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Babies with Down Syndrome

A New Parents' Guide
Edited by Susan J. Skallerup
Foreword by Mitchell Levitz


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isbn# 9781890627553
5 1/2" x 8 1/2"
358 pages
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"*This book was originally published in 1985 because so little accurate and positive information on Down syndrome was available. Revised for the first time in 13 years and featuring four new chapter authors, it covers information that will be most helpful for families with children from birth to age five. Including the experiences and advice of parents, this should be one of the first books parents read upon receiving their child’s diagnosis. The contributors—educators, medical professionals, adults with Down syndrome, and, primarily, parents of children with Down syndrome—along with editor Skallerup, mother of a child with Down syndrome, define Down syndrome and discuss adjusting to your baby, medical concerns and treatments (for example, 40 to 60 percent have some type of heart defect), daily care, family life, postnatal development, the importance of early intervention, and legal rights and hurdles. Highly recommended for parenting collections in public libraries."
-Library Journal, *starred review, October 1, 2008

"The life of a child born with Down syndrome today will be tremendously different than that of a child with Down syndrome born 20 or even 10 years ago. Medical, educational, and societal advances have enabled many individuals with Down syndrome to access the same life experiences as their typically developing peers. The book, Babies with Down Syndrome: A New Parents’ Guide, 3rd Edition edited by Susan Skallerup provides families with a foundation on which they can build a joyful and productive life for their child with Down syndrome.

The book begins with a foreword by Mitchell Levitz, a 38-year-old man with Down syndrome who is a published author, self advocate, and currently serves on the Board of Directors for the National Down Syndrome Society. He speaks directly to parents describing his life and the factors he attributes to his success. Mitchell’s insights certainly provide new families with a vision of what their future might hold. This is followed by the Introduction, written by Skallerup, who eloquently captures the thoughts of all parents with the time machine analogy. So many parents try to look back, anxiously considering what they could have done differently, while at the same time, asking themselves and others, 'What will the future hold?' Skallerup addresses this issue immediately, providing personal examples that illustrate how impossible it is to predict the future. She then identifies the purpose of this book: to provide parents with '...a trustworthy knowledgeable guide...' (p. xv) so they can explore what having a child with Down syndrome means for them and their families.

Drawing upon leaders within several different disciplines, this book provides state of the art, evidence-based information for families. Although the chapters cover broad areas, they target the most pressing issues for new parents. Chapter 1, What is Down Syndrome, by Chahira Kozma, is most valuable, providing clear and factual information about this chromosome disorder. Although this information can be difficult for new parents to process, she clearly describes the basics of genetics and the cause of Down syndrome, effectively using illustrations. The issues that Marilyn Trainer tackles in Chapter 2, Adjusting to Your Baby, are without doubt the hardest issues facing new parents. However, her honesty and forthrightness are priceless, informing families that others have traveled the same path. Her point '...I caution, time is on your side' (p. 49) rings true -- in so many cases, families do lead the life they dreamed and proclaim it was enhanced as a result of their child with Down syndrome.

Associated with Down syndrome is a compendium of medical concerns overviewed in Chapter 3, by Len Leshin. Each is addressed briefly, but with enough information that families can gain a general sense of the condition as well as identify signs or symptoms associated with it. Although most of the issues addressed in Chapter 4, The Daily Care of Your Baby with Down Syndrome (written by Riley & Farley), are the same associated with typically developing children, issues of particular importance to children with Down syndrome are identified (e.g., feeding, weight gain, constipation). There is a section in Chapter 5, Family Life with your Baby that offers suggestions for disciplining a child with Down syndrome. Although, I commend Jarrett's mention of a functional behavior assessment, a more detailed discussion earlier in this section would likely better prepare parents to address challenging behaviors as they arise. However, the section of this chapter addressing the concerns of siblings, not only identifying their perceptions at different ages, but provides parents with excellent information regarding how to communicate with and balance the needs of their other children.

In Chapter 6, Sue Buckley describes the development of babies with Down syndrome concisely, based on empirical evidence, and in the absence of jargon. While identifying differences in development, she makes clear that in order for children with Down syndrome to meet their full potential, their needs must be met within an '...inclusive world.' (p. 193). For so many families residing in communities where segregation is routine, this plants an early seed that their children will benefit from inclusive opportunities. Early intervention is the focus of Chapter 7. Mary Wilt walks the family through this process, describing the different professionals who may be part of the IFSP team as well as the process for evaluation and IFSP development. The description of several approaches to service provision is exceptional, since many communities continue to rely upon an outdated model of service delivery. This information provides parents with a necessary tool to begin to advocate for more effective intervention models.

Although it is likely that new parents will not fully appreciate it, the final chapter, Legal Rights and Hurdles by Jo Ann Simons will likely be the most valuable. Unfortunately, the current state of affairs in far too many communities is that service providers fail to adhere to federal legislation, resulting in children with Down syndrome being prevented from accessing their civil rights. Although great strides have been made, we still have a long way to go before all children with Down syndrome access the same opportunities as those of us without an extra 21st chromosome.

In summary, the book Babies with Down Syndrome: A New Parents’ Guide, 3rd Edition is a great resource not only for new parents but for practitioners interested in gaining information and an understanding of the perspectives of parents. With respect to the purpose of this book, to provide parents with a '...a trustworthy knowledgeable guide' (p. xv), I believe Skallerup has met her goal."
-Research and Practices for Persons with Severe Disabilites Journal

"Most Down Syndrome News readers are familiar with an earlier edition of this book, as it is the first book that many new and prospective parents read when they find out their baby has DS. This latest edition keeps the same familiar format: good, factual information mixed with appealing photos and parent statements.

The information throughout has been updated. Half of the chapters have new author experts many of whom are themselves parents of children with DS who know how overwhelming it can be to take in so much new information all at once and they write with a gentle tone.

I remember shedding lots of tears when I read the second edition of this book back in 1996 when Marion was born. It was a very different experience reading this as the mom of an almost (yikes!) 13-year-old. It continues to be a good, positive introduction and a nice refresher for this old-timer."
-Down Syndrome News, Volume 31, #7

"Down syndrome is one of the most common congenital disorders and occurs in about 1 in 733 births in the U.S. annually, or in about six thousand babies. Many myths and stereotypes still prevail about the limitations and future for children with Down syndrome. The purpose of this book is to provide parents with the facts and to offer encouragement that there is a bright and healthy future for their child with Down syndrome.

Babies with Down Syndrome is an indispensable guide to inform and support parents raising and caring for children with Down syndrome through age five. First published in 1985, the third edition has been completely updated and incorporates the latest research, practical information, and feedback from parents. Contributors include a range of medical professionals, as well as parent-professionals--writers, case workers, social workers, etc., parents of Down syndrome children, who are active in raising awareness and optimism about this disability. The book sets a parent friendly tone: it begins with short essays by an adult with Down syndrome and the editor, herself the mother of a Down syndrome child. It covers everything that parents need to know: an overview of Down syndrome, adjusting to your baby, medical concerns, daily care, family life, development, early intervention, land legal rights and hurdles.

Babies with Down Syndrome is highly recommended for consumer health information collections. It is clearly written and has a compassionate tone that draws the audience in. while it is designed primarily as a resource for parents, it will also be of benefit to the teachers and therapists who work with very young Down syndrome. The 'extras' include a reprint of the inspiring essay Welcome to Holland, an extensive annotated glossary and resource guide, detailed background on contributors, and an index.

On a personal note, I have a 33 year-old Down syndrome nephew who thrives and continues to be a joy to his family."
-CAPHIS Consumer Connections

"The third edition of Babies with Down syndrome was written by parents, professionals and parent-professionals, as a guide for families of children with Down syndrome, from birth until five years of age. The book contains basic information about the syndrome, tips about daily care of the baby, early intervention, learning and education, and legal rights. At the end of each chapter there is a section with impressions and commentaries from parents. Parents and family members will find these statements useful and inspiring.

Even though it is a guide written mostly for parents, the book also provides valuable information for professionals who are working with the child and the family, in particular, the chapter on the development of babies with Down syndrome. Recent research in this field has revealed important information on development and the factors that influence progress. This section contains knowledge that would help parents, therapists and educators set up more effective environments and learning opportunities for babies and toddlers with Down syndrome, so that they can reach their full potential and lead productive lives.

The general tone of the guide is compassionate and hopeful. However, new parents may find that chapters One and Three, which describe the syndrome and the possible medical, concerns, contain genetic and medical information too detailed to digest. Moreover, the tone of these chapters is sometimes pessimistic. It might be helpful for parents to read these chapters later, or as consultation guides.

Finally, there is a useful, up-to-date resource guide. Families will find these resources helpful in their daily lives."
-Newsline, Fall 2009 (Federation for Children with Special Needs)

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