A Place to Call Their Own - North Carolina Health News
By Rose Hoban
Elizabeth Heenan used to come up from Wilmington to visit with her sister Sarah and stay for a couple of days, but there wasn’t a lot for her to do when she came.
Then, one day in September 2017, Sarah brought Elizabeth, who has Down syndrome, to a place called GiGi’s Playhouse Raleigh, on the Cary border.
Two months later, the young women’s parents packed up their house on the coast and moved to Cary to be closer to GiGi’s, a program geared toward people of all ages with Down syndrome, a genetic disorder which can delay intellectual development and comes with a host of physical issues too.
GiGi’s Playhouse, which opened in June 2016, has quickly become central in the lives of about 475 families in the Triangle and surrounding counties because it provides activities, a place for socializing and connecting, and educational programming for families and people with Down syndrome of all ages, in particular, for the adults.
“School-aged kids are going to school and then the people who are not working, only a very small percentage are employable, as well as go to post-secondary school, so what do they do?” said Jeanhee Hoffman, the executive director of GiGi’s who has a brother, Sam, with Down syndrome. “We’re that kind of answer for some of our families.”
GiGi’s was the answer for Elizabeth, who now volunteers three or four days each week, helping with donor correspondence, coordinating volunteers, and assisting with the literacy program.
Inspired to act
Hoffman, who talks fast and appears to have boundless energy, said she always had dreamed of a place where her brother, now in his 40s, could get more intellectual and social stimulation. A few times each year, he would visit from Chicago, her hometown, but mostly his days lacked purposeful activity.
Ironically, though, the first playhouse is in a Chicago suburb. In the spring of 2015, one of Hoffman’s neighbors had been in the area, noticed the sign, and told her about the program. Hoffman got online and was instantly inspired. The next time she went home to Chicago, she took her mother and brother, and visited.
“I came home that night, told my husband, and was like, ‘Oh my gosh, this place is amazing,’ and he said, ‘What are you gonna do?’”
For Hoffman, the answer was obvious. She started fundraising.
By fall 2015, Hoffman had raised enough money to scout a location and started lining up contractors to renovate the space, which sits in a West Raleigh strip mall between a nail salon and a cheesesteak restaurant. The walls are brightly colored, with photos and posters, and there’s a small step-up platform that serves as a stage.
“When you come into every playhouse, typically there’s music playing and there’s a stage,”
“The reason for the stage is teaching them confidence building, as well as saying ‘I have a voice,’” Hoffman said.
Decorations in the adjoining room are more subdued: There’s a couch and chairs and a large screen television for the adults, along with several classrooms for adult education, a key to the “GiGi Prep” learning program for teens and adults that features tutoring in literacy and math skills.
“Math is a really tricky topic for people with Down syndrome because they’re such literal learners,” said Hoffman She explained that this playhouse has a role in piloting a math learning program this year.
Cooking up a future
When I arrived at GiGi’s, Jason H. handed me a fruit smoothie that he’d whipped up in the kitchenette, where program participants learn basic kitchen skills.
“My brother doesn’t even know how to make a sandwich,” Hoffman explained. “He’s 44 now and he only uses a can opener when he comes to my house because I make him do it. But my mom says, ‘He can’t do it.’”
She explained that many parents, protective and fearful for their disabled children, do things for them instead of pushing them to be more independent.
Once a week, one of the adult participants teaches the others how to make a snack.
“I had one parent say, ‘She can’t do that,’” said volunteer Erin Furr. “I said, ‘Yes, she can. I’ve seen her.’”
“It’s that mentality of ‘They can’t,’” Hoffman added. “So, that’s one of the things we’re working on.”
But the program has taken it a step further. Program leaders were looking for a place where adult participants could use their newfound skills, they settled on local fire departments.
“We partnered with the Holly Springs Fire Department, we buy all the groceries and we go there,” Hoffman said. Then firefighters and adults with Down syndrome sit down to eat together.
Friendships have formed, and firefighters also say they better understand how to communicate with people with a developmental disability, which could save a life during an emergency.
Beyond social stimulation, the program offers adults with Down syndrome educational and occupational opportunities.
Bobby Chadwick, 54, had lived semi-independently in an apartment across the hallway from his mother in Pennsylvania, but even as he lived largely independently, he was functionally illiterate.
When his mom died, he moved to North Carolina to live with a brother. That was two years ago. Now he’s been reading for a year, he said it’s his favorite thing about coming to GiGi’s.
There are professional services for families too. Recently, an attorney volunteered to give a workshop on estate planning for parents who worry about what will happen to their son or daughter after they’re gone.
That’s free, along with all of the services at GiGi’s Playhouse.
Hoffman and her board fundraise to cover the expenses, which run about $150,000 each year. Last year, the program got a $400,000 state grant, which is helping them buy a van and will allow the people at GiGi’s reach out to more rural areas.
Last Saturday, several vanloads of volunteers traveled to Fayetteville to introduce people there to the GiGi’s Playhouse concept. According to Hoffman, more than 25 families of people with Down syndrome, about 60 people total, showed up. They spent the day doing activities, making new connections, and explaining the programs. Hoffman said the idea was to get a feel for the demand to create a “satellite” program there, perhaps once a month.
“There could be parents who want to do something but they don’t know how,” she said. “That’s what GiGi’s has given me, it’s given me a platform to help my brother.”
With this Hoffman got emotional. She talked about her family’s approach to her brother and how they could have enhanced his potential, if they’d only known.
“If we wouldn’t have listened to everyone else saying, ‘He can’t do this, he can’t do this,’ but my mom, all she was told was ‘Give him away, get on with your life.’ You hear all that, you start to believe it,” she said.
“If he’d had a GiGi’s, I think he’d be a completely different person as a man.”