Sunday, August 06, 2006

If He Only had a (conventional) Brain...

Every night at bedtime, my son and I read from his favorite book of the moment. This week, David's text of choice has been "A Brief History of Time", by Stephen Hawking.

Anyone who knows much about Mr. Hawking knows that this brilliant scientist lives with ALS. From his wheel chair, and using his only working hand to point his communications, letter-by-letter and at the rate of 15 words per minute, Hawking managed to write the book that has so captivated my son. David will sit and listen to Hawking's theories for as long as I have breath to read.

My eleven-year old boy's keen interest in physics, when paired with his ability to comprehend Hawking's theories, would likely qualify him for any gifted education program in the world. If, that is, he were a typically developing child.

David is anything but typically developing.

That my son has developed a case of hero-worship during our reading of Hawking's work comes as no surprise. Role models for children like my son remain few and far between. David and Mr. Hawking face eerily similar challenges which make it extremely difficult for them to express their intellectual abilities. You see, my sweet, brilliant boy lives with severe, nonverbal autism. His sensory impairments and hyper-sensitivities make for a very painful existence. So, I feel that David needs to hear the words of a "can do" peer as often as humanly possible.

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David has been a victim of publicly funded special education since he was three-years old. I trusted his educators when they named themselves experts in autism. I allowed these self professed "experts" the latitude to do their jobs. It is a decision that I didn't see the necessity to remedy until it was too late.

In four years of precious early intervention time, David could not show himself able to learn more than his ABC's and how to match color blobs.

So that's what he did. All day, every day, ad infinitum, David remained held hostage to an un-varying and impossibly low standard for measuring progress. In the name of tax-payer funded education, David spent many days tied into a chair for failing to sit still.

In retrospect, I wonder how on earth I could have failed to see the reasons why David grew increasingly unhappy, and violently self abusive before I finally did.

In 2000, my frustration with David's ability to progress grew in direct proportion to his misery. Severe aggressive behaviors began to become the new "normal" for my once angelic son.

David began running away at school. He began to be confined to filthy, unventilated closets re-named as "classrooms". His teachers hadn't even bothered to clean the stage props out first. They simply threw a sheet over them, and expected that I'd never find out.

David began to act out at the very sight of a school bus.

The school refused to see my son's new behaviors as an attempt to communicate.

So, I emptied our savings account and dragged my then seven-year old son to a Picture Exchange Communications (PECS)Camp.

In ten day's time, David managed an "impossible" feat. He learned to independently communicate his wants and needs through substituting picture cards for words. My son arrived at the camp unable to communicate in any way. He left that camp, not only with a functional method of communications, but the ability to form small sentences and identify items by shape, color and size.

Even in the face of this miracle, David's educators remained steadfast in their refusal to admit that there may be more to David's intellect than standard assessments could show.

Sadly, David's gains at PECS camp were not consistently reinforced at school. His teachers would not "buy into the method." In a heartless display of professional conceit, all school-based attempts to advance David's communications abilities further were soon abandoned.

While David remained happy at home, where we encouraged his growth as a communicator, his school days declined into chaos.

And David grew. As my little boy matured, his wants and needs also increased in complexity. The picture cards which had once freed him could no longer keep up with his expanding desire to communicate more abstract concepts.

His school district refused him the augmented communications device and related expert training required to continue his growth as a communicative human being.

David's behaviors grew more grandiose. His school district's answer was to send my boy out for a walk every time he hurt himself. It didn't take much of a mental leap for David to realize that his most violent aggressions led him to the ultimate reinforcer---being sent outside to swing. All day, if need be. Of course, all hell broke loose.

My memories of David as a happy boy paled in the face of this changeling who posed a growing danger to himself and others. David's destructive new method of communications replaced his desire to use PECS.

David's wrath eventually followed him home. When he threw his baby brother down a spiral staircase because I'd ignored a tantrum, I requested an expert, functional behavior analysis.

Three expert behaviorists, working independently of each other, all arrived at the same conclusion. David's school district had systematically reinforced increasingly dangerous, escape-related violence, until it became his only effective means of communication.

In a desperate attempt by his school district to remedy their mistakes, David ended up placed in a "highly recommended" behaviorally focused residential school in Winter Park, Florida.

At that "highly lauded" facility, our son suffered malnutrition, inappropriate medication, improper supervision, and sexual molestation. All of it funded by tax payer dollars.

In spite of a front page report in the Miami Herald, and subsequent written proof that our son had not received the level of supervision his facility behavior plan dictated, and that his school district paid for, the abuses my son suffered in the name of *certified behavioral therapy* went unanswered.
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That David successfully shows his mastery of Hawking's work through ABCD multiple choice, yes/no questions, true/false questions, and on good days, by independently pointing his responses out letter-by-letter on a QWERTY chart or a handheld, electronic dictionary seems to have become a point of contention with his new school district.

Why is it that I'm not surprised?

Despite numerous video-tapes and real life demonstrations to the contrary, David's intellect is consistently diminished by those charged with seeing to his meaningful education. Instead they charge that those of us who have worked so successfully with David, are apparently performing some odd variant of Voo-Doo.

Surely my son's ability to pass the same standardized curriculum tests used by his non-disabled peers can't qualify as proof of learning. Instead, David's bar for proving mastery of curriculum must be raised much higher than typically developing students.

The problem is that David keeps meeting the ever-rising bar of expectations set before him. Somehow, they theorize, in spite of the fact that we do not guide him in any way towards his responses, we must be prompting David--we must giving him the answers. In spite of the fact that multiple experts have been unable to determine what the "prompting process" is, this notion persists. Ad nauseum.

If there is some elusive prompt transpiring, honestly, even "experts" are unable to discern the nature of it.

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You know, for one hell of a long time, those of us who fought so hard for David's future had little choice than to accept the school district's contention that he was severely retarded. In spite of David's lifelong history of substantial problem-solving abilities and talents for manipulating people and environments to help him access end goals, we had no means to prove that there might be more to David than David could outwardly express.

One desperate trip to the HALO Clinic in Austin, Texas changed the way we would view David's abilities forever. There, under the tutelage of Soma Mukhopadhyay, we found the lost boy who autism had stolen away ten years prior.

And then the strangest thing happened. David's severe behaviors went away, within days of his discovery that there was more to an education than being tied into a Rifkin chair and forced to match color blobs.

My boy has never looked back.

Sadly, his school district refused to buy into the notion that through rapidly delivered attention prompts, David could rise above the chaos of autism long enough to tend to an instructor. Once able to "hear" curriculum, David could prove mastery of concepts read out loud to him by responding with mutliple choice, yes/no questions, true false statements, and pointing to letters to spell his answers.

You know, I've grown awfully weary of having my son held to a higher set of standards to prove his intellect than is expected of his non-disabled peers. If I have grown tired, then imagine how David must feel.

In regards to his own struggle's with a severely limiting disability, Stephen Hawking writes: "For a time, the only way I could communicate was to spell out words,letter by letter, by raising my eyebrows when someone pointed to the right letter on a spelling card. It is pretty difficult to carry on a conversation like that, let alone write a scientific paper."

But Hawking did it, nonetheless.

Spelling words, letter-by-letter was accepted by scholars from Stephen Hawking as valid proof of communications. This simple accommodation for his disability allowed him to write a book which explains advanced physics to a intellectual commoner like me.

So please explain to me exactly where the danger lies in affording my autistic child lesser accommodations than Hawking required, so that he , too, may communicate his intellect, wants, needs, concerns and desires?

Sounds like a job for the Office of Civil Rights to me. It won't be the first time I've filed a (successful) complaint or two.

2 comments:

Thomas said...

Well, I have a couple of ideas. :)

First, another book you might want to read is:

About Time: Einstein's Unfinished Revolution

This is by Paul Davies. Excellent book.

Also, for communicating by way of a keyboard, the best thing I have found is a TRS-80 Model 100. These are rare, and expensive, but they are GREAT for communicating by typing.

You can read about them (and probably even get one) at:

www.club100.org

You can likely find one cheaper on eBay.

You can attach a disk drive by serial cable, or you can store directly to your computer's hard drive. There is a ton of software for it at Club 100.

I have recommended this to a lot of parents and they have all been happy with it.

If you look through the Club 100 software library, you can find a program that I wrote for it several years ago.

Deidre Knight said...

Thank you so much for sharing here. I saw that Sue Grant mentioned this blog, and followed the link and have been sitting here, just aghast at the school system problems you've had. And feeling for you as a mother because I know how much I love my own children. You also made me laugh about the comment about "when a woman of her size and age..." LOL! IT's awesome that you keep your humor. :)
Deidre