Hunting Monsters at SXSW

Today at Support for Special Needs, for those attending SXSW this week and next:

If you were paying close attention back at the top, you saw that I mentioned Schuyler's presence. Yes, Schuyler will be attending both panels, and both conferences. (Only one of them will involve missing any school, in case you were getting ready to deliver a good scolding. A half-scolding will suffice.) Now that she's getting older, when I speak about Schuyler and larger disability issues as well, it feels strange now when she's not there, and not part of that conversation.

A Complicated Homecoming

I don't return home to Odessa very often. Probably not nearly enough, anyway. It's been almost three decades since I actually lived there. I left home a few weeks after I graduated from high school, back during the end of the oil boom and the beginning of some tough years for the place, and for my family. In the mid-80s, the oilfield economy was tanking, hard, and the publication of Friday Night Lights a few years later would train a spotlight on West Texas football and education and the community in a way that was ultimately good medicine but at the time probably felt a little like being kicked while they were down.

My father was to die suddenly a few years after I left, too. The aneurism in his heart burst as he stood in his yard talking to a friend; as a doctor later said, he was "dead before he hit the ground". I don't know why I always imagined a death bed scene like something from a movie, where he and I would somehow work things out before he died. What I got instead was a phone call, and a quiet six-hour drive home to Odessa, and another two-hour drive out to the remote cemetery at Paint Creek where he'd inexplicably chosen to be buried.

His last resting place felt ridiculous and cliched at the time, with its dusty plots and wild flowers and lizards, and most of all a kind of desert silence that felt almost loud. But that was then, I guess. Almost twenty-four years later, I can see why it appealed to him. I suppose most people pick a burial spot with the grieving people they leave behind in mind, but not my father. He thought of himself, and the kind of place he'd like to spend eternity, as if he would be doing so sitting in a lawn chair, sipping from that old plastic cup he always carried, the one with the words "The King" written on the side, perhaps with an irony I didn't recognize at the time, in his own hand writing.

So my father is removed from my hometown, and what's left are the family who still call it home. I should visit them more. I wonder sometimes if they think I don't care. I do care, very much. They've all continued to grow and age and have babies who then have babies themselves. My father is stuck in my head forever at the age of fifty-one, only five years older than I am now. If there was to be any wisdom or even self-awareness waiting in his future, it was ultimately denied him. Denied him, and all of us whom he left behind, hurt and wondering at his choices, and at his love. It was hard to see, that love. All these years later, long after it ever ceased to matter, I wonder if his love existed at all. He's no longer in Odessa, but his presence lingers, in memories and the places to which they're tied. Perhaps that's part of why I stay away. My hometown has grown ghosty.

Schuyler has been asking to see her Granny for a while, and my niece had a new baby at the beginning of December, so it felt like a good time to make the drive. As a retail manager, Julie is pretty much out of commission from November to the middle of January, so Schuyler and I pick a time when her mother wouldn't be home much anyway, the last weekend of the year, and we head west together.

Schuyler is a great travel buddy at any time, but going home is particularly fun. It's been a few years since she went back, long enough that the whole experience feels new to her. She sees the things that seem old and tired to me, but with new eyes. She doesn't see the desert like I once did. Schuyler sees a place that is rare and impossibly flat and ready for adventure, as if mummies or dinosaurs are waiting just out of sight. When I was her age, living there, Odessa felt like a prison, with a desert instead of walls. I thought I'd never leave. I saw places on television and in movies that seemed exotic simply because they were green, or densely populated, or on the cusp of a much larger world. New England could have been Mars.

Now, even the remote desert feels new. As soon as we pass the halfway point at Abilene, great spindly wind turbines begin to appear on the low hills on the horizon, and we notice the most unlikely of motion from their gigantic blades. These are the wind farms that have become the new face, and currency, of West Texas. Schuyler is fascinated by them, and I am, too, come to think of it. They seem so alien, like armies of robots in search of something. Even if they didn't represent a commitment to clean energy in maybe the last place on earth I'd expect it, I'd still love them. They add something to the landscape, something modern and peaceful and strong. It's hard to explain.

Odessa and the surrounding area are now in the midst of a boom, but it feels different than the one of my youth. I remember Odessa then, growing, gradually and organically, with things just generally getting a little weirder but a lot nicer as a result. Driving into town now, though, it feels very, very different this time. Housing is impossible to find, I'm told, and the lines at restaurants and local businesses are long and rowdy. The outskirts of town where my friends and I once did our drinking and lighting fireworks and making out are now built up, with lookalike strip malls and the same box stores you find anywhere in America. Passing into the town itself, things feel... diminished. The town of my childhood is still there, and it hasn't changed much except for growing more ragged. I'd hoped the new boom might save my home, and perhaps it will, in some sense. But from my eyes, those now of an outsider, it seems like new Odessa is simply building over the old. I guess that's the way it happens. Maybe that's why you can never go home.

We spend the weekend with my mother, who somehow manages to get older without growing old, and with my sister and her kids and her grandkids. (Yeah, that was a little hard to type.) By total coincidence, Schuyler's godparents are in town, so we get to spend some much-needed time with them. We eat at the fast food places of my youth and visit the sad little mall where I once hung out. We try to buy gear from the local (and new since I'd lived there there) hockey team, the Odessa Jackalopes, in part because the mascot is exactly as much fun as you'd expect (an angry rabbit with antlers) but mostly because there's something about the idea of a hockey team in Odessa that is too weird not to be celebrated. Sadly, the pro shop at "the Jack Shack" (as the Ector County Coliseum is apparently now known) is closed.

Schuyler has lots of questions about my home and my past. She wants to see the places I grew up, particularly the schools I attended. She wants me to show her the routes I walked home from school, as if the thought of doing so was the stuff of wild adventure.

When I post photos of my old schools and other shots around the area up on Facebook, some people take the opportunity to comment on how unattractive my home is. I get that. I recognize that it must be hard for people who come from pretty places to understand how those of us who grew up in harder environments could somehow still have had enjoyable childhoods, or that we might still have fondness for those places, and even find them beautiful. It's like anything else; we make plenty of jokes about "Slowdeatha" or "Odessalation", because we lived it. We did our time. We experienced our youthful days with grit in our mouths. But if someone else tries it, our defenses go up. It's the "he ain't heavy, he's my brother" effect, I guess.

The thing is, Schuyler doesn't seem to see it as ugly, or harsh. When she sees vast dusty acres of high grass and mesquite bushes, she imagines the snakes and jackrabbits and horny toads that must be hiding out there, just waiting for discovery. Schuyler has sand in her blood, I guess. She's got her father's weird love of the desert.

When we leave Odessa to return to Dallas, Schuyler again asks about my father. We leave the interstate and head southeast, for the tiny town of Robert Lee and the remote Paint Creek Cemetery a few miles away. As we drive out past Sterling City, the wind turbines return, like giants both protecting us and beckoning us further. When I see them, I wonder if they hold vigil over my father's grave now, but the road drops into a shallow valley and the wind farms fall behind us. When we arrive at Paint Creek, it looks completely unchanged, not just since I visited last, but in all those long, full years since I watched my father lowered into the chalky ground, taking his secrets with him.

He's keeping them there still.

My All, at Fourteen

This week always presents a natural time to stop and reflect on where Schuyler is in her life, with her birthday only a few days away. It's also the end of the year, so everyone's in this whole "looking back" mood anyway. It's a good time for marking transitions.

This year, it feels even more so. When I look back on Schuyler's first teenaged year, it feels like a great deal of significance took place, not all of it easily measured or commemorated. She doesn't come across as a different person than she was a year ago, but she just seems... more. More complete. More complicated. More damaged. Stronger. A little sadder. A lot smarter. And in some ways happier, too.

Thirteen was the year that Schuyler became serious about using her iPad to communicate. It was the year when the software and the hardware caught up with each other, and despite a few snags and professional lapses, it was the year when she began to assemble a team that is developing a real plan for how she moves forward. She still resists using AAC to communicate; once again, we recently had the semi-regular "But I want to talk like everyone else!" tantrum. I don't think she's demanding that the impossible change somehow. I think she just needs to howl at the sky every now and then, to protest the injustice and to fight the future a little. She's learning to put aside her protest when she needs to, and that might represent the best step forward that she's taken in a long time. This next year will tell.

Thirteen will almost certainly be remembered as her cheerleader year. She's still got some responsibilities for the spring semester, but not that much. This was the year that we crossed our fingers and stepped into uncertainty, handing our daughter over to a situation that could very much work, or very much not.

The verdict? I don't actually know. Schuyler loves cheerleading. She's incredibly proud of herself, and she participates with real joy and enthusiasm. When she's actually cheering, she's on top of the world.

But there are... complications. The inclusive environment that we'd hoped for feels more like the "you can stand here and be happy" school of inclusion. Schuyler hasn't received the extra help that we'd hoped she might get, and wasn't even allowed to move to the back row of girls so she'd have some visual cues to help her, despite both Schuyler and us making that request. The mix of girls broke into cliques almost immediately, and stayed that way. That's never good news for the kid who's different.

It's the little things that start to feel not so small. As we discovered last week, Schuyler's name wasn't even spelled correctly on her locker poster OR the official board at the school, and I guess it's been that way all semester. That might sound minor, but it sends a message.

I asked Schuyler if she'd pointed out the spelling error to her cheer coach, and she said no. She's being frustratingly oblique about the whole thing. She has a good time cheering, but she also says she doesn't want to do it again next year. Schuyler has taken the parts that she's enjoyed, and she's given up on the rest, and I'm saddened for her but also proud of her, for her pragmatism and her unflagging positivity.

A couple of months ago, after her request to move to the second row of girls was turned down, Schuyler and I walked to the car after the game. She down and sighed.

"I wish she would treat me like a real cheerleader," she said. And then she didn't want to talk about it any more.

So. That's cheerleading.

Most critically, thirteen was the year that Schuyler began taking seizure medications. Her neurologist had determined that she was likely having partial complex seizures for some time before, but it was only when the aftereffects of a recent seizure were bad enough to send her home from school that he decided it was time. Her MRI showed changes as well. We didn't disagree with his earlier determination that it wasn't time for meds, and we don't disagree with him now.

She's ramping up to her full dosage; she'll be there in a couple of weeks. So far, she's just beginning to show some side effects. None of them are unmanageable, and she's aware of the changes and tries to compensate for them. She understands that this is all in the service of helping her brain heal and manage itself, and she's game, to the point of clarifying how she feels so that I can get it right for this post. ("Now my brain feels weird and strong, like smart.")

I'm proud of her; she knows that the "brain pills" are fucking with her, but she grasps the big picture and never ever tries to beg off of taking them. We should have a better idea in the next few weeks if this is going to help and if she's going to be able to manage the effects.

So her birthday, and the holidays, arrives at a moment of transition, of a kind of change none of us have ever experienced together. Schuyler's having a bit of a rough time right now, but she's holding things together. She leaves thirteen behind at a crucial time, and she's going to need the love and support and, yes, the patience of every person in the world who loves her.

Fortunately for her, that's a lot of people.

What will fourteen bring? It'll bring high school, two words that encompass all the fear and all the potential and all the excitement in the whole world for her, and for us. Fourteen will include meeting new friends and even new family. It'll be about finding a balance that has eluded her. Balance in how her school implements an inclusive curriculum. Balance in her mysterious brain chemistry. Balance between her dependence on her parents and her desire to take flight on her own. Balance between her natural exuberance and the reality of her world. Schuyler's both younger than her chronological age, and wise beyond her years. That may be the trickiest balance of all for her.

Thirteen was big for Schuyler. Thirteen was unyielding and rough, but it was transfiguring and significant. Thirteen showed Schuyler, in ways it hadn't before, that the world might eat her up if she's not careful, but I think it also might have just introduced her to the empowered young woman she's going to be.

When asked if she had a message for the world, Schuyler said,
"Go see The Hobbit and have a happy New Year!"

With Shea

(Updated below, 11/4/13...)

Lately, we've been watching the story of Shea Shawhan very closely.

There are a few reasons I've been so interested. One is that the story is just so awful. Shea is a high school junior who suffered a brain injury at birth and has been developmentally disabled ever since. She also experiences pretty serious seizures. The news stories I've read have all stated that she has the intellectual capacity of an eight year-old, and while I usually shy away from those kinds of statements (I don't know that most kids with developmental disabilities develop at equal rates in all areas of their minds; that's certainly not true of Schuyler), it nevertheless allows the reader to at least try to understand what her high school life might be like. In a lot of ways, she seems very much like Schuyler.

Her disability isn't the awful part, not one bit. By all appearances, Shea's life is a rewarding one. She plays softball at her school and is even on the cheerleading squad. She seems well-loved and well-adjusted, living her life on her own terms.

No, the awful part is the texts. For months, Shea has been receiving anonymous (of course) text messages, harassing her, threatening her, and heaping the most vile insults concerning her disability on her. I'm not going to repeat them here. The texts were generated at a website that masks the user's actual number, so for the time being, the identity of the sender is hidden. I can't imagine that will be the case for long.

As I said, I've been following this story for several reasons, beyond just how awful it is. Shea reminds me of Schuyler in a lot of ways. Seeing her speak on television, it is very easy for me to imagine an older and verbal version of my daughter. Shea is eighteen; that's an age that isn't all that far down the road for Schuyler. I've followed the story because like Schuyler, Shea is a cheerleader, and is working hard to walk in the world of her neurotypical classmates. I understand how tricky that can be, and I get exactly how much she probably wants to be able to do so. It's a desire that Schuyler shares, and one than we try hard to accommodate, even though we know how treacherous and heartbreaking that choice can be, the decision to pass and to try to carve out a space in an often unsympathetic neurotypical world.

Our interest in Shea's story goes deeper still, however. Because Shea attends Plano West High School.

The school Schuyler is on track to attend in three years.

Before I go further, I should hasten to add that so far, Shea's story has taken a pretty positive turn. Her mother was extremely proactive and took the story public, even working towards creating a nonprofit, ImWithShea, Inc., to campaign against bullying. Cyberbullying is a justifiably hot topic in the news media these days, and the story got picked up in a hurry. As a result, the student population and the community at large have been very supportive of Shea, and she's become something of a local celebrity. (Schuyler has been particularly taken with Shea; she keeps asking about her "little monster", and about her cheerleading. I think Schuyler is intrigued by the possibilities that someone like Shea Shawhan represents.) Shea is feeling a lot of love at the moment, and the students at Plano West have gone out of their way to illustrate that the person or persons sending those texts don't represent their school.

It's all been very positive lately, but I worry. I worry that, like many of the special needs kids who are celebrated in the media, the world might return to its harder ways for Shea once the camera crews leave to follow the next shiny thing that catches their collective eye. I worry that the hate that was sent her way before is simply waiting patiently for the lights to go out so it can re-emerge. I'm concerned because despite all the positive lip service coming out of the Plano West student population, not one kid has come forth with any knowledge of who is committing these atrocious acts. I understand that there's a kind of code in teen culture, one that exists outside the access points for adults. But I also get that it's perhaps easier to adhere to that code if you can justify your silence by seeing classmates with developmental disabilities as being somehow less. Less deserving of your empathy. Less valuable to your school community.

Less human.

Most of all, even though I know that this is the kind of thing that can happen anywhere (as if that's comforting), I still find myself thinking "And this is the school that we're going to send Schuyler to?"

Schuyler has never been exposed to online hate speech. Not directly, anyway. Her access is still carefully moderated. She's protected from direct contact on social media, and only a few of her friends communicate with her via text message. That won't be the case forever, but for now she's mostly uninterested in having more online autonomy, and we're certainly okay with that.

One day, and soon, that'll change. Her special way of communicating is perfectly suited to social media, and it's only a matter of time before she steps into a world than a good many of her classmates already occupy. What will happen then? Is that online world populated by jackals? Will Schuyler emerge into an online world, without her parental buffer, as fresh meat?

Schuyler doesn't always understand her classmates and how they relate to her. Cheerleading hasn't helped like we'd hoped it would. In some ways, it has served as a microcosm of the middle school teenaged girl experience, a place that has less in common with the Disney Channel and more with Lord of the Flies. We've been asking ourselves over and over if letting her be a cheerleader was the right choice, but of course it's far too late for that to be a productive conversation. She's working hard to fit in, and she's also committed to it. That's her choice, not ours.

Shea Shawhan is a cheerleader at the very school Schuyler is scheduled to attend for 11th and 12th grade. That fact alone suggests possibilities for Schuyler that we never entertained. That's a positive thing, there's no doubt about that. But clearly, at least one person at Plano West doesn't appreciate those opportunities being extended to kids like Schuyler and Shea.

The fact is, there are many, many people in the community who don't believe in inclusion. Sometimes they express themselves poisonously, like the anonymous texters harassing Shea. But sometimes these people stand up, at school board meetings or in letters to the editor, and use language that sounds measured, even reasonable. They don't always sound monstrous, which scares me even more than the cyberbullying.

Some parents don't want our flawed, beautiful, imperfectly perfect kids in the same classes as theirs. Some students don't want to sit next to them at school. Some members of the community don't want to see cheerleaders or homecoming queens with disabilities walk onto that football field on an autumn Friday night. Some don't want authentic relationships with the disabled. They are put off by imperfection. They fear difference. They may be horrified that someone said those things to Shea, but in their secret hearts, they may have even thought similar things themselves.

I don't think there are very many people like that, not now, in 2013. I've seen communities stand up for kids like Shea when their situations become public. I've witnessed kids treating Schuyler with genuine friendship. The world that kids like Shea and Schuyler occupy is mostly good. I truly believe that. I don't believe it all the time, perhaps, but my faith in humanity can take a little shaking without falling to pieces.

But we've all seen so many tragic cases of what school bullying can lead to. We've read the heart-crushing stories of the kids who have had more than they can bear, and we've seen them end their lives. It has become one of those media narratives that is depressing in its familiarity. It happens to kids who are different, and some of those differences can seem insignificant to us as adults.

Kids like Schuyler and Shea are different in ways that aren't always subtle, and which are almost never overlooked by their peers. So far, Shea Shawhan seems to be handling the situation with courage and grace, thanks in no small part to a great deal of family and community support. I don't know how Schuyler would deal with that same kind of situation. My heart tells me that she wouldn't take it well at all. I hope I never get to find out.

Photo zazzed up by Schuyler

---

UPDATE, 11/4/13

Before I wrote the above post, I contacted Kerri Riddell, Shea's mother, to make sure she would be okay with me writing about her daughter. She very kindly and enthusiastically agreed, and what followed was a correspondence that quickly shifted to direct contact between Shea and Schuyler. Shea invited Schuyler to come meet her at a Plano West football game last Friday, and we were happy to accept the invitation.

(A local news station ran a short piece on the game. Watch all the way through for a surprise in the last five or ten seconds.)

I'm not sure what to say here about the whole experience, mostly because Shea's story is hers to tell, and her mother's, but certainly not mine. I will simply say that it was extremely emotional for everyone involved, with two very unique girls who were happy to meet each other, even as their own individual disabilities and communication issues presented challenges. At the end of the night, Schuyler was overwhelmed enough to cry, something she hasn't done in a very, very long time.

I don't know if they'll meet again. But I sincerely hope they do.

Please visit I'm With Shea.

Conversations

Today at Support for Special Needs:

There has been so much conversation, so many choices to be made, all focused on enabling Schuyler to have the opportunity to fully realize the potential of the technology that so many people worked so hard to provide to her. That technology has changed her life. The early years are crucial to language development. It was almost too late when she first started at the age of five, and we did what we had to do to give her that tool before the doors slammed shut for good, pride and principles be damned. I would do it all over again, except years earlier.

Tooth and Claw

Today at Support for Special Needs:

Overall, it wasn't a bad IEP meeting. Most of the team was very responsive to the philosophical shift we asked for, and they seem eager to find a way to engage with Schuyler in a more comprehensive way. It did feel a little like IEP meetings of old, where we fought tooth and claw for what we felt our daughter needed. It was emotionally exhausting, like being attacked by vampires and bled dry,and we both felt like we'd resorted to becoming Those Parents for the first time in years. Not a great feeling, but a necessary one, I guess.

Schuyler's poem, recopied by memory as we took the photo she wanted for her blog post.

Field of Dreams

Today, over at Support for Special Needs:

It's so easy to get caught up in the day-to-day issues and the differences and the anxieties of raising a kid with special needs. It's easy to forget that they have a lot of the same dreams that the rest of us had, about summers spent in itchy uniforms with local sponsors' names stitched on the back (I played for the Odessa American, the local paper) and breaking in a new glove that wasn't right until it looked like it had been run over by a truck a few times, and that perfect once-in-a-season swing that sends the ball into forever.

The Trophy

Today, at Support for Special Needs:

Like their missing friend, every player on that field earns that trophy. For the members of these teams, there's no such thing as "just showing up".

Guest Author to Discuss Saga of Raising a Child Without Words

Guest Author to Discuss Saga of Raising a Child Without Words

Robert Rummel-Hudson, author of Schuyler’s Monster, will speak April 9 at The College of Wooster

April 4, 2013

Contact
John Finn - 330-263-2145 - Email

WOOSTER, Ohio — Robert Rummel-Hudson, author of Schuyler’s Monster: A Father's Journey with his Wordless Daughter, will share his story at The College of Wooster of Tuesday, April 9. His talk, which is free and open to the public, begins at 7:30 p.m. in Gault Recital Hall of Scheide Music Center (525 E. University St.). A book signing and a dessert reception will follow the event.

Schuyler’s Monster is the story of the relationship between a precious little girl and her family, particularly her father, struggling to find the answers to a child’s silent world. The book chronicles how their relationships formed without traditional language against the expectations of a doubting world.

Schuyler was diagnosed at 18 months of age with Bilateral Perisylvian Polymicrogyria (BPP), an extremely rare neurological disorder caused by a malformation of the brain that can affect the patient’s speech and fine motor control; cause partial paralysis of the facial muscles, tongue, jaws, and throat, as well as difficulties in speaking, chewing and swallowing; and result in sudden episodes of uncontrolled electrical activity in the brain, leading to possible grand mal seizures. Schuyler communicates through an Alternative Augmentative Communication Device (AAC), which is manufactured in Wooster by Prentke Romich.

Schuyler’s disability had a profound impact on her father, who went from a sarcastic, befuddled dad to a special-needs parent. Thrust into a battle against this rare and invisible disorder, Rummel-Hudson chronicles his own depression, his past family dysfunction, and the nagging suspicion that he was not the right person for the job. In the process, he discovers a sense of purpose and responsibility, and becomes the father and advocate that Schuyler needed to help fight her monster.

Rummel-Hudson’s lecture is sponsored by Wooster’s Department of Communication, the campus chapter of the National Student Speech Language Hearing Association (NSSLHA), the Cultural Events Committee, and Cross Cultural Connections.
Additional information is available by phone (330-263-2647) or e-mail.

Buddy and the Way of Change

The way of the world is the way of change.

Just ask Buddy. If you can find him.

When we first moved to Plano almost seven years ago (it seems so strange to me to even say that, so impossible that we've been here that long), one of the first things we discovered was that living next to a duckpond and a city greenbelt meant a steady parade of interesting wildlife, like coyotes and a bobcat (named Bob, of course) and herons and even a snapping turtle that looked a little like something from Loch Ness. But our happiest discovery was a toad living just outside our apartment. We named him Buddy, for reasons that have long since escaped me.

Buddy would make a regular appearance right outside our door, and even in the beginning, he showed little fear. Being a twelve year-old boy at heart, I was never able to resist the urge to pick him up in those early years, and he expressed his displeasure in the way that all toads and frogs do. I believe they drink water all day just in case some manchild insists on picking them up.

But as the years passed, Buddy stopped peeing when I picked him up. He would simply hang there while I held him and showed him to Schuyler, who adored him from the beginning. He stood still while I took his photo. One night, I went outside and sat on the little stone wall next to our apartment and watched Buddy hunting for bugs. He had grown so accustomed to my presence by then that he went about his business without paying me any attention. I sat maybe two feet from him while he stalked his prey. As far as animal experiences go, it was pretty amazing.

Over the years, Buddy has remained a constant summertime companion. We watched him as he relocated from the wall to a gap next to a manhole cover about ten feet away, and we saw him take on a lady friend. A few weeks ago, I watched him eat a not-small gecko, which was a disturbing reminder that in the world of small animals, toads and frogs are actually relentless killers. I was amazed that Buddy had been with us for so long until I looked up toad lifespans and found that toads can live up to forty years. Can you imagine that?

And then, shortly after the gruesome gecko incident, Buddy disappeared. It has been weeks since I've seen him. Did he move away, following a shift in his food supply? Did his new chicky friend want a bigger place? Did one of the herons that lurk near the pond make a snack of him? Or even the snake whose shed skin we discovered in the grass last week? Did Buddy meet with tragedy, or did he simply ease on down the road?

The way of the world is the way of change. We say our goodbyes and we move on, and we do so with hearts that are heavy or with souls that are electrified with possibility, and we take pieces of all the homes and lives that we've led before. Those pieces become part of the complex tapestry of ourselves. Some are bittersweet and even tinged with regret, but they're all part of who we are, and who we are to become.

When we moved here, we did so powered by hope. Hope for this place, hope for Schuyler, hope that we'd found a place that could be home. And here's the thing. It was. Plano was a good fit for us for a long time before it soured. I don't regret moving here, not one bit. It was the right thing to do, and it saved Schuyler as much as any other choice we ever made.

Now that things have stagnated and now that Schuyler's future and whatever independence it might contain loom larger and more immediate, we could have stayed longer. Perhaps we should. And given the precarious job situation, perhaps we will be forced to do so a bit longer. But it's time to go. The way of the world, and the nature of change, is that it is rarely convenient. Change involves the breaking of things, not just building but rebuilding.

It's not easy. If it was, we'd all embrace change the way Schuyler does. She lives for change; she thrives on it in a way that runs counter to almost everything you've ever read about kids with disabilities. For Schuyler, their are no routines, only ruts. And so in her mind, the idea of moving to Chicago and starting at a new school and having new friends and expanding her family, it all makes perfect sense. She admitted to me again recently that she doesn't like her school now and doesn't have any real friends. If you're not a parent, I'm not sure I can explain to you how horrible and helpless that makes me feel. If you are, no explanation is required.

For Schuyler, change involves possibilities that are a little heartbreaking to me. She is eager to leave some things behind, and her ever-present optimism and belief in the future remains one of the more poignant aspects of her life to me. There's a lot that Chicago represents to us all, in ways that will become much more clear to everyone soon enough. We all have our personal as well as family reasons. But to Schuyler most of all, I think there's a persistent hope, possibly naive yet very real, that this time, she will find her place and her people.

I don't know what happened to Buddy, or if he'll return. If he does, one day in the hopefully imminent future I'll go pick him up one last time (from above, of course; pee on me once, shame on you...) and say goodbye to the only neighbor I ever really cared about. If Buddy has truly moved on, however, I can only say that I wish him well in his uncertain future. I wish the same for us all.

---

Update, 7/17: Buddy has returned! He let me pick him up last night without pissage, although he declined to have his photo taken. When I asked where he's been, he said he didn't want to talk about it. I'm guessing Vegas.

The End of an Experiment

There's a new post over at Support for Special Needs. My thoughts on the conclusion of a program that really did make the difference in Schuyler's life.

The Shiny Future

It's Monday, which this time means I'm at SXSW in Austin (the Prodigal Son returns!) speaking on a panel, and also that there's a new post over at Support for Special Needs. Are these two things related? Maybe a little.

If you're in Austin today, it's not too late to come say "Hi, Rob!" or "You suck, Rob!" or whatever. I'm cool either way.

Not alone, although not entirely not alone, either

A few days ago, when Schuyler asked "Are you going to come eat lunch with me?", some of you thought it was a bad idea, maybe leading to further ostracization from her peers. But I think everyone knew what I was going to do. And, really, how else was that going to go down? How do you tell a child who is experiencing problems making friends that yes, you know she wants you to come eat lunch with her at school, but sorry, that's just not going to happen? As Julie said, "She's lonely and she wants to eat lunch with her father. How is there more than one possible answer to that?"

So yeah. Yesterday, with the school's permission, I ate lunch with Schuyler in her school cafeteria. She was thrilled, I had a good time, and perhaps most importantly, I got a better idea of what's really going on.

It's... complicated, I guess.

If you, like me, were imagining Schuyler sitting lonely and forlorn by herself at the lunch table, I am very happy to report that she's not. Not even close. As soon as she came down to the main office to fetch me, she took me to meet the people at her table. This was not what I expected.

Schuyler doesn't eat lunch alone. But she kind of does, in a way.

Schuyler's table is populated by a regular group of kids who are familiar with each other. It's apparently the same ones every day. They are kids with special needs, and they all sit together and are checked on periodically by teachers. They are taken care of, for sure, and for the most part they seem to get along just fine. I can't tell you how the kids feel about it, other than my own. I got the impression that many of the kids at the table have somewhat more serious impairments than Schuyler. They appeared to feel safe at their table, and that is tremendously important. It's probably the MOST important factor of all.

But as I said before, it's complicated. Schuyler and I talked entirely to each other, almost completely apart from the rest. She didn't engage with them, and they didn't engage with her. There was one notable and very encouraging exception.

There was an awesome little girl sitting next to Schuyler with whom I chatted over the course of lunch. In our conversation, I asked her if their lunch table crew was assigned and if everyone else was seated in a specific place. She said that no, anyone can sit anywhere they want, or (perhaps more to the point) with whomever the want. Schuyler piped in that there's never room at any of the other tables. "No one wants us to sit with them," she said.

So I don't know. On one hand, I understand how their table can be a sanctuary, and a way for the teachers to monitor everyone and make sure their needs are being met. That's not a small thing, and we have no problem with the special education team setting up this arrangement if they feel it works best for the kids. These teachers take their kids seriously, both educationally and as a community. Ultimately, we trust this special education team, completely.

At the same time, however, the thought of Schuyler's table as a kind of typical-kid-enforced Island of Misfit Toys, that saddens me. It happens, a lot, and from what I remember of that age, it is perhaps inevitable on some level. But still.

---

As we discussed the lunch situation after Schuyler got home, something very interesting began to reveal itself. I understood why Schuyler said she eats alone now. She doesn't really identify the people who sit at her lunch table as her friends, which was a little baffling at first since she was incredibly nice to them and introduced me to them all. And that little girl I talked to was great. It's not my business to describe someone else's child to you, so I'll simply say that her impairment appeared to be entirely or mostly physical, not developmental. She seemed to really like Schuyler and also took care of some of the other kids despite her impairment. I liked her immediately. I have high hopes for this relationship, assuming they're not actually mortal enemies and I just didn't pick up on that.

But much like with her typical classmates, Schuyler hasn't made connections with any of them, not on the level of real friendship. And by the time I left the school, I suddenly understood why. Schuyler may just have the same problem with the kids at her lunch table that she does with everyone else.

The neurotypical kids at Schuyler's school may not understand how to build authentic relationships with persons with disabilities. But actually, neither does Schuyler.

She's different, particularly in how she communicates, and that can be a daunting obstacle for typical kids. But she's equally stymied by the communication challenges between her and kids with more serious developmental disabilities. I've written before about how Schuyler stands astride two worlds, being ambulatory and also socially adaptable enough to almost pass in the typical world but also being significantly challenged enough to be forever different.

Sometimes that duality is a gift. In this case, when meaningful friendships are hard enough for her to understand, much less form, it is probably standing in her way. It's not that she doesn't see value in her special education classmates. Much to the contrary; she is as loving and as fiercely protective of them as ever. But her ideas of what friendship means are probably delivered to her mostly through a neurotypical lens, via television and through what she observes in her integrated classes. Her understanding of those typical friendships is limited, and extremely naive. Schuyler tries hard but doesn't quite succeed at being typical. Apparently she's not entirely successful at being disabled, either.

The good news is that Schuyler's exceptional special education director is extremely open and enthusiastic about getting on board with a mentoring program like Best Buddies Texas. A mentoring program would be a very important step in teaching Schuyler's typical classmates how she can be a valued friend and classmate.

It hadn't really occurred to us until now that Schuyler might need a little extra help in that area as well. She's so close. I'm confident that she'll get there.

Well, he did ask...

This might be a story of how, in a moment of truth, I failed to properly advocate for Schuyler, and how it ultimately didn't matter. Or it might just be a cute little anecdote. It may very well be an indication that everything is going to be okay. You decide.

Last night, Schuyler and I were at a favorite semi-fancy grocery store in our neighborhood, looking for a birthday cake for Julie. (I know, a day late. Don't judge.) We don't go there all the time, on account of that whole "not made of money" thing, but it's a nice place with an interesting clientele. A few weeks ago, I found myself standing next to one of my favorite actors from one of my favorite tv shows, for example. (Idea for a new show: Looking at Beans with Buddy!)

There's a slight snoot factor with some of the shoppers, but the people who work there are super nice, and the store hires a lot of persons with disabilities and doesn't hesitate to present them up front as the face of the store. That matters to me, a lot.

When Schuyler and I shop, we have fun. She's still young enough and... odd enough to find adventure at the grocery store, and really, so am I. (Well, not so much with the young, but certainly the odd.) On yesterday's trip, we stumbled across a display of very cool holiday hats, and we were trying them on and being goofy when a gentleman stopped and watched us for a moment. I was posing for Schuyler and she was laughing and jabbering happily. As she does.

The man waited until he caught my eye. "Is there something wrong with her?" he asked.

He didn't say it rudely, and I suppose he might have even thought he was simply being curious. But he said it, and he said it right in front of her, as if she wasn't there, or more to the point, as if she wasn't capable of understanding what he said. An assumption, far too common, made based on the fact that she didn't communicate in a way that he understood.

I would like to be able to say that I responded with patience and took advantage of this teachable moment to educate him on Schuyler's disability and his own need for empathy. And really, I wouldn't mind reporting that I instead came back with some clever zinger that put him in his place, either.

But honestly? I did neither. I stood there for a moment, dumbfounded. I dropped the ball.

The ball did not stay dropped for long, though. Schuyler scrunched up her face, pointed to the man and gave him a thumbs down.

My hero.

The end of the story is a little anti-climactic. When I saw Schuyler, I broke up laughing, and due to my persistent holiday cold, that laughter led to a coughing fit. I couldn't stop, and that cracked up Schuyler, who then started laughing her goony little laugh. So basically, we answered him with laughter and coughing. The man just sort of walked away while I bent over coughing and Schuyler pounded on my back, still laughing.

I guess we answered his question. "Yes, she speaks Martian and I have tuberculosis. Happy holidays."

So there you go. Self-advocacy at its most concise. I like to think we're raising her right.

Soccer monster

For an hour every Saturday morning for the past two months, Schuyler has strapped on her shin guards and pulled on her jersey, and joined her friends on an indoor soccer field in Frisco, Texas.

Schuyler's team is the Wizards. They've been largely the same team for two seasons now, and despite their record on the field (they lost all of their games except for two, which were ties), I hope they stick together next time, too. There are mostly small players on the team -- Schuyler was probably the biggest -- but they played with a lot of heart and their coaches really worked hard with them while remaining positive the whole time.

We've toyed with the idea of trying to get Schuyler into a neurotypical soccer league, but we went and observed some of them practicing, and it was daunting. I don't know about your town, but in Plano, league soccer is intensely competitive. I talked to some people who knew a little about those leagues, and they all gently suggested that our instincts were correct and Schuyler might just get eaten alive.

So she continues with Miracle League, but on what they call the Unified League. These teams are set aside for kids like Schuyler who are ambulatory and don't need a buddy to help them out. There's a regular league for kids who need a little help, and another for kids in wheelchairs. It's not a perfect division of the kids, as some of the other Unified players are much older and much MUCH bigger than the other kids, but it still mostly works for the kids.

Schuyler loves to play soccer. She dances on the field, and she gets mad at the big kids and gets in their mix whenever she can. She gets frustrated when her team misses a goal, and she celebrates wildly when they score. She knows that her teammates are different and is kind and protective of them. She knows that the players on the opposing team are different, too, and she's mostly kind to them as well, aside from a certain amount of posturing. In short, Schuyler plays like it means something, and yet at the same time she plays like it means nothing more than the fun of play. I'm sad that the season is over, and I can't wait until it starts up again this fall.

Sometimes I come here to talk about big things. And sometimes? I just want to tell you that my kid plays soccer, probably like most of your kids, and I'm proud of her for all the same reasons you're proud of yours, as well as for all those other monstery reasons I choose not to acknowledge just this once.

"Where justice shall roll down like waters…"

Heathens at the gate
Originally uploaded by Citizen Rob

I delivered the sermon at a church on Sunday.

Okay, I know. But that's not as unlikely of a statement as you might think. I spoke at the Community Unitarian Universalist Church of Plano, so this isn't like, you know, that other time. Unitarians are a pretty accepting bunch. As one of them said to me after the service, "There's a saying that Unitarians are just Agnostics who have kids."

I delivered a sermon, recited a short excerpt from the essay I contributed to My Baby Rides the Short Bus and even read a story to the kids. (A Bad Case of the Stripes, by David Shannon) Everyone was exceptionally nice, I had a lot of very interesting conversations and no one made the sign of the cross or spoke in tongues before running shrieking from the room. It was my first time in a church in longer than I can remember; even my wedding took place in a university chapel, not an actual church. I felt very comfortable there. We might just have to go back for a visit one day.

If you're interested, both my reading and the sermon (which was really more of a speech) are available online at the church's sermon archive.

Immediately after I spoke, the congregation sang what I realized was a very specifically chosen hymn, "We'll Build a Land", that I wasn't familiar with, despite my years of playing church gigs as a semi-professional trombonist. I did a little reading and discovered that the words come from Isaiah and Amos (also the source of Martin Luther King's famous citation "Justice shall roll down like waters, righteousness like a mighty stream").

The hymn is quite simply a call to action. It invokes the same sense of community, of "the village", that I've been speaking about in every speech I've given since my book came out. It doesn't rely on God to make things right, but rather calls on all of us to bring peace and justice to the world. I think Jesus taught the same, not that God would come down and clean up our crappy, angry world for us, but rather that we should live lives that lead to righteousness. We have to take care of each other, and of the afflicted most of all.

Well, that's my understanding, anyway.

We'll build a land where we bind up the broken.
We'll build a land where the captives go free,
where the oil of gladness dissolves all mourning.
Oh, we'll build a promised land that can be.

Come build a land where sisters and brothers,
anointed by God, may then create peace:
where justice shall roll down like waters,
and peace like an ever-flowing stream.

We'll build a land where we bring the good tidings
to all the afflicted and all those who mourn.
And we'll give them garlands instead of ashes.
Oh, we'll build a land where peace is born.

We'll be a land building up ancient cities,
raising up devastations from old;
restoring ruins of generations.
Oh, we'll build a land of people so bold.

Come, build a land where the mantles of praises
resound from spirits once faint and once weak;
where like oaks of righteousness stand her people.
Oh, come build the land, my people we seek.

Road trip

Smartass fortune cookie
Originally uploaded by Citizen Rob

Schuyler and I are heading back to Odessa, land of my misspent youth, to speak to a book club and visit the fam. Weirdly, this is actually the first book-related thing I've done back home. We'll see if anyone caught that part about "Odessalation" or "Slowdeatha".

A possible added bonus? I might just be playing my trombone in a public place for the first time since the Clinton administration, at the Summer Mummers in Midland on Friday night. We'll just have to see how tragic I sound. It might not be pretty. Well, I think I can pretty much guarantee "not pretty".

Entertaining? Well, in a NASCAR burning-wreckage-flying-into-the-stands sort of way, sure.

Alamo

It has been noted that my last two entries ("Truth can be a monster, too" and "A question of faith") are almost completely contradictory. They are. They are also both entirely accurate representations of my emotional state at the present time.

Funny how that works, the whole "people are complicated" thing.

The truth is that yeah, this is hard. And while I won't attempt to speak for Julie here, I personally feel like we're all failing Schuyler right now. Everyone who is supposed to be helping her is falling short. By issuing and endorsing this report and suggesting in the meeting that full integration for Schuyler is a very unlikely scenario, I feel like Schuyler's team at school is letting her down. I think I've made that clear.

But more importantly, in not understanding until this meeting exactly how much of a Potemkin village her mainstreaming experience has become and how far behind she has been allowed to fall, I have failed Schuyler. And not just a little, either, but in huge, glaring, unforgivable ways. I was supposed to know better, I was supposed to be watching for this, and I was supposed to be reaching her. I didn't.

And yet I still believe in her, even though I understand that perhaps I am setting myself, and probably her, up for sadness and disappointment. I'm still not accepting a future for her where she's unable to catch up to her classmates, even though I will love her with the same burning intensity and the same sense of pride if she doesn't. I might be wrong to fight like this, but she's so smart and so inquisitive and so insanely positive about the future that I'd feel like a completely different kind of failure if I suddenly started preaching acceptance and welcoming everyone to Holland.

On a good day, I vow to fight and say that her team is wrong about her. On a bad day, I understand that they're probably not wrong. And then I vow to fight anyway.

If you'd like to know how I feel right now, remember the Alamo, so to speak. Even if you're not a Texan, you probably know at least the bare essentials of the story of the Alamo. And so you understand that when the defenders of the Alamo entered the fort as the Mexican army arrived in San Antonio de Béxar, they weren't thinking "Oh crap, we're going to die in here, and the best we can hope for is to have a bunch of middle schools named after us all one day." They believed that help was coming, that all they had to do was hold on until the rest of the Texian army arrived.

But it is a point of pride here in the Republic that after the siege began and word came from outside that no reinforcements were coming, most of the soldiers stayed to fight, knowing that defeat was all but certain.

I feel a little like I'm standing in my own little fort, reading a report that says our reinforcements aren't coming. And I know I'm going to stay and fight, to the last bullet. But yeah, I now understand how this probably ends.

Like I said, that represents a not-so-good day.

Uninvited

A few weeks ago, I was invited to speak to an autism book club at a large Baptist church here in Plano.

Yeah, I know what you're thinking. I know because I thought the same thing. Well, two things come to mind, actually. The most immediate might just be that Schuyler isn't autistic. And that was the first thing that I pointed out to the organizer. But she assured me that it was fine, and that it was my experience with disability parenting that was important and the reason she wanted me to speak to her group.

I didn't mention the other thing, the fact that I'm not a Christian.

Well, no. I didn't mention it because while you may think whatever you like about my religious beliefs and the fact that I am not a Christian and am not raising my daughter to be one, the one thing you have to admit is true is that I have never pretended otherwise. I've never shied away from talking about my faith; my agnosticism has been an irritant to both my Christian and my non-believer friends alike.

My book surprised a lot of people (including me, honestly) because of the amount of ink I spilled discussing God. My Christian friends were disappointed that I didn't embrace Jesus at the end and instead described what was, at best, something of a truce with God. And my fellow heathens were puzzled by, well, the same thing. I may have been shaking my angry fists at the sky, but as my mother pointed out when she read it, at least I was still talking to God. We might be in need of couples counseling, but I hadn't dismissed the idea altogether.

Which is why I thought it sounded like a solid idea to talk to the Baptists. I haven't had very many positive dialogues with Christian groups like this in the past, but I'm not opposed to the idea. I assumed that the organizer of this book club had read the book and saw a deeper spiritual journey going on, and one that merited discussion with the faithful of her group.

Turns out, she hadn't read the book. Not yet.

As she made her way through the book, I could sense from her emails that she was troubled. I got several "I'm on page 154, and I've got some questions..." emails, which I tried to answer as best as I could. Particularly on the topic of my own beliefs, I said this:

For me as an agnostic, it is, in some ways, that lack of what others call "faith" that sustains me. It leaves open the possibility of something greater, something beyond my understanding, and it gives me hope that love is bigger than the cramped, mean world that we live in. And if I can't believe I know the nature or the origin of that love like the Christian believes, I also make room for it anyway. Which I suppose is its own kind of faith.
(...)
In the end, you know what's in your heart, and THAT'S the place where you keep your own faith. And while that sounds sort of lonely, I also find a great comfort in it.

Once we really began talking about it, her emails eventually turned into "I want to help you". I guess it's only because I'm a little slow that I didn't see the next thing coming.

I got uninvited to speak to her church's Autism Book Club.

I don't generally like to quote from private email, but since this event had already been publicized in advance (including by me) and my daughter's smiling face had already graced the club's website before being pulled without warning (before I was even officially uninvited), I feel like this one sentence of explanation is relevant. More to the point, it says a lot about, well, a lot.

"My book club is promoting Christianity as the answer to life's problems and that's what people are expecting when they walk in the door."

So there you go. Am I bitter? I don't like to think of myself as a bitter person, but yeah, I suppose I am, at least a little. Am I disappointed? Absolutely. But most of all, am I a little less likely to agree to a dialogue like this in the future? Does this feed my natural predisposition to distrust an agent of an organized Christian group? Yeah, it really does.

I have been asked on more than one occasion if I plan to teach Schuyler about Jesus, as if NOT doing so was somehow unAmerican. And I've been told that I am somehow limiting her future if I don't. Christians teach their kids what they believe, and while the best of them give them a choice, they still teach through their own biases. That's not even a bad thing. It's the nature of parenting, and it's part of how humans have built their tribes for thousands of years.

Well, for those questioners, I have good news, and I have bad news. The good news is that yes, we fully intend to teach Schuyler about Jesus Christ, among the other philosophers of history.

The bad news is that we intend to teach her about Christians, too. The good, the bad and the ugly. Because we're promoting information as the answer to life's problems.

Go Team Schuyler

Julie, Schuyler and I ("Team Schuyler", naturally) have decided to participate in the 2009 Childhood Apraxia Walk in Fort Worth, after following a link on organizer Anne Devlin's Facebook page. I realize that you may be struggling with the idea of me actually walking for three miles without there being some kind of automotive emergency or the actual breakdown of civilization. But this is a cause that goes right to the heart of us, because verbal apraxia is one of the manifestations of Schuyler's Bilateral Perisylvian Polymicrogyria.

It's the monster that keeps her from speaking.

Childhood Apraxia of Speech is a motor speech disorder. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. Apraxia of speech is sometimes called verbal apraxia, developmental apraxia of speech, or verbal dyspraxia.

The Childhood Apraxia of Speech Association of North America or CASANA's "mission is to strengthen the support systems in the lives of children with apraxia, so that each child has their best opportunity to develop speech". CASANA is the only charitable organization in the United States whose exclusive mission is to represent the needs and interests of children and families affected by apraxia.

We're hoping that if you live in the area, you'll join us for the 2009 Childhood Apraxia Walk in Fort Worth. It'll take place on November 15, 2009 at Trinity Park in Fort Worth. It will be a family-friendly walk with the option of a 1-mile or a 3-mile. If you register by October 26, you'll be guaranteed a Walk for Apraxia T-shirt in your size.

If you can't join us, we would appreciate your sponsorship. All proceeds from this event benefit CASANA's apraxia programs and research.

Seriously, we hope you'll be able to join us. You'll get to spend three miles with Schuyler (no more than ten or twenty feet of which will take place in a straight line, I suspect; she walks like a moth flies), and if my old, fat Robba the Hutt body fails me from the extreme trauma of walking three whole miles, you can point and laugh with a clear conscience and non-boomeranging karma.

TEAM SCHUYLER