An Actual Conversation With Maggie

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.

 

22 thoughts on “An Actual Conversation With Maggie

  • Thought I already subscribed but I guess not. Seeing her communicate is awesome!!! Seriously choked up. She is looking so much like her mommy too! Love you all!!

    • There’s a sensor that tracks her eyes, so she can use it like a mouse. She selects icons to reflect what she’d like to say. It’s pretty cool.

  • So awesome she is communicating! The video is great. My daughter got her communication device just before her 14th birthday and it has really opened up our world. To hear her heart is priceless. Having good speech partners is so important and to always believe they are communicating helps the girls success. Have your teachers try it with their eyes to feel how taxing it can be, this should reduce judgement. Calibrate the device often during your evaluation period. With travel the eye track can shift above or below the gaze. I like to test it with my own eyes. It looks like you are off to s good start.

    • Great information. We had noticed it was shifting to the left a little and weren’t sure what to do about that. Thank you for sharing. I’m happy your daughter got hers as well. It really is wonderful to be able to hear her thoughts.

  • Hi, I’m Italian and also my daughter is affeted by Rett Syndrome. Her name is Sofia and she is 5 years old.
    Please can you give me more ionformations about comunicator? Is a tablet with a system built-in? Or is a system that need an external device?
    In any case great!!!
    Mario

    • It’s a device called the PCEye Go with a Surface Tablet. It’s made by Tobii. There’s basically a usb adapter that tracks her eyes and acts as a mouse. This particular setup retails for about $5,000, but our school district actually bought it for her. There are bigger, better versions, that we’re hoping our insurance will pay for – those are $12,000-$17,000 and that we would own. Tobii and Dynavox are the two main providers of these devices, Tobii recently bought Dynavox. Hope that helps.

  • Hi,
    thanks for sharing so much of yourselves. We received a diagnosis in late January 2015 for our little girl Avianna (Ava) who had just turned two and viewing your videos and reading your blogs has been both educational and comforting.

    • Hi Rachel,
      So sorry to hear about your diagnosis. I’ll tell you what other families told me when we were first diagnosed – which is “welcome to the best family you never wanted to be a part of” – please feel free to ask any question at all. Diagnosis is difficult, and I’m sure you’re going through a thousand emotions, but it will get easier – and there’s a lot of hope that there will be treatment soon – so root for that.

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