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

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.

A friend of mine, a fellow traveller on what the author hilariously calls "The slow boat to Amsterdam" (if you have a child with special needs, you'll get it!) read this book first, and told me she couldn't go to sleep before finishing it. She gave it to me, and the same thing happened---a very rare thing in a household where everyone prefers to wake at 5am, so we go to sleep early! This book has so much than many books about a child with special needs don't have. It's funny, laugh out loud funny sometimes. It's honest---no saint parents here, but the love, unconditional, strong enough to almost kill you, love comes through the pages so well. It's hopeful but realistic, and it's sad and also extremely happy and triumphant about the prospects for a child with a monster in their brain, and I do love that term. I think my favorite thing about this book is that the author and his wife are NOT RICH. I don't know why it almost seems like a pre-requisite to writing a book about a child with special needs that the parents be very well off. The best example is when the parents decide Schuyler needs a $10,000 communication computer. The school district won't buy it. In so many books I've read, this would be dealt with by a passage something like "it was a bit of a stretch, but we knew how important it was and spent the money to get it". Well, for most of us, a bit of a stretch is getting the extra-large pizza instead of the large---spending $10,000 on a devise is not a stretch, it's impossible. The way people who didn't even know Schuyler came through to get the computer is one of the best reasons to not lose hope in the human race. I have a daughter who is 3, and like Schuyler, has sometimes been diagnosed with autism, at other times, we've been told she certainly is not autistic, but no-one has a clue why she is the way she is. She talks, but in a very limited way, on her own terms. She sings long complicated songs but has never answered a yes or no question. She is an amazing girl. I sometimes just sit back and marvel at her, when I let myself. But I also cry often, and wish so much that I knew what her particular monster is. I want to thank the author from the bottom of my heart for putting some of my feelings to words.

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.

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 l