Saturday, October 13, 2012

Florida autistic teen uses social media to fight for right to attend his local school

From NPR's State Impact in Florida:

Sometimes a picture can be worth a thousand followers too.

That’s what happened to Henry Frost after he posted a photo to Facebook.

The photo shows 13-year-old Frost sitting on the steps outside a downtown Tampa building with his service dog Denzel. Not shown are the thousands of Republicans who had gathered nearby for the week-long Republican National Convention.

Frost holds a sign. It reads: “The Civil Rights Act of 1964 granted equal rights to all people. I am a person. I want these rights.”
Frost has autism and a list of related physical problems which have so far eluded a tidy diagnosis. He communicates using an iPad app that speaks what he types.

The right Frost is seeking is the ability to attend Wilson Middle School in his South Tampa neighborhood. The Hillsborough County school district has told Frost they believe he is better off at a specialized program at Coleman Middle School, his family says.

Frost’s photo – and his cause – has gone viral since the photo was posted at the end of August. Thousands have given it an electronic thumbs-up on his I Stand WITH Henry Facebook page. And more than 2,100 have signed an online petition asking Hillsborough schools to let Frost attend Wilson Middle.

Disabilities and special education experts say it’s a common dispute: A family and a school district disagree about what school is best for the student.

School officials say they work hard to give thousands of students with disabilities and their parents what they want. But sometimes parents don’t get the final decision and school officials do.

While he tries to win admission to Wilson, Frost is taking courses at home online. His family worries he is falling behind his classmates. Frost says he just wants to prove himself in a general education classroom.

“Please see me as a person like you,” he types, triggering the mechanical voice of his iPad. “I would like the chance to try.”

Just over a year ago the idea of Frost leading a protest was unthinkable, his mother, Lauri Hunt, and stepfather Russ Hunt said.

Frost was attending a charter school which specializes in special education. His family took educators at their word that Frost was getting everything he needed in school.

He was interested in cars and asked his parents for a ride in a red Camaro for his birthday.

And then Frost saw a documentary called “Wretches and Jabberers” last spring.

The movie follows autism activists Larry Bissonnette and Tracy Thresher as they travel the globe talking to reporters and others about autism. Often, they answer reporter questions by typing answers into a device which speaks the words.

It was the first time Frost had seen people with autism describing life with the disorder in their own words.
Something clicked in Henry, his family said.

“It knocked him off his path,” Russ Hunt said of the movie’s effect on Frost wanting to switch schools. “From that point on that was how it built.”

Bissonnette and Thresher visited Tampa and met with Henry soon after.

Communicating through an iPad is both painstaking and efficient.

Frost often gets stuck trying to answer questions, constantly referring to friends or past events.

That’s when the movie serves as a reference point in Frost’s life.

Frost uses an 18-second piece of the movie’s soundtrack to focus himself when his mind gets caught in one of the repetitive loops typical of autism. He uses the soundtrack as a shorthand way to describe what he’s thinking or feeling.

When Frost gets overwhelmed by a reporter’s interview questions, he regroups in another room – just as a character does in “Wretches and Jabberers.”

Lauri Hunt has to remind Frost to return to his “thinking spot” if she sees him start to hover while typing. She might put her hand on his elbow or shoulder to help him focus. Sometimes he brushes her away.

But Frost can also quickly sift through hundreds of saved phrases and find what he needs. That includes the ability to quickly explain his medical history to paramedics or doctors.

Lauri Hunt said the way Frost views himself has changed after seeing the movie. For the first time Frost started telling people what he wanted.

“In the last year he’s like ‘I,’ ‘I,’ ‘I,’” Lauri Hunt said.

And that means seeking rights for the disabled, including protesting in downtown Tampa during the RNC.
“He started with ‘I would like these rights,” Lauri Hunt said. “Then it was ‘I want these rights.’ And now it’s ‘I have these rights.’”

Despite what Frost and his family want, special education experts say parents don’t always get to choose. That’s because when a labyrinth of federal and state laws meet local practice, sometimes the two sides can’t agree.

Federal law says that students with disabilities have a right to a free and appropriate education in the least restrictive environment. Experts say that puts a preference on educating students with disabilities in general education classrooms.

Florida law has a similar preference, stating students can only be put into special classrooms if a school cannot accommodate the disability with aids and services in a general classroom.

But sometimes educators and parents disagree about what should be in a student’s education plan and where he or she should attend school.

Privacy laws forbid school districts from discussing individual student cases. Hillsborough County schools said they follow the law and declined to speak about Frost’s request.

Speaking generally, school board chairman Candy Olson said disagreements between the district and parents are rare.

Last year the district designed special education plans for 25,000 students, she said. The parents of just seven students took their dispute to a judge.

Olson said it’s difficult to tell a parent they can’t send their child to the school of their choice, but the district only does so when they believe the student would be better-served or safer at a different school.

“It’s heartbreaking and it makes you angry,” she said. “But there are laws and they’re meant to protect everybody.”

Disabilities advocates say Florida school districts have different views on including students with disabilities in general education classrooms.

Ann Siegel is an attorney with Disability Rights Florida. The group handles about 300 special education disputes each year, including Frost’s.

A Florida Department of Education memo says it’s up to a school district to prove why a student shouldn’t attend a general education classroom.

But Siegel says districts often require that parents prove their child can handle the work. School districts know the process and the law better. Parents can find it difficult to oppose their team of experts.

Parents find it hard to accept the decision isn’t always theirs, Siegel said. They don’t always like the results when they win and their child is placed in a general education classroom.

“There’s very little that I find is black and white in special education,” she said. “Even when you win, you’ve lost time. And you’ve tainted a relationship with the school district.”

Hillsborough County school board member Olson said she understand how it looks when a school district says no to mom. But she says they have to follow the law and the student’s education plan.

School districts can’t afford to hire specialists for every school – it just isn’t an efficient use of tax money, she said. But the school district provides for every student.

“We see miracles with children with special needs,” Olson said. “It’s not for lack of trying; it’s not for lack of caring. But sometimes it’s just a disagreement.”

But while the school district disagrees, Frost is taking classes at home. Lauri Hunt believes he is falling further behind while the family tries to prove he can handle life and work at Wilson.

She worries how other will react to Frost’s public protest.

“You do spend your whole life trying to protect your kids from everyone knowing so much about them,” she said. But the family said the reaction has been mostly positive.

Neighbors have rallied to support his cause. So have strangers on the Internet.

Frost finds some inspiration in the movie “Hairspray,” about Baltimore students who fight to integrate a 60’s television dance show.

“It’s killingly hard to say how I feel,” Frost said – another reference to a line in “Wretches and Jabberers.”
But does he feel like he inspires others, just as Bissonnette and Thresher did for him?

“I think yes,” he said. “I am kind and treat people with respect. That is a role model.”