March 21 is World Down Syndrome Day – a day intended to raise awareness and spread education about the condition, as well as a day for those affected by the condition to celebrate themselves.
World Down Syndrome Day was observed for the first time 2006. The day of observation was officially declared by the United Nations in December 2011, and has been globally recognized since 2012.
March 21 – the 21st day of the third month – was chosen as the day of observation for Down syndrome because it represents the triplication, or trisomy, of the 21st chromosome, which causes Down syndrome.
Down syndrome can affect an individual’s speech abilities, communication skills, cognitive abilities and motor skills. The condition can be associated with greater risks of other health issues, such as immune disorders, heart defects and sleep apnea.
Randy McCombie, PhD, is a faculty member with the Division of Occupational Therapy in the West Virginia University School of Medicine.
McCombie was inspired to learn more about Down syndrome after speaking with a student whose cousin is affected by the condition. It was through that search for information that McCombie learned about World Down Syndrome Day.
McCombie subsequently began reaching out to publications that he thought might be able to help bring awareness to the day of observation.
McCombie commented on the long-term importance of occupational therapy in the treatment of disabilities and injuries.
“Occupational therapists help people across their lifespan participate in the things they want and need to do through the therapeutic use of everyday activities, which we call occupations. That’s everything from helping children with disabilities to participate in school [and] social situations, helping people recover from injuries to regain skills. We cover the full range of lifespan and work in clients’ homes, work in hospital settings, geriatric facilities, school systems, [and] specialized care facilities,” he said.
A West Virginia woman working in this field is living proof of the lifelong role of occupational therapy in the development of people affected by Down syndrome.
Alyssa Culicerto is an occupational therapist with Sunshine Therapy Services. She works directly with people who have Down syndrome, with an estimated 1/3 of her case load consisting of people with the condition.
While Culicerto started out as a pediatric occupational therapist, she has been with many of her clients for a decade now.
“What happened was, as my kids aged, I learned that their needs didn’t go away. They just changed. So, I have followed the same children with Down syndrome into adulthood now,” Culicerto said.
Culicerto works with these individuals in their homes to help with their developmental processes, self-care and life skills. She said her main goal in working with her clients is to help them increase their independence.
She said that since Down syndrome affects all of a person’s daily activities, she works with her clients to improve individual areas of concern and tries to find modifications for those areas that her clients particularly struggle with.
Culicerto said she believes the most important aspect of World Down Syndrome Day is spreading awareness among communities. She said it is important for the public to understand that people with Down syndrome are capable of doing things that anyone else is capable of doing – they just might need a little extra time or help to do so.
“I think that people assume that at some point, [people with Down syndrome] stop learning new skills or stop developing. What the research actually shows now is that they’re capable of learning through their whole life,” Culicerto said.
She said her clients and their families do celebrate World Down Syndrome Day, often by wearing mismatched socks. This is a World Down Syndrome Day tradition intended to draw attention to, and initiate conversation about, the date and the condition.
Culicerto said a local support group used to hold an event for World Down Syndrome Day. While she hasn’t heard any news regarding that event this year, she assumed the families she works with will still don their mismatched socks and carry out other World Down Syndrome Day traditions.
Down Syndrome Network of West Virginia Director Ashley Orndorff said she got involved with the organization in 2014, after her daughter was born and diagnosed with Down syndrome.
Orndorff said the mission of DSNWV is to enhance the lives of all people with Down syndrome and their families across the state.
She said many of the families associated with DSNWV utilize World Down Syndrome Day as a day to celebrate.
“[We] celebrate our loved ones with Down syndrome and – outside of COVID restrictions – get together and celebrate and have a party, and just celebrate our differences and our uniqueness,” Orndorff said.
Orndorff said this celebration of uniqueness is the reason behind worldwide campaigns to wear mismatched socks on World Down Syndrome Day – even though the socks may be different, they serve the same purpose as any other pair of socks.
“We like to talk about how people with Down syndrome do have differences, but they’re still people. They have the same wants and needs and likes and dislikes as any other person,” Orndorff said.
She said she believes a large misconception regarding Down syndrome stems from an old assumption that the condition limits the abilities of the people it affects.
Orndorff said people tend to place people with Down syndrome in a box, generalizing that they are always happy, they will always need to be taken care of or that they will go through school without understanding it or finding fulfillment in their education.
She said the increase in education and advocacy surrounding the condition helps the public understand the true capabilities of people with Down syndrome, some of which include attending college, working, living independently, utilizing public transportation and making their own medical decisions.
“I think one of our biggest goals as an organization is to advocate for people with Down syndrome and teach everyone that these people are just like you and I. They need a little bit more support, especially in the beginning, but you give people with Down syndrome resources to be independent, and they will be independent,” Orndorff said.
Orndorff said one of the programs run by WVDSN involves reaching out to medical professionals to further educate them on the condition, as the first experience a parent might have is a medical professional telling them their child has Down syndrome.
She said that while there is a natural grieving process that parents endure when they learn that their child has a difference, the process will end, and parents and their children will have a normal family life despite that difference.
She said the organization wants to empower parents of children with Down syndrome because they play a huge role in advocating for their child, and they need to feel comfortable making decisions and raising their voices when they have a concern.
“We want to start there in the beginning and set a positive outlook for that,” Orndorff said.
For more information on the West Virginia Down Syndrome Network, visit https://dsnwv.org/.
To read more about World Down Syndrome Day, visit https://www.un.org/en/observances/down-syndrome-day.
