Monday, May 2, 2016

Giving Up (Steve)

I got an E-mail from Kaito's mother about his use of an AAC device and how it works. She told me he can speak some Japanese phrases, but the device is only in English purely due to its technical limitations. I was about to get a device myself because my speech hasn't really improved despite missing numerous orchestra and brass band practices in order to go to speech therapy. It was really taking a toll on my musicianship. Speech therapy took up time that could have been dedicated to music. I have no desire to improve my speech anyway, so why should I? It doesn't impede my ability to play the trumpet. I noticed that she used phrases like "to assuage your fears". What fears? I was honestly excited to have this student!

The only concern I had was evoked by the following statement: "If Kaito starts spamming words, silence his device." Okay, why would I do that? That was his voice. I would never forcibly tape a student's mouth shut because they were talking too much. I have done a variety of things when students would not stop talking, but removing their voice was not one of them. Why was it okay to do that to a kid like Kaito? He could be spamming out of frustration or for another reason. And spamming? Really?

I was honestly surprised that I could keep my job as the Mindcrack Middle and High School band director when it demanded the continual use of spoken and written language. However, I found ways to circumvent these problems. My students learn early on how to follow my baton and gestures. The foreign language department says being in band with me greatly improves their linguistic abilities. However, I think that can be said of learning music in general. One of them even said our students were "fluent in me". Aphasia, a language disorder, can become a language in itself.

But then I worried that a part of me that sent the message that giving up is acceptable. It took me three weeks to be able to produce any sound on a trumpet. Grateful for those little fracks, I somehow managed to end up a somewhat decent trumpeter. I was the last of the third trumpets in high school until halfway through my junior year. I was a second trumpet. I ended up an okay teacher and now I'm a horrible teacher. I want to be able count out loud again. I want to be the hero everyone makes me out to be. I suppose there's a reason for the lack of disabled heroes--true heroes, I mean, not the "inspirations" for doing everyday stuff.

And if that role has to be played, I suppose it's up to me. I went into the End a dragon slayer. I hoped for a triumphant homecoming, but I returned the same quivering mess I always was.

Caitlin and I decided to get lunch after that random stream of thought. We had been practicing our instruments for four hours straight; both of us were hungry and tired. I was lost in my head most of the time, just letting the notes flow from my mouth to fingers into my instrument. She slipped her hand into mine and smiled at me as if I were the hero she thought I was. Sure, I slayed the dragon, but I am not that man. He wasn't just happier than my current self. He was...free. More than anything, I wanted to be him again.

We sat down at a cafe while a waiter took our orders. Caitlin ordered for both of us in fluent French. I couldn't even order food in nonfluent English! She changed between French and English easily, never skipping a beat. The food was good. The steak was cooked the way I liked it and well-seasoned, the fries that came with it were crispy on the outside and fluffy on the inside, and the house-made ketchup had the right ratio of tang to sweetness. However, I could not enjoy my food as the others, even Caitlin, did. She savored every cucumber in her salad (yes, a salad made entirely of cucumbers) with its light dressing. The taste of the pear juice she ordered seemed to bring a smile to her face. Her "Miam-miam" rang through the air as if she sang it. However, she eyed me with concern.
         "You've haven't said a word all day. Are you okay?" No, I wanted to say. I wanted to draw my sword on the spot and drive it through my heart right then and there. However, I just nodded. I continued to pick at the remainder of my fries. Now, they just tasted like glue. "You know, finding a better way isn't necessarily about giving up." Seeing the cane rest on her chair, I nodded in assent. If Kaito was willing to participate in band, I should do the same.

Now, to find resources for teachers that use AAC....

4 comments:

  1. Steve I'm so sorry you feel this way! I use an ACC and sign language when I can't/struggle to speak/articulate clearly. But listen to me, do not, I repeat do not give up on your life! You have so much to live for! You have Caitlin, you have your students who adore you, you have friends who think your awesome and you have Alex! And if it makes you feel any better, we're pretty much the most disabled emotionally disfunctionsl group of antihero's you can get. But that doesn't make us any less hero's!! I hope things get easier Steve, let me know if you ever want to talk.

    Sincerely,
    Anna Lenox

    ReplyDelete
  2. Words? Spamming?

    All the good devices I've seen have a babble feature. Kaito could/should use that. And if it is in any way musical or pictorial/visual...

    And does he ever make walls of text? Walls are important in Minecraft.

    "My students learn early on how to follow my baton and gestures. The foreign language department says being in band with me greatly improves their linguistic abilities. However, I think that can be said of learning music in general. One of them even said our students were "fluent in me". Aphasia, a language disorder, can become a language in itself."

    Oliver Sacks' MUSICOPHILIA has a good chapter on aphasia and how therapists and others become fluent in aphasic person.

    "But then I worried that a part of me that sent the message that giving up is acceptable. It took me three weeks to be able to produce any sound on a trumpet. Grateful for those little fracks, I somehow managed to end up a somewhat decent trumpeter. I was the last of the third trumpets in high school until halfway through my junior year. I was a second trumpet. I ended up an okay teacher and now I'm a horrible teacher. I want to be able [to] count out loud again. I want to be the hero everyone makes me out to be. I suppose there's a reason for the lack of disabled heroes--true heroes, I mean, not the "inspirations" for doing everyday stuff.

    And if that role has to be played, I suppose it's up to me. I went into the End a dragon slayer. I hoped for a triumphant homecoming, but I returned the same quivering mess I always was."

    And no, "finding a better way isn't necessarily about giving up".

    What makes a way better, Caitlin?

    About heroism: THE GOLDEN BOUGH and THE HERO'S JOURNEY by Frazier and Campbell respectively.

    Might make an in-character/in-universe response.

    ReplyDelete
    Replies
    1. A babble feature? How does that work?

      Thank you for the recommendations.

      Being a true hero is a concept I'm deconstructing through this story. That starts by stripping away the hero aesthetic.

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    2. Go to the Nieder family. It is especially good on Speak for Yourself. I think other devices have them too. It's the principle more than the device.

      Babble is when you select a word and go through/explore your device for something to say.

      It is supposed to replicate a toddler or preschooler playing with language - any pre or minimally verbal person.

      "Stripping away the hero aesthetic".

      This is important. We do think and feel a certain way about lots of heroic behaviour. Starting from the external and ignoring the internal. Sometimes a hero can be a spineless jellyfish.

      Medium has lots of wonderful examples of heroism and vulnerability.

      The other website I'm thinking of is Authentic AAC [that would be alternative and augmentative communication]. Or rather, PrAACtical AAC.

      I wonder if Kaito feels like he's living in this glass cubicle?
      Heidi LosStracco's perspective on "appropriate behaviour"
      Speak for yourself Facebook page

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