Friday, June 02, 2006

Of doodads and debt loads

Tam and I have been working with the FACTS team at Freeport to see if there isn't some kind of gizmo that could help her communicate. Most people can understand her if they don't mind taking the time to make educated guesses based on context, ask her to repeat herself several times or to use different words, or, when there's just no way to figure out what she's getting at; nod their heads in mock understanding to get her to continue, in the hopes of gaining a clue. It's a frustrating process though and you have to really want to make time to talk with her, which means that most people don't bother, which drives Tammy nuts.

While there's no way anything can be done to restore her normal skills of conversation, there are frequently used words, phrases and scripts that can be strung together to help her with both day to day requirements and small talk; and computers that can say those things flawlessly so that people can understand them. That's basically what we've been working to get set up, but it's hugely complicated by the fact that Tammy's HD keeps her from being able to use just about any form of input device -- it's almost as hard for her to tell a computer what to say, as it is for her to get it said herself. Now Tammy's had her heart set on a computer from the moment we found out that assistance from Freeport was available, but the nagging problem of input had it ruled out in my mind from the beginning, and I've always tried to downplay it as a possibility.

The meetings with FACTS were few and far between at first, and started off with basic questions to Tammy to gauge her cognitive ability and the types of things she wanted to talk about. Her most frequent answer to their questions was "Can I have a computer?", but fortunately they managed to peer through this HD-fueled obsessive-compulsiveness, and make progress anyways. Next was an assessment of her reading ability, which is practically nil because she can't track her eyes across a page anymore. She can still recognize a word or two placed by themselves though, and the specialists figured that out too. The pace of meetings began to accelerate and next we were looking at the sizes and shapes of devices that could be attached to her chair. Here we had a hiccup waiting for the new chair to arrive, but once it did the meetings continued.

Then things took a step backwards as we met to figure out what sort of pushbutton Tammy could press, and we talked about replacing her call bell. This was good since Tammy's been unable to use her's for at least the last year, but it seemed they'd given up on advanced communication and were getting back to practicalities. I was dismayed but unsurprised, and Tammy seemed to pick up on it because her "Can I have a computer?" pleas came out more often (if such a thing was possible) and sounded even more desperate. Nonetheless another meeting was scheduled and seemed to get us back on track as we moved to looking at picture cards to see what sorts of things Tammy could recognize, followed by which arrangements allowed her to differentiate them best. (Two columns with plenty of whitespace between them.) At the end of that meeting they did something that blew us both away... they pulled out a computer!

The moment that femme-bot voice said 'yes', Tam's face lit up and I knew she was hooked, but the problem of how she could actually use the thing began looking more insurmountable than ever. As they asked her if she could recognize this picture or that picture on the screen, expecting a yes or no answer; Tammy tried touching them instead, and her jerky movements invariably selected the wrong one, the femme-bot dutifully calling out 'boat' instead of 'car', 'glasses' instead of 'hat'. I felt crushed as the meeting ended, to have seen Tam come so close to her dream; but another meeting was scheduled for next week (today) and they vowed that the computer would return.

At today's meeting it did, and all the disjointed pieces of meetings before it suddenly came together. This time the device was programmed just for Tammy, with pictures she could recognize in two columns with plenty of whitespace between them. The pushbutton too had returned, and as the pictures highlighted one at a time in slow sequence, all Tammy had to do was hit the button when the picture she wanted was lit. Now here was something she could use! By the end of the meeting we'd determined that three rows of pictures was the most she could handle; that she couldn't spot the highlight frame no matter how thick we made it, but could pick out an inverse highlight; that the inverted photos were incomprehensible to her, unless they started out as simple objects against a white background; and that audible cues read quietly to her by the computer as each picture was highlighted, was simply information overload. From all this came a long list of homework for both the programmers and myself (as dialog researcher and family photo source), but by the end I think we'll have something workable. At least for a few months until HD takes these abilities away from her too, at which point, hopefully, the programming can be adjusted again.

On the topic of payment, well that came in the form of one of those 'good news, bad news' sorts of things. The good news is that the Ontario government's Assisted Devices Program (ADP) will cover 75% of the cost, the bad news is that it runs about $10,000. Fuck it, my Tammy's worth it.

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