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Emily Oberneder pads barefoot on the carpet in the TV room of her home. Her face, framed by brown pigtails, lights up when an imaginative little boy named Caillou appears on the television screen. Caillou holds her attention for a few moments, before a 3-year-old’s natural restlessness sets in and Emily is off to the next thing. After stopping to share her crackers with a visitor, she climbs happily onto her mom’s lap, an iPad in tow.

Emily is a curious, playful, engaging little girl. She also has Down syndrome. Her diagnosis shortly after birth was a surprise to her parents, Dan and Kathleen, who met as undergrads at Marquette. But it laid the groundwork for the most pivotal undertaking of their lives — that is building a Milwaukee location, the very first in Wisconsin, of GiGi’s Playhouse, an established, nonprofit achievement center for individuals with Down syndrome.

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It is not simply for the Oberneder family, which includes daughters Lily, 8, and Caroline, 5, that the Mequon, Wis., couple embraced this cause. It is for the community — individuals of all ages with Down syndrome, their families and society at large.

Approximately 1 in every 691 babies in the United States is born with Down syndrome, according to the National Down Syndrome Society. The most common form of Down syndrome is Trisomy 21, which refers to a baby having three copies of the 21st chromosome.

The Oberneders describe the devastation they experienced upon receiving their daughter’s diagnosis. “The moment Emily came out, the oxygen left the room,” says Kathleen, Comm ’95. “The nurses, the obstetrician can’t say anything until a pediatrician makes the diagnosis.”

Physical traits such as the shape of a baby’s eyes can indicate Down syndrome, but a chromosomal test, called a karyotype, confirms the diagnosis. Says Kathleen of that awful period in the hospital before the diagnosis: “I will never forget the nurse in labor and delivery was crying when she left.”

For other families in the same position, Kathleen and Dan, PT ’95, say they would edit the birth story of a baby with Down syndrome to be like every birth, a time to express joy — not sorrow. “Hold the baby and the parents and say, ‘Congratulations’,” suggests Dan. It may not change the dated perceptions of what someone with Down syndrome is capable of, but it can help, the Oberneders argue.

An additional source of anxiety for them was leaving the hospital with a baby whose needs surpassed resources they could turn to for support. The couple knew they needed guidance as parents rearing a child who faces additional challenges.

Kathleen and Dan immediately immersed themselves in all things related to Down syndrome. One of Kathleen’s first calls was to a friend in Dallas, the mother of an 8-year-old son with Down syndrome. “If anyone could give wisdom, it was her,” says Kathleen. Through family connections and networking, they also were introduced to a few local parents who are dealing with the same diagnosis but more complications. Some have children with serious medical issues such as heart problems that often accompany the syndrome.

In the difficult days and months after bringing their daughter home from the hospital, Kathleen and Dan mourned what felt to them like a “death.” And, yet, solace in an unconditional, unjaded form surrounded them. “I was emotionally grieving,” recalls Dan, “and our girls reacted with nothing but love. They had a hard time understanding why we cried all the time.”

Casting a wide net for resources for their family, the Oberneders learned about GiGi’s Playhouse and made the 100-mile trek to GiGi’s in Hoffman Estates, Ill. Named after founder Nancy Gianni’s daughter GiGi, whose bubbly personality shines through in photography on the website, the center “immediately hugs you,” says Dan of their first experience. “It’s a place where we as parents can talk to other parents going through the same thing.”

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GiGi herself is not intimidated by being thrust into the spotlight, her mom says. Three years ago, the then-9-year-old spoke at an event for 1,100 people at Chicago’s Navy Pier. “She stood up straight and ran her hand down the front of her dress, which reminded her to calm herself,” recalls Gianni. “She knew she was there to talk about her life. GiGi’s has given her the self-esteem to stand up for herself.”

GiGi’s Playhouse programs weren’t created to take the place of conventional school education, but, rather, to build on those teachings and offer more specialized learning. The point is to maximize self-confidence and help individuals with Down syndrome meet their potential. GiGi’s does that by offering literacy and math tutoring; playgroups; family night; programs for gross motor development to combat hypotonia, or low muscle tone; karate and cooking classes; and much more.

“One of the biggest reasons I want to be involved is that new parents need help and hope,” Dan says.

The beauty of the playhouse model, which Gianni calls a “place to celebrate,” not a sterile environment, is that it teaches acceptance. And “acceptance is action,” says Gianni.

The Oberneders returned home from that 2013 visit to GiGi’s with a mission. GiGi’s lists the steps to opening a location on its website. It starts with outreach to area families of children with Down syndrome and recruiting people interested in being part of a team as board members, fundraisers and so on. Kathleen connected with local moms, including Emily Peters, whose 10-year-old son Gaige has a dual diagnosis of Down syndrome and autism. Peters speaks of the lack of resources available to them when Gaige was born. “Our family felt really alone,” says Peters. She joined the drive to build GiGi’s Playhouse Milwaukee as secretary of the board.

Fundamental to the core tenets of educating, inspiring and helping individuals achieve is that the programs are offered free of charge. The inability to pay should not deter anyone from achieving his or her potential.

Beyond knowing the achievement center “could enhance Gaige’s life tremendously,” in terms of socialization and building on the educational framework laid at school, Peters says the GiGi’s bond is like “being part of an extended family. This is a place ‘to belong.’”

Knowing the center would benefit their child was one thing. Taking into account Kathleen and Dan’s upbringing (which instilled the “drive to serve others,” says Kathleen) and their Marquette education, which emphasized advocacy and social justice, the couple understands that this effort isn’t only about Emily. “Unless other individuals excel, Emily will be brought down, too,” says Kathleen. “The body has unlimited ability to improve. It just needs direction.”

GiGi’s Playhouse is staffed by volunteers and offers 30 educational and therapeutic programs created by licensed professionals. In 2013, more than 16,000 children and adults benefited from GiGi’s programs.

The Oberneders had little trouble conveying that message to the people who now comprise their team, some of them fellow alumni. Marci Pelzer, CJPA ’95, a former classmate who has a background in public relations and fundraising, calls the Kathleen and Dan co-founder combination “magical.” It was no surprise to her that the duo galvanized efforts and raised more than $100,000 to open a Milwaukee location.

Fundraising continues in earnest. “Dan has amazing interpersonal skills, and Kathleen, with her business skills, is a dynamo,” says Pelzer, whom Kathleen sought for advice on nonprofits. “I jumped on board,” Pelzer continues.

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GiGi’s Playhouse Milwaukee is a quintessential grassroots effort, with everyone on board rolling up their sleeves, making calls, sending letters and emails, planning events, and recruiting volunteers. The Oberneders and their dynamic board recently announced that GiGi’s Playhouse Milwaukee will be located at 8629 N. Port Washington Road, in the Riverpoint Shopping Center in Fox Point, Wis. Another center is due to open in Madison, Wis.

In a blink, Emily Oberneder has switched the game she was playing on the iPad to a show on Netflix. Her parents reach for the device to turn it off. They know their child has access to tools that will empower, educate and build confidence. They’re making sure of it. Her mom says it best: “I can do as much as I want in these walls for my child. But if I don’t get out there and advocate and empower … This is an opportunity to do it in a tangible, physical world.”

GiGi’s has grown to 16 locations and counting since Gianni launched the first center in 2003, The centers’ distinct placement in strip mall locations with strong visibility makes them feel  rooted in a community.

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Comments

  1. Our son w/Downs is 50 yrs old. A great-grandson was born on his recent birthday. How sweet is that? Our journey started like that of the Oberneder family, but went very different direction. Patrick is the youngest of seven children and his retardation severe. Our comprehensive education began immediately with a visit to “Little Angels” while Pat remained in the hospital with jaundice. That was a home for children from Cook County, IL. where they were given 24/7 care for every disabling diagnosis imaginable. We were in our early thirties and saw a child with Downs for the first time.

    Like the Oberneders, we became advocates wherever we lived. Don served on committees in Miami and Fort Myers, FL that made surprise visits to state and private residential facilities and reported abuses. Eileen marched with other Moms in front of Atlanta’s Capital building. Their signs said “Love is not enough!” calling attention to those children being housed, but not educated.

    Pat did not walk until he was 3-1/2 years old and does not talk, but signs. He lived at home sixteen years before moving into a group home. He had been on their waiting list two years..

    We were fortunate to be living in Oshkosh, WI then and Don served on the board of RCDD.. Residential Care for Developmental Disabilities spun off from Association of Retarded Citizens when two mothers knew something needed to be done locally to replace facilities being closed by the state. Families had one weekend of respite care a year provided by UW/O Special Ed students. More was needed and services continued to expand. .

    Today that umbrella organization is Clarity Care and it’s the secondary beneficiary of a Marquette CRUT. Having a child with Downs has been a challenge and a blessing.

  2. Our son with Downs is 50 years old. Parents and siblings face similar, yet often different, challenges. With God’s grace, we have a way to meet them.

  3. Marquette University-College of Nursing ’76 grad. I have a granddaughter who has Down Syndrome. She is now 5 yrs. old and she is my pride and joy. Yes, I did weep with worry when she was born. I was worried about her heart condition, and i was worried about her father, our son, who was ill with a brain tumor. But our little granddaughter was our little miracle. She had just turned 2 yrs. old in June and in September when her daddy became ill, she became his little caregiver. I was amazed at her ability to attend to his needs. If he left anything on the table when he moved to his chair, she would notice immediately and bring it to him. She would make sure his walker was turned in the correct position so he could get to it when I would help him down the stairs. She may still be learning to talk today, but 2 years ago she was her dad’s favorite hospice nurse.

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