Le Roi est mort. Vive le Roi.

The Jaspers
Originally uploaded by Citizen Rob

It was perhaps tragically fitting that my last post included a photo of Schuyler with her beloved friend Jasper. If you've read the book, or if you've been around for a while, you know that Jasper is Schuyler's oldest inanimate friend.

He was originally purchased while Julie was pregnant so that he could ride around in my car with me and let me see if I could ever get accustomed to the name "Jasper" in case we had a boy. I couldn't, of course (could you?), but the name stuck, and after a period of rejection by Baby Schuyler, he eventually became one of her most treasured friends. She even insisted on a girlfriend for him. (They have a baby bear, too.)

Julie and Schuyler fell asleep on the big floofy chair in the living room tonight, and at some point, Jasper slipped from Schuyler's grasp and fell to the floor, met by the gaping, slobbery maw of Max, Schuyler's very very very bad little dog. The rest you can probably figure out.

I looked over and saw the tragedy unfolding before it could get very far, and I managed to snatch poor Jasper up and take him to the other room before Schuyler could notice. The damage wasn't horrible, but it was bad enough. Ears chewed, one foot stripped of its fur, and most horribly, an eye completely missing. Jasper had been disfigured to an extent that couldn't be fixed.

Well, this is one of those parenting moments where they don't exactly tell you what you're supposed to do, now isn't it? What's the right thing to do here? Let Schuyler face the ugly truth and see what her nasty little hellhound had done to her best friend? Or run to the mall and pray that the Gap (Jasper's port of origin) would carry another that looked like him and try to slip a new Jasper 2.0 past Schuyler? In general, I am all about letting Schuyler see the world in all its grandness and all its pain at the same time, but tonight, I just couldn't do it. Ten minutes to drive to the mall, five minutes in and out of the store, and a sly switcheroo after she had crawled into bed in which she accepted the doppelgänger under darkened conditions, and the deed was done.

We'll see if it worked in the morning. These little Gap bears all seem to be a little different (lovingly hand-crafted by Chinese slave labor, no doubt), and Jasper Mark II looks a little different from his now one-eyed predecessor. Julie and I aren't in agreement on this, by the way. She feels like Schuyler is tough and could deal with the truth. I guess I agree, but then, I feel like she gets to handle the tough truths a lot. I will say that if Schuyler isn't fooled and notices the difference, then I'll come clean with her.

As for poor old Jasper, I think I'll take him on the book tour with me, one last hurrah for the little guy, and then maybe get him an eye patch and seal him up for the future, to be given to Schuyler when she's older and ready for a foolish, sentimental gift from her old man.

This was a tough call. There are times for me, I suppose, when honesty in parenting takes a back seat to the preservation of the fragile world that Schuyler creates. I'm not sure myself if this was the right thing to do. I only know that there's a lot I'll do in this world, right or wrong, to make Schuyler happy.

---

Happy trails, Jasper...

Apology

As you'll see when you finally get a chance to read SCHUYLER'S MONSTER, I don't shy away from talking about my own shortcomings as a father. No one's perfect, and sometimes I feel farther from from that perfection than most. And today, I need to address something.

I owe an apology. To Schuyler.

The first time I wrote an article for PajamasMedia.com, I wasn't completely aware of just how conservative their readership was, but if I had gotten a better feel for the site, I probably would have written for them anyway. My own liberal outlook doesn't mean I'm closed to conservatives and their beliefs. One of Schuyler's most adamant and consistent supporters, going back for years, is standing out on the very leading edge of the right wing, his toes dangling happily in the wind. Julie's parents are pretty conservative, and few people do more for Schuyler on a daily basis than they do. One of the themes of my first essay on PajamasMedia, and a big chunk of the book as well, addresses how wrong I was to prejudge the conservatives of Plano in the first place. I don't believe that the issues surrounding special needs parenting fall into partisan ideological areas, any more than the monsters that stalk these kids do so according to how their parents vote.

Nevertheless, after some of the personal comments left on that first essay, I wrote a second essay with some hesitation, and sure enough, the reactions were incrementally worse. I wasn't bothered by the personal attacks this time, either, although I did make an attempt to clarify a few things and also to defend myself against one particularly dishonest remark. (And a reminder to the kids: RESPONDING TO TROLLS IS ALWAYS ALWAYS ALWAYS A MISTAKE.) I was accused of being bitter and rude, as if the opponents of inclusion would happily invite our broken kids into their kids' classrooms, if only we'd just ask politely. I was accused of ignoring the plight of kids whose problem is that they are too gifted for their public schools, which is absolutely true. I certainly don't oppose the same kinds of programs for exceptionally gifted children as for those with disabilities. Not one bit. Why would I? It's simply not my fight, and it's not an issue that I know much about, so I didn't take it on. And best of all, I was even accused on one site of being a wealthy, pretentious snob, mostly because I have a hyphenated last name. Everyone knows that hyphens are plated in gold. I keep mine in a special vault.

But when someone posted at length last night about how my "feeble minded" child was destroying the schools for the rest of the kids, it bothered me. It bothered me even more when PajamasMedia deleted the comment today. The comment was rude, and it was vile. But it wasn't obscene and it wasn't threatening. I feel like perhaps they cut it because they were embarrassed by having one of their readers say something so ugly about a little girl, but I can also accept that they chose to delete the comment because they felt responsible for exposing Schuyler to something like that.

But they're wrong. They're not responsible. I am.

This blog and the upcoming book are going to open the door for all sorts of experiences for Schuyler, and while I expect most of them to be positive, we're prepared for the occasional ugliness as well. But in the case of PajamasMedia, I chose to go back into an arena that I knew from experience was likely to be hostile, and I took her with me. My only excuse is that I didn't think it through, and once again I underestimated the capacity for people to become animals when sitting safely and anonymously behind their keyboards.

Schuyler is a warrior, and she gives her monster a thorough beatdown on a regular basis. I suspect that if she were old enough to understand the worst of what was being said about her online, she'd simply fire up her Big Box of Words and send a two word response (hint: not "happy birthday") before going off to live her life, loudly and unhesitatingly.

Nevertheless, I invited more monsters into her home, and for that, I can only say that I was wrong to do so, and I am very, very sorry.

Harvey does not in fact want to eat you

As an ugly American, I haven't heard of any of the parties involved, including Heat Magazine, but the sentiments are familiar. Make fun of a kid with a disability, get called out for it, issue a heartfelt apology, hope that people start buying your product again.

Heat magazine apologises to Jordan for using disabled son on sticker.

I am a steadfast advocate of freedom of speech, but it's nice to see someone get bitten on the ass for abusing that freedom. Dicks.

Thirty-ten

You know, I can't complain too much about this birthday. I mean, this is the year my book comes out, after all, plus I'm still alive, having managed to avoid eating or drinking myself to death or being killed by internet stalkers. My hair is graying a little and thinning a little, but not too much of either.

Still, though.

I have choices!

I have choices!
Originally uploaded by Citizen Rob.

So what is the thing that I should spend time fretting about today? The determination by the dealership that Julie's car is officially dead (turning us into a one-car family, with me working an hour away from Plano), or the fun fact that I do believe I am getting another kidney stone?

Decisions, decisions!

"Paths of Glory"

"Paths of Glory"
Originally uploaded by Citizen Rob.

I haven't written about this before now, mostly because I know how my writing about music tends to make crickets chirp and the baby Jesus cry. However, I thought Veterans Day presents a pretty good occasion to explain why I am boycotting the Dallas Symphony Orchestra.

Money concerns force DSO to drop concert

Britten's 'Requiem' 'very expensive'

One of the headliner concerts promised for the Dallas Symphony Orchestra's 2007-08 season is being scratched. Benjamin Britten's War Requiem, which was to have been performed under principal guest conductor Claus Peter Flor, will be replaced by another program because of money concerns.

"We were reviewing the budget for next year, and we determined the need to make a few programming adjustments," says Fred Bronstein, president and CEO of the Dallas Symphony Association. "It's a very expensive piece to produce, and we just determined it would be prudent to postpone it."

You know, I understand that the War Requiem is an expensive piece to perform. It requires a full orchestra, a chamber orchestra, a full chorus, a boys' choir and soloists, and it's still a rental piece. It's modern and difficult and probably not a huge audience draw, although every time I've seen it performed, it has been to a full house.

However, in a time of war, when the message of Benjamin Britten and Wilfred Owen is as relevant as ever before, and particularly in a community as conservative as Dallas, in which support for the president's increasingly unpopular and idiotic war remains inconceivably high, it is, in my opinion, impossible to cancel a performance of this piece without covering yourself in the stink of artistic cowardice.

I mean, the War Requiem didn't get more expensive to perform in the time since it was programmed by the DSO. But the statement that it stood to make about the futility and pity of war? That just becomes more relevant and desperate (and controversial, at least in this town) by the day. The War Requiem is a vastly important work, one that an audience has much to learn from. It represents the very best of what a contemporary symphony orchestra should be trying to accomplish, bringing music of the highest quality and most significant social relevance to a community. Canceling a performance like this one, even for financial reasons (or perhaps especially so) doesn't just disrespect the veterans who have faced these issues in a slightly more harrowing setting than a cushy concert hall. It disrespects art.

Because I have become a grouchy old man, I sent an email saying as much to the DSO back in May. After getting a response from an anonymous Patron Services Center representative (a response that felt like a canned response, which I found to be a hopeful sign since it suggests I'm not the only person who responded negatively), I sent the following, which pretty accurately represents my current thinking about the issue and the responsibility of artists in troubled times.

I did not receive a response. I did not require one.

-----

Subject: War Requiem
From: robert@schuylersmonster.com
Date: May 21, 2007
To: customerservice@dalsym.com

I understand the financial difficulties of putting together a performance like that. But it is also unfortunate and frankly suspect timing that this piece should find itself on the block in the midst of a controversial and politically charged time of war. Britten's piece is divorced of politics, addressing instead the undeniable horror, futility and suffering of war, topics that go beyond politics and patriotism and force the listener, no matter what their partisan beliefs, to look deeper. Regardless of the financial reasons for doing so, canceling your performance of this piece in particular sends a strong message, and not a positive one.

Music matters. The artistic choices that an orchestra makes send a message to a community. If this is a matter of purely financial concern, then I and a great many other will be watching your choice of replacement repertoire with great interest. I wish you the best of luck in maintaining your organization's artistic integrity as you make that choice.

Robert Rummel-Hudson
Plano, TX

Eagerly awaiting the revolution

Sometimes I get email from old skool readers asking why I don't write about politics anymore.

I don't know. I guess I usually just find it easier to stick my finger down my throat...

Angelic

Monument in Lights, 2/02
Originally uploaded by Citizen Rob.

I was channel surfing this morning and came across MSNBC's replay of the NBC live coverage from the morning of September 11, 2001. I came in after both towers had been hit and watched until the second had collapsed and reports were starting to come in about a plane crash in Pennsylvania, and was there a connection?, etc.

In my own 9/11 remembrance routine, the only thing I actually plan every year is a listening of On the Transmigration of Souls, the New York Philharmonic's 9/11 commission by John Adams. I usually skip the memorial ceremonies broadcast on television. I find it weird to visit the WTC site in person now, with its weird combination of new construction looking to a Bright Shining Future and all the reminders of the Day the Music Died Past, neither of which feel right to me. Watching it on TV is even worse.

But while I wouldn't exactly say that I enjoy watching the replay of the actual coverage, I do find it to be more affecting and real to me. It serves as a reminder of how it really felt on that day, the "what the fuck?" feeling that washed over us all. It's easy to remember the fear we felt as we watched the individual moments of horror unfold on the screen, but we forget until we go back and watch it again how unprepared we were to process those moments as they unfolded in real time.

This morning I watched as the first tower crumbled while Katie Couric kept on talking about something or other, only to be interrupted a few seconds later by someone pointing out that it appeared something was happening, perhaps a section of one of the buildings falling off. It was at least five minutes before someone actually said out loud that the tower had actually collapsed. It reminded me how even when our eyes told us what we were seeing, our brains were still trying to find some context.

Now, six years later, we have an expanded context. The new president who climbed on top of the rubble pile and issued a warning to the terrorists as the whole world stood behind him has been replaced by a lame duck reviled by the international community and even some members of his own party. The war we've been fighting and losing has replaced our capacity for horror and citizen outrage with a numb weariness. If there were another terrorist attack on this country today, I suspect the reaction, both from our citizens and the rest of the world, would be very different. Less shock, more "okay, here we go..."

Six years. I think this year is the first one in which it doesn't feel like it just happened. So much has changed in my own personal life as well. In 2001, we lived in Connecticut and were only beginning to suspect that Schuyler's lack of speech might be something more than just a delay. The day we faced a big monster in Manhattan, Schuyler's smaller monster still lay waiting to be discovered. She was not even two at the time, stumbling into toddlerhood even as the world in which she would toddle was changing as well. Now she's a little girl of almost eight, all legs and motion, and the world that changed is starting to feel a little old and dusty again, as if it had always been this way.

Everyone's memories of September 11 are colored by their own lives and experiences, so it's probably no surprise that to me, 9/11 is infused with thoughts of Schuyler, like two different colors of paint that have been swirled but not mixed. Less than a year before the towers fell, we had taken Schuyler there, and I have clear memories of her gazing wide-eyed up at the towers as she put her tiny hands against the cold surface of their sides, and of the very first time I ever heard her braying, unashamed laugh, the one that I hear almost every day now. I also remember with sober clarity our trip to the site a week after the attack, and how Schuyler's smile made a weary police officer cry.

"Look at that smile," she'd said as she bent down to meet Schuyler. "You are just like sunshine to me right now!"

When I sent my book off to my editor at St. Martin's Press, I braced myself for one chapter in particular to be cut, the one called "The Saddest Place in the World". It was one of the few parts of the book that was drawn largely from what I had written online at the time, mainly because when I went back and reread it, it said exactly what I wanted to say about September 11th. I was ready to fight for my Chapter Five, because while it didn't have much to do with Schuyler's monster, it had everything to do with the lives we were living. I wouldn't know how to tell her story without talking about what it was like, living in America and particularly right up the road in New Haven, in the shadow of those Great and Awful Days. When Schuyler was diagnosed two years later, her monster was born into a world already made monstrous.

My editor left it mostly untouched. Of all the things she has done for me and this book, that might be the one for which I am the most grateful, or at least that's how I feel this morning.

The chapter concludes with almost the same words as an entry from those days:

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

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

Past imperfect

Red
Originally uploaded by Citizen Rob.

It's been a strange week in RobLand.

My legal review with the very nice attorney representing my publisher went well, although it ended up taking five hours. I'm not sure who to thank, James Frey or my own snotty writing or just common sense, but yes, five whole earth hours that I will never get back.

They weren't wasted hours, either. I defended a great many statements, changed many of them slightly, and rewrote a few. What I have left is, hopefully, clean and fresh and litigation-resistant.

It's been a week for revisiting the past, in some ways. In the process of having the book vetted, a member of Julie's family got upset about a story that was in the book, one that was important to the story but admittedly didn't reflect very well on him. The attorney cleared the story, but in the end I changed it, although I regretted it almost immediately. I've never felt like a sellout until now. Julie's been supportive of this book, however, so I figured I owed her a little family peace in return. Still, it bothered me when I did it, and it bothers me still. I shall get over it.

I received two other pieces of news this week that left me feeling... strange. I spoke to my mother early in the week and discovered that my childhood best friend recently committed suicide. He had been extremely ill with some pretty serious stuff, and I suppose it just got the best of him.

I can't remember the last time I spoke to him, although it might have been twenty years ago. In finding out about his death, I realized that I didn't actually know very much about his life, the one that came after our summers of running around our neighborhood setting off illegal fireworks and sucking down enough Slurpees to, well, give a kid diabetes one day. He'd become an adult and so had I, and our paths only crossed once more, in a brief meeting while I was in college that I barely remember. Now I feel a sort of loss, not just at his death but, I suppose, at his life, too, the one I never knew.

The other piece of disconcerting news I stumbled across was that my ex-wife has a child. This one I'm not sad about; indeed, if having a kid changed her the way having Schuyler changed me, then I'm hopeful she is happier now than she was when we were together. It was still an odd feeling, however, if only because it made me think about that life I had and that path I didn't continue.

Julie and I discussed this recently, how it's hard to think back to the lives we had, both together and even before we met, before Schuyler was born. It's weird, too, because it's not that I don't remember the events of my life back then. It's just that in my memories, or maybe in the feel of my memories, Schuyler is there. When I think back to my wedding, it seems crazy to think that she wasn't sitting there watching. When I remember my father's death almost two decades ago, it's hard to believe that she wasn't there as well, patting my hand comfortingly and speaking softly in soothing Martian.

I suppose, in a way, that she's always been there. I said recently that in my writing before 1999, I was simply waiting for Schuyler to be born, but really, I suppose that applies to my whole life.

Nostalgia, and not the good kind

Serious girl
Originally uploaded by Citizen Rob.

I'm going to post this, and then I'm going to probably clam up about the situation until it resolves itself.

Short version: after Schuyler had a another bad day at her summer after-school program, we checked the data log on the Big Box of Words (which records all her key strokes with time and date stamps) to see if there was some clue as to what she was saying or doing at the time of her conflicts. And that was when we discovered that during her time at the program, she did not use the device ONCE. Not a single time. Monday, Tuesday and Wednesday, there is a five hour gap from when she left school to when we picked her up.

The assistant site director asked me today what her speech device looked like. This was two days after we looked him and the director both in the eyes and said that yes, she needed to use it as frequently as possible.

Things have gone so well with Schuyler for the past two years that suddenly having this situation blow up in our faces has an extra bitter taste.

Schuyler, the little girl girl with the world's most positive spirit and the taste for fresh adventures and new friends, told us tonight that she doesn't want to go back. I don't blame her.

This gets fixed tomorrow, one way or another.

Rough transition

Even monster slayers get the blues.
Originally uploaded by Citizen Rob.

I wish I could report that Schuyler's making an awesome transition to her new summer program, but the truth is, she had a bad day.

Schuyler has an incident like this about once a year, which is probably not too bad for a seven year-old. Today she got frustrated and kicked a kid, and then one of the program workers as well. I'm still not sure we've gotten the whole story, but she admitted that she kicked them on her device. She said the boy hurt her first, but she didn't have an explanation for kicking the staffer. She shrugged miserably when we asked her why she did it, because I don't think she understands having a temper, or how to respond to frustration.

It's a particular difficulty with nonverbal kids, especially when they are interacting with new people who don't understand how to communicate with her. That doesn't excuse her behavior, but this sort of thing doesn't just occur in a vacuum. The Big Box of Words requires patience from everyone, since it takes her some time to respond to questions or express what she's feeling. It's only the second day, but I'm getting the feeling that her summer program staff just doesn't quite get it yet.

Her classes have gone great, she got a glowing report today from her teacher. I was a little surprised since she's in class for four straight hours in the morning, which is a lot for a seven year-old. It would be a lot for me, come to think of it. But her class is fine. It's the after school program that's giving her fits, and we don't yet understand why.

One clue may have been the fact that they said she wouldn't use her device. That sent up a red flag because in the past, she's only balked at using the device when she was made to feel weird about using it, or when it was made unavailable to her. That's when she gets frustrated, when she can't be understood. She's in a situation now with people who can't understand any of her moonman words or her signs and who might not be encouraging her to use her device. That doesn't leave her with much, and that's when she typically feels trapped and lashes out.

Well, it's only the second day. She promised to apologize on her device to the people she kicked and to be the very best little girl she can be tomorrow, and I believe that she'll do just that. My friend Tracy wrote once that Schuyler's sorrow at disappointing me was a powerful thing, and Julie said the same thing tonight. I don't know if it's a "Daddy's little girl" thing or what, but it's a little heartbreaking.

After our long talk and mutual agreement on her punishment this evening and what would happen tomorrow if things don't improve, she looked at me sadly and started punching buttons on her device.

"I love you," she said.

"I love you, too, Schuyler," I said. "I love you so, so much."

She smiled for the first time all evening and climbed out of her chair. She came over and put her arms around my neck and hugged me as hard as she's ever hugged me, and for a long time.

All the people out there who feel like we need to be disciplining her physically (and I'm sure I'll hear from them again like I did last summer; maybe they'll pronounce her name correctly this time when they call me on the phone), they have no idea.

I'll never raise a hand to her, ever. I don't think either of us would be able to bear it.

RTFM

From Schuyler to Schuyler
Originally uploaded by Citizen Rob.

Well, as I write this, Schuyler has been at school and her after school program for most of the day, and so far, no panicky calls. I've been staring at my phone all day, daring it to ring, but so far, nothing. Which is good.

I have to say, however, that I don't have much faith that the current cease-fire in the Action Plan(!) skirmish is going to hold, particularly since I haven't heard back from Schuyler's doctor in Chicago. (Could it be that they are busy taking care of actual patients? How rude is that?) I predict a "So where's the Action Plan(!)? For the love of all that is holy, WHERE IS IT???" conversation when we go to pick her up.

I think I've decided on my next writing project, now that the book is off to St. Martin's. Every time Schuyler starts some new project, we go through some variation of this song and dance. The exception was her Box Class, but that was unique in that they had a lot of information on her prior to her arrival. Also, they are superheroes.

Anyway, I've decided that my next project should be a User's Manual for Schuyler, v1.0. Or perhaps a Guide to the Care and Feeding of Schuylers. (There's a joke that I'm showing some rare restraint by not making here. Email me if you can guess what it is.)

It'll have the necessary medical information, perhaps even a plan, you know? For action! It'll also have material about how she actually operates, what she likes, what she hates, what ASL signs she uses, what to do if internet weirdos (and perhaps book-reading weirdos) try to steal her and eat her, etc. All the things you need to know, with some jokes and fun photos, just as an incentive to actually read it.

The thing about Schuyler is yes, she's a mysterious little girl. But you know what? She's not THAT mysterious, not if you bother to get to know her.

When the path of least resistance isn't

Us (out takes)
Originally uploaded by Citizen Rob.

(Before I tell this story, I feel like I need to make something very clear, because it's sort of confusing. The program that I am discussing in this delightful rant is affiliated with Schuyler's school system, but they are not actually a part of the school itself. They operate on school grounds and work closely with the teachers, but their rules and administration are all their own. Schuyler's school district rocks the house and we are entirely pleased with the job they are doing. Scared yet?)

-----

You know how sometimes you feel like telling a long story, and then other times, when it's the same old crappy story on a brand new shiny day, you feel like just saying "Oh, fuck THAT" and never talking about it ever again?

We had a run-in with Schuyler's after school program, now her summer program, on Friday. On Friday at about 5pm, to be precise, when it was determined by the site director that Schuyler did not have the proper forms, in particular a "Medical Action Plan" (an animal whom we'd never heard of before), and would not be able to start the program on Monday, thankyouhaveaniceweekendbye.

Oh, fuck THAT.

I think I jumped right into Angry Dad mode, without much of the usual polite buildup. I don't feel apologetic or regretful, though. Julie spoke to the site director and called me to tell me the whole story, including how she felt like she had been shut down. These were the rules, it was our fault for not following them (even if we were never told about any of this, which apparently we should have been when we registered and, oh yeah, PAID for it), this is the way it was going to be, no exceptions, bye.

One thing that Shepherds of the Broken who have been in the fight for a while can tell you is this: the first answer you get from any program is almost never the final answer. The first answer is almost always the answer that provides the least effort for the program. That's not always a bad thing; most schools are overextended and need to streamline their workload as much as possible.

But in this case, it was at Schuyler's expense.

I called the program myself and was irritated to find that no one was answering the phone, because of course, it was after hours. This bomb had just been chucked at us on the way out the door. Fortunately for us, however, the site director also needed to fax the required form to Julie at work, and the fax hadn't gone through correctly. When she called to find out what was wrong, Julie asked her to call me because I was really pretty upset by this whole thing.

"Why, so he can yell at me?" the woman asked. "I don't need that."

I called her personal voicemail and mentioned that since she didn't want to talk to me on the phone, we could meet on Monday when we came to pick up Schuyler, who would in fact be attending that day. She called me back shortly thereafter.

So here's the short version. When a special needs child attends this particular program (which is connected with the school district but is apparently more autonomous than I'd thought), the program requires that a Medical Action Plan (in my head, it has an exclamation point at the end) must be in place with specific instructions on what to do in the case of an emergency. Let me say right now that I am in 100% agreement with this policy. Well, obviously.

The problem I had was that Schuyler has attended this program for the past year now. The only change is that she'll be at a different campus for the summer program. It's the same program, and the requirement for the Medical Action Plan(!) has applied all along.

I was slightly proud of myself for thinking of this particular argument early in the conversation, because it stopped her cold.

"So my problem isn't with the action plan," I said to her. "I think the bigger issue is why she was allowed to attend all year without one in place. If this plan is as important as you say it is, then it seems like your program has been operating in a pretty serious violation of the rules. Maybe the law, too."

In retrospect, I think I put her in a pretty difficult position. Either the Action Plan(!) is a very serious requirement and the program has been operating dangerously without one for almost a year, or it's one more piece of idiotic paperwork, and everyone can settle down and deal with Schuyler like a human child rather than a case number while we get the stupid Medical Action Plan(!!!) filled out for them. By the time we got off the phone (on polite terms, which was sort of a miracle considering what a dick I was at the beginning), we'd all agreed on the second option. Schuyler will attend the program, and we'll get the plan from her doctor in Chicago as soon as we can.

The thing that I think is important to note here is that the argument that Schuyler was somehow being neglected before is completely bogus. The program site director at her regular school is awesome and went to great lengths to meet with Schuyler's teachers and the school nurse. She became an expert in Schuyler's special needs, which at this point are not actually all that special.

Schuyler has some minor dietary restrictions for her swallowing disorder, meaning that things like crackers, chips, hard cookies and hard candy are out. It's also good to know the ASL sign for "potty", because if you make her stop what she's doing and spell it out on her device, things are probably going to end sadly. When the girl's got to go, she's got to go. And of course, there's always the (at this point theoretical) possibility of seizures, Schuyler's own personal Sword of Damocles.

So the site director at Schuyler's school knows all this, she's made sure that the whole team knows it, and it has been a very safe environment for Schuyler as a result. Did the site director fail to file an actual Medical Action Plan(!), or did the program fail to send that plan over to the new campus?

I have no idea, and really, it's not my problem. We made sure the team at her regular school knew what she needed, and Julie called the summer site director to personally make sure that her summer team knew what to do as well. They didn't, and they freaked out, and they decided that the easiest course of action was to simply refuse services to Schuyler until their bureaucratic requirements were satisfied.

Oh, fuck THAT.

My Review of the Battlestar Galactica Season Finale

Huh?

Why did my favorite TV show just turn into Lost?

I also can't believe it's not going to return until my book comes out. They have some explaining to do when it does.