Tuesday, November 23, 2010

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A Little Sister, Older Than Me

Our guest blogger today presents a different view on living with special needs. Having a family member with mental challenges fifty years ago was a very different experience than today. Karen of "Special Needs Abu Dhabi" writes a beautiful piece that shows the love she has for and has received from her sister who was born with mental retardation in 1941.

This is an edited excerpt. The full story can be read here.

My sister, Gretta was 18 years old when I was born in 1959. She was number 3 out of 5 children, when I became number 6. Gretta is the first person I ever knew with special needs.

Gretta was born with what was then called mental retardation. To just look at her -- at 20, 30, 40 years of age -- you wouldn't know this about her. I thought she was beautiful. She had flawless skin, a beautiful smile, lovely dark brown hair with hints of auburn, a sweet personality, and the most infectious laugh of anyone I've ever known. Intellectually, Gretta never grew beyond the age of 4 or 5 years old. She attended a special education class at elementary school for a brief period but had to withdraw because she had seizures, which the teacher was not able to handle. Gretta did learn to print the alphabet, her name, and other simple words, as well as simple reading. Her speech was very easy to understand compared to some of her friends.

Gretta suffered from hard seizures, which were preceded by her head drawing down and to the left and her left arm and leg drawing inward. My mom believed that Gretta's mood brought on the seizures (which I've since learned was not possible*), because she would sometimes be mean or cry a lot prior to a seizure. I remember trying so hard to cheer her up -- thinking that maybe I could keep it from happening. Watching her seizures was very frightening. My mom and I, as well as my older sister, and family and friends -- whoever happened to be there at the time -- would try our best to help her through them. We would rub her back, legs and arms, talk softly and reassuringly to her, and try to make sure she didn't hurt herself.

Years after I had grown up and my father had passed away, my mother decided to move Gretta from the residential school she'd been in to a group home nearer to where she lived. Her seizures were under better control with medication and she seemed ready to participate in a more independent environment. The residents helped to cook and care for the house and five days a week they were taken in a bus to various locations for work. (As I recall, Gretta's work involved putting gaskets together and boxing them.) At work, Gretta met Donald. Donald was also mentally retarded but lived at home with his mother. Donald dressed in cowboy shirts and double-knit slacks and spoke with a very slow southern drawl. He was a true southern gentleman and treated Gretta like she was a queen. He would often visit her at the group home, where they would watch TV together and hold hands.

Then, one day Gretta fell down the stairs and ended up in the hospital. She never fully recovered from the fall, and was never able to walk again. It was believed that the fall was caused by a seizure. Gretta moved back home where Mom took over her care with some help from a nurse who would come by a few hours a week. But our mother was getting older and it became too difficult, physically, for her to care for Gretta, so she ultimately moved to a nursing home where she would be treated with respect and loving care.

Gretta has a big fan club of nurse's aids at the nursing home where she now lives. She has a reputation for being very sweet and having the nicest manners. She has very strong arms and will help the aids by holding onto the rails on her bed when they come to change her bedding under her. These strong arms also give wonderful hugs. Just the other day, she told one of the aids, "You make me so happy!"

*A note from Bubbe: The reverse was probably true; the start of the seizure was likely causing this "bad mood".

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