A few years ago at the Seattle Special Olympics, there were nine contestants for the 100-yard dash. All nine of these children were either physically or mentally disabled. They all gathered at the starting line, and when th gun went off, all went out with the burning desire to run the race to the end and win. One little boy tripped and fell onto the asphalt. He sat there and began to cry. As the other children heard him crying, they began to slow down. All eight of them stopped, turned around, and walked back to the starting line. One little girl with Down Syndrome bent over and kissed the crying boy on the cheek, saying, "This will make it better." Then all nine children linked arms and walked together across the finish line. Everyone in the stadium stood up, and cheered for several minutes.

Down Syndrome affects people of all ages, races and economic levels. In the United States, Down Syndrome affects approximately 350,000 families, and approximately 5,000 children are born with Down Syndrome each year.

For centuries, people have asknowledged this syndrome existed. However, it wasn't recogniezed as a distinct condition until 1866, when the English physician John Langdon Down created a profile of a person with Down Syndrome. A century later, with the advances of modern medicine, the French physician Jerome Lejune indentified Down Syndrome as a chromosomal anomaly that is caused by an error in cell devision called non-disjunction.

There are three main types of chromosome anomalies in Down Syndrome:

1. Trisomy 21 means the presence of extra genetic material on the 21st pair of chromosomes, which results from abnormal cell division during development, of the egg or sperm, or during fertilization. This faulty cell division is responsible for 95% of all cases of Down Syndrome.
2. Translocation is where the extra chromosome 21 broke off and became attached to another chromosome. Translocation accounts for 3% to 4% of all Down Syndrome births.
3. Mosaicism is when only some cells have Trisomy. Mosaicism is rare, and is responsible for only 1% to 2% of all cases of Down Syndrome.

About 80% of children 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. Parents do not cause Down Syndrome -- nothing that a parent does during pregnancy can cause it.

The diagnosis of Down Syndrome is usually suspected after birth, as a result of the baby's appearance. There are numerous physical attributes which may or may not present themselves. Some of the physical characteristics of Down Syndrome are:

• Low muscle tone
• A depressed nasal bridge and a small nose
• Flattening of the back of the head
• Small mouth, small hands and feet
• An upward slant to the eyes
• Enlargement of the tongue in relation to the size of the mouth.

Many of these characteristics are found, to some extent, in individuals who do not have Down Syndrome. Some infants with Down Syndrome have only a few of these traits, while others have many or all. Though individuals with Down Syndrome have distinct physical characteristics, they look more like their families than they do each other.

Children with Down Syndrome are at an increased risk for health problems. Congenital heart defects, increased susceptibility to infection, respiratory problems, obstructed digestive tracts, and childhood leukemia occur more often amoung children with Down Syndrome than in the general population. About a quarter of adults with Down Syndrome get Alzheimer's disease.

On standardized IQ tests, children with Down Syndrome most often score in the mild to moderate range for mental retardation. These tests do not measure many important areas of intelligence, though, and memory, insight, creativity and cleverness will often be average or better. The high rate of learning disabilities in students with Down Syndrome sometimes masks a range of abilities and talents.

In 1910, children with Down Syndrome were expected to survive to the age of nine years old. With the discovery of antibiotics, the average age of survival increased to 19 or 20 years old. With the recent advancements in clinical treatment, as many as 80% of of adults have a life expentancy of 55 years of age -- and many live longer.

Peple with Down Syndrome are individuals with personality, learning styles, intelligence, compliance, humor, compassion, congeniality, and attitude. And, as with the rest of the population, their favorite pasttimes vary individually, and range from reading, gardening, travel, baseball, music and beyond.

Allow your family, friends and neighbors some time to learn about Down Syndrome. Remind them, if necessary, that Down Syndrome is just a small part of a person's genetic make-up. Through educational and the collective efforts of parents, professionals and concerned citizens, people with Down Syndrome will be provided the opportunity to achieve their full potential in all aspects of community life.

Raising any child fills life with unimaginable delights and difficulties, and raising a child with Down Syndrome is no different. But, as the little girl at the Special Olympics shows us, helping others to win makes it all worth the effort.

Down Syndrome Resources for Parents and Professionals

Books for Parents and Professionals

Adolescents with Down Syndrome: Toward a More Fulfilling Life S. M. Pueschel
Experts from diverse backgrounds provide information and perspective on biomedical, psychological, social, sexual, behavioral, educational, recreational, and legal concerns. Readers will also learn how to encourage good nutrition and exercise, promote self-esteem and self-competence, respond to challenging behavior, enhance learning experiences, plan for transitions, and help teens develop leisure pursuits.

Babies with Down Syndrome: A New Parents' Guide (2nd edition) K. Stray-Gundersen
Parents and professionals contribute chapters on the medical, emotional, educational and social issues concerning the development of the child and the family.

Brothers & Sisters - A Special Part of Exceptional Families (2nd edition) T. H. Powell & P. A. Gallagher
A guide for parents, their children, and professionals that encourages a better understanding of the dynamics of family relationships, and the challenges of relating to a sibling with special needs.

Children with Down Syndrome: A Developmental Perspective D. Cicchetti & M. Beeghly
A collection of papers addressing the current state of knowledge of psychological development in infants and children with Down Syndrome. Linguistic, social, emotional, cognitive and representational factors in the developmental process are discussed.

Down Syndrome: Birth to Adulthood J. E. Rynders & J. M. Horrobin
A guide for new parents designed to provide information about Down Syndrome and knowledge of how other parents of children with Down Syndrome have coped with the experience. Medical, social and educational issues are discussed.

Keys to Parenting a Child with Down Syndrome M. Brill
A practical guide to raising a child with Down Syndrome. The book covers a range of key issues in depth and gives practical advice to parents. Areas addressed include initial reactions to diagnosis, managing family dynamics, obtaining educational and medical services and planning for adulthood.

Understanding Down Syndrome: An Introduction for Parents C. Cunningham
This book is geared towards new parents. The author provides a general overview of Down Syndrome, including the physical and medical characteristics associated with the genetic condition, developmental stages and some of the issues families with an individual with Down Syndrome may face.

Personal Accounts of Down Syndrome

Count Us In: Growing Up with Down Syndrome J. Kingsley & M. Levitz
Two young men with Down Syndrome speak in their own words about their experiences growing up with Down Syndrome. Jason (age 19) and Mitchell (age 22) share their feelings and thoughts about friendship, school, hopes for the future and dealing with independence in adulthood.

Life As We Know It: A Father, a Family, and an Exceptional Child M. Bérubé
This book is a father's compelling story of his attempt to make the world a better place for his son who has Down Syndrome. The author tells of his son's development during his first four years of life, and addresses a number of issues, including I.Q. testing, the politics of education, disability law, social services, health care and entitlements. Mr. Bérubé frames these issues within the larger concepts of social justice, what it means to be human and ultimately what kind of society we value and by what means we determine it.