Imagine what it must be like to have beautiful, unique, and important thoughts, but no way to share those thoughts with the world around you. Image if the people in your life had no way of understanding the depth of your ideas because you had no way to express yourself. Imagine if your competence was not presumed because you had no voice to prove otherwise. Imagine if you were constantly quizzed to prove that you understood the world around you, before you were given a chance to prove you have the ability to communicate, When that opportunity came, imagine if you were only given two options to choose from at a time, that someone else selected for you, and if you didn't like either choice, it was assumed that you didn't understand the question.
This is the unfortunate reality for many non-verbal children and adults. Many approach the task of communication for those with complex communication needs by starting with a handful of picture symbols and adding a few more at a time as the child demonstrates they can communicate appropriately. This is not what we do with neuro-typical children - we do not decide that we are only going to say 6 specific words and only those words around a baby. We know they don't understand everything we say, but still we immerse our babies in language, and that is how they learn language. Why would it seem appropriate to do anything different with non-verbal children?
Earlier this year, I was blessed to be introduced to the concept of robust communication, and our lives has changed since that moment. I am disappointed in myself and how I limited my son prior to providing him with robust communication book. My heart aches for the unspoken doubt I had in him and his capabilities. It is overwhelming to think of all the other children and adults in the world that have not been given this chance and how hopeless they must feel, living in this world without a voice.
We have embraced a robust communication system called PODD (pragmatic organizational dynamic display) that allows Curren to say whatever he wants, whenever he wants, to whoever he wants. We started out this summer by just modeling what was going on in his life in the form of aided language input - by narrating life and pointing to the symbols in his book that represented these thoughts. Soon after we introduced the communication book, Curren started pointing for the first time in his life. And he started pointing to symbol in his book. He has shared wonderful things with us - he loves asking to play ball, to make cars crash, to swing, for it to be quiet, and to brush his teeth. He can tell us that something's wrong, and ask for a sensory activity when he's overstimulated. He can tell us that his brother is silly, or that he wants to visit gammy, or that he's ready to go to bed. I recently began videoing our interactions and logging all the communicative functions Curren is able to initiate with his PODD book. In 30 minutes, Curren pointed to 91 symbols, that were all appropriate to the situation. This would not happen if we only allow him access to 6 symbols until he mastered those, only to add a few more at a time. In fact, it would take decades for him to have access to enough language to have spontaneous and genuine conversations if we took that approach.
I bring these points up because October is AAC awareness month, and I have personally experienced and heard many stories from others about the world not being accepting of these ideas. Not having speech is not the same as not understanding. All people have a basic right to affect, through communication, the condition of their existence. My son just wants to be doing what the others are doing.
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I am a mother, architect, wife, and a lover (not a fighter) - with a thirst for knowledge. My journey been recently refocused, as my family navigates through the world of medical and developmental uncertainty in hopes of providing every opportunity for my son to be his personal best in life.