This Sunday, March 21, will be observed as World Down Syndrome Day 2021, a time of awareness, attention to and appreciation of abilities.
The date of the 21st day of the 3rd month was selected to signify the distinctive triplication of the 21st chromosome which causes Down syndrome.
It’s a day with added professional and personal meaning for Down Syndrome Network of West Virginia Executive Director Ashley Orndorff; the South Charleston resident is also the parent of a Down syndrome child, daughter Hannah, 7.
Orndorff graduated from the West Virginia University occupational therapy program in 2009 and practiced occupational therapy for 11 years. She stepped away from the field last year to pursue her self-described passion in the Down syndrome advocacy domain.
The DSNWV is composed of a volunteer board that meets monthly, virtually over the past year due to the COVID-19 pandemic. “Most of our board members are moms of children with Down syndrome. One gentleman who lives out of state is also on the board; he has a nephew with Down syndrome. He reached out to our organization because he wanted to get more involved in our state,” Orndorff said.
“We just consider it a large support network,” she said. “I got a call from a dad in Morgantown this morning. He had questions about schooling, and I put him in contact with a family I know in that area who could provide some guidance. We’re here when people need us, and we try to get the families involved as much as possible.”
The DSNWV hosts a variety of family-oriented events for fun — and funding — annually, Orndorff said, albeit with modifications impelled by social distancing caveats in recent months.
“In 2019, we had World Down Syndrome Day Bowling. We hosted bowling events all across the state, in Nitro, Bluefield, the Eastern Panhandle and north-central West Virginia,” she said. “We all had our crazy, mismatched socks on and celebrated across the state. But last year, we didn’t, because ... COVID.”
The pandemic also precluded gathering for the group’s fall 2020 Buddy Walk fundraiser, but Orndorff said the 2021 event is already being planned for an in-person return in September.
“Every fall, the National Down Syndrome Society has a national Buddy Walk program,” she explained. “We host it locally and always have it in Charleston at the Capitol. We invite legislators, because we want them to be aware of who they’re making decisions for. Usually, it’s the last Saturday in September; October is Down Syndrome Awareness Month, so we kick that off with the Buddy Walk.
“We have a fun day of music, activities for kids and adults, and baskets are donated with raffle items. It’s the largest fundraiser for our network,” Orndorff said.
Small and large businesses sponsor teams or contribute gift items for the Buddy Walk, she added, and one Down Syndrome Network family member who operates a T-shirt business provides apparel for the event. “It’s nice we can partner with one of our own families who’s been with our network for several years,” Orndorff said.
Gift boxes were shipped to families around the state last year in lieu of the typical Buddy Walk prizes, she said, and she, Hannah and others took part in a smaller-scale awareness walk from Jefferson Road along Corridor G in South Charleston.
Roles and goals of occupational therapy
While marking a Sunday in March and the month of October to raise awareness is helpful, Orndorff and others agree that children with Down Syndrome need attention every day of the year.
To fulfill that need, occupational therapy is key.
According to Randy McCombie, Ph.D., of the WVU School of Medicine’s Division of Occupational Therapy in Morgantown, West Virginia has two occupational therapy educational programs: a master of occupational therapy program at WVU (soon to include an occupational therapy doctoral program) and an occupational therapy assistant program that culminates in an associate degree at the University of Charleston-Beckley (soon to launch a master of occupational therapy program on the Charleston campus).
“Because Down syndrome is a lifespan syndrome, occupational therapists work with clients diagnosed with Down syndrome of every age grouping,” McCombie said. “OTs address a wide variety of delays and disorders commonly experienced by those diagnosed with Down syndrome, including problems with gross and fine motor skills and functioning, attention and concentration skills, cognitive processing abilities, social interaction skills, and especially self-care and daily activities.
“Occupational therapists specializing in sensory integration, for example, help those with Down syndrome who may experience sensory processing disorders, such as problematic disruptions in dealing with normal sound, food tastes and textures, and clothing textures. These specialized OTs help their client-patients better process and respond to sensory information in an active, meaningful and functional manner,” McCombie said.
“When some people find out I was an OT, they think I knew what to expect, but it prepared me in no way, shape or form for a child with a developmental delay,” Orndorff said.
When her daughter undergoes outpatient therapy each week, she said, “I can be involved in those sessions, and they show me how to help her reach those goals. I can communicate Hannah’s needs a little more fluently with the OT training I have, but I’m not Hannah’s OT. I’m her mom. If I’m having an issue, I have a team of people I can reach out to for help and guidance.”
A personal connection
Kassie Frohnapfel, a student in the master of occupational therapy program at WVU from Proctor, near Wheeling, cited a personal link to her career path.
“Down syndrome has always held a special place in my heart,” she said, “because of my cousin, Nathaniel Frohnapfel.
“Growing up, Nathaniel has been more like a brother to me than a cousin, though. I chose to major in occupational therapy because of the impact he has had on my life personally. I have been there through it all and have witnessed his hardships and struggles. I have seen the impact occupational therapy has made on his life for the better.
“I am currently working to promote awareness of Down syndrome and the abilities these children have. I believe that begins by encouraging people to celebrate these amazing individuals on World Down Syndrome Day.”
One way to do so, Frohnapfel said, is for everyone to wear bright, mismatched socks with the hashtag #rockyoursocks on them on Sunday.
“I hope to encourage people to see the ability in these children rather than the disability,” she said.
A lifelong learning experience
Sunshine Therapy Services occupational therapist Alyssa Culicerto works with Down syndrome youths and adults in a 13-county service area of southern West Virginia.
“I was a pediatric therapist 10 years ago and worked with youths ages birth to 18,” Culicerto said. “I started to notice as they turned 18, they didn’t stop needing services — their services needed to change.
“Now I work with them into young adulthood. I’m learning right along with them. As early as birth, we’re always working on foundational skills — strength, sitting, standing and crawling. As they get older, the goals change, like basic health care — dressing themselves, brushing their teeth. A lot of kids need help learning to play,” the Charleston resident said.
Entering adulthood, those with Down syndrome are taught other functional skills, Culicerto said. “For instance, I have an adult client whose big goal is to learn to cook, so we have a live-streamed cooking show for her to watch.
“We teach job skills and we go into the community. I’m teaching my clients how to be a part of society, but also teaching society about working with them, working on money skills, ordering food, those sorts of things, where they might need a little extra time or help.”
She also assists her Down syndrome clients in developing their relationship dynamics and other social skills.
“It’s all based on personality, ability, interests and goals. I’m there to help them as an individual and with their families.
“The important thing to understand is that occupational therapy can provide services through the whole lifespan. There’s always something to be working on, learning and improving,” Culicerto said.
McCombie agreed, adding, “Rather than categorize those with Down syndrome into one cognitive/physical disorder grouping, we should recognize their uniqueness, as well as the many accomplishments of those diagnosed with Down syndrome, including playing sports and musical instruments, graduating high school, attending college, getting married, attaining their driver’s licenses, voting in state and national elections, owning their own businesses, acting on TV and in commercials, and enjoying long, productive, meaningful lives. World Down Syndrome Day gives us the opportunity to celebrate their lives and future.”