Schuyler’s Monster: A Father’s Journey with His Wordless Daughter, by Robert Rummel-Hudson. Due out next week.

Rummel-Hudson’s daughter Schuyler was diagnosed at the age of 18 months with a rare neurological disorder that prevents her from being able to speak unassisted. This book chronicles his efforts to become the father his daughter needs. From the author’s “letter to readers”:

“… I wrote Schuyler’s Monster for the same reason that I have done just about anything of worth over the past seven years. Schuyler deserves a voice. She deserves to be heard, and the story of her fight against her invisible monster is the most inspiring one that I have known. That it has fallen to me to be the one to share it with you is the happiest accident of my life.

“This memoir exists in part so that you can know that such a little girl ever existed. When you read this book, it is my hope that perhaps, against all logic and in defiance of most parents’ secret desire for the “perfect” child, you might just envy my place in her world a little.”

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Road Map to Holland: How I found my way through my son’s first two years with Down syndrome, by Jennifer Graf Groneberg. Due out in April. A nuanced and beautifully written account of one mother’s journey of discovery. From the book jacket:

“… a story of the love between a mother and her son — the child she didn’t know she wanted, the child she always needed.”

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From Carina Chocano in the Los Angeles Times, a review of the documentary ‘Billy the Kid’. The film follows a 15-year-old who is diagnosed with Asperger’s syndrome.

[Jennifer Venditti's] first film is a movie about adolescence unlike any other; an intimate portrait of a singular personality in the making and a stark look at our culture of suspicion and conformity.

… Aside from an impatient outburst or two, it’s hard to tell whether his behavior is really aberrant or, as his mother Penny keeps reassuring him, just part of growing up. If anything, you get the sense that most of the timid, cliché-dependent adults around him are hellbent on pathologizing anything out of the ordinary, “the ordinary” having been seriously circumscribed by pop psychology and mass media.

Watching the movie, you get the feeling that, 20 years ago, Billy would have been regarded as an average, run-of-the-mill nerd — gauche, gawky, smart, harmless. These days, however, he’s eyed with suspicion by teachers and administrators, who treat him with kid gloves and alert his mother when Billy checks out books about serial killers from the library.

Earlier reviews here.

This entry was posted on Friday, February 8th, 2008 at 9:59 am and is filed under Asperger's, Down syndrome, books, brain damage, documentary, movies. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.  Email This Post