Extraordinary Books: Schuyler’s Monster

I hesitate to review authors on their literary technique; it would be akin to me critiquing igloo architecture. However, I will address content within the books I post on Nobody’s Normal. I recently finished “Schuyler’s Monster: A Father’s Journey with his Wordless daughter” and it absolutely fits on the Nobody’s Normal bookshelf. Robert Rummel-Hudson writes from the familiar, at least to me, perspective of a dad coming to grips with his child having a disability. The shock of the diagnosis, the instant sense of ignorance, the struggle between the professional’s expertise and the parent’s intuition, etc. While living in this extraordinary culture has moments of beautiful sunsets, it also has hurricane moments and Rummel-Hudson’s family weathered a few storms.

Reading of their intense battle with the Special Education teacher, the school board, and the system were reminiscent of the frustrating moments my friends have shared. Schuyler (pronounced, Sky-ler) was bullied by the teachers who were trusted to look out for her, using her inability to speak as their cloak. It was an appalling account. I enjoyed his retelling of their discovery of communication devices; he calls it her “big box of words.” Jeni and I have been there, along with many of you – the rose of technology and the thorn of expense.

Schuyler has something called Bilateral Perisylvian Polymicrogyria (BPP); I’ll let the author explain.

The monster has a family name, an imposing handful of syllables the doesn’t feel natural on the tongue no matter how many times you say it. Polymicrogyria. Despite its heft, however, the word breaks down into very easy pieces. Poly, or “many.” Micro, or “small,” and gyria, which are the folds in the surface of the brain, the things that make a brain look like a brain. A typical brain is composed of many different folds, but in a brain afflicted with polymicrogyria, there are too many of these folds and they are smaller than they should be.

As you might guess, mom and dad were ignorant of BPP prior to Schuyler’s diagnosis. Just like Jeni and I were ignorant of Cerebral Palsy, and most other extraordinary parents were before their child was diagnosed. It’s indicative of our Normal culture. Struggling to allow their wordless daughter to communicate, striving to get an accurate diagnosis, and investing their entire selves into their daughter’s world were catalytic for their own drifting apart. Rummell-Hudson frankly shares the destructive patterns that led to infidelity in their marriage. Their’s is a warning for all extraordinary parents to heed.

The author also shares some deep struggles he has with God, or the idea of God. Who among us hasn’t asked difficult questions? Who is immune from doubt in light of personal struggle? He is unflinching in his retelling, honest and real. Ultimately, for Rummel-Hudson. the most profound question he ponders is how Schuyler is so radiant and hopeful in spite of her diagnosis. “She is the source of my joy and my sorrow, and for all my resentment at him for giving her this burden, it is nevertheless when I am with Schuyler that I feel closes to God.”

(Please be aware this book has some rough language, deals with some unfortunate decision-making, and has at least one incident where a description that, while truthful, was unnecessary to the story and depicts immoral behavior. Schuyler’s Monster is compelling and it will resonate with many, but its a PG-17 read. Just FYI.)

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6 comments

  1. Great review – In fact, so good that I don’t feel a need to read the book 🙂 (Which means your career as a book reviewer might never take off – haha.) To be honest, after 12 years of being an ‘extraordinary mom’ (which is one label I like!) these stories all seem the same to me – from the shock to the fast-track education in a subject you had no desire to learn, to the marriage struggle, to the realization that the child has grace for the journey that leaves the parent awestruck and lacking. While I’m certainly glad I’ve read books like this – even if just to realize there are others in the boat with me – there came a time when I needed to focus on living my own story and waiting to see the plot twists God writes into it. This is what I love about blogs – We can get snapshots of other stories, and be encouraged and informed – without investing too much time or energy (neither of which extraordinary parents have much to spare.)

    P.S. Love the comparison of the igloo architecture 🙂

  2. OK, I’m frustrated since my first well thought-out reply did not show up. So now I’ll have to settle for my on-the-fly, quick thoughts.

    This was a great review – in fact, it’s so good that I have no desire to read the book. (Which means your potential career as a book reviewer might be in jeopardy – haha.) The thing is that over the past 12 years of being an ‘extraordinary’ parent, these stories seem all too familiar to me. From the initial shock, to the fast-track education in a subject there was no interest in ever learning, to the spiritual struggles and marriage tension, to the blessed realization that the child has grace to handle the trial that the parent can only stand in awe of. I guess I’ve gotten to the place where I only have time and energy to live my own story – and wait for God to unfold the plot twists and turns, joys and sadnesses.

    I’m a huge reader (common trait of a homeschooling mom), but I think this is why I love blogs. You get glimpses into other people’s stories, without the investment it takes for a whole book.

    P.S. Love the igloo architecture comparison 🙂

    1. Sorry for causing frustration. When you make your first comment on the blog I have to approve it. This is why your first comment didn’t show up. Now that you are approved, you can comment away and they will appear instantly. I apologize for the confusion.

      You are probably right about the pattern in these books, although I think there is something to learn in each of them. This one gave me a first hand account of how caring for a child can allow the marriage relationship to erode. I knew the statistics, but it was educational to hear it first hand. I also liked learning about polymicrogyria; it will add breadth to my capacity for compassion. I also appreciated seeing him wrestle with God so openly. I’m sure many people do, and his honesty will allow me to better understand others with similar questions.

      Would you advise against me writing a book about my family’s experience? Or maybe a better question is, what would you add or remove from the traditional special needs memoir to make it a worthwhile time investment?

  3. Ok, Now I want you to take one of my comments off! LOL

    I do think you should write a book about your family’s experience, because you’re right – We learn something from each one, and each perspective is unique. I might even read it! 🙂 In my first comment (or two…) I was just saying that there came a time for me – after much reading- when I was ready to stop hearing about how other people handled their child’s challenges, and get on with handling my own. After a good many books, I had gleaned all I needed and it was time to stop. And to be honest, I started comparing my responses, my marriage, my finances, my community resources, my church’s response, to the writers of the books. And usually I came up short (which is why I’m not writing a book!)

    Until Jesus comes and provides the final cure to this fallen world, we’ll always have moms and dads beginning this journey – and the starting line is always a season of soaking up any information one can get. I can already think of several aspects of your personal story that would lend credence to it. You are an able-bodied athlete whose firstborn son will not be following in your athletic footsteps. Surely there’s a story in that. You went on to have other children (many do not – or if they do, they feel ‘lucky’ to have one healthy child – and they quit while they’re ahead.) It would also be interesting to hear how this impacted your understanding of God’s love, sovereignty, goodness, justice…. See, I’m already getting excited about the book! 🙂

  4. Well done, Ryan. I’ve reviewed a few books like this for Amazon (Born on a Blue Day, Boy in the Moon) and am always impressed with the strength within common people to rise to a challenge. They’re inspirational and help me as a teacher, look at all my students–no matter their needs–with excitement over their uniqueness. I hope this shows up on my Vine list as I’d like to read it.

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