Shining the Spotlight on Kids Who Care

When Josh was a toddler his father, Duane, was pursuing a seventeen-year military career that included deployments to Korea, Iraq, and Afghanistan. Duane’s cumulative injuries resulted in a brain injury and trauma to his abdomen, neck, back, and shoulder. He has also been diagnosed with post-traumatic stress disorder (PTSD) and hearing loss. Today, Josh is a twelve-year-old eighth-grader in Illinois who reminds his father of directions while driving and coaches him through the steps of chores and car repairs “so they’ll get done right.” Josh’s mother works part-time, so he looks out for his younger siblings and schedules his homework and interests around his father’s needs. Josh manages to fit in his schoolwork but is sometimes too tired to study the way he should, or could, after his other responsibilities.

Josh is one of the 1.4 million “invisible caregivers” — children who help provide substantial care to a family member while trying to be successful students.

The scope of youth caregiving

A study published in 2005 by the National Alliance for Caregiving and United Hospital Fund estimated that at least 1.4 million children ages 8-18 help care for an ill or disabled relative across a wide range of medical and psychiatric diagnoses. Children provide assistance with activities of daily living (ADLs), medications, errands, shopping, and even complex medical procedures such as wound care and tube feedings. In the study, 7 percent of respondents said they cared for a person with a stroke or brain injury. That means that 98,000 of those children helped family members who had additional cognitive, memory, mobility, psychological, or behavioral issues. That number is likely higher today since brain injuries, blast injuries, and PTSD continue to rise.

Supporting children as caregivers and students

Connie Siskowski, RN, PhD, president of the American Association of Caregiving Youth (AACY), founded the only organization in the U.S. with the mission to provide education, awareness, research, and direct services for caregiver youth and families. Dr. Siskowski says, “Youth caregivers should be given resources and support to graduate from high school and become healthy, productive adults.” To that end, the Caregiving Youth Project (CYP) is the AACY model program that works in partnership with the School District of Palm Beach, Florida. Last year CGP served 567 students. They provide home evaluations to link families to support services, tutors, educational programs, and social activities.

Dr. Siskowski attributes the invisible and neglected status of youth caregivers in part to lack of awareness among teachers and healthcare professionals. “People don’t look at the back story,” she says. “If mom can’t drive, that limits what the child can participate in, and means that mom can’t get to the school conference. It’s like peeling an onion. When we ask questions, we keep running into difficult situations.”

Begee, an enthusiastic participant in the Caregiving Youth Project, is almost 13 and in the seventh grade. In 2012, her mother was diagnosed with a tumor under her spine. Surgery was helpful, but she was left with chronic pain and poor balance. Begee says, “I am a human crutch because my mom has to hold on to me so she won’t fall over.” Begee praises her eight-year-old brother for knowing more about helping the family than most boys his age. Begee juggles the important job of helping to care for her infant sister — carrying, changing, and feeding her — plus house cleaning and cooking. Her responsibilities take about four hours in the evening, and then she does her homework while her family sleeps.

Studies have shown that caregiving can negatively impact children emotionally, physically, academically, socially, and behaviorally. Many families affected by brain injury or PTSD know how hard it is to live with the injured person’s angry outbursts and unpredictable behavior. That’s difficult for Josh’s family too. “The biggest challenge is having to live with the yelling, arguing, and upset feelings every day. It comes from Dad’s PTSD and frustration about what he can’t do himself,” says Josh.

Josh credits caregiving with teaching him car repair, kitchen organization, and “grown-up stuff.” Like many young caregivers, he rarely thinks about what he needs. Even though his mom tries to give Josh breaks, he’d feel better with more time off for fun with friends. He is aware of financial strains but would fix his bike or play golf if he could afford it. He takes quiet time in his room to de-stress.

Begee’s friends pitch in to help when they visit, but she misses going to sleepovers at their homes. One benefit has been that “Mom and I are closer now because before Mom’s surgery I went out with my friends, but now she and I are always together. Helping Mom now prepares me for when I grow up. I might be a doctor. If I wasn’t here, someone else would have to be here.” Begee and her father know how to ask other family members for help, which they usually receive.

Resources for youth

On the first day of sixth grade, Begee took a test that showed she was eligible for AAYG services. She enthusiastically outlines her reasons for being an active participant. “AACY is like my second family. I’m always at events because I get to meet students from other schools and realize I’m not the only one who is a caregiver.”

The program includes a weekly skills building group where Begee learned to recognize medical emergencies and better manage stress. To reduce her stress level, Begee says, “I usually stand outside, take a deep breath, and release anger. I also sing to myself.” Many of the skills she has integrated, including communication, problem solving, and decision making, boost her confidence and make it somewhat easier to focus on schoolwork while being an effective caregiver. On a CGY camping trip, Begee made new friends, swam, and mastered the rope course.

Josh enjoyed the respite program at Camp Eagle Rock designed to strengthen military and veteran’s families, and American Wanderer youth camp, which offers scholarships to military families.

Advice from the experts

Begee says one outstanding need of young caregivers is to be recognized in their schools and communities. She’s referring to both identifying children in need of specialized services and honoring the critical role they play in helping disabled family members remain at home. She recommends more media coverage of youth caregivers’ issues. She adds, “I want to say that CYP is an amazing project to be part of and more kids need to have this opportunity.”

Josh offers mature advice to other caregivers. “Try to stay out of arguments and help out a lot,” he says. “Take a break whenever you can get it.” He recommends that families avoid the cycle of unproductive arguments and focus on doing fun things together to make the most of relationships. Josh sums up his goal: “If you have a good relationship you can work towards having a better life with less stress and sadness about the injuries.” Josh is writing a book to help other kids.

Dr. Siskowski has advanced the AACY goal to replicate the CYP model across the U.S. AACY is developing affiliate agreements with school systems in Ohio, New York, New Jersey, Arkansas, and Maryland to benefit students. “We’ve only just begun, and it takes a community to support youth caregivers,” she says. “We welcome anyone who wants to begin this work in their areas!”