PLANO, Texas ( Associated Press) — Ronan Cotia leans over his dad, fingers wrapped around a plastic tube he’s about to slide through a tracheostomy hole in dad’s neck.
“3, 2, 1, go,” the 11-year-old says as he removes the tube. Her mother slips a padded neck brace on her husband and lifts him into his bed-ridden position.
Ronan’s 9-year-old brother, Keaton, waits nearby to connect his father, Rupesh Kotia, to a portable ventilator.
“Ronan, do you want to suck on Daddy’s mouth and then get ready to go?” Siobhan Pandya asks after driving his son’s father’s power wheelchair into the living room of the family’s Plano, Texas, home.
“Thanks dude, good job,” a robotic voice erupts from the tablet Kotia uses to speak.
So begins another weekend for the brothers—two Harry Potter fans with mouths full of braces, a knack for building with Lego, and some overwhelming caring responsibilities.
His 46-year-old father has Lou Gehrig’s disease, a fatal disease that has lost his ability to speak and walk. A ventilator helps him breathe. He uses the eye-tracking software on the tablet to say things, blink to indicate yes or turn his mouth to one side for no.
According to researcher Melinda Kavanaugh, 10 million children in the US may be providing some form of care at home. Some children are only caregivers, while others fill in when nurses or other support are not available.
These children help cancer patients, military veterans, grandparents with heart disease, or autistic siblings. They are often too young to drive, and their work often goes unnoticed outside the home.
“They exist in the shadows,” said Kavanaugh, an associate professor of social work at the University of Wisconsin-Milwaukee.
Kavanaugh and other researchers say the number of young caregivers is on the rise, and they need support. Caring for is a task that kids like Ronan and Keaton take seriously and something that their moms hope will shape them into empathetic, strong young men.
But getting there first involves a daily struggle to balance with a child living in a grown-up world.
Ronan clutches a handful of toy cars and suffocates on the floor of the clinic at Texas Neurology in Dallas.
His rival, a skittish boy named Charlie, waits a few feet away, ready to smash the cars together. The first to tip on defeat.
“You’re all brutal,” says Evie, a skinny 9-year-old who is prone to spontaneous dancing.
Children gather at a sunny clinic Saturday afternoon to learn more about caring for people with Lou Gehrig’s disease, or amyotrophic lateral sclerosis. These seven children — ages 8 to 12 — help care for a parent or grandparent with ALS, a disease that destroys nerve cells in the brain and spinal cord that control muscle movement. Is.
Kavanaugh lined up several experts to teach as part of a program called YCare, which she has taken to several cities. A dietitian showed the children how to make food to the right consistency so that patients would not suffocate. A respiratory therapist explains the important parts of a device that helps people relieve cough.
In a training session, speech therapist Heather Gallus discussed eye-tracking technology that allows patients to pronounce words and communicate with tablets.
She holds a laminated letter board and asks the kids to try it. Avi silently points to each letter in her name.
Then Keaton takes a turn.
Suction.
Gallas pauses, “Does your dad really need such a thing?”
Keaton shook his head.
In addition to providing training, one of Kavanaugh’s main goals was to allow only young caregivers to meet. Loneliness is a problem, which has become worse during the COVID-19 pandemic.
“A 10-year-old at school isn’t going to talk to his parents about taking the toilet or shower, but they’re going to talk about it here,” Kavanaugh said.
In the afternoon, kids trade email addresses and phone numbers, and the Texas chapter of the ALS Association begins planning a pizza party reunion this summer.
Doctors diagnosed Rupesh Kotia with ALS in October 2014, a month before her boys turned 4 and 2. Ronan and Keaton have no memory of her without illness.
He began pitching with care a few years ago by wiping his father’s tears or raising his head during car rides.
Then he started helping Pandya get his father out of bed or to the toilet. When she picks him up on the seat they pull down his shorts and underwear.
They also put on his socks and shoes, help him change his shorts, crush drugs or mix mouthwash with water.
Pandya, a senior director at the skin care and cosmetics company Mary Kay, has day and evening caregivers for her husband during the week. But she hasn’t received any paid support overnight or on weekends, so the boys have to step in.
“To be honest, they are doing things that some adults don’t want to do,” Pandya said.
Pandya tries to balance the care of the boys with activities that provide some normalcy. Keaton takes tennis lessons and coding classes. Ronan plays a striker on a youth soccer team.
Soccer balls, Frisbees and basketballs were scattered around Cotias’ small suburban backyard.
Both boys play the piano, and Keaton paints brilliantly. Stacks of his work fill the shelves in his upstairs playroom.
Ronan, who wrote a short book about his father, sees his father’s fight against ALS as a superhero fight. He and his brother are among the many weapons used.
Keaton sometimes shows his frustration, especially at the amount of care his father has given him.
“He’s been having some accidents over the past few days,” Keaton said. “Once he went three times that day, and I was really looking forward to doing something that day, but I couldn’t do it because … yeah.”
In the end, Pandya sees taking care of the boys as positive. She hopes that Ronan and Keaton will eventually look back and recognize how much they have earned by helping someone they love.
“If you’re taking care of someone whose clock is ticking, you don’t want to take that time away,” she said. “Being able to wipe your tears or wipe your mouth or hold your hand, those are some memories they’re going to cherish.”
The boys learn that their father is deteriorating.
Keaton says it’s becoming increasingly difficult for her father to blink. She remembers a recent night when Rupesh slept for more than 12 hours and then took a long nap the next afternoon.
“I’m like, should I be worried?” They said.
Frustration, devotion and heartbreak swirls in his still-developing mind.
Physician Sarah Sutton recently gave boys a bucket list of things they want to do with their father.
Keaton shares a love of food with Rupesh, so he asks for a trip to Italy. The family found a more practical option: a drive to an Italian food market and restaurants in nearby Dallas.
Sutton has seen the boys regularly for a few years. She is trying to make them recognize and understand all the emotions that are hitting them so that they don’t keep everything bottled up.
When they go, she also tries to give them a fun activity that they can control. Play – being a child of children – is vital to development.
“We play conflict. We play resolve. We play the stories that are going on inside us,” Sutton says.
During a recent visit, Sutton broke down the board game Candy Land. She tells the boys that each colored card in the game will represent an emotion, and they must decide which card is which.
Then they draw cards with the idea of discussing whatever emotion comes up.
Sutton also tries to persuade the boys to talk about their father. They divert attention instead of focusing on a painting on his wall. Then comes singer Rick Astley.
Keaton pretends to be a doctor. “do you have GF?” he asks.
“No, you’re a terrible doctor,” Ronan replies.
Ronan only allows at one point that his father is “doing well.”
Sutton drew a double green in his game. It represents hatred or unfairness.
“I think it’s unfair that terrible things happen to people,” she says.
The boys avoid the bait. They eat Hershey’s kisses. They trade scribbles on a single sketch. Somebody said Sessions fits of giggles.
“Have you been laughing like this all day?” says Sutton. “How wonderful it is to laugh without anger or fighting.”
When the session ends, Sutton’s floor is strewn with candy wrappers.
The boys head to their mother’s waiting van so they can return home and set up a living room campout.
Pandya began letting Ronan and Keaton roll sleeping bags on their living room rug each weekend during the pandemic. It started as a feast when they could not go anywhere else.
Rupesh started using ventilators just before the pandemic hit. The boys stayed home from school for 17 months as Pandya tried to prevent everyone from contracting the virus.
It also has an ulterior motive in allowing campouts: It makes it easier for boys to call for help by sleeping next to their parents’ bedrooms rather than upstairs in their shared room.
Boys may have to pick up garbage bags and gloves if the boys’ father has an accident at night.
Before setting up camp, the boys change into pajamas, and the family settles in the living room to watch the children’s show “Legends of the Hidden Temple.”
Ronan and Keaton curl up on a couch and make love, while Pandya changes her husband’s shirt and pours medicine into his feeding tube. Ventilator humming.
The show ends, and Keaton takes his turn to take Dad back to the bedroom, where Pandya picks him up on the mattress.
Keaton uses a long stick to collect saliva in his father’s mouth.
Ronan then holds his father by his side as Pandya straightens her husband’s shirt and shorts.
After that, the boy gently pats his father on his back and lays him flat.
Pandya ends up getting her husband ready for bed while Ronan and Keaton head back to the living room.
There, they spill over sleeping bags, chewing chips and candy as they squeeze in a little more TV before crawling inside to sleep.
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Associated Press Video journalist Shelby Lum contributed to this report. Follow Tom Murphy on Twitter: https://twitter.com/thpmurphy
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