April 6, 2011

Pretend and not pretend


R & S
Originally uploaded by Citizen Rob
The past seven days have been... well, up and down.

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

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

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

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

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

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

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

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

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

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


7 comments:

Margaret said...

when you said Schuyler refers to herself as 'Drummer Girl', it made me think of the movie Scott Pilgrim Vs the World. The 2 female leads might be characters that Schuyler connects with as she enters the teen years. I don't know if the subject matter is what you let her watch, but from all you've said of your lovely daughter, I bet she would feel kinship with the 2 female leads (one of whom is a drummer, the other of whom dyes her hair a rainbow of colors)

Sherry said...

If you can get your hands on a copy of Stewart Copeland’s “The Rythmatist”, it’s mind-blowing! Crazy awesome drummer, that guy is. http://youtu.be/NxWSykgLAP4
Would love to hear Schuyler’s opinion.

Julie said...

I love how Schuyler has named and is starting to understand "her monster". Maybe the very thing that has caused people to hurl so much anger your way is what will get her through. Before she was old enough for you to know it would work, you gave her the metaphor. You went with your strength (writing) and it provided her with what she needed. More evidence in the "parent knows best" column.

Julia O'C said...

I think it's interesting that she's not having accidents at night, just during the day. Are the accidents only happening at school? You don't need to answer - I guess I'm just hoping that this has that has nothing to do with seizures (or anything serious for that matter). Something along the lines of, "It's a phase. Just wait it out. Everything is going to be fine."

Yeah. That would be good.

Corinn said...

Randomly, is she into Monster High? It's a doll line, yes, but hey--the dolls/characters are all children of famous movie monsters; sounds right up Schuyler's alley!

Sadly, there's no descendants of King Kong. Still, zombies and mummies and vampires and werewolves and monsters of the deep, oh my!

Though be warned that the theme song is something of an earworm. XD Especially the line, "Monsters, monsters, yes we are!"

(Disclaimer: Mattel has no idea that I exist, so this has not been a paid advertisement. ^_^)

Saskia said...

If you want real drummer girls, watch this:

http://www.youtube.com/watch?v=aMu9d7P7kw4

also this: http://www.slagerijvankampen.nl/

The name is a dutch pun, because Slagerij means butcher, but can also mean "place of beats"
I love their drums and the energy they project.

Miellyn (véry long time reader/lurker)

Unknown said...

The drummer girl comment resonated with me too. I love a song by Danielle Cotton called "Bang my drum" because it reminds me of my 11 year olds ability to throw back at the world the things that would beat me down, but not her. The lyrics of the song and the feel of the music really capture that spirit that our daughters share.