Wednesday, September 19, 2012


"to the maximum extent appropriate, children with disabilities, including children in public or private institutions or other care facilities, are educated with children who are not disabled, and that special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily."
The above is a powerful selection from Part B of the Individuals with Disabilities Education Act (IDEA), a federal law that applies to all public schools in the United States who receive federal funding.
"The School Board of Hillsborough County, Florida, does not discriminate on the basis of race, color, sex, religion, national origin, marital status, disability, or age in its programs, services, activities or in its hiring and employment practices. School Board Policy 1122 ensures equal opportunity for all in its personnel policies and practices" (emphasis added).
The above is an excerpt from the Hillsborough County, Florida school district website. It is, in fact, listed as a disclosure on the homepage of their website, found here.
Henry Frost
“I am Henry, a self advocate. I want the same rights as everyone.
Today I read about Martin Luther King.
The worksheet said because of Dr King’s work, the Civil Rights Act of 1964 gave equal rights to all people.
I am a person.
I want these rights.
I want to go to school in my neighborhood.
Why can’t I”?
The above is a plea from Henry, a thirteen year old autistic self advocate. Henry is a resident of the Hillsborough County school district. Henry uses assistive communication software on his tablet computer to communicate. He also has hearing loss and relies on special hearing-aids.

As you likely realize from Henry's plea, the Hillsborough County school district has refused to allow Henry access to the least restrictive environment. In fact, Henry isn't even allowed to go to the same school his neuro-typical sisters attended (edited 2:55pm) - a school which is across the street from his family home. Hillborough County has decided unilaterally that Henry isn't capable enough to attend their educational program.

Henry's school district has, to date, not held an appropriate IEP meeting. Instead, they have created an internal "good old boy" court in which Henry cannot give input and which his parents are not allowed meaningfully participation. At Henry's last IEP meeting there were 18 district staff members present.(edited 2:55pm) Henry and his family were put on trial in attempt to convince the school of Henry's rights. Instead of allowing the IEP "team" to discuss the goals and accommodations for his educational plan, the school unilaterally determined Henry cannot attend without passing their proprietary "tests" to prove he can cope. Tests of these sorts are not legal.

"Wait. What," you say? Isn't Hillsborough County discriminating and breaking the law? How can a school discriminate like this and not be sanctioned? Yes they are discriminating and the reason is simple.

Every single case of discrimination is processed separately through expensive and stressful due process. Families must hire attorneys at great costs and file discrimination suits. Schools routinely retain attorneys for all their legal troubles. They have lawyers at their beckoned call who stand ready to defend. Schools like Hillsborough County know they have the upper hand. They know that resources are scarce for most of the families they discriminate against. They gamble on the fact that most families do not know the law or do not have the financial or legal resources to fight back. The system is broken.

What Hillsborough County is doing is not uncommon. This is a systemic problem in the United States. Schools know the law better than the families. School districts have legal know-how to continually break the law with little worry. The students who suffer are collateral damage so that the schools can keep the status-quo; that is, to only properly educate the students who are easy - the typical, average student.

What Hillsborough County school district fails to realize, however, is that Henry and his family are not alone. Thousands have taken to blogging and social media to make sure this story is heard. It is only a matter of time before Hillsborough County school district begins to feel the sting of their actions.

I stand with Henry. Won't you?

Edited 2:55pm- originally stated a regular education teacher was not present. This may be the case but has not been confirmed. & The student's sisters no longer attend the same school building as they now attend high school which is a different building.

Thursday, September 13, 2012

I Stand With Henry

On the tails of my last entry - how functioning labels are harmful, comes young nonverbal autistic, Henry. Henry wants to be treated like a human being. He wants people to stop talking in front of him - about him - like he's not there. He wants to go to his neighborhood school. Not in some self contained segregated classroom. He is smart and wants to be treated with dignity and respect. Henry is not an anomaly and we must stop thinking that he is. Many autistic people with communication differences are labeled with low IQ and lack of potential -  inappropriately so. We must STOP. NOW.

I stand with Henry because every student and every human should be afforded equal rights and respect no matter. Only when society stops sorting and valuing people based on labels will society truly be free.

[edit 9-14-2012] Stand with Henry on Facebook at

Wednesday, September 12, 2012

School House Rock and Autistic Labels

"Conjunction junction, what's your function" is still running through my head after whipping out the School House Rock DVDs to supplement my kid's grammar lesson yesterday. Whatever happened to that priceless educational Saturday morning cartoon extravaganza? I can still recite the preamble to the US Constitution (there's some useless trivia). School House Rock just rocked. So today when I stumbled on yet another tireless debate about autistic function levels, I thought,
"Hey! Conjunctions have functions. My child is not a conjunction!"
(side note, I totally used an "Interjection, for excitement or emotion - generally set apart from a sentence by an exclamation point, or by a comma when the feelings not as strong..." carry on).

The old school lingo of high functioning and conversely low functioning autism has been wrought with problems. First off, who wants to be given a function level? Am I a high or low functioning writer (wait - don't answer that)? Are you a high functioning or low functioning reader? How about my music skills in which I'm a tad prideful? Should I refer to myself as a high functioning musician or a low functioning musician? You get my point. These labels are subjectively defined and have no real definition.

What makes someone "high functioning" as an autistic? Does that mean they must communicate verbally with average to high intelligence as based on standard measures? Or does it mean, they can speak their mind through writing even when they cannot speak verbally? Or is it based on some wacky formula for calculating potential? Furthermore, who sets the bar on what potential even is? 

Many autistics cannot communicate verbally or struggle to do so. If a person cannot communicate their needs undesirable behavior ensues. If someone were to take away the average person's ability to communicate, we can imagine that frustration would overtake and undesirable behaviors would result. It's really not rocket science (for that we need Interplanet Janet).

A good many of autistics who cannot verbally communicate, are extremely eloquent with the written word. A good many outperform typical people in academics. But here's the thing. Someone had to recognize these autistics had potential. Functioning labels prevent us from recognizing potential.

Every child should be given and taught to use tools for communication. I don't mean PECs - I mean real techno-savvy language tools. Word processing, Ipads, whatever we can find to help these people get their voices heard. With today's technology, there is little excuse for a human to be kept from communicating. 

So the next time I hear someone use a function label to describe a human, I'm going to relentlessly sing School House Rock songs until they recognize how harmful those labels are. 

Tuesday, September 4, 2012

Using Our Children for Perks

The universal accessible parking sign is well known to most folks. Certain parking spots in the United States have designated signs that indicate only those with valid passes can use these spots to park their vehicles. Though states differ on qualifications and fines for abuse, each state seems to offer either a license plate or hanging placard that grants the vehicle close access.

We often find ourselves making quick judgments on those using these passes at local establishments. Many times, seemingly "typical" people walk exceptionally well across the lot to the store and we think "abusing the system." But in reality, we cannot and never should judge a persons abilities by their looks. Many of these folks may have invisible disabilities that do require shorter walks (asthma, emphysema, or neurological disabilities come immediately to mind). So today when I stumbled on an blog promoting the use of such cards for families with autistic children, I thought, "what a great idea!" Some autistic children do have difficulties with parking lots (mine is one of them).

When my kiddo was younger, one of these passes would have prevented much anxiety for all of us. But as I read on, the tone of the blog took a turn for the worse. Language such as "playing the A card" and "perks of Autism" paint a very different reason for obtaining the pass. This language indicates that parents should take advantage of the system because of their burden autistic child.

This blogger may have had well-meaning intentions. It does, indeed, sound like his child benefits from having such a pass. But the language used in this article gives justification for systemic abuse that helps foster resentment of our children by society, in general.