Portrait of a Real Girl

My latest post at Support for Special Needs discusses a little exchange I had on Twitter last week, ostensibly about Schuyler's school photo. The conversation was a doozy, and mostly ended in kookery, which is hardly a surprise at this point.

Still, it brought up a larger point, about how kids like Schuyler are typically a lot more complex and self-determined than some people give them credit for. They are, dare I say it, actual people?

NOTE: This is NOT her school photo. Which is kind of too bad.

"Dear Santa..."

Christmas Eve, 2011

Christmas Eve, 2011

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

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

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

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

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

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

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

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

From the epilepsy.com site:

How long do they last?

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

Tell me more

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

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

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

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

Some complex partial seizures turn into secondarily generalized seizures.

What else could it be?

Complex partial seizures sometimes resemble daydreaming or absence seizures.

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

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

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

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

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

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

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

---

The Oxen 

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

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

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

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

-- Thomas Hardy

Fuzzy Jedi

Dinner and a monster movie

Medusa

Medusa was 100% her idea.

"You are the music while the music lasts."

Monster trap

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

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

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

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


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

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

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


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

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

Wired

Escape in chalk

Tomorrow, we see Schuyler's neurologist.

Today, sidewalk chalk.

Julie drew tulips.

I drew a grass monster.

Quiet Girl

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

-- Langston Hughes

A moment at play

Scenes from a birthday

Tree Trimmage

Purple snowflake

Some things are hard to see when you are standing close to them. The passage of time masks growth and allows you to hold a tiny little baby and barely notice as she grows into an actual large human person thing.

And then you receive her fourth grade school portrait, taken by someone else at a place you never saw, on a day like any other when you put your baby girl on a bus and sent her into a world that sees her as a five foot tall preteen girl, You see the photo, and the person looking back at you is both the most familiar being in the world, and a mysterious stranger.

Schuyler is ten years old. I knew that, of course. But when I look at this photo of a girl who is not a baby and isn't even going to be a child much longer, the reality lands on me in a way that I guess it hadn't before.

In most ways that's no different from any father who has a hard time letting go of his little girl, I suppose. It's a cliche, I know. It's not one I particularly enjoy embodying, mostly because in matters of Schuyler and her well-being, I pride myself on being a fierce advocate for her. It's important, that position, the most important in my life, the one that really matters. I feel like it requires clarity and understanding and focus. Being all mushy-headed and "Aw, my widdle baby is all grown up, waah" feels like an idiotic, cartoonish distraction. I have no desire to be that familiar buffoon dad from any of a hundred forgettable sitcoms. And none of us really has the time for it, either.

As with all things Schuyler, however, it's not that simple. Last summer, I spoke briefly with a doctor and researcher who is familiar with both Schuyler and her monster; indeed, he is one of the world's top experts on disorders like hers. He pointed out how well Schuyler is doing and how unusual her manifestation of polymicrogyria really is. On one hand, her speech is affected, profoundly so. At the same time, she's completely ambulatory, can write and eat with only minor impediments, and appears to be cognitively high-functioning as well. She walks through the world like a perfectly normal little girl her age, and yet she's not like any other.

"I've never seen PMG manifest itself with quite such a narrow focus," he said. "Schuyler is probably unique in the whole world."

I knew that, I've always known that on some level, but to hear it put like that made it even more real. Every kid is different, I know; every child is a snowflake. But as far as that goes, Schuyler is wholly unique, like a purple snowflake.

Being Schuyler's father, then, isn't a job that always corresponds to precedence. She's a ten year-old girl who wears a bra and wants to experiment with makeup and dances around the living room to Lady Gaga. She argues with her parents; she fake pouts when she wants something and does it for real when she doesn't get it. She's like your kid in a lot of ways.

But Schuyler is also a ten year-old girl who has never had a conversation on the telephone with anyone other than her parents; actually, I don't think she's ever dialed a phone in her life. When she writes sentences using her spelling words for school, she composes pieces that work grammatically and convey meaning but also demonstrate that her understanding of language and the world is abstract and different, developed as it has in an internal world mostly her own. Schuyler has never whispered a secret in another little girl's ear. Indeed, she doesn't spend much time with other kids her age outside of school, which breaks my heart. She lives a sheltered life, of necessity, and I can feel how that's beginning to stifle her a little. But the ways out of that are complicated, and they require a level of peer acceptance that I simply can't control.

Schuyler is growing up, and she's doing so in a world that isn't completely sure what to do with her. It scares me, in part for reasons that are just those of any father in the world, but also for some that are literally mine and mine alone. In that respect, I'm a bit of a purple snowflake, too.

A Fat

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

Xmas 2009: Surprise Snow, Purple Guitars and Flying Monsters

Santa's detritus

Christmas morning hair

White Christmas, if you get up before it melts off. (Which it did.)

Christmas sunrise

It's just not a traditional Christmas without a flying monster.

The guitar that she's been asking for all year. We're afraid that her polymicrogyria will make it hard and frustrating for her little fingers, but in the end, we decided that at a time of hope and renewal, why not let her give it a try?

-----

I hope that no matter what the reason for YOUR season might be, you have the very best possible holiday and a new year full of promise and hope, of dreams come true and all new dreams after that.

Schuyler, at ten

"It is rare that one can see in a little boy the promise of a man, but one can almost always see in a little girl the threat of a woman."

-- Alexandre Dumas

Flygirl Realized

On Halloween weekend, we had an amazing experience, one that we're unlikely to forget any time soon. Almost a week and a half later, we're all still talking about it.

And the book festival was fun, too.

A few weeks ago, when they saw that Schuyler had chosen her hero, Amelia Earhart, for her Halloween costume, Austin friends Jim and Pat Howard emailed me with an amazing offer for Schuyler's weekend in town for the Texas Book Festival, assuming we had time. When I read the offer, I knew immediately that we'd make the time.

I'm not sure how long I've known Jim and Pat, although I can remember Jim giving me a hard time about buying my previous car, the admittedly ridiculous Beelzebug, and that was over ten years ago. Jim and I couldn't be further apart in our politics, but we've never let that poison our friendship. As a result, I think that even when we disagree, we do actually hear each other occasionally. We finally met face to face a number of years ago, I believe when I returned to Texas from my Yankee exile, and Julie and I have counted the Howards as constant supporters of Schuyler and this family for as along as I can remember. I was delighted by their offer, but I can't say I was surprised.

So it was that on a beautiful, clear Sunday morning a week and a half ago, Julie and Schuyler and I found ourselves at the airport in Austin, walking out to see what was easily the most beautiful aircraft I have ever seen.


The jet is a Dassault Mystere Falcon 900, built in France and considered to be among the finest, if not the finest, civilian aircraft that a gigantic box of money can buy. (According to the Dassault website, there are only 160 of them in the world.)

The pilot of the Falcon is Kyle Kimmell, and from the first moment we met him, he impressed us with his kindness towards Schuyler, his patience with her and his appreciation of her enthusiasm. I can't even begin to express how generous it was for him and for the plane's owner to have prepped and made available for her to see it like this. The Falcon was sleek and perfect on the outside, and indescribably plush in the cabin, but Schuyler was only interested in the cockpit. Kyle explained what all the controls did, he didn't flinch when she grabbed the headset and put it on, and he even let her start up the engines. (I suspect she burned about a month of my salary's worth of fuel while we were sitting there.) He was more than patient. Kyle seemed genuinely happy to show this amazing aircraft to Schuyler, and he thanked us for bringing her more than once.

And really, getting to go on board the Falcon and sit in the cockpit and fire up the plane's systems, all of that would have been enough to make Schuyler's whole year.

But we were just getting started.

---

Jim is a member and past president of the Chandelle Flying Club in Austin, the group that owns the 1978 Piper PA-28 Warrior that he took us up in. Like her hero Amelia Earhart, Schuyler got to take to the air.

Owing to a lack of space and Julie's intense and unshakable desire not to leave the ground, the flight consisted of Jim and Schuyler in the front and me sitting behind them. Jim walked Schuyler through the pre-flight check and showed her exactly what he was doing, and then we were off.

Schuyler can be a squirrelly kid when she gets excited, and we were worried that she might get a little flighty, no pun intended. But throughout the whole experience, from the moment we climbed into the plane on, she was suddenly very focused, listening carefully to Jim's instructions and becoming very quiet when he needed to communicate with the control tower. She was a perfect little passenger as the plane took off and as Jim climbed to about 3000 feet.

And then she became a perfect little pilot.

I don't think she believed that she was actually flying the plane until Jim took his hands off the controls altogether. He showed her the basics of flight control and then, for the bulk of the rest of the flight (excluding the landing, of course), Schuyler piloted the plane. Jim would pick landmarks on the ground, such as smoke from a fire or the glint of the sun on a lake, and Schuyler would take us there, circling the target once we arrived. Jim emailed me afterwards to let me know that she had in fact been flying the plane for most of the flight. "I think she pretty much figured out how to control the roll axis," he wrote. "When I helped it was usually with the pitch axis. As is typical for new flyers she started with a death grip on the control yoke, but unlike some adults I've flown with I was able to persuade her to relax and hold the yoke more gently, which makes flying much easier."


It's a funny thing about Schuyler. She's got this disability, and it throws obstacles in her path every day. School is challenging for her and will only become more so. The social life of a preteen girl isn't going to be easy or gentle on her, either, particularly not in a town like Plano. Her future is harder than I let on sometimes, perhaps because I want her story to be nothing but successes, and I suppose sometimes I don't talk much about the bumps that she hits, or the ones still waiting in the future for her.

But Schuyler is tenacious, and while she loved flying and is still talking about it (and answering happily to "Flygirl"), I don't think it occurs to her that she's unusual for getting to go up in an airplane, to actually take control of an aircraft and fly it. For Schuyler, life seems to be a series of experiences, of new people to meet while she signs books with her face on the cover, to attend a book festival and listen as her story is discussed by a panel of published authors, to see herself or her father on television, or to take to the air. I've gotten a lot of things wrong with her over the years; I've blown it many times as her father. But by introducing her to a world with people like Jim and Pat Howard and Kyle Kimmell in it, and by trying my very best to accommodate unique opportunities for her, I like to think that sometimes I get it right, even if that just means getting out of her way. I'm forty-one years old and I've never flown an airplane. I like to think that Schuyler's life experiences will intensely outshine my own. In all the significant ways, they already have.

All of this is to say that I am immensely proud of Schuyler, more than I have words for.

Jim described Schuyler as "a real ball of fire, with the heart of a lioness". I felt bad for him in one moment, when he took the controls to show Schuyler exactly how steeply the plane could turn. I'm not sure what he thought he saw when he glanced over at her, but he seemed to think that perhaps he'd pushed it too far, that the daunting angle of the plane had frightened or bothered Schuyler. But midway through the second turn, I tapped her on the shoulder and asked her if she was having fun.

I think the photo I snapped when she looked back at me says it all:

---

Thanks to pilots Jim Howard and Kyle Kimmell.

Dads on an Uncertain Mission

October 31, 2009 | 2009 Texas Book Festival | Austin TX
Saving Your Children: Dads on an Uncertain Mission

(l-r) Antonio Ruiz-Camacho (moderator), Rupert Isaacson, Michael Greenberg, Robert Rummel-Hudson

With Michael Greenberg, author of Hurry Down Sunshine

With Rupert Isaacson, author of The Horse Boy