Written for parents, carers and professionals who have responsibilities for people with profound intellectual and multiple disabilities, ''Listen to Me'' focuses on two crucial issues: how to cope with the complex problems of someone with this level of disability, interpret their needs successfully, and maintain effective contact with all the professionals and organizations who deal with them; and how to enrich that person's experience and ensure that others value him or her as a distinct individual with a right to a meaningful life. Highly practical, and using examples from the author's experience with her own daughter, each chapter deals with communicating such rights and needs in particular situations, and includes references for further information and reading. The author explains how to prepare a Care Book which includes the essential personal information, not simply about medication and physical procedures but about the individual's interests, preferences and how it can be used to communicate effectively.
Introduction: Kathy, this book is not... this book is for... Part 1 Learn about me: diagnosis and first contact with doctors and hospitals. Part 2 Tell them about me: the care book. Part 3 We need to communicate: why do we need to communicate?; diaries; medication; information sheets; writing to people; telephoning; talking to people; in nursery, school or centre; leisure activities; respite and residential services; independent living arrangements; mobility, equipment and adaptations; benefits; families and friends; the future - wills, trusts and guardians. Part 4 Doctors and hospitals: your GP; in casualty; in hospital; things can only get better - or can they? Conclusion: who cares? Facing up to reality and difficult decisions.
The book is, I believe, modern in concept and in its argument. Pat Fitton gives us a thoughtful and clear account of what is demanded of the parent and carer, and also of what they might reasonably expect our education, welfare benefits, health, leisure and social services to provide when someone has a disability... very moving and very informative at the same time: it is difficult to recall many books which have such a powerful effect... An important source of support mentioned by many parents is the information, advice and empathy received from other parents and carers. Listen to Me is a major contribution to that tradition of mutual support and understanding.
