Talking through quotes is just one of the ways Janey communicates in what could be called non-standard ways. It's fascinating, but it's also very frustrating. As she gets older, and some things get easier, the communication doesn't seem to be getting smoother, and more and more, I think it's a piece we have to work on. I can figure out much of what Janey is trying to tell me, but I am not always going to be with her. I wish so much we could find a way to help Janey talk to the rest of the world, and talk more easily to us. I think so much of her frustration and anger could be helped by being able to tell people more easily what she is thinking.
On a day about a week ago, a day that featured much screaming, out of desperation I found an iPad app called GoTalk Now. It was free and easy to set up, and looked like something Janey would be able to figure out. It let me create 3 pages (in the free version) of touch screens with words or pictures or phrases, with up to 25 per page, that Janey could touch to hear out loud. I hoped she might use this especially for emotions. I made a page with my own face showing nine emotions, and my voice saying the words. Janey understood easily that she needed to touch one of the faces to get the emotion spoken, but like almost all attempts of this kind, she wasn't interested in using it to communicate. She did, though, take to one of the buttons, me making a silly face and saying "Silly!" She hit it over and over, and each time since then I've tried to get her to use the app, which I expanded with a page of phrases she might need and a page of names, she quickly and easily goes to the feelings back and hits the silly button. No matter how often I try to use the other pages or the other feelings, she is interested only in hearing "silly" over and over.
|Janey watching TV|
As we get through our days, figuring out if we can what Janey is asking for, guessing at her sometimes cryptic way of getting her meaning across, I worry. I worry because Tony and I will not live forever, and I want Janey to be able to talk to a wider world. I want her to have a way to tell whoever she needs to tell what it is she wants and needs and thinks and feels. There is so much she has to say---I am sure of it. There must be a way, some way, somehow, to help her communicate in a way that is more universally understood than the way she does now.