Schuyler's Monster: A Father's Journey with His Wordless Daughter [Hardcover]

Robert Rummel-Hudson (Author)

Book Description

Release date: February 19, 2008

Schuyler’s Monster is an honest, funny, and heart-wrenching story of a family, and particularly a little girl, who won't give up when faced with a monster that steals her voice but can’t crush her spirit.
When Schuyler was 18 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 caused by a malformation of the brain.), her parents were given a name for the monster that had been stalking them from doctor visit to doctor visit and throughout the search for the correct answer to Schuyler's mystery. Once they knew why she couldn’t speak, they needed to determine how to help her learn. They didn’t know that Schuyler was going to teach them a thing or two about fearlessness, tenacity, and joy.

Schuyler’s Monster is more than the memoir of a parent dealing with a child’s disability.  It is the story of the relationship between a unique and ethereal little girl floating through the world without words, and her earthbound father who struggles with whether or not he is the right dad for the job.  It is the story of a family seeking answers to a child’s dilemma, but it is also a chronicle of their unique relationships, formed without traditional language against the expectations of a doubting world.  It is a story that has equal measure of laughter and tears. Ultimately, it is the tale of a little girl who silently teaches a man filled with self-doubt how to be the father she needs. Schuyler can now communicate through assistive technology, and continues to be the source of her father's inspiration, literary and otherwise.

 

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.)
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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

See all Editorial Reviews

Product Details

• Hardcover: 288 pages
• Publisher: St. Martin's Press; First Edition edition (February 19, 2008)
• Language: English
• ISBN-10: 0312372426
• ISBN-13: 978-0312372422
• Product Dimensions: 5.5 x 1 x 8.3 inches
• Shipping Weight: 13.6 ounces
• Average Customer Review: 4.7 out of 5 stars  See all reviews (38 customer reviews)
• Amazon Best Sellers Rank: #867,806 in Books (See Top 100 in Books)

More About the Author

Robert Rummel-Hudson spent his early years in Texas. He grew up in the West Texas oil town of Odessa, and attended college at the University of Texas at Arlington, studying music and English. During that time, he worked as a professional freelance trombonist and music instructor.

At the age of twenty-nine, he left it all behind and moved to Kalamazoo, Michigan to marry Julie Rummel. A year later, they had a daughter, Schuyler Noelle, and moved to New Haven, Connecticut to work for Yale University.

It was at Yale that Schuyler was diagnosed with Bilateral Perisylvian Polymicrogyria, a rare neurological condition that left her unable to speak. For the next few years, Robert used his online journal and blog to chronicle Schuyler's fight for a normal life, and also his transformation to become, against all his flaws and self-doubts, a good father and fierce advocate for a unique little girl.

Robert Rummel-Hudson now lives with Julie and Schuyler in the north Dallas suburb of Plano, Texas, where Schuyler attends a special class for children who use Alternative and Augmentative Communication devices. She also attends regular fourth grade classes for a good part of her day, and is working towards transitioning to a mainstream education in the coming years.

Most Helpful Customer Reviews

36 of 40 people found the following review helpful

5.0 out of 5 stars A Father's Love, A Daughter's Struggle, and New Ways of Communicating February 19, 2008

By Rachel Kramer Bussel VINE™ VOICE

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....

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. Read more ›

6 of 6 people found the following review helpful

5.0 out of 5 stars A Father's Fight to Slay His Daughter's Monster March 9, 2011

By lit-in-the-last-frontier

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....

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. Read more ›

11 of 14 people found the following review helpful

5.0 out of 5 stars What a wonderful book February 25, 2008

By tashina

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.

4 of 5 people found the following review helpful

5.0 out of 5 stars The Art of Losing: September 3, 2009

By Amylia Grace

Format:Paperback

Schuyler's Monster is, in the author's own words, a love-letter to his daughter. If that's true, then this is one spectacular letter! Written with and about the understated beauty of words (and moving beyond them), it is also a testament to the unconditional love that comes when one surrenders their illusions and faces the sobering truth that our life and those in it are far from perfect and sometimes, in fact, even broken. Still, we going on loving them. Even more so. While labeled under "parenting" and medical conditions, such labels sell the book short. This memoir goes beyond diagnosis and recovery by not skipping over the murky terrain surrounding it. We laugh and cry along with Rob and his family, and are entertained and touched in ways both surprising and lasting. As a writer, Rummel-Hudson first won me over with his punchy sentences and verbal acuity, rendering powerful language both beautiful and biting. (It's ironic how a man so blessed with a gift for words ends up being saved by his little girl who doesn't, at first, have any.) What Schulyer loses in words, however, she makes up for in spirit and courage. Her infectious squeals and laughs can be heard throughout the book and it's all you can do not to hug whomever or whatever is next to you just to have an outlet for the joy she brings into your life even as a mere spectator.

Still, though the "cast of characters" is engaging and fun(ny), what impressed me about the book was not only how well written it was and how easily one could be brought to care and relate to the struggles against such an obscure brain disorder, but the candor with which Hudson offers us his story. What we get is an almost unflinching glimpse into an imperfect life filled with Rummel-Hudson's signature tender-hearted tenacity of spirit.... Despite his humor, however, often this is no light-hearted read. There is much heart and humor in these pages, but it's sobering, too. Life is hard. We lose things too easily. Things we loved. Things we want to hold on to. Other things we keep though we'd rather give them up. Things we thought were ours. Things we never really had. Having read it three times now, there are moments that call up in me those lovely Leonard Cohen lines, "Ring the bells that still can ring/Forget your perfect offering/there's a crack in everything/that's how the light gets in." "Schulyer's Monster" is a testament to how the cracked and broken still let their light shine brightly, and in the process, become whole again. Read more ›