An exact number is hard to pin down, but researchers think millions of children are involved in caregiving in the U.S. Ronan helps care for his father who suffers from ALS and is dependent on a ventilator and around the clock care. An exact number is hard to pin down, but researchers think millions of children are involved in caregiving in the U.S. – Ronan Kotiya leans over his father, fingers wrapped around a plastic tube he’s about to slide from a tracheostomy hole in dad’s neck.
Their 46-year-old father has Lou Gehrig’s disease, a fatal illness that has taken his ability to speak and walk. A ventilator helps him breathe. He uses eye-tracking software on the tablet to say things, blinks to indicate yes or moves his mouth side to side for no.As many 10 million children in the U.S. may provide some form of care at home, according to researcher Melinda Kavanaugh.
But getting there first involves a daily struggle to balance being a kid with living in a very grown-up world.His opponent, a freckle-faced boy named Charlie, waits a few feet away, ready to smash cars together. First to tip over loses.The children have gathered in the clinic on a sunny Saturday afternoon to learn more about caring for people with Lou Gehrig’s disease, or amyotrophic lateral sclerosis.
“A 10-year-old at school is not going to talk about toileting or bathing their parent, but they are going to talk about it here,” Kavanaugh said. They also put on his socks and shoes, help change his shorts, crush medicines or mix mouthwash with water. In the end, Pandya sees the boys' caregiving as a positive. She hopes Ronan and Keaton eventually look back and recognize how much they gained by helping someone they love.
Sutton has seen the boys regularly for a few years. She’s been trying to get them to recognize and understand all the emotions hitting them so they don't keep everything bottled up.