Mar 30 2009
Book Review - “Schuyler’s Monster: A Father’s Journey With His Wordless Daughter” by Robert Rummel-Hudson
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I first heard about Schuyler’s Monster: A Father’s Journey With His Wordless Daughter by Robert Rummel-Hudson from a patron who was returning the book. He said that his wife read it, and thought it was excellent. Intrigued, I checked it out and brought it home, only to promptly forget about it.
It sat on my shelf for a while, until a couple of days ago, when I finally decided that I needed to either read it or return it. I figured I’d give it the first chapter to prove its worth, or it was going back to the return bin.
Well, I read it and fell in love with it.
Schuyler (pronounced “Sky-ler”) is a beautiful little girl (yes, that is her on the front cover of the book) who was born with an extremely rare disease that robs her of the ability to speak coherently. It also causes her to have only partial small muscle control, which means that it’s difficult for her to use sign language. She does it, but it’s hard and some of the more difficult signs are out of her reach. And in the other cases of people afflicted with this disease, there is usually mental retardation, although they aren’t positive that’s something Schuyler has been afflicted with.
But up until Schuyler’s 18-month birthday, nobody realized anything was wrong with her. She was a smiley, happy baby who won the hearts of everyone around her; she was able to walk and eat like other babies, and she did make noises. During a routine check-up with the doctor, however, the doctor started to probe deeper and they started to realize that not all was right in the land of Oz. It took several years and many, many tests to finally receive a correct diagnosis.
The eventual result of the testing and diagnosis was that they realized that Schuyler was never going to be able to speak like “a normal person.” Up to that point, they had been hoping that with enough therapy and work, Schuyler would eventually be able to speak clearly. So they started looking at options that would provide Schuyler a way to communicate with the rest of the world.
Like I said before, sign language is something she can do, but not well, so they went after a high-tech option that if Schuyler would have been born 20 years earlier, never would have been available to her. It was an “alternative augmentative communication device” or an AAC device.
An AAC in its most basic form allows the person to push buttons and then the device says the sentence outloud. The picture I have posted is of the latest and most high tech version yet, the Vantage Lite, but at $7,295 it isn’t cheap. The funding would normally come from a school district, but the majority of Schuyler’s Monster is spent chronicling their fight to get an AAC for Schuyler, and to get the teacher support needed for this type of device to work.
So that’s the story in a nutshell. Although it’s a sad story, on the surface there isn’t much there to grab you and hold your attention. But it’s the writing that really does it for me. Rummel is a blogger (check out Schuyler’s Monster blog) and in fact this book grew out of that blog, not the other way around. His writing style causes this to be one of the most enjoyable books I’ve read this year. I cried, I laughed, and everything in between.
I cannot tell you how thoroughly I enjoyed Schuyler’s Monster. It is rare to find an author who is willing to be so open about his life and his feelings. Life wasn’t hunky-dory. The family went through a lot, and they almost didn’t make it. I appreciated Rummel being willing to tell it exactly how it was, and to tell it so well, I cared about them through out it all.
For a darling video of Schuyler using her very first AAC (or “box of words” as Rummel calls it) check out the following. Keep in mind, she’s 5 years old in this video.
I give Schuyler’s Monster 4.5 out of 5 stars. Good luck, Schuyler - I know you’re going places, girl.
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