Friday, March 21, 2014

Spreading Awareness About Down Syndrome

Rachael's Note: March 21st is World Down Syndrome Day (named for Trisomy 21, the condition which causes Down Syndrome). The diagnosis of Down syndrome often strikes fear and dread in an expectant mother's and father's heart. The Down syndrome diagnosis often brings forth images of mentally handicapped individuals unable to take care for themselves and partake in life in any real way, and the need to care for their child for the rest of their life. Also, many people still view Down Syndrome as "terminal illness" like cancer or heart disease, and the individuals with this condition "defective" or "broken." These and other misconceptions about Down syndrome are often based on worse-case scenarios, misperceptions, sterotypes, and ignorance, and further perpetuate these fears. I have been working in direct care for 7 years and have met and worked with individuals with a variety of developmental disabilities. Today, I will be sharing information, based on my own knowledge/experience as well as from professional/parent resources, to debunk many of the misperceptions and stereotypes about Down Syndrome. Down Syndrome it is a developmental disability. Down syndrome is a genetic condition that causes delays in physical and intellectual development. While there is no cure for Down syndrome, there are many treatments available for the problems associated with Down syndrome. Approximately 40% of the children have congenital heart defects. Some of the heart conditions require surgery immediately after birth/in early childhood, while others only require careful monitoring. Children with Down syndrome have a higher incidence of infection, respiratory, vision and hearing problems as well as thyroid and other medical conditions. However, with appropriate medical care most children and adults with Down syndrome can lead healthy lives. The average life expectancy of individuals with Down syndrome is 55 years, with many living into their sixties and seventies. Unfortunately, for individuals with Down Syndrome, there is a higher chance of developing dementia and Alzheimer's, however this doesn't mean every individual will develop it.

Also, most people with Down syndrome have only mild to moderate mental retardation. More important than IQ scores is the fact that all individuals with Down syndrome are capable of learning. Most children with Down syndrome in the United States are “mainstreamed” into regular schools. They attend regular classes for some subjects and attend special classes for other subjects and continue to earn a certificate of completion or graduate from high school. A large percentage of adults with Down syndrome live semi-independently in supported living homes and assisted living facilities. Adults with Down syndrome often hold jobs and have romantic relationships. Some high school graduates with Down syndrome participate in post-secondary education. Many adults with Down syndrome are capable of working in the community, but some require a more structured environment, such as a supervised workshop.

It's important to remember that individuals with Down Syndrome are people too. They enjoy various hobbies and activities and have individual likes and dislikes like you and I. Also, people with Down syndrome experience a full range of emotions such as sadness, anger and happiness & they respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior, just like everyone else.

Disability rights organizations, care providers, and individuals and their families are seeking to educate the public and bring about awareness about Down Syndrome so that better treatments can be found, to lend to more education and understanding of the condition, and bring about awareness.

For more information on Down Syndrome and to listen to families and individuals with Down Syndrome share their insight and experiences, please visit:

Room for More: World Down Syndrome Day

Offers scientific research, information, education, and suuport to parents and families of children with Down Syndrome as well as awareness and education for the medical professionals and the general public. Written by parents of a child with Down Syndrome.

National Down Syndrome Society Offers advocacy, outreach, education, and support and resources for families, parents, and medical professionals. Helpline: 1-800-221-4602

Support Organization for Families of Trisomy, a nonprofit volunteer organization offering support for parents who have had or are expecting a child with a chromosome disorder and education to families and professionals interested in the care of these children.

Recommended Down Syndrome Sites on the Internet
Compiled by Len Leshin, M.D.

Hidden Treasures: The Trisomy 21 Journey
Parents from all around the world share their stories.

Video: Dreams
Dreams features children and adults who have Down syndrome talking about their dreams and what they're proud of in their lives. This fun and inspirational video made by Scott and Julia Elliott celebrates the work of the National Down Syndrome Society and the larger Down syndrome community.

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