I've always been interested in memoirs of the disability experience. From the time I was small, I have always felt a connection to the people who tell these stories. I know they get it. I'm more drawn to autobiographies of people living with a disabilities for obvious reasons. My next book broke that trend in a big way.
Schuyler's Monster:A Father's Journey with His Wordless Daughter is as the title implies,is written from a father's point of view. When his daughter Schuyler is born, he has no idea that her monster already lurks in her brain. When she is diagnosed with a brain condition at around two years old, he feels extreme guilt for not knowing that anything was wrong. The disorder, polymicrogyria effects Schuyler's oral speech most profoundly. She has very little intelligible speech. When she is small, she uses some Signed Exact English,but because of some significant fine motor delays signing wasn't going to be a good long term communication tool. Always resourceful, her parents strike out to find her a voice. When she's about five, they discover Augmentative Alternate Communication (AAC) technology. The book tells the story of her parent's fight with several uncooperative schools to get Schuyler the device that she needs to be able to reach her full potential It is by turns funny, sarcastic and heartbreaking. This father reminds me so much of my own. I even told my Dad about the book when I was finished.
Hooray for hard-working tenacious parents!
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