“Ghost Boy”

One of the best books I have read in a while is “Ghost Boy“, an autobiography by Martin Pistorius. At age 12, he became sick with an illness the doctors were unable to diagnose, which resulted in severe muscle weaknesses and lack of speech. He was unable to use his body to show his family and caregivers that he was mentally aware, so his physical needs were attended to, while his unstimulated mind retreated into imagination. His use of language is beautiful, but also rightfully disturbing, as he describes the abuses he suffered at the hands of certain “care”-givers. Eventually, one caregiver realised that he was understanding and responding to her, and spoke to his parents about having him assessed for AAC (Augmentative and Alternative Communication). He described the joy of communication, then discovered some of its limitations- and ultimately its power to help facilitate his dreams. As we are starting down the road of AAC ourselves, I found his comments and experiences to be insightful.

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