The journey goes on

Stephen attached himself to us and settled in to make a new life where he would be the king pin. Revelling in his new-found freedom from the restraints of sharing a home with others he set about showing us how happy he was. Despite his many disabilities he was, by nature, a happy child, full of energy. We never tired of watching him in order to familiarise ourselves with his personality and his body language. There was a lot to learn about him and a lot to do for him. He attended the same school that Gary went to so the staff knew us and we knew them. One reason for placing Stephen with us was the good reputation of the school. Apart from our personal suitability, other things taken into account were, the spaciousness of our house and garden, the playing field at the end of our street, the beach down the road and good recreational facilities in the area. Stephen loves going swimming, bowling and to rebound therapy. He also loved the toy library, before he got too old for it, and the soft play area.

But it wasn’t all fun and games. Until he left school at nineteen whatever he needed in the way of aids and adaptations, special footwear and safety headgear, was supplied automatically. But afterwards everything had to be applied for and the reasons explained. Where previously the school had helped us we now had to fight for everything alone. It was really hard as Stephen was maturing, growing in height and strength and realising his power to object to things he didn’t want to do. Although he is of slight build he is physically strong. Jack and I, approaching retirement age, were finding the physical side of caring a strain and becoming short on patience with the support services. We began to rely more heavily on local voluntary services which had been a great help since 1987 when Stephen had been with us for only two years. At that time I had been interested to hear that a new group for carers was being set up and I went along to the inaugural meeting to find out more. I heard how some parents had joined forces to campaign for local facilities that would enable their children to live fuller lives in their own community. They wrote to the newspapers, lobbied the local MP and councillors, even gave interviews on TV. A  meeting with the Director of Social Services and members of the Health Authority concluded that it would be highly desirable if a Carers’ Federation could be established, capable of representing the views of carers and parents of people with learning disabilities. I didn’t need much persuasion to join because I had experienced the same difficulties as other parents when Gary was alive and I needed to do all in my power to help Stephen progress.

The Carers’ Federation challenged issues around health and social support needs. It was influential in bringing about many changes for the better, went from strength to strength, becoming a registered charity, then a company limited by guarantee with a new name, The Learning Disabilities Federation, commonly known as the LDF. In her 2006 annual report Mrs Gladys Charlton explained how she had been chair since 1987 throughout the many changes the Federation had gone through and now the time had come for her to step down. She quoted ‘mighty oaks from little acorns grow’ and said “that is exactly what I have seen with the LDF growing into the strong, caring, supportive professional organisation it is today. From its humble beginnings as a small self-help group set up by a handful of desperate parents the LDF has brought about many changes and improvements to the quality of life for people with learning disabilities and their families. The charity’s object and its principle activity continues to be that of alleviating the conditions of life among people who are caring or have cared for people with learning disabilities at home, and who are in necessitous circumstances. The LDF works directly with and for people with learning disabilities and continues to advance public education concerning caring amongst carers and the general public.” She said, “The future looks bright for the LDF. We know our past, celebrate our present and look forward to the future.”

I say, Good Luck Gladys. Enjoy a well-deserved retirement. I retired three years ago and now enjoy being able to do what I want , when I want. Read on to discover how retirement has worked out for Jack and me.

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Page 6

The ups and downs of life with stephen