Program gives parents of special-needs kids a break – and helps train RI's future nurses

NARRAGANSETT – As Mister Rogers’ mother said, always “look for the helpers. You’ll always find people who are helping.”

That was the case on a foggy morning last week at Roger W. Wheeler State Beach, as two dozen nursing students hoisted beach tents, laid out blankets and set up a multitude of colorful sand toys in preparation for 14 special children to arrive.

The budding nurses, drawn from the University of Rhode Island and the Community College of Rhode Island, were participating in a URI program that provides respite care to special-needs children, in turn giving their parents a much-needed break – all free of charge.

The program is organized by URI College of Nursing clinical professor Christine McGrane, who specializes in pediatric nursing . Launched in 2023, the initiative was inspired by her Ph.D. dissertation examining the stress involved in special-needs parenting and whether respite eases at least some of that pressure.

"No big surprise: Parents carry a high level of stress," she said. "There was a stress reduction knowing their kids were being cared for."

What parents choose to do with the four precious hours is up to them. Some share quiet time with a spouse or one-on-one time with another child. Others opt to take a beach walk or dedicate time to self-care. Still others squeeze in housework.

"There’s no time off for special-needs parents," McGrane said. "There are so many needs. The system doesn’t fulfill the needs."

'I don't know if we would've gotten to the beach'

Becky Pacheco, a nursing director at Kent County Hospital with 10-year-old twins on the autism spectrum, opted to set up a beach chair in sight of her two girls, but just far enough away to relax and spend some quiet time scrolling through her phone.

"It is my first time at the beach with them this year," Pacheco said. With twins – who run the risk of eloping, otherwise known as quickly running off – a beach trip requires two adults. As a single mom, that’s an impossibility for Pacheco.

"I don’t know if we would've gotten to the beach this year," Pacheco said.

"Want to have some fun?" a student cooed as she led Pacheco’s daughter, Skyla Bliss, toward the water. Four or five students greeted the girls as they arrived. Skyla, who is diagnosed with high-functioning autism and attention deficit hyperactivity disorder, was soon splashing in the water, surrounded by attentive students.

It was a more difficult transition for her twin, Layla Bliss, who is nonverbal, has a sensory-processing disorder and is prone to putting things in her mouth. She clutched her hands to her ears initially, not used to the sound of the waves splashing onto the shoreline. Soon, Layla was digging a plastic shovel into the sand with other children as students looked on. They followed her if she wandered, gently guiding her back, and showing her how to use the waves to remove sand from her hands and feet.

Skyla made her first friend

Pacheco’s family has been participating in URI’s respite program since the spring. It is offered from noon to 4 p.m. each Saturday during the school year at the Department of Physical Therapy in Independence Square. The vast room is equipped with mats, exercise balls and swings.

"Sky met her first friend through the group," said Pacheco, who lives in Warwick and was referred to the program by a fellow Kent County nurse.

For Pacheco, those four hours provided her the chance to get Christmas shopping done.

"It is just good to have some time off on the weekend when you work all week. It just gives me a break," Pacheco said. She conceded she feels tense a lot of the time and is beset by worries about the twins’ placement for the coming school year.

Many groups require special-needs parents to be there or standing by for a (dreaded) phone call.

"It’s fantastic. It’s good for the nursing students to see kids with autism," Pacheco said.

When she studied and trained to be a nurse in 2009, autism really wasn’t on the radar, said Pacheco, who now sees adults with autism at the hospital.

"It’s not something we know a lot about," Pacheco said.

'If you need respite, you need respite'

The students, in the meantime, get to earn clinical hours toward their degrees for participating. About 50 to 60 students take part during the academic year, drawing from all the state’s nursing programs, with some attending just once and others frequently. Hundreds of students – including some from the physical therapy and human sciences departments – have participated, McGrane says.

"The perpetuation of students who need clinical hours keeps it going," McGrane said. "It’s a win-win for the students."

(The summer respite schedule – such as this week’s beach day – is sporadic.)

The children’s needs vary. Some have developmental delays or learning disabilities. Others are diagnosed with autism, Down syndrome or other neurological disorders. They range from children who need total care to those who are high-functioning.

No medical documentation is required to confirm a disability, McGrane said. "There are no disqualifications," she said. "If you need respite, you need respite.”

About 30 families participate "whenever they need it."

The program is paid for through a grant received by the Rhode Island Office of Healthy Aging from the U.S. Administration for Community Living Lifespan Respite Grant Program, which supports various respite services in Rhode Island. Among the grant recipients are the United Way of Rhode Island to host the Family Caregiver Alliance, and Catholic Social Services through its CareBreaks program, connecting caregivers to respite services.

URI’s respite program focuses solely on pediatric caregiving.

'It was really eye-opening'

Codie Corah, who is earning an associate’s degree in nursing at CCRI, was at Roger Wheeler beach, ready to greet the families as they entered. She participated in a respite session in June.

"It was really eye-opening what the parents go through every day," said Corah, 35.

She practiced de-escalation techniques , therapeutic exercises and the art of distraction.

"Some of them had very different needs than the others," Corah said.

"I actually had a really good time. It was fun to have someone who actually wanted to play with you," said Corah, a mother of five whose children range in age from 7 to 19.

Still, she admitted being exhausted at the end of the day.

"I ran all day. I needed a nap," said Corah, who also works in the emergency room at Westerly Hospital.

Corah observed, too, what the respite meant to the children and the parents.

"It’s really beneficial to parents to get that break," she said, and the children get exposed to the world outside their parents.

'We have a workforce of students'

At Roger Wheeler, McGrane waded out into the water to tell the students a little bit about each of the kids, including the risk of elopement.

"When I say you need to be with them all the time, you need to be by their side," McGrane said. "If they want to go in the water, you have to go in the water."

McGrane debriefs the students after each session about any challenges they encountered and the skills they used. They are asked to write reflections.

McGrane hopes to eventually secure a dedicated space for the program so one day it can offer overnight respite to parents.

"I think all parents of special needs children need overnight services. And we have a workforce of students," McGrane said.

As for the children, do they have a good time?

"They get so much attention, so much one-on-one time and sometimes it’s two [students] to one child" she said.

'There are a lot of people here doing good work'

Twelve-year-old Chloe Neal was having a blast in the waves surrounded by students at the beach after her mother, Lauren Neal, dropped her off.

Chloe is on the autism spectrum and has been looking forward to the beach trip for a month, her mother said.

"It’s difficult to find consistent help or a place where children on the spectrum fit in and truly feel comfortable," Lauren Neal said in a text. "Kids can be cruel.”

Adults, too, can be ill-equipped to meet the children where they’re at, trying to fit them into a cookie-cutter approach.

What did Lauren Neal do with her free time?

“I spent the rest of the day playing taxi for my 13-year-old. LOL,” she said.

The Flynn family has been having their children attend the program since the spring. Kayla and Jaimee Flynn have four children, including 3-year-old twins. Winston, 5, and Langston, 3, are on the autism spectrum. Rowan, about to turn 8, is diagnosed with ADHD, and Regan, 3, they described as the most “typical.”

“The first time we heard about it. We thought 'This is amazing,'" Kayla Flynn said.

While Regan hung close to her parents, Winston and Langston had joined the students in the sand. (Rowan was at day camp.)

“To take them to the beach ourselves would be a 20-minute thing,” Jaimee Flynn, of Cranston, said.

It’s hard to find babysitters or caretakers with the skills needed to keep special-needs children safe, they said. The nursing students are professional and skilled.

"We trust this," Kayla Flynn said of the program.

"There’s definitely a less level of anxiety," Jaimee Flynn added.

As a student tried to persuade Regan to join in the fun, dozens of students and children played in the waves, with smiles on their faces.

“There are a lot of people here doing good work, and not enough people know about it,” Jaimee Flynn said.

Parents of children with special needs interested in applying for the respite care program can contact McGrane at cmcgrane@uri.edu or 401-874-5347.

This article originally appeared on The Providence Journal: Program gives parents of special-needs kids a break – and helps train RI's future nurses