Meeting the Big Box of Words, 2005

In Chapter 19 of Schuyler's Monster, "A Big Box of Words", I described a short video I'd taken of then-five year-old Schuyler doing some fundamentals on a PRC speech device. She was waiting for her own Vantage, her Big Box of Words, which was still being manufactured for her. She'd been on this loaner for only two weeks.

I'd thrown together this video because Schuyler's IEP meeting was coming up, and I had a suspicion (ultimately correct, as it turned out) that the Manor school district's technology advisor was going to report that Schuyler was incapable of using the high-end device. I wanted to show the members of Schuyler's support team how she used the device in a number of ways, including some one-hit preprogrammed answers, simple sentences about what she wanted to eat, and descriptions of things like colors that required her to navigate through subdirectories. The video made a huge impression and changed many of the attitudes towards Schuyler's use of AAC technology, although ultimately the Austin area school was a failure and we ended up here in Plano.

As I was looking something up for the speech I'm working on for the TSHA Conference next month, I was surprised to discover that I actually still have that video file. I thought you might like to see it for yourselves, if for no other reason than to see little five year-old Schuyler. This really was the beginning of something important for her, and after all the computer crashes and such over the past four years, I was surprised and happy to see that I still had it tucked away.

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(Excerpt from Schuyler's Monster: A Father's Journey with His Wordless Daughter, Chapter 19 "A Big Box of Words")

OPENING SCREEN: MAY 17, 2005"

Schuyler standing beside table
Me: Hello!
Schuyler: (waving) Hi!
Me: Okay, can you come show me your words now?
Schuyler sits down, in front of her Prentke-Romich Vantage Plus
Me: I'm going to ask you some questions now. What is your name?
Schuyler: (touches screen a few times to get to the preprogrammed greetings page) My name is Schuyler.
Me: And how old are you?
Schuyler: I am five years old.
Me: Now, who am I?
Schuyler: (points at me and smiles) Oo! ("You.") Daddy. (points again) Oo!
Me: Thank you! (places a purple rubber duck on table) What color is this?
Schuyler: (navigates to colors page) Color pink. (hits backspace, corrects herself) Color purple.
Me: All right, very good! (Schuyler picks up duck and makes it hop away as I speak.) Where do you live?
Schuyler: (navigates back to greetings page) I live in Austin.
Me: Are you hungry, Schuyler?
Schuyler: Yeah! (navigates to main page) Eat.
Me: What do you want to eat?
Schuyler: Pizza.
Me: Say the whole thing, please. Show me the whole thing.
Schuyler: I want eat pizza.
Me: Very good! (Schuyler laughs and claps.) Are you thirsty?
Schuyler: Drink water.
Me: You want water? Can you say the whole thing?
Schuyler: I want drink water.
Me: Okay, good, we'll do that in just a minute. Do you have a doggy?
Schuyler: (nodding head) Yeah. (navigates back to preprogrammed greetings page) I have a dog named Lulu.
Me: Schuyler, can you tell me what this is? What does it do?
Schuyler: I use this language communication device to help me speak.
Me: Schuyler? What does a monster say?
Schuyler: (giggles and navigates to main page, hits button twice by mistake) Rire! Rire! (claps happily)
Me: Okay, Schuyler, we're all done, can you say goodbye?
Schuyler: Goodbye. (waves to camera) Aye, ah-ee! Aye, ah-ee! ("Bye, Daddy")

The lights came up and the members of Schuyler's IEP team began murmuring among themselves. Margaret sat quietly, her face unreadable. Tammy looked over at me and smiled.

"So that's what she's doing at home," I said, closing my laptop, on which I'd been showing the brief movie they'd just watched. "I shot this two nights ago. She had the loaner device for two weeks, and she had just been using her own Vantage for two days. You can see that even now, she's able to answer questions using preprogrammed answers, and she's able to find and identify colors. She's using multiple levels to find food menu selections, and she's putting her choices into very simple sentences. And she's enthusiastic about it, she uses it now to answer questions that she's perfectly capable of signing. She's just barely getting started on this."

Tammy nodded. "Mr. Hudson, this is great, I'm so glad you brought this in. I've been reading Margaret's report, and I have to admit, I was concerned."

"We just read that this morning," Julie said. "I don't understand what's different at home from what happens when she's here."

I knew exactly what she was talking about.

Static one-hit voice output devices can be utilized successfully if supported in the specific setting. Preprogramming and setup would be necessary to ensure that Schuyler could have powerful and successful communication when she activates the button. The high tech dynamic devices have not been more successful, nor provided clearer communication than her other communication modes. Due to her need to have more opportunity [sic] learning the system, learning the language, and recognizing the power of a voice output, all modes should be used for communication.

Inconsistent willingness to use the devices has also hindered progress. However, Schuyler has great potential to use a dynamic voice output system in the future. Thus, even though the dynamic voice output is not educationally necessary at this point, she would greatly benefit from early intervention and training on the dynamic voice output systems for her future communication.

"I didn't know what Margaret's report said before I videotaped Schuyler on her device," I said, "but I'm glad I did it now. I'm concerned about this ‘inconsistent willingness' to use the device. If there's a difference between what's happening at home and what's happening here, I'd like to bridge that so she's experiencing roughly the same thing in both places. She's thrilled to use it at home. I'd like her to feel that same excitement when she's here."

The meeting went our way, I'm happy to say. The movie had spoken for itself, and while Margaret was still a bit of a pill for the rest of the meeting, she didn't have any serious objections to embracing the device as part of Schuyler's curriculum. Indeed, she'd already said as much, if grudgingly, at the conclusion of her report.

"There's one last issue to work out," said Tammy. "I know you want Schuyler to attend summer school classes this summer, and that was up in the air. The issue is this: will a child regress beyond what we consider to be typical during the summer, to such an extent that she will fall significantly behind her peers in the fall? The irony for Schuyler is that she has done so well on her device and in her general school work that it would be hard to justify her inclusion in summer school.

"However," she continued, "Michelle has suggested that since Schuyler is so new to her device, we should make a request to the board that she be included in the summer program in order to continue her training. I'll let you know in the next day or two whether that's going to happen."

And just like that, the most productive IEP we'd ever had was over. We shook everyone's hand and accepted congratulations. Before people could leave, I stood up.

"The only other thing I want to mention is that when this report says that Schuyler's device is not ‘educationally necessary,' I hope you all understand that we believe otherwise. It is our position that this is the most promising development yet for her, and we'd like for everyone to be on the same page."

It was a snotty way to end things, and perhaps had a touch of "How do you like her now?" but we had fought so hard to get Schuyler that device, and if I hadn't had a big fancy Web site with generous readers, we would have lost that fight. When we stepped back and looked at the whole story of the Big Box of Words, from the earliest discussions to the moment Schuyler's little fingers touched the screen, one thing was consistently true and was now being proven by her own success.

They were wrong about her, and we were right.

(Schuyler's Monster: A Father's Journey with His Wordless Daughter, St. Martin's Press. Copyright 2008 Robert Rummel Hudson )