Reviews

The author’s evolving maturity is part of the story of his little girl’s struggle to cope with a brain deformity found in only 100 or so patients worldwide.

After waxing autobiographical at some length, Rummel-Hudson presents his unique daughter, Schuyler. Not long after her birth, it became apparent that something was not right with the baby. She cried and laughed a lot, but she never made an effort to talk, except for a few disconnected, barked vowels. She could hear well enough, tests proved, but she missed many developmental milestones and was essentially mute. More than a third of the way into the book—apparently adapted from the author’s contemporaneous blogs—Dad and Mom got a singularly unhelpful diagnosis: Schuyler had “pervasive developmental disorder, not otherwise specified.” Other experts were consulted, and, when she was three, her affliction was designated as “bilateral perisylvian polymicrogyria,” which means she has a severely deformed, irreparable brain. The prognosis for this extremely rare condition, as far as doctors can tell, is dire. Seizures, lack of fine motor skills and retardation were all predicted for Schuyler, in addition to speechlessness. Her father chronicles interactions with friends, family, teachers, doctors and diverse experts as the search for help continued. Eventually, he discovered the existence of a device called an electronic speech synthesizer; to purchase this costly prosthesis, Dad asked for and received funding from Internet donors. Now Schuyler, nearly eight, uses her talking box proficiently.

Relating the battle for his exceptional daughter with nimble wit, ardor and considerable descriptive ability, Rummel-Hudson has evolved from blogger to author.

Kirkus Book Reviews

December 1, 2007

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 © 1997-2005 Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.

Publishers Weekly

January 7, 2008

(3.5 out of 4)  MEMOIR  “Special needs parents are fools, every one of us,” writes Rummel-Hudson.  “We tilt at windmills and charge into battle with the monster, rubber swords drawn.”  The monster here is a rare brain malformation, polymicrogyria, which makes his daughter Schuyler, now 8, unable to speak.  Based on his blog, Rummel-Hudson’s memoir offers a moving account of his and wife Julie’s unrelenting efforts to give their buoyant little girl a way to communicate.  Nothing comes easily.  While she’s a toddler, Schuyler’s condition, which also accounts for some motor delays, is misdiagnosed as a type of autism.  Later, her parents butt heads with ill-informed educators.  Meanwhile, a lack of funds for top-notch care and sophisticated communications tools is a constant worry.  But today, thanks to aggressive intervention and Schuyler’s own determination, she attends a Plano, Texas, elementary school, where she relies on what’s known as an Alternative and Assistive Communication device.  By punching onscreen keys, Schuyler can form sentences that are translated into an age-appropriate electronic voice.  To her family’s delight, she has plenty to say.

People

March 3, 2008

Reviewed by Vick Boughton

Amazon Review

5 out of 5 stars

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 not 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.

Rachel Kramer Bussel

Writer, editor, blogger and reading series host

Rob and I go waaaaaay back; he and I are part of a small group of people who have been keeping blogs since the Cretaceous Period of the internet (when blogs were known as “online diaries” because the word “blog” hadn’t been invented yet). Right around the time Athena was born, Rob and his wife Julie had their own daughter, Schuyler, and for me it was fun to watch and read how another new dad was dealing with it all. But then our daughter stories diverged, because Schuyler was diagnosed with polymicrogyria, a brain deformation that, among other things, left Schuyler with the inability to talk.

This could have been (and in many ways was) a crushing blow to Rob and to his wife, but the two of them rolled with it, and Rob, who had dealt with so many events in his life by writing about them online, also began writing about his daughter’s “monster,” honestly, emotionally and occasionally painfully and angrily, and with more than a little humor, bleak though it was sometimes. Those of us who had been reading Rob for a while also noticed something else; Rob, who had been something of a typical Gen-X man-child sort of guy, was growing up and becoming the adult and the father he had to be to be a teacher, protector and friend to his unusual child. Wasn’t easy, but it was getting done.

All of this has now been put into a really extraordinary book, Schuyler’s Monster: A Father’s Journey With His Wordless Daughter, which I am immensely proud to recommend to you today. You’ll meet Rob and Julie and Schuyler and go through everything they go through as family, all from Rob’s point of view. Rob doesn’t take the opportunity to clean himself up here — you’ll see his development into a grown-up, and trust me, it’s a bumpy road — and that’s all to the good, because without it the book fails. And most of all you’ll see Schuyler as Rob sees her. At one point in the book, Rob mentions of Schuyler that there’s never been a person he’s feared for more, or has been prouder of. If you’re a parent you get that, and you also get how Rob might mean it even more than you do.

Since I know the people in the book, I can’t say that I’m at all objective about it, but folks, this is a good book. Rob writes well, with humor and anger and there’s enough shaggy charm to it that from time to time you’ll forget this stuff really happened to someone, at which point it will rise up, smack you in the face, and remind you. There were more than a couple of places I teared up. I think being a parent was part of that, and knowing the people was part of it, too. But the rest of it was because of Rob, and what and how he wrote. It’s not perfect, but it’s not about perfect people, so that’s fine. I think it’s exactly right for the tale it’s telling, however, and I think you should check it out.

John Scalzi, author

Winner of the 2006 John W. Campbell Award for Best New Writer,

2008 Hugo Award for Best Fan Writer

Book review: Schuyler’s Monster

4 out of 5 stars

This memoir, full of fear and rage and disappointment and acceptance and advocacy and ferocious love, offers plenty of touchstones for parents who have dealt with diagnoses that are infuriatingly wrong or frighteningly right; know-it-all, know-nothing school personnel; and the feeling that if you don’t do anything, or do the wrong thing, you will be dooming your child.

In Schuyler’s case, the scary diagnosis -- her monster, as it’s called -- is bilateral perisylvian polymicrogyria, a rare brain malformation that leaves her unable to speak. The way her parents ultimately make an end-run around an uncooperative school system to get the right communication device, and then find another district that is like a special-ed wish fulfillment fantasy, will have you cheering. (Also, if you’re like me, a scene in which Schuyler’s dad tells off a nasty old lady in a supermarket the way you’ve always wanted to).

But maybe the most gratifying thing about Schuyler’s Monster is its demonstration of how the Internet has transformed the experience of being the parent of a child with special needs. Moms and dads faced with daunting diagnoses can hop on the Web and look up information, often becoming more expert on their child’s disabilities than the people who treat or teach their kids.

If they find a specialist who might have an answer, they can shoot that individual an e-mail directly and confer spontaneously. They can research technological solutions, and contact equipment providers.

They can write about their experiences in blogs that build communities of caring strangers. And in one particularly remarkable incident from the book, they can seek more than just moral support from that farflung village, and find funding for solutions that schools have turned down.

That’s all kinds of heartwarming right there.

Terri Mauro, author

The Everything Parent’s Guide to Sensory Integration Disorder

Amazon Review

5 out of 5 stars

This memoir is really two stories braided together.

First, the writing. Many blogketeers today have a disregard for proper English. I approached this book with reserve, knowing the author had achieved an audience as a blogger. I was astonished at how cohesive the work is put together and how elegant Rummel-Hudson’s prose is delivered. (”...I was left with the music, and I belately began to understand the soul of the sound world in which I had been living as a tourist for so many years.”)

Next, the story. This is two stories in one: his daughter’s and his own. All parents have part of their own parents in themselves and it was wise (and brave) for the author to so candidly display his parents and his own shortcomings before moving to the next generation - gentle Schuyler, who I dare any reader not to love. He and his wife are tested to provide the best possible schools, medical expertise and nurturing for their extraordinary daughter - while reveling in her uniqueness. In the end, I wanted to get on the floor and play dinosaurs with my own daughter and soak up the spirit of a child in much the way Rummel-Hudson seems to do.

Karen Harrington, author

Janeology (Kunati Books, 2008)

When the instructor of the Lamaze class that Rummel-Hudson attended with his pregnant wife said, “So the first thing the nurse will do is hand the new baby to you, mommies, so you can count their little fingers and toes...” Rummel-Hudson added, “And heads!”  Weisenheimer moments like this pepper this making-of-a-father memoir and help leaven what could be a true tale of woe.  Rummel-Hudson’s daughter, Schuyler, was diagnosed at the age of three with polymicrogyria, a rare brain malformation that causes various developmental problems: the most frustrating, a lack of speech.  Rummel-Hudson chronicles, with disarming frankness, the experience of parenting a child no one knows how to help.  His own journey includes marital problems and fights with school administrators reluctant to work with Schuyler.  His family’s trials haven’t extinguished Rummel-Hudson’s smartass side, but they’ve drawn forth a tenderness that is touching and utterly familiar:  “This love was daunting to me.  It was the rest of my life, this love...  I was Schuyler’s prisoner now, and it was in that captivity that I had achieved my life’s joy.”

Elizabeth Roca

Brain, Child

Summer 2008

Follow the honest, heartfelt journey of a father who discovers his daughter has a rare neurological disorder that leaves her unable to speak. By Plano father Robert Rummel-Hudson, this story will both compel and inspire readers on their own self-journey. “Ultimately, I hope that readers will see how a little girl with no voice but with a positive spirit and a monster’s howl could make her way in this grand rough world, and, if she can do it, then perhaps the rest of us trying to figure out our own way might just make it, too.”

Me Time Book Reviews

Texas Family

June/July 2008

Book review: Schuyler’s Monster

4.5 out of 5 stars

It is a universal truth that every parent wants his or her child to be healthy and happy; every other desire for them becomes secondary. When your child is born, you hold your own breath until you hear your baby take his first breath, and you wait for the doctor to say “You have a healthy baby!”

Imagine that you have a little girl who appears perfectly healthy, but as she grows older, you get a growing sense that something is wrong. Robert Rummel-Hudson and his wife Julie experienced that with their daughter, Schuyler.  Robert began a blog about their experiences that became the book Schuyler’s Monster: A Father’s Journey with His Wordless Daughter.

Schuyler was a beautiful baby, and as she reached age two, it became apparent that she did not talk like other children of her age did. She didn’t say ‘mama’ or ‘dada’. Schuyler could pronounce vowels, but no consonants. She babbled a soft language that seemed to belong only to her.

At her eighteen month checkup, her doctor asked Robert and Julie if Schuyler had any speech. With each successive question Dr. Simon asked them about Schuyler, a sinking feeling that something was wrong became more pervasive.

Dr. Simon scheduled Schuyler for a hearing test. She failed her first test, and a second, more intensive test was given, which Schuyler passed. She could hear, but she couldn’t or maybe wouldn’t, talk. As Schuyler turned three years of age, other issues emerged. Toilet training was difficult, and she seemed to have low muscle tone and fine motor skills problems.

Robert and Julie lived in New Haven, and so had access to the Yale Child Study Center. Occupational and speech therapists worked with Schuyler. At this stage, Julie believed that it would be best to teach Schuyler sign language so that she could communicate with people.

The speech therapist opposed this idea, believing that it sometimes encourages speech-delayed children to rely on sign language rather than learn speech. This was the start of many struggles that Julie and Robert would face as they disagreed with experts on what was best for Schuyler. 

They still did not have an answer as to what exactly was wrong with Schuyler. An MRI was given, and when Dr. Simon and her colleague showed Robert and Julie the results, it was shocking. Schuyler’s MRI showed that her brain has huge sections that were grey.

Those sections became known as Schuyler’s Monster. She had brain damage that had been with her since before birth. Called bilateral perisylvian polymicrogyria, it was extremely rare, and incurable.

Robert and Julie were devastated. All of their dreams for their daughter evaporated. After seeing a renowned expert in Detroit, they were told that she wouldn’t get better, but she probably wouldn’t get worse either. They did have to worry about her having seizures as she got older, seizures that could cause severe damage or even death.

How does a parent process this information? Where do they go from here? This can tear a family apart, and Robert is honest about how he and Julie drifted away from each other in an attempt to lessen the pain of the everyday sadness that hung over them.

The most moving chapter in the book is a letter that Robert wrote to Schuyler. It was written on Christmas night, after an unhappy day when Schuyler became frustrated with her inability to communicate with her parents.

Robert shares his feelings of frustration and guilt. He feels that he is a failure and a fraud as a father. He is sorry that he is not the father she deserves. He’d give anything to fix what’s broken, and his “heart breaks in two every night” for her. Your heart will break reading this letter.

One of the main themes of this book is how fierce parents must be in their fight to get their children the proper treatment and services from schools. On top of dealing with the health of their child, these parents also have to educate themselves on their legal rights.

Robert and Julie fought with more than one school district to get Schuyler the best education possible. They researched Alternative and Augmentative Communication (AAC) devices that would allow Schuyler to use a computer to communicate her words. The first time Robert and Julie heard a voice from the device speaking their daughter’s words, they cried.

When they discussed this with Schuyler’s teachers, some were responsive, others were not. The schools had to educate everyone on a limited budget, and Robert and Julie were responsible for getting the best possible education for their daughter. Frequently, these two paths collided rather than converged.

As Schuyler got older, she realized that she was different from other children. Robert and Julie dreaded this day. They were living in Austin, Texas, a progressive community, but were unhappy with the schools. In a stroke of luck, they met some teachers in nearby Plano, a more conservative community. 

At this school, there were teachers and therapists who were excited about working with Schuyler. They had an entire class of children who used AAC devices to communicate. Schuyler would spend part of the day in this class, and part mainstreamed with other students. This was a dream come true for Robert and Julie!

Schuyler is a beautiful girl, so full of life and curiosity. She is ethereal, fairy-like at times, yet she adores dinosaurs and monsters. Although her life is difficult, as she grows older she becomes more aware of her difference from others, and she accepts it with grace. She teaches her parents about perseverance, unconditional love and true happiness.

Schuyler’s Monster is one family’s true story about dealing with every parent’s fear. Rummel-Hudson shares his fears, doubts, and anger at having to deal with Schuyler’s monster. He is honest about the indelible pain it has caused him and his wife, but he also speaks of the incredible joy that Schuyler has brought to their lives.

We all play the hand that we are dealt in life. Knowing that there are many people like Robert, Julie and Schuyler who play their difficult hand with grit, tenacity and love makes this world a much better place in which to live. I give Schuyler’s Monster four and half stars, and thanks to Rosemary for recommending it.

Diane LaRue

The Citizen, Auburn NY

July 6, 2008

The Citizen Copyright ©2008

Despite the fact that definitions of the “average” family proliferate, the average family in fact does not exist.

If it did it would spend roughly 1,400 USD (1,040 EUR) on its yearly electric bill, would drive a Volkswagen Beetle or Toyota Corolla (purportedly the best-selling cars in history) each family member would live to be 67 years old and would have less than two (but more than one) equally average children.

As Robert and Julie Rummel-Hudson and their daughter Schuyler (Sky-ler) are aware, however, there is as little chance that any child is “average” as there is that any parent is.

Because we all lead complex lives, we may each find something with which to identify in Schuyler’s Monster: A Father’s Journey with his Wordless Daughter.

Rummel-Hudson is very frank about the struggles of learning about and dealing with the special needs of his daughter. But even as he shares his inner conflicts, the love he feels for this special child reaches out and draws the reader in to share in the developing bond.

Schuyler’s story is one about family relationships that is well worth reading.

Gina Stepp

Family Matters, Vision Magazine

September 22, 2008

What We As Physicians Can Learn From Our Patients

Neurology Today

18 December 2008; Volume 8(24); P 18-19

HARBERT, MARY JO MD; TRAUNER, DORIS MD

Dr. Harbert is a child neurology fellow at the University of California-San Diego (UCSD) Medical Center. Dr. Trauner is professor and interim chair of the UCSD department of neurosciences.

As neurologists, we often have to relate bad news to patients and families about a loved one’s diagnosis. Too often, physicians fall back on textbook descriptions of prognosis for specific disorders, rather than taking each patient as an individual. A classic example of this is described in Schuyler’s Monster: A Father’s Journey with His Wordless Daughter, a poignant book by Robert Rummel-Hudson.

The author chronicles the true story of his daughter Schuyler and how she came to be diagnosed with bilateral perisylvian polymicrogyria (BPP), discovered as a result of her workup for profound language delay.

BPP is an extremely rare condition that occurs as a result of a migration defect in the brain early in embryonic development. The brain shows smaller and more numerous gyri in the perisylvian areas than are seen in a normal brain. Symptoms may be present at birth or may not become apparent until early childhood. Common symptoms include bilateral facial weakness, difficulty feeding, and seizures. Children often have some degree of global developmental delay, but the prognosis is variable. The diagnosis is made by performing a MRI of the brain.

AN ‘EMOTIONAL ROLLER COASTER’

From the beginning we were captured by the author’s irreverent humor - particularly describing his wife’s pregnancy and delivery, which we one can only hope she was allowed to edit prior to publication. The author’s humor is a constant throughout the story, and that is required to balance the sadness and devastation so clearly apparent later when the diagnosis is first presented. Quite frankly, the book is an emotional rollercoaster, which in our experience as clinicians, accurately reflects the mental state of both parent and physician faced with a diagnosis as catastrophic as BPP.

As physicians, we have all experienced the horrible sinking sensation and ensuing sadness when discovering that we have a bad diagnosis to impart, particularly malformations of the brain. For most of us we are not usually in the position of experiencing this situation from the parent’s perspective. Rummel-Hudson offers a heartrending glimpse of that - with brutal honesty.

Upon first learning of Schuyler’s diagnosis, he writes: I cried for the future, for the life I had always imagined for my little girl, a life that would never ever be what we’d imagined it to be…I cried at the word ‘retardation’ and the atom bomb of low expectations it carried with it. I cried at the idea of Schuyler growing old in our care and never knowing a life on her own terms.

Particularly disturbing were the obstacles created by both Schuyler’s school and insurance company when her parents were trying to obtain a communication board for her. The school wanted her to use a simpler version of a communication board and disagreed with the parents about which model should be ordered, because they doubted she would be able to handle a more complex device. The insurance company put up its own obstacle in advocating for a cheaper, simpler version. This story is not shocking to any of us in clinical practice. However, the author used his blog - available at www.schuylersmonsterblog.com - to raise $10,000 (in three weeks) to buy Schuyler the expensive and more complicated model, and her language production flourished.

This reaffirmed our general observation that parents really do best know their children and their abilities. Unfortunately, from the father’s account, the parents were not provided with much hope or support in their efforts from the health care professionals involved in Schuyler’s evaluation and care.

We have a busy child neurology clinical practice that focuses on neuro-developmental disorders, including language impairment and autistic disorders, as well as many children with structural brain malformations. Since reading Schuyler’s Monster, we have recommended it to parents, particularly parents of children with brain malformations. We believe that it reinforces fundamental lessons, the most important being that the parent (not the physician, not the teachers) will always be the strongest advocate for their child.

 

The Rummel-Hudson family was constantly on the alert for and questioning physicians and teachers they thought were underestimating Schuyler’s abilities. For example, they were told after detailed developmental and psychological assessments that their child had pervasive developmental disorder and developmental delay.

The Rummel-Hudson family were told the good news that Schuyler wasn’t autistic. The family moved to a different city to provide a better education for her, seeking out schools that would provide an educational plan more suited to her needs. Schuyler is currently attending a special school that focuses on augmentative communication devices.

An important message for readers is that each patient should be considered as an individual, not a diagnosis, with individual variations despite having a generic disorder.

For doctors, this book reminds us that children with developmental disabilities also need to be challenged, just as neurotypical children do, so that they can maximize their potential.

Neurology Today

American Academy of Neurology

December 18, 2008

Fully formed

by Beth Hawkins

In Schuyler’s Monster, a father discovers his daughter’s personality long before she can express it in words

One of my favorite things is to lock eyes with a child. So often their gaze is wholly open, simultaneously soft and intense, free of those gauzy layers of self-defense we acquire as the world kicks us around a little. Adults usually look away within a few seconds, singed by the too-frank exchange. But kids will look right back at you with curiosity, mirth, pride, fright, anger, or love. They haven’t yet learned to stop before they reveal too much.

My kids surprise me all the time, but there has never been a moment when I have doubted they are exactly the fully formed soul I saw in their newborn eyes. Obviously, upon looking into my youngest’s eyes at birth, I couldn’t know he would love baby animals or be a fusspot about his socks. But I knew he wasn’t a social creature like his brother or father. Much of his real life would take place in his imagination.

I never expected that babies arrived so completely, totally — well, them. Before I had mine, I thought a parent’s job was to try to influence a child’s unfurling personality. To correct and adjust and refine until there were as few rough edges as possible.

Parents do help shape character, yes. But a decade into the adventure, I have come to believe that a much more important task is being the anointed keeper of that inborn kernel of personhood, the full-grown, car-driving, credit-card-wielding advocate for its potential. I don’t mean trying to smooth every speed-bump from your babe’s road of life, I mean holding that kernel uppermost in your mind’s eye.

I spent the weekend with Schuyler’s Monster, a book written by a father who did just that to remarkable effect. Robert Rummel-Hudson’s memoir is ostensibly about his quest to get help for his daughter, Schuyler (SKY-ler), who was born with a brain deformity — her monster. But it’s really a story about a man who trusts his intimate knowledge of his child’s spirit more than well-meaning experts who would sell her short.

Schuyler peers out from the book’s cover with an impish grin, but one that’s only discernable from her crinkled eyes because one hand covers her mouth. She can babble, but a rare genetic disorder has left her wordless. Still, her eyes say speak volumes: she’s up to mischief, and she’s inviting company. When we meet Rummel-Hudson and his wife, Julie, they’re both working as managers for Barnes & Noble. Julie is pregnant and Robert is filled with self-doubt: “My own models for fatherhood weren’t very promising.”

Schuyler’s arrival is uneventful. But when she’s still not speaking at 18 months, it’s clear there’s something wrong. Supposed experts eventually say she has a form of autism, but Robert knows this is wrong. Schuyler is quite social and, the Rummel-Hudsons alone are convinced, very bright. But the family is also broke, so pursuing better diagnoses takes Herculean effort.

Throughout, Robert struggles against feeling responsible for Schuyler’s state. His helplessness tumbles into depression, which snowballs into a marital crisis. “I was convinced that if given a choice, Schuyler would ultimately be better off with a Ghost Father, one whose imaginary attributes she could invent and build as needed through the years,” he writes. “Ghost Father would be infinitely preferable to Living Failure Dad, with all my faults and inadequacies there for the world to see.”

When answers finally do come, it is in part because of Robert’s blog about the family’s efforts on Schuyler’s behalf. At one point in the saga, the family is living in Austin, Texas, but wants to take Schuyler to a Chicago specialist. When Robert blogs that their two retail paychecks won’t cover the trip his e-mail inbox starts to fill up with PayPal donations from people invested in the little girl. Schuyler’s ultimate diagnosis: polymicrogyria, a very rare congenital syndrome in which, essentially, the brain has too many wrinkles. She will never talk.

It’s devastating news, but again her father refuses to accept the bleak future predicted for her. Through a strange bit of serendipity, Robert learns of two companies that manufacture alternative and augmentative communication devices — essentially tiny laptops with cascading touch-screen picture menus and synthesized voices that enable users to “speak.”

Eureka? Not hardly. The Rummel-Hudsons were mired in the fresh hell that is the special ed system, whose experts had their own thoughts. Schuyler was not smart enough to operate the machine, they opined; it wasn’t worth trying. Again, readers of Robert’s blog ponied up the $10,000 it would cost to prove them wrong.

And wrong they were. Schuyler mastered the gizmo in a weekend, only to unleash one of the most heartbreaking chapters of the entire saga. Confronted with a little girl who was suddenly able to make herself understood, the teachers who doubted she would live up to the technology decided Schuyler’s new voice was potentially disruptive and hit the mute button.

“In the end, stripped of her device and her support and even her basic sign language, standing alone against a mean girl or a hard world and armed with nothing more than her will, her sense of justice and her animal howl, Schuyler nevertheless knew that, monster or no, she still had a right to move through the world on her own terms,” Rummel-Hudson writes. “She was going to be okay. She was always going to be okay.”

There are plenty of miracles large and small in this slim memoir. But to circle back to the beginning, to the eyes as gateway to the soul, the most amazing element of Rummel-Hudson’s story is Schuyler herself. “Schuyler knew she was different, although I couldn’t really tell you when that happened,” her father notes. “More clear was how she wasn’t afraid of that difference, not like I was. She behaved like a tourist from some foreign land, trying to make herself understood. She became frustrated occasionally, but not nearly as often as you might expect. Mostly, Schuyler seemed amused, as if the rest of us were engaging in some stupid, jabbery behavior when really, we would all be much happier with some hand signs and excited vowels and a good, loud laugh.”

Somewhere in the process of advocating for his daughter’s undaunted spirit, Robert comes to believe in himself as a father. Schuyler’s Monster paints a haunting picture of the soul’s need to be known, as well as the painful way in which becoming a parent forces one to recognize one’s weaknesses and limitations.

In my house, no one is ever wordless, which can drive a fundamentally introverted mother to tears sometimes. Sometimes our evenings end with frayed nerves. But sometimes, when I’m not too tired and I can keep my own concerns in perspective, I can hear through the chatter. What I hear is exuberance, the polishing of those brilliant kernels. At the end of the night, I’m still relieved to leave the wee folk to their stuffed animals and their nightlights. But I’m also grateful to be reminded that sometimes, my troubles are also my joy.

Beth Hawkins is a Minneapolis writer.

Shelf Life

Minnesota Parent

February 2009

Copyright 2007 Minnesota Premier Publications

Hipster, Interrupted

by Cynthia Shearer (W.L. Adams Center for Writing and the Department of English at Texas Christian University; author of the novels The Wonder Book of the Air and The Celestial Jukebox.)

So I was lurking around the Legacy bookstore website this one time, and saw some comments posted by a "Citizen Rob" which made me think about Citizen Kafka at WFMU in New York, one of my favorite radio stations, whose motto is "No Hits, All the Time." Turns out, "Citizen Rob" is one Robert Rummel-Hudson, a young hipster dad from Plano. He published a memoir with St. Martin's Press in early 2008, Schuyler's Monster, about his speechless daughter's rare disorder, bilateral perisylvian polymicrogyria, or polymicrogyria, for short. That's odd, I thought. How did I miss knowing about this book?

"The book is a love letter to my daughter," Rummel-Hudson told a freelance reviewer for the Dallas Morning News around the time of its release, who seemed not to catch the hint that this is not your mother's "special needs kid" book. Other "reviews" tended to simply define the disorder itself rather than comment on the formidable writing gifts of the book's author. That unwieldy word, polymicrogyria, tended to hijack the book reviews,exactly like it hijacked Rob and Julie Rummel-Hudson's life. Book coverage defaulted to a pattern of really excellent PSA's about the disorder without giving Schuyler's dad a proper welcome as a writer, as a viable and welcome voice in this wilderness of words we inhabit. That's how I missed knowing about this book.

One account labeled the family "special ed nomads," to describe their struggle to get adequate education for their daughter. Kirkus and Library Journal adeptly summarized the struggle of two young hipster parents as they absorbed the knowledge that their stunningly beautiful and charming little girl was never going to be able to speak to them, possibly giving rise to the perception that Schuyler's Monster was of interest only to parents of "special needs" kids, that it should be shelved only among medical disorders or amidst speech pathology annals. It's great that this book will find parents who must navigate the strange shoals of special education, but this book needs to find a larger audience, and that larger audience needs to find this "Citizen Rob" who wrote it.

There is no other story like this: a father with an ex-pat West Texan's love of words and music, yet he has a daughter who cannot speak. He responds by situating his story inside a larger story:

Before words, there was music. . .I should stop here and tell you about my hometown. Odessa is our setting, the grubby West Texas oil town in which I grew up. I don't know what it would have been like to spend a childhood in the 1970's in Normal America,but in Odessa (aka Slowdeatha, Odessalation, and my personal favorite, Jimbobwe), radical change wasn't remolding society. Even now, when I go back to see my family and drive Odessa's dusty streets, I feel as if I've hit an air pocket in time, where people might still be voting for Eisenhower and running duck and cover drills in school. Odessa was a rough town with a past rooted in the unforgiving world of oil production (my father left the oil business after watching a co-worker burn to death in an industrial accident), but it was also filled with church-going citizens and wholesome Ronald Reagan values and gritty West Texas characters. I, on the other hand, was a snotty teenager whose idea of country and western music was "I Wanna Be a Cowboy," by Boys Don't Cry and the Dead Kennedys' cover of "Rawhide." Naturally I couldn't wait to get out.

As a young man, Rummel-Hudson was deeply interested in music, and composers such as Shostakovich, "who served in the great Russian tradition of the yurodivy, or 'holy fool,' like King Lear's faithful servant who was allowed to speak the truth about the king and remain unharmed, serving as he did a higher purpose." In answer to his conflicted feelings about war and violence,a teacher played Benjamin Britten's War Requiem and showed him Britten's scores for Wilfred Owens' poetry, and he began to understand "what it meant to be a pacifist."

So far, so good. The normal trajectory of an artist. But this man's story is like that old Don Henley song, "Like any young man, I had some things I wanted to say. Ere I could begin, the world got in my way.”

Citizen Rob held various jobs that did not hold his interest, and blogged in the early days of the internet, while gradually becoming "some sort of populist writer" online in a voice he describes as "Everyman Dumb Guy." On his way out of a bad "starter" marriage, he met the love of his life, Julie, while teaching summer sessions at Interlochen, a program for gifted young artists. They married, they had a baby girl. Time passed. The baby didn't speak. As more time passed, they understood that she would never speak normally. They acquired a new word in their vocabulary, polymicrogyria, n., medical term referring to a rare condition which hijacks your baby's life, plus yours, right before your very eyes.

We got lucky two ways, when Rummel-Hudson decided to write this book. First, don't let him fool you with that Everyman Dumb Guy routine. Schuyler's Monster was authored by Everyman Articulate Guy, who can describe the contours of a life most of us have never encountered, with precise and lyrical honesty. He nails the Kafka-esque bureaucratic undertow of "special education," chronicling the peculiar twistedness of an Austin teacher who chooses order and control over instruction: when the couple raises over $10,000 unassisted by the school, to provide their daughter with an electronic talking device to enable her to communicate, the teacher retaliates by setting the machine on "mute" every day. The couple move their daughter to the Plano school system, which seems to be ready to teach kids like Schuyler. The struggle to do parenthood right is not without its cost. To Rummel-Hudson's credit, he is forthright about the sheer exhaustion and stress on a marriage that accompany high-octane parenting. He remains resolutely agnostic, but he finds his way to an admirable tolerance of belief unlike his own.

Second, as literary memoir, Schuyler's Monster is the necessary counterpoint for every busted-flush, bottomed-out, philosophically bankrupt memoir of the life-sucks-and-then-you-die genre. He began his writing life a bit adrift as an eloquent blogger; as Schuyler's father, he is on his way to becoming a high-profile advocate of educational reform. When he calls himself "Citizen Rob," it's not just a hipster's wry joke. It puts a whole new spin on Samuel Beckett's "I can't go on. . . I'll go on."

If a yurodivy is someone possessing the gift to see and hear what others know nothing about, Rummel-Hudson is squarely within the yurodivy tradition himself, using weirdly translucent prose the same way composers telegraph magic through music:

I had my first dream about Schuyler talking that fall. . .In my dreams, and strangely in the dreams of many people (friends and strangers alike), Schuyler spoke. She speaks in my dreams to this very day, and I have no doubt she'll do so for the rest of my life.

Word: Schuyler's Monster should be shelved, and sold, and taught in universities, as literary memoir. Anyone wondering what it takes to be a writer should read this book. It tells the story of a remarkable child, yes indeed. But let the record show also that it is the dogged, if a little delayed, debut of a born writer with plenty of truth-telling ahead of him. What interrupts you also creates you.

Thimblewicket

August 10, 2009