Today is World Down Syndrome Day! WDSD is a day to celebrate and raise awareness for individuals with Down Syndrome. The “Lots of Socks” campaign asks that you wear mismatched socks, brightly colored socks or clothing, anything that will get people to ask you about it so that you can share information about Down Syndrome. Raising awareness is key to helping promote inclusion and lifting the stigma of “disability” in our society. Awareness also leads to funding and research opportunities to help the Down Syndrome community and the medical issues that they face each and every day.
What is Down Syndrome?
Down Syndrome, also known as Trisomy-21, is a genetic condition, which occurs in about 1 in 830 newborns, that results from an individual having three copies of the 21st chromosome in each cell instead of the usual two copies. The genetic abnormality happens at conception and is not the result of anything either parent did during the pregnancy. Down Syndrome is likely one of the conditions the general public most commonly associates with individuals who have special needs.
Individuals with Down Syndrome often share common facial features, hypotonia (low muscle tone) in infancy, and intellectual disability. There are a number of other health concerns that often occur which include: congenital heart defects (often requiring surgical repair), gastroesophageal reflux, hearing and vision problems, and global developmental delays.
How is Down Syndrome Diagnosed?
A diagnosis of Down Syndrome is typically made at birth or shortly thereafter. With the advancements in research and how common DS now is, the diagnosis is usually made clinically based on physical characteristics. The diagnosis can then be confirmed through a blood test, which looks at the specific genetic abnormality. Sometimes, a prenatal diagnosis can be made during the routine screening performed by an OB/GYN through blood tests, ultrasound, amniocentesis, or other diagnostic tests available.
There is no way to predict the future and every individual with Down Syndrome is different. Although there is a vast array of experiences, an overwhelming majority of individuals with Down Syndrome can go on to live full and happy lives with support of their families. Specialized medical care is essential in the early years to promote development and monitor medical complications. Many families will report the most difficulties with their child occurred in the infancy years and eventually stabilized before the child entered school. The struggles will be present throughout an individual’s life, but they won’t always be as trying as they were in the very beginning. Despite the struggles, the journey can be beautiful and rewarding. This is a powerful video response from the Italian Association for Down Syndrome to a mother who asked what kind of life her child would have.
Early therapeutic intervention is essential for children with any genetic condition that hinders growth and development. Therapy plans may include Physical Therapy, Occupational Therapy, Speech Therapy, and alternative therapies like Music Therapy and Hippotherapy.
Physical Therapy can be started very early on to help with the weak muscle tone many individuals experience. PT will help build those muscles and nurture the child’s ability to achieve developmental milestones.
Occupational Therapy is often introduced to help with fine motor and self-help skills like feeding, dressing, and natural play.
Speech Therapy can help with language development as individuals with Down Syndrome are often slower to develop speech and can be difficult to understand. Speech therapy can help this process.
Alternative therapies include Music Therapy, which is known to help facilitate language through music, and Hippotherapy , which is the use of therapeutic horseback riding to encourage motor development and language.
The amount of time therapy is required varies for many, but therapists usually work with children well into adolescence to ensure they have achieved all developmental milestones.
What resources are available to my family?
Austin has a fantastic resource, as the Down Syndrome Association of Central Texas is located in our city. DSACT provides New Parent Support,year-round programs for children with Down Syndrome and their families, and a variety of other programs. Visit dsact.com to join and see upcoming events.
DSACT is also participating in Amplify Austin, a 24-hour donation spree that aims to raise $4 million for local non-profits! To support World Down Syndrome Day, consider giving a donation to DSACT so that they can help more families in our area.
Support is also available through the national organization, National Down Syndrome Society http://www.ndss.org/
We hope you will join us in celebrating World Down Syndrome Day and continue to help raise awareness!