What do you think?
Rate this book
Schuyler's Monster: A Father's Journey with His Wordless Daughter
Schuyler’s Monster is an honest, funny, and heart-wrenching story of a family, and particularly a little girl, who won't give up when faced with a monster that steals her voice but can’t crush her spirit.
When Schuyler was 18 months old, a question about her lack of speech by her pediatrician set in motion a journey that continues today. When she was diagnosed with Bilateral perisylvian polymicrogyria (an extremely rare neurological disorder caused by a malformation of the brain), her parents were given a name for the monster that had been stalking them from doctor visit to doctor visit and throughout the search for the correct answer to Schuyler's mystery. Once they knew why she couldn’t speak, they needed to determine how to help her learn. They didn’t know that Schuyler was going to teach them a thing or two about fearlessness, tenacity, and joy.
Schuyler’s Monster is more than the memoir of a parent dealing with a child’s disability. It is the story of the relationship between a unique and ethereal little girl floating through the world without words, and her earthbound father who struggles with whether or not he is the right dad for the job. It is the story of a family seeking answers to a child’s dilemma, but it is also a chronicle of their unique relationships, formed without traditional language against the expectations of a doubting world. It is a story that has equal measure of laughter and tears. Ultimately, it is the tale of a little girl who silently teaches a man filled with self-doubt how to be the father she needs. Schuyler can now communicate through assistive technology, and continues to be the source of her father's inspiration, literary and otherwise.
When Schuyler was 18 months old, a question about her lack of speech by her pediatrician set in motion a journey that continues today. When she was diagnosed with Bilateral perisylvian polymicrogyria (an extremely rare neurological disorder caused by a malformation of the brain), her parents were given a name for the monster that had been stalking them from doctor visit to doctor visit and throughout the search for the correct answer to Schuyler's mystery. Once they knew why she couldn’t speak, they needed to determine how to help her learn. They didn’t know that Schuyler was going to teach them a thing or two about fearlessness, tenacity, and joy.
Schuyler’s Monster is more than the memoir of a parent dealing with a child’s disability. It is the story of the relationship between a unique and ethereal little girl floating through the world without words, and her earthbound father who struggles with whether or not he is the right dad for the job. It is the story of a family seeking answers to a child’s dilemma, but it is also a chronicle of their unique relationships, formed without traditional language against the expectations of a doubting world. It is a story that has equal measure of laughter and tears. Ultimately, it is the tale of a little girl who silently teaches a man filled with self-doubt how to be the father she needs. Schuyler can now communicate through assistive technology, and continues to be the source of her father's inspiration, literary and otherwise.
288 pages, Hardcover
First published February 19, 2008
38 people are currently reading
1729 people want to read
About the author
Robert Rummel-Hudson
2 books43 followersRobert Rummel-Hudson is the author of Schuyler's Monster, published by St. Martin's Press in February 2008. He and his family currently live in Plano, Texas.
His work has been featured in Good Housekeeping (February 2008) and Wondertime (March 2008). His book was reviewed in People, receiving 3.5 out of 4 stars.
More of Robert’s observations can be found on his blog, Fighting Monsters with Rubber Swords.
His work has been featured in Good Housekeeping (February 2008) and Wondertime (March 2008). His book was reviewed in People, receiving 3.5 out of 4 stars.
More of Robert’s observations can be found on his blog, Fighting Monsters with Rubber Swords.
Ratings & Reviews
Friends & Following
Create a free account to discover what your friends think of this book!
Community Reviews
Displaying 1 - 30 of 204 reviews
February 19, 2008
Everyone must read this book. Not just because it's about my daughter and husband, but it's an excellent read. Robert is a fantastic writer. His writing is warm and inviting and makes you feel like you are talking to him face to face. Enjoy!
June 13, 2009
I am on page 221 of 273. you might like (or hate) this book if you are a speech pathologist..................which you likely are not, but you might like it anyways. it's about a families quest to find out why their daughter doesn't speak and then about the uphill struggle with the school district to get her an appropriate augmenative/ alternative communication device. it gives a really good look at the perspective of a parent of a child with a disability. It makes me wonder how certain people in the world can be so ignorant and nasty to people who are different from them. I mean, truly, aren't we all different in some way? just sayin. This book encouraged me to be a better speech pathologist and not one who just has good intentions.
March 29, 2008
I've resisted buying this book until now because I've followed the author's blog for nearly 10 years. But I didn't resist because I knew the story. Instead, I was afraid in the editing, the author's voice would be lost. It wasn't. Rob is there with his quirky, twisted mind still intact, and so is his deep love for his daughter. Excellent book. Well written and a good read.
April 14, 2018
I believe that Robert did a wonderful job of drawing the reader in with his humor and down to earth take on life. He enabled the reader to feel his pain and understand the struggle of having a nonverbal child, but without making it a gloomy read. It is certainly pessimistic, but in a funny, sarcastic way that allows the reader to see occasionally see glimpses the love, hope, and struggle in Robert’s mind. Additionally, he is a wonderful writer and has crammed the book full of wonderful quotes about life and love and Schuyler. I did not personally find anything to dislike about the book, but I could understand others claiming that his writing tends to be a little crude and heavy-handed. He is not someone to speak euphemistically or cater to anyone’s sensitivities which I could see being a problem if you have any such sensitivities. This book would be good for other parents with children who have special needs because Robert is clearly not a perfect individual and his story is one of a flawed parent struggling to come to terms with his child’s disability and be the best father he could be. It could be very encouraging to other parents who feel frustrated, cheated, and helpless because he does not sugar coat any part of his journey or make himself out to be any more than the flawed, struggling, learning individual that he is.
January 21, 2010
I was surprised by a few things in things in this book; first that the author didn't commemorate his daughters first words, and second that an agnostic could find belief in God if only to lay blame.
In a book with the purpose of documenting the author's daughters wordless journey through life, one would expect a thorough documentation of his daughters first words. I was disappointed that he could remember in great detail other experiences but glosses over Schuyler's first words by lumping a few of them together and discrediting them because they are only discernable to the parents. Isn't that how all of our children's first words come out?
I have a difficult time with those who can only accept a Higher Power when they want someone to take blame for the trials of life. If you can have enough faith to beleive God would punish you why can't you find faith to beleive that He loves you?
The author's family has obviously been through some difficult things but what a triumph to see that in many ways the monster has been overcome!
In a book with the purpose of documenting the author's daughters wordless journey through life, one would expect a thorough documentation of his daughters first words. I was disappointed that he could remember in great detail other experiences but glosses over Schuyler's first words by lumping a few of them together and discrediting them because they are only discernable to the parents. Isn't that how all of our children's first words come out?
I have a difficult time with those who can only accept a Higher Power when they want someone to take blame for the trials of life. If you can have enough faith to beleive God would punish you why can't you find faith to beleive that He loves you?
The author's family has obviously been through some difficult things but what a triumph to see that in many ways the monster has been overcome!
April 23, 2024
Kind of hate how often he refers to his kid as “broken” or her disability as a “monster”….. I understand trying to normalize the intense emotions parents go through during these journeys and how this completely turned their life upside down but it’s a little much. I hated reading about the affair and I do not think that really needed to be published (imagine reading a book your parents wrote about how your disability made their life so bad that they cheated on each other and blamed you for it but also stayed together because of you?). Took WAY TOO LONG!!!!! for this kid to get a device or even learn sign. IK this was like 2004 and things are obviously very very different now, but lord almighty the wait was agonizing. Not the fault of the parents but I couldn’t believe the professionals weren’t pushing sign. The school district limiting the devices they would fund made me sooooo angry and sad. Don’t wait for a miracle and TEACH KIDS COMMUNICATION THEY CAN ACCESS!!!! idk. hope they’re doing well.
February 28, 2011
Parent memoirs about kids with problems come out pretty regularly every year, and I've read a bunch of them. Some present a detailed picture of a hellish life in which hope never rears its head. Some tell the story of a cure (unconventional, of course--just about any time a developmentally disabled kid makes real progress it's the result of trying something unusual) and thereby incite a stampede of families seeking to emulate what was done (alas, without comparable success). Some take the attitude that the beloved child in question is fine just as-is and that it's the rest of the world that's screwed up for failing to understand that. Quite often, the youngster in question truly is only minimally affected, in comparison with large numbers of profoundly disabled kids I've seen. As the parent of a disabled young man now nearing his 26th birthday, I find all the foregoing approaches disappointing, which is why I set out to write one of my own.
In Schuyler's Monster, the author takes pains to present his family first and foremost as regular people. That's a point my son's mother always sought to make: She didn't want people to see us as part of some miserable subculture. We were no different from any other parents who want the best for their kids. The special clinics and schools we were steered toward looked every bit as alien and unacceptable to us as they would to you. So I like the way the author begins by presenting himself and his wife as a likeable but unremarkable young couple (though he spends more pages doing so than is really necessary).
Based on his blog posts, I knew before starting that his book would not fall into any of the above groupings. It does give early indications of wanting to be in the third, with its playful cover illustration and observations like "She wore her brokenness like a veil of stars" and "When people would look at her with that expression of 'What's her problem?' it made me want to knock them over and scream. 'What's wrong with YOU?'" Being entirely familiar with that impulse, I see the distinction between simple defensiveness--protectively embracing the entire package of beloved child plus disability--as opposed to acknowledging that the two are distinct and being able to hate the latter. I think the book shows Rummel-Hudson's progression in coming to what I think is the only constructive attitude toward the subject.
No one makes that progression easily, and he documents many aspects of it that intersect with my own experience. His overcoming of "that unspoken sense of something akin to superiority we all feel when we watch the unfortunate make their way through the same world in which we live," the scene in which he hurls a soda can at the church, his dismay with teachers who imagine that parents will be pleased with art projects that were obviously done entirely by the teachers, his confrontation with the heartless bitch in the grocery store, his efforts to compose an email to a distant subject matter expert--all these cleansingly honest depictions and more are a frank look into the daily life of unknown numbers of parents.
And there is much more to this experience that I find all too familiar. There's the noting of people who observe your child "like how you might watch a weird bug on your windowsill," and the dread of how the world will treat your child in the future, after the cuteness of childhood is no longer a buffer, and the desire to take your child and just escape to live apart on a remote island. I recognize Rummel-Hudson's musings about a God who (if we limit ourselves to the traditional concept) must be either heartless or impotent. I particularly relate to his description of the absurd system that pits parents, who quite understandably want their kids to have the best opportunity to succeed, against schools with limited budgets and educators with fragile egos. I had numerous interactions with school representatives that were comparable to those depicted here, and it's in that context that Schuyler's Monster approaches the alienation that figures so prominently in my own story.
My family's experience differs from that of Schuyler's family in that the physicians we saw were not as smart or as interested in helping, and had the effect of forcing us to attempt therapies on our own, with help from unconventional providers and volunteers. But most of what Rummel-Hudson says applies to everyone in comparable straits. He's absolutely right when he acknowledges "how pathetic it might look to some, the way we fight for something we may never win. ... I knew I was very likely wrong about what Schuyler was capable of. But the thing is, I might not have been wrong."
Schuyler's Monster is one of the helpful memoirs, one of the universal stories about a particular condition, along with This Lovely Life and Alex: The Life of a Child and probably a few others. It neither gives way to despair, nor pretends to say more than it does, nor yet sacrifices reality in the interests of concocting a heartwarming tale. It does honor Schuyler with an affectionate portrait and thereby emphasizes the vital importance of addressing the situation we have with so very many kids like this more effectively than has been done thus far.
In Schuyler's Monster, the author takes pains to present his family first and foremost as regular people. That's a point my son's mother always sought to make: She didn't want people to see us as part of some miserable subculture. We were no different from any other parents who want the best for their kids. The special clinics and schools we were steered toward looked every bit as alien and unacceptable to us as they would to you. So I like the way the author begins by presenting himself and his wife as a likeable but unremarkable young couple (though he spends more pages doing so than is really necessary).
Based on his blog posts, I knew before starting that his book would not fall into any of the above groupings. It does give early indications of wanting to be in the third, with its playful cover illustration and observations like "She wore her brokenness like a veil of stars" and "When people would look at her with that expression of 'What's her problem?' it made me want to knock them over and scream. 'What's wrong with YOU?'" Being entirely familiar with that impulse, I see the distinction between simple defensiveness--protectively embracing the entire package of beloved child plus disability--as opposed to acknowledging that the two are distinct and being able to hate the latter. I think the book shows Rummel-Hudson's progression in coming to what I think is the only constructive attitude toward the subject.
No one makes that progression easily, and he documents many aspects of it that intersect with my own experience. His overcoming of "that unspoken sense of something akin to superiority we all feel when we watch the unfortunate make their way through the same world in which we live," the scene in which he hurls a soda can at the church, his dismay with teachers who imagine that parents will be pleased with art projects that were obviously done entirely by the teachers, his confrontation with the heartless bitch in the grocery store, his efforts to compose an email to a distant subject matter expert--all these cleansingly honest depictions and more are a frank look into the daily life of unknown numbers of parents.
And there is much more to this experience that I find all too familiar. There's the noting of people who observe your child "like how you might watch a weird bug on your windowsill," and the dread of how the world will treat your child in the future, after the cuteness of childhood is no longer a buffer, and the desire to take your child and just escape to live apart on a remote island. I recognize Rummel-Hudson's musings about a God who (if we limit ourselves to the traditional concept) must be either heartless or impotent. I particularly relate to his description of the absurd system that pits parents, who quite understandably want their kids to have the best opportunity to succeed, against schools with limited budgets and educators with fragile egos. I had numerous interactions with school representatives that were comparable to those depicted here, and it's in that context that Schuyler's Monster approaches the alienation that figures so prominently in my own story.
My family's experience differs from that of Schuyler's family in that the physicians we saw were not as smart or as interested in helping, and had the effect of forcing us to attempt therapies on our own, with help from unconventional providers and volunteers. But most of what Rummel-Hudson says applies to everyone in comparable straits. He's absolutely right when he acknowledges "how pathetic it might look to some, the way we fight for something we may never win. ... I knew I was very likely wrong about what Schuyler was capable of. But the thing is, I might not have been wrong."
Schuyler's Monster is one of the helpful memoirs, one of the universal stories about a particular condition, along with This Lovely Life and Alex: The Life of a Child and probably a few others. It neither gives way to despair, nor pretends to say more than it does, nor yet sacrifices reality in the interests of concocting a heartwarming tale. It does honor Schuyler with an affectionate portrait and thereby emphasizes the vital importance of addressing the situation we have with so very many kids like this more effectively than has been done thus far.
June 4, 2025
I had to read this book for my graduate course (AAC- Alternative Augmentative Communication). Overall, this book was great and gave a first-hand experience of the trials and tribulations faced in a world so focused on verbal speech.
September 13, 2023
4.5*
A powerful read that highlights the importance of parents advocating for their special needs child and unfortunately the inequality between public schools.
A powerful read that highlights the importance of parents advocating for their special needs child and unfortunately the inequality between public schools.
November 28, 2023
was assigned this book for my clinical processes class so I honestly wasn’t expecting much, but man did I love it! the sweetest story of advocacy, fearlessness, and how special communication is.
July 6, 2020
I enjoyed this book. The author’s choice of words to talk about disability I understand but ultimately I think those words and mindset contribute to the challenges he fears most for his daughter.
July 9, 2023
Beautiful and honest story of a man fighting for his daughter's healthcare in a world trying to learn about a rare brain disorder. How these parents fought for not what their daughter "couldn't do" but focused on what she "could do" if given the opportunity.
My heart goes out to your family!!! Keep fighting!!
My heart goes out to your family!!! Keep fighting!!
June 14, 2009
People pick up this book and expect it to be a warm, fluffy memoir about a father's love for his daughter. And it is, don't get me wrong, but it's also a humane look at how people's lives are sometimes turned upside-down by having a "special-needs" child.
I first heard of this book from my mother, who had bought it and read it and continued to follow Rob's blog. I even teased my mother that I think she loved Schuyler more than she loved me and that made her say, "... well, actually, she's kinda like you."
If Schuyler continues with her Converse, funky-socked, dyed-hair self, she is totally going to look similar to me in ten years, so I hope her parents are ready for rainbow hair and bags covered with buttons that read "Being Weird Isn't Enough!" and "Who Says I Want to Fit In?" (Or my recent favorite: "I Dress This Way to Horrify the Tourists!")
This book is an easy read, partly because of Rob's writing style. It's got his signature quips in it, and really does read like he's talking to you in person. For some people, this is off-putting, but it makes the reading experience more real for the rest of us. He says what some of us think but never have the anatomy to say aloud.
I have a lot of favorite parts in this book. Not surprisingly, they are the first moments that I'm sure her parents also treasure: her first time sitting on Santa's lap, the first time she "spoke" her name, the first time she terrorized her teachers. You become so integrated into the story that when Schuyler finally gets that Big Box of Words, you finally hear her speak in a way that made it sound like you were, actually, hearing her. Her character becomes stronger at that instant, and I only realized it when I read the line "She did pretty well, aside from her refusal to stop hitting the 'ice cream' button."
Will Rob write another book about his daughter? (My mom suggested writing a book on her teenage years...) I'd like to see another book in print, but I also really enjoy reading his blog, which is much faster than sitting around and waiting for a book to be edited and printed.
My only complaint is regarding the book cover image. When I saw it, I knew it looked familiar. Indeed, it's quite similar to Lucy Grealy's memoir, "Autobiography of a Face." While this is interesting because Grealy became a writer (and I would not be surprised if Schuyler ends up dabbling in writing or some other form of creative art), it's also tragic because of how Grealy's own story ends. Put simply, while Schuyler is cute as all get-out, the cover image was chosen in bad taste.
I first heard of this book from my mother, who had bought it and read it and continued to follow Rob's blog. I even teased my mother that I think she loved Schuyler more than she loved me and that made her say, "... well, actually, she's kinda like you."
If Schuyler continues with her Converse, funky-socked, dyed-hair self, she is totally going to look similar to me in ten years, so I hope her parents are ready for rainbow hair and bags covered with buttons that read "Being Weird Isn't Enough!" and "Who Says I Want to Fit In?" (Or my recent favorite: "I Dress This Way to Horrify the Tourists!")
This book is an easy read, partly because of Rob's writing style. It's got his signature quips in it, and really does read like he's talking to you in person. For some people, this is off-putting, but it makes the reading experience more real for the rest of us. He says what some of us think but never have the anatomy to say aloud.
I have a lot of favorite parts in this book. Not surprisingly, they are the first moments that I'm sure her parents also treasure: her first time sitting on Santa's lap, the first time she "spoke" her name, the first time she terrorized her teachers. You become so integrated into the story that when Schuyler finally gets that Big Box of Words, you finally hear her speak in a way that made it sound like you were, actually, hearing her. Her character becomes stronger at that instant, and I only realized it when I read the line "She did pretty well, aside from her refusal to stop hitting the 'ice cream' button."
Will Rob write another book about his daughter? (My mom suggested writing a book on her teenage years...) I'd like to see another book in print, but I also really enjoy reading his blog, which is much faster than sitting around and waiting for a book to be edited and printed.
My only complaint is regarding the book cover image. When I saw it, I knew it looked familiar. Indeed, it's quite similar to Lucy Grealy's memoir, "Autobiography of a Face." While this is interesting because Grealy became a writer (and I would not be surprised if Schuyler ends up dabbling in writing or some other form of creative art), it's also tragic because of how Grealy's own story ends. Put simply, while Schuyler is cute as all get-out, the cover image was chosen in bad taste.
July 29, 2014
The first quarter of the book would have been more aptly named "Schuyler's Dad" because it describes in great detail his trombone playing skills and many of the experiences he had prior to becoming a father. That would have been interesting had it had any relevance to the book about his daughter's handicap and how she and her family manage to tame it. Once he gets to Schuyler the book gets much better. His love for his daughter really shines through and despite her "monster" Schuyler is a lucky girl to have such truly devoted parents who go to the end of the world for her. It was interesting to read about how the family responded to the grief and frustration of their child's diagnosis and how they learned to cope with it. I am grateful that he shared those personal experiences with his readers.
I was a little uncomfortable when he was describing the process of fighting with the school to get the right device. While parents do know their child best, some often do have unrealistic expectations. I can sympathize with the professionals who only saw the child who repeatedly didn't respond well to the formal and informal assessments. Despite their best efforts, training and experience they could not break through to her due to their limited resources. It's unethical for a professional to recommend that another funding source pay for a communication device that a child has not tried or has not been successful with. In this case it all turned out very well with the PRC device and I'm happy for them.
As an SLP, I salute this family for encouraging use of the device in all environments once they got it and advocating for her (i.e. when the school took it away). Too many times these incredibly expensive and useful tools become incredibly expensive paperweights and I believe that her success with it was largely due to their commitment to use it.
Thanks for sharing your story.
I was a little uncomfortable when he was describing the process of fighting with the school to get the right device. While parents do know their child best, some often do have unrealistic expectations. I can sympathize with the professionals who only saw the child who repeatedly didn't respond well to the formal and informal assessments. Despite their best efforts, training and experience they could not break through to her due to their limited resources. It's unethical for a professional to recommend that another funding source pay for a communication device that a child has not tried or has not been successful with. In this case it all turned out very well with the PRC device and I'm happy for them.
As an SLP, I salute this family for encouraging use of the device in all environments once they got it and advocating for her (i.e. when the school took it away). Too many times these incredibly expensive and useful tools become incredibly expensive paperweights and I believe that her success with it was largely due to their commitment to use it.
Thanks for sharing your story.
July 26, 2008
A lot of people have been waiting for this book for a long time, and thank goodness it was well worth the wait. Many of us first encountered Schuyler either just before or shortly after her birth, through reading Rob's web site, then called "Darn Tootin'" (now called "My Beloved Monster andMe"). We watched as Rob and Julie struggled with growing awareness that Schuyler's slowness to talk was more than just slowness. We cried with them as they learned of her "monster," Congenital Bilateral Perisylvian Syndrome (CBPS), we cheered as Schuyler got and began to master her "big box o'words," a machine which gives her a voice, and surpassed all predictions for what she would be able to accomplish.
Now Rob has put the whole story in book form, a well-written saga which is as easy to follow as a novel, with (for those who are coming cold to Schuyler's story) all the elements of suspense that you would find in a mystery story. Through it all you watch two ordinary individuals interact with an extraordinary child and learn how the experience changes all of them.
No one looking at Schuyler can fail to fall in love with this beautiful little girl who prefers King Kong to Barbie, who loves dinosaurs and butterflies. It is unfortunate that we don't know how the story ends, as this is a work in progress. But the story thus far is a gripping one and I suspect we'll all be around for the sequel, whenever that comes.
Now Rob has put the whole story in book form, a well-written saga which is as easy to follow as a novel, with (for those who are coming cold to Schuyler's story) all the elements of suspense that you would find in a mystery story. Through it all you watch two ordinary individuals interact with an extraordinary child and learn how the experience changes all of them.
No one looking at Schuyler can fail to fall in love with this beautiful little girl who prefers King Kong to Barbie, who loves dinosaurs and butterflies. It is unfortunate that we don't know how the story ends, as this is a work in progress. But the story thus far is a gripping one and I suspect we'll all be around for the sequel, whenever that comes.
April 11, 2009
I just started this book a couple of days ago. My wonderful sister-in-law let me borrow it. I am really enjoying it so far. disorders fasinate me. I know that is weird and possibly sad. but I find it interesting. I can't imagine what is that must be like is have a "special needs" child. I know Rob (the author) does not like that title. I will update you with more when I am finished.
ok so I finished. It was wonderful..the child, the parents, the teachers in the Plano ISD, and the love the dad had for his daughter. I really enjoyed it. It was easy to read but brought attention to many things I had never thought of before. Such as whom to go to for help as a parent of a child with special needs etc. I would recommend this book to anyone especially anyone with children or who work with children.
ok so I finished. It was wonderful..the child, the parents, the teachers in the Plano ISD, and the love the dad had for his daughter. I really enjoyed it. It was easy to read but brought attention to many things I had never thought of before. Such as whom to go to for help as a parent of a child with special needs etc. I would recommend this book to anyone especially anyone with children or who work with children.
January 22, 2013
It isn't very often that I give a book 5 stars, but this book really connected with my heart. As the mother of a son, who has his speech questioned countless times, I thought I might have some what of an understanding of these people were going through. How wrong I was. I don't think that I could even imagine what a challenge that they were presented and continue to fight through. I am so amazed by the honesty of this story that I will recommend it to other's to read. He doesn't pull any punches about he feels and how he really reacted to certain situations. I really hope that there is a second edition as I want to hear about Schuyler's continued success in her journey of life.
May 7, 2013
From a discussion with the "author" in a blog about the language used in "Schuyler's Monster", my answer to his non-existent argument (basically he went to say "We have to agree to disagree"):
Rob - No, I do not agree with you (not even in the disagreeemnt) since the language to express to refer to your daughter is disrespectful and what you have to say in your book adds nothing to a serious discussion to the topic... only a narcissistic view of seeking comfort in self-indulging and self-pity which is, truly, ridiculous.
Also, if you don't agree with what other people have to say about your pamphlet, don't look into publish your garbage again.
Rob - No, I do not agree with you (not even in the disagreeemnt) since the language to express to refer to your daughter is disrespectful and what you have to say in your book adds nothing to a serious discussion to the topic... only a narcissistic view of seeking comfort in self-indulging and self-pity which is, truly, ridiculous.
Also, if you don't agree with what other people have to say about your pamphlet, don't look into publish your garbage again.
February 2, 2009
This book wasn't very good. It was mostly about how the father coped with his daughter's disability and not as much information about his daughter herself. And not to mention he coped with it by cheating on his wife and whining throughout most of the book. The only interesting part for me was at the end when it was describing how Schuyler (the little girl in the story, she can't speak because of a brain disorder) learned to use a voice box and her experience going to a school where she was in a room with all students who couldn't speak and needed voice boxes.
This entire review has been hidden because of spoilers.
February 7, 2009
This book caught me by surprise -- I picked it up from the library during a dry spell and ended up reading it one sitting. The author has a likable, quirky style, the story is compelling, but I found the most fascinating aspect to be the technology that comes to the rescue when things are most desperate. 25 years ago, this smart, funny little girl would have been out of luck, but today, thanks to an unseen army of scientists and computer geeks, and of course, her stubborn parents insisting on obtaining her "Box of Words," she can communicate. Yay, Schuyler! Yay, computer geeks!
May 4, 2009
I used to read the author's blog years ago and remember reading about Schuyler and her "big box of words." It's nice to get the full story, which also brings up (though not explicitly) larger issues of disability and special ed politics. Thing is, the author struck me as kind of a jerk in the book, something I never thought about him while reading his blog. I think my problem was that he spends too much time explaining how angry he was, for years, at pretty much everyone, and not enough time actually talking about Schuyler and the basis for that anger.
July 27, 2015
I'm a speech therapist so I was mainly interested in Schuyler's condition and how it affected her speech. That part of the book was very interesting... the memoir of the father's entire life wasn't so much. This book could have done better with a more savvy editor.
January 14, 2009
interesting, not all that well-written
January 13, 2012
I wasn't really a fan of this book. It focused more on the dads problems and own issues rather than the daughter
November 25, 2020
This book is basically about two people: Schuyler and her dad, the author. I give five stars to the biography of Schuyler and four stars to the autobiography of her dad. Naturally, I wish the book had been more about Schuyler. But how do you do that? How can you tell the story of a person who doesn't have words or speech? A problem indeed! All I can say is that in the last third of the book, when Schuyler finally gains some measure of communication (I don't want to say too much because of spoilers), her personality really starts shining through and the book become an absolute joy to read.
There are many good points to this book. Her father was (is?) a long-time and very successful blogger, so he has a clear voice and is comfortable with the confessional style. He does not shy away from criticizing those who should be criticized. He does not hold back from talking about his own limitations as a father and as a husband, and he does not sugar-coat the tensions that Schuyler's condition placed on his marriage.
Also, this book will be valuable to other parents of special-needs children because it shows how determined advocacy by the parents can make a huge difference. I think that this part of the book will be inspiring and almost a road map to other parents in that situation. "Determined advocacy" means going to the school board and insisting on the things the child needs, and not being afraid to pull up stakes and move if the needs can be met better in another place.
For people in the medical profession, this book will be an uncomfortable read. Yes, medical science succeeds in finding out what is wrong with Schuyler. But it takes too long, there is not enough compassion and they give the Rummel-Hudsons almost no guidance after the diagnosis.
Finally, one "caution" sign on this book for other parents of special-needs children is the unusually happy ending. Probably every parent has a fantasy that there is a magic button they can push that would somehow make their child whole and "normal" again. In many conditions, such as autism, there is no such button. In the case of Schuyler, who was not autistic, there was an intervention that, though it didn't make her "normal," did give her the opportunity for a much more normal life. I wish that the book had an epilogue that could update her story through adolescence. I read some of the author's blog posts (though they are rather sparse in recent years) that suggest that it was not "happily ever after" by any stretch. Maybe I'm too nosy or too cynical, but I'd rather have the uncomfortable truth than a perhaps slightly too happy ending.
All in all this was a great and emotionally satisfying book, and I'm so glad that Schuyler finally had a chance to be Schuyler.
There are many good points to this book. Her father was (is?) a long-time and very successful blogger, so he has a clear voice and is comfortable with the confessional style. He does not shy away from criticizing those who should be criticized. He does not hold back from talking about his own limitations as a father and as a husband, and he does not sugar-coat the tensions that Schuyler's condition placed on his marriage.
Also, this book will be valuable to other parents of special-needs children because it shows how determined advocacy by the parents can make a huge difference. I think that this part of the book will be inspiring and almost a road map to other parents in that situation. "Determined advocacy" means going to the school board and insisting on the things the child needs, and not being afraid to pull up stakes and move if the needs can be met better in another place.
For people in the medical profession, this book will be an uncomfortable read. Yes, medical science succeeds in finding out what is wrong with Schuyler. But it takes too long, there is not enough compassion and they give the Rummel-Hudsons almost no guidance after the diagnosis.
Finally, one "caution" sign on this book for other parents of special-needs children is the unusually happy ending. Probably every parent has a fantasy that there is a magic button they can push that would somehow make their child whole and "normal" again. In many conditions, such as autism, there is no such button. In the case of Schuyler, who was not autistic, there was an intervention that, though it didn't make her "normal," did give her the opportunity for a much more normal life. I wish that the book had an epilogue that could update her story through adolescence. I read some of the author's blog posts (though they are rather sparse in recent years) that suggest that it was not "happily ever after" by any stretch. Maybe I'm too nosy or too cynical, but I'd rather have the uncomfortable truth than a perhaps slightly too happy ending.
All in all this was a great and emotionally satisfying book, and I'm so glad that Schuyler finally had a chance to be Schuyler.
August 26, 2024
This is not a book about a child and her disability--it's a memoir of a parent who places himself front and center, and makes his daughter's story all about himself. He crowds out any perspective on the issue he ostensibly writes about, instead crying for sympathy, constantly, throughout. His characterization of his daughter as "broken," for instance, is meant to illicit sympathy for him, the hero of her story, in his struggles to help her. Very little of Schuyler actually comes through since her father is so thoroughly self-involved, but most of his struggles end with him insulting well-meaning people whom he sees as adversaries, rather than allies in her support.
No one isn't blamed for their best effort in trying to help because Daddy is firmly front and center. In the process, his embarrassing self-pity and obnoxious focus on his ego needs leads him into mortifying personal confessions: he details how he cheated on his wife (which he excuses with reference to his daughter's condition--how's that again?), how he regularly insulted and undermined professionals in education and health-care, and how he courts attention through his blog (check it out--a swamp of personal invective and self-praise).
There are better books, by better writers--and better human beings--out there.
No one isn't blamed for their best effort in trying to help because Daddy is firmly front and center. In the process, his embarrassing self-pity and obnoxious focus on his ego needs leads him into mortifying personal confessions: he details how he cheated on his wife (which he excuses with reference to his daughter's condition--how's that again?), how he regularly insulted and undermined professionals in education and health-care, and how he courts attention through his blog (check it out--a swamp of personal invective and self-praise).
There are better books, by better writers--and better human beings--out there.
October 9, 2024
“The school would also send home the most idiotic little art projects that in our opinion had clearly been done by the teachers. There were times when I wanted to call them and say, “Yes, I know it must be traumatic when you have to change her diaper, and I appreciate that you can spell my daughter’s name in macaroni, but do you think you might take some time to perhaps fix my broken kid?”
No secret that the public special education system has any pitfalls. But let’s not tear down the individuals who have dedicated their lives to better it. The underpaid and overworked educators don’t deserve the condescension.
The class in the quote above had “one child who had to be consistently restrained because of aggressive behavior” and another child “who had self harm tendencies that caused them to throw themselves against walls” and yet this educator found the time to help a child have a normal educational experience by attempting an art project.
I understand that this perspective was shaped from the families valid experience with the public special education system …. but let’s not tear down those who are bending over backwards to better it.
Anyway off my soap box now!
*Note: aside from the comments about special educators I do feel that this book was a really honest representation of raising a neurodivergent child
No secret that the public special education system has any pitfalls. But let’s not tear down the individuals who have dedicated their lives to better it. The underpaid and overworked educators don’t deserve the condescension.
The class in the quote above had “one child who had to be consistently restrained because of aggressive behavior” and another child “who had self harm tendencies that caused them to throw themselves against walls” and yet this educator found the time to help a child have a normal educational experience by attempting an art project.
I understand that this perspective was shaped from the families valid experience with the public special education system …. but let’s not tear down those who are bending over backwards to better it.
Anyway off my soap box now!
*Note: aside from the comments about special educators I do feel that this book was a really honest representation of raising a neurodivergent child
July 29, 2017
This book wasn't what I expecting at all, it surprised me more than anything. It leads you from the birth of Schuyler up to the age of 7. And what we get is the uphill battle that this family has faced in getting an 'actual diagnosis' of Bilateral Perisylvian Polimicrogyria to then fighting for her to have a way to communicate. I'm shocked that this proved to be so difficult and they had to be persistent in order to get the aids that Schuyler needed.
I enjoyed learning about Schuyler's perseverance and happy way that she seems to view the world. And its lovely that at the end of the book, we find that she is doing okay, well good actually. She appears to have a fighting, feisty personality which I loved. Her parents are still a little bit in the world of the unknown but they will try their hardest - even moving, to make sure that her needs are met.
I enjoyed learning about Schuyler's perseverance and happy way that she seems to view the world. And its lovely that at the end of the book, we find that she is doing okay, well good actually. She appears to have a fighting, feisty personality which I loved. Her parents are still a little bit in the world of the unknown but they will try their hardest - even moving, to make sure that her needs are met.
March 9, 2022
I went back and forth between the 4 and 5 star rating, but decided that any book that is able to give me goosebumps and make me cry, is worth erring on the side of admiration.
This author has some very candid conversations about his family’s life. I appreciated his honesty and his never ending advocacy for his daughter. The picture he painted of his family was extremely relatable despite my family not being in the same boat. He is a father, and husband, who lets us peek into his world and all the struggles associated with it. The real life struggles we all face… marriage and parenting and day to day life are just hard, no matter the extra stuff/monsters we are dealt. Overall, wonderful read to put yourself in someone else’s shoes for a short while.
This author has some very candid conversations about his family’s life. I appreciated his honesty and his never ending advocacy for his daughter. The picture he painted of his family was extremely relatable despite my family not being in the same boat. He is a father, and husband, who lets us peek into his world and all the struggles associated with it. The real life struggles we all face… marriage and parenting and day to day life are just hard, no matter the extra stuff/monsters we are dealt. Overall, wonderful read to put yourself in someone else’s shoes for a short while.
October 9, 2023
This well constructed journey of Rob, his wife Julie and their sweet, challenged daughter Schuyler was inspiring reading. The journey is through tough times as parents Rob and Julie come to realize Schuyler is not developing on the usual schedule children do, most evident in her lack of speech. With a caring tone, it chronicles the struggle to find out the reason and get help for this lovely child. The search for answers has them open to many possibilities and finding answers to make the most of opportunities for Schuyler and her future. Though the author shares his inadequacies, and says Schuyler deserved a better Dad, I think he was the best. He cared, he searches and ultimately proves himself the best Dad for her. All children should be so lucky.
Displaying 1 - 30 of 204 reviews