Thursday, March 15, 2012
Maggie's New Voice
Someone pointed out to me that when I talked about the love/hate relationship with the trach, I left out the fact that it silenced Maggie's voice and her giggle. That definitely falls into the HATE category.
I find it amazing that someone had to point that out to me, though. For the first few years I couldn't stand it when Maggie laughed or cried and no sound came out. I guess, like everything else in our lives, that has become "normal." Her new laugh, though silent, is just as mirthful. Though I miss the sound I know she is happy and apparently that is now enough..
Of course Maggie's abilities with her dynavox have exploded in the past few years and her communication skills are better than ever. Five years ago, before she had the trach, she as still learning how to operate the device and we never heard the things we hear now. I don't think she was still learning to formulate a sentence. She started telling her jokes after she got the trach too. So much of Maggie comes through that dynavox that it is hard to even remember when she wasn't as well versed in communication. I still miss the sound of her voice, but she "talks" so much more now than she did then.
This week she is learning a new dynavox. After much study of the various options and months of waiting for reports, and then denials so we could get to proper approvals, her shiny new Dynavox Maestro arrived. With the help of Maggie's AAC specialist I was able to transfer the pages from her old device to the new one. There are glitches and things to be worked out, but this machine is very cool. Check out the two next to each other. The Maestro is smaller and lighter than her old one and has a lot more capabilities.
There is a new "voice" on the Maestro which sounds a little like a techno-Marilyn Monroe, sort of breathless and flat at the same time. That's hilarious. For some reason the speaker sounds like it's blown but only when its performing some functions. On others it sounds fine. It's annoying, but fixable. Other glitches are equally annoying, but likely can be remedied fairly easily once we learn what we are doing.There will be a steep learning curve for a while. The dynavox rep told me I could hook it up to the internet and download fixes right to the machine. Right. I can barely figure out how to turn it on.
One criticism I have is that this very expensive machine does not have a case that works for a wheelchair user, and I would guess wheelchair users are a significant percentage of their customer base. It does have a slick case sort of like an IPAD case, but if the case is on you cannot attach it to her wheelchair. Also the strap for the machine is on the bottom so you cannot hold it while attaching the machine to the pole. It is very difficult to mount it without dropping it. I have asked whether there is another way to protect the machine from both of these problems, but have not yet received a response. I'm hoping there is some easy fix to this stuff too.
Maggie will also have to learn the tricks of this new device, but I'm sure her success will be much faster than mine. This is her voice, after all.