freedom of speech…or, the lack thereof

“Deprivation of the ability to speak is more like an attack of impotence, or the amputation of part of the personality.” – Christopher Hitchens

Hitchens,  well known author/debator/lecturer, died in 2011 after 18 months of suffering from esophogeal cancer – a cancer which slowly robbed him of his voice.  In his last writings he speaks of the devastation of losing that which was “innate and essential” to who he was.  It is hard to imagine losing or not having your voice, isn’t it? Speaking what is in our hearts, in our minds, communicating wants, desires and thoughts is so natural and intrinsic that I believe we largely take it for granted.

There was a time when Cody could speak and sing much more clearly and regularly than he does now.  For reasons nobody seems to understand, his vocal voice has not developed and in fact, has to a large degree grown dormant.

There are many regular instances when Cody uses his voice for basic words of requests and, though very unclear, often he is understood by those who have learned to understand his attempts.  Other times he is not understood, and the emotions of frustration, anger and eventually, resignation, rule the moments.  Sadness often surfaces; pouting lips, large tears making their way down his cheeks…me, sitting impotent at his side.

For quite a while, Cody knowing that we were trying to understand; him knowing that we were listening carefully and reading his body language and natural gestures soothed and consoled him to a great degree.  People in his life have implemented various tactics and methods in our attempts to help him.  But he is 11 now, and as his comprehension grows, as he ages and matures and increasingly understands his world, these efforts and attempts of communication are not enough.

It was as a result of many hours of research, phone calls, emails, and meetings, that Cody now has a team of professionals assigned with an amazing goal; to provide Cody with a new way to communicate! Alternative and Augmentative Communication (AAC), is a term which describes various (often ingenious and highly adapted) methods of communicating for people who for many reasons cannot use speech, or at least not entirely.

Because Cody is blind, we cannot use many of the visual methods common in AAC.  The process of choosing and beginning to implement a system for Cody has been one with many questions, and one with the realization that we will continue to have questions…every step of the way!

We will be using Tangible symbols with Cody; real objects he can manipulate and hold, each representative of an activity or a particular item.  Some of these symbols will be a replication of the actual object (eg. a small ball will represent a ball).  Other objects will be a piece of an item which he would naturally associate with a certain activity (eg. a piece of a seatbelt will represent going in the car, because he is very familiar with the feel of the seatbelt on him). Gradually, we will teach him these symbols, with much repetition and use.  We will teach him how to exchange them – the meaning and power of handing the item to his partner, as a means of communicating a want or need. Gradually these symbols will change, grow smaller and thus more portable.  Eventually, these small pieces of items or textures will be mounted on cards and placed in a binder, one which he can flip through in order to make reference to items or activities he wants.

At school, the teaching team has introduced this by using objects to represent the various activities of his day.  For example, a spoon represents snack/lunch.

At home, one way I am helping with this process is by teaching him the concept of exchange; how to hand over a tangible symbol as a means to communicate what he wants.  With food, we have begun with placing the actual food items inside a ziploc bag (so he can feel the actual pieces of food inside), having him hand it to his partner, and spotlighting the appropriate word that it represents.  He needs to initially learn the concept of one item representing another.  We will not always use ziploc bags for food, but it is a way to start.

I have added a short piece of a video showing how I am teaching him this concept.  Dan helped me this time!

 

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