Monster Slayers by the Bay

Schuyler and the Big Box of Words
Originally uploaded by Citizen Rob

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.

Writers' Guild of Texas appearance
Originally uploaded by Citizen Rob

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.

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

I am your San Francisco treat, baby

Obligatory shot with GGB
Originally uploaded by Citizen Rob

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.

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.

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."

Rockin' the Bee

"Daughter with rare disorder is cherished"
by Mary Lou Aguirre

The Fresno Bee, February 2, 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.

OTHER JOKES THAT I HAVE MADE THAT DO NOT ACTUALLY REFLECT THE TRUTH:

• 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!

Promotion, sans apologies

Monsters
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.

This touches my nerd soul on so many levels

(Thanks, Omar...)

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.

"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.

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

Isolde
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.)

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.

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.

Glue

Gluehead
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.

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.

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...

Schuyborg