Schuyler's Monster: A Father's Journey With His Wordless Daughter

I have always imagined the acceptance process of discovering your biological child has differences, like Schuyler's monster, would be incredibly difficult. Rob did an amazing job of bringing the reader through his varying stages of grief and non-acceptance. What I love about this book and his parenting, is that he never accepts that Schuyler's disability defines her. He does an excellent job capturing that only Schuyler can define who she will be. I "met" Rob on twitter and, like his blog readers, fell in love with his daughter's gigantic personality. I hope there is a sequel. Or series.

Summary: Schuyler Rummel-Hudson (pronounced SKY-ler, thankyouverymuch) is a young girl who was born without the ability to speak. The "Monster" of the title is Bilateral Perisylan Polymicrogyria, a rare congenital brain defect whose symptoms vary, but in Schuyler's case, leaves her unable to produce sounds other than vowels. This book tells the story of this monster and of its diagnosis, but mainly of how it has affected the lives of their family, through depression, infidelity, several cross-country moves, heartbreak, fighting with doctors and school administrators over what's best for their child, and of the generosity of hundreds of readers of Rob's blog, and how they raised the money to buy Schuyler a Big Box of Words, so that this show more spirited, unique little girl could finally have a voice of her own.

Review: I will admit from the get-go that I am not the most impartial person to review this book. I discovered Rob's blog in early April 2005, no doubt linked from some other website that was trying to help raise money for the BBoW. I remember very clearly spending the entire weekend reading through the archives and crying, crying over the heartbreak of Schuyler's situation, but also over the beautiful language in which Rob expressed it. At the end of it, I donated some money (not much, maybe $25 or so, but I wished I could give more), and sent the link to everyone I knew. (Note: first time I've ever been thanked, albeit en masse, in the acknowledgements of a book. Cool.) Anyways, I've followed Rob's blog since then, so the basic "plot" of the book was already pretty familiar to me.

Another reason that I am absolutely a biased reviewer is that I am a stone-cold sucker for any kind of daddy-daughter emotional moment. I'm not a particular crier, but daddy-daughter stuff doesn't even have to be good, it can be treacly and emotionally manipulative (see: end of Armageddon), and I will be bawling like an idiot. But in this case, not only is this book packed with - in fact, entirely on the subject of - the daddy-daughter relationship, it's actually good. Well-written, totally heartwrenching, brutally honest and introspective, and smart-assedly funny enough to make you smile through it all (on the subject of cutting the umbilical cord: "the primary reason I didn't go for the idea was simple. I didn't think I could resist the urge to pretend I was the mayor of Baby Town, with a big tall hat, a red sash and oversized scissors, ceremonially opening a new mall.") I can't say exactly how a new reader will react to this book, since I already knew the story and was already charmed by Schuyler and crazy about Rob's writing from years of reading his blog, but I was deeply moved by this book, and I suspect my reaction will not be abnormal. 4.5 out of 5 stars.

Recommendation: Of highest interest to parents, particularly to parents of "special needs" kids, but even so, I think anyone who likes their memoirs with a touch of sarcasm, a liberal dose of heartbreak, and an ending that leaves them full of hope would do well to check this one out. show less

"Schuyler's Monster" is an honest, funny, and heart-wrenching account of a family, and particularly a little girl, who won't give up. More than the story of a parent dealing with a child's disability, this is the tale of a little girl who silently teaches a man filled with self-doubt how to be the father she needs.

I've been reading the author's blog since about the time Schuyler was born. In that blog, Rob Rummel-Hudson recounted many of the same events as are in this memoir, as they happened. He didn't, however, look back and tie them all together into a coherent narrative, as he has done in this memoir. Nor did he discuss his wife Julie's role the way he is able to in this book in which he documents the first six years or so of Schuyler's life and the journey to finding the tools she needed to thrive despite the "monster" that inhabits her "broken" brain. This monster, a rare disorder, makes speech through her own voice impossible for her and signing language also a challenge. Ultimately, her parents come to find a device they nickname the Big show more Box of Words which enables Schuyler to begin better communicating with the outside world. It's the story of Rob's fierce love for his daughter, and his and his wife's trials in making sure Schuyler gets the best treatment to allow her to evolve and thrive. It's inspirational while remaining fully grounded in reality. show less

This is a story of loving (and all too human) parents, and an extraordinary child. Rarely do you find a child who has special need described with such humor. There is always love, just as there was in this story, but humor and honesty and passion have equal roles.

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 show more 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. show less

As a long time reading of Robert Rummel-Hudson's various blogs, I was fairly familiar with his daughter's story. His portraits of Schuyler revealed an other worldly child who seemed to be more than the challenges that were facing her. That sense is retained here, as is the overwhelming evidence of a father's deep, transformative love of his daughter. It was interesting to see the story of fatherhood retold from now, with the knowledge of the monster, and the bits of hope that eventual do come. It all leaves me with a continuing interest to see what kind of person Schuyler will become, and a certainty that though she will always have her monster, that will never be all that she has.

I just finished reading Schuyler's Monster - one of the finest books I've ever read. The book is Robert Rummel-Hudson’s account of his young daughter’s life and his relationship with her. Schuyler was born with a disability that has hindered her ability to speak and Rummel-Hudson documents what every special needs parent knows all too well – grieving at the loss of a “perfect” child, well meaning but impersonal medical professionals, lack of information and resources and the feeling of being alone. Moreover, the book examines faith and asks the basic question, “How can a caring God do this to an innocent child?”

One of the amazing things about this book is Rummel-Hudson’s ever growing love for his daughter. Their story show more will make you laugh at times and cry at others.

This book is a must read for everyone. Parents of neurotypical children should read it to understand what it is like to be a parent of a special needs child. Special needs parents will enjoy knowing that they are not alone and their feelings of inadequacy are quite normal. Most importantly, every medical professional and educator should read Schuyler’s Monster to learn the challenges of being a special needs parent. show less