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Schuyler's Monster: A Father's Journey with His Wordless Daughter - Softcover

 
9780312538804: Schuyler's Monster: A Father's Journey with His Wordless Daughter
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When Schuyler Rummel-Hudson was eighteen months old, a question about her lack of speech by her pediatrician set in motion a journey that continues today. When she was diagnosed with bilateral perisylvian polymicrogyria (an extremely rare neurological disorder), her parents were given a name for the monster that had been stalking them from doctor to doctor, and from despair to hope, and back again.

Once they knew why Schuyler couldn't speak, they needed to determine how to help her learn. They took on educators and society to give their beautiful daughter a voice, and in the process learned a thing or two about fearlessness, tenacity, and joy.

More than a memoir of a parent dealing with his child's disability, Schuyler's Monster is a tale of a little girl who silently teaches a man filled with self-doubt how to be the father she needs.

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About the Author:

Robert Rummel-Hudson has been writing online since 1995. During that time, his work has been recognized by the Diarist Awards at diarist.net and has been featured in the Austin Chronicle, the Irish Times, the New Haven Register, the Dallas Morning News, Wondertime Magazine and Good Housekeeping, as well as on American Public Radio's "Weekend America."

Robert and his family currently live in Plano, Texas, where Schuyler attends a special class for children who use Augmentative Alternative Communication devices. Much of her days are now spent in mainstream classes with neurotypical children her age.

Excerpt. © Reprinted by permission. All rights reserved.:
1
Kalamazoo
Julie’s pregnancy wasn’t a huge surprise to us. I suppose it shouldn’t have been a surprise at all. We’d been married a few months, and we’d been discussing the future, one with fabulous new jobs in some exotic new location that was in no way Kalamazoo, and that future had kids in it, too. Julie was young, in her early twenties, and I was starting over after a childless first marriage had sucked the life and the better part of a decade out of me. I’d left Texas after twenty-nine years to be with Julie, and I was still adjusting to the upper Midwest. So many changes were afoot, why not a baby, too? How hard could it be? With a merry chuckle and a total lack of any sort of intelligent consideration for the future, we began “trying.” It didn’t take long.
Kalamazoo, Michigan, is our setting, a town located in the strangest place I’d ever experienced, the narrow strip of land running up the western side of the state about thirty miles inland from Lake Michigan. Here’s the Mister Science explanation. During the winter, which in Michigan lasts roughly six months, big fat clouds suck up moisture from Lake Michigan and then move to the east over the landmass of the state. About thirty miles in, the moisture starts to freeze and dumps snow on the poor exposed earth below. This is called “lake effect” snow, and it is extreme. The first time I experienced it, I woke up one morning to discover that thirty-two inches of snow had fallen in the hours I had been sleeping, warm and ignorant, in my bed. Thirty-two inches. I took pictures.
My point about this little factoid is not “Wow, it sure snows a lot in western Michigan,” but rather that it tells you something about the people who lived there. Long ago, when fur trappers and Indians were the only humans who were trudging through this thirty-two inches of lake effect frostiness, settlers arrived, saw this meteorological weirdness and said, “Jebediah, by golly, we’ve found our home.” It wasn’t just Kalamazoo, either. Grand Rapids, which is neither grand nor possessing rapids, falls under the lake’s crazy spell, too. Michigan is a state founded by masochists, and probably not the fun kind, either.
When I look back on our days in Kalamazoo, I find myself missing it more than I ever would have thought possible at the time. I’d had a rough start a few years before, the first time I tried to move to Michigan. The computer sales job I’d secured a few weeks before vanished before my eyes, followed shortly by an impacted tooth in my now uninsured mouth. My boss back in Dallas graciously offered to give me my old job back, but my failure sent me and my swollen mouth limping back to Texas through an actual, honest to goodness blizzard within about a week. I never quite got over the idea that Kalamazoo was trying to kill me just a little.
Truthfully, however, the winters were bad in a way that still thrilled me; when I called my best friend, Joe, who still lived in Dallas, and confessed that having my ass handed to me by such extreme winter conditions was still rather cool, he referred to it as “the pleasurable irritation of the new.” The Kalamazoo summers were pleasant enough, with Lake Michigan so close. The city was home to Western Michigan University and had a funky little college town feel to it, which was a refreshing change from the rustic “Michigan Militia” ambience enjoyed by much of the rest of the state. The town’s most visually striking landmark was a century-old, sinister-looking water tower on the grounds of the state mental hospital, and the park at the center of town was surrounded by tall, grim-faced churches and featured a fountain full of what appeared to be petrified children. Perhaps most impressive, the Burger King near the campus was the site of the very first sighting of Elvis after his death. Or his “death,” if you prefer.
Kalamazoo was a peculiar little town. Even when it was trying to kill me, it charmed me a little.
“Do you want to know?”
“I don’t know,” I said. “I mean, of course, I want to know.” Pause. “Don’t you want to know?”
“I want to know,” Julie replied quietly. “I think I already know the answer. I think I knew it when I ordered the surf and turf at dinner.”
“Yeah?”
“Yeah. So. You want to know?”
“Yeah,” I said. “Let’s find out.”
And so it happened that on Mother’s Day 1999, Julie peed on a stick and changed our lives forever.
The story behind Schuyler’s name isn’t nearly as interesting as you might think. I actually considered making something up; judging from the questions we received when she was born, you might think we just chose some random term right off the table of periodic elements. It’s not all that unusual; pronounced SKY-ler and often Americanized as Skyler or even Skylar, it’s a Dutch name meaning “scholar.” I’d like to say we chose it because we wanted to predetermine our child’s great mind (or inexplicable Dutchness?), but the truth is even less impressive.
About a month after we were married, before that fateful, peeful Mother’s Day, Julie and I went to dinner at a fancy restaurant called the Great Lakes Shipping Company. Well, it was fancy for Kalamazoo. None of the vehicles in the parking lot had snowplows attached to the front bumper, and Elvis hadn’t been sighted there just yet. We’d been given a gift certificate for a free dinner for two by Julie’s parents as a “we can’t stop this or have the groom killed so we might as well give them some food” wedding gift. It was the holiday season, we were in love, and we were hungry.
As we sat at our table, trying not to look like goobers, our waitress walked up and introduced herself. Her name was Schuyler, and she was friendly and pretty and funny. Mostly, though, she had a cool name.
“Schuyler,” said Julie as we drove home, repeating it softly. “Schuyler. I really like that name.”
And there it was.
Later, during the pregnancy, Julie decided that when the day came for us to have the sonogram and The Answer, she didn’t want to know. I, on the other hand, wanted to learn every single fact I could. I didn’t want surprises; I was scared enough as it was. On the day of the sonogram, we saw the baby but had no idea what we were looking for. I found myself squinting and thinking, “Is that a penis? Oh, surely THAT’S not a penis. . . .” After we explained that I wanted to know and Julie didn’t, the lab technician led me out into the hallway and whispered conspiratorially in my ear, as if Julie might hear from the other room.
“It’s a girl,” she said. “Congratulations.”
“Are you sure?” I asked.
“Oh, I’m pretty sure. She gave us a pretty clear shot of the goods.”
The goods. I was shocked that our baby even had goods already.
When we started talking about names, I found myself in a strange predicament. I had to consider boy names with as much seriousness as I did the girl names or I’d give away the big secret. The problem was, we both realized almost immediately that if we had a girl, we wanted to name her after a waitress. A girl was going to be Schuyler; we knew that all along.
Boy names, however, were a matter of contention, and I had to be something of a jerk about fighting the ones I didn’t like in order to protect Schuyler’s secret.
So Schuyler, if you’re reading this one day, know that your mother loved you very, very much, but if you’d been a boy, you might have been named Jasper.
The day after Julie took the test, we visited our local Planned Parenthood to take another one. We’d always been told this was a good thing to do, although really, I suspect they were using the same test we bought at the grocery store, so I suppose we could have just gone and done it again ourselves. However, there was something about having someone in doctory-looking clothes make an official proclamation (“Thou art preggers!”) that sealed the deal for us. We left the clinic through a crowd of protesters shoving horrific, bloody posters in our faces.
“We’re keeping it! Go away!” Julie shouted as we made our way to the car, waving free pamphlets at them as we passed.
The booklets were an unexpected bonus for us, containing little cartoons of our baby as she developed. I halfway expected it to have a cute name like “Cletus the Fetus,” but sadly it wasn’t the case. Still, we got some basic information, which was good since we had to wait another week and a half for Julie’s first doctor’s appointment. Ten days felt like an eternity to wait before talking to a health care professional. How did they know we weren’t going to go out and celebrate with a big bowl of crack or some thalidomide milk shakes?
I feel as if it should go without saying, assuming most men react the same way to imminent fatherhood, but I was a mess. I cried when Julie told me, and I cried the next day when I was driving to work. At one point, Julie asked me if I needed to take a pregnancy test, too. Part of the emotional overflow was the joy of impending parenthood and the miracle of new life, I’m sure, but mostly, it was pure, unblinking, soul-freezing, “boy, I sure am glad I wore my brown pants” terror. I’d seen that episode of ER, where Dr. Green tries to deliver the baby and everything goes to hell. If you saw the episode, you remember it, too.
Julie was calm and unconcerned. Like all pregnant women, she was transforming into a magical being. She’d also never see that episode of ER.
We bought a pregnancy diary. Julie wanted to have a place to record events from the experience (“Today I puked!”), but I was...

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  • PublisherSt. Martin's Griffin
  • Publication date2009
  • ISBN 10 0312538804
  • ISBN 13 9780312538804
  • BindingPaperback
  • Number of pages288
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