THIS BLOG’S MISSION

(July 2009) Ahhh!  The best of intentions!  Below this section is the original introductory page to this blog – an explanation of why it’s called ‘Yes or No’ and a description of my genuine, clear intention to develop an expressive communication for my son.  Two and a half years later, we are no closer to anything resembling a communication system.  And you know what?  That’s ok.

It’s been an exceptionally full couple of years: 6-week hospitalization, withdrawal from school, baclofen pump explant, a multitude of medical testing and various new medications.

And decisions.  So many decisions.  This, I think, is shaping up to be the new direction of the blog.  A discussion of decision-making on behalf of someone who cannot make decisions for himself.  Someone who cannot express a preference.   Someone who does not even know that a preference is his to have.   In this forum, I will continue to digest information, consider options and discuss the medical, ethical and moral issues of the various choices presented to our family, as they relate to Owen’s care.  I welcome your thoughts and comments.

The beauty is that I can still call this blog ‘Yes or No’!

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(Jan 2007) My son, Owen, is a lively, personable, interested 9-year-old boy – who perhaps has lots to say, if only he could. He has extraordinary physical, medical, social, developmental and communication needs that all interfere with his ability to express himself. This blog is meant to represent Owen’s journey to finding a way to expressively communicate, which may include responding YES or NO to questions asked or choices offered. And it’s meant to solicit feedback, advice and support – from the communication professionals community, from other parents and caregivers and perhaps from other augmentative communication users.

Our family has taken a long, meandering journey through the world of augmentative and alternative communication, with successes only indicated by the fact that we know what doesn’t work. We have tried (it seems) every approach, from Auditory-Verbal Therapy to Total Communication, to Boardmaker symbols, to Blissymbolics, to voice-output devices (particularly useful for a Deaf boy :)), to auditory scanning devices. Sometimes ‘failure’ of these approaches was due to Owen’s lack of responsiveness, but many times it was because of system implementation logistics. And many times it was from plain old lack of follow-through.

So, due to a number of aligning forces, I feel that the time is right – now – to embark on a focused program that pins down the right expressive communication strategy for Owen, and follows it through to a natural conclusion. The natural conclusion hopefully being that Owen can indeed indicate YES and NO reliably. (For you language professionals: you may be wondering why I’m assuming YES/NO is the way to go, when there are less complex frameworks with which to begin. I am open to feedback, but I feel that his physical and language limitations do not, at this point, support choice-making. YES/NO indication intuitively makes more sense to me – but I am willing to be proven wrong.)

Some interesting tidbits:

• Owen is Deaf. He has been exposed to American Sign Language (ASL) for several years – all of his caregivers are Deaf and fluent in ASL, and my ASL skill level is proficient. While I’m not opposed to including picture symbols for choice-making, I also recognize that pictures themselves do not represent language. Owen seems to understand ASL, as his emotional and facial responses are always appropriate to the information given. I intend to continue using ASL as Owen’s primary receptive means of communication.
• Voice output systems do not work for Owen as he can’t hear that he’s made a choice or indication. As well, his Deaf caregivers cannot hear his selections either.
• Owen’s reflexive muscle tone, while improving (due to the recent implantation of a baclofen pump), interferes with his ability to physically access switches and other technology devices. Historically, his big toes on both feet have shown the most potential for targeted movement. However, there may be other options.
• Owen’s eye gaze is unreliable due to nastagmus (‘shifty eyes’) and his reflexive tone. Often, his eyes will reflexively pull away from the very thing with which he wants to engage. Having said that, he has excellent vision and shockingly good peripheral vision. I am often convinced that he does indeed have eyes in the back of his head.

There is very little overlap between the Deaf and disability worlds. I assume however, there are people out there who know something of this combination, and can lend some advice/feedback/support as I develop a plan for Owen’s expressive communication. So, if you are out there reading this, please follow along for a bit and jump in when you can.