Young carers ‘exist in the shadows’ offer crucial help | News, Sports, Jobs

Ronan Kotiya, 11, removes a compression leg sleeve from his father Rupesh Kotiya as his mother Siobhan Pandya looks on at their home in Plano, Texas, Sunday, April 10, 2022. Ronan helps care for his father who suffers from ALS and depends on a ventilator and 24-hour care. Millions of Americans with serious health conditions depend on children 18 and under to provide some or all of their care at home. An exact number is difficult to pin down, but researchers believe millions of children are involved in caregiving in the United States. Ronan helps care for his father, who has ALS and is dependent on a ventilator and 24-hour care. Millions of Americans with serious health conditions depend on children 18 and under to provide part or all of their home care. An exact number is hard to pin down, but researchers believe millions of children are involved in caregiving in the U.S. AP photo

PLANO, Texas (AP) — Ronan Kotiya leans over his father, his fingers wrapped around a plastic tube he’s about to slip out of a tracheostomy hole in Dad’s neck.

“3, 2, 1, go” the 11-year-old boy said as he pulled out the tube. His mother puts a padded neck brace on her husband and lifts him into a sitting position on their bed.

Ronan’s 9-year-old brother, Keaton, waits nearby, ready to connect their father, Rupesh Kotiya, to a portable ventilator.

“Ronan, do you want to suck daddy’s mouth and get ready to go?” Siobhan Pandya asks after her son steers dad’s electric wheelchair through the living room of the family home in Plano, Texas.

So begins another weekend for the brothers – two Harry Potter fans with mouths full of braces, a knack for building with Legos and heavy care responsibilities.

Keaton Koyita, 9, hugs his father Rupesh Kotiya after helping him get ready for bed at their home in Plano, Texas, Friday, April 8, 2022. Millions of Americans with serious health conditions depend on the children of 18 and under to provide some or all of their home care. An exact number is hard to pin down, but researchers believe millions of children are involved in caregiving in the United States

Their 46-year-old father has Lou Gehrig’s disease, a fatal disease that prevents him from speaking and walking. A ventilator helps him breathe. He uses eye-tracking software to communicate via a tablet.

According to researcher Melinda Kavanaugh, up to 10 million children in the United States could provide some form of home care. Some children are the only caregivers available to patients, while others step in when visiting nurses or other helpers are unavailable.

These children help cancer patients, military veterans, grandparents with heart disease or siblings with autism. Their work often goes unnoticed outside the home.

“They exist in the shadows” said Kavanaugh, associate professor of social work at the University of Wisconsin-Milwaukee.

Kavanaugh and other researchers say the number of young carers is growing and they need support. Caregiving is a task that children like Ronan and Keaton take seriously and that their mother hopes will grow them into caring, strong young men.

But getting there first involves a struggle to balance being a child and living in a very adult world.

The kids spent a sunny Saturday afternoon at Texas Neurology in Dallas to learn about helping people with Lou Gehrig’s disease, or amyotrophic lateral sclerosis. The disease destroys nerve cells in the brain and spinal cord that control muscle movement.

Kavanaugh has brought together several specialists to teach communication, food preparation and the devices patients need. But one of her main goals for her YCare program was simply to give kids a chance to meet each other.

Loneliness is a problem, which has worsened during the COVID-19 pandemic.

“A 10-year-old at school isn’t going to talk about his parents’ toileting or bathing, but they’re going to talk about it here,” Kavanaugh said.

Each of the seven children present, aged 8 to 12, takes care of a parent or grandparent with ALS.

Doctors diagnosed Rupesh Kotiya with ALS in October 2014, a month before his boys were 4 and 2 years old. Ronan and Keaton have no memory of their father without the disease, and they know his condition is getting worse.

Keaton says he finds it increasingly difficult to blink, an essential way for him to communicate. The boy also recalls a recent night when Rupesh slept for over 12 hours and took a long nap the following afternoon.

“I think to myself, should I be worried? » he said.

The boys began stepping in cautiously a few years ago, first wiping away their father’s tears or supporting his head during car journeys.

Then they started helping Pandya move their father in and out of bed or onto the toilet.

They also put socks and shoes on him, helped him change his shorts, and ground up medicine.

Pandya, senior director of skincare and cosmetics company Mary Kay, has day and evening carers for her husband during the week. But she has no paid help at night or on weekends.

Pandya tries to balance caring for her boys with activities that provide some normalcy. Keaton takes tennis lessons and coding lessons. Ronan is a striker in a junior football team.

Play — letting kids be kids — is crucial for development, says therapist Sarah Sutton, who saw Ronan and Keaton for a few years.

“We play the conflict. We play the resolution. We play the stories that are happening within us,” Suton said.

On weekends, Pandya lets the boys camp in the family living room. It started as a treat at the start of the pandemic, when they couldn’t go anywhere else.

But there’s an ulterior motive: having the boys sleep next to their parents’ room makes it easier for them to cry for help.

They may need to get trash bags and gloves if their father has an accident during the night.

Before setting up camp on a recent Friday, the boys change into their pajamas and the family settles into the living room to watch the kids’ show. “Legends of the Hidden Temple.”

The show ends and Keaton takes Dad back to the bedroom, where Pandya lifts him onto the mattress.

Keaton then uses a long wand to suck out the saliva that collects in his father’s mouth.

Pandya finishes getting her husband ready for bed as Ronan and Keaton return to the living room.

There they spread out on sleeping bags, munching on crisps and candy while squeezing some more TV before crawling inside to sleep.

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The Associated Press Health and Science Department is supported by the Howard Hughes Medical Institute Department of Science Education. The AP is solely responsible for all content.

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