February 25, 2009

"a point upon a map of fog..."

Note to my delicate and sensitive readers: 
So there's a part of my San Francisco Adventure Story that involves injury, blood, general nastiness, pain and even partial accidental amputation. I'll save that part for the end, so that those of you prone to the vapors can stop reading. (And also so my extra-nasty readers can skip ahead. You know who you are.)

My trip to the San Francisco Bay Area was, I believe, an outstanding success. I managed to schedule a surprising amount of productive-type behavior into five days, and I got to see a lot of what is an absolutely beautiful city, even when it's shrouded in rain. Which it was, by the way, beginning the day I arrived and lifting, I suspect, at roughly the same hour that my return flight took off.

The night before I left Texas, the Dallas area was rocked by tornados (tornadi?), so I don't know, maybe it's me.

I'd be the worst sort of jackass guest if I didn't stop right now and express my gratitude to Ian Golder and Monique van den Berg for putting me up (and putting up with me) for the duration of my stay. Five days is a long time to have a house guest, but they never complained and not even once gently suggested that perhaps I'd be more comfortable if I got a room at a hotel or one of the city's many fine homeless shelters. More importantly, their giant dog never tried to eat me, which I also consider the sign of a polite host.

(Actually, the truth is that I have something of a Bigdogaphobia, thanks to a horrible childhood attack by, ironically, the one breed of big dog that doesn't seem to bother me now, a Great Dane. I used to have scars on the back of my legs that told the tale, but I am far too old and fat to be able to look back there now. My thanks to Ian and Monique, and Goulash the Giant But Gentle Dogzilla, for being sensitive to my weird dog issues.)

The first night I was in town, I spoke to Monique's writing class at the College of San Mateo. If you're wondering what possible situation I might consider to be absolutely surreal, it might be speaking to a class that is studying personal narrative by way of my own book. Yes, my book was the assigned text; the students were reading it and taking tests about it and having classroom discussions about it. I could try to spin that experience into some fancy, existential parable, but in all honesty, it was just extremely damn cool to be me that evening. I highly recommend it.

I agreed to help workshop some of the personal narratives written by the students, and to be honest, I was nervous about it. I had no idea what I was going to say if I had to workshop an essay that was, well, bad. But here's the thing: none of them were. Everything I read had a real sense of voice; everything had something to say and a concept of how they wanted to express it. I was legitimately impressed, and only resented their youth a little. Damn kids.

The next day, we visited schools. You knew that already.

*          *          *

(photo by Monique van den Berg)

I'd never been to San Francisco before, but there are a number of people in the area whom I knew but had never met, in that nerdy internet way that was weird a decade ago but is just now The Way Things Are in the World. My signing at Book Passage in Corte Madera gave me the opportunity to meet some of them in the flesh, as well as see some people I'd met previously and at least one friend from high school. I know I'm going to screw this up and forget someone, but I'd like to thank Shannon, Ian & Monique, Annie, Kate, Alison, Halsted, Kara, Char, and the AMAZING Edith Meyer, who once again showed up with food, this time cookies, shortbread and a lemon loaf that I think I would have knocked down an old person to get to.

Most of all, however, there were two other special guests. Courtesy of Skype and a good sound system set up by Dana, the awesome events person from Book Passage, Julie and Schuyler appeared on my laptop and answered questions and generally charmed the pants off of everyone. So if you weren't there, well, you missed a lot of charmed, pantsless people. Your loss.

(photo by Shannon Kokoska)

*          *          *

The rest of my visit was vacation, really. We went to the Big Basin Redwoods State Park and saw many a mighty tree, and while I took lots of photos, it's impossible to get a sense of just how gigantic some of them really were. In person, it was "Holy shit, that's a big goddamn redwood!" When you look at the photos, it's more like "Oh, look. A pretty tree."

(photo by Monique van den Berg)

My last day in San Francisco was spent sightseeing in the city with Monique and attending a concert by the San Francisco Symphony, which was Monique's amazing Christmas present to me. The performance was conducted by Charles Dutoit, one of my favorite conductors who, with the Montreal Symphony, produced some of the best and most enduring recordings of the last thirty years. San Francisco Symphony performed Debussy's "Oh, look. A pretty deer.", Stravinsky's Symphony in C, and closed with Rimsky-Korsakov's Scheherazade, which is frankly a much better piece that R-K really had any right to compose, based on the rest of his output. Don't get me wrong, Rimsky-Korsakov was a brilliant orchestrator and wrote some fine music, by golly, but in Scheherazade, he really stepped it up. He did us hyphenates proud.

And of course, we visited the Pirate Supply Store at 826 Valencia, which (for zoning purposes) serves as a legitimate business front for the writing center founded by Dave Eggers. I bought pirate flags and a t-shirt and the obligatory eye patch for Schuyler and Julie.

"Pillage before plunder, what a blunder.
Plunder before pillage, mission fulfillage."

I had a great time in San Francisco, and I'd love to return soon. There's a possibility that Schuyler might attend a summer camp for kids who use Big Boxes of Words, although I might have to discover buried treasure or lost mob money to make that a reality.

I hope it happens.

Okay, I mean it now. Tender-hearts stop reading now. I'm serious. If you don't like the rest of this, don't leave me any crybaby comments. You've been warned.

So yeah, I cut off the end of my finger.

The morning I left for California, I was packing my toiletries and had already put my razor in a side pocket of my little bathroom bag. I decided that it would be a good idea to store my toothbrush in the same pocket (NOTE: This was not actually a good idea), and as I pushed my toothbrush in, it stuck on something, my hand slipped, and my middle finger (aka "The Bird") on my right hand made a rather abrupt and rude introduction to the little Precision Trimmer blade on the top edge of my razor, which if you're into detail, is that funky five-blade "Fusion Power" thing from Gillette.

(Because, you know, it has five blades. How could I use something that just had four, or even three blades -- pshaw! -- all the while KNOWING that there were five blades out there, PLUS that one nasty little trimmer blade on top? Get fucking serious.)

I just went to the Gillette site to see what that little top blade is called, and ran across the following line in the ad: "So comfortable, you barely feel the blades."

I felt the blade.

Now, before you begin to wonder (as you inevitably will) if I immediately went to the emergency room, well, here's the thing. My plane was leaving in about an hour and a half. You just read about the wonderful time I had in San Francisco, and also how many professional commitments I had there. I couldn't just NOT go, all because I cut myself with my razor, and not even shaving but PACKING.

Also, in my own defense (and Julie can queasily back me up on this), it bled. A lot. So much so that I couldn't actually see what I had done. It hurt more than I thought a cut should hurt, and it would not stop bleeding for anything, no matter how much pressure I put on it. But still, I just thought it was a deep cut, right? And when we bandaged it up tightly, the pressure made the bleeding stop. I figured, it just needs some time to settle down. So we threw my bags in the car and drove to the airport, my finger hurting wildly but no longer squirting blood like a Monty Python sketch.

It wasn't until I got past security that I noticed that the bleeding had begun again, seeping through the bandages like, well, like a poorly bandaged wound that really should have been seen by a doctor. If before was a bad time to go have it looked at, then sitting outside my gate with my shoes off wasn't much better. I found a bathroom, decided against removing the bandages (which I still think was probably a smart move on my part, and one that my fellow travelers and bathroom-users would probably agree with) and simply applied MORE bandages on top on the poor little Dutchboy-like original strips that were bravely losing the fight against the flood.

Surprisingly, this second bit of first aid (would that make it second aid?) held, and I made my flight without incident. It wasn't until I attempted to change the bandages before class that I realized how bad it was.

Because it bled again. Badly. And now I saw why.

Okay, so first of all, sit down. Then imagine the very tip of your finger, or my finger really, if that makes you feel better about it. Imagine a piece about the size of a dime (which constitutes most of the tip of your finger, really) and about the thickness of two quarters. Now imagine it connected by a tiny piece of skin. Now imagine it NO LONGER connected by that tiny piece of skin. Imagine it instead stuck to the inside of a bloody bandage, a small not-bloody circle in the middle of a brownish-red tragedy.

And if you're REALLY into detail, also imagine taking your killer razor out of your bag to inexplicably use it against your own stubbly face, despite the fact that it has tasted human blood and may just want more more more. Upon examination, you find that it is surprisingly not at all bloody, because when you cut yourself, your "Ow ow, holy shit, ow motherfucker OW!" reflex kicked in quickly enough to get you to the sink before any real bleeding began. What you do find is what appears to be a small piece of clear plastic stuck in the blades. But when you fish it out, you remember that most clear plastic doesn't have little fingerprint ridges in it. Then you sit down again. And maybe not eat for the rest of the day.

Apparently I cut it twice. One was the big cut, and one was a little bit shaved off the tip, waiting for me to discover it later.

So yeah. I cut off the end of my finger.

Now, I didn't cut off a major, life-changing chunk of my finger. I'll have a flat spot, that's certain, but I can still count to ten and Schuyler can still paint all my fingernails. Still, the cut went deep into that part of the skin where the nerves live, and they do not like being exposed like that. Two weeks after the cut, it is healing up nicely (amazingly, no infection, which goes to show that God really does protect children and stupid people), but you know what?

It still hurts. A lot.

It looks sort of cool, though. I'll leave that to your imagination.

February 20, 2009

Monster Slayers by the Bay

When you're a special needs parent, a Shepherd of the Broken, and you finally find a school that seems to get your kid and is truly working for a greater good, it's so easy to feel like you're living a world apart. It seems fragile, as if the bubble in which you exist is the only one of its kind in the world, and that if it should pop, everything would be entirely and devastatingly lost.

And then you find other bubbles, other pockets where people are building their own similar worlds, and suddenly it feels like everything might just be okay, and that the world might just be getting incrementally better, despite all appearances to the contrary. The broken are being helped to their feet and into the world all over, it turns out, and while the lost still vastly outweigh the found, it's a start. It won't do forever, or even for long, but it'll do for now.

Last week, my friend Monique van den Berg and I were fortunate enough, thanks to the efforts of the Prentke Romich Company and particularly due to the work of PRC's Kara Bidstrup, to visit two programs in the San Francisco Bay Area that are not only doing the same kind of work as Schuyler's AAC program here in Plano, Texas, but have served as models for this program and many others. We met other teachers, ones who have been doing this work with kids, REAL kids in REAL schools, and pretty much for as long as the technology has been in development to do so.

Most of all, I met the kids.

The Bridge School in Hillsborough, California was founded in 1986. The idea was to create a learning environment where kids with complex communication needs could develop and thrive all the way to adulthood, largely through the application of augmentative and alternative communication. The school uses a multi-modal approach, similar to how Schuyler communicates through a combinations of her device, her sign language and her limited verbal skills.

Since the very beginning , the school has been funded at least in part thanks to the annual Bridge School Benefit Concert, thrown every fall by Neil Young and his friends. The lineup over the years has been pretty impressive, including (and I'm not even kidding here) Bruce Springsteen, Billy Idol, Bob Dylan, Jerry Garcia & Bob Weir, Tom Petty & The Heartbreakers, Tracy Chapman, Elvis Costello, Willie Nelson, Elton John, James Taylor, Simon & Garfunkel, Beck, Emmylou Harris, The Pretenders, David Bowie, The Smashing Pumpkins, Alanis Morissette, Dave Matthews Band, R.E.M., Sarah McLachlan, Barenaked Ladies, Eels, Sheryl Crow, Green Day, Lucinda Williams, Robin Williams, Red Hot Chili Peppers, Foo Fighters, Thom Yorke, LeAnn Rimes, Jack Johnson, Wilco, Counting Crows, Paul McCartney, Tony Bennett, John Mellencamp, Los Lobos, Norah Jones, Jerry Lee Lewis, Bright Eyes, Good Charlotte, Trent Reznor, Death Cab for Cutie, Gillian Welch, Devendra Banhart, Tom Waits with Kronos Quartet, John Mayer, Regina Spektor, Cat Power...

So yeah. The concert is a big deal. The bigger deal is what you find inside the school.

We met with the Bridge School's executive director, Dr. Vicki Casella, who was kind enough to take some time to explain the program, and then we were given a tour by Kristen Gray, the school's Outreach Program Manager. The Bridge School keeps a small student population, only fourteen kids at a time, but the program is a transitional one, with the goal of getting these kids back out into their community schools. The school supports about fifty kids outside of its small campus, and the logistics and resources and above all training required to do so must be daunting.

When I met the kids, I was suddenly aware of just how challenging a task this is for the Bridge School. Of the fourteen kids in the program, none were ambulatory and most presented physical challenges that could best be described as extreme. These are the cases that the Bridge School serves exclusively now. And yet every single one of them is learning to communicate, through a variety of creative techniques and strategies, all with the goal of graduating these kids from Bridge and transitioning them to their home school districts or other educational placements.

More similar to Schuyler's AAC classroom was our next destination. The TACLE program at Oakland's Redwood Heights Elementary is a program that was originally established in 1990 by the Bridge School, along with Oakland's Programs for Exceptional Children, California Children Services and Associates of Augmentative Communication and Technology Services. If the Bridge School is an island of specialized learning, then the TACLE program is an outpost, a fortress deep within neurotypical territory. Like Schuyler's class, these kids are integrated into the elementary school where they are housed. The teachers in the class, Stephanie Taymuree and Michele Caputo, were simply extraordinary. I'm not sure how to describe it except that the just GOT these kids. They understood exactly what the kids needed, they knew when to be calm and when to be excited, when to be "appropriate" and when to recognize the importance of a communication moment above all else. I found myself asking them questions about my own parenting approaches, questions I'd been carrying around for me for years without even realizing it.

Their skill and their commitment showed. It was clear in the enthusiasm of their students, many of whom lined up with their PRC Vantage speech devices to tell us the things that were fluttering in their heads like bats searching for a portal, looking to set those thoughts free. They used their devices to speak, sometimes in sentences and sometimes simply in excited, frantic strings of associated words, and despite the fact that many of them never even take their AAC devices home (due to occasionally difficult family lives at home), these kids were incredibly fired up about communicating electronically, to a degree that I'm embarrassed to say that I've not seen in Schuyler, perhaps ever.

By the end of the day, it had become clear to me that the teachers and therapists at Bridge and at the TACLE program are achieving their goals with persistence and patience and an overwhelming positivity. As I was introduced to these students, what I noticed most of all was the thing I always look for when I meet kids with disabilities. Regardless of their often extreme impairment or their difficult home situations, these kids are bright-eyed and forward leaning, excited about their surroundings and eager to break through or go around the walls that they've so often in the past found looming in their way.

If you've had any experience with good special education programs, you probably understand what I mean, just as any past exposure to a BAD program will have familiarized you with the dull-eyed, lethargic kids that populate those programs where teachers and therapists have, on some fundamental level, given up on their students and lost their faith. It's a kind of difference in a child's eyes and in their expressions; you see it in kids who are powerfully motivated and inspired rather than placated and underestimated and ultimately abandoned by their schools.

It's hard to describe, but I saw it in the eyes of the very first girl I met at Bridge. I guess the best way I can put it is that when I looked into her face and into those flashing eyes, behind the impairment and the physical manifestations of her own particular monster, I could see, with a sad and yet wonderful clarity, the little girl she was meant to be. You look into their eyes and you see them as they should have been, and as who they can be still in their own way. It's sad and it's wonderful, and I think perhaps most of all it's the thing that keeps these remarkable teachers and therapists coming back to work every day.

I understand how lucky we are. I know how fortunate Schuyler is, to be ambulatory and relatively unmarked by her monster in any significant physical way. She's nine years old now, and she's been in an excellent program for three and a half years. Schuyler finds a way to communicate now, and she may be delayed developmentally but it no longer feels like she's doomed to remain that way forever. Schuyler grows more "normal", for lack of a better word, every day, and one day she just might reach the point where she can walk, and more importantly TALK, in the neurotypical world like just about any other young woman you might meet. In some ways, she already does.

But after spending time with these kids and watching how hard they work with AAC technology to reach the world around them and communicate the things going on inside their beautiful and remarkable brains, I am reminded once again of a simple truth, one that I sometimes forget, to my shame.

Without the support of so many people and without the hard work of everyone who loves her and refuses to give up or accept things that no parent should ever accept, and most of all without her Big Box of Words and her little mental toolbox of sign language and her broken but earnest verbal expression, Schuyler Noelle would still be that ethereal, otherworldly little girl, the one I described in my book. So strange and beautiful, but not entirely ours or entirely in our world.

Stop looking at my hair like that. Just stop.

My friend and fellow fancy pants author Karen Harrington and I presented a panel for the Writers' Guild of Texas earlier this week, called "A Year in the Life of Two Debut Authors", and Karen has done a good write-up on her blog of some of the topics we touched on, in an entry called "8 Tips for The Debut Author".

Clearly, Tip #9 should be "Have someone look at your hair before you go out in public". Well, what are you going to do? Karen is always so pretty and put together and organized, and I am just a big mess all the time. She's nowhere near as compelling of a cautionary tale as I am, though. So, you know, I've got that going for me.

I am working on a few entries about my trip to San Francisco. They should be posted at some point between today and the cooling of the sun and the subsequent end of civilization as we know it.

February 17, 2009

Letter to PRC

things that are green
Originally uploaded by mo pie
I'm writing more about my visit to the Bay Area (much more, in fact), but I wanted to share a letter I just sent to the president and to the marketing director of the Prentke Romich Company, known to monster fighters all as the makers of Schuyler's Big Box of Words.

Sometimes I feel like so much focus falls on people when they don't measure up to expectations, and yet there are so many people out there getting it right. I don't ever want to forget to say thanks when they do.

Hello again!

I just wanted to take a moment and let you know that I had a very successful visit to the San Francisco area this past week, visiting the
Bridge School and the TACLE Program at Redwood Heights Elementary School in Oakland. It was amazing to see how these programs work, and to meet the dedicated people who are fighting the good fight. It's one thing to talk about how augmentative communication technology SHOULD be implemented in a school environment, but quite another to see how people are making it a reality. It has given me a lot to think about, and to write about as well.

I would be remiss if I didn't let you know just how extraordinary
Kara Bidstrup was in making my trip such a memorable experience. From the very beginning, she was enthusiastic and very efficient in setting up these visits and getting me where I needed to be without any trouble at all. She was very warm and friendly, and was a real pleasure to be around. It was clear that the people we met at both schools held Kara in high regard, and I can't imagine that she could have represented PRC with any higher degree of professionalism and enthusiasm.

Beyond her role in facilitating my school visits, Kara was a real joy to talk to one-on-one. I was especially thrilled when she came to my book signing the next night at Book Passage in Corte Madera. Schuyler and Julie were unable to come on this trip with me, but they appeared at the event via teleconferencing. When Schuyler used her Vantage on the screen and audience members began asking questions, Kara stepped up and was able to show a Vantage Lite and demonstrate how it functioned. I received a number of very appreciative comments from people who had been curious about the device when they read about it in the book and loved being able to see one in person, as well as having a knowledgeable person on-hand to answer questions about it. It made me realize that I should have invited a PRC rep to be on-hand at my solo events all along.

The longer I work with your company, both in my capacity as a writer and advocate and more importantly as Schuyler's father, the more impressed I am with the level of competence and enthusiasm of everyone who works for you. It speaks volumes about PRC that I was thrilled at how amazing Kara was, but not one bit surprised. Thank you once again for everything you've done, both for me and my family and for all the other people out there who seek so desperately for a voice and find one, thanks to you.

My continued best wishes,

Rob R-H

February 13, 2009

I am your San Francisco treat, baby

If you're in the Bay Area, this is your reminder to come see me tonight at 7:00, at Book Passage in Corte Madera. I think it's going to be a lot of fun. There may be some special surprises of the snack variety and just maybe, if I can figure out how to make it work, a special guest appearance of sorts. Oo, a teaser.

I'm having an amazing time in San Francisco. I spoke to an advanced composition class at the College of San Mateo, and afterwards we workshopped some of their own personal narrative pieces, all of which were really very good. I hereby repudiate all my cracks about "kids these days". I also visited the Bridge School and a program very similar to Schuyler's in Oakland, and it was an experience that I am still processing and will write about at length soon. Today I'm going to explore the city with Monique, and I'd be a terrible father to Schuyler if my day didn't include a visit to the Pirate Supply Store.

Oh, and I accidentally cut off the tip of my finger. I suppose I'll write about that soon, too.

February 8, 2009

Muted anxiety

Recently, I've been reading a great deal of literature and material on the subject of special needs parenting (including an absolutely amazing manuscript I may be blurbing that I can't WAIT to tell you about in the coming months as it gets closer to publication), and the thing that strikes me once again is the incredible diversity of the experiences we have.

In the past, I've addressed how those of us writing about our experiences as "Shepherds of the Broken" do so with a variety of perspectives and approaches to what our kids face. Some of us are pragmatists, some infuse our writing with spirituality or religion, some of us use humor, some report from a place of despair, and others write with cheerful optimism. One of the reasons I have largely rejected the idea of People First Language is that it only really works as intended when it's applied as a universal standard, which assumes that there is a common attitude and approach to special needs parenting. In my experience, nothing could be further from the truth.

Lately I've been especially aware of how the experiences we face as special needs parents are so wildly divergent as to seriously challenge the notion that we really even have a comparable perspective at all. We do, of course; the challenges we face in receiving services, the grief over the loss of the imaginary child bourn from our expectations who is not to be, the fight that we take on because if not us, then who? -- these really do seem to be universal experiences. But our kids all have individual monsters, with wildly different effects on their hosts. The variety of disabilities can be daunting when take a step back and take it all in. God, the Universe, Fate, whatever you believe in -- someone or something seems to have a limitless (and limitlessly cruel) imagination when it comes to ways to break children.

Among children with disabilities, Schuyler is luckier than most, we are aware of this. When people meet Schuyler, they tend to take her at face value; her monster is hidden, for the most part, and doesn't obviously stamp itself on her outward appearance. Her facial structure is "normal" (whatever that means), her social behavior is largely consistent with that of a neurotypical kid her age, and she is completely ambulatory, albeit somewhat clumsy. Truthfully, however, Schuyler tends to skew a little younger when she finds random play friends; her delay and her lack of language still makes her a more ideal playmate for kids who are a few years younger than she is. There are concepts that she simply doesn't get, concepts that a nine year-old should understand. It's nice to pretend that she's on track with other kids her age just because she's attending age-appropriate mainstream classes part of the day, but the truth is more complicated than that, and it's going to become more and more of an issue as she gets older. Will she ever catch up to her peers? Nobody knows, but she's not there yet, not by a long shot.

Still, it's easy to put her monster out of mind. This might be a strange confession from someone whose very identity as a writer and public speaker is largely defined by special needs parenting, but I don't think of Schuyler as a child with a disability, not most of the time. It's not that I forget, exactly. Rather, the accommodations and adjustments that we make as her parents when we communicate or interact with her on a daily basis have become ingrained in our natural behaviors. It's simply how it is with Schuyler.

When your child says something to you, do you automatically repeat it back to her to make sure she said what you think you heard? Do you keep an expensive electronic device within arm's reach at all times for the times that sign language and Martian fail to communicate a concept? We do, and the odd thing is, we do so without thinking about it most of the time. We've accepted the weird as our new normal, and honestly, your normal strikes us a a little weird. Normal conversation with a child? What kind of futuristic, science fiction concept is that? Do you have a talking cat, too? That's just crazy talk, man.

There are times when it all breaks down, though. Schuyler is a willful child, and while her school is, in most respects, the very best place in the world for her, she's still a square peg sometimes. This has very little to do with her monster and almost everything to do with her father, I know. Schuyler has a natural distrust for authority and a taste for random acts of meaningless defiance, personality traits that are nothing like Julie and everything like me. Notes come home from school reporting various acts of mild insurrection about once a week or so. "Schuyler refused to use a pencil today" was the most recent, and when asked why, she simply stated that she wanted to use a pen, as if the issue was obvious. She clearly understands the idea of her teachers as authority figures. I just don't believe she accepts it, not entirely.

I recognize this as a strength as well as a liability; it's a trait that is going to serve her well when she's older. But it presents a challenge and requires a delicate balance. The issue becomes more complicated when she disobeys Julie and me, of course. Schuyler defies us, because she's nine and because she's Schuyler, and we push back, because we'd like to avoid raising a feral anarchist if we can.

But when she gets in trouble, Schuyler shuts down. She freezes up when we insist that she use her device to explain herself; it's suddenly as if she has never used it before in her life. I mean it, too; she actually used it more proficiently back when she really had never used it before in her life. The problem goes beyond stubbornness, too. She seems to legitimately be unable to calm herself to the point that she can construct a dialogue. Instead, she tries to defend herself verbally, but the more upset she gets, she more unintelligible she becomes. Her words, already identifiable mostly through context and inflection alone, run together into an fretful, angry stream of sound. Her meaning disappears, replaced by an incomprehensible anxiety.

These are the worst moments for us, and while they don't compare to the worst moments some families face, they nevertheless involve a near-complete shutdown of communication. In those moments, our frustration and being unable to simply parent our child is exceeded only by Schuyler's frustration at suddenly finding herself under a baffling glass dome, shouting into a void. In those moments, we all feel broken.

I don't know what the answer is. It saps our strength, all of us, because it shines a hard light on one of the lingering deficiencies of Schuyler's use of the Big Box of Words. It illustrates just how far we all have to go, and how hard we have to work, in order to make this unnatural form of communication feel like second nature to her.

Most of the time, Schuyler doesn't seem broken, not to those of us who love her and live every minute in her world. Even now, though, after all these years and as far as we've come with her, it is painful and shocking when the monster bites.

February 4, 2009

Minnesota Parent review

"Fully formed: a father's journey with his nonverbal daughter"
by Beth Hawkins

Minnesota Parent: "Shelf Life", February 2009

"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."

February 1, 2009

In which the author clarifies an important item.

From the comments to my last post:

(After a six paragraph rant about the eeeevils of Socialism)

If Rob was a true socialist as he says he is, he does say he has a socialist heart. So I feel safe in making that assumption.

So Rob, will you keep the profits that you have earned in an honorable fashion from the sale of the book or hand them over to the state? Do you really have a socialist heart or are you just playing make-believe?

That's a fabulous question, thanks for asking! Here's the scoop!

No, I am not a Socialist, or a Marxist, or a Communist. (Is anyone anymore, really?  Outside of places like South America or Albania?)  What is perhaps confusing you in this instance is my use of Humor. In the past, I've been called a Socialist by conservative readers for a number of progressive positions I've taken. The most notable instance occurred when I argued in an admittedly ill-considered guest post on PajamasMedia that kids with special needs deserve an equal education and at least the option of a mainstream education in the public schools for which we all pay with our taxes.

The accusation was so funny to me that I began to sarcastically refer to myself as a Socialist, the humor (at least to me) originating in the idea that I was somehow a bad American, a Socialist and (best of all) an elitist because my political and social beliefs differed from theirs.

It was, in other words, a Joke.

The term "joke" is defined by Wikipedia as "a short story or ironic depiction of a situation communicated with the intent of being humorous". The definition goes on to set out the antiquity, anthropology and psychology of these jokes and even outlining the rules that govern them and the different types of jokes that can typically be found.

Whew! That's complicated!

I realize now how confusing my use of these so-called Jokes can be, so I've decided to explain a few more of them, ones that I know I've used in the past.


  • Although she communicates using an electronic device and a synthetic voice, Schuyler is not actually a cyborg. She is not half human, half robot. In fact, the percentage of Schuyler's body that consists of any robotics whatsoever is exactly zero.
  • Furthermore, Schuyler does not actually speak Martian.
  • In fact, to the best of my knowledge or that of the scientific community at large, there is no such language as Martian. (Note: This could be disproven at a later date.)
  • I did actually purchase new pants shortly before my book was published, after I forgot to pack mine when I took Schuyler to New York City to meet with my publisher. The pants I purchased, however, were in no way actually Fancy Pants, aside from coming from the Gap in Times Square and being priced accordingly. In reality, I do not own a pair of so-called "Fancy Pants", and I do not believe that I am actually a Fancy Pants Author, not even by virtue of metaphorical Fancy Pants, or some sort of "Fancy Pants of the Mind".
  • I do not own a Cloak of Invisibility, nor do I believe people who ignore me in public places such as the mall or the Department of Motor Vehicles do so because I am actually invisible. I will not, therefore, don this Cloak of Invisibility in order to fight crime.
  • When a car or truck on the highway in front of me drifts across the lanes with abandon, I do not in fact believe that the driver of said vehicle is the Flying Dutchman, doomed to wander the roads for all eternity.
  • I do not actually believe that my car, Atomo, is "the Air-conditioned Hellcar of the Apocalypse", and I have no plans to drive it across a barren wasteland, Mad Max-style, following the inevitable collapse of our civilization.
  • I also do not believe that my previous car, a VW Beetle known as "Beelzebug", was really the Devil or was in any way affiliated with Satan or any supernatural being associated with darkness or evil. (Note: The Volkswagen Corporation doesn't count, as they are not, by definition, a supernatural entity.)
  • I do not actually believe that Christianity is a zombie cult, or that Jesus is an Imaginary Friend.  (Note:  Actually, I kind of do.  I'm sorry.)
  • Although I claim to quote from its pages from time to time, I do not believe there is actually a publication called The Journal of No Shit.
  • In reality, I do not believe that the term "differently abled" refers to children with superhero talents such as the ability to fly.
  • Although I publicly claimed otherwise, I would not have actually voted for John McCain in the last presidential election if he had used the words "dagnabbit", "new-fangled" or "old-timey" in any of the debates.
  • I did not really believe that the tornado sirens in Collin County, Texas would go off as soon as the voting machine registered my vote for Barack Obama.
  • I do not believe that every conservative Republican is a humorless pinhead, and will continue to make that determination on a case-by-case basis.

I hope this clears up any confusion, and thanks for writing!

January 30, 2009

Promotion, sans apologies

Originally uploaded by Citizen Rob
I just wanted to post a reminder for those of you in the Bay Area, I will be appearing at Book Passage in Corte Madera, California on February 13th at 7pm. Come see Jimmy Carter the night before, and then just camp overnight. I'm sure they won't mind.

It's going to be a great trip, mostly because I am going to get to see a lot of old friends and meet some people I've known online for years. I'm also visiting some schools, such as the famous Bridge School, that have similar programs to the one Schuyler attends here in Texas. And I plan to be a shameless, generic San Francisco tourist, all Golden Gate Bridge and cable cars and giant trees and Rice-a-Roni. Sorry if I embarrass anyone.

The following Monday night at 7pm, I will be speaking at the regular meeting of the Writers' Guild of Texas, along with my friend Karen Harrington, author of Janeology. The topic will be "A Year in the Life of Two Debut Authors", and it should be a lot of fun. The meeting takes place in the basement conference room of the Richardson Public Library in Richardson, Texas.

I was going to apologize for bothering everyone with book promotional stuff yet again, but you know what? I'm not going to do that.

I recently read an excellent post on author Gwen Zepeda's blog that really made me think. (You should read Gwen's wonderful new novel, Houston, We Have a Problema, by the way. I am digging it muchly.) Hers is a common experience for authors. We find ourselves almost in an apologetic position for actually getting our work into print, and especially for being expected by our publishers to market ourselves in the process.

Gwen writes about being confronted by the stranger who has an axe to grind about publishing, but it happens with the people in your life, too. For a while you just tell yourself that it's probably hard for them to watch someone they know "suddenly" find success. You cut them slack because you think they'll come to terms with it eventually. The person who you are hasn't changed, after all, and neither have the reasons you wrote your book in the first place, reasons that have very little to do with being a Fancy Pants Author. You got published, not because the system is broken and only rewards hacks, but because you worked your ass off and created something you believe in. Still, you don't make an issue out of it because you don't want to look like a dick.

To be honest, I'm tired of feeling like I need to apologize for it. I don't think I'm going to do that anymore.

January 26, 2009

Guest Blog: The monster in our marriage

I've never had a guest blogger, but I was approached by Ellen of To The Max, and I thought it sounded like a fun idea. Ellen's an editor at a major magazine and is the mother of Max, a tenacious little guy with his own monsters. Her story feels awfully familiar.

Thank you so much, Ellen.

-- r

The monster in our marriage

It's the morning of a snowstorm that just started. My husband's with our four-year-old at gym class, and calls to say hi. Because there's a possibility that we might be snowed in for a few days, I tell him to grab a carton of milk from the supermarket on the way home and any other foods that'll carry us through. Dave walks in the door with a very small bag. Inside: a gallon of milk, a jar of salsa and a package of Chili Lime Tortilla Chips. I stare at him, then burst out laughing. We break open the chips and dig in.

This is Dave: A guy who's not always practical, but who sure knows how to enjoy life. This is me: A person who's overly practical and sometimes forgets to enjoy life. We always knew these opposite traits would balance us out, but we could never have imagined just how much so until our son was born. Max had a stroke at birth (not as uncommon as you think-it happens to about one in every 4000 kids). The two primary doctors at the hospital, who we nicknamed Dr. Doom and Dr. Gloom, told us the worst. That Max might never walk or talk. That he would have mental retardation. That he might not see well or hear. You name it, they warned us about it.

That was six years ago. Today, Max walks. Max talks with some words, and via a communication device (a Dynavox), gestures, his eyes. Max is bright. He's determined. He's curious. He's got a bubbly personality, and a wicked streak for teasing his little sister. Like Schuyler, he's also pretty damn cute, which has been a real asset. He has his challenges, but he's the opposite of a nightmare. And the one-two punch of my husband and I has been good for him.

Dave has always been able to just enjoy Max as a kid, whether he's playing monster with him, plopping him onto some motorcycle parked on the street and pretending to let him drive it or splashing around in the pool with him. Me, I'm always trying to sneak therapeutic exercises into his playtime. I'm the one who notices Max is growing out of his foot braces and needs new ones. I'm the research nut -- the first thing I did when I walked in the door after the hell days in the NICU was get online and look up information on strokes and therapies.

Early on, I heard that having a kid with special needs can cause a lot of tension in a marriage, even break it up. I don't know that it's exactly
benefitted ours -- I mean, come on. But I do think Max has made Dave and I realize how strong our bond is. We're able to work with each others' strengths and weaknesses, laugh through it all and keep each other sane. Well, most days.

We fight most often about what I consider Dave's “denial” and he considers my “pessimism” (pragmatic, I call it). A couple of years ago, we went to a doctor who told us, “I see Max has trouble using his right hand, it'll always be his helper hand and he'll mostly rely on his left.” After, we assessed the appointment in the car ride home. Dave said, “See? Max will be able to use both his hands!” And I said, “No! He said he won't really be able to use his right hand, and he'll need to make do using one! Hopefully, that one will work OK!” We're the glass half full/half empty couple. Or make that the salsa bowl half full/half empty. It works for us. Most important, it works for Max.

January 20, 2009

"The price and the promise of citizenship..."

"Our challenges may be new. The instruments with which we meet them may be new. But those values upon which our success depends -- hard work and honesty, courage and fair play, tolerance and curiosity, loyalty and patriotism -- these things are old. These things are true. They have been the quiet force of progress throughout our history. What is demanded then is a return to these truths. What is required of us now is a new era of responsibility -- a recognition, on the part of every American, that we have duties to ourselves, our nation and the world; duties that we do not grudgingly accept but rather seize gladly, firm in the knowledge that there is nothing so satisfying to the spirit, so defining of our character, than giving our all to a difficult task.

"This is the price and the promise of citizenship.

"This is the source of our confidence -- the knowledge that God calls on us to shape an uncertain destiny.

"This is the meaning of our liberty and our creed -- why men and women and children of every race and every faith can join in celebration across this magnificent Mall, and why a man whose father less than 60 years ago might not have been served at a local restaurant can now stand before you to take a most sacred oath.

"So let us mark this day with remembrance, of who we are and how far we have traveled. In the year of America's birth, in the coldest of months, a small band of patriots huddled by dying campfires on the shores of an icy river. The capital was abandoned. The enemy was advancing. The snow was stained with blood. At a moment when the outcome of our revolution was most in doubt, the father of our nation ordered these words be read to the people:

"'Let it be told to the future world... that in the depth of winter, when nothing but hope and virtue could survive... that the city and the country, alarmed at one common danger, came forth to meet it.'

"America. In the face of our common dangers, in this winter of our hardship, let us remember these timeless words. With hope and virtue, let us brave once more the icy currents, and endure what storms may come. Let it be said by our children's children that when we were tested, we refused to let this journey end, that we did not turn back, nor did we falter; and with eyes fixed on the horizon and God's grace upon us, we carried forth that great gift of freedom and delivered it safely to future generations."

President Barack Obama
January 20, 2009

I've got a feeling, just a hunch...

...that's it's going to be a good day.

January 19, 2009

A Lighter Shade of Grey

Tinkerbell wonders
Originally uploaded by Citizen Rob
We received results of Schuyler's ambulatory EEG tonight while we were driving to dinner. It's funny, but after everything we'd been through, all the anxiety and glue-headedness, I'd almost forgotten that we were waiting for a call back.

As I expected, the news was complicated. It's probably only in the movies that doctors deliver the "everything's okay!" or the "everyone's dooooomed!" speeches. Shades of grey, as I wrote before. But I think we're going to put this in the Good News column.

First and foremost, as in her initial EEG, Schuyler didn't have any seizures during the weekend of her ambulatory EEG, either. If she's having any at all, they are clearly infrequent enough not to pose a problem at this point. Her brain waves during her waking hours were pretty normal, in fact, which makes me think, with cautious optimism, that she's not having any absence seizures at all.

The grey shades come at night. When Schuyler sleeps, the left side of her brain experiences abnormal, unexplainable episodes that aren't seizures but are nevertheless troubling. They don't happen constantly and don't represent a consistent state of being, but they're there, and not random incidents but regularly occurring events. They only come when she sleeps, and they occur mostly on the left side.

Are they precursors to something more sinister down the road? Seizures yet to come? The vanguard of an alien invasion, foretold in Schuyler's strange Martian jabbering? Is this a harmless oddity of Schuyler's funky, broken brain or a Very Bad Thing? Is this a new phenomenon, or has it been there all along, just one more signature of Schuyler's monster?  No one knows.

Anyway, there it is. No absence seizures, which is good, but some weird scary boo sleepytime thing that could be nothing at all or the beginning of seizures, stigmata and possibly the Apocalypse. I do believe we're going to celebrate the absence of monster who isn't here just yet, even if its plane has just been delayed, and not worry about the other thing for the time being.

In six months, we'll go through this all over again. Perhaps by then, Schuyler will have forgotten about the glue in her hair. That's not what the smart money says, though.

Izzie Redux

Originally uploaded by Citizen Rob
It wasn't a huge surprise. She'd been slowing down a lot lately, which is probably why I was moved to write this post a couple of weeks ago. I didn't notice anything unusual when I gave my dwarf hamsters their favorite little yogurt treats yesterday; Isolde took hers from my hand and held it in her gimpy little paws, while Tristan took his and scurried suspiciously to the other end of the tank. Being unable to run, Izie had long ago decided to trust.

But when I checked on them this morning, I knew something was wrong. Tristan was up and moving around by himself, seeming a little out of sorts. But Izzie was nowhere to be found. I poked around in the bedding and found her curled up in the corner. She'd died in the night, apparently in her sleep.

Well, I'm a forty-one year-old, supposedly grown adult who probably shouldn't be overly sentimental about a hamster, but yeah, I'm pretty bummed. Izzie was a tough little critter, and her passing feels, I don't know, portentous.

More to the point, Schuyler likes to come and see the hamsters, mostly because she likes Izzie so much. Tristan is too twitchy and quick-footed for her, but Izzie would let Schuyler reach in and pet her and even hold her. As I said, when she lost her mobility, Izzie had long ago learned to trust the big hands.

When Schuyler woke up, I told her I had some bad news. I took her into our bedroom and showed her Tristan. She noticed immediately that he was alone; he was never without Izzie, not in the past year or so. I explained to her that Izzie had died in the night. Schuyler gave me a long hug, and for a moment I thought she might cry. But instead she just watched Tristan for a moment.

She looked up at me. "He's sad," she said, signing sad to me. "He needs a new friend."

So I suppose I know what we're doing today.

Goodbye, Izzie. For a tiny, broken rodent, you were weirdly inspiring.

Update, 3:45pm

Izzie is dead. Long live Zizzy.

(Schuyler's naming protocol is pretty straightforward.)

January 13, 2009

Fairy howl

I think I just took my favorite photo of Schuyler ever. If you want to know Schuyler and how she takes on a mean world that she nevertheless loves without limits, here she is.

January 12, 2009

Maya's Monster

Here's a story I happened across. On one hand, it's a fluffy, feel-good story about a little girl with a disability and her helpful hero dog.

But here's the thing. The little girl, Maya Pieters? She has bilateral perisylvian polymicrogyria, also known as congenital bilateral perisylvian syndrome.

Schuyler's monster.

Her BPP manifests itself very differently from Schuyler's. Unlike Schuyler, this little girl suffers from seizures, frequent and serious. Also unlike Schuyler, however, she speaks.

I don't really have much of a reason for posting this here, except that it occurred to me as I was watching the video that it was the first time I've ever watched video of (much less met in person) another child with BPP. How strange it was to hear her speak.

Also, Schuyler's dog, Max? Totally useless. Sorry, dude.

'Thrown Away' Dog Saves Little Girl's Life
By Laurie LaMonica

December 30, 2008

LANCASTER COUNTY, Pa. -- When the Pieters family adopted Jack, a dog once left to die in a dumpster, they hoped he would act as a constant companion to their daughter, Maya.

They never considered that the Terrier mix would also save the little girl's life, on more than one occasion.

Jack's loyalty -- and keen senses -- have proved that one person's trash can truly become another's treasure.

Just ask 8-year-old Maya, who inspired her family's trip to the Humane League of Lancaster County in 2004. When the Pieters saw how seamlessly Maya bonded with Jack, he had nowhere to go but out of the kennel, and into their home.

"Maya was down on her knees and her face as close to the gate as can be and he's licking her and I heard Maya talk more then to him then she had in a whole week," recalled Maya's mother, Michelle Pieters, of their first encounter with the dog.

The connection was exceptional for the young girl, whose condition forces her to struggle with normal oral and social functions.

When Maya was 3-years-old she was diagnosed with congenital bilateral perisylvian syndrome, an extremely rare condition that only 100 to 200 people in the world are reported to have.

The disease affects Maya's oral motor functions -- such as speech and swallowing -- and could cause seizures. But it also took a toll on Maya's self esteem. Always left out by other children, Maya became very withdrawn at a young age.

Maya's speech therapist, Donna Buss, suggested the Pieters family get a dog in 2003. She thought it might benefit Maya's socialization skills. Buss says Maya's shyness made their sessions difficult -- at the time, very little progress was being made.

So the Pieters launched a search to adopt the perfect dog. It took one year to find one that Maya felt comfortable with -- but the wait, in the end, was all the more worthwhile.

Though flea infested and dirty, Jack was the miracle for which the Pieters were searching.

Maya bonded with Jack instantly and the connection would prove more significant than Maya or her parents could have ever predicted.

Jack was sleeping in his crate one morning last year, when suddenly, without apparent provocation, he leaped from his bed and darted up the steps to Maya's room. The door was closed, but Jack sensed that Maya was inside -- and that she, for whatever reason, needed help.

The dog began to relentlessly claw and bark at the door, until Maya's family took notice of the dog's frantic state.

Jack, the Pieters realized, knew exactly what he was doing. Maya was found in her room, having her first seizure in her sleep.

Jack's urgent response to Maya's seizure probably saved her life, as the seizure was a new, unprecedented symptom of her condition.

The Pieters took to calling the little shelter dog "Maya's guardian angel."

Since that first episode, Maya has suffered other seizures. Each time, Jack has been able to preemptively sense when Maya is about to have a seizure. He has broken her fall, sat on top of her to help settle her convulsing body, and when she finally wakes up, licks her tears dry.

Jack has helped Maya in other ways as well. Upon adopting the dog, Maya's oral motor functions have improved drastically. Before Jack, Maya did not speak very often and was very sensitive to her face being touched.

Jack has helped Maya overcome these problems with routine face lickings, playtime and simply standing in as Maya's constant companion.

All of these accomplishments led to Jack's nomination for the Humane Society of the United State's "Valor Dog of the Year," an award to honor and celebrate dogs that have performed extraordinary acts of courage.

Jack competed against heroic dogs across the country, and although he didn't win the main prize, he was granted the "People's Choice" award.

Jack may have no idea he is nationally known for his good deeds. All he knows is someone once gave up on him, threw him away like a piece of trash.

And now, he is loved by a family, cherished by a little girl. In return, as much as Maya Pieters gave him a new chance at life, Jack has given her the same gift, as well.


Originally uploaded by Citizen Rob
Schuyler had a good weekend with her ambulatory EEG. She made the best of her cyborg status, even putting together a little headwear fashion show yesterday. She was a real trouper, and when we went to the neurologist's office this morning to have the gear removed, we though the worst was over.

Yeah. It turns out that the tape in her hair wasn't what actually secured the sensors in place. No, that would be the glue.


After washing her hair for about an hour and using everything from clarifying shampoo to dishwashing soap, Schuyler still has a sticky, persistent mess in her hair, stuff that reminds me in its consistency of the glue we used to use to put together model airplanes when I was a kid. It's not coming out easily. A call to the unfriendly tech who put this crap in her hair in the first place was no help. ("Did you try running a comb through it?" Really? Really?) Helpful friends on Facebook and Twitter, many of whom have been through this themselves, have suggested conditioner, oil-based washes, fingernail polish remover, Goo Gone, peanut butter, rubbing alcohol, peppermint oil, vegetable oil, mineral oil, baby oil, tea tree oil and a concoction involving aspirin, shampoo and Seabreeze. All of which we'll no doubt end up trying before this is over.

I'm annoyed. I am, in fact, profoundly annoyed, because I cannot imagine that in the year 2009, the very best way to secure EEG leads to a child's head is with glue. (For that matter, is there really no other way to measure brain activity that this? Isn't this technology from the 1970s? Is my kid's brain activity being monitored by machinery that predates the 8 track player?) We're nearing the end of the first decade of the 21st Century, popularly known as The Future. Really? Fucking glue?

The answer, I suspect, is of course they could develop something better, something with a bond that could be easily broken with a specific chemical compound design especially for the purpose. I wouldn't be one bit surprised to find that just such product already exists.

But why bother? Those of us who have been immersed in medical procedures for years learned long ago that while there are a lot of very caring doctors out there, the medical industry as a whole still struggles with the concept of the patient as a human being. This is especially true of pediatrics, where psychological and social development is particularly vulnerable.

Schuyler had her ambulatory EEG performed by pediatric neurologists, after all. You might think that this meant they were especially sensitive to the issues involved with children, including the social and psychological effects of the treatment and studies being undertaken. But when no one sees a problem with putting glue, and lots of it, in the pretty hair of a nine year-old girl and then sending her back into an ugly world that's already not very nice to a kid who is different, that's because no one's considering the psychological and social issues that might come as a result. Not even "pediatric" neurologists.

It's not a huge issue, not in the big scheme of things. We'll get all this crap out of her hair somehow, and if we don't, it'll work its way out, or it'll grow out. The larger issue for me is that once again, we are witness to yet another example of how Schuyler and her fellow broken children are marginalized by the medical industry.

It's one of the reasons I do what I do, and write what I write. Because Schuyler is more than a transportation unit for a scientifically interesting brain, and she's more than a case study to which an insurance payment claim may be attached. She's wondrous little girl, and putting glue in her hair because it's the easiest way to accomplish your medical task diminishes you and your industry, not her.

So yeah. I'm pissed. She's not too pleased, either.

8:15 pm

Update:  We went the all-natural route, working in coconut oil and peanut butter and letting it sit for a couple of hours.  She's in the bathtub now, and it seems to have mostly worked.  Her head smells weird but appears to  be glue-free.  So now we know.

January 11, 2009

Hawaiian Rock Star Princess Knight Cyborg

I'm going to go out on a limb and say that she's not been terribly traumatized by the ambulatory EEG this weekend...

January 6, 2009

One Week

So yes, let's take a look at this week, this one week in our lives here. I'd call it a roller coaster ride, if there existed a roller coaster that required both an oxygen tank for the highest altitude and a pressure suit for the subterranean low parts. Mostly, it's just a weird week.

Sunday. We started off the week with an all-nighter, in preparation for the Sleep Deprivation EEG the next day. Schuyler and I got through it with beverages, snacks, Cloverfield, Speed Racer and King Kong (the Schuyler "Good Parts" version, which basically skips the first hour, and includes the scary fish monster in the director's cut).

Monday. Well, you read about her EEG already. No seizures, but episodic abnormalities recorded. Neurologist said that he will schedule a new EEG, this one lasting 48 hours and requiring Schuyler to wear a mobile device for two days. After the unhappy ending of Monday's EEG, I'm not looking forward to telling her that she gets to do it again, and for, you know, forty-eight times as long. The doctor's office will call us to let us know when this new EEG will occur. If past experiences with neurologists are any indication, this appointment will be sometime in June.

Tuesday. Today, actually. The trade paperback edition of Schuyler's Monster came out. You went and bought a copy, plus two for your friends, right? No? Okay, well, here you go.

Wednesday. Who knows what tomorrow will bring?

Thursday. This is the day of my big author event at the Dallas area's extremely cool new independent bookstore, Legacy Books. (Beware, there's a loud thing on their website.) There's a wine bar, too. I'm just saying.

Which brings us to...

Friday. Turns out I was wrong about neurologists. When she gets out of school, Schuyler will be picked up by Julie, who will then take her to the neurologist to have her funky wire hat put in place for the weekend. I have no idea what it will look like, although I'm hoping it'll be something like this:

Schuyler will wear the funky wire hat until Monday, when I will take her back to have it removed from her no doubt slimy and vile little head. Then there'll be about fifty shampoos and as much ice cream as she can eat.

It was a delicate dance, telling Schuyler about her impending return to the EEG, which she ended up hating yesterday. She was resistant to the idea at first, but she responded very positively to that oldest parenting tool, the bribe. She says she's excited about it now, excited about proving that she can be a good girl, and a big girl, in order to claim her Prize. Her Bribery Prize.

Sometimes people ask me how I think Schuyler will react to the things I've written about her here and in the book. Perhaps I'm in denial, but I truly believe that she will read my words and know of my love for her above all else, and her grasp of the bond we share will only be strengthened by her understanding of how deeply that bond has run, her whole life. There is very little I have ever written about her that I think she might find upsetting.

But Schuyler, my love, my sweet darling girl, if you look back on this and read this entry from the vantage point of adulthood, I have a shameful confession to make. Do you remember the bribe I offered you in exchange for your cooperation in another pain in the ass EEG? The new Mac, your very first computer, the one I said I would buy for you when I got my next royalty check in February of this year, IF you complied with this new test?

Well, yeah. Funny thing. Turns out, I was already planning to get it for you anyway. Dick move on my part, I know.

January 5, 2009

Grey matters

Waking up, unhappy
Originally uploaded by Citizen Rob
We wanted a black and white answer, something sure, something where we could say "That's great news," or "That sucks, I'm going to get drunk". Something where our friends and family and readers could join us in celebration or console us as we got ready for the next big fight.

The reality that most special needs parents face is cloaked in shades of grey. We finally receive the answers for which we wait for so long, and we step back and look at them and say, "Huh. Okay then. What now?"

So here's the short version. During the hour or so that Schuyler was connected to the EEG monitor, no seizures were recorded. A number of episodic abnormalities were recorded, none of them bilateral and the majority of them occurring on the left side of her brain. Probably not surprising, considering the malformation of Schuyler's brain that is the signature of her monster, but it presents an unknown wrinkle nevertheless. These abnormal episodes aren't seizures. We're not sure what they are or what effect they have on her, if any.

More questions. More grey areas.

The next step will be an extended, 48-hour EEG, in which Schuyler will spend the weekend wearing a portable unit that will record her brain's electrical activity as she goes through her day. Not sure when this will happen, but we'll find out soon. Easy, right?

I'm not sure how it's going to work, actually. Getting her to go through another EEG might be a challenge. She was having a good time for the early part of the procedure. The tech was a lot of fun, and he let her help put the leads together with the tape and ask "What is this?" about every device and doodad he used. She loved that he could mysteriously understand every Martian word she said, as if he spends his days hearing worse speech than hers from more severely broken kids, which of course he does. She didn't even mind the stinky, sticky blue goo that went in her hair beneath the sensor contacts.

But when the test began in earnest and the lights began flashing, she suddenly began to take it seriously. I think she suddenly remembered, at least on some level, the endless tests and evaluations and medical procedures that predated her diagnosis back in 2003. By the time she woke up from the sleeping portion of the festivities and rubbed her little hands (and apparently just a little of the blue goo) in her eyes, she was well and truly DONE with the EEG. It has been years since I've seen her cry like that. She actually asked for Jasper, her oldest and most beloved teddy bear, and wouldn't let go of him for the rest of the afternoon.

I think I understand what she was feeling. Even though she was probably too young to remember much of it now, I think on some subconscious level, Schuyler was suddenly back in 2003 again, being tested and evaluated and confused by medical procedures which could not have possibly made any sense to her. For a while, Julie and I were in 2003 again. Not because of anything that was actually happening today, because really, the EEG was just about the least traumatic procedure imaginable. Nothing painful except for the irritation in her eyes (and really, that was just the blue icing on the already unhappy cake at that point), and no one was treating her like a patient instead of a person. And yet, the underlying feeling was the same.

Sometimes, most of the time, the monster isn't a thing we face. It's a thing we fear, a thing that exists not as a reality, which can be shitty but is at least something that can be grappled with, but instead as a growling "What If?" in the dark. When Julie saw Schuyler asleep on that bed, her head wrapped in wires and full of innocent little girl dreams, she cried, because that's how she purges it. She cries and then she gets back to work. I sat in a chair next to the bed, the lights turned down low as I watched my little girl sleep, and for a few minutes I let myself give in to the gathering gloom, the shadow that seems to creep around Schuyler in those moments. I didn't cry so much as let the feeling grip me. Tears in my eyes, perhaps, but not crying so much as feeling that little pit as it opened again, the one that we first saw six years ago and only occasionally have to peek into.

And then we pull ourselves together, we dispel the fears, if only for a little while, and when the lights come on, the shadows recede. And we get back to work.

We ask black and white questions, and we receive grey answers in return. And when I think about it, I guess that's probably for the best. I've seen far too many families who looked for black and white answers and only got black ones. I'll take grey.

January 4, 2009

"There will be snacks..."

For Schuyler's EEG, she has to be sleep deprived. We're staying up all night, watching movies.

Tomorrow may bring hard news or frustration, but tonight, it's Cloverfield and Speed Racer and King Kong (Schuyler's "Good Parts" version).  It's a good night.

A Confederacy of Monsters

On Tuesday, the trade paperback version of my book comes out. On Thursday, I have an author event at a fancy venue, with good friends there. And the thing is, I am really very excited about it all. But at the same time it feels distant, like party sounds coming from the house next door. My focus, borne out of five and a half years of vague anxiety suddenly made real, is aimed like a laser on tomorrow.

Tomorrow's the day. Tonight, Schuyler and I will stay up all night watching scary monster movies. (If you saw the lineup, you'd either be jealous or you'd call Child Services.) Tomorrow, a neurologist will glue sensors to her pretty head and attempt to flush out her monster.

I'm not asking for your prayers, because you know how I feel about your God and what he's done to my child. But I hope you'll think good thoughts for us and send whatever positive energy you can in Schuyler's direction. Could that represent the same thing? Perhaps. All I know is that we need answers, once again.

I wanted to take a photo of Schuyler for this entry, so I went in her room and asked her to grab her favorite monster. She picked this guy, a gift from my editor at St. Martin's. As I took photo after photo, she began explaining to me about tomorrow, about what they were going to do, and why. I was really surprised to see that she was processing this EEG and the reasons behind it; I've explained it to her, but I wasn't sure she got it until now.

Even more interesting to me was that Schuyler understood the connection between the monster in her lap and the one in her head. I get the sense that she loves them both, in her weird little way.

January 2, 2009


Longtime readers will know that I love dwarf hamsters. I once even ran an information site about them, which just goes to show you that everyone loves something weird and has a secret passion. Mine, as far as you know, is dwarf hamsters. There's weirder stuff to like out there than dwarf hamsters. Trust me.

My favorite dwarf hamster is the Roborovski hamster, and not just because of the name. Roborovskis are the smallest of the hamsters, and they're quite a bit different from their cousins. They live about twice as long, they don't mate as often, and while they are much more active and twitchy, they are also much friendlier than other breeds of hamsters. I've never been bitten by a Roborovski hamster. They're not very cuddly except with each other and don't really like to be handled, but they are otherwise very sociable little guys and I just love 'em.

There is a special mutation that has recently been bred in Roborovskis that results in white-faced hamsters, and when I found one and brought it home with a normal Roborovski mate, I was as happy as I could be. The brown hamster I named Tristan, and the white girl Isolde. I quickly came to call her Izzie.

A few months after she came home with me, I found Izzie one morning, lying on her side in her cage. Her eyes were open and she was alert, but it was clear that something was terribly wrong. She could barely walk and dragged herself on one side. I was heartbroken. Strokes are fairly common in hamsters, and there's not much you can do for them when they strike, except just make them comfortable. I didn't know what else to do for Izzie; I certainly wasn't going to try to put her out of her misery. I mean, how would you do that, anyway? So I watched her sadly, and I waited for the end that seemed sure to come.

Over a year later, I'm still waiting.

This isn't the story of a poor dead hamster; she's still around and still kicking. This is the story of a pretty little thing that suddenly became a twisted, skinny little scrap with bugged eyes and a funny walk. Izzie didn't die, and while she didn't exactly get all better, she did figure out how to walk around fairly quickly, and how to keep herself steady when she drank from the water bottle. Tristan became very protective and nurturing to her, hardly ever leaving her side, and so for the past year or so, I've watched these two hamsters, named after famous but doomed lovers. They've written their own story, however, and so far, it's been a happy one.

Every day, I go to their cage and I find Izzie sleeping, curled up grotesquely like a dead bug, her eyes half open. She looks dead every time, and so I remove the lid to the cage and blow gently on her. I can't help myself. And every time I do, she pops up, rudely awakened, and looks up at me with her bulging eyes as if to say, "Dude. Fucking quit it already." She is unmoved by my concern.

Izzie's not a metaphor for some larger issue, as tempting as it might be to try to turn her into one. She's simply a tough little hamster who refuses to die like she was supposed to, and her fat little mate seems to love her without limits. Every day I watch them, and I wonder about this world in which it is the broken and the seemingly forsaken that fight the hardest, for an existence that the rest of us take for granted. So I don't know. Perhaps she is a pretty good metaphor.

She still hates it when you blow on her, though.