, life with my son anywhere but with Jim and me----that is not the story of our family.
In memoriam Sam and to his parents, Neil and Kazumi.
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Comments (8)
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Kristina is a Classics professor in Jersey City, New Jersey, a blogger (formerly at AutismVox), a translator (of Virgil), and an advocate every day for her son, Charlie.
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Sam died last Friday of pneumococcal meningitis; he had been admitted to the hospital last Tuesday. After doctors said that there was "no hope of recovery," he was discharged to "end his life at home."
It sounds very much as if Sam, and indirectly his parents, were a victim of "futile care theory". This is a concept that is entrenched in most health care systems where care is provided by the state, and will almost certainly be incorporated into any such system introduced in the U.S. Basically, "futile care theory" places values on peoples' lives, and the lives of the disabled are not valued much at all. So when someone who is disabled gets a potentially curable infection, they are left to die (because treating them would use too many societal resources).
For more on this, and how it is starting to make inroads into the U.S. health care system, see here for an article from a few years ago.
Joe
Posted by Joseph Kras on 06/03/2009 @ 07:29AM PT
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You make an interesting point, Joe.
All I know is that having discussions with your doctor about the type of care you want and asking questions about the doctor's point of view will help you decide to keep the doctor or find someone else that is more supportive of your needs.
In the hospital the doctor writes orders. Staff has to follow those orders. In the hospital it is the doctor who is in control of your care. No one else has that power.
Posted by L I on 06/03/2009 @ 07:45AM PT
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And Dora's post from last week comes very much to mind:
http://autism.change.org/blog/view/developmentally_disabled_patients_denied_care_for_treatable_illness
Thank you, Joe, for that link, I am reading it right now.
Posted by Kristina Chew on 06/03/2009 @ 08:02AM PT
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@"life with my son anywhere but with Jim and me----that is not the story of our family." That is a hard situation. All I can think of is that Charlie will always be in your heart. Perhaps there is something Charlie can wear that will keep you guys in his heart. If you get to visit you will notice if Charlie is improving or doing worse. Looking at Charlie tells you how well the placement is working for him. Make sure to pick a place where the kids look happy.
I think the children like Sam in these situations teach us so much. They try to do normal things in between difficult moments. They smile and try to enjoy the life they are given even if some rare genetic disease gives them months or a few short years. They actually are a role model for the rest of us on how to live life.
I have taken care of people like Sam. I have also met the families who taught me so much. It really is about the attitude of people toward situations. Making a decision (regardless of the situation) that you are going to live in the present moment and be happy as best you can. Cancer survivors have tried to share this message with the rest of us.
These were happier families than me because they made a choice about their lives at the start of the journey. Seeing them over the years these families laughed and kept looking young. They had time for the other children in the family. Life was never on hold for them. Although they did have respite care to help them out.
As a child the choice was made for me by my parents to care for my brother. I felt overwhelmed and struggled because at 8 years old I didn't know how to care for a mentally retarded brother on my own. When I had my son I just instantly took care of him without thinking about the choices to be made.
I met families like me too. Stress, no laughter, serious lives. I look 10 years older than other people my age. Some of these families changed to happier families when we talked about caretaking and the effects of stress on aging. The moms were motivated to change their attitude because having aging and stress didn't change their situation.
Can't locate the research mentioned in Time Magazine about mom's aging 8-10 years when caring for an autistic child. Scientific basis is still the same.
a lesson on aging to heed: relieve stress An article in today's Washington Post (Our President Our Selves: If Obama Grows Old Before His Time, Stressed-Out Cell Tips Might Be to Blame, Jan. 19, 2009), points up the importance of taking time for yourself to relieve stress. The article cites a study from the University of California at San Francisco that published results showing that mothers who cared for a chronically ill child appeared to be about 13 years older than mothers raising a healthy child.
The culprit that accelerated the aging process: telomeres, which cover the tips of cells. Each time a cell divides, telomeres shorten until they are too short for the cell to divide, which means the cell dies. Cell death can cause or contribute to some age-related diseases, such as certain cancers. Another factor blamed for shortening telomeres includes smoking.
PSYCHOSOCIAL SUPPORT FOR FAMILIES OF
CHILDREN WITH AUTISM
Ashum Gupta* Nidhi Singhal**
http://www.aifo.it/english/resources/online/apdrj/apdrj205/autism.pdf
There is research that says The parent's ability to accept the child difficulties influences the way the family functions. Involving the parents by providing information and making them an integral part of the program enhances the child's skills and the parent feelings of competency in dealing with the child.
So how do you choose to live life with your autistic child? That choice will effect your family's functioning, stress level and aging of both parents. It will affect all of your children. Choose what works for you.
Posted by L I on 06/03/2009 @ 07:34AM PT
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I feel compelled to respond to Joe's comment. I remember reading three years ago about the "futile care" case in Texas which is featured in the National Review article he links to. It is a truly horrifying story and should not be forgotten. But I don't think it has much to do with whether or not "care is provided by the state."
The proof is of course that the United States is the only industrialized country without national health care, and as the NRO article shows, "futile care" (that's a little double-speak, isn't it, it should probably be "futile abdication") is here already.
Every year, more than 18,000 Americans die because they are uninsured and can't get proper health care: www.usatoday.com/news/health/healthcare/2002-05-22-insurance-deaths.htm That's a lot of people we don't value enough to take care of and whom we're leaving to die. Countries with national health care don't have that statistic.
Posted by Barbara Barbara on 06/03/2009 @ 09:37AM PT
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My heart aches reading this story. Our glasses remain half full, even though there are times of despair.
Thanks for sharing this 'reality bite'. I need it some times.
xR
Posted by Robin Hausman Morris on 06/03/2009 @ 10:33AM PT
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That is heartbreaking. Yet, I can understand that level of grief. I would not want to go on living if my children died. God love them, that's just horrible.
Posted by ASD momNC on 06/03/2009 @ 12:30PM PT
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I see so much of ourselves in this family. It could be us. I can't stop thinking about them, their decision to do this in their final hours of deepest despair. This is just too heartbreaking. I only find solace in believing that they continue to be united as a family in spirit.
Posted by Jasmine Taketa-Tran on 06/03/2009 @ 10:00PM PT
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