Just a Word: From the Mouths of our Public Servants Edition

I didn't want to write about this today. I didn't want to write about it at all, actually, but certainly not today. I've got another post coming up tomorrow that I most certainly do not want parked next to this delightful topic. And honestly, I'm tired of talking about it, this thing that doesn't seem to ever change, or ever get better.

But then, I'm not the person who thought it would be funny to use kids like mine as the punchline to a horrible joke, all in service of scoring political points and mocking the President of the United States.

Allegheny, PA County GOP chair Jim Roddey, at the election night party for state Rep. Randy Vulakovich, R-Shaler:

"There was a disappointment tonight. I was very embarrassed. I was in this parking lot and there was a man looking for a space to park, and I found a space for him. And I felt badly -- he looked like he was sort of in distress. And I said, 'Sir, here's a place.' And he said, 'That's a handicapped space.' I said, 'Oh I'm so sorry, I saw that Obama sticker and I thought you were mentally retarded."

Well. There you go.

(I'll no doubt be able to add an update later, with a weaselly statement from Mr. Roddey's spokesperson expressing regret or possibly outrage that his words were taken out of context by the liberal media, and how he does love the little retards of the world so very much. I'll be sure to share it when it comes.)

This isn't about politics; it's just as reprehensible when the sentiment comes out of the mouths of people whose politics align more closely with my own. And this time, it isn't about a slip of the tongue, a casual careless remark, or a moment of poor judgment.

This was a joke. A premeditated joke, one that Jim Roddey planned to make. For all I know, it was written down on a little blue notecard for him. It's even possible that it was written for him, by one of his staff. Jim Roddey stood up, he took the microphone, and he very deliberately and unhesitatingly made a joke, one that I like to think that just about any decent human being would find repulsive.

But that's perhaps the worst part.

From the article: "The crowd hollered and clapped, and then Roddey went into the the usual thanks at political events for grassroots supporters of the winning candidate."

Not one person stood up and called him out on it. Not one person felt compelled to be a voice for basic humanity, for a bare minimal level of human decency. Gathered in a mob, the crowd roared its approval. It cheered and it laughed, and it demonstrated once again that those of us who love and advocate for friends and family with developmental disabilities have a lot of work to do.

And all our work? It might just be for nothing.

I wonder if Jim Roddey and his audience would have laughed if my child had been standing there in front of them. Or Sarah Palin's.

Or yours.

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INEVITABLE UPDATE, 8/8: Jim Roddey has apologized for his joke.

"I have a long record of supporting people with disabilities and should have remembered that before I spoke. My remarks were inappropriate and I apologize."

See? It's not that he doesn't care about people with developmental disabilities. It's simply that he forgot that he cares. Silly!

Apparently the members of the Allegheny County GOP forgot not to laugh, too.

Jim Roddey, Pennsylvania’s Allegheny County GOP Chair and swell guy.

info@rcac.net  Telephone: 412-458-0068
(Mr. Roddey's phone: 412-512-6747)
The Republican Committee of Allegheny County
100 Fleet Street, Suite 205
Pittsburgh, PA 15220

Letting go. Just a little.

I wrote about the challenge of trying to grant Schuyler a measure of independence over at Support for Special Needs this morning. I'm not all that good at letting go, but I do try.

Keep an eye out here for a special announcement in a few days, if all goes well. If you think you know what I'm going to tell you, the only thing I think I can say for sure is that you're wrong. I believe this might just be a near-universal surprise. And a complicated one at that.

A Time Travel Fantasy

There's a new post up at Support for Special Needs, in recognition of the nine year anniversary of Schuyler's polymicrogyria diagnosis. It has been an indescribable nine years, and a tremendous contrast between fear and reality.

First

My latest post at Support for Special Needs addresses People First Language. I've written about this before, and I'm not sure my feelings have changed about it very much, but a discussion I had online recently made me think it might be time to revisit the topic. So here you go.

In other news, it is entirely possible that someone in a managerial situation in the city of Chicago might be saying to themselves, "Say, I'd really like to hire that Rob fellow to come work for me in my Factory of Hopes and Dreams, if only I could meet him face to face and determine if I like the cut of his jib."

Well, good news. Both me and my jib will be visiting next week. Let's make it happen.

An Intervention

There's a new post up at Support for Special Needs. You will be perhaps ever so slightly unsurprised to hear that it involves the legal battle between the developers of the speech language app Speak for Yourself and the Prentke Romich Company.

Short version: We're getting involved, yo.

Running on Empty

On Facebook the other day, I made a statement in regards to the rapper 50 Cent and his ugly Tweets in which he used autism and special education as cheap insults.

I said:

"I love a good outrage as much as anyone, but honestly? If I were required by law to give two shits about what 50 Cent thinks, I'd have to borrow them both."

A few people took me to task for that, and they weren't wrong to do so. While I haven't exactly changed my position on this concerning the amount of outrage I have been able to muster about 50 Cent and his opinion about anything at all, I do try to at least address my lack of outrage and what that might mean about me at the moment.

You can go read about it on today's Support for Special Needs.

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 Grownups

There's a new post up at Support for Special Needs, following my attendance at the 2012 AAC-RERC State of the Science Conference in Baltimore last week. Not a recap or anything that fancy, just an observation on one particular aspect of the conference.

One thing I didn't mention in my piece was the interesting observation that a number of representatives from the big assistive technology device makers were in attendance, which I appreciated very much. The discussions of the iPad and the consumer electronics in AAC tech couldn't have been a lot of fun for them. I was saddened and a little disappointed that PRC wasn't among the companies in attendance. I would have been interested in their input, and I'm going to say with confidence that they could have benefitted greatly from hearing what people had to say about the topic.

I don't feel like there's nearly enough active listening going on in the assisted speech industry at the moment, which is both ironic and a very great pity.

Extraordinary Measures

There's a new post up at Support for Special Needs. I'm actually not entirely sure what to say to describe this one. I quote an old torch song, "The greatest thing you'll ever learn is just to love and be loved in return." I think that quote might just sum it up nicely.

I'm still looking for a job in Chicago, by the way. You know, in case you were thinking of offering me one but didn't want to get lost in the crush of offers coming my way. Crush away. Seriously. Don't make me beg.

A Day Without Lawyers

There's a new post over at Support for Special Needs. More talk about the legal song and dance between the developers of Speak for Yourself and the Prentke Romich Company. The whole thing has grown exactly as frustrating and ridiculous as you might imagine. Honestly, I'd write more, but the topic is exhausting.

Beautiful Freak

You're such a beautiful freak

I wish there were more just like you

You're not like all of the others

Schuyler has always loved music, which is no surprise given that she's been surrounded by it from day one, and I've always sung to her. In recent years, we've sung to each other, in those moments we share alone. Schuyler and I spend a great deal of time together, particularly once she's out of school. She accompanies me to work most days, and in the long car ride, we sing, a lot.

The other day, we were singing an Eels song, which is hardly surprising to anyone who knows us. The music of Mark Oliver Everett has always been ours, Schuyler's and mine together, ever since she was a baby and I would sing My Beloved Monster and Me to her. It was fitting; she was my strange little monster, even before I knew why, and we really did go everywhere together, as we still do today. As she grew older, particularly in the dark days after her diagnosis, I would sing her to sleep with The Stars Shine in the Sky Tonight ("It's not where you're coming from / It's where you're going to / And I just wanna go with you…"), thinking of a future where she might have to go forward without me, or me without her.

But this week, it was a simpler, happier song, Beautiful Freak. Every time I sing it to her and point to her, she laughs, and the way she sings it back to me, in her strange tongue that so few in the world are privileged to hear and even fewer to understand, it makes my heart soar. We have so many nicknames for each other (her current favorite for me is "Daddy-O", which I adore beyond description), and few of them are gentle. Dummy. Butthead. Buggin. Space Monkey. Freak.

And that is why I love you

Beautiful freak, beautiful freak

That is why I love you

Beautiful freak, beautiful freak

"Daddy," she asks, "Am I a freak?"

I look at her face carefully, searching for anxiety. Is this a word she's heard before, from the lips of mean kids? But no, there's nothing there. She's smiling. She just wants to talk.

I want to say no, but it doesn't feel like the right answer.

"We're all freaks," I say. "Everyone in the world feels like a freak sometimes."

"Is it bad?" she asks.

"It's not bad," I say. "Sometimes people use that word to be mean, but it's only mean if you take it that way. Everyone is different, and you're more different than most, you know? That's why you're my beautiful freak."

Some people think you have a problem

But that problem lies only with them

Just 'cause you are not like the others

I've always maintained that the only things I could really promise Schuyler are love and the truth. And so I've never pretended that she's not different, or that her difference wouldn't be difficult to bear sometimes.

Schuyler knows she's different. And when we sing, when she's a beautiful freak and she's loved for it, she's okay with it. It's a hard life for her, and it's not going to necessarily get that much easier, but it's hers and she's making her peace with it.

And I think it's pretty clear that Schuyler has figured something out about her father, something that the song reaffirms but which she's probably known all along, longer than I've been aware, even.

She knows that my love for her runs even deeper because she's different. That her difference fuels my affection in a way that is impossible to understand or define.

Too good for this world

But I hope you will stay

And I'll be here to see

That you don't fade away

When Schuyler and I move through the world together, we do so in a way that is different from her other relationships. It's different even than those moments when anyone else is around. Schuyler gives her attention to others in a way that can be intense; I can only assume that there are a few restraining orders in her future. But when it's just the two of us, when no one else is there, we occupy a space that is ours and ours alone. Schuyler holds my hand when we drive. She claims one shoulder for her own and just holds on. We share food and we sing songs and we say snotty things about other drivers. We find vending machines and eat bad snacks. We count airplanes overhead, every day.

I frequently write about Schuyler as a child with a disability because that's the thing that we struggle with the most, and the thing that speaks to a larger community the most clearly. But it's important to understand that the experience isn't hard because of her. It's hard because of the world. It's hard because society requires her to fit, in a way that she doesn't do easily, and while I would love to change the world, that's not ever going to happen, not to the extent that it should.

I can't change THE world, but I can try to change hers, to build a space around her where she can exist on her own terms, at least enough to regroup and recharge before she goes back into the fray, back into a land of passing, of trying to fit, and of trying to hold her head up while a dumb world expects her to apologize for being a beautiful freak. I can try, for as long as it is within my power, to see that she doesn't fade away.

You're such a beautiful freak

I bet you are flying inside

Dart down and then go for cover

Schuyler needs to be enabled. She needs to be given tools to communicate, options for freedom, opportunities to love and be loved. Schuyler could be an amazing big sister to someone, and she is easily the very best friend that anyone could have if only they would ask her to be. Given the right environment, Schuyler will thrive. She will grow wings and she will fly away, far from the doubters and far from these who would limit her and diminish her value and her humanity with their lack of vision.

And far from me one day. I hope that she can, even as I hope she never does. For like every other dad since the beginning, it is the fate of this father's heart to be broken, in ways I could never see coming, and could never, even in my most selfish moments, ever deny my beloved monster.

And know that I

I love you

Beautiful freak, beautiful freak

The Future is its Own Kind of Monster

My latest post at Support for Special Needs discusses how the end of the school year means facing the future, and how for those of us with kids with disabilities, looking into that future can be pretty disconcerting.

In other news, Schuyler finally got her year-long dream over the weekend, which was to color her hair blue. Except it didn't turn out blue, not even close. She was disappointed (How many little girls dream of having hair that is gunmetal grey?), but it grew on her. I knew we were going to be okay when she looked at herself in the mirror, paused, and then said "I look evil!"

Speaking for Herself

It's Monday, meaning there's a new post at Support for Special Needs. Today I discuss Schuyler's own self-advocacy where her communications are concerned, making real decisions regarding how she chooses to make herself heard.

But I Was Looking at the Permanent Stars (Memorial Day 2012)

Bugles sang, saddening the evening air,
And bugles answered, sorrowful to hear.

Voices of boys were by the river-side.
Sleep mothered them; and left the twilight sad.
The shadow of the morrow weighed on men.

Voices of old despondency resigned,
Bowed by the shadow of the morrow, slept.

( ) dying tone
Of receding voices that will not return.
The wailing of the high far-travelling shells
And the deep cursing of the provoking ( )

The monstrous anger of our taciturn guns.
The majesty of the insults of their mouths.

-- Wilfred Owen

Fail

There's a new post at Support for Special Needs. It's not long, but it was hard to write.

I hope I don't have to write another one like this for a long, long time.

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.

An Undiscovered Country

In the past year or so, Schuyler has made a discovery. It's one I've always known she would make, and always anticipated with a heavy heart. Inevitable, perhaps, for any person with an essentially good heart and a love for the world that it has neither earned nor returned.

Schuyler is learning how to be sad.

She learned in middle school that being surrounded by people doesn't mean you can't be lonely. She learned that people will look at a kid like her and make assumptions that are extremely unkind, assumptions that she can't easily dispel. She learned that her brain can betray her, can leave her confused and dispirited, and that as she grows older, that betrayal only grows worse. The last few times that she's suffered partial complex seizures have left her crying. She had one last night in the middle of dinner with friends that left her sobbing, for no reason she could identify. "I can't stop crying," she kept saying to me, and the confusion in her voice was, for me, perhaps the most heartbreaking of the many bad things about her fucking monster.

Schuyler is coming to realizations about this grand, rough world that she probably already knew, but in the last year or so, she's taken those lessons to heart.

Today I accompanied Schuyler to her middle school band's annual trip to a local water park. I was attending as a parent chaperone, doing things like checking names as the kids got on the bus and handing out wristbands and such, but when the rest of the chaperones' jobs were done and the kids were in the park, my real duty began. The band director, a good and decent person who really does real damage to the crappy reputation of conductors everywhere (I kid, I kid...), recognizes our daughter's challenges, and she works harder than we have any right to expect in order to make Schuyler's band experience a good one. She put me on the chaperone list, I believe, so that I could keep an eye on Schuyler.

Schuyler had a good start to the day as she and a friend gravitated to each other immediately. But I knew we might be in trouble when I saw the girl later with someone else. When Schuyler found me, she was frowning.

"She found another friend," she said. I tried to explain that just because her friend was playing with someone else didn't mean anything bad, and that sometimes people just change up their buddies from time to time, but she wasn't convinced. I honestly had no idea what had happened, but I know Schuyler. She's an amazing person, but she can smother her friends. It's always been a problem and it will continue to be one, until she finds her person, the one who only wants more of her, not less. And that girl or boy will be her soulmate and her forever person, and that will be that.

We sat down for lunch, and were having a pretty good time. Schuyler was fighting a losing battle with a hot dog that she had inadvertently smothered in a toxic strata of mustard, but she was soldiering on. And that's when we heard it, from the table next to ours. A girl, laughing and yelling at her friend.

"You are a retard!"

Schuyler stopped. Her face froze, and she turned to look at the kids. They were oblivious; I don't even think they were from her school. They carried on, not knowing what they had just done, which I suppose is true of the majority of people who casually throw that word around. But I knew. I could see it on Schuyler's face. She turned back to her lunch, her face now a careful mask.

"Are you okay?" I asked. There was no need to acknowledge what had been said.

"I'm not a retard," she said quietly. "That's a mean word."

I tried to explain that the girl wasn't talking about her at all, but Schuyler was absolutely convinced that she was. Beyond that, I explained, not for the first or I suspect the last time, that people who use that word don't have the first clue about who Schuyler is or what she's capable of. That word has nothing to do with her, I said, and people who use it only make themselves smaller, not her. Schuyler sat quietly, not even looking at me when I snapped a photo of her, trying to cheer her up. She listened, but she didn't hear. She'd already heard what she needed to, and not from me, but from one of her peers.

Finally she gave me a lingering hug and said something that I can tell you for a fact that she has never said to me in her young life, yet something that I've said a hundred times to just about any person who has ever loved me, ever. I suppose it was just a matter of time.

"I want to go walk around by myself," she said. "Okay?"

"Okay," I said. And she did, for almost an hour. She was never alone, because I followed her from a distance, watching. Maybe that was the wrong thing to do, but it didn't feel wrong. I know it wasn't the wrong thing to do. Sometimes the hardest part of being a father is when there's absolutely nothing I can do to make it better. Just follow, and let her sadness resonate with my own.

She walked with her hood pulled up, her hands in her pockets, her face cast down, moving sadly through the park and the world like a ghost.

"...her little heart it could explode."

The Anxious Season

There is a new post up at Support for Special Needs. Schuyler's IEP meeting is later today, so I decided to share my thoughts on that whole process.

The big news today is that for the first time, Schuyler will be attending that meeting. This has been something we've always wanted her to do, as soon as she was ready. She's going to share her decision with the committee as to what assistive tech solution she has chosen for next year. We've given that decision over to her entirely, and she has been extremely mature and contemplative in making that choice.

I couldn't be more proud of her.

Touch

There's a new post up at Support for Special Needs. Schuyler had a problem at school, one without any easy answers. Well, that's hardly new.

The Fated Family

There's a new entry at Support for Special Needs about how the process of building families is perhaps different for parents of kids with special needs.

A few weeks ago, I wrote about a new AAC app, Speak for Yourself, which is the subject of a lawsuit by the Prentke Romich Company. Well, the developers were kind enough to let me see and evaluate the app with Schuyler. I'll be writing something this week on that very subject. Cool, a teaser…

The Island

Once again, it's time for a new post over at Support for Special Needs. I wanted to offer something up to the parents and families out there dealing with external monsters on top of the personal ones that nip at their heels without rest. I've felt badly for special needs parents of late; it seems like the world has been unusually cruel to a lot of them. And it reminded me of something I wrote in my book, a fantasy about escaping to an island.

It was an entirely wrong-headed fantasy, and I knew it back then. Even today, however, it holds some of the same appeal to me as it did years ago when I'd stand on the beach in Connecticut with Schuyler and wish that the future that I was afraid would bedevil her was on the other side of the sea. If it was just us, protected from that future and the grand rough world, I thought, we would make it just fine.

As it turns out, we did anyway.

Fat Talk

It began, like so many silly things do here in the heady days of The Future, with a comment I made on Facebook.

"I lost ten pounds in the week since I was at the doctor. No joke. Perhaps I should let this infection linger a little longer."

The short version of backstory is that for the past week and a half, I have been sick. REALLY sick, actually, with a one-two punch of what the doctor wanted to call pneumonia but which I weaseled her down to bronchitis (because I am so very very charming, no doubt) and a wicked sinus infection. The bronchitis was under control fairly quickly, but the sinus infection, my very first, lingered painfully and disgustingly. I'm going to skip the details, but suffice to say that due to a near-constant nausea, I had very little to eat that week. When I returned to the doctor for new, hopefully not-pretend antibiotics, the nurse weighed me, and yep. I had lost exactly ten pounds in the course of a week.

So I posted that fun little status update. There are two parts to it, which I believe can be identified as a) the "silver lining" part, and b) the "obviously a joke" part.

Well, maybe not entirely obviously. Someone left what I felt was a passive-aggressive response, linking (without comment) to "How To Spot Fat Talk So You Can Stop It". When I called her on it, she took the "oh, I'm just saying…" approach, and that pushed my button, I guess. Don't walk in the room, release a flatus and then pretend it wasn't you. She said she found "fat talk" to be toxic, and I guess it didn't matter that I was talking about myself, and that no, I wasn't actually advocating the use of illness for radical weight loss.

Because here's the thing: I didn't make a choice. Getting a nasty infection wasn't part of my plan. I didn't stop taking my antibiotics or stick Cheetos up my nose. I was sick, it sucked a very great deal, and I didn't eat much. I didn't really understand how much weight I was losing because I wasn't changing out of my pajamas much. I was a delightful treat; if you had knocked on my door this week, when I answered the door, you wouldn't have thought "Sexy MAN!" You might have phoned up the Centers for Disease Control after you finished spraying Lysol in your face.

I'm going to be blunt. She seemed like a perfectly nice person, but I found her point to be extremely unconvincing, as was another comment by someone else later. Because, again, it was a joke, and again, it wasn't a joke at someone else's expense. You can't just show up on someone else's Facebook page and take their self-referencing, self-deprecating humor and sanctimoniously apply it to yourself. Well, you can, but I'm not sure why you would want to.

Anyway, the whole thing got a little out of hand. (Trust me, you want to read that. I'll wait.)

Fun Internet kookery aside, weight is a tricky issue to discuss publicly. I know that in the "fat-o-sphere" (I really did just type that), there are a lot of specific rules for how these discussions are supposed to take place, with lots of trigger warnings and the like. I know none of these rules, and I'm not sure I care to learn them. Not because I'm a dick (or not JUST because, if you prefer), but because the weight issues I'm discussing are my own. I'm not sure I need a set of guidelines to talk about me.

I've always had issues with weight, ever since I was a kid. And while I've never been morbidly obese, I can't remember the last time I was exactly fit, either. I'm going to use some actual numbers today, since I'm sitting at the low end at the moment. For scale, I am six foot, two inches tall and possess all my limbs and parts in the usual proportions.

At my worst, during what might be termed my "County Fair" days, I weighed 280 pounds. No joke. I remember that day, when I stepped on the scale and saw that number. I was young, too, maybe twenty-six or so. I spent the prime of my youth eating and (more to the point) drinking as if an alien invasion were imminent. All I got for my troubles was about ten years of photos I will never show anyone, and well, yeah, perhaps a little type 2 diabetes. (That was a joke, too. I come from a long line of genetic diabetics, although I certainly tossed enough gasoline on the fire.)

By the time I met Julie, I was way down from that, maybe 250 pounds. I lost a bunch of weight when I was diagnosed with The Beedies at 37, but then I published a book and ate and drank a lot and gained pretty much all of it back. The last time I really remember weighing myself was about a year ago, and I was at an unpleasant 245.

Now here's where it gets fun. Last week, when I went to the doctor, I was surprised to find that I weighed 223 pounds. I knew I had lost some weight; my clothes told me that. But twenty pounds, for nothing? I was pleased.

When I went back to the doctor exactly one week later? 213 pounds. That's not all that far from my doctor's target weight for me. The last time I weighed this little, I think I was still receiving lunch money.

For those of you who also have had weight issues during your life, however, you understand a kind of universal truth. Numbers don't always mean a whole lot to a fat person. Not good ones, anyway. And when I say "fat person", I mean that in the same way that someone who has been clean and sober for twenty years still self-identifies as an alcoholic. Sometimes you can tell the formerly fat person by the clothes they wear, at least a size too large, as if they don't trust what their own senses tell them in the dressing room. I imagine sometimes you can identify the formerly fat in the ranks of the extremely fit and healthy. They watch those numbers closely, perhaps a little grimly. Their own silent exercise mantra might be "Never again."

You can be the obscenely rich CEO of a major corporation, but you can still probably list the names of the bullies who made fun of you when you were a little fat kid. You can have the most beautiful and successful man or woman on your arm at an elegant dinner party, but if you close your eyes, you can clearly see the faces of the pretty girl or the handsome boy who turned you down in school with a barely-concealed smirk on their face, the universal "As if!" sneer.

And if you were a fat kid who discovered early on that you could make people laugh at the jokes you made instead of the shape of your body, then you made sure to hone those skills. You learned to make jokes, and not just innocent ones, either. You learned that the easiest way to deflate a bully was to get the crowd to laugh at him instead, so you developed a sense of humor with an edge, and you never forgot how to use it. And you never ever forgot that if you really wanted to be funny and to keep yourself in the good graces of others, you saved the most biting jokes for yourself.

And when someone shows up on your Facebook page to tell you to use nice words when you talk about weight issues, even when you're talking about yourself, you push back. And you should. Because no matter what your size now, you're a fat person. And you're not about to let someone who (in your mind) apparently hasn't figured out How Things Work take away your own best defenses simply because when they see "fat talk", they take it to heart, as if every conversation about fat people is a conversation about them. As if the warm embrace of "The Fat-o-sphere" is the only place one can find relief, with words of acceptance and maybe some denial, but never anything harsh or sad.

Some of us, and I'm going to say that includes a lot of you reading right now, some of us learned a different way. And whether we hide our fat person past or joke about it or sweat and bleed it away at the gym, we at the very least own our fat person in our own way. If you're a fat person and you try to change that, you might be a well-intentioned person, but you really ought to know better.

Yours truly at 213. Don't get too accustomed to it...

Andy Richter Saddens the Universe

When we talk about the dehumanization of people with disabilities, there's a general dismay that receives a certain amount of lip service, but there's a sad reality, too. Not every slur against every disability receives the same amount of outrage. Not every lobby inspires the same level of hesitation from those who might be considering making a joke in a film or on television or wherever. Some of our tribes are very, very small. The number of fists we can shake at the sky is limited.

Which is probably why comedian and Conan co-host Andy Richter didn't hesitate to make this joke earlier tonight:

@Andy_Richter
RE: the-baseball-cap-that-fits-over-the-tops-of-the-ears trend: is microcephaly now considered sexy?

There are a few reasons this bothers me, some of them very personal. But let's get this out of the way first: Andy Richter is a smart and funny guy. And that's part of the problem here. When someone like Tracy Morgan makes some joke about "retarded people", we are outraged for sure. But on some level, we might also look at both the joke and the comedian and say, "Well, honestly, that's pretty dumb."

But Richter has been one of the more intelligent and on-the-fly funny personalities on television for a long time. And there's something about this joke that seems especially cruel. The joke doesn't work (inasmuch as it works at all) unless you know about microcephaly. The joke is that persons with microcephaly have small heads. Get it? And to make this joke, Andy Richter had to be completely aware of what microcephaly is.

Of all the problems with this joke, awareness isn't one of them.

A few harsh points, then. When Richter asks if microcephaly is now considered sexy, he's kidding. If he wasn't kidding, however, the answer would be mostly no. It's not sexy because the word "sexy" is probably only really appropriate when applied to adults. Persons born with more pronounced microcephaly don't generally make it very far into adulthood. Many of them die young, buried by their heartsick parents.

I had the opportunity to meet with a great many of these parents and their amazing children a few summers ago at what is now called the Microcephaly, Lissencephaly and Polymicrogyria Convention, a huge labor of love presented by the Foundation for Children with Microcephaly. I got to know some of the most amazing people in the world at that conference; it literally changed my life.

And I learned to appreciate just how closely their world intersected with mine. At this conference, kids were examined by some of the top experts in the world, including Dr. William Dobyns, the doctor who diagnosed Schuyler's polymicrogyria. (The first thing he did when he met Schuyler in 2005 was measure her head to rule out microcephaly.) At the closing lecture, Dr. Dobyns surprised me by reporting that aside from microcephaly, the most common diagnosis he had given out at the conference was polymicrogyria.

Polymicrogyria. Microcephally. Lissencephaly. Not many advocacy groups for these monsters. No telethons or puzzle pieces or a month for awareness. No inspiring actors in popular tv shows. No movies about a Very Special Child. And no hesitation by a popular and successful tv comedian to make a joke about them, a joke that his clever fans might have to google to even understand and laugh about.

If Schuyler's disability were one that showed on her face, if she were shaped differently because of the little monster in her brain, then perhaps a famous comedian could make a joke about her, too. Perhaps I should feel lucky. Lucky that Schuyler can hide in plain sight, lucky that her appearance doesn't bring out the worst in others, lucky that she might just get to grow up without going to a movie or watching tv and seeing herself as the punchline to a joke.

But I don't feel lucky. I feel sad, mostly for the friends I made at that conference three years ago. Some of those friends have probably buried their children by now. Those who haven't probably don't have the time or the energy to be outraged at Andy Richter's monstrous, stupid joke. I'm sad for all their beautiful children, and for all the kids out there whose disability marks them in a way that attracts pointing jackass fingers. I'm sad for all the ones who can't understand the jokes that are being made, or are even aware that they are being mocked at all. That makes it worse in my eyes, not better.

Once again, I feel like the world really isn't ready to make space for our kids or our families. There's a table, and that table is set for the empowered, and it's even set for the disenfranchised.

But only if you're human. Only if you're better than a punchline.

---

UPDATE, 11:30am

About an hour ago, Andy Richter removed the offending tweet. It it's place, he made the following statement:

I offended a lot of people yesterday with a tweet using the word "microcephaly". It was not my intention to mock disability. I normally am not bothered by offending people, but in this case, I am. I make jokes, and this was one I shouldn't have made. I apologize for my insensitivity in this instance.

I can't speak for anyone else, but I would like to thank Andy Richter for this gesture. We all have a lot of growing to do, myself as much as anyone.

Anatomy of a Storm

It's Monday, which means I'm about to make excuses for not posting anything since LAST Monday. This week's excuse is a little better than usual; I got a massive sinus infection at the same time that my tenacious lung funk made its Big Push to end the war. The doctor said I probably have pneumonia and wanted me to go to the hospital, but I managed to talk my way out of that fun idea. We'll see how smart that plan turns out to be.

Anyway, there's a new post up at Support for Special Needs. And while I like to think you're actually reading all the posts I write over there ("Another click? Screw this, my hand hurts…"), I hope you'll make a special effort to go see this one. Not because it's unusually wonderful or important, but because it feels personal and a little raw for me. I guess I just want you to read this one a little more than usual.

Little Monster

Happy Monday, and welcome to April! (I'm not sure why I just welcomed you to April. Is it supposed to be any better than March?) There's a new post up at Support for Special Needs. It's a topic I've touched on before around here, but in the aftermath of the whole discussion in other online venues of whether or not it is appropriate to "hate" a child's disability, I thought it would be a good time to revisit the whole "monster" metaphor, particular with a different crowd over there. There are always new people eager to have something at which to shake their angry little fists, after all.

---

In a brief followup to last week's post, we've gotten our hands on a copy of the Speak4Yourself app that has cause such a kerfluffle in the AAC world. We've all been playing with it over the weekend, and once we've had a chance to fairly evaluate it, I will definitely do a write up.

My initial observations? It is really robust, with a bit of a learning curve. At the same time, it is much less similar to MinSpeak than I thought it would be, and I'm less convinced than before that the lawsuit by Semantic Compaction and PRC is going to gain very much traction. There are a few features I'd like to see (although in all fairness, I probably just haven't found them yet), and some (such as the seamless interaction with texting apps) that I think are brilliant.

So more soon on that.

art by Edith Meyer, 2007

The Iceman Cometh, with his Legal Team

Happy Monday, friends.

Today's post at Support for Special Needs touches on the uneasy state of affairs between AAC device makers and app developers trying to utilize tech advances in consumer electronics to further their craft.

Things have taken a turn for the ugly. Well, uglier, anyway.

(Bonus: Schuyler gave me a quote, typed directly into the doc on the computer. She did a great job of saying exactly what she wanted to say, about how she feels about her current device and what she wants to do in the future. I'm really proud of her.)

---

Also, the ever-cool Jen Lee Reeves, with whom I spoke on a panel at SxSW, is giving away a signed copy of my book. Go check out her post, especially the parts where she nice stuff about me. Because you know me. I like that.

Inscrutable World

I know, I've been quiet all week. I think I picked up a bad case of Hipster Pox at SxSW, so I've spent the week mostly coughing. I'm getting really good at it.

Anyway, there's a new post at Support for Special Needs. It's sort of about soccer, but not really.

Vague enough for you? My work here is done.

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.

Spread it. End it. That's all.

March 7th is the annual "Spread the Word to End the Word" observance day. The word, of course, is "retard", and if you're still using it, tomorrow would be an excellent day to at least think about why it is you've been sticking to your retard guns, so to speak.

You'll note that I don't say "you should stop using that word". That's because I can't tell you whether or not you should stop. I can't choose your vocabulary for you any more than anyone else can, and I don't think I have the right to try.

But I hope you'll think about it.

To that end, I hope you'll take a moment to go read the thing I wrote about this topic last May, called "Just a word". And as usual, someone else says it better than I do:

Schuyler's Dragon

I just found out that someone bought the rights to publish Schuyler's Monster in Chinese.

How cool is that?

Schuyler has declared it "super cool". So there you go.

Puppies and Cookies are Swell

It's Monday, so it's time for a new post over at Support for Special Needs. This one should cause considerably less gnashing of teeth and scented hankies lifted to worried brows than last Monday. You can decide for yourself if that's a good thing. I think it probably is.

Also, a reminder to SXSW attendees. The panel I'm participating in will take place a week from today. Well-wishers and hecklers are encouraged to come say hi. (If you're a heckler, stick to bugging me. Jen and Kate won't stand for your shenanigans OR your tomfoolery.)

Schuyler and Maxie, in 2007

I'll be there. Will you?

For more information...

No Offense

Here's a donut if you didn't get one.

Happy Monday, friends. I hope you got some donuts.

If it's Monday, it must be time for another blog post over at Support for Special Needs. This might be one I ever so slightly regret posting in the very near future, which of course means you should go over and read it right now.

I keep meaning to mention something. If you want to comment on this post, I hope you'll do so over on the SfSN site if possible. I'm not sure if anyone reads the comments over here, not on my Monday posts, anyway.

Have a swell week, yo.

It's just a thing.

Schuyler brought something significant home yesterday. It wasn't much to look at, just a scrap of paper with an email address. It was from one of her lunch table friends, the met I met when we had lunch.

Schuyler may be on her way to having a real and age-appropriate friend.

Hopefully they'll opt to spend some time together outside of school. I'm trying to stay out of this, aside from bugging her about how lunch went every day like a big pest. Schuyler sometimes needs a little persistent nagging to follow through on things. I can do that.

Anyway, I guess it paid off, because now they appear to be friends. Schuyler emailed her to ask if she wanted to go to the mall sometime soon. We'll see how that turns out.

Earlier this evening, when Schuyler was responding to an email from one of the older girls she met when we visited my friend's band program last year, she told her about her new friend. She described her as nice and kind and funny. Interestingly, she didn't mention that her new friend uses a wheelchair.

I felt pretty certain that this was a good thing, Schuyler simply listing the things that are the most important to her about her friend. But at the same time, I recognized that there was a possibility that she might see the wheelchair as a negative, something she didn't want to tell someone.

So, I asked her about it, because I'm that guy.

"So I'm curious about something," I said. "Why did you decide not to mention that she uses a wheelchair?"

Schuyler's eyes lit up. "Oh yeah!" she said, going back to the still-unsent email and adding "and she uses a wheelchair". I liked that response; it suggested that she might have actually overlooked that fact.

"Do you think that's an important thing to say about her?" I asked.

Schuyler thought for a second. "Yeah, it's important."

"Do you think it's a bad thing?" I asked.

"No," she said. "It's just a thing."

Well, there you go.

Unfair Monsters

Monday means a new post at Support for Special Needs. Schuyler went to the American Girl store over the weekend. I should have seen what was going to happen, but sometimes my hope for Schuyler's happiness blinds me to the dangers of the world, even when the danger IS her happiness.

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.

Alone

It began with a simple question at the grocery store last night. We were choosing all the pieces for Schuyler's lunch and were trying to change things up a little. We wanted to get her some new drinks but were unsure if she would be able to open the bottles. Schuyler's polymicrogyria has some big features and some small ones, and one of its less frightening but still annoying impairments involves her fine motor skills. We asked her if she thought she would be able to open the bottle. She said she thought so, but still seemed a little unsure.

"Well, if you have trouble, you can ask one of your lunch friends to help out, right?" I asked, remembering that one of her teachers had mentioned how she thought Schuyler ate lunch with some friends.

Schuyler sighed and simply said, "No."

"Why not?" I asked.

"Because I always eat lunch by myself."

And there it was.

We told her that we'd heard that she had friends that she ate with, but she shook her head. "I eat by myself every day," she said. "No one will eat lunch with me."

It was an emotional ambush, this conversation, and it took the wind right out of our sails. I don't know why we were surprised by this variation on a sadly familiar theme in Schuyler's complicated middle school life, but of course we were. It's happened before, that thing where someone told us a Maybe Thing ("I think she eats with a little group of friends..." or "She could go on to live independently one day...") and our desperate parent brains translated it into a Definite Thing. We can't stand to think of her being alone, so we allow ourselves to believe that of course she's not alone. I've written about how Schuyler's relationships at school are different, but it never occurred to me to imagine her sitting at the lunch table all by herself while the mass of chattering classmates swirled around her, past her, without her.

I didn't know how she would react to the offer (I could only think of how I would have responded to a similar proposal in my youth), but I asked her if she would like for Julie or myself to come to school and eat with her. She surprised me a little by saying yes immediately. As we continued our trip through the store, she asked me again a few times.

"Are you going to come eat lunch with me?"

Later, as we unloaded the groceries from the car, Schuyler looked at me and simply asked, "Why doesn't anyone want to be my friend?"

Because there were some pieces of my heart still intact from her earlier confession about her solitary lunches. They needed breaking, too.

I wish I could say that Schuyler's situation is unusual, but any time I've mentioned this on FaceBook or Twitter, I hear from other special needs parents and grown persons with disabilities, about how yes, their kids had no real friends, certainly no neurotypical ones, or how they themselves had grown up thusly. Some writers with disabilities told me that as adults, they still struggled to find friends, or had given up altogether.

A recent study by Dr. Anne Snowdon shocked exactly none of us when it revealed that more than half of the Canadian children with disabilities that she studied had either only one friend or no friends at all. Only one percent of the kids she studied spent an hour a day with a friend. By the time they turn ten, social pressures diminish most of whatever efforts neurotypical kids may be making to connect with their disabled classmates. The window closes, and rarely opens again.

My reaction to that study was the same as many of the parents I heard from. I was mildly surprised that the number of special needs children who DO have friends was as high as it was, frankly. But then, these are polite Canadian kids who haven't been taught their whole lives that their value and that of their friends and social groups is measured by how very very exceptional they are.

With all the loving adults whom she loves and who love her back so intensely, and with so many people on the Internet pulling for her, it's hard to imagine a kid like Schuyler having difficulty making age-appropriate friends. It's also unfair of me to blame her classmates, even though I guess I just did. These are twelve year-olds, they have so little experience with concepts like inclusion and compassion and intrinsic self-worth. In the Lord of the Flies world of middle school, they are all trying to keep up, and their world is one of communication, fast and fluid. They may simply lack the ability to slow down and connect with someone like Schuyler. I get that.

It's not easy for her, like it's not easy for most special needs kids. And while Schuyler seems happy enough, it is becoming clear that this matters to her more than she generally lets on. I feel like she's waiting on a solution from us. As she should.

We're exploring some mentoring programs that might be able to help, such as Best Buddies Texas. There aren't any middle school chapters in Texas at this point. Well, there ought to be. Maybe it's time there was one, and who better to lead that than Schuyler?

When Schuyler asked me why no one wants to be her friend last night, we brought in the groceries and sat on the couch. While she leaned against me, her head on my shoulder, I tried to explain the best I could that it can be hard for people to make friends with someone who is different like she is. It's not always that they don't want to, I said, but spmetimes they're just not sure how.

She seemed to understand why that might be, even before I said more. "They talk so fast," she said. 'I can't talk like they do."

I didn't have any great answers for Schuyler, and I didn't pretend like I did. I could only tell her that yeah, this is hard, but we'd think of something and we'd find a way to make things better. As has been the case many times before, she didn't seem disappointed by that sad, shitty answer. We could fight that particular monster another time. I think mostly she just needed to put it out there.

Living in The Future

It's Monday, and that can only mean one thing (besides renewing your secret desire to burn down your place of employment). Yes, it's my weekly post at Support for Special Needs.

This week, I am especially grateful to SfSN for the opportunity to talk about the upcoming panel I'm participating in at SXSW Interactive, and a very special video project being put together as part of that panel.

So please go read my post and contribute your thoughts on video if you can. As you'll see from my own contribution, cleaning up and looking nice for the camera is clearly optional.

Simple gifts and sleepless nights

Monday is upon us, and with it a new post at Support for Special Needs. We had a moment this weekend, a simple and lovely moment before Schuyler's monster showed up and wreaked havoc on her. I am hopeful that the moment will live in her memory longer than the rest. I think it will.

---

Addendum, written on Sunday night, after everyone went to bed)

I've got more to say, I guess. My apologies for the tone being pretty much the polar opposite of my SfSN post. It happens.

A few hours after the incident I described above took place on Saturday, Schuyler had what we believe was another complex partial seizure. Not a bad one, and she was distracted by a case of the hiccups and a case of the giggles shortly thereafter. Do seizures give you the hiccups? Or the giggles, for that matter? Fuck if I know, but at least she bounced back from the seizure.

But then on Sunday, she had another, and it was bad. Bad like she hasn't had in a long time. The details would embarrass Schuyler, but it shook all of us up pretty thoroughly. It happened when she was by herself in the bathroom at a restaurant, too, and if Julie hadn't been there to go in and check on her, I don't know how it would have gone down. So does this mean that Schuyler, a twelve-year-old girl with a fierce independent streak, can't go to the bathroom in public by herself anymore? Maybe it does. And that kills us.

Early this evening, Schuyler's rough day finally ended in hysterical tears over what was actually an extremely minor situation. I think she just ran out of Schuylerness and needed to cry some "I fucking hate my monster" tears. As for me, my own personal definition of heartbreak has been updated now.

I'm going to be blunt now. When I go online, I read a great deal about accepting and even celebrating the neurological and physical tweaks that make kids like Schuyler different, and for the persons with disabilities and their families for whom that approach feels appropriate, I say good for them. Really, I do. I'm not in the position where I think I should tell other people how to face disability, either their own or that of the ones they love, and I would hope that I could expect the same in return, although I am all too aware that I can't, not always.

But let me make something clear, as if I haven't already. Schuyler's polymicrogyria makes her unique, but it also robs her of much of the life that she wants to live. It doesn't make her a special snowflake. It takes away her speech and leaves her working like mad just to make herself understood, and infinitely more distressing for her, to understand that world for herself. In a school full of preteen girls whose social existence revolves around communication and a growing maturity that she does not yet have, Schuyler is at a remarkable disadvantage, and she knows it. God, does she know it. "I want to talk like everyone else," she said again over the weekend, this time to Julie. She has a developmental disability, but she gets it, with growing clarity.

Schuyler probably wouldn't understand the nuances and complexities of the concept of neurodiversity, but I feel relatively certain that she would reject it entirely if she could. Schuyler doesn't want to celebrate her differences. She wants them to fucking get out of her way. And now, as always, my chief frustration as her father is that I am powerless to give her that. All I can contribute to the fight against her monster is to write about it, and all that really does is validate the fears and the anxieties of parents with kids like her, and to clarify things a bit for everyone else.

But for Schuyler, though? All I can do is be there to clean her up and dry her tears, and to tell her that yeah, I understand that it sucks, but there's nothing that can be done to change it so she just has to work harder to make her way in this grand rough world. And that's a shitty, stupid answer, but on this particular multiple choice quiz, there's the truth, and there's a bunch of lies, and while some of those lies might be comforting and cheerful, they are still lies, and I simply won't tell them to her.

What I really want her to know is that I would step in front of a train if it meant that she could live the rest of her life without her monster. I would do so without hesitation, and if they looked on my shattered face afterwards, they might even find a smile. But that's not an option. And on nights like tonight, that is hard to bear.

Post-Ictal Puppy Bowl party

A Musical Interlude

To help make up for the sad, gloomy Grim Reapy nature of that last post, here's a little something that Schuyler and I did tonight while practicing her marimba music for her next concert. I asked her if she wanted to share any of it with all of you, and we went through all the clips we shot and found the two she liked the most:





And then we started to have some fun, and ended up with this unedited and unrehearsed forty seconds, which is now just about my favorite thing we have ever committed to video.

Ladies and gentlemen, The Awesome Song:

The Big Bad

It's Monday, which must mean 1) your weekend is over, sorry, and 2) I have a new post up at Support for Special Needs.

This one is a little dark, although it's also one that I'm slightly more proud of than usual. It deals with a subject that a particular, often forgotten about subset of special needs parents don't usually like to talk about but which never leaves our minds entirely: the possibility of our child's disability proving to be fatal.

It's something that has been on my mind a lot lately, mostly because of Schuyler's increasing seizure activity and that recent story about a kid Schuyler's age who died as a result of his own polymicrogria. I thought it was time for a reminder, perhaps mostly to myself, that among all the things we advocate for, significant and petty alike, some are beyond our reach.

Major league bummer, I know. Here's a picture of Schuyler's cute little piggy (buckled up in the car because, you know, safety first), just to cheer you up. (Schuyler is into these big-eyed animals now, and I have to admit that whoever came up with them is a genius. I never had a toy make me feel guilty for NOT buying it before. I know, I have Issues.)