Millions of Americans with serious health problems depend on children to provide some form of care for their families. Young caregivers balance being a kid with grown-up responsibilities that often go unnoticed outside the home.
These children help cancer patients, military veterans, grandparents with heart disease or autistic siblings. They’re often too young to drive, and their work frequently goes unnoticed outside the home.
Kavanaugh lined up several specialists to teach as part of a program called YCare that she has taken to several cities. A dietitian showed the kids how to make food the right consistency so patients don’t choke. A respiratory therapist explained the important parts of a device that helps people cough to clear mucus.In one training session, speech therapist Heather Gallas discusses eye tracking technology that allows patients to spell out words and communicate with a tablet.
In the afternoon, the kids trade email addresses and phone numbers, and The ALS Association’s Texas chapter starts making plans for a pizza party reunion this summer. Pandya, a senior director with the skin care and cosmetics company Mary Kay, has daytime and evening caregivers for her husband during the week. But she has no paid assistance overnight or on the weekends, so the boys have had to step up.Pandya tries to balance the boys’ caregiving with activities that offer some normalcy. Keaton takes tennis lessons and coding classes. Ronan plays striker on a youth soccer team.Both boys play piano, and Keaton paints prolifically.
Keaton shares a love of food with Rupesh, so he asked for a trip to Italy. The family found a more practical alternative: a drive to an Italian food market and restaurants in nearby Dallas. “Have you guys been laughing like this all day?” Sutton says. “Laughter without any anger or fighting is so wonderful.”The boys head for their mom’s waiting van so they can return home and set up a living room campout.
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