Tracy Balcerek is happiest when she's got a good job and has time to sit outside her Irwin home in a rocking chair, listening to country music on her Walkman and singing along.
But the 30-year-old woman, diagnosed with moderate mental retardation, lost her job at the McDonald's in Delmont when management cut back staff hours. She's told her mother she wants a change. She wants a life more like her sister Lisa's, more independent.
"Every now and then it's like a light bulb goes on," Barbara Balcerek said. "She's said to me, 'Lisa can do that, why can't I?' "
Families caring for children with special needs face a unique set of difficulties. Most children grow up, leave home and take care of themselves -- and perhaps eventually take care of their parents.
Tracy will never be able to do that.
Barbara Balcerek knows Tracy wants to leave home. But she's even more worried about the future when she won't be able to take care of Tracy at all.
"I think a lot of parents, when they have a mentally challenged person in their household, they take it one day at a time," said Balcerek. "They go on not thinking about the future until it hits them in the face."
That's why Balcerek attended a meeting last week at Mother of Sorrows Church in Murrysville about "Celebration of Life," a proposed residential community for mentally and physically disabled individuals.
"I'm like the ostrich, putting my head in the sand," she told the group, about her lack of planning ahead for Tracy.
For many of the parents in the room, Celebration of Life is the perfect answer to the question posed about their children's future.
The community, proposed for a parcel of at least 50 acres somewhere in southwestern Pennsylvania, would provide life-long housing, work and play for the residents under the supervision of health professionals.
The premises would house four businesses: a greenhouse, animal kennel, wood workshop and fishery. On-site therapists and teachers would offer art, music and drama therapy. Residents could learn cooking and play sports.
Tracy Balcerek would have a room of her own, but she'd also be able to work in the garden while listening to her Walkman, or perhaps walk dogs from the kennel. A social person, Tracy could have lots of friends. And most importantly, Barbara Balcerek would know her daughter was safe, taken care of and as independent as possible.
Clare Budd also attended the meeting. Her two older sons suffer from Fragile X syndrome, which can cause severe mental retardation. She's already thought about her teenage sons' futures and says she's not comfortable with sending her children to a group home.
Most people don't understand that a special needs child should be kept busy but will need direction, she said.
"When you talk to [adults in group homes] you realize it's eat dinner, sit in front of the TV," she said. "My children love animals, they love plants, they love water. You don't want to see a child that is capable of involving himself in something productive sitting in front of a video all day."
At Celebration of Life, Budd's 18-year-old son, who functions on the level of a 1- or 2-year-old, could work alongside Tracy Balcerek, who manages more complicated tasks.
"This type of thing would open up different positions where people would have exposure to more life-celebrating roles," said Tina Rusiski, project visionary.
As Rusiski imagines it, the community would be allied closely with local universities. Professors and students could use the campus as a laboratory for new projects and as a training ground for new health professionals.
In fact, Rusiski created the plan for the residential campus during a course at Carnegie Mellon University, where she's pursuing her master's degree in public management. But the idea was so good that she couldn't accept her A+ and move on.
For one thing, talking to parents anxious for a certain future for their children spurred her on.
"I bet some of these people had never been asked, 'What would you like for your child?' " she said. "A community is judged by how we treat the most vulnerable, and it seems like we're failing."
She believes Celebration of Life could begin to remedy that by changing the way people in southwestern Pennsylvania think about individuals with disabilities.
Volunteers, students and visitors would learn that people with disabilities aren't problems, but part of our wider community, Rusiski said.
Now Rusiski is selling her vision to potential donors. She's asking for a donation of a 50- to 300-acre parcel and $1 million in pledged gifts by the end of the year. The project should take between $5 million and $8 million to get off the ground and several years to complete.
But the caregivers are already convinced.
"I'd like to think my child is going to see the dogs in the kennel," said Budd, imagining her son as an adult. "Or that maybe he's walking a dog in the evening, or he's weeding a garden, or bowling with someone on the lawn."
The next public meeting to discuss the planned residential campus will be from 7 to 9 p.m. tomorrow at St. Emma's Retreat Center in Greensburg.
