Her World, Her Words

When we talk about how assistive technology allows otherwise nonverbal people to communicate, it sounds straight forwaard enough. But as Schuyler continues to grow in her use of Augmentative and Alternative Communication (AAC), it becomes more clear that it isn’t just her ability to speak words that is enabled by this tech. She has the tools now to expand the framework in which her language and the weird, wonderful thoughts in her head can be expressed. It goes far beyond the simple expression of words.

Without her iPad and its speech software, Schuyler works very hard to make herself understood. It must be said, too, that she doesn’t do a half bad job of it, at least when her statements can be interpreted in context of a situation, or in answer to a question. Her mother and I understand Schuyler pretty well, and I imagine some of her teachers do, too.

But her verbal communication is pretty remedial, to be honest. She gets by, and sadly, at least until last spring when we had our big “IEP at the OK Corral” meeting, the school seemed satisfied with that. She used her iPad, mostly for some basic math and writing assignments, but her AAC usage wasn’t encouraged. (At her IEP meeting, at least one of her teachers was actually unaware that her iPad had AAC capabilities, much less that she was supposed to be using it.)

Sixth and seventh grades were something of a low point for Schuyler and her journey with assistive technology. It represented some significant failures, mostly from two parties. Her school district’s assistive technology team neglected to consistently follow up with her after elementary school, and failed to get her special ed and mainstream teachers on board and up to speed. More importantly, as her parents, it was our failure for not recognizing the problem and correcting it sooner.

It’s not a mistake we intend to repeat.

This year, things haven’t been perfect, but they have been much different. It began in earnest last spring, when Schuyler wrote an impromptu poem in the car on the way to dinner. This poem (which she has changed and added to over the months, like her magnum opus) was something of a game changer. With her permission, we shared it with her teachers and with her team at her IEP. It was a clear indication that Schuyler’s creative thinking and her observations about her life and the world around her were going largely unexpressed. AAC would provide part of that answer, allowing her to express more comprehensive and original thoughts.

And as her AAC use began to enter this new phase where it was less about answering questions or making simple observations and more about generating spontaneous and unguided thoughts, so her writing blossomed as well. Much of it comes and goes via her AAC app, so we miss a lot of it, I suspect. (There’s a way to turn on data logging so that we can go back and see what she’s said, but even when she was very young and new to AAC, I always felt like that was an awkward invasion of her privacy. Now that she’s a teenager, I wouldn’t dream of turning it on.)

But Schuyler also does a lot of free writing, creating text files on her iPad both for homework assignments and just her thoughts as they come to her. And it’s here where the results of her increased freedom of expression and communication suddenly become clear.

It’s not perfect; her grammar is touch and go at best, but even then, when she fumbles the language, she doesn’t mangle it so much as twist it into something different. Her language can be broken, but also beautiful and free. A little like Schuyler, come to think of it.

I asked Schuyler if I could share some of these random observations, some of which she has incorporated into poems and others which simply stand alone. All of these were written between last May and just a few days ago. Before then, we mostly had no idea what she was capable of, either as a writer or as a human observer seeing the world through a filter all her own.

“I feel different about talk like this and I was born with my brain. I feel sad I can’t talk like my friends and I feel mad I don’t have a voice.”

“All time I talk to my friends with my iPad mini and I try and I don’t fail. I try to do sign but they don’t understand I saying. I try to do my voice but nothing, they don’t understand me.”

“I want to be an artist with my mom and I wants to help people are hurt. I wants to write a book about sea monsters and huge and mean monsters with my dad.”

“The stars look like small people looking for food.”

“The shadow looks like a person behind you is never coming back.”

“You love your friends like a family to you. You feel like you are that monster to your friend and their family too. If your friend says ‘you are the princess of the Shadows at the first time we met.’ You want to turn into a human like your friend. You miss them like a family to you. You love them as a big family, the nightmares are all long gone from your dreams.”

“I feel I was a different person in this world and in my whole family.
I was born to have no voice and I felt tiny when I was a little girl but I feel HUGE and helpful.
I trying to talk to my friends and my teachers and other people I know.
I saw the winds shakes and come for me and take me away in a dark cave with a dragon.
I saw the dragon trying to eat me but I said no drop me at once or I will kill you.
At that moment he became petrified and released me in the dark cave.
I feel I was a little girl and helpless and felt small and alone in the darkness
I feel kindness and helpful to my people in my Kingdom of the seas.”

And of course, the poem that started it all (in its most current version:)

(I was alone with no ones there!)

“The grass looks green and the sky looks blue but everything else looks gray
The pine tree looks monsters and the sea looks horses in the hill
The desert looks brown and it feel tiny and alone with no one there
The mountains looks old and wise likes wizards with their masters
The roses are red and the snow is white like snow fall down
The sun looks fire in the castle and the water looks like the whales talking to other whales!
I feel tiny and alone with no one there in the dark cave.
I feel super tiny in the deep way of the ocean.”

She signs everything the same way. I hope she never changes it:

Your writer,
Schuyler Noelle Rummel-Hudson