Down syndrome (DS) is a genetic disorder that causes developmental delays ranging from moderate to severe. The disorder is rarely inherited, but instead caused by abnormal "cell division during the development of the egg, sperm or embryo," according to the Mayo Clinic. Children with the disorder also suffer some degree of lifelong mental retardation, making it one of the most common causes of learning disabilities in children. Though infants born with Down syndrome are considered average size, they tend to grow more slowly and achieve developmental milestones at about twice the age of children without the disorder. Early recognition and personal education of Down syndrome is critical in caring for children born with special needs.
Whether you are the parent of a child with DS or a special needs caregiver, connecting with DS-focused organizations and others with first-hand experience caring for a child with Down syndrome is an important step in understanding the potential challenges and triumphs ahead. Here are some notable organizations and support groups that are a good place to start.
National Down Syndrome Congress (NDSC)
This is the oldest organization and support group in the United States for those affected by Down syndrome. NDSC focuses not only on those with the disorder and their relatives, but also the professionals who work with them. They advocate for those with Down syndrome through education, legislation, medical care and disability awareness. Expectant or new parents can access tons of useful information and advice to help them navigate their journey while also offering general education, healthcare, and speech-related resources for Down syndrome.
National Down Syndrome Society (NDSS)
The National Down Syndrome Society is known as the "national advocate for the value, acceptance and inclusion" of those living with Down syndrome. In addition to the informative articles on the website, you can read personal stories, help raise funds for Down syndrome research and awareness, find support groups in your area and sign up to receive their e-newsletter and stay in the loop with all the latest Down syndrome news and information.
This is a website fully-focused on children living with Down syndrome, their caregivers and the support and joy that can be gained by connecting with others affected by this syndrome. Visitors to the site are encouraged to create a user profile, post pictures and ask questions to other site members to help gain insight into their own personal experiences. Connecting people and forming friendships is their main goal.
Association for Children with Down Syndrome (ACDS)
This organization provides lifelong resources for individuals with Down syndrome and their families. ACDS is an educational facility located in New York with three distinct programs: preschool (from birth to age 5), 5 Plus (for ages 5 and up), and Individualized Residential Alternatives (IRAs) for adults.
International Mosaic Down Syndrome Society (IMDSS)
For those with children who have been diagnosed with mosaic Down syndrome (mDs), the International Mosaic Down Syndrome Society is an organization completely dedicated to this rare form of the disorder. Parents can join the website and connect with others in their state with children or family members with mDs, while medical professionals can connect with others who care for mDs patients and obtain information and the latest research on all things MDS.
National Association for Down Syndrome (NADS)
NADS offers specific support for new parents and grandparents, as well as parents of teenagers and adults with Down syndrome. NADS provides mentoring programs, parent support groups, parent workshops, family retreats, and work experience programs for those living in the Chicago area, but their website contains educational information and helpful links to everything Down syndrome-related.
Down Syndrome Research and Treatment Foundation (DSRTF)
DSRTF is dedicated to finding a treatment to improve learning, speech, and memory for those living with Down syndrome. Since it began in 2004, DSRTF is the leading private source of funding in the United States for Down syndrome cognition research, according to their website. Research Down syndrome on the site, get involved by making a monetary donation or sign up to participate in one of their community events to raise awareness of Down syndrome.
Down Syndrome Research Foundation (DSRF)
DSRF helps those with Down syndrome reach their full potential in life by empowering them through educational programs and services. The organization is focused on understanding the learning styles of those with Down syndrome and supporting parents of DS children. Children can enroll in a variety of classes specifically designed for them, including reading, music, communication and language programs.
The Arc is an organization created for those with Down syndrome, and anyone else with intellectual and developmental disabilities. With over 700 chapters nationwide, anyone touched by Down syndrome can search their online directory to find local support and guidance.
Uno Mas! is strictly an online forum dedicated to supporting the caregivers of children with Down syndrome. The message board is broken down into health and medical issues, general DS information, education-related topics, as well as a book club and get-together sections.
Researching Down syndrome is an essential first step towards educating yourself about the disorder and its potential challenges. Find support from others in your situation by contacting any reputable Down syndrome organization to gain insight and knowledge, as well as share personal experiences. Though finding out your child has Down syndrome may be surprising, with adequate love and support you and your child can live a happy and fulfilling life together.
Mary Evett is a freelance writer covering all things Houston. Her work can be found here.