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.