You expect to receive congratulations on the birth of your child, not condolences.
And yet condolences were what Nancy Gianni of South Barrington, IL, said she received after the arrival of her daughter GiGi in 2002.
GiGi was born with Down syndrome. And like any parent upon receiving the diagnosis, Gianni was daunted by the countless unknowns involved in raising a child with special needs. But she also quickly saw how similar GiGi was to her other children. Gianni resolved to change the way others viewed children and adults with Down syndrome—that they are more than a diagnosis.
So, Gianni founded GiGi’s Playhouse, Inc., a non-profit organization that celebrates the strengths and potential of people with Down syndrome, while giving parents a network of support and resources to help their children grow and thrive.
The first playhouse opened in Hoffman Estates, IL. There, individuals with Down syndrome and their families can receive free therapeutic and educational programing, such as motor skills development, speech and language programs, literacy and math tutoring, and programs for early learners through adults.
Not long after opening GiGi’s Playhouse, Gianni was contacted by a parent who asked about using the model she created to open a similar facility in another community. Gianni helped open that location, which was followed by a request for a third, and then another and another. Today, there are more than 33 active playhouses named for Gianni’s daughter GiGi throughout the Chicago area and beyond—well beyond. In fact, locations now stretch from New York to San Diego, and points in between. The organization has even expanded internationally with the opening of a playhouse in Queretaro, Mexico. Additionally, there are about 200 active inquiries into founding playhouses across the U.S. and in other countries.
In just 15 years, Gianni’s mission to change perception about Down syndrome has become a global movement, serving an estimated 30,000 families worldwide.
Closer to home is the location in South Suburban Tinley Park, IL. Diane Husar opened the 15th in the chain of GiGi’s Playhouses in 2013. Husar said that after giving birth to a son with Down syndrome, she searched for any information she could find to allay her own fears.
“I didn’t have a pre-natal diagnosis,” Husar said. “So, Luke’s Down syndrome was a surprise to my husband and me.” Husar said she just needed to see something positive; so, as she came home from the hospital, she Googled Down syndrome. GiGi’s Playhouse popped up relatively quickly and gave her the information and encouragement that would change her life, and ultimately her career. That initial Google search planted the seed for her to eventually bring a GiGi’s Playhouse to Chicago’s South Suburbs.
“What was attractive to me was I didn’t have to think about how to do it, I just had to have them tell me how to do it,” she explained.
Gathering helps families realize they’re not alone. It also encourages new families when they come and see adults and children smiling and happy. “Because the story out there is once you have a child with Down syndrome, the life as you know it is over,” Husar said. “But it’s so not true. It just becomes a different kind of reality,” so GiGi’s provides support with understanding.
The “Playhouse” name masks serious work: helping individuals learn essential skills.
“We disguise therapy in everything,” Husar said. As an example, she cited the fine motor room. All of the center’s young people have low muscle tone, which means the grip they need for holding everyday objects, like a pencil or a fork, takes considerably more energy than people without Down syndrome. “It’s hard work,” Husar said. “But our fine motor room is filled with toys that make them use their fingers, that they don’t realize they’re having therapy. They just think they’re playing.”
“In every program, we try to do fine motor activities, verbal activities for speech development or physical activity, where kids are climbing through a tunnel or over blocks, or we go outside and do the parachute—everything we do is purposeful.”
GiGi’s locations are also engaged in fulfilling Gianni’s promise to change the way people view Down syndrome. One example Husar cited is a book club that meets weekly at a popular lunch spot. “The intention is to go out and meet in public so that people see a group of 10 individuals with Down syndrome, with volunteers, reading novels, talking about novels, having a social experience in public, being socially appropriate,” Husar said. This allows people to see that young people with Down syndrome can read, talk, have friendships, and order and pay for their food on own. “The whole idea of that group is to change perceptions of people out in the community.”
The playhouse also holds events that are open to the community, which help the goal of increasing familiarity and understanding. The events also promote awareness about the organization’s greatest needs, which Husar says include committed volunteers. “We get a lot of retired teachers who loved what they were doing but who now tutor or run a program,” she said. And as a not-for-profit that relies solely on grants and fundraisers to provide free resources for families, they are always in need of donations from the public.
Husar said she’s indebted to Nancy Gianni for what she started back in 2002, and that the rapid growth of the umbrella organization is a clear indicator that the playhouse idea is meeting an urgent need. “There are so many people who want these playhouses,” she said.
In addition to the Tinley Park and Hoffman Estates locations, other playhouses in Northern Illinois include Chicago’s North Center neighborhood, Rockford, Fox Valley, Bradley, Quad Cities and McHenry.
For more information, visit GiGisPlayhouse.org.
Mark Schmeltzer is a Chicago-based writer
who works in non-profit communications.