Use National Down Syndrome Awareness Month as an Opportunity to Educate & Inform
October 22, 2019
Do you know what Down syndrome is? Chances are you do, as it’s a common chromosomal condition, occurring in about one in 700 pregnancies—some 6,000 babies a year on average in the U.S. Or you may be aware of the physical attributes of someone with Down syndrome but be unsure or unaware of the full picture of what it involves.
That’s why Down Syndrome Awareness Month happens every October. It’s a chance for those with Down syndrome to tell their stories and speak of the full, active lives they lead. While Down syndrome is associated with delays in physical growth, characteristic facial features, and intellectual disability, those with it work very hard to integrate themselves into their environments, and with help and support do so very successfully.
The awareness month is joined by World Down Syndrome Day, which falls on March 21 and has been recognized by the World Health Organization since 2007. The goal of both is to raise awareness not just of the challenges those with Down Syndrome face, but also how research is improving their lives and how we can all play a part in helping someone with Down syndrome fully participate in the community.
Understanding Leads to Opportunities
The theme of 2019’s World Down Syndrome Day was “leave no one behind,” and that captures perfectly the goal of Down syndrome activists. As those with the condition lead longer lives, they and their advocates are working to boost public awareness of both the condition and how those with it need some extra help in the home and workplace.
For healthcare providers, especially those who care for pregnant women, it’s important to know that older mothers are more likely to deliver a child with Down syndrome. Prenatal testing can identify the condition, and thus allow parents time to prepare for the extra steps they’ll need to take in order to give their child a happy, healthy life.
There is no specific, standard treatment for Down syndrome. Each child is different, and so a care plan accommodate specific physical and intellectual needs, as well as unique characteristics displayed while growing up. Usually a care team for someone with Down syndrome may include any or all of the following:
- Primary care physician
- Special education professionals
- Speech therapists
- Occupational therapists
- Social workers
Care involves a broad range of professionals, and it’s important that healthcare professionals are aware of the unique challenges Down syndrome creates. For instance, many children born with Down syndrome also may have heart defects that require surgery almost immediately after birth, and some have digestive problems that require a special diet for their entire life. Otherwise, a Down syndrome child will need the same physical care as any other child, including regular vaccinations, annual physicals, and the like.
Therapy of all kinds is key to helping a child with Down syndrome grow into a happy, healthy adult. That can mean physical therapy, as well as social and adaptive treatment to help them integrate into the larger society around them. Special education is essential, because most children with Down syndrome will need customized and focused teaching in order to learn and retain skills. Many of the most successful programs combine speech, physical, and occupational therapy as the child grows, so that along with basic education they gain skills that help them seek jobs and careers following their primary education’s end with high school.
Many people with Down syndrome are drawn to healthcare as a profession, and so it’s incumbent upon their colleagues to learn how to treat them as coworkers. Here are some basic pointers:
- Someone with Down syndrome is an individual, not a diagnosis, so use person-first language.
- Speak slowly, so that the person has time to process and understand your request and offer their feedback.
- Be clear and concise, giving single-point directions or a list of priorities.
- Be positive and supportive
Those living with Down syndrome are more integrated into society than ever, which is a wonderful progression from a time not that long ago when they were hidden away. They can, and do, bring great positivity and enthusiasm to everything they approach, in the workplace as well as the community at large.