Parents' Corner

May 2007

Robin Hurd

This month’s guest writer is Robert Rummel-Hudson, father of 7 year old Schuyler, who uses AAC. You may visit his web site at www.schuylersmonster.com or e-mail him at robert@schuylersmonster.com with any questions or comments. I hope you enjoy this great story from another parent whose child uses AAC!

Robin


Intro to our Guest Writer
When my daughter Schuyler was eighteen months old, a simple question by her pediatrician ("Is she making any effort to speak?") set in motion a slow transformation for me, from befuddled dad to the very last thing any new father or mother ever expects or desires to become: a special needs parent. Schuyler was eventually diagnosed at the age of three with Bilateral Perisylvian Polymicrogyria, a rare brain malformation that can result in a wide range of symptoms, from life-threatening dysphagia to grand mal seizures to varying levels of retardation. In Schuyler's case, its primary effect has been on her speech, which is practically non-existent.

In my book, SCHUYLER'S MONSTER, I tell the story of her first seven years, from that first innocent question to her eventual success using an AAC device to communicate and her entry into a school with a successful AAC class for her. Armed with nothing more than my love for my tenacious little girl and my family's determination to defeat her rare and invisible disorder, I fought my own depression, my past family dysfunction and the nagging suspicion that I was not the right person for the job. In doing so, I discovered a sense of purpose and responsibility, and became the father and advocate that Schuyler needed to help fight her monster.

SCHUYLER'S MONSTER will be published by St. Martin's Press in February 2008

Coffee Talk
Sometimes we do things for Schuyler that help her along in the world. We make decisions and sacrifices that turn out to be the right ones and which propel her down smooth, bright roads.

Sometimes she does it herself. Most of the time, she pushes herself down those roads.

The other day, we took Schuyler to a local mall so she could run around and play without being subjected to (or subjecting us to) fried "foods", cheap Happy Meal toys or demented clowns. At this particular semi-fancy mall, there is a huge play area that Schuyler loves. It is one of those new trendy playgrounds made of squishy giant forms that the kids can climb around on and fall off of without incurring litigation.

In the case of this particular play area, the theme was "giant breakfast". A twenty-foot plate held a steak the size of a queen-sized mattress and two wagon wheel-sized eggs. A slice of grapefruit was topped by a cherry the size of a basketball. It is a very very cool playground.

Schuyler was having her usual great time on the Big Breakfast; I think it's probably her favorite place to play, with the possible exception of the previously mentioned and oft-requested Clown House. As she tends to do, it wasn't long before she'd made some friends. In this case, it was two sisters who wanted to run around the giant plate, alternately chasing and being chased by Schuyler, and their brother, who kept us as best as he could despite a cast on one leg.

After exhausting themselves, the four of them climbed into the giant, jacuzzi-sized cup of coffee and began the whole "So who are you and what's your scene?" discussion. Before it got very far, Schuyler ran over to us and grabbed her Big Box of Words (BBoW).

What happened next stopped us in our tracks. And by us, I don't mean just Julie and I, but rather every parent in the area. We all sat, silently mesmerized, as Schuyler began demonstrating her device and asking questions of all the kids present. The four turned to six, and then eight little kids crowded around the giant cup, fascinated by this hard-playing, hard-laughing little girl with the robot voice. All the adults watched in wonder as a crowd formed around one little girl. I think they worried about the Revolution of the Small beginning at that moment.

At the center of it all was Schuyler. She asked everyone their names and how old they were, and she answered their questions as best as she could. She led a cyborgian rendition of "Old Macdonald Had a Farm". And when one little girl repeatedly tried to reach over and take the BBoW, Schuyler told her "No." and sternly pointed at the ground outside the cup until the little girl glumly climbed out and skulked away.

Banished by the Cyborg Princess. It's a harsh world in Schuyler's Coffee Cup.

For a full twenty minutes, Schuyler held court, and kids came and went from her audience, aside from the siblings she'd befriended, who never left or took their eyes of off of her. It was only after the kids' mother came up nervously and started checking them out that I approached them. I could see at a glance, as is often the case, that while the kids were all fascinated by and even envious of Schuyler and the BBoW, their mom was a little freaked out.

That's how it usually happens. Almost every time, actually. If someone gets spooked by Schuyler or her monster, it's almost always another adult, as if their kid might catch whatever she has. Kids her age tend to absorb what's different, make their quick adjustments in order to facilitate play, and then go on. Can't talk? Well then, let's run around and howl instead.

When I came over to check on her, Schuyler looked up at me and smiled. I could tell she was as happy at that moment as she's ever been. Then she turned to her new friends, lifted the BBoW over her head without looking at me until I dutifully took it from her, and then she leapt out of the cup and ran away, off to conquer the giant bacon.

Her new gang of transfixed friends followed close on her heels. They didn't leave her side until their skittish mother finally took them home, and their eyes followed Schuyler until they were out of sight.

She was already making a new friend by then.


 

I (Robin) always value your feedback. parents@aacinstitute.org.

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