Living and laughing with a disability - cerebral palsy; ordinary life, extraordinary circumstances.

Monday, November 24, 2008

It happened again...

In 1989, I wrote a column for the Oregonian about a grandpa who took his two year old grandson, who had significant disabilities, for a ride in the car. Grandpa took the boys life and his own. For whatever reason, grandpa did not see much hope for the boy.

I was eight months old when doctors diagnosed me with cerebral palsy. Doctors did not know what hope to give my mom as to what my life would be like.

At first, when I read this story out of Wisconsin, I saw similarities with the story I wrote about in 1989. Instead of a grandpa taking the life of his two-year-old grandson and his own, this was a father taking the life of his twelve year old high needs, severely disabled son.

This has been a difficult post for me to write. Back in 1989 when I wrote about the grandpa and the two year old, I had a three inch news brief to go off. Without the internet around to let me dig, I made assumptions. The biggest was thinking that grandpa took his grandson's life and his own to save family and society the hassle. I related to the story that I was once that two year old with disabilities and an unsure future.

Before I write about Ryan and Kyle Dutter, I just want to say that I have no doubt the grandpa loved his grandson and wanted the best for him.

Ryan Dutter loved his son, Kyle. He created a website about his son.


There is much more to this story than I will ever grasp.  Unemployment, bankruptcy, and custody issues...not really our  business to consider.

Take a look at this page from the website Ryan made for Kyle.  It is a lengthy list of specialists who were caring for Kyle's needs:
Psychiatrist – (behaviors, issues still 
ongoing, but significantly better)
Endocrinologist- (puberty, monthly shot being 
administered to control heavy onset of 
puberty naturally produced at my age)
Ear-Nose-Throat-(drooling, minor surgery 
completed..no more drooling!!!)
Pediatrician- (now have one, and this one 
specializes in Autism)
Orthopedist-(Half leg braces for feet and legs 
being used to help me walk better)
Neurologist- (Seizures under control at 
present time)
Dentist- (minor surgery completed, all dental 
problems solved)
Sleep Study- (sleeps 14 hours a day with 
naps included, hoping to know if I am not 
obtaining REM sleep)
Occupational therapy- (helping him move, 
especially lower body so there is no falling or 
tripping.  Right foot is severely turned inward.  
This is in addition to his school therapies)
Rehabilitation M.D.-(Oversees coordination 
of all my care)


There are too many details about this tragedy that I don't feel qualified to comment on  any of the speicifics here.

In general, high needs kids should be the responsibility of society, the "village" if you will.  Too much or too little money should not prevent families from having a child's high needs met.

When I use to process applications for medical assistance for the state, I will never forget talking to a lady who had a teenage daughter with cerebral palsy.  Mom was a few bucks over income from qualifying for assistance.  I felt so bad that I apologized to the lady.  She was crying, but she said "It's not your fault, sir."  I still felt bad.

I know there is a reason for eligibility specialist who make these difficult decisions.   We don't have unlimited resources to cover all the needs that exist.  

If we can bankroll the Iraq war, Wall Street, Citibank, Detroit automakers (?), it seems to me that high needs kids and their families deserve more support from society -- medical coverage, 
case management, whatever support is needed.

Why don't we honor Kyle Dutter by making a law that provides support for high needs kids and their family regardless of their means?

We need a Kyle Dutter law.

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