By Robert Rummel-Hudson; 273 pages. Subtitle: A Father's Journey With His Wordless Daughter
Little Schuyler may be wordless, but that should never be confused with an inability to communicate. Just by the evidence of the delightful picture on the cover, this girl's spirit speaks pretty loudly, and whether she's laughing at her dad or growling at a playground bully, she makes herself heard. Her parents' effort to get the right diagnosis and the right communication technology form the basis of this sometimes moving, sometimes snarky memoir.
- The text is enjoyable and fast-moving
- The author's unwavering love for his daughter, and respect for who she is, runs throughout
- Depicts the stages many parents go through after a devastating diagnosis
- Gives an inspiring account of how Web friends rally around each other
- Though there may be more challenges ahead, this part of the story has a happy ending
- Author takes a dire view of other disabilities that may make some readers bristle
- Similarly, some readers may be offended by his references to Schuyler as "broken"
- Reading of these parents finding the perfect special-ed situation may make yours look worse
- Part 1: A Monster Hiding
Chapter 1: Kalamazoo
Chapter 2: When I Grow Up - Chapter 3: A Joyful Kind of Chaos
Chapter 4: Disquiet
Chapter 5: The Saddest Place in the World - Chapter 6: The Holland Thing
Chapter 7: "Nothing Makes Us So Lonely as Our Secrets" - Chapter 8: The Answer That Was False, and the Answer That Was True
- Part Two: A Monster Revealed
Chapter 9: Monster
Chapter 10: Hard Times Give Me Your Open Arms - Chapter 11: Schuylerese for Beginners
Chapter 12: To the Mountaintop - Chapter 13: Bug Fairy
Chapter 14: Note to Schuyler, Christmas 2004 - Chapter 15: Fighting Monsters With Rubber Swords
Chapter 16: The Island - Part Three: A Monster Challenged
Chapter 17: Vox
Chapter 18: The Village
Chapter 19: A Big Box of Words - Chapter 20: Speechless
Chapter 21: Box Class
Chapter 22: Howl
This memoir, full of fear and rage and disappointment and acceptance and advocacy and ferocious love, offers plenty of touchstones for parents who have dealt with diagnoses that are infuriatingly wrong or frighteningly right; know-it-all, know-nothing school personnel; and the feeling that if you don't do anything, or do the wrong thing, you will be dooming your child.
In Schuyler's case, the scary diagnosis -- her monster, as it's called -- is bilateral perisylvian polymicrogyria, a rare brain malformation that leaves her unable to speak. The way her parents ultimately make an end-run around an uncooperative school system to get the right communication device, and then find another district that is like a special-ed wish fulfillment fantasy, will have you cheering. (Also, if you're like me, a scene in which Schuyler's dad tells off a nasty old lady in a supermarket the way you've always wanted to).
But maybe the most gratifying thing about Schuyler's Monster is its demonstration of how the Internet has transformed the experience of being the parent of a child with special needs. Moms and dads faced with daunting diagnoses can hop on the Web and look up information, often becoming more expert on their child's disabiities than the people who treat or teach their kids.
If they find a specialist who might have an answer, they can shoot that individual an e-mail directly and confer spontaneously. They can research technological solutions, and contact equipment providers.
They can write about their experiences in blogs that build communities of caring strangers. And in one particularly remarkable incident from the book, they can seek more than just moral support from that farflung village, and find funding for solutions that schools have turned down.
That's all kinds of heartwarming right there.
