By Hugh Fisher
hfisher@salisburypost.com
Jacob Riley Usher is an endearing 3-year-old, with honest eyes and a smile that can make your day.
“He’s precious,” said Ashley Mauney, his assistant teacher.
Mauney was in charge of the class Friday afternoon.
Jacob’s classmates at Partners In Learning, the Salisbury child care center he’s attended since he was a baby, had a party for him, wishing him luck.
He’s going to be away from his class for a while.
The adults in the room are smiling, staying positive, but they are concerned.
And they are praying because Jacob will have heart surgery Tuesday at Brenner Children’s Hospital in Winston-Salem.
Jacob was born with Down syndrome, a genetic condition caused when someone has 47 chromosomes instead of the usual 46.
Today is World Down Syndrome Day — a day on which families and health professionals try to raise awareness of how people with this disorder can be better educated and cared for.
Children with Down syndrome learn more slowly and are slower to start talking, walking and doing other things on their own.
Many also have muscular and heart problems.
Jacob has a hole in his heart and a malfunctioning heart valve, which the doctors at Brenner will repair using a donor heart valve and a complex technique.
To see Jacob in the classroom, though, you would be hard-pressed to know Jacob was any different from the rest of the children.
And that’s exactly how it ought to be.
“He never ceases to amaze me,” said Linda Smith Hawkins, Jacob’s grandmother.
She and husband, Tommy, have raised Jacob and his two siblings since 2008.
They give Partners In Learning credit for the strides he has made.
“He is so determined and he will try and try again until he accomplishes what he sets out to do,” she said.
“I strongly feel this is due in part to being (at Partners In Learning) around other children and learning from them.”
Children with Down syndrome and other disabilities are included in the same classrooms as typical children.
“These children don’t see Jacob as being different,” Hawkins said. “He is just one of them.”
Numerous agencies in Rowan County help provide therapy and other opportunities, Rowan Vocational Opportunities and Smart Start Rowan among them.
Norma Honeycutt, executive director of Partners In Learning, said that educators, doctors and therapists have made great strides in helping people of all ages with Down syndrome find a place in the community.
Honeycutt said it is awful to think that a century ago children with Down syndrome would have been institutionalized for life.
Decades ago, those children were segregated into separate classrooms at school.
Today, the philosophy of inclusion is creating new opportunities for both typical children and those with Down syndrome and other learning and developmental disabilities.
“The benefits for children with special needs are that it pushes them,” she said — encouraging them to model their behavior after other children.
“For the typical children, it breaks down the barriers and stereotyping,” she said. “The earlier, the better.”
She said that children who learn to be encouraging and accepting of people with disabilities early in life carry those positive qualities throughout their lives.
That was certainly the case in Jacob’s classroom Friday.
The other 14 kids in his class shared cupcakes and juice pouches, talked and played and thanked him for the treats his grandparents had brought.
It was just another day for them. And Jacob was in the middle of it all, walking around, hugging his grandmother shyly one moment, sitting on Mauney’s lap to read a storybook the next.
But, Honeycutt said, there’s still a lot to be overcome in the world outside their playground and classrooms.
First of all, those stereotypes that young kids at Partners In Learning may never learn are still out there among other children and adults.
Left unchecked, they lead to bullying and harassment.
Honeycutt said language has power in this situation. The children without disabilities aren’t “normal” kids. They are “typical children.”
And Deborah Howell, assistant director of Partners In Learning, gets angry when she hears a person describe something, or someone, as “retarded.”
“That word is not used in my house,” Howell said. “It shouldn’t be used anywhere.”
For parents of children with Down syndrome, Howell said, learning about their baby’s condition is easier than with some types of disabilities.
There are clear signs of the condition at birth, enabling them to get help right away.
But beyond understanding the medical challenges lies the challenge of raising that child in the years ahead.
Howell said many child care centers aren’t equipped to deal with kids who, at age 4 or 5, still require the care given to toddlers.
“There are a variety of challenges,” said Katherine Generaux, community inclusion director.
Her job is to work with organizations in the community to train teachers and caregivers, helping them give kids with disabilities the support they need.
“Some facilities are better equipped, and their personnel are better trained,” Generaux said.
Some child care centers say they simply can’t take on children with Down syndrome, Howell said.
“They walk later. They talk later. They’re potty trained later,” Howell said.
Generaux goes into the community to try to develop strategies for including children with disabilities, for making those care and educational options available.
Honeycutt said Partners In Learning provides avenues to a lot of the services that kids with disabilities might need.
Down the hall from her office, kids’ books line shelves in the center’s library.
Also on those shelves are books and resources for parents and caregivers, including books on Down syndrome.
“We’ll do whatever it takes to be able to meet a child’s needs,” she said.
But it takes time to help parents faced with these needs to adjust.
And there are still challenges in getting some caregivers and educators to adopt inclusive strategies.
“It’s the facilities and, I’ve got to say it, the attitudes,” Honeycutt said.
“It is the attitude of ‘We can make this work’ versus the attitude of ‘I don’t need the extra work,’ ” she said.
Beyond that, there is another serious challenge faced by Partners In Learning and similar agencies: funding.
It takes money to train teachers, money to provide equipment like changing tables, money to hire and retain therapists.
“Some of the Smart Start money we get covers teacher salaries and benefits,” Honeycutt said.
And teachers are not well paid compared to other professions, and they work long hours. Fewer teachers would mean less assistance in developing ways to keep kids like Jacob in regular classrooms, and less help giving teachers the support they need to make that work.
“We try to level the playing ground,” Honeycutt said. “We want them to get the best possible care.”
But the economy is just another factor making that harder to do.
Still, Honeycutt said, helping children with Down syndrome at an early age is a necessity.“Remediation (later in life) is valuable, but by then they’ve lost their potential,” Honeycutt said.
Not just the potential to learn more quickly, but perhaps even the potential for kids like Jacob to be able to go further in education, to have a job, to be self-sufficient.
And that’s a big concern for Linda and Tommy Hawkins.
Outside of the classroom where Jacob is celebrating his good-luck party, his grandmother said she knows she won’t always be there for him.
“He’s wonderful,” she said. “He’s grown so much, he’s come so far.”
Contact Hugh Fisher via the editor’s desk at 704-797-4244.