An Actual Conversation With Maggie | Rett Syndrome


by ajtesler

We got the Eye Gaze Computer!!!  After a very hard fought battle with the district, they gave us the communication device Maggie needed.  They wanted to help the whole time, there were just a lot of hoops we had to go through.  But in the end, we got it.  I spent the better part of the last month programming it and then reprogramming it and then reprogramming it again.  I want to make sure it’s the perfect thing for her and they can never take it away.  (They could take it away if she doesn’t show an aptitude for it by the end of March)  It’s a PC, so it’s slow, and programming has been extremely tedious.  I’ve fallen asleep with it in my hands on more than a few occasions.

But now it’s in good enough shape where Maggie can really start to use it.  It’s been awesome.  She’s picked it up really quickly and we are able to actually communicate with her.  Look, it’s not perfect – we have to put in her vocabulary and words that we don’t know she knows, she doesn’t get to use.  The height and orientation have to be perfect for it to work and with her moving so much, just getting her to sit and attend to an activity is a tall order.  And, any extra second you take adjusting is another second she can decide “I’d rather do something else”.  But, while I don’t get to have a conversation, to the fullest extent of the law, I do get to hear what she’s thinking, more or less, some of the time, when she decides she wants to share.  At least now, it’s slightly more her decision than it was a month ago.

I’ll let the video speak for itself.  Accept, of course, all the words above I already am using.


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