The monster in this heartfelt memoir is polymicrogyria, an extremely rare brain malformation that, in the case of Rummel-Hudson's daughter Schuyler, has completely impaired her ability to speak. During her first three years, as her parents seek to find out what hidden "monster" is causing her wordlessness, they endure "two years of questions and tests and at least one unsatisfactory diagnosis." But while Rummel-Hudson initially rages at God for giving Schuyler "a life that would never ever be what we'd imagined it to be," his depiction of her next four years becomes a study not only in Schuyler's vivacious and resilient personality, but also in the redeeming power of understanding and a "stupid blind father's love." As he describes how Schuyler eagerly takes to various forms of communication, such as basic sign language and an alternative and augmentative communication device that provides whole words she can type to express her thoughts, Rummel-Hudson effectively and compassionately shows how the "gentle strangeness about her, like a visitor from some realm where no one spoke but everyone laughed," leads him to understand that "she was the one teaching me how to make my way in this new world." (Feb.)Copyright 2007 Reed Business Information
Schuyler's Monster: A Father's Journey with His Wordless Daughterby Robert Rummel-Hudson
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… See more details below
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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Read an Excerpt
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. 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 completely sold on the journal because for every day of the pregnancy, it had a little blurb telling you how your child was developing, along with little artistic renderings of the happy fetus. This book told me, for example, that a week later, our child (whom we were calling the Grub, because we were filled with love) was now approximately the size and general appearance of a Gummy Bear. It had a tiny little brain nubbin and could respond to stimuli, presumably by wriggling like bait. I figured it was boring in there, so I gave Julie’s belly a poke every so often, just to give the Grub something to do.
The Grub also had tiny little nubs that would eventually turn into arms and legs, and tiny little ankles and knees were beginning to form, as well as toes. Who knew we get toes before we get feet? Best of all, she had nipples. I had no idea nipples occurred so soon, inasmuch as I’d considered the matter at all. I guess I assumed they would be one of the last things to form, sort of a biological “Inspected by Number 12” stamp bestowed on her before she tumbled into a waiting world.
Even as we prepared to see a doctor for the first time, we knew Kalamazoo wasn’t going to work out. We’d ended up there because Julie was a music major at Western Michigan University; I’d moved from Texas because I hated long-distance relationships and didn’t care much for Texas at that point, either. I’d worked in computers in Texas, but honestly, I wasn’t very good at it and didn’t love my work. When I got to Kalamazoo, I got some work teaching trombone lessons, and I got a job as the classical music guy at the local Barnes & Noble, in the music department. Shortly after I started working at B&N, Julie also got a job there. She started off in the café, but being the overachiever she was, she quickly moved up and became a bookseller. By the time we got married and found out we were having a baby, we were both primed to move into management positions. Advancement wasn’t likely to happen in Kalamazoo, but in the Detroit area, there were jobs aplenty. Not only that, Julie’s family lived in the area, and what better place to have a child than in the loving embrace of your family?
Detroit is our setting, or more accurately, the suburbs of Detroit. It was only a few weeks later that we arrived at our new place in Fraser, Michigan. If Eminem lived a life of trouble and heartbreak on Eight Mile Road (and did he, really? Our dentist’s office was on Eight Mile; it never struck me as particularly ghetto, although admittedly I was usually doped up on Novocain and nitrous oxide when I was there), our lives on Thirteen Mile Road were something less than film worthy. We did see a prostitute walking up to the drive-through window at Taco Bell once, but she wasn’t turning tricks. Even hookers need a bean burrito now and again. In retrospect, it probably wasn’t the best environment in which to bring a new baby, but we knew almost from the beginning we weren’t destined to stay there long.
We’d been hired as managers at the two Barnes & Noble stores in Bloomfield Hills, Julie as a community relations manager in one and me as the music manager in the other. I was nervous about my first manager position, and the situation at the store didn’t help. My new store manager informed me that one of my predecessors had been marched out of the store in handcuffs. While this might have lowered the bar as far as expectations for my job performance were concerned, it nevertheless made for an uncomfortable transition. Still, it wasn’t the Mars mission. I sold CDs to rich suburbanites and hired teenagers and retirees to do the same. I built up a large and impressive selection of classical music, which no one ever bought. Once I even lectured a famous jazz musician about another famous jazz musician because I didn’t recognize him. (I probably shouldn’t say who it was, but his initials were Earl Klugh.) In a particularly brilliant move, I chased a shoplifter out of the store and down the block, treating the clientele of the Big Boy restaurant next door to a show. “Look, honey! That fat man is chasing a young, fit teenager!” And I waited for our baby.
According to the pregnancy journal, the Grub was now entering a phase where she resembled an exercise in Mister Potatoheadedness. It was a time for lots of add-ons. Nostrils and a tiny little nose, eyelids, the beginnings of elbows and a tongue were all popping up. Her eyes and ears were also appearing, but not where I might have expected. The ears started off near the bottom of her head, and the eyes weren’t peering forward but were located on the sides of her head. (“Much like a rabbit,” said the journal cheerfully, as if the idea of having Rabbit Head Baby didn’t make Daddy want to drive straight to one of Detroit’s many drive-through liquor stores.)
In the midst of all this change, our baby’s brain would very soon begin to form in earnest, with the tiny ridges that would make it look, well, brainy. It would be then, in these early days of development, before we’d even heard her heartbeat, that Schuyler’s monster would be born.
Detroit was problematic. I can’t be the first person who ever wrote those words.
It wasn’t really the city as such. Growing up in Texas, I’d always imagined Detroit as a sort of urban demilitarized zone. I half expected to see burning tires on the street corners when I pulled into town, but honestly, it was just another big, nondescript midwestern city. I never really got a sense of what Detroit was trying to be, but to us, it was a large, somewhat dirty and grumpy but otherwise nonthreatening place we inexplicably found ourselves occupying after three years in hip, weird little Kalamazoo. I wish I could give a better description of Detroit, but honestly, all I really remember about the city itself is bad traffic and dirty snow.
The people, on the other hand, left an impression. I remember our fellow downstairs neighbors in our little apartment building, a surly clan with vaguely Old World accents who stared unblinkingly at us every time we left the apartment or came home. They never became accustomed to us; they watched us from the moment we stepped out of our cars to the instant we shut the apartment door. They argued loudly and incomprehensibly, and their improbably gigantic television was elevated just high enough in their bedroom overlooking the parking lot that we could see what they were watching as we walked past the window at night. It was like living next to a drive-in movie theater. One night, they were watching porn. We snickered like teenagers as we walked underneath a giant blow job.
One day we came home to find a pair of baby mittens hanging on the door, with a note saying simply “Congratulations.” They noticed us, and I guess they wanted to contribute something to our lives. Something besides free porn.
Our jobs were fine. Really. We kept telling ourselves this. There was obviously going to be a period of transition in any situation, but the people we served at our bookstores were so different from what we were accustomed to back in Kalamazoo. For all its quirks, Kalamazoo had a very savvy music clientele. In Bloomfield Hills, I had a customer complain because a full-price CD he was looking at only had four songs on it. It was Beethoven’s Ninth Symphony.
One hot night in late August, I was driving home from work when I found myself caught up in a police chase. One minute I was toodling along; the next, I was surrounded by screaming sirens and flashing lights. Even in my little Volkswagen, I felt huge and lumbery, like the one adult in a room full of playing children. Minutes after the whole crime show parade was gone, I was still a little shaken. I was no small town yokel, but I wasn’t dealing well with Detroit.
Excerpted from Schuyler’s Monster by Robert Rummel-Hudson.
Copyright © 2008 by Robert Rummel-Hudson.
Published in February 2008 by St. Martin’s Press.
All rights reserved. This work is protected under copyright laws and reproduction is strictly prohibited. Permission to reproduce the material in any manner or medium must be secured from the Publisher.
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I picked up this book because my son has polymicrogyria (PMG)- the same brain malformation that the author's daughter has. The book gives good insight and encouragement to parents with children with disabilites. It stresses the importance of parents to stand-up for their child and get all possible available help for their child in the school system and beyond. Basically said, fight to the end for you child. My complaint about this book is that the author spends so much time with the poor me attitude and blames his infidelity on the stress of his daughter having PMG. I, having a child with disabilties, fully understands that life can be very stressfull and is very different than raising a "normal child", but that does not excuse his poor attitude and actions. I also do not like calling PMG a "monster". PMG is not a "monster"- it is part of who each child is that has this brain malformation.
Intrigued by the title and curious about a "wordless daughter", I journeyed with Robert Rummel-Hudson through Schuyler's life thus far with sympathy, surprise and a renewed appreciation for the parents of special children. The book is informative about a rare brain malformation that produces a not-so-rare speech problem. In a world that takes for granted the internet, I-phones, and all the other electronic toys we have, it is not surprising that a computer can help the wordless to speak again. I plan to use this book in my women's book group, and highly recommend it to anyone who has children, knows children, or was a child...that's pretty much everyone. Read, enjoy and learn a new appreciation of parental love.