For many parents of a child with Down syndrome, the
diagnosis can be an isolating and overwhelming experience. “My first reaction
was, ‘How am I going to take care of my child? How am I going to protect her?’”
says Tracy Nixon, whose daughter Laura, now 7, was diagnosed with Down syndrome
at birth in 2003.
Because the Nixons had decided not to do prenatal testing, the diagnosis came
as a surprise, and they found themselves scrambling to learn about Down
syndrome and the resources available to them. “I probably didn’t sleep at all
the first six months—I spent the entire time scouring the internet,” says
Nixon, who is a graduate of Columbia Business
School and a former executive at
Goldman Sachs.
In September of 2004, Nixon met Debbie Morris, a fellow New Yorker whose daughter
Sophia, only a year younger than Laura, also had Down syndrome. “When Sophia
was born, it was definitely a shock to my husband and me,” says Morris, who is a
senior vice president at Chartis Insurance. “But luckily I was connected with Tracy
the third day after Sophia was born, and she was a tremendous help.”
Beyond their
supportive friendship, Nixon and Morris became very interested in fostering a
more cohesive community for all local
families with children with Down syndrome. In their experience, the informal
network of social service agencies, schools, and websites for families with
children with Down syndrome—or any other special need for that matter—can be
helpful but patchy and porous. And parents who don’t have either the financial
resources or the time to properly navigate it can lose out on identifying vital
services for their child and connecting with other families facing similar
challenges.
That’s why Nixon and Morris are spearheading the effort to
bring a remarkable institution called GiGi’s Playhouse to New
York City.
A Down syndrome awareness and education center, GiGi’s
started in 2003 in the Chicago of
suburb of Hoffman Estates and is now in seven cities
around the country. Its founder, Nancy Gianni, was inspired by her daughter, GiGi.
“I promised I would make the world a more accepting place
for her,” Gianni writes on the GiGi’s Playhouse website [gigisplayhouse.org].
“I remember my first support group meeting—we were in the corner of a sterile
room at the hospital. I just keep thinking, ‘Why isn’t there a place for us?’ That is what propelled me to
create a place where families could come for resources and networking, where
kids with Down syndrome could be the leaders, and where we could celebrate our
diagnosis.”
In May of 2009, Nixon and Morris flew to visit GiGi’s Playhouse’s flagship
location in Hoffman Estates, Illinois.
The first thing that struck them was its exterior, which showcased beautiful
professional photos of children with Down syndrome. The inside was equally colorful
and welcoming, with fairytale inspired-murals and children’s artwork adorning
the walls, and books, toys, games and other interactive projects spread throughout
the space. The playhouse also featured a cozy, living room area for the parents,
which overlooked the children’s play space.
“They had a terrific format,” remembers Nixon. “The kids were playing and there
were volunteers facilitating play, and the parents were bonding and exchanging
resources,” she says. “We were all together just celebrating our children.”
“It was just full of joy, light and happiness,” agrees Morris. “As soon as we
got there, I thought, ‘We have to
bring this to New York.’”
As the president and vice president
respectively of GiGi’s New York City, Nixon and Morris are currently they’re in
the in the process of finding a location, looking for about 1500 to 2000 square
feet of ground floor, storefront space easily accessible by public transit. “Basically,
the most expensive real estate in New York City,”
Nixon says with a laugh. “But the whole point of GiGi’s is to celebrate this
diagnosis and be a visible part of the community, and we can’t do that from the
eighth floor of an office building.”
Like at all GiGi’s Playhouses, the New York center will
offer programming for children and parents, ranging from pre-natal diagnosis
support to classes to help children crawl and walk, to mixers and movie nights for
tweens and teens. All of the programming will be free, with the exception of
the math and literacy tutoring programs, for which there will be a nominal fee
to cover materials.
“This is a real resource—anyone can come
here and participate,” says Nixon.
“GiGi’s doesn’t turn away anyone. If someone with autism walks in, Cerebral Palsy—if
someone is disabled in any way, it’s fine,” Morris agrees. “It’s not only
awareness, it’s acceptance.”
For Nixon and Morris, one of GiGi’s greatest
attributes is that it offers a palpable sense of community to children who
otherwise might not have it.
“In the early years, most children don’t distinguish themselves from another
child, but they do when they get to middle school,” says Nixon. “So when
children with Down syndrome start to lose some of the closeness they have with
their typically developing peers, if they have a strong community of their own,
there’s not this sense of loss. Instead, they can say, ‘I’ve got all these
friends who are just like me.’”
And another wonderful outcome, according to parents from a variety of GiGi’s
Playhouses, is that the educational programs give children a tremendous
academic boost. “Kids with Down syndrome are visual learners who respond well
to repetition, so the more exposure they have to the subject matter, the better
off they are,” says Nixon. “So the intangible support helps with children’s
confidence, and the tangible support helps them in school.”
While GiGi’s Playhouse New York City is already generating
a lot of buzz among city families, the organization is still in great need of
contributions of all kinds, from play volunteers to administrative support to
financial donations, as well as physical items like toys, office materials and
play materials. “We need all skills; no one [who wants to help] will be turned
away.”
“We have already had tons of support in terms of how people want to contribute,
it’s really a community effort and it will take the community to build it,”
says Morris. “I keep saying, GiGi’s is going to rock New York, and I believe it.”
For more information about GiGi’s
Playhouse, visit gigisplayhouse.org.
Photo of play group: provided by GiGi’s Playhouse Hoffman Estates. Photo of Nixon, Morris and their daughters by Andrew Schwartz.
