A busy day, but enjoyable. First we went to Matthew’s sports day, at Crownbridge School. It was great to see children of all abilities taking part and enjoying the races – it really was the taking part that mattered, rather than winning, although the wins were celebrated too.
Mr Scales and all the staff made sure that everyone got a chance to take part, and supported the ones that needed a bit of extra help or encouragement. Matthew? Well, he was disappointed not to do well in his first race – he was the only one in a power chair so he should have romped home, but it seems that someone had regulated his speed! He did better in his second race, though I’m not sure if he came in first, second or third! He was much happier though, and then it was off to Cardiff to lobby the Welsh Assembly.
We missed the gathering on the steps of the Senedd, but were in time to hear about the efforts of
practitioners in Wales to develop a more integrated service, and were of course particularly interested to hear about the problems and solutions for those undergoing transition, and to be reassured that Matthew is still part of Action Duchenne’s Takin’ Charge project, and will be able to fully participate next year, when some of the activities will focus on music technology.
Matthew’s transition has been complicated by his mother, who at first was agreeable to him going to live with Dad, which is what he said he wanted to do, then decided to fight the move in the courts, where, amazingly, in spite of all the evidence to the contrary, it was decided that he would face too much disruption if he moved schools and lost contact with the carers who go in to put him to bed (the same carers who dislocated his hip by moving him by his legs). Remember, this is a 17-year-old lad who will have to face change when he reaches the age of 19 and will have to leave Crownbridge.
Takin’ Charge will be so helpful to him. He has started to speak up for himself so much more – incredibly, it all seemed to start when he had his tonsils out and evidently found it easier to speak! Since then there has been no stopping him at times. He is very clear when speaking to friends that he intends to live with his Dad as soon as possible, but clearly he doesn’t want to upset his mum so he becomes less assertive in that environment, leading some people to think that he has changed his mind.
We are reliably informed that once he reaches the age of 18 (just a few more weeks) he will be free to choose where he lives and what he does with his life, so look out girls in Weston Super Mare, Matthew is on his way!
jannettet 