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The LeVasseurs (from left): Sarah, Cathy, Paul and Chris

Cathy and Paul LeVasseur thought Fairfield Public Schools understood: Their son Chris was out sick with Lyme disease and wouldn’t be back to school until he was better.

Though he was a bright kid who sailed his way through the Six to Six Magnet School, Chris’ first year at Tomlinson Middle School had been derailed. The seventh-grader came down with a sore throat and fever in September 2008 and was bedridden with joint and muscle pain by the end of October. He also developed serious cognitive problems, his parents say. He could no longer remember the names of household objects. He pointed at them and then huffed in frustration. Fairfield Public Schools sent a tutor to the LeVasseurs’ home, but she was dismissed after Chris banged his head on the table in anguish during lessons.

Cathy LeVasseur says she excused all of his absences. She exchanged e-mails regularly with Chris’ guidance counselor. She met with a “team,” a cluster of school officials put together to guide the education of a child in need of long-term special ed accommodations.

Everyone was on the same page, she assumed.

Cathy was shocked, she says, when she got a call from school social worker Vanessa Costanzo last April, saying she had reported the LeVasseurs to the Department of Children and Families for the suspected “educational neglect” of Chris.

“It felt like such an about-face from the last time I had talked to [school officials],” Cathy says. “I couldn’t believe this was happening.”

She’s not the only parent in Fairfield who’s had that feeling. This sort of thing happens at least enough to make it to the desk of State Rep. Kim Fawcett (D-Fairfield). Fawcett says four other sets of parents have contacted her about being reported to DCF by officials in Fairfield Public Schools. In each case, the child was sick, the school said he or she was truant, and the parents said they were baffled.

Just eight weeks prior to the call from Costanzo, Cathy LeVasseur went to Tomlinson to attend the first meeting of the “team” — a special education coordinator, social worker, teacher, principal, guidance counselor and Cathy herself. And she remembers the meeting as mostly amiable. There was one point of contention: They wanted Chris to be evaluated by a school-appointed physician and psychologist immediately. Cathy wanted Chris to first finish his current round of testing with a neurologist in Norwalk.

We don’t know that doctor, Cathy recalls Secondary Special Education Coordinator Barbara Giaquinto saying. The school wanted Chris seen by their people, and they wanted Cathy to sign off on it, and she did.

But she revoked that permission the next day, she says. She and her husband decided they wanted to wait until after some other doctors’ appointments. There was an upcoming MRI with the neurologist in Norwalk, and the LeVasseurs were taking Chris to see some of the Lyme specialists members of their support groups had recommended. Chris barely had enough energy to get out of bed some days. Too many interviews, memory tests and doctoral poking and prodding would wear him out.

On Feb. 4, Cathy told the school they were going to wait until his other tests were done before the school’s medical officials could see her son.

On March 26, Costanzo reported the LeVasseurs to DCF, the state’s main child welfare agency, on suspicion of educational neglect. The reason on the report: Chris had been absent for 106 days. The report also noted the LeVasseurs dismissed the tutor and refused to let the school’s people test Chris.

In early April, Costanzo made the call to Cathy LeVasseurs. She called it a “courtesy call,” Cathy remembers, “as if it were some special favor to let me know they had done this.”

“This is something we did not expect and were not prepared for,” says Paul LeVasseur. “On top of everything else we were doing for Chris, we now had to get prepared for the DCF investigation.”

Cathy works as a receptionist at a health spa and Paul works at Bridgeport Hospital, overseeing the ecological efficiency of the hospital’s cleaning, but Cathy has a degree in early childhood education and the two hold theater and stress reduction workshops for teens during the summer. If word got around…

On a form to the authorities, Costanzo had checked a box marked “HABITUALLY TRUANT (Twenty (20) unexcused absences in a school year)” (underlining in the original). The LeVassuers say all of Chris’ absences were excused and the school had notes from his doctors.

And even if the LeVassuers hadn’t followed exact protocol, e-mails between Cathy LeVasseur and Chris’ guidance counselor show the school knew why Chris was out and knew about his parents’ laborious efforts to get him ready to come back. Why would the school think they were neglecting their son?

The DCF investigation was short. In April, an agent came to their home, did interviews with Cathy, Paul and Chris, and sent a letter four weeks later stating the allegations were without substance.

The LeVasseurs went on to a long summer of testing and treatment from their own team of “Lyme-literate doctors.” Chris never saw the school’s examiners.

*

Rep. Fawcett intends to talk to Fairfield Public Schools administrators about their DCF reportage. “I think it may not be clear to them when they are supposed to call DCF,” she says. “I think we need better guidelines.”

Another parent, whom we’ll call Ralph, had two children with Lyme in the district. The school called DCF on Ralph and his wife over both kids. Ralph does not want us to use his name because he still has family involved with Fairfield Public Schools.

Ralph’s eldest became sick in middle school. When planning for high school, meetings became more and more explosive until he and his wife couldn’t meet with their “team” without an armful of school officials, a state-appointed mediator and Ralph’s own attorney in the room, he says.

A few hours after one of these meetings, a pair of DCF agents knocked on Ralph’s door. School administrators “were smiling at us while we were there and then called DCF as soon as we left,” Ralph says. The DCF agents separated the family. They asked the children if their parents ever fought and asked Ralph and his wife if they ever abused drugs or alcohol. Were there any barbiturates in the house right now?

The investigation was more intense than the one the LeVasseurs had to stomach, but the end result was the same: The parents were cleared of any wrongdoing by DCF. Ralph says an agent later told him the school “had some concerns” over the medical treatment his child was receiving.

When their second child became sick, Ralph and his wife simply pulled the kid out of the school district. The school called DCF on them again, but this time Ralph deflected them with a lawyer before any investigation took place.

It’s a tactic, says attorney Deborah Stevenson, executive director of the National Home Education Legal Defense. “There are a lot of cases with diseases where the family and the school district disagree and the school tries to rein in the parent by calling DCF … DCF is essentially used as extra muscle by the school.”

The reasons vary, says Stevenson, but in most cases, “the school thinks they have an obligation to make the child go to school.” A need to control the child is built into the culture of the school.

In other cases, the school may legitimately worry about child’s medical treatment. “It can be a battle between the parent and the school over what constitutes good medicine,” says Stevenson.

Lyme, a disease with a nearly endless multitude of symptoms, presents a particular problem. There are no universally agreed-upon guidelines for how it’s treated. The controversy could swallow up several paragraphs, but to sum it up briefly: The Infectious Disease Society of America contents there is no such thing as chronic Lyme. Four weeks of antibiotics is all the treatment anyone should need, by IDSA guidelines. In that doesn’t do the trick, you must be suffering from something else. The insurance industry likes this line of thinking because it lets them off the hook for more extensive treatment. A growing number of patients, parents and “Lyme-literate” doctors say that Lyme is a chronic and distinct disease and those who say it isn’t are dangerously suppressing information. The recently-passed Connecticut House Bill 6200 extends protection from malpractice suits for doctors treating long-term Lyme, but the battle over a consensus about Lyme and how to treat it continues.

It makes things confusing, at the very least, to school districts.

“If the IDSA has a bias against Lyme,” says Maggie Shaw, a registered nurse and longtime Lyme activist, “then that will be reflected in our government agencies.”

*

When asked to discuss this story, Fairfield Public Schools officials didn’t want to. “We are not having this discussion,” Superintendent Ann Clark said flatly. Clark, Tomlinson Principal Connee Dawson and Director of Special Education Andrea Leonardi would not say a single word about the LeVasseurs or their claims. They cited confidentiality.

Clark refused to discuss the district’s standard about when to report a child to DCF. “Anything I say could imply something about [the LeVasseur] case,” she said.

She did e-mail us a few pages from the Board of Education’s Policy Guide. The section doesn’t say how many days of absence constitute “educational neglect” or even include the phrase “educational neglect.”

Out of all the school officials we contacted, Leonardi talked for the longest. She noted all school officials are “mandated reporters,” required by state law to report any suspicion of abuse or neglect to DCF.

“Any number of things” could warrant a call, Leonardi says. She repeatedly said it differs with “each individual.”

There’s no limit to the number of things that could cause suspicion and there is no suspicion so small it should be brushed aside — and, Leonardi says, it should be that way for the benefit of the kids.

“It’s not easy for us,” Leonardi says. “It’s no small matter when you are talking about the welfare of a child. But as a parent, I would want the school not to overlook any possible case of abuse or neglect.”

She adds it’s DCF’s responsibility, not the school’s, to investigate a school official’s suspicion. They shouldn’t sit around and worry about how creditable their claim is; that’s DCF’s job.

Also, school officials don’t have to confer with each other. Vanessa Costanzo, the social worker who reported the LeVasseurs, may have made the decision to call without any order from her superiors. Constanzo did not return our calls or e-mails.

DCF Spokesperson Gary Kleeblatt emphasizes that any parent reported to the agency is treated with kid gloves. It’s very rare a parent would be charged with a crime or be separated from the child. (Calls that dire usually go to the local police.) In a vast majority of the 24,000 reports CDF received in the last year, “reconciliation between the parent and child is the goal,” Kleeblatt says.

For parents who feel that they’ve been wronged by this process, there is little recourse. Technically, false reporting to DCF is a crime, but John C. Smriga, State’s Attorney for the judicial district covering Fairfield, says those cases are rarely prosecuted.

“You would have to prove that someone reported with malicious intent,” says Smriga. “It’s not a crime if the reporter made a mistake.”

But still, how does a parent who has done no wrong trust a system that alleged they neglecting their child?

*

Chris LeVasseur has not made it back to Tomlinson this year. Cathy religiously calls the school every morning to say his absence has been excused.

He understands what happened between his parents and his school. “They didn’t know how bad I was feeling,” Chris says. “They just wanted to get me back to school.”

Chris sits in the Starbucks on Post Road, a hangout spot close enough to his house for regular visits. He doesn’t seem frail, just very tired. He sits more stilly and tranquilly than a 12-year-old should. He doesn’t ever seem to fidget.

Cathy considered homeschooling him (she does have that degree in early childhood education), but she and Paul decided it was important for him to be with other kids. They want him to go back to Tomlinson when he’s ready.

“We’ll probably have to get a lawyer,” says Paul LeVasseur. “You shouldn’t have to hire a lawyer to just to get your child the education he’s entitled to.”

Chris’ vocabulary has come back to him. He’s able to come up with similes. He says he feels like “a ship lost in the fog.” He doesn’t feel alone; he says he’s surrounded by other ships — his friends, his parents, his siblings — but it’s just he who can’t pierce through the fog. Fairfield Public Schools was just a very big ship, one that perhaps didn’t think about the size of its wake.

 [Note: The print version of this story included a typo in the subheadline.]