Ghostly Girl

"And you'll be at home in the sky..."
Originally uploaded by Citizen Rob.

Ghostly Girl

Ghostly girl
Too light to stand on the ground
Nothing you do is done
And I can tell
You are not real
Girl, what are you doing here?
I don't know why I am here myself
No one else seems to know
Nobody likes a spook
Or so I've deduced
But I have loved some ghosts in my time
But that doesn't mean I want them around
I'd rather be lost than found
I thought I would lose my mind
But through your eyes I see
Past the billboards to the trees
And the flowering weeds
Grow throught the cracks of the city
And all these things will go
And all these seeds will grow
And you'll be home in the sky

(Lyrics and music by Jolie Holland)

Right choice, I guess

Stick girl
Originally uploaded by Citizen Rob.

Okay, so a brief update is probably in order. Let's see if the Wretched iBook of Despair will let me do this.

Schuyler had a great time at the amusement park, as everyone figured she would. When I dropped her off at summer camp yesterday morning, I talked to the impossibly young, impossibly pretty and impossibly perky counselor who has been my usual point of contact, and she said that the trip was a huge success and that Schuyler had no problems at all. Most of the staff are sort of gleefully clueless, but this one girl seems to know what's going on and is always polite to me, in a "I'm being nice to you, old man, but please stop looking at my tits" kind of way. I'm not sure why she still bothers after all these weeks, since it clearly isn't working.

That was a joke. Settle down.

When I got home from work and gave her the Big Box of Words back, Schuyler wasn't very communicative about her day. That wasn't a huge surprise. She's still at the stage where answering questions and making very direct statements are what she's most comfortable with. Observations and descriptions are still difficult for her, although every now and then she'll surprise us, like in a restaurant about a month ago when she heard an infant crying in the distance and, without any sort of prompt, used the BBoW to say "Baby sad."

So when I asked her what she did at the amusement park, she sort of struggled for words before finally raising her hand in the air and then swooping it down with a loud noise and a laugh in what was clearly a roller coaster descriptive motion.

Holy crap, is my baby girl riding roller coasters? I'm going to be killing boys and burying their bodies in the alley in no time at all.

Dispatch from the Abyss

Okay, quickly, and I hope this posts, my laptop is dying again, despite heroic efforts to keep it alive. Unless someone wants to send me a giant box of money, I may be sporadic for a while.

Schuyler had a good time yesterday, like everyone knew she would. I'll write more when I can.

Tough choice

Schuyler talks
Originally uploaded by Citizen Rob.

I'm sitting here at my desk at work, and I have Schuyler's Big Box of Words with me. I do believe that aside from that horrible day or two back in Austin when her summer school teacher took it away from her, it's the first time she's been without it in over a year, since she first started using it. And it's making me a little crazy.

Her summer camp is going to an amusement park today, a big one, and none of the kids are bringing backpacks. We thought hard about what to do. We could have insisted that she be allowed to take it anyway, and I'm sure they would have gone for that. But with the counselors occupied with kid wrangling, she would have been responsible for keeping up with it and would have been excluded from a lot of the activities that the other kids would be experiencing. We could have kept her home rather than run the risk of her getting into a situation where she needed it and didn't have it, and believe me, we considered it.

After I talked to the counselors and determined that at least one of them knows sign language, I decided to stop being such a worrying freak and just Let. Her. Go. The park is in the same city where I'm working, so I made sure they had my business card and could call if there was a problem or if she needed her device. I'm like five minutes away.

And so I sit here, trying not to be anxious and trying not to second-guess the decision to send her off to have a day of wordless summer fun. In theory, we've always said that her device is her voice and it should be with her at all times. In practice, that's not always feasible. When she's on the playground, for example, she doesn't take it since it could be damaged and she can't see the screen in direct sunlight anyway. Obviously, when she goes swimming, same thing. When she's older and can take more responsibility, that will change, I'm sure.

The difference this time is that she's going a whole day without it. I wish I knew that we'd made the right decision.

I spent the evening with a good friend of mine who works as a nanny, and there's a small chance that she may be able to watch Schuyler next summer. Here's hoping. She's Schuyler's favorite grown-up, and one of mine, too, come to think of it.

I wasn't too smart back then, either.

For those of you who don't know that I was married previously, this might come as a bit of a surprise, but I realized something at lunch.

If I was still married to the First Mrs. Rob, today would be my twentieth wedding anniversary.

Man oh man. I feel a little like the dinosaur who managed to pull his foot free from the tar pit and walk away...

The Things We Fear

Horns, by Luke Chueh
Originally uploaded by Citizen Rob.

Julie sent me a link yesterday, to a site about a little three year-old girl in Connecticut named Faith Autumn Tremblay who suffers from a rare brain disorder called Periventricular Heterotopia. Julie heard about Faith from one of her friends back home in Connecticut whose company has partnered to help this family and who actually got to meet and spend time with her.

The story sounds familiar, with lots of testing and worrying and trying to identify a rare brain disorder. But it wasn't until I followed some of the links to learn more about Periventricular Heterotopia that I realized just how much she has in common with Schuyler. I recognized the name of the Christopher A. Walsh Laboratory in Boston as soon as I saw it.

Dr. Walsh is one of the doctors who, along with Dr. William Dobyns (the doctor in Chicago that we went to see last year), is a co-investigator in the Polymicrogyria Research Collaboration. It's an NIH-sponsored project to study the probable genetic causes of polymicrogyria (PMG), the group of disorders that includes Cogenital Bilateral Perisylvian Syndrome. The three of us provided DNA samples for this project while we were in Chicago. We are all about the science.

At this point, my interest in Faith's story became more immediate. In a very real sense, she's family. Faith's monster and Schuyler's monster are kissing cousins, after all. I went to do some reading on Periventricular Heterotopia, which like CBPS is an abnormality that occurs in the brain as it develops during pregnancy. It can even develop in association with other abnormalities like polymicrogyria.

Aside from some learning disabilities, it looks like patients with Periventricular Heterotopia don't usually suffer from other neurological disorders like Schuyler does. But the thing that they DO face is the thing that is probably still lurking in Schuyler's future.

Seizures. And bad ones. In Faith's case, they are extreme and life-threatening. The site doesn't make this clear, but this little girl has already flat-lined from her seizures on at least one occasion. She has my deepest sympathies, because her present life and struggle taps into my worst fears for Schuyler's future.

There's been a lot of talk about fear around here lately. And I'll admit, the anonymous threat that was posted here gave me pause. So did something else, something I didn't mention because I didn't want to tell Julie about it immediately. I finally told her tonight, and so now I can mention it here. A few hours after that threat was posted, I received a phone call at work, from what sounded like a woman trying to sound like a man. It was supposed to sound scary, and perhaps it would have if not for one tiny detail.

"See how easy it was to find you? It'll be just as easy to find SHOOLER."

If you're trying to be menacing, you might start by getting your target's name right.

I'm not afraid of anonymous callers or the Jane Book Club or anyone else capable of using Google or directory assistance.

I'm afraid of seizures.

I'm afraid of the monster that kills some kids with CBPS, because that's the thing, along with choking and breathing issues, that does it. Their parents have written to me, they've sent the most heartbreaking emails you can possibly imagine. Not many kids with seizures die from them, but if you're a parent, ask yourself how comforting that would be. I remember when Dr. Dobyns told us that only a few of his PMG patients have died from their seizures. That's great, Dr. Sunny Side. Thanks.

Schuyler does not suffer from seizures. She has problems with fine motor control, both in her hands and in her mouth, and some mild swallowing issues that she compensates for with a lot of success. She suffers from a very significant developmental delay, but it is unclear whether that is a result of some cognitive defect or her communication issues. And those issues are extreme; she can't speak, and she hasn't developed verbally in any significant way in probably three years. She is (and almost certainly will always be) mute, and Dr. Dobyns said she would be a clumsy girl for the rest of her life, but she doesn't have seizures.

Not yet. But two facts loom over her like the Sword of Damocles. The first fact: Dr. Dobyns estimated her chances of developing seizures at over 80%, probably between the ages of six and ten. The second fact: based on his examination of her MRI, Dobyns estimated that between sixty and seventy-five percent of Schuyler's brain is profoundly malformed. When he met Schuyler for the first time, he was surprised to see that not only was she not confined to a wheelchair, but was completely ambulatory and not visibly impaired in her physical development. In my book, I quote him:

"Now, this just illustrates exactly how little we still know about the human brain. From examining this MRI, I can tell you that I certainly didn't expect to walk in the room and find a little girl running around and playing like a neurotypical child. I wouldn't expect Schuyler to be functioning at a significant level mentally or physically, but there she is. She looks and behaves like any other kiddo, and she's obviously functioning cognitively at a reasonable level. Those affected areas of her brain are working, they’re doing something. We just have no idea how, or what her brain is capable of."

So when you wonder what we're afraid of, that's simple. We're not afraid of internet bullies hiding behind anonymity and private forums. We're afraid of Schuyler's mysterious, medically inexplicable brain and what it has in store for her. We're not afraid of someone stalking Schuyler because in a very real way, she is already being stalked.

We're afraid of Schuyler's monster.

One more parenting revelation

When you as an alleged adult have a very small injury and are at home, it is entirely possible that you will end up going to work wearing a Dora the Explorer Band-Aid.

Silent but Deadly (repost)

Early riser
Originally uploaded by Citizen Rob.

(Reposted from last Friday. Let's try this again.)

I think it's safe to say that when she showed up at Summer Camp in time to see Schuyler sitting on top of another, much larger kid while choking him and ignoring the teenaged counselors as they told her to, you know, like, stop and stuff, Julie had some concerns.

I'm pretty convinced that it was a case of wrestling and horsing around that got out of hand, but still. That's a disturbing thing to hear about your sweet princess, your pretty ninja. Choking a kid? What the fuck? And why was she ignoring the staff? When she finally was pulled off the other kid, she then ran off and refused to cooperate.

The thing is, this is the sort of stuff that the rest of you deal with all the time. Little kids are barbarians. They are figuring out where the lines are, what they are allowed to do as primal being and what rules govern them as humans. Without those rules and that guidance, you get Lord of the Flies. So I understand that it's an important part of every kid's normal development, and I'm trying to stay cool about it.

With Schuyler, there is the added burden of finding a way for her to express her anger and, as I've mentioned before, to tell her side of the story. I know she's been bullied by neurotypical kids who take advantage of her lack of a voice to spin their own versions of "okay, so here's how it went down". I've watched it happen before, and not just with strangers.

It's bad enough that she can only give her side of the story in simple verbal expressions, sign language and miming the action. But when she is upset and tries to use her Big Box of Words, Schuyler freezes up. She becomes daunted and punches buttons helplessly before finally giving up in frustration. She's a little like Melville's stammering Billy Budd, who is so upset at false accusations of mutiny that he is unable to answer with his voice and instead strikes and kills his accuser, and therefore himself.

I keep telling myself that Schuyler is better off in this environment, that for all the dangers and all the obstacles, she will benefit from making her way in that grand rough neurotypical world for a few short summer months before returning to the shelter of her Box Class.

I'll let you know when I actually convince myself.

Too Far

The Eruption, by Luke Chueh
Originally uploaded by Citizen Rob.

Okay, so if you didn't see it, there was an ugly incident in the comments area of my last (and now deleted) entry. A bunch of people from a private forum showed up and piled on, and I approved all of them in the interest of trying to be fair (and interesting, to be honest). Some of them were sort of nasty, calling Schuyler a brat and bully, but whatever. I know Schuyler, and enough of you have met her or know her and know she's neither, so it was more amusing than anything else. Hateful people have their own internal monologue, and God bless 'em for it. I hope the sky in their world is a pretty color.

But then it happened.

Rob, I just want you to know that if I ever see your kid in public (and since you've nicely told everyone where you live, that shouldn't be too hard to arrange), I'm not going to wait for her to attack. I'm going to beat the shit out of her right then and there and see if she learns a lesson.

And that was it. That was the line. That was the first and last time anyone will ever threaten Schuyler on this website. I'm not sure how we're going to address this, since my presence on the web is part of what is being sold to editors by my agent. Going away completely feels like an overreaction.

But things will have to be different. For now, I'm going to go through and delete all the references to where we live, and I'm hiding (and turning off) the comments. That's obviously not going to stop anyone who's already been reading and preparing to beat the shit out of a six year-old, but it's a start. Today wouldn't have happened if not for the mob mentality and the piling on. I won't provide the platform for that kind of thing.

As soon as I saw the comment, I called Julie on the very remote chance that this threat was more than just someone trying to be an ass and going too far, which is honestly what I think it was. I needed her to be a little extra aware and vigilant.

From her reaction, I can tell whoever it was that left that comment, as well as your hateful friends, that you can be certain of one thing.

If you do actually try to harm our daughter, it will end tragically, and not for Schuyler or for us.

Julie and I can't be any more clear than that.

I'll be back when I know what to do here.

Breakfast with Rob

Dark Thoughts, by Luke Chueh
Originally uploaded by Citizen Rob.

Good morning, kids! Say, what's for breakfast? Here's what's on the menu today:

Metformin ER. (generic form of Glucophage XR) This is the primary drug addressing high blood sugar for type 2 diabetics. If you know a type 2 diabetic, they are probably taking some form of this, unless they reached their "fuck THIS" stage and gave it up. Each pill is huge; they come in a bottle roughly the size and shape of a Red Bull can.
Potential Side Effects: Good lord. One 500mg pill did nothing to or for me, two made me vaguely nauseous and fatigued. It was when I went up to three that the real fun began. Extreme nausea, diarrhea cha cha cha, and a fun thing where you burp a lot and the burps taste like you have been eating a skunk, ass first. I finally had enough and stopped taking them while I was working over the weekend, and guess what happened? I INSTANTLY felt 100% better.

Actos. This is another drug for high blood sugar. Starting today, I'm taking one of these a day instead of that third Metformin.
Potential Side Effects: A whole new set of possibilities! Shakiness, dizziness, sweating, confusion (beyond my usual level, I assume), nervousness or irritability, mood swings, headache, facial numbness, pale skin, sudden hunger, and my favorite, seizures! Wouldn't it be ironic if I got seizures before Schuyler? I went and read what other patients said about Actos, and a lot of them complain about weight gain. Which is funny, since two of the other drugs I'm taking are supposed to cause weight loss. A war is shaping up inside the Rob!

Lisinopril. Okay, so this is the thing I didn't want to talk about last time. This drug is normally used to address high blood pressure, but my BP is normal. In my case, it is being prescribed to arrest and hopefully reverse early signs of kidney failure. Yeah, that's the thing I didn't and don't so much want to talk about.
Potential Side Effects: Dizziness, headache, fatigue, dry cough, muscle cramps, numbness, nausea and diarrhea (well, of course), and a rash (delightful!).

Phentermine. This is my supermodel diet pill.
Potential Side Effects: Restlessness, nervousness, anxiety, headache, insomnia, cha cha cha, and extreme sexiness! Oh, and it is habit forming.

Cinnamon Bark. This is my new age natural supplement to address high blood sugar. No idea if it works.
Potential Side Effects: No idea. Cinnamon taste will make me a more attractive target for cannibals and vampires. Fucking vampires, man. As if life wasn't hard enough already.

Banana. A tasty treat.
Potential Side Effects: Improper disposal of the peel may result in comical injury.

I thought drugs were supposed to be fun.

The Prisoner, by Luke Chueh
Originally uploaded by Citizen Rob.

I wonder if I'll get fired from my diabetes blog for what must surely be the very worst blog post ever. It's a very real possibility.

I know I was pretty upbeat last time about my health, but the past two days haven't gone so well. One of the things that Dr. Hottie did was increase my daily dosage of Metformin (the poor man's Glucophage) by another 500mg, and that, possibly along with the Supermodel Diet Pills, has caused my body to reject the very idea of human life in a rather dramatic way. I won't go into a great amount of detail except to say that I'm glad our apartment has two toilets. You figure it out.

I got a call today from Dr. Hottie's office with results from my last round of tests, and it was basically one of those "I've got some bad news and I've got some good news" calls.

Oo, that reminds me of an old favorite joke!

A man has been having serious dental problems, so he goes to see an oral surgeon. The surgeon examines his mouth and then goes off to analyze the results. After a while, he comes back into the office and sits down with his patient. His face is somber.

"Well," he says, "I have some bad news, and then I've got some REALLY bad news. But then I have some good news."

"The bad news," he continues, "is that a rare but serious infection has attacked your teeth. I'm afraid we're going to have to pull every single one of them out."

"Oh my God, that's terrible!" the man cries. "I can't imagine what the REALLY bad news could be!"

"Oh, it's bad," the doctor says. "It turns out that the infection has also moved into your gums. We're going to have to actually go in and file your gums down, all the way to the bone."

By now the man is in tears. "That's horrible," he says. "What good news could you possibly have?"

The doctor looks up at him. "Did you see that good looking receptionist at the front desk when you came in?"

"Yeah?" says the man.

"Well, I'm banging her."

Ha! Anyway.

So the good news is that my blood sugar is actually coming down, slowly but steadily. It's still too high, but not crazy high. More wacky high now.

The bad news, well, just this once I'm going to keep it to myself for a while. I know it sucks to mention something on a blog and then be all "But I can't tell you, tee hee hee!", but we're still processing it and sorting out what it means and what we'll have to do about it. It was unexpected, I'll say that much.

I'm embarking on a crazy weekend where I'm shooting two weddings in two different towns, neither of them local or even all that close, and also working a bridal expo. That's a lot of pretending to be a nice person. This is the first time I've ever been concerned about actually making it through a gig, but I think I'll be okay. The truth is, I feel best when I'm shooting, with all the moving around and thinking on my feet. It's when I'm sitting on the couch watching Battlestar Galactica reruns all day like today that I feel bad.

You know, I'm standing by my assertion that the Diabetes Notes post I mentioned earlier is the worst blog post ever, but now that I look back on it, I think this one maybe runs a close second.

Beedies update

www.toothpastefordinner.com, originally uploaded by Citizen Rob.

I had my monthly visit to Dr. Hottie today, and it went fairly well. I was all prepared to find out that I am even fatter and lazier than I was last month, but I was surprised to learn that I've actually lost three pounds in the past few weeks. I'm still on the wrong side of where I was the day I was diagnosed and was told that I should lose twenty pounds, but considering that I thought the news would be worse, I was happy to hear that I am at the very least not turning into a chud monster at quite the rate I thought I was.

It's hard, losing weight when you've led a free and easy, chocolate-coated, deep-fried existence. I'm proud of some of the changes I've made. I don't find it all that hard to stay away from sugar stuff (although yeah, I miss me some cookies), and what cravings I do have are easily enough satisfied with some items made with Splenda, things like Sugar Free Jell-o Pudding (but not the Jell-o itself, oddly enough) and some fakey-fake chocolate ice cream by Breyers. There are a number of diet soft drinks I can have, but honestly, I mainly end up drinking lots of Propel.

The thing that's hard to fight is carbs. And honestly, I snack more than I should, and I exercise less than I should, and so I lose less weight than I should. This last twenty (okay, shut up, twenty-five now) pounds is going to be a challenge. It's funny, too, because I have lost about, and this is not a lie, seventy pounds since college. Man, I was a treat for the eyes back then.

To help with these last remnants of Jabba the Huttliness, my doctor prescribed Phentermine, a diet pill that I thought was all controversial until I actually started reading about it. Turns out Phentermine was the "phen" part of Fen-phen, and it was the other part, the Fenfluramine, that was messing people up. Phentermine doesn't appear to be a big deal, although it is very tightly controlled and is not intended for the 125-pound purging sorority girl so much as people with a medical reason to lose weight, like the morbidly obese and, well, me.

As for side effects, Phentermine can affect your blood pressure, but my BP is completely, weirdly normal. According to Dr. Hottie and the stuff I'm reading, it also can make you jumpy, and after one short afternoon on it, all I can say is "yep".

So between the Phentermine and a newly invigorated exercise program (I am Bikezilla these days), be ready for the hot new Rob.

Slim. Sexy. And jumpy as fuck.

Update to Left Behind

Okay, maybe not so much.

When it comes to contemporary politics and particularly election shenanigans, it's impossible to know who to believe or where the truth lies.

Still, it's a relief to read that perhaps our election system isn't completely rotten.

I'm slightly more comfortable with the idea of a foolish electorate.

Left Behind

I haven't written about politics in a long time, which some of you might think is a good thing. Furthermore, I doubt I'm going to start again any time soon. My politics haven't necessarily changed, I'm still the big liberal I always was. In fact, that's part of the problem. It's been a long time since I felt like the Democratic Party showed much interest in upholding any of its traditional progressive values, and I'm not sure I see things getting better any time soon. Lewis Black described the Republicans as the party of Bad Ideas, and the Democrats as the party of No Ideas.

And while I agreed that the 2000 election was ultimately decided by the Supreme Court rather than the will of the people, it was also clear to me and a lot of progressives that if not for the failings of the Democratic Party and Al Gore to capitalize on the peace and prosperity of the Clinton Administration, the election would have not only gone the other way, but wouldn't have even been all that close.

As for 2004? Another weak candidate who couldn't beat the worst president since the discovery of electricity, it seemed. It didn't make much sense, given how poorly George W. Bush had performed and how badly the war was going, but whatever. No one ever failed in business or politics by banking on the ridiculousness of the American public.

Well, turns out, the problem with the American voting public might not have been our decision to re-elect an apocalyptically bad president after all.

The problem might just have been our trust in the system and the assumption that our votes actually mattered.

Is this how the fall of Rome began? And when it happened, did the Romans actually give a damn?

A Different Kind of Normal, Revisited

Locked, by Luke Chueh
Originally uploaded by Citizen Rob.

A couple of months ago, I wrote an entry about a magazine article concerning a special needs family and how they deal with the different challenges that come up for broken kids and their own particular monsters. Well, I'm happy to report that the first part of the series A Different Kind of Normal is now available to read online at Wondertime magazine's site. I hope you'll go read it, because it really is a thought-provoking article that might give you a slightly different perspective on some of the things that kids like Jimmy and Schuyler face.

I hear from a lot of parents and readers who talk about how we've become an inspiration for them in some way, and I am always touched by that, even when I don't feel like I deserve it. Well, the parents in the article, Michelle and Jim Foard, have become heroes to me. They are fierce advocates for their son, and they're not ones to sugarcoat the challenges he faces. When something's hard, they say it's hard.

You know how I feel about the "glass half full", "he's my special little guy", "handicapable!" Holland crowd. If that sort of sunny-side approach is what they need, then I certainly think they need to embrace what works for them. But I don't have much use for it, and I certainly don't think broken kids need it, either.

Michelle and Jim understand something that I think most people don't get, and that includes a lot of parents, even some with special needs kids. They understand that their son has limitations that have to be respected, but they also seem to understand that within those limits, their greatest gift to their son is the expectation that he will one day be able to fit into the world.

The title of the article comes from something Michelle said, in the last paragraph:

Michelle and Jim have risen to the profound occasion of raising their son. "We want to give Jimmy every possible chance to excel," says Jim. "We love him. He's perfect. But he's going to have some very serious issues we're going to have to deal with for the rest of his life." It's a future they've learned to make peace with. "It's life now," explains Jim. "It's part of everything we do." Michelle searches for another way to explain what it's like to be Jimmy's parents. Ultimately, you learn to embrace "a different kind of perfect," she says, and "a different kind of normal."

When I first read the article, I wrote to the author, Charlotte Meryman, to tell her how much I enjoyed it. We exchanged a few emails and had a pleasant conversation, and while I don't remember telling her about my site, I either must have said something or she found it on her own and shared it, because last week, I received an email from none other than Michelle Foard herself.

She expressed some of the same things I've felt, about how "usettling" it is to have all this personal information out there in the world about her family and how hard it is to receive unpleasant emails from strangers. Until now, she was unfamiliar with the whole blogging world, so all of the faceless, anonymous bile of the internet is new for her.

I hope she won't mind if I quote her email, but she said something that made me proud, both of what I'd written and of what you people said in response, and I thought you ought to read it:

So after reading a barrage of angry emails and stupid remarks, it was nice to see that someone out there really got the gist of what the article was about and could relate to our situation. So thank you and your other "bloggers?" for reaffirming that going public and being completely honest wasn't a crazy stupid mistake.

So there you go. Good stuff happens here sometimes.

Well, that was a fun ride.

Holy crap
Originally uploaded by Citizen Rob.

You can say whatever you like about me (and I'm sure you already feel free to do so), but one thing is undeniable.

When I have a blowout, I do not screw around.

Phone conversation with Schuyler, just now.

Wild flowers
Originally uploaded by Citizen Rob.

Me: Did you have a good time today?

Her: Yeah!

Me: Were you a good girl?

Her: Yeah.

Me: Did you play?

Her: Yeah.

Me: Did you go swimming?

Her: Yeah.

Me: Did you eat bugs?

Her: (with an exasperated sigh) Noooooo...

Island

Schuyler in B&W
Originally uploaded by Citizen Rob.

Schuyler starts her summer camp program today.

I hate turning her over to other people. A while back, I wrote about my secret dream, which was for us all to move to an island somewhere and be together without all the fears and pitfalls of a cruel society. It wasn't a healthy dream, I admitted as such at the time. On days like today, however, when Schuyler walks into another new situation armed only with her tough girl disposition and her Big Box of Words, my stomach ties in tight knots with all the old fears. That island sounded pretty good to me this morning.

A friend of mine recently found out that the teachers at her five year-old daughter's private school were singling out her kid for special treatment. It's not my kid, so I won't get into the specifics, but let's just say that I was a little surprised to learn that these teachers were adopting the Lord of the Flies educational model. A shame circle? WTF?

The details aren't important. What is relevant about this story is that the teachers apparently counted on the kids to keep the situation a secret, and for a long time, they succeeded through the use of that time-honored teaching tool, embarrassment. My friend didn't find out from her daughter, who was humiliated by the experience and was keeping it to herself, but from other parents where were hearing bits and pieces of the story from their kids.

The reason this story upset me so much, aside from the fact that in general, I'm not in favor of little kids being humiliated, is that this happened to a little girl who can speak. This happened to a little girl who loves to talk. I think you can see where this is going.

We're in a delicate place with Schuyler. A year ago, she was just beginning to use her device and was still spending all her time in a heavily (if incompetently) supervised special needs program. In a year or two from now, she will hopefully be proficient enough with her device that she will be able to accurately communicate to us if things go wrong and no one's around to stop it.

But right now, it's hard. Schuyler's spending more and more time in mainstream programs, and this summer, she'll be spending the better part of every day surrounded by neuro-typical kids. Neuro-typical North Dallas kids, many of whom will presumedly grow into North Dallas teenagers like the ones who recently had drug-infused muffins delivered to a local rival school's teachers and made a bunch of them sick.

She's still learning how to use her device, and communicating detailed incidents is still very difficult for her. We depend on her teachers and her after-school program staff to tell us when something happens, but we can all remember how often grown-ups got it wrong, and how important it was for someone to take us seriously when we needed to tell our side of the story.

Schuyler needs to be able to tell her side.

Julie came home from dropping Schuyler off this morning, and she was in tears. Nothing bad happened; Schuyler was nervous and hesitant at first, but then she saw some kids she recognized and was off in a flash. This is summer camp; she'll be outside almost the whole time, playing and swimming and getting dirty and eating bugs and generally being a kid during the summertime. Today wasn't a bad start at all.

But Julie was scared, like I'm scared. She'd like the island, too, but she sees better than I do that Schuyler would hate the island. Schuyer would swim to the next island when no one was looking and go play with the headhunter kids.

As much as I turn into Barbarian Dad when the world pushes Schuyler around, Julie is just as sensitive. But more than that, she's dedicated to the idea, as I am, that Schuyler's world shouldn't be so fucked up. The monster shouldn't be calling as many of the shots as it still is.

"I just want her to have fun like any other kid," Julie said through her tears. "I want her to be able to go swim and play and have fun like I always did when I was a little girl. I hate her stupid device sometimes. I don't want her to be different."

When things are going badly for Schuyler, it's hard to be her parent. But the thing is, sometimes it's hard when nothing's wrong, too.

Memorial Day 2006

Nevinson, "Paths of Glory"
Originally uploaded by Citizen Rob.

For 14 hours yesterday I was at work -- teaching Christ to lift his cross by numbers, and how to adjust his crown; and not to imagine he thirst till after the last halt; I attended his Supper to see that there were no complaints; and inspected his feet to see that they should be worthy of the nails. I see to it that he is dumb and stands to attention before his accusers. With a piece of silver I buy him every day, and with maps I make him familiar with the topography of Golgotha.

Wilfred Owen, 1918 letter to Osbert Stilwell

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Allow the President to invade a neighboring nation, whenever he shall deem it necessary to repel an invasion, and you allow him to do so, whenever he may choose to say he deems it necessary for such a purpose -- and you allow him to make war at pleasure. If today, he should choose to say he thinks it necessary to invade Canada, to prevent the British from invading us, how could you stop him? You may say to him, "I see no probability of the British invading us' but he will say to you, 'Be silent; I see it, if you don't."

Abraham Lincoln

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What difference does it make to the dead, the orphans and the homeless, whether the mad destruction is wrought under the name of totalitarianism or the holy name of liberty or democracy?

Mahatma Gandhi (1869 - 1948), "Non-Violence in Peace and War"

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O Lord our God, help us tear their soldiers to bloody shreds with our shells; help us to cover their smiling fields with the pale forms of their patriot dead; help us to drown the thunder of the guns with the shrieks of their wounded, writhing in pain; help us to lay waste their humble homes with a hurricane of fire; help us to wring the hearts of their unoffending widows with unavailing grief; help us to turn them out roofless with their little children to wander unfriended the wastes of their desolated land in rags and hunger and thirst, sports of the sun flames of summer and the icy winds of winter, broken in spirit, worn with travail, imploring Thee for the refuge of the grave and denied it.

Mark Twain, "The War Prayer"

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Only the dead have seen the end of war

Plato

BBoW Report

BBoW
Originally uploaded by Citizen Rob.

(A lot of people have been curious about the Big Box of Words, so maybe I'll make this a regular feature.)

Today at lunch, Schuyler grasped, using her device, two concepts that I hadn't really thought about but which I'd suspect are tricky for little kids. She spelled all these things out on the BBoW, and she pointed to Julie and me and herself to indicate who she was talking about.

So here's what Schuyler told us on her device today.

1) Her name is not just Schuyler, but Schuyler Hudson. She understands that both names refer to herself, and she taught herself how to spell it by looking at her medical alert dogtags.

2) My name is not just Daddy, but also Rob, and Mommy is Julie, too. I told her she could call us whatever she wanted (a position I've always taken, liberal hippie freakshow that I am), but she's going to stick with Mommy and Daddy for now.

She had her Barbie mermaid with her, and when we asked her what the doll's name was, she looked on the toy itself for clues. She found one and started typing happily on the BBoW, relieved to dodge the pressure of coming up with something by herself.

As a result, apparently her Barbie's name is Mattel. Nice to meet you.