How we started

The CBF was founded in 1997 by Vivien Cooper, the parent of a child with severe learning disabilities and challenging behaviour.

When Vivien's son Daniel was diagnosed with the rare genetic condition Cri du Chat syndrome, the only information she was given was a single sheet of paper. This wasn't much help when Daniel was pulling his curtains down, ripping his mattress open and eating the stuffing, or banging his head against the wall.

Like many parents of children with challenging behaviour, Viv and Steve struggled for years without adequate support. Daniel's special school couldn't control his behaviour and when he was nine the school said they were unable to meet his complex needs. At home, family life was disintegrating.

Fortunately, Viv and Steve managed to find a school that specialised in helping children like Daniel. Within months of starting at his new school, Daniel was sitting in a chair on his own and making eye contact. Instead of pushing the table over when he'd had enough food, he now made a sign for 'finish'.

Unfortunately, the school was over 200 miles away, and for the next ten years any visit to see Daniel meant a 500-mile round trip.

With specialist help, children like Daniel can learn ways to communicate that mean they don't need to resort to challenging behaviour. But Viv and Steve received no help until they reached crisis point. All too often the only 'help' offered is medication to restrain the child's behaviour.

Vivien was so frustrated at the lack of information available to parents, that she set up the Challenging Behaviour Foundation in order to provide information and support to other families caring for children with severe learning disabilities and challenging behaviour.

From its earliest days the CBF has always believed in the principles of 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.

While happy that Daniel was making such good progress at his new school, Vivien was NOT happy with the 500-mile round trip required to visit Daniel. Vivien also became an active campaigner for local services for children and adults with severe learning disabilities and challenging behaviour.

The CBF has made significant progress since its humble beginnings in Vivien's garage in 1997 and is aiming high. We would like to take this opportunity to thank all those who have supported us over those years, particularly our office and fundraising volunteers.