Title: Ten Years of the Big Box of Words

Presenter: Robert Rummel-Hudson, Author
Schuyler Rummel-Hudson, Student/AAC user
Abstract:
Ten years since his daughter’s first encounter with Augmentative and Alternative Communication, Robert Rummel-Hudson (author of Schuyler’s Monster: A Father’s Journey with His Wordless Daughter, St. Martin’s Press 2008) reflects on his family’s experience and his observations on the present and future of assistive technology and disability advocacy. He will be joined by Schuyler, who will share her own perspective on her life with her Big Box of Words.
The most interesting thing about that abstract is the fact that Schuyler will be joining me, as a co-presenter. As we start putting our presentation together, she's trying to organize her thoughts. After talking about it, we'd decided that rather than just sitting down and trying to write something off the top of her head, Schuyler would rather answer specific questions and integrate that into her presentation. And she would like to get those questions from the many people out in the world who have followed her story for so long.
So if you have a question that you think would help Schuyler present her story, you can ask it in the comments here, on my Facebook page or via email at rob.rumhud@gmail.com. We talked about what kinds of questions she'd be asked, and came up with some categories that she's comfortable with.
1) Her use of assistive technology over the past ten years.
2) Her experiences in school.
3) Her experience with polymicrogyria, her "little monster".
4) Her future, both school and her adult life.
5) (And this is a big one, I think.) The parts of her life and her world that have nothing to do with her polymicrogyria. The Monster-Free Zone.
We both thank you in advance. After our presentation on August 3rd, I'll reformat her answers and post them here for everyone.
9 comments:
I would like to know what Schulyer plans after HS. Also, what does she consider to be the monster free zone?
Since Schuyler has been using the iPad and now iPad mini as replacements for the BBoW for a while now, I have questions about that.
How did you chose which applications to use -- both for speaking and for everything else? I know there were (and still are) many contentious discussions about assistive communication applications and various proprietary systems; what were the biggest factors in your decisions? What are your favourite games? Do you (like I do) take a ton of pictures or just a few? Do you store your music on the iPad or stream radio?
What are your preferred cases and covers for the iPad mini? (Look, I know it sounds frivolous, but for a device which is used all the time, it's important. And I'm curious. For example, my father refuses to use a case on his iPhone, but drops it all the time, then he's upset that it's damaged. I put a case on mine and have excellent resale value as a result.)
In a different vein, how are all the animals?
Schuyler. How do most people who are meeting you for the first time react to your "big box of words"? Positively, or negatively?
Schuyler, If you could spend a day doing anything, anywhere, what would it be? What is your favorite accent to use on your device?
Hi Schuyler,
I'm a teacher, so naturally my questions are about school. What are some things that teachers have done that have helped you to have good experiences in the classroom? What can teachers do to make sure you are feeling challenged but not overwhelmed? And (if you can answer this without calling out any specific teachers) what are some things that teachers did that you didn't like, or that you found unhelpful?
Thanks for being willing to discuss your experiences--I've been learning from you and your dad since I was in graduate school, and next year will be my 7th year of teaching. I'm definitely a better teacher because of the experiences you and your dad have shared.
What is the one thing you hate people presuming about you, before they know you?
Schuyler, what about soon being an adult excites you the most? What about becoming an adult scares you the most?
Your dad recently made a post about how someone kicked you out of a waiting room before you had a chance to explain yourself, and also a situation where you argued with a teacher over sharpening a pencil. Can you explain what obstacles you encounter with AAC tech when you experience unexpected conflicts? For example, does AAC use make it especially difficult to spontaneously communicate in a situation you did not anticipate and in which any person would be flustered? Can AAC tech improve to help you with that, or is it more of an issue of confidence/being caught off guard?
Second question! What do you think about the VocalID project, where researchers are using voice donors to try to make a more realistic and personalized voice for AAC users?
Schuyler, I'm the mother of a 2-year-old son (he will turn 3 on August 5) whose current diagnosis is that he has a severe speech delay (for reasons yet unknown). If you could put yourself in his shoes, what would you tell me, his mom? I'm scared and confused and nervous for my son. What advice do you have for parents who are in this spot?
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