Schuyler's Monster: A Father's Journey with His Wordless Daughterby Robert Rummel-Hudson
Pub. Date: 02/19/2008
Publisher: St. Martin's Press
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
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.
- St. Martin's Press
- Publication date:
- Edition description:
- First Edition
- Product dimensions:
- 8.44(w) x 5.64(h) x 1.16(d)
Table of Contents
A Monster Hiding
When I Grow Up 23
A Joyful Kind of Chaos 33
The Saddest Place in the World 62
The Holland Thing 72
"Nothing Makes Us So Lonely as Our Secrets" 88
The Answer That Was False, and the Answer That Was True 102
A Monster Revealed
Hard Times Give Me Your Open Arms 126
Schuylerese for Beginners 140
To the Mountaintop 151
Bug Fairy 162
Note to Schuyler, Christmas 2004 167
Fighting Monsters with Rubber Swords 170
The Island 186
A Monster Challenged
The Village 200
A Big Box of Words 221
Box Class 241
About the Author 275
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Schuyler's Monster is not some phantom conjured by a child and reported to live in her closet. Her Monster is real, a genetic abhoration, residing in the very structure of her brain tissue, invisible to all save the MRI machine. The monster is invisible; Schuyler is silent. I was very excited to read this book, as I too have a wordless daughter. In the beginning I was disappointed because it felt like it was Robert's autobiography and not Schuyler's story, and to some extent that feeling carried through for the first half of the book. As I pondered the book after finishing it a couple of thoughts combined to bring this book up from a three star rating to a five. First, I thought a lot about my impatience with the author telling his story. As the parent of a severely handicapped child, I wasn't interested in the father's frustrations and emotional roller coaster. If I am completely honest, I felt just a bit of exasperation with him for not focusing on all the things that his daughter could do. As opposed to, say, my daughter. However, as I mulled things over, several things became clear to me. The average reader does not have a daughter like his Schuyler or my Winter, and would, therefore, have no idea that a train wreck in slow motion is a pretty good metaphor for how your life, as the parent, can feel as you try to keep your child on the track. And the more I read about Robert the more I realized how eloquently he managed to express, without ever losing his sense of humor or poignancy, how one survives this kind of a life altering challenge. I identified so completely with his struggle, and that proves what a beautiful job he did in conveying the reality of our lives to someone who doesn't live it every day. While my daughter has more medical problems and requires much more physical care than Schuyler, Robert's set of challenges are no less draining; they are just different. I have always been profoundly grateful that my daughter is too "broken" (to use Robert's word) to realize how badly she is being cheated out of a full life experience. Schuyler is a very bright little lady who simply can not speak and has some other slight physical delays. She knows just how different she is, and her parents carry that added pain of being unable to hide that knowledge from her. Robert's battle for acceptable schooling and assistive technology for his daughter is awe inspiring. Beyond a certain point, it became readily apparent that my Winter had reached the summit of her potential and that no amount of medical and therapeutic intervention would ever let her sit, stand, communicate, or a whole plethora of other things. Robert and Julie knew how intelligent their daughter was and knew how much potential she had if they could only find the tools needed to open the floodgates. They have never had the luxury of feeling that they have fought the fight and the battle is won. For them it will be ongoing for as long as Schuyler lives. By the end of the book, I loved Schuyler. Not in some namby-pamby, gosh what a great little kid kind of way, either. I loved her in an emotionally bonded, heart breaking fashion that surprised me. And I knew in that moment of realization that Robert Rummel-Hudson had crafted a mesmerizing tribute.
First, the writing. Many blogketeers today have a disregard for proper English. I approached this book with reserve, knowing the author had achieved an audience as a blogger. I was astonished at how cohesive the work is put together and how elegant Rummel-Hudson's prose is delivered. ['...I was left with the music, and I belately began to understand the soul of the sound world in which I had been living as a tourist for so many years.' Next, the story. This is two stories in one: his daughter's and his own. All parents have part of their own parents in themselves and it was wise 'and brave' for the author to so candidly display his parents and his own shortcomings before moving to the next generation - gentle Schuyler, who I dare any reader not to love. He and his wife are tested to provide the best possible schools, medical expertise and nurturing for their extraordinary daughter - while reveling in her uniqueness. In the end, I wanted to get on the floor and play dinosaurs with my own daughter and soak up the spirit of a child in much the way Rummel-Hudson seems to do. You will not be disappointed by this memorable, tender story.
As a 13 year old girl, reading this book made me realize a bunch of things at such a young age. From reading Schuyler's Monster, it taught some valuable and important lessons. That is, honesty may hurt but it's the truth, it's better than lieing and making a family lose hope and faith. Schuyler's Monster is basically about a little girl named Schuyler who has this disease. The father, Robert Rummel-Husdon doesn't think he is fit for the job as a father but Schuyler teaches him that he is. This book opened up to me in so many ways and i would defiantly recommend it. The only hard part i had with this book was such the big and hard words but otherwise i would defiantly recommend this book for like people who are older than my age.
In Schuyler's Monster, Robert Rummel-Hudson tells a story of coming to terms with, while constantly battling, what he calls his daughter's 'monster,' a disease called polymicrogyria which leaves her unable to talk. She can make some sounds, using mostly vowels, and it's not until age 4 that the author and his wife even find out precisely what is wrong with her. In this incredibly heartfelt memoir, Rummel-Hudson recounts their journey from parents to 'special needs' parents, navigating school systems in Connecticut and Texas in their quest to get Schuyler the best care and help she can provide. At times, their story is bleak, but throughout it, Rummel- Hudson's overwhelming love for his daughter, as well as his belief in her, is clear. Even when things seem at their worst, the couple never let their daughter sense their doubts about her being 'broken,' as Rummel-Hudson writes. Even though he uses this terminology for her and her brain, on a certain level, he seems to know that for whatever mysterious reasons 'his battles with faith and a god he doesn't quite believe in are covered in the book', Schuyler has turned out the way she has. Some of the best moments are focused solely on Schuyler. She is a 'rock star' amongst her young classmates, in various schools, looking the part with purple or red hair and pink leopard print, and drawing her peers around her. When she stands up to 'and punches' a bully at a mall playground who's just shoved her and teased her for being a 'retard,' it's hard for even those of us who are as nonviolent as they come to cheer. Rummel-Hudson, who has been documenting his life, and his daughter's, on his blog for many years, thankfully doesn't bring the blog into play too much in the book, save to show how wide of a support network he's garnered. When Schuyler's school refuses to purchases the $10,000 'Big Box of Words,' a communications device that enables her to type on its screen and have her words voiced by the box, his readers pull together with donations to make the purchase. By the end of the book, when Schuyler and family are ensconced in Plano, Texas, land of megachurches and wealth 'and decidedly not a typical home for the Rummel-Hudsons', I felt like I knew this little girl who I've never met. Her spirit permeates each page, though Rummel-Hudson is clear that he is telling his story of being a father unable to permanently fix everything that is 'wrong' with his daughter. His guilt, anger, and grief are plain, but it's also his and his wife's perseverance, in not accepting the status quo, that have helped Schuyler get to the place she has, using her words in all kinds of fascinating ways. In some ways, even though Schuyler's Monster is about a very specific, rare disorder, it's also about being a parent. Rummel-Hudson and his wife learn early on that they cannot protect Schuyler from all the negatives of the world, but they also learn that for her, things aren't as bad as they may seem. She has found her own language and way of relating to people, both before and after acquiring her Big Box of Words, that works for her, and watching her develop, in the words of her father, is the real delight of this book. With sly sarcasm and a healthy dose of self- deprecation, but most of all, love, Rummel-Hudson has written a memoir I wouldn't say is sappy at all, but did make me cry, though not until the very end, and those were tears of happiness.
I found this book at a Goodwill, not knowing anything about it ... As I began to read, I was amused by the author's sense of humor. But after a few dozen pages, it began to be apparent that there was nothing wrong with the little girl except she couldn't pronounce vowels. An ENTIRE BOOK dedicated to the "ups and downs" of living with a little girl who cannot pronounce vowels. At page 171, I just couldn't go on reading about this little girl who apparently stopped the worlds of both of her parents by not being able to speak. You'd think she had a terminal illness. I bothered to watch two videos of Schuyler on youtube to see how bad off she was/is ... the videos were ridiculous. So much footage and of what?! One very spoiled little girl obviously accustomed to everything around her also being ABOUT her. I wonder how much more her father can possibly write about her not being able to say vowels. I'm guessing two or three more 300+ page books.