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George's Story - Planning for the Future

Written by: Michael S. True, M.Ed

This article is copy protected and should only be reproduced by permission of the author. For information contact me at: .

     George, (not his real name), is a 43 year-old man with Down Syndrome. He was the youngest of three children. His mother was in her forties when George was born. His parents were heart-broken when the doctors told them that their newborn son would be severely retarded for the rest of his life. Despite this, they loved him with all their heart.

     George grew up on a farm in Southern Indiana. He spent much of his free time as a child playing with his dog, Lassie, watching the dairy cows graze in a nearby field, and enjoying his solitary time outdoors. When he was six, it was time to begin school. This did not go over well with George. He didn't like a lot of kids running around, shouting, strange adults making him sit in one place for hours, or the fact that he couldn't run around outside with his shoes off.

     George had problems in school. As the years went on he became increasingly more aggressive towards his classmates and teachers. He was labeled a problem student, even among a roomful of students with special needs. His teachers began calling his parents to take him home. George's behavior was not acceptable at school. He refused to follow directions. He would not participate in his work. All he wanted to do was go home and play with his dog. And, as fate would have it, he got to do this more and more often. George had learned that throwing a chair across the room was an instant ticket back to the farm.

     George's parents were upset by the problems he was having at school. They went to the meetings. They shrugged their shoulders noting that he was not a problem at home, except maybe at dinner time when it was hard to keep him out of the kitchen. His teachers were not impressed with their lack of insight into the inappropriate behaviors he was exhibiting at school. They suspected that there was no discipline in the home. No one had a solution.

     Actually, George's mother wondered why he was in school. She and her husband did not have much education themselves. They grew up on farms. They learned to milk cows, bail hay, work the garden, can fresh fruits and vegetables, and butcher livestock for meat. Their idea of a good time was watching the stars at night from their rocking chairs on the front porch on warm summer evenings. Besides, George was learning to help around the farm. If he was watched closely he could use a hoe, carry a bucket, sweep the porch. They were actually surprised at the way he followed them around and tried to imitate their daily activities. They encouraged him and he learned.

     Before George got to high school age, he was spending more time at home than on the school playground, during the school year. His teachers seemed almost relieved when he acted out and was sent back home after only a few days since his last expulsion. His aggression was escalating. He kicked holes in the walls, broke windows, hit and pushed other students, bit the teacher, and kept throwing those chairs across the room. One day he hit a classmate with one of the chairs, leaving a deep gash across her leg. The girl's parents were furious. They threatened to sue the school. George was expelled permanently.

     George turned 22 years old in 1959. There were no vocational training programs for the severely handicapped, no group-homes. The only alternative to caring for a young adult in the home was institutional care. George's parents never considered this, it would not happen to their son. He would stay on the farm. George's brother and sister finished high school and eventually moved away from the farm. Soon they had their own families to consider. George was depressed for a long time after they left. It just wasn't the same. They came to visit and he began to start yelling at them to stay when they readied to leave. They promised to visit, but the visits became less frequent because of their reluctance to see him get so upset.

     I met George in 1980. Both of his parents were elderly and ill. The farm had been sold and they were now residents of a local nursing home. George's dog had died long ago. In fact, there were two other Lassies that came and went over the years. George had been staying with the family of his older brother. But there were problems. He kept wandering away from the home. He kept talking about the farm. He insisted on seeing his parents and Lassie, and going back to the farm. He stayed up all night and yelled, "I wanna go home!" This was not occasionally. It was constantly.

     I was working as a services coordinator at a company which was pioneering Intermediate Care Facilities, (group-home), development in Indiana. We were placing persons from institutions, nursing homes, and private residences. George was brought to one of our homes for a visit. It did not go well. He cried when his brother left and spent the next three days trying to walk out the front door with his suitcase. He was not happy.

     However, there were not too many alternatives for George. Deinstitutionalization was big in Indiana. Few were being placed in such settings. State and Federal monies were being funneled into this new community integration movement. In one sense, George was a victim of the times. George could not have known that he was, himself, a pioneer. He was miserable. Even his aggressive behavior was not helping him return to his beloved farm. The closest grouphome to the farm was 70 miles away. This was where George was "placed".

     George kept his suitcase by the front door for nearly two months after he moved into the home. We tried to put his personal belongings into a single room, hoping that he would feel less threatened if he was not sharing his sleeping quarters. Everyday, when he came home from the day program he went straight to his room, packed everything and went to the front door. We tried to engage him in every activity we could think of at the time. His favorite time was dinner. He sat at the dining room table on the kitchen side when the time neared and watched the other clients and staff preparing the meal. This was the calmest time of the day. After the meal, he returned to his post at the door, staring out into the night and calling for Lassie and his mother and father. He stood there all night, night after night.

     I spent hours with him, trying to make him feel at home. His only words to me, or any other staff person were, "Go Away!" Our first success was when we got him to sleep on the couch in the front room. We had let him pick out his own blanket at K-Mart. He actually dressed in his pajamas and fell asleep sitting up.

     Other small steps in his transition included getting him to set the table before meals. We found out that he liked to draw with markers and work simple puzzles. We added this to his daily routine. Finally, several months later, he actually allowed us to put pictures up on the wall in his bedroom. He was using it as a changing room by then and allowed his clothes to be stored in the dresser and closet.

     We had developed a plan to frequently rearrange the furniture, slowly moving the couch closer to the room where we wanted him to sleep. Finally, nearly six months later, he started sleeping in his own room. It was a triumph for us. I think it must have felt like a reluctant surrender to him. I did, eventually see him smile from time to time before I left that job.

     I will never forget the pain he must have felt in that transition. It gave me a message to pass on to other parents who would eventually have to provide for their disabled sons and daughters. If nothing else was learned, encouraging independence and self-sufficiency at a young age is a critical matter. Planning for the future must take place. Opportunities for spending time away from home can include: school, summer camps, church activities, overnight visits with other family members, and time with friends, to name a few. They are never too young or need to be over-protected to such an extent that coping with change is not considered. It is a healthy part of life.

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