Update: I added a slideshow.
I threw this together this morning, mostly photos from the past year. A lot of them will no doubt be familiar. Sorry it's sort of mopey. It's been sort of a melancholy weekend.
"I just want to go with you..." (16 MB)
April 30, 2005
Fed-Ex delivered a box yesterday, oh yes they did.
Last week, this whole quest for Schuyler's electronic voice was put to rest when we purchased the Vantage Plus from Prentke Romich. Delivery was delayed by a week due to the fact that some school district somewhere (obviously not Schuyler's) had just purchased something like twenty devices, essentially all the ones sitting in the warehouse. They built a brand new one over the weekend just for Schuyler, and it arrived yesterday morning. I actually got up early and took a shower so I would look nice when it got here. For the life of me, I have no idea why. I hope the Fed-Ex guy was impressed.
It almost didn't happen, thanks to the fine fine folks at Bank of America. (Ironically, this was two days after I received hate mail from a BofA employee.) When PRC attempted to run the charge, the bank declined it. When I called them, they told me that there's a limit to the amount that can be charged per day. When I explained what the charge was all about, the answer, typical for Bank of America, was "Tough shit for you, Valued Customer." It took an hour on the phone going back and forth before it occurred to the third customer service rep I spoke to that the limit was per card, not per account, and since Julie had her own card, we could simply charge it on two different cards.
Incidentally, the lesson to be learned here is that as long as you're calm and professional and not being abusive or swearing, customer service representatives can't hang up on you, so if you simply keep saying "I'm sorry, but we're going to have to figure something else out, I simply can't accept that answer," they have to keep dealing with you. I'm not convinced that the two-card answer simply never occurred to someone for that first hour. I think it might have been the "Oh, fuck this" option.
Battling the bank was the last hurdle, however, and the device arrived yesterday, followed about an hour later by the funky little Timbuk2 bag we ordered for Schuyler. The only thing I didn't think through when choosing a bright pink bag is that the device itself is pretty heavy, and when we're out in public, I will likely end up carrying the bag for Schuyler a lot of the time. Call it the Secure In My Manhood bag.
I spent most of the day yesterday programming the Vantage and getting everything installed onto the computer. Instead of buying a PC, I decided to try running Virtual PC on my Mac, and so far it seems to be working just fine. (As a long-time Mac guy, it's a little disconcerting to see Windows XP booting up on my iBook, but I'm not going to have a big Mac v. PC nerd freakout about it.) I'm having some cable issues that I need to resolve, but I'm a smart enough guy. I went to college, I can figure this out.
So after everything we've been through, after almost two years of knowing Schuyler's monster but having no weapons at all to use against it and after two months of trying to make this happen, Schuyler has her Big Box of Words, and she's already using it. She's navigating through multiple levels in order to get to the words she wants, which is way ahead of where anyone thought she would be at this point. I mean, she had the test device for two weeks, and she's had her own BBoW for one day, and she's already finding the words she needs on different pages and levels, and she's remembering how to get there. It really is amazing to see, and this is coming from one of the two people in the world who have said all along that she was going to be all over this thing. She's surprising even Julie and me.
I have to confess that I do, selfishly, have some mixed feelings about the BBoW. I know that this is a great moment for Schuyler, maybe the best yet in her short life, and it's going to turn things around for her. But as I sit with this thing, customizing it for her and having her try it out as we go along, I very occasionally can't help think that it's sort of a strange thing we're celebrating. It's a little like saying "Hey, my new artificial leg is here! It's got hydraulic ankles and a built-in mp3 player!"
When I think of what I always hoped for when Schuyler was a baby, when I remember all our aspirations for her and all the milestones we were going to celebrate with her as she grew up, I don't think that I ever looked forward to the day when she would get her slightly creepy little robotic voice in a box. It's selfish; I'm not that parent anymore, and I haven't been for a long time. This is Schuyler's reality, and ours, and if her transition from mute little girl to communicating cyborg is something that counts as a good thing in her life now, then at least she doesn't have the creepy glowing red eye. (Although that might be good for dealing with bullies on the playground.)
So I'm stifling my inexplicable sadness at what Schuyler has become as best as I can, because it's selfish and stupid, and instead I'm celebrating what Schuyler is now going to be able to do. I won't be celebrating alone, either. I know now that as strange as it may seem to some and as new a concept as it may be, Schuyler's got an extended family out there the likes of which has never been seen before. She's got a voice now because of YOU, and for that, we'll always be more grateful than you can possibly know.
You realize, of course, the button I programmed first.