Florida

Putting Education Reform To The Test

Social Media Helps Student With Autism Find His Voice

Courtesy of Lauri Hunt

Henry Miles Frost and his service dog, Denzel, protest outside a downtown Tampa building during the Republican National Convention. Since he posted the photo to Facebook, he's found global support in his effort to enroll in his South Tampa neighborhood school.

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.”

Knocked Off His Path

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.’”

“Sometimes It’s Just A Disagreement”

Hillsborough County school board chairman Candy Olson.

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.”

“Killingly Hard”

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

-Henry Frost

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.”

Comments

  • http://www.facebook.com/profile.php?id=100000318462315 Dean McIntosh

    The entire adult autistic community has been saying in one loud voice that “…with autism” is not acceptable. Myself and Lydia Brown are just two examples of autistic adults who write about why. But one of the reasons is that talking about an essential component of a person as if it is a separate thing is not acceptable. You do not say “person with blackness” or “person with Asianness”. Yet it is okay to use such racist or neuro-ist language against the autistic in your eyes. It is not in ours. Please stop.

    • StateImpactJOC

      Dean,

      Thanks for writing. We appreciate your point of view.

      However, we’ve spoken to plenty of folks with disabilities who prefer the “…with (whatever)” formulation because it emphasizes the person and not the diagnosis.

      This is something we’d love to hear more opinions about from readers.

      • http://www.facebook.com/laurie.reinders Laurie Reinders

        Most likely the types of disabilities you are speaking of are the *visible* type. Autistics <—That's what the autism community prefers. It is what I call my son & husband, and what they refer to when speaking of their invisible disability to others.

        • StateImpactJOC

          Thanks Laurie

      • http://www.facebook.com/profile.php?id=100000318462315 Dean McIntosh

        It is not a matter of preference. One is right. The other is wrong. If you do not understand that, then you have no business trying to speak for us.

        Important to understand here is that “…with autism” carries some very nasty connotations for autistic adults. Especially ones like me who have PTSD complications to add to the mess. As I said, “with blackness” is unacceptable, so why is separationist language okay to use on us?

        Autistic individuals who proclaim preference for “…with autism” only do so because they have yielded to diseducation and bullying. There are no two ways about this. Anyone who says otherwise is clearly not an autistic man who grew up in an era when bullying children for exhibiting even the slightest difference from the expected norm was not only accepted but actively encouraged. I live every day with the consequences of the ignorance of autism that was prevalent during my childhood. So talking about something that shapes every little thing I sense as if it is a separate entity to me is not only wrong, it will provoke violence on my part in a face-to-face setting.

        If you think this is excessive or irrational, try calling a poor black man who lives in Harlem or South Central (to name two internationally-accepted associations) a “man with blackness”, and see what happens. The act does not differ, only the cosmetics.

        As I have written about at length on my own journal, so-called “person first” very often has the uncared-about result of putting the actual person LAST. I hope this statement I was a little too verbose in makes that clear enough to all concerned.

    • Bekki

      I say my son is autistic. It is apart of who he is, not some disease. Parent’s often like to use the “person first” language because they can’t accept their child is autistic, but it has seems the overwheling opinion of adult autistics is the opposite. I will stand with them and when my son is old enough, he can decide for himself. Oh, and I stand with Henry!

    • Multiplicity

      Dean,
      I applaud you for speaking out for yourself and for the autistic community. But at the same time, there are many of us with disabilities – including many somewhere on the autistic spectrum – who DON’T want to be known as the label first, person second. I’ve been diagnosed with Aspergers and assorted other things. My “label” would need to be something like that “epileptic aspergers treatment-resistant depressant” guy. I’d much rather be known as that guy or even that guy with a bunch of neuro problems. Either way, put me first, not my diagnoses. And I never, ever want to hear my daughter referred to as a “Down syndrome girl.”

      Ah. After reading a few more comments I understand a bit better. Thank you Laurie and others.

  • http://www.facebook.com/heather.clark.75 Heather Clark

    Henry is absolutely inspiring others. My family is proof of that. We stand with Henry.

  • Teacher28

    Thanks for bringing attention to the real story here That a child is being kept from attending his school because of his disability. It is odd that is what 3 of the 4 comments are about something different than segregation.

  • http://www.facebook.com/profile.php?id=609865967 Amy Gould Caraballo

    I would like to point out that Federal law trumps state law. Florida can add to the law but never deviate from it. According to IDEA, Least Restrictive Environment always starts with inclusion, in the district building, program and classroom where the non disabled peers attend. And contrary to what the school states, this is never about “what the family wants” or “what the school wants.” This is about needs and rights of the individual student. This child has a right to attend the same school as his non disabled peers unless the school can prove he cannot be properly educated there. It’s not about the family’s burden proof. Quite the opposite. The very fact that this school district has self contained “special needs” classrooms speaks volumes of how they are not individualizing any children’s education programs.

    • http://www.facebook.com/kfisherx Karla Fisher

      I agree with Amy. Least restrictive is important piece here. Have you guys done a formal due process? Would you like an autistic advocate? I bet we can find a few.

  • Lisa

    This is all so wrong. Money can NEVER be used as an excuse to deprive a child with an IEP under the IDEA. What is it that cannot be accomplished at this school. I find it hard to believe that there is anything that cannot be provided at his home school. It seems like this is just a plain case of segregation because it is easier and cheaper to warehouse “these kids” at a special school. The special schools do nothing for these kids and usually cause more harm than good. It is absolutely unbelievable that this is happening in this day and age. Read about the IDEA and Section 504 of the Rehabilitation Act. And what is more frightening is the so called disability advocate who is supposed to be advocating on this kids’ behalf. She sounds like she works for the school.

  • http://www.facebook.com/pdurbinwestby Paula C. Durbin-Westby

    Henry needs to go to school in his district. Emphasizing the “person” and not the “diagnosis” demeans the diagnosis, which demeans the disability, which is always a part of the person and not something separate at all. Hence, most Autistics using “Autistic” (sometimes with a capital A like I do and often with a lower-case a, as “autistic.” But, back to getting Henry to a Free Appropriate Public Education in the Least Restrictive Environment, that is, the school across the street.

    • StateImpactJOC

      Thanks for responding

  • Jill Keating

    Are we sure this disability advocate is representing this child?
    Surprised she would make comments like that? Maybe they are “parent
    liaison” group advocating/ working to help school resolve.

    • StateImpactJOC

      Ms. Siegel works with the group representing Henry Frost. However, her comments are about cases they see generally, and not Frost’s specifically.

  • BM

    This to me is the new colored water fountain! The family should seriously consider filling a Federal 504 complaint of discrimination. To this parent, it looks more likely that the district’s not willing to provide Henry genuine access to the district’s general curriculum because of some possible unique supports and accommodations to successful. It can be much easier to bus him away to a center based program with lots of services and little expectations. It’s not hard to imagine that it could possibly be more about apathy, hard work, and the district’s state test assessments and No Child Left Behind.

  • http://www.facebook.com/emilie.austin.mullins Emilie Mullins

    It’s so sad that the district continues to discriminate against this child. “Only 7 cases went to a judge”… because it costs the parents a lot of money to hire a lawyer. Readers, don’t be misled to that only 7 parents are unhappy. Only 7 have had the resources to pursue due process in front of a judge. To the family, please file a complaint with the federal Office of Civil Rights. More special education complaints than ever are being investigated by OCR see: http://www.disabilityscoop.com/2012/10/03/school-complaints-record/16578/ and http://www2.ed.gov/documents/news/section-504.pdf

  • Tonya

    The comments made by the Hillsborough County School system are not shocking in the least. I have a child with a disability within this school system and our experiences have been disheartening. I have had many conversations with overwhelmed and frustrated parents battling for inclusion. (Only 7 took the disputes to the judge) Did the school system keep track of all the families who were denied access to an inclusive classroom environment? Of course not. Family’s are made to feel that we are just asking for too much in these situations. Many feel bullied in the IEP meetings and isolated. The goal is to find reasons to say no. (The school districts require parents to PROVE their child can handle the work) Children with disabilities have to prove themselves before they can walk into a classroom while competence is just assumed in able bodied children until it is proven otherwise. The more they can see the disability the more proof they need. (You’ve tainted a relationship with the school district) Because we fight for the legal rights of our children? (It’s not an efficient use of tax money) Who determines what is effecient and when a child’s education is costing too much? Who determines a child’s worth and potential based on tax dollars. Yes I know….our schools do. In a nutshell this district does not believe in inclussion, segregation is supported to the highest extent.

  • Lisa

    The problem is – you can’t just cry that the school district is breaking the law. There are complaint processes and other mechanisms so these districts are held accountable for violating the law. States can actually have their federal funding cut for not educating all sp ed kids in the LRE. Schools do what they do because there is basically no one holding them accountable.

  • http://twitter.com/abc4success Michelle R. Davis

    Does Henry and his family know of their rights to revoke consent for special education? Revoking consent removes the IEP and Henry could still qualify for services and accommodation via the 504 Plan. I’m happy to help! abc4success@msn.com

  • Laurie

    If the child can be in the typical classroom with support, then the school must give him that support. It’s not “prove to us you can do this by yourself” and then we’ll let you in; it’s “what support can we give so this child can be included with his typical peers”. If,for example, he needs help climbing the stairs, there are all kinds of ways I can think of to help him get upstairs. If, after really trying various support, things don’t work, then and only then should specialized classes be considered.

  • Steve

    Great story John, keep up the good work. Steve

  • Steve

    This is a link to where you can e-mail the entire School Board of Hillsborough County and send them a message:

    http://www.sdhc.k12.fl.us/board/Form_Board.asp

    I stand with Henry

    Steve

  • Steve

    This is not surprising from a District that led the State in putting disabled students into solitary confinement. In the 2010/11 school year FLDOE reports 968 “seclusion” incidents in Hillsborough, 22 of them for over 3 hours. No surprise that while on the outside these Districts have a no-bully policy for students, the District is the biggest Bully on the block.

    All the Districts in Florida need a reminder:
    YOU EXIST EXCLUSIVELY TO SERVE ONLY THE STUDENTS.

    There are teachers Unions for the teachers that do an outstanding job representing them. There are organizations and lobbyists that represent the administrators and the Districts. PUBLIC SCHOOLS ARE ABOUT THE STUDENTS

  • Tami

    This is such an important issue. Henry, thank you for being brave and taking a stand for your rights. Many others will benefit from your actions. We support Henry…Hillsborough County school district should too!

  • Lmn1996

    The rule is the least restrictive environment.

  • http://twitter.com/autismrw Autism Rights Watch

    Update: Nov 13: Henry is allowed to go to high neighborhood school. It is great news. Happy End for Henry and a victory for Autism Rights Watch.
    http://www.autismrightswatch.com/2012/11/happy-end-henry-victory-for-autism-rights-watch

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