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Library: Information for Parents
Books
Children with Epilepsy: A Parent's Guide
Helen Reisner; 1988. Written by professionals and edited by a parent of a child with epilepsy, this book provides a wealth of information on childhood epilepsy and how the family can cope. Much of the details are not current, but the book still contains a great deal of helpful information.
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.
Does Your Child Have Epilepsy? (second edition)
James E. Jan, Robert G. Ziegler, and Giuseppe Erba; 1991. Provides information to help parents effectively manage their child's epilepsy and associated challenges, often using case studies to illustrate points. Some information is out-of-date, but most of the book is still helpful.
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.
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 Some of the information is out-of-date, but the majority of the book is still very useful.
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 Rest of the Family - explores reactions of brothers and sisters, as well as older relatives, when a child has epilepsy. 1992, 14 minutes
Brochures, Booklets, Fact Sheets, and Other Materials
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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)
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Epilepsy in Children: Learning and School Performance
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Epilepsy: You & Your Child
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Family and Parenting: Epilepsy and Adoption
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Identifying Family Concerns for Your Child's IEPC
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The John Hopkins Ketogenic Fact Sheet
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Kids & Seizures: Know the Hidden Signs
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Seizures in Childhood
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Starting School
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Your Child Today & Tomorrow (packet of information for parents)
Web Articles
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