A Father's Journey with His Wordless Daughter
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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.
Publishers Weekly Review
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Just Read It!
Reading "Schuyler's Monster" was like looking in a mirror. As the parent of a child with a rare brain malformation, reading the experience of another family going through a similar ordeal was so gratifying. Everything from diagnosis to the IEP process remained true to life and informative. The experience of reading about Schuyler herself makes this book worth at least double the asking price!
As the father of a disabled daughter with a rare genetic disorder I loved how this book was from 'Daddy's' perspective. It made me cry a number of times...especially the letter to Schuyler! Medical condition differences aside, every part of this book hit home...the unanswered questions searching for a dignosis...the frustration with doctors and schools...the feelings of simultaneous joy and helplessness...and the personal struggles as well. ABSOLUTELY worth the read!,,
My granddaughter Aisllyn was recently diagnosed with polymicrogyria after many attempts by my daughter to get questions answered by her pediatrician about Aisllyn's inability to use her left arm or leg and not meeting any of her milestones in her 1st year. Aisllyn is almost 16 months old now and working with PT and OT with noticeable improvements. This wonderful book has given my daughter and myself hope and a belief that Aisllyn will excel. Thank you Rob, Julie, and Schuyler for a journey into this scary world! You have given us an amazing outlook as to what is possible with love, dedication, and the determination to give Schuyler the tools she needed to be successful! Thank you for this book and I wish you all the love and peace to continue to touch lives!
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