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Setting the Scene: Facilitating Language Development with a Student who has CHARGE Syndrome
kqcarlin
5/29/2017 3:27 PM
This week I will be sharing with you the top four gems I found while facilitating and developing language with my student who has CHARGE Syndrome. I have permission from his parents to talk about the strategies we have discovered. I want to provide some background knowledge on both of us for you before I get into the strategies. His name has been changed to "Marcos" for his privacy.
When We Met
Marcos and I began working together 3 years ago. His “hearing age” is just a tad bit older than that now because the interpreter before me noticed that he did not seem to respond to sound at all. His parents listened to her observation and brought Marcos back to the audiologist. They found that cochlear implant surgery had failed. It was staggering news. So they re-embarked on the cochlear implant journey and tried the surgery again. June of 2014, the new implant was programmed and turned on. In July, Marcos went back to pre-k with a new interpreter. Me. I began running around like a maniac, trying to save the processing device from being put away in the play kitchen cupboards, or lost in the sand box, and even snatched up by another student who liked to flush everything down the toilet! Oh my! As you likely know, they are magnetic and so are door jams, buses, and table legs! Oh, how much he has grown since then! By mid-year he was on the speech banana. He could recognize sounds! The implant worked this time. This was a huge breakthrough and a huge relief to his family after going through surgery twice, I cannot imagine how many fingers and toes they had crossed for this. Even though he was able to hear all 6 Ling sounds, Marcos seemed to prefer silence.
Realizing My Role
As a sign language interpreter, I was trained to support anyone with hearing loss, who used sign language, through interpreting services. But I will be honest with you, the focus during my training was typically toward the Deaf Community and people who adhered to Deaf Culture, not 3 year-olds with CHARGE Syndrome and a shiny new $10,000 processing device, who cannot yet tell you their preferences. I realized my role would be a bit different than what I had specifically prepared for as “interpreter”. This student was going to need so much support to orient to the world around him before I could be of any use interpreting formal language for him. It was my job to try and make the world make sense. I would need to figure out his preferences.
My role took on a whole new meaning when I began to realize that I must also orient Marcos to sounds happening around us and what they meant and teach him to listen. When working with someone with deafblindness, I was trained to also incorporate what is going on visually. With this student I began to feel my role of interpreter blend into a role I had previously trained for, Support Service Provider. So that is how I began to function. I did not realize that there was actually a job for this until much later called “intervener”.
Background on Marcos Levels on the Matrix:
Our first year together Marcos typically used some but not all areas of Level 1, 2, and 3 and began to emerge into Level 4 on the Communication Matrix to communicate.
Our second year together Marcos typically used mostly Level 2, 3, and some of 4.
This current school year Marcos spans a wide range of levels from 3 to 4, some 5, 6, and 7.
Over the next four days I will share some of the observations I made as Marcos’ interpreter and some of the ways we were able to mediate some of the challenges to increase his ability to understand and express language. I am looking forward to this!
I also want to extend a huge thanks to Marcos and his family. Thank you for your permission to share my experiences with your son.
This week's topics will include posts on the gems we discovered:
Hearing - “But he won’t keep it on!” - How we got "that thing” to stay on his head
Going Beyond Labeling - Auditory Verbal Therapy and modeling comments
Assigning Meaning to Expressive Attempts - Just do it.
Promoting Literacy - The sounds have signs. Both have a written form!
*Check back soon because I will be adding a YouTube video for signed version of this post.
SGD/Communication device,Manual signs,Level 1. Pre-Intentional Behavior,Level 2. Intentional Behavior,Level 3. Unconventional Communication,Level 4. Conventional Communication,Level 5. Concrete Symbols,Level 6. Abstract Symbols,Level 7. Language,Speech-Language Pathologist,Educator,Parent/Family Member,Researcher,Other,Intervention Strategies,Hearing Loss, Deafness, Cochlear Implant, CHARGE Syndrome
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