It's been a while

Anna has been using her Tobii c12 at school, but like me, I think her teachers are a little overwhelmed with all of the possibilities that we can do with the computer and it is a little hard to know where to start.  I think we need to start with a page that just has YES NO on it.  Tonight I asked her if she loved me and she said "yes", and when we asked her if she loved dad she said "no".  And of course dad acted all affronted and Anna thought that was funny.  Some of the time she refuses to look at the computer and using it really tires her out very quickly.  Tonight she used it for about thirty minutes, and then somehow she found the tiny little icon that went to a page that let her choose between three different choices and before I knew it she quickly (very quickly) chose "shut down computer".  And believe me I think she really knew what she was doing.  Anna has spent 14 years in her own mind with her own thoughts and now suddenly we want her to interact with us in a meaningful way and she will comply up to a certain point only. She is a teenager after all.  But little by little I think we will continue to make progress but it is going to be slow. 

training day

I haven't posted for a while.  Yesterday we were trained on the Tobii C12 by our Tobii representative.  After spending 3 hours putting on the mount, she had to take it off and put it up higher on her wheelchair, but basically we had it right!  This puts Anna in  better position for the eye gaze technology.  At home the other day, Anna told me that she wanted a peanut butter and jelly sandwich and then she looked me straight in the eye and smiled.  That is a small victory because I know that she knew she was making a choice.  So she got her sandwich and she gobbled it up pronto.  These are the moments when I am hopeful that as we move along in this process, the technology will become more useful as Anna makes more meaningful choices.  She is still learning, so most of the time she enjoys engaging the computer and just making noise, but if one watches closely she will make choices.  For example yesterday, during the training, she kept perseverating on certain buttons and there was a lot of excitement and confusion in the room because the teachers were getting their first looks at the computer.  But I asked her two questions and she made the right choices on both!  The Tobii rep also helped us set up the 3 side buttons, one of which is a PAUSE button, and that is helpful, because when
Anna starts perseverating on an icon, we can pause the computer and redirect her attention.

Anna's teachers and therapists were excited and very engaged in learning how to make pages and buttons.  I think they were surprised at how easy the software was to learn.  They are going to download the workbook and work through that during a professional development day.

spring break

Anna took a long break from her computer while we travelled to New Orleans for spring break.  She loved Bourbon Street because the girl loves a spectacle.  Isaac said Bourbon St. is a complete nightmare.  Charl was deliciously scandalized! 

Back home today, we tried the computer out after this long break, and Anna was even more delighted than ever to have it hooked up in front of her.  Today I let her explore because truthfully that is where we are right now.  She likes cause and effect and doesn't really want to answer her mama's questions although she did tell me that she wanted juice and that she loved me.

We played a couple of cause and effect games, which she enjoyed, that used noise as a reward.  At one point she was talking about eating cookies, and we gave her some cookie.  She smiled like she "got it". 

We don't know her capabilities but for now she seems to enjoy her computer.  I am going to go to Linda Burkhalter's site (I think that is her name) and check out her PODDS.  She has worked with many girls with Rett Syndrome so I hope to find some good ideas soon on how to incorporate the computer into Anna's daily life. 

A break is a good thing

We took a break from the computer for a couple of days.  When I hooked it up tonight after she had eaten she was all smiles and attentive.  She said "I want to drink" so I gave her coke (a cola).  She also said "I like music" so I got her mp3 teddy bear.Tonight I got the impression that she sort of understood that she can use it to express herself and not just as something to make noise.  It was a good night.  Tip:  A full tummy and a good mood go a long way towards having a good computer session.  Also, she got a "high" calibration score tonight and last two times we used the computer she had low scores.  I adjusted her chair and the computer a bit and that seemed to help. 

I haven't made any new pages.  We are concentrating on the ones we have already and then will make more once we have our training with Tobii rep. April 6.

hmmm

Not sure what to make of this technology.  Anna often gazes at a button over and over so that it says the same thing over and over.  But for now she seems to be enjoying the cause and effect.  She has a button that says "What is your name" and when I asked her her name, she said "my name is Anna".  Of course I tried to get her to do this over and over and over and she refused.  Last night we made some buttons that said "I love my mama", I love my daddy, etc and Isaac made one that said "Charl is mean" and he loved it when Anna pressed it repeatedly.  Charl was not amused.  Anyone with ideas on how to use this for girls with RS, please chime in.  Next week is spring break so we will take a week off and then resume working.  Next I want to add music which I know is very motivating for Anna.

Now we know why we aren't engineers

It took 3 hours and 4 degrees between us, but we finally got the mounting arm assembled on Anna's wheelchair.  I won't go into all of the gory details, but Chris was very patient.  Later, after a walk to get us out of the house, I assembled the C-eye device.  We mounted it on the wheelchair and let Anna calibrate.  The first couple of times she got a low result on her calibration, but towards the end of the session, I got her to calibrate again, and she got a medium result.  At first I was disappointed with the device because I opened up the ready-made pages and they are too complicated for Anna.  Finally, I found her page sets that I made yesterday and opened one that just contained 5 buttons.  She got to say, "my daddy" (she said that first and only wanted to say that for a while), "joey" and then finally she said "my mama".  Then I went to a more complicated page and she tried that out, finally sticking to "eat" "eat" "eat" "eat"  so we ended the session soon after that because she was getting quite cross because we weren't obeying her command.  I am very pleased with her progress for her first time!  She got to say "My name is Anna" and that really made her smile.  This week I am going to make some very simple four button pages entitled:  my family, my favorite foods, what I like to do, etc. because I think we need to start as simple as possible.  But it is gratifying to know that Anna really "gets it" and she will find her voice slowly but surely.

Lots of boxes

The friendly UPS man dropped off 2 large boxes, 1 flat rectangular box, and one very flat square box on Wednesday.  I spent the first night opening smaller boxes inside the larger boxes and now I have cardboard boxes all over the house.  It is a bit daunting when I was expecting a compact box holding the device plus a box for the mount.  Anyway, some of the stuff I didn't even know the purpose for, but now that I've opened the computer, turned it on, and started getting familiar with it, I am learning what all the little boxes within the bigger boxes are for.  So here is the status:  We haven't attached the Ceye device because I am going to spend some time this weekend making "pages" from Tobii Communicator 4.  The representative sent the workbook for this software and I am going to plow through that and make a few pages.  This software has a 4" thick manual that accompanies the computer so it is going to take some "larning" on my part.  Last night I sat at the table and showed Anna the computer using the touchscreen and she got to "say" in her weirdly digitized voice, "My name is Anna", "My pet's name is Joey", "I like to eat bananas", and "I am thirteen (although it sounded like 30) years old."  So it will be interested to plug in "Charl" and see how that is pronounced by our new friend.  Anna was smiling and very attentive.  Hopefully we can get the eyegaze part of computer hooked up this weekend with a few pages and some music for her to activate.