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.
7 Comments
Peggy Scull
10/22/2017 12:01:33 pm
This is so heart felt ... The fight you both do....is amazing!
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grams
10/23/2017 09:20:34 am
curren is our precious little warrier fighting for his right to be heard!!!!!!!! GO CURREN! love you a bushel and a peck and a hug around the neck! grams
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Pat Manning
10/23/2017 09:58:28 am
How precious thou art! I once served on the Brevard School Board and taught courses to teach teachers how to teach at UCF for 30 yrs! I could at one time be of help and an advocate for your precious child! However, my voice is not as powerful as it once was in educational circles! I hear your cry for your precious child! Pat Manning (UCF Professor Emeritus)
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Teresa Rhoads
10/24/2017 06:27:19 pm
Oh my! Is this a prayer answered indeed? So glad you and Barry have found the correct methodology to communicate with Curren. Wonderful news.... Teresa
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Kristen Martin
3/5/2019 06:03:07 pm
Hello, I came across your blog in desperate hopes of searching for more information of what HIVEP2 is. We got the call today that our now 13 year old daughter has finally been diagnosed with this. We have been fighting for answeres since she was 4 months old and today after all these years we got an answer. I’m not sure how I can say I feel about it at the moment. Am I thankful and happy we have answers, absolutely. Am I more than grateful she is happy and healthy, you bet I am! Am I disappointed there is no support, help, or awareness on this gene mutation, most definitely. I have so many questions and no one to ask. I feel relieved and defeated all in one breath. Thank you for showing up when I needed it. Thank you for being honest and a voice to your son. And most of all thank you for sharing your story.
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Nerissa
3/6/2019 07:40:32 pm
Hello Kristen, so very nice to connect with you! We have a private Facebook group that has almost 40 HIVEP2 families that are connected. Lots of recent diagnoses in the last year or so. The group is called “HIVEP2 gene connection” if you’d like to join. This is the easiest way to connect with other families. It is challenging that there are no foundations or answers, but there are a few doctors and some research taking place. Please feel free to email me at [email protected].
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Adrienne H
3/22/2022 08:10:43 am
Hi Kristen, Thank you for sharing your son's story. You have a beautiful family. We've just received a HIVEP2 diagnosis for my 5 year old daughter today. I have sent a request link to the Facebook group, and hope to learn more there.
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About MeI 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. Categories
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