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Welcoming Babies with Down Syndromeby Pam Wilson |
CreditsSourceNPIN Parent NewsContentsPublications and TapesInternet Resources Online Discussion List ForumsLearning and Other DisabilitiesRelated ArticlesGeneral Information about Down SyndromeChildren With Disabilities: Understanding Sibling Issues |
Our guest author for this month's Community Spotlight is a parent of two children. Her teenage son has Down Syndrome (DS) and juvenile diabetes. She feels especially fortunate that she received valuable information and support at the time her son was born because her obstetrician was also raising a son with DS. She hopes that this article and the resources provided will be helpful for other parents who may be facing the same experiences. If you are welcoming a new baby with Down Syndrome into your family, you probably have many questions and concerns, as do your extended family, friends, and neighbors. I have written this information keeping in mind my own diverse experiences when my children were born with DS. Congratulations on the birth of your baby. We wish you all the best. Down Syndrome is a chromosomal anomaly that occurs in 1.3 per 1,000 births. For some unexplained reason, an error in cell development results in 47 chromosomes rather than the usual 46. The extra gene material slightly changes the orderly development of the body and brain. About 5,000 babies with DS are born in the United States every year. The national population of individuals with DS is estimated to be 250,000. About 80% of babies with DS are born to mothers under the age of 35, and about 1 in 400 babies born to women over 35 have DS. People with Down Syndrome are more like typically developing individuals than they are different. There is great diversity within the population in terms of personality, learning styles, intelligence, appearance, compliance, humor, compassion, congeniality, and attitude. Favorite pastimes vary from person to person and range from reading and gardening to baseball and music, and beyond. Children with Down Syndrome look more like their families than they do one another, have a full complement of emotions and attitudes, are creative and imaginative in play and pranks, and grow up to live independent lives with varying degrees of support and accommodations needed. DS will not be the most interesting thing about your son or daughter as they grow up. Remember that raising any child fills your life with unimaginable delight and difficulties. We can no longer predict how far our children will go. Children with Down Syndrome benefit from the same care, attention, and inclusion in community life that help every child grow. As with all children, high-quality education in neighborhood schools and preschools or at home is important to provide the child with the opportunities that are needed to develop strong academic skills. On standard IQ tests, our sons and daughters with Down Syndrome most often score in the mild to moderate range of mental retardation. However, these tests do not measure many important areas of intelligence, and you will often be surprised by the memory, insight, creativity, and cleverness of your child. The high rate of learning disabilities in students with DS sometimes masks a range of abilities and talents. Individuals with Down Syndrome may be identified by numerous physical attributes that may or may not present themselves in any one individual. Some characteristics are the beautiful almond shaped eyes, with striking Brushfield spots on the irises, a single palmar crease on one or both hands, small features, and exceptional social intelligence. Individuals with DS have a high rate of congenital heart defects (35 to 50%) and should have an echocardiogram within the first two months of life. National organizations provide medical checklists for individuals with DS that you may wish to pass on to your child's physician. There are three major types of Down Syndrome. Your baby is most likely to have Trisomy 21, meaning presence of extra genetic material on the 21st pair of chromosomes resulting from an anomaly in cell division during development of the egg or sperm or during fertilization. About 95% of people with DS have Trisomy 21. About 4% have Translocation, where the extra chromosome 21 broke off and became attached to another chromosome. About 1% have Mosaicism, where only some cells have Trisomy 21. Your child will have more opportunities than a child born with Down Syndrome five years ago. As young people with DS show what they can do with the support of their communities, and as they integrate mainstream programs, more doors open for others. We have seen a TV series starring a talented actor and actress with DS enlighten the general public about the potential of all our children. Two young men have authored a book, Count Us In, Growing Up with Down Syndrome (available at Kidsource BookStore), and impressed audiences across the country at book signings and on talk shows. A fast-paced mystery, Honor Thy Son, by Lou Shaw, features two characters with DS who are faithfully portrayed as multidimensional young adults. A young man with DS is the winner of the 1996 Best Actor award. Across the country, people with DS are quietly going on with their lives without fame or fanfare and transforming their communities by just being there. They have dreams and the determination to reach their goals. They learn in regular classrooms in their neighborhood schools with the children who will one day be their co-workers, neighbors, and adult friends. Young adults hold diverse and meaningful jobs, maintain their own households, and make significant contributions to their communities every day. Allow your family, friends, and neighbors time to learn about Down Syndrome, reminding them if necessary that DS is just a small part of who your child is and will become. Staying integrated in your community is important to your child's development and your peace of mind. Try to get some rest. You are allowed to feel however you feel, and so are others who love you and your baby. Childbirth is hard work; many of your emotions stem from a new life coming into your family. You deserve congratulations and wonderful gifts. Have the good cooks among your family and friends bring over their best meals. Take time to welcome and enjoy your baby—babies grow up fast. These national organizations will send information about Down Syndrome to you and other family members. They have yearly conferences, newsletters, and lists of local parent groups that you may wish to contact for local resources and information. In the United States, contact: The National Down Syndrome Congress The National Down Syndrome Society For information on Mosaic DS, contact: Dr. Colleen Jackson-Cook For more information, resources, and support, you may wish to consult the following resources: |
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Publications and TapesDisability Solutions. A free newsletter about Down Syndrome available in print
as well as online. Your Baby Has Down Syndrome video. $15 per video plus $3.00 shipping /handling. Babies with Down Syndrome, A New Parents' Guide, edited by Karen Stray-Gundersen
Understanding Down Syndrome: An Introduction for Parents, by Cliff Cunningham.
American Edition. 1996. ISBN 1-57129-009-5. Communication Skills in Children with Down Syndrome: A Guide for Parents, by
Libby Kumin. ISBN 0-933149-53-0. Communicating Together Newsletter, edited by Libby Kumin. Before the First Word, by Libby Kumin. Audiotape from the 1995 NDSC convention:
$7 per tape plus $4 s/h. Teaching Reading to Children with Down Syndrome, A Guide for Parents and Teachers, by Patricia Logan Oelwein. ISBN 0-933149-55-7. Down Syndrome Quarterly Newsletter, edited by Samuel J Thios, PhD.
Subscriptions: $24/year (4 issues). Count Us In, by Jason Kingsley and Mitchell Levitz. 1994. Harcourt Brace. ISBN 0-15-622660-x. Hope for the Families: New Directions for Parents, by Robert Perske; illustrated by Martha Perske. Abingdon Press. ISBN 0-687-17380. Down Syndrome: Living and Learning in the Community, edited by Lynn Nadel and Donna Rosenthal; NDSS; Proceedings of the Fifth International DS Conference held in Orlando, FL, in 1993; copyright 1995 by Wiley-Lisss Inc. ISBN 0-471-02201. Teaching Strategies for Children with Down Syndrome: A Resource Guide (K-6), edited by B. Tien and C. Hall. Jointly prepared by the PREP Program and the Ups & Downs Association of Calgary, Alberta. Calgary Down Syndrome Association. Teaching the Child with Down Syndrome: A Guide for Parents and Professionals, by M.J. Hanson. Pro-Ed. ISBN 0-89079-103-1. The Language of Toys: Teaching Communication Skills to Special-Needs Children. A Guide for Parents and Teachers, by Sue Schwartz and Joen E. Heller Miller. 1988. Woodbine House. It Takes Two to Talk: A Parent's Guide to Helping Children Communicate, by A. Manolson. 1992. The Hanen Program. Medical and Surgical Care for Children with Down Syndrome, A Guide for Parents, edited by D.C. Van Dyke and P. Mattheis. Woodbine House. ISBN 0-933149-54-9. Medical Care in Down Syndrome: A Preventative Medicine Approach, by P.T. Rogers and Mary Coleman. Marcel Dekker, Inc. ISBN 0-8247-8648-X. Biomedical Concerns in Persons with Down Syndrome, by S.M. Pueschel and J.K. Pueschel. Paul Brookes Publishing Co. ISBN 1-55766-089-1. Advances in Down Syndrome, edited by Valentine Dmitriev and Patricia Oelwein. Special Child Publications. ISBN 0-87562-092-2. The Psychobiology of Down Syndrome, edited by Lynn Nadel. MIT Press. ISBN 0-262-14043-8. The Development of Language and Reading Skills in Children with Down Syndrome, by Susan Buckley. 1986. Portsmouth Polytechnic. Back to the Table of ContentsInternet ResourcesThe Sibling Support Project National Down Syndrome Congress The National Down Syndrome Society National Association for Down Syndrome (NADS) What's Up with Down Syndrome Down Syndrome Quarterly
Down Syndrome Health Issues Down Syn On-Line Magazine Down Syndrome associations in Western Australia Down Syndrome Home Page Welcoming Babies with Down Syndrome Also available in: Down Syndrome Information for the United Kingdom What's Up with Down's -- Home Page of a teenage boy with Down Syndrome Down Syndrome Health Issues Down Syndrome: Teaching Reading and Language Australian breastfeeding tips page Breastfeeding Advocacy Web page Family Village Project Thoughts from the Middle of the Night Children with Diabetes Web page (DS) Dusty Dutton--Home Page of a young woman with Down Syndrome Down Syndrome Association of Metropolitan Toronto OurKids Web Archive: former postings of the Our-Kids listserv (diverse diagnoses) National Information Center for Children and Youth with Disabilities (NICHCY) Web site: PREP Resource Center (Calgary, Alberta, Canada) San Francisco Bay Area Down Syndrome page Inclusion Press International Home Page Institute on Community Integration -- University of Minnesota TASH: Working in Partnership with Disability Advocates Worldwide The Alliance for Technology Access Center for Studies on Inclusive Education -- United Kingdom Family Village School Inclusive Education Resources Agassiz Elementary School -- Chicago, Illinois Down Syndrome Educational Trust (DownsEd) -- United Kingdom Dolls with Down Syndrome -- USA Online Discussion ListDown-Syn listserv. To subscribe, send an email message to LISTSERV@LISTSERV.NODAK.EDU with no subject in the subject line and the message "subscribe down-syn <your first and last name>." Respond OK to the confirmation message. Back to the Table of ContentsCreditsSpecial thanks to Dr. Len Leshin and Liz Steele for suggestions of book titles. Published monthly by the ERIC Clearinghouse on Elementary and Early Childhood Education, University of Illinois at Urbana-Champaign, Children's Research Center, 51 Gerty Drive, Champaign, IL 61820-7469. This publication was funded by the Office of Educational Research and Improvement, U.S. Department of Education, under contract no. DERR93002007. Opinions expressed in this magazine do not necessarily reflect the positions or policies of the Department of Education. NPIN Coordinator and Parent News Editor: Anne Robertson |
