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Schuyler's Monster: A Father's Journey with His Wordless Daughter Hardcover – February 19, 2008
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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.
“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
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Top Customer Reviews
I work with children who have special needs. Even though none of them have the same diagnosis as Schuyler, some of the obstacles they face are the same. The most difficult, is always communication. It is what the parents want the most, the children need badly and what is all too often not given enough attention.
This is a story of Schuyler's life, from conception to present day, more or less. The reader learns all about the world she developed in and how she began to grow. We learn what Mom and Dad are like, and how they learned along with their daughter what she needed to be happy and purposeful.
I wish that more of the parents had the gumption of these two, instead of sitting in IEPs and just going with the flow. I wish that more use was made of these communication devices, and not just 10 or 20 minutes during the day. I would like to give a copy of this book to every single family in our school.
( Things would really start hitting the fan, then!)
Well done Schuyler's daddy...! Good job Schuyler's mom. Keep up the good work, because I am sure that there will be more beneficiaries from it than just your amazing little girl.
I highly recommend this book to anyone who has a child, and anyone who does not. I particularly recommend this book to anyone who works with or runs schools for special needs children...or typical children. You are the ones who need to learn to reach for the stars.
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.