Friday, February 14, 2014

Just Do It

Linda Burkhart, the wonderful woman who has trained us to use the PODD, told me a month or so ago about a version of the PODD that Gayle Porter (the creator of PODD) took a year to create for use on a high tech device, such as Lu's Tobii. It has been created in a different software than what I am used to using on the Tobii. The new software is called Grid2 and I am learning what I need to learn to use it. You can download a 60 day trial version of the things you need to see how it works for you. Visit this link:     What you will need to download is: a trial version of the Grid 2 software, a trial version of the PODD grid set you want to use, and a trial version of a license to use Mayer Johnson's PCS symbols (having Boardmaker will not help you).  We have been using the trial version for about a month now and it has been amazing! And, the Intermediate Unit has purchased the software for us to use, we are just waiting for it to arrive, so that's an option to keep in mind.  Here is a link to where we purchased the three pieces of software that we needed in a bundle:
Just to clarify, when I say, "new version", it is still the PODD! It is just a little bit different, and way more efficient than the homemade version people might be using of the PODD on the Tobii.

And here are some awesome things Lu has said with the Grid 2 version of the PODD on her Tobii:

Let's go, in the car, visit, pappy"

"I don't want to do it, let's do something else"

"I want, our, garden, yummy"

"Lucy, yours, play, music, loud, yours, loud, song". I asked her if she wanted me to play music on my iPad for her and she said yes. I asked her if she wanted to hear our favorite song, which is "I'm Yours" by Jason Mraz and she said yes with a big smile and squeal!

"Have, pain, my, tummy, tired, I don't like it" she said this at supper last night. I think she was just full, but we vented her and she seemed ok, but wow! That was like a sentence! 

I have a confession to make: over the summer, the paper book and I had a falling out. I have finally come to realize it was not the book's fault, or my fault, or Lu's fault. It was just stupid Rett Syndrome's fault, as usual. I have mentioned that Lucy had a summer with a lot of changes. Her tone increased quite a bit, so she has become more stiff. She developed some dystonia in her mouth, and head, and neck which causes her to move and sit differently. She started hyperventilating, and now it has become breath holding. These are all common symptoms of Rett, I realize now. At the time, we were frantic about what was happening to her, and why was it all happening at one time. It was like she was under attack, and I guess really she was. 

So, we didn't have her Tobii yet and all of these changes were making things very difficult for Lu to move her body in the ways she was used to. I am sure she was also confused and terrified, as we were just watching her, I can't imagine what it felt like to be her. So, we still carried the book everywhere, but Lu used it very little. Occasionally she was able to get something out. One time it was that it was too hard, and she wanted to do something else. Quite honestly, I was just so mad and confused, I didn't really promote the book's use like I have always done in the past. I kind of acted like it was a jerk that had betrayed us, when in reality it was of course Rett Syndrome that was the jerk, because it always is.

So, fast forward 6 months or so. We have the Tobii, it's great, but Lu is most definitely not relaying messages with the ease and fluency that she did with her paper book on the homemade PODD that we have on the Tobii. While talking with Linda about the new Grid 2 software, she suggested that I add a button to Lu's Tobii where she can ask to use her book. And low and behold, Lu wants to use her book! She does still love it just like she always has, but now she can choose between the Tobii or her book and she is doing great! 

A second important thing I have discovered is that she and I have both adjusted to what her body does now, and she can do her yes and no head movements just like before...well, it isn't just like before exactly. It takes longer, her yes needs some practice, but she's doing it and I understand now that while it looks difficult for her, as it did back in the summer, it's just how it is now, and she still loves using the book, and she wants to use it, and tells me so often.  I just forgot to "Be Zen".

Here are some awesome things she has said with her book:
 "I think it's, you, fun, not, school"

"I want, want, hug, it's about now"

"Let's go, in the car, you, me, can't, it's about now, I love you." She said this on a snowy day when we had been planning to go to the library, but it was too bad out!

Earlier this week her slp was finishing up their session and Lu said she wanted to use her book, and she told Roxann, "Goodbye" 

The final thing I want to say goes back to the title of this post, "Just Do It". I see people post often about just not knowing what to do with the PODD, it's not working for them, they need to learn it better, etc... My piece of advice on how to be successful with the PODD is to just do it. Anyone who has been trained in it officially has been trained by Linda, and you just need to do what she says. That is why Lucy succeeds, because I went to the training, listened to what she said to do, and we do it. As I have just confessed, we have had bumps and set backs along the way, but nothing and nobody is perfect. When Dr. Sasha said this would work with Lu, I did not doubt her. I personally believe that if Dr. Sasha says something, then it must be true, so I went to the training with that mindset. And then after being trained by Linda and learning about Gayle Porter, I have come to have the same confidence in them: if Linda and Gayle say it, it must be true. 

The PODD is Lucy's language and it must be with her, and available to her at all times, whether it is in the form of the Tobii or the paper book, or both. She NEEDS to know that she can tell me something and that it is important to us to hear her. She NEEDS to know that we believe she has things to say, and that we believe the PODD is the best way for her to say them. If you don't believe that, and maybe some people don't, then it will not work well for you, just like it wasn't working for us when I lost faith in it. But, Lucy has told us such amazing things using the PODD as her language, that I do believe it is best for her. 

It just makes every day so rewarding for all of us when she can talk to us. Yesterday she asked for mustard on her cheese at snack. At supper, I was giving her some tiramisu for dessert, but was not having any myself because I hadn't eaten anything yet, and she said she wanted to use her book, and said, "we have to share", and then "more, please"! What a sweetie and manners too! So, the PODD has changed our lives and continues to do so, because we just do it. We just do what Linda taught us, and it works. And Lucy can tell anyone she wants, anything she wants, anytime she wants.

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