BY JAMES FARRELL
Lesly Checo’s 3-year-old son, Elias, was born prematurely, has sensory and neurological issues, and is kept alive by a tracheal tube inside a hospital room at St. Mary’s Healthcare System for Children in Bayside. For a long time, he didn’t like to touch—or be touched by—anyone.
But Checo can remember one day when that started to change.
Elias was sitting in “the great room,” a room in the hospital where, twice a day, Elias goes to enjoy activities alongside other children receiving inpatient treatment at St. Mary’s. A girl was there playing the guitar and singing songs to the kids. Suddenly, Elias began reaching out to the child next to him.
“He’s just trying to touch his neighbor like, ‘Look!’—looking and eyeing everyone, but trying to get his neighbor to look at him,” Checo recalls.
According to Checo, music therapy has become one of Elias’ favorite outlets for interaction—and she believes that it has made a difference. Before, Elias was hesitant to grab anything. Now, the nurses and therapists in charge of the program give him bells so that he can participate. And it was that day in the great room when Checo realized how powerful that interaction could be.
“That was the biggest moment because children like him don’t really like to interact,” Checo said. “But at St. Mary’s, he has the ability to see kids like him. He doesn’t have the feeling of being alone. He’s seeing a bit of himself in another child.”
Ingrained in St. Mary’s vision for its children is a holistic approach—the idea that the healing process requires more than just medicine.
It’s a belief that a positive environment, happy children and a sense of social normalcy can help foster more effective development—and a more comfortable quality of life for children and their parents. To do that, the hospital staff works to include opportunities for socializing, activities and events that involve the surrounding Queens community as part of its everyday operations.
“These are the therapists teaching him not to be afraid—opening the space and letting him explore,” Checo said. “My son before he came here and my son now are two different kids. My son smiles and blinks his eyes and flirts and has all these facial expressions that he didn’t have before because he feels comfortable, because he feels loved.”
At the core of many of these efforts is St. Mary’s recreational therapy team. This group provides arts and crafts, activities and even trips out in the community that all aim to help youngsters feel like children. To do this effectively, therapists take an adaptive approach to their work, finding alternative ways for children to participate in any event, even if their disability or health situation would normally prohibit it, according to therapist Kristy McGregor.
Some children like Elias might be sensory defensive. When doing arts and crafts, the warm and sticky feeling of the paint could be unpleasant. So, the therapists will make their own paint out of yogurt—a cooler and smoother substance—and food coloring. That can be equally beneficial for children who may frequently put their hands in their mouth. Additionally, arts-and-crafts lovers may use an adaptive paintbrush that is easier to use if their health situation makes it difficult to wield a typical brush. The therapists also offer adaptive sports. Children who want to bowl but have difficultly lifting the ball may use a basketball, ramp or different size pins.
“Some of them get hard on themselves and say, ‘Oh, I can’t do it,’” McGregor said. “So, if we show them different ways that they can do it, then they are more apt to say, ‘Well, I can do this, even though I have a disability.’ It helps them to be happy and depression is lowered, and it allows them to be able to communicate and attend more things, instead of just being isolated in their rooms.”
She sees the benefit clearly in children who come in with traumatic brain injuries. These are often kids who might be dealing with newfound motor or sensory limitations.
“Now they have something that’s not allowing them to be what they thought was normal, so it’s kind of hard on them,” McGregor said. “Using these things and teaching them and educating them to know that there are adaptive ways, even though you may not be able to do it like everyone else is doing it, this is the way you’re able to it.”
Checo said that the therapists provide activities that are customized to each child’s abilities and sensibilities. This even includes making holiday crafts according to each child’s religious background.
Elias’ sensitivity to touch made him uncomfortable using paint with his hands. And so for recent holiday crafts, therapists took a different approach—they used his feet. The result was an Elias original—two Christmas reindeer whose heads were made from the artist’s footprints. It was much more enjoyable for Elias, Checo said, because he was more receptive to the tickling sensations on his feet.
Adaptive techniques are also a relief for parents, Checo said. Therapists give her tips on what kinds of toys will help motivate and entertain Elias.
“With the child life [instruction] and the therapy, I have the ability to know what it is that kids like him get to use,” Checo said.
But the efforts to create social normalcy for St. Mary’s kids also extend beyond the hospital walls. Every year, the hospital hosts several events that allow the kids ample opportunities to have fun with members of the community. The hospital hosts an annual community walk. Last year, it hosted its inaugural fall festival. This month, both the city’s Police and Fire departments came to the hospital to hand out gifts, dress up as popular characters and sing holiday songs. NYPD Commissioner James O’Neill even joined in on the fun.
“Especially the kids who live here, they don’t get to go out very often, if at all,” said Victoria Falcone, the manager of strategic partnerships at St. Mary’s who organizes most of these events. “Bringing the outside world to them and bringing the kinds of events that they would have if they went to a regular P.S. school, or if they had a church group, or if they were on a sports team. We try to think outside the box of different things that they would get if they didn’t live here.”
Falcone said that all of these events—in conjunction with the recreational and occupational therapists’ work—do more than just provide fun activities for children.
“We’re all about rehab and the ‘whole child,’” Falcone said. “You want to bring them positivity no matter what the circumstance, and that’s what these events do—it just brings a positive spirit and we’re a firm believer that a positive spirit will help heal the child even more.”
At the fall festival in October, children were able to dance, take part in face painting, eat cotton candy and decorate pumpkins. At the time, the Queens Tribune interviewed a child at St. Mary’s named Fernando Whitehead as he decorated a pumpkin. He talked about how the festival provided a much-appreciated break from his daily routine.
“You get to go outside and there are more things to do,” he said as he decorated his pumpkin.
His mother, Natalie, holding his half-eaten cotton candy behind him, concurred.
“The fact that he can come outside and do this, it’s different,” she said.
As for Checo, she believes that the therapists at St. Mary’s as well as the nurses and families are all on the same team, working to help their children develop as normally as possible.
“As a mom of a child with a disability, to see them succeed in the smallest aspect of life is heartwarming,” she said choking up. “You know when you wait for them to talk? I haven’t heard my son talk, but the fact that he went from non-interacting to a child who wants to interact—this child who wants you to look at him, who calls your attention, not only by the actual mobility of what he does with his face, but his hands wanting you, grasping you—was something new, something that I did not believe that I would see as a mom with a child with special needs.”
Reach James Farrell at (718) 357-7400 x 127, firstname.lastname@example.org or @farrellj329.