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Schuyler

"My Name is Schuyler"

by Robert Rummel-Hudson

"Hi, my name is Schuyler."

The first time I heard those words, my daughter was five years old. I had arrived to pick her up from her special education class at her school, and I found her waiting anxiously, peering at the door excitedly. I knew something was up as soon as I saw her; Schuyler had never suffered from separation anxiety, and she was usually heartbreakingly reticent to leave school at the end of the day. But today was different. Today, she had a voice.

The first thing I saw was the device strapped around her waist like a jogger's pack. Large and clumsy, looking for all the world like a toy, the Hip Talk wasn't terribly impressive to look at. Schuyler would outgrow it almost immediately as she began her journey into the world of assistive technology. But when she pressed a button on its face and I heard the voice of her teacher's aid, I instinctively knew that something had changed for us. A much-desired but ever-elusive door had opened, and it would never be closed again.

"Hi, my name is Schuyler."

By the end of the semester, Schuyler was using a PRC Vantage Plus, and from the very beginning, it unlocked so many portals for her, and so much potential seemed to be released. And yet, as we quickly learned, acquiring a speech device was just the first step.

Diagnosed at the age of three with a rare neurological brain disorder called bilateral perisylvian polymicrogyria (PMG), Schuyler had never spoken an intelligible word. In a lot of ways, she was lucky. PMG can strike in a number of ways, most of which Schuyler was fortunate enough to avoid. She was entirely ambulatory, for example, and aside from a little clumsiness, some fine motor issues and occasional drooling, you'd be hard pressed to even notice at first that she had a disability at all. She had some minor swallowing issues, mostly with foods like hard candy and crackers, but didn't need the restrictive diet or even the feeding tubes that some PMG patients required. Her cognitive abilities, while difficult to determine precisely (as it is with any non-verbal subject), appeared to be well above the range of mental retardation. The seizures that could be life-threatening and which, we had been warned, were inevitable for all but about ten percent of polymicrogyria patients, had yet to manifest. Schuyler was among the luckiest of the unlucky.

When it came to her speech, however, Schuyler's polymicrogyria, which we often referred to as her "monster," had landed with both feet. While she was eventually able to master inflection in her voice, and could form her vowels and a few soft consonants, she had no hard consonants. Furthermore, her control of the few soft consonants that she did possess was intermittent. For a number of years, for example, she was unable to say "no" and would instead say "mo." Yet until she was six years old, she was unable to muster that "m" sound into the word "mommy." Schuyler's language had a musical quality, a little like that of a deaf child. It possessed a beauty, like words spoken by a visitor from another world. But most of it was difficult for us to follow, and impossible for anyone else to decipher.

As we began exploring the possibilities of assistive technology when Schuyler was five, we tested a number of different devices of varying complexity and by different manufacturers. Schuyler gravitated to the Vantage Plus almost immediately, and even in the short time she evaluated the device, we could see its potential. Instead of just giving her preprogrammed pages of useful phrases, it led her through language, teaching her about how the things she wanted to say were constructed. It appealed to her inquisitive nature and her extremely sociable nature. I sensed that she'd been longing for years to have an actual conversation.

Our (and her) enthusiasm for assistive technology was not shared by everyone. In my upcoming book, Schuyler's Monster: A Father's Journey with His Wordless daughter, I describe in frustrating detail our struggle with teachers and particularly administrators at Schuyler's school, both in acquiring the Vantage Plus in the first place and subsequently in supporting its use in her life and in her curriculum. We learned the hard way how important it is to have good support people in place when teaching a child how to communicate using AAC technology.

The first time Schuyler had her device taken away from her because it was "disruptive" in the mainstream class that she was attending for an hour a day, we were livid. "I assume you have other children who talk out of place in class," Schuyler's mother said in a very tense parent teacher conference. "Do you put duct tape over their mouths when they do?" In the following weeks, we discovered that the voice output was being turned off at times as well. The effect on Schuyler was profound.

Her enthusiasm for her device drained away, and seemed to be replaced by the thing I'd dreaded for as long as I could remember. Schuyler understood for the first time exactly how different she was. Where once she was fired up about using the Vantage, she now would fold her arms stubbornly and refuse to use it. The device was no longer a tool for communication and a bridge to a world where she'd previously been, at best, a visitor. It was now a thing that marked her as weird.

When we visited the north Dallas suburb of Plano a few weeks later, we knew the school district had an assistive technology team, but it wasn't until we met with that team that we were told of a new class being put together, a class devoted to AAC users. Students would attend the class in the morning, and would then join a mainstream class for the rest of the school day. They would have a community of their own, but would also learn to work and live in the neurotypical world. More importantly, the neurotypical world would learn to live with them. The first time we walked into the AAC classroom and saw the walls covered with Unity symbols on laminated sheets, we knew that we'd found a special environment, seemingly made just for Schuyler.

Two and a half years later, Schuyler is thriving. Instead of an outsider, she feels like part of a family. The class has doubled in size since the beginning, and now numbers about a dozen kids of various levels of device usage and disability. Some use wheelchairs and a head switch; others are, like Schuyler, largely ambulatory. But they all share a common possibility, a technical solution to communication problems that once seemed insurmountable.

I can't see into Schuyler's future. No one can, not the most esteemed doctors or the most skilled teachers, which was a hard learned lesson for us. Schuyler is writing her own future, one that will defy expectations and well-worn narratives. Now she's got a voice, and the means to learn not just how to use it, but perhaps one day to play it like a virtuoso. At long last, her monster has a leash.

For more information on Schuyler's Monster: A Father's Journey with His Wordless Daughter by Robert Rummel-Hudson, visit www.schuylersmonster.com. The book is available for pre-order and will be released February 19, 2008.