LEWISTON – Anthonie Iler sat on a blue pad a few feet from his special education teacher. She held up a bright orange ball so the 10-year-old could see it.

“Anthonie,” said Theresa Moran, trying to get him to look at her.

When he did, she said, “Here you go. Ready?”

She rolled the ball toward him. Anthonie picked it up and softly rolled it back.

“Nice job!” Moran cheered.

Anthonie is severely autistic, doesn’t talk and has the capabilities of a 15-month-old. He needs constant care.

With the right therapy and education, severely autistic children can learn to talk or communicate, skills that will help them as adults. The lessons involve intensive, repetitive, one-on-one education during childhood.

By law, all disabled children are entitled to a free and appropriate education from the municipality where they live.

Anthonie’s classes take place at Spring Harbor Hospital because he is not getting the services he needs in Lewiston, where the school system has failed to provide a program for him, his father says.

“They keep putting him on the back burner,” said Joel Iler. “Weeks and months go by. Still no offer of anything. Pretty much, they’ve told us to hang in there.”

Anthonie was home for months with nothing to do. When his behavior regressed, he was hospitalized at Spring Harbor.

Joel Iler said he first asked Lewiston officials for help last spring. In September he had to quit his job as a chef to care for Anthonie. It’s a financial struggle for the family to live on only his wife Rita’s income. “And personally, it’s a struggle emotionally,” he said. “I don’t see why they can deny this child the proper education.”

‘The law is clear’

The Disability Rights Center of Augusta agrees, and is working with the Ilers.

“Anthonie required services,” said Katrina Ringrose, an advocate of the Disability Rights Center. “The district had ample time to put those services together. They failed to do so. The law is clear.”

The center tries to resolve complaints informally with school departments. When that fails, the center turns to the courts, said the center’s lawyer, Diane Smith.

Melvin Curtis, director of Special Education for the Lewiston School Department, said he could not comment on Anthonie Iler’s specific case because of confidentiality laws. He acknowledged that Lewiston has a legal obligation to provide an education to every child. He insisted that the city does a good job in that area.

“The Lewiston School Department has a good reputation providing services for a whole variety of kids,” Curtis said. Of the 4,664 students in Lewiston schools, 860 – more than 18 percent – receive special services. Sixty-seven of those students get services from private agencies.

“Over the years there’s been no hesitation from the school board or community to meet the needs,” Curtis said.

Severely autistic children have a variety of difficult behaviors, Curtis said. “There are very few resources in this community, in the state, for dealing with severely autistic children.”

When the Lewiston School Department can’t meet the needs of a disabled child, Curtis said he seeks private agencies: the Margaret Murphy Center in Auburn, Merrymeeting Center for Child Development in Bath or Spurwink in Portland.

But those organizations have the right to refuse service to a child if the disability or behavior is too much for them to address, or if they lack staff, Curtis said. That could mean the city would have a hard time meeting the needs in those instances, Curtis said, adding that cases where no services are available are rare.

“It’s my responsibility to provide for all of the students identified as special needs,” Curtis said. “When we can’t put together resources to do that, it’s extremely frustrating.”

Behavior regressed

Anthonie’s recent troubles began last spring, when he was hospitalized for behavioral problems. He had attended the Margaret Murphy Center in Auburn, a special school for autistic children, for three and a half years.

At Margaret Murphy he learned communication skills through pictures and had occupational therapy to learn basic skills.

But when he began to vomit in school, he was sent to Spring Harbor. Doctors concluded he was throwing up to avoid doing tasks at school or to be sent home. The Margaret Murphy Center declined to re-admit Anthonie when he was released from Spring Harbor in September, his father said.

Michelle Hathaway, director of the Margaret Murphy Center, said she could not comment on specific cases. Sometimes the decision that a child needs residential care is a team decision, she said.

“Any time we have a referral, we look at the level of the child’s needs and whether or not we can meet those needs.”

When Iler learned his son would not be re-admitted, he contacted the Lewiston School Department. He was told there were no available services, that the school department was working on it.

“They told me to hang in there,” Iler said. At one point it looked like Anthonie would get help in Bath. That fell through when that program lost teachers. In October the Lewiston School Department began providing Anthonie with tutoring from 3:30 to 5 p.m. at Montello School. That lasted only a few weeks.

“They canceled that,” Iler said. He suspects special ed teachers weren’t prepared to work with a child so severely autistic. Meanwhile, Anthonie was home all day with his father.

His behavior regressed.

“Any time you have an autistic child, consistency is the key to them getting better,” Iler said. He needs to go to school and receive speech and occupational therapy, “not just sit in the house all the time.”

A Nov. 7 report by Dr. Carol Hubbard, a developmental behavioral pediatric in Falmouth who has treated Anthonie, said the boy returned to most of the behaviors for which he was hospitalized last spring. His vomiting behaviors increased. His sleep pattern became disrupted. He’d go to bed at night, then wake up between 1 and 3 in the morning. He returned to biting his hand when frustrated, Hubbard wrote.

He started grabbing things in stores, or grabbing people or pulling hair when he wanted to go out.

“He went backward,” his father said. “Not having a school or services is the worst-case scenario for this child.”

Hubbard and other professionals encouraged the family to seek legal action. For a school department not to provide an education plan is “highly unusual and irregular,” Hubbard wrote.

Curtis, of the Lewiston School Department, agreed that the city has an obligation. “It’s not OK to not provide services,” he said.

However, he disagreed that there was no plan.

“There almost never is no plan, but there are plans that aren’t able to be implemented. Nobody’s in a good position when that happens.”

The school department continues to look for a solution.

“When the normal resources are run through and exhausted and we don’t reach a conclusion, a school system doesn’t stop trying,” Curtis said.

Expressive personality

Spring Harbor is supposed to be short-term, but Anthonie won’t be discharged until services are available in his community, said Jean Roberts, program manager for children’s services.

Anthonie is kept busy there.

For every 50 seconds of class work – ball-rolling coordination, matching colors with cards, putting Care Bear puzzle pieces in place – he’s given one minute to do what he likes: stand on a stool and gaze out the window, watching cars drive by on a distant road.

On this day, he made a circle on his stomach, sign language indicating he was pleased with the scene. His teacher, his speech therapist and a behavioral technician laughed in delight.

Though he is nonverbal, staff said Anthonie has an expressive personality. During lessons he scowled, laughed. He said no by shaking his head.

Teacher Theresa Moran helped him put a puzzle together. Anthonie put the last piece in place himself.

“You got it! Perfect!” Moran said. “Hey, high five,” she said as their palms touched.