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.
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 2007 Reed Business Information