These days, Schuyler is interested in writing, which of course makes me happy in the most egotistical and selfish way. She writes, and not just for class but rather because she likes it. She wants to take her imagination and put it into motion. She doesn't usually write about herself or her own life, not just yet. Schuyler creates stories, almost always of the fairy tale variety, and she peoples them with heroes and villains and princes and queens, and monsters. Always monsters, usually antagonists but not always evil. Even now, she understands that sometimes the monsters of the world simply have their own agendas, and they need to be taken seriously.
Schuyler doesn't hate monsters. She loves them, because she understands them. Monsters are misunderstood. We think monsters are scary because they're different, and she's learned the hard way that the world doesn't like different. And I've always recognized that Schuyler's view of monsters makes for a perfect metaphor for her disability. I use it because it's brilliant. I don't mind allowing the world to give me credit for this metaphor because I'm selfish that way, but like most of my views on disability and how it affects my daughter and the people around her, Schuyler is my teacher. She has been from the beginning.
The film by and large gives a respectful and accurate look at how technology can make a real difference in the lives of people with disabilities. Speech tech gave Stephen Hawking the ability to communicate his powerful vision of time and space and the origins of our universe, and in doing so made the world a far richer and better place. Not just for one man or his family, but for the entirety of human civilization. That's not too bad.
Happy New Year to everyone who takes the time to read my stuff. Here's to the future!
The grass looks green and the sky looks blue but everything else looks gray
The pine tree looks monsters and the sea looks horses in the hill
The desert looks brown and it feel tiny and alone with no one there
The mountains looks old and wise likes wizards with their masters
I feel tiny and alone with no one there in the dark cave.
I feel super tiny in the deep way of the ocean.
To help make up for the sad, gloomy Grim Reapy nature of that last post, here's a little something that Schuyler and I did tonight while practicing her marimba music for her next concert. I asked her if she wanted to share any of it with all of you, and we went through all the clips we shot and found the two she liked the most:
And then we started to have some fun, and ended up with this unedited and unrehearsed forty seconds, which is now just about my favorite thing we have ever committed to video.
Earlier this week, Schuyler and I went down to San Antonio to see our dear friends Jim and Kim, Schuyler's godparents. (Or whatever we agnostic heathens are supposed to call the folks who will take up the feeding and watering of our kid if Julie and I murder each other or get eaten by a sasquatch one day.) I was going in order to work with Jim's trombone class, and Schuyler was along for the ride. She got to see two of her favorite people in the world, and she got to miss two days of school, so it was a solid win for her. It was also an opportunity for Schuyler to get in a percussion lesson with a member of Jim's talented staff, sneaking in some actual learning amongst all the fun truancy.
Schuyler has to work hard in band, but she's staying on top of it. Her band director here in Plano continues to be fantastic. She strikes the perfect balance between accommodating Schuyler enough to keep things realistic for her and at the same time challenging her with a meaningful band experience. I've already shared Schuyler's previous concert experience, with her kind and only slightly narcissistic permission. (I know, she comes by it honestly.) Her next performance is coming up next week, and she will again be playing a multitude of instruments, including crash cymbals, the bass drum (her favorite, by a long shot) and the marimba. That last one is still quite challenging for her, requiring as it does for her to read music, a skill that she's working on and slowly improving upon. Her band director spent some of her no doubt valuable time rewriting a very difficult part for Schuyler to make it more manageable, but it's still hard enough to require a good amount of work. The challenge frustrates Schuyler, but it is also very good for her.
Schuyler spent most of the day in San Antonio observing the bands, including watching her father play, which I believe surprised her; I think in her eyes, I was like Atticus Finch shooting the rabid dog in the street. More importantly for her, Schuyler watched the other kids. They were mostly older than her, but only by a few years, and the music they were playing was harder but not drastically so. She saw how they worked together, and how they helped each other. In short, she saw how they behaved as a community, as friends working together to create something special while having fun doing so. (Disability community, take note.)
When Schuyler took her lesson, I took a few photos and then hid in the back for most of it. I eventually left the room so I wouldn't be "that parent", although honestly, I should have left them alone the whole time. (Well, what are you gonna do?) What I saw when they began was what I've observed countless times before. There was a bit of initial confusion on the part of her new teacher on how exactly to approach Schuyler, but then subtle adjustments as Schuyler showed him how she could focus and work.
Schuyler is good about teaching her teachers how to teach her, if that makes any sense. In circumstances like this, Schuyler's disability comes to the front, but she's also very quick to show that it doesn't get to call the shots. Teaching Schuyler isn't like teaching anyone else, and the good teachers recognize this but don't let it scare them off or cause them to give up on her. This was one of the good ones. She's been fortunate this year in that most of her teachers have been willing to do the work to break into Schuyler's world.
Schuyler presents as neurotypical most of the time, but only on the surface and rarely for long. Her differentness can take people by surprise, and I confess that I judge those people, often unfairly, by how they respond to that surprise. But as she embraces her new role as a percussionist in her school band, I see for Schuyler a path forward, and a way to make her way in the world on terms that are very much of her own making.
Everyone claims to value the act of marching to the beat of a different drummer, which suggests a need for that different drummer. Schuyler's got you covered.
I've had a piece of music in my head for a few weeks now, and I thought I would share it with you tonight because, well, it's on my mind. That's all. Sometimes that's reason enough, you know?
I poked around online and found a performance on YouTube, of about four minutes of music that is, I do believe, the most beautiful music I know. That's really true, and it's not small praise, either. Not to be too arrogant about it, but I know a LOT of music. Furthermore, my taste often runs toward this sort of big, weepy Romantic stuff, meaning that my head is full of a lot of Rachmaninov and Vaughan Williams and Mahler and Schoenberg (the Gurrelieder Schoenberg, not so much the "I hate you, audience! You must suffer now!" Schoenberg). And yet it's this little four-minute stretch of this little-known symphony that gets to me, and gets to me every single time I hear it.
Most people know Josef Suk, if they know him at all, as a composer of fairly light stuff. His name is funny in a middle-school-boy kind of way, and he looked sort of like a chubby little Hitler. (Not really his fault; he died in 1935.) But his Asrael Symphony was different. It was named for the Islamic Angel of Death, cheerfully enough. Suk began the symphony as a tribute and celebration of his late mentor and father-in-law Antonin Dvorak, but as he was working on it, his beloved wife died, and Suk was plunged into despair.
Buried in the middle of this gigantic, heartbreaking symphony of pathos and pain are the four minutes that I'm sharing with you. (There's more after that four minutes, and the whole symphony is fantastic. You could do worse than listening to the whole thing.) And if I played it ten times in a row tonight, I'd find myself teary-eyed ten times.
The thing is, for some reason I associate Schuyler with this music. When I listen to it, I hear pain and I hear longing and love and regret, sadness and joy stuck together like red and blue Play-Doh, forever infused but not assimilated. I hear these emotions all at the same time, as if the yearning and the love is answered by the regret and the pain mid-phrase. All those emotions, all swirling together, not mixing, not resolving, but just existing together. There is sorrow, and there is happiness floating on top of those sad waters. Or maybe it's a sad boat bobbing on the surface of a happy sea.
And now that I spell it out like that, suddenly my association with this music and my sweet, mostly joyful but sometimes sad, broken but perfect Schuyler isn't so inexplicable after all.
One of the enduring mysteries of Schuyler is also one of the most interesting, and least quantifiable. How does Schuyler see herself? The little peeks through the curtains that we get from time to time show a little girl who simultaneously wants to be like every other little girl her age and yet is deeply in touch with her own beautiful strangeness.
Over the weekend, before the Wall of Wintery Death descended on North Texas (it is admittedly a short wall, but still), Schuyler asked me to take pictures of her. In eleven years on this planet, I do think this might actually be the first time she's ever done this. I've taken literally thousands of photographs of Schuyler, but her attitude toward me and my camera have always been ambivalent at best. One day she'll learn how to get a restraining order against me, and that will be that.
But this weekend, she wanted me to take photographs of her, and she had a very specific look that she wanted to capture, including the green wig resulting from her love of a character in the movie Scott Pilgrim vs. The World and the fingerless skater gloves that have become an indispensable part of her wardrobe. This was the look she wanted to capture, and I'll be damned if she didn't look awesome. Rather odd, and rather cool.
Schuyler had to make a college logo banner for school, for an assignment tying in with "College Week". (I'd make a remark about Plano parents already worrying about college for their fifth graders, except I suspect that is now the norm everywhere. Back in the day, I started worrying about college about halfway through my senior year, but that was probably a lack of planning and ambition all my own.) Schuyler hasn't had much interest in college, aside from the campuses where she has appeared for conferences like Vanderbilt and Auburn, so we had to explain some possibilities to her.
She eventually chose Yale ("because they helped me with my brain"), but she also decided, out of nowhere, that she wanted to go to school in China, because "it would be fun!" It was hard to argue with her logic, and she never wavered from this great idea, even after I told her that she might end up working in a factory making plastic Spongebobs for Happy Meals. She is immune to my cynicism.
Schuyler is building a very interesting and diverse self-image, one that emerges in her art and her stories and, I think most of all, in the dreams that she describes to us. It is, as it has been from the beginning, a view of herself constructed equally out of parts of this world and her own. We have a game we play now sometimes called "Real or Pretend", where I name something and she tells me whether it's real or imaginary, and her answers are surprisingly pragmatic. I was surprised to hear "pretend" when I mentioned mermaids and dragons and zombies and vampires (four of her favorites). She was delighted to learn that dinosaurs WEREN'T pretend, except when they are shown walking around in the modern world. But some of her answers were exactly what I expected, and secretly hoped for. Santa is real. Fairies are real. King Kong is definitely real.
The piece that fascinates me the most is how Schuyler incorporates her disability into her self-image. She's always identified with Ariel from The Little Mermaid, perhaps unsurprisingly; when asked why she loves this character so much, Schuyler touches her throat and then mimes the throwing away of her voice. But it's hard to know sometimes how much she wants to acknowledge her monster. She's reached a stage in her life when she doesn't want to use her speech device any more than she absolutely needs to, and when she does, she often insists on spelling out her words rather than using the icon sets.
But then she'll surprise us. The other day, while walking through a store, Schuyler saw a piece of pop art that she insisted she wanted for her room. When asked why, she mimed her wordlessness again. The art wasn't about being unable to speak. It wasn't an artistic treatise on mutism, not at all. But that was how Schuyler interpreted it, and now that it's hanging in her room, she goes back to look at it over and over. She seems very pleased with it, and with her own interpretation of its significance.
Schuyler is smart enough, and pragmatic enough, to understand that her disability is an integral part of who she is, and every now and then, she takes total ownership over it. But like everything else, she does it with style. Her own weird, wonderful style.
I gave an eye to save from night A babe born blind; And now with eager semi-sight Vast joy I find To think a child can share with me Earth ecstasy!
Delight of dawn with dewy gleam On damask rose; Crimson and gold as pennons stream Where sunset flows; And sight most nigh to paradise, Star-studded skies.
Ah! How in old of age I feel, E'er end my days, Could I star-splendoured sky reveal To childish gaze, Not one eye would I give, but two,-- Well, wouldn't you?
Schuyler has been writing poetry in school, accompanied by her own drawings. I'm not under any illusions here; aside from perhaps the one about the fox (which is also my favorite), these poems are clearly the product of a LOT of guidance and help from her teachers.
What keeps it from being "macaroni art", in my opinion, is the fact that the concepts and imagery should be very familiar to anyone who knows Schuyler. It's all hers.
(Just this once, I'm going to keep comments closed on this post. I wanted to share something special instead of just my insecurities, as a break from my self-indulgent writing of late. Either you'll enjoy it or you won't, but I don't need to know either way. I know how I feel about Schuyler's work. And that's enough for me.)
COUPLET
I heard of a fox I opened a box. I heard of a fox He's wearing my socks. I heard of a fox He jump and he knock. I heard of a fox He has the pocks.
HAIKU
Puppies Puppies can look sad. Puppies are like little dogs. I like to hold them.
Pasta Ravioli rocks. Ravioli is awesome. Cheese filled pasta squares.
"Queen of this whole world."
QUATRAINS
I went on the field trip. I ate a cookie and a chip. I wanted to give a big cheer. When I saw a pretty deer.
I ate a cookie that was chocoate chip. I found it on a pink spaceship. Through the air the ship went zip. I am going on a trip.
Schuyler had a day off for parent-teacher conferences today, so Julie and I took the day off as well. After a brief and painless meeting, we went to see Where the Wild Things Are.
And now I have a few thoughts on the film, which was not at all what I expected.
I can't say that Schuyler loved it, not with the wild abandon she has loved other monster movies or kids' movies. She was fascinated, and she wanted to discuss it after, which is always a good sign, but I get the sense that she's still trying to decide how she feels about it. I certainly wouldn't describe Where the Wild Things Are as a monster movie or a fantasy film, but as for whether or not I would call it a kids' movie, I'm not so sure.
It's not a children's movie in the sense that the Wild Things themselves are in any way fantastical or entertaining as mythical creatures. They are very human, in some vaguely neurotic but very familiar ways. But I think that Where the Wild Things Are is VERY much a kids' movie in that it perfectly hits some emotional truths about what childhood is really like, and especially how horribly and confusedly we treat the people we love the most. That these truths come from the mouths and the actions of weird Sendak monsters makes the perspective feel new, and yet totally familiar.
It's easy as adults to forget that childhood can be in large part a scary and frustrating experience, full of insecurity and fear, and that like Max in the film (and to a lesser degree the book), often the only course available to kids who find themselves feeling powerless and afraid is to act out. Not in cute, "rambunctious" ways, but with an intense, feral energy that leaves them even more conflicted and fearful after it's spent.
When Max lashes out, it's a little shocking, not because we've never seen it before, but because the emotions that drive him remind us of our own long-buried childhood experiences. His issues stem from his own complicated family relationships. He loves the people around him, but his young emotions are complicated by his worry for their sadnesses which he cannot fix, and his rage at the complexity of his own place in their lives, and in a world where things aren't fair and the sun will one day die. Max is confused by his own anger, as if the choices he makes are inexplicable to him. You don't have to be ten years old for that to feel real.
When the Wild Things misbehave or simply express their own neurotic impulses badly, it also feels weirdly familiar. If you don't know someone in your real, adult life who can be represented by just about every one of the Wild Things, then I suspect you don't know very many people. More to the point, if you don't recognize significant parts of your own personality in each of the characters, I don't know. Maybe you're just more well-adjusted than I am, but there's also the possibility that you might be living a somewhat unexamined life. If you are open to the experience, I think Where the Wild Things Are presents a rare opportunity to examine that inner self.
Is it the book? No, it's not. If you are wanting to see the book, Where the Wild Things Are is not your movie. (Although really, the good news for you is that the book didn't suddenly cease to exist the day the film opened.) Like the best adaptations, the film takes a starting point from the book and becomes something alive and relevant in its own right.
For little kids, the ones for whom the original book is age-appropriate, this film probably isn't a good choice. Not because it'll be too scary, I don't think (except for one or two sequences, if your kid is especially sensitive), but because it is probably a little more introspective than they are looking for. The Wild Things might be cool monsters, but they're still mostly just talking things out.
Kids who are a little older may take to Where the Wild Things Are, however, in ways that may surprise parents who might fear that it's too dark. If I'd seen this movie when I was ten, I think it would have resonated with me like crazy. It certainly did now.
Being a parent is hard enough without having to cope with a sudden, inexplicable illness striking your child, challenging you in ways that seem inhumane. Even with today's modern medical advancements, there are still little to no explanations for what causes autism or severe psychotic episodes. In this session, three fathers who've had to confront such confounding illnesses in their children discuss their long, often arduous journeys to understanding and dealing with such issues that seem to have no explanation behind them. Michael Greenberg's teenage daughter was struck mad on a New York City street, Robert Rummel-Hudson's beautiful infant daughter soon revealed that a monster within her had stolen her ability to speak, and Rupert Isaacson seeks the guidance of Mongolian shamans as he tries to keep his five-year-old autistic son from unraveling completley. Antonio Ruiz-Camacho, an experienced journalist who is currently writing a memoir about his upbringing as a part of a Mexican mixed-class family and his relationship with his father, will moderate the session.
Authors: Robert Rummel-Hudson Rupert Isaacson Michael Greenberg Moderated by: Antonio Ruiz-Camacho
Yesterday, former First Lady Laura Bush announced the author lineup for the 2009 Texas Book Festival, and lo and behold, I was on the list. I've actually known about this for a while, but was sworn to secrecy until yesterday's announcement. I wouldn't want to steal Mrs. Bush's thunder anyway. Her life can't be a picnic on the best of days.
(Because my narcissism is as vast as the sea, I actually spent yesterday evening looking for video of the announcement, just to see if she actually read my name off a list. I have Issues.)
Anyway, it's official now, and I'm happy as a clam (clams being notoriously jolly and well-adjusted mollusks). From the moment I found out that Schuyler's Monster was going to be published, I wanted to be a part of the Texas Book Festival. Back in my Austin days when I was employed at the big fancy Barnes & Noble Arboretum, I actually worked at one of the festivals, selling books. Coming back as an author feels like a real homecoming, and I'm thrilled that my book was selected this year.
(Congrats also to my friend, the very cool Gwen Zepeda, who will be presenting as both a children's author and novelist. Nobody likes a showoff.)
The schedule of events hasn't been released yet, and I'm not sure if this is supposed to be a secret, too. (I hope not, because here I go.) Apparently I am to appear on a panel with Rupert Isaacson, author of The Horse Boy: A Father's Quest to Heal His Son (about his efforts to reach his autistic son through equine therapy and Mongolian spiritualism) and Michael Greenberg, author of Hurry Down Sunshine: A Father's Story of Love and Madness (about his experience as a father with his teenage daughter's sudden manifestation of bipolar disorder). I've read Greenberg's book, which is really exceptional, and I'm working on the Isaacson now.
Both of their books have received a tremendous amount of critical acclaim and media attention, and I'm really honored and pleased to be able to join them as we talk about… whatever we talk about. As I said, the panel information is still being put together, but I'm going to go out on a limb and predict that we'll be discussing fatherhood and our relationships with the "different" child. Because otherwise, I might need to learn about horses in a hurry.
If you're in Austin at the end of October, I hope you'll attend. Schuyler will be there, and she's as jazzed as ever about her participation in all the book madness. Yesterday she was showing me a new book she'd gotten. She pointed to the cover of Judy Moody Gets Famous! and then pointed to herself.
New at Gregory's Bistro in Historic Downtown Plano Tuesday, June 16 - 7 pm 1022 E 15th Street, Plano, TX
Meet local authors Karen Harrington (Janeology) and Robert Rummel-Hudson (Schuyler's Monster) for an entertaining night of stories, writing advice and thoughts on a year in the life of a debut author.
Admission is free, but come early as seating is limited. Gregory’s Bistro is BYOB.
Karen Harrington is the author of the suspense novel Janeology, a unique blend of legal drama and psychological suspense that poses the question, how much of what a person does is due to nature and nurture?
Karen’s writing has received recognition from the Hemingway Short Story Festival, the Texas Film Institute, the Austin Film Festival and Writer’s Digest. Prior to publishing her novel, she was a corporate speechwriter for EDS and Greyhound Bus Lines.
Robert Rummel-Hudson is the author of the memoir Schuyler's Monster: A Father’s Journey with His Wordless Daughter. The book tells the story of raising a little girl with a disability and learning to become the father she needs.
Robert has been writing online since 1995. During that time, his work has been recognized by the Diarist Awards. His story has been featured in articles in the Austin Chronicle, the New Haven Register, the Dallas Morning News and the Fort Worth Star-Telegram. He has been featured on American Public Radio’s Weekend America, WFAA’s Good Morning Texas and KERA’s Think with Krys Boyd.
I have no idea who put this together, but I'm glad they did. When I think of Memorial Day, I don't think of flags and pretty flowers, or speeches and justifications. I think of this piece of music. This is the "Libera me", the final movement of Benjamin Britten's War Requiem.
Libera me, Domine, de morte aeterna, in die illa tremenda: Quando coeli movendi sunt et terra: Dum veneris judicare saeculum per ignem
Tremens factus sum ego, et timeo dum discussio venerit, atque ventura ira. Libera me, Domine, de morte aeterna. Quando coeli movendi sunt i terra. Dies illa, dies irae, calamitatis et miseriae, dies magna et amara valde. Libera me, Domine.
(Deliver me, O Lord, from eternal death in that awful day when the heavens and earth shall be shaken when Thou shalt come to judge the world by fire.
I am seized with fear and trembling, until the trial shall be at hand and the wrath to come. Deliver me, O Lord, from eternal death. When the heavens and earth shall be shaken. That day, that day of wrath, of calamity and misery, a great day and exceeding bitter. Deliver me, O Lord.)
-----
It seemed that out of battle I escaped Down some profound dull tunnel, long since scooped Through granites which titanic wars had groined. Yet also there encumbered sleepers groaned, Too fast in thought or death to be bestirred. Then, as I probed them, one sprang up, and stared With piteous recognition in fixed eyes, Lifting distressful hands as if to bless. And no guns thumped, or down the flues made moan. "Strange friend," I said, "here is no cause to mourn."
"None", said the other, "save the undone years, The hopelessness. Whatever hope is yours, Was my life also; I went hunting wild After the wildest beauty in the world, For by my glee might many men have laughed, And of my weeping something had been left, Which must die now. I mean the truth untold, The pity of war, the pity war distilled. Now men will go content with what we spoiled. Or, discontent, boil bloody, and be spilled. They will be swift with swiftness of the tigress, None will break ranks, though nations trek from progress. Miss we the march of this retreating world Into vain citadels that are not walled. Then, when much blood had clogged their chariot-wheels I would go up and wash them from sweet wells, Even from wells we sunk too deep for war, Even the sweetest wells that ever were. I am the enemy you killed, my friend. I knew you in this dark; for so you frowned Yesterday through me as you jabbed and killed. I parried; but my hands were loath and cold.
Let us sleep now...
("Strange Meeting" - Wilfred Owen, 1893-1918)
-----
In paridisum deducant te Angeli; in tuo adventu suscipiant te Martyres, et perducant te in civitatem sanctam Jerusalem. Chorus Angelorum te suscipiat, et cum Lazaro quondam paupere aeternam habeas requiem.
Requiem aeternam dona eis, Domine: et lux perpetua luceat eis.
Requiescant in pace. Amen.
(Into Paradise may the Angels lead thee: at thy coming may the Martyrs receive thee, and bring thee into the holy city Jerusalem. May the Choir of Angels receive thee and with Lazarus, once poor, may thou have eternal rest.
Lord, grant them eternal rest, and let the perpetual light shine upon them.
In the interest of full disclosure, Gwen is a friend of mine. But that wasn't always the case, and by the time we become friends, I already knew she was a good writer.
I'm not much of a critic, certainly. I've written a few reviews for Amazon, but there are two things I won't do where reviews are concerned. I won't write a bad review at all, first of all. I've experienced the fun of reading a review and hoping it won't rip apart my book, and I'd never dream of contributing to another author's anxiety. But I also won't write a good review for a book I don't like.
I've been sitting on this book for a while because I'm a crappy friend when it comes to following through on things like this. Well, what are you going to do?
Gwen Zepeda's novel Houston, We Have a Problema is bound to be pushed into some pretty narrow genre categories -- latina chick lit, perhaps -- which is a pity, because Zepeda has written an engaging and fun work that transcends its regional and cultural environment and is quite simply a well-written and entertaining piece of work.
Jessica Luna is a single twentysomething standing on the edge of change. She finds herself confronting the prospects of changing jobs while at the same time hurtling towards decisions that must be made in her dating life, romantic choices that seem to mirror her career in flux. She jockeys for promotion at an insurance company job that she finds unfulfilling even as she dreams of a career in the art world. At the same time, she teeters between Jonathan, the successful Anglo executive who represents safety but also a step away from her passion and her culture, and the temperamental artist Guillermo, who frustrates her with his unreliability even as he haunts her on a visceral, emotional level. Jessica's superstitious nature leads her to consult Madame Hortensia, a pragmatic fortune teller whose guidance mostly serves to turn her gaze inward. Jessica Luna will find her own answers, if only she can learn to trust her heart.
Houston, We Have a Problema reads like good solid chick lit, but Zepeda delves into topics of race and family dysfunction that give the novel an unexpected depth. It does so, however, with subtlety and humor, and most of all with nuanced, believable characters. This isn't a book I would have naturally gravitated to, mostly because of the genre, but to have missed out on this charming story would have been a real pity. I've been aware of Gwen Zepeda's writing for a while, but with Houston, We Have a Problema, she now has my undivided attention.
Gwen Zepeda's novel Houston, We Have a Problema is bound to be pushed into some pretty narrow genre categories -- latina chick lit, perhaps -- which is a pity, because Zepeda has written an engaging and fun work that transcends its regional and cultural environment and is quite simply a well-written and entertaining piece of work.