When Your Child Has a Disability: The Complete Sourcebook of Daily and Medical Care - Softcover

Softcover

ISBN 10: 1557664722 ISBN 13: 9781557664723

Verlag: Brookes Publishing Co, 2000

Inhaltsangabe

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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Über die Autorin bzw. den Autor

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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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...

Details zur Ausgabe

• Verlag: Brookes Publishing Co
• Erscheinungsdatum: 2000
• Sprache: Englisch
• ISBN 10: 1557664722
• ISBN 13: 9781557664723
• Einband: Taschenbuch
• Auflage: 2
• Anzahl der Seiten: 500
• Herausgeber: Batshaw Mark L.
• Kontakt zum Hersteller: Nicht verfügbar
• Verantwortliche Person: Nicht verfügbar