Diet
Rob needed to do some exercises and we felt that the physio provided by the NHS, once a week, wasn't enough. We called Brainwave which is a charitably run rehabilitation unit for brain damaged children, in Bridgwater not far from Bristol. A man called Carl came to see us, to assess whether Rob would benefit from being enrolled onto their program of patterning exercises. He was the first person who gave us any hope of achieving a better life for our son. Brainwave have found that by doing repetitive exercises over and over again the brain can relearn and teach things that have not been developed. We were accepted onto the program and went to the centre for a two day assessment in June 98 during which we were asked lots of questions and Rob was assessed physically and mentally.
It was a bit stressful as Rob was not very co-operative but they did everything at the centre to help to put us at ease. We came away with a program of exercises for Rob lasting 45 minutes which we should repeat 2 to 3 times a day if possible. The centre told us how to recruit volunteers to help with the exercises and when we came home I drew up a poster and put it in our local church and shops. When we enrolled onto the program our physiotherapist and occupational therapist felt they could no longer visit Robert although I know a lot of NHS physios support the program! I didn't miss them as they never encouraged us and I felt depressed and upset after their visits.
John Dicker
Once enrolled on the program there is a reassessment every 3 to 4 months when progress is monitored, encouragement is given and the exercises are evalutated again. Depending on the progress new ones are introduced and if there have been problems doing some of them these are taken out. Rob has not done as well as lot of children at Brainwave, his absorption problems have not helped. However these exercises do keep his body supple and the patterning may one day work.
Carl & Pat at Brainwave