37 of 42 people found the following review helpful
In Schuyler's Monster, Robert Rummel-Hudson tells a story of coming to terms with, while constantly battling, what he calls his daughter's "monster," a disease called polymicrogyria which leaves her unable to talk. She can make some sounds, using mostly vowels, and it's not until age 4 that the author and his wife even find out precisely what is wrong with her. In this incredibly heartfelt memoir, Rummel-Hudson recounts their journey from parents to "special needs" parents, navigating school systems in Connecticut and Texas in their quest to get Schuyler the best care and help she can provide.
At times, their story is bleak, but throughout it, Rummel-Hudson's overwhelming love for his daughter, as well as his belief in her, is clear. Even when things seem at their worst, the couple never let their daughter sense their doubts about her being "broken," as Rummel-Hudson writes. Even though he uses this terminology for her and her brain, on a certain level, he seems to know that for whatever mysterious reasons (his battles with faith and a god he doesn't quite believe in are covered in the book), Schuyler has turned out the way she has.
Some of the best moments are focused solely on Schuyler. She is a "rock star" amongst her young classmates, in various schools, looking the part with purple or red hair and pink leopard print, and drawing her peers around her. When she stands up to (and punches) a bully at a mall playground who's just shoved her and teased her for being a "retard," it's hard for even those of us who are as nonviolent as they come to cheer.
Rummel-Hudson, who has been documenting his life, and his daughter's, on his blog for many years, thankfully doesn't bring the blog into play too much in the book, save to show how wide of a support network he's garnered. When Schuyler's school refuses to purchases the $10,000 "Big Box of Words," a communications device that enables her to type on its screen and have her words voiced by the box, his readers pull together with donations to make the purchase. By the end of the book, when Schuyler and family are ensconced in Plano, Texas, land of megachurches and wealth (and decidedly not a typical home for the Rummel-Hudsons), I felt like I knew this little girl who I've never met. Her spirit permeates each page, though Rummel-Hudson is clear that he is telling his story of being a father unable to permanently fix everything that is "wrong" with his daughter. His guilt, anger, and grief are plain, but it's also his and his wife's perseverance, in not accepting the status quo, that have helped Schuyler get to the place she has, using her words in all kinds of fascinating ways.
In some ways, even though Schuyler's Monster is about a very specific, rare disorder, it's also about being a parent. Rummel-Hudson and his wife learn early on that they cannot protect Schuyler from all the negatives of the world, but they also learn that for her, things aren't as bad as they may seem. She has found her own language and way of relating to people, both before and after acquiring her Big Box of Words, that works for her, and watching her develop, in the words of her father, is the real delight of this book. With sly sarcasm and a healthy dose of self-deprecation, but most of all, love, Rummel-Hudson has written a memoir I wouldn't say is sappy at all, but did make me cry, though not until the very end, and those were tears of happiness.
8 of 8 people found the following review helpful
on March 9, 2011
Schuyler's Monster is not some phantom conjured by a child and reported to live in her closet. Her Monster is real, a genetic abhoration, residing in the very structure of her brain tissue, invisible to all save the MRI machine. The monster is invisible; Schuyler is silent.
I was very excited to read this book, as I too have a wordless daughter. In the beginning I was disappointed because it felt like it was Robert's autobiography and not Schuyler's story, and to some extent that feeling carried through for the first half of the book. As I pondered the book after finishing it a couple of thoughts combined to bring this book up from a three star rating to a five. First, I thought a lot about my impatience with the author telling his story. As the parent of a severely handicapped child, I wasn't interested in the father's frustrations and emotional roller coaster. If I am completely honest, I felt just a bit of exasperation with him for not focusing on all the things that his daughter could do. As opposed to, say, my daughter.
However, as I mulled things over, several things became clear to me. The average reader does not have a daughter like his Schuyler or my Winter, and would, therefore, have no idea that a train wreck in slow motion is a pretty good metaphor for how your life, as the parent, can feel as you try to keep your child on the track. And the more I read about Robert the more I realized how eloquently he managed to express, without ever losing his sense of humor or poignancy, how one survives this kind of a life altering challenge. I identified so completely with his struggle, and that proves what a beautiful job he did in conveying the reality of our lives to someone who doesn't live it every day.
While my daughter has more medical problems and requires much more physical care than Schuyler, Robert's set of challenges are no less draining; they are just different. I have always been profoundly grateful that my daughter is too "broken" (to use Robert's word) to realize how badly she is being cheated out of a full life experience. Schuyler is a very bright little lady who simply can not speak and has some other slight physical delays. She knows just how different she is, and her parents carry that added pain of being unable to hide that knowledge from her. Robert's battle for acceptable schooling and assistive technology for his daughter is awe inspiring. Beyond a certain point, it became readily apparent that my Winter had reached the summit of her potential and that no amount of medical and therapeutic intervention would ever let her sit, stand, communicate, or a whole plethora of other things. Robert and Julie knew how intelligent their daughter was and knew how much potential she had if they could only find the tools needed to open the floodgates. They have never had the luxury of feeling that they have fought the fight and the battle is won. For them it will be ongoing for as long as Schuyler lives.
By the end of the book, I loved Schuyler. Not in some namby-pamby, gosh what a great little kid kind of way, either. I loved her in an emotionally bonded, heart breaking fashion that surprised me. And I knew in that moment of realization that Robert Rummel-Hudson had crafted a mesmerizing tribute.
12 of 15 people found the following review helpful
on February 26, 2008
As a long time blog reader of Rob's, I had been looking forward to the book since it was announced. I was not disappointed. The magic of Rob's blog and his book is that he isn't afraid to be human. He opens a window into his and Schuyler's life. You share in the moments of despair and the moments of triumph. I am a voracious reader and biography/non-fiction is my favorite genre - this is one of the most excellent books I've read in years. The very best part? If you read his blog, you get to read along and find out what happens after the book ends.
5 of 6 people found the following review helpful
on September 4, 2009
Schuyler's Monster is, in the author's own words, a love-letter to his daughter. If that's true, then this is one spectacular letter! Written with and about the understated beauty of words (and moving beyond them), it is also a testament to the unconditional love that comes when one surrenders their illusions and faces the sobering truth that our life and those in it are far from perfect and sometimes, in fact, even broken. Still, we going on loving them. Even more so. While labeled under "parenting" and medical conditions, such labels sell the book short. This memoir goes beyond diagnosis and recovery by not skipping over the murky terrain surrounding it. We laugh and cry along with Rob and his family, and are entertained and touched in ways both surprising and lasting. As a writer, Rummel-Hudson first won me over with his punchy sentences and verbal acuity, rendering powerful language both beautiful and biting. (It's ironic how a man so blessed with a gift for words ends up being saved by his little girl who doesn't, at first, have any.) What Schulyer loses in words, however, she makes up for in spirit and courage. Her infectious squeals and laughs can be heard throughout the book and it's all you can do not to hug whomever or whatever is next to you just to have an outlet for the joy she brings into your life even as a mere spectator.
Still, though the "cast of characters" is engaging and fun(ny), what impressed me about the book was not only how well written it was and how easily one could be brought to care and relate to the struggles against such an obscure brain disorder, but the candor with which Hudson offers us his story. What we get is an almost unflinching glimpse into an imperfect life filled with Rummel-Hudson's signature tender-hearted tenacity of spirit. Despite his humor, however, often this is no light-hearted read. There is much heart and humor in these pages, but it's sobering, too. Life is hard. We lose things too easily. Things we loved. Things we want to hold on to. Other things we keep though we'd rather give them up. Things we thought were ours. Things we never really had. Having read it three times now, there are moments that call up in me those lovely Leonard Cohen lines, "Ring the bells that still can ring/Forget your perfect offering/there's a crack in everything/that's how the light gets in." "Schulyer's Monster" is a testament to how the cracked and broken still let their light shine brightly, and in the process, become whole again.
3 of 3 people found the following review helpful
on October 19, 2013
Format: HardcoverVerified Purchase
I was instantly intrigued by this title as a pediatric SLP. Rummel-Hudson was honest about the frustrations I'm sure many of our parents feel going through the system, yet he did it in a way that didn't immediately put me on the defensive. Perhaps I felt beleaguered in getting through it because of my profession or perhaps it was the quality of the writing, but I felt that the pace of the book was very, very slow to get through. I found that I read it in chunks spread apart by months rather than in one short time frame. It is one of the most real depictions of the unknowns families face in the first 3-6 years of raising a child with special needs I've seen, but is also unnecessarily delves into other aspects of the author's life that, while likely important to his personal journey, didn't interest me the reader.
4 of 5 people found the following review helpful
on August 4, 2009
I am the mother of a child with multiple disabilities and one of the ways I cope with that harsh reality is by reading memoirs by other parents living a similar life. It doesn't matter what the specific disabilities are; children with special needs have parents who all experience similar feelings. In spite of the BS I hear frequently from others ("Oh, you must be such a wonderful mother for God to have given you a special child, because I know that *I* could never have handled it."), caring for a disabled child is DIFFICULT. Yes, my son brings out the very best in me - strength, patience, love, and so much more. But he has also taught me about the worst in me - the ugly feelings that we all try so hard to keep private and hidden, so much so that we all think we're completely alone with those feelings.
That's what I love best about Rummel-Hudson's memoir: he doesn't hide from the ugliness. This is not a book about Schuyler, but about the author's struggle to wrap his brain around his daughter's differences, to advocate for her with the medical and educational professionals that hold the keys to the services she needs (any special needs parent can understand what a big job that is!), and to work through his own dark depressions to be the father that his child needs. Of course, as anyone whose read the book knows, Rummel-Hudson doesn't need to tell Schuyler's story for her; soon enough she'll tell the world herself. Warmed by affection we've gained vicariously through her father, we'll all be eager to hear from her.
Thank you, Robert, for having the guts to write such an intimate book. It's vitally important that those of us whose kids are disabled tell each other the truth, because we all know that we can't count on getting it from our kids' doctors, therapists, and teachers.
4 of 5 people found the following review helpful
on August 7, 2008
Format: HardcoverVerified Purchase
I found this book in the Black Oak bookstore on a recent day trip to Berkeley with my youngest daughter (the one who was never 100% neurotypical), and it's turned out to be the best possible souvenir of a wonderful day. Unfortunately, thanks to Robert Rummel-Hudson and his improbably funny, engaging style (how many books about neurological disorders and fights with special education administrators can lay claim to having many laugh-out-loud moments??), I've gotten no housework, homework, cooking, cleaning or other reading done in the three days since I acquired the book--and I got a lot of funny looks from the other parents at the neighborhood water park today, as I sat, happily oblivious to the periodic spray of water cannons, laughing wildly like Schuyler over my book while my kids played nearby. Thank goodness the author keeps a blog, so now that I've finished the book I don't really have to say a final goodbye to him or to Schuyler--I can just keep tabs on them periodically, and make sure they're doing okay and continuing to thrive in Plano.
10 of 14 people found the following review helpful
on February 27, 2008
Format: HardcoverVerified Purchase
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 and Me"). 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.
2 of 2 people found the following review helpful
on December 11, 2011
Format: PaperbackVerified Purchase
Great, well written book. This book was required for a class, but I read the whole thing in 2 days. It's an easy and engaging read and I recommend it to all teachers, therapists or students who work with or want to work with special needs children. As a speech therapy assistant who works in the schools it was very interesting to read this story from the parent's point of view. I wish all the best to Schuyler and her family and thank them for sharing their story.
3 of 4 people found the following review helpful
on August 4, 2009
On the surface, this book portrays the poignant struggles of Robert Rummel-Hudson to understand his daughter's inability to talk. However, there seem to be deeper, less evident struggles with his marriage, and his concept of God and human suffering.
His is a raw, unvarnished, very personal account of their seemingly endless run-around, not only with medical professionals, but also with educators. No answers surfaced until Schuyler reached the age of four. Hearing the diagnosis of brain malformation, known as polymycrogyria and her form of it, congenital bilateral perisylvian syndrome, crushed their world.
Angry with God, Robert stopped at a vending machine to pick up a Dr. Pepper. This he promptly decided to toss into the seat of his car. He drove aimlessly until he found himself near an old Gothic church and stopped. Grabbing the unopened pop can, he took a furious aim at the stained glass windows near the steeple and screamed at God, demanding an answer. Why would God do such a terrible thing to an innocent child?
In his Epilogue, on the last page, Robert graphically describes an opposite encounter with God. No doubt his search to understand God and human suffering is an ongoing experience for him, Since I have taught special needs children in a "main-stream classroom," I, too, can identify with his journey!
Difficult as it was to read SCHUYLER'S MONSTER; A Father's Journey with His Wordless Daughter, I would highly recommend it to any parent, teacher, or medical provider concerned with special needs children. Robert and his wife, Julie, through dogged pursuit for answers showed that help is available, though not a complete cure.
Whether or not your special needs child is troubled with Schuyler's syndrome, it helps anyone willing to learn to be compassionate toward these very special children.
Betty L. Sheldon, author of OMNIPIECE