Therapy Support Found for Pediatric Use of an Eletrolarynx
Nathaniel and I left his Cincinnati Children’s Hospital check up last May with an interesting recommendation from his ENT: look beyond the pediatric community for information and support. I had come to the appointment with questions about Nathaniel’s options for voicing. They shared of another patient with a laryngotracheal separation who learned to use esphageal speech. They also expressed a great deal of hope that given the right support, Nathaniel had a good chance of voicing.
Nathaniel and I went to our first Laryngectomy Support Group meeting in June, the very next month. The welcome we received and hope others shared in Nathaniel being able to voice someday brings tears as I try to write. Through out my journey as Nathaniel’s mom, key people have caught my vision for the next possibility for him and then offered ongoing encouragement to pursue the goal. Some Larys (name those with a laryngectomy use to refer to themselves ) from the support group have been added to that short list of names. In December, club members gave Nathaniel an eletrolarynx of his own.
I immediately began networking with group members and their contacts in the local adult medicine and laryngectomy world. Though they work solely with the adult clients, representatives from Atos Medical helped me learn more about options. A speech pathologist for the company spent a lengthy time on the phone one afternoon brainstorming a possible path towards Nathaniel voicing. She outlined steps needed towards the goal. These snippets of information and support motivated me to make the next inquiry and to follow up on the contacts and resources suggested.
The difficulty is the highly specialized field of speech language pathology. Nathaniel needs support in oral motor development, oral motor sound movements that toddlers and young children typically acquire as they develop articulation, and instruction on the use of an eletrolarynx. I found therapists comfortable with some aspects of that puzzle, but until this spring failed to find anyone comfortable charting a path.
In March, Nathaniel spent almost three hours with two clinical professors from a local university’s Department of Communication Sciences and Disorders. One is an expert in articulation, phonological disorders, and childhood apraxia of speech; the other professor’s expertise is in adult acquired communication disorders and specifically with neck and throat cancer patients in the hospital setting. Their time with Nathaniel was watched closely by multiple speech pathology students. The department shared following conclusion in their multiple page report,
“Prognosis is unknown for gaining skill for using electrolarynx. (Nathaniel) has demonstrated some initial success with movements, holding the eletrolarynx himself, producing a few bilabials with the eletrolarynx, and was very cooperative. These are all positive indicators to at least try to train him to able to make oral motor sound movements to eventually use the eletrolarynx."
They are willing to try.
Nathaniel has had three one hour sessions. The clinicians are working on various lip, tongue and jaw movements using verbal cues for each like open mouth, tongue up, tongue down, etc. They are pairing articulatory movements of the mouth for sounds to the hand signals I’ve taught this year for each phoneme and their own voicing. I have cried watching layer after layer of work in Nathaniel’s life, by professionals and myself, provide doors to the next step. We are using some oral motor and sound production apps on the iPad as part of our daily “let’s move our mouths” work at home.
I see changes weekly. Nathaniel is suddenly vocal. That might sound silly being said about a nonverbal child with no use of his vocal cords, but I don’t know how else to explain it. For the first time in his life, he’s doing spit raspberries with his lips. He practiced those through a recent church service. The small child sitting behind us answered; they had great fun going back and forth in full spit raspberry conversation. My brother once said that he noticed Nathaniel moved his mouth when he gestured as if he was trying to speak. I see that almost every time Nathaniel is gesturing or signing now. He is constantly making noises in his cheeks and further back in this throat that I can not duplicate or figure out what he is doing. When we are working on literacy and phoneme work, he is watching my mouth and attempts to copy the movement of my lips and tongue.
With the weekly support, it all seems so logical. The starting point and incremental steps make sense. It strikes me as something I should have figured out and been doing with Nathaniel years ago. But without those critical individuals dreaming and thinking with me and leading me in areas I don’t understand, I couldn’t get momentum. Like the professors have said, Nathaniel ability to voice in the future is unknown. There isn’t research or information in the discipline to give a prognosis on what we are trying to do. I have come to believe that undetermined predictions create Nathaniel’s best opportunities.
What does this mean for our AAC work with Nathaniel’s communication device? Nothing. Esphageal speech or using an eletrolarynx is another form of alternative speech. The university’s clinic is free of charge. We can add these new sessions and continue the weekly sessions with Nathaniel’s speech language pathogist who is working on communication with his device. We are giving him tools. Time and Nathaniel will tell us his preferred method of communication; I suspect it will always be a conglomeration of what is fastest in any given moment. I rarely share video of Nathaniel. But these first steps toward speaking are worth documenting.
Photo above of Nathaniel working with two SLP students in clinic was taken from an observation room and shared with their permission.