Three Things I Learned at the IAL Annual Meeting
Nathaniel and I had the privilege to attend the International Association of Laryngectomees’ Annual Meeting and Voice Institute last month. A third party funder, Pythian Sisters of Virginia, sponsored our trip; we could not have participated in this educational week in Phoenix without the financial gift.
Not surprising, Nathaniel was the youngest laryngectomee at the meeting. Konrad, a young man from Poland, was the next youngest. He celebrated his twenty-fourth birthday while in Arizona. Watching Konrad tackle new challenges, like swimming for the first time since surgery, gave me a wonderful glimpse into what life might be like for Nathaniel in the future.
It was very comfortable to be with laryngectomees (larys) and their caregivers. Being in public with Nathaniel can be tricky. Managing his lung secretions draws attention. The cough is often a wet mucus-y sound that I suspect makes by-standers wonder if he is sick. Sometimes one simple cough solves the problem, but usually not. Compete airway clearance often requires repeated coughing or suctioning with a machine. We can be loud, disruptive, and even scary depending on the comfort level of those around us. Children and their parents on playgrounds don’t get it. But fellow larys understand. It was enjoyable to be with people for four days, but never receive that awkward stare or subtle moving away that we get daily. I observed wonderful examples of airway clearance manners. I have ideas on how to help Nathaniel grow in his awareness and responsibility for his own pulmonary needs as he gets older.
The meeting helped me understand the many similarities and differences between our lives and that of an adult laryngectomee. Three topics I have continued to think about include the role of the speech language pathologist, risk taking, and motivation to communicate.
Role of a Speech Language Pathologist
The Voice Institute programming portion of the meeting provided educational sessions for SLPs. They play a significant role in pre and post- laryngectomy surgery care for adults. They help with voice recovery whether using voice prosthesis, electrolarynx, or esphogeal speech. They work in an ENT’s office and change the voice prosthesis for patients. They also help with swallowing concerns, humidity, and stoma care. For adults, it seems an SLP is their go to professional.
Nathaniel’s care is managed differently. An ENT and nurses manage the anatomy and stoma. A pulmonologist and nurses manage Nathaniel’s humidity, lung, and airway clearance concerns. This care can also include home visits from respiratory therapists and representatives from equipment companies. Speech language pathologists monitor his general language development, instruct on the use of his augmentative alternative communication (AAC) device, work on oral motor development and placement for using the eletrolarynex, and provide intensive support on a feeding team along with a dietitian and psychologist. However, the therapists’ expertise is often so narrow that Nathaniel has been seen by three different SLP’s in a week to have all his needs addressed. With so many professionals involved, care coordination is vital.
Seeing Konrad and the other larys swim conceptualized my understanding that at some point, Nathaniel may chose to take significant health and safety risks. For now the risk assessment responsibility belongs to us as his parents. There is an assumption that we will keep Nathaniel safe through the things we allow him to do. This is inherent in the parent-child relationship. It is intensified when a child is living with medical conditions. There was a time when I didn’t take Nathaniel to the grocery store because of the risk of contracting a virus and what that illness meant in his life. Watching the swimmers, I wondered if I would make different decisions for myself personally than I do on Nathaniel’s behalf. I likely tend to be more cautious with someone else’s safety than my own; I suspect we all do. I anticipate transferring ownership of risk taking from parent to child will look different with Nathaniel than it did with our other children. I am thankful to have observed the swimming portion of the meeting and to begin thinking about this important topic.
Motivation to Communicate
During the caregiver’s breakfast and discussion, a woman shared that her husband relearned to speak after his laryngectomy by turning on their TV’s closed caption setting and reading the programming aloud. Others talked of their loved ones’ determination in using an eletrolarynx or TEP and the varying techniques that helped them succeed. As I listened to these stories, it occurred to me that I can only provide external motivation for Nathaniel to speak. That internal drive or ambition to speak I heard about in the adults isn’t something that a parent or speech therapist can magically create in a child. We can offer opportunity, model speaking with his device or an eletrolarynx, redirect a poor communication choice like a melt down, prompt for more communication when he offers just a bit, and incentivize with stickers, preferred activities, and toys. But that internal drive to just do it? No one can flip a switch and turn that on for someone else. I sense it is especially difficult to motivate a child, but that might be self-pity that I have a hard job.
There are days when Nathaniel works hard at using his device to communicate and there are days he doesn’t. There are times when his persistence to get his message across amazes me. There are times when he stays quiet. I saw bits of the same in the adult larys at the meeting. For Nathaniel and most individuals I’ve met who have a laryngectomy, communicating is much harder than it is for me. More than once, someone waved a hand, a “forget it” gesture, when I was struggling to understand them. They decided the end result wasn’t worth the labor. And as much as I wanted to keep trying harder and harder to hear what they had to say, they were done. I am still learning how to show respect and honor someone when they chose to be quiet. I am learning what silence communicates and how to be present in those moments. I can not provide anyone the internal motivation to keep trying when talking is hard, but the Phoenix trip solidified my motivation to improve my listening skills and to be at peace with silence.
The trip to Phoenix was a milestone reached for Nathaniel and me. It was our first time to fly with him. Our first time to rent medical equipment away from home. Our longest trip both in distance and time without Rich or a second caregiver. Navigating the airport portion with medical conditions and equipment should be a blog post all its own. I will likely write more on the Phoenix trip. But for now, thank you to those who provided the opportunity for us and to those who welcomed us into their world of living as a lary.