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Aiming High: Following Jigsaw4u's consultation
Published on March 10, 2009
This is the story of the outcome for one Sutton individual with autism, following Sue Clark and Lizzy Webster, from Jigsaw4u, carrying out consultation work on behalf of the Sutton Disability Partnership.
Background
We had been asked by Sutton Disability Partnership to find out what sort of activities Sutton Children and Young People with Disabilities would like to do for “Short Breaks”- (defined as 2 hours upwards). As part of our consultation we went to Stanley Park High School and met with 15 young people with autism or aspergers. We used the vehicle of the VW bus to get them to imagine where they would like to go on their journey, who with, and to think about what stopped them. They all seemed able to relate to the bus and the concept and enjoyed drawing or filling in their own bus,with or without help.
One boy we met at the school was called Daniel. He is 17 years old and said he had always wanted to be in a band. We collected a lot of information from this group and put it together with other consultation groups until we had an idea of the sort of things they would like to do. We decided to put on a Taster Day with some of their chosen activities, also adding some new ones , as it became clear that unless these young people had tried things, they could not know if they enjoyed them. Shortly after meeting with the group at Stanley Park I noticed an ad in the Sutton Guardian saying "Do you want to join a Band?"
One comment Daniel had made was that, although he had guitar lessons and thought he was OK at playing , he couldn't imagine anyone would ever want someone "like me" (ie with autism) to be in a band. I contacted the people advertising in the Guardian, who called themselves "Realistic Rock". Sue and I went to meet them, explained our brief and they agreed to come along to our Taster Aiming High Day at Sutton Arena and do a series of workshops. It was fantastic – one mother commented her child had never before concentrated on one thing for a whole hour. Unfortunately , Daniel, the original inspiration for the music workshop was away visiting his dad in the USA.
When we returned to Stanley Park to give feedback on the day, Daniel was there and was really disappointed he had missed the opportunity. I rang Richard, who runs Realistic Rock in Epsom and explained the situation He recommended that Daniel could join the 10 week "Beginners to Band" group on a Wednesday. I spoke to Daniel's mum and she explained how Daniel lacked confidence going anywhere on his own with normal young people and added that she couldn't take him anyway because she was working. She gave me an insight into how difficult it is for the families to support these young people and to encourage them to take action on their dreams. We both encouraged Daniel to go and have a look at the Realistic Rock Venue and persuaded him to give it a go. He went there on the Tuesday as a practice run. Daniel turned up early, got a very cool reception and it was all his mother could do to persuade Daniel to return on Wednesday-he rang her 7 times at work! Luckily I managed to speak to Richard and explained that Daniel needed encouragement. Both his mother and I held our breath for the first session! We knew that he needed to connect with one person or he would not return - and he did!
I spoke to him the following evening and he said he had met a boy from college and they were going to form a band. On the 23rd December 2008 Sue and I were invited to Epsom Playhouse to watch him play in a band, acheiving a dream he has had for 5 years and giving his mum a break as well. As she explained, the most difficult part of supporting a child with autism at Daniel's age is setting up appropriate opportunities where they can begin to go out into the world on their own. This small group situation is perfect where the young people have something in common eg music and can relate on that level, but, to truly provide short breaks we need to be prepared to go the whole way in providing support around the activity as well as the activity itself.
Daniel has now gained enough confidence to continue and join the adult band course at Realistic Rock. For Sue and I, in this one case, being able to provide this opportunity and follow it through makes our work worthwhile.
Lizzy Webster and Sue Clark
