By A.J. O'CONNELL

aoconnell@wiltonvillager.com

The toddler wasn't meeting child development benchmarks laid out by the family's pediatrician. She didn't settle down easily. And then there was the head banging, the hand flapping and the restlessness — one day Lily found that her daughter had scaled the kitchen furniture after her back was turned for just a moment.

"Why am I a bad mother," she wondered, "Why can't I control my child?"

Shortly thereafter, her daughter was diagnosed with autism.

You would never know it today. Her daughter is in a regular classroom in Wilton. None of her peers knows she has been diagnosed with autism. Not even she knows it. Because her family recognized autism early in her life and moved quickly to intervene, bringing in a team of private specialists, Lily's daughter won't grow up categorized as "autistic."

Lily, like many parents of children with autism in Wilton, became an expert on what her child needed. She hired a team of providers to work with her child, occupational therapists, physical therapists, speech and language therapy, experts in Applied Behavioral Analysis [ABA], and other areas. The Wilton Public Schools paid some of it for. Some was not.

Now, as the Wilton schools are trying to reduce reliance on outside consultants and use their own experts, parents like Lily are pointing to the success of their children's programs and wondering why the schools aren't making the same investments they've made.

"Our children all went into regular education. None of them went into special education," said Lauren, the mother of a child diagnosed at and early age with autism. As a toddler, her son wouldn't make eye contact with her. Now, with the help of a system called Relationship Development Intervention [RDI], he has friends and is a very empathetic little boy. Lauren is one of a group of Wilton parents whose children have reached what doctors all "best possible outcomes" with early intervention and outside specialists — like Lily's daughter, they are now in regular classes, and although some children still receive support services, those services are decreasing.

"My son has no IEP [individualized education program] anymore," said Donna, the mother of a son on the spectrum. "We stopped services before he was five."

"It's a diminishing rate of return," she said. Lauren, Lily and Donna contrasted the progress of their children with those who receive only the services provided by the Wilton schools. Those children, say the mothers, are likely to receive special services for the rest of their lives, which is expensive for the town and devastating to their families.

That's not a fair statement, say school special administration officials.

"We have seen many children, only using the school program, make significant progress," said Pauline Smith, assistant director of special services. "Their parents have been thrilled with their progress. We have a lot of success stories."

The three mothers all designed and footed most of the bill for their children's programs, although the district also pays for some of the services, they say they have to fight for funding for their children's specialists and they are upset that when the district's $45,800 autism report was designed, those specialists were not consulted.

Smith and director of special services Christine Chambers say they often differ with parents over bringing in outside experts.

The schools have planned for years to bring services like physical therapy, occupational therapy, speech therapy and ABA in-house, which the district planned to do several years ago to both save money and have those specialists as members of the school's team, said Smith. But there are also are certain methodologies the school will not pay for. RDI is one of those; so are other therapies requested by parents, like vision and auditory therapy. These reason the district won't offer these programs, said Smith, is that there isn't enough available research on the programs.

"We have a responsibility to provide a program that is science and research-based," she said. "We have to provide sound programs."

"The reason we do this is that it's federal law," said Chambers, citing the federal Individuals with Disabilities Education Act of 2004 [IDEA].

Dr. Nancy Schwartz of the Communication Clinic of Connecticut, a speech and language rehabilitation center in Ridgefield works with many children on the autism spectrum, where she uses RDI as one of her tools.

Although Schwartz warns that not all children with autism will have the same results as the children of Lily, Donna and Lauren, she feels it would be worth it to use RDI in their autism program.

"The schools more or less have methods that they have chosen and are resistant to changing that methodology," she said. Many schools take a behavioral approach, she said. That, many times, only treats some symptoms of autism, not the core deficiencies.

The schools say parents are free to supplement such services on their own. Superintendent Gary Richards says the schools are doing the best they can; they are required by law to provide a "free and appropriate" education for all students, but parents and schools often do differ on what "appropriate" means.

"Some parents go far beyond 'appropriate' to 'optimum'," he said.

Eve Kessler, a Wilton mother and a founder of the special education information group SPED*NET, has a teenage son who was diagnosed with autism as a small child. He was the first child to be diagnosed with autism in Wilton. Although his diagnosis turned out to be incorrect, she fought for the same kinds of programs Lily, Lauren and Donna are fighting for.

"It's one thing 10 years ago, to have difficulties when a school, and the country, is not used to taking kids with autism because it's new, " said Kessler, "but what these young women with these little kids are dealing with now is made all the more sad because it shouldn't be happening now."