NICIL smooths path for disabled local children

Philip Marruffo/Gazette Sarah Golden listens as another family discusses their son's situation during a meeting at the Northwest Illinois Center for Independent Living in Rock Falls. Golden came to the center several years ago to find help for her son, Donnie, who has Asperger Syndrome, a form of autism.

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Five-foot-one-inch Donnie Golden, 16, is a Prophetstown High School junior. His thin frame, boyish face and withdrawn demeanor gives the impression of someone much younger. Donnie has Asperger Syndrome, a form of autism in which people lack social skills and have trouble reading facial cues. The medications he has taken have stunted his growth.

Diagnosed when he was 8, Donnie was put into special education classes without the support he needed for his condition. He couldn't control his behavior, and became aggressive and disruptive, to the point where he wasn't going to be allowed back in school, said his mother, Sarah Golden.

In 2002, she and her husband, Cliff, went to Northwest Illinois Center for Independent Living in Rock Falls for help.

"We were having a lot of problems in school, and NICIL responded and helped us," Sarah Golden said.

The organization helped advocate for the family to get the services Donnie needed to carry out his individualized education plan in a homeschool setting. Now Donnie has his own special education aide at Prophetstown High, he's attending school half days and plans to go to full days, and academically, he's advanced to a third- and fourth-grade level.

NICIL advocates for and supports the disabled of Whiteside, Lee, Ogle, Carroll and Jo Daviess counties. It has more than 300 clients and last year answered questions from almost 5,000 people, Program Director Cilvia Rivera said.

Not only does it help schoolchildren with disabilities such as attention deficit hyperactivity disorder, autism and bipolar disorder receive the services to which they are entitled by federal law, it also helps disabled adults navigate the Medicaid maze, get Social Security benefits and deal with accessibility issues.

NICIL helps parents get individualized education plans for their students, then helps make sure those plans are followed. It advises people of their rights regarding accessibility and other issues - a lot of people don't know what accommodations are required, Rivera said.

"Our job is to do what's best for the child," Rivera said.

For instance, a NICIL representative comes to Donnie's education plan meeting every two months, Before she worked with NICIL, the meetings were once a year, Sarah Golden said. And meeting with principals, psychologists and teachers can be intimidating, she said.

"I couldn't do it without them," she said. "We wouldn't be where are today. I don't know if he'd be in school without NICIL."

Isaac Castillo is another NICIL success story. Isaac also has Asperger's, as well as oppositional defiance disorder. He's had an individualized educational plan since preschool, and now is a Rock Falls Middle School seventh-grader, going half days.

His mom, Rachel Castillo, was having difficulty getting her son back into a traditional school setting. Isaac's day needs to be completely structured, so he doesn't become disruptive, and meetings with Rock Falls District 13 were long and fruitless, she said.

About a year ago, she called NICIL, and the agency helped set up a plan for Isaac at the school.

"It helps to have a support system," she said. "Without NICIL, I'm sure we would be in the same spot we were."

The help from NICIL also has improved her relationship with school officials.

"We have good communication now," Castillo said. "Before, I would go when there was a really big blow up. Communication has really opened up. Every day, I know if it's been a good day or a rough day."

She will always be grateful for the agency and its free assistance, Castillo said. It taught her her rights, her son's rights and provided much-needed support, "just knowing you don't have to fight this battle alone," she said.

Reach Joseph Bustos at (815) 625-3600 or (800) 798-4085, ext. 529.

Reach Joseph Bustos at (815) 284-2222 or (800) 798-4085, ext. 529.