Customer Reviews

Schuyler's Monster: A Father's Journey with His Wordless Daughter

5 star:		(30)
4 star:		(2)
3 star:		(2)
2 star:		(0)
1 star:		(0)

 

 

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.

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.

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.

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.

100+ pages. That's how long it takes to find out just exactly what "Schuyler's Monster" is... unless of course you cheated and read the book jacket.

Robert Rummel-Hudson crafts a hauntingly beautiful story of unconditional love for a little girl he describes as "broken," shifting back and forth from moments of sheer frustration to simple pleasure, all of which are touching and heart-wrenching at the same time. Unfortunately "Schuyler's Monster" reads much more like a memoir of a father ill-equipped to deal with a special needs child than it does the journey of Schuyler herself, a tenacious and rambunctous pixie stuck in a world that prides itself on conformity (perhaps best then that Rummel-Hudson moved his family from the Stepford New Haven town to the much more accepting and diverse Austin!).

For those first hundred something pages, there is mention of the fact that Schuyler is different; she has trouble with potty-training, some motor skills, and she doesn't speak at all. However, the majority of the content there is dedicated to Rummel-Hudson, filled with anecdotes about his work and even his background and love of writing at a young age, which isn't necessarily a bad thing. His words are elegant, poetic, and real; each page feels like a personal conversation with the man and deep look into his psyche. It's just not what was expected from a book sub-tagged as "A Father's Journey With His Wordless Daughter."

Perhaps it is because Schuyler is still so young and has so much ahead of her that is still unknown, then, that she is almost a supporting player to Rummel-Hudson's growth within his book. Perhaps it is because while lacking in communication, he can't quite accurately document how she has been affected by her differences (he makes few assumptions and absolutely no judgments, which is refreshing coming from a father!). If anything, "Schuyler's Monster" certainly paints a clear picture as to just why this little girl is so remarkable; she has turned her father, the author, into a much better man simply by giving him something special on which to focus. I was just expecting a story that was a little more about the process of dealing with doctors, special needs classrooms, speech pathologists, and strangers who just didn't understand. "Schuyler's Monster" definitely touches on all of that, but for some reason I was expecting a little more... and for the telling to be a little less self-indulgent. Rummel-Hudson has been a writer since 1995, blogging about everything from his hometown to his little girl's diagnosis, and I guess at times this book seems to be a little more for him, a little more about him, than Schuyler and her monster. Perhaps it is fitting, then, because just like Schuyler herself, there is more to this book than meets the eye; it is not exactly what it seems to be, and you certainly can't judge it by its cover!

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.

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.

This is a story of loving (and all too human) parents, and an extraordinary child. Rarely do you find a child who has special need described with such humor. There is always love, just as there was in this story, but humor and honesty and passion have equal roles.

I work with children who have special needs. Even though none of them have the same diagnosis as Schuyler, some of the obstacles they face are the same. The most difficult, is always communication. It is what the parents want the most, the children need badly and what is all too often not given enough attention.

This is a story of Schuyler's life, from conception to present day, more or less. The reader learns all about the world she developed in and how she began to grow. We learn what Mom and Dad are like, and how they learned along with their daughter what she needed to be happy and purposeful.

I wish that more of the parents had the gumption of these two, instead of sitting in IEPs and just going with the flow. I wish that more use was made of these communication devices, and not just 10 or 20 minutes during the day. I would like to give a copy of this book to every single family in our school.

( Things would really start hitting the fan, then!)

Well done Schuyler's daddy...! Good job Schuyler's mom. Keep up the good work, because I am sure that there will be more beneficiaries from it than just your amazing little girl.

I highly recommend this book to anyone who has a child, and anyone who does not. I particularly recommend this book to anyone who works with or runs schools for special needs children...or typical children. You are the ones who need to learn to reach for the stars.

Simply put, Robert Rummel-Hudson's Schuyler's Monster is a must read for every parent and educator. With raw emotion, he tells the story of his family's journey through the maze of parenting a child who appears perfect and yet somehow, something is not quite right. Rummel-Hudson doesn't hold back, he writes honestly about his wife's and his own efforts and reactions, as well as those of all the professionals that they encounter along the way. In doing so, he has created an accurate picture of the limitations of the medical and educational services available to some. Unfortunately, many people don't even have that.

As a special education teacher for 27 years, I hate to admitted that 30 years after PL 94-142 was passed, we don't have more to offer. Public education will always be a work in progress. Perhaps Schuyler's story will help move that work in the right direction. Which is why you need to read it.

You say your not a nonfiction reader? Never fear, this book reads like a novel. Rummel-Hudson keeps the story moving, making it interesting, entertaining and humorous. Warning! You may just become a dedicated blog reader, so you can keep up with Schuyler's journey.

I couldn't put this book down. I'm pretty picky about what I read and this was a beautifully written story, worth every minute I spent with it.