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Understanding Rett Syndrome


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Table of Contents

Foreword (Andreas Rett); Introduction: Background; Aim; Sample; Methods; Development and Progress in Rett Syndrome; The Individuals in the Study; Typical Symptoms and Behaviors: Deficiencies in Perception and Sensory Integration; Stereotypical Behaviors; Dyspraxia - "Want of Success"; Severe Motor Disabilities; Difficulties in Coordination; Mental Retardation; Communication Disorders; Emotional Channels; Large Fluctuations in Behavior; Emotional Reactions; Insecure Identity; Guidelines for Treatment and Teaching: Two Principal Teaching Groups; Multi-handicap; Understanding the Environment; Using the Body; Interacting and Communicating with the Environment; Being Active; Expanding One's World; Appendices: Questions Forming a Basis for Interviews with Parents; Questions Forming a Basis for Interviews with Parents/Care Givers; Questions Forming a Basis for Interviews with School Staff; References.


Christopher J. Graver, PhD(Western State Hospital) **Description** As the title suggests, this book addresses Rett syndrome and the complex array of symptoms and behaviors from an educational perspective. The author has spent extensive time with these patients. **Purpose** This book is intended to provide general information about the general development and course of Rett syndrome, signs and symptoms, and treatment consideration for individuals who have this disease. The second edition is intended to expand the coverage of this disease through chapters on intelligence and education, learning and communication, and sensory environments. **Audience** It is intended for individuals who work with those who have Rett syndrome, including caregivers, educators, psychologists, occupational and physical therapists, and physicians. **Features** A brief overview of the stages of Rett syndrome is presented, followed by a look at the functional abilities of the 39 girls involved in the study. The book then progresses to signs and symptoms of Rett syndrome. The author provides a unique and personal approach to this disease by giving examples of patients'behaviors which illustrate the range of possibilities with this syndrome. There are very practical solutions offered for treating and managing the symptoms of this syndrome, which stem from the author's experience in working with these patients. In addition to providing management strategies, the author also presents strategies for enriching and improving the quality of life for these patients. The book ends with a few examples of interview forms that may be helpful when discussing the patient with a parent, caregiver, or teacher. Regrettably, this book is lacking in empirical references that may have helped to solidify some of this information. For example, in the interacting and communicating section, the recent article by Stauder, Smeets, van Mil, and Curfs ("The development of visual and auditory processing in Rett syndrome: An ERP study." Brain Development, in press.) would have added a scientific understanding to the behavioral observations of the author. For a second edition, the limited number of updated references is disappointing. **Assessment** From a practical perspective, this book delivers useful observations on clinical signs, symptoms, and behaviors in Rett syndrome, and does so in a personal manner with specific examples from patients. In addition, the suggestions for the management of problematic behaviors and enrichment of the patients' lives are insightful. Readers approaching the book in this hands-on manner will find it valuable; readers hoping to gain a deeper scientific understanding of Rett syndrome, however, may walk away feeling unfulfilled. ----------------------------------------------------------- Weighted Numerical Score: 77 - 3 Stars

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