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

door Robert Rummel-Hudson

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13915196,639 (4.06)9
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 couldn't 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 child's disability, Schuyler's Monster is a tale of a little girl who silently teaches a man filled with self-doubt how to be the father she needs.… (meer)
  1. 00
    Petite Anglaise een leven, een liefde, een weblog door Catherine Sanderson (Anonieme gebruiker)
    Anonieme gebruiker: Both blogs to books, memoirs (partially) about parenting
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1-5 van 15 worden getoond (volgende | toon alle)
Story about a cute little girl who has a rare neurological disorder that renders her almost completely non-verbal. Story is about her father's struggle to find her diagnosis and then his even greater struggle to help her communicate. It hammers home the point that you really need to be your own advocate and that trusting authority - doctors, teachers, social workers, etc. really isn't always the best option. Also highlights the good nature of people in regards to how many readers of his blog donated money on more than one occasion to help out with Schuyler's medical bills and her assisted communication devices. Library book not purchase unless you read his blog and have an interest already. ( )
  hmonkeyreads | Jan 25, 2024 |


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. ( )
  Tosta | Jul 5, 2021 |
This book wasn't what I expecting at all, it surprised me more than anything. It leads you from the birth of Schuyler up to the age of 7. And what we get is the uphill battle that this family has faced in getting an 'actual diagnosis' of Bilateral Perisylvian Polimicrogyria to then fighting for her to have a way to communicate. I'm shocked that this proved to be so difficult and they had to be persistent in order to get the aids that Schuyler needed.
I enjoyed learning about Schuyler's perseverance and happy way that she seems to view the world. And its lovely that at the end of the book, we find that she is doing okay, well good actually. She appears to have a fighting, feisty personality which I loved. Her parents are still a little bit in the world of the unknown but they will try their hardest - even moving, to make sure that her needs are met. ( )
  Nataliec7 | Jul 29, 2017 |
"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.
  POAC-Autism-Services | Jan 2, 2016 |
���ve been reading Rob since I think Robservations, 1997 I think. Certainly for some time before he married Julie. It was interesting to see a story I had followed in real time, superficially, retold in book form: tighter and deeper and more focused of course, with Rob���s smart-assery showing through, more than enough to keep the voice honest and not to the point of distraction.

His and Julie���s love for Schuyler shines strong, as does her own tenacity and vibrancy. I do have a lot of hope for her future, and I can���t imagine anyone finishing the book without sharing that hope.
  ljhliesl | May 21, 2013 |
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The first time we met Schuyler’s monster, it lay waiting to pounce, not from behind a rock or from the mouth of a cave, but peeking out from between the lab coats of two nervous and sad-faced doctors.
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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 couldn't 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 child's disability, Schuyler's Monster is a tale of a little girl who silently teaches a man filled with self-doubt how to be the father she needs.

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