I am excited to introduce a guest blogger for the week, Margaret. She has been working with identified adults in need of assistance on a day to day basis for the past few years and is here today to talk a little bit of how different ways of communication is essential. Take it away Margaret!
Communication is essential to our lives and how we interact amongst each other. Now please do not mistake “Communication” for “Speaking” as they are not mutually exclusive. One can communicate with a look, a gesture, a word, or a machine. It would not be correct or wise to conclude that just because someone cannot speak means they cannot express themselves. Certainly there are those who may not express themselves fully or are in need some help from others in the process, but anyone can learn independently to share what they have to say with the world.
Take for example a young woman, whom I shall refer to as Amy, I have come to know quite well over the past couple of years. She had learned over the years that her inability to verbally speak was a great way to have others communicate for her. It was not that she was not expressive, but rather the opposite. Though unable to formulate words other than “huh,” “yeah,” and “mum,” she is adept to vocalizing, using her volume and tone to share pleasure or displeasure at any given moment, which many can find off-putting or confusing. But, it is by her vocalizations that she is able to make phone calls with the people in her life, done so by having whoever is with her during the call relay every detail of the day to the receiver, to which that person on the other line would repeat these facts back to Amy for her to respond (often with great enthusiasm) to the various activities she participated in. In public settings, Amy would often look to others to make statements or answer questions that were not a simple “Yes” or “No” question. While having a limited vocabulary in a modified Sign Language helped her communicate some basic needs, such as “Help,” “Bathroom,” “Food,” and “Drink,” there was much to her that we knew she could be telling us.
Now, here I will share briefly one practice being used for people in similar situations who cannot speak or speak clearly, which is facilitated communication, or the assisting of an individual who is typing or spelling out words on a computer, iPad, or Alphabet Chart that he or she wishes to say.
A controversy with this method is the misunderstanding that the person facilitating this is guiding or forcing the particular letters to be typed while holding onto the arm of the one typing, so what is being said are not the true words we are meant to hear. Having been trained in directing and utilizing facilitated communication, I can assure you that the image above is not accurate as to how one approaches. The person who is typing ideally knows how to type and what they want to type, and will actively reach for the correct letters necessary for a word they need or want to convey. Oftentimes, this individual may have difficulties processing and need to “reset” before they reach out to hit another letter. This is where the facilitator uses their hand as a support (using the palm of our hand and not gripping as the photo indicates) to hold back the arm in order for the one typing to stop and think about what letter it is they need to press next, so that they may proceed and reach out to select the correct letter. When this “reaching out” occurs, the person supporting does not actively hold back or push forward the hand to try and control what is being typed.
Now that I have gotten that out of the way, due to Amy’s fine motor skills, or lack thereof, typing out letters to spell proves to be a difficult task, as well as being able to differentiate some of them by their appearance. Because of this, the above form of facilitated communication would actually further limit her ability to communicate. Instead, we have had the pleasure of using a wonderful program for the iPad called Proloquo2Go (unfortunately not a free application when used for its full potential), and we have given her a voice that she can control. Using images to represent a word or phrase, we have given a source of ways to express needs and wants to anyone, and not just those of us who knew her enough to recognize her vague vocalizations and modified signs.
The success of this program has been made very clear when, after a wonderful and very new trip down to Florida, we gave her a series of phrases that simply described what she did during this vacation. Then while on the phone with someone, she was able to say “I went to the ocean for the first time,” or “I rode on the Big Thunder Mountain Railroad” or “I stayed at many hotels” without needing others to speak for her. Through this device, she has found her voice, and found how receptive people can be when they are able to respond directly to her. There is no greater joy than seeing someone so lost in her “learned helplessness” (ie letting others speak for her) discover just how communicative she can be.
Thank you for sharing your expertise Margaret!
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