Understanding Rett Syndrome: A Practical Guide for Parents, Teachers, and Therapists [Hardcover]

Barbro Lindberg (Author)

Book Description

Publication Date: January 1994 | ISBN-10: 0889370338 | ISBN-13: 978-0889370333 | Edition: 4th

Rett Syndrome is a severe neurological disorder whose cause is currently unknown. It leads to a variety of problems, often involving retardation, serious motor handicaps, epileptic seizures and difficulties with communication. The syndrome is found only in girls, and usually only becomes noticable during the second year of life. The disorder is estimated to occur in one out of every 10,000 female births worldwide, but as the characteristics of the problem are becoming more widely known, new cases are being reported at an increasing rate. This work on Rett Syndrome attempts to explain the problem and the implications for the individuals involved, their parents, teachers and those who work with them. As no cure is available yet, medical science has little to offer in the way of help to the families involved. This book provides practical insights and techniques for those working with this problem.

Editorial Reviews

Review

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 --This text refers to an alternate Hardcover edition.

Language Notes

Text: English (translation)
Original Language: Swedish

Product Details

• Hardcover: 184 pages
• Publisher: Hogrefe & Huber Pub; 4th edition (January 1994)
• Language: English
• ISBN-10: 0889370338
• ISBN-13: 978-0889370333
• Product Dimensions: 9.1 x 6 x 0.7 inches
• Shipping Weight: 1 pounds
• Average Customer Review: 5.0 out of 5 stars  See all reviews (2 customer reviews)
• Amazon Best Sellers Rank: #3,911,940 in Books (See Top 100 in Books)

More About the Author

Discover books, learn about writers, read author blogs, and more.

Customer Reviews

Most Helpful Customer Reviews

11 of 11 people found the following review helpful:

5.0 out of 5 stars The title says it all, January 21, 2002

By 

Laura Pattillo "LP" (Fairfax, CA United States) - See all my reviews
(REAL NAME)   

This review is from: Understanding Rett Syndrome: A Practical Guide for Parents, Teachers, and Therapists (Hardcover)

We have an 11 year old daughter with Rett Syndrome named Meredith. We only recently heard about this wonderful book. For so many years we wondered what was going through Meredith's head - this book answered that question and many more. It was life changing. It is a MUST READ for parents, teachers and all other professionals that come into contact and care for our special children.

1 of 1 people found the following review helpful:

5.0 out of 5 stars Must Read Understanding Your Daughter, April 30, 2008

By 

Kristine Dunahay - See all my reviews

This review is from: Understanding Rett Syndrome: A Practical Guide for Parents, Teachers, and Therapists (Hardcover)

If your daughter or grand-daughter has this dehabilitating syndrome, I strongly recommend you read this book. I am a grandmother whos grand-daughter has Rett Syndrome. Not knowing the unknown will hamper, push you away, make you wonder what's she's thinking and what for you to do? This book will give you so much advise, and answer the unknowns, and give you more insentives to your knowings. This book will give answers that doctors cannot even tell you. (They most likely have not walked in your footsteps.) How the family will cope, together, with your daughter. This book is a must for any and all families dealing with a female with Rett Syndrome. I cannot stress it enough. Anyone close to her, should take the time to read this knowledgeable, factual and inspiring book. I gave this book to the mother, and told her that she MUST read it. I promise you, that you'll see light at the end of a darken pit. This is why I gave this book 5 stars.