Connie Siskowski, president and founder of the American Association of Caregiving Youth in Boca Raton, displays art from some of her clients in AACY headquarters. Tim Stepien/The Coastal Star
By Tao Woolfe
It’s difficult to get Connie Siskowski to talk about herself.
Seated in her sunny, plant-filled office, she deflects questions about her status as a local — and even national — hero by talking instead about the secret world of caregiving children.
The children, she says softly, are the real heroes.
When a family member is ill, and hiring help is not possible, kids become caregivers. Their grades suffer, school participation falls off, and their demeanor changes.
About 22% of these children drop out of school to administer medicines, keep house, shop, cook, provide companionship, and help a disabled relative shower or walk.
“Schools look at dropouts and the dropout rate, but often they don’t consider what goes on behind closed doors,” Siskowski says.
Children won’t talk about caregiving, fearing ridicule or reprisal. It’s a hard, lonely role.
Siskowski knows about the weight. She was raised in New Jersey by her grandparents and when her grandfather became ill, she cared for him until she came home from school and found him dead.
Such situations are not rare. An estimated 3.4 million to 5.4 million children in the U.S. help care for ailing adults, according to 2020 statistics.
In Florida, according to Siskowski’s groundbreaking research, more than 290,000 children are helping a sick parent or sibling.
After her grandfather’s death, Siskowski became a nurse — earning bachelor’s and master’s degrees from Johns Hopkins University School of Nursing in Baltimore.
She moved to Boca Raton in 1990, bought and sold a home-care business, and continued a career in family care. Through that work, Siskowski learned about the underground world of child caregivers here and abroad.
A few years later, she took the advice of her husband, Gary: Go get your Ph.D. from Boca Raton’s Lynn University. For her doctoral dissertation Siskowski studied young caregivers in Palm Beach County.
“When I realized the extent of the population, I began wondering how to make a difference,” Siskowski says.
After finishing her degree at Lynn in 2004, she founded the nonprofit American Association of Caregiving Youth and eventually changed the lives of hundreds of children who know her as “Dr. Connie.”
She worked with county middle and high schools to identify children who might be slipping under the tide of their families’ needs. She talked with anyone willing to look beneath the patina of Palm Beach County.
Today, AACY is the only organization of its kind in the United States, offering free support to caregiving kids ages 8-18. It has won many awards.
In 2012, CNN profiled Siskowski’s work in a nationwide telecast.
Municipalities beyond Boca Raton have since asked for AACY’s help to set up similar programs.
AACY’s services include counseling, in-home help, tutoring, equipment, a getaway camp, help with scheduling work, play and caregiving, and — perhaps most important — networking with other caregiving kids.
“When they meet others caring for family members, they realize they are not alone,” Siskowski says.
Julianna Doran was one of the children touched by AACY.
Now 21 and getting ready to start her own life, Doran was in the sixth grade when she met Siskowski.
Doran helped care for her brother Joshua, who has cerebral palsy.
“I would feed, bathe, change — anything you can think of — to help my brother,” Doran says. “Sometimes I did more than I should.”
AACY held events that allowed Doran to meet other caregiving youths.
“I could see that some kids had it worse than me,” Doran says. “It really helped to hear that I was not the only one dealing with that situation.”
Doran says Siskowski is a good listener who does not judge.
“She never had that ‘I’m better than you’ mentality. Everyone has positive things to say about Dr. Connie,” Doran says. “I’m happy to be part of her amazing group.”
Siskowski, 75, says that when her path grows especially steep, her faith keeps her going.
Ken Roughton, Siskowski’s pastor at First United Methodist Church in Boca Raton for more than 20 years, says Siskowski, in turn, “makes a difference in the life of everybody who meets her.”
“Though she’s quiet and understated, she is a strong person who has a clear sense of what God wants her to be doing.”
Every minister hopes his congregants can find ways to embody the gospel, Roughton says. But Siskowski seems to do that effortlessly.
“Connie always finds ways to bring faith to life in the community,” he says.
The American Association of Caregiving Youth relies on donations and volunteers to keep going. For more information, go to https://aacy.org.
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