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Parent's Guide to Down Syndrome: Toward a Brighter Future

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This text teaches not just what to expect as your child with Down syndrome grows but what you can hope for in terms of health, schooling, and your child's life in the community. It includes reassuring guidance, and straightforward explanations.

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Overview

This text teaches not just what to expect as your child with Down syndrome grows but what you can hope for in terms of health, schooling, and your child's life in the community. It includes reassuring guidance, and straightforward explanations.

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Editorial Reviews

Booknews
New edition of a 1978 collection of articles clarifying and giving guidance on parenting Down syndrome children. The work is multi- authored although LC did not catalog the title as the main entry. Annotation c. Book News, Inc., Portland, OR (booknews.com)
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Product Details

  • ISBN-13: 9781557660602
  • Publisher: Brookes, Paul H. Publishing Company
  • Publication date: 8/28/1990
  • Pages: 336
  • Product dimensions: 5.49 (w) x 8.17 (h) x 0.63 (d)

Meet the Author

Siegfried M. Pueschel, M.D., Ph.D., J.D., M.P.H., studied medicine in Germany and graduated from the Medical Academy of Düsseldorf in 1960. He then pursued his postgraduate studies at The Children's Hospital in Boston, Massachusetts, and the Montreal Children's Hospital in Quebec, Canada. In 1967, he earned a Master of Public Health degree from the Harvard School of Public Health in Boston, Massachusetts; in 1985, he was awarded a doctoral degree in developmental psychology from the University of Rhode Island in Kingston; and in 1996, he was granted a Doctor of Juris degree from the Southern New England School of Law in North Dartmouth, Massachusetts. From 1967 to 1975, Dr. Pueschel worked at the Developmental Evaluation Clinic of The Children's Hospital in Boston. There he became director of the first Down Syndrome Program and provided leadership to the PKU and Inborn Errors of Metabolism Program. In 1975, Dr. Pueschel was appointed director of the Child Development Center at Rhode Island Hospital in Providence. He continued to pursue his interests in clinical activities, research, and teaching in the fields of developmental disabilities, biochemical genetics, and chromosome abnormalities. Dr. Pueschel is certified by the American Board of Pediatrics and is a Diplomate of the American Board of Medical Genetics. His academic appointments include Lecturer in Pediatrics, Harvard Medical School, and Professor of Pediatrics, Brown University in Providence, Rhode Island.

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Read an Excerpt


Excerpted from Chapter 1 of A Parent's Guide to Down Syndrome: Toward A Brighter Future, Revised Edition, by Siegfried M. Pueschel, M.D., Ph.D., J.D., M.P.H., with invited contributors.

Copyright © 2001 by Paul H. Brookes Publishing Co. All rights reserved.

From Parent to Parent

As we begin the new millennium, human expectations for the quality of life are higher than every before. Hopes and dreams soar at the impending birth of a new baby. When we are told, however, that our baby has Down syndrome and we must reshape our hopes and dreams, our original parental sorrows remain unchanged. It is perfectly normal to grieve.

Of all the joys and sorrows of a lifetime, no event was ever more traumatic for my husband and me than the birth of Martha, our daughter who has Down syndrome. We were shocked, shattered, and bewildered. No woman ever really expects to give birth to a child with disabilities. Prior to Martha's birth, mental retardation had simply been a statistic to us — something that happens to someone else; yet no child has ever taught us so much or brought us so much love.

Today, because of the advances in prenatal testing and screening, it is not unusual for parents to know prior to the birth of their baby that they will have a child with Down syndrome. Many choose to continue the pregnancy, realizing that no child, at any stage in life, comes with a written guarantee of perfection. These are parent of great courage, and in the months preceding their child's birth, many resources are available to them to help plan for their child's optimal care. They may wish to speak to other parents and be assured that it is alright to grieve for the loss of the child of their dreams.

If you are new parent of a baby with Down syndrome, then I can share the deep sorrow you feel in every fiber of your being, the aching disappointment, the hurt pride, and the terrible fear of the unknown. But I can tell you from personal experiences that having known this ultimate sorrow, you will soon learn to cope better with every phase of life. You will be happy once again, and through your child you will receive undreamed of love, joy, and satisfaction.

If you are the parent of an older child with Down syndrome, then you have probably already formed a special bond with other parents of children with special needs, parents who have shared the same intense joys and sorrows. If you are a special educator or work in human services, then you, too, must be elated at the progress that has occurred for individuals with mental retardation. Your continued encouragement and reinforcement and your willingness to see each child as a unique and valuable human being can add immeasurable dimensions to the lives of children with special needs and to the lives of their families.

Life cannot remain the same. The decisions to choose a profession or a new career, to marry, or to have a child — all important milestones in life — imply change. The addition of a child with Down syndrome to a family precipitates even more rapid change, but the loving support you will meet at each phase will be an enriching experience.

My first fear was for our marriage. If it had been a shaky commitment, our new child could have provided us with an opportunity to blame each other or to make excuses for never finding time for self, each other, careers, or friends. But if you work at it, this special child can be the opportunity for better communication and for finding new courage and love in your partner. Personally, I have never appreciated my husband so much; the feeling of mutual support has enhanced our marriage.

I feared for our other four children. I wanted to give each of them enough time so that they would not feel neglected or harbor unspoken feelings of shame or resentment. Their response, their potential for love, has overwhelmed us.

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Table of Contents

About the Authors
Acknowledgments
Introduction
1 From Parent to Parent 1
2 A Brief History of Down Syndrome 9
3 Exploring the Causes of Down Syndrome 17
4 Prenatal Diagnosis and Genetic Counseling 29
5 A Child with Down Syndrome Is Born 41
6 Physical Features of the Child 51
7 Medical Concerns and Health Issues 59
8 Treatment Approaches 75
9 What to Expect as Your Child Develops 83
10 Feeding the Young Child 97
11 Early Developmental Stimulation 105
12 Stimulating the Child's Gross Motor Development 117
13 Fine Motor Skills and Play: The Road to Cognitive Learning 141
14 Raising a Child with Down Syndrome 157
15 Developing Communication Skills 169
16 Preschool and Kindergarten: A Time of Enlightenment and Achievement 191
17 Education from Childhood Through Adolescence 203
18 Adolescence and the Transition to Adulthood 237
19 Recreation: Key to a More Fulfilling Quality to Community Life 247
20 Working in the Community Through Supported Employment: It's All About Choices 271
21 Does Parenting Ever End? Experiences of Parents of Adults with Down Syndrome 293
22 Biomedical Research and the Future of Down Syndrome 303
Epilogue 321
Index 323
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