The importance of having access to communication can be illustrated through a boy I met at the start of my career, 15 years ago; his story is my touchstone to approaching children and educating those working with children about language. Steven was 17 years old when I met him. He was a paraplegic and had no verbal speech with the exception of one vocalization that he used to get peoples attention, “aye aye.” Imagine, if you will, Steven, highly social, coasting down the hallway in his wheelchair greeting friends and staff, with a big smile, waving his hand over his head saying “aye aye.” This boy was often given sorting tasks in the classroom. Years ago decreased verbal output was linked with decreased cognition.
The speech therapist I replaced had ordered Steven an eight-cell voice output device, meaning Steven would have access to 8 messages per overlay for an activity. In therapy it was very clear Steven was eager to learn to use his device. I instructed his teacher about Steven’s new device and consulted her on what core vocabulary or overlays she needed for class to make the use of the device easy and successful for all. It soon became clear to me that the teacher was taking Steven’s device away as he was using it inappropriately in class and not returning it to him, but rather leaving it on a shelf, out of reach for the child.
I educated the teacher that the child needed a 3-4 week time period of adjustment to learn appropriate behavior with the device, and that if a verbal child was interrupting the class that you couldn’t remove their voice box, but would have to deal with the verbal child’s interruptions with redirection back to the classroom topic. I urged Steven’s whole team to give it a real try over the next few weeks and if there were no progress we would revisit the appropriateness of the device.
Within 2 weeks Steven proved to use the device effectively and appropriately and within 3 weeks outgrew the 8-cell device and was trialed with a 32-cell device (a big deal for a child who had no access to words for the past 17 years). Within 2 months Steven had overlays (with 32 messages per activity) for his boy scouts, for game playing, for circle time, a general core vocabulary for moving about the school, an overlay for occupational therapy and physical therapy, and an overlay for gym. He went from a child who was left to the side of the room to sort objects and to only participate socially with “aye aye,” to a child who used language across activities and was beginning to target more academic topics.
One perspective to this story is it was a success story on giving a boy language. The perspective I take is that this was a boy, who was robbed of language for the first 17 years of his life, surely impacting his ability to develop to his maximum potential. I urge people to learn from Steven and allow consistent access to language, via their device, even if they are interrupting the class with it. They will not learn to use it appropriately if they are not allowed to learn how to use it. Their voice does not benefit them when it is on a shelf or in their desk. Their voice should be heard across activities and settings. (Lauren Butera, Speech Therapist, Celebrate the Children)
Contributions to this blog are made by Celebrate the Children's highly talented, interdisciplinary team and wonderful families.