A Parents' Guide to CFIDS: How to Be an Advocate for Your Child with Chronic Fatigue Immune Dysfunction

A Parents’Guide to CFIDS is the only complete book for parents of children with CFIDS (Chronic Fatigue Immune Dysfunction Syndrome). Written in a friendly, personal manner by parents for parents, A Parent?s Guide to CFIDS combines medical, parental, and personal experiences designed to minimize the negative effects of socialization and education on children with CFIDS. This guide will assist you in understanding CFIDS, also known as Fibromyalgia (FM) and Myalgic Encephalomyelitis (ME), one of the most complicated illnesses in medical history. You will learn how to help your child overcome the major academic challenges of CFIDS and the socialization issues inflicted by being cut off from friends and peers at a critical stage of development. Some of the topics covered in A Parent?s Guide to CFIDS include:

• options for academic planning
• how to be your child?s number one advocate
• balancing your family life when you have a child with CFIDS
• helping your CFIDS child develop socially with support groups
• young people with CFIDS speak out about their experiences
• deciding how much physical activity your child can handle
• letters to the school from the physician
• 75 tips for coping with inflicted children, from pain to schoolworkA Parents’Guide to CFIDS is written by a doctor, educators, and parents of children with CFIDS, and guides parents and educators in understanding, coping with, and helping a child with CFIDS live a better life. This roadmap to recovery covers everything from medical terms and doctor visits to assisting with schoolwork and focusing on normal development to improve your child’s life.

ContentsAbout the Authors

• Acknowledgments
• Introduction
• Personal Issues Surrounding CFIDS
• Chapter 1. How Do You Know If Your Child Has CFIDS?
• The Symptoms
• Differences Between Children and Adults with CFIDS
• Inaccurate Diagnoses
• Chapter 2. The Misunderstood Illness
• Chapter 3. How to Balance Your Family Life When You Have a Child with CFIDS
• The YPWC
• The Special Problems of Being a Brother or Sister of a YPWC
• Your Changing Role As a Parent of a YPWC
• Chapter 4. How to Be Your Child?s #1 Advocate
• How to Have a Good Relationship with Your Child?s Doctor
• How to Be Your Child?s Advocate at School
• Further Consideration
• Chapter 5. Helping Your YPWC Develop Socially
• The Health Child?s Socialization
• Social Issues for the YPWC
• Chapter 6. YPWCs and Parents Speak About Developmental Stages of Coping with CFIDS
• Obtaining a Diagnosis
• Coming to Terms with CFIDS
• Denial
• Losses and Grieving
• Depression
• Anger
• Fighting the Diagnosis
• Reaching Out and Sharing
• Identity Formation
• Acceptance
• Educational Issues Surrounding CFIDS
• Chapter 7. Deciding How Much Your Child Can Do
• How Many Hours of School Can Your YPWC Manage?
• Scheduling Your YPWC?s Daytime Hours
• Chapter 8. Discussing Some of Your Child?s Educational Options
• Working with the Staff on a Day-to-Day Basis
• Become Aware of Laws Pertaining to Education
• Chapter 9. Evaluating Intellectual Abilities
• Standardized Tests
• Preparing for Testing
• Interpreting Performance
• Epilogue: Look How Far We?ve Come
• Appendixes
• Appendix A: Chronic Fatigue Immune Dysfunction (CFIDS) Health Questionnaire for School Personnel
• Appendix B: Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) Organizations and National Support Groups
• Appendix C: On-Line Resources
• Appendix D: Letters to the School from the Physician
• Appendix E: Educational Resources
• Appendix F: List of Abbreviations/Acronyms
• Appendix G: Seventy-Five Tips for Coping with CFIDS in Children--From Pain to Schoolwork
• Appendix H: Sample 504 Plans and IEP
• Appendix I: Educational Citations
• Index