Down Syndrome Outreach

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Welcoming Babies with Down syndrome

[Photo of Down Syndrome babies]
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.

What is Down syndrome?

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, gardening and travel to baseball, music, and beyond.

[Dads with DS babies] 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. Down syndrome 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.

Types of Down syndrome

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.

Care of Children with Down syndrome

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 the memory, insight, creativity, and cleverness of your child will often surprise you. 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 (see resources section below) for individuals with DS that you may wish to pass on to your child's physician.

Future for Children with Down syndrome

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.

A Final Note

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.

[Family Photo] 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.

Down Syndrome information compiled and edited by Pam Wilson, Washington State

The images on these pages appear courtesy of the individuals pictured and may not be used for any purpose without the express written consent of The Arc of Whatcom County.

Resources & Links

Local Services

Down Syndrome Outreach 360-715-0170x307
Parent to Parent 360-255-6402

Organizations

The National Down Syndrome Congress
1-800-232-6372
ndsccenter.org

The National Down Syndrome Society
1-800-221-4602
ndss.org

Internet

Family Village
Down Syndrome Web Page
Disability Solutions
Down Syndrome: Health Issues

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The Arc of Whatcom County

Address: 2602 McLeod Rd., Bellingham, WA 98225

Phone: 360-715-0170

Toll-free: 1-866-284-8444

Fax: 360-715-8522

E-mail: admin@arcwhatcom.org