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.

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.

I will try.

At Support for Special Needs:

I’m not sure I’d call any of these "resolutions". But as we march off into 2014, I will try to be the father that Schuyler needs, more now than ever. I wasn’t ready to take on the life’s work of being a special needs father; I’m not sure anyone ever really is. But it is in the trying that I become a better father, and a more whole person.

Christmas Eve Eve

Today at Support for Special Needs:

I mentioned this last year, but one of the things I value the most about a site like this one is how we can come here and be weird. We can find others whose holidays are as atypical as our own, and other families whose traditions are as driven by circumstance as ours. We know the obstacles, and we know how much work has gone in and how much is still waiting in the future. And we understand, in ways we can't describe to typical families but don't need to describe to each other, how deeply satisfying the love we work for and nurture really can be. It's a hard love, and it's the very best love.

Best wishes for the very happiest of holidays
to you and to those you care about!

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!"

The Buccaneer Life

Today at Support for Special Needs:

The thought of striking out against that, of hoisting a flag of defiance and breaking down some of that restricting world’s walls? That’s some powerful fantasy material for those of us trying to navigate the sweet spot between this rock and that hard place. You don’t have to ask us twice if we would like a turn at the cannonade. Our flintlocks are already loaded.

The Hardest Forgiveness

Today at Support for Special Needs:

As parents, we’re probably almost certainly unprepared for the disabilities of our children, at least at first. We go into battle against monsters without so much as a BB gun in our hands. What we discover as we go is that sometimes, we don’t need weapons. We simply need different tools, such as patience, and tougher skins, and ingenuity. And most of all, we need to learn forgiveness, primarily for ourselves.

Injustice League

This week (sorry, I forgot to publish this on Monday) at Support for Special Needs:

What I truly want is for my friends to run out of hurts, to have no stories of our community being treated poorly. I want someone to say "I looked up #retard on Twitter, and nothing came up." I want to hear about the organ transplants being granted to patients with intellectual disabilities. I want to hear about how the kids on the bus were kind and the popular middle school girls gave the shy little nonverbal girl at the back of the room a makeover after school and taught her to dance to One Direction. I want to read about kids who are different writing poetry, not suicide notes. I want to read about the community that decided to invest in special education programs, and about the politicians who reach across that aisle to extend basic human rights to the disabled, rather than taking away their "entitlements".

The Uncertain Season

Schuyler decorated our tree this year. I can remember a time, roughly a week ago, when she was a small child who would have only reached the bottom branches. Two weeks ago, I believe she was a baby and would have been putting the ornaments in her mouth. Schuyler turns fourteen in a few weeks. Just typing that out felt weird, as if I'm lying to you. Well, of course I am. Little girls aren't fourteen. Babies aren't taller than their mothers.

It's been a strange week for Schuyler. She had an MRI a few days ago, but apparently she wiggled too much, despite her best efforts to hold still, so she has another one next week, under sedation. I'm not sure what her doctor is looking for, if anything. He may simply be looking for an updated picture of what's going on in there. So much of Schuyler's world feels uncertain. I guess it's always been that way.

Schuyler has begun taking her anti-seizure meds, starting at 1/6th of her eventual dosage. It's hard to say what effect, if any, they've had on her. In five weeks or so, she'll be on her full dose, and then look out. For now, she takes her brain pills willingly. It's hard to say whether her behavior is slightly more squirrelly than before because of her meds, or if she's just a girl on her Thanksgiving break, enjoying the world around her with a little extra gusto. I suspect the latter.

Schuyler's broken, beautiful brain will adjust and find its groove, and so will she. Schuyler is wildly interesting at this age, in ways that are kind of new. We talk about big things, like her unpredictable brain and how the planets do their thing and why she believes in monsters but not God.

The future feels more opaque than ever. At this time of year, however, that mystery seems to hold less menace and more of something that feels a little like hope.

The Brain Pill

Today at Support for Special Needs

I don't know what I was expecting, but Schuyler's brain, by virtue of its remarkable rewired structure, is a huge unknown to us all. And the potential side effects of this med spelled out on the info sheet were daunting; I half expected to see "werewolfism" listed.

Storm Warning

We've embarked down another path with Schuyler. It's not a path we were hoping to ever step foot upon, but then, we were perhaps entertaining unreasonably high hopes.

We received a call from the school yesterday morning, letting us know that Schuyler was in the nurse's office, complaining about a bad headache. When I went to pick her up, the nurse filled in some of the details, including the fact that Schuyler was saying and doing things that didn't actually make a lot of sense. Schuyler seemed tired and a little disoriented when I saw her, and after we got home, she remained... not herself. She complained about a headache for a while, localized on the right side. By three o'clock, she was fine, but even as the afternoon and early evening wore on, she was clearly exhausted. She went to bed early without protest.

So, yeah. Schuyler had a seizure at school. The usual indicators were there, laid out like familiar road signs.

This one seemed worse than before, however, and it manifested itself differently. I made a call to her neurologist, and when he heard the details, he asked that she be brought in immediately. His urgency got our attention.

The short version is that this new manifestation of Schuyler's seizures convinced her doctor that it was time to put Schuyler on seizure medications. Before, he didn't believe that they were serious enough to justify the issues that come with these meds, which are not usually very gentle on the brain. But now, he's concerned that stronger seizures could cause her brain, in its malformed state, to become "kindle" for the harder grand mal seizures that everyone is deeply committed to avoiding if at all possible.

One of the reasons I like this neurologist is that when he talks ABOUT Schuyler, he talks TO Schuyler. He asks her questions directly, only turning to me when she's having trouble expressing herself, and when he's got hard stuff to say, he doesn't sugarcoat it for her. The conversation, some of it dark, about what could happen if her seizures progress, and about what these meds could do to her, was had with Schuyler first and foremost. I like that. She deserves that.

As we talked on the way home, Schuyler suddenly made the connection between the bad and potentially dangerous grand mal seizures we're all trying to ward off and the heartbreaking seizure she witnessed this summer when one of her friends in Miracle League soccer was suddenly stricken in the middle of the field and had to be taken away, still unconscious, in an ambulance. This thought scared the shit out of her, and I don't remember the last time I saw that kind of fear in her eyes, or watched her cry like that. It was hard to watch, but at the same time, she deserved the truth, and the opportunity to take some level of ownership over this thing. She's scared, but she's taking it seriously, in a way that perhaps she hadn't before.

Meds will be good for her. Now that her seizures have reached this level, her brain will benefit from a little control, and will be able to heal and develop without having to fight so much. The risk/benefit balance has shifted, as we always suspected it would.

As we talked it all out in the car on the way home, Schuyler tried to put herself back together. I knew she was looking for answers to questions that she didn't even know how to ask. Big, scary boo questions.

"Look at me, Schuyler," I said. "Everything is going to be okay. I'm not going to let anything bad happen to you. I promise."

Well, I realize I shouldn't have promised her any such thing. Of course I know that. But I've made much bigger mistakes in than making such a promise to her. And I truly meant it in the moment. Hours later, after much contemplation, I still do.

Her World, Her Words

Today at Support for Special Needs:

But Schuyler also does a lot of free writing, creating text files on her iPad both for homework assignments and just her thoughts as they come to her. And it's here where the results of her increased freedom of expression and communication suddenly become clear. 

It's not perfect; her grammar is touch and go at best, but even then, when she fumbles the language, she doesn't mangle it so much as twist it into something different. Her language can be broken, but also beautiful and free. A little like Schuyler, come to think of it.

A Little Space

This morning, over at Support for Special Needs:

If Schuyler feels comfortable with even a few people in a gathering, she's a social butterfly, and an explosion of personality. But it's different when she's on her own, with no supports and no comfortable narrative to follow. For Schuyler, with communication being as fragile as it is for her, her social anxieties can feed on her in ways I probably can't imagine. She's not on the autism spectrum, nor am I to my knowledge, but in those settings, surrounded by people she doesn't really know but who come at her with a startling familiarity, a kind of sensory overload shuts her down.

What Inclusion Isn't

Today at Support for Special Needs:

Denying our kids the ability to work hard and perhaps even fail from time to time, instead just displaying them in front of an approving crowd and announcing "Look at this inclusive philosophy we've embraced!", that isn't inclusion. That's simply building a Potemkin village for the world to see and admire. It's a facade. It doesn't fool Schuyler, or any other kid whose potential is wasted because of fear of failure and a desire to do the nice thing, which is so easily confused with the right thing.

At the Center of her Own Narrative

Today at Support for Special Needs:

Putting Schuyler at the center of her own story isn't just polite. It's appropriate, and it's essential. She's thirteen now, and while I've certainly spoken on her behalf, or at least facilitated her communication, when she was younger, she's reaching an age where she will continue to advocate for herself more and more. I still speak for her far more often than I should, but sometimes I catch myself. Even as we endeavor to increase Schuyler's communication skills, we're working to provide her with the tools to express herself more comprehensively and training her to use those tools more efficiently and quickly. The goal is to enable her to hold her own, in any social or academic or even professional environment.

Monster Love

Today at Support for Special Needs:

I'm sure there are a great many reasons that Schuyler loves monsters so steadfastly. Monsters are outcasts, but they aren't powerless, even when they lose. Monsters are different, in ways that are usually instantly clear. Monsters make great friends, especially if the world feels overwhelming, or unfriendly, or even dangerous. Monsters sometimes want more than to eat your city. Sometimes they want love, or at least a place in the world all their own. All of the above, and probably more. I don't think Schuyler could even tell you why she loves them so much.

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

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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.

Pause

Today, at Support for Special Needs:

So sometimes you just have to stop. Your all-encompassing love sustains you through the hardest times and it's recharged by successes and moments of clarity, but love isn't enough, not always. It's the most rewarding life you can undertake, and you will grow in ways you can't have imagined at the beginning, but sometimes the experience of advocating for and taking care of a special needs child feels like stepping out into a maelstrom. Every so often you have to hit pause, or you will surely be swept away.

The Invisible Man

This morning, there's a new post at Support for Special Needs:

If you are writing about an issue that affects you as a disability parent, and if that issue doesn't relate to something that is specific to the experience of being a mother, I'm not going to ask you not to address your concerns to "special needs moms" only. But I am going to ask you why you're making that choice.

Is it because in your experience, mothers are the ones doing the heavy lifting? That makes sense; the statistics certainly back you up to some extent. But if that is in fact your perspective, I have to ask you, do you like it that way? And if you don't, how do you feel about a societal narrative that feeds this perception? More to the point, how do you feel about participating in the reenforcement and perpetration of this narrative?

A Human Advocacy

I just had a piece run this week, over at the Huffington Post:

When I examine all the interactions in my own life, it's with my daughter that I find myself developing the closest, most authentic, most real relationship. And it's one built not so much on words, which can be difficult for her, but largely on shared experience. It's important to me that much of that experience takes place in her world, sometimes internal and sometimes very much not, and on her terms. Knowing Schuyler means loving her without expectations of adherence to a societal narrative.

Authentic human relationships. Friendships without pity and lacking power imbalance. Unconditional love, not the kind you might feel for a beloved, well-tended pet, but the kind of love built on mutual fascination. The kind that comes from real listening. This is the path to real advocacy. This is the real work, the kind where changing the world mostly involves changing ourselves.

This piece was aimed primarily at the general public, rather than the disability community. (That choir hears my preachiness plenty enough already.) If it feels a little like the things I was writing earlier this summer, it's probably because this piece has been in HuffPo's queue for a few months. I'm really glad it finally ran, and I'm thankful to the folks there for publishing it.