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. We have written this information keeping in mind our own diverse experiences when our 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 1000 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 5000 babies with Down Syndrome are born in the United States every year. The national population of individuals with Down Syndrome is estimated to be 250,000.
About 80% of babies with Down Syndrome are born to mothers under the age of 35. About 1 in 400 babies born to women over 35 have Down Syndrome.
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 benefit from the same care, attention, and inclusion in community life that help every child grow. As with all children, quality education in neighborhood schools and preschools or at home is important to provide the child with Down Syndrome 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. 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 Down Syndrome sometime mask a range of abilities and talents.
Although babies and children with Down Syndrome are early customers for extensive health evaluations, infant stimulation, physical therapy, communication enhancement, developmental evaluations, and other professional intervention, it is important to keep in mind that every child deserves to be surrounded by people who love, respect and admire all children.
Individuals with Down Syndrome may be identified by numerous physical attributes which 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.
It is estimated that 3 to 5% have Translocation, where the extra chromosome 21 broke off and became attached to another chromosome, and 1 to 3% 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 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, 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 Down Syndrome who are faithfully portrayed as multi-dimensional young adults. A young man with Down Syndrome is the winner of the 1996 Best Actor honor at Cannes.
Thousands of young people with Down Syndrome across the country 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 coworkers, 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 some 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. It is a small part of your child’s genetic makeup. Staying integrated in your mainstream 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. They grow up fast.
National organizations will send free, accurate information about Down Syndrome to you and other family members. They have yearly conferences, newsletters, and lists of local parent groups who you may wish to contact for local resources and information.
You may also read or join the down-syn list serv or newsgroup, where families, concerned professionals and other advocates discuss the latest issues, developments and accomplishments of people with DS. I suggest the digest version or newsgroup, as over 600 individuals subscribe and there can be numerous emails on every topic each day.
Welcoming Babies with Down Syndrome - Translations
Information compiled, edited and written by Pamela Wilson, translations written by Carlos Osorio and Benoit Lanthemann
Carlos Osorio - Spanish - Bienvenidos Bebes con Sindrome de Down
http://www.bellaonline.com/articles/art32537.asp
Benoit Lanthemann - French - Accueillir les bébé trisomiques
http://www.bellaonline.com/articles/art32538.asp
You Are Here
English
http://www.bellaonline.com/articles/art32534.asp
For one week only, February 24–March 2, 2008, save up to 20% on rarely discounted Britax car seats, strollers and more through this link to Amazon.com:
Britax Discount
Prenatal Diagnosis - Down Syndrome
http://www.bellaonline.com/articles/art32686.asp
A Brand New Baby with Down Syndrome
http://www.bellaonline.com/articles/art51264.asp
New Mother - Newly Diagnosed Child
http://www.bellaonline.com/articles/art33557.asp
Children Like Grace - Down Syndrome - Four Generations
http://www.guardian.co.uk/medicine/story/0,,2183066,00.html
Ordering Amazon.com Gift Certificates
here will help support the Special Needs Children websiteGifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives
Adventures In The Mainstream: Coming Of Age With Down Syndrome
Books on Down Syndrome at Amazon.com
Babies With Down Syndrome: A New Parent's Guide by Karen Stray-Gundersen
Down Syndrome - The First 18 Months (DVD)
Early Communication Skills for Children With Down Syndrome: A Guide for Parents and Professionals by Libby Kumin
The Down Syndrome Nutrition Handbook - A Guide to Promoting Healthy Lifestyles by Joan Guthrie Medlen, 2006
Down Syndrome The First 18 Months (VHS)
Down Syndrome: The First 18 Months
Young Woman with Down Syndrome a Role Model for Neighbors
Health issues don’t stop New Almaden citizen from living life to the fullest
http://www.almadentimes.com/041306/health_iss.htm
Hiking for a cure
http://www.almadentimes.com/apr1306.htm
More Than a Mom - Living a Full and Balanced Life When Your Child Has Special Needs
Sign with your Baby
Early Intervention for Developmental Delays
http://www.bellaonline.com/articles/art35443.asp
Down Syndrome Awareness
http://www.bellaonline.com/articles/art34845.asp
Down Syndrome and the Acting Gene
http://www.bellaonline.com/articles/art34198.asp
Down Syndrome - Mosaic Down Syndrome (MDS)
http://www.bellaonline.com/articles/art33207.asp
His Life is Definitely Not A Struggle Mother Interview
Penn State Daily Collegian Online
College is About Learning Experiences
Basketball, Down syndrome and Teamwork
http://www.collegian.psu.edu/archive/2007/04/04
Down Syndrome Research and Treatment Foundation
Adopt A Mouse Program
Health Care Guidelines: Down Syndrome
http://www.ds-health.com/health99.htm
Down Syndrome Health Issues
Dr Len Leshin
http://www.ds-health.com
Disability Solutions: Down Syndrome
http://www.disabilitysolutions.org
Family Village DS Resources
http://www.familyvillage.wisc.edu:8000/lib_down.htm
Down Syndrome Discussion Group Archives
Down-syn Email List
To sample the newsgroup, try the Google Down-Syn Newsgroup
National Down Syndrome Society
http://www.ndss.org
Dad's Admiration Makes Strong Bond with Daughter
NPR Story Corps Booth in Kansas City Mo
http://www.npr.org/templates/story/story.php?storyId=6594348&sc=emaf
Dads, Complicated Pregnancies and Childbirth
http://www.bellaonline.com/articles/art47718.asp
Fathers of Children with Special Needs
http://www.bellaonline.com/articles/art32675.asp
Sibling Support and Rivalry - Brothers and Sisters of Children with Special Needs
http://www.bellaonline.com/articles/art33375.asp
Starting a Parent Support Group
Is Diversity Like A New Box of Crayons?
Lifelong Inclusion of Children with Disabilities
http://www.bellaonline.com/articles/art5144.asp
Reflux - Pediatric GERD, Infant GER and EER
http://www.bellaonline.com/articles/art3730.asp
Celiac Disease in Children
http://www.bellaonline.com/articles/art21075.asp
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National Down Syndrome Congress Yearly Convention
Mosaic Down Syndrome - Bella Online
International Mosaic Down Syndrome Association
Explaining Down Syndrome to Children
Stanford Down Syndrome Research News & Views
Cued Speech
Genetic Counseling Information about Down Syndrome
Risk and Recurrence Risk of Down Syndrome by Dr. Paul Benke, Virginia Carver and Roger Donahue
http://www.ds-health.com/benke.htm
For more information on babies, children and adults with Down syndrome, you can find these books at Amazon.com, your local bookstore or at the publishers' websites.
Recess Skills for Children with Special Needs
Music Education and Music Therapy
http://www.bellaonline.com/articles/art46397.asp
Art and Self Expression for Children with Special Needs
Inclusion of Children with Disabilities Benefits Classmates
Sue Buckley -
Reflections on twenty years of scientific research
Motivation and learning styles in young children with Down syndrome
Children’s learning partners: Attitudes and expectations
Development in children with Down syndrome
Memory Training for Children with Down Syndrome
Using the Numicon approach to teaching number - practical experience, theoretical background, research and evaluation
The education of individuals with Down syndrome A review of educational provision and outcomes in the United Kingdom
Reading before Talking Learning about mental abilities from children with Down syndrome
http://www.down-syndrome.net/library/papers/
Early Childhood Education and the NAEYC
http://www.bellaonline.com/articles/art53251.asp
Transition to Preschool from Early Intervention
http://www.bellaonline.com/articles/art49696.asp
Kindergarten Transition
http://www.bellaonline.com/articles/art49718.asp
Birth to Kindergarten Inclusion - Down Syndrome
Thoughts From the Middle of the Night
http://www.bellaonline.com/articles/art32533.asp
Universal Design for Learning - Access to General Education Curriculum
http://www.bellaonline.com/articles/art50363.asp
Preschool and the Child with Down Syndrome
www.he.net/~altonweb/cs/downsyndrome/gibson.html
IEP Preparation - Teacher Support
http://www.bellaonline.com/articles/art44746.asp
IEP Goals for Children with Special Needs
http://www.bellaonline.com/articles/art4330.asp
Humor - Preparing for the IEP Meeting
http://www.bellaonline.com/articles/art32971.asp
Writing Measurable IEP Goals and Objectives by Dr. Barbara Bateman and Dr. Cynthia Herr
Down Syndrome and Misinformed "Experts"
Boston Globe - By Beverly Beckham March 2, 2008
A pint-sized ambassador against misinformation
http://www.boston.com/news/local/articles/2008/03/02/a_pint_sized_ambassador_against_misinformation/
YouTube Video for March 21 World Down Syndrome Day
Aim High Enough
http://www.youtube.com/watch?v=iq4caDNd7mw
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