How We Started
When Daniel was diagnosed with the rare genetic condition Cri du Chat syndrome shortly after he was born, we had no idea what to expect. When Daniel started to bang his head on hard objects when he was a year old practical information and support was not readily available, and we struggled as a family to get good advice about how to support Daniel.
By the age of nine, Daniel’s behaviours were such that we were all struggling to contain them – at home, school and respite - and it was decided that he needed to go to a 52 week specialist residential school. Unfortunately this school was over 270 miles from our home.
At the school, they had what to us was a “new” approach – they systematically looked at the function of Daniel’s behaviours – what purpose the behaviours served for him. And at the same time they worked on developing new skills and improving his communication (Daniel communicates non verbally and uses signs and symbols). At this point we thought “why didn’t we know this and do this when he was much younger?”
Vivien enlisted support and advice from a range of individuals about setting up the Challenging Behaviour Foundation, and it was registered on 14th February 1997 as a charity. It was started with no resources, other than determination to ensure that individuals with needs like Daniel’s and their families should be able to access the right information and support, in the right place and at the right time.
From its earliest days the CBF has always believed in the principles of working in partnership, pooling expertise and sharing information and good practice. Various professionals were approached, and persuaded to write information leaflets on topics in which they had expertise (an ongoing technique still employed today!). These leaflets, provided free of charge to parents, provide factual information, explanations and practical guidance. They were originally copied on a single sheet donated copier, in a small office area converted from part of Vivien’s garage!
The CBF has made significant progress since its humble beginnings, but we are aiming high and there is much still to do. Our ultimate aim is that there is no need for a CBF – everyone gets good support at an early stage and we put what we know works into practice to enable everyone to have a good quality of life. We know this can only be achieved by working together, by empowering families with information and support, and by strategic influencing, and we hope you will help us to make a difference.
What people say about the CBF
“A few months ago I was at the end of my tether and ready to give up, but having support from the CBF has enabled me to continue” (Family carer)
“The CBF has done an excellent job in compressing the relevant information into such an accessible format” (professional)
“a very credible and articulate organisation. They plan carefully, consulting widely, and have produced resources which are both of high quality and practical use… a very impressive group” (professional)
“Not only has the CBF provided us as parents with a great deal of support – we’re much better informed, more able to cope and don’t feel so alone – our GP is now aware that there are ways to assess a person with communication difficulties and he will be better able to support other patients and their families in the future” (Family carer)