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

by Mark L., Ed. Batshaw Ed.

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.

Product Details

ISBN-13:	9781557664723
Publisher:	Brookes, Paul H. Publishing Company
Publication date:	01/01/2001
Edition description:	REVISED
Pages:	496
Product dimensions:	6.00(w) x 9.00(h) x 1.00(d)

About 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.

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 misfortune. The two most common emotions experienced by people who internalize are guilt and shame. In Sue's case, it was guilt that she had high blood pressure that may have caused Marty's premature birth. Externalization refers to the process of placing responsibility for events on others. The most common feelings experienced by people who externalize are blame and anger. These two response patterns, internalization and externalization, stem from the unspoken belief that when something bad happens, "It's got to be somebody's fault."

Eventually, when we feel emotionally safe, we let our feelings show. This is usually a time of overwhelming grief. As with shock and denial, grief is a healthy emotion. Parents who are consumed by guilt, shame, blame, or anger may not be able to grieve properly. This can create significant problems in the long run. Once parents pass through the stage of acute grief, however, they come to accept the fact of their child's disability. This transition is marked by the return of some degree of optimism or at least a determination to do the best that one can. Even so, it is normal from time to time to ask yourself "What if?" and wonder how things might have been. It is also normal to reexperience grief at certain life cycle events, such as birthdays, school entry, and other occasions that remind you of what has been achieved and what has not.

DIFFERENCES BETWEEN PARENTS/PARTNERS

Different family members and caregivers may have different reactions to news of a child's disability. For example, the child's primary caregiver often may suspect that something is different about the child first, and, as mentioned previously, may not be that surprised to learn that the child has a disability. These differing views can cause friction between parents, especially if one is ready to hear the diagnosis but the other is still at an earlier stage in the reaction process, such as denial. Being at different stages in the grieving process is also typical because people grieve in individual ways.

Although it is no longer as true as it once was, men in our culture are still expected to be "strong" and to not show their grief. They may have more difficulty talking about their feelings. This can create a barrier for fathers in terms of working through their own grief.

Problems arise when each partner grieves privately and is unavailable to provide emotional support to the other. For example, in Sue and David's family, one parent (David) spent more and more hours at work, whereas the other (Sue) remained on the "front lines" both physically and emotionally. Mothers may be somewhat more prone to blame themselves for their child's disability, particularly if they have some questions about the pregnancy or labor and delivery.

SPECIAL CASES

The Strongly Desired or Long-Awaited Child

If you have experienced difficulty conceiving or if you have waited to have children, this wait raises the stakes emotionally. It may make it even harder than usual for you to adapt to your child's disability; alternatively, you may be more accepting than the typical parent of your child's disability.

The Unplanned Child

Rearing children requires parents to give up a tremendous degree of freedom. If you had not planned to make these sacrifices, your child's disability may make the parenting role even more difficult. You may experience feelings of rejection directed toward your child. If this is the case, it may be helpful for you to bear in mind that many parents, even parents of wanted children, are sometimes ambivalent about their role as parents.

The Adopted Child

As with the strongly wanted biological child, the adopted child comes as a special gift. If you have adopted your child because of infertility, then you may experience a double layer of grief or anger: first, because of your inability to conceive and second, because you feel "unfairness" that your adopted child has a disability. Alternatively, you may have knowingly adopted a child who was at risk for disability because you felt you could provide much-needed love and support. If this has been the case, then sadness because of your child's disability may be compounded by a sense of personal failure — that you somehow failed to avert the bad outcome you knew was a possibility when you adopted.

Blended Families

The birth of a child represents the cementing of a relationship. If you or your partner have typical children from previous relationships, it may be difficult to avoid feeling that your relationship with your present partner is somehow weakened by the birth of a child with disabilities.

TELLING THE REST OF THE FAMILY

The simple answer to the question "What do we tell the rest of the family?" of course, is "Just tell them the truth." Unfortunately, life is often not that simple because different members of the family may be at very different points in the grieving process.

What Do We Tell Our Parents?

During difficult times, we tend to fall back on our accustomed relationships with our own parents. If those relationships have been supportive and based on mutual respect, then it is relatively easy to go to one's parents for comfort and support in times of distress. If the relationship with one's parents has been difficult, superficial, or distant, then sharing the news will be much harder. Sometimes grandparents are actually the first to notice a problem in the child, but they may hold their tongues until their own children are able to see and respond to the situation. If this has been the case, then getting the diagnosis out in the open may represent an opportunity for the family to come together. Sometimes, however, grandparents experience denial themselves. They, like anyone who experiences denial, may urge you "not to worry" about your child, or they may challenge the validity of your perceptions or the competency of the doctors or other professionals who have diagnosed your child's disability. Supportive grandparents should be welcomed as allies. If they are unable to fulfill this role, then they should be kept informed but prevented from intruding on your role as primary caregivers.

What Do We Tell Our Other Children?

Children, even more than adults, tend to blame themselves when they sense that an event has upset the family. Children view themselves as the center of the universe. Therefore, they magically think that they must be responsible for anything that happens in their universe. This is especially true of preschool children. The first thing you may need to do is to reassure your other children that this did not happen because of anything they thought or did. (This advice may sound strange, until you stop to ask yourself the following question: "How many times have I tried to blame myself for my child's disability, even though the doctors keep telling me it was not my fault?") It is also important to tell your other children that the disability is not something they will "catch." Sharing your own feelings with your other children in a way that will be understandable to them is appropriate. "Mommy and Daddy feel very sad because your brother has a problem that we can't fix," might be the explanation for a preschooler. If your other children are a little older or when your preschooler is older, simple explanations for the cause of the disability, if known, may be appropriate.

Even more important, however, is your ability to convey to your other children that their feelings are normal — whether these feelings consist of irrational self-blame or resentment because of the extra attention you may need to give to your child with a disability. "It's okay to feel angry. Mommy and Daddy sometimes feel like that ourselves," is often the best response, even as you remind your other children that it is not okay to act out these feelings of resentment in ways that can hurt other people. Saying this may be difficult for you, but it is preferable to responses such as "How can you say that about your brother? Don't you know he has a problem?" The ability to listen sympathetically to your other children in this fashion is directly linked to how well you have been able to deal with such feelings yourself. If you are still focused on your own coping, you with find it hard to give your children the emotional space they need to ventilate their own feelings.

It is also important to have one-to-one contact with each of your children on a regular basis so that they know how special they are to you. To achieve this, you will need to manage your time and work on developing a network of supportive friends, extended family, and professionals to help you out when you need it. Finally, it is important to reinforce to your children that people in a family should take care of each other. There are many good books on this subject in the children's section of larger bookstores or the public library suitable for reading with your other children. There are also sibling support groups that may be helpful.

TELLING FRIENDS AND CO-WORKERS

Some friends and co-workers may be uncomfortable listening to you speak about your child with a disability. You can set the tone for an interaction by briefly mentioning the disability if needed: "Kara's gotten to love this playground. The other kids take turns pushing her wheelchair through leaf piles, and she draws pictures in the sandbox with a long stick." Or, you may discover a co-worker with whom you have more in common than previously suspected. If you talk openly, others will usually become more comfortable and able to talk with you and be supportive. Unfortunately, however, this is not always the case. The most important things to keep in mind are your own need for ongoing contact with others who are able to listen sympathetically and your effort to be nonjudgmental toward friends and colleagues who may seem uncomfortable hearing about your distress.

FAMILY HEALTH

It is important that each family member get attention and affection: Mother and father individually and together should spend quality time with each child or combination of children, and you and your partner should have time together without any of the children. In addition, each parent needs some "quiet time" to him- or herself. This may involve a hobby, a sport or other leisure activity, or time spent at a house of worship or with friends. Even if you need to tell yourself "I'm taking this break so that when I come back, I can be a more effective parent" (rather than simply say "I've earned a rest"), by all means do so!

"Should I go back to work?" is a question frequently asked by mothers. Experience has shown that mothers who feel personally fulfilled through their job or career make more effective parents than mothers who have sacrificed their own lives out of a sense of obligation that they "must" stay home with their children. It must be recognized, however, that child care is sometimes more difficult to arrange and that caring for the child with disabilities may place extra demands on the family's time and energy. Ideally, families should make work-related decisions together and share in the responsibilities of caring for the children.

OTHER SUGGESTIONS

Here are some additional suggestions you may find helpful. Celebrate your child's successes — all of them. This recognition is most important to foster your child's social, physical, and psychological development. And surround yourself with positive people who will do the same.

Learn about your child's disability. It is best if both parents go to meetings with the doctor or other health care specialists, especially when diagnostic information is given or treatment plans are developed. If you are a single parent, try to bring a family member, friend, or other advocate with you to help support you and your child and to help you remember the information you are given. If you think of questions before the visit, write them down and take them with you to the visit. Consider using a tape recorder during the session, and ask for a copy of the report generated from the visit. Read up on the disability, attend lectures, search the web, and ask questions.

Seek help when needed, even if you never did before, but be specific about what you need. Get involved in parent support and information groups through your child's early intervention program, the medical center where your child may have been diagnosed, or through regional or national programs specific to your child's disorder.

Learn about local and national organizations that can keep you updated regarding diagnostic and therapeutic information specific to your child's problems. Publications such as Exceptional Parent (a general magazine for parents of children with disabilities) and reputable sites on the web, such as http://www.familyvillage.wisc.edu and http://www.pacer.org, provide useful information (see the Suggested Readings and Resources at the end of this book for more publications and organizations). Remember, however, to cross-check information you get from the web because it is not always accurate.

Learn to be an advocate for your child; get active and speak out. Advocacy may include involvement with your local school or medical center. Work with others to benefit not only your child but all children with special needs. But be kind to yourself when you discover that you are very motivated and active at one time and not at another. These ups and downs are to be expected. Listen to your body and your spirit so that you don't overwork them.

Excerpted from chapter 1 of When Your Child Has a Disability: The Complete Sourcebook of Daily and Medical Care, Revised Edition, edited by Mark L. Batshaw, M.D.

Copyright © 2001 by Paul H. Brookes Publishing Co. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

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

Editorial Reviews

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.

Allison Martin

Well written . . . and useful to parents.

parent and psychoeducational therapist, TEACH Center, University of North Carolina, Chapel Hill - Christine Reagan

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.

parent of a child with a disability - Joan Kilburn

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.

Journal of Genetic Counseling

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.

Division for Physical and Health Disabilities Journal of the Council for Exceptional Children

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.

Support for Families of Children with Disabilities

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)

Booknews