October 25, 2011


Schuyler's monster stirs at times, like Schuyler herself in the middle of the night. We wait, and we watch, and we hope. We don't pray, because that's not who we are, but our hope feels a little like prayer. "Not yet," we ask the Universe. "Give her some more time to just be a kid."

In the midst of her busy middle school life, Schuyler is pestered by her monster. We think she may have had a seizure at school last week. And she had another choking incident recently, a rare event that probably only repeats itself at all because of her complacency, and ours. I can remember choking incidents from when she was much younger, and how upset we all became. Now when they happen, we keep our emotions in check, Julie and I. And Schuyler, too. Irritation, but no tears. She makes adjustments, as do we.

So it goes.

A few nights ago, a storm moved in, all flashing lightning and rolling thunder, and even a little hail. I was the only one still awake, so I went into Schuyler's room to check on her. She was fine, of course; Schuyler has inherited my love of inclement weather. She was awake, quietly watching the storm from bed. I asked her if she was okay, and she asked me to stay. We "oo"'d and "wow"'d for a while; she fell asleep soon after.

It was the first time I'd tried to sleep next to Schuyler in a long time, and certainly the first time since her last EEG. You may remember that the results were inconclusive, but of particular interest was this finding:

Once again, like a happy playground that becomes a scary place full of perverts and drug dealers at night, Schuyler's brain transforms into a different world while she sleeps. On the left side of her brain in particular, she experiences epileptic discharges of a non-seizure variety. They are frequent and big, but brief, lasting about a fifth of a second. They're not causing seizures, although they may lead there in the future. (I read somewhere that people don't have seizures during dream sleep. I don't know if that's true or not, but I kind of like to believe that it is.)

These little Bzzzt!s ARE, however, the likely cause of Schuyler's fitful, twitchy sleep patterns. It sounded like her sleep video must have been exhausting to watch. We knew she was a restless sleeper; she hasn't been able to share a bed with us for many years, as she tosses and fidgets and sprawls out. (Surprisingly, though, she's not a light sleeper. She can still sleep through anything, but that sleep is very active. Weird, I know.) Waking her in the morning is always fun because you never know what kind of "Law & Order" murder victim pose you'll find her in. Now we know why. It's the Brain Pops, as we've started calling them.

Lay next to Schuyler while she sleeps and you'll experience what her sleeping world is like, or at least you'll understand how unquiet that world must be. She moves, not constantly but with a startling regularity. Schuyler doesn't wake up, but I can't imagine her sleep is very restive. She doesn't seem particularly tired the next day, which is probably due in part to the fact that we make sure she gets nine hours of sleep every night. But I can't help but think that her body has adjusted to a life of Brain Pops, of tossing and twitching and kicking. I couldn't last more than about twenty minutes before I had to quietly sneak away. Schuyler never awoke. But she never grew still, either.

Schuyler lives a life of small compromises. She makes dietary choices because she knows that the wrong choice could kill her, but she does so casually, matter-of-factly, without drama. She drools sometimes, which is hardly a secret, so she wears wristbands everywhere she goes and wipes her mouth discreetly. But she chooses the kinds of bands that are worn by skaters and roller derby girls and makes it part of the "I'm a punky but regular girl" image she strives to project. Schuyler has a tooth that is seriously out of alignment, but braces would cause her drooling to go into overdrive, so we all choose the lesser of two social deaths. She proudly calls it her fang, without much in the way of self-consciousness.

Schuyler adjusts to her reality, the one with the monster, and the world tries its lumbering, ignorant best to do the same. Julie and I live with our fear for Schuyler's future and do everything we can to help her navigate the most treacherous waters. I'm learning to identify the issues and people who are important for Schuyler and this family. I'm learning to teach Schuyler to advocate for herself while simultaneously trying to protect her from self-serving voices that would use her story to further their own agendas. I'm adjusting to a world in which Schuyler's independence is growing, particularly where that independence concerns her relationship with Julie, and with me.

The world changes. Schuyler changes, and at the same time she doesn't. She remains the weirdest and most wonderful person I've ever known. I adapt to her changes, some of which are monster-driven and others just part of her transition from Little Girl to Future Schuyler, and of course the hardest are the ones that are both. Schuyler's brain is like no other in the world, and it is guiding her in ways that no one can predict. That's scary for us, and sometimes, she admits, for Schuyler. But I'd be lying if I denied that it's also breathtaking to behold, or that it's the greatest privilege of my life to be her father.

Schuyler's not like me, and she's certainly not like you. But if the world can adjust to the scary possibilities, of which there are many, it will be rewarded by the simple fact of her existence. I have been thus rewarded. And I will continue to be, in ways that neither you nor I can even begin to imagine.

October 22, 2011

Manly Man Stuff, for Men

The concerns and issues surrounding men's health don't get nearly as much media attention as they should, but it's probably our own fault. We don't generally like to talk about it. Surpise! Men are taciturn about our health, particularly when discussing how it falters. Read more about it in this month's Journal of Duh.

Every November, however, thousands of men join the Movember campaign and grow a moustache to raise money and awareness for prostate cancer and other cancers that specifically affect men. Last year, over sixty-four thousand people in the US raised over $7.5 million. That's a lot of cheesy moustaches.

This year, I've joined up with a group of bloggers and writers who will be growing some lip fuzz for the cause. I would be thrilled if you would go donate at my Movember page.

More importantly, we would love to have other men (or women; I'm not here to judge) join the team. Anyone who has ever seen the atrocity that grows on my face knows that I'm not exactly entering this thing as a ringer. When I grow facial hair, it generally turns out looking like I need to wash my face or possibly consult a doctor. Unless you've got a job as a television anchorman or a professional soup taster, you can probably devote a month of your life to growing an ugly thing on your face for a good cause. And fighting prostate and testicular cancer is undoubtedly a good cause.

So join up, guys. The man-bits you save could be your own.

October 17, 2011

The Road

I wrote a piece called "The Road" for my friends over at Support for Special Needs, on the topic of Schuyler (surprise!) and transitions. (Nothing about cannibalism or the end of civilization, alas. Next time, I promise.) You should be reading over there anyway, but if you're not, this is a chance to get your toes wet. I hope you'll stick around.

I kind of like this essay. It's one of those instances where I set out to write one thing, a straight-forward piece about the transition to middle school, and suddenly found that I had something very personal to share instead. Ah, narcissism. Is there anything you can't do?

October 9, 2011

"If I were you, I'd go punch someone in the face."

Because poor people still like to occasionally have nice things, I tried to get an iPhone.

Because big, weaselly companies don't like to play fair with poor people, I did not in fact get one.

First, a little backstory. A couple of months ago, on the day I was leaving for a conference in Utah, my silly little purple Blackberry died dramatically, complete with heat and a delightful burning smell. I immediately took it to my local Sprint store and was met at the counter by a young man whom we will call Sprint Weasel Prime, since it is with him and his actions that our story really begins and ends.

This Blackberry was never a good one. I purchased it in a pinch after the failure of my previous phone, and its only real selling points were that it was cheap, and it was purple. And over the course of a year of use, it really only excelled at being purple. Still, its death was dramatic, taking out both the battery inside and a second battery installed by Weasel Prime. It was frankly the only impressive thing it had ever really done. Well-played, crappy purple Blackberry. Well-played.

Weasel Prime went in the back and checked inventory or played Angry Birds or whatever they do back there, and after a few minutes, he came back and informed me that the purple Blackberry could be neither repaired nor replaced. The only solution was a new phone, but WOO!, there was a different Blackberry that I could get for free, using my upgrade, which had been sitting unused for a couple of years. Given that my choices were apparently to do this or carry a broken, occasionally smoke-emitting purple phone, I went with this option, the only one I was presented with. Our transaction complete, I bade farewell to Sprint Weasel Prime and went phonefully on my way.

Fast-forward to last Friday, when I went online to pre-order the brand new iPhone, available for the first time from Sprint. According to the Apple site, it would cost me about two hundred bucks.

Except no. Apple redirected me to the Sprint site, where I was informed that the new iPhone would actually cost me a cool six hundred and fifty real, non-boardgame American dollars.

You know why, and I should have as well. It was because Weasel Prime used my upgrade to replace my crappy purple Blackberry with a slightly less crappy one. (To be fair, as an excited Weasel Prime had pointed out, it IS a flip phone, which I suppose is good if you frequently butt-dial or like to pretend you're Captain Kirk.) As a result, my only options for getting an iPhone were to sell a kidney on eBay or wait until June.

The customer service representative I spoke to on the phone was incredibly nice and understanding; let's call her Huggy Weasel. She admitted that Weasel Prime was completely wrong to say that using my upgrade was my only option.  Under my service agreement (for which I'm sure I pay a little something something every month), I was entitled to a replacement phone, either refurbished or a close equivalent model, albeit probably not purple, alas.  She went further, too, admitting that the company was 100% aware that many of their sales associates in their stores were doing the exact same thing, mostly to get existing customers out the door and free up some face time for new, revenue-generating customers. Sadly, she concluded, there was nothing she could do for me. I would have to go back to the store and get them to make it better somehow.

"If I were you, I'd go punch someone in the face," she suggested.

I went to the store, although I was admittedly hoping that some non-punching options might present themselves. Once I started talking to the guy we'll call Mule Weasel, I began to understand why Huggy Weasel recommended fisticuffs.

Mule Weasel did not budge. He did not even admit that using the upgrade the way it had been used was wrong. He presented an immovable wall formed in equal measure of bricks made of "I dont know" and "We can't do anything for you here". If there was one emotion visible on his face, it might be deep regret that my name wasn't Robert Go-Fuck-Yourself, because that was clearly what he wanted to say to me.

My favorite moment? When the original Weasel Prime lumbered over, listened to our conversation and said, with a little touch of hurt in his voice, "When I used that upgrade, you actually thanked me!"

"Well, if I'd known you were screwing me, do you think I would have thanked you?" I left shortly after that.

My final conversation with Sprint took place as soon as I got home. I called and spoke to a number of representatives. They probably don't warrant names here because the only thing they really did was escalate me up the chain. They didn't do so quickly; by the time I made it to the third rep, I felt like I was crawling up the side of Mount Doom, on a quest to throw my fancy flippy Captain Kirk Blackberry into the fires from whence it was forged.

The last time I was put on hold, it was for, and I kid you not, FORTY MINUTES. I think any time you're on hold for longer than five or ten minutes, you start wondering if the customer service representative is just hoping you'll lose hope and go away. So yeah. Forty minutes.

Finally, I found myself speaking to the Final Arbiter of Customer Service Issues Weasel. The Final Arbiter Weasel repeated my story back to me (with a few passive-aggressive "You claim"s thrown in) and then presented my options. They were as follows, in no particular order: I could 1) cheerfully pay $650 dollars for an iPhone, 2) cheerfully wait until June and use my miraculously regenerated upgrade to get an iPhone, or 3) break my contract and cheerfully pay the steep financial penalties for doing so. He also made it clear that I had three further options, which could be best expressed by replacing the word "cheerfully" with "grudgingly" in the first three options.

One thing I've learned over the years is that when you're on the phone with a customer service representative, you have one little piece of power, just one: they are almost never allowed to terminate a conversation until you agree to do so. They can put you on hold for forty minutes, they can present an implacable wall of NO, they can be condescending, and I suppose they could just sit there making little fart noises while you talk. But unless you swear at them, you can almost always say whatever you want for as long as you want and waste as much of their time as you feel like wasting. That's a free tip, kids. You just learned something!

To finally get me off the phone, the Final Arbiter Weasel offered to email the district manager for Weasel Prime's store and let him address it however he saw fit. And here's where my favorite conversation in this whole story took place.

Me: Can you copy me on that email so I can follow along?

Final Arbiter Weasel: No, I can't do that.

Me: Huh? You can't copy me on that email? Really? Why not?

Final Arbiter Weasel: Because... the email's going to contain proprietary Sprint information.

Me: What? Your email about my case is going to contain secret information? What could that possibly be?

Final Arbiter Weasel: Um, it's the how the email is formatted that's proprietary.

So there you go. Aside from this call that I'm never ever ever going to receive from the District Manager Weasel, I think that's about where things stand now and forever. I can either go away quietly, or not go away not quietly, but it's pretty clear that despite the admission of Sprint's own representative that the original action taken by Weasel Prime was inappropriate and unfair, the official stance of Sprint is "Tough titties, customer."

Now let me be very clear. I understand completely that this is a very First World problem. I know that families face big problems every day that are much more important than this. But you know what? We're one of those families. Just because ninety-five percent of my blog posts are about Schuyler and our neverending quest to help her live a meaningful life in the face of real tooth-and-claws unfairness doesn't mean that when people behave like tools, I'm going to say "Well, this certainly doesn't compare with worrying about seizures or Schuyler's education or her future or whether or not she's going to be eaten alive by this grand rough world, so no problem."

Actually, I think for special needs parents, the opposite may be true. We spend every day of our lives waging battles that we mostly expect to lose or at the very best fight to a draw. And by every day of our lives, I mean right up until the day we die, when our last thought on this earth may very well be "What will happen to her now?"

So speaking just for myself now, when I'm confronted by forces driven not by invisible, implacable monsters but instead by flesh and blood humans whose only power over me is in what fucking PHONE I can use, do you think I'm afraid? Do you think I'm likely to give up quickly, or at all, when I'm treated unfairly by a sales associate in an ugly golf shirt with a corporate logo printed on his moob?

Do you think I'm inclined to stop fighting that little fight even when it's pretty clear that I'm not going to win? When the only thing I can do to address my grievance is to do my best to convince as many others as possible not to do business with a company engaging in unfair practices? Do I quit because it's a small fight, in the shadow of my family's larger ones?

No, I'm really not so inclined. And if that makes me a dick in your weasel eyes, that's probably true. But I'm the dick that the world has made me. Well, mostly.

See you in June, Sprint.


(Note: I would like to extend my deepest apologies to any weasels, ferrets, martens, ermines, minks, otters or stoats who may have been understandably insulted by my metaphorical representation of these particular employees and agents of the Sprint Nextel Corporation.)

"Dude.  Uncool."

October 2, 2011

Schuyler is my co-pilot

The internet hasn't been a very happy place lately. Here's a little something, just for fun.

September 24, 2011

The small print

Julie asked me a question tonight as we walked through the grocery store.

"Am I broken?"

We discussed it for a while amongst the Chef Boyardee and the Cap'n Crunch, and we concluded that yes, she was broken. We are a broken family, in some ways that are obvious and others less so. She is broken, and I am broken, and Schuyler is broken. We are like a good deal made ordinary by all the faults exposed in the small print. We go through the world operating with stopgap repairs, and we fuck up a lot, but we never stop. And for that, I am proud of us, fiercely so.

Parents break a little when they raise kids who are different or who present big challenges. Some of that breaking is bad, leaving us in an even less ideal position to take on those challenges. But I think some of it is for the best, too. We break some of the neurotypical narratives, we break some of the ridiculous expectations that we might otherwise mistake for Very Important Things, and we shatter the rules that don't make sense for us. We learn to break some of the parts that give a damn about what you think of us. Sometimes it is in the breaking that the solutions are hiding.

Julie and I keep moving forward, through the stumbles and the moments of doubt and all of it, and we do so with our own demons, ones that we brought to the table long before Schuyler was ever born. And sometimes the best thing we can do is make sure that we don't both show up for parenting duty with that haunted look at the same time. Sometimes that really is the essence of good parenting. Knowing when to tag out. Knowing when we simply can't tag out, so we simply don't.

In those moments of doubt, it is almost always Schuyler who shows us the way out. She holds a positive spark, and she sees when we need that spark. She always seems to see it. And if there is one thing we all share, the limping members of this broken tribe, it is an absolutely unbroken love, and an unwavering commitment to protect each other, and grow each other. We don't get it right all the time; sometimes we (mostly I) get it astonishingly wrong. But we never stop, and we never lose sight of it.

If, in the past weeks or months or years, you have determined that I am a mostly imperfect father or advocate or whatever, I can only confess that it's true. If you look at my family and see the cracks, the spackled-over holes and the duct tape holding some parts of it together, I can only apologize for the shabbiness of our presentation.

But if you could just see that love, and how sometimes it brings joy and sometimes it hurts, but it always burns, painfully and breathtakingly, and never flickers, then I would hope that you could recognize that our very broken machine runs because its engine is true, and the rest is just stuff.

September 18, 2011

Soccer monster

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

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

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

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

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

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

September 16, 2011


Every day, I believe our society is moving towards recognition of the fact that making fun of people with developmental disabilities just isn't funny. I believe that, or perhaps I just want to believe it so much that I convince myself of it. But I also believe that movement is mostly incremental, and not without reverse steps.

The story of Gemma Hayter reminds us that the slowness of our developing humanity has a terrible price.

Gemma Hayter was a 27-year-old woman with a developmental disability, living independently in Britain, who was brutally tortured before being left to die naked and alone on a railway embankment. The details of her treatment are horrific enough that I won't repeat them here, except for one point that I think is too important not to share: she believed that the people who committed the atrocities against her were her friends.

Following the sentencing of her convicted killers, Hayter's family released a statement, and one line jumped out at me in particular: "Our Gemma was a very loving and vulnerable woman who trusted everyone, and her trusting nature and vulnerability led to her death on 9 August last year."

That could describe Schuyler. It could describe a great many of our loved ones, children and adults alike.

Gemma Hayter's case is a stark reminder that the seeds of societal disregard for persons with developmental disabilities ultimately manifest in abuse, in violence and in death and heartbreak and deep sorrow. If you choose to look, to really see, you can follow the line from jokes about "retards" in film and television and the stages of comedy clubs to the young people repeating them on the schoolyards, and you can watch those kids grow into young adults and observe them as they live their lives without empathy or compassion for those who have never had value or humanity in their eyes. Small steps, leading inexorably to a moment where killing a living, thinking, feeling human being might be difficult enough to give them pause, but doing harm to a worthless retard, just for laughs? What's wrong with that? How is the world diminished by a loss like that?

It's not a butterfly-flapping-its-wings-in-China kind of mysterious connection. It's real, and there is measurable responsibility to be faced for the harm that springs from such small seeds.

As I said, I do feel like there are incremental steps being taken towards a larger good. Sometimes you have to look hard to see them. Sometimes I think I see them when they're not there. Overbelieving, perhaps, or overwanting.

I occasionally listen to a podcast called WTF, hosted by comedian Marc Maron. Maron can be a really sharp and funny comic, and he's done some fantastic interviews with others in his industry. I think I was vaguely aware that he'd been something of an apologist for comedians who had gotten in hot water for using words like "retarded" in their work, but I'd never heard him actually do so himself. That is very much a distinction of questionable significance, I admit.

Recently, Maron interviewed a comic named Anthony Jeselnik. Jeselnik's comedy works for a very specific crowd, I suspect. He's a joke-teller. He delivers short, one or two line jokes, and they are generally both absurd and edgy, crossing as many lines as he can find to cross. Imagine the love child of Stephen Wright and, I don't know, Satan. Jeselnik's humor isn't for everyone; I can't imagine very many people sitting through an entire set of his without a thinking "Oh, wow, I don't know about that" at least once or twice. To be honest, while I recognize how excellent Jeselnik is at his craft, I don't care for some of his material myself, partly because I think he's planting the kinds of seeds that I spoke of earlier. I will say, however, that unlike someone like Tracy Morgan, Anthony Jeselnik isn't trying to have it both ways. He's not trying to offend without consequence while at the same time depending on work in bland network tv comedy or family-friendly film. If you make the effort to go see Anthony Jeselnik in a club or listen to his material on tv, you've got a pretty good idea of what you're going to get. Being offended at one of his shows is a little like going to a Ku Klux Klan rally and saying, "Wow, these guys are kind of racist."

In Maron's interview with Jeselnik, there was a lot of discussion of "How far is too far?". Perhaps inevitably, the topic turned to jokes about people with developmental disabilities, and again, Jeselnik declares the topic fair game. But here it's Maron who discusses his own material on the subject, material that I hadn't heard before. It's hard to listen to, even as he is firmly convinced that his humor is inoffensive.

Marc Maron:
"I used to tell this story, and I just stopped telling it because there's nothing right about it... I genuinely said to the audience that when you see a mentally disabled person, it's hard not to be filled with joy because they're so childlike and they experience joy so immediately that when they're having a good time, you literally feel elated because of their sort of unfiltered ability to experience joy. So I don't think we should be arguing about the word 'retarded' or about 'mentally challenged' or 'developmentally disabled'. I think they should be called 'God's clowns'... And I meant 'God's clowns' in a nice way. I didn't mean like God was making a fool out of them. They're there spreading joy in this way. It was really well-intended."

So yeah. As much as Maron insists that he's not being offensive, he is in fact being WILDLY offensive. The fact that he's being cute about it doesn't change the fact that he is completely dehumanizing people with developmental disabilities, reducing them to a superficial and amusing construct. As soon as I heard the words "God's clowns", I made a mental note to remove Maron's podcast from my iTunes subscription list.

But then he continued, and maybe won me back a little. Maron said that later that night, he attended a concert, and standing behind him was a man with a developmental disability, shouting joyfully for the band. And at first, Maron felt validated by this young man and his exuberant happiness. But then...

Marc Maron:
"When I heard him, I again felt that excitement like, you know, he's so excited, it's so raw. And then I look over and he's with someone who must have been his dad, and this dude just looked like every bit of everything had been drained out of his being. And it was in that moment that I realized that I guess it's only fun for a little while. And that's when I stopped doing that bit."

There is so much that's wrong with this. The fact that he can't identify at all with the young man himself, but only feels the beginning of compassion for the young man's father, is troubling. More than troubling, really. It is an incomplete epiphany. But when I listen to it again, I can at least hear the beginnings of something, a spark of understanding. Maron sees how the lives of persons with disabilities might be more challenging than he's considered in the past, although he's unable to see any further than the challenges facing a disabled person's family. It's woefully inadequate, but it might just be a different kind of seed, one from which good things might sprout.

Later in the interview, Jeselnik also has his own "almost" moment. He's unflinching in his commitment to making jokes about those with developmental disabilities, but he goes on to explain why he won't make jokes using the "N-Word":

Anthony Jeselnik:
"I had a joke where I used the word 'nigger' but I just couldn't. I said it twice in the joke, and I said 'I just can't, I can't do this.' I didn't feel right saying it."

Marc Maron:
"Well, you probably shouldn't, right? Does that frustrate you, that you can't say that word?"

Anthony Jeselnik:
"It kind of bugs me because I feel like I can't say it. There's no other word that I feel that way about."

Marc Maron:
"And why do you feel like you can't say it?"

Anthony Jeselnik:
"You know, I feel like I have friends who I can picture their faces, you know, black friends, when I say things..."

Marc Maron:
"But you don't want to be one of those guys who are accused by your black friends of just using it gratuitously because you want to try to take some ownership of that word."

Anthony Jeselnik:
"I don't even care about being accused of it, I just feel like that word has so much power over a certain group of people, more than any other. I would never want to hurt someone's feelings... That word gets so specific that I don't think I could look my black friends in the face if I came off stage after telling that joke."

Marc Maron:
"You know why that is? Because there's no reason for white people to use that word. I've had discussions with guys before who are like, 'Hey, it's just a word.' Yeah, okay, but it's a word that has a very deep meaning to a lot of people..."

It makes me think of this again:

Here are two guys who are, in my opinion (and I suspect in yours, too), squarely on the wrong side of history regarding humor based on laughing at people with developmental disabilities. And yet, I can't help but think that there might be seeds there, tiny little dormant seeds that may never break open, may never send shoots up into the sun.

But they might. They very well might. That's the kind of thing I hope for.

September 10, 2011

The Saddest Place in the World

(Chapter Five, "The Saddest Place in the World", from Schuyler's Monster: A Father's Journey with His Wordless Daughter, by Robert Rummel-Hudson. St. Martin's Press, 2008)


In October 2000, we received a visit from a friend I had made online through my journal, a writer from Ireland named Caoimhe. (That's pronounced "KWEE-vah", by the way. Well, of course! How else would you say it?) She was visiting the States to attend a conference for online writers, along with Dana and myself and a number of my favorite writers and friends. While she was in New Haven, she wanted to visit New York City and see another friend of ours, a popular online writer and personality named Nina, who was unable to attend the conference. I piled into the car with Julie, Caoimhe, and little ten-month-old Schuyler and drove down to meet Nina at the grandest, coolest, most New York location we could think of, one which would require no directions other than what we were told by our eyes and which would be certain to impress everyone.

So it was there that Schuyler and I found ourselves on a chilly October afternoon, looking up at the biggest thing in the biggest city either of us had ever experienced. As impressive as the World Trade Center could be from any direction as you approached it, it wasn't until you stood at the base of the towers looking up that you could truly appreciate the enormity and seeming impossibility of their existence. I had seen them before, during a conference and performance with my college trombone ensemble five years before, but it was still hard to be jaded. For Schuyler, not even a year old and still tooling around in her stroller, it was well and truly blowing her tiny little mind.

We found ourselves alone in the plaza. Nina hadn't shown yet, and Julie had taken Caoimhe inside on a quest for coffee. Schuyler and I played around the fountain under the giant spherical sculpture and chased birds around with her stroller, to the annoyance of cool Manhattanites and faux-cool tourists around us. We had a hot dog and played and danced, and it was on this evening that I heard for the very first time the braying, hysterical laugh that Schuyler still hasn't lost. I've heard that laugh a thousand times, but on that night, between the towers as we played and ran and lived antlike in their looming magnificence, we heard it for the first time. That's one of two things I remember vividly about that night.

While we waited for Julie, I pushed Schuyler's stroller up to the long, graceful columns of the North Tower until the bumper touched the wall. I reached down and removed her tiny gloves so she could reach out and touch the surface with her bare hands. She stared up at the long, sleek metal pillars as they fanned out into long vertical lines that blurred together long before reaching their end at the top. The tower seemed to sway gently beside its twin in the sky, an optical illusion created by the clouds moving overhead. We then ran across the plaza, scattering pigeons as we went, until we arrived breathless at the South Tower. As I bent to catch my breath, Schuyler leaned forward to touch the cool, smooth surface, her eyes again straining overhead.

That is the other moment of that day I'll remember. Schuyler's hands, impossibly small and delicate, touching the towers, so improbably big and forever.

Julie was working at a bookstore in Waterbury, Connecticut, when the first plane hit. She was scheduled to lead a tour group of elementary school kids through the store, and by the time their bus rolled up, she was waiting for them, pulling the teachers aside quietly to inform them that something horrible was going on in the city, but no one seemed to know exactly what it was just yet. The tour was given and the kids departed, and for the rest of the day, Julie and her co-workers caught scraps of news from customers and from a radio in the back receiving area of the store. It wasn't until she and her friends walked to Chili's after work that they finally saw the images for the first time. They drank beers and shook their heads as they viewed the explosions and the collapsing floors and the clouds of rolling dust, over and over again, with no context and out of sequence. Julie sat silently, watching a carnival of unimaginable imagery playing out on a soundless television in the noisy bar of an unremarkable chain restaurant, a banal American Everyplace intruded upon by Apocalypse.

That morning, I was sitting in a AAA office in New Haven, renewing my car insurance, when one of the agents announced to the office that his wife had just called him and told him a small airplane had just flown into the side of one of the World Trade Center towers. As my agent put together my policy, the others joked about what kind of dumbass pilot doesn't notice the twin towers in front of him. A few minutes later, the same agent announced that his wife heard on television that it wasn't a small plane after all, but an airliner. Shortly after, his cell phone chirped again. By now we were listening to him for more news, and so we all heard him say loudly, "Holy fuck."

United Flight 175 had crashed into the second tower.

By the time I had arrived at my office on the mental ward, mayhem had landed with both feet. I turned the key and stepped onto a ward buzzing with activity. Yale-New Haven Hospital was close enough to New York to see a large number of the thousands of injured people expected to head our way after the New York hospitals were inundated. Beds were being wheeled into empty rooms. Voluntary patients were being discharged, standing at the nurses' station with their belongings in hand, waiting to be sent out into a world that was suddenly scaring the shit out of each and every one of them. And us.

I went to my office and tried to get to the CNN Web site, but nothing was working. The servers were swamped. The only thing I could get to was a discussion board I sometimes frequented, so I reloaded it over and over, watching as people posted what they knew, and what they didn't know. It was a crazy stream of panic, a swirling mix of unbelievable rumor and inconceivable fact. One plane, two planes, maybe more. An explosion at the Pentagon caused by perhaps a helicopter, a crash on a Washington, D.C. freeway, a fire at the White House, an explosion at the Supreme Court building. NBC Nightly News reporting a car bomb outside the State Department. Some group called the Democratic Front of Palestinian Liberation had claimed responsibility. All air traffic was shut down. A third explosion at the World Trade Center, causing the top of one of the towers to collapse down to the thirtieth floor. No, the whole tower. Gone. One person wrote from overseas, "The republic is falling."

I didn't read that last part until later. I had left my office and walked down to the patient area for a moment to take it all in. As I stood there, a low moan rose from the patients and staff gathered around a television. I rushed over in time to see the south tower folding into the roiling cloud of dust. When the north tower collapsed twenty minutes later, the sight was greeted with silence. We were already adjusting to a world in which such things happened.

The nurse standing beside me shook her head. "We're not going to have any patients from this," she said. "Not a goddamned one." By the end of the day, the voluntary patients would begin returning and the extra beds would go back into storage.

When I picked up Schuyler at her day care, she was surprised by the long, suffocating hug I gave her. When we got home, we all watched television in silence. She was quickly bored by the solemn talking heads and played quietly in her room.

Julie and I stayed up late that night, listening to Peter Jennings on an ABC News radio feed. I couldn't stop thinking about all the people who didn't come home to their families, the ones who weren't lying awake in bed right now. Citizens of the world and children of God, they were out there in that horrific place. They didn't hug their kids that night. They lay in rubble or in the remnants of an airplane fuselage. No one knew how many. No one knew much of anything, we were bereft of information but floating in our fear and our anger.

"I'm scared," Julie finally said with a crack in her voice. "How the hell does something like this happen here?" Then again, more quietly, "I'm so scared."

Julie finally fell into an uneasy sleep. I got up and crept into Schuyler's room to kiss her slumbering head good night. I paused for a moment and then scooped her up and brought her back to bed with me.

I kept telling myself, "That's it, I don't want to hear any more about this," only to turn on the radio and listen to the endless analysis that had been playing nonstop for a week after the attack. We couldn't turn away. Our need to understand what had happened outweighed our desire for our hearts to stop breaking and rebreaking every time we heard more stories. We watched the news on television almost full-time now. Unavoidably, Schuyler watched the images as well, but without understanding. She saw an exploding airplane and was simply dazzled by the fireball, reacting with her curious half smile and a reaching hand. She touched the screen as it lit up, and I resisted the urge to pull her hand away as if there were a poisonous snake before her. I figured she had time enough to be afraid later. She had the rest of her life to live in this broken world.

On our way home from running errands, I found myself asking, "Do you want to go see it?"

"Yeah, I do," said Julie quietly. "I need to see this." Without a further word, I turned onto the Merritt Parkway and headed to New York. It had been ten days since the attack.

Entering the city was easy, much easier than I thought it would be. It wasn't until we were traveling down the Westside Highway that we started to notice a change. Passing the aircraft carrier Intrepid museum, we saw throngs of people congregating along three long walls running down the sidewalk. Paper covered the walls; there were hundreds of missing persons posters, for blocks. Julie didn't start to cry until we saw them. Police were everywhere, along with emergency and military vehicles. Fat military helicopters patrolled the skies.

The farther we headed south, the harder it became to ignore the hole in the sky.

When we reached Canal Street and could go no farther by car, we parked on a side street, pausing to change Schuyler's diaper. As we were sitting there, a pair of fire trucks raced up and stopped right beside us. Giant flags hung from their ladders. Firemen stepped out in their full gear, and suddenly we felt as if we were in the presence of celebrities. These guys were the biggest heroes in America, but to us they just looked exhausted and sour. We asked if they needed us to move our car.

"Nah, you're fine," one of them replied in flat tones. They were there for regular firefighting duties, but it was hard to imagine they weren't thinking about it.

About "it." It. One word to encompass the entire event and the whole place, this saddest place in all the world. Thinking about It, looking at It, smelling It. This It was the biggest It in the world.

We walked, pushing Schuyler ahead of us in her stroller. I didn't know the city well enough to know exactly where the towers had stood, but you could get a fairly good idea from the looks people on the street were giving in furtive glances to the sky. They were still looking for them, a week later.

As we got closer and the wind shifted, we were hit by the thing I had feared the most. It's impossible to describe that smell. Hours later, back in New Haven, I sat up late trying to describe the scene on my blog, and I realized with a start that I could still smell it on my clothes and in my hair.

On the streets of Manhattan, there was no escaping it. We turned down a corner and suddenly it was all around us; one moment it was faint, the next it was the whole world, a world of nothing but that smell. It was a burnt smell, warm like an animal, and sickly sweet. It was the smell of the most awful things in the world. It filled me with panic, and my first glimmer of understanding.

In the midst of it all, Schuyler was oblivious. She was happy to be outside, to watch the people and the lights and the near constant flow of emergency vehicles going past, the only ones on the streets this close to the site. Schuyler was fascinated by the stillness that had suddenly replaced New York chaos, and she saw the sky ahead of us. The way to the site was obvious. There was a great light streaming up from someplace nearby, up into the hole in the sky. Light, and smoke.

There were others on foot, mostly local residents, as far as I could tell. They walked slowly, aimlessly, like phantoms in a place already swirling with too many ghosts.

When we left New Haven, we hadn't discussed the wisdom of bringing Schuyler to this place. I know that must seem pretty irresponsible now. Aside from anything else, the air we were breathing couldn't have been good for any of us. At the time, however, all I knew was that we were a family, an American family, and while the world would go and get complicated soon enough, right then it was simply the place we needed to be, the place that a short year before had become a cherished memory and was now smashed to ruin. I didn't know if any of us belonged there, but if we did, we all did.

It wasn't until we started to meet with crowds of people that I began to get a better understanding of why Schuyler needed to be there. People stopped to admire her, a great many of them, and she dutifully and with great cheer delivered her standard "cute baby who never cries or shits or does a thing in the world wrong" routine. She had no words, of course; she was almost two years old, but small for her age. No one seemed to expect her to speak, certainly not in this place where words were too small.

The next set of police lines marked the edge of where we were allowed to go on foot. Beyond these, only residents and rescue workers were allowed. Periodically, one of the cops moved a barricade long enough for a big truck to roll through, its flatbed trailer piled with sadly recognizable twisted metal. Schuyler and I had touched that metal the year before, although the base of the towers where we'd laid our hands against the cold surface wouldn't see the light of day for weeks or even months.

It was here that Julie hesitated, perhaps sensing the horrible It that lay just out of view. She was more quiet than I'd ever seen her. As I stood waiting for her, I felt a tug on my jeans. I looked down to see Schuyler smiling up at me. I bent down to her level.

"How are you doing, monkey?" I asked her. She reached out to hug me, which she'd been doing a great deal lately. The gesture carried all the meaning in the world to me, although probably no more to her than "Thanks for bringing me here instead of another boring night at home."

A policeman walked up to us as I held Schuyler. His face looked drawn.

"It breaks your heart, don't it?" he said. "I've got two kids at home, and..." He stopped abruptly in the midst of miming a hug, unable to continue. He looked back down the street at the lights and the smoke and shook his head. I told him about Schuyler's previous visit to the World Trade Center and how she touched the towers. As I spoke, another truck rolled by, carrying the huge, twisted steel beams. Some of them were actually flattened in spots. They looked like rubber bands.

"It must break your heart every time you see that," I said to him. "Every time," he replied quietly. We told him how proud we were of him and his fellow officers, but his thanks was muted; he was somewhere else in his heart, somewhere a few blocks away.

Beyond the trucks shone the lights. Bright lights, and cranes, and slowly boiling smoke tumbling lazily from what lay beyond. We'd reached the corner of Greenwich and Duane, and the crowd of people was bigger. Before I could see past them, I saw them taking photographs, and I saw their ashen faces. I looked down the street, and for a moment, my eyes weren't grasping what they were seeing.

At first I thought I was seeing tall, darkened buildings, but the smoke poured out of them, slowly and persistently. Something else was wrong, too. The lines of these buildings were wrong. There were no straight lines, just lumps. When I looked closer and saw the jagged beams sticking out, I realized what I was seeing. Julie had already figured it out; she turned away, finally giving in to her tears. Not delicate tears, either, but great shuddering sobs. She walked away so Schuyler wouldn't see.

"Oh. Oh. Oh." I said it over and over again, unable to stop or say anything else. I was looking at two piles, the farther one slightly higher than the other. They were impossibly big, rivaling the buildings around them. I'd seen photos of how they looked during the day, but at night they were simply hulking black forms, horrible for what you couldn't see. It seemed impossible that such a thing could ever be removed, that the bodies and the smell and the smoke, this mountain of steel and glass and blood could ever be swept clean. It seemed as unmovable and permanent as the towers had seemed the year before.

Men in hard hats walked away from the scene, their grimy faces unreadable.

A female police office walked up to us, bending down to look at Schuyler, who was thrilled to have someone new to flirt with, having become clearly annoyed with her weepy parents who were sucking the joy out of this adventure.

"Well, hello there!" said the officer. "Look at that smile! You are just like sunshine to me right now!" She reached out and touched Schuyler, who responded with her wheezy, goony laugh, the one we'd first heard here a year before. The officer smiled, but tears were forming in her eyes, big ones. She didn't even wipe them away, she just played with Schuyler and let them fall. When she said goodbye and Schuyler reached out to hug her, the officer closed her eyes and gave herself over to the embrace.

I was suddenly glad we'd brought her with us. There wasn't a thing in the world I could do to make this any better, but Schuyler could. She was sunshine.

We left after that, walking away from the city's smoking wound. I turned a few times to look at it again. Julie did not.

"America when will you be angelic?" wrote Allen Ginsberg. I think about the people who died all those years ago, those faces on desperate, hand-lettered posters and ethereal voices crackling over cell phones. I think about all those souls, all those young lovers and sad lonely people, the greedy and the generous, the pragmatists and dreamers and gentle mothers and rowdy fathers. They were just like me, and probably like you, too. They weren't angelic. None of us is.

Even as I write that, however, I know it's not true. I do know an angel. I watched her bless doomed towers with tiny hands and grant absolution to police officers whose hearts were breaking. Schuyler's an angel and also a bit of a devil, a fragile flower who speaks in a howl. She remains, now as she was then, the reason I give a damn.

September 8, 2011


I've had a piece of music in my head for a few weeks now, and I thought I would share it with you tonight because, well, it's on my mind. That's all. Sometimes that's reason enough, you know?

I poked around online and found a performance on YouTube, of about four minutes of music that is, I do believe, the most beautiful music I know. That's really true, and it's not small praise, either. Not to be too arrogant about it, but I know a LOT of music. Furthermore, my taste often runs toward this sort of big, weepy Romantic stuff, meaning that my head is full of a lot of Rachmaninov and Vaughan Williams and Mahler and Schoenberg (the Gurrelieder Schoenberg, not so much the "I hate you, audience! You must suffer now!" Schoenberg). And yet it's this little four-minute stretch of this little-known symphony that gets to me, and gets to me every single time I hear it.

Most people know Josef Suk, if they know him at all, as a composer of fairly light stuff. His name is funny in a middle-school-boy kind of way, and he looked sort of like a chubby little Hitler. (Not really his fault; he died in 1935.) But his Asrael Symphony was different. It was named for the Islamic Angel of Death, cheerfully enough. Suk began the symphony as a tribute and celebration of his late mentor and father-in-law Antonin Dvorak, but as he was working on it, his beloved wife died, and Suk was plunged into despair.

Buried in the middle of this gigantic, heartbreaking symphony of pathos and pain are the four minutes that I'm sharing with you. (There's more after that four minutes, and the whole symphony is fantastic. You could do worse than listening to the whole thing.) And if I played it ten times in a row tonight, I'd find myself teary-eyed ten times.

The thing is, for some reason I associate Schuyler with this music. When I listen to it, I hear pain and I hear longing and love and regret, sadness and joy stuck together like red and blue Play-Doh, forever infused but not assimilated. I hear these emotions all at the same time, as if the yearning and the love is answered by the regret and the pain mid-phrase. All those emotions, all swirling together, not mixing, not resolving, but just existing together. There is sorrow, and there is happiness floating on top of those sad waters. Or maybe it's a sad boat bobbing on the surface of a happy sea.

And now that I spell it out like that, suddenly my association with this music and my sweet, mostly joyful but sometimes sad, broken but perfect Schuyler isn't so inexplicable after all.

September 4, 2011


It's an odd thing, to be the guide and protector of the strongest person I know.

Schuyler attended a band event this week, held at a local video arcade/mini-golf/go-carts place. The kids were set loose with a cup full of tokens and free reign over the place. It was a nice gesture by Schuyler's new band director, and the kids seemed to have a good time.

There were a number of parents in attendance. We went because no one, not us and not her band director, was certain how Schuyler would do in a setting like that. It felt a little early to just throw her into the mix. But after playing a few games with her, we held back, went to another room and just waited. We watched her try to step up, and to make connections.

She tried. She was awkward, but she tried. After wandering the arcade for a while, looking for someone to play with her, she made her way to the laser tag room, where a bunch of her classmates were being divided into two teams. I watched her disappear into the dark.

When she came out later, I detected a change. And here's the thing that's hard to explain, and yet it's maybe the most important part. When Schuyler came out of the laser tag room, she wasn't defeated. She came out alone, and she didn't try to talk to anyone else, but she wasn't upset, not exactly. We asked how she did, and she gave a thumbs up. She then asked for more tokens and we sent her back into the mix. After a while, I slipped into the arcade and hung back in the shadows. I just wanted to see how she was doing.

Schuyler wasn't interacting with anyone. She wasn't trying to connect. Whatever happened in the laser tag room, it convinced her to retreat back into her private world. I watched her play games, alone. But again, she wasn't dejected. She played a motorcycle game until she was out of tokens, and then she came to find us. When she saw us, she gave us a little smile.

"Did you find any friends?" Julie asked her, even though I guess we already knew the answer.

Without really looking at us, Schuyler just said, "I'm fine." She repeated it a few times.

Her tone suggested that she didn't want to talk about it, so we didn't. We took her outside and played some miniature golf, and the evening ended as a family outing. After the three of us got away from everyone else, she perked up. She said she was fine, and she meant it.

Schuyler wants to be like everyone else so much, and it breaks my heart. I see how hard she tries to make friends with her neurotypical classmates, and I see how they walk away from the effort. I don't think they're mean to her, not exactly. Maybe they just don't know what to make of her, like so many before. Maybe they aren't sure yet if it's cool to be friends with the strange girl. I don't know.

I've shamefully confessed in the past that I often don't care much for neurotypical kids, and I'm not always much better with their parents. It's tricky, because we really do stand apart in so many ways, and when I see what their worlds are like and the (to me) alien obstacles they face, I have to really fight off resentment. Is that awful? I think it must be.

I watch Schuyler's neurotypical classmates walk away from her and I think "Wow, random NT child, you just missed a shot at getting to know the one kid in the room who is truly unique." I feel like if the rest of the neurotypical world would just stop and try, they'd discover a friend like none they've ever had before, and their lives would be transformed by Schuyler, as mine has. There are a handful of people in the world whom I would say have really gotten to know Schuyler, rather than just the idea of Schuyler. They've stuck with her for the long haul. And I think it's fair to say that every one of them feels enriched by the knowing of her.

But kids don't think like that, not at this age. A lot of adults don't either, actually. A lot of people are missing Schuyler, missing out on the chance to enter into an authentic relationship with her, on her terms and in ways that make her happy and make her grow. Well, school's just started. I think perhaps they'll catch on.

And so she retreats, head held high, and she plays alone, or with us. Mostly she plays alone. She doesn't seem happy about it, not exactly, but she does seem to be at peace. Schuyler has a back-up plan, it seems. Her world may be a little lonely, but it's cool. She's cool, too cool to wait around for admittance to a world that is frankly a little grey compared to the one she constructs and reconstructs.

We talked this evening as she got into bed.

"Do you like school?" I asked her.

She nodded her head and said, "A little." She held her fingers slightly apart.

"Are you making any friends?"

"No," she said, but then changed her mind. She held up two fingers. Schuyler has made two friends, or so she says. I met one of them this morning at her Miracle League soccer game. He's in her special ed class at her school. He's impaired, but even without clarity of expression, he made it clear that he genuinely likes Schuyler.

"Are you happy?" I asked her.

She gave her little secret smile and said it again. "A little."

I don't know how happy Schuyler is, exactly. Not all the time, anyway, and certainly not when she finds herself standing alone, as she does so often these days. But she seems determined to keep moving. Not like a shark, exactly, because she's easily the least predatory person I've ever known. Schuyler keeps moving like a hummingbird. She is always in motion, always searching for the prettier flower, the better place, a happier world with sweet nectar and loyal friends.

Hummingbirds don't seem strong. They're fragile, but they never stop. And in their perseverance, we see their genuine strength.

August 31, 2011

Push and pull

"Have you ever found a term for our super kids that doesn't piss you off Robert? Since there are times when we need to call them what they are (Special needs, Differently-abled, handicapped, whatever)."

It was a fair enough question, although it started from a false premise. I don't believe I've ever stated that I "hated" any identifying terminology, aside from the word "retard", and I hardly think that's exactly crossing the line into oversensitivity. The above comment was made in response to a joke I'd made about the term "differently abled". Most of us who spend time in some way in the world of disability tend to engage in a little dark humor; some very pointedly do NOT. I made a joke about "differently abled", the same one I've made before about how it sounds to me like we're describing toddler superheroes ("I can fly!"), and it pushed someone's buttons.

Which is fine.

It's fine because we're not all the same, we're not even close. We call ourselves a community, but as I've pointed out before, we don't actually agree on all that much. We don't agree on terminology. We don't agree on whether special needs kids are better off in segregated special education classes or in total inclusion, or something in between. We don't agree on cochlear implants or vaccines. We don't agree on whether kids with developmental disabilities need as much help as they can get in order to try to make it independently, or if they're fine just the way they are, or if they're fine just the way they are and yet should somehow be able to live independently in this rough world. We don't even agree on who gets to claim membership in this "community".

So no, we don't agree on much, and again that's fine, because all of our worlds are profoundly far apart. Creating a real community with common goals might just be too much to expect. I can see that now.

As a neurotypical parent, there's only so much that I can expect to understand about Schuyler's internal world. That is equally true, however, of even the world's most experienced educators or the most brilliant doctors and therapists, and it's true of observers with chronic conditions and of self-advocating persons with unrelated disabilities like autism. It's particularly true of those who have never met her, but it's often true of family members, too. Schuyler's inscrutability is true of those passing-through people who meet her once or twice, whether they realize it or not, and of all but a very few close friends (and they know who they are, I hope). Perhaps other kids with bilateral perisylvian polymicrogyria might have some insights, but, if you'll excuse the phrase, most of them aren't talking. And even if they were, fancy medical types who Know Such Things have declared that Schuyler's particular manifestation of BPP is very likely unique.

So perhaps she is ultimately unknowable, but Julie and I don't accept that, and shame on us if we ever did.

It's a foggy world, and we try to enforce some kind of order on it, because one of the more disquieting aspects of disability is the chaos, the unknown. Kids like Schuyler experience the world very differently from neurotypical children. Sometimes they are unaware of this difference, but others know it. They know it, and like Schuyler, some of them push back against it and try to fit in, try to pass even as we try to convince her that she doesn't need to. Well, try to convince ANY eleven year-old girl that she doesn't need to fit in with her middle school classmates and see how far you get. But other kids who understand that they are different, some of them similar to Schuyler and others with disabilities but entirely UNlike her, they reject the impulse to fit in. Some don't even feel that impulse at all.

Parents of kids like Schuyler also live in a world of chaos. We struggle with the push and pull. We're responsible for our children and yet we're making up the rules as we go along, rules which disintegrate like cigarette ash when circumstances dictate. As I said recently, we stand astride two worlds, that of the neurotypical (which we try but fail to educate about our kids) and of the disabled (which we can try to understand ourselves but can only do so from outside, as the most interested of all interested parties). And our dirty secret is that in standing with a foot in each of those worlds, we don't actually fit into either of them very well. As time goes on, we fit less and less, not more. But through entering into authentic relationships with our broken children, we do achieve a kind of understanding, and we are enriched and enlightened by the experience, so in the end, we are richer for it. It's a tough life, but we're privileged to be a part of it. Sometimes we find a little peace.

I know, by the way, that I lost a few of you there when I said "broken". And once again, that's fine. Of all the terms I have used over the years, that's the one that has earned the most comments. But here's the thing. Those comments have always, ALWAYS, been pretty evenly split between Team "How Dare You" and Team "That's It Exactly". More importantly to me, I've heard from quite a few members of Team "'Broken' Is How I Self-Identify". So I keep using it, because it describes what I see and experience with Schuyler, in a way that holds equal measures of pragmatism and hope. If Schuyler ever asks me not to use it, I'll stop.

More and more frequently, I find that our fragmented and underpowered community trips itself up on terminology. We establish the words that work for us, we insist that others use our language, and we fly our Flag of Offense when we are denied. I guess that applies to the whole "R Word" debate in some ways, although I still feel that if you are adamantly defending your use of a word that is so widely accepted as derogatory and which makes persons with developmental disabilities into the defenseless butt of your ugly humor, you're probably not so much a Warrior for Free Speech. You might just be an asshole, and probably need to come to terms with that.

Having said that, I have a confession to make. I kind of wish I'd never written about the "R Word". I sometimes wish I'd obeyed the little voice that whispered in my ear that it wasn't a place I wanted to go. Not because I don't believe in the cause, because I do, very much. But I never wanted to get branded as someone who thought a word should be "banned", or that every time it was uttered by a dumb teenager or an entitled hipster or a sports figure tragically planted in front of a microphone, I would be expected to raise that Flag of Offense and charge into the fray. I just wanted people to understand the word they were wielding and exactly how many people were hurt when they used it, even as my own understanding of its power was limited to my own experience as a parent and someone who loves Schuyler ferociously. It's a battle worth waging, but I'm not sure I was ever the right person to take up the cause. I don't know. I'm sorry I did, but I'm glad I did, too.

Not every squabble over terminology is so clear cut as "Don't call people retards, seriously." There are many ways to approach the issue of word usage, I suppose. We could insist on the use of People First Language, for example, but despite what you may hear or read (and GOD, you will read the claim if you consult Dr. Google even a little), People First is NOT universally accepted. I've written about my own negative feelings concerning People First, and there are others who have written at length, including many persons with disabilities. People First Language is a well-intended concept, and it works for a lot of folks, but where I believe it fails is in its insistence on universality.

Truth is, there is no universal perspective on disability. We can't even agree on what to call our kids. The special Toys-R-Us catalogue that I was discussing when that earlier comment was made referred to our kids as "differently abled". And if that works for you, that's fine. (How many times have I said "that's fine" already?) I don't feel like Schuyler is differently abled, though. She doesn't have abilities that are different from anyone else's, not exactly. She uses a speech device and employs some sign language as needed, but they're not inherent abilities that have organically grown out of her disability. Those are skills she's picked up by necessity, and she's not much of a prodigy at any of them. She uses them well enough to suit her needs, and that's enough. Her abilities are purely human, and some of them are broken. She can't talk, much less fly. But she can communicate, and she works harder at it than I do. Or you, for that matter.

She's not differently abled, but she does do things very differently, and that's what ought to be celebrated. Schuyler began with no verbal communication, so she developed her own manner of expressing herself, and that manner is extremely physical. Schuyler doesn't speak like you or me, but she communicates in her own perfectly Schuyler way. She verbalizes as effectively as she can, and sometimes it's not bad at all. But she also touches, she mimes, she hugs and hangs onto her loved ones. She invades the "personal bubble" of her classmates, much to their consternation, which is an issue we're working on. It's hard, though. Schuyler tugs at you insistently when she wants to show you something. Perhaps if she had the voice, she would just tell you about it instead. But most times, I'm happier to have her pull me, show me, to express her love and her happiness with hugs and kisses and imploring looks and flappy hands and her goofy laugh. Most times, I think maybe words alone would be boring.

Is Schuyler "differently abled"? Is she "disabled"? The hated-by-all but used-by-all "special needs"? "Broken"? "Neurodiverse"? Does it make a difference what she is? Do the inadequate words we choose really matter all that much as we try to grasp the imperfections that make up our loved ones, or our very selves? Yes they do, and no they don't. And we have to find a way to be okay with that.

As for Schuyler, I might just be wrong. She CAN fly.

August 27, 2011

Hamster Science

Describe the differences between a transverse wave and a longitudinal wave.

If our Sun were a high mass star, what would be the eventual outcome of its life cycle?

Essay question: What would happen to our body's absorption rate of the intestines if villi had no microvilli?

There are a lot of things in this world that I do not know for sure. I'd say that most items fall under that category. So here are a few of those many things that I do not know for certain.

I can't say whether or not any of the above topics, which came home in Schuyler's classroom notes this week, would be within her grasp if she'd had a better mainstream classroom experience in the past, particularly last year. I can't claim that her mysterious and troubled brain would have the capacity to make sense of the material that she is now being handed in middle school if things had gone differently in her last few years in elementary school. And I can't say with any degree of certainty if things would be any different for her if the school district diagnostician hadn't informed her entire IEP committee two years ago that she wanted to retest Schuyler's IQ in order to have her labeled as MR, the range that she anticipated as the result of that test. I certainly can't state definitively that just making that observation subsequently informed, however subliminally, the way Schuyler was taught after that meeting.

What I can say for certain is that Schuyler's position in her mainstream class last year appears to have been akin to that of the classroom hamster. She was cute, she was friendly, she was tidy and she was helpful to the teacher. Remember, that was the extent of that teacher's evaluation of Schuyler's academic progress at her IEP last spring. Nothing about how Schuyler performed academically, and certainly not a word about strategies for teaching her. I don't know if there even were any strategies in place. If so, they appeared to be a trade secret.

And you know me. I love hamsters. I just sort of thought I was done raising them.

So that's the bad news. Here's the good news. Schuyler has all new teachers now. None of them were there two years ago when the diagnostician came right out and said that she believed Schuyler fell within the MR range and planted that seed. They'll find out soon enough that Schuyler isn't going to wax philosophical on transverse waves any time soon, but they won't have the whisper of "Don't bother, she'll never be able to do that" in their ears. And she has a special education team leader who appears to believe in Schuyler and whom I believe will advocate aggressively for her.

I don't know much about the outcome of the Sun's life cycle, either. I'm more concerned about the life cycle of my daughter. Its quantity, and most of all its quality.

August 25, 2011

Just a Word: Smarty-Pants Edition

The National Society of Collegiate Scholars has teamed up with Special Olympics for a new public service announcement. The NSCS provides scholarships to students who are in the top twenty percent of their class. They have more than 700,000 members from over 270 colleges in all fifty states and Puerto Rico (you lovely island).

The take-away message might be "Smarty-pants people don't say 'retard'. So don't you do it, either." I can get behind that message.

August 22, 2011

Independence Day

Okay, so I'm breathing again after a somewhat anxious day.

Schuyler survived her first day of middle school.

She seems to have done more than survive, really. She apparently had a great day. She jumped off the bus in a great mood, and was telling me about what they did in her band class before we even got the door open. She said she had a little trouble with her locker and needed some help, but she'll get it. She's already opened it a few times all on her own, after all, and she doesn't like to lose. Her lunch bag still contained the food she was too excited to eat at lunch, including her chocolate pudding, people. Chocolate pudding. She left pretty much everything at school that she was supposed to bring home, except Pinkessa, but otherwise she seems to have nailed all the big stuff. When I asked her how she did, she said "I listened to my teachers very carefully." She is trying very hard to get this right.

We've had a lot of anxiety about Schuyler going to middle school. The truth is that she's eleven years old, but she presents much younger. Schuyler has a developmental delay, but that doesn't tell her whole story. It's hard enough to track her intellectual growth, but Schuyler is also emotionally... naive is perhaps the best word. She's very sensitive and wants to help, to the point that she often invades personal space. She tends to play with kids a few years younger than she is, which worked out well enough in elementary school, but in middle school, she's among the youngest.

But it's not that simple, either. Schuyler is also very adaptable. We saw it last week at the school's open house. Schuyler is extremely sensitive to the behavior of those around her, and when she found herself surrounded by kids older and more mature than herself, she stepped up and she worked to fit in. I believe that's probably what she did today, too. Middle school might kick her ass a little, but it may just finally provide the incentive to grow up a little, too. Not too much, I hope.

There's an undeniable truth about Schuyler. She is mostly uninterested in embracing a world of neurodiversity. She wants to be like everyone else, and while we try harder than anyone really knows to celebrate who she is on her own terms, Schuyler works hard to walk unimpeded in a neurotypical world. She understands that she's different -- she's said as much -- but she also knows that she can pass for typical. I've written about the unique challenges of invisible disabilities, but Schuyler wouldn't have it any other way. I don't know how much success she'll have, and I suppose on some level she may be doomed to fail, but if anyone can do it, if any kid with a developmental disability can make her way through our world, it may very well be Schuyler.

At the open house, I watched her find friends and make a few new ones. I watched her as she puzzled out her locker, and I saw how she mapped out her classrooms. She memorized all the numbers she needed, and she did so without one bit of help. When confronted with a world of kids who are older and more independent than herself, Schuyler stepped up. I think she might just continue to do so.

Those of you who have been reading me for a while, particularly those who have read my book, you understand exactly how much it means to Julie and myself that Schuyler might one day be able to live independently. Entirely independently, too, self-supporting and on her own terms. Middle school is going to be a big part of that for her. She's got accommodations in place to help her. She's got assistants in most of her classes, except for PE and band, and she's got her medic-alert tag and a luggage tag on the little backpack that she uses to carry Pinkessa, so she can quickly tell people what they need to know. She's getting help.

But at the end of the school day, she gets on a bus and comes home. She'll have a key to let herself in if she needs to. As far as anyone who's casually watching knows, Schuyler will be the thing she dreams of being the most. She'll be just another kid.

August 20, 2011

Schuyler answers

Okay, so she didn't answer every question that was sent to her; she sort of ran out of gas, attention span-wise. But I think she got the bulk of them.

For those of you interested in how this worked exactly, I asked Schuyler the questions and she answered them directly. I only assisted her with grammar when she asked for help, and then I would point out what she got wrong and let her figure out how to fix it.  (When there are caps or exclamation points, those were very specifically dictated by Schuyler. She can be particular.) She mostly used her speech device (which she calls Pinkessa), but also answered verbally when she could and used sign language very occasionally. This is how communication with Schuyler works; using just one method would be very strange for her.

When couldn't entirely put something into words accurately, she was able to mime it out for me so I understood. Once again, she illustrates both the frustration and the weird beauty of how she communicates. It takes some work to learn Schuylerese, but it can be pure poetry when you get it.

How did you finally manage with your locker at your new school?

It's hard, but I can do it now. I like my new school and my new teachers and my new friends. We are the purple hogs!!!

Rate your dad's current facial hair on a scale of "awesome" to "embarrassing".

I liked it a lot. Daddy looked like Santa Claus.

Schuyler what would be your idea of a perfect day?

I like to go swimming with my dad and mom.

What do you like most about your dad? What is your favorite movie?

I liked the mustache. Daddy is so funny. King Kong, Coraline, The Iron Giant.

What are you most looking forward to about school this year?

I like to play the big drums. I want to make new friends.

If Godzilla and King Kong had a fight who do you think would win?

Godzilla. He has things on his back and shoots fire.

If you were going to make a movie, what would it be about?

I would make a movie about mermaids who have powers.

What is your favorite song and why?

Lady Gaga, Telephone. I like it A LOT!!!

Do you think of yourself as different? And what makes you different?

Pinkessa is different and I am too. I can't talk.

What is the one thing you want everyone to know about kids who may be different?

We like to play and have fun. We don't like pointing and mean people.

So what is Rob REALLLLLY like?

He is funny like a clown!!!!

What is the funniest thing your dad ever did?

He said I had a tail.

Have your parents signed you up for Girl Scouts yet?

No. I want to go. I want to camping and sell cookies.

I'm just slightly older then you and i think you are fantastic!!! What do you want to be when you get older?

I want to help sick people and also I want to be a police woman.

Hi Schuyler-what are some things that make you happy?

Daddy and Mommy and Maxie and Lulu and Petey and my mice and Squinkees and LaLa Loopsies. And that's it!

Do you like it when your parents help people understand what you're saying or try to explain what you're thinking? Or is it annoying sometimes?

Yes, I can't talk and Daddy and Mommy know what I saying.

Do you feel like a special, famous kind of person, being the subject of a book and a blog? Or do you just kind of ignore that?

I don't care!!!!!

I'd like to ask if she's offended by the word "retard" when it's used by people to make a joke or poke someone else. Also, I'd like to know if she thinks Justin Bieber is a tool.

I don't like that word AT ALL!!!! It is a bad word! I don't like him at all!! He's not my boyfriend!!

You've got a wonderful fashion sense, and I would like to know - what are a couple of things that you are excited to wear to school? Do you like tights and tennis shoes or boots? Do you prefer skirts or pants?

I like skirts and dresses earrings and I want some new boots. I want purple hair again.

Tell me about the your biggest accomplishment so far. What do you want to be when you grow up?

I flew an airplane. I want to be a pilot.

Schuyler - tell us something your daddy does that is super GROSS!!!!!

He farts! (Note: She's a hypocrite...)

Schuyler, if you could do anything in the world, what would you choose to do?

Have fun with my dad and my mom.

Ninja, pirate or dinosaur?

Dinosaurs are my favorite.

What's your favorite nickname?

Daddy calls me Schuyler Bear and I like that. I don't like Chickenhead Jones!

If Schuyler could have any super power, what would it be?

I would be a water bender. (Note: That's a reference to the Avater/Last Airbender tv series.)

Airbending Schuyler art by Crystal

If you could have any three pets, what would they be?

A cat, a turtle, and a bird.

Are you dressing up for Halloween? What is your costume going to be?

Medusa! We are making a snake hat!!!

Do you think you'll ever have your own blog? If so, what would you write about?

I will write about swimming and flying airplanes and school and band and my friends and Daddy and Mommy.

Do you like video games? Which ones? I like Nintendo and really old games.

I like Sports Resort and Mariokarts!!!!

Hi Schuyler! My son, Ethan, is 6 and has a Vantage Lite like yours. He picked black, though. We are having trouble figuring out what to call it. Do you have any ideas?

You can name it Max. Max is a name for a boy.

Do the kids at school ever pick on you? If so, why do you think they pick on you and how do you answer them?

Yes. They're mean and not friends!!!! I tell them I don't care!!!

I visited Plano last summer and I got super excited when I saw the Purple Cow, because I remembered it from this blog. I didn't get to try it though :( When I visit Plano again, what's the best thing to get at the Purple Cow?

I like to eat mint chocolate chip ice cream!!!!

Hi Schuyler! What's your favourite story?

My favorite book is Don't Kiss the Frog!!

If you could either fly or be invisible which would you be and why?

I want to be invisible and I don't want bad guys get me.

Hi Schuyler- You might remember us from the Apraxia Walk-a-thon in 2009. You walked and played with my daughter Ava. She is 5 yrs old now and she is getting the same Big Box of Words as you have. Here's my questions:

1. Was it hard for you to learn how to use it?

No, it is so easy! Mrs. Williams helped me to learn Pinkessa.

2. Do you like using it, or do you like signing better?

I like Pinkessa better.

3. When other people ask why you can't talk, what do you wish you could say?

My brain won't let me talk. I have Pinkessa to help me talk.

What is the toughest thing about not being able to talk? Do you ever wish you could just tell people what you think?

It's hard when people ask me questions. Yes.

Hi Schuyler! I am a future speech language pathologist and wanted to ask about Pinkessa :)

When do you use it most?

At my school.

How would you change it so that works best for you?

Make it give me a voice.

(Note: She had a hard time with this one, not because she didn't have an answer but because she didn't know how to put it in words. This is a case where being with her in person helps. She indicated with her hands that when she says she wants it to give her a voice, she means that literally. She wants the device to enable her to physically speak for herself with her own physical voice. I never knew that until now.)

What do your parents do that embarrass you?

Daddy calls me Chickenhead Jones!! Mommy poots!!