A Teacher's Guide to Neuromuscular Disease

April 2008

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If you’re a teacher of a student with a neuromuscular disease, this booklet will help you better understand the challenges faced by children and adolescents affected by muscular dystrophy and related diseases. This guide suggests general strategies to enhance your student’s school experience, both academically and socially, and addresses school issues from kindergarten through high school.

Learning about the range of problems associated with neuromuscular diseases can feel overwhelming. The good news is that these students also come with their own unique set of deep strengths. And your role in encouraging, supporting and motivating them draws on many skills you’re already using with your diverse students.

In addition, your local Muscular Dystrophy Association office is a valuable resource of information and help. You also can call (800) 572-1717 or browse the rest of this site for free access to a huge library of publications and other material about specific neuromuscular diseases, disability information, research and resources.

Acknowledgments

Boys working on a computer
Kids working at the board in class

We’re grateful to Patricia B. Porter, Colin D. Hall, M.D., co-director of the MDA clinic at the University of North Carolina Hospitals in Chapel Hill, and Faye Williams, who wrote “A Teacher’s Guide to Duchenne Muscular Dystrophy,” published and distributed by MDA in 1995. This publication expands on the important information in that booklet.

We also received invaluable help from Paula Ables, Amy Dunaway-Haney, Vicki Duncan, Patricia Moore and Angela Wrigglesworth. Their insights as educators who are in the classroom every day helped us to more fully understand the needs and perspectives of teachers.

Sierra Lewis and Ayla Mott donated their time to pose for photos.

Our thanks also go to the many parents, teachers, counselors, therapists and others — including youngsters with neuromuscular diseases — who have assisted MDA through support groups, classroom presentations, interviews with the media and other means.

Their willingness to share their personal and professional experiences and knowledge has provided priceless help to people of all ages who are living with neuromuscular diseases.