I met a true friend named Charles

I met a true friend named Charles… born in New York /city with Cerebral Palsy.
When I met him he was 42 years old. He lay prone in his wheelchair and had to have both his hands tied down due to the severe, involuntary spastic movements of his arms.

Charles could speak some words that were not only difficult for him to say but also very difficult to understand. He mainly communicated with yes’s and no’s, happy and sad facial expressions. When Charles was having a good day his smile lit up the room and my heart. He enjoyed reading (listening on the computer) about the New York Yankees…. He also like to watch WWF wrestling and wanted to read about current wrestling news.

Charles used a device called a clicker to navigate on the computer. A large button connected to a keyboard using special programs allowed Charles to do spelling and mathematics. The program would ask him to spell or do math (his favorite!), then slowly highlight the answer choices. When the correct answer was highlighted Charles would move his chin to click the button and make his choice. He also worked with his communication device which was very similar, yet progress was slow he enjoyed the freedom of communication.

Charles lived with his elderly mother in an upstairs apartment. He had to be carried upstairs and his wheelchair was left down stairs because it was too big for the small apartment. He spent his time at home in bed.

I quickly became his friend. When he was uncomfortable or his hand were not tied the way he liked them he would find a way to communicate to those he was with, asking them to bring him to me so I could retie his hands and arms for him. We spend much of our time together talking about why he was sad.

Charles wanted to move out of his mother’s home and into a group home, he loved her dearly but as she grew older she was having a harder time caring for him. Family members would come over to help but he felt like a group home with others like him was where he wanted to live. He wanted to go on trips and have friend like the other people he knew with Cerebral Palsy. He wanted a girlfriend, to go out to a movie, go out to eat and other things his friend did. Many people with Cerebral Palsy, even those with supportive families, move out of their home when they become adults, just like anyone else without a disability. They either move on their own with the help of assistants or to a group home.

His mother had Conservatorship of him and did not want him to leave her. Conservatorship of a disabled person… is a person becoming responsible for the collection, preservation and investment of the incapacitated person’s property. They must use the property for the support, care and benefit of the protected individual. A conservator has a duty of loyalty and may not use any of the protected person’s assets for personal benefit. They have total control over their lives and make all decisions for them.

It was a sad fact of Charles life that he would never be able to move, unless his mother passed away. Many people tried to talk her into letting him go to a group home. Telling her it would be good for both of them to enjoy their lives. She would not hear of it… this idea was not an option.

I new Charles for four and a half years and loved him dearly…. He passed away at age 43 in 2008 from heart failure…. I lost a dear friend that day, I will never forget. My life was blessed to have had he wonderful opportunity to become your friend… Rest in Peace Charles….