Monday, February 10, 2014

Sickness and Communication

Years ago, the thought of Kreed communicating when he is hurt or sick was basically just a pipe dream. Something we longed for, but never thought he would obtain any time soon and we were stuck just looking for signs of pain. He has had several devices, and all had a doctor or a sickness page would basically say if he is hurt, not feeling well or which body part might hurt. He's always had these pages. We've always worked on these pages. He never once told us he wasn't feeling well.

Enter the Dynavox T10. Wait, let me back up. With his old grid based devices, Kreed could basically go to a category and there is the language for not feeling well and that was that. One category to talk about sickness or pain. Also, the categories are not specific to the situations. Take for example Proloquo2go. And I'm talking about pretty much out of the box what are the choices. Notice that "call nurse button" and "braces" are in the same category. Guarantee when Kreed was sitting in the hospital he did not need to have both those in the same category but rather one in dentist and one in hospital.
Those were a few examples of the health category. And then the body parts: 
And there is not going to a yes/no screen quickly or another category quickly. 
And now here are screenshots of the health page from Kreed's old PRC. Granted the newer one might have some extra things to say, but overall, still lacks depth and if he had that device now, he wouldn't have been able to tell us as much information. 
Basically, I find the grid based page sets a giant vocabulary set. Even the old Dynavox series 5 software fell in the same trap as these. It's basically a word bank. It does not lend itself to conversations very well. Once a child masters requesting, there isn't a whole lot of places the child can go. If you look at the research, almost all the research is focused on requesting. I often wondered why, and now since having the T10 with Compass, I understand: there really wasn't much else those devices could do unless a child could type and use word prediction. And then it's a long training of teaching the kids to put strings of words together. Which is not all that easy on today's fast paced conversations when information needs to be exchanged and the kids are already severely delayed. Also add in our kids processing time, and grid based systems are not the quickest pagesets to maneuver between and have the child consistently keep what the conversation is about in their mind.

For Kreed, with his recent hospital visit, time was of the essence. Doctors and nurses are not in your room for very long and information needs to be found quickly and conveyed quickly. And he needed a variety of choices to answer questions instead of building sentences each and every time. The variety of choices also lends to him being able to convey more fully his thoughts.

Okay, NOW enter the Dynavox T10. First, some screenshots.

First Kreed can immediately tell me how he feels in his quick phrases which he often does now- he will say I don't feel well, he is uncomfortable or something hurts me- this prompts me to ask him more questions. 
He can also tell me how he feels in "my needs" 
And finally in his actual doctor page there are many options:
AND THEN, you hit topic words and it opens up even more words associated with pain or sickness: 
(There are four more pages of screenshots for this one category but I didn't want to post all of them!)
THEN, I made two pages so that Kreed could talk even quicker when a doctor came in the room:

Now, first of all, I feel even the picture quality is far superior with the T10 with Compass. Kreed could tell us if he didn't feel well, the part of his body, he could ask the doctor questions, he could respond in a variety of ways to their questions. Furthermore out of the box it had most things Kreed would come across in the hospital! I didn't have to do much extra programming other than two tab pages to put some of the things he was saying in one location for even faster communication. That took all of two minutes to make. Kreed had fast access to a huge vocabulary, questions, responses, comments and requests. Also right there on the right are his categories easily accessible and on the left, quick phrases, quick fire or even the keyboard. Everything lends itself to quickly communicating.

Here is the video of Kreed talking to his nurse at the hospital, also with myself and his mom asking questions as well so he understands. 

Here he is talking to me about how he is feeling:

This kind of communication we never thought was possible, at least in the current future or really I didn't know he would be able to be this communicative before he learned how to type independently. His ability to move between phrases, answer yes/no and answer questions directly has changed his life. And the navigation and the depth of language in the Dynavox T10 has made this possible.

I think the old consensus was that kids should build their language word by word to make the sentences and fully communicate with devices. Unfortunately, this is not always the reality with out kids who have multiple needs from severely delayed or non-existent language (but a good receptive repertoire), paired with the speed at which conversations need to happen, plus the processing time the kids need to understand what is being said and what they need to say back. With all those things taken into account- the days of building those sentences from core words or brick by brick are limited. I think more than anything, Kreed has taught us the need for outside the box thinking when it  comes to teaching nonverbal kids how to communicate.

Kreed has had the T10 for about 3-4 months, and in those three to four months he has gone from a kid who could ONLY request and answer basic questions to a kid who can ask, answer and comment on questions, make his own comments, type out some of his thoughts, answer yes/no questions independently and talk about himself and his own body. Just THREE MONTHS. He had the grid based devices for FOUR YEARS. I have now made it my duty to study these devices and try to figure out the differences so that other families can be as effective. Kreed also used to tantrum horribly when he couldn't get what he wanted. Basically if he couldn't have what he wanted, he had no other way to communicate his needs and thus a meltdown. Now, he has like a thousand ways to ask for things and our posting of videos of his arguments have become epic and well liked. Because he chooses words now instead of aggression and that is a miracle to us as well.

Here is a short history on his use of devices. There is such a difference these days. We tried in vain for years to teach Kreed to build each word of the sentence, but eventually his attention and the pace of the conversation just died. With his T10, the conversation stays alive, Kreed hears all the words being asked and he will fill in nouns or verbs as needed and he has so much more language at his fingertips.

Take for instance this video from a year ago, although Kreed did not tantrum on this video, he did shortly after. Notice the language in this video.

And here is his latest progress with arguments instead of tantrums, I think it's safe to say there is a dramatic difference in teh words that he can use to work through problems:

I am thrilled there are more opportunities for devices for kids of all ages. However, I urge families not to get complacent in thinking particular devices are the be all and end all. Do not be okay with your child only requesting but never moving past that. There is more available. There is the Dynavox T10 or Dynavox Compass on the ipad. That is the only system I have found that thinks differently. Although they offer a grid based as part of it, they still have the flat navigation to move through things. But in particular I wish I could shake hands with the people who thought of the NavBar pageset because it is revolutionary and different and I have found, more how our kids think. It solved the problems of kids not being able to communicate fast enough and effectively and more importantly allowing the kids and adults to have a voice DURING conversation.

Kreed's hospital visit proved that to me more than ever as he was able to talk about a variety of subjects with ease and shocked everyone. At the end of his stay, all the doctors were communicating directly with him, as well as the nursing staff.

To me, it's incredible. To him, he has found his voice.