Mark's experiences in day centres

day centres

Mark was born in 1980. He was starved of oxygen during his birth, which resulted in very severe Cerebral Palsy. His parents had no more children, and devoted their lives to his care. Mark’s mother gave up her career to look after him.Mark attended a special school, and after leaving school he was taken to a social services day centre five days a week. His intelligence was obvious to people who knew him very well, and his parents often told tales of how he reacted to certain events, like watching TV comedy shows, Mark always showed that he was amused by the jokes.    

Communication was a huge issue for Mark. Unable to speak, or make any but the slightest sounds, his only controllable muscles were in his eyelids and eyes. His eyes were very expressive, and if people had the time to sit and speak to him, he could show that he was listening and understanding what was said to him. His parents said that they could understand everything that Mark wanted.

At the day centre (very short staffed!), Mark was often just left sitting in his wheelchair, sometimes for hours, without anyone talking to him. More than once, he was left sitting in the direct sunlight, wearing shorts, and had very severe burns as a result. Once, while being pushed around by staff, his left foot got caught, and was broken in several places. Mark had been unable to show that he was in pain or danger. To control Mark’s severe spasms he was given muscle relaxing medicine, and sedatives, in increasingly high doses. Much of the day he spent asleep.

Friends had seen electronic speech aids, and told his parents that they thought he might be able to use one with his eyes. His parents had been told by professionals in the past that nothing could be done to help their son, which they just accepted, and refused to believe that he would ever be able to use a communication aid. This family lived in an area which had a very limited service in adult speech therapy, and did not fund adult communication aids at all!

Occasionally, Mark attended respite care for a few weeks, while his parents had a holiday alone. He hated this time, as the staff were constantly changing, and nobody in the care home understood his communication. He felt very lost and alone there, and longed for his dad to return to take him home.

Sadly, on one occasion, his dad and mum were killed in an accident, while abroad, and never returned to collect their son. Mark was permanently placed in a care home for elderly adults, where he knew nobody.

With AAC Mark could have made friends and had some choices in his life.

Things you may want to look into: electronic speech aids, eye gaze, AAC choices

December 2012