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Tuesday, April 30, 2013

Life and AAC

Watching Julia's dance competition
I wrote a glowing post (on Thursday) of how Emma is doing so great with Evie at home and school and that very same day she came home with a note saying they want to talk about ways we can get her to use Evie more at school because they didn't think it was frequent enough.  I guess the note did take the wind a bit out of my sails for a moment before I realized the likely cause is musical therapists rather than Emma's ability to use her device.  I know how far she has come in using Evie in the last 6 months.  But still......comments like that might make me waiver for a moment.

I immediately recommitted to noticing how she used the device over her 3 days off - Friday, Sat., Sun.

On Friday - immediately after breakfast finished up and she finished on the potty - I asked Emma what she wanted to do.  She told me 3x she wanted to "eat".  This really confused me since she had just eaten her typical quantity of breakfast and I wanted to get on with the day.  Our method to using Evie is to reinforce Emma's request by giving her what she asks for when possible and since we didn't have much planned I went ahead and brought out some more food for her to eat.  She happily gobbled it all down.  My mind was blown!  I mean, I thought for sure she was done eating and ready for fun and she asked to eat by mistake.  No mistake, she wanted more to eat and I'm so glad I listened.  Then she asked for a drink and downed an entire cup.

Watching the crowds at the competition
Ummm....I guess I can't always read her mind.  Good thing we have Evie!  She then asked to "go" "outside" "in" "bike".  So she went for a bike ride and loved every minute of it.  She also used the device as she would typically for the rest of the day.

On Saturday we visited my Aunt at a nursing home and while in the halls she used Evie a few times.  The halls were very busy and it surprised me to hear her talk - and unprompted at that!  She only said a couple of things but they were appropriate and it is very good progress for her to use it in public.  

Sunday was busy and Emma didn't have as much access to Evie as she typically would.  Some days are like that - the fact is life is life.  Raising Emma is a marathon not a sprint and one day without a lot of access isn't life changing yet.  She isn't a consistent enough user of Evie yet to make her miss it and we are still able to use her Yes/No answers and her eye gaze to communicate effectively.  The simple fact is that some of the low tech communication methods are just as important as the high tech method because they allow us to communicate regardless of the environment or situation.  I believe not having access to Evie at all times will be a big issue at some point in the future and I am ever hopeful that will happen sooner rather than later.  Once that happens we will try our best to not let her go a good portion of a day without her device.

Emma's use of Evie is getting both more frequent and accurate indeed.  She uses it - unprompted - more and more at home.  I know she will eventually transfer this skill to school like she does all her other skills.  I'm more than willing to wait.  

3 Comments from readers:

Susan swanner said...

I still keep going back and forth to this post and going to the ECO website to show the therapists what i am talking about. I keep telling them "you know, the Evie, you know what the Evie is right" after a few crazy looks i remember that it i not actually called an "Evie" so i have to go to your blog (hey it must be giving your blog a lot more "hits" on the internet lately), then go to the website to show what i am talking about. Most of the therapists down here have never heard of an EVO2, down here they push something called a Dynovox....reminds me of a dinosaur if you ask me, not something one would want in a computer. I am kind of leaning to just getting an I-pad, but am worried that i would be jipping Tracy of the eye gaze feature....what to do.....what to do? which is why i have not done anything yet! Made rash decisions in the past and also have let therapist push me into a particular thing and got stuck with something that i could not use for years until insurance let us make another choice, don't want to make that mistake again. Tracy will be turning 6 in September, but we homeschool so even though she is just barely "school age" right now we are just doing lots of worksheets (she is global spastic and non-verbal, so she needs much help), we do a lot of reading, listening to books on CDs, and today i was told by the librarian about a WONDERFUL program called "Tumble Books" that is free through the library system and it is a human voice reading books out loud while turning the page on the computer. Always ready to learn more about anything that might help Tracy. Thank you for teaching me about "Evie".

Susan swanner said...

I still keep going back and forth to this post and going to the ECO website to show the therapists what i am talking about. I keep telling them "you know, the Evie, you know what the Evie is right" after a few crazy looks i remember that it i not actually called an "Evie" so i have to go to your blog (hey it must be giving your blog a lot more "hits" on the internet lately), then go to the website to show what i am talking about. Most of the therapists down here have never heard of an EVO2, down here they push something called a Dynovox....reminds me of a dinosaur if you ask me, not something one would want in a computer. I am kind of leaning to just getting an I-pad, but am worried that i would be jipping Tracy of the eye gaze feature....what to do.....what to do? which is why i have not done anything yet! Made rash decisions in the past and also have let therapist push me into a particular thing and got stuck with something that i could not use for years until insurance let us make another choice, don't want to make that mistake again. Tracy will be turning 6 in September, but we homeschool so even though she is just barely "school age" right now we are just doing lots of worksheets (she is global spastic and non-verbal, so she needs much help), we do a lot of reading, listening to books on CDs, and today i was told by the librarian about a WONDERFUL program called "Tumble Books" that is free through the library system and it is a human voice reading books out loud while turning the page on the computer. Always ready to learn more about anything that might help Tracy. Thank you for teaching me about "Evie".
P.S. I have tried to make "connections" for Tracy with other children who have disabilities and even tried for many moths to get a support group started. I guess i can understand that everybody is so busy these days and people are so private and afraid of what kind of "kook" might be trying to wriggle their way in, i get that. Tracy does have some non challenged friends, which i greatly encourage for any ability challenged person, but i believe in balance in most areas of life, friends included. So i was wondering, would you mind terribly, or think it totally weird if we asked to be you all to be our friend.

Kristina said...

Hi, Susan.

Sure - we would love to be friends. Do you live near PA by any chance? There are some good support groups here I could invite you to if you are local. I'm thinking you might not be, though, based on your comments.

I do know of the Dynavox. We tried it with Emma but their Eyegaze system didn't work so well because Emma's head control wasn't good enough for it. If you want to see it in action go to prayfornathan.org as he uses the eyegaze Dynavox with good results. Emma trialed the Dynavox, the Tobii and the Eco2 before we made our decision. We worked with her school SLP for about 9 months before we made a decision. The Tobii and the Eco2 use the same eye gaze device and it is really forgiving for children with some head control issues. It was a hard decision between the Tobii and Eco2, but Emma made the decision by actually liking the Eco2 better so she used it much more.

If you want to trial the Eco2, go to the prc website prentrom.com and call them and ask how you could get someone to come to your house to trial with with Tracy. My experience so far is that they are fabulous to work with.

My email is kswhite2 (at) gmail (dot) com. Feel free to email me if you want.