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Nurses at the John A. Coleman School in New York can see the difference a day at school makes for children who are severely disabled.

Most of the children they work with don’t speak, so cues are subtle — a smile or a wave or even a moment of eye contact. But the nurses have no doubt they are making a difference. It doesn’t matter that some of their patients may not get to live out their childhoods, they say. It’s their job — and their passion — to help make each day count.

The Coleman school, with campuses in Manhattan and White Plains, provides special education for more than 400 patients from birth to age 21.

Nurses at the Manhattan campus provide care for 110 of the in-house residents who come from the upper floors of Elizabeth Seton Pediatric Center to the school on the second floor.

The Seton center treats children with complex medical diagnoses that require ongoing medical and nursing care. Many of the children are on ventilators, use feeding tubes or oxygen tanks, or need suctioning for respiratory disorders.

Each morning nurses are waiting to welcome the children who are well enough to come to the classroom setting at 9 a.m. to start their five-hour day. One of the two permanent nurses who work in the school, Blanca Rodriguez, RN, supervisor of school nursing services, visits each classroom to make sure the children are physically ready to learn that day.

“First we transfer their oxygen from the small tanks they use in their beds to the big tanks they use at school,” says Rodriguez, who has been with the Coleman school six years. “Most of the children have had tracheostomies, or have feeding tubes or get at least 28% oxygen. We do their feedings and check their tubes, do tracheostomy care and suction if they need it.”

About 75 of the students have feeding tubes, so lunchtime is especially hectic for the two nurses, who can get help from the nurses working on the upper floors of the center.

Coleman school principal Sharon Herl says the school looks for nurses who have pediatric training and prefers acute care experience, since often the treatment the children receive is like what they would get in a hospital setting. If a child begins coughing or seizing or exhibits skin color or temperament changes, for instance, a nurse is immediately paged.

But Herl also looks for something else in a school nurse. “They definitely have to be someone who is able to adapt,” Herl says. “You have to be OK with things changing on a daily basis. A child can come in feeling fine and then things aren’t so great. We get a lot of visitors, too, and parents are in the classroom on a daily basis asking questions and they’re asking you why you’re doing a specific procedure. You have to be willing to work in front of people.

“You also have to be comfortable taking the children out into the community. Our nurses will do a suction anywhere — in a park, on a bus, in a museum. It doesn’t matter,” Herl says.

The school, which follows New York State Learning Standards, offers special education for infants and toddlers, preschool and school-age children, and conducts bedside instruction for children who are too medically fragile to come to the classroom. Children learn traditional subjects including math and science and life skills such as cooking. Teachers find ways to add tactile elements to help the children understand lessons, Herl says. If teachers are talking about temperatures in science class, for instance, the children will feel ice or put their hands into a bucket of warm water.

Technology also helps in the classroom. While students might not be able to pour an ingredient into a recipe, a machine might have a button they can press to do that for them.

Having easy access to a wide range of specialists at the Seton center helps make the experience at Coleman unique.

Darya Lemay, RN, talks of a patient who she says “came in as a scared little baby.” The patient was unable to communicate and put up her fists defensively “almost like a boxing position.” Now in her second year, after completing the Early Intervention program at the school and working with occupational therapists and speech therapists who taught her sign language and sounds, she is communicating “in her way,” Lemay says.

“Without the school she wouldn’t be doing half of what she’s doing now,” Lemay says.

Teamwork among children, parents, nurses, therapists, counselors, and administration is key to the success of the program. The multi-sensory curriculum, along with gym and music therapy, are tailored to the individual needs and abilities of each child. The mission is to replicate the experience the children would have in their home communities, Herl says.

Lemay says she has seen therapies and instruction work wonders on a member of her own family. That was one of the reasons she began her work at the Coleman school.

“It’s amazing what medicine can do these days. Kids who we hadn’t expected to live a long time because of their disabilities have exceeded our expectations,” Lemay says. “It’s all about quality of life. I’m not going to live forever either. You should never give up on anyone. Anyone.”

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Marcia Frellick is a freelance writer. To comment, e-mail editorNY@nursingspectrum.com.