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Schuyler's Monster: A Father's Journey with His Wordless Daughter Hardcover – February 19, 2008

4.6 out of 5 stars 51 customer reviews

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Editorial Reviews

From Publishers Weekly

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 © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.

Review

Advance praise for Schuyler’s Monster:

“A gripping explication, shot through with equal parts horror and hope, of how parenthood can turn ordinary people into passionate advocates.” -Neal Pollack, author of Alternadad
"Robert Rummel-Hudson is brave enough to reveal the damage the discovery of his child's condition did to his marriage and to his own sense of self. He manages to repair some of the damage through close involvement with Schuyler and vigorous campaigning on her behalf. His memoir is honest, often painful and deeply personal.” -Charlotte Moore, author of George & Sam
“The book is engaging and honest--I'm sure it will help many parents who are struggling to find the most loving way to help their children who have ‘issues.’” -Dana Buchman, designer, author of A Special Education
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Product Details

  • Hardcover: 288 pages
  • Publisher: St. Martin's Press; 1St Edition edition (February 19, 2008)
  • Language: English
  • ISBN-10: 0312372426
  • ISBN-13: 978-0312372422
  • Product Dimensions: 6.1 x 1.1 x 8.1 inches
  • Shipping Weight: 13.6 ounces
  • Average Customer Review: 4.6 out of 5 stars  See all reviews (51 customer reviews)
  • Amazon Best Sellers Rank: #474,989 in Books (See Top 100 in Books)

Customer Reviews

Top Customer Reviews

By Rachel Kramer Bussel VINE VOICE on February 19, 2008
Format: Hardcover
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.
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Format: Paperback
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.
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Format: Hardcover Verified Purchase
I was instantly intrigued by this title as a pediatric SLP. Rummel-Hudson was honest about the frustrations I'm sure many of our parents feel going through the system, yet he did it in a way that didn't immediately put me on the defensive. Perhaps I felt beleaguered in getting through it because of my profession or perhaps it was the quality of the writing, but I felt that the pace of the book was very, very slow to get through. I found that I read it in chunks spread apart by months rather than in one short time frame. It is one of the most real depictions of the unknowns families face in the first 3-6 years of raising a child with special needs I've seen, but is also unnecessarily delves into other aspects of the author's life that, while likely important to his personal journey, didn't interest me the reader.
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Format: Hardcover
As a long time blog reader of Rob's, I had been looking forward to the book since it was announced. I was not disappointed. The magic of Rob's blog and his book is that he isn't afraid to be human. He opens a window into his and Schuyler's life. You share in the moments of despair and the moments of triumph. I am a voracious reader and biography/non-fiction is my favorite genre - this is one of the most excellent books I've read in years. The very best part? If you read his blog, you get to read along and find out what happens after the book ends.
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Format: Paperback
I am the mother of a child with multiple disabilities and one of the ways I cope with that harsh reality is by reading memoirs by other parents living a similar life. It doesn't matter what the specific disabilities are; children with special needs have parents who all experience similar feelings. In spite of the BS I hear frequently from others ("Oh, you must be such a wonderful mother for God to have given you a special child, because I know that *I* could never have handled it."), caring for a disabled child is DIFFICULT. Yes, my son brings out the very best in me - strength, patience, love, and so much more. But he has also taught me about the worst in me - the ugly feelings that we all try so hard to keep private and hidden, so much so that we all think we're completely alone with those feelings.

That's what I love best about Rummel-Hudson's memoir: he doesn't hide from the ugliness. This is not a book about Schuyler, but about the author's struggle to wrap his brain around his daughter's differences, to advocate for her with the medical and educational professionals that hold the keys to the services she needs (any special needs parent can understand what a big job that is!), and to work through his own dark depressions to be the father that his child needs. Of course, as anyone whose read the book knows, Rummel-Hudson doesn't need to tell Schuyler's story for her; soon enough she'll tell the world herself. Warmed by affection we've gained vicariously through her father, we'll all be eager to hear from her.

Thank you, Robert, for having the guts to write such an intimate book. It's vitally important that those of us whose kids are disabled tell each other the truth, because we all know that we can't count on getting it from our kids' doctors, therapists, and teachers.
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