health and wellbeing
Coping with profound disability T
he district nurse looked up from the baby girl she was holding. “We’ve never had a handicapped child in the village before”, she said. It was the first signal that life in the future was going to be very different for Mike and Sandra. That was 22 years ago, and although much has changed in the provision of care for profoundly disabled children and adults, it remains a considerable challenge for their parents. Mike and Sandra live in Herstmonceux, in East Sussex, and know that there are also special issues affecting those who live in rural areas.
Amy was brain-damaged at conception and is blind, has very limited mobility and almost no communication ability. For many months after she was born she was poked and probed, and had things stuck on her head. In a dark and confusing world the contrast from the safe warm environment of the womb could hardly have been more extreme. She did little more than scream for the first ten years, and has only learned to smile and giggle since she was seventeen. Even now her ideal environment is the warm, cosy, safe bed or bath. Journeys from
home still distress her deeply, perhaps evoking memories of tests and treatment at hospitals in those early months.
“In a town there are many more resources,” Sandra told me, “but hospitals, special schools, and appropriate day centres are all quite a journey from the village. Specialised transport and fuel generate high costs. We have two super specialised support workers but both live some distance away. Social Services have only recently agreed to include their travel time within their pay. One of them is dependent upon the spasmodic bus service coming to the village and has to pay £22.50 a week out of her wages in order to help us.”
Amy Watson, profoundly disabled and blind, able to stand only with the aid of a walker
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They certainly could not manage without them, or the day centre. Amy needs some kind of interaction at least every ten minutes. Like other parents of profoundly disabled children, Amy’s parents have been relieved that the specialist education
Emma, whose needs inspired the vision of Agape Care Trust, in front of Stage 1 of the centre. Stage 2 will double its size
facilities that are essential have recently been extended until the age of 23. Their home is appropriately adapted for caring for Amy, but the question at the back of the mind is, “What will happen when we are too old to be able to give the loving family care that Amy needs and deserves?” It was a question that another rural couple and parents of a profoundly disabled daughter had also asked.
Patrick and Pam are committed Christians living near Battle and some twelve miles from Mike and Sandra. Their Emma is now 27 and it was when she was six weeks old that they realised something was seriously wrong. A succession of 14-day visits to Great Ormond Street Hospital led to a diagnosis of multiple profound disabilities with learning difficulties. She is wheelchair dependent, with
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