Library: Information for Parents
Books
The Complete IEP Guide: How to Advocate for Your Special Ed Child (second edition)
Lawrence M. Siegel, Attorney; 2001. Updated and expanded edition of this valuable resource for parents. The IEP (Individualized Education Program) determines the nuts and bolts of your child's special education, including the specific classroom and program, educational goals, curricula, and support services. Written by a special education attorney and advocate of 20 years, this comprehensive, compassionate, and practical guide provides all the instructions, strategies, resources, and forms you'll need from your child's initiation into special education until the completion of school. Provides up-to-date federal special education laws and extensive appendices, including a list of over 125 groups and organizations.
From Emotions to Advocacy: The Special Education Survival Guide
Pam & Peter Wright; 2002. A comprehensive guide for parents acting as advocates for their children with disabilities; offers a step-by-step guide to becoming an effective advocate, including information on education law, the IEP process, education and disability resources, and much more; written by a special education attorney and a psychotherapist whose child received special education services.
Growing Up With Epilepsy: A Practical Guide for Parents
Lynn Bennett Blackburn, Ph.D.; 2003. Written by a pediatric neuropsychologist at St. Louis Children's Hospital's Pediatric Epilepsy Center, this book provides parents with the tools to understand and address potential cognitive and behavioral problems associated with epilepsy and be effective advocates. The book includes information on brain functions, educational and behavioral management strategies, and what to expect as the child gets older.
The Ketogenic Diet
John M. Freeman, MD, Jennifer B. Freeman, and Millicent T. Kelly, R.D., L.D.; 2000. This book is the only book devoted exclusively to the Ketogenic diet. It includes research findings, practical tips, parent testimonials, sample recipes and menus, and much more. The book is appropriate for parents, doctors, and dieticians.
School Planning: A Guide for Parents of Children with Seizure Disorders
Epilepsy Foundation of America; 1994. This guide is designed to help parents advocate for an appropriate education for their child with epilepsy. The guide includes a number of helpful case studies, sample IEPs, and other examples of how parents and schools have worked together to support the needs of children with epilepsy. Some of the information is out-of-date, but the majority of the book is still very useful.
Seizures and Epilepsy in Childhood: A Guide for Parents, 3rd Edition
John Freeman, MD, Eileen P.G. Vining, MD, and Diana J. Pillas; 2002. This award-winning book is a standard resource for parents in need of comprehensive medical information about their child with epilepsy. Topics discussed include the ketogenic diet, new diagnostic techniques, medications, surgical evaluation and treatment, routine health care for children with epilepsy, complementary and alternative therapies, insurance issues, and additional resources.
Wrightslaw: Special Education Law
Pam & Peter Wright; 1999. Provides text and explanation of important special education laws, including IDEA, Section 504, and the Family Educational Records and Privacy Act; also includes summaries of U.S. Supreme Court Decisions related to special education.
Videos
Childhood Epilepsy - 2005 Epilepsy Today Conference presentation on the diagnosis and treatment of epilepsy in children; Harry Chugani MD, FAAN; 70 minutes (VHS or DVD)
Epilepsy and School Performance - 2005 Epilepsy Today Conference presentation on the potential impact of epilepsy on school performance; Robert Rothermel, Jr., PhD; 82 minutes (VHS or DVD)
Depression in Children and Adolescents with Epilepsy - 2005 Epilepsy Today Conference presentation; Linda Tebelman, MSW; 77 minutes (VHS or DVD)
Epilepsy and the Family - features parents of children with epilepsy and explores how they cope with the challenges. 1990, 12 minutes
And Life Goes On: Severe Seizures of Early Childhood - Parents and physicians discuss Lennox Gastaut syndrome and infantile spasms. 1991, 16 minutes
Planning for Today and Tomorrow - for families in which there is an adult child or teenager having intractable epilepsy. 1992, 15 minutes
School Planning for Children with Seizure Disorders - 1992, 14 minutes
The Child and the Family - (slides on tape with narration), 1986, 15 minutes
The Rest of the Family - explores reactions of brothers and sisters, as well as older relatives, when a child has epilepsy. 1992, 14 minutes
Managing Seizures in Children - an introduction to epilepsy in children; shows examples of different types of seizures; 2000, 18 minutes
Brochures, Booklets, Fact Sheets, and Other Materials
- Beach Center on Families and Disability: Fact Sheets
(Upon request, Epilepsy Foundation of Michigan can provide you a list of the specific fact sheets included, from which you can choose what you want) - Epilepsy in Children: Learning and School Performance
- Epilepsy: You & Your Child
- Family and Parenting: Epilepsy and Adoption
- Identifying Family Concerns for Your Child's IEPC
- The John Hopkins Ketogenic Fact Sheet
- Kids & Seizures: Know the Hidden Signs
- Seizures in Childhood
- Starting School
- Your Child Today & Tomorrow (packet of information for parents)
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