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Understanding a Down Syndrome Diagnosis

Down Syndrome Pregnancy, Human Development Institute at the University of Kentucky

A Promising Future Together, NDSS (can request in French, Spanish, and Tagalog)

Infant and Toddler Connection of Virginia

The Arc of Northern Virginia- Early Intervention

National Down Syndrome Congress (NDSC)

NDSC is located in Atlanta but is a national organization with board members from all across the country. They have a great website, a fantastic national public awareness campaign (“We’re More Alike Than Different”), publish a newsletter and other informational materials, and hold a national convention for families and self-advocates every summer.

National Down Syndrome Society (NDSS)

NDSS is located in New York, NY and has a National Policy Center in Washington, DC. NDSS has a variety of education, research, and advocacy programs and oversees Buddy Walks across the country.

National Association for Down Syndrome (NADS)

NADS is located in Wilmette, Illinois and serves the greater Chicago area.

Global Down Syndrome Foundation

The Global Down Syndrome Foundation is a public non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through Research, Medical care, Education and Advocacy.

International Mosaic Down Syndrome Association

IMDSA is designed to provide support, information and research to any family, individual or professional whose life has been affected by mosaic Down syndrome.

Association for Children with Down Syndrome

ACDS's primary headquarters is located in Plainview, New York with a second facility in Levittown, New York and serves families in those areas.

Down Syndrome Diagnosis Network (DSDN)

The Lucky Few Foundation

Nothing you did or thought caused your child to have Down syndrome. All individuals who have Down syndrome were born with extra chromosome material in their cells. This is a result of an error in cell division, in either the egg or sperm, prior to conception or very soon afterward. At this time it is not known why the extra genetic material causes Down syndrome.

Your pediatrician for routine care does not need to be a "Down syndrome specialist.” It is more important for you to choose a doctor you are comfortable with and who is willing to learn with you. Visit the American Academy of Pediatrician’s website for children with Down syndrome.

The fact that you are asking this question already, means you are a step ahead of the game. Consider reading “Starting Life with Your Child with a Disability,” from the Arc of Northern Virginia to help you get started. This resource is available in multiple languages. You might also talk to other parents who live near you. They are often the best source of information for people and programs that can help maximize your child’s potential.

We recommend a terrific book, We’ll Paint the Octopus Red, by Stephanie Stuve-Bodeen for preschool and early elementary aged children. The story is easy to understand and there is a question and answer section in the back that addresses many concerns that a young child may have. There are often sibling workshops offered for older brothers and sisters. The NDSC national convention each year includes a sibling track.

There are programs available for people with Down syndrome in all stages of development. These include early intervention from birth (Babies Can’t Wait), preschool programs, free appropriate public education in the least restrictive environment, therapy, post-secondary school options, employment training, and a wide array of social and support programs.

Most incorporate speech, physical, occupational, and music therapy along with educational approaches. The goal is to lead the individual with Down syndrome toward greater independence and to give them the opportunity to develop their individual potential. With the right supports, most individuals with Down syndrome have a great chance of becoming integral members of their community.

Parents, siblings, and other family members are encouraged to participate in support groups and organizations that will help them to understand the needs and potential of their family member with Down syndrome.

A child with Down syndrome can be born to anyone, regardless of age, race, socio-economic status, or where they live. Down syndrome occurs in approximately one out of every 691 births in the United States.

People with Down syndrome are more like average persons than they are different. First and foremost, they are individuals with their own personalities. They have unique talents, characteristics, abilities and disabilities, just like the rest of us. They are brothers, sisters, husbands, wives, friends, and neighbors. They work in banks, schools, offices, and restaurants. They would like you to know “We’re More Alike Than Different.”

In 1929, the average life expectancy was 9 years, but with awareness, better health care, and community resources, many individuals with Down syndrome now live into their 60′s. As medical care continues to advance, the life span of many individuals will be even longer.

No, there is no cure. The extra chromosome will remain in cells throughout the person’s life. However, early intervention, high quality health care, good educational opportunities, appropriate nutrition, and many other interventions make a huge difference in the individual’s life.

Not necessarily, but advanced age is a risk factor. The type of Down syndrome your child has is also a factor. A Robertsonian Translocation could indicate a familial origin. Genetic counseling is available to answer questions like this for particular individuals.

Unless there is another condition that is present, almost all individuals with Down syndrome do learn to walk and to talk.