Brugman arrived at the family’s home with a $25 Walmart gift card. “We are not teachers, we are not police,” Brugman told me. “We never ask, ‘Hey, are you illegal or not?’ We ask, ‘What is it you need?’”
Brugman had been helping complete paperwork for social service agencies for the family and trying to arrange tutoring and therapy for Kristen. On this Thursday in January, Brugman coached Olga through the process of reapplying for the disability benefits Jusseth was supposed to receive for his A.D.H.D.
When I asked Kristen about her caregiving, she replied, “To be honest, I think I’m starting to hate it.” She wanted to confess something else, too: “Sometimes I’m selfish,” she whispered. “Sometimes when my mom calls at night, I pretend I’m asleep, because I just want to go to bed and I want to be left alone.”
A.A.C.Y. contracts with a home aid agency to offer respite from caregiving and organizes events — museum trips, ice-skating outings, overnight camps — so these youngsters can meet one another, take breaks from their duties and just be kids. When it became clear that Olga’s jerry-built wheelchair ramp was too unstable and their home was falling into disrepair, a staff member rallied her church to help: A dozen churchgoers arrived on a Saturday and went about fixing and cleaning.
The program, which was started in 2006, was born out of a set of questions that its founder, Connie Siskowski, a nurse who was working toward a Ph.D., added to a survey distributed throughout Palm Beach County. The responses revealed an entire population of caregiving youth. They weren’t doing well: Two-thirds missed school-related activities, failed to complete their homework or had their studies interrupted. Siskowski recalls that education officials could not easily ignore the findings, so she was welcomed into the school district, the nation’s 10th largest, to try to help.
