Down Syndrome Resources Online

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Down syndrome (also known as Down’s syndrome in the United Kingdom and often referred to as “DS” among families of those with Down syndrome) is the most prevalent genetic cause of learning or intellectual disabilities. One in every 800 babies is diagnosed with Down syndrome. Down syndrome is an abnormality of chromosome 21 that results in extra genetic material, and can be caused by three distinct genetic variations. Over 90 percent of Down syndrome cases are caused by Trisomy 21, in which children have three copies of chromosome 21 in all of their cells (instead of the normal two). Children with Mosaic Down syndrome, a rare form of Down syndrome, have three copies of chromosome 21 in some of their cells but the usual two copies in other cells. In children with Translocation Down syndrome, part of chromosome 21 attaches to another chromosome.

Children with Down syndrome can have other health conditions. Half of children with Down syndrome have congenital heart defects, some of which require surgery. People with Down syndrome have a higher chance of developing leukemia in childhood and are more susceptible to pneumonia and other infectious diseases. Later in life, people with Down syndrome are at increased risk of sleep apnea, dementia, and obesity.

Children with Down syndrome can benefit from early intervention programs to help them increase their quality of life and realize their full potential. Early intervention programs are specialized programs for children with Down syndrome that helps to stimulate them in infancy and as young children with motor, sensory, and cognitive activities. Special therapists help children develop their motor skills, self-help skills, social skills, and language skills.

Parents and families of children with Down syndrome can benefit from the help and support of other families impacted by the condition Online support groups allow parents to talk directly with others to share advice, stories, and help. The websites of national and international organizations offer parents information about Down syndrome as well as information on how to educate children with Down syndrome both at home and at school. Many of these organizations also offer advice on transitioning young adults with Down syndrome to living independently. Some national and international organizations offer in-person support and social groups and activities and may match parents to other families in their area.

Organizations

Education

  • Birth Defect Research for Children: This organization provides information for parents of children with Down syndrome and other conditions. The organization will match parents with other families whose children have the same or similar conditions and links to support groups.
  • National Dissemination Center for Children with Disabilities: This organization advocates for children with disabilities. The website includes information on Down syndrome, disability awareness, inclusion, and resources for parents.
  • Down Syndrome Information: The Centers for Disease Control’s informational pages on Down Syndrome.
  • Learning about Down Syndrome: Information about Down syndrome and its diagnosis and treatment.
  • Living with Down Syndrome: Basic information on Down syndrome and related medical condition; site also includes information on early intervention and education.
  • Caring for a Baby with Down Syndrome: Information for new parents of a child with Down syndrome.
  • Resources for Parents: Answers to parents’ questions about parenting a child with Down syndrome; includes information on parenting newborns to young adults transitioning to living on their own.

Inclusion

  • Making Inclusion Work: An article on best practices for the inclusive education of children with Down syndrome.
  • Council of Exceptional Children: This organization advocates for children with special needs.
  • Goodwill Industries: Goodwill Industries works with people with disabilities to help them find and keep jobs and increase their independence.
  • People First: An organization of people with learning difficulties that advocate for the rights of people with learning disabilities. This website lists affiliates of the group in the UK, Canada, Australia, and the United States.
  • TASH: An organization that advocates for the inclusion of people with disabilities.
  • Education: Educational resources and inclusion for people with disabilities.
  • Inclusion Solutions: Resources for parents and educators on inclusion.
  • School inclusion: Inclusion information for children from preschool to high school.

Healthcare

Personal Stories

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