Wednesday, April 24, 2013

Something to say - AAC Update

Long post alert!  I've been asked by a few people recently to update on Emma's progress with her talker so I'm making this pretty detailed for their benefit - sorry to those who would be happy with the cliffs notes version.

Recently Emma has increased her use of Evie.  It's been about 6 months since we received and focused on using it for communication and I'm happy to update that she is starting to engage with people unprompted and is stringing together several words at a time on her own.  This is HUGE.  She doesn't do it all the time but when she does my breath catches.  In-depth communication is something I want for Emma so badly.

Emma seems to know that 90% of communication is non-verbal and she rocks the world of non-verbal communication.  The work of using a communication system generally doesn't seem worth her effort when she is with me or Chris since we can read her like a book and figure out what she wants relatively easily.  With other people, too, she can get most of her wants/needs met through her body language and she is so darn cute that people bend over backwards to try and figure out what she wants and give it to her.

I feel that we are blessed that she is so good at non-verbal communication but her wants/needs are getting more complicated as she gets older and having a more direct mode of communication will help minimize some of the frustration she is starting to encounter.

Her screen is still set up with the core vocabulary on the main page with some of the vocabulary hidden.  This gives her a chance to train her eyes for accuracy in communication and also gives her many of the words that she, as a pre-schooler, would use on a daily basis.  She is great at using the eat and drink core words.  In the fringe vocabulary on the activity row for these we have items such as ice cream, yogurt, pudding, cracker and milk, smoothie, juice.  I find that Emma is often stringing the two words together - for example, Eat Pudding - rather than just selecting eat.  She is getting really good at this one because pudding is a favorite food of her and she knows if she asks for pudding there is about a 50% chance she will get it and be able to skip the main meal if that is what I'm feeding her.  The chance of getting pudding gets closer to 100% if she says Eat Pudding Please.  My girl likes her dessert!

A few things Emma is doing now is saying Please a lot.  She is quite polite and she uses is appropriately.  For example, she might say Play Please or Drink Please.  If she seems to want something and we can't/won't give it to her - for example, she wants a drink but it's not a time when we can stop for a drink and so I tell her she will have to wait a bit - she will then say Please a couple of times and smile.  I love this.

In the Need activity row we have Hug, Kiss and a few others.  Sometimes when she is upset she will say Need Hug or Need Kiss.  I melt when this happens.  Seriously melt.  And of course she gets more hugs and kisses than the million she is showered with every day anyway just because she is so very loved.

We programmed in a few pages for school.  There is a circle time page that offers her an opportunity to engage with her friends and make some selections for their circle time routine.  We also added a PT/OT page where she can select what activity she wants to do and then offers her options for the activity.  There are a lot of her favorite activities on the screen so it gives her quite a few options and gives her a lot more control over her daily activity.  For example, she can choose Fingerpaint and then she has access to the colors menu so she can choose what color(s) she wants to use during the activity.

I've been told this has increased her interest and focus during the therapy session.  This makes perfect sense because Emma is picking what activity she wants to do so it follows that she would be interested and attend and participate better than a typical choice between two activities a therapist might present her when she might not want to do either one.  It also gives her a chance to tell them when she is done by selecting Stop and then she can pick another activity.  Her attention span is definitely that of a 5 year old!  What a great thing this is because sometimes therapists think 20 min. or more is the right amount of time for an activity and when Emma loses interest after 10 min. they could try and keep bringing her focus back and then say she lacks focus.  Not that this is a knock on anyone but it could happen.  Having access to a lot of choices on the one screen gives Emma the opportunity to communicate that she isn't just staring off into space but that she wants to Stop that activity and select what other one she wants to do.  I have a feeling that this is one of the key reasons Emma is finding the power in using Evie.  

On occasion Emma has come home with notes from school saying she has strung two words together for them during school speech sessions and classroom activities.  She has said Hello Friends during circle time and sometimes selects her morning attendance color choice with Evie rather than the laminated cards.  She also likes to play dress-up with the dolls and often selects the item from her screen to use on the dolls.

I think increased access to Evie is critical at this point and Emma now has access to Evie most of the school day.  When she is in the bicycle and maybe during some activity at gym she doesn't have it because it doesn't makes sense but otherwise she does have access to Evie and her wonderful aide models the use of Evie at all times.  We are also trying to use it more at home and in public.

Yesterday her private PT came out to get her and she said Hi.  When I asked her if she was ready to go back and play she said Go.  This was in the waiting room at the hospital which is pretty busy and kids are running about.  The fact that Emma looked at her talker and engaged in the conversation is a BIG BIG thing to me.  It might not happen again for a while, but I know she has the potential to do this more and more as we continue to model the conversations on her talker for her to learn.

Last Friday she was at a school for an evaluation and it was time to eat.  Her food was in the car so Chris went out to get it.  She said Want Daddy Eat.  She knew Chris went out to the car to get the food and she wanted him back so she could eat.  So great to know she put our entire conversation together and she wanted to chime in on it so without any prompting she strung 3 words together in a matter of seconds!  Just a month ago that could have taken about 15 minutes to get her to do with lots of prompting and likely wouldn't have happened at all without prompting.  Wowza!

We did make a change to the system on "dwell" time.  That is the length of time Emma has to look at the icon before it selects/speaks it.  It is now at 0.4 seconds, down from 0.5 seconds.  She was frustrated having to look at the icon so long and often took her eye gaze away before the 0.5 seconds were up.  That sounds like such a short period of time but it isn't.  It's hard.  I have tried it and it requires a lot of focus and energy and it's hard for me.  I realized that Emma is actually much better at using the device with eye gaze than me and it is humbling to realize that - I don't think I gave Emma enough credit on how much work she is doing to communicate.  Once we changed the dwell time to 0.4 seconds she really took off with talking and even started stringing 3 words together on occasion.  The con to this short dwell time is that she sometimes selects the next item right away in that spot, too.  It's hard to describe, but some screens are for one selection and once she makes it then it moves to other choices and there could be a choice right where she was looking and then she mistakenly selects that one.  Does that make sense?  The frequency of this happening is quite rare overall so we are willing to deal with it for the moment.

It seems like the 0.4 seconds is the right setting at this time.  It does increase the chance she might say something she didn't mean, but when it happens she usually tries to correct herself.  This shows me that there is just so much going on in her head and I can't wait to learn more about what she is thinking.  I can't wait to learn what questions she will have, what jokes or teasing she will come out with, etc.

As Emma's use of Evie starts to increase so has her vocalizations.  She is saying nonsense sometimes.  It's wonderful!  I have no idea what she is saying but she is able to get her breath together enough to string together a bunch of jibber jabber.  And she plays with her voice high and low now.  Sometimes she sings in the car with the music.  And sometimes she is making word approximations.  She says blue or red if we are working with colors.  She says yeah when she wants.  Her speech therapist notes her increase in vocalizations and word approximations, too, so it isn't just me and wishful thinking.  It has been said that use of AAC increases vocal/verbal skills in children and this certainly seems to be the case for Emma.

Emma is starting to communicate more and more with Evie.  We have our ups and downs on when she will use it because it is hard to use an eye gaze communication system or any other alternative to verbal communication.  And she is only 5 years old - she's a baby really.  She has lots of therapies each day and everything requires her to work hard and then there is the extra energy she has to funnel to communication and eating.  Despite all of this she seems to be realizing the power Evie will give her over her own life and is choosing more frequently to engage with others through Evie in addition to her body language.

Our Emma.  She is amazing.  She inspires me.  I am humbled by the way she radiates happiness and smiles every day despite her many challenges.  How lucky we are to have our little sunshine in our lives.

Here is ~4 min. video of Emma using Evie this morning.  She was nice and humored me when I told her I wanted to get a video of her using it to share with others.  Usually Emma clams up when a camera comes out but this time she did say quite a bit.  Almost all of the talk on Evie came from Emma except a couple of times when you see me use my finger to select a choice.  For the In selection when Emma chose crawler I focused a bit on the options because they are new and Emma is still learning that row and the icons are rather hard to make out.  It's hard to listen to myself on this video so please go easy on me if you make any comments ;-)

I know Emma is blinking a lot in the video - she had only just gotten her CIs on and it takes a bit of time for her to warm up to them in the morning.  I could comment more on this, but I won't other than to say that she was on the program she uses after her CI have been on for about 30 minutes rather than the program for the first 30 minutes.  Just know that I have the blinking issue handled.

2 Comments from readers:

Anonymous said...

Hooray for Emma. MiMom loved your efforts with Evie. Keep up the good work. Mommy deserves some credit too for helping you learn to use this tool.

Luv ya - #1 MiMom

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