Down Syndrome
Created by: Morgan Fleming and Mary-Kate Goebel
Definition:
According to the National Down Syndrome Society, Down syndrome is defined as a chromosomal disorder with identifiable physical characteristics resulting in delays in physical and intellectual development. Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all. People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives. People with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses. Children with Down syndrome learn to sit, walk, talk, play, and do most other activities; only somewhat later than their peers without Down syndrome.
Prevalence:
Down syndrome is the most commonly occurring chromosomal condition. One in every 733 babies is born with Down syndrome. There are more than 400,000 people living with Down syndrome in the United States. Down syndrome occurs in people of all races and economic levels.
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Resource Categories
Description and information
Links and Explanations
Information about Down Syndrome
Websites
1. The National Association for Down Syndrome is the first organization founded to serve people with Down Syndrome. Although some of their services are only available in the Chicago area, they have many other services and information available to the larger
community of the United States.
2. The National Down Syndrome Society is a national organization working towards the acceptance of people with Down Syndrome in society. The website provides information regarding education, healthcare, research, and community events as well as general information about Down Syndrome.
3. The National Dissemination Center for Children with Disabilities website provides information about specific disabilities. Parents, educators and the community can find facts as well as resources and tips in regards to each disability.
Articles and Books:
1. “If People With Down Syndrome Ruled the World” was originally given as a speech but recreated in an article because of its popularity. The article gives us insight into the world of people with Down Syndrome and what they consider the important things in life.
2. Expecting Adam: A True Story of Birth, Rebirth, and Everyday Magic is a book in which Martha Beck shares her story of finding out her unborn son was diagnosed with Down Syndrome and the nine months of her pregnancy in which she prepared for the birth of Adam.
3. Road Map to Holland is a book about both the hardships and good times Jennifer Graf Groneberg experienced while raising her son with Down Syndrome through his first two years of life.
4. In Gifts, 63 women share their diverse stories of their experiences with having a child diagnosed with Down Syndrome. The stories vary in the time of diagnosis, struggles, experiences, etc. but all convey a positive message.
5. Babies with Down Syndrome: A New Parents’ Guide shares the best practices and resources for raising a child with Down Syndrome from birth until their fifth birthday. Originally written in 1985, the book has been revised three times, with the most recent edition in 2008.
6. The Year My Son and I Were Born: A Story of Down Syndrome, Motherhood, and Self-Discovery a unique insight on raising a child with Down Syndrome. Kathryn Lynard Soper tells her story of of struggle but also positive experiences with raising her seventh child after he is diagnosed with Down Syndrome at birth.
Websites:
1. http://www.nads.org/pages_new/about.html (National Association for Down Syndrome)
2. http://www.ndss.org/ (National Down Syndrome Society)
3. http://www.nichcy.org/Disabilities/Specific/Pages/default.aspx
(National Dissemination Center for Children with Disabilities)
Articles and Books:
1. “If People With Down Syndrome Ruled the World”
http://www.nads.org/pages_new/news/ruletheworld.html
2. Expecting Adam: A True Story of Birth, Rebirth and Everyday Magic by Martha N. Beck
3. Road Map to Holland by Jennifer Graf Groneberg
4. Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives by Kathryn Lynard Soper
5. Babies with Down Syndrome: A New Parents’ Guide by Susan J. Skallerup
6. The Year My Son and I Were Born: A Story of Down Syndrome, Motherhood, and Self-Discovery by Kathryn Lynard Soper
Education and Services
1. The Maryland Special Education Rights Handbook explains the rights of parents with children with disabilities in the special education system and IEP process.
2. The ABCs for Life Success is an organization of academic behavioral consultants that are trained to help parents navigate through the education system and create the most successful programs for their student regardless of their disability.
3. The Maryland Coalition for Inclusive Education is an organization that provides services to families of students with disabilities in the hopes of the student’s inclusion into their neighborhood school.
4. The Kennedy Krieger Down Syndrome Clinic was designed to help people with Down Syndrome become independent. The clinic focuses on helping them become independent in their families, school, and community.
5. This webinar is designed to provide information for parents and educators in helping students with disabilities to be successful in their elementary school years in their mainstream school. The website also provides other useful webinars relating to the education of people with Down Syndrome.
6. The Down Syndrome in Practice Video Films are a series of videos to help parents and educators work with children with Down Syndrome in their education. They are all based on the latest research dealing how children with Down Syndrome need to be supported.
1. http://www.mdlclaw.org/wp-content/uploads/2010/02/pub-special-ed-handbook-Sept-2009.pdf (Maryland Special Education Rights Handbook)
2. http://abc4lifesuccess.com/index.html (ABCs for Life Success)
3. http://www.mcie.org/index.asp (Maryland Coalition for Inclusive Education)
4. http://www.kennedykrieger.org/kki_cp.jsp?pid=1399 (Kennedy Krieger’s Down Syndrome Clinic)
5. http://www.downsed.org/en/gb/sarah-duffen-centre-training/childhood-5-11/ (Webinar: Key Topics Training: Educating children with Down syndrome in primary schools from 5 to 11 years)
6. http://www.downsed.org/en/gb/in-practice/ (Down Syndrome in Practice Video Films)
Local Support Groups
1. The Chesapeake Parent Support Group is a group designed to give support to families affected by Down Syndrome in the Baltimore area. Along with general meetings, the group holds many events for people living with Down Syndrome which can be seen in their newsletter.
2. The Friends of Frederick Maryland is a support group for parents of children with Down Syndrome in Frederick, Maryland. They advocate for awareness of Down Syndrome and provide resources and support to a range of parents including new and expecting parents. They meet monthly at the Middleton United Methodist Church.
3. Angels Forever Up is a group of parents in Southern Maryland. They provide a variety of local and national resources as well as support to parents with children with Down Syndrome. They also have three infant and toddler programs located in Charles County, Calvert County, and St. Mary’s County.
4. The Down Syndrome Connection provides support and resources to parents but they also hold trainings and presentations for educators, professionals, and others who may be working with a child with Down Syndrome. They also plan their own event, Buddy Jam.
5. The Down Syndrome Network of Montgomery County is an organization that provides resources and social events for families affected by Down Syndrome. They hold monthly meetings at a location in Rockville, Maryland.
1. http://www.cdspg.org/ (Chesapeake Down Syndrome Parent Support Group)
2. http://www.friendsoffredco.org/ (Friends of Frederick Maryland)
3. http://www.angelsforeverup.org/ (Angels Forever Up)
4. http://www.downsyndromeconnection.com/ (Down Syndrome Connection)
5. http://www.dsnmc.org/ (Down Syndrome Network of Montgomery County)
Recreational and Community-based Resources
1. The Buddy Walk is an event held throughout the state in several locations through the different Down Syndrome organizations but all have the common goal of raising awareness for Down Syndrome. The walks are usually scheduled for September/October. This is the page for the Buddy Walk held by the Down Syndrome Network of Montgomery County.
2. The Special Olympics of Baltimore is an organization dedicated to keeping those people with disabilities physically active. They hold several athletic programs and sporting events throughout the year.
3. The Buddy Jam is an event held by the Down Syndrome Network of Montgomery County every September to raise awareness for Down Syndrome. The event is like a carnival or fair with moon bounces, games, face painting, and food.
4. Maryland Therapeutic Riding is an organization located between Baltimore and Annapolis that provides a variety of programs for people with disabilities to ride horses.
5. This is a play group for children with Down Syndrome between the ages of 0 and 5 that is held weekly in Annapolis, MD at My Gym. It costs 5 dollars to use the gym.
1. http://www.gifttool.com/athon/AthonDetails?ID=1295&AID=1254
(Buddy Walk in Potomac, MD)
2. http://somdba.org/ (Special Olympics of Baltimore)
3. http://www.downsyndromeconnection.com/buddyjam.htm (Buddy Jam)
4. http://www.horsesthatheal.org/ (Maryland Therapeutic Riding)
5. http://www.downsyndromeconnection.com/events.htm (Down Syndrome Connection 0-5 Play Group at My Gym)
Funding. Legal/advocacy Information
1. The Social Security Administration provides benefits to people with disabilities. This website provides the necessary information to apply for those benefits.
2. This website provides a list of both books and website for funding for a person with a disability. They can find information regarding funding for assistive technology to financial aid for college.
3. This page from the National Human Genome Research Institute provides information regarding funding for medications and medical treatment as well as clinical trials being conducted.
4. The Developmental Disabilities Administration works to ensure that people with disabilities get the services they need to be a part of their community. They ensure this by providing the necessary funding these people need for their services and supports.
5. Friends of Man is a charity that gives all of their donations to people in need, including people and families affected by disabilities. The money can be used for a variety of things including food, medications, daycare, hearing aids, etc.
1. http://www.socialsecurity.gov/pgm/links_disability.htm
(Social Security Benefits)
2. http://foundationcenter.org/getstarted/topical/disabilities.html/
(Foundation Center)
3. http://www.genome.gov/11008842 (National Human Genome Research Institute)
4. http://ddamaryland.org/ (Developmental Disabilities Administration)
5. http://www.friendsofman.org/index.php (Friends of Man)