Read an Excerpt
A Silent CheerAgainst the Odds
By Emily F. Roback Faye D. Roback-Jones
iUniverse, Inc.Copyright © 2012 Dr. Emily Roback and Faye Roback-Jones
All right reserved.
Chapter OneWithin the Sounds of Silence No More
* * *
And in the Beginning
Life began for me in the small town of Rocky Mountain House, Alberta, about a 40-mile drive from the Sunchild O'Chiese Indian Reservation where my parents worked as teachers. My mother told me I arrived on a beautiful Easter Sunday morning in April 1978, the second-born of her four children. She said that not only was I God's gift to her, but I would also be the sweetest little sister for my brother Michael. My two younger siblings, Caitlyn and John, would come later, but at that point in time I am sure she had no idea of the strength and determination it was going to take to raise four children on her own—one of whom had yet to be diagnosed as having a severe to profound hearing loss.
It wasn't until I was around 6 months old that my mother suspected some things weren't quite as they should have been with my verbal and physical development. I would rock my head incessantly in my cradle from side to side to such a degree where the sides and back of my skull had become bald. My cries were so soft that she had to keep me in her and my father's room so she could hear me at night if I needed attention. I had difficulty keeping my balance in the highchair and would continually tilt to one side without being well propped up. Further, I failed to respond to any loud crashes, shouts, the startling ring of the telephone, or even someone knocking on the door. My language wasn't developing at a rate my mother felt was normal, and my balance was so poor I was still having difficulty learning to walk at 15 months. By the time I was about 2 years old, my mother finally took things into her own hands. She started pounding on a lot of doors, demanding attention to her concerns about my hearing.
It wasn't until a year later, when we moved off the reserve to a small community in eastern Alberta where my father got a job teaching art, that one door finally opened. A doctor in nearby Daysland didn't quibble or argue with my mother; he provided her with an instant referral to the audiology department at the prestigious Glenrose Clinic in Edmonton. Finally, a beginning.
Off to the Glenrose
I believe that even in these enlightened times, as noted in my mother's paper, it often remains a well-known fact that
Mothers are usually correct in their analysis of a hearing problem, because they are with that child for so many hours every day. An evaluation for a suspected hearing loss with a competent audiologist requires going through channels. For a family living in the country, far from the hub of knowledge, encircled by well-meaning friends that love to give advice—who do not know what the hell they are talking about—ill-informed doctors who consider you an "over-anxious and over-protective mother," and family members who refuse to even contemplate the possibility that their newest family member could be flawed, the support that is so essential in providing a direction through the channel maze is non-existent. It is at this point, when total frustration sets in, that the mother goes through a metamorphosis, transforming from a personality that "doesn't make waves," into a seething, raging tempest. No one else is going to put out the necessary effort for her child. She must do it all herself. We witness the birth of a she-wolf.
And according to my mother, in our particular situation it also rings true that
When the mother has finally secured an appointment with the audiologist, mother and child go hand in hand; the child is excited about all the attention she is receiving, the mother is quivering with trepidation. Having already gone through denial and rationalization, the mother is now the first person to receive the shock, which confirms her worst suspicions. Her beautiful three-year-old daughter is profoundly deaf. Grief, anger, guilt, disbelief, and helplessness all converge at once, as the mother sits in stunned silence, pretending to understand the new, unfamiliar medical terms and options being thrown at her by the audiologist. Certain phrases and words stick and constantly replay in her mind: "profound sensori-neural hearing loss"; "non-operable"; "progressively deteriorating"; "damage is permanent"; "Institute for the Deaf"; "binaural hearing aids." Now she no longer lives with the question, "What is the matter with my daughter?" but rather, "Why my child?" Further analysis and audiograms, appointments and fittings for molds, terminology to absorb and understand, language programs to be planned, equipment ordered, financial worries, and waiting; all are a part of the complex maze the mother has now entered. Finally the day of reckoning arrives. The hearing aids are ready for her child.
October 3, 1981, was a day like no other for both my mother and me. While I was sitting complacently in the backseat of my family's ancient station wagon, my mother drove us on the two-and-a-half hour journey to the Glenrose Hospital in Edmonton, Alberta.
About a month earlier, an audiologist at the hospital had tested and measured my hearing levels and had stuck microphones, probes and clips in and all around my ears. These were connected to a small back box that emitted a lot of beeping sounds at varying decibel ranges, and I was supposed to let the audiologist know if I could hear them or not. She controlled the pitch, tone and sound levels transmitted to my ears on a much bigger machine in a booth that had a big window in it, so she could see me. After the tests were done, she filled my ears with some gooey pink foam, and when the substance was firm, she gently removed them. These were the first of many ear impressions that would be taken over my lifetime as my ears changed in size and shape; they were used as the basic form to design customized wax moulds for both ears, which would then be attached to my two hearing aids. It was this journey today that would see me enter a world that was going to change me forever—this would be the first day of the rest of my life wearing hearing aids.
After having arrived at the Glenrose and being led through a series of hallowed halls, my mother and the audiologist, Ms. Ivey, guided me into a room furnished with a table and six chairs. From what I recollect, Ms. Ivey's six-foot-plus frame towered over my mother, who was not exactly a short woman herself. Ms. Ivey's slender build and long black hair seemed to give the illusion of her being even taller, a giant to the eyes of three-year old.
Ms. Ivey was incredibly elegant, and at the same time she was remarkably serious about the business of audiology. Her mannerisms, her melodic voice, her gentle yet clear articulation of the spoken word, how she carried herself so gracefully across the room, and even the lingering fragrance of her perfume claim the attention of all those who encountered her. It was her air of professionalism, that magical sense of presence she possessed, that in hindsight I so admired. She made me feel so special, and I truly adored her.
Each of us eased ourselves onto one of the three well-worn chairs, with Ms. Ivey opting to sit across from me. While I quietly waited in my seat, feeling anxious for whatever was going to happen next, Ms. Ivey got up, moved around the table and stood by my right side, an image of absolute trust and knowingness. She leaned towards me, carefully inserted a hearing aid into each of my ears, turned on the switch and then stepped back. Coming from a world of the non-hearing, I was dumb-struck. At that very moment, Ms. Ivey became my unofficial goddess because she had given me my most treasured gift: the power of hearing.
For the first time ever, I heard myself breathe and then laugh. Totally enraptured by the wonderment of sound, I turned my head to the left and peered at my mother. My mother was mesmerized, and her eyes were wide as she watched my reactions. Beaming, she squeezed my left hand. I laughed again. This event would become firmly etched in both of our memories. With my mother beside me, I felt safe and knew I was at the right place at the right time—a significant member of this indisputably unique hearing experience.
Ms. Ivey informed my mother, "We'll be setting up a schedule to start working on Emily's language development here at Glenrose, but we'll also want to secure a speech pathologist closer to where you live. There is an excellent facility in Camrose."
"That's good to know! What about getting her into an early pre-kindergarten program at the school in our town?" my mother asked. "Are there any provincial grants available to let me hire a language tutor for her, or provisions for specialized equipment for hearing-impaired children?"
"Yes. There are a number of organizations that can provide financial assistance for Emily, and I'm happy to direct you to them. Her language development is delayed by about three years. It will all take time, but as a team we'll make sure that Emily's needs will be met. She has the potential to catch up to her peers linguistically in about five or six years, but she will need to have continued support throughout her education, and beyond."
Ms. Ivey went on to tell my mother more about how to ease me into the exhausting process of learning how to listen and differentiate sounds. I would also have to learn how to operate and take care of my hearing aids, along with other special equipment that I would acquire over the next few months. And of course I needed further arrangements for my on-going language development. My mother was quickly learning there would be many years ahead where we would have our work cut out for us.
Intrigued as I was by the sound and rhythm of my mother's voice and the conversation she and Ms. Ivey were having, while I explored this new world of sound, I was soon captivated by the reverberating coughs and sputters coming from the air conditioner behind the walls, the lights humming from the ceiling and the ticking of the Ms. Ivey's watch. It was so amazing—I had escaped from my world of silence!
Again my mother squeezed my hand and mouthed to me, "It's time to go," motioning the direction we were to leave. Over the years we had developed our own forms of communication with each other through a somewhat abbreviated American Sign Language (ASL), using our bodies, finger spelling, and facial expressions with explicit lip, teeth, and tongue movements. And though I was just 3 years old, we had both learned to read each other pretty well. I hopped off my seat and walked down the hall with her.
On our way out of the hospital, I found myself turning my head constantly to witness every auditory vibration that caught my attention. And there were so many. People who walked by us smacked their shoes onto the cement floors. Doors opened with a simple click and closed with a resounding bang. At the check-out counter, the receptionist and my mother played some kind of game where they would face each other and then take turns communicating with different sounds. I barely reached more than two feet in height and was unable to see much of anything else happening beyond the counter, so I focused on watching my mother.
Suddenly there was a sharp sound that startled me and made my new aids squeal for a few milliseconds. I jerked my head around and spotted a little boy who had just popped a yellow balloon and was crying for his support worker. Relieved and becoming further aware of the multitude of sources from where some of these thuds, crunches and groans originated, I was beginning to feel more comfortable as I was gradually initiated into this new world of sound.
Once we reached the parking lot, my mother swung open the back door of the car, lifted me up, and gently lowered me into my car seat. I heard my seat belt buckle snap shut, followed by the grinding wail of my window rolling a third of the way down. Shortly after, my mother got into the driver's seat and turned on the engine, and we soon left the hospital. The clatter from the city grew louder before it got quiet again. I could see my mother's image reflected in her rear-view mirror; her shoulders were quivering, her eyes glassy, and her mascara smeared as tears trickled over her cheeks.
Smiling into the mirror so I could see her reflection, she said, "Emily, my sweet. This is going to be a new adventure for both of us. We're going to have to work real hard so you can make your own choices in life, just like everyone else. You are going to be all that you can be. Okay?"
I smiled too. "Okay, Mama!"
The window slid up with a whisper and closed.
Chapter TwoLet the Games Begin
* * *
Purple Trousers Don't Make the Cut
Over the course of 18 years of education, I worked with numerous assistants and professionals, but I had never encountered a male speech therapist except at the very beginning of my language development in Camrose in 1981, not long after I had received my first set of hearing aids. My mother said he was simply a dud who wore purple trousers, a person whom she felt had chosen the wrong career path. Ultimately, my mother was the one who attempted to teach him how to actually relate to a young child with special needs. However, George was a slow learner and, unfortunately for him, my mother had little tolerance for incompetence when it came to an individual who presented himself as a professional and yet would repeatedly demonstrate a total lack of ability when working with her child's communicative development.
While I sat waiting for my mother after one of my speech sessions with George, I could see she was having angry words with the receptionist at the speech pathology clinic. "The guy is an idiot! Where did he get his speech therapist qualifications? Can you not see he doesn't have a clue of how to develop any kind of positive connection with my daughter?"
"But Faye, he's young," sputtered the receptionist. "Give him a chance."
"I have given him a chance. He's had three weeks. I've even sat in on a few of his speech sessions with Emily, and I found it really painful to witness. I had to show him how to work with her and develop a rapport with her several times, but he still hasn't clued in. My daughter is not going to be his guinea pig any longer. You get someone in who knows their business, or we are outta here."
I could hardly remember George's purple pants, but I do remember he was often late for my lessons and had very little patience. He did a great job in scaring me with his temper tantrums. I never said anything to my mother because I did not want to make a fuss, but she knew. Clearly, George was not going to last very long.
At my speech session the following week, my mother introduced me to Mary Turnbull, my new therapist. While Mary and I got to know each other, my mom slipped unobtrusively into the background. She was smiling, satisfied that Mary was a much better fit for my needs than George could have ever been.
Each speech therapy session was very similar in that they all followed a systematic routine. In a quiet room, the therapist would start off the session with open-ended questions, carefully listening to what sounds I consistently mispronounced, substituted or omitted in our conversations.
M. "Emily, what did you do on the week-end?"
E. "I pay wi' Ca-in, pay Bobbis. Don tell Mom, bu I pus Ca-in in my dawh toer."
M. "You played Barbies with Caitlyn. And you don't want me to tell your mother that you pushed her in your doll stroller?"
E. "Yeah. Mama ge' mad!"
M. "Oh, your mummy will get mad, eh? Okay, I won't say anything to her. Can you tell me what your favourite toy is?"
E. "Wagy Ann dawh. ee?"
M. "Ah, your Raggedy Ann doll. I see. She's very pretty. What can you tell me about her?"
E. "Gumpa gimme."
M. "Your grandfather gave her to you. Very nice."
I admit that there were times that I would be careless on how I used a word in conversation, because although I still thought it was great getting out of my pre-kindergarten class at school, many of those speech lessons were boring, and sometimes even hard. Being a kid, I did not exactly see what the big deal was when it came to being able to clearly articulate each and every single word exactly so in a discussion.
After our initial dialogue, the therapist would pull out a sheet of paper containing a list of consonants and vowels, and she'd place it on the table between the two of us. She would move her tongue up to the roof of her mouth to show me how to say, for example, the letter "L," which I would try to mimic. The hardest part was that even if I were making the right sounds, I could not always hear myself even with my hearing aids. I had to remember where and how I was placing my tongue against my teeth, my upper and lower lip positions and my visualization of the sounds.
"All right, Emily, let's look in this mirror and see what sounds you are saying." Mary would then hold a mirror to both of our faces so we could practice the sounds together, and I could see if my mouth was doing the same motions as hers.
"L-l-l-l-l," she would say, and then I would work on getting all the necessary working parts in the right position and attempt to repeat only the sound itself: "L-l-l-l-l-l," three or four times correctly."
"Very good, Emily! Now, let's try this." Mary would keep the "L" as the initial sound and add on a tail-end vowel for me to mimic: "La-la-la-la-la."
Again I would repeat her. If I got that right, in the next articulation Mary would place the "L" sound between two vowels, in the medial position.
"Are you ready?"
"Ala-ala-ala-ala." And off I'd go again, striving to get the sounds perfect.
When I finally got the sounds dead-on, she would give me a beaming smile and go on with another letter or sound. All of the soft or fricative sounds, such as "s," "f," "th," "t" and "v" were really hard because I could not hear them at all. Sometimes the therapist would have me attempt to sound out two or three letters at a time and then move on to individual words; eventually she'd lead me into reciting simple sentences. Every word had to be pronounced accurately before I could graduate onto bigger and more complex vocabulary.
Excerpted from A Silent Cheer by Emily F. Roback Faye D. Roback-Jones Copyright © 2012 by Dr. Emily Roback and Faye Roback-Jones. Excerpted by permission of iUniverse, Inc.. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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