Reader's Forum 04/00 Newsletter                                                              --    links at bottom of page
In past Readers' Forums we have had letters that inform, encourage, and connect our readers; family stories; and commentary. We invite you to send us your thoughts about programs and services (things that are working or not), your family's experiences, questions, concerns, statements etc.
You can call, e-mail or just send in your contribution to Jo Yoder at 1-800-800-4005, 655-5290, or Jo.Yoder@partoparvt.org

Pattie Jones letter
Ginger Potvin letter
 
My name is Pattie Jones. I am a dedicated mother to my son, Travis Jones. Travis is now 20 years old and still has high spirits and spunk as he fights his life long disease of Duchennes Muscular Dystrophy.
Almost a year ago I put out a letter to our Vermont Government to ask for help with Travis' care. The nursing agencies are unable to fill the much needed hours of children who are 24 hour care. Leaving parents exhausted, frustrated and in tears. I personally am finding it difficult to stay awake and tend to Travis' high tech needs for two or three days straight; even with love as my biggest motivation.
Last weekend (March 18th) I found myself in our local emergency room sicker than I have personally ever experienced with a stomach bug which hit me after 40 hours of no sleep. The nursing agency was unable to cover my hours and I was unable to find last minute respite help.
I know that the Governor and Health Commissioner have received letters from one of our nursing agencies and other organizations about the problem of lack of coverage. They have ideas and plans to help with this crisis to the health of our children and parents. One of the ideas is to allow licensed nurses aids in the home of families on the high tech program. This life threatening issue needs attention NOW.
As a parent and living this issue, I feel like the government is listening but not really understanding the urgency of this problem, nor the lack of time we have in dealing with it. If it is felt that a LNA is not able to do this care because there may be trouble with taking this action, then how can you say it is okay for two parents or in my case one parent do the job by themselves? Does not this become a safety issue? Now you have more than a sick child; you have sick parents, tired beyond all comprehension!
Picture a hospital with a child in intensive care. They decide only one nurse will do the care. Everyone else goes home, no doctors, no aids, no help. That would be bad enough, but now tell that nurse no one will be in to relieve her for 24hrs., 48hrs, or maybe three days. When you look at that scenario you know that that is crazy. It would never happen in Vermont. Yet it is happening everyday in some 200 homes in our beautiful state. Only our legislature can stop this, listen to our pleas, this is serious.
From my first letter to politicians and newspapers some things have changed; I now have a supportive nursing agency and the help from council on aging. My basic plea has not changed except that our time is slowly running out. I would like to end this letter with the same paragraph from my letter written last July.
"I have given my whole life to Travis, and I will continue to do so. After all these years, after all the joy, after all the sorrow we both deserve to spend this time with peace, love, courage, pride and mostly dignity." 
That is not possible if his mother is lying sound asleep in her own vomit. I want to be awake and alive and love him all the way to his death and far beyond! Let this be the most important battle that we have ever won and give this to us.
Pattie Jones

and another letter sent in by Ginger Potvin, she sent a Letter to the Editor in the Rutland Herald and would like us to post it here:
 
To Whom It May Concern:
     I was inspired to write the letter to the editor, printed below, after speaking to a home daycare provider.-- 
I was trying to find a daycare, for a couple of hours three days a week, for my child with special needs.  The daycare provider kept insisting on calling my beautiful son "handicapped" several times; even after I requested that she use the term "special needs" rather than "handicap".  She also insisted that no one wishes to care for children with handicaps, even the mild cases.  While I understood her level of thinking, I felt like my heart was crushed, because I do not view my son as handicapped although having special needs.  He is a beautiful child with a beautiful spirit.  He is like any other child, despite his challenges.  He is my teacher and mentor.  
     I sat down, wrote her a letter, explaining how I really felt.  The lay out of the letter came out wonderfully.  I sent the letter to her.  She called me back and thanked me for helping her understand.  Many others call my son handicapped as well.  It hurts.  I know other individuals and parents of children with special needs feel as I do.  
    I am sending you the letter hoping that you would submit it in your newsletter.  Something I feel will enlighten the hearts of many.
Thank You.
Sincerely, Ginger Potvin, Mother and advocate of children with special needs

Labeling Creates The Handicaps
Letter to the Editor, reprinted from The Herald of Randolph
   As a mother of a child with special needs, I have been provided many valuable lessons.  These lessons have been invaluable, penetrating my soul with great truth.  I feel this strong desire to share some of my lessons with many.
I truly view my child as being no different from any other child.  I love him.  I have the same desires and hopes.  I envision my child with special needs as having every opportunity as any child would in this lifetime.
   Why?  It is the unconditional love I hold for him.  Yes, I feel pain.  I grieve.  I worry, I'm concerned.  Somehow the unconditional love allows me to understand and accept this as how my son is supposed to be.
   He is here on this earth with a very important mission- just as we all are.  We all are given challenges to overcome, face, cope with, strengthen.  Because I feel this truthfully, the gut-wrenching emotions seem to subside for the most part.  I am able to come to grips with what seems horrible to many.
Truly, his condition is not horrible, it is not sad, it is only what I make of it.  I choose to bathe in the gifts my son has to offer.  You see, love sees no imperfections.  Love only loves.
   I have come to understand it is the condition "labeled", that is more devastating to a parent, or person with special needs, than it is the initial condition itself.  Society unintentionally attacks individuals viciously by labeling conditions as a handicap, or as a disability.
I have grown to understand that almost no child has a handicap.  If children with special needs are handicapped, it would be fair to say we are all handicapped.  You see, every one of us faces some kind of challenge.  We all have a deficit, a weakness.  We all have strengths, too.
   Absolutely none of us are perfect.  Can you truly call a deaf person deaf, when they have never know any difference?  I ask you to think about my questions carefully because the answers offer a beautiful truth.  A truth that cannot be fully appreciated unless our eyes are fully open to that truth, that insight.
I have grown to understand labeling is a form of prejudice.  Too many of us are quick to judge without really knowing the other side of the story.  Our false assumptions lead to labeling, stereotyping, and forming unnecessary prejudices.  Prejudice, really, defines the fear of the unknown.  Prejudice in truth is ignorance.
   Take this time to think for a moment.  Suppose someone labeled your child unfairly.  How would it make you feel?  Would you feel hurt?  Would you disagree?  You see, I, like you, need my child to be viewed, treated, and respected the same as you expect your child to be treated.  My son does not deserve to be treated as different.  He does not deserve to be punished for something he cannot help having- mild cerebral palsy.
You see, in truth, all of us have some form of special need.  We all have challenges.  We all have gifts.  We are all equal under the eyes of God.
   Please be sensitive to the labels traditionally used.  We parents truly prefer "special needs."

Spring 2000 –
From Our Director (Cover Page)
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