Communication Devices??

iVillage Member
Registered: 11-09-2006
Communication Devices??
4
Thu, 11-16-2006 - 2:54pm
My DD has severe CP. She is almost 14 yrs old. We are trying to find ideas on how to help her become more independent and unfortunately her speech is a big problem. We are in the process of discussing a communication device, Dynavox. I was just wondering if anyone out there has heard of them or has any experience with it? Or possibly any advice or opinions on how to help my DD be able to communicate better. Most communication devices I have had experience with so far have been either too slow going... you can't really use them for real life conversations (which is what she is wanting) without being able to type everything into it, plus we really need something to work with being able to participate more in school work and classes. She is unable to type (hands will not steady enough for this) and switch scanning tends to be too slow and frustrating for her.

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iVillage Member
Registered: 10-21-2003
Thu, 11-16-2006 - 3:57pm

I'm sorry that I cannot be much help right now. We are in the same situation though. My DDis almost 9 with athetoid CP and is non verbal as well. And like your DD she has limited use with herhands. She accesses switch scanning with her head (or now her knee) she also gets frustrated with the wait times. I haven't come across anyone who has the same issues as us. Nice to meet you.

With my DD this year theyhave added word prediction on her on screen keyboard, and now she finds it a little faster because she can type one or two letters using scanning, and then let it scan down to the appropriate word on her prediction list. This cuts her wait time considerably. She uses this on screen keyboard for all of her school work, spelling tests etc. To "talk" she uses speaking dynamically pro but this is hooked to a stationary computer so she is stuck in one spot. Hopefully later on she can use a laptop mounted onto her wheelchair.

Dynavox, while we haven't used it, seems to be a popular choice as a device. There are some really complex devices out there, there is one that I know of that costs thousands of $$. I'm not sure of the name, we looked at it with her speech and language and assistive technologist a few years ago (as our ultimate wish list item.LOL). Its quite compact (for all it does)and has an extensive program. But I'm not sure of how it would be without the dexterity of being able to finger touch reliably. If I remember the name I'll post it.

iVillage Member
Registered: 11-09-2006
Thu, 11-16-2006 - 8:53pm

You are right about the many devices. The one she currently has that is a laptop cost over $15,000 and really it does not work well for us. Here is a link to it although hers is set up with Windows 98 as the main screen. http://www.words-plus.com/website/products/syst/f2k_extreme_tb.htm With this system we had EZ Keys put on it which allowed for word prediction, word processor, and scanning all in one. But it still didn't help all that well. It ended up taking my DD twice as long to do any type of work for school.

I am hoping when the sales rep comes to the meeting on the 1st, I will get a lot of my answers about how well I can set up the Dynavox system to do exactly what my DD and I would like it to, and if it can't then maybe they will have ideas on what we can use.

Is there a reason why you don't have something that your DD can use that is mounted to the wheelchair right now?

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iVillage Member
Registered: 10-21-2003
Thu, 11-16-2006 - 9:46pm

The reason that she doesn't have something right now is because she is resisting the technology. She finds it much faster (and more reliable) to use eyegaze. What is happening is that she will look at the anser to a question 3 or 4 times before the scanning catches up to it, and by then she has lost interest because she (in her mind) has already answered it. Plus being a little younger her access point has changed alot as she grows. In the past year we have had a bout of seizures which required a medication change and then this new medication doesn't help to tone down the athetoid movements of her arms and legs (they are worse than theyhave EVER been), so everything gets much harder to analyze, to see how she would do, with each device.
So far she is doing well in school, she follows the same curriculum and just answers less questions for a test (if the rest of the class has 10 she has 6) to allow for the time of scanning. She has plenty of friends who understand her eye gaze and she is content with that. Like me, she is stubborn and until she finds it inconvenient to use eye gaze, she'll stay with that. She adapts quickly when she thinks she will be left behind.
I'm very proud of the fact that she was just tested by speech and language and they determined that she has a vocabulary of a teenager...cognitively speaking. She understands concepts and can pick out words that most 14-15 year olds comprehend. I guess that comes from having to listen alot without just speaking her mind over someone else.LOL

The school really tried to push the technology on her last year and then when she couldn't meet the outcomes (only on the computer) as required by her IPP, they tried to "dumb"(for want of a better term) down her curriculum. I made them test her using eye gaze and she answered enough questions that they found out that she did understand the concepts, and it was the push for technology that was holding her back. This year we are focusing less on the computer, and technology and getting her to only answer in part with those, the rest of the time she uses eye gaze. Now they are having much more success with her wanting to use the technology, she is getting instantsuccess with the eye gaze and good success with the computer. So we are on the slow and sure methodof technology right now. LOL

iVillage Member
Registered: 11-09-2006
Thu, 11-16-2006 - 11:09pm
Wow! Your dd is really amazing! Just like my DD. We also began using what was more reliable and faster for her too. And most of the time that was with some verbal speech although it is difficult to understand and pointing to a letter chart I made her on paper. I can definitely understand the pushing of technology. Our public schools did it to my DD when she was in 3rd - 5th. Most of her IEP's dealt with doing more with the computer system than with actual school work and lessons. But now I homeschool her along with 3 of my other children, so we get to work with what we want to and mostly concentrate on schooling not production from the computer/communication system she has. She does well in school, just has it really hard when it comes to being able to do some of the work since she really can't do it herself. We still have so many bugs to work out on finding the right curriculum and best method of production that works best for her. But back to the topic... She is now pushing for something more so she can communicate better with friends. Of course, I am also now pushing too since school work is now getting more and more indepth, and I want to make sure she does know certain things without being prompted by me or others. Hopefully we will eventually find the right thing.

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