Fighting Monsters with Rubber Swords

A Different Drummer

2012-01-28T13:54:00.000-06:00

Earlier this week, Schuyler and I went down to San Antonio to see our dear friends Jim and Kim, Schuyler's godparents. (Or whatever we agnostic heathens are supposed to call the folks who will take up the feeding and watering of our kid if Julie and I murder each other or get eaten by a sasquatch one day.) I was going in order to work with Jim's trombone class, and Schuyler was along for the ride. She got to see two of her favorite people in the world, and she got to miss two days of school, so it was a solid win for her. It was also an opportunity for Schuyler to get in a percussion lesson with a member of Jim's talented staff, sneaking in some actual learning amongst all the fun truancy.

Schuyler has to work hard in band, but she's staying on top of it. Her band director here in Plano continues to be fantastic. She strikes the perfect balance between accommodating Schuyler enough to keep things realistic for her and at the same time challenging her with a meaningful band experience. I've already shared Schuyler's previous concert experience, with her kind and only slightly narcissistic permission. (I know, she comes by it honestly.) Her next performance is coming up next week, and she will again be playing a multitude of instruments, including crash cymbals, the bass drum (her favorite, by a long shot) and the marimba. That last one is still quite challenging for her, requiring as it does for her to read music, a skill that she's working on and slowly improving upon. Her band director spent some of her no doubt valuable time rewriting a very difficult part for Schuyler to make it more manageable, but it's still hard enough to require a good amount of work. The challenge frustrates Schuyler, but it is also very good for her.

Schuyler spent most of the day in San Antonio observing the bands, including watching her father play, which I believe surprised her; I think in her eyes, I was like Atticus Finch shooting the rabid dog in the street. More importantly for her, Schuyler watched the other kids. They were mostly older than her, but only by a few years, and the music they were playing was harder but not drastically so. She saw how they worked together, and how they helped each other. In short, she saw how they behaved as a community, as friends working together to create something special while having fun doing so. (Disability community, take note.)

When Schuyler took her lesson, I took a few photos and then hid in the back for most of it. I eventually left the room so I wouldn't be "that parent", although honestly, I should have left them alone the whole time. (Well, what are you gonna do?) What I saw when they began was what I've observed countless times before. There was a bit of initial confusion on the part of her new teacher on how exactly to approach Schuyler, but then subtle adjustments as Schuyler showed him how she could focus and work.

Schuyler is good about teaching her teachers how to teach her, if that makes any sense. In circumstances like this, Schuyler's disability comes to the front, but she's also very quick to show that it doesn't get to call the shots. Teaching Schuyler isn't like teaching anyone else, and the good teachers recognize this but don't let it scare them off or cause them to give up on her. This was one of the good ones. She's been fortunate this year in that most of her teachers have been willing to do the work to break into Schuyler's world.

Schuyler presents as neurotypical most of the time, but only on the surface and rarely for long. Her differentness can take people by surprise, and I confess that I judge those people, often unfairly, by how they respond to that surprise. But as she embraces her new role as a percussionist in her school band, I see for Schuyler a path forward, and a way to make her way in the world on terms that are very much of her own making.

Everyone claims to value the act of marching to the beat of a different drummer, which suggests a need for that different drummer. Schuyler's got you covered.

Voices of Change

2012-01-23T10:51:00.001-06:00

I've written a new post for Support for Special Needs, this time on the changing nature of how Schuyler uses AAC technology. Don't worry, it's not very technical at all. You can be assured that a blog post isn't going to get too far into the weeds when it includes the words "farting monkey". You're welcome.

Quality

2012-01-16T07:53:00.001-06:00

This week at Support for Special Needs, I've written about the awful story of the Children's Hospital of Philadelphia's shameful treatment of a little girl with a developmental disability in need of a kidney transplant. If you haven't read about it, I hope you had a nice weekend offline. Because, seriously, it has generated more outrage and action online than I have seen in a long time. And rightly so.

Exciting News: Look for me at Support for Special Needs weekly now. (Or weakly, if you don't care for my writing. You know who you are.)

Storm-toss'd

2012-01-15T23:13:00.000-06:00

It was a rough weekend for Schuyler. The monster that has been plaguing her lately was as hungry as ever. More complex partial seizures, more storms in her head, leaving her exhausted, sad, confused.

The worst of them hit her in a toy store, sapping her energy and her interest. One minute we were wandering the aisles of Toys-R-Us, dueling with Nerf swords and contemplating the purchase of a very cool dinosaur to add to her collection. The next, she stood in place as if she had no idea how she got there, face flush and eyes blank. We went next door to a pet store, and there was a group there adopting out puppies. There were puppies to play with, but not for her, not this time.

"Can we go home?" she asked quietly.

Later, as we drove to pick up Julie from work, Schuyler and I discussed her seizures. I explained again what was happening, and what we were might do to bring them under control.

"We're going to figure out how to make your brain stop getting mad at you," I told her. "We're going to try our very, very best to make things better, I promise."

She thought this over and nodded. She wasn't sad, exactly. More like... resigned. Without looking at me, she pointed to her throat.

"I want to talk like everyone else," she said.

I'm not sure what it says about me as a parent or a person, but all I could say to her was, "I know, sweetheart. I know. And I'm sorry I can't give that to you."

It says everything about Schuyler that she seemed entirely satisfied with that response.

Of monsters and mousetraps: 2012

2012-01-02T07:05:00.003-06:00

I have a new post up at Support for Special Needs, about the coming of the new year and what it can mean for parents of kids with special needs. I'm looking forward to continuing my association with Support for Special Needs; the site is a fantastic resource and safe place for advocates and caregivers, and I'm honored to have the opportunity to contribute to their work in my own small way.

Oh, and Happy New Year, everyone. Good timing, too; I was all set with 2011.

MonsterGram

2012-01-01T20:06:00.001-06:00

Sometimes we allow ourselves to forget.

Sometimes the monster sends a friendly reminder.

Friday was a rough day for Schuyler. Not one but two seizures, we believe, and the second one actually left her in tears. The confusion, the disorientation, the light-headedness, they upset her. She's aware of when something isn't right with her broken brain. Well, of course she is.

(Note: Before I go any further, there's something I probably haven't made clear. I know it seems like I share everything here, but the fact is that I don't, not by a long shot. I think that's appropriate.

But when I talk about the confusion and anxiety that we feel about Schuyler's seizures, I might be giving the impression that we are just sitting here on our hands, muttering "What the fuck?" and crying ourselves to sleep. I've gotten a few emails suggesting that we're not doing enough, or even anything at all, for Schuyler, based on that erroneous assumption. Please, don't be that person.)

We've been trying to catch one of them on video, but it's tricky. Search for "complex partial seizure" on YouTube and you'll see why they are easy to miss. Schuyler's seizures are mostly become apparent by their after-effects, the moodiness and the confusion. Sometimes she tells us that she is dizzy, which seems to happen right before a seizure, but mostly she simple tells us sadly after. "My brain is mad at me."

So we didn't catch them on Friday. One occurred as she was waking up, we think, and the other in the car as we went to a movie. We tried to give her a happy afternoon, however, and by the time we engaged in some strict "cheeseburger & milkshake" therapy, she was mostly over it, aside from being tired.

We were all over it, I think, until I got a Google alert email on my phone. I have one set up for "polymicrogyria", just in case some new bit of helpful research is posted online. But that's not usually what it catches. And it wasn't this time, either.

From The Toronto Star:

“A beautiful, angelic child, full of grace and patience,” writes Anthony Moyson of his son, Isaac Dylan, who died in February of a rare brain disease called Polymicrogyria, aged 13.

Polymicrogyria. Thirteen.

It's easy to forget. It's easy to pretend that the only obstacles in Schuyler's path involve school or the politics of the playground or her murky, unsettled future of trying to make it in the world independently. It's easy to pretend that incivility or social injustice could be the only things that could keep her down. It's easy to lose sleep over the question of what will happen to Schuyler when we are gone, but not over the very very horrible alternative.

I like to believe that Schuyler's monster now has blunted teeth and clipped claws. I think it probably does, mostly. But as her maybe-seizures get maybe-worse, we are reminded of the impermanence of health and the persistence of monsters.

This time of year, sleepless nights seem especially cold and dark.

"Dear Santa..."

2011-12-25T11:10:00.000-06:00

Christmas Eve, 2011

2011-12-24T00:25:00.002-06:00

I usually write a Christmas Eve post that is mostly about my own faith, such as it is. I'll certainly link to and quote from one I like, from 2008, which says it pretty well already:

I guess on Christmas Eve of all days, I permit myself to believe that perhaps Schuyler's strange words aren't necessarily broken, but from some other world that I'll never be able to visit but which, through her, I get to glimpse.

In 1 Corinthians, St. Paul describes the tongues of angels, unintelligible to us. Maybe, just maybe, this is what he meant. On today of all days, even in my deeply held agnosticism, I'm like Thomas Hardy in his poem "The Oxen". I'm not inclined to believe in miracles, but that doesn't mean I don't pay attention to the things around me, like Schuyler, that sometimes seem miraculous.

I don't necessarily believe, but sometimes I hope, and that might just be enough.

There's a poem that I like to quote, one that speaks of an agnostic's dilemma at Christmas, and how he doesn't have faith, but sometimes wishes he did.

I love that poem. I'll probably quote it at the end here, too.

Today, however, my thoughts are of Schuyler, and what she calls "the little monster in my head". There are two reasons for this. The first is that as we continue to observe Schuyler and read more about what might be happening to her, we start to figure things out. We're tracking the probable relationship between her menstrual cycle and the onset of seizures, for example.

And we believe we have a better idea of what they are. Not the absence seizures that we originally thought, at least not now. As they become more pronounced, and especially since we observed one of them first-hand recently, we believe that she is having partial complex seizures.

From the epilepsy.com site:

How long do they last?

They usually last between 30 seconds and 2 minutes. Afterward, the person may be tired or confused for about 15 minutes and may not be fully normal for hours.

Tell me more

These seizures usually start in a small area of the temporal lobe or frontal lobe of the brain. They quickly involve other areas of the brain that affect alertness and awareness. So even though the person's eyes are open and they may make movements that seem to have a purpose, in reality "nobody's home." If the symptoms are subtle, other people may think the person is just daydreaming.

Some people can have seizures of this kind without realizing that anything has happened. Because the seizure can wipe out memories of events just before or after it, however, memory lapses can be a problem.

Some of these seizures (usually ones beginning in the temporal lobe) start with a simple partial seizure. Also called an aura, this warning seizure often includes an odd feeling in the stomach. Then the person loses awareness and stares blankly. Most people move their mouth, pick at the air or their clothing, or perform other purposeless actions. These movements are called "automatisms" (aw-TOM-ah-TIZ-ums). Less often, people may repeat words or phrases, laugh, scream, or cry. Some people do things during these seizures that can be dangerous or embarrassing, such as walking into traffic or taking their clothes off. These people need to take precautions in advance.

Complex partial seizures starting in the frontal lobe tend to be shorter than the ones from the temporal lobe. The seizures that start in the frontal lobe are also more likely to include automatisms like bicycling movements of the legs or pelvic thrusting.

Some complex partial seizures turn into secondarily generalized seizures.

What else could it be?

Complex partial seizures sometimes resemble daydreaming or absence seizures.

That describes Schuyler's episodes perfectly. Last spring, we observed her making tiny movements with her mouth while she was "out"; the last time a few weeks ago, she simply slouched down in the back seat of the car and opened her mouth. None of this is terribly new information, just a matter of us putting pieces together and making the connections. I'm also not sure if partial complex seizures are any worse than absence seizures. Just a slightly different monster, and perhaps a slightly better understanding.

The other reason I've been thinking about her seizures today is that I'm pretty sure she had one yesterday, while we were at the mall doing the last of our holiday shopping. It would certainly be a good time for one, as far as stimulus goes. The mall isn't the best place to go on Christmas Eve Eve, after all. I felt a little like I was trapped in an episode of The Walking Dead, not running from the zombies but just scooting along with them.

Schuyler alerted me to this one, telling me that she felt dizzy. This is how she's described it in the past. As soon as we could break free of the "Every day I'm shufflin'" crowd, we grabbed something to drink and took a seat. I took out my phone, hoping to catch this one on video, but it had already happened, probably before she said anything to me about it. What I caught instead was a photo of Schuyler's expression, beautiful and sad. She was probably in what I've learned is called the postictal state, in which she's basically rebooting. A little crabby and a lot disoriented. Another parent of a child with seizures wrote to me and said she knew that look.

And like before, after ten or twenty minutes, Schuyler was back to her old self, although a little fatigued.

The thing about yesterday, however, is this: I think that at the end of the day, when she crawled into bed with Jasper and kissed me goodnight, she was happy. We'd mostly had a good day. And I keep coming back to this in my mind, the fact that we've reached a point where she can tell us that a seizure is either coming or has just happened, and we can deal with it and move forward. We adapt, we recognize that there's a monster in the room, and then we readjust our seating and carry on.

This Christmas Eve, I'm as far away as ever from embracing the Christian faith, and now Schuyler is old enough to express that she doesn't buy it, either. I'm sure that's as much about fitting in with her parents as anything else, but it means that she's aware that this choice sets her apart from most of her peers, and she's making it anyway. She's used to being different, and I believe that she's too strong to put her faith in fairy tales.

And yet, on this Christmas Eve like so many others, I find myself looking at the comfort of big-f Faith and envying that comfort, silly though I may find its underpinnings to be. Thomas Hardy understood that, I think.

The Oxen

Christmas Eve, and twelve of the clock,
"Now they are all on their knees",
An elder said as we sat in a flock
By the embers in hearthside ease.

We pictured the meek mild creatures where
They dwelt in their strawy pen,
Nor did it occur to one of us there
To doubt they were kneeling then.

So fair a fancy few would weave
In these years! Yet, I feel,
If someone said on Christmas Eve,
"Come; see the oxen kneel

"In the lonely barton by yonder coomb
Our childhood used to know",
I should go with him in the gloom,
Hoping it might be so.

-- Thomas Hardy

12

2011-12-21T00:01:00.005-06:00

I have spent the last twelve years in a state of grace.

I've known happiness that I can't describe, and I have felt sadness and fear that also feel too big for words.

I've watched a quizzical little baby grow to an ethereal little girl, and I've seen that child grow into a beautiful and tough young lady who walks and lives in this world now, but on her own terms.

It hasn't been easy, and I've not always (or perhaps even mostly) been completely up to the job of being Schuyler's father. I've probably stumbled as often as I've gotten it right. But I wouldn't un-live a moment of it, not even the sad times, nor would I trade places with any human being on the face of the earth. I have lived a charmed and privileged life in these twelve years, and I know now that the thirty-two years that preceded them were nothing but prelude.

Happy birthday, my weird and wondrous monster-slayer.

A Season of Difference

2011-12-19T08:43:00.001-06:00

There's a new post at Support for Special Needs for your consideration. It deals with the holidays and how Schuyler's "differentness" may be coloring her own perspective on them. It's about being different, as a little girl with a broken brain and as a family, and how one may inform the other.

Schuyler is growing up; she turns twelve on Wednesday. Sometimes I look at her and see the young woman she is becoming, and my feelings about that are... complicated. As are most things where Schuyler is concerned. Most things, except her love, which is the purest thing in the world.

Fuzzy Jedi

2011-12-17T00:47:00.000-06:00

A Ghost of Christmas Past

2011-12-13T22:08:00.001-06:00

I unearthed another short video, this time from Christmas of 2002. Schuyler had just turned three. She didn't care much for her presents, but she dug the snow and she loved her mother and father without limits. And her mittens didn't fit. That was Schuyler in the waning days of 2002.

This was the last Christmas we had without the known presence of her monster, and all the heaviness in the air that accompanied that knowledge for so many years. It was also our last real Christmas in New Haven, Connecticut. By this time the next year, we were on our way to Texas.

Nine years, wow. It feels roughly a thousand years ago. Approximately.

As long-time readers will remember, we used to call Schuyler "The Chubbin". You'll see why. It's hard to reconcile that fat, totally wordless little monkey with the tall drink of communicating water we have now.

I sort of wish I could warn that family how much sorrow was waiting for them, and how much joy, too. Mostly the joy.

Well, he did ask...

2011-12-10T12:49:00.005-06:00

This might be a story of how, in a moment of truth, I failed to properly advocate for Schuyler, and how it ultimately didn't matter. Or it might just be a cute little anecdote. It may very well be an indication that everything is going to be okay. You decide.

Last night, Schuyler and I were at a favorite semi-fancy grocery store in our neighborhood, looking for a birthday cake for Julie. (I know, a day late. Don't judge.) We don't go there all the time, on account of that whole "not made of money" thing, but it's a nice place with an interesting clientele. A few weeks ago, I found myself standing next to one of my favorite actors from one of my favorite tv shows, for example. (Idea for a new show: Looking at Beans with Buddy!)

There's a slight snoot factor with some of the shoppers, but the people who work there are super nice, and the store hires a lot of persons with disabilities and doesn't hesitate to present them up front as the face of the store. That matters to me, a lot.

When Schuyler and I shop, we have fun. She's still young enough and... odd enough to find adventure at the grocery store, and really, so am I. (Well, not so much with the young, but certainly the odd.) On yesterday's trip, we stumbled across a display of very cool holiday hats, and we were trying them on and being goofy when a gentleman stopped and watched us for a moment. I was posing for Schuyler and she was laughing and jabbering happily. As she does.

The man waited until he caught my eye. "Is there something wrong with her?" he asked.

He didn't say it rudely, and I suppose he might have even thought he was simply being curious. But he said it, and he said it right in front of her, as if she wasn't there, or more to the point, as if she wasn't capable of understanding what he said. An assumption, far too common, made based on the fact that she didn't communicate in a way that he understood.

I would like to be able to say that I responded with patience and took advantage of this teachable moment to educate him on Schuyler's disability and his own need for empathy. And really, I wouldn't mind reporting that I instead came back with some clever zinger that put him in his place, either.

But honestly? I did neither. I stood there for a moment, dumbfounded. I dropped the ball.

The ball did not stay dropped for long, though. Schuyler scrunched up her face, pointed to the man and gave him a thumbs down.

My hero.

The end of the story is a little anti-climactic. When I saw Schuyler, I broke up laughing, and due to my persistent holiday cold, that laughter led to a coughing fit. I couldn't stop, and that cracked up Schuyler, who then started laughing her goony little laugh. So basically, we answered him with laughter and coughing. The man just sort of walked away while I bent over coughing and Schuyler pounded on my back, still laughing.

I guess we answered his question. "Yes, she speaks Martian and I have tuberculosis. Happy holidays."

So there you go. Self-advocacy at its most concise. I like to think we're raising her right.

Welcome to the Club

2011-12-05T07:25:00.001-06:00

Right on schedule, my every-other-Monday post at Support for Special Needs is up. Go read my current thoughts on community within the world of disability, at least from this parent's perspective. My feelings have changed a bit over the years. Well, it happens.

By the way, Schuyler just walked over to my desk and gave me a message for everyone who said such nice things about her percussion performance video. She said, and I quote, "Thank you for watching." So there you go.

2003, the day after Schuyler's diagnosis

A Good Day, with an Asterisk

2011-12-03T01:26:00.002-06:00

Yesterday, Schuyler had a very good day.

Mostly.

After a semester of hard work, Schuyler's beginning band class held an in-school recital; in her case, the beginner horns and percussion. Schuyler has been excited but anxious about this performance. I'm not sure she's completely accepted that she was really going to be able to be a member of something like a band program. She's been a little hesitant, as if someone was going to take this away from her. Being able to participate completely and meaningfully in an actual performance was exactly the thing to convince her that this is all for real, and hers if she wants it.

So it was a big deal, this performance.

Still, when I walked into the school, I wasn't expecting to see two of our very best friends, Schuyler's godparents, waiting inside. I actually did an old movie-style double-take when I saw them. Their attendance was no small thing; they live about six hours away, after all. Jim and Kim have been huge supporters of Schuyler's all along. Jim is an old friend from high school who is now an exceptionally talented band director; his wife directs the color guard at their school, the girls whom Schuyler still refers to as her "sisters". When they learned that Schuyler had a rough week with at least one seizure and probably more, and knowing how important this first performance was to her, they simply piled into their car and drove to Dallas.

Just like that.

Schuyler loves Jim and Kim without hesitation or limits. When she saw them, she waved and smiled a smile that was pretty much in evidence throughout the performance. She ended up doing very well on the recital, and loved every minute of it.

Don't believe me? See for yourself:

After the performance, we scarfed up some free cookies and spent some time visiting with to Schuyler's band director. She's an overbeliever; we like her very much. Afterwards we killed some time until Julie got off work and then headed out for dinner.

It was then, in the car, that Schuyler began to unravel.

Julie noticed it first. Schuyler was trying to tell her something, but her speech was suddenly very hard to understand, almost like a baby babbling. As we parked the car, I turned and saw Schuyler leaning lethargically against the door, her eyes distant and her mouth open slightly. I said her name a few times, and she snapped back. She was irritable and disoriented for maybe a minute and remained a little quiet and distant at dinner.

She came back to us, though. For the most part.

We were all a little shaken, as this was the closest any of us had really come to actually witnessing one of Schuyler's absence seizures. But we took our cues from Schuyler, who seemed determined to have a fun evening despite her lingering disorientation and fatigue.

Schuyler had a good day, mostly. At its conclusion, she decided that it should be a good day to the very end, monster or no. We're okay with that decision.

Thankful

2011-11-23T15:07:00.003-06:00

Thanksgiving can be sort of tricky for special needs parents sometimes. Christmas is perhaps a little easier, I think, only because virtues like compassion and acceptance are usually in abundance during the Holidays (the sinister War on Christmas notwithstanding). There's an element of taking stock at Thanksgiving, however, that can be challenging for special needs families most of all. We're not always on board with making lemonade out of those life-handed lemons under the best of circumstances, after all. We'd like to cut those lemons and stick them in someone's eye much of the time, really. Being told "It's Thanksgiving, goddamn it, there's always something to be thankful for, so get thanking, you!" doesn't always sit well.

Thing is, though, it's true. There is always something deserving of gratitude. It can be hard to silently endure the "We're thankful that little Madison was the top scorer on her soccer team!" status updates on our friends' Facebook pages, but we do what we always do. We recalibrate for our own lives and our own worlds. We're not lowering the bar, certainly; I feel pretty certain that Schuyler works every bit as hard and every bit as smartly as little Madison, and gets handed lemons that would crush Madison's mom's minivan like a bug.

Thanksgiving for our families is different from that of the neurotypical family. And perhaps it's exactly the same, too.

Parents of neurotypical kids probably don't express gratitude for their child's ability to speak (some of them very much do not, I suspect), but this year, I am thankful that Schuyler has made such great strides in communication that her garbled but improving verbal speech, her sign language, her AAC device and her Advanced Mime School techniques have allowed her to succeed in her new school beyond our expectations.

I'm thankful that Schuyler's hunger for independence and The New has served her well in middle school. She gets overwhelmed, to be sure, and she screws up frequently. But her teachers seem to understand that making those mistakes is good for her. Schuyler has stumbled a lot, particularly in the past few weeks. She is definitely ready for a little break, I think, and a chance to regain her focus. But there is a lot about middle school that neurotypical kids don't necessarily have to constantly work to master. I think the time will be here soon when Schuyler won't have to work so hard to navigate those obstacles, either. For that, I am preemptively thankful.

I'm thankful that Schuyler's brain seems to be messing with her in small and manageable ways. The maybe-seizures that may or may not have been tormenting her last spring have maybe returned a time or two, maybe maybe maybe. (Stupid inconclusive, ill-timed EEG; we'd love to try again, but our money-tree seems to have developed root rot.) It occurred to us a few weeks ago, when Schuyler maybe had a maybe seizure in our maybe living room, that she may very well be having them regularly, but has simply adjusted to them and compensated for their effects. Maybe. I know many parents for whom seizures are the cause of constant vigilance and anxiety, and I also know parents who have buried the kids that seizures took from them. Of all the things I am thankful for this year, the relatively kittenish qualities of Polly (as Schuyler refers to "the little monster in my head") are probably the most heartfelt.

I'm thankful that Schuyler can self-regulate her diet and is at a low risk for choking now. I'm not sure how many parents are thankful that their neurotypical kids can eat, but I am. I'm thankful that Schuyler has incorporated punky cool wristbands into her fashion style so that she can discreetly deal with her occasional drooling. I'm thankful that she is finding her way to navigate through the world. I resent the fact that the world has so little space for kids who are different, kids like Schuyler, but she doesn't seem to share that resentment. She simply adjusts, without shame but instead with a matter-of-factness that seems to minimize her difference by owning it with as little drama as possible.

I'm thankful for Schuyler's independence, and for her positive attitude as she makes her way in the world. That's no small thing. No one can predict what kind of adult Schuyler will be, but I don't think she's on a pathway to bitterness and resentment. She's always behaved as something of a self-appointed ambassador between her special ed classmates and the neurotypical kids in her mainstream classes. Schuyler turns twelve next month, which I think is probably old enough to start considering a lot of her personality traits to be hard-wired. I see in Schuyler the beginnings of a community builder, a positive force for whatever she chooses. I'm thankful for the young lady she's growing into.

I'm thankful for the friends who have been so supportive of Schuyler, particularly the two who will take over her feeding and watering and occasional hosing down in the unlikely event that Julie and I should perish together. (Or murder each other; don't rule that out.) Ask any special needs parent what keeps them up at night, and they might very well answer "What would become of my kid if something happened to me?" Having the beginnings of a plan in place represents a great deal of peace of mind for us. I'm also thankful to have a good job with a big-hearted boss and the flexibility to take care of Schuyler when I need to. That's also an amazing thing to be able to say. I'm grateful to everyone who has kept Schuyler in their hearts and yes, their prayers, over the years.

Finally, in a weird way, I am also ever-so-slightly thankful for Schuyler's monster. It's a motherfucker, to be sure, but it has put some obstacles in her way, and in ours, which have made us all better people in the overcoming. It has helped to make Schuyler who she is, although as I watch how hard she works against it, I would still take it away from her in an instant. I can guarantee that we pay closer attention to Schuyler when she's trying to tell us something than most parents of neurotypical kids, out of necessity, but a funny thing happens as a result. In watching Schuyler closely and in listening for her inflection, we are rewarded with an intense intimacy in our interaction. In waiting for her to form more complicated thoughts on her AAC device, we develop a kind of patience that I can't imagine is paralleled in neurotypical parenting. As a young child, Schuyler's internal world was a place that was mostly inscrutable to us. The older she gets and the more clearly she communicates, the more we get to explore that weird and wonderful world of hers.

Some of her walls have transformed, through her hard and often frustrating work, into windows. A few of them have even become doors. And for that, I am truly and unshakably thankful.

The Things Unseen

2011-11-21T07:46:00.001-06:00

There's a new piece called "The Things Unseen" over at Support for Special Needs.

Everyone have a nice Thanksgiving this week, if you're an American, and a swell Thursday if you're not (or if you're a thankless grouch, I suppose). I will be turning forty-four on Saturday, assuming I don't have a very, very bad week.

Ha ha! I'm old.

Dinner and a monster movie

2011-11-20T14:25:00.000-06:00

Season of Gratitude

2011-11-10T01:34:00.004-06:00

Much of the life of a special needs parent involves anticipating the worst case scenarios and avoiding them if possible. It never stops, and it never should. If I want to enjoy the unique privilege of being Schuyler's father and friend, the price I pay is never-ending monster watch, a constant vigilance against this grand rough world and its many harms. And really, even at its worst, that price is a bargain.

But sometimes, our vigilance can stand in the way of seeing the things that are in fact going well, going better than expected. I see a number of friends online taking the month of November to give thanks for the good things in their lives. Now personally, I've reserved November for growing a frightening critter on my face and turning an age that might be described as "thirty-fourteen", but I will take this opportunity to express my gratitude, and my relief, for one very important item.

In some very significant ways, Schuyler is thriving at her new school. And her teachers believe in her.

We had the opportunity to drop in at the end of the school day yesterday, in order to pick up the band fundraiser pizza kits we ordered. (Cheese pizzas were a little iffy, but the cheesy bread? I am powerless.) When we walked in, the school was a swirling mass of preteen chaos. I felt a little like Richard Dreyfuss at the end of Close Encounters. And when we found Schuyler, things at first glance were not very encouraging.

We walking down the hall and looked for her near her locker. We only found her after the kids thinned out a bit, for the simple reason that Schuyler was sitting on the floor, her belongings spread out around her as she loaded them into her backpack. For a moment I thought that she had been knocked down Chumbawamba-style, her books scattered by some bully, but when she looked up and saw us, she greeted us cheerfully.

Turns out that's how she does it every day. And for some reason, no one in the crazy busy hallway seems to mind. They just work around her.

As we walked down the halls, I could see once again that as I mentioned elsewhere, Schuyler mostly stands apart from her neurotypical classmates. But what I saw clearly yesterday was that although she's not entirely or even mostly part of their world, they are very much a part of hers.

Schuyler walks down the hall like Mayor McCheese. Every few feet, a student or a teacher says hi to her. One tall girl who had to be two grades older greeted her unhesitatingly with a big hug. Schuyler isn't deeply involved in the social fabric of her classmates, and perhaps it was a silly dream to hope otherwise. But I don't think she's being bullied, and I don't think she's being ignored. If she remains something of an enigma to her classmates, she's an intriguing one, and a mystery worth exploring.

Talking to a few of Schuyler's teachers gave us more information. Schuyler participates enthusiastically and with increasing accuracy, and she gets help from her classmates. As her confidence grows, so does the quality of her participation. Her band director is especially excited about Schuyler's work. We were all ready for Schuyler to require a great deal of modification in her band class, and there's been some. But not as much as any of us anticipated. She's playing independently on the marimba in particular, and yesterday was playing her part by herself in a group. Jolly Old St. Nick, she's got your number.

The thing that more than one teacher expressed that surprised me a little was how rarely Schuyler uses her speech device at school. Not because she's a rotten kid or isn't being supported or feels self-conscious about using it.

She doesn't use it because people understand her.

I've never given up hope, perhaps foolishly, that Schuyler might one day speak intelligibly, and I should be clear. She isn't, not yet, anyway. But the verbal speech that she has and the inflection that she's mastered, along with her signs and her writing, these have given her enough communication ability that she can make herself understood under her own power much of the time.

Schuyler's adapting to her new school environment, but I'll be damned if the school isn't adapting right back.

We've learned not to take this kind of thing for granted, and there's at least one teacher who might not be on board as much as the others. And we've certainly seen a good school situation go sour, so we're not inclined to let it surprise us again. But what we're seeing with her middle school teachers is incredibly encouraging. I feel like Schuyler is on track, and it's been a while since I really felt that was true.

After we talked to Schuyler's teachers, we discussed what was happening, and why things are different now. This school district is one of the best in the state, and Schuyler moved up from one excellent school to another. What's different now? It's an important question. Here are a few thoughts.

Schuyler loves change, and middle school was a huge one. Many special needs kids thrive on routine; Schuyler is almost the opposite. She still needs a lot of structure, but it's a little like eating her vegetables. She's energized by new faces and new places, and every day in middle school provides plenty of both. Even when it trips her up (and it does frequently), the chaos also excites her.

Schuyler's new teachers are looking for her possibilities, not her limits. There is very little "I don't think she can do this" talk going on with her teachers. When modifications are needed, they are made, but they are rarely a starting point.

Her band director in particular is working hard to keep Schuyler on par with her fellow percussionists, and the payoff is Schuyler's bursting joy when she finds herself playing just like everyone else. This week, Schuyler was playing one part of an ensemble piece by herself while her classmates played different parts. When she realized that she was the only person playing the second marimba line, AND she was playing it exactly right, Schuyler apparently lost her mind with happiness.

The result of this new confidence is that she's speaking up in band class more, and approaching the director more frequently. And the director was happy to note that she can understand what Schuyler says.

There it is again: People are understanding Schuyler's communication. When I type that out, something stirs in the center of me, like a dream I dare not acknowledge, the idea that Schuyler is making herself understood without her speech device. When she first began using an AAC device, that was very much NOT the case. She was almost completely unintelligible, and the reaction she got from the world was predictable. Schuyler isn't communicating; her value is therefore diminished.

Well, I believe she WAS communicating. But she wasn't being heard. Certainly not by her teachers back in Austin, and probably not by her family either, not entirely. After six years of verbal modeling with her speech device and the language skills that it helped to teach and re-enforce, Schuyler is seen as a person whose speech is hard to understand, perhaps, but there and waiting to be unlocked. It's still hard work, for her and for the world around her, but she's making it happen. Every day, in ways large and small, Schuyler is gradually taking the wheel.

Schuyler's teachers are excited about working with her, and they are learning how to teach her. I think that's the most important factor with her recent success. It's not just that they are good teachers, although they clearly are excellent educators. She's been failed by more than one good teacher in the past, at previous schools. Now, however, I feel like they are searching for Schuyler's potential, not her ceiling.

Most of her teachers have stayed in close contact with us, keeping us informed of her progress and just how that progress is being made, and asking questions when she stumbles. I can feel their pride when they reach her. Schuyler can be a puzzle, and a challenge, and if you think of her that way rather than focusing on what she can't do, then you start to find her pathways to learning. I feel like that's happening now.

Will it last? Schuyler is a lot of work for teachers, and her middle school experience is just beginning. We've certainly watched as a dream situation has soured in the past. But we dare to hope, because that's what we do. And we dare to believe in someone besides Schuyler, and in all the possibilities that her new school seems to be unlocking.

So in this season of gratitude, I am thankful for Schuyler's new teachers, and her new school life, and the new pathways that are opening up for her, even if they still lead off into a foggy future.

Invisible

2011-11-07T07:32:00.002-06:00

Once again, I've written a piece, this one called "Invisible", for the fine people over at Support for Special Needs. And the good news, at least for me, is that it looks like I'll be a regular contributor over there. Here's hoping it's good news for them as well.

(Also, don't forget that November is "cultivating an ugly plot of facial hair to help fight Cancers of the Man Parts" month. Go visit my Movember page to learn more.)

Medusa

2011-11-01T07:36:00.001-05:00

Medusa was 100% her idea.

Adjustments

2011-10-25T02:27:00.003-05:00

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.

Manly Man Stuff, for Men

2011-10-22T09:52:00.002-05:00

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.

The Road

2011-10-17T07:26:00.001-05:00

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?

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

2011-10-09T20:18:00.006-05:00

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."

Schuyler is my co-pilot

2011-10-02T11:49:00.002-05:00

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

The small print

2011-09-24T23:48:00.003-05:00

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.

Soccer monster

2011-09-18T18:06:00.001-05:00

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.

Seeds

2011-09-16T15:33:00.009-05:00

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.

The Saddest Place in the World

2011-09-10T14:35:00.001-05:00

(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.

Asrael

2011-09-08T22:51:00.002-05:00

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.

Hummingbird

2011-09-04T00:15:00.000-05:00

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.

Push and pull

2011-08-31T11:43:00.008-05:00

"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.

Hamster Science

2011-08-27T22:19:00.000-05:00

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.

Just a Word: Smarty-Pants Edition

2011-08-25T20:42:00.002-05:00

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.

"You are the music while the music lasts."

2011-08-24T20:50:00.000-05:00

Independence Day

2011-08-22T21:00:00.000-05:00

Homecoming...

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.

Schuyler answers

2011-08-20T13:47:00.002-05:00

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!!

Ask Schuyler

2011-08-17T14:14:00.001-05:00

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.

The Calculus of Overbelieving

2011-08-16T16:51:00.001-05:00

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.

More in common

2011-08-15T19:00:00.002-05:00

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.

Just a Word: The Change-Up Edition

2011-08-09T00:57:00.003-05:00

(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.

In the Company of Women

2011-08-08T13:17:00.001-05:00

(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.

Monster Day

2011-08-01T18:42:00.001-05:00

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.

Strong, entitled, impolite.

2011-07-31T22:14:00.003-05:00

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.

Rabbit, Run

2011-07-12T17:13:00.002-05:00

("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.

Regretfully,
-Mike

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.

Why we fight.

2011-07-01T14:30:00.004-05:00

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.

Just a word: Tracy Morgan Edition

2011-06-28T16:53:00.008-05:00

Just a word, Redux, a photo by Citizen Rob on Flickr.

It's been almost two months since I gave my own perspective on the so-called "R-Word" (May 5, 2001 - "Just a Word"), and an interesting conversation has grown out of it. The discussion gave me the opportunity to clarify my position a bit, and to also navigate some of the grey areas in my own thinking.

The most important point for me was that I'm not looking for some kind of ban on the word, which is a silly idea anyway. I don't want to stop people from saying that someone or something is "retarded" if they really want to. If someone feels compelled to use a word like "retard", I think they should absolutely do so, because I want to know that about them and the kind of person they are. And as a person who once used that word fairly frequently, even in my writing (and as recently as four years ago), I felt a little like Nixon going to China. If I can change because of my own experiences with my daughter and the people who would use that word on her, then maybe other people who have greater sensitivity than me can do it, too.

And honestly, I also want to give them a chance to convince me. I want them to understand exactly how powerful a word like that can be, and if they DO get that and still think it's the word they need to use, then I'm all ears. I'm probably not going to agree with them, but I don't think I'm going to change anyone's mind if I try to silence them from saying what they want to say.

Mostly, I want them to NOT want to say it in the first place. I want the word "retard" to taste bad in their mouths.

I was asked to join a Facebook group the other day, one that takes a fairly hard and unforgiving line against any use of the word "retarded" in the entertainment world. Ultimately, I declined. I understand what they wanted to do, but when someone like Lady Gaga or even President Obama slips up and makes an insensitive remark, it's their reaction and the steps they take to make it right that I think provide a chance for real change. You learn a great deal about a person's heart by how they react when they screw up. The word "retarded" has become such a part of the popular culture, and prying it out of the vernacular is going to take some patient work.

Furthermore, I couldn't get behind the group's blanket boycott of television shows and films with characters who use the word. When a celebrity makes a stupid remark in public, I am all for holding them responsible. But what about when a writer uses a word like "retarded" in a line of dialogue to help create a realistic character, like when portraying a snotty teenager on "The Killing"? (The most offensive thing about that show was the season finale; don't even get me started.) Or if the word is used by despicable characters in order to make a larger point about society and the entertainment industry, as in "Tropic Thunder"? As a writer, I have to respect that nuance, and the right of other writers to use ugliness to draw larger pictures.

There's a saying that if the only tool you have is a hammer, then every problem starts to look like a nail. I don't easily take up that particular hammer.

So there are grey areas, and there are honest mistakes that can be remedied, and in those remedies, further awareness of the power of words can be increased in society. If we attack every single utterance of "retarded" and refuse to accept the apologies of those who offer them, we're going to be using our very limited resources to play a gigantic, losing game of Whack-A-Mole. In most cases, we need to educate, not punish.

Because sometimes, there are battles that are truly deserving of every ounce of outrage we can muster. There are people who use the word "retarded" deliberately, not with the slip of a tongue and not wielded satirically, but with cold, cruel calculation, for the purpose of mocking children with disabilities. For easy laughs.

Cue Tracy Morgan...

(From NYTimes.com:)

After another brief flirtation with a woman in the crowd, Mr. Morgan turned sincere. "I love you all so much," he said, "did I tell you that tonight? I've been in trouble lately, and this was big for me that you all came out."

Whatever he had been accused of, Mr. Morgan said, "I don't have that in me. I believe gay, straight, anybody, everybody's supposed to be happy in this world, man."

Resuming his routine, Mr. Morgan warned his audience, "Don't ever mess with women who have retarded kids." As groans and cries of "Uh-oh" were heard, he continued, "Them young retarded males is strong. They're strong like chimps."

Finally, he concluded with a bit about his alleged teenage romance with a girl he described as "a cripple" with a prosthetic arm, a mechanical larynx and a portable dialysis machine.

Read it again.

Tracy Morgan didn't make a mistake, any more than his recent and vile anti-gay remarks were an accident. It wasn't an "oops" moment. He couldn't have thought for a moment that no one was paying attention, not on the heels of his previous homophobic remarks. It wasn't off the cuff. Knowing the risk he was taking, Tracy Morgan deliberately made a horrible, stupid and premeditated joke about a specific group of people whom he concluded were mostly powerless to push back.

I'm going to cynically suggest that he may very well have concluded correctly.

One of the most surprising defenses of using the word "retarded" as an insult that I've heard, on many occasions, is the idea that it's okay because a great many of those in a position to be hurt probably don't even know they've been insulted, and can't really respond meaningfully. (If you truly believe that makes it better and not worse, I have two words for you, and they're not "Happy Birthday".) But that argument might actually speak to an ugly truth, at least indirectly. In the entertainment industry, I suspect that the degree of the offense is largely determined by the power of the group being offended. Power as defined by purchasing power, political power, the power to organize and fundraise, the power to withdraw financial support, the power to boycott. The power to be heard.

Who's going to speak up for "retarded kids"? Parents? Kennedys? Is NBC going to risk firing their 30 Rock cash cow over this? Will Tina Fey and Star Jones express any regret for their earlier defense of Morgan's "good heart"?

If you've read my thoughts on use of the word "retarded" and wondered where I draw the line without nuance or shades of grey, here you go. I know he's not alone in the comedy world, but he's got a bigger platform than most. Tracy Morgan just set my gold standard for "Don't say that."

I hope I'll need to update this post to report on real consequences as a result of Tracy Morgan's attack on children with disabilities, probably the most powerless among us. But I'd be lying if I said I thought that was going to happen.

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.

Sometimes it's hard to identify the battles that are worth fighting.

Sometimes? Not so hard.

-----

Update, 6/30: Well, more of a non-update. The Associated Press put it succinctly.

(AP) – Thus far, Morgan has offered no response.

Well, why would he?

The cheese stands alone.

2011-06-24T18:03:00.001-05:00

I've described how Schuyler tries so hard and almost succeeds in being just like everyone else, but within that "almost" lies an unhappy and oft-repeated story. That's never more true than in her relationships with neurotypical kids.

I'm going to just say it. I feel like this is probably my fault, mostly. There was a time, back when she was much younger, that Schuyler lived in a very internal world. In the months before and a year or two after her diagnosis, we were at a loss as to why she was so very very different, so very Schuyler. It was unclear just how much of her remoteness and ethereal quality was due to her lack of communication, and how much was from something more. More serious, more difficult to identify, more developmental in nature.

When Schuyler was old enough for school, and especially after we began looking for news ways for her to communicate, we made a choice, and it probably wasn't even a conscious one, either. We didn't worry about, or even consider, whether she would ultimately be happier simply growing up to be who she was, without forcing her into the world. We believed, as we continue to believe, that Schuyler had the ability to learn and to adapt and to one day live independently in the neurotypical world. Whether or not that was actually the most desirable goal never occurred to us.

Now, though, I'm not so sure. Did we push Schuyler to work hard, and to wish hard, for something that was ultimately going to be out of her reach, even if it is just out of her reach? I don't know. I still feel like anything less than a total commitment to the fight for inclusion, both academic and social, would be cheating Schuyler, but I'm no longer certain. I once thought that Schuyler's transition from her beautiful but mostly opaque inner place to the imperfect and sometimes cruel world of the rest of us was a mostly positive thing. She was smart enough to do it, she was ambulatory, she was socially precocious. If she could get close, what could be better for her? If Schuyler could become mostly one of us, surely we could all make up the difference.

Now I'm terribly unsure. I think perhaps I set her up to fail.

What do you do with a kid like Schuyler? More to the point, how do neurotypical kids roughly her age process who she is? She falls into a very specific crack, and it's no doubt a confusing space for typical kids to understand. I think most of them understand how to approach a kid with more severe (or perhaps simply more apparent) disabilities; kids are learning compassion from their families and teachers (or at least we hope they are), and they put that to good use with their disabled classmates. Likewise, I think they know how to navigate relationships with kids whose impairments are more superficial in nature. They know how to reach past those obstacles and reach a kid like themselves, and build relationships with those modest accommodations in place.

Schuyler continues to present a middle place, a child who looks and plays just like them, but for whom those standard rules of human interaction don't apply. It's not entirely, or even mostly, about communication, either. Schuyler presents as much younger, and frankly much stranger, than she appears, and it doesn't help that she has grown into a very tall girl, one of the tallest in her class. Schuyler can be very hard to understand in her entirety.

Grown-ups get this, and if you asked Schuyler to list the people she loves most in the world, almost all of them would be adults. But for kids, even those who know Schuyler well, she's confusing. She's happy and she wants to be their friend, but she's inexplicable and unable to play by the rules that they've been learning. It's not just communication, although that's part of it. It's also that she doesn't fit; she's not age-appropriate in some ways but ahead of her years in others. It's not anyone's fault, certainly not the typical kids who push her away. She's simply broken in ways they don't know how to accommodate.

This is inclusion's dirty little secret. It's a story I have heard from more parents than I can even number.

We've been having conversations with Schuyler this afternoon, trying to help her understand. How do you explain to a kid like Schuyler that because she's different (which she very much knows that she is), sometimes other people don't know how to be her friend? How do you get her to see the difference between a kid who doesn't know how to play with her and a kid who is being mean?

I'm not sure if she understands. She moves on quickly, so it seems like she's blowing it off, but then she'll mention some slight at a later time, perhaps days or weeks after. That's when it becomes clear that she carries all the little hurts with her, as if stuffed in her pockets. She doesn't obsess about them, but she doesn't forget.

I wish I had some answers.

F-Day

2011-06-17T11:43:00.003-05:00

R & S, a photo by Citizen Rob on Flickr.

This Father's Day weekend, I'm going to take it easy, maybe hang at the pool with Schuyler, get some barbecue with the fam on Sunday, that sort of thing. Not so much with the sitting at the computer, hopefully.

I did contribute to some Father's Day items elsewhere, however. I was one of the fathers quoted over at Love That Max: Why dads of kids with special needs rock, and you can read my thoughts on expectations for special needs dads over at Support for Special Needs: One Father’s Perspective on Father’s Day. So there you go, lots of fatherly pontification for the weekend.

Here's some interesting news as well. I'll be speaking at the Special Needs Mini-Conference at BlogHer '11 in San Diego in August. So stalkers and killers, go gas up your windowless vans and make room in your freezer for my head. I'll be easy to pick out of the crowd, I suspect.

Anyway, Happy Father's Day, everyone. No ties, please.

A story of distraction

2011-06-15T23:16:00.003-05:00

There's a story making the rounds, from North Carolina:

MATTHEWS, N.C. -- The mother of 12-year-old Jackson Helms said her son was removed from Elevation Church for being a “distraction” during their Easter service on April 24.

He has cerebral palsy.

She was supposed to meet with the church leaders to discuss what happened, but the pastor canceled the meeting when he heard she had contacted Channel 9.

We spoke with Jackson’s mother, Kelly Helms, today, and she says each day is a little tougher for Jackson than it is for normal children.

“Easter Sunday he got all dressed up, got ready to go, no small feat with a kiddo like him,” she said. But, right after the opening prayer inside Elevation’s sanctuary that Sunday, Helms said Jackson voiced his own kind of “Amen.”

“We were very abruptly escorted out.” Kelly Helms said.

Helms said a volunteer at Elevation took her and Jackson to the lobby to wait out the remainder of the service.

Helms said it was not a good feeling but saw an opportunity to contact the pastor with an offer to start a ministry for special needs children. She says the idea was rejected.

When Eyewitness News went to Elevation Church, an employee told us they focus on worship and not ministries.

But Elevation Church officials emailed Eyewitness News Wednesday night after our story aired. In a statement, a spokeswoman said "Everything we do is about ministry. We focus specifically on our worship and children’s ministries – and we partner with many other ministries in Charlotte."

The church statement continued to say "...this young man and his family were not removed from our church. They were escorted to a nearby section of our church where they watched the service in its entirety.".

Earlier Wednesday, the church issued a statement that said, “It is our goal at Elevation to offer a distraction free environment for all our guests. We look forward to resolving any misunderstanding that has occurred.”

Even though the pastor canceled the meeting with Kelly Helms, he called the Mecklenburg County ARC, an advocacy group for the disabled, and asked for special needs training for his staff.

When Channel 9 told Helms, she said this was the answer to her prayers.

I suppose that as a reader, you have to decide what the story is here. Because it seems to me that there are a few things at work.

Is this a story about the loneliness and isolation of parenting a child with special needs? That's the first thing that jumped out at me. I thought of this family, looking for spiritual refuge and instead finding a kind of judgment and rejection. I wonder about this mother, if she wondered why God would reject her and her son. I think the feeling that God has abandoned your child and your family occurs to just about every special needs parent at some point.

Is this a story about yet another failure of Christian values put to the test? How would the members of this church answer their bumper stickers? "What would Jesus do?" Is Jackson Helms a child of God? Does he have the same value in the eyes of God as a child with full control of his body and the ability to express himself "appropriately"?

Is this a story about overzealous disability parents making unreasonable demands of the world around them? Should the rest of the congregation be forced to endure the distraction of a child with CP in their midst, making a noise that they are unaccustomed to? There are a lot of people in the comments to that story that say exactly that.

"It seems to me that the Helms need to be the ones to get some sensitivity training on the rights of others (non-handicapped). A disability does not trump the rights of the rest of us, sorry. [...] I haven't said anything negative about the disabled child. I also have compassion for him and hope, as his Dad noted, that Divine Intervention will cure his condition. The problem is with his Mom and her lack of understanding that his disability does not give her special privileges over the rest of us."

"Why do you think that you have a "right" to inflict your kid or your dog or your parrot or whatever on other folks?"

"A "special needs child" is really no more different that a newborn baby. Constant need 24/7 noisy when in needs etc etc."

"If it was a crying baby, old man farting, or some redneck lighting up a smoke you all wouldn't mind kicking them out. Just because a child has special needs and is a bit of a distraction does not give him or her the right to make others peoples time at church uncomfortable."

"He was treated no different than anyone else who makes noise during service."

But of course, he IS different. He has cerebral palsy. And that difference isn't cultural or religious, and it's not one that he asked for. Most of all, it doesn't change his value as a human being, or his need for spiritual enrichment. For me and for my family, church is not the place where that's going to happen; a story like this just re-enforces that conviction on our part. But for Jackson and his family, the Elevation Church was the house of worship where they sought that experience. The church failed them, and it failed Jackson Helms because of his disability.

Jackson was removed from the service after making a noise. A single sound. But the sound he made was a "non-typical" noise, and that noise was deemed inappropriate for a house of God. If you consider the story carefully, you'll see how that's what it boils down to.

You can decide what this story is about, but I can tell you what it's NOT about. It's not about someone being disrespectful or distracting. It's about a mother making other people uncomfortable with the mere presence of her disabled son.

The fact that it happened at all is terribly sad. The fact that it happened in a church? You decide what that feels like to you. I find it unsurprising. But that's me.

Mermaid soul

2011-06-13T22:38:00.008-05:00

S, a photo by Citizen Rob on Flickr.

We are at the pool, and Schuyler is swimming.

If today were a Saturday or a Sunday, the place would be crowded, mostly with brash teenagers loudly claiming their territory. But it's late, just before sundown so the heat is ever-so-slightly less oppressive, and it's a Monday. We almost have the pool to ourselves.

Schuyler swims. Julie and I don't, not today, although one or the other of us usually will. Julie has just gotten home from work, a job she likes but which is sometimes more stressful than it should be. When she's home, Julie has the weight of the world on her shoulders, sometimes money and sometimes her health or mine but mostly the constant consideration and work and concern for her broken little girl. She shouldn't require decompression after work, but fairness isn't a right and that's just that. Today was a good day; Julie doesn't swim but instead soaks up the last bit of sun. I sit beside the pool as well, reading a book. This happens much less often than I care to admit, to my shame.

Schuyler swims, mostly alone. Something has changed since last summer, seemingly at once. Schuyler has always seemed fearless, but the truth is that until this summer, she was never entirely comfortable in the water. In the past, she loved to swim, but always with a hand close to the edge. The moments when she went underwater were always followed by a few sputtering seconds of recovery, hands flapping and panic in her eyes. Last summer saw some improvement, but still. There were Issues.

This summer has been different, and without transition. The first moment she jumped into the pool, she was entirely comfortable, and fearless. Now she leaps from the high walls around the edge with abandon, in a position resembling nothing so much as a jumping spider, pouncing on its prey in tv slow motion. She spends as much time underwater as her lungs can handle. When she swims, she keeps her legs together and does what Julie calls a dolphin kick but which looks to me exactly like the mermaids she loves.

After years of trying, Schuyler has found her mermaid soul.

There is another person in the pool, a shy little boy maybe a year or two younger than Schuyler. His grandmother watches him and tries to convince him to talk to Schuyler. Schuyler is all for this plan as well and invades his space with enthusiasm, but the boy is hesitant. We've seen it before, often when Schuyler is paired with autistic children in school or at conferences. For kids who are timid or who have social anxieties, Schuyler is kryptonite. She is a shy kid's devil.

The grandmother asks questions, but of course the pool is a place of vulnerability for Schuyler, without her speech device to answer for her. Schuyler wants to give her name, but she can't, and really, it doesn't seem to matter to the boy. He doesn't want to be left alone, exactly; as Schuyler swims and plays, he approaches her slowly, fascinated but confused by her, which puts him in league with basically the whole world, myself included.

Julie and I could get up and walk around the pool to be near the grandmother. We could make ourselves available to answer her questions, the ones she has been shouting to Schuyler in the fleeting moments that her head is above water. But we don't. We don't even discuss it; it's not a team snub. When we discuss it later, we discover that we were on the same page. Maybe we came across as impolite. Perhaps we actually were rude. It certainly wouldn't be the first time I've intentionally chosen to be chilly to someone, and not even in response to some perceived slight. The grandmother didn't do anything wrong, and yet we both chose to let her sit in her own confusion rather then enlighten her as to Schuyler's... schuylerness.

It's not something I can complain about, because I've clearly made something of a career out of it in recent years, but we don't always feel like we need to explain Schuyler. I've been more aware of it recently as I've been reading Jean Vanier and Ian Brown. We've spent so much time and energy trying to integrate Schuyler, and it's always been something that she has wanted. To fit in, to make her way in the typical world, these have been Schuyler's dreams, more hers if possible than ours, even. The fact that we've been unable to do that in some significant ways feels like one of the areas in which I have failed her the most. There's a lot I've gotten wrong with Schuyler, but perhaps my attempts to help her "pass" are the greatest. I'm no longer confident that it was ever the right thing to do, although she has certainly worked hard to make it happen, the thing she's wanted more than anything else in the world. She's always been Pinocchio, but there's never been much of a Blue Fairy to help her.

But lately, I've thought a great deal about Schuyler's right to exist on her own terms, without the pressure of a world in which she almost fits, but never completely does. I'm not talking about giving up on integration, certainly not in school, but at times like this, sitting by the pool and watching her swim like a sea creature, totally in her element, I understand that Schuyler doesn't need to fit. She doesn't need to talk, and we don't need to explain why she does what she does and can't do what she can't do. She only needs to swim, and we only need to watch, quietly and with something very much like peace.

Schuyler finally figures out how to reach the boy. She climbs out of the pool and up onto the wall, and she leaps fearlessly into the water, splashing down in her angry crab position. She swims to the surface and then points to him, a gauntlet playfully laid down. He smiles, maybe for the first time since she noisily entered his world, and then he climbs out of the pool and takes his place on the wall. He cannonballs into the water, and when he breaks the surface, he hears Schuyler clapping for him.

And that's it. Whatever connection they've been looking for has been made. The wordless girl and the shy boy take turns leaping from the wall. When they take the air, their anxieties remain behind them. They don't know each other's names or what grades they are in or any of the other questions that the grandmother tried to ask. They're not here to talk. They're here to swim.

When we leave, they wave to each other. "See you tomorrow," she says, although I have no idea if he understands her. I suspect he might.

Transitions

2011-06-06T23:58:00.000-05:00

Every family has its traditions. A few of ours are a little strange, I suppose. Some have nothing to do with Schuyler's disability. When a new monster movie comes out, for example, Schuyler and I always go to see it together. Always. This dates back to King Kong when she was five and has included such kid-friendly fare as War of the Worlds and Cloverfield. I haven't checked to see what Super 8 is rated yet, but I suspect it won't matter. We'll be there on Friday morning.

When traditions come from a broken place, though, they can still have their unique ceremony and their own kind of charm. We don't think of them as having anything to do with disability until later, if at all.

Today Schuyler came home from her final day of classes, backpack full of the detritus of the fifth grade. She took off her shoes and threw them in her closet, and I'll be surprised if they see the light of day again before September. We went through her stuff and read through the comments written in her yearbook by her friends and teachers. I was happy to see that they pages were mostly full.

And then, as we've done every year of her school life, we got out her speech device and changed a setting on a page of pre-programmed often-used phrases, now telling the world that she is in the sixth grade.

This year, we got to change the school, too.

"I am in the sixth grade."

Broken Phantoms

2011-06-05T11:53:00.006-05:00

R & S, a photo by Citizen Rob on Flickr.

We talk a lot about the "disability community", and it makes sense to think of ourselves that way. There's strength in numbers, after all, and where disability rights are concerned, it's almost always true that the rising tide lifts all boats. But the experiences that we have with our kids and our loved ones are very different, as are our perspectives and our philosophies. Like snowflakes and unhappy families, we're all broken, and enduring, in our own ways.

If there is any one particularly great experiential divide in our vast community, it may be that between the visually identifiable and the invisible disabilities. It's the difference between a kid in a wheelchair and one who is ambulatory but fighting organ failure; between a child with autism and one with the subtle but identifiable physical markers of Down syndrome; between a blind person with a white cane or a service dog and a deaf person with no visible hearing aids or cochlear implants.

It's the difference between a world of unwanted pity, and one of unwanted judgment.

The public face of disability is different for the visibly and the invisibly impaired, but they both suck the life out of the parents and the children who deflect, and educate on the fly, and most of all endure. I wouldn't trade places with the parent of the child with CP or Down, but that's less about comparing monsters (always a fool's errand), and more about sticking with the devil you know. I've never heard a parent say "I would trade situations with that person in a moment", no matter how broad the disparity. In a very real way, our children's monsters become our own.

Those of us who live in the outside, typical world have a burning desire to understand everyone we see, to KNOW, as if entitled, whatever we think is important about the people around us. I'm as guilty of this as anyone. When we have that information, which we have determined is entirely our business, we can then come to conclusions about the people around us, again as if we need to. We do it to our fellow typical citizens, certainly. And we do it to the broken among us as well.

So when we see someone with an outwardly manifesting impairment, it's tempting to conclude that their lives must be less than ours. Less enriching, less meaningful, and of less value. And we extend pity, because in the absence of a narrative, we've inserted our own, one in which we surely must be better off that THAT poor son of a bitch. It's a pity that is unwanted, and probably unwarranted.

But what do we do when we see someone who shows no outward defect, no physical stamp, no twist of the body as if from the hand of a spiteful God, no sculpted story on their blank faces? What do we do when we are faced with the howling child with the seemingly permissive parents? How do we respond to the older child with a younger child's mannerisms or trappings? Or the little girl who spins and plays as she walks and who speaks, when she does speak, in an alien tongue?

A friend recently recently wrote about a website called Too Big for Stroller. The premise is simple. People take clandestine photos of children in public places who appear to be too old or too big to ride in the strollers. The assumption is that these kids are the spoiled brats of permissive parents. It didn't take much searching, particularly in the comments of NBC and Salon articles about Too Big for Stroller, to find the stories of the broken children.

Some had diseases that robbed them of energy, so the only way to even go in public was to have a stroller as a backup. Some were weakened by failing organs. Some had invisible conditions that left them fragile. One parent told the story of the child whose high-tech wheelchair had malfunctioned and whose insurance carrier wouldn't pay for a loaner. The only way for this child to go out was in a stroller. The alternative for these families is to stay inside, at home, hidden away, or to spend a great deal of money for a wheelchair, exchanging scorn for pity. You pay your money and you take your chances.

And yet, the number of people who felt entitled to make assumptions and judgments was deeply depressing. And not all, or even most, were silenced once the possibility of disability was put in front of them. Adele Melander-Dayton, author of the dismissive and frankly cruel Salon piece (which referred to the site as "hilarious"), tweeted that her piece was causing people to "flip the f out". When I responded with my usual diplomacy and class ("Yeah, some of those 'flipping the f out' probably get sick of their kids with disabilities being mocked by douchebag hipsters."), it brought out this response from an anonymous treat of a tweeter:

"Because ALL seemingly-too-big-for-strollers-kids are disabled, and we are all mocking them with hate speech, right?"

And that's really the crux of it right there. We're not even going to pretend that NONE of them might be disabled, or even most of them. But however many kids with invisible disabilities might be made fun of or hurt by that site, they are acceptable collateral damage, because some of them are probably lazy kids with weak parents, and they must be judged.

And again, I've been guilty of that same thing in the past. I don't know anyone who hasn't, although I sort of wish I did.

We look, and we search within our own world of experience for a template, a perspective that makes sense of people who might otherwise be perplexing to us. When we don't find it, we render judgment. In doing so, we find the troubled autistic boy to be out of control, and his harried mother to be an irresponsible parent. We declare the exhausted child with the failing organ to be "Too Big for the Stroller". We hear the child speaking strangely and judge the parent for allowing their eight year-old to engage in "baby talk". We see the holes in what we know, and we spackle them in with our own insecurities, disguised as judgment fairly rendered.

"Your daughter is a beautiful child. Does not look at all like she was born with anything at all wrong with her. You are blessed."

I received this comment in an email just yesterday, from a very nice person who is reading my book. And she's right, we are blessed.

Schuyler is a beautiful child, much more so than any casual conjecture about my own genetic materials might suggest. She's beautiful, and she's unfailingly kind, and she loves with every cell of her gigantic heart. It's undeniably a blessing.

A blessing, but also sometimes a complication.

Schuyler has had teachers who believe in her, teachers who have worked hard with her for year after year. Her special education team has been tenacious on her behalf; her therapists equally so. We're confident that this will continue with her new team next year. As with any child, atypical or otherwise, the first step towards reaching Schuyler is understanding her. Understanding how she thinks, how she processes information, what she already knows, and how she can be reached.

But what of those who see her but don't understand? What of those mainstream teachers who may see her as a puzzle they never asked for, a challenge they don't wish to step up to? Someone else's job?

Early this year, we met with Schuyler's mainstream teacher, the one who was to teach her science and history and social studies. We expressed our expectations and our hopes for Schuyler. Even then, her response was to lay out the lecture-based plan she uses to teach, and when we expressed our concern that Schuyler might need extra help since she is such a visual learner, she replied that she probably wouldn't have a lot of time to do that. So we knew we were facing some challenges, and the year bore that out.

But at Schuyler's IEP meeting last week, when it came time for this teacher to give her report on Schuyler's academic progress and the work they'd done during the preceding year, she said that she hadn't really had the opportunity to get to know Schuyler all that well, but she was always affectionate and funny, and she did a great job of cleaning up after herself at lunch and was an enthusiastic helper in the classroom.

That was it.

Not a single word concerning academics, about how Schuyler learned in her class, or what this teacher did to help make the material accessible or what accommodations were made. The teacher seemed entirely unaware that she was even expected to teach Schuyler anything. From my admittedly very biased perspective, it was as if the concept of inclusion meant that Schuyler had a right to be parked in her class and to watch the other students, the REAL students, learn. Inclusion appeared to mean being a face in the class photo. Equating equal treatment with fair treatment sounds absolutely right, but that's only true if every student in your classroom has the exact same needs, and of course they do not.

We were shocked, and we were deeply, frustratingly and furiously disappointed, but we weren't surprised. We had been worried all year about this teacher, and we had reached out to try to help her, but in the end, she looked at Schuyler and seemed to see a lovable class pet.

A week later, I remain baffled by how this went down.

I guess it's easy to look at Schuyler and miss the peril she's in. It's easy to look at her and miss the monster. She's a pretty, energetic little girl with a winning personality and not an ounce of guile. She remains innocent to the point of naiveté, which is charming in some ways but also leaves her vulnerable to the world in a way that her outward toughness conceals. Schuyler's positive traits are so strong that her disability really can be invisible, unless you take the time to see, to really see, and to understand. When you do so, and when you project into the future, when she'll be just as far behind and just as in need of help but no longer a cute little girl, you can see just how badly she is wronged by faint praise and academic neglect.

In the absence of that understanding, it's easy to create your own narrative for her, and for us, I suppose. I know that for my own part, I can come across as a one-note tune, and something of a scold. I don't like that about myself, at all. But the thing that Julie and I have become acutely aware of this year, particularly recently, is how much depends on us. Recognizing how nice and pretty and cute Schuyler can be isn't advocacy. It won't save her.

Looking at Schuyler, it's easy to miss her monster. But it's there, and in some ways that matter a very great deal, it's winning.

A brief IEP update

2011-05-26T15:27:00.001-05:00

Having written about Schuyler's impending IEP meeting, I suppose I should give a brief follow-up. The short version is that it felt like a very positive meeting, particularly from Schuyler's special education team and her therapists. Her elementary school team did a great job of preparing a plan for her transition, and the team leader from her new school was outstanding. She was incredibly positive, and she listened to us, really listened. After the meeting she sat down with Julie and me for an extremely candid chat, and we walked away feeling like we'd been heard. For parents of a kid with a disability who are trying to navigate the public school system, that's no small thing at all.

That's all I really have to say about it for now, although there may be another post about one extremely troubling aspect of the meeting coming soon after Schuyler's last day of school, depending on whether or not Julie and I are still pissed by then. (Smart money says watch for it.) There are still a lot of anxiety-inducing aspects of the transition to middle school to keep us up at night, everything from mean girls to mainstreaming to marimbas, but coming out of this meeting, we felt some real excitement and optimism for the future. And again, that is no small thing.

Not Acceptable

2011-05-24T16:46:00.005-05:00

I think the most effective way to get people to stop using the "r word" is not so much to try to ban its use or impose some kind of embargo on it. That approach just seems to bring out the worst kinds of entitled, obtuse, "Fight the Man" arguments about what the word technically means and how we should just make the choice not to be offended, etc. Trust me, I know.

I like this PSA because it makes what I believe is a more effective point, that you ought to care how much your words hurt someone else, but even if you don't, calling someone a retard simply makes you look like a bigot. Or rather, it alerts the world that you ARE in fact a bigot.

Thanks to the Spread the Word to End the Word campaign (sponsored by Special Olympics and Best Buddies), and particularly to Lauren Potter and Jane Lynch. I like this PSA very much.

(I'm still not going to watch Glee, though. Sorry.)

Who She Is

2011-05-23T21:22:00.002-05:00

The Purple Ninja and Bughead
Originally uploaded by Citizen Rob

Tomorrow is Schuyler's ARD meeting. We'll meet with her school team and talk about her year, and plan the goals for next year with a whole new team at a whole new school. These meetings at this school are usually pretty straight-forward; unlike a lot of parents, we've never had to beg for services, after all. Until last year, they were mostly an exercise in formality. We were all on the same page.

It changed, subtly, last spring when the district diagnostician began her now-infamous quest to retest Schuyler's IQ in order to get a lower score, the score she believed would be more accurate, the one that would classify Schuyler as mentally retarded. She did so without dissent from anyone else on the team. Anyone but us, anyway. It was all done with the best of intentions, I know. But last year, we suddenly felt like we saw one little girl and they saw another. It was hard to objectively weigh their opinions, backed by professional detachment, and ours, loaded with overbelief but also a depth of experience unique to parents and family, a familiarity that can't be known to even the most dedicated professional teacher or anyone else who goes home at the end of the day and moves on at the end of the year.

Tomorrow we go back, and we're hopeful that we'll be back to a place where we're all mostly on the same page and we're approaching Schuyler for who she is, not trying to redefine her as something that fits more easily into a box or a checklist or preconceived idea. That's what we hope for. That's also the expectation we try to bring, with a kind of polite fierceness.

None of this changes who Schuyler is. And it only changes who she may become if we let it, if any of us who work for her do so with the intention of making her fit. She HAS to fit, and yet she CAN'T fit. If that sounds like an unresolvable paradox, you're right, you're absolutely right. If it sounds like a familiar unresolvable paradox, I'll bet you're the parent of a different child, a broken child, like ours. Flawed and neuro-atypical, and yet unique and all their own.

Schuyler is who she is. If you want to know her, you don't need a diagnostic tool or years of impressive yet often irrelevant teaching experience. You need only to watch, and listen, and learn.

You'll figure out quickly that she wants friends, she wants them more than anything, even if they are in fact the hardest thing in the world for her to have, more difficult to acquire even than that goddamn marimba.

You'll learn that she has some unshatterable loves. Root beer. Lady Gaga. Dogs. Squinkies. Chick-fil-A. Fake farts in the bathtub. Summer spent in the pool. Painting her fingernails. Sea monsters and mermaids. Maxie. Referring to the police as "The Fuzz", "The Po Po" or "Johnny Law". Rattle-the-windows thunderstorms. Hot-air balloons. Mismatched socks.

You'll learn that she moves like the Tasmanian Devil, never in a straight line, rarely gracefully, and with a casual disregard for the personal space or safety of the people around her. You'll see her boundless energy, and you might envy it even as you worry about the breakables on the shelves around her.

You'll discover how important family relationships are to her. You'll watch her figure them out, like a complex cast of characters, and you'll see how she obsesses when something doesn't fit, like the one dead grandparent she'll never know. You'll see how much she wants the sister than she'll never have, the one she CAN never have.

If you watch Schuyler write, you'll see that she is behind her peers, but you might also see how her mind works in ways not devoid of logic. Sometimes, very very occasionally, you'll see a kind of Martian poetry in her written words.

Schuyler loves disguise. She hangs onto all her old Halloween costumes and mixes their parts. She loves wigs and masks and capes and hats. It is tempting to think that she is trying to be someone else, trying to adopt another identity, but really, I think most little girls her age are exactly the same way.

Schuyler is never jaded. Ever.

Spend some time with Schuyler and you'll find that she loves games, even if she balks at the rules. She plays Uno but hates to lose. She loves Rock Paper Scissors, but if she falls behind, she's likely to pull out something like a fist with her thumb pointed up ("Bomb"), or wiggly, menacing fingers ("Tarantula"). She loves to play "Real or Pretend", especially when there are qualifiers. Mermaids and fairies and angels and dragons are pretend. Dinosaurs are real. Dinosaurs that walk around eating people in the street are pretend. Cats are real. Talking cats are pretend.

Monsters are pretend. Except when they're not. She's ready for those, too.

Just another manic Doomsday

2011-05-20T23:09:00.008-05:00

"No man has learned anything rightly, until he knows that every day is Doomsday." -- Ralph Waldo Emerson

It's a popular trend at the moment to make fun of all the folks (a surprising number, honestly, although I don't believe I know any of them personally, perhaps not so surprisingly) who believe that tomorrow will bring the End of Days. And I'm not going to lie, I've been enjoying it just as much as the next smartass. Large scale kookery is a gift for snotty people like me.

But then, it's worth noting that I get a pretty regular stream of email and comments from Christians who seem to take it personally that we're not raising Schuyler to be a Christian. Some of you take it almost as a given that this represents a failure in parenting. I am challenged regularly on whether or not it's fair to Schuyler, denying her a Christian life or a church family. Oddly, I never get emails from Jewish or Islamic readers asking why I am denying her the experience of their faith. But there are more than a few Christians who behave as if they are entitled to take a stab at bringing my child into the flock.

It even happened at Schuyler's school recently. I caught some grief from Christian readers a couple of years ago when I expressed displeasure because a teacher gave Schuyler an angel sticker, leaving us to explain what that meant. Those same folks will be equally irritated to hear that we were deeply annoyed a few weeks ago when one of Schuyler's public school teachers told her that when people die, they turn into angels and go to Heaven.

"What's the harm in that?" I can already hear it. We're overreacting, they'll say, just like they did before. They can't see that it's problematic for us because suddenly we are put in the position of having to address issues of religion and faith with Schuyler, not because we think she's ready (because she's absolutely not), but because someone else decided she is. It doesn't matter that we are her parents. A higher power is calling, after all. And to a Christian who believes all this, it doesn't seem unreasonable at all, I suppose.

If you've grown up with it, the basic points of the Christ story seem perfectly plausible. I keep reading how mainstream Christians are upset about this rapture thing because it makes their religion look ridiculous or even cult-like. The Bible says we can't know the day or the hour that the Apocalypse will arrive, after all. Christians don't want their perfectly reasonable faith being tarnished by silliness.

But here's the thing. To those of us who aren't believers and who aren't raising our kids as Christians, it's no more or less silly than the rest of it. It's hard for us to distinguish how a virgin birth or a resurrection story are perfectly believable, but the end of the world? That's just crazy talk.

The difference with the rapture, particularly when you attach a date to it, is that unlike the rest of the stories, this part is empirically disprovable. If you're reading this on Sunday, you already know that it was bogus. (If you're actually waiting until Sunday to declare its goofiness, I salute your objectivity.) It's uncomfortable for some Christians because it's easily dispatched with.

We are an agnostic family. That's how we're raising Schuyler, which (in addition to not being a threat to Christianity) is our choice and our privilege, just like any other family. That we are doing so in a very Christian community is a challenge that we've knowingly taken on, but non-Christian families do the same thing all over the country, and they all face this kind of thing on some level or another. It's not a tragedy. It's not a burden that we bear. It's a pain in the ass, at the very worst.

But if the idea of the holiest of you flying up into the air tomorrow strikes us as amusing, that's just the price you're going to have to pay. You've made your choice, which to us looks no more or less valid than choosing to worship Odin or Zeus or a character on a box of breakfast cereal. To you, my choice seems sad. To me, yours looks silly. I don't see that changing any time soon. Maybe on Saturday, but I'm not holding my heathen breath.

Seeing God, perhaps

2011-05-14T01:01:00.015-05:00

Arrr.
Originally uploaded by Citizen Rob

"[We] see the face of God within the disabled. Their presence is a sign of God, who has chosen [quoting St. Paul] 'the foolish in order to confound the strong, the proud and the so-called wise of our world.' And so those we see as weak or marginalized are, in fact, the most worthy and powerful among us: they bring us closer to God." -- Jean Vanier, "Our Life Together"

I didn't know what to think the first time I read these words by Jean Vanier. They were quoted in Ian Brown's The Boy in the Moon, an extraordinary memoir written by the father of a profoundly disabled son. Brown's story is different from mine; his son Walker's disability is as extreme as Schuyler's is subtle. And yet in reading his words, I am struck by the similarities in our feelings about our beautiful broken children, extending even to some of the language we use as descriptors.

(Ironically, we differ slightly on the now-tiresome "r word", which he uses in some circumstances not related to people. But while I choose not to use the word as he does, I also recognize the unique position of the special needs parent to repurpose words like that, and the guilty pleasure that comes from the reactions of typical parents when faced with this forbidden word from the mouth of such a parent. I totally get that.)

When I read the quote by Vanier, it felt a little like some of the well-meaning but pretty uniformly awful things we've been told for years, about how kids like Schuyler are here to teach the rest of us something, or that she came into our lives because we were super special wonderful parents, or that God never gives us more than we can handle. (That last one is particularly heinous; ask any parent of a different child, and they'll be able to name people of their own acquaintance who have been given much more than they can bear, whether by a cruel God or wicked chance.)

But when you look deeper, it makes a kind of sense. A writer friend of mine was raised as a Quaker, and to her it was completely familiar. To the Quakers, God is a light that exists in every human, an intrinsic quality rather than an external force (ie. grumpy man in the sky, bossing everyone around and breaking stuff when he gets mad). We find God by seeking that light in others. Finding it within those whose lives seem the most remote from our own, and relating to those people instead of marginalizing them or running, that's a real path to seeing God.

I like that. I'm not sure I subscribe to it from a spiritual perspective, although it feels valid to me. My own spirituality runs outside of religion, as you probably already know. Recently, I received another critical remark about my beliefs. "The atheist pulling out the phrase 'Child of God' only when it suits you is so very distasteful." Of course, I have never claimed to be an atheist, not once, but there's a certain amount of dismissiveness that comes in response to calling oneself an agnostic. This commenter doesn't think I'm an atheist. But she does know that I'm not a Christian, and in her eyes, that's not all that different from believing nothing at all. Not being a Christian is offensive to a great many people, as is the idea that Schuyler isn't here to teach us all how to be better people.

For his part, Ian Brown doesn't believe that his son Walker represents the face of God. He sees instead the face of what it means to be a human being, both in his son's beauty and his brokenness. He sees the depth and complexity of his own love for his son, who has taught him (and I can't tell you how much Julie and I love this phrase, or how many times in the last week we've quoted it to each other and have wanted to quote it to people who are in our world and yet very much not) "the difference between a real problem and a mere complaint". For him, his son is a mirror.

I like that, too. In the faces of kids with disabilities, whether extreme like Walker Brown or mostly invisible and insidious like Schuyler, we are presented with the opportunity to truly explore what it means to be human. Brown says that Jean Vanier believes the severely afflicted force us to face two difficult questions. "Do you consider me human? Do you love me?" He believes, as I adamantly do as well, that as we meet people with disability in their own world, our answers to those questions evolve and solidify. We start, shamefully, with fear, of their appearance and the way they behave, and, I'd suggest, of the proof of the frailty of being human and how it can strike any of us, particularly our children. We move on to pity and to the stage where we help them and show them respect, but still regard them on some level as inferior.

It is only when we enter into real relationships of authentic depth that we are transformed by the broken among us. It is then, Vanier believes, that "they bring us closer to God".

As an agnostic, I nevertheless believe, on some level, that this is true. God? Maybe. It certainly brings us closer to understanding the truth of humanity, the hard-to-grasp reality that all of us have worth, and that worth is intrinsic, not something determined by the rest of us, or by an outside divine force. Other cultures understand that better, I think. In shamanistic societies, children who would be diagnosed as autistic or developmentally delayed or ADHD and medicated within an inch of their lives in this country are identified and groomed from an early age to serve as shamans, holy and in touch with the universe on a unique plane that is denied the rest of us. Is that wrong? Is it ridiculous or primitive? Or does it recognize a fact mostly lost on Western society, that even the most profoundly broken among us have value, and it is up to us to see that, not them to prove it?

In an interview with NPR, Ian Brown said something that hit close to home for me. It felt like truth, a cautionary truth.

"I think a disability masochist is somebody who made the decision to make their disabled child the most important thing in their life and the only important thing in their life. And they commit to that position and then when reality suggests there are other decisions, they get angry about it. It's like anybody who concentrates on one point of view and only one point of view. If you contradict them, they get nasty. You see it in political life every day. You often hear from these people something that drives me mad. It's one of the reasons I didn't want to write a book like this, and one of the reasons it took me so long to write the book was because I didn't want to write a 'misery memoir.' These misery memoirs, in addition to being badly written, you get the same sentimentality all the time: these are very special children, given to very special parents, by a very special God. The God thing is not often there, but it's often tacked on. And I think to myself, if Walker is God's idea of a gift, then God needs to read Emily Post. Because a jar of jam or a bottle of wine would have been fine, thank you very much."

I fear very much that I have become what he calls a "disability masochist", although honestly, I wonder sometimes how one avoids that trap. But for me, in ways that are probably much more difficult for parents with as impaired of a child as Brown has, it's more complicated than just making my disabled child the center of my life. I have done that, but it's not always or even mostly about her disability. In part, it happens because of the all-encompassing, complicated, enriching but enslaving love I feel for Schuyler. I suspect it's also because in trying so hard to understand the things that she desperately wants to tell us, we pay much closer attention to Schuyler than most parents do to their typical children. Schuyler doesn't have throw-away statements or everyday sentiments. We listen with every ounce of attention that we have, we strain to understand, and in doing so, we are treated to peeks inside a place unlike that of any other person in the world. Perhaps literally so.

There are moments, fleeting and wonderful, where it is possible, not to forget exactly, but to put Schuyler's disability into the background. It's always there, but sometimes it's unimportant, and what we are left with is a very simple (but of course not simple at all) joy of her existence. We can stop trying to make her fit and just experience who she is.

It happens, although the world has a funny way of popping that bubble. Last night, as we ate dinner at a fast food place, Schuyler was unusually joyful and chattery. I love when she's like that; I rarely try to stifle her in those moments, even when I can see, as I did last night, that she is drawing attention. This time it was a little girl, a few years younger than Schuyler, sitting at the table next to us. As we got up to throw away our trash, I heard her ask her father if Schuyler was retarded.

And thus the world pushes back in.

Schuyler and her broken friends aren't a gift, from God or anyone else. They exist on their own terms, as human as you or me, but they do give us the chance to look into something bigger, God if you like, or perhaps simply our own humanity, with all the ugliness and beauty inherent in our selves. We have a choice, whether to listen or to step back in fear and ignorance. I can only say that one of those choices is, even to an agnostic like myself, indescribably miraculous.

Same as it ever was

2011-05-12T00:38:00.000-05:00

Wired
Originally uploaded by Citizen Rob

So the results of Schuyler's EEG are in, and they are... exactly what I thought they might be. She had no seizures during the 72-hour EEG, as we suspected. The choking incident wasn't triggered by anything neurological, and no seizures were recorded during waking hours. We haven't observed anything suspicious since probably a week before the EEG, so we weren't surprised. It's not the neurologist's fault. Schuyler's monster is apparently on Spring Break.

Well, that's not entirely true. 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.

Anyway, the neurologist believes that what we've observed in the past sound very much like seizures, so we'll continue to watch for them and continue to wait and worry and all that. We know a little more about what's happening inside her brain, but not much, and life goes on very much like it did before, with an amazing and puzzling little girl who inspires awe and love and fear and insecurity and who reminds us, in the words of Ian Brown, that some things in the world of a broken child are real problems, and some things are mere complaints. Some of you have expressed how hard this all must be for Julie and I, and we appreciate that. But we live every day with Schuyler, and our lives are enriched immeasurably by her presence. So perhaps we feel sort of bad for the rest of you who are Schuylerless.

Incidentally, we got a bill today from the neuro, asking us to pay a part that wasn't covered by insurance or the deductible we paid, a whopping sixteen dollars. I think we can scrape that together. As a result, however, we saw how much WAS covered by insurance. Almost seven grand, folks. That a lot of coin just to see Nighttime Brain Pops. Why, that's enough to buy Schuyler her practice marimba for band next year, four times.

That's a lot of marimbas, friends.

Just a word.

2011-05-05T14:42:00.021-05:00

The world is just bound and determined to make me take a stand on the "R Word", isn't it?

The short story of why this came up this week is this: An old friend from high school had a comment thread going on Facebook, about politics and Osama bin Laden and all that, and another person from high school took the opportunity to insult all of us Liberals with a term cleverly derived from the word "retard". When I called her on this, a few people voiced similar opinions of distaste for the word, at which point another old friend surprised me by suggesting that the use of the term was fine in a political context, particularly by someone who had served in the armed forces in the past. "SOMEBODY here wanted to make this whole thing about him and/or his family," she said about me, "and the rest of you joined in for the stoning by making this an issue about special needs kiddos."

Here's how I responded, in the moment:

I'm sorry, I like you, but you don't get to decide who is offended by a term like "retard". You don't get to decide if that awful word and the associations that accompany it are acceptable in a public discourse, about politics or anything else. You don't get to decide if the families who face that kind of crap EVERY FUCKING DAY need to get over ourselves. You don't get to decide that context makes it okay to use a word that gets thrown around in reference to kids who can't even defend themselves as an insult to anyone. You don't get to decide that my child and tens of thousands like her are acceptable as punchlines. If you don't understand why YOU don't get to make that decision, then I simply don't know what to say. It's not about politics or freedom of speech. It's about being a goddamn decent human being.

Now, the person who made the original comment wasn't someone I'd ever been friends with in high school. Frankly, she was an idiot* back then and she has apparently committed to that state of affairs for the long haul, bless her heart. But the other person was someone for whom I actually have a great deal of respect. It was a harsh reminder that even among the good at heart, there are blind spots where disability is concerned. Or at least the use of that one loaded, terrible and stupid word.

*(Edited to add: Yes, I know. "Idiot" is kind of the same thing, from like a hundred years ago. I would no doubt be considered quite the scandalous cur in 19th century parlors and sanitoriums.)

In the past, I haven't really wanted to make much of the whole "R Word" issue. I know it means a lot to others, and I totally understand, but I thought it would be possible to take a more nuanced position. I'm a special needs parent and advocate, yes, but I'm also a writer, and the idea of "banned" terminology doesn't sit easily with me. And honestly, it's a word that over the years, I have had to work to keep from coming out of my own mouth, and particularly in my past writing. I'll confess to that. I wasn't offended by Tropic Thunder; on the contrary, I felt like it was satirically taking issue with movie actors who cynically use disability roles to boost their careers. And I've always felt that when someone outside the disability community uses that word, much like when white people use the "N Word", the person ultimately damaged in the eyes of the world is the user more than anyone else. Try using the word "retard" in a job interview and see where it gets you. You'd might as well wear a swastika on your head.

I wrote about this once before when it came up in regards to my daughter. Back in the spring of 2009, the school diagnostician wanted to give Schuyler another IQ test, one that would, in her opinion, give her a new and more accurate number. That number would classify Schuyler as mentally retarded.

We chose not to allow that test, and I think I can say with absolute certainty that we never will. But the conversation put something on the table, something undeniable, and once placed on the table, it never really goes away.

"In a range consistent with mental retardation." Retardation. Retarded. The "R Word".

Retard.

I have a little exercise for those of you who aren't a part of the disability community. I want you to say that word. (I'm not going to call it the "R Word" any more. If you want to use this shitty word, let's own it.) I want you to say it out loud to yourself. "Retard." (If you're at work, you might want to wait until later.) See how it feels, just as an independent word without context.

Now I want you to scroll down and find a photo of Schuyler. Look at it and say it again. "Retard." Because whether or not we ever allow a therapist or a teacher to attach that label, it's one that is already being tossed her way, and has been since she was very young. So try it. Look at her and say "retard". How does the word taste in your mouth now?

Now I'd like you to google terms like "developmental disability" and "Down syndrome", and go look at some of those kids. Look into their eyes and say "retard".

In each of these scenarios, try to assign yourself a number. Imagine how many times you think any of these kids has heard the word "retard". Now line up all the people who ever said it to them and then put yourself at the back of that line. What do you want to say to the person ahead of you? What about the next person who gets in that line behind you? How long do you think that line would be for adults with developmental disabilities?

Now, just for kicks, pull out a photo of YOUR kid, or your nephew or your brother or sister. Doesn't even have to be a kid, just someone that you love fiercely and would defend with everything you are. Look into their eyes and say it. "Retard." Imagine it's not you saying it, but someone else, some other person. Maybe a stranger, maybe someone you know and even like and trust.

Now imagine that other person trying to tell you that you're being overly sensitive, you're being "PC", that they have a right to use that word however they want, that it's okay in a certain context such as politics. Imagine they're calling you or someone else a retard, but instead of hearing that as a random insult, you associate it with someone you love, and that association is, by design, intended to be devastating and intentionally using your loved one as a benchmark for extreme stupidity.

Now, repeat this exercise until you want to break something, until you want to burn down the whole world.

That's how it feels to us when you use the word "retard".

Do I sound like a one-issue guy? I know that I do. I hate that I've become that person, and I hope I won't be forever, but yeah, maybe I have. I was once a fairly active political creature. In college, I once stood outside the death house in Huntsville protesting an execution. I even worked on the Paul Simon campaign, and how many people even remember who that was? I also used to bring the funny, or at least I thought so. And I used to write a great deal about music, which is what I thought the focus of my life would always be.

But this is it. This is who I am now. Every day, I feel the rest of it being put away, being filtered out, and what is left is a father with a broken little girl. And I get that wrong, a lot, but when I get it right, I am momentarily the person I am supposed to be.

There are people in this world, and I'm actually thinking of the parties involved in this particular incident, who have single issues dominating their lives as well. Some of them have served their country in the armed forces; others have children who are doing the same, and for them politics is very personal. Their passions come from those single dominating issues, and I get that.

But that passion, or that service for that matter, it doesn't give you license to use kids like Schuyler as insults or punchlines. You have a right to call me stupid because of my beliefs, absolutely. But you don't have license to say that I am so stupid that I am on the level of a child with a developmental disability, MY child, OUR children, as if that is the worst thing I could ever fear to be. You don't get to portray yourself as a child of God while you throw the most defenseless of us under the bus to score some point in a ridiculous Facebook comment thread.

Not without me calling you on it. Not without me at least giving you the option of looking into your own heart and deciding if you like what you see.

Monster trap

2011-05-02T17:59:00.013-05:00

There's a lot to say about Schuyler's ambulatory EEG, I suppose, but perhaps the most important, at least at this early stage before we get any actual data from the process, is simply this: The glue came out of her hair without any of the trauma and irritation that we experienced last time.

Maybe it was new glue, or the fact that the tech appeared to have used less of it, or it may very well have been due to the good advice of the removal tech this time. (Apparently the key is to apply a liberal slathering of conditioner to dry hair and leave it on for a while. Half an hour worked well. Last time, we were advised to just comb out the hardened glue. Seriously.) Whatever the reason, the glue mostly washed right out, and the residual bits were easily removed thanks to the tiny little hair rake we had left over from a recent head lice false alarm. There are some ugly little abrasions on her forehead from the sensors, but those should go away quickly. I tip my metaphorical glue-covered wire hat to the neurology team, and to the industry that has clearly done some work in this area in the past two years.

As for the results of the test, it's obviously too early to know anything. The procedure wasn't much different this time, but there were some key additions that changed the overall feel of it. We didn't have to take Schuyler to the neuro office, for one thing; they came to our place and wired her up here. The primary reason for that home visit was to install a pair of stationary cameras, one pointing at her bed and the other parked in front of the couch, ready to capture any seizures that might occur. It was a strange experience, having a camera pointed at us 24/7 like some sort of very very very boring reality tv show.

Schuyler was more aware of her appearance this time around. When we went to Target to find a head scarf or a hat (or, as it turned out, both), she cowered behind me sadly, trying to keep from being seen. Schuyler's disability has always been an invisible one; her sudden experience with visual difference made me realize all over again that in some ways, she is a very fortunate broken little girl.

On Friday evening, Schuyler had an awful choking experience, maybe the worst ever. It wasn't with any forbidden food, either. I was sitting beside her but didn't notice immediately, so I have no idea if it was preceded by a seizure. I do know that the camera captured me at my very least impressive, freaking out over the whole thing, but I assume it also captured me reaching into the back of Schuyler's throat and dislodging the piece of food that was choking her, so perhaps I won't make the asshole reel after all.

Aside from that, I am oddly saddened to report that Schuyler's brain was, to our knowledge, happy and healthy all weekend. We watched lots of flashy tv and stayed up crazy late, but the monster didn't seem to take the bait. I'm hoping that perhaps we just missed a seizure, which is, again, a strange thing for a parent to say.

That's the thing about this process. The one thing we want to hear -- "Your kid is not having seizures." -- is the one answer we can't get. We might possibly hear that she had one; we will most likely be told that she didn't have one during the 72-hour window of the EEG. And we'll go on wondering, and waiting to see if something with bigger claws and sharper fangs decides to show its face.

And through it all, Schuyler will continue to do what she does. She'll wear funky clothes and play Mariokarts and listen to Lady Gaga. She'll go to middle school next year and become a drummer girl (Jesus Howard Christ, remind me to tell you about the practice marimba we need to get for her), she'll make friends there, she'll make frenemies and she'll sink or she'll swim. She'll grow taller if possible, and prettier if possible, and she'll attract more looks, not just from rude adults wondering what's wrong with her but also from those boys who might simply see a girl.

Once unaware of the monster along for the ride in her head, and now just unconcerned, Schuyler will persevere, because that's who she is. I don't even know if it's ever occurred to her to give up.

The comfort of cold comfort

2011-05-02T15:40:00.005-05:00

"Tonight, I can report to the American people and to the world, the United States has conducted an operation that killed Osama bin Laden, the leader of al Qaeda, and a terrorist who's responsible for the murder of thousands of innocent men, women, and children."

I watched the president say the words that I honestly never thought I'd hear. Not like that, anyway. I always figured we'd find bin Laden the same way we found Joseph Mengele. Sometime in the future, we'd get a tip that bin Laden died peacefully in his sleep some years before, and we'd find an old grave and analyze the bones, and that would be that. A footnote to history, and nothing more.

Instead, it went down exactly like most Americans hoped it would. And while I don't have much to add to the volumes of opinion making their way to the Internet today, I thought I should at least mark the moment, fraught as it might be with complicated emotions.

I sat in front of my television and watched the celebrations that began last night, the chanting of "USA! USA! USA!", as if we'd just won Olympic gold instead of killing another human being, albeit an undeniably evil one. In my head, I knew that this was wrong, it was barbaric and not much better than the crowds in faraway places who cheered and danced in dusty village streets to celebrate the carnage of September 11th.

But in my heart, I felt the same way as those who were celebrating. I felt that same visceral, tribal satisfaction. And now, even in the cool consideration of the next day, I find that, try as I might, I can't truly fault the cheering Americans for whom bin Laden's death serves as a proxy for all the things that should have come out of our long, sad national response to 9/11, all the simple plans that turned out to be incredibly and unpatriotically complicated, all the battles that should have been won but instead just led to more war, and all the sacrifices to the cause of "national security" that instead of making them safer, just made them less free.

Killing bin Laden doesn't change any of that. But it feels like it should, and for now, that'll have to do.

Wired

2011-04-29T16:55:00.001-05:00

Of Monsters and Monkeys

2011-04-26T22:34:00.001-05:00

Schuyler invited me into her room to hear a story she was going to tell some of her toy friends. I grabbed the Flip camera and just started shooting.

What you have here is basically about ten minutes of Schuyler being Schuyler, assembling her rogue's gallery of monsters and monkeys and making up stories about dinosaurs and sock monkeys. She didn't actually tell much of a story, aside from an exciting sock monkey fight sequence towards the end, but it's still a good example of what it is like to listen to Schuyler express herself without much in the way of prompting or direction.

I thought about trying to do subtitles, since Julie and I together can decipher most of it, but I don't know. Part of the reality of visiting Schuyler's world, both the charm and the frustration, is the work that you as the listener must do to understand and follow her.

So instead I give you the first line of her story. It makes sense, if you think like Schuyler, which I try to do every day, in my own way.

"One thousand years ago, dinosaurs were dead. They were SO white, like this dinosaur."

Escape in chalk

2011-04-24T21:36:00.008-05:00

Tomorrow, we see Schuyler's neurologist.

Today, sidewalk chalk.

Julie drew tulips.

I drew a grass monster.

Spring

2011-04-20T23:41:00.004-05:00

I have a love/hate relationship with spring in Texas.

I love it for the storms that roll in during the late afternoons, setting off a flurry of emailed warnings and text messages and little tornado icons in the corner of every local television broadcast. Giant walls of clouds shamble in from the west, flashing lightning and setting off car alarms with great grumbles of thunder. The tornado sirens wail in the distance, cranking up a few seconds apart as they're triggered in town after town, running from Frisco and Allen to the north, down through Plano and Richardson, slightly out of sync so that they sound like a choir of tormented ghosts. After a while, the wailing stops, and for a brief moment I am disappointed that the danger is over.

But no, the siren has stopped so that the monstrous voice can intone, clearly and with divine authority, "Seek shelter immediately! Seek shelter immediately!" And suddenly I am thrilled again, feeling that tingle that suggests that the world might still be an exciting place, and it might carry danger and death, or it might just be full of lightning and thunder and waves of horizontal rain from time to time. I ignore the mathematics of tornados, because if I think about the incredibly remote chances of actually experiencing one, even in Texas, then I'll be aware that it really is just rain, and thunder and lightning, full of sound and fury, signifying nothing.

I love the storms, as only a renter can.

I kind of hate spring, too.

Spring is the season of IEP meetings, where we stretch Schuyler's monster out on a table and examine it, looking for signs of weakness that might be exploited, places where its hide might be pierced, even though every year we find that it is as inpenetrable as ever. Every spring, I find the enthusiasm and the "Why not?" of Schuyler's school has diminished just a little more, and the pragmatism and the downturned eyes and the "Here's why not..." has grown a little stronger in the passing year.

No one's talking about graduation anymore.

Spring is the season of the TAKS test, the Texas manifestation of No Child Left Alive, which for special needs kids invariably means "the test that you spend weeks preparing for even though you are probably going to fail it and no one believes you can pass it anyway, but Jesus Howard Christ, we are going to be ready for this motherfucker anyway, and sorry all your typical friends passed it but you didn't, but then again, you're DIFFERENT, and this is one more solid illustration of exactly how much that ISN'T a good thing, because you're not in Holland, you're in a place where you are measured against neurotypical kids, and it's not fair but it's the law, so let's take this shitty test, shall we?"

Schuyler did not pass the reading or math portions of the TAKS, we learned today. She didn't even come close.

I didn't tell her. I'm not sure if I ever will.

Well, I'm not so much worried about what comes next. Julie called the school principal (because we are Those Parents) a few minutes after I got the call from Schuyler's home room teacher telling me the bad TAKS news, in tones suggesting that the very best moment she could imagine in her future might be the one in which this phone call was over. The principal was supportive and reassuring, as she has always been.

I don't believe the school would try to hold Schuyler back from moving on to the next grade level, especially since I believe that their goals for her have shifted subtly from "she's going to graduate one day" to something more like "we're going to do the very best we can to teach her by exposing her as much information as we can, and maybe, just maybe, she'll absorb enough that her future will be, well, we don't know exactly, but maybe something good". They've become realists, in ways that we as Schuyler's Official Designated Overbelievers cannot.

I hate the test because it re-enforces something that Schuyler already knows. It tells her not to overbelieve. It tells her, and her teachers, and us, and I hope she refuses to listen but I wonder.

Spring is the season when we talk about all these things, and so in a very real sense, it's the season in which I despair.

This spring has been harder than most, with the added factor of possible seizures, the ones I've written about so much that I just don't want to anymore, and which will hopefully get THEIR spring portrait taken soon by Schuyler's neurologist. It's been hard for Schuyler because she's scared and frustrated and confused, she doesn't understand what is (maybe) happening to her body and her brain, which she thinks is mad at her. But her anxiety passes, and she finds joy in the world around her. She is anxiety-free ninety percent of the time, which I find comforting, even though last year it was probably ninety-five percent. I try not to project what next spring's percentage might be.

Of my own percentages, I dare not stop and take measure. Over the past six months or so, I have found that if I keep moving, if I just focus on Schuyler and try to toss the occasional bone to the dogs in my head so they don't bark so much, I'm okay. And that's enough for now.

One thing I love about spring is how it promises summer. Schuyler becomes impatient with school in a way that is extremely typical, I suspect. She begins asking about the pool, which inexplicably won't open for another few weeks, and when we walk through Target, she gravitates toward the swim suits, begging for a new one even though she simply cannot choose just one that she likes. Her skin already starts tanning, although this year she is left with strange little pale rings on her arms from the wristbands that she wears to discreetly address her drooling. She sees commercials on television for the newest roller coaster at Six Flags and says "Oh yeah!" before breathlessly begging to go, soon, tomorrow, now.

Schuyler's feelings about spring are pretty simple. She experiences spring and she thinks of the future. Unlike me, it doesn't scare the hell out of her. In that respect, I envy her, deeply.

Quiet Girl

2011-04-12T18:52:00.002-05:00

I would liken you
To a night without stars
Were it not for your eyes.
I would liken you
To a sleep without dreams
Were it not for your songs.

-- Langston Hughes

Waiting for Polly

2011-04-10T01:24:00.004-05:00

Superhero
Originally uploaded by Citizen Rob

This is what we do now. We watch Schuyler, and we wait for signs that she's having absence seizures, or not having seizures, we wait to know if she's going to be okay, or in what ways she's not. This is who we are now, both of us. I'm not an author, I'm not a father or a husband or a friend or whatever else. I am a watcher. It feels like it's all I do now. And honestly, at least for the past few months, it really sort of is.

Tonight, I saw Schuyler have an absence seizure, I think. I don't know, because without an EEG being administered, and administered at the right moment, we can't know for sure. But tonight, as we shopped at Target, I looked down and noticed Schuyler staring in front of her, mostly motionless except for a very very slight movement of her mouth that I may very well have imagined. I only observed her staring for maybe five or ten seconds, but she could have been doing it for a little longer. After she came back from whatever place she was visiting, she was drooly and crabby and seemed confused for a few minutes. Then she shook it off. Shortly after that, she suddenly needed to go to the bathroom. She went again before we left the store.

Later, after we got home, she suddenly ran to the bathroom again, this time having a very small accident before she got there. Neither of us were watching her that time, but based on her behavior after, I suspect she probably had another absence seizure.

Schuyler is confused by the ways that her body is suddenly betraying her. She doesn't understand it. Just the early puberty stuff alone is blowing her mind, after all. Add to that the further loss of control that she seems to be having, and you end up with a little girl who is frustrated and frightened, and who, when pressed for information on what she perceives, lacks the descriptive language to explain.

"My head feels weird."

"It's my little monster."

"My brain is mad at me."

Well, I don't know. Perhaps she does a fine job of explaining, in her own way.

In a few weeks, Schuyler will visit her neurologist, and hopefully she'll get another EEG, perhaps another extended weekend one where they glue a bunch of wires to her head and wait, like a hunter watching a trap from a blind. That's the best we can hope for, that something will happen during this tight window of opportunity. An author friend who has experience with absence seizures brilliantly described it as "like trying to take a polaroid of a ghost". That's perfect.

And it may all be nothing. It's feeling less and less like nothing, but then, watching for this particular phantom is making us twitchy and paranoid. We find ourselves falling into the oldest cliche, repeated endlessly by countless parents of broken children.

"We just want an answer, even if it's bad."

We said that before, when we had no idea of the severity of Schuyler's monster, and ultimately we didn't end up feeling quite that relieved once we got that answer. If this new monster introduces itself one day with a full blown grand mal seizure, I guarantee we won't be grateful to KNOW then, either. But the uncertainty wears you down. The watching, and the waiting.

Do you know what I miss? I miss being a funny writer. There was a time, long before all this, long before I discovered what I would be writing about and worrying about for the remainder of my life, when I just wrote funny stuff. Jesus Howard Christ, I miss those days.

Pretend and not pretend

2011-04-06T23:26:00.002-05:00

R & S
Originally uploaded by Citizen Rob

The past seven days have been... well, up and down.

Last week, the three of us flew to Nashville for the Second Augmentative and Alternative Communication (AAC) Workshop at the Kennedy Center at Vanderbilt University. Julie and I were fortunate enough to speak on a panel of some extraordinary parents, and once again the conference was transformative for us all. We left feeling enlightened, valued, and perhaps even daring to be hopeful.

The day after we returned, Schuyler had another accident at school. She had yet another one today.

"I felt weird," she told me today as I asked her about it.

"You felt weird?" I repeated back to her, which is how you communicate verbally with Schuyler.

"Yeah," she said. "I felt weird in my head." She paused for a moment, considering. Finally she said, "I think it was Polly. The little monster in my head."

I have no idea what's going on, or how much her issues are related to her polymicrogyria or absence seizures that may or may not be happening. Before the end of the month, she will have seen a doctor and a neurologist. Maybe we'll have some answers. Perhaps not. Probably we'll have different questions.

Schuyler admitted to me that she is a little scared by this. She said she was a little scared, but also that she is Drummer Girl, and Drummer Girl isn't afraid of anything, so I guess that's her new talisman. We drove around listening to loud drum music (mostly music from Bear McCreary's score to Battlestar Galactica, which contains some of the coolest and most fearless percussion music I've ever heard) and picked up Tron from the RedBox so Schuyler could watch the cool girl with her same haircut who kicks ass. We didn't talk about her accident or her fear any further. Because Drummer Girl isn't afraid of tiny monsters that make her wet her pants.

I find it interesting that she has latched on to this idea of Polly. Schuyler does pretty well with metaphors, maybe because so much of what she experiences in her world is hard to explain. It's a little less confusing when she can believe in the invisible and the imaginary, even though she will also tell you that fairies and monsters are pretend. ("Dinosaurs were real, but they are pretend now," she informed me the other day.) She is comforted by them even as she knows they aren't real. Schuyler doesn't need Jesus. She's got Tinkerbell, and King Kong, and she's got Polly, who is the enemy but also her constant companion.

While we were in Nashville, Schuyler asked Julie and I to draw monsters for us. Julie drew something like an octopus with a chicken beak and antennas that shoot lightning, while I opted for the old school grumpy sea monster. Schuyler liked them both and displayed them prominently in the hotel room the whole weekend.

She liked them for what they were, but of course, they weren't her monsters. Hers is invisible, pretend and yet not pretend, and ultimately unknowable. We know it by its footprints, by the chaos it leaves behind.

The Season for Overbelieving

2011-04-04T16:30:00.003-05:00

Travels with Jasper
Originally uploaded by Citizen Rob

Today, Schuyler began taking the TAKS test. (This is the Texas Assessment of Knowledge and Skills, our version of the No Child Left Behind nonsense.)

I've talked about this before.

If you want to know my feelings about kids with disabilities and standardized testing, follow that link and read what I wrote two years ago. I don't think my outlook has changed on this at all; indeed, they didn't change even after Schuyler passed part of the test.

It's a cliche, perhaps, but this week, I feel like my child is being left behind. At least she won't have a lot of homework. More time for self-esteem repair, I suppose. Since everyone involved in education is bitching about NCLB this time of year, I'll leave it at that.

I've sort of come to dread the spring as far as Schuyler's school experience is concerned. It's a one-two punch of TAKS testing (and all its accompanying anxiety) and the following meeting to discuss Schuyler's IEP for the following year. Last year, the school district's educational diagnostician asked for (and was denied) our permission to administer a new cognition measurement test (basically, an IQ test) to Schuyler. She even admitted, without hesitation, that she believed such a test would reveal Schuyler to fall within the range associated with mental retardation (or whatever she calls it now, post-Rosa's Law).

That wasn't a good IEP.

I wrote about this last year, in a post titled "Truth can be a monster, too", and looking back on it now, I think it was probably one of the more important things I've written publicly about Schuyler's academic situation. It certainly paints a more accurate picture than what I wrote in my book as I tried to look into her future.

At that time, I was talking about Schuyler being mainstreamed at an age-appropriate level and one day joining her typical classmates and graduating from high school with them. But all of that was a lie, albeit an unintentional one. Schuyler's inclusion was something of a Potemkin village, and we happily allowed ourselves to buy into the fiction for far too long. We believed what we wanted to believe, to our utter shame.

"Truth can be a monster, too" ended like this, with some of the hardest words I think I ever had to write, hardest of all because they might have been loaded with frustration and sadness, but they were fat with truth, too:

For all my fancy book events and all my inspirational speeches and all my "gee, what a dad!" accolades, in the end I might be just like any other parent of a disabled child who has convinced themselves that the future is going to be easier, not harder, than the past and the present. I've looked at families with kids who sit solidly within that MR diagnosis and I've counted myself fortunate that my daughter has future options unavailable to them, but that might not really be true after all. It's entirely possible that I've stupidly and arrogantly pitied my own people.

My love for Schuyler has made me a believer and an unwavering advocate, but it might also be making me into a fool. And that's hard to face.

So how do I feel? I'm tired. It's exhausting, trying to build a fantasy world in which you child's disability isn't going to hold her back forever. It's a full-time job, convincing myself that everything's going to work out somehow and that one day she'll tell people "Why, there was a time when my teachers thought I was retarded, and look at me now! My parents believed in me, and they were right. I'd like to dedicate this Pulitzer to them."

And it requires a constant, unblinking effort to convince myself of the very very pretty lie that my little girl is going to be okay.

A year later, I'm not sure how much has changed. I never made peace with the idea that Schuyler might be MR, and in fact I believe more than ever that she is not. Am I overbelieving in her, as I also expressed last spring? Perhaps, but I still think that as her father and one of her two chief advocates, overbelieving in Schuyler is exactly appropriate. Furthermore, and this is where there is perhaps the potential for disagreement amongst the members of the IEP team, I believe that overbelieving is right and appropriate for every single teacher and therapist who works with her. Every single one of them. Period.

I've already met with someone who will, I hope, be key to some success for Schuyler. A couple of weeks ago, I picked her up from school and took her to meet the band director at her new middle school, and after evaluating Schuyler's abilities on a few different possible choices, it was decided that percussion will be the best choice. Schuyler the drummer girl. Just imagine it.

I like this band director; I'm hopeful that she will operate in a spot somewhere between the two extremes of "I have contest coming up, I don't have time to coddle a special ed student" (there's some of that out there, I'm sorry to say) on one hand, and on the other, a brand of "inclusion" that involves parking the kid with the disability in the corner with a chair and a rubber triangle. I think this director is going to be demanding of Schuyler and is going to help her learn how to focus. I think she's going to give Schuyler a chance. She might even overbelieve just a little.

At this year's IEP, we'll be changing Schuyler's team dramatically. This will be her last IEP meeting at the school that has, for all our recent disagreement, taken better care of Schuyler than most broken children ever experience. But after last year's attempt to stamp Schuyler as MR by the diagnostician, with the tacit agreement of other members of the team, there has been a serious divergence between the school's philosophy for Schuyler and ours.

Will that continue with next year's team? Or can we assemble a team of overbelievers, a group that will be less interested in trying to determine what Schuyler is incapable of doing and instead try to determine what she already knows and how to build from there?

I live in hope. As Shakespeare says, all men, I hope, live so.

Have you ever seen Office Space?

2011-03-25T20:15:00.002-05:00

Here's an embarrassing but perhaps amusing story for you. (Before you ask, no, Schuyler was not home for this incident. It would not have happened if she had been.)

This afternoon, I lost my shit. Julie was on the phone trying to accomplish an important task with a customer service rep who seemed to be doing everything in her power to obstruct said task. She was in full-on "There's nothing I can do" mode, with that tone that suggests she wished our names were Mr. and Mrs. GoFuckYourself since that's clearly what she wanted to say. At the conclusion of the conversation, when the person had succeeded in making Julie actually cry, I needed to print something off, and at this tense, unhappy moment, our printer decided that it was no longer in the business of printing.

It was a very poorly timed print error.

So yeah, I lost it. I cursed at the printer, and I hit it. Okay, I may have hit it a couple of times, but when the flimsy shelf on which it sat suddenly gave way, that was it. Swearing dramatically and creatively, I proceeded to stomp on the printer, repeatedly, feeling it crunch beneath my feet, hearing it make a sound that, while not as satisfying as the sound of printing might have been a few moments before, was nevertheless a wonderful guilty pleasure. I lost my temper in the most ridiculous, over-the-top way, and that was that for the printer.

When I got my sudden flash of anger under control, I looked over at Julie sheepishly. "Want to join in?" I asked weakly. Without a word and with a stoic expression, she quietly stood and walked into the other room without answering.

I started to get up to follow her, to apologize for my shameful, destructive outburst, but before I could take more than a step or two, she returned from the bedroom.

With a softball bat. Which she put to astonishingly effective use.

Anyway, our printer most definitely doesn't work now. But I think we both feel much, much better.

The Dad Zone

2011-03-23T18:06:00.005-05:00

S
Originally uploaded by Citizen Rob

Well, here we are. This morning saw an event that has loomed in the future, not as a bad thing, but just a thing. Today, Schuyler reached an important milestone in every pre-teen girl's life. You know what I'm talking about. Her crazy ride into young womanhood has begun.

(Note: Before the Corps of Righteous Indignation fires up the eFinger of Scoldage, yes, I did ask Schuyler if I could talk about this.)

When I mentioned this on Facebook, I got some interesting reactions. One was that they couldn't believe I was talking about it on Facebook, even after I pointed out that Schuyler knew I was doing so.

You can disagree with my choice to write in such detail about Schuyler's life; that's a valid discussion, and one that I've had from time to time.

But if I am going to write about the milestones in her life, why wouldn't I include the positive, non-disability ones as well? It's personal, to be sure, but I'm not sure it's more personal than the things that she has no choice but to expose every day, just by virtue of the fact that she attends a special education class and talks with an electronic device and a robot voice. And really, I think the reason she didn't mind was simply that from the moment we figured out what was going on, we presented it to her as something positive, something cool, to be celebrated. She told us that she was scared, but also that she was excited.

Schuyler is always very concerned about being taken seriously as a Big Girl, and once we explained what this meant, she stood a little taller and embraced the positives of the moment. I realize that will probably fade in a hurry, especially as the reality of the experience sinks in, but she's starting off from a place of celebration, not shame, and while I admit that we've gotten some things wrong in the past, I think we got this moment right. High fives, Team RumHud.

The other reaction I got, one that I suppose I should have seen coming, could be expressed along the lines of "Ooo, do you think you'll be able to handle this, Dad? Just wait until you have to deal with feminine hygiene products!" (Cue sinister music.)

Sigh.

So let me make this clear. No, I don't love the fact that Schuyler's entering this phase of her life, not least of all because for her, the hormonal changes that bring her first period may also be causing seizures or otherwise stirring her neurological processes in a way that no one can predict or prevent. Puberty's a lot less amusing when it bares a monster's tooth and claw.

But for me, the anxiety I felt this morning mostly grew out of the unavoidable reality that Schuyler is growing up, quickly and wildly, and the days when her otherworldliness is cute are rapidly running out. And more narcissistically, it makes me feel old. REALLY old. That's a universal Dad experience, I guess, with or without a disability. My little girl isn't going to be a little girl much longer. Perhaps she already isn't, and hasn't been for a while.

So yeah, this makes me twitch a little. Maybe more than a little. But it's not because I have some inexplicable fear of icky girl stuff. Is that really supposed to be my reaction? "Ew ew ew, stop talkin' about it and turn on the ball game already! Jesus Christ, woman..." Someone asked if I would be capable of going to the store and buying "supplies" if Julie couldn't. Really? Why wouldn't I? Someone else pointed out that as a man, I wouldn't necessarily know what to get. Which is very true. Which is why I would ask. I don't drink coffee, either, but I still buy it for Julie when I go to the store. I can read a shopping list. I can absorb information when presented to me. Honestly, I'm baffled that this would even come up, and yet part of me understands perfectly. But it's still bullshit.

So let me ask you, Society. Do you want fathers to be involved in the lives of their daughters? Then you have to let go of the Big Dumb American Dad narrative. You have to forget about Fred Flintstone, Homer Simpson, and the cast of every stupid "Tyler Perry Presents..." show on TBS. Because I do whatever Schuyler needs me to do, and in the past that has included taking her to buy new bras. Yes, I realize that everyone's comfort level will obviously be higher when Julie takes the lead on this particular issue (there's progressive, and then there's pragmatic), but this isn't something that's permanently outside The Dad Zone. It's ALL in The Dad Zone. When Schuyler needs help with this, if I'm the one here, then I'll be the one to help her.

And here's the thing. That's true of every other father I know. The only fathers I know of whom this might not be true are a generation apart, maybe two generations, and honestly, I suspect most of them would step up when the situation called for it, too. I'll make a big, overly generalized statement here, while I'm at it. If you're a father here in the year 2011 and you're NOT comfortable helping your daughter with "girl stuff"? You need to GET comfortable with it. It's your goddamn job. You're not being cute if you run away from it. You're being a shitty dad. And you're kind of a shitty mom if you let him get away with that.

Sorry, but that's my snotty opinion. You know where to send the hate mail.

Enough

2011-03-20T23:45:00.004-05:00

Baby Schuyler
Originally uploaded by Citizen Rob

I had a memory pop into my head tonight, kind of out of nowhere. It was the fall of 1999, late fall, almost winter. It was night time, probably almost midnight. Julie and I lay in the dark of our shabby but not too shabby apartment, in a shady but not too shady suburb of Detroit, and we were discussing the future. Specifically, we were talking about the future of our soon-to-be-born child, the one we called the Grub and whom I knew (but Julie did not) would be our daughter.

That night, we quietly talked about how we wanted to raise our kid, a child who was both completely theoretical in our minds and yet sitting right there in the room with us, floating serenely a world away and at the same time no distance from us at all, just Not-Yet-Schuyler and the little secret monster inside her tiny, forming head.

We talked about conversations we would have with our child one day, decisions we'd make with that kid, the things we thought she would do, the rules on which we would stand firm and the rules we'd never even lay down in the first place. We wondered what our kid would call us (Mom? Dad? Mommy? Rob and Julie? Did we care?), what kind of half-Midwestern, half-Texas accent she might develop. We talked about our ridiculous ideas for what would make a kid succeed. I was steadfast that ours would be a Disney-free home (ha); Julie declared that she would only give Schuyler hand-crafted toys. (She actually tried this, but Schuyler hated them. To this day, there are few toys that excite Schuyler as much as a crappy piece of My Little Pony plastic from a Happy Meal.)

That night, in the dark, we tried to push back some of the uncertainty of what lay ahead of us by constructing a little pretend future. It didn't matter if things turned out the way we imagined. We didn't know if things were going to be okay, although we had no reason to think they wouldn't. We simply had to believe they might, and that was enough.

-----

Tonight we step into Schuyler's room to turn off the tiny pink lights that we hung in her room at Christmas, the lights that she asks us to leave on every night when she goes to bed. I can't imagine she wants them on because she's scared. She wants them on, I think, because they give her the light she requires as she has her quiet conversations with her dolls and her animals and her monsters and dinosaurs before she goes to sleep. She wants them on because they are pink, and pink is still cool, the coolest thing there is.

We turn off the lights, and Julie says, "She's sleeping with her witch." Sure enough, Schuyler has dug out her little Groovy Girl witch and is holding it close to her chest. Julie leaves the room, but I stay for a while. I lay down beside Schuyler and we sit in the dark together. She wakes just enough to talk with me, about her witch and Supermoon and what she's going to dream about. She curls up beside me and goes to sleep again, her witch still clutched tight, and doesn't wake when I leave.

And it strikes me tonight, as it does on many nights, on most nights, even, that more than ever, I still don't know if things are going to be okay. Unlike that night almost twelve years ago, I have reasons to believe they won't be.

And like way back then, I just have to believe, with a little more desperation and a lot fewer threads to grasp than before, that things just might be okay. And like that long ago night, it might just be enough.

The Ifs and the I Don't Knows

2011-03-15T17:36:00.010-05:00

Us
Originally uploaded by Citizen Rob

Waiting two months to see a neurologist sounds like a long time, even though I'm told that it's really not. Well, it is a long time, but I guess I should say that it's not an unusual wait; it's actually pretty good compared to the wait that many parents and patients endure. Most people end up waiting months, and that's right here in America. I can't tell you how many times I've read conservatives disparaging the Canadian health care system's long waits when they are listing the failures of socialized medicine. As far as I can tell, the big difference between that system and the one we have here in God's Perfect Perfect Country is the fact that we'll get a gigantic bill for our trouble. Well, what are you going to do?

It's frustrating, in part because we're trying to catch a very elusive monster. Schuyler hasn't had consistent issues with this, after all. She had a few "incidents" back in January, and then again two weeks ago (and twice last week since I last wrote about this). This week? Nothing so far. What we'll be hoping for is IF she's having seizures, and we don't know that she is, she'll just happen to have one of them while she has wires connected to her head in about six weeks. If we could have gone to the neurologist's office when she was having these incidents, then we would have a better shot at catching one as it happens. Doing it this way is like finding evidence of some animal in the forest and then returning with a gun two months later, hoping it might come back. And not knowing if it's a rabbit or a bear. Or a Tyrannosaur.

Identifying absence seizures is hard because they are so hard to recognize, and in Schuyler's case, the evidence that she might have had one follows the actual seizure itself, IF she's having them. If if if if if if if. Fucking ifs rule our lives now.

I don't know if she's having seizures. We continue to rule out the other possibilities, such as UTIs and blood sugar issues, but that process of elimination isn't much help. From what I've read, it's not unusual for absence seizures to go unrecognized or unobserved for years. Do you know when some kids discover they're having them? When they start driving. Think about that. Spacing out for a few seconds in class or at home goes unnoticed for years, easily, but imagine your child having one at 70 mph on the freeway. Assuming your kid survives, congratulations! Now you know they're having seizures.

Well, Schuyler's eleven, and she still doesn't ride a bicycle, so that's a fun fear that I can put off for a while. It's good to pace yourself, after all.

When we learned of Schuyler's polymicrogyria almost eight years ago (God, I can't believe it's been that long), this wasn't what we expected. I suspect that's true for a lot of parents. You imagine the Big Event, you imagine that first seizure arriving like a hurricane or an earthquake. You don't think about the possibility that you just might not know, it might take years to discover the truth.

There's a lot I don't know. I don't know if Schuyler is having seizures. I don't know if she's significantly (and permanently) impaired intellectually. Will she ever catch up to her classmates? Will she graduate from high school one day? Will she drive a car and live in an apartment and have a job? Will she date boys and get married? Will she date girls and scandalize her grandparents? When I die, will she cry her tears and then move on with her independent life? Will the monster that holds her back now begin to gently release its grip on her as she gets older, or will it one day crush her in its hands? I don't know. I can't know.

Other parents worry about their neurotypical or otherwise unafflicted children's futures, I get that. But not like this. I wish I knew how to explain to those parents, the ones who try to cheer us up by telling us how they worry about their kids, too, just like us, that no, they don't. I wish I could make them see that the things that worry them, things like good grades or their daughters' first periods or their kids' lives after high school, these things terrify us. Even the usual stuff is hard, the stuff we can see coming. The thing you learn with a kid like Schuyler is that even the boring stuff goes down differently with her. You think you know how it'll play out, but you don't.

Sometimes I feel like the worst thing that happened to Schuyler was simply that she was our first born. After Schuyler, we made the decision not to risk more children, and while that has been a source of some sadness over the years, it was nevertheless exactly the correct choice to make. But if we'd had another child before Schuyler, if she had an older, neurotypical sibling, then at least she wouldn't be as alone as she is. I don't know, though. Maybe it wouldn't be any better. Schuyler is loved by a great many people, including members of her family, but the harsh truth is that the reality of her situation is understood by very very few. Our friends, our co-workers, and both our families want to get it, to get her, but they don't. And really, I don't know that they can.

Because honestly, I don't know that Julie or I do, either, although I know we get closer than anyone else. Some of her teachers have probably gotten close from time to time, too. The hope and the enthusiasm we all felt when we first moved to Plano has been replaced by some grey truths. Schuyler can be difficult to teach. Schuyler can be age-appropriate in some ways and astonishingly delayed in others. A world in which she can attend mainstream classrooms and learn alongside her neurotypical classmates seems more out of reach now than ever before. And she might be having seizures.

Sometimes when I write about Schuyler, I have a point that I'm trying to make. I take my topic and I use my skills as a writer to present it, sculpted and shaped into something that works as an essay, something that might have meaning and value to others. But every now and then, when I feel overwhelmed both by the way things are and the unknown and the unknowable, I just start writing, just let my anxieties flow out without shape or craft. No art, just "fuck".

Sorry, but yeah. Fuck.

Polly

2011-03-04T00:29:00.002-06:00

Flygirl
Originally uploaded by Citizen Rob

You watch for the big monsters. You brace for them, wait for them to come so you can wrestle with them, your feet firmly in place, set for the match. But the thing is, when they arrive, they never feel like big monsters. They don't even reveal themselves all at once. They quietly walk into the room, never in the light but rather in the shadows at the edges. It can take a long time to notice that they're even there, and to identify what they are.

Two years ago, we faced the possibility that Schuyler was beginning to have absence seizures. This was tough, but not unexpected; the majority of kids with polymicrogyria, as many as 85-90% of them, develop seizures. Over the next couple of months, we went trough the whole process of EEG evaluation, including a fun test where Schuyler had wires glued to her head for a whole weekend. That test was ultimately inconclusive. It didn't record any outright seizures, but it did show a "significant neurological event" occurring periodically on the left side of her brain while she slept. Her neurologist had no idea what it was, only what it wasn't. No seizures, not yet, but maybe... something.

I hate writing about something that might embarrass Schuyler one day, but it's kind of hard to avoid at this point, so I apologize in advance. A few weeks ago, out of the blue, Schuyler had an accident. She peed her pants. A few days later, it happened again. Both times she said she tried to get to the bathroom in time, but didn't make it. She explained, as best as she could, that it just happened. One minute she didn't have to go, and the next, it was too late.

Last night, at the house of a friend, it happened again, catching her completely by surprise. And then tonight, after we got home from school, one minute she was sitting down with her Happy Meal, and the next, she was running to the bathroom, in vain. Another accident.

On none of these occasions was anyone actively observing her in the exact moment. But we know the warning signs; we've known them for years, always kept them in the back of our minds.

Typical absence seizures are primary generalized seizures characterized by brief staring episodes, lasting two to 15 seconds (generally less than 10 seconds), with impaired consciousness and responsiveness. They begin without warning (no aura) and end suddenly, leaving the person alert and without postictal confusion. Often, the person will resume preattack activities, as if nothing had happened. Simple absence seizures are characterized by staring spells alone. In complex absence seizures, which are more common, staring is accompanied by automatisms, such as eye blinks or lip smacking; they may include mild clonic, atonic, or autonomic components involving the facial muscles. There may also be a slight nod of the head or semi-purposeful movements of the mouth or hands. The automatisms tend to be stereotyped, with the same behaviors occurring during each seizure. Penry et al observed automatisms in 63% of all absence seizures. However, the automatisms are less elaborate than those observed with complex partial seizures. There may also be autonomic manifestations, such as pupil dilation, flushing, tachycardia, piloerection, salivation, or urinary incontinence.

"Absence Seizures and Syndromes: An Overview", from Perspectives in Pediatric Neurology

So again we brace ourselves, not for that often-imagined moment when Schuyler falls to the floor in a grand mal seizure and suddenly It Has Come, but rather for the suspicion, the realization that something may already be happening, that the odds may have caught up with her at last. Last time, we wondered because Schuyler had been spacing out from time to time. This time, the signs are even more compelling. And again, we'll put Schuyler in the hands and the sensors of a neurology team in the hopes that they may have their crown of wires attached to her at an opportune moment so that we can finally know if this is beginning in earnest.

Schuyler is eleven now, and we believe that she's old enough for a little more adult conversation about this. She's known about her condition for a while. A number of people have written to me over the years, afraid that words like "broken" and "monster" were going to scar her somehow, but the fact is that we've had some version of this conversation going with her all along. People afraid of how Schuyler might feel if she read my words one day are missing the point. She's been hearing the words, she's been soaking up the concept. Hiding her reality from her would be wrong, and it would be pointless. She faces the big truths in her own way; she processes them in her own time.

She was feeling humiliated by her accident tonight, as she had the night before, so I sat down with her and explained that these accidents might not be her fault. I told her that the same thing in her brain that makes it hard for her to speak clearly, the thing that causes her to drool sometimes and keeps her from eating some foods, that thing might also be causing her to pee her pants every now and then. I explained how our brains run on electricity (which she thought was pretty cool), and that some brains use too much electricity sometimes, which causes them to overload. Those overloads are called seizures, I told her. Some of them are brief and small, so small that the person doesn't know that they had them, while others are bigger.

I told her that we will have to see a doctor again to be sure, but that she might be having those little seizures, and if she is, that might be causing her to pee her pants. I told her that these seizures were cause by the thing in her brain that made her different.

"What's it called?" she asked.

"What's what called?"

She pointed to her head. "The little monster in my brain."

It occurred to me that I might not have ever actually told her this part. "It's got a long name, it's called polymicrogyria."

She thought about that for a moment, and then laughed. "That's a funny name," she said.

"Do you want to call it something else?" I asked.

"What's it called?" she asked.

"Polymicrogyria."

She laughed. "I know, I know!" (She says "I know, I know!" a lot when she gets excited.) "It's Polly the Monster!"

I see a monster that may finally be giving my little girl seizures, might be delivering on the ugly promise we'd been made when Schuyler was diagnosed almost eight years ago, and I feel my heart drop again.

Schuyler sees that monster, and she nicknames it Polly.

As we drove to pick up Julie at work, Schuyler sat quietly in the passenger seat, processing. Finally she turned to me.

"Daddy? I don't want a little monster in my brain."

She said it seriously but not somberly, sad but not crushed. I told her that I didn't want her to have it, either, but there was nothing we could do but make the very best of it, the same as we always had.

She shrugged a little and said, "I know."

Later, she asked Julie if she was sad. She said it with concern for her mother, but I didn't get the sense that she was terribly sad herself. I mean, she wasn't thrilled by this new situation, but she was processing it already, moving faster than we were, perhaps sensing that some very hard stuff may be waiting in the near future but already impatient with the sad.

"I know." She knows.