The (communication) revolution will not be televised…

As I’ve mentioned several times, we are launching a communication revolution here. And I couldn’t be more excited.

And in light of all the bad news we’ve had lately, its good to be able to focus on something positive.

First, let me give you a little background into Miss Z’s communication and what we want to achieve with augmented and alternative communication (AAC).

Miss Z is non-verbal. She makes lots of vowel sound noises (mainly ‘aaaah’ and ‘ooowah’), but doesn’t articulate other sounds. This doesn’t mean she isn’t able to communicate – in fact, she can be surprisingly effective at getting her point across. As I regularly assure therapists, nurses and doctors, if she doesn’t like something, she will lose no time in telling you very clearly. A small few of us (who spend a lot of time with her) can also understand when she’s happy, very happy, bored, in pain or frustrated, mainly through a combination of the tone of her voice and her actions (arm waving and head shaking are happy signs, ear scratching and hair-pulling mean unhappy).

Miss Z also has very limited use of her hands. She can’t independently isolate one finger from the rest (for example pointing or giving a ‘thumbs up’) and can really only do big, gross motor movements. For this reason, sign language isn’t very successful for her. She is able to do a few basic signs and understands several more if she is doing body signing with a therapist (where they do the sign together), but it is never going to be her easiest or preferred mode of communication.

So, this is where our Communication Revolution begins. We need to find a system of communication that is right for Miss Z.

Fortunately, Miss Z was born at the right time. Even less than 10 years ago, there was very little out there to assist with communication, apart from some specially-made communication devices that were prohibitively expensive or home-made communication books (essentially a book with a bunch of words, pictures or the alphabet that a person would point to). Then the iPad came along and suddenly there was an affordable piece of technology that could assist communication – and a whole bunch of programmers writing apps to do just that. Of course, the iPad isn’t the only new means of communication, but it is a good place to start.

So, for her fourth birthday, Miss Z got an iPad and we are hoping that she will use it to communicate.

This is the start of a revolution that could change Miss Z’s life. And that is not in any way an exaggeration. Until now, she has been unable to communicate almost anything with the outside world. For the past four years, her main mode of communication has been crying when she is unhappy / uncomfortable / in pain / bored / frustrated. Essentially the level of communication of a baby. But she’s not a baby any more – she’s four years old – and it must be unspeakably frustrating to not be able to communicate even basic requests such as “I’m cold” or “I’m hungry”. And I know that she has a lot more to say than just that. I have no doubt she wants to tell her sister to move from in front of her when she’s watching cartoons. She wants to tell us she’s bored sitting in her beanbag and would rather roll on the floor or go for a walk.  She wants to say that her back brace is pinching or her nose itches. And she definitely wants to tell the doctors and nurses a few words that probably don’t appear on children’s communication books or devices…

By finding the best means for her to communicate, it will open up the whole world to her.

Here is what I’d like to be able to write:

In the two months since Miss Z got her iPad, an overnight revolution has occurred. We purchased an expensive and extensive AAC app that she swiftly mastered and has been communicating with us in increasingly complex ways ever since. It took her very little time to learn how to use the app and she now is better at it than we are. We take it with us everywhere and she is constantly using it to express herself. She has learned to isolate her pointer finger and make selections on the screen swiftly and easily. Using her iPad as a communication device is the best decision we’ve ever made. 

But here is what actually happened:

It is a slow process.

We bought the iPad. I set it up and downloaded Miss Z’s favourite songs and cause-and-effect apps on it. There were then several weeks where we used the iPad mainly to play music for Miss Z.

Then we had an appointment with her Speech Pathologist (speechie). He and I basically spent the hour playing around on the app store and debating the pros and cons of several different apps. There was one that would be ideal, but neither of us could get it to record words, and without sound, it was less motivating to Miss Z. We finally decided on an app that looked appropriate for Miss Z, called Go Talk,  and downloaded the (limited) free version of it.

I played around with it, adding some photos and words. And I played around with encouraging Miss Z to make selections from it. She wasn’t particularly interested.

Then we had another appointment with the speechie and he changed the set-up. On the free version, we only have five pages to use. The speechie prioritized things that will motivate Miss Z, so we selected four activities: bouncing, swinging, listening to music and watching tv.

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On the second page, we gave her the opportunity to refine some of her choices. So, if she was bouncing or swinging, she could ask to: go fast, go slow, have more of the activity, or stop.

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If she was listening to music, she could select which song she wanted to listen to – the app is great in that we were able to set up the music to play as soon as she touches the button.

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And if she wanted to watch television, she could select which programme she wanted to watch. At first we had to let her make a selection and then find it on the tv, but I worked out how to immediately play brief video clips when she makes a selection. Instant results are always best.

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The final page has her family (including her au pair!). Although we don’t use this page much at home at the moment, they discuss families at school, so I’m hopeful she will use it more there. In fact, I’ve provided school with a huge number of photos so they can set up some picture boards for her.

Our first time trying the app, we put Miss Z on the trampoline and encouraged her to choose how fast or slow she bounced. It was something of a challenge to position her so that she had an arm free to touch the iPad, but was still comfortable on the trampoline. There was a lot of encouragement, a bit of help, and a few moderate successes (I treat everything as intentional, even though sometimes she might be touching the screen accidentally).

Since she fractured her leg, the bouncing and swinging are out, so we’ve focused on getting her to choose music and tv shows. Sometimes she seems to choose something very intentionally. But most of the time, she either swipes randomly at the screen or ignores it completely.

We have also started trying to get her to make yes/no decisions through the use of cards and a different app on her iPad. “Do you want to listen to music, yes or no?” Again, we are usually lucky if she actually gives us an answer, but we just need to keep persevering. Even being able to communicate yes and no will give her a greater say in her life.

yes-no-screenshot

Miss Z has dyspraxia, which means the messages from her brain aren’t transmitted properly to her body, affecting her ability to move. This also means it takes a considerable effort to strike the right square on her iPad. And it can take time. And sometimes her arm or hand needs support to help her to do it.

Today, we saw a faciliated communication specialist who spent a very, very long time waiting for Miss Z to get her muscles organised to be able to reach out and answer when he asked her a question. He helped her by holding her hand with her index finger extended, helping her to control her arm, but importantly leaving her to initiate if and where she points. Our communication revolution is not going to be rushed – it will arrive at the pace of a snail. Patience is a necessity.

The process of holding or touching a person so they can focus better to communicate is called facilitated communication. It is a somewhat controversial means of AAC, because the person doing the holding or touching, if not trained properly, can influence what is being said by directing the speaker to particular words. However, it can also help people to communicate who might not be able to do so on their own. If Miss Z ends up using an iPad to communicate, I think she will certainly need facilitated communication because her dyspraxia and her tendency to get distracted by repetitive actions mean communicating completely on her own would be very challenging – particularly at first.

But, it might also emerge that the iPad and facilitated communication isn’t the best communication tool for her. Another form of AAC is eye gaze technology, where the user looks at a picture or word, instead of pointing to it, and the computer tracks their eye movements. This technology has been made famous by Stephen Hawking, but in recent years (who has his eye gaze devices made specially for him by Intel) has become increasingly more accessible to everyone. So, the facilitated communication specialist we saw today is going to put us in touch with an eye gaze specialist, so that we can also give that a try – which quite frankly, would be awesome.

I have no idea at this point which approach will work better for Miss Z. So, the plan is to test out both systems, consult with specialists on both, make a decision, and then give it a go. In the end, we may also find that there is no ONE system that works best for Miss Z, but we will instead use a combination of different approaches.

So, the great communication revolution isn’t starting with a bang, but rather a long, slow consultation process, a lot of trial and error, and even more patience. But I am determined we will get there in the end – and excited about the process. The revolution may not be televised, but as it progresses, you can be assured there will be plenty of video clips on here to watch!

And in the meantime, have a look at how eye gaze technology works:

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