February 23, 2007
They had puppets, and she fell in love. Which is how we ended up with a monster. Schuyler's new monster.
We call him Martin.
There's something I've wanted to try with Schuyler for a while, an idea I had during a box class parents' meeting a few months ago. Schuyler's condition hasn't affected her in some of the more serious ways that other kids suffer from, like seizures and serious dysphagia. (When I say "suffer", I'm not kidding; the polymicrogyria group I belong to is a regular source of truly sad stories.)
But when it comes to her speech, she's been hit hard. She is completely nonverbal, with almost no consonants at all. The thing is, however, that she's got all the vowels and she's got perfect inflection. She's trying, so hard that it will break your heart, and furthermore she hears the words and sounds that she's trying to make. If you hand her something, her "thank you" sounds so convincing that unless you're paying close attention, you don't realize that she actually said "Ain oo".
Ironically, it's those inflections and sincere attempts at speech that can sometimes stand in her way of moving forward on the Big Box of Words. Not at school, I don't think. In her class, all the cool kids talk like cyborgs, so she's excited to do the same.
(That's unless she's feeling like a punk, as she was yesterday, although that may very well be because her box class teacher has been out this week. Apparently harassing substitutes teachers is a genetic trait, because I was a dick to every sub I ever had. One more item on the list of crimes that the devil will be reading off when I die, although honestly, I'm sure it would be on like page thirty.)
When she's at home with Julie and me, however, Schuyler gets lazy with her device, for the simple reason that we can understand a lot of what she says. She's a smart kid; she knows this, even when we pretend otherwise. When she's with us, she doesn't like to use her device.
Thus my idea for the puppet. I just didn't expect it to work so well.
She won't always use the box for us. But it turns out that for Martin? She'll do anything. Last night we studied for a spelling test that she has today, but it wasn't until Martin started asking her how to spell the words on her list that she became enthusiastic about it.
Schuyler's a complicated person, and always has been. She knows that Martin's just a puppet, and that her father is the one manipulating him, just like she used to understand that when I said "Don't eat that!", the goal was to get her to, well, eat that.
Like her father, Schuyler's defining characteristic is that she does not like being told what to do. Monster or not, she negotiates her own terms with the world.