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Meeting life’s challenges

Grace Karpa

This is the second and final story about special needs children and their education in Nevada County. For the first story, see Tuesday’s edition of The Union, on our Web site at http://www.theunion.com.

Education is just one of many challenges for families with special needs children.

“The process of grief that parents go through is big and it’s ongoing,” said Susan Craig, a special education psychologist at Champion Mine Family Resource Center. “It doesn’t end with ‘Gee, I have a handicapped child.’ It happens whenever a child can’t do something other kids can do. It’s over and over and over again.”

Parents of special needs children have to figure out where to get services on top of that, she noted. “It’s overwhelming,” Craig said.

Some parents are alerted before birth that they will have a special needs child, as in the case of Joe Payne, a boy with Down syndrome whose parents enrolled him in the center’s programs before he was born.

“We wanted to celebrate his birth and honor that,” his mother Martha Payne said.

Others care for children with particularly debilitating disabilities, like the four children Janet Oswald and her sister, Nancy Jensen, inherited when they bought a home for medically fragile children in October.

“It’s our niche,” Oswald said.

All four children are wheelchair-bound, and travel to special education classes in small yellow buses. Three have Cerebral Palsy, one has an x chromosome disorder.

Just like many working mothers, Oswald lays out four sets of children’s clothes for the next school day at night. “We’re up at 6 a.m.,” she said.

The first school bus arrives at 6:55 a.m to pick up two children. The bus for the second two children arrives at 7:45 a.m. “so there’s some time in between there,” Oswald said.

Brian Beck, 14, goes to Nevada Union. Brooke Sanysidro, 13, goes to Union Hill. Phillip Sarvis, 11, attends Seven Hills. Shellby Thumel, 7, attends Gold Run School.

Oswald worked for the previous owners of the three-bedroom, two-bath home with a rec room, “with the children’s toys, the TV and my desk” in the basement.

“She kept saying that I was a natural ,” Oswald said about the previous owner. “And I enjoyed my work.”

To help with nutrition, three nurses come to the LaBarr Meadows home because the youngsters are fed through G-tubes, which were developed only about 30 years ago, she said. Shellby can chew small amounts of food in her mouth but, “can’t enough nutrition that way,” Oswald said.

“They don’t eat by mouth but are fed through a hole made in their stomach with a tube that comes out of their skin,” Oswald explained matter-of-factly. “We hook them up to a tube and give a PediaSure supplement.”

The children are in diapers and have to be monitored closely for medical reasons. Brian also has diabetes.

Two of the nurses are from Pediatric Services of America and paid for by Medicare, Oswald said. The sisters hired the third nurse on their own.

“When we’re at an appointment, we need someone here to greet the children when they get off the bus,” Oswald said about hiring another nurse.

“It’s an ordeal,” Oswald said about meals.

Both of Brian Beck’s parents are dead, but he has an aunt in Pennsylvania and his grandparents call, Oswald said. Child Protective Services of Sacramento County placed Brian in the Oswald Family Home.

The other children’s parents have placed them here “for whatever reasons,” Oswald said.

“Brooke’s parents are very much in her life and she spends weekends with her family,” Oswald said. Shellby’s dad and stepmom live in Sacramento and are “somewhat in her life,” Oswald said. Phillip has two sisters.

“I’m giving back. I love ’em all,” Oswald said. “They didn’t choose to be that way and someone has to help them and that’s me and my sister.”

Regardless of a child’s abilities, special education came from a federal mandate, the Individuals with Disabilities Education Act in the late 1970s, said Susan Clarabut, assistant superintendent for special education. Clarabut, who earned a special education credential in the early 1980s, said that the act “becomes our Bible that we live by.”

“There was a time in our history when kids were warehoused,” Clarabut said.

The goal for children with special needs is that they remain, when at all possible, in their neighborhood schools, Clarabut said.

That’s why the Nevada County Office of Education runs programs in 10 classrooms throughout the county for children with moderate to severe disabilities; one each at Gold Run, Deer Creek, Seven Hills, Hennessy, Scotten and Lyman Gilmore, two classes at Union Hill School, and two preschools at Champion Mine Family Resource Center.

In a classroom adapted for special needs children at Deer Creek School, 10-year-old Justin Johnson opens up his green binder and proceeds to show a visitor 322 illustrated pages of a story.

Handsome and engaging, Justin is happiest when he’s showing what he likes to do best, conceiving and executing plots with drawings, Craig said.

“He’s obsessed with it,” Allison Carter, Justin’s teacher, said about Justin’s illustrated book and plans for more.

Justin isn’t in a mainstream classroom because he’s autistic, a mild disability.

“His mind is always going,” Justin’s step-father, Michael Johnson, said about him. “His mind has been good when his mind is going on something productive.”

Johnson, the county’s special education teacher at Hennessy School, also teaches seven students – a kindergartner, four first-graders and two second-graders – who are autistic or who have delays in speech and language. “It’s not good when he’s not engaged in something productive,” Johnson said.

Justin says he plans to write a series of 40 books.

“We’re always talking about moving kids put into the least restrictive environment we can,” Clarabut said.

About 10 percent of the population has a special need of one sort or another, like speech therapy or adaptive physical education, Clarabut noted.

“Lots and lots of kids have special education and you would never even guess it,” said Clarabut.

Years ago in Nevada County services for special needs children were provided at the fairgrounds, Clarabut said.

“There was certainly no place to mainstream there,” she said. “Now our classrooms are on regular education sites, and they’re all grade-appropriate. We want to keep kids with their peers as much as possible.

“We always hope we get kids sooner rather than later,” Clarabut said. “We can make a bigger impact the earlier the intervention.”

Going Public

How families of special needs children are treated in public “depends on the handicap,” Craig said.

Autistic children don’t appear to have a handicap, so people can be more judgmental than understanding when an autistic child becomes impatient and out of control, Craig said.

“Parents often face the reaction ‘If only you’d get your kid under control,’ ” Craig said. “They don’t understand the child has a handicap because they don’t look like they do.”

But Down’s syndrome children are “fairly well received,” Craig said. “They’re cute.”

“People cozy up to,” Janet Oswald’s wheelchair-bound children “after you talk to them,” she said. “Most people are very loving toward the children but then there are people who are leery of them. It just depends on the people,” she said. “They’re so lovable you can’t help but fall in love with them.”

For example, Brian has behavioral problems and is on medication, and “once you say ‘he won’t hurt you,'” people are friendly, Oswald said.

Oswald hopes to get her kids out more and has, “a gentleman out looking for a 12-passenger van for us.” She and her sister hope to convert the van with a wheelchair lift, Oswald said.

“We’ll ask the state if they’ll help at all,” Oswald said about the possible $3,000 cost.

Like Oswald, Susan Clarabut, the county’s special education chief, calls providing services to special needs children, “very rewarding.”

“You’re working with students who you know need that special help you’re providing,” Clarabut said. “Sometimes it can make a huge difference.”

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