Synopses & Reviews
Schuylers 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 cant 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 couldnt speak, they needed to determine how to help her learn. They didnt know that Schuyler was going to teach them a thing or two about fearlessness, tenacity, and joy.
Schuylers Monster is more than the memoir of a parent dealing with a childs 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 childs 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.
"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.'" Publishers Weekly (Copyright Reed Business Information, Inc.)
Advance praise for Schuylers 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
“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: One Family's Journey Through the Maze of Learning Disabilities
“Rummel-Hudsons memoir offers a moving account of his and wife Julies unrelenting efforts to give their buoyant little girl a way to communicate.” - People magazine
“Relating the battle for his exceptional daughter with nimble wit, ardor and considerable descriptive ability, Rummel-Hudson has evolved from blogger to author.” - Kirkus
“…A study not only in Schuylers vivacious and resilient personality, but also in the redeeming power of understanding…” - Publishers Weekly
“This memoir, full of fear and rage and disappointment and acceptance and advocacy and ferocious love, offers plenty of touchstones for parents who have dealt with diagnoses that are infuriatingly wrong or frighteningly right….” - Terri Mauro, author of The Everything Parents Guide to Sensory Integration Disorder
“Rummel-Hudson chronicles, with disarming frankness, the experience of parenting a child no one knows how to help.” - Brain, Child
“…This story will both compel and inspire readers on their own self-journey.” - Texas Family magazine
“We all play the hand that we are dealt in life. Knowing that there are many people like Robert, Julie and Schuyler who play their difficult hand with grit, tenacity and love makes this world a much better place in which to live.” - The Citizen, Auburn, New York
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 couldnt 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 childs disability, Schuylers Monster is a tale of a little girl who silently teaches a man filled with self-doubt how to be the father she needs.
About the Author
Robert Rummel-Hudson has been writing online since 1995. During that time, his work has been recognized by the Diarist Awards at diarist.net, including citations for Best Writing (1999 Q4), Best Overall Journal (2000 Q1), Best Account of a Public or News Event (2001 Q2, on the execution of Timothy McVeigh), Best Dramatic Entry (2002 Q3), and the Legacy Hall of Fame Award (2004 Q4). He has served as a featured panelist at JournalCon, an annual conference for online writers, in 2001, 2003 and 2004. His online writing has been featured in articles in the Austin Chronicle (August 2000), the Irish Times (summer 2003) and the New Haven Register (April 2003).
Robert and his family currently live in Plano, Texas, where Schuyler attends a special class for children who use Augmentative Alternative Communication devices. Much of her days are now spent in mainstream classes with neurotypical children her age.
Reading Group Guide
In the central metaphor of the book, the author refers to Schyuler's condition, polymicrogyria, as a "monster" to be fought. Why is this an appropriate metaphor? What other metaphors might the author have chosen? According to the author, Schuyler also has an affinity for monsters as her friends and allies. What does this tell you about Schuyler? The author talks about language of special-needs parenting as being "sugar-coated terminology" that functions as a "distraction and a false comfort." He prefers to refer to Schuyler as "broken." Why does he use this term? Do you agree or disagree with his decision? The story is broken into three acts, each with an underlying stylistic difference. What are those differences, and what do you think is the rationale behind this structure? Some have read Schuyler's Monster as a "prodigal son returns" exploration of faith, and others have read it as a progression through different degrees of skepticism. What do you think about the author's evolving relationship with God? What role do you think God plays in Schuyler's story? The author talks about the role of the "internet village" in Schuyler's story. If you agree that "it takes a village to raise a child," do you agree that this village can be virtual? How would you or could you participate in this village? Schuyler's condition is unique, placing her in a middle ground between a mainstream classroom for neurotypical students and a classroom serving more severely disabled children. What approach do you think the public school system should take when it comes to Schuyler, and other children like her? Robert and Julie deal with infidelity on both sides of their marriage, and ultimately decide to stay together. What explanation does the author give for the infidelity, and what are the reasons for their ultimate decision? Do you agree or disagree with this outcome? The author makes a case for maintaining an open mind when it comes to people with disabilities. What is your reaction upon seeing or interacting with a disabled person? Does this change if their disability is not immediately apparent? Why do you think these types of interactions typically make people uncomfortable? Is this discomfort necessarily a bad thing? The book ends shortly after Schuyler's seventh birthday with her future options wide open, thanks to her new school and her "big box of words." What do you think her future holds? If she were to write a sequel to this book in twenty years, what do you think Schuyler might have to say, both about her father and her life before and after the events in the book?