This is all especially problematic as Owen is Deaf and understands ASL only. If someone wants to say something to him, even without expectation of a clear response… he or she can’t. So often I see people undoubtedly with good intentions attempt to say something to Owen, but stop short. They realize he’s Deaf and simply don’t know what to do. So they rely on that pained, close-lipped half-smile to convey ‘hello’, or whatever it is they wanted to say. Awkward for everyone (except of course, for Owen, who is so used to it he probably thinks it’s a standard greeting).

So here’s something exciting I’ve stumbled on (actually, it was brought to my attention by Laurel at Bloorview – thank you Laurel) – it’s software that allows your selected avatar to communicate in ASL. It will translate on-the-fly – the user can type in an English phrase and the avatar will sign it! Brilliant. Here’s a still from a demo on SignSmith’s website – follow the link below for the full effect. Even if you think you don’t care, go see it – it’s fantastic. (You’ll need the latest Flash player.)

Now, imagine that software, in conjunction with this:

The ASUS eeePC – A teeny, tiny flash-based, Linux notebook that costs around $400. It’s small, rugged and would perform well. Limitations would be battery life, screen size (7″), memory…. but give it some time and that will all change.

Here’s a scenario: we could visit my dad in Stratford, who doesn’t know ASL. He could select an avatar that looks roughly like himself, key in a phrase, and show it to Owen. After Owen stopped giggling, he would probably, at many levels, deeply appreciate the effort.

Several days ago, Owen was kitted out with a demo wheelchair – the same one I discussed earlier in this blog. It’s called a Kids Rock dynamic wheelchair, and has a special spring-like action that engages when Owen becomes spastic or reflexive. If he thrusts (straightens at the hips while sitting), the hinge between the seat cushion and back cushion opens slightly – allowing him a bit of movement without causing instability. When he relaxes, the chair returns to its original position.

We’ve taken it home and will be trialling it for another week or so. I’ve had it with me in my place for the past week, and now his dad will try it for a week at his place. We’ll regroup at the end of the trial and decide if we like it. So far, my vote is yes. My only complaint is related to the fact that it has demo parts – the wheels are too big and Owen likes to rest his hands on them. If I don’t notice and start moving him, his hands/forearms rub on the turning wheels… potentially, highly problematic. I will order smaller wheels for the new chair, of course.

I also like that the movement doesn’t seem to interfere with his ability to access his switches. And if it ever does, the movement can be ‘turned off’ by moving a lever located at the back of the chair.

Once the trial is over, I will post another entry with our decision.

As I continue to contemplate Owen’s capacity for choice-making (and his communication partners’ capacities for offering choices), I have not ruled out other options for communication. In a previous post I mentioned that he was very successful when using a switch-activated signal, which we used for ‘reading’ a book. (I would sign the part of the story reflected on the current page. When finished, I would wait until he signaled to turn the page. He was an active participant and clearly very keen. In this case, the signal was purely auditory, which he couldn’t hear – but he understood that if he hit the switch I would turn the page.)

So, I have dug out his small but impressive collection of switches and will try some activities with him. (A switch is a means to access another device or activity – it’s like a mouse but without a rollerball or laser. It’s a button that will activate something, like a light, toy, computer, etc., and used by folks who cannot use the standard means of activation. A variety of switches and devices are pictured above.)

A bit of early success:

I connected his switch to a floor lamp – a large, paper, square-shaped thing that isn’t too intense for him to look at directly. The switch was set to ‘timer’, which means a click would turn the lamp for a pre-determined period of time and then it would shut off by itself. This setting is different from ‘latch’ (one click for on, one click for off) and ‘direct’ (press and hold for on, release for off). Each has a different function – ‘Latch’ is good for watching tv. ‘Direct’ is good for power wheelchair driving. And ‘timer’ is good for a communication device – press once and let it do its thing.

BTW – Owen uses his foot to access his switch. I used to say without hesitation that it was his right foot, but now I’m not so sure. He clearly presents his left foot every time I get the activities ready, so I’m going with that for now.

So, the lamp. He loved it. For a short time. Flicked it on several times and then grew bored, as I’m sure any 9-year-old kid would.

The next activity was much more appealing. I connected the switch to a bright LED light which I affixed to his wheelchair, positioned so he could see it clearly. (A few years ago, Ari at Bloorview attached this light to a buzzer, so that both hearing and Deaf people could register its use. I was very surprised to find it intact and still fully charged!) And then we tried the story activity again. He would press the switch when it was time to turn the page. It was touching to see him so engaged – so thrilled that he could initiate a communication that resulted in an intended action. Definite success.

So for now, I am leaving the switch available to him for extended periods of time and letting him know that if he wants my attention, he can call for me. It’s imperfect, of course. It’s likely confusing to keep changing what the signal means. I’m sure we’ll settle on something soon and stick with that. I see tons of potential for its use as both a signal and as a communication tool. We had made good progress when he was younger but had to stop due to his increasingly high tone. I’m pleased and inspired that he’s picked up where we left off.

I have been assuming all this time that independence should be the final communication goal for Owen. To be able to say anything, any time he wants, and to be understood by strangers. And as any alternative communication specialist will likely agree, independence (for Owen) will mean using a technological device. High-tech systems, which include auditory scanning, voice-output, menu-driven/switch-operated frameworks, are highly specific. There is no room for error or interpretation – a user’s output is what it is, and successful communication requires a high degree of consistency on the part of the communicator. So, that is where my energy has been focused – developing a method for Owen to express himself using a high-tech device, in order to achieve independence.

As we progressed through our meeting yesterday, this thought dawned on me: maybe independence is over-rated. I could go on about that from a number of angles, but the relevant one is this: Owen will always require complete personal care and assistance for all aspects of his life, for the rest of his life. He will also always require a skilled communication partner who signs fluently and has deep sensitivity caring for someone so physically vulnerable. And so, why would I want for him to perfect a communication system that is designed to be carried out in the absence of that person? Does he need to produce such exact expression in order for the other person to understand? If his partner gets the gist, isn’t that enough? Some might say no, and probably with good reasons. But I posit that, given Owen’s easy-going, happy-to-be-here nature, and his extreme degree of disability, his getting across a general idea would be, well, fantastic. And maybe enough.

So, low-tech. This can include use of picture symbols, objects, vocalizing, eye-gaze, gesturing, signing – anything that doesn’t require electricity. Things now get complicated for Owen, because of a number of factors. His partner cannot sign and hold pictures or picture boards at the same time. Owen cannot control his eyes well enough to hold his gaze on a picture to make a selection. Owen is unable to free his hands or arms enough to gesture. And interestingly, just like spoken language, sign language ‘disappears’ once something has been communicated – there’s nothing to hold onto, nothing to reference. (Which is why we often use pictures to represent choices.)

In the interest of keeping things simple and harnessing something Owen already does to indicate approval/acceptance/comfirmation/enjoyment etc, we’ve decided we’re going to try the following ‘system’:

Several times a day, Owen will be offered 4 concrete (as opposed to abstract) choices – 1st choice, 2nd choice, 3rd choice, 4th choice (which is always “something else”, so he has a way out.) Always in the same order, always the same choices. So perhaps for Sequence 1, the question will be “It’s playtime. What would you like to do next?” Then, the partner will give 4 options -

• 1 – book
• 2 – tv
• 3 – toy basket
• 4 – something else.

These will be referenced by the same ASL vocabulary each time, in the same order, using the usual ASL method of listing things by counting them off on the fingers. How will we know what he wants? Owen’s Occupational Therapist gave a good analogy: When we hear a waiter list the dinner specials, we wait while she rhymes them all off. Then, she repeats them more slowly – when she gets to the one we want, we interrupt and say ‘yes! that one!’. Owen can do the same – and not with words, but a distinct smile.

Owen smiles all the time – so the challenge will be for him (and his partner) to associate his smile, in that context, with having made a choice. Perhaps we can teach him to ‘unsmile’, or at least change his facial expression, for the rest of the list, the second time it’s given. Which may be easier than teaching him to actively do something he doesn’t already do.

So for now, our efforts will be decidedly low-tech. Although I have to say that, in the assessment, his switch-use was brilliant. He will continue to work on switch skills at school (more on switches in another post) – it’s a fulfilling cause-and-effect activity, and perhaps could be useful for communication – an obvious use being as a signaling device, to call for attention or assistance.

In the next few days, I will write this up and begin drafting the Master Communication Plan, kept in the ‘pages’ section of the blog website.

http://www.kidsupco.com

For Owen, expressive communication will likely require some kind of physical involvement – a gesture, a mouse-click, an eye-gaze… So in order to support him for physical movement, he needs appropriate seating – or in his case, an appropriate wheelchair. His current one (Zippie by Quickie) has been ok, but with his fluctuating tone and spasticity, he tends to break the various metal pieces, like his side laterals and headrest. He pushes so much that the metal wears away over time and eventually snaps or wears through. Through Bloorview Kids Rehab (here in Toronto), we’re going to trial a new chair that is ‘dynamic’ – it moves with him. Should help prevent breakage, and will also support him better. (Typically, once the reflexive behaviour is over, he lands in the wrong position. This chair apparently will put him back the right way.)

Here is the promotional video for the chair, about 5 minutes long: