National Down Syndrome Awareness Month

October is Down Syndrome Awareness Month, a chance to spread awareness. During the month of October, we celebrate people with Down syndrome and make people aware of their abilities and accomplishments. It’s not about celebrating disabilities, it’s about celebrating abilities. Better understanding of Down syndrome and early interventions can greatly increase the quality of life for children and adults with this disorder and help them live fulfilling lives.

Down syndrome is a genetic disorder caused when abnormal cell division results in an extra full or partial copy of chromosome 21. This extra genetic material causes the developmental changes and physical features of Down syndrome. Down syndrome varies in severity among individuals, causing lifelong intellectual disability and developmental delays. It’s the most common genetic chromosomal disorder and cause of learning disabilities in children. It also commonly causes other medical abnormalities, including heart and gastrointestinal disorders.

Although no one knows for sure why DS happens and there’s no way to prevent the chromosomal error that causes it, scientists do know that women age 35 and older have a significantly higher risk of having a child with the condition. At age 30, for example, a woman has about a 1 in 1,000 chance of conceiving a child with DS. Those odds increase to about 1 in 400 by age 35. By 40 the risk rises to about 1 in 100. At birth, kids with DS are usually of average size but it also affects kids’ ability to learn in different ways, but most have mild to moderate intellectual impairment. Kids with DS can and do learn, and are capable of developing skills throughout their lives. Kids with DS have a wide range of abilities, and there’s no way to tell at birth what they will be capable of as they grow up.

While some kids with DS have no significant health problems, others may experience a host of medical issues that require extra care. For example, almost half of all children born with DS will have a congenital heart defect. Kids with Down syndrome are also at an increased risk of developing pulmonary hypertension, a serious condition that can lead to irreversible damage to the lungs. All infants with Down syndrome should be evaluated by a pediatric cardiologist. Approximately half of all kids with DS also have problems with hearing and vision. Regular evaluations by an otolaryngologist (ear, nose, and throat doctor), audiologist, and an ophthalmologist are necessary to detect and correct any problems before they affect language and learning skills. Other medical conditions that may happen more frequently in kids with DS include thyroid problems, stomach and intestinal problems, seizure disorders, breathing problems, including sleep apnea and asthma, obesity, an increased chance of infections, and a higher risk of childhood leukemia. People with Down syndrome sometimes have an unstable upper spine and should be evaluated by a doctor before participating in physical activities.

If you’re the parent of a child diagnosed with Down syndrome, you may at first feel overwhelmed by feelings of loss, guilt, and fear. Talking with other parents of kids with DS may help you deal with the initial shock and grief and find ways to look toward the future. Many parents find that learning as much as they can about DS helps ease some of their fears. Today, many kids with Down syndrome go to school and enjoy many of the same activities as other kids their age. A few go on to college. Many transition to semi-independent living. Still others continue to live at home but are able to hold jobs, thus finding their own success in the community.