Young educators “exist in the shadows”, offering important help – NBC4 Washington

Ronan Cotia leans over his father, wrapping his fingers around the plastic tube he’s about to slip out of the tracheostomy hole in Dad’s neck.

“3, 2, 1, go,” says the 11-year-old, picking up the phone. His mom put a strap on her husband with a soft pad and lifts him into a sitting position on their bed.

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

“Ronan, do you want to suck Dad’s mouth and then get ready to go?” Shian Panda asks after her son delivers Dad’s wheelchair to the living room of the Plan family home, Texas.

“Thank you, my friend, good work,” cracks a robotic voice from the tablet Kotya is talking about.

So begins another weekend for the brothers – two Harry Potter fans with full mouths of braces, the ability to build with Lego and some heavy care responsibilities.

Their 46-year-old father is suffering from Lou Gehrig’s disease, a deadly disease that has deprived him of the ability to speak and walk. The ventilator helps him to breathe. He uses eye-tracking software on the tablet to say something, blinks to show “yes,” or moves his mouth from side to side to say “no”.

According to researcher Melinda Cavanaugh, about 10 million children in the United States can provide some form of home care. Some children are the only caregivers for patients, while others fill in when visiting nurses or other care is 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 Cavanaugh, an associate professor of social work at the University of Wisconsin-Milwaukee.

Cavanaugh and other researchers say the number of young educators is growing and they need support. Caring is a task that children like Ronan and Keaton take seriously, and what their mother hopes will shape them into sensitive, strong young people.

But the initial path involves a daily struggle to balance the child and life in the very adult world.

Ronan takes a few toy cars and kneels on the floor of a clinic in Texas Neurology in Dallas.

His opponent, a freckled boy named Charlie, is waiting a few feet away from him, ready to smash cars together. The first to roll over loses.

“You’re all savages,” says Evie, a skinny 9-year-old girl prone to spontaneous dancing.

The children gathered at the clinic on a sunny 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 parents or grandparents with ALS, a disease that destroys nerve cells in the brain and spinal cord that control muscle movement.

Cavanaugh gathered several specialists for training as part of a program called YCare, which she brought to several cities. The nutritionist showed the children how to make food of the right consistency so that patients do not suffocate. A respiratory therapist explained important parts of a device that helps people clear mucus from coughing.

In one training session, speech therapist Heather Voice discusses eye-tracking technology that allows patients to say words and communicate with a tablet.

She holds a laminated sheet and asks the kids to try it. Evie silently points to each letter of her name.

Then Kitan takes the turn.

ABSORPTION.

The voice pauses, “Is that what your dad really needs?”

Kitan nods.

Apart from teaching, one of Cavanaugh’s main goals was simply to enable young educators to meet. Loneliness is a problem that worsened during the COVID-19 pandemic.

“A 10-year-old at school won’t talk about his parents’ toilet or bathing, but they will talk about it here, ”Cavanaugh said.

Between the COVID pandemic and regular stress in student life, children could use their mental health days at school, says Dr. Michael Enenbach. The pandemic “is a kind of collective trauma we’ve all dealt with … the consequences could have been observed in two or four years.” He recommends using a child’s mental health day for fun, away from school stress – and knowing when it’s time to seek professional help.

In the afternoon, children sell email addresses and phone numbers, and the Texas ALS branch begins making plans to meet for pizza this summer.

In October 2014, a month before his boys were 4 and 2 years old, doctors diagnosed ALS with Rupesh Kotsi. Ronan and Keaton don’t remember him without the disease.

A few years ago, they began to take care of this by first wiping their father’s tears or propping his head up while traveling by car.

Then they started helping Panda move his father to bed and out of bed or to the toilet. They pull off his shorts and underwear, and she lifts him onto the seat.

They also put socks and shoes on him, help change shorts, grind medicine or mix mouthwash with water.

Panda, Mary Kay’s senior director of skin and cosmetics, has day and evening caregivers for her husband for the week. But she has no paid help either at night or on weekends, so the guys had to step up.

“Honestly, they do tasks that some adults don’t want to do,” Panda said.

Americans spend twice as much on health care as other rich countries, but we no longer use health care and are not healthy on average. So what exactly are we paying for? NBCLX narrator Peter Hull explains why health care in the U.S. is much more expensive than in other countries.

Panda is trying to balance the care of boys with activities that offer some normalcy. Kitan takes tennis and coding lessons. Ronan plays as a striker on the youth football team.

Soccer balls, frisbees and basketball balls lay scattered across the small suburban courtyard of Kotsi.

Both boys play the piano, and Kitan draws profusely. Stacks of his work fill the shelves in their playroom upstairs.

Ronan, who has written a short book about his father, views his father’s struggle with ALS as a battle of superheroes. He and his brother are among the many weapons.

Kitan sometimes shows his frustration, especially because his father requires care.

“He’s had a few accidents in the last few days,” Keaton said. “One day he went three times that day and I was really looking forward to doing something that day, but I couldn’t do it because … yes.”

After all, Panda views caring for boys as a positive. She hopes Ronan and Keaton will eventually look back and recognize how much they have gained by helping someone they love.

“If you’re caring for someone who … has a clock ticking, you don’t want to waste that time,” she said. “You can wipe away tears, wipe your mouth or hold your hand, these are some of the memories they will cherish.”

Guys know dads are getting worse.

Kitan says his father is finding it increasingly difficult to blink. He remembers one recent night when Rupesh slept for more than 12 hours and then took a long nap the next day.

“I think it’s worth worrying about?” he said.

Disappointment, devotion and grief swirl in their still-developing brains.

Therapist Sarah Satan recently asked the boys to make lists of things they want to do with their father.

Kitan shares his love of food with Rupesh, so he asked for a trip to Italy. The family has found a more practical alternative: to go to the Italian food market and restaurants in nearby Dallas.

Satan saw the boys regularly for several years. She tried to make them recognize and understand all the emotions that amaze them so that they don’t keep everything in bottles.

When they attend, she also tries to give them a fun activity that they can supervise. Play – children, being children – is crucial for development.

“We are acting out a conflict. We are playing the resolution. We play out the stories that take place inside us, ”says Satan.

During a recent visit, Satan releases the board game Candy Land. She tells the boys that each color card in the game will represent an emotion and they have to decide which one.

They then draw cards with the idea of ​​discussing any feeling.

Satan is also trying to encourage boys to talk about their father. They deviate, instead focusing on the painting on her wall. Then rises singer Rick Astley.

Kitan pretends to be a therapist. “Do you have a girlfriend?” He asks.

“No, you’re a terrible therapist,” Ronan replies.

Ronan only at one point admits that his dad is “doing well”.

In his game, Satan plays a double green. It means disgust or injustice.

“I think it’s unfair that terrible things are happening to people,” she said.

Guys avoid bait. They eat Hershey’s Kisses. They trade doodles on Etch A Sketch. Someone is farting. The session turns into bouts of giggles.

“You guys have been laughing like that all day?” Satan says. “Laughter without anger and fighting is so wonderful.”

When the session ends, Satan’s floor is covered with wrappers.

The boys head to a van waiting for their mother so they can return home and arrange a living room in the living room.

The panda began allowing Ronan and Kitan to unfold sleeping bags on the carpet in the living room every weekend during the pandemic. It started as a treat when they couldn’t go anywhere.

Rupesh began using a ventilator before the pandemic began. The boys stayed home from school for 17 months as Panda tried to keep everyone from getting infected with the virus.

She also has ulterior motives in allowing camps: if the boys sleep next to their parents ’bedroom rather than upstairs in their common room, it’s easier to call for their help.

The boys may have to get trash bags and gloves if their dad got into an accident at night.

Before setting up camp, the boys change into pajamas, and the family settles into the living room to watch the children’s show “Legends of the Hidden Temple”.

Ronan and Keaton curl up on the couch and love the seat, while Panda changes her husband’s shirt and pours medicine into his feeding tube. The fan is buzzing.

The show ends, and Keaton takes his turn to send Daddy back to the bedroom, where Panda lifts him onto the mattress.

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

Ronan then keeps his father on his side while Panda straightens her husband’s shirt and shorts.

After that, the boy quietly strokes the dad on his back and puts.

Panda finishes preparing her husband for sleep, and Ronan and Keaton run back to the living room.

There they stretch out on sleeping bags, chew on chips and candy, squeezing some more TV before crawling inside to fall asleep.


The Associated Press Department of Health and Science receives support from the Department of Science Education of the Howard Hughes Medical Institute. AP is fully responsible for all content.

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