Dear Friends,

I have a very personal story that I want to share with all of you about an incredible life lesson I experienced a few months ago.  In July of 2008, I suffered a stroke.  As the one year anniversary nears, I would like to share my humbling story--one that has forever changed my life.  I now have intimate knowledge of one being unable to communicate. That day I was medi-flighted out of my hometown in Holdenville, to a hospital in an Oklahoma metropolitan area.  During this time, I was conscious and able to hear everything that was said to and about me, although I was unable to speak or respond.  Following are some insights gained through this experience which have forever changed my attitude regarding disabilities:

On this beautiful summer day, I had spent my time working in my garden and getting ready for a much needed vacation.  I was dressed in my old gardening clothes, barefoot (dirty feet of course), and did not have the opportunity to shower or dress before I had the stroke. In Holdenville, everyone knows me; in the metropolitan hospital, I was unknown.  I am certain that I appeared indigent and uneducated.  From what I heard the nurses saying about me, that is exactly how I was perceived.  I was judged by my appearance, and I overheard several negative comments, as well as several nurses’ personal relationship issues.  How frustrating to know that they were being rude and unprofessional and I was powerless!  The moral of the story is: Never say anything in front of people or assume they do not understand. This certainly would include children with disabilities.

Although I could not speak, I was cognitively aware.  When I would try to speak, no one could understand me.   I was not given anything to eat or drink until I was seen by a Speech Language Pathologist for a swallowing test. Can you imagine…My mouth is dry, almost parched, and I am unable to ask for water and cannot write this down as my right hand is paralyzed?  At this point I knew indeed why children with disabilities could be in need of a Positive Behavior Intervention Plan.  As I was starting to plot my revenge, I realized the one thing I did have was my vision.   I studied faces, more as a retaliatory issue than anything.  I remember laying on the gurney thinking what I was going to do when I was released…You can only imagine what was on my mind, as a mother of 2 sons with disabilities and now as a citizen with a disability.  I soon found the retaliation I had planned was not nearly as important as the life lesson I had learned. 

Fortunately, I did recover after a few days. However, my insight into the world of disabilities will be forever changed. Communication has to be the top reason for behavior issues. I admit , I had a few tantrums and felt there was validity in doing so.  Only a few know what it was like for those few days. The rest of us can only imagine.  The old saying is true. “Don’t judge me until you have walked a mile in my shoes”. I hope to continue to share my story – not for sympathy but for compassion and empathy regarding children with disabilities.  My stroke lasted 48 hours. I cannot imagine not being able to communicate for a lifetime.

Respectfully,
Sharon House, Executive Director, Oklahoma Parents Center