I can’t begin to count the hundreds of hours I’ve spent programming devices to give Deane a voice. Add to that the number of hours I have sat in meetings setting goals of what he should be able to do with those devices and I’m sure there are weeks that I’ll never get back.
In addition to “yeah,” a head shake, a few modified signs and PCS pictures, Deane has had three voice output communication aids to help him “speak.” A VOCA, as they are known in the industry, is a device that generates speech when activated. VOCAs range from a large button that will replay a recorded phrase or sound when the button is pressed to touchscreen computer-like devices with multiple interlinked pages that a user can navigate through to develop complex sentences expressing unique thoughts.
At least that is the a goal. Complete sentences giving voice to individual thoughts is a goal I have heard many times from conscientious and well-meaning, if bureaucratically bound, professionals since Deane got his first VOCA.
We began with a Dynavox (then a DV4). Initially, it was programmed with school activities and the associated vocabulary. Then we began to add real pictures of some of Deane’s other activities and his friends and family members. Deane really enjoyed this. He is a social guy. People, far more than things, motivate Deane.
This brought me smack up against my biggest frustration about purpose-designed VOCAs. In this age of handheld mobile devices that carry thousands of songs, videos and photos, surf the internet and link users to anyone around the world through text and email, why are these devices so big, heavy and awkward to program? The Dynavox that Deane used had 264K of memory. (Remember when computer memory was measured in kilobytes?) Even after dumping every piece of excess programming that tech support could suggest, it was not robust enough to keep up with Deane’s demands for pictures. and vocabulary.
The programming, even when they developed a computer version of the software, was anything but intuitive. There was no hitting Enter to accept the obvious option. Each button was a number (I think it was five) of painstakingly manual steps. Every time a teacher began a new unit, more hours were needed at the computer creating buttons with the appropriate vocabulary.
Just like the PCS picture symbols, Deane was still limited to what someone else has put into the device.
Tried of listening to my frustration with the seven-pound Dynavox, my husband began looking around for other,more current options. Enter Proloquo2go. It is an augmentative and alternative communication (AAC, for those not in the know) program designed for the iPhone, iPod and iPad. After extensive online chatting with users – many who had switched from purpose-built devices – we wanted to give it a try. Not only did the memory and programming issues mostly disappear, but who wouldn’t want their child to have a hip new toy on their wheelchair? Certainly my early adopting, tech-savvy husband did.
Unfortunately, the Speech-Language Pathologists we worked with were not convinced. They had issues with Proloquo2go because it was not designed by SLPs using a proven method of proper communication building. There was also the issue of the devices. The system used in Ontario has a central office that buys devices and leases them to the users. Before a device can be bought it must be approved by a committee. This has worked well with the purpose-built VOCA that cost upwards of $8,000. We lease it for $800 a year and can simply return it if it stops working. The iPads and iPods didn’t fit nicely into this system.
In a stubborn move, we bought Deane an iPad (for about the same as 1 year’s lease payment) and I laboriously copied every one of his close to 100 customized pages from his Dynavox into his iPad. The programming was easier – especially adding pictures, including jpgs of the covers of all his favourite DVDs. And I could do it in front of the TV with the family rather than holed away staring at a computer screen.
I’d like to say Deane took to it instantly, but that would be an exaggeration. However, once he was using it at school, he swiftly began navigating through the pages. His teacher suggested that he use an iPod attached to his tray for small talk on the bus or when he first arrived in class. A little more Proloquo2go programming and he could greet his classmates, ask how they were, what they did the night before and what they were going to do at school. It helped Deane communicate directly with his peers – another oft repeated goal.
As good as this was, it was not the perfect solution. The iPad is not a computer, nor does it connect to one. So if Deane composed a sentence using Proloquo2go on his iPad there was no way to transfer it into a computer and print it out. The goal of Deane being able to write a note, a letter or a school journal was out of the question.
So he continued to use the Dynavox – although I boycotted updating it – at school for writing purposes. It seemed ridiculous to make Deane remember two different systems. After much discussion it was decided to get a new VOCA – the Vantage Lite.
This is another purpose-built VOCA with a very robust SLP-approved program. Deane, his new teachers, educational assistants and I are on a steep learning curve again. It will connect to a computer to allow Deane to write. It also can be programmed to control the TV, connect with the internet and bluetooth to a telephone. And, yes, it does have a voice that allows Deane to talk.
What concerns me is the predictive function of the program that changes the pages under Deane’s fingers depending on which word he presses. This summer he kept saying “Good job,” to me. While I was happy to take the compliment, I was surprised that he had put this combination together. Then I watched him do it and realized that after he pushed “good” the screen changed and “job” appeared in the same spot where his finger was resting. I see how this makes sense for some users, I’m not sure Deane is there yet. I fear that for a child who cannot read it creates a frustration that could be disincentive to learning this thing.
As I finish this, I’m heading off to another meeting in which his teachers are going to learn how to connect the Vantage to a computer. At previous meetings like this, I have received pages with the date and a few sentences (often saying what he wants to do when he is allowed off the computer) with repeated or misplaced words as demonstrations of Deane’s writing.
I get the concept that learning to write will widen Deane’s communication options. But I wonder if the approach is too restrictive, too by-the-book and perhaps too out dated. I don’t need Deane to construct a full sentence for me to understand him. Nothing would make me happier than to receive a text – with words missing, spelling errors and short forms – from my son. I’m quite certain I’d know what he meant.