My mother was my first and most important teacher about life – not in a formal sense as a school teacher, but in an informal learning-what-is-really-important-in-life-while-you-are-growing-up sense. Sometimes her lessons to me were direct and delivered with words ("Everybody gets a turn." "Treat everyone as you would want to be treated." "Say please and thank you."). At other times, the lessons I learned from her were indirect and came merely from my being present and observant as she lived her life with love, ingenuity, resourcefulness, grace, and good humor. Although she did not realize it at the time, she helped me to learn enough about augmentative communication when I was growing up to decide to study it further as an adult.
The unexpected pearls of knowledge about augmentative communication that I gained as a child came during Mother's annual bouts with laryngitis back in the 1950s, when my brother and I were quite young. For several years when hay fever season arrived, Mother would lose her voice completely and would not regain her speaking ability for a few days. Her vocal chords were painlessly but totally shut down during this interval. By all measures, a case of laryngitis is quite minimal in the grand scheme of things, but to me as a youngster, Mother having no voice for a few days had major significance. Consequently, during those vivid short-lived experiences, I learned some basic concepts and learned that creativity and determination are helpful attributes in any attempt to communicate without speech.
During those limited but seasonally repeated days of Mother's voicelessness, my brother and I learned to use several strategies that worked well in our situation. We asked yes/no questions so that Mother could nod or shake her head in response, followed her pointing and gesturing (she was naturally good at pantomime), and read her lips. With all these alternative methods, we got along reasonably well within our daily routine. The biggest challenge would come when Grandmother (Mother's mother) would telephone and ask to talk with her. Grandmother lived alone and her daily phone calls to Mother were warm and lively social visits. As Grandmother had never experienced laryngitis, my brother and I would do our best to convince her that Mother could not talk on the phone because she was truly unable to voice even a whisper and to convince her that we would be capable and enthusiastic interpreters and relayers of Mother's responses to her. Fairly quickly, however, the awkwardness of the situation and the slowness in getting each interpreted response from Mother would always prove too trying for our sweet but fast-paced Grandmother. She would reluctantly yet sweetly end the failed conversation by expressing the hope that Mother would be able to talk the following day.
The lessons I learned from Mother's bouts with laryngitis were useful when my own periodic bouts with laryngitis occurred years later in the 1980s and 1990s. Fortunately for me, technology had advanced by then, and I was able to handle phone calls at work by having an assistant take the call, repeat the caller's message, and then read to the caller the response I typed on my computer screen. This worked surprisingly well, since I am a speedy typist.
Once e-mail was available on the job, I diverted many phone calls to e-mail, which worked quite well and did not require an assistant – except for answering the phone and notifying the caller of my predicament. I could also place orders for materials by fax, so I was able to work effectively with minimal adaptations at my desk. However, I needed reliable face-to-face communication when I left my computer station to venture into other parts of the building to help with problemsolving or to field requests for information or materials. Here I needed another strategy, since I did not have a lightweight portable computer at my disposal in those days. Undaunted and optimistic, I carried paper and pen and a portable communication device that had a paper tape output (Canon Communicator) to help me to communicate with anyone who could read my writing or the tiny print of the communicator. I had written on the top of my paper that I had laryngitis, to explain my voiceless state, and I requested that co-workers proceed to ask their questions or make their requests.
Happily, I found that at least some co-workers would wait for my complete response, and to them I was increasingly grateful for their kindness, patience, and outstanding teamwork. Others, however, would deliver their message or request and then leave without my response, saying that they would be back later – even though my response time was relatively fast in my estimation. For these folks, I then had to hold onto and keep track of my response so that I could give it to them when they returned to retrieve it. Still others would start communicating with me but find that the awkwardness or slowness was too frustrating for them and would just tell me that they would ask me tomorrow or figure it out themselves. This disappointed me, and they could tell it did so from my expressive face, but they were in a hurry and accustomed to operating at a certain speed. I could not keep up with their usual interaction pace, and they could not bring themselves to gear their pace down closer to mine.
I like to think that if my condition had been permanent then we would have worked out some creative ways to get past the barriers to our communicating. We could have made more computer stations with e-mail available for communication within the building, for instance. It would have required some modifications and adjustments for all of us, of course, but that kind of accommodation would have been possible. Since I was in a critical management role, eventually all employees would have had to deal with me directly. With my temporary impairment, however, this was not always necessary. By contrast, for someone who has an ongoing long-term speech impairment, the situation would be quite different from my temporary inconvenience and would require long-term strategies to keep communication flowing.
As you can see, the lessons I learned from Mother's laryngitis served me relatively well in my own life in those years. Fortunately, I studied more about augmentative communication along the way, which served us well later on when she had the opportunity to provide me additional experience (the best kind of lesson). As it happened, during the last month of her life she was quite ill with cancer, and her condition was steadily deteriorating. Prior to that time, she had arranged her house with the help of family so that items were conveniently placed for ease of reach with minimal expenditure of limited energy. It was quite a marvel of ingenuity. I was with her in that last month to assist her with any tasks that she could not do on her own and to allow her to be as independent as possible throughout her remaining time. Her speech became increasingly labored and a word or phrase that she could speak clearly one day often became too difficult for me to understand by the next day. When she could not enunciate her words clearly enough, I offered her some alternatives: pencil and paper, Canon Communicator (on which she could type out a message), alphabet board (so that she could point to letters to spell out her message). I expected that at first she would use the typing device, since she had been a touch typist and since I considered it easier to press a key than to deal with pencil and paper. Nonetheless, she always chose the pencil and paper which were more familiar. If her condition had been a long-term one, we could have developed some quick methods for indicating an item that she needed or a comment that she wanted to make (choose from a list or from an array of pictures, etc.). Since her condition was deteriorating quickly, we had to be creative on the spur of the moment.
On one occasion Mother wanted me to get an item for her, and for some reason she could not say or spell the word nor tell or show me how the item is used. Previously great at pantomime and gesture, she could not use those skills in this situation. Unfortunately, I could not guess what the item was from the context of the situation either. So, she decided to describe in words where the item was kept, but I could not follow her description since her words were still unclear to me. With paper and pencil, though, she was able to draw a picture of the kitchen cabinet and to draw the item in its usual location. From that I determined correctly that she needed a straw. Fortunately there were a few things working in our favor. First, I was willing and determined to stick with her in the conversation until she let me know what she wanted, and she knew that she could trust in that. Second, I presumed she was competent to let me know what she wanted by some creative means. Third, we both had the time and energy to see the conversation through.
Because of our long-term close relationship and our mutual understanding of the importance of autonomy and independence – and the joy we both found in problemsolving – Mother and I had some very special times together in those last days. If she had been cared for by strangers with whom she did not have this level of understanding and communication, she would have been more dependent and would not have been able to communicate so effectively or to do so much for herself. She also would not have had so many long interactions with me that we both enjoyed. I know she would have adjusted to other less familiar caregivers, but she may have been more frustrated and her final days may have been less satisfying and less joyful.
The day before she died, Mother wrote out some instructions having to do with her needs that day and also wrote a message of love to family and friends. This message turned out to be the last one she wrote, so it became a sweet parting message which will stay with us always. I am forever grateful that I knew to offer pencil and paper and to assume that Mother would be able to communicate through various methods other than speaking even as her ability to walk, move her body, and speak declined during her illness. Because Mother could continue to communicate with paper and pencil and also by answering our yes/no questions as needed, we were able to know that she was fully with us through her last days at those times when her speech failed her. Mother was calmer and more at ease in having a way to let us know what she needed and to assist us with her care. In addition, we gained the gift in writing of what turned out to be her final words of comfort to us.
I hope that sharing these experiences with my Mother which I fondly call Mother's "lessons" will help others to understand a bit more about strategies for communicating without speech. I hope that you the reader will remember the importance of offering other options for communication. It can make a world of difference to you and to someone you know.