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Babies with Down Syndrome: A New Parents Guide.

Babies with Down Syndrome: A New Parents Guide "Most importantly, this book will tell you that kids with Down syndrome are kids first and foremost." This upbeat message in the editor's introduction sets the stage for eight chapters that prove appealing and informative for the new paent of a child with Down syndrome.

Our review is offered from an educational perspective, as a teacher of young children with handicaps and a teacher of special educators with an early childhood emphasis.

Chapter One, by Dr. Chahira Kozma, M.D., an Assistant Professor of Pediatrics and a Clinical Geneticist at Georgetown University Hospital, offers clear and accurate information about how chromosomal abnormalities occur. While there are physiological and anatomical features that characterize Down syndrome, not all babies with the condition show all of these features. Babies with Down syndrome resemble their parents because they have their mothers' and fathers' genetic material in their own cells. Kozma addresses new parents' concerns about the risk of having another baby with Down syndrome, dealing with their child's sexuality, and planning for their child's independent living as an adult.

Marilyn Trainer, a parent and advocate for children with Down syndrome, wrote Chapter Two primarily to help parents adjust to their new baby. Trainer describes both the pain of "getting the news" and struggling with it emotionally and also the pride parents will take in their child's accomplishments. She emphasizes the positive, telling parents not to despair but to focus on what their baby can do. Hard work, she says, will pay off and, gradually, "far from the grief and despair you felt at her birth, you will feel joy and pride."

We appreciate Trainer's positive approach but disagree with her when she advises that all parents should keep their babies who have down syndrome. We have found that some parents (very few) do not emotionally accept their baby. After parents receive accurate education and counseling, adoption may turn out to be the best solution for these parents, the baby, and the family. In fact, an adoptive family whose love is sure and constant is to be preferred to the biological family if love there is unsure and intermittent. Parents who make the decision to give up their child, after a sincere struggle to accept him or her, should, of course, be helped to adapt to their decision. We agree strongly with Trainer that large residential institutions are not appropriate environments for babies with Down syndrome. Indeed, many states recognize this and will not admit an infant with Down syndrome to a large state institution except as a temporary placement in an extreme emergency.

In Chapter Three, Chahira Kozma explains that children with Down syndrome are more prone than the normal population to heart defects, intestinal problems, respiratory infections, and impairments in vision, hearing, thyroid function and problems with weight control. She describes how many of these problems respond well to medical treatment. She also points out the relatively new finding that 10 to 20% of children with Down syndrome have instability in the upper two vertebrae of the spine which may require surgery. When this condition goes undetected and/or untreated, inappropriate activity could cause paralysis.

Kozma closes this chapter by asserting that health care should be pursued vigorously, suggesting that parents ask questions, avoid excessive waiting, batch doctor visits, watch out for outdated opinions, and keep a notebook. This is sound advice for the new parent of a child with Down syndrome, who is bound to feel overwhelmed with problems for awhile.

A small omission in this chapter is that parents need to be made aware that some forms of medical care are extremely expensive. For parents who have high incomes or excellent medical insurance, this may not be a problem, but for families with limited resources cost may loom large. Parents may need to seek professional advice in balancing their need to do everything within reason for their child with Down syndrome without exhausting themselves and their resources (and possibly theirown and their families' mental health). This "balance point" will difer for each family.

"The Daily Care of Your Baby," Chapter Four, offers good information on child discipline, eating, toileting, hygiene, exercise, sleep and other practical matters. The authors, Dr. Elliot Gersh, M. D., Director of Developmental Pediatrics, and Joan Riley, R. N., M. S. M., a registered nurse and clinical instructor, stress that the baby with Down syndrome needs a consistent routine. They note that some children with Down syndrome have difficulty eating because of poorly developed motor skills, and discuss the importance of monitoring the child's weight and the effects of low muscle tone on aggravating the problem of constipation. They caution that toilet training may be delayed and that special care may be needed for maintaining healthy eyes, nose, ears, teeth, and skin.

We think that the authors shold have emphasized specific, everyday methods for promoting socialization and self-control, such as how to be veryspecific with guiding words, how to use positive reinforcement, how to minimize parent-child "combat," etc. Pros and cons associated with the parents' working outside the home also have been discussed.

Chapter Five discusses how to help a child with Down syndrome become a full-fleged part of the family. Marian Jarrett, Ed. D., director of an infant progtram, writes that the main goal for parents is to integrate their child into the family as a valued, contributing member. She encourages parents to consult with other parents as well as with a variety of professionals. Jarrett alludes to the possibility that some parents may want to consider adoption or foster care for their child.

Chapter Six helps parents understand their baby's preschool years. Written by French McConnaughey, M.Ed., Director of Development at the Glenbrook Day School in Rockville, Maryland, the chapter's helpful graphs illustrate how children with Down syndrome who receive good early intervention often make greater gains than children who are not in an early intervention program. After describing the sequence of development for normal children the author notes that children with Down syndrome may have specific characteristics that hinder development. He points out that through knowledge of these possible "stumbling blocks" parents can work with teachers to help their child overcome them or minimize them while maximizing the child's strengths.

Chapter Seven, "Teaching Your Baby With Down Syndrome: An Introduction to Early Intervention," is of particular importance for early educators. Author Linda Diamond, M.Ed., an Infant Development Specialist and Family Coordinator, explains early intervention as "planned, specific, conscious and specialized ways of interacting with a baby to enhance development . . . which requires highly trained specialists who can work with you and your baby to maximize his early development." Diamond explains that the child needs to be assessed carefully to determine service needs, with the parent participating as a key part of the assessment process. She stresses that intervention is a parent-professional partnership, where the parent is the primary teacher and the specialists are involved as resources to help determine the best approaches. While we agree essentially with this point of view, we wish to caution that parents may interpret "primary teacher" to mean "heavy-duty, direct-teaching teacher." There are, as she notes, many viable roles for parents to take as educators, based on their individual temperaments, talents, schedules, liking for structure, etc. All of these factors need to be taken into consideration in assisting parents to develop an appropriate intervention role.

Diamond emphasizes mainstreaming as an important consideration in the intervention process and suggests that parents may choose to accomplish mainstreaming in informal ways, particularly until the baby is 2 years old, and that a decision to mainstream is an individual decision. We agree with this perspective, but tilt strongly in favor of mainstreaming, emphasizing the importance of several considerations: (a) that the child with Down syndrome needs to be helped to develop skill and to show socialization progress during mainstreaming, (b) that nonhandicapped classmates need to be carefully prepared to interact positively, as friends, (c) that the teacher needs to learn how to foster and maintain positive child-to-child interactions, and (d) that the curriculum is set to maximize each child's needs regardless of ability level. At first blush, this may sound difficult. However, in many instances, it will be achieved relatively easily because children with Down syndrome are often socialized readily, and nonhandicapped children are typically highly motivated to be "special friends." As a postscript to the topic of mainstreaming, our research leads us to recommend that children with Down syndrome be mainstreamed with nonhandicapped children who are of the same age or slightly older. A chronological age match seems to be a better criterion for promoting peer friendship than mental age matching.

James E. Kaplan and Ralph J. Moore, partners in the Washington, D.C., law firm of Shea and Gardner, wrote Chapter Eight, "Legal Rights and Hurdles: Being a Good Advocate for Your Child." The purpose of this chapter is to "provide parents with accurate and authoritative information about the legal aspects of having a child with Down syndrome." These authors discuss how education programs and services can be provided, not only during the school years but when the person with Down syndrome becomes an adult. Cost-of-care liability, eligibility for government benefits, and estate planning are addressed. We applaud the inclusion of a future-oriented chapter since parents of children with Down syndrome must plan for their child's entire lifespan.

Several valuable features are included in the book; for example, a glossary of terms, a reading list that gives supplemental information chapter-by-chapter, and a list of organizations that can provide support to parents. Additionally, photographs of babies and preschool children with Down syndrome, and charts explaining such things as meiotic division in chromosomes and developmental milestones, are presented in an informative and appealing manner. We particularly appreciate statements written by parents about their feelings on having and rearing a child with Down syndrome.

Overall, Babies With Down Syndrome will be a valuable resource for new parents. Many profoundly important questions asked by a new mother or father are addressed, suchas "Will I ever be happy again?" Above all, this book conveys the message that through love and judicious intervention, and the support of other parents, professionals, and organizations, the experience of nurturing a baby with Down syndrome can be rewarding--even fulfilling.

K. Strag-Gunderson. Kensington, MD: Woodbine House, 1986. 250 pp., $9.95 (paper).
COPYRIGHT 1988 Council for Exceptional Children
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Copyright 1988 Gale, Cengage Learning. All rights reserved.

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Author:Rynders, John E.; Arko, Susan C.
Publication:Exceptional Children
Article Type:Book Review
Date:Oct 1, 1988
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