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!!

August 17, 2011

Ask Schuyler

I got involved in a discussion on another site concerning self-advocacy versus parent advocacy that was interesting for about an hour before we all became angry and entrenched.  Well, what are you going to do?

Anyway, as a result of that discussion and its spinoffs on Twitter and Facebook, I asked Schuyler if she would like to actually say something herself.  She didn't have anything she particularly wanted to express, but when I asked her if she'd be willing to answer questions that other people submitted, she was in.

I've already gotten a few on Twitter, and I think she's going to begin answering those after her lunch date with Chef Boyardee is over.  But if you would like to ask Schuyler something you can do it in the comments, on Twitter or Facebook.  Or email me if that's how you roll.  I'll post her answers tomorrow.

Update: Well, "tomorrow" is going to probably end up meaning "Saturday". Apologies, but we got busy with life. I'm kind of okay when that happens. Anyway, Saturday looks like a good day for questions. See you then.

August 16, 2011

The Calculus of Overbelieving

So there we were, the three of us, in Target with the school supply list from Schuyler's new middle school.  There weren't any particularly horrific items listed (no $1300 marimbas, for example), but one item gave us pause.

The scientific calculator.

It wasn't terribly expensive -- about ten bucks -- but we have a pretty good idea of what Schuyler is capable mathwise.  We also knew that Pinkessa, her speech device, has a scientific calculator on it.  We had a pretty realistic sense of how frequently this ten dollar scientific calculator was likely to ever be used.

And we bought it anyway.

In the end, it was an easy choice, once we talked through it a bit.  We'll burn ten dollars rather than try to reconcile being the parents who decided that our daughter will never be capable of using the same calculator as her classmates.  We'll spend that money that we could certainly use elsewhere so that Schuyler has the same calculator as everyone else, rather than the one on her speech prosthesis, the device that gives her a measure of expressive freedom but also reminds the world "I'm broken."

Sometimes overbelieving means spending money for a principle, one that says Schuyler should start off the year with the same tools and the same possibilities as everyone else.  It's the same reason we politely declined the school's offer to give her a special locker without a lock on it, despite the trouble she had with the one that was assigned to her when we tried it at orientation.

She begins middle school next week, and I'm terrified for her.  I have less faith in the decisions we've made for her that led up to this point than ever before.  The fact that I'm even writing about this might be a good indication that I'm overthinking as well as overbelieving.

Well, anyway, there it is.  Schuyler has a calculator now, one that those of us who know her best can scarcely imagine her using.  But it'll be there, sitting in her bitch of a locker, if she needs it.  We can do that much for her.

Also, she found a pink one.  Well, of course she did.

August 15, 2011

More in common

Image courtesy of Support for Special Needs

As I mentioned last week, I was privileged to speak to the BlogHer '11 Special Needs Mini-Conference in San Diego. If you'd like to read what others have to say about it, there's a page at Support for Special Needs where a number of blogs are listed. I'll keep my own comments brief since I was a participant and probably ought to keep the "Gosh, I was swell!" remarks to a minimum.

(Incidentally, there's also a transcript of sorts, but be warned: it reads VERY oddly, like something translated into another language -- Martian, perhaps -- and then back into English. I sound as if I suffered a head injury shortly before the panel. To the best of my recollection, I did not.)

I will say that my fellow panelists, Aurelia Cotta and Shannon des Roches Rosa were amazing. Both were poignant and intelligent, and happily made it a bit more difficult for me to speak intelligently. (If Aurelia was the heart of the panel and Shannon the brains, I guess I was the mouth. This will come as a tremendous surprise to exactly no one.) I keep hearing rumors of a soon-to-be available podcast, which I will post if such an animal actually steps out of the woods in the near future.

These kinds of conferences serve as important sources of information, as I've learned over the past few years. And this one was no exception. But I think the real value of the Mini-Con, especially for someone who has never attended a gathering like this, can best be measured in the unexpected sense of community they find. There really is strength in numbers, but only if you have a real understanding of exactly how many people are in the same boat with you. The crushing sense of isolation represents an almost universal experience for special needs families, and it really can be the thing that ultimately destroys our spirits. Something like the Mini-Conference gives us all a chance to share experiences and stories. On a visceral level, it gives us the chance to simply occupy the same space, to breathe the same air as others who well and truly get it. It's impossible to quantify just how powerful that experience can be, and how deeply it can change how we approach our lives and the lives of our kids and loved ones.

Advocacy begins in places like this. Disability advocacy in particular starts small, in communities based on specific diagnoses. Those communities grow, but not equally, and even the larger one are, by their very specificity, limited in what they can accomplish. I have stated, both here and in public appearances, that I believe the fight for disability rights, particularly in the hearts and souls of our typical fellow citizens, will constitute the next great civil rights movement in this country. And I believe that, with all my heart. But for that to happen, all of our little communities of need will have to become a unified group. We must embrace the idea that the rising tide really can lift all our boats. More to the point, the retreating tide can and very probably will leave us all stranded in the mud.

In looking for a way to create this unity, it makes sense to look for organizations who are already in place and already have a structure and a reach that can be utilized. Special Olympics has that structure, but I'm not sure they are a good match for the strong, entitled and impolite brand of advocacy that I believe will be necessary. Special Olympics focuses on a very specific and very positive message, and I doubt they want to stray very far from that. Which makes sense, honestly.

I think BlogHer might be a better fit, honestly, and I sincerely hope they are willing to keep moving forward with us. They provide an excellent and extremely high-profile platform for our advocacy, and I think we grant them a measure of depth and gravitas that serves them well. I am hopeful that a meaningful partnership will continue to build with BlogHer.

A hashtag grew out of the post-BlogHer discussions: #moreincommon. It also serves as a mantra for Support for Special Needs, the idea that as persons with disabilities and their families, caregivers and advocates, we have more in common with each other than that which separates us. I am obviously on board with that concept.

But I'm going to suggest that the real commonality isn't between all the different flavors of our very diverse disability community. It's between us and YOU. Those of you from typical families, those for whom all of this might feel like someone else's struggle, you are part of this, too. You simply must be. Our kids, our families, they need you to be. For an authentic sea change to occur in our society about how disabilities are perceived and how our children's humanity is recognized, you have to be on board.

And here's the thing. You WANT to be. This cause is on the right side of history. You want to be on the side that is marching on behalf of these folks, voicing the advocacy that so many of them are unable to voice for themselves. You don't want to find yourself, through apathy or outright opposition, with the modern-day equivalent of the mob with the water hoses and the bitey dogs and the clenched fists, shouting "No, you're a burden on us. Go back to the shadows." And we don't just want you there with us. We need you. This is your call to arms, too.

Entering into authentic relationships with those of your fellow citizens who seem to be the least reachable and who maybe even challenge your own feelings about what it means to be human, that's an opportunity to grow that you can't afford to walk away from. Our kids have a lot to gain by your participation, but if you are willing to really explore the things we all have in common, I promise that ultimately, you will have benefitted the most.

August 9, 2011

Just a Word: The Change-Up Edition

(Note: After some private and refreshingly non-shouty consultation with persons more familiar with the particular issues surrounding self-advocacy by persons with disabilities, I can see now that this wasn't a terribly well-written post. In particular, it lacked inclusivity, which, given how hard we've worked to create an inclusive environment for Schuyler, was a particularly obnoxious oversight on my part.

I hope that the larger point I was trying to convey isn't lost. Regardless, I apologize to those who felt slighted by my limited perspective. Like any other parent advocate, I stand astride two communities, those of the neurotypical and the disabled, and I don't always feel like I fit in or represent either one of them all that effectively. But I do try, and I will continue to try to improve.)

Well. Let it never be said that the entertainment world isn't committed to providing material to blog about.

From "The Change-Up", from Universal Pictures

Mitch Planko (Ryan Reynolds), about his friend's twin babies: "Why aren't they talking? Are they retarded? This one looks a little Downsy."

Let's dispense, for the moment, with the usual debate about freedom of speech or how comedy supposedly works or whether or not anyone needs to lighten up or pull a stick out of their butt. Instead, let's write a story. We can even pretend it's fiction.

Imagine a parent with a child who has Down syndrome. I actually have one in mind, a strong and positive writer whom I've become friends with over the past few years. But you probably have your own friends or acquaintances you can imagine.

So let's say it's a mom, one who spends her days, her years, taking care of a child, a very special child in every sense of the word. She loves this child the way most special needs parents love our children, which is to say, with equal parts gentleness and ferocity. She understands what the lesser of her fellow citizens of this rough world thinks of her kid when they see the evidence of disability stamped on a child's face but don't bother to look beyond. Perhaps she knows better than most how this attitude diminishes the shallow observer, not her child. Maybe she's found that peace.

Let's imagine that this mom likes comedies, and not just polite ones, either. Like most special needs parents, she probably engages in quite a bit of dark humor herself, the jokes and remarks made to her spouse or other special needs parents and no one else. She appreciates edgy humor, and she liked The Hangover, so when a new movie by the same writer comes out, she decides to take a few hours out of her weekend and go see it.

Perhaps her husband watches her child for her while she's at the movie theater. It would be nice if they could go together, but that's a luxury that's not afforded to every special needs family. If she's single (as so many special needs parents are; about 75% get divorced, according to a recent study), she's had to find a babysitter. This simple act for a typical family is one fraught with anxiety for the special needs parent. Qualified babysitters are hard to find; trust is even more difficult to build. Perhaps a member of her family will watch her child, but that's not a given, either. Many special needs parents have family members who don't get it, who have declined to watch our kids or who have made statements that we'd expect from fussy old ladies at the grocery store. (For me, it's always the old ladies, and it's always at the store.) So a family babysitter isn't a given, either.

But however it happens, our imaginary mom finds a way to go see The Change-Up. She's there, sitting in the dark, laughing at the movie, enjoying herself and pushing down the guilt, that feeling of abandonment that we feel when we dare to spend time doing something for ourselves. Perfectly reasonable, this time away, yet it's hard not to feel as if we've left our child unprotected somehow.

That feeling of leaving her child undefended suddenly swells when she hears it. "This one looks a little Downsy." Our imaginary mom is suddenly confronted with a room full of people, laughing right along with famous faces on the screen, in a multi-million dollar production worked on by thousands of people, approved by studio executives, writers, actors. All those cinema professionals, and none of them, NOT ONE, ever said "You know, we're making fun of purely innocent, absolutely blameless people here. We're making a shitty joke about people with disabilities, people who are brothers and sisters and sons and daughters of the moviegoers who are going to pay money to see this film. That strikes me as a dick move. Maybe we shouldn't do this."

Because this simple recognition of the absence of basic human dignity has not occurred to any of the decision-makers of this giant Hollywood production, our imagined mother sits alone in the dark, and she understands all over again, as if she could ever really forget, that a large segment of society, of the people she walks with and works with and attends church with right alongside her child, this chunk of society finds humor in her child's disability. They think her family's pain is appropriate as a punchline. This mom was right here with them, and does that make her complicit? She thinks maybe it does. Maybe she gets up and leaves the theater in the middle of the movie. Maybe she goes home to her child, feeling more than ever that her place is here, not out there with this great invisible THEM, the ones who will always place her and her child and her family apart.

But if people laughed, I suppose it works out okay when you do the studio executive math.

Again, I'm not asking you not to engage in this kind of humor. It's your soul, after all. You're the one who has to figure out what you're willing to do for a laugh, to fit in with the cool kids, and still sleep at night. But here's what I would like for you to do, if you're asking, which you're probably not.

If I ask you to close your eyes and imagine the kind of person who would casually use the word "nigger" to describe another human being, there might be some variation of the character that any one of you would build in your imagination, but I seriously doubt it would be someone you'd admire. I don't think you'd create the mental image of a person you'd trust your kids with, and I certainly don't think you'd imagine yourself.

When the greater part of society reaches the point where that exercise of the imagination would have the same result with the word "retard", we'll be on our way. That's what I'd like. It really is exactly that simple.

And "downsy"? That's vile. If you laughed at that, please go live in a hut somewhere, far far away from actual human people.

August 8, 2011

In the Company of Women

(written on the flight home from BlogHer '11 in San Diego)

The sun is setting over the Pacific as my plane takes off for home. For the past four days, I haven't hated that sun. The San Diego sun has been pleasant, after all. The Texas sun that I'll see again tomorrow? It wants to kill us all. And it might just succeed.

I'm not going to write about the Special Needs Mini-Conference itself just yet. Those of us who participated in the panel and those who attended have been asked to post something next week, on the 15th, so I'll gather my thoughts and post a more comprehensive something something then.

But I did want to say a few words about the women I met at the conference. Given that it was BlogHer, it was almost entirely women I met, after all. (I walked into the conference center's men's room on several occasions and had it all to my princely self.) There were a few educators at the conference, but mostly, I met mothers.

I met extraordinary mothers.

I see how hard Julie works for Schuyler; I know as well as anyone the rocky pathways these mothers tread. As I met them and heard their stories, I found once again that some of them face monsters that make Schuyler's look like Cookie Monster. I met mothers who face daunting obstacles, mothers who spend their waking hours tending to and sustaining and comforting their beautiful, broken children. Some of them do this work alone, far too many of them, I suspect. I met mothers who have no time, and yet make time, mothers who struggle not just to save their children, but also to hang onto their own humanity, their own sense of self. I met mothers fighting to avoid being swallowed by their children's monsters.

These mothers have every right to be tired, to be ragged and sad and bitter. They've earned that right with their tireless advocacy and their unending work. They fear the future like I do, and that fear can be consuming as well. These mothers have a right to lose their faith.

But here's the thing. I didn't meet ragged, defeated mothers. I met strong women, charming and funny and positive, mothers who recognize not just the extraordinary challenges that their children present, but the enriched lives and unshakable loves that they enjoy for having those kids in their worlds. I spent the day of the conference with a continuous lump in my throat, listening to their stories and their hope and their unflagging overbelief in their kids.

If I were to try to list everyone I met, I would leave someone off and that would be wildly unfair. I do want to recognize my extraordinary fellow panelists, Shannon des Roches Rosa and Aurelia Cotta, as well as Julia "Not that Julia Roberts" Roberts from Support for Special Needs, who organized the event and ran it like Swiss clockwork. Thanks also to the unstoppable Jen Lee Reeves for all your help and amazing energy.

Mostly, I want to thank everyone I met and everyone who attended the session. I felt like something real got started, something significant set in motion. For myself, I can only say that I feel inspired to do better, to be a better parent and a stronger advocate. And that's probably the very best I could ever hope for.

August 1, 2011

Monster Day

Eight years ago, a question turned into an answer. Hope turned to fear, and took a few more years to tentatively turn back into hope. Eight years ago, on a sunny day in New Haven, Connecticut, we were handed the rest of our lives. Eight years ago, the worst and best days of our lives began in earnest.

Eight years ago, Schuyler was diagnosed with Bilateral Perisylvian Polymicrogyria.

Happy birthday, monster. You are still a motherfucker.

July 31, 2011

Strong, entitled, impolite.

Over the weekend, I gave a speech, the closing keynote at the 2011 Angelman Syndrome Foundation Biennial Conference. It was a somewhat different kind of speech for me, more of a call to arms than I've really given in the past, and it was unproven. It seemed to go over well, and I hope I get the chance to deliver it again, but still. I wondered if it was appropriate.

If I'd been paying more attention to the whole debt ceiling debate going on in Washington, and in particular who was increasingly likely to get thrown under the budget cutting bus in whatever deal was made, I would have realized that yes, my approach was appropriate. Appropriate, and necessary. I have a feeling that a great many of us are soon going to find ourselves standing up and throwing rocks at giants.

Anyway, here's a short excerpt from the speech I delivered, the part that feels the most relevant.

Who's going to speak up for our kids?

This is the fight. These are the kinds of things that lurk out there, the attitudes towards a segment of our population that struggles for respect like no other. We simply must make significant cultural and societal changes and acknowledge that the struggles of those with disabilities are nothing less than human rights issues.

This is the heart of our fight, because it extends to every aspect of our children's lives, from the care they receive from the medical community to the seriousness they are afforded by their schools to the resources allocated to them by our political leaders. We've all seen it, time and time again. We've watched our representatives in government approach funding for disability programs and special education as if these are the nice things we can afford when times are good, like luxuries. They behave as if cutting these programs is reasonable, as if life will somehow wait for our kids until the good times return. More and more frequently, I hear these programs referred to as "entitlements", spat like a dirty word, as if our expectations constitute an unreasonable drain on society. And I'm not even talking about this from a partisan position. We've all heard political figures from both parties as they put our children's quality of life on the table while protecting their own special interests. I've come to believe that the term “independent voter” has come to represent someone who is equally appalled at what both parties are doing. I wouldn't be at all surprised to discover a great many of these appalled independent voters in the disability community.

What I have to say to you today is something that you already know. As parents and family members, as caregivers and therapists and teachers, we are the voices for our kids and our loved ones. We are the believers. So much of the world sees our disabled loved ones as powerless, so it is us, you and me, who must be the forces of change. We have to toughen up. We have to stop accepting scraps from the table of human decency. We must be the ones to lift the expectations of society. We have to be the ones to write the narrative of this fight in terms of civil rights, of basic human rights. Our voices must be strong, they must be entitled, and, on occasion, they must be impolite.

I believe in my heart of hearts that in terms of legal protection, in terms of funding in education and adult services and accessibility, and most of all in terms of a fundamental change in the empathetic and compassionate hearts of our fellow citizens, the fight for equality for children and adults with disabilities will be the next great civil rights battle in this country. But for that to happen, our loved ones, the ones who depend on us for so much else, they will need for us to stand up and raise those strong, entitled, impolite voices on their behalf. Are we ready to do that?

I think we are.

July 12, 2011

Rabbit, Run

("Black in White" by Luke Chueh)

Let us take a moment to consider the strange, sad story of how Marissa's Bunny lost its way.

If you want a pretty complete telling of the story, go check out a post on Love That Max. In particular, read the comments, because much of the story plays out there.

(Shannon Des Roches Rosa sums it up very nicely, too.)

The short version is this: Marissa's Bunny tells the story of little Marissa, born in 2007 with a pretty terrible condition called West syndrome, or "infantile spasms". The blog is written by her father, Mike Wuerthele, and over time has garnered quite a following. A lot of people care very deeply for Marissa.

Last year, Mike turned to that caring community for help. He said he needed to raise money for surgery for Marissa. Thanks to the generosity of people in the gaming and disability communities, Mike raised almost thirty thousand dollars. It strikes me that the folks who helped Mike were very similar to those who helped Schuyler get her speech device six years ago. I suspect that some of them WERE the same people.

Here's where things get murky. Mike announced that he was starting the Marissa's Bunny Foundation, and with matching funds from his employer (who wished to remain anonymous), parents of kids with special needs could apply to receive free iPads for their children. This application process included submitting a great deal of extremely personal information. Forty parents were selected, and they were overjoyed.

Well, of course they were. In addition to the great need being filled, things like this are rare for parents of kids with disabilities. Generosity and good news are like buried treasure to these families. Enthusiastic parents began making plans with their therapists and school teams to incorporate these iPads into their kids' treatment and curriculum. Then they waited; many were notified that their iPads had shipped.

You know where this is going, I know.

As of this writing, not a single family has received an iPad. Mike has given a number of different stories, about shipping errors and legal obstacles and even threats made against him and his family, causing him to stop any shipments at the advice of his lawyers. He offered to refund donations to anyone who asked, but then claimed that his access to PayPal had been restricted.  As more and more people compared notes, the extent to which Mike had been covering his tracks and telling outright lies became clear.

Finally, it all came down to this, an email sent yesterday to the "winners":

There are no longer any iPads. I've never had access to the matching funds I've been promised. Something along the way changed and I'm getting hung out to dry by my bosses.

As to my obliqueness about my bosses and the company I work for, If their identities ever got out, long ago they promised I'd lose my job, my insurance, and take us for everything we have making Marissa's surgery impossible to afford. If I keep my mouth shut and the fact that I got screwed never gets out in any way then I keep my job, and my insurance, and they've promised to pay for Marissa's surgery after we give everything we can.

My reputation is now screwed with the SN community but I have to be able to give Marissa the best chance for as close to normal as possible and will happily work under whatever conditions I need to. I'll dance with the Devil if it gets Marissa what she needs.

We're not going to fundraise any more. There won't be any more giveaways on Marissasbunny for special needs or otherwise. I'm still going to update with Marissa's surgical preps and that kind of thing, but that's all. Marissasbunny is going back to what it was before they got involved, back when many of you started reading. No more promotions, just Marissa and her brother's story.

There are the first words that are my own and not through a corporate lawyer since Thursday.


There will be aftershocks to this story, I'm sure, especially since a number of people have apparently contacted law enforcement. As of this writing, Mike has said that he will be personally giving an iPad to a single winner this afternoon, with photos and no doubt some balloons and bullshit-flavored cupcakes. But I think this story is mostly over.

So what happened here? Was it all a scam, and if it was, to what end? No one paid for an iPad or a raffle ticket, but apparently there were pleas for matching funds funds from Mike's apparently mustache-twirling, comic book villain bosses. That request raised about $4400, funds that have now simply disappeared, along with other money raised for various reasons during the promotion. And the Marissa's Bunny Foundation? Does not appear to exist at all.

Does Marissa herself exist? Did that original almost thirty grand actually help her receive needed surgery? I'm going to step on my swelling cynicism for a moment and say that yeah, I believe that Marissa probably does exist and that Mike's original plea for money was legit. If Mike is anything like Julie and I, he must have been astonished at the generosity of a bunch of strangers on the internet.

Perhaps that opened a door to a dark place for him, a sense that "If it was that easy, then maybe..." Or maybe he was so desperate to be someone's hero that he kept this going to feed on the accolades and the gratitude for the work he was doing. Work that we now can see he probably wasn't doing at all.

I guess there are some lessons to be learned here, beyond the old "trust but verify". After all, when Julie and I and a good friend did a fundraiser to help buy Schuyler her speech device, those of you who donated took it on faith that we were telling the truth. As much as I've welcomed the democratization of the AAC process that the iPad has potentially brought to our families, this might just be the flip side. When you look carefully at Mike's whole "Free iPads for special needs kids!!!" promotion, it fails the sniff test on multiple levels. A speech-language therapist might have picked up on that, because an SLP doesn't exist on scraps of hope like special needs parents do. Situations like this serve as a reminder that regardless of the product or the therapy, we need as much professional guidance as we can get.

For me, however, there's a larger lesson here, a reminder that there is an even greater equalizer at work. People talk about the disability community as if we all gather at the VFW hall on Fridays and approve the minutes from the last meeting while practicing our secret handshake. And those of us who live in this world are treated like saints. "God chose YOU for this very very very special job!"

But our reality is one of blind selection, one of the few truly equal experiences in the universe. A very fair unfairness, perhaps. Membership in this community is open to Kennedys and Palins alike. We celebrate writers like Rupert Isaacson, but we struggle to make sense of someone like Arthur Miller. Many of us talk about how we're not special, we are just doing what any parent would do for their child, but we know that many don't.

Most of all, we like to believe that our commonalities provide a kind of sanctuary, and that when we hear a story like Marissa's and we meet someone like her father, we believe we can trust them. Because to face the alternative, to admit that a father would see his broken, beautiful daughter as a device by which to cheat his fellow special needs parents? That's a bitter pill to swallow. And we've forced down a lot of bitter medicine already.

I have a confession to make now. Honestly, I hope that there is no Marissa, or at the very least that she's a distant niece of Mike's, or a neighbor's kid. I find myself hoping that this is a full-blown scam, an attempt by an outsider to swindle families of kids with disabilities.

Because as bad as that would be, I find it worlds more troubling to imagine such a cynical act being committed by one of our own.

July 1, 2011

Why we fight.

This is why it matters.

From Courthouse News Service:

DAYTON, Ohio (CN) - Dayton police "mistook" a mentally handicapped teenager's speech impediment for "disrespect," so they Tasered, pepper-sprayed and beat him and called for backup from "upward of 20 police officers" after the boy rode his bicycle home to ask his mother for help, the boy's mom says.

Pamela Ford says her "mentally challenged/handicapped" son Jesse Kersey, 17, was riding his bike near his Dayton home when Officer Willie Hooper stopped him and tried to talk to him.

The mom says that "Prior to the incident described below, defendant Hooper knew Jesse and was aware that Jesse was mentally challenged/handicapped and a minor child."


"Jesse was charged with assault on a peace officer, resisting arrest, and obstructing official business."

However, "Jesse was declared incompetent by the Montgomery County Juvenile Court and the charges against Jesse were dismissed."

Jesse and his mom seek damages from the city and the two lead officers, for false imprisonment, false arrest, malicious prosecution, assault, battery, excessive use of force, infliction of emotional distress and civil conspiracy.

(Edited to add: Here's another article that gives the police officers' side of the story as well.  Interesting to note that even if you were to take the cops' side as gospel, it still brings up some questions.  Why would the cops behave this way even after being told, more than once, that there was a disability/communication issue?  Is this an appropriate force level for a kid riding his bicycle the wrong way down a street?  At any point, did the officer even try to take what would probably be minimal efforts to defuse the situation?  Even knowing the police side of the story, I still think the mother could have been charged with several counts of "exactly what Rob would have done".)

That could be Schuyler. That could be any non-verbal but ambulatory kid with a developmental disorder. It could be your kid.

Officer Willie Hooper knew Jesse Kersey, he was already aware of the young man's disability. He knew, and yet he still did this. He knew, but he didn't understand, didn't extend basic human dignity to a young man who didn't understand and couldn't communicate to the officer's satisfaction. This doesn't sound like a mistake. It sounds like a value judgment, one that ultimately concluded that a kid like Jesse Kersey HAD no value.

Now, where would someone get the idea that people with developmental disabilities have diminished value as human beings?

All this week, on Twitter and Facebook and my blog, I've made a little noise wherever I can about Tracy Morgan's recent remarks about kids with developmental disorders, and I've had a few good discussions about the topic. But I've also been told that I need to lighten up, that the attention directed at Morgan is tiresome, that free speech includes immunity from personal responsibility or simple human decency. I've been told that jokes about people with disabilities are harmless.

When I talk about a societal narrative fed by the likes of Tracy Morgan and members of the Dayton Police Department and the entitled hipsters loudly demanding their freedom of speech when taken to task for calling someone a retard, a societal narrative that re-enforces the idea that the least powerful among us are fair game, THIS is why it's important.

And when parents and advocates stand up and protest this narrative, we're not doing so to get a ride on "the Tracy Morgan free publicity train", as comedian Rob Corddry suggested on Twitter this week. We're not opportunists, looking for some sort of self-promotion. We're not pleased that Tracy Morgan gave us a chance to make a larger point, and we're not happy to shock the world with the story of Jesse Kersey, or any of the others who have been denied their dignity because they have the audacity to be broken, to be less than perfect, to be different.

We would love to live in a universe where our fellow citizens of the world heard vile remarks or read of monstrous deeds and stood up to say that we as a society are better than this. We'd like public figures and groups besides parents and the same advocacy groups like the Arc or Special Olympics to say "Well now, I may not have a dog in this fight, but that right there? THAT'S fucked up." We would like for the denial of basic human dignity to be something that distresses most anyone, outside those of us in the disability community. We'd like to feel like we have more choices that either keeping our mouths shut or standing on a hill, shouting into the wind and hoping we don't get hit by lightning.

In my book, I wrote about the island I dream about, the one where we'd go to live, just our little family, where a protecting ocean would shield Schuyler from the likes of Tracy Morgan and Officer Hooper and a depressingly large segment of society that sees her as a punchline, or worse. I admitted that I knew it was wrong, but it was still a very happy fantasy.

After this week and the conversations I keep finding myself having and the walls I keep throwing myself against, I would take Schuyler to that island in the time it would take to pack her sock monkeys and get to the airport.