Abstract

The British Paediatric Association (1994) has estimated that in an 'average' population of 250 000 people, there will be 200 children with severe learning disabilities. Of these children, the number with behaviour difficulties has been estimated to be higher than that of the rest of the population (Saxby & Morgan I993). Behaviour difficulties are considered a major source of stress for parents and carers (Quine & Pahl I985; Quine I986). The effect upon the family, the carers and the child are considered complex and bi-directional (Dyson I993; I996). This paper explores the experience of one family, whose child had Prader-Willi Syndrome and severe behaviour difficulties, and the process undertaken to access specialist training in 'Breakaway' training. Prader-Willi Syndrome has been associated with a range of behaviour difficulties including hyperphagia and food preoccupation, temper tantrums, stubbornness, lability, impulsivity, arguementativeness, depression, anxiety and repetitive behaviours (Dykens & Kasari I997). An escalation of the child's aggressive outbursts had necessitated intervention and the traditional methods of behaviour management had proven insufficient during episodes of crisis. To ensure the safety of both the parents and the child, access to training in 'Breakaway techniques' for the carers was procured, at the carers request. This paper concentrates upon the difficulties encountered during this process, both for the family and the professionals involved. All names and locations identified in this paper have been changed to protect the anonymity of the individuals involved.

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