(May 2011)  Before you continue, you should know that Owen passed away last October.  I am leaving the original page contents up so that older posts still have some context.

Thank you for visiting…

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Deaf, with cerebral palsy – a veritable disaster in the world of augmentative and alternative communication. A harsh assessment perhaps, but consider this: Deaf people who sign need to be able to control their movements in order to communicate. And people with movement disorders and spasticity (and who are non-verbal) are typically supported with communication devices which utilize voice-output technology. Owen cannot organize his movements intentionally in order to expressively sign, and he can’t hear the devices designed to ‘speak’ on his behalf.

I’m not sure why, but it has taken me years to fully understand the magnitude of this dilemma. And now that I think I do, I’m even more perplexed as to what to do about it. To be fair, many of our initiatives were fully-formed out of the gate and probably too overwhelming for me to implement properly. We leave behind us a trail of partially-developed, half-implemented, fully-failed communication systems and tools, including Total Communication, Blissymbolics, partner-assisted auditory scanning (using Boardmaker Symbols), Communication Books, use of the Big Mack switch (with pre-recorded, sequential messages), signaling devices and facial expressions (for indicating preferences).

For each of these methods, there would be many variables to consider: Does he understand the question? Is he motivated to answer? Can he access the device? Does he understand what is expected of him? Is the activity interesting enough? So many questions, each one very difficult to answer without knowing how much he comprehends.

About 4 years ago, I decided that we would commit to something once and for all: American Sign Language. I knew that he couldn’t, and likely wouldn’t, be able to sign back, but I also knew that all those pictures and gestures did not constitute language. What chance did he have of even understanding what was going on around him if he didn’t have a receptive language? If I could be sure that he had a solid language base, perhaps I would better know how to support him. And at the very least, Owen would have a way to understand his environment.

At that point, I decided to hire only Deaf support workers and improve my own signing. Until that point, my signing knowledge was minimal. I thought I was better than I was, having taken a few classes and hiring a tutor. But it wasn’t until I was ‘forced’ to communicate with Deaf people that my signing improved. And now, while I’m not completely fluent, I can converse easily and communicate anything I need to. And I also have perspective. Deaf people don’t need to imagine what it’s like to be Deaf, so I can simply ask them instead of guessing and assuming – which of course, helps me better understand my son.

And so now, four years later, Owen has had skilled, consistent exposure to ASL. He seems to understand – most people in his life get that impression – but it would be good to know for sure. We are embarking on a journey that will use ASL as a means to explain and include, and seek to develop a method of expression. No small task, for sure.