Just a word: Tracy Morgan Edition

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?

A story of distraction

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.

Just a word.

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.

Waiting for Polly

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.

Have you ever seen Office Space?

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 Ifs and the I Don't Knows

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.

"Beneath those stars is a universe of gliding monsters."

Pondering monsters
Originally uploaded by Citizen Rob

"...Heaven have mercy on us all - Presbyterians and Pagans alike - for we are all somehow dreadfully cracked about the head, and sadly need mending." -- Melville (Moby-Dick)

-----

(Note to parents of kids with polymicrogyria: While I'm not normally one who worries a great deal about so-called "triggers", and while I'm writing this in large part on your behalf, I nevertheless feel like I should give you a heads up that I'm going to be talking about stuff that you are all-too-aware of but might not particularly enjoy reading about.)

I know I recently pledged to focus on the positive, and this post might not seem to honor that. But I actually think it does, because I believe clarity and respect are positive attributes, and I need to speak about those topics today.

I received a comment on this blog recently, from someone who has left critical comments before, and that's fine. I've posted them in the past because I really don't believe that it serves anyone, least of all me, to sanitize the comments left here. I've mentioned before that I will reject a comment if it is threatening or disparages anyone besides myself, or if it is clearly part of a coordinated campaign to dump on me for whatever reason. I think my comments become boring if they're all "go Rob" or "me too". But this comment I ultimately decided not to publish, because I felt like it could be offensive or hurtful to other family members of persons suffering from polymicrogyria, aka "Schuyler's monster".

But the remark stayed with me, if only because it's not even remotely the first time I've been confronted by the idea it contained. If I thought it represented one crank's opinion, then I would let it go. But the fact is, it doesn't, not by a long shot. So I guess I've changed my mind about posting it.

"What will become of your life when Schuyler's monster becomes her identity? Maybe she will grow to resent that you call what makes her a unique individual a 'monster' as if were a bad thing."

Like I said, the idea of Schuyler's polymicrogyria as a kind of unique personality trait rather than a serious and potentially dangerous affliction is hardly a new one. And I'm sure that I've made it even easier to make that claim. I recently said the following, after all:

Schuyler's polymicrogyria isn't her greatest challenge, not any more. Her life doesn't seem to be in any real danger, with no apparent seizures yet, and her monster doesn't impede her everyday life with the ferocity that it does for so many other PMG kids. For that, I am grateful.

I further explained that Schuyler's difference, her uniqueness, is something that I'm still thrilled by, and I consider it my distinct honor to be the person who gets to help lead her through a world that might not understand her difference, but which is nevertheless a much better, more vibrant place because of it.

So let me make this as clear as I can. I love Schuyler wildly, and I find her to be fascinating. I think she is by far the most interesting person I've ever known, and she's only eleven. And while I acknowledge that a huge part of that comes from the fact that I am her father, I am also aware that my fascination with the strange and wonderful person she is stems in no small part to the fact that I get to see into her unique world more than most people, more than anyone with the exception of Julie.

I think I've made that pretty clear in the past, in what, like 90% of what I write?

Here's the other thing, however. If I could have a chance to experience life with a Schuyler who was born free of her polymicrogyria, if I could go back in time and spend the past eleven years with a neurotypical version of Schuyler, I would do it in a heartbeat.

Because here's the thing that a statement like "you call what makes her a unique individual a 'monster' as if were a bad thing" is sugarcoating:

Polymicrogyria is a bad thing.

Polymicrogyria, in its many forms, affects the lives of its victims in various ways, and all of them are bad things. The difficulties with swallowing that consign some PMG kids to a lifetime of liquified foods and bouts with choking and life-threatening pneumonia are bad things. The lack of speech that robs PMG patients of significant early communication and stunts their development both intellectually and socially for the rest of their lives, that is a bad thing. The accompanying cerebral palsy that many patients experience, the difficulty in walking, that is a bad thing. The cognitive issues that can range from a developmental delay to severe intellectual disability, those issues are very bad things indeed, no matter how you spin them.

And the seizures, the ones that Schuyler is still in danger of developing, those terrifying episodes that strike some PMG patients at birth, those powerful electrical hurricanes swirling in those young, innocent brains that rob many very young polymicrogyria patients of their very lives before they reach their first birthdays, those are very very bad things. I follow polymicrogyria discussion boards, I see the notices that some young person has been killed by that thing that makes these kids such "unique individuals". I haven't experienced the pain that so many polymicrogyria families and those who battle other similar disorders like microcephaly and Angelman Syndrome have gone through, but I've witnessed the devastation that many of them endure.

And I never let myself forget, because it would be a crime of hubris to do so, that at any time, especially now as Schuyler's body and brain begin to undergo a whole new world of changes, our own world could be rocked, and that Schuyler's monster could grow some very big teeth.

So yeah. I feel comfortable calling it a monster, and while I celebrate Schuyler's individuality and always will, I also recognize that it has come with a price, one that she pays and will continue to pay all by herself. And I call it unfair, because it IS unfair, that she will not have the opportunity to choose her own individuality, her own path, without the unfeeling hand of that monster writing much of her narrative for her.

I understand how many people in the disability community choose to embrace disability rather than fight it. I get the Holland poem, and I understand that it means a lot to many people, even if I reject it. But I do reject it, as I reject the embrace of disability as just another thing that makes our kids and our loved ones who they are. It feels wrong to me, almost like a kind of fetishization of disease or disability.

I am not moved either way if you feel that way about your own afflicted family or your own disability. Everyone makes their own way as best as they can, and I respect that. But I find it offensive if you suggest that I should do the same, and that I should embrace the thing that, yes, breaks my child and which torments so many of her neuro-atypical brothers and sisters with such ferocity. It is a bad thing, as far as I am concerned, and I will call it a monster.

I started using the monster metaphor (stolen from Schuyler, if I'm being honest) long before I wrote a memoir, but it wasn't until an interviewer asked me about it during the press attention that the book generated after its release that I gave it much thought. I realized that it was a metaphor that I embraced, not for literary purposes but for personal ones. Like Schuyler, I needed to imagine polymicrogyria as a monster, because I can't fight a little girl's broken brain. But I can fight a monster. I can imagine myself going into battle against one of those.

And I don't even envision that fight as something heroic, either. Maybe I did, in the beginning, but not now. I'm not Perseus, heroically outsmarting and killing archaic beasts. I'm not St. George slaying the dragon.

If anything, I am more like Captain Ahab, fighting obsessively against a monster that I can never defeat. Like Ahab, I am aware of the futility, but I am also unable to turn away.

Schuyler's affliction, the one that hurts and kills other children, the one that touches her more gently than some but still colors her life so completely, it is a monster. If someone comes here to try to make a case that it's not, and that it is simply one of the innocent, beautiful little parts of her personality that make her the purple snowflake that she is, they should do so knowing that I will disagree, and I will find their disrespect for this bad thing to be offensive.

Melville's description of the sea ("...this velvet paw but conceals a remorseless fang") works pretty well for Schuyler's manifestation of polymicrogyria. It's not cute. It makes Schuyler's life hard, and moreover it devastates and even takes away the lives of others. I'm with Ahab on this one. I'll never quit.

Thus, I give up the spear.

A conversation I'm not sure I know how to have

R & S
Originally uploaded by Citizen Rob

Conversation in the car, earlier tonight.

Me: Are you okay?

Schuyler: Yeah.

Me: You seem like you're sad.

Schuyler, shrugging: A little.

Me: Why are you a little sad?

Schuyler: Two mean girls at school.

Me: What did they do?

Schuyler: They made fun of me. "You're stupid. We're not friends at all!"

Me: Oh no! Why did they say that?

Schuyler: They don't like me because I can't talk. I'm different.

Me: You are different, but that's not a bad thing, you know.

Schuyler: I don't want to be different anymore.

And there's a whole conversation to be had after that, the one about how being different is hard, but it's also the thing that makes you special, etc., the whole "purple snowflake" thing.

But Schuyler doesn't always buy it, not entirely, and while she was able to put it behind her by the time she went to bed, I know that it sticks with her now, in ways it didn't before. And all the pep talks and all the Sesame Street sentiments in the world don't change the fact that for a little girl like Schuyler, self-aware and a week away from her eleventh birthday, being different just sucks.

I can (and did) tell her that everyone is different in their own way and that's okay, but she knows that she is very different indeed. And sometimes it is very much not okay.

Mea culpa

Fighting the battles for a special needs child changes a person. I suspect every parent of a kid with a disability will tell you the same thing, how the people they've become are so far from where they began. And while it's fashionable and swell to talk about the positive changes and the ways we grow as people, the reality is that we also change for the worse. We harden to the world sometimes. From our positions of desperation and occasional lack of empowerment, we become cynical or jaded. Or even paranoid.

At the very least, we can become overly sensitive.

I can make all the excuses I want about why we reacted the way we did to our first meeting with Schuyler's new mainstream teacher. I can talk about red flagging, which is a very real phenomenon. I can talk about how we truly felt, in that moment, that we were being snubbed. I don't wish to minimize how that can feel, and how very often that is the case with parents of kids like ours.

But the thing I need to do now, most of all, is to apologize to Schuyler's new teacher. I received an email, never mind from whom, that shed a lot of light on the situation, and made me realize that yes, we almost certainly misread the situation. And because I am who I am, I took that misunderstanding and put a microphone in front of it. For that, and for hurting the feelings of a good public servant, I am truly sorry. I look forward to the opportunity to make that apology face to face.

Here's the other thing I need to say. As humbling and even mortifying as it is to come before you and make this apology, I'm still happy to do so. More than happy, I'm relieved and cautiously optimistic. This teacher apparently loves Schuyler, and while I can't imagine she'll ever grow very fond of Schuyler's jackass father, I nevertheless believe that she WILL be open to trying to help us reach our daughter. The fact that my take on the situation was so completely wrong could mean that a different, better experience might just be possible. It's worth a try.

Am I an asshole? I think probably yes. But my daughter isn't (well, not most of the time), and I'm hopeful, even in my contrition, that things might just work out for her.

Red Flag

Schuyler begins the fifth grade tomorrow.

So it begins.

I've written at length about the anxiety we experienced last spring in Schuyler's most recent IEP meeting (here and here and here), so you can imagine there's a certain amount of trepidation around here as we start back up. Nothing has really changed over the summer, except perhaps that everyone has had time to either think about what's best for Schuyler or entrench themselves more deeply in their positions.

Well, perhaps some of us have been doing both. I'll own up to that.

A few days ago, Schuyler's school held its annual "Meet the Teacher" hour. It's not a big deal, just a chance to see the classroom and meet with the new teacher and dump off the required metric ton of school supplies. But for us, this first meeting with Schuyler's mainstream teacher has always presented an opportunity to try to measure one thing in particular.

Is this teacher going to understand? Is this teacher going to get Schuyler?

This year, we had an additional concern. At last spring's IEP meeting, we were informed that the school's diagnostician wanted to do an evaluation of Schuyler that she anticipated would result in my daughter being identified as mentally retarded. Furthermore, she expressed the opinion that it was extremely unlikely that Schuyler would ever be fully mainstreamed. This evaluation met with the tacit agreement of the rest of her team. (It's probably worth going back and reading what I wrote at the time, "Truth can be a monster, too".) This year, we're operating under this new reality, or rather this new reality as defined (and data-supported, by golly) by the school.

Schuyler's special education team remains the same this year, as it has pretty consistently for a while. The "Meet the Teacher" hour has always been an important one for us, in that it has given us our first glimpse of how Schuyler's mainstream teacher might approach her. We've had positive meetings in the past, such as last year when her new teacher admitted that she was reading my book in order to try to have a better understanding of how Schuyler works, or the meeting with her second grade teacher, the one who eventually started studying up on brain disorders like Schuyler's and who expressed her desire to continue towards special education certification even after Schuyler had moved on. We've also had bad vibes at these meetings, when we met teachers who seemed friendly enough but who seemed to put up the wall, the one that suggests "You are parents and I am a teacher, and while I don't know for a fact that you are morons, let's just start there anyway." And our impressions turned out to be sadly prescient.

This year, however, we wanted to impress upon the new mainstream teacher that our own personal expectations were going to be much higher than what her IEP indicated. We wanted the new teacher to know that what we wanted, what we expected, was for her to be an overbeliever in Schuyler.

Well, we didn't get the opportunity. To put it bluntly, we were completely and, we believe, deliberately blown off.

When we came to the classroom, the new teacher was greeting and talking to other parents, but from the moment she saw us, she could barely give us the time of day. She was short with Julie for having some trouble with Schuyler's desk, and was unfazed when the problem turned out to be that the desk had been placed backwards. She wouldn't make eye contact with either of us and placed herself on the opposite side of the room from wherever we stood. When I finally walked up to her and began asking questions of her, she answered ONE of them, then turned and actually initiated a conversation with another parent.

It was rude, but more than that, it felt deliberate. She actually refused to talk to me about my daughter. I wondered if I was just being overly sensitive until Julie said, "Wow, I don't think I've ever seen anyone be that rude to you, ever."

I don't know anything about this teacher, other than the fact that she did work with Schuyler a little in a supervisory capacity last year in the after school program. She may feel like she knows all she needs to about Schuyler, and therefore our input isn't necessary. God knows I've met plenty of teachers who wear a very thinly veiled contempt for the parents of their students, and I understand that they've probably got perfectly understandable reasons for feeling that way.

But when I mentioned this on Facebook, one person suggested another possibility. "It sounds like you are what is known as a 'red-flag parent' - you actually want them to do their job, follow the law and listen to you and your concerns," she said. "They don't like that, because it costs them time, effort and money."

That seems a bit extreme, but I don't know. That may very well be the case. And if it is, then fine. I can't believe at this stage that anyone at Schuyler's school would ever think we might respond well to a "shut up and go away" vibe, but sure. We can start this year off like this. We don't have to have the conversation about our expectations for Schuyler's future during the "Meet the Teacher" hour.

We will certainly be having it, though. Sooner rather than later.

When I wrote Schuyler's Monster, I gave the book an ending that felt positive, but not for narrative reasons so much as because that's how our situation felt at the time. Her new school, our new community, all of it felt positive, like we'd begun a new chapter in Schuyler's life. But the reality is that even in a good school, the people who teach a child can lose their way. Even in a home where both parents advocate hard for their kid, they can miss the keys that open the right doors. There aren't any tidy endings or rousing victories. Only the ongoing work, the struggle to get it right, and by doing so, to give her a chance in this rough world.

I know that Schuyler's school district is one of the best in the state, and maybe in the country. And I certainly understand that by now, the teachers who work with Schuyler, including her new mainstream teacher, feel like they know how best to teach her, since they know her and have been working with her for a few years now. But the fact remains that according to their own evaluations and their own observations, the way things have been done haven't been working. With all due respect to the skills and the hard work that have been brought to bear on Schuyler's education so far, I think it's clear that being an "expert" in Schuyler hasn't been enough, either from them or from us. Something has to change, and some kind of new approach is necessary.

And if we have to be red flag parents to make it happen, then we're okay with that. We've done it before.

Alamo

It has been noted that my last two entries ("Truth can be a monster, too" and "A question of faith") are almost completely contradictory. They are. They are also both entirely accurate representations of my emotional state at the present time.

Funny how that works, the whole "people are complicated" thing.

The truth is that yeah, this is hard. And while I won't attempt to speak for Julie here, I personally feel like we're all failing Schuyler right now. Everyone who is supposed to be helping her is falling short. By issuing and endorsing this report and suggesting in the meeting that full integration for Schuyler is a very unlikely scenario, I feel like Schuyler's team at school is letting her down. I think I've made that clear.

But more importantly, in not understanding until this meeting exactly how much of a Potemkin village her mainstreaming experience has become and how far behind she has been allowed to fall, I have failed Schuyler. And not just a little, either, but in huge, glaring, unforgivable ways. I was supposed to know better, I was supposed to be watching for this, and I was supposed to be reaching her. I didn't.

And yet I still believe in her, even though I understand that perhaps I am setting myself, and probably her, up for sadness and disappointment. I'm still not accepting a future for her where she's unable to catch up to her classmates, even though I will love her with the same burning intensity and the same sense of pride if she doesn't. I might be wrong to fight like this, but she's so smart and so inquisitive and so insanely positive about the future that I'd feel like a completely different kind of failure if I suddenly started preaching acceptance and welcoming everyone to Holland.

On a good day, I vow to fight and say that her team is wrong about her. On a bad day, I understand that they're probably not wrong. And then I vow to fight anyway.

If you'd like to know how I feel right now, remember the Alamo, so to speak. Even if you're not a Texan, you probably know at least the bare essentials of the story of the Alamo. And so you understand that when the defenders of the Alamo entered the fort as the Mexican army arrived in San Antonio de Béxar, they weren't thinking "Oh crap, we're going to die in here, and the best we can hope for is to have a bunch of middle schools named after us all one day." They believed that help was coming, that all they had to do was hold on until the rest of the Texian army arrived.

But it is a point of pride here in the Republic that after the siege began and word came from outside that no reinforcements were coming, most of the soldiers stayed to fight, knowing that defeat was all but certain.

I feel a little like I'm standing in my own little fort, reading a report that says our reinforcements aren't coming. And I know I'm going to stay and fight, to the last bullet. But yeah, I now understand how this probably ends.

Like I said, that represents a not-so-good day.

A question of faith

So yeah, it's been a rough week.

We've been trying to find the lesson from Schuyler's IEP meeting and everything we learned, but it's complicated. The comments on my last post have been varied and helpful, everything from personal experiences of parents to those of persons with disabilities, from advice on navigating the public school system to suggestions of home schooling, and from attempts to explain what the school team may have been thinking and trying to make sense of that to the succinct poetry of "fuck those guys right in the eye".

It's complicated because this isn't like what we faced from Schuyler's previous school in the Austin area. That school, in Manor, was small and rural and unprepared for a student like Schuyler. The fact that they refused to face the fact that they were unprepared made the problem unfixable, but they started off in a very poor position to help her. (I am all too aware of how many families are in similar but inescapable situations.)

But we now find ourselves in perhaps the best public school system in the state of Texas, and certainly one of the most esteemed special education programs. When Plano's educational diagnostician comes to us with a report and an opinion about exactly what Schuyler CAN'T do, she's got the data to back it up. These aren't yokels. These are some very smart, very experienced people who see Schuyler's limitations, and the projections they are making for her aren't pulled out of a hat.

They're smart. Well, the specialists at the Yale Child Study Center were pretty sharp, too. Being smart doesn't mean being right, and for me, being dumb and desperate doesn't mean that I am necessarily overestimating my daughter's capabilities.

Still, for us to read this 19-page report and then look into the eyes of everyone in that room, none of whom indicated any disagreement with the diagnostician's prognostication, and say "This isn't an accurate picture", we need to try to understand how that can happen, and I have to convince myself that I'm not engaged in a fool's errand.

Schuyler's history provides part of the answer, I believe. Schuyler has shown everyone that predictions concerning her possibilities are a sucker bet. She's defied the predictions of smart people before. Perhaps that makes for a swell Hallmark card or an inspirational "Hang in there!" kitty cat poster, but it's due to more than her big heart or plucky spirit or guiding angels or whatever you choose to believe in.

Schuyler's unpredictability and her ability to surprise comes from that broken but amazing brain of hers. It is her monster's greatest and most enduring mystery.

According to the brain scan performed when she was three, anywhere from sixty to seventy-five percent of Schuyler's brain is profoundly affected and deformed by her polymicrogyria. That's a lot. And yet, what a doctor would expect to result in a severely impaired, totally non-ambulatory child has instead produced a vibrant, active little girl whose physical impairments are limited to clumsy hands, minor swallowing issues and some weak facial muscles. It's apparently tricky, trying to come to some agreement as to how cognitively impaired she is, but her intellectual progress has been steady and is showing no signs of flattening out.

Her brain is doing something extraordinary. It's not healing, but it's rewiring, it's improvising, and it's doing so in a way that no one on this planet can explain. Neurologists are fascinated by this kind of brain activity, but they're not surprised. It happens all the time, in different ways. We don't understand how -- our best neuroscientists are little more than village shamans in some ways -- but we know that occasionally the brain finds a way.

Sometimes the human brain is unbelievably fragile and breaks in ways that we can't fix or even comprehend. And then sometimes it just kicks this hard world right in the ass.

The teachers and therapists and diagnosticians at Schuyler's school are smart people. They have years of experience and they have methodologies that have proven effective with a huge number of students. (The Plano Independent School District is massive, with over 54,000 students.) They've had a lot of success stories, and as a result, they have a great deal of well-deserved belief in their systems and their procedures and their data. Their faith is in themselves, and perhaps that's justified.

We have faith in Schuyler. We have faith that her weird and wonderful mind is going to continue surprising us all, in ways that can't be predicted but might be harnessed from time to time, if we open ourselves up to the possibility and commit ourselves to educating HER, this one unique kid, in ways that we've never tried before. We're putting together some things to try over the summer to attempt to do just that.

What if we're wrong about her? What if our optimism is, as one person put it, a product of the rose-colored glasses we're both wearing? (For those of you who have tried to paint this in terms of the befuddled father who just can't handle the truth, you should know that Julie and I are 100% on the same page regarding Schuyler and her abilities.) What if they're right? Then that's the way it goes. Our love for Schuyler certainly won't change, and if she's destined to live with me for the rest of her life, well, that probably sucks for her, but selfishly, I'll be just fine with it. Schuyler is Schuyler, and my affection for her is not dependent on some benchmark she has to reach. Well, of course not.

Having said that, I want to be clear. We believe Schuyler's diagnostician is wrong about her. And we think the rest of her team was wrong, disappointingly and shamefully so, to stand behind this report and to lower their expectations for Schuyler just because they have yet to reach her THEIR way. But I'm glad that Schuyler is in a school that will be ready and more than able to change course and educate her once she begins to confound their scientific, pedagogical, data-crammed predictions.

I'm not sure I have faith in their system, not like I once did. I certainly don't believe in it as strongly as they do. But I understand history, and I have just an inkling of an understanding of Schuyler, so that's where my faith lies. She's done it before. I believe she'll do it again. That's my faith.

Truth can be a monster, too

Monster hands
Originally uploaded by Citizen Rob

I go out of my way to portray myself as a big shot author and disability advocate. Just look at that suit, after all. I must know a lot about this stuff, which is why I get asked to come speak, right? And if I post enough photos or event notices, you might just forget why I'm really here, and why I had a book published in the first place, and why people really ask me to speak (unless they are Baptists). If I'm tricky enough, you might just forget that all I am is a father, and everything I do is in that capacity. Am I an author, or a father who wrote a book about the only thing I seem to know how to do? Does that distinction even matter?

I'm a father, and not just a father, but the father of a mysterious and broken little girl whom no one in the world seems to understand completely. Not her teachers, not her therapists or diagnosticians, and not her extended family. There are times that I think maybe I understand her, but of course that's not true. I try my best, but I am crippled by my love for her, which sounds like a wonderful thing but in reality is wrapped in fear and bias.

I've written in the past about our resistance to the desire of the school's educational diagnostician to administer a new cognition measurement test to Schuyler, with the aim of a more accurate IQ number that, in her opinion, would likely place Schuyler in the range associated with mental retardation. When it came up again early this semester, we didn't grant permission to administer the test that would measure cognitive impairment (and would include the IQ number and possible MR label), but we went ahead and gave permission to give the rest of the evaluation, which would measure academic skills and performance.

We got the report this week, and it was pretty negative. The diagnostician prides herself of her straight talk, which I appreciate, mostly. She believes Schuyler is retarded, to put it bluntly, and we do not. It's a difference of opinion, although I don't think of it like one of those Coke-or-Pepsi, Mac-or-PC things where we can just agree to disagree. This matters. But still, she's a professional and her opinion counts.

The report doesn't say this, of course, since we refused the cognitive evaluation. But it presents a pretty bleak picture of Schuyler's abilities. And it caused us to begin asking questions about Schuyler's present and her future.

At her annual IEP meeting today, those questions were answered.

So here's the part where I confess that I've been lying to you about something. I haven't been doing it intentionally; until today, I thought it was true myself. But here it is, our new truth.

Schuyler isn't really being mainstreamed. Not to the extent that we believed, anyway. Schuyler goes to a regular fourth grade classroom for science and history and special little projects, and of course she goes to art and music in regular classes. But the bulk of her academic work, the core subjects like reading and writing and math, these take place in her special education class, and the work she's doing there is not age appropriate. Her progress is steady, but not enough to bring her out of special education, and according to her team, she is unlikely to ever catch up.

When I expressed our goal of having Schuyler primarily mainstreamed by the time she leaves middle school, we were told flat out by the diagnostician, with the silent agreement of the rest of the team, that Schuyler is very unlikely to reach that point.

How do we feel? I can't speak for Julie, but for myself, I feel like I've been living a big joke. I feel like in my mind, Schuyler was a serious student with a real shot at living and succeeding in the neurotypical world, but to her teachers and her team, our goals were unrealistic. At one point the diagnostician said that she understood our need to be unwavering advocates and to believe that anything was possible, before she pointed out that it was her job to present the facts as she determined them. And in her eyes, Schuyler isn't just delayed. She has a significant cognitive impairment, and that's that.

We know Schuyler is delayed, yes; remember that she didn't have any real expressive language until the age of five. Her brain and her world developed internally, without language or much real guidance, and I've always believed that the key to reaching her was to understand her world and how she moves through it. But perhaps I'm alone in that belief. We have always understood that she was behind, but it wasn't until today that we really faced the possibility that she might not have the capacity to ever catch up.

I've stood in front of audiences of approving therapists and parents who wanted to believe me almost as much as I wanted to believe myself, and I've told them that thanks to her AAC technology, her good school program, her unstoppable will and her broken but clever little brain, Schuyler was spending the better part of her day in a regular, age-appropriate class, doing the same work as her fellow fourth graders and well on her way to graduation and success.

But as I found out today, that wasn't true. Today I found out that Schuyler may be uniquely broken, but she's got a struggle and a future ahead of her that's identical to thousands of other kids. She's in a school that will continue to teach her and care for her better than most, but one that has a realistic, data-supported expectation for her abilities that we cannot share.

I love my little girl, more than I ever thought possible, and I believe in her with everything I am. But today, I faced the fact that my love for her might just be blinding me. 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.

Uninvited

A few weeks ago, I was invited to speak to an autism book club at a large Baptist church here in Plano.

Yeah, I know what you're thinking. I know because I thought the same thing. Well, two things come to mind, actually. The most immediate might just be that Schuyler isn't autistic. And that was the first thing that I pointed out to the organizer. But she assured me that it was fine, and that it was my experience with disability parenting that was important and the reason she wanted me to speak to her group.

I didn't mention the other thing, the fact that I'm not a Christian.

Well, no. I didn't mention it because while you may think whatever you like about my religious beliefs and the fact that I am not a Christian and am not raising my daughter to be one, the one thing you have to admit is true is that I have never pretended otherwise. I've never shied away from talking about my faith; my agnosticism has been an irritant to both my Christian and my non-believer friends alike.

My book surprised a lot of people (including me, honestly) because of the amount of ink I spilled discussing God. My Christian friends were disappointed that I didn't embrace Jesus at the end and instead described what was, at best, something of a truce with God. And my fellow heathens were puzzled by, well, the same thing. I may have been shaking my angry fists at the sky, but as my mother pointed out when she read it, at least I was still talking to God. We might be in need of couples counseling, but I hadn't dismissed the idea altogether.

Which is why I thought it sounded like a solid idea to talk to the Baptists. I haven't had very many positive dialogues with Christian groups like this in the past, but I'm not opposed to the idea. I assumed that the organizer of this book club had read the book and saw a deeper spiritual journey going on, and one that merited discussion with the faithful of her group.

Turns out, she hadn't read the book. Not yet.

As she made her way through the book, I could sense from her emails that she was troubled. I got several "I'm on page 154, and I've got some questions..." emails, which I tried to answer as best as I could. Particularly on the topic of my own beliefs, I said this:

For me as an agnostic, it is, in some ways, that lack of what others call "faith" that sustains me. It leaves open the possibility of something greater, something beyond my understanding, and it gives me hope that love is bigger than the cramped, mean world that we live in. And if I can't believe I know the nature or the origin of that love like the Christian believes, I also make room for it anyway. Which I suppose is its own kind of faith.
(...)
In the end, you know what's in your heart, and THAT'S the place where you keep your own faith. And while that sounds sort of lonely, I also find a great comfort in it.

Once we really began talking about it, her emails eventually turned into "I want to help you". I guess it's only because I'm a little slow that I didn't see the next thing coming.

I got uninvited to speak to her church's Autism Book Club.

I don't generally like to quote from private email, but since this event had already been publicized in advance (including by me) and my daughter's smiling face had already graced the club's website before being pulled without warning (before I was even officially uninvited), I feel like this one sentence of explanation is relevant. More to the point, it says a lot about, well, a lot.

"My book club is promoting Christianity as the answer to life's problems and that's what people are expecting when they walk in the door."

So there you go. Am I bitter? I don't like to think of myself as a bitter person, but yeah, I suppose I am, at least a little. Am I disappointed? Absolutely. But most of all, am I a little less likely to agree to a dialogue like this in the future? Does this feed my natural predisposition to distrust an agent of an organized Christian group? Yeah, it really does.

I have been asked on more than one occasion if I plan to teach Schuyler about Jesus, as if NOT doing so was somehow unAmerican. And I've been told that I am somehow limiting her future if I don't. Christians teach their kids what they believe, and while the best of them give them a choice, they still teach through their own biases. That's not even a bad thing. It's the nature of parenting, and it's part of how humans have built their tribes for thousands of years.

Well, for those questioners, I have good news, and I have bad news. The good news is that yes, we fully intend to teach Schuyler about Jesus Christ, among the other philosophers of history.

The bad news is that we intend to teach her about Christians, too. The good, the bad and the ugly. Because we're promoting information as the answer to life's problems.

Mean: A Play in Two Acts

Flygirl
Originally uploaded by Citizen Rob

ACT I

Julie picks up Schuyler from school. Schuyler is in a very sad mood, not making eye contact and seeming to be on the verge of tears.

Julie: Schuyler, what's wrong?

Schuyler: I'm sad.

Julie: Why are you sad?

Schuyler: Because you think I'm a loser.

Julie: No I don't! Schuyler, where did you hear that word?

Schuyler: Jackie called me a loser today.

(Jackie is a girl in Schuyler's class who has said things about her before, including the worst thing that you can say to Schuyler, who has the biggest heart in the entire world: "You're not my friend.")

---

Later, talking to Schuyler about the incident.

Rob: Did Jackie call you a loser at school?

Schuyler (sadly): Yeah.

Rob: You know you're not a loser, don't you?

Schuyler: Yes, Daddy.

Rob: We're going to Nashville in a couple of weeks so that a bunch of really smart people can hear all about you and how you use Pinkessa to talk. Do you think they want to come learn about you and meet you because they think you're a loser?

Schuyler: No.

Rob: No, they think you're the coolest, and so do I. So does anyone who matters. Do you think Jackie's opinion matters? It doesn't. She's just trying to be mean. Anyone can say mean things. Don't let it bother you next time.

Schuyler pauses and smiles, then she waves her hand in front of her face and laughs.

Rob: What? She smells?

Schuyler laughs and nods.

Rob: What does she smell like?

Schuyler points at her ass and laughs hard.

Rob: She smells like butt? Like a monkey butt?

Schuyler: Yeah!

We get Pinkessa so Schuyler can tell me, "Jackie smells like a monkey's butthole." I help her with the spelling. I'm not sure if this makes me a good or terrible father. Julie looks at me disapprovingly.

Julie: You're going to get her in trouble.

Rob: If she gets sent home for saying something, I'll punish her with ice cream.

Schuyler returns to school the next day, and for the rest of the week. She does not tell Jackie that she smells like a monkey's butthole. Sometimes I think she really does get when I'm kidding.

END ACT ONE

---

ACT TWO

Julie takes Schuyler to see a movie that they both want to see, but which I think sounds like the kind of thing that Jack Bauer would show captive terrorists to tell him where the bomb is hidden, so I pass. While standing in line, Schuyler sees two girls, one of whom she knows from school. The mother of the girl also seems to know Schuyler, or at least who she is, and tries to engage her with complicated questions before chatting up Julie.

As they talk, Julie hears the girl from Schuyler's school talking to her friend, who attends a school in Frisco, not Plano.

Plano Girl (giggling to her friend): Watch this. (to Schuyler) Hey, Schuyler! Say something! Talk for us!

When Schuyler says something, the girl laughs at her. The Frisco girl doesn't laugh, to her credit, so the Plano girl says it again. This time the girl's mother hears her.

Plano Mom: That's enough of that!

Julie excuses herself and pulls Schuyler away. After they enter the theater, Schuyler sees her "friend" sitting a few rows down and tells Julie that she wants to sit with them.

Julie: No, Schuyler. They came to have an afternoon together, and they didn't invite us to join them. We don't invite ourselves to other people's get-togethers. That's not polite.

She neglects to mention the fact that the little girl is horrible.

Schuyler protests before slumping down in her seat in a full-blown sulk. Finally she looks at Julie with a frown.

Schuyler: You're mean.

Julie: I know, I'm sorry.

Julie doesn't tell Schuyler the truth, that she's not mean, but rather she's protecting her from a mean girl, another one, and just one of the many who will come along in the future. Schuyler is too innocent to recognize that the girl was being mean to her, and Julie would like to keep it that way forever.

Which is, of course, impossible. But we try. God knows we try, knowing that we'll lose one day. Because when a girl calls Schuyler a loser, it breaks her heart. But when a kid mocks Schuyler because of her monster and she doesn't even see it, and still thinks the girl is her friend, well, when that happens, ours are the hearts that break.

Schuyler will figure it out soon enough. And then there'll be broken hearts enough to go around. Plenty for everyone.

END ACT TWO

Tomorrow Monsters

Schuyler
Originally uploaded by Citizen Rob

There's an issue that has been lurking in the future, like so many of Schuyler's do.

Julie and I worry about the future a great deal with Schuyler, and we always have. Part of that fear experience is just one of the joys of parenthood, I suspect. As watchers and protectors of our children, we're always waiting, always watching for the next Big Bad Thing that will step out of the bushes and harm our living, walking hearts. That's what children are, I've been told, they are our hearts set free into Life, walking around and challenging this grand rough world to do its very worst. And as parents, we watch helplessly, knowing that if the worst happens, it's our hearts that will die, too. It's the part of parenting that no one explains beforehand very well, because it's hard to talk about, and besides, you wouldn't understand anyway. You get it only when your own chaotic heart takes reckless flight in dirty tennis shoes.

So the future. Schuyler's future isn't the bleak thing we were led to believe it would be, by doctors spinning worst case scenarios and teachers afraid to admit that they didn't know what they were talking about and afraid to offer hope instead of fear. Schuyler's present is good. It's not perfect, but it's better than we thought it would ever be, and certainly better than a lot of broken children, maybe even most of them. Schuyler's future is crammed with promise, but it's a murky thing that neither I not Julie nor anyone else can really see.

So, bereft of concrete obstacles, we identify future monsters instead.

One of the scariest of those future monsters is middle school.

Well, I think we all remember middle school. I actually attended junior high school, grades 7 through 9, before ending up in high school for the last three years, so my memories are a little different, but still. I also taught trombone students for a long time, mostly middle school, and the thing I remember the most is how weird they all were. It's a wild age, when kids actually start to become the people they'll be for the rest of their lives, but they haven't yet been beaten into the grooves and the niches and the cliques that high school enforces. They are weird kids, and they're just starting to figure that out, so it's a really interesting but dangerous time for them.

We've been fearing middle school, in part for that reason, because even among the weird kids, Schuyler brings a lot of extra weird to the table. It's not a good age to suddenly be different. Just the thought of it makes me a little sick to my stomach.

The greater uncertainty for us, however, has been of how exactly Schuyler's AAC class presence was going to extend into middle school and high school. That's been the plan for a while now, according to her school. As her pilot class progressed through the system, the AAC program would grow with them, always giving them a home base of support, all the way through graduation. Our biggest concern has always been how this plan was going to be implemented exactly.

Today, we got an answer. It won't be.

When Schuyler finishes fifth grade (next year, unless she suffers some catastrophic academic failure), she will leave her school and her AAC class and will start middle school at her home campus. She will do so without an AAC class to go to, without (as far as I know) any permanent place outside of her mainstream classes where she'll be supported by anyone trained in assistive technology. An assistive technology professional, one of Schuyler's former teachers most likely, will travel from campus to campus in this huge school district, and that will be it. As is the case with so many mainstreaming situations around the country, in slightly less than a year and a half, Schuyler will learn to swim, or she will sink.

And suddenly, the future has a monster whom we can see much more clearly. And it's bigger than we thought it would be.

I'm going to be honest here. We're disappointed, bitterly disappointed, but we're not entirely blindsided by this decision. When the original plan was presented, I wondered at the time whether it was one that was going to be realistic. From the school district's perspective, they are continuing to support a program that gets to these kids at the most crucial age, and they're right. Furthermore, if I'm going to continue to beat the drum on behalf of inclusion, then this is where I get to put my money where my mouth is, I guess. And I know, all too well, that receiving even this much AAC support and instruction is wildly beyond what the vast majority of these kids receive in other schools and other communities. The Plano schools have gone above and beyond for Schuyler and her friends, and I will never diminish that or lose sight of exactly how much of a difference it has made in her life. We are extremely grateful for everything they've done and continue to do for Schuyler, and we're hopeful that the Plano school district's commitment to our daughter and her friends will continue to be strong.

But the future just got murky again, and that makes me feel sick inside. For the past ten years, and particularly since the diagnosis, Julie and I have worked hard to provide Schuyler with consistency and support. We've both sacrificed more than perhaps anyone realizes in order to make that happen. And yet, I have failed Schuyler, time and time again. Sometimes in small ways, and other times in monumental, broad strokes of stupidity and selfishness. I have considered acts of extreme selfishness and pain and betrayal that have left me now feeling evil and haunted and guilt-ridden. I've been both a good and a horrible father, but I try to do my best, and when I open my eyes and truly see what's at stake, I like to think that I find the path again, even if I've wandered far into the woods.

Julie and I have given a lot, maybe given our all, in order to give Schuyler a shot, and when we moved to Plano, we thought (perhaps foolishly, as all parents of the broken do from time to time) that we'd found the answer, and that it would sustain her through her school years. Now, I just don't know. Julie asked me tonight if this meant that we might have to move again. I said I didn't know. Honestly, I don't know where we'd go if middle school turns out to be a disaster for Schuyler. Plano schools are among the best in the country, particularly for special education. If they can't take care of her here, then who can?

When I spoke to Schuyler's principal today (a very nice woman who has been among Schuyler's greatest supporters, and who did not seem to enjoy this conversation one bit), she said that Schuyler would have a couple of options. She could finish out fifth grade at her current school in her current program and then start sixth grade with a whole new bunch of kids who haven't spent the past few years getting to know her and who wouldn't immediately understand her very unique set of circumstances. Or she could transition early to her home elementary next year so that she'd get to know some of the kids who would then join her in middle school the next year. That last option sounds sort of awful to me; not only would she lose a year of AAC instruction, but she'd then have to experience changing schools twice in two years.

I asked if it would be possible for Schuyler to transfer to the middle school that her current elementary feeds into so that at least she'd have the same group of friends. It's a possibility, but we'll have to apply for permission to do that, and the middle school may already be closed to transfers. She'd no longer be eligible for the transportation that she now receives, but we could deal with that. The sooner we can walk away from the stigma of the short bus is probably the better for her.

None of the answers feel adequate. Selfishly, I want the school to make good on its admittedly far-fetched promise to take care of Schuyler and her classmates, to give them a place to continue their AAC training, of course, but also to give them a home perch to fly back to when things get daunting. Because they WILL be daunting. That much is certain.

I believe in Schuyler more than I believe in God or Love, but I believe in monsters, too.

A Fat

Okay, Amazon. Now you're just being rude.

Dispatch from Beleaguered Tokyo

First of all, the CEO of Macmillan, John Sargent, has responded to the Amazon brouhaha. (When I see that word "brouhaha", I imagine it spoken with rolled R's and bugged eyes.) So the rumble appears to be on. (More good observations from John Scalzi, Cory Doctorow, the L.A. Times, and Scalzi again.)

For those of you who aren't following this, here's the quick and dirty version. (Not actually all that dirty, sorry.) Along with a number of other houses, Macmillan (whose imprints include Straus & Giroux, Tor, and my publisher, St. Martin's Press) has been pushing for Amazon to change their pricing structure for electronic books from a flat charge of $9.99 (an artificial price point, I believe, intended to drive sales of its electronic reader, the Kindle) to one set by the publishers themselves, giving them the option of charging up to $15. Amazon's response has been along the lines of "Or what? You're going to take your business to some other gigantic, popular company and THEIR ebook reader? Let us know how that works out for you."

This week, you might have heard that Apple released the awkwardly-named but undeniably snazzy iPad, and along with it announced their new iBooks store. In doing so, they signed agreements with a number of the biggest publishing houses, including Macmillan. Those agreements apparently grant these publishers more pricing flexibility. The New York Times picks it up from there:

Macmillan offered Amazon the opportunity to buy Kindle editions on the same “agency” model as it will sell e-books to Apple for the iPad. Under this model, the publisher sets the consumer book price and takes 70 percent of each sale, leaving 30 percent to the retailer. Macmillan said Amazon could continue to buy e-books under its current wholesale model, paying the publisher 50 percent of the hardcover list price while pricing the e-book at any level Amazon chooses, but that Macmillan would delay those e-book editions by seven months after hardcover release. Amazon’s removal of Macmillan titles on Friday appears to be a direct reaction to that.

That's right. On Friday, Amazon pulled every single title published by Macmillan, including mine, from its site. The titles are still listed, but there's no way to buy them except via third party vendors. (This only applies to Amazon's US site, and also doesn't appear to include overstock sales like the one I mentioned the other day.)

As to why Amazon is doing this, especially given the fact that the removal doesn't just affect Kindle editions but all print properties as well, I can only assume that the company is operating under a business model best encapsulated as "No, fuck YOU."

I'm not going to pretend that all has been smooth sailing between St. Martin's Press and myself where ebooks are concerned. A number of you have written to me asking why Schuyler's Monster was only available for the Kindle for a brief time before being removed. Apparently the original scan from the company was fuzzy and it was pulled for quality control. But despite my repeated titty-baby whining, St. Martin's has been slow to replace that scan, and at this time, Schuyler's Monster is unavailable as an electronic book in any format. I've been extremely frustrated by this over the past several months, and so I'm not exactly filled with unconditional love for SMP's digital division at the moment. That's just my anecdotal experience, but it's the only one I have to go on.

But in this clash of the Big Companies, only one of them is intentionally and cynically screwing with the livelihood of authors. Only Amazon has shown such callous disregard for the writers who make their whole industry possible. I've twice visited the offices of St. Martin's Press, and it's not some fancy shining hub of cold, calculated commerce. Up on the top floors of the Flatiron Building in New York, you'll find offices full of manuscripts piled on every available flat surface, and you'll also find creative people (mostly young) who run around frantically, making books happen. And even in the face of the scary-boo economic factors crippling the industry, these folks are giddy about their work. They're book nerds, operating on a very thin margin, and every author I've ever talked to who has been published by them has expressed the same thing, and it's the same thing I've felt as well. Macmillan takes care of its people.

This whole situation just stinks, and I have no idea how long it'll last. Not long, I suspect, hopefully just a few days just to see if Macmillan blinks. I hope they don't. And I hope they're not the only publisher to demand a little free market behavior from Amazon, either. Amazon is a great company and God knows a huge number of the trees I've killed have gone through their warehouses on the way to readers like you. (Eh, trees. Fuck 'em.) But I believe Amazon is acting like a petulant bully in this instance, and the people who are being hurt most directly are consumers and authors. Being both, I don't like it, not one bit.

This would be a much worse situation for me personally if my book had only recently been released, and I recognize that. But still, I can tell you what it feels like, being the author of one of the books that just lost one of its largest outlets for sales, all because two big companies are squabbling over money and the future of the ebook trade.

I feel like a citizen of Tokyo, watching Godzilla and some other monster fighting it out in the streets of my city.

Even if my monster wins, my house still gets squashed.

---

UPDATE: Blink! My favorite part is this seriously weird quote from Amazon:

"We want you to know that ultimately, however, we will have to capitulate and accept Macmillan's terms because Macmillan has a monopoly over their own titles, and we will want to offer them to you even at prices we believe are needlessly high for e-books."

Um, I believe the word you're looking for is "copyright".

-----

UPDATE REDUX: John Scalzi sums it all up nicely.

-----

UPDATE CUBED: I'm linking to Scalzi a lot these days; he's been particularly on-target with this issue lately. Today, he looks out for the citizens of my metaphorical Tokyo. Thank you, John. Your fellow authors appreciate it.

-----

UPDATE FINALE: After exactly one week, Amazon has gotten around to restoring the links to Macmillan titles, including Schuyler's Monster. I'm guessing it'll be at least that long before I return the favor. I'll put it on my To Do list. No, really.