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by Gail P. Venable
When my brother Colin first told me about his ALS diagnosis, I thought to myself "Oh, no, not again." It was the second time in a few years that I had been in almost the right field to be able to help my family. A few years back, our mother had been stricken with a stroke that left her with visual, rather than linguistic, impairments. And now here was my brother, a master of quick verbal wit, losing the ability to control his tongue. And again my specialty, language and reading problems in school-aged children, was not the right one. But I did discover the power of networking, and the members of my family were beneficiaries of the kindness of ASHA colleagues.
In Colin's case, I happened upon an article in The ASHA Leader by Beukelman, Ball, and Pattee (2004, Dec. 14) about monitoring speech rate to determine when to initiate therapy. I wrote to two of the authors, Dave Beukelman and Laura Ball, for details of rate monitoring and for referrals, and I had both within five hours. They provided the guidance we needed for Colin to monitor his rate himself, and the recommendation of Melanie Fried-Oken in Portland to provide the evaluation.
My brother Colin and I live in different states so, over the years, we hadn't seen each other as often as I'd have liked. When I found out that he had a degenerative disease that was already beginning to affect his speech, the challenge for me was not just to maintain communication but to increase and deepen our interactions.
Colin's intelligibility was deteriorating rapidly. When I didn't understand something, I didn't know whether to interrupt him so he could try again or to wait and see if his meaning would become clear. Inevitably, the time came when I could understand almost nothing he was trying to say. And at times, when I visited, I would find myself thrust into communicating for Colin when I didn't know exactly what he wanted me to say. This frustrated both of us. It was a big relief when Colin got his first augmentative and alternative communication (AAC) device.
In counseling a person with ALS, the speech-language pathologist can play an important role in helping family members to anticipate the relevant questions to ask and to express their communicative needs.
Learning to communicate with my brother through technology has been an adjustment. I wish that I had known what questions to ask him early on. It would have prevented some painful misunderstandings. Here are just a few of the questions that I wish I had asked at the start:
When you can't use a speech device because you're driving, would you prefer that I talk or stay silent?
I assumed Colin would not like to listen to a one-sided conversation, but he said it was fine for me to talk. However, I have found it surprisingly hard to remember not to ask any questions that can't be answered with a nod or a headshake.
Do you want me to read over your shoulder and predict ahead to save you from typing the whole thought?
I assumed this would be helpful but was surprised to learn that Colin felt that this invaded his privacy and prevented him from controlling his side of the conversation.
In face-to-face communication, do you want me to wait until you're finished typing before I begin to speak?
I assumed that Colin would feel more comfortable, as I do, if we didn't overlap each other when we conversed, so I was surprised to learn that he welcomed overlap. He likes to type ahead while others are talking because it allows him to respond faster.
What's the most comfortable way to communicate long-distance?
When Colin first began to use AAC, I preferred e-mail and instant messaging to communicate with him long-distance because these tools restored the balance of our old conversational roles. Colin, however, preferred that I use my voice over a telephone or Internet phone system so that he didn't have to wait for me to type.
Colin is a fast thinker, a great problem-solver, and a master of technology. Although he's a fast typist now, he's already researching the most efficient technologies to maintain communication as his impairment progresses. As the disease evolves, the questions will surely change. The important thing for me is not to make assumptions but to keep asking questions.
Gail Portnuff Venable is a speech-language pathologist in San Francisco who specializes in language and reading problems in school-aged students. She shares her experiences as a family member coping with new communication challenges. Contact her by e-mail at gvenable@sbcglobal.net.
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