Recently I had to go to the Stony Brook Dental School because my daughter needed a checkup and cleaning for her teeth. She is incapable of brushing her teeth or cleaning them herself, and NYS laws state that a person with developmental disabilities cannot be restrained in any manner. However, she can be restrained at the dental clinic to protect her, in a full body restraint but not to hold her and brush her teeth at her home.
Seeing my child be put through a procedure that frightens her, upsets her, makes her bleed and seem desperate; makes me sick, troubled and guilty that I make her do that. I have no choice, if she has poor gums, her health could be jeopardized and heart and eventually her life.
Having a child with disabilities can be a daunting responsibility. Her life is in my wife and my hands, her finances and personal information are important, but health is even more so. She can’t tell us when she doesn’t feel well, and if something is bothering her, we have to look for a clue or two, or guess.
But it was very upsetting seeing a child of yours fully tied down to a padded board, feet and legs strapped, legs, arms strapped to her body and chest all strapped down, someone cradling your head and sticking these devices in your mouth to hold it open than sticking tools in to play around with your teeth and hurt you while they are at it, all the while, you don’t know why they are doing this to you, or if it will end.
The process is so disturbing that I needed to be there for her with all those strangers, so she wouldn’t be alone. Try to comfort someone who can’t express herself, while she holds tightly to your hand, squeezing it and not letting go, while you stroke her arm reassuringly.
Being a parent of a disabled child can be a very lonely feeling in the general public. I pushed her into the clinic in her wheel chair, and as I entered the building, people just stared at her, and when I went through the process I felt like a freak, because people looked at us as different. You become a handicapped father when that happens, and alienation overcomes you as you must explain to them what she can and can’t do, the look of questioning people about her makes you angry. These are all good people doing their jobs, but they don’t even look at her when they speak about her to me. They might as well be asking me about the chair I just got up from.
5 comments:
There's a saying that goes: God gives us only as much as we can handle. I don't know how you and Ellen find the strength to do what must be done for your daughter, but God certainly pur her in the right hands. I believe that deep down, your daughter knows she is in a family who loves her. May God bless all of you.
All of what Jim said is so true. Unfortunately we cannot educate the public on their ignorance or misunderstanding in areas like this. This is their handicap. I guess this is where our understanding of them comes in. We can try to make them more knowledgeable on matters like this. Ellen is a very lucky girl to have such caring, understanding, and loving parents.
Carol
Yes Ellen is indeed lucky. As the fellow parent of a special needs child, I know there are times when you just want to scream, "What the F@%#$ are you looking at?"
You are lucky to be one of those great people known as a "Dad"! Keep up the good work!
Roger Hyde ("Dad" to TLC!)
thank you, all
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