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Purpose Prize Winner 2009
Memories of caring for her ill grandfather as a child drove Connie to support other youth caregivers taking on adult responsibilities.
Memories of caring for her grandfather as a pre-teen – giving him medication, even bathing him – often return to Connie Siskowski. She learned firsthand that managing the well-being of relatives at a young age leaves little time for homework or friends and brings stress no child should experience.
With her own background guiding her, Siskowski started an organization in Palm Beach County, Fla., that facilitates support groups in middle schools, offers classes on life skills and provides other resources to ease some of the responsibility and give young caregivers the chance to be kids.
In 2009 Siskowski took home The Purpose Prize.
Connie Siskowski was her grandfather’s main caregiver as he battled the final stages of chronic heart disease. She helped him walk, bathed and dressed him, gave him his medications and slept in the living the room so she could be closer to him in case he needed anything. She was the first one to see and feel that he was no longer breathing. At the time, Siskowski was just 13.
The experience stayed with her, propelling her into jobs in nursing, home health care, and hospice. Eventually, Siskowski felt called to do more. In 2006, she created The Caregiving Youth Project, perhaps the first organization in the United States to help support children who are caregivers to ill or disabled family members including siblings in their own homes or close by.
According to a 2005 study by the National Alliance for Caregiving and the United Hospital Fund, between 1.3 and 1.4 million children nationwide serve as primary caregivers. They cook, clean, dispense medicine, change sheets and diapers, and bear responsibility for much more than homework after school.
Often it’s just too much to ask. Marica Dorzin, 13, is a Palm Beach student who comes home from school to care for both a six-year-old brother and her mom, who has high blood pressure, high cholesterol, and bad allergies.
“I thought I was the only one doing this,” Dorzin says. “I have so much responsibility that I didn’t think anyone could relate to me. But then I found out that there were other kids and they know exactly how I feel.”
In fact, there are lots of kids who understand. A recent survey of 1,626 sixth grade youngsters in the Palm Beach area showed that 563 children were providing some sort of caregiving at home, with 344 of them at the highest level of responsibility.
The Caregiving Youth Project now helps 240 students in five of 33 Palm Beach County middle schools, with many more in various stages of processing. At school, the Project’s staff members offer skills building and support groups, classes on life skills, managing stress, communication and self-care, as well as frequent “lunch and learn” sessions where students can come talk to a social worker and pick up information on resources.
Project staff members also make home visits, both to help the adults in the house understand what their children are going through and to direct them to resources, such as medical care, food assistance, transportation, counseling, or mentoring.
In addition, to provide some respite from the non-stop responsibility, the Project hosts picnics, fun and educational activities, holiday parties, and semi-annual overnight trips to “Camp Treasure.”
Siskowski came to understand the larger issue of youth caregiving in the late 1990s when she founded an interfaith-based nonprofit dedicated to helping family caregivers. The group received a grant to create a comprehensive family support caregiver group, including the formation of a children’s support group.
Siskowski wanted to understand the big picture, so she turned to researchers from Palm Beach Atlantic University and the School District of Palm Beach County who were conducting a survey on what keeps kids from learning. The answers were startling. Nearly half of 11,000 students said family health situations and caregiving played a role in their life. Realizing the problem was deeper than she thought, Siskowski knew she had to create more than a support group.
“I felt a responsibility. Once you find something like that, you have to do something about it,” she says.
Izzy Parrado is the guidance coordinator at Okeeheelee Middle School in Greenacres, Florida. When the Caregivers Youth Project first started, Parrado was stunned to learn nearly one fourth of her sixth graders reported that they were doing some sort of caregiving at home.
The Caregiving Youth Project targeted the students in need of the most help, and Parrado says teachers reported a huge difference in their grades and attendance. If a problem had made it to her desk previously, finding help would have required plenty of research.
“I would have had to connect the dots to get them the right help,” Parrado says. “Instead, with Connie’s help, it is a service we are lucky to provide.”
Siskowski and her colleagues hear new stories every day.
Thirteen-year-old Christina Powell took care of her grandfather, who had bladder cancer and dementia. While her mother works two jobs, Christina gave her grandfather his breakfast and medicine before school, and then took over his care again after school. Joining the Caregivers Youth Project gave her an outlet.
“It was just phenomenal for her to be able to share,” Florence French says about her daughter.
Another student, who takes care of a mother disabled by a car accident with a drunk driver and a sister with an auto-immune disease, came to a stress management class run by the Caregiving Youth Project. Staffers soon made a home visit to assess the girl’s situation.
The Project was able to connect the family to needed resources, provide an aide to accompany the mother to doctor’s appointments so the girl did not miss school, supply a scooter, install grab bars in the bathroom to allow the mother to get up by herself, and build a ramp in the home.
“By strengthening the family and providing simple things like that, you can increase the independence of the person and reduce the workload on the child,” explains Siskowski.
A grant recently allowed the Caregiving Youth Project to provide laptop computers to 75 of the students they serve. Youth caregivers, often from financially strapped families, don’t have home computers and typically can’t get a parent to drive them to the library in the evenings. “One girl told me that now she can save the money she used for the bus to the library to eat lunch,” Siskowski says.
Siskowski’s main goal now is to continue building awareness about the problem of youth caregivers. She hopes to expand to all middle schools in Palm Beach and create a network throughout Florida, and possibly other states, within five years. She is in the process of creating a business plan for the American Association of Caregiving Youth and revamping her website to take the project to the next level and is also looking at technology to create virtual support groups.
Siskowski feels connected to the children she serves. In addition to having been a youth caregiver herself, she has overcome other obstacles in life, including domestic violence in an earlier marriage. “All those horrific experiences help me understand what some of these kids are going through,” she says.
“When you can see that you are able to affect change, it is not work, it is a joy,” she says. “It is just in me. I cannot not do this.”