Lip reading is often assumed to be simple, but it is anything but. Rachel Kolb describes how using one sense (vision) to perceive something intended for another (auditory) is an incredible challenge.
Some days, one patient encounter gone awry can feel like it throws off the entire day. Give it some distance, though, and zoom out for better perspective, and suddenly it's clear that there are many ways to respond to the same problem.
If every patient we encounter has the same problem, how many ways can they respond?
- Relief. Every so often, having a name for what you're experiencing helps to find the strength to acknowledge it and want to address it.
- Validation. This might be the first time someone really listens to, and confirms, what has been a problem.
- Disappointment. So much for hoping it was no big deal, or just a figment of the imagination.
- Frustration. Why does something always have to happen? Why now? And why is everything so hard?
- Anxiousness. More stress on top of stress, and stress about all the stress.
- Exhaustion. Here's yet another problem in a long list of problems.
- Depression. Life is hard, and this makes for more than can be handled. Treatment for depression in the wake of acquired communication deficits can be especially daunting.
- Apathy. Too much else going on to really take notice or care.
- Neutrality. Knowing it's there, but not minding it one way or another.
- Anger. Directing feelings of anxiety, depression, frustration, et al outwardly, towards loved ones, strangers, or clinicians.
One sudden life change can take away everything someone was working toward or enjoying. Sometimes the things not talked about are the things most profoundly affected. Meeting our patients where they are can go a long way to providing the best care we can for them, right here and now.
One thing I like to keep in mind: If I'm angry, the last thing I want to be told is that I shouldn't be angry.
A few months ago I listened to an episode of a podcast called Invisibilia and the topic was expectations. They recounted how expectations can have both positive and negative results, and talked to a blind man named Daniel Kish who has a remarkable sense of his environment.
What struck me most about the discussion was not the discourse surrounding sight or the lack thereof, but on the arguments in favor of or against the use of 'clicking' for blind people to navigate their world (referred to as echolocation). Many blind people are discouraged from clicking, it seems, as they are told that it is not socially appropriate. By whose standards is it not appropriate? By sighted people.
I find it appalling that individuals out there "helping" people are limiting functional behaviors which can foster independence because people with sight may not understand it or somehow find it uncomfortable. In this case, it's not blind people who need to adjust, but everybody else.
Speech Dude extraordinaire Apophenikos on the "app-ified" state of AAC:
Those of us who’ve been in the field most of that 30 years have typically adopted the perspective of “well, this is raising the awareness of AAC to levels unknown” and “a rising tide raises all boats.” But are we so sure? Do we really think folks are getting some “better deal” because of the 100+ apps that are now available as “AAC solutions” – all of which claim to be The Answer, often supported by little more than some flashy words culled from linguistics and speech science, such as “core,” “morpheme,” “word,” “cognitive,” and, my favorite, “intuitive”. Toss in lots of exclamation points, a YouTube video of some poor kiddo having their face thrust into an iPad, and bingo… AAC in a box! I hear the product “experts” at Best Buy and the Apple stores are now recommending AAC solutions based on their years of experience in the field.
I feel like the potential for the iPad to be a great AAC device is not in the software. As The Dude pointed out in his post, there is no shortage of actual, good AAC software. What makes the iPad a compelling option is that the operating system itself is lightweight, mobile, and yet still powerful.
To me, what would be truly revolutionary would be to integrate an AAC system into the software keyboard itself. Then you could have access to it in every app you use, and you would be on a significantly more even playing field.