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When Your Child Has a Disability: The Complete Sourcebook of Daily and Medical Care / Edition 1

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Overview

With even more practical information and direct answers to families' questions, the second edition of this easy-to-read guide is a proven resource for helping parents meet the demands of raising a child with a disability. You'll get updated, expert advice on a wide range of medical and educational issues as well as detailed coverage of the daily and long-term care requirements of specific disabilities, including mental retardation autism hearing impairment Down syndrome visual impairment communication disorders seizure disorders spina bifida ADHD cerebral palsy genetic syndromes New to this edition are chapters exploring nutrition, dental care, legal rights and benefits, and the transition to adulthood, as well as information on development and commonly used medications. Answers to frequently asked questions follow the chapters, addressing common parent concerns like sleep, behavior, medication, and potential complications.

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Editorial Reviews

Allison Martin

For parents of children who have special needs (or are 'at risk' for developmental disabilities), When Your Child Has a Disability is invaluable. No other book comes close for educated, practical coverage of developmental disabilities, and accompanying special needs, in children.
parent and psychoeducational therapist, TEACH Center, University of North Carolina, Chapel Hill - Christine Reagan
Well written . . . and useful to parents.
parent of a child with a disability - Joan Kilburn
Very helpful and clearly presented, it gives parents a good overview of the health care system and provides a good start toward making informed choices.
Journal of Genetic Counseling
This book does a great job of validating parental roles and encouraging parental involvement. . . . Certain excerpts from this book could definitely be helpful to parents of a child with most any disability. The succinct chapters regarding educational and legal rights will be especially helpful to parents seeking this information at a basic level. This volume's in-depth information seems most complete for families who have a child who has spina bifida, cerebral palsy, an autism spectrum disorder, or epilepsy.
Division for Physical and Health Disabilities Journal of the Council for Exceptional Children
Even though this is a book that is geared for parents, the style is directed for people who have at least a college education. . . . a great discrepancy in the style from chapter to chapter with some, such as the one on Spina Bifida being excellent, complete, comprehensive and easy to understand in medical terms and alternatively, the one on Genetic Disorders is quite complex and would be difficult to understand for most parents.
Support for Families of Children with Disabilities
The author has collected essays written by experts in their fields to help the reader learn how to get the correct diagnosis and how to help your child with a disability. It helps clarify the various health care needs and systems.
Booknews
This compact guide covers the daily and long-term care requirements<-- >including medication, rehabilitation, nutrition, education, and legal rights<-->of child disabilities in a clearly written and usefully organized text. Each section includes an extensive description of the disability, followed by a list of answers to commonly asked questions. The following disabilities are covered: mental retardation, Down syndrome, other genetic syndromes, spina bifida, epilepsy, cerebral palsy, hearing loss, communication disorders, visual impairment, autism spectrum disorders, ADHD, and learning disabilities. Annotation c. Book News, Inc., Portland, OR (booknews.com)
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Product Details

  • ISBN-13: 9781557664723
  • Publisher: Brookes Publishing
  • Publication date: 1/1/2001
  • Edition description: REVISED
  • Edition number: 1
  • Pages: 496
  • Product dimensions: 6.00 (w) x 9.00 (h) x 1.00 (d)

Meet the Author

Mark L. Batshaw, M.D., is currently the "Fight for Children" Chair of Academic Medicine and Chief Academic Officer at the Children's National Medical Center (CNMC) in Washington, D.C., and serves as Professor and Chairman of Pediatrics and Associate Dean for Academic Affairs at The George Washington University School of Medicine and Health Sciences in Washington, D.C. Dr. Batshaw is also Director of the Children's Research Institute at CNMC. Dr. Batshaw is a board-certified neurodevelopmental pediatrician who has treated children with developmental disabilities for more than 25 years. Before moving to Washington in 1998, he was Physician-in-Chief of Children's Seashore House, the child development and rehabilitation institute of The Children's Hospital of Philadelphia, and held the W.T. Grant Chair in Child Development at the University of Pennsylvania School of Medicine. Dr. Batshaw is a graduate of the University of Pennsylvania and of the University of Chicago Pritzker School of Medicine. Following pediatric residency in his native Canada at the Hospital for Sick Children in Toronto, he completed a fellowship in developmental pediatrics at the Kennedy Institute (now called the Kennedy Krieger Institute) and The Johns Hopkins Medical Institutions in Baltimore.

He remained a professor at Johns Hopkins for 13 years and won the prestigious Alexander Schaffer teaching award while there. A Joseph P. Kennedy, Jr., Scholar and recipient of major grants from the March of Dimes Birth Defects Foundation and the National Institutes of Health (NIH), Dr. Batshaw is director of the NIH-funded Mental Retardation and Developmental Disabilities Research Center at CNMC and continues to pursue his research on innovative treatments for inborn errors of metabolism, including gene therapy. Dr. Batshaw has published more than 130 articles, chapters, and reviews on his research interests and on the medical aspects of the care of children with disabilities. Dr. Batshaw was the founding editor in chief (1995 - 2001) of the journal Mental Retardation and Developmental Disabilities Research Reviews. He is also the editor of When Your Child Has a Disability: The Complete Sourcebook of Daily and Medical Care, Revised Edition (Paul H. Brookes Publishing Co., 2001), and Handbook of Developmental Disabilities (co-edited with Kurtz, Dowrick, & Levy; Aspen Publishers, 1996). Dr. Batshaw is a Fellow of the American Academy of Pediatrics and is a member of the American Pediatric Society, the Society for Inherited Metabolic Disorders, the Society for Pediatric Research, and the Society for Developmental Pediatrics. Dr. Batshaw's investment in the well-being of children was first sparked by his parents, both of whom were social workers; his father was involved in modernizing the juvenile justice system in Quebec. Dr. Batshaw's wife, Karen, is a social worker in the field of international adoptions. His children also continue this legacy of making a difference: His daughter, Elissa, is a special education teacher and co-authored the chapter on special education in this edition of Children with Disabilities; his son Michael is a social worker; and his younger son, Drew, has overcome the challenges of attention-deficit/hyperactivity disorder to graduate from Vassar College and enter business school.

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Read an Excerpt

Finding Out Your Child Has a Disability

When you find out your child has a disability, it may not seem possible to return to your everyday world. This chapter discusses some of your first feelings and means of coping with them. Making contact with professionals, support groups, and other parents who share similar experiences will help you find the strength to develop and foster the health and well-being of your child. Understanding that you are not alone and that other families have gone through what you are going through is half the battle; the rest is coming up with solutions. You will end up as an expert on your child, capable of helping others. Your family can survive and emerge whole.

Marty

Sue and David had been concerned about their son Marty's development since his premature birth at 32 weeks. Marty had come home from the hospital at 2 months of age a happy, if small, baby. The early intervention therapist who came to their home noted that Marty's feet seemed stiff and tended to cross, or "scissor." At Marty's next checkup, the pediatrician diagnosed Marty as having spastic diplegia, a form of cerebral palsy (see Chapter 19) common in preterm infants. Sue and David were devastated. They cried and exchanged angry words. Sue felt guilty because she believed that her high blood pressure may have caused the early delivery. Sue and David's children responded to the tension: Marty became crankier, and 5-year-old Jody began to misbehave. David started spending more time at work to get away from the stresses at home, and Sue felt abandoned. She recognized that she needed help and spoke to the early intervention therapist, who referred her to a social worker. Sue entered into short-term counseling, and subsequently David agreed to join her. They reopened lines of communication and got some practical advice about coping with their feelings and providing behavior management for Jody. Sue and David also joined a parent support group that met monthly, and they received significant support from their extended family and their church. Most important, Marty was starting to make real progress in his early intervention program, and Sue and David derived great pleasure from every gain he made. Marty, in turn, responded to their praise and tried even harder, and Jody was brought in as a "special helper." Although Sue and David still have their moments of sadness, they are proud of their children and are glad that they have brought their family closer together.

DEALING WITH YOUR REACTIONS

When you first learned that your child had a disability, your initial response may have been shock, accompanied by a sensation of emotional numbness. This reaction is especially common when the news is delivered unexpectedly. Or, you may have had concerns about your child's development over a period of months or years. By the time your child's disability was formally diagnosed, you may not have been greatly surprised. Even under these circumstances, however, it may be difficult to hear words spoken aloud that confirm your fears. You may go through a period of denial, either before or after receiving the diagnosis. Denial is a healthy and, in some ways, necessary stage of the grieving process. On a superficial level, the reaction "It can't be" is perfectly understandable because we naturally wish bad news to be untrue. On a deeper level, denial over the short-term functions as a protective mechanism that we use to conserve our emotional energy for the critical tasks that we must accomplish, such as child rearing. This phase is normal. Problems arise, however, when denial is prolonged and you are not able to move forward on tasks necessary for your child's and your family's welfare.

When receiving bad news, people either internalize or externalize their reactions. Internalization is the process of assuming blame for misfo

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Table of Contents


I. Getting the Diagnosis

1. Finding Out Your Child Has a Disability
James Coplan and Symme W. Trachtenberg

2. Making the Most of Doctor Visits
Susan E. Levy

3. Why My Child? Causes of Developmental Disabilities
Mark L. Batshaw

4. How a Young Child Develops
Mark L. Batshaw

II. Growing Up with a Disability

5. Your Baby Was Born Prematurely
Penny Glass

6. Understanding Early Intervention
Sharon Landesman Ramey, Karen Echols, Craig T. Ramey, and Wanda Y. Newell

7. Nutrition and Feeding
Peggy S. Eicher

8. Dental Care for Your Child with Special Needs
George Acs and Man Wai Ng

9. Understanding Rehabilitation Therapies
Lisa A. Kurtz

10. Commonly Used Medications
John Albert Wray

11. Encouraging Appropriate Child Behavior
John M. Parrish

12. Your Child's Educational Rights
Sheila Rose Mazzoli

13. Identifying Legal Rights and Benefits
D. Michael Malone

III. Developmental Disabilities

14. Mental Retardation
Mark L. Batshaw

15. Down Syndrome
Nancy J. Roizen

16. Genetic Syndromes
Gretchen A. Meyer

17. Spina Bifida
Catherine Shaer

18. Epilepsy
Steven Weinstein

19. Cerebral Palsy
Louis Pellegrino

20. Hearing Loss
Annie Steinberg and Lisa J. Bain

21. Communication Disorders
Paul Wang and Ken Bleile

22. Eye Disorders and Visual Disabilities
Mohamad S. Jaafar and Mark L. Batshaw

23. Autism Spectrum Disorders
Kenneth E. Towbin

24. Attention-Deficit/Hyperactivity Disorder
Mark A. Stein and Mark L. Batshaw

25. Learning Disabilities
Bruce K. Shapiro

IV. What the Future Holds

26. What About Our Next Child? Genetic Counselling
Cynthia J. Tifft

27. Keeping Up with Changes in Health Care
Angelo P. Giardino

28. Success on the Road to Adulthood
Patience H. White, Andrea Edelman, and Vincent Schuyler

Suggested Readings and Resource
Index
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