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Today’s blog chapter contains contributions from Karissa Riter, a speech therapist with Wendell Foster’s Campus’ outpatient facility for eleven years.
Imagine you cannot speak. You have no way to say what you need or want: a drink of water; food; that you hurt. You cannot verbally tell someone your name or ask anyone how he or she is doing. You must use another means of communication, perhaps gestures or sign language; or maybe it’s a language all your own, developed between you and your caretaker or family member over the years. You may even be able to write it down, but what if you have cerebral palsy? You may be unable to do so. Perhaps you use body language, such as gestures; but what if you can’t move any part of your body?
First, you’d have to gain someone’s attention; remember, you can’t speak and you have limited movement. You may be able to vocalize with a loud sound from the throat that may sound like a cry or yell which should gain a caregiver’s attention. Oh, and you communicate only through eye movement to answer “yes” or “no” questions; eyes/eyebrows looking up means “yes” and eyes/eyebrows looking down means “no.” The caregiver comes over, and so begins the twenty, thirty, fifty questions that become part of the guessing game to figuring out what you need or want. Do you want to talk about hygiene? “No.” Do you want to talk about activities? “No.”Do you want to talk about food and drink?” “Yes!” Progress! Well, yes and no, because now we start a new game of twenty plus questions as the caregiver goes through the list of food and drink items until s/he guesses the correct one to generate a “yes.”
Do you think that would be frustrating or aggravating? Would your patience be tried? For someone who doesn’t have a voice of his or her own, it would indeed. Meet Denise.
Denise arrived to Wendell Foster’s Campus (WFC) in 2008 after living in Texas where she still has family. An Owensboro native, Denise returned home to be closer to her sister and nephews. She arrived to WFC lying in a wheelchair on her stomach; she literally faces the world head on every day! Denise’s only communication: eye gazes indicating “yes” and “no” responses. She’d never told her nephews or any of her family members that she loved them. Karissa Riter, her speech therapist, first met Denise through a video which was provided from Denise’s previous residential home in Texas. Karissa’s first concern anytime she meets a new patient is “how do they communicate?” Through this video, she learned about Denise’s eye gazes, but also that she had a communication book which required assistance from her communication partner. When all else failed, Denise would wear a head band with a laser pointer attached and point to the object which she trying to communicate in the book. Tiring. Frustrating. Time-consuming.
Denise let Karissa know upon her arrival what she wanted: an easier way to communicate. Communication devices were available but to operate it, one uses a finger or knuckle to press a menu panel to select the topic or phrase desired to activate the device to “speak” the selection aloud. Because of the unique wheelchair design and Denise’s severely limited mobility, creativity was required so she could access a communication device that didn’t require touch to make it talk for her. A unique new device became available shortly after Denise’s arrival to WFC. This device contained a built-in camera that scans the user’s eyes which maneuvers a mouse on its screen. If there was a body part Denise could control and use the best, it was her eyes! Suddenly, her communication possibilities are limitless!
Denise took to her communication device like a duck to water! She tells anyone who’ll listen about her family and how she feels. Denise socializes to find out what you’ve been up to, how the weekend was, and even shares the latest Campus gossip. And the jokes! An outgoing and fun gal, Denise even expresses her wicked sense of humor through her device. She even volunteers reading to local elementary students, and now, says to her nephews “I love you.”
Denise’s personality shines brightly through her newfound “voice,”a beautiful spirit she shares freely with everyone she meets. Through my few observations, I enjoy the opportunity to meet and get to know her better.
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