When you ask Sara to describe what it’s like to be in college, her list is long and upbeat. “Surprising, inspiring, supportive, thoughtful, fun, friendships, career independence,” says the 21-year-old about her experience at East Stroudsburg University in Pennsylvania, where she’s in her second year of the college’s Career, Independent Living & Learning Studies (CILLS) program.
“I like being who I am and where I am,” she says, with a big smile that confirms that sentiment. Her mother, Susan, is beaming as well. This is exactly where she hoped her daughter would be at this stage in her life.
It was possible because of the guidance of the Trisomy 21 Program at Children’s Hospital of Philadelphia (CHOP), strong support from Sara’s teachers and nondisabled peers from kindergarten through high school, and loving encouragement from her family and friends.
“We’re completely thrilled she’s doing so well,” says Susan. “I know she’s really happy. She was well prepared.”
‘Never hurts to try.’
Sara has been part of CHOP’s Trisomy 21 Program since its inception 16 years ago. Sara’s mother and a handful of other parents of children with Down syndrome organized the first local Buddy Walk® in the Villanova University stadium parking lot to raise funds to help children with Down syndrome, also known as trisomy 21. There was no Down syndrome program or clinic in Philadelphia — no central place to help families like theirs to get answers to common questions about the disorder and its effects. The families brought the funds they raised to CHOP and encouraged the hospital to start such a program.
Today, CHOP's Trisomy 21 Program provides care for more than 2,000 families, has a robust research arm, and continues to grow each year. The annual CHOP Buddy Walk® and Family Fun Day continues to be a critical funding source for the program.
“Through working with CHOP and understanding our children’s possibilities, we learned you need to have goals, which then become achievable,” says Susan. “In our family we always say, ‘It never hurts to try. If you don’t try, you’ll never know.’ That has served Sara well.”
When Sara wanted to try a dance class with nondisabled kids, she did — and then invited her friends to the recital. Did she want to make cookies? Sure, and had friends over for a baking party. Try running track? Why not? Unified Sports, which has a 50/50 split of kids with intellectual disabilities and those who are typically developing, all training and competing together, was the perfect fit. The same for trying out for the local swim club’s team, going to sleep-away summer camp, and being included in regular classes. With modified tests and a lot of hard work, Sara excelled with a 3.7 GPA and was inducted into the Cheltenham High School National Honor Society.
College: From a dream to reality
It was Kim Schadt, MSN, CRNP, CCRP, Co-director of the T21 Program, who told the family about a website, thinkcollege.net, that lists colleges across the country that offer programs for students with intellectual disabilities.
The more Sara and Susan explored different programs, the more excited they became. East Stroudsburg University’s CILLS program had the added bonus of being only 90 minutes away from their home. “Going to college was my goal,” Sara says. She put together a slideshow, highlighting her accomplishments and readiness for college, to accompany her application. She was accepted.
ESU accepts eight to 10 students in CILLS each year. Students take CILLS-specific classes on career exploration, health and wellness, communication strategies, personal finance and more. They can also choose to audit regular ESU classes. Each CILLS student is encouraged to join a campus activity, and Sara became part of the cheer squad.
CILLS students eat lunch and dinner in the ESU cafeteria with other students. Every day they have two hours of exercise at the university fitness center, which some days includes yoga or Zumba class. Each student is paired with an ESU student who serves as a peer mentor, who spends time with them between the end of CILLS programming and when they return to their home.
CILLS students also are matched with a volunteer Best Buddy®. Rachel was Sara’s Best Buddy, and they went to a wide variety of campus events together. “We went to football and lacrosse games and tennis,” Sara says. They’d go to other on-campus activities, shopping or to a movie, often with other CILLS students and their Best Buddies. There are organized Best Buddies events, including a big dance at the end of the spring semester. “We stayed in touch all summer, texting each other,” Sara says. “Rachel follows me on Instagram.”
CILLS students live in houses off campus with a house manager, who is in the house 9 p.m. to 9 a.m. They have assigned chores, have to keep their room clean, and have to do their own laundry. On weekends, they cook their own meals.
“I knew she was doing really well when she didn’t call home for the first 2 ½ weeks,” Susan says. “I finally reached her on her cell and she says, ‘I’m fine, Mom. But I don’t have time to talk. I’m eating lunch with my new friends.’ ’’
Sara’s explanation sounds like any 21-year-old: “It was good to be away from my parents. I need space.”
She did have to make some adjustments to life away from home. There were many new people to get to know and more choices to make. For example, the school cafeteria is set up like a buffet every day, so she had to draw upon what Mary Pipan, MD, Co-director of the T21 Program and her long-time developmental pediatrician, taught her about green, yellow and red food categories.
“Green foods, like salad and fruit, are good for you, so you should eat them the most,” Sara explains. “Yellows are OK, but not too much. Reds, like brownies, are only sometimes, for something special.”
The lesson worked. She didn’t gain a single pound during her freshman year.
Still supporting CHOP Buddy Walk®
When Susan suggested that Sara and her new friends from CILLS come from East Stroudsburg to Villanova for the CHOP Buddy Walk® in 2018, everyone was enthusiastic. A large group of students and Best Buddies from ESU came, with handmade signs, to participate and support the T21 Program.
“It was awesome,” Sara says. “Everyone had a fabulous time. I always love it because I see so many friends who also have Down syndrome at the CHOP Buddy Walk® every year.”
They’ll be there again this year. “Starting a local Buddy Walk here was a way to fund a program,” Susan says. “My chief interest was to start a consolidated health program for children with trisomy 21. A child has to be healthy to learn, to develop, and to have a high quality of life. The healthcare has to come first.”
Mission accomplished. She’s just described her daughter: Healthy and enjoying a high quality of life.