Schuyler's Monster is written by Robert Rummel-Hudson, a man who's blog (www.schuylersmonsterblog.com). I have been following it for about 8 (wow, that shocked me) years. Both the blog, and the book, are centered around the author's journey with his daughter.
This book is Robert telling the story of his daughter, and their journey with Bilateral Perisylvian Polymicrogyria, a neurological disorder which leaves her among other things, unable to speak. it chronicles journey to diagnosis, and learning to deal with various difficulties with peer judgement, schools, and school systems. It also talks about the impact that technology has had for Schuyler, and how she is gaining more independence as technology improves.
When I started nursing school, I wanted to work in the NICU. I looked up a bunch of blogs written by parents of children who had been, or were currently in, the NICU. This lead me into the world of childhood disability. I don't specifically remember how or when I came across this blog, but I decided that if I stuck with the blog for this many years, I should invest in the book.
I enjoyed reading the book, mostly because it gave some back story to his blog posts. I found that it was written much like a blog. He mostly speaks in past tense, and in the first person. I found that this made it easy to read. Most of the books I read are fiction, or at least part-fiction. They are written so that the story plays out in front of the reader. The reader is immersed in the story. This book is written as if the writer was sitting there, telling you a story.
I enjoyed reading the book, mostly because it gave some back story to his blog posts. I found that it was written much like a blog. He mostly speaks in past tense, and in the first person. I found that this made it easy to read. Most of the books I read are fiction, or at least part-fiction. They are written so that the story plays out in front of the reader. The reader is immersed in the story. This book is written as if the writer was sitting there, telling you a story.
This book gave me some added understanding toward the journey that a family takes when a member receives a diagnosis which isn't necessarily a death sentence, but will last for their entire life. I would recommend this to anyone. While Schuyler doesn't have Autism, in many ways she appears to from the outside. She has an invisible disability, and through this book, the reader may find that they have just a little more patience and understanding. If nothing else, more patience with the families. I would also suggest following Robert's blog, as it continues the story. Schuyler is now a teenager, and finding different new obsticles, and solutions.
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