experiencing a story

Encouraging literacy for Cody has been a challenge.  Lacking the rich visuals from all the interesting and beautiful children’s books there are takes away from the experience.  Not only are pictures compelling, but they also offer so much information for the reader about what is happening in the story and also teach concepts to young children about activities and objects and people they might not get to experience first-hand.  For Cody, the lack of visuals means that both his understanding and his enjoyment are compromised.

There have been many ways his teachers and family have tried to compensate.  We try to pick books that relate directly to activities or concepts Cody has had experience with and is currently learning in school or at home.  We choose books with textures, patterns and rhymes.  We have created experience books; collecting items from hands on experiences Cody’s had and adhering them to pages, adding braille and binding them together. We have exposed him to audio books with animated story-tellers and musical accompaniment.

Another good idea which I hope to do more of with Cody is using story boxes.  Story boxes include a collection of items found in the story to be explored while reading.

Cody and I had some fun last night trying a storybox while we were reading one of his favourite books, If You Give a Mouse a Cookie by Laura Joffe Numeroff.   Cody is very familiar with this book, I’ve read it to him many, many times.  Overtime I’ve added more and more of the components of the book into a story box.

 

storybox

Here are some of the objects from the book: drink, straw, napkin, storybook, paper, pen, scotch tape, etc

 

 

When the mouse takes a drink with a straw and wipes his face with a napkin, so does Cody!

 

When the mouse starts sweeping in the story, so does Cody!

 

Codysweeping

 

 

When the mouse gets tired, fluffs his pillow and cozies himself under a blanket, so does Cody!  (he likes this part!)

And when it’s time to draw a picture and stick it on the fridge, so does Cody!

FridgePic

H’e’s done better as far as scribbles go!

Next time, if Cody’s lucky…he’ll get a cookie too!

 

 

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!

 

What do YOU see in the dark?

Us sighted people are so ridiculously dependent on our vision.  It is the be-all and end-all of our existence.  Put us in a dark place when it’s not bedtime and it doesn’t take long before we’re searching for some light, and if there’s none to be found, then for somebody to clutch, or something familiar to hold onto…  Of course by now you’ve noticed and taken a quick look at your pupils right after you’ve shut your eyes tight or after there’s been an absence of light.  Major pupil dilation!  It’s like our eyes are in panic mode, our pupils straining, urgent to soak in any stray ray of light that might be found.

Straining, scrambling, reaching, yearning…for light.  Why are we so uncomfortable in the dark…?

This Easter, when my family was over we blindfolded ourselves and, using Cody’s cane, walked around the house in order to find our own Easter treats.  We all had varying reactions to being in the dark; I was especially aware of keeping an “upper bumper” with my left arm. I did this because even though the cane protects you from waist down, anything from waist up which may be overhanging could surprise you.  I’ve seen Cody hurt in this way.
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My mom started out completely disoriented but ended up with a cheerful celebration when she arrived at her destination!

2015-04-06 18.39.132015-04-06 18.40.07My dad kept remarking over and over, “Wow, this is really much harder than I anticipated!”

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Putting on a blindfold as a person who has used sight their entire life does not simulate Cody’s reality, not even close…but it gives us a taste of the practical challenges blindness presents.  From the moment Cody was born his brain did not depend on sight but on the numerous other senses and pathways at its disposal to gather information and process the world around him.  Us sighted people have used sight from the beginning (although it takes a while for it to develop entirely), we are entirely dependent on it, it gives us by far the bulk of the information needed to process our surroundings.  So, when we are blindfolded and navigating in the dark, our brains are still functioning visually – remembering landmarks and estimating distances visually, using our visual memories to help us figure out the lay-out and structure of objects around us.

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Try to imagine how the brain of a congenitally and completely blind person functions, not based on visual memory but on tactile memory, scents, etc.  Try to imagine how these memories are stored and recalled…it’s hard to, isn’t it?  How I would love to be able to talk to Cody about these things.

As a way to get a small taste of blindness, to gain an amount of awareness and respect for the challenges faced by those living with blindness, I challenge you…  Take one activity today and do it with your eyes closed or blindfolded; whether it be pouring and drinking, brushing your teeth, or walking the length of your house.  Pay attention to how your brain attempts to adapt and what your feelings are.  Let me know…

What do YOU see in the dark?