Rett syndrome : therapies and parents' views

Rett syndrome is a profoundly handicapping neurological disorder with an incidence of approximately 1 in 10,000 live female births. The recently acknowledged syndrome has neither known cause nor cure. The nature of the syndrome is particularly distressing for parents, since regression occurs in infants after apparently normal early development. Rapid therapeutic intervention after diagnosis is considered vital in order to ameliorate detrimental stereotypical behaviours and to limit painful physical deterioration. However, there is little published research dealing with the effects of therapies or the manner which they are delivered in schools.;The National Curriculum in Britain aims to ensure that pupils have access to a broad and balanced education, regardless of ability. The rights of children are recognised in legislation, and it is accepted that some pupils will need specialist support. Recent trends are towards greater involvement of parents in educational issues and towards encouraging the development of partnerships in education.;This research examines therapy provision for girls with Rett syndrome aged between 7 and 12 years, investigates parental opinions regarding effectiveness of therapies in key skill areas of communication, hand function, motor ability and learning ability, and touches upon the broader issues of how essential needs can be considered alongside the rights of children in the classroom environment. The study shows that the roles of teachers and therapists are complementary, and suggests that enhanced professional interaction may be a future objective.;Music therapy, physiotherapy, hydrotherapy and speech therapy are the most common forms of intervention, and the perceived values of each are reported. Inconsistency in provision is apparent, and whilst all therapies are considered beneficial, no single therapy is identified as significantly more beneficial than others.