January 27, 2014


Today at Support for Special Needs:
Special needs parents and their support professionals frequently talk about transitions. They are wildly important. It’s maybe the hardest part for a lot of our kids, and it’s the one that we know they can’t escape. The thing is, it’s the thing we can’t escape, either. Change is coming, as it always is. Sometimes stealthily as if on cat’s paws, but lately, more like a howling wind that drives everything before it.

January 20, 2014

Here Be Dragons

Today at Support for Special Needs:
For the parents of special needs kids who have developmental and communication impediments to independently moving through the world or reporting the troubling things that happen to them, the map of our world is crowded with monsters and terrors and fears. We’d gladly take on all the dragons and the krakens of the ancient world instead.

January 13, 2014

The Simple Story

Today, at Support for Special Needs:
The thing I find sometimes is how much there is to learn in the simplified version she gives back. She doesn't take something complicated and dumb it down. Often, she distills it, tries to break it down to its most elemental parts. When she gets those parts right, it feels like a tiny triumph, not just for her but also for me. Schuyler teaches me to communicate, even as she works hard to learn those skills for herself.

January 8, 2014

On Competency and Agency

One of the concepts you see referenced frequently in disability writing these days is to always presume competence. It's a straightforward enough principle, and in the world of disability, it goes back farther than you might think, back before most of us even think of disability advocacy being A Thing.

Think of the story of Helen Keller and Anne Sullivan. Sullivan's success in helping Keller develop the means to communicate with the world hinged on one simple thing: the presumption that Helen Keller's problem came from not having a practical and efficient way to communicate. Introducing her to the construction of language was the key. Given those tools, Helen Keller demonstrated that she had competence, the presumption of which hadn't occurred to many of her earlier teachers.

Presuming competence is the beginning, particularly where education is concerned. For teachers, the presumption of competence should be the Golden Rule, or the Prime Directive, or Square One. When we presume competence, we start off by assuming that a student has the intellectual capacity to participate in the world around them, and to be educated in a meaningful way. We assume that even the most physically and/or intellectually impaired student has needs and thoughts and experiences to communicate, and that even the most inscrutable actions and utterances represent forms of communication.

It can be difficult for teachers to embrace presumed competence because doing so places the responsibility for finding ways to reach those students squarely on those charged with educating them. Faced with large class loads and challenging students, it can be tempting for teachers to declare that some individuals simply cannot learn, and whose limited participation in the world is self-imposed. I've heard some very good teachers make those statements before. I've watched otherwise professional people decide that they've found that ceiling, and who are confident enough in their own teaching abilities that they believe further development can't happen.

The issue of presumed competence is something that every special needs parent runs into, and not rarely. It's tough, but it's important, maybe the most crucial piece of the very complicated equation. And it informs everything we do in our quest to correctly implement inclusive education. We don't set out to discover who is capable of learning or participating. We instead search for how that can be done, for every student. For every human. It all starts with the presumption of competence.

The tricky reality of presumed competence has come up over the last year in regards to Schuyler's school environment, but lately I've been thinking about this because of something that happened outside of the sphere of her education, actually.

The short version involves someone who was, I don't know if "offended" was the right word, exactly, but certainly troubled because when discussing Schuyler's possible future relationships, I referred to "that boy or that girl". (All hypothetical; as far as we can tell, Schuyler currently seems to be fixated on boys, albeit some punky ones.) The commenter asked, wouldn't supporting Schuyler if she did ultimately decide she wanted to date girls be another way of making her life more difficult? And in the subsequent discussion, the same commenter mentioned her concern that Schuyler's religious beliefs "mirror" those of her parents.

Leaving aside the twin bugbears of homophobia and religious intolerance that the discussion summons (being the Internet, it feels almost inevitable that they should make their appearance), the thing that bothered me the most was this idea of presumed competence, and of Schuyler's ability to take agency over things like her spirituality or who she wants to date. (As if her sexual orientation is something that she'll "choose" one day, but OH MY GOD, DON'T TOUCH THAT DOOR, WE'RE NOT GOING TO TALK ABOUT THAT HERE, EITHER!)

Schuyler is developmentally disabled. You can word that however you like, but it's her reality. It makes some things hard for her. It necessitates her taking more time in school, and it also requires her to take some complex concepts, and I think dating and religion qualify, and simplify them to some extent.

That doesn't change much, though. It is very clear that Schuyler knows what she believes. If her beliefs mirror ours (and that presumes that my wife and I believe the exact same things, which we do not), I'm not sure what that says. It certainly isn't because we tell her what to believe. We've had long discussions about what other members of our families believe, too, so she knows that her parents' beliefs are exceptions among both the Rummels and the Hudsons.

Furthermore, she attends school in one of the most conservative and bechurched cities in the country. I'm proud of Schuyler for declaring she doesn't believe in God, not because that's what we want to hear from her, but because she has the confidence to say so in defiance of what so many around her believe. If her parents influenced her, I suspect we did so chiefly in demonstrating to her that it's okay for her NOT to believe. That can be hard for a kid, particularly in such a predominately Christian society.

And if she changes her mind, which as a fourteen year-old she is almost certain to do at some point, I will be equally proud of her.

We will always try to guide Schuyler towards making good choices, but there are things we won't decide for her. We won't be the ones to tell her whether she's straight or not. She'll tell us. We won't be the ones to tell her what to wear or what movies and tv to watch or what music to listen to. She makes odd but great choices in that regard already. And we won't be the ones to lead her to her own great spiritual epiphanies, either. Those belong to her as well, along with all the other pieces of who she is that she's only just now beginning to discover.

Because Schuyler is competent. And every day, in ways both large and small, we watch her take more agency over her life.

January 6, 2014

One Resolution

Today at Support for Special Needs:
What I’m doing by not saying anything is a form of silent consent. I let a little piece of verbal poison go out into the world because I don’t want to have an awkward conversation with a stranger, or worse, with a friend or family member. I hold myself up as some kind of New & Improved Rob because I don’t say it anymore, but every time it goes past me unremarked upon, all I’m really doing is allowing someone else to say it for me. I feel like that might be a little worse.

January 2, 2014

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.