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SCHUYLER'S MONSTER [h/b]
 
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SCHUYLER'S MONSTER [h/b] (Hardcover)

by Robert Rummel-Hudson (Author)
5.0 out of 5 stars See all reviews (1 customer review)
RRP: £16.99
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Product details

  • Hardcover: 288 pages
  • Publisher: St Martins Press (30 May 2008)
  • Language English
  • ISBN-10: 0312372426
  • ISBN-13: 978-0312372422
  • Product Dimensions: 21.3 x 14.7 x 3 cm
  • Average Customer Review: 5.0 out of 5 stars See all reviews (1 customer review)
  • Amazon.co.uk Sales Rank: 465,204 in Books (See Bestsellers in Books)

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Product Description

Review
Advance praise for Schuyler's Monster:
"A gripping explication, shot through with equal parts horror and hope, of how parenthood can turn ordinary people into passionate advocates." -Neal Pollack, author of "Alternadad
""Robert Rummel-Hudson is brave enough to reveal the damage the discovery of his child's condition did to his marriage and to his own sense of self. He manages to repair some of the damage through close involvement with Schuyler and vigorous campaigning on her behalf. His memoir is honest, often painful and deeply personal." -Charlotte Moore, author of "George & Sam
""The book is engaging and honest--I'm sure it will help many parents who are struggling to find the most loving way to help their children who have 'issues.'" -Dana Buchman, designer, author of "A Special Education"

Synopsis
Presents a father's memoir of life with a young daughter afflicted with polymicrogyria, a rare brain disorder, offering a poignant, candid, and often whimsical account of one child's determination, tenacity, fearlessness, and joy in the face of disability.

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1 of 5 people found the following review helpful:
5.0 out of 5 stars Within You, Without You, 24 April 2008
By BeatleBangs1964 (United States) - See all my reviews
(TOP 500 REVIEWER)   
"We were talking, about all the space between us." -- George Harrison, 1967

"The shortest distance between two or more minds is that of one's real voice." -- BeatleBangs1964

Robert Rummel-Hudson chronicles his life alongside that of his daughter, Schuyler. Schuyler, who was born on December 21, 1999 was the high note to a new and happier point in Rummel-Hudson's life. At that time, Rummel-Hudson had recently remarried after a marriage he described as being devoid of passion to a "perfectly nice" woman who was not his soulmate. From all outward appearances, his marriage to Julie appeared to be on rock solid footing.

Readers learn a lot about Rummel-Hudson. One of 3 siblings, he unflinchingly describes his mercurial relationships with his siblings and their late father. He takes a forgiving tone when he said that his immediate family "used the tools" they had at the time, but the end results were the fault of no one. I like that.

Rummel-Hudson, unlike Julie wanted to know his baby's gender. While Julie was convinced they'd have a son whom she'd name Jasper, Rummel-Hudson never divulged that he had the medical staff tell him Schuyler's gender from the sonogram. As a concession to Julie, Rummel-Hudson buys a large toy bear whom they call Jasper in anticipation of their first child.

The name Schuyler was chosen for a daughter as a nod to her Dutch heritage. As she grew into her first year and not into speech, her name became even more meaningful. She was the unexpected trip to Holland when the travelers were planning to go to Italy. She was the unexpected source of treasures when another type of treasures were expected.

I thought it was so adorable that Schuyler had an aversion for stuffed toys during her infancy. She had an adverse reaction to Jasper the Bear and refused to have anything to do with it. I also thought it was quite adorable when Schulyer "coldly" tossed a doll back into a Christmas gift box her first Christmas. In time, she appeases her father by playing with Jasper. Even then, she carries the toy in an inverted position, never seemingly sure quite how he wants her to play with it. Since she didn't like stuffed toys, it would have been a better idea not to get them for her and to put the ones she had away instead of leaving a few out. I didn't like the way the stuffed toys were seemingly pushed on her. She was very adamant in how she felt.

Schuyler's absense of speech and speech development became alarming over the course of her first year. Tests failed to yield any diagnosis or treatment plan that seemed viable. By 2003, Schuyler got to do some traveling - a move from her native Michigan to New Haven Connecticut and a later move to central Texas. It was in 2003 that Schuyler was diagnosed with the congenital condition of polymicrogyria, which Rummel-Hudson calls her "monster." A monster is a fear of the unknown; often, an amorphous or grotesquely shaped oddity that inspires fear. The "monster" in this case was a rare condition that robbed Schuyler of her ability to speak.

One cannot help but feel cheered by Rummel-Hudson's love for and final acceptance of his child. Julie mourns Schuyler not having siblings as she fears any subsequent child will have polymicrogyria. In addition to the delayed speech, Schuyler shows some developmental lags as well. She was nearly 5 before she mastered toileting and other self-care skills.

Schuyler appears to accept herself as she is and her peers in the various schools she attended appear to enjoy her as well. One setback Schuyler encountered was when her speech teacher refused to learn sign language so that Schuyler would have this method of communication. Another setback Schuyler encountered was when her school refused to buy a device called the "Big Box of Words." The device involved typing on its screen, which then activated the "voice" that the words trigger. Rummel-Hudson's faithful network of bloggers on his website band together and raise money for the Big Box.

Schuyler and family find their niche in Plano, Texas which is in the Dallas area. Schuyler is described as thriving in the Plano school district and even has fun with her Big Box. Schuyler's humor develops as she jokes and plays with expressions and things she found funny. She fills the metaphysical space between herself and others with her newfound voice! She liked making monster noises with it and even unleashed anger at another child who mocked her on a playground. At last, Schuyler found her own voice!

Having one's own voice is a large part of one's identity. Being able to communicate by whatever means necessary one's true thoughts and feelings and reactions instead of merely echoing the party sentiment is very empowering. It also engenders respect and helps one to forge their own identity.

"Within You, Without You," a 1967 masterpiece by George Harrison is the soundtrack that underscores this book. Schuyler's story is about acceptance and paternal love. "When you've seen beyond yourself, then you may find that peace of mind is waiting there. " -- George Harrison, 1967
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