Minutes after giving birth in July 2011, Tawnya Dilly received a shocking blow from her doctor. Dilly was told her newborn daughter had features consistent with Down syndrome. She couldn’t comprehend the news.
“The doctor sounded like the teacher from Charlie Brown — none of what she said made any sense,” Dilly said. “I finally yelled, ‘Stop! We just need some time.’ After that, we just cried. We didn’t know anyone with Down syndrome.”
The days and weeks that followed were frightening, as Dilly and her husband navigated raising a child with special needs. Down syndrome — a chromosomal variation that usually causes delays in physical, intellectual and language development — affects one in every 722 babies born in the United States each year, according to the Down Syndrome Association of Minnesota.
Six months after her daughter Brooke was diagnosed, Dilly discovered GiGi’s Playhouse, an awareness and educational center for children with Down syndrome and their families.
An essential resource
The first of its kind in Minnesota, GiGi’s Playhouse in St. Louis Park provides classes, therapy, playtime, tutoring and a sense of community — all for free and almost all of it provided by volunteers. In a state that’s rich with Down syndrome resources, parents say GiGi’s Playhouse is special because it’s for families and run by families.
Now, Dilly takes her daughter there once a week.
“Here, I walk in the door and feel like I already know everyone,” said Dilly of Victoria. “It’s an instant family.”
Since opening in February, GiGi’s has served more than 250 families and impressed members of the medical community. Dr. Nancy Mendelsohn of the Down Syndrome Clinic at Children’s Hospitals and Clinics of Minnesota, said GiGi’s expands the support system vital to these families.
“Children with Down syndrome and their parents experience a variety of unique health and developmental needs throughout life,” Mendelsohn said. “Resources like GiGi’s Playhouse are essential in establishing the ongoing support and community that families need around these common joys and challenges.”
The nonprofit playhouse, which is funded through individual donations, grants, corporate sponsorships and fundraising events, was started in Chicago by a woman whose daughter, GiGi, was born with Down syndrome. The organization now counts 15 playhouses nationwide, plus one in Queretaro, Mexico.
While the Minnesota chapter is thriving, the program is searching for more volunteers to support its programs, such as its literacy tutoring and teen drama troupe.
“I had no idea the need would be this great,” said Kristen Sweet, local site coordinator and the only paid employee at the center. “Our volunteers keep the programs vibrant, educational, fun and free.”
A second family
At GiGi’s Playhouse, no one is different. For some children and their families, it’s the first time they’re able to socialize without barriers.
“We’re all in this together,” said Jonathan Bush, father of 3-year-old Baur. “GiGi’s fosters that metaphorical hug that we all need sometimes.”
The open space is flooded with natural sunlight, bright colors saturating every corner of the room. All the comforts of home are right here.
New mothers have a quiet nursing room. There’s a full kitchen, comfy couches, jungle gym equipment, toys galore and a large stage area, complete with donated costumes to accommodate the center’s new theater program.
Volunteer designers from Target created much of the space, including the teen lounge, which has music, video games and a cool factor that would appeal to any kid. Although the programs are designed specifically for children and teens with Down syndrome, everyone is welcome.
Teri Palthen of Robbinsdale said she feels a sense of peace when she brings her 3-year-old daughter, Ava, to the playhouse. During a recent visit, Ava poked her head in and out of a Little Tikes playhouse, while Palthen caught up with another parent.
“As parents of these kids, we need support, too. At first, I didn’t know what I was going to do,” Palthen said. “I was lost.”
Training mind and body
GiGi’s tries to provide that needed direction. For parents like Palthen, the center is a place to trade information and stories with other parents. Volunteers fill in the support system with programs: The Young Athletes program prepares 2- to 7-year-olds for the Special Olympics, while a new literacy tutoring program gears up kids for reading success.
Jon and Basma Ibrahim DeVries enrolled their 3-year-old son, Jacob, in the pilot literacy program over the summer. During the research-based program, Jacob learned 30 new words.
“He does well because we’re learning so much about how we should be working with him at home,” said Jon DeVries, of Minneapolis. “I always assumed he should learn the way I did.”
On a recent afternoon, Jacob paged through a book, identifying the duck and tree on the page, adding an enthusiastic “Quack, quack!”
Jacob put the book down to join his friends, Baur and Brooke, who were amused by their reflections in the mirror.
Brooke, now 2 years old, explored her independence while Dilly, her mother, comforted another mother who was visiting the center for the first time.
“You’re at the right place,” Dilly told her. “Brooke is able to explore and learn, and struggle on her own. It’s good for her. It’s good for us.”