- Hardcover: 288 pages
- Publisher: St. Martin's Press; First Edition edition (Feb. 19 2008)
- Language: English
- ISBN-10: 0312372426
- ISBN-13: 978-0312372422
- Product Dimensions: 15.6 x 2.9 x 20.6 cm
- Shipping Weight: 386 g
- Average Customer Review: 3 customer reviews
- Amazon Bestsellers Rank: #1,175,739 in Books (See Top 100 in Books)
Schuyler's Monster: A Father's Journey with His Wordless Daughter Hardcover – Feb 19 2008
|New from||Used from|
Audio Download, Unabridged
No Kindle device required. Download one of the Free Kindle apps to start reading Kindle books on your smartphone, tablet, and computer.
To get the free app, enter your mobile phone number.
From Publishers Weekly
The monster in this heartfelt memoir is polymicrogyria, an extremely rare brain malformation that, in the case of Rummel-Hudson's daughter Schuyler, has completely impaired her ability to speak. During her first three years, as her parents seek to find out what hidden monster is causing her wordlessness, they endure two years of questions and tests and at least one unsatisfactory diagnosis. But while Rummel-Hudson initially rages at God for giving Schuyler a life that would never ever be what we'd imagined it to be, his depiction of her next four years becomes a study not only in Schuyler's vivacious and resilient personality, but also in the redeeming power of understanding and a stupid blind father's love. As he describes how Schuyler eagerly takes to various forms of communication, such as basic sign language and an alternative and augmentative communication device that provides whole words she can type to express her thoughts, Rummel-Hudson effectively and compassionately shows how the gentle strangeness about her, like a visitor from some realm where no one spoke but everyone laughed, leads him to understand that she was the one teaching me how to make my way in this new world. (Feb.)
Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.
“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
Top customer reviews
There was a problem filtering reviews right now. Please try again later.
"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
Most helpful customer reviews on Amazon.com
When Robert and Julie found out they were pregnant, Robert kept the sex of the baby secret from Julie. Ever since they had a waitress named Schuyler, they wanted to name their baby Schuyler if it was a girl. They were excited to meet their new baby and begin a new life. Just a few weeks before the baby was due, Julie and Robert had a beautiful girl.
Their life was hectic in Detroit. A friend from Robert’s personal blog suggested they moved to New Haven, Connecticut. Robert worked days and Julie worked nights so they could support Schuyler on their own. Dr. Simon, Schuler’s new pediatrician, was concerned with her delayed speech and language abilities at eighteen months old. Hearing testing showed no hear loss but she would only use vowels “ooo” and “ahhh.” She was referred to the Yale Child Study Center but wouldn’t be able to get in for another year or longer.
Until then, Schuyler was referred for Birth to Three services, with physical therapy (PT), occupational therapy (OT), and speech-language pathology services (SLP) services. As parents, they were having mixed feelings about the services because the treatments weren’t effective for her. She became bored with using the Picture Exchange Communication System (PECS). PECS is a communication strategy by using pictures to ask for desired items, answering questions, and commenting. Schuyler was also only using some American Sign Language (ASL). In the summer, she was evaluated by Southern Connecticut State University, which only reconfirmed that she had speech difficulties, which was no help at all. Schuyler was very weary of the evaluations. Before starting Kindergarten, she was evaluated for public school intervention because she would no longer qualify for Birth to Three Services. In December, they were finally about to get into the Yale Child Study Center and were there for evaluations four times throughout the month.
Julie and Robert had a difficult time dealing with the pressure of helping their daughter. They were feeling discouraged when they didn’t have any answers to help Schuyler. This lead to affairs. After realizing their daughter needed them the most, they rekindled their love and knew they needed each other.
One day, Robert and Schuyler were having fun playing in the grocery store when a lady made a rude comment to him about controlling his daughter. Robert felt he was failing as a father. After doing some research, Robert found Dr. Williams Dobyns, who was studying CBPS and sent him an email looking for guidance. He invited the family to join him at the University of Chicago Genetic Clinic for an evaluation. Robert wrote about the doctor of genetics who might have the answers to their questions about Schuyler in his blog. Without asking, he received enough money from his friends to pay for their trip. The meeting with Dr. Dobyns gave them the honest answers they needed to hear. Schuyler may never talk, seizures may begin, and she may never live independently.
Schuyler was given a device, Hip Talk, to help communicate. The Hip Talk is a portable communication device worn around the hip with six different buttons for easier communication. Margaret, the technology advisor for the special needs program, believed Schuyler couldn’t handle the more complex, advanced models of the devices. Robert and Julie thought otherwise and reached out to companies like DynaVox and Prentke-Romich for themselves. They found a few devices that might help Schuyler. After fighting the school district to help pay for a more high-tech device, they came up with the Prentke-Romich Vantage device.
At the Plano Independent School District, there was an actual Assistive Technology Team that supports the use of speech devices in schools. When meeting with the team, they discussed enrolling Schuyler into the classroom with others who use devices like hers. This was a perfect opportunity for them to learn. The move to Plano was much needed for Schuyler’s growth with others.
The first half of the book was difficult to read because most of the information given was the author’s life prior to becoming a father. The chapter of infidelity was heartbreaking. I found it hard to continue to read after such a horrible chapter of two parents who had affairs when their daughter needed them the most. As we learn more about Schuyler, her parents become hard-working, devoted parents who support her and would give her anything.
Those who work with children and families in the special education setting (special education teachers, speech-language pathologist, occupational therapist, physical therapist, psychologists, etc.) would benefit reading from Schuyler’s Monster. The book expresses a parent’s perceptive of learning to cope with a diagnosis. Helping their daughter to grow has been heart-breaking, but also full of beauty of joy and excitement. I believe anyone would find this book to be motivating. Some people don’t understand that children with disabilities cannot always control their involuntary actions. Everyone needs to understand these “out of control” actions happen for a reason.
Schuyler’s Monster: A Father’s Journey with His Wordless Daughter
Author: Robert Rummel-Hudson
Publisher: St. Martin’s Press
Publication Date: February 19th, 2008
Price: $7.99 on Kindle
ISBN: 13: 978-0-312-37242-2
This might be the first book I have read that has left me feeling hopeless and depressed multiple times throughout the reading. However, it has shown me how truly caring and generous even strangers can be, which was very heartwarming. This book is an autobiography written by a father of a young girl who has congenital bilateral perisylvian polymicrogyria, which affects her ability to speak as well as having low muscle tone. The author, Robert Rummel-Hudson, attended college at the University of Texas at Arlington and studied English and music. He has been writing since 1995. Robert became fairly popular online when he began blogging about Schuyler’s journey. The book of course is written from Robert’s point of view, and it is very effective for this story. He has a special connection with Schuyler and could more appropriately put into words the devastation, anger, depression, among other emotions that him and his wife went through in the process of finding a voice for their daughter.
A large portion of the book is about the evaluation process of trying to identify why Schuyler can’t speak. She was taken in for a routine check-up at 18 months old when the doctor asked if she had spoken any words yet. The answer was no, and then the assessments began. Robert’s family traveled from city to city seeing different doctors and having Schuyler evaluated on multiple tests. Not only did they travel to multiple cities for the different evaluations, they also moved several times due to stress and wanting a new beginning. Unfortunately, no one could give Robert and Julie (Schuyler’s mom) an answer for what was wrong until finally an MRI was performed. Results concluded that Schuyler had a brain malformation known as congenital bilateral perisylvian syndrome.
The good news is that the condition won’t get any worse. The bad news is that it won’t get any better either.
Schuyler was five years old when professionals finally began having her try out AAC devices. I couldn’t believe it took professionals this long to try an AAC device with her. She caught on very quickly with the low-tech device and was ready for a high-tech device with more opportunities. The school kept rejecting the parents’ request for the higher end device, but they didn’t give up. They raised money and got the device for Schuyler. Although this device changed her world and gave her a voice, she still faced difficulties. During summer school, one of the teachers muted her AAC device, which really upset Schuyler. “Well, Mrs. Barber says that the box is a distraction in her class and so we leave it in the Life Skills room. She says that the box distracts the other kids and they all want to come look at it and watch Schuyler use it. Also, she says it’s too loud”
(p. 235-236). That was the explanation from one of the teachers, which is sad. The whole reason Schuyler was in summer school was to use her device and become more comfortable with it. The school’s speech-language pathologist is the one who came up with the idea to leave Schuyler’s device in a different classroom, which baffles me considering she should be the main one encouraging Schuyler to communicate instead of taking that opportunity away from her.
Another time, Schuyler was playing at the play area in the mall when she got into an altercation with a young girl. The young girl was bossing the other children around, calling them names, and making them move from where they were playing. Schuyler wasn’t fazed which upset the girl and lead to the fight. Right after Schuyler punched her back, the girl exclaimed “You can’t talk!” she screamed in Schuyler’s face, bending down slightly. “You’re a crazy retard! You’re stupid!”
(p. 262). I felt so awful for Schuyler. She didn’t have a way to use her words to defend herself in that moment so she let out a loud howl.
After years of searching for the right city, Robert and his family settled with Plano, Texas. They found a great school that has an AAC team and even a course specifically for AAC users. The school was perfect for Schuyler. She made many friends and no longer felt like an outsider.
The concepts and language used in this book are very clear and understandable. The author explains what AAC is and does a great job explaining how the devices Schuyler used looked like. He explained the issues with getting the school to pay for a high tech device too. The main concept that confused me was Schuyler’s diagnosis of congenital bilateral perisylvian syndrome. I had never heard of this before, but I knew congenital means at birth and bilateral means on both sides. I wasn’t for sure about the perisylvian part, but I was pretty sure that area has to do with speech. The author explained that this syndrome includes “partial paralysis of facial muscles, resulting in speech difficulties and excessive drooling; in some cases it can lead to feeding problems for a baby. It lives in a deeply grooved area on either side of the brain called the sylvian fissure and impairs both the speech areas and those controlling fine motor skills” (p. 123).
A really neat factor about this book is the realness of it. The author not only talks about issues regarding Schuyler and her inability to speak, but he also talks about his personal life. He talks about the rough relationship he has with Julie’s parents, his depression, and even an affair he had. His wife also had an affair during the time when they were still trying to find a diagnosis for Schuyler. It must have taken a lot of courage to talk about these issues in a book that your family will most likely read.
Overall, I did enjoy this book. I was worried for awhile that the book might not have a happy ending considering they didn’t get Schuyler an AAC device nearly until the end of the book. I thought it was incredible how touched people were by Schuyler’s story and donated money to help get her a device. I also really enjoyed the author’s writing style. I thought he was funny and good at keeping me engaged. I even learned about a syndrome I had never heard about before. I’m curious as to how Schuyler is doing now and if she has had any health issues.