The most challenging time to be a parent of a child with disabilities can come right after the child's 22nd birthday, when he or she is no longer eligible for services through the school system and gets "kicked off the bus."
That's what Becky Pundy of Lisle hears time and time again in her work as founder and executive director of Respite Endowment Organization, a nonprofit group that provides rest breaks for parents whose children have special needs.
"The transition seems to be the hardest point. All of a sudden, all the support is taken away," Pundy said. "That's why some of these parents are so desperate."
Yet Pundy's organization, founded in 2013, until recently didn't serve parents whose children were in the thick of those trying transition years. The cutoff age for respite services was 22, and the oldest child whose parents she's served has been 19.
"(Parents are) left up to their own devices to figure out the system," she said, and that often leaves them struggling to arrange work or day activities, recreation or social activities, transportation and housing and medical care for their children who've now become adults. "Their child has been fully engaged, and now they're sitting at home watching TV."
Hearing of transitioning parent struggles one too many times led Pundy to act. She expanded the maximum age of a child whose parents can apply for a rest break to 25.
"It's always been important to me to provide a little bit of a bridge while they're going through this transition," Pundy said.
What her organization offers is some relief.
Parents apply through the Respite Endowment Organization website and can choose to arrange eight hours of care for their child with disabilities, so they can do something else or ask for three gift cards for relaxing or luxury experiences such as a hotel stay, high-end restaurant meal or massage.
Respite Endowment Organization has helped 30 parents so far within its service area of Lisle Unit District 202, Naperville Unit District 203 and Indian Prairie Unit District 204. Accepting parents with older kids is one way the small nonprofit can broaden its reach before it builds the capacity to help parents from all over the suburbs, Pundy said.
Naperville resident Min Wang has experienced the benefits of respite in recent months when she needed a break from the constant care of her youngest son, Aidan Chen, who has autism. Aidan is 8 and has begun to show some aggressive tendencies, his mother says. He receives frequent speech and occupational therapy and always needs supervision.
"I can't really leave him alone or even with his brother," Wang said. Yet Wang works full-time as a structural engineer for a firm in New Jersey, where the family lived before moving to Naperville last summer. Her husband commutes to Chicago where he works as a lawyer and is hardly home to help with Aidan's care.
"I like my job and what I do, but sometimes I can't balance it," Wang said. "Sometimes I get up at 4 a.m. and start working because I know when the kids are up, there's no way you can work. Sometimes I have Aidan sit next to me at the kitchen table and work next to him, but it's distracting. I'd rather have someone dedicated to watch him."
Until she can get additional help for Aidan through the state's waiting list for disability services, Wang has twice called upon Respite Endowment Organization to grant her a free caregiver, receiving help for 16 hours total. She said the professional help from BrightStar Care, a home care and health agency that partners with the respite group, has allowed her to take conference calls, shuttle her other son, 10-year-old Justin, to summer activities and focus on one thing at a time instead of always multitasking.
Respite Endowment Organization also aims to create a monthly drop-in respite program at the Alive Center in Naperville for parents such as Wang to leave their kids for a few hours to do errands or spend time with siblings. The group is piloting the three-hour session with care provided by volunteers in October in hopes of offering it to the public in January, Pundy said.
"There's not a lot of options as far as respite goes," said Jenna Olznoi, a recreation therapist who is volunteering to establish the drop-in respite sessions. The service, she says, will be out there every so often for caregivers just to get a few hours to themselves.
Teens, college students or others who are interested in learning to care for people with disabilities can sign up for a REST (Respite Education and Support Tools) training session through the Respite Endowment Organization website. Olznoi plans to host the trainings, which she said leave people fully equipped to communicate with and meet the needs of someone with developmental disabilities.
For parents like Wang it all adds up to one pleasant feeling: "peace of mind."