Larkin's Place is in the heart

Larkin's Place is in the heart

Amy Armstrong remembers the very moment it came to her, why it turned out to be her daughter – the child she and her husband, Andy, longed so much to have – who was born with disabilities.

Call it a voice whispering inside her head.

Call it something a mother just knows.

But there she was at the 2007 Polar Plunge for Special Olympics, watching kids dash out of the icy water, and she suddenly just knew that her little daughter, Larkin, was meant to be shared – as the driving force behind a new, all-inclusive recreation center where kids and adults with disabilities could have fun with their families and the rest of the community.

"I think there is a spirit pushing this project," Armstrong says.

A year later, Armstrong's spark of an idea for a recreation center has evolved into a real project called Larkin's Place.

A consultant has done a feasibility study and is working on a plan for the facility. An advisory group is helping with planning and fundraising, and the Champaign and Urbana park districts are taking a look at getting involved as the potential operator of Larkin's Place.

All this work has been going on quietly and behind the scenes, but now Larkin's Place has been pushed into the limelight because it will be the beneficiary of the money raised at Christie Clinic's "Run for the Health of It" on April 12.

Christie Chief Executive Alan Gleghorn, who also has a daughter with disabilities, says he wants to help any way he can to make Larkin's Place become a reality.

"Whatever it takes," Gleghorn vows. "We've been working on a business plan, and it's coming together nicely."

Larkin's Place, as Armstong sees it, would be a multigenerational recreation center with indoor and outdoor play and activity spaces geared to different age groups, along with a gymnasium, a garden, classrooms, a cafe and a host of programs from support groups to respite care for exhausted parents.

Larkin's Place would be a safe and respectful environment for people of all ages with disabilities, Armstrong said. But it would equally serve families with typically functioning children who have so few indoor recreation options during the hottest days of summer and coldest days of winter. And, ideally, it would give these families a real opportunity to interact with their peers with disabilities in a setting in which people can learn from one another.

Project planners would like to see the Champaign and Urbana park districts, which jointly operate the local Special Recreation program, operate this facility – though the money to develop it, currently estimated at $5 million, would be raised privately through the community, Armstrong says.

Larkin's story

Larkin Armstrong was born Oct. 4, 2005. She emerged from her mother hands-first, the age-old sign of a leader, Armstrong writes in her blog.

But how could this little girl be a leader, she once wondered in Larkin's early months, when she'd been born with Down syndrome?

And that wasn't the only crushing blow her parents received after her birth. At 5 months old, Larkin began suffering from frightening, violent head-dropping episodes called infantile spasms, and then, last year, she was diagnosed with a form of childhood-onset epilepsy called Lennox-Gaustaut syndrome.

Armstrong, who also has a 12-year-old son, Chase, from a former marriage, says at first, the seizures robbed Larkin of her ability to smile and play.

"It was like having a child in a coma," she recalls.

Medication is keeping outward signs of the seizures at bay for now, Armstrong said, though doctors warn the signs might return and the seizures might still be occurring inside her daughter's brain.

She and her husband also have Larkin on a special high-fat, no-sugar, strictly calorie-controlled diet that might help control seizures, and they are working with physical therapists to help her learn to walk.

Today, Larkin stands 36 inches tall and weighs in at 28 pounds. She crawls, smiles, babbles and laughs. To encourage her to be up on her feet, the Armstrongs have raised her toys onto wooden platforms, and Larkin pulls herself around them, over and over again.

"Now when we go into her room, she's standing in her crib," Armstrong says.

The idea for Larkin's Place has been in her head since the early months after Larkin's birth, but it solidified when she began meeting other parents who were exhausted by around-the-clock care of their children with disabilities.

Then, she got a glimpse of her family's future through the eyes of her longtime friend, Nadine Brown, who has an adult daughter with Lennox-Gaustaut syndrome. Brown says she becomes so desperate to find someplace safe to occupy her daughter outside their home, she loads her into the car and drives her around town for hours.

There's got to be a better option, she and Armstrong say.

Gleghorn knows all too well how difficult it is to find recreation in the community for children with disabilities.

He and his wife, Lisa, used to take their daughter, Rose, who was born with Down syndrome and autism, to the indoor play area at Market Place Mall when she was younger, he said, but "as she's gotten older that's an issue because of the smaller kids in there."

"She's a sweet little girl," Gleghorn says. "But it's just like she's a very, very young child in a 7-year-old's body."

Gleghorn has also looked down the road at Rose's options for activities after her school years end. And he thinks Larkin's Place would be a great community resource.

"The neat thing about this facility is it's kind of the missing link of resources in our community for kids like this," he says.

The upcoming race at Christie Clinic is about more than raising money, Gleghorn says. It can raise awareness about a gap that needs to be filled.

"When Champaign-Urbana pulls it off ... we can show other communities how to do it," he adds.

Helping fill the gap

Mara Kaplan, a Champaign-Urbana native, has taken a vision similar to Armstrong's and made it a reality in her adopted home of Pittsburgh.

It began when her 14-year-old son was born with severe disabilities, she recalls, and she, too, began looking for recreation outlets for him.

"There wasn't any place," she said.

Kaplan started such a facility called the Center for Creative Play, and became its executive director for 12 years, expanding it from a small playroom in downtown Pittsburgh to a 16,000-square-foot facility serving kids up to age 8, she said.

Now, at Armstrong's request, Kaplan is helping plan a multigenerational facility for C-U.

"What makes Larkin's Place different from any before is that it's for people ages zero to 110," she says. "It's designed for the entire community to come and participate."

And because this place is for everybody, it should also have such things as a game room for teens, a resource library, a weight room, and especially a cafe, "because one of the things that brings people together is food."

Kaplan has conducted a feasibility study in C-U that shows such a place would be well-used. Now for the hard part:

"We need to raise $5 million," she says.

The plan in its current form calls for Larkin's Place to be self-supporting through reasonable admission fees after it is built, and it could also host birthday parties, baby showers and other activities, Kaplan says. That would mean, she added, that if the park districts take on the operation of the facility, it wouldn't be an added expense to taxpayers.

Both park districts are studying the idea at the administrative staff level to see if it could work, financially and otherwise, their executive directors say.

Neither has taken the idea to their governing boards yet, but both see some potential in the concept.

"I believe it's a very creative and very innovative idea," says Vicki Mayes, executive director of the Urbana Park District.

"I see a need for a modern, indoor play space throughout the community," Champaign Park District Executive Director Bobbie Herakovich says. "Most of our facilities were built in the '70s. ... People's recreational needs have changed quite a bit."

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