Owen had his communications assessment meeting yesterday, at Bloorview Kids Rehab, and it was fascinating. It will likely take several posts to distill it all – but I’ll start with the most compelling stuff.
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.