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Illness makes kindergarten a challenge for Hillsborough girl


Laura Tobia would like it if her whole bedroom were pink, not just the walls and chairs and throw rugs. • She wears a plastic princess tiara. She likes books, lately one about Snow White. "I'm going to kindergarten," she says. • That may or may not happen.

A rare cellular disorder makes it hard for 5-year-old Laura to walk without falling, or keep her energy up without eating and drinking all day long.

Her parents thought they had found the right public school for Laura and her brother, Easton.

Last week the word came down: Laura cannot attend Alafia Elementary School in Valrico.

In fact, her parents say the school district is not offering anything that will meet her needs.

• • •

The younger of two children, Laura was diagnosed at 3 with mitochondrial disorder, a condition familiar to Tampa Bay Rays fans because it affects former player Rocco Baldelli.

Essentially, food and water do not provide enough energy to the body's cells. For Laura, the results are weak muscle tone, poor motor skills and the need to eat and drink throughout the day.

Her family moved from Kentucky to Florida a year ago, largely for the climate. Laura's mother, Marla, is a neonatal nurse practitioner. Her father, Scott, works from home, running an Internet domain business.

They said they found their neighborhood school, Ruskin's Cypress Creek Elementary, unsuitable for Easton, who is gifted. So they sent him to a private school for third grade.

When spring came, they began exploring their options. For Laura, school officials recommended Reddick Elementary in Wimauma, which has support for children with special needs.

But because Laura has a full schedule of physical, occupational and speech therapy that would take her out of school a great deal, they wanted a school closer to her Brandon-based therapists.

Through the choice program, they selected three schools in Brandon for both children. After a round of calls and e-mails, they thought they had seats for both at Alafia.

But shortly after they visited the school to enroll the children, officials said that because of the extent of Laura's disabilities, they could not accommodate her.

"Alafia Elementary is not a site that can appropriately implement your child's individual educational plan," says an Aug. 15 letter from the exceptional student education supervisor.

In the shuffle, the Tobias said, Easton lost his place at Alafia. They do not know where he will go when school starts Tuesday.

Several offers

The educational plan, commonly known as an IEP, is prepared by a team of teachers and specialists. Laura's describes her condition, developmental delays and past hospitalizations.

The district offered spots in several schools that are better equipped to support physically impaired children, according to the family's documents.

But the Tobias said they were told none of the schools will give Laura a full-time classroom aide. Without one, they said, she risks being injured in a fall or embarrassed if it takes too long to get her to the bathroom.

"When she goes to lunch, say they have spaghetti for lunch, she can't eat that whole spaghetti, somebody has to cut it up for her," Scott said. "She just doesn't have that dexterity."

School officials could not discuss the case, citing privacy laws. Speaking in general, spokeswoman Linda Cobbe said it is not unheard of to assign a full-time aide to a disabled child.

But for that to happen, she said, the educational plan must document the need. Laura's does not. Scott said when he tried to have it included, he was told such an assessment would happen after Laura began attending school.

At one point, the couple considered waiting a year. But they were told that intellectually, Laura seemed ready for school.

"She knows words like astronaut, she can tell the difference between a package and a letter," Scott said. "Her ability and her mental capacity is not an issue at all."

Marla Tobia contends the couple and the district owe it to Laura to give her every academic advantage.

"She's never going to be an athlete, she's never going to be a prima ballerina," Marla said. "Her brain is what she's got and she is going to have to have a good education."

She makes no apology for wanting a school convenient to Laura's therapy sites. "Her only hope is to build muscle mass as a child through therapy. The more strength she can build, the more control she can have. So therapy is essential."

The Tobias do not know what their next step will be. The state has made it easier for disabled students to use McKay scholarships for private school.

But the Tobias do not know if Laura qualifies, as she has never gone to public school. They also don't know if they can find a private school to accommodate her, given how rare her condition is.

Already, they said, one school politely turned them away.

"Our understanding is, she should get a free education, which everybody is entitled to," Scott Tobia said. "And she has the right to be safe."

Illness makes kindergarten a challenge for Hillsborough girl 08/17/11 [Last modified: Wednesday, August 17, 2011 11:08pm]
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