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Frustrated parents of autistic children create a center to meet complex needs. "Every day your kid is in school is a struggle," one parent says.
By S.I. Rosenbaum, Times Staff Writer
Published February 22, 2008
[Skip O'Rourke | Times]
RIVERVIEW - The parents all have war stories.
Tina Frerichs talks about the day her daughter had a seizure and fell down a staircase at a school that should have had ramps.
Geeta Sue-Wah-Sing remembers a school official who promised her son five hours of speech therapy a week and only delivered 20 minutes.
Practically every member of the Concerned Parents of Autistic Children can tell a story like this.
"Every day your kid is in school is a struggle," Sue-Wah-Sing said. "After a while you have to choose: Do I want to take on the school district, or do I want to take care of my child?"
So Sue-Wah-Sing, Frerichs and others have banded together to start their own school for autistic children in a leased house on a residential street in Riverview.
"This is born out of need," said Frerichs. "You realize you can't depend on anyone else. We just have to grab the reins and go."
Over the past year, the parents secured a long-term lease on the house, fixed it up and raised money.
They say the school is now only one fire marshal's inspection away from opening - even though, technically, it's not a school, but more of a "glorified day care center," said board member Dr. Housam Moursi.
"We're doing this by the seat of our pants," Moursi said.
For autistic kids, the line between therapy and education is a thin one. Autism is a brain development disorder marked by problems with social behavior and speech, so education can be therapy, and vice versa.
No one understands what causes autism. There are dozens of competing treatments - some supported by science, some pure quackery. Sometimes, it can be hard to tell the difference.
Moreover, because of individual differences, a therapy that works for one might be useless to another. So parents of children with autism often find themselves plunged into a maze of possible cures.
Moursi, of Valrico, has tried plenty. He put his son on vitamin supplements and special diets, had him chelated to remove mercury, and even bought a hyperbaric chamber to provide more oxygen to the child's brain.
"I love my son," he said. "I'm trying to make him reach his potential."
Moursi's son, Jacob, was diagnosed at 3 years old. He's 6 now, a clear-eyed boy with his mother's snub nose and his father's Egyptian complexion.
Moursi founded the Concerned Parents of Autistic Children almost by accident after Jacob's diagnosis, when he started to run into parents of other autistic kids at the emergency room where he worked.
Once the parents started meeting in the back room of a health food store, they realized how many experiences they had in common.
"So many people are going through the same things," Frerichs recalled. "School Board issues, insurance issues, therapist issues."
The idea of opening a school of their own came up almost immediately; no one remembers who said it first.
But it has only been in the last year that the parents have organized behind the project, forming a board of directors and naming Frerichs administrator.
Of course, you can't just open a school; it's more complicated than that.
"You can't really technically call it a school," Moursi said. "There are more hoops to jump through for a school. We could spend two more years fighting bureaucrats to get all that stuff, but we'd never get started."
Instead, the parents chose to incorporate as a care center, which is a much simpler process.
"We want to open up," Moursi said. "Sometimes it's important to get the ball rolling."
After a few years, Moursi said, they'll be able to show their students' progress, which he hopes will open the door to becoming a real school in the eyes of the county and the state.
"Build it and it will come," he said. "The school system will be inundated with autistic kids. They'll say, 'Try it.'"
The children who will attend the school - about 10 of them at first, Sue-Wah-Sing said - will probably already be getting their education at home.
Under state law, if a disabled child's needs can't be met by a public school, their parents can apply for a McCay Scholarship to attend a private school.
The scholarship doesn't cover homeschooling. That presents another dilemma for parents who can't find an appropriate private school: send the child back to the public school or take on the expensive task of hiring therapists for homeschooling.
The Moursis pay a Sarasota nonprofit group $3,000 a month to provide a form of therapy called applied behavior analysis, a treatment based on repetition and rewards, in their home.
"It breaks everything down into little tiny steps for them so they can comprehend it," said Moursi's wife, Dawn. "When you repeat something over and over it sticks in your brain."
It's the only thing that has worked for Jacob, the Moursis said. Three years ago the boy could not talk or control his behavior; now he's able to sit with his grandmother or ask his father for a pony ride.
They plan to contract with the same nonprofit to provide the applied behavior analysis therapy in the school. Parents will still bear the cost, but the school will provide a central location so therapists do not have to visit individual homes.
More importantly, Moursi said, the school will be a place where parents are viewed as partners, not antagonists - where education is transparent.
"I have a feeling in a couple of years this school will be so popular, and so busy, because it will be able to fulfill the needs of the parents."
S.I. Rosenbaum can be reached at email@example.com or 661-2442.
[Last modified February 21, 2008, 21:05:34]