Our daughter Sara was born profoundly deaf in both ears in June of 2009. She failed the routine hospital newborn hearing screening test and was subsequently referred to our local hearing clinic for follow-up tests. After months of inconclusive results, Sara was finally given a sedated ABR (Auditory Brainstem Response) test which confirmed bilateral profound hearing loss.
We were quickly teamed up with a brilliant Teacher of the Deaf & Hard of Hearing, a Speech & Language Pathologist, Infant Development Worker, and wonderful Social Worker here in Victoria, BC. Sara was immediately given hearing aids, which we were told would get her used to wearing equipment on her ears, but would not do much in the way of giving her enough access to sounds to enable her to speak effectively. Wearing the hearing aids would prepare her for a cochlear implant, if we decided to go that direction.
My partner and I extensively researched various communication methods, interviewed available outreach services, and talked with many people about whether to incorporate sign language.
We also researched the deaf community because we were conflicted for awhile as to whether we actually wanted to implant Sara. Our thinking was that if our daughter was put on this earth as a deaf human being, maybe she is meant to be raised without a cochlear implant. That phase passed as we learned how truly effective the bionic ear is in enabling a deaf person to hear sounds and learn to speak clearly.
We eventually chose a specialized agency for outreach service, and decided on a Total Communication Method, which utilized ASL along with auditory/verbal therapy. Our personal belief is that our child would need a solid foundation of sign language coupled with a cochlear implant. If the CI is ever lost or not working, we believe she should have a communication method to fall back on and sign language would surely be her mother tongue as a deaf person.
In early March of 2010, we started signing to Sara...the basics that go hand-in-hand with daily routines such as ‘eat’, ‘drink’, ‘more’, ‘change diaper’, ‘sleep’, and more. Also, I would take long daily walks and point out and make the signs for ‘bird’, ‘tree’, ‘grass’, ‘water’, ‘sky’, ‘sun’. It seemed like forever until Sara made her first sign. About three months later, she offered a cute rendition of ‘bird’ that just brought tears to my eyes!
Sara was then implanted with a Nucleus 5™ Cochlear Implant in September of 2010, with switch on in October. I was told that it might be a challenge for the first little while with getting her to want to wear her CI, but that it was very child-specific.
If EVER a challenge was thrown out to me, it was during the first three months after switch on...the work, the effort...from morning to night...I thought, at times, I would lose my mind.
Struggling for twenty minutes with an extremely head-strong toddler, just to put the CI on Sara’s head, only to have her rip it off and throw it across the room. Trying, with all my might, to control my frustration, sadness and sometimes anger, keep a smile on my face, make it a fun experience...when all I really wanted to do was put the stupid thing threw a wood chipper and raise my daughter with sign language and no CI. I can remember standing in the living room one afternoon, after a morning full of temper tantrums and a processor that got chucked somewhere, now lost, and literally breaking down into a sobbing mess. My child watched as I curled up in ball on the floor, feeling totally helpless. God...how do I do this? No, seriously...how do I do this!
Just before retiring for bed that night, the song “Let It Be” by the Beatles entered my mind. There will be an answer...just ‘let it be’. My mind had become a cesspool of worry, obsessively reading books on therapy methods, having non-communication nightmares, feeling almost agoraphobic some days at the thought of taking Sara to a ‘normal’ playgroup where we would attract attention due to the CI. I was starting to lose sleep, and my anxiety was getting the better of me. To be honest, on this day, I wanted to run away. I wanted to do an ‘ostrich’ and have someone else teach Sara to talk. I was feeling burdened. So, as I drifted off to sleep, I played ‘Let It Be’ over and over in my head. Around midnight, I awoke to Sara crying, so I leapt out of bed, collected her from her toddler bed in her own room and returned her to our family bed to spend the rest of the night. As I nursed her back to sleep I suddenly recalled that I had just been dreaming.....not a nightmare, but a sort of epiphany-like dream.
In my dream, it was as though I was on an archaeological dig, chipping away at a wall. I knew that I needed to work hard at this wall and that something would be revealed. I had grown exhausted, both emotionally and mentally, as this wall just would not give. In fact it seemed hopeless. The frustration was making me grow resentful. I finally gave one last concerted effort, then stood back and just stared at this blank wall. Suddenly, a tiny piece broke away, fell to the floor, and an illuminating brightness appeared. I couldn’t see exactly what it was, just that it was the kind of light that was inviting, motivating and inspiring! I got a second wind to get back to work with a renewed vigour and ENTHUSIAM! I returned to my work, in a new way and wouldn’t you know it...this beautiful piece of artwork began to emerge...so breathtaking, it left me awestruck.
The next day I thought to try a new therapy method by putting Sara in the baby backpack, where she would be a ‘captive recipient’, and going for a walk down to the water. Why didn’t I think of this before! Sara loves the outdoors, (her first sign she learned was ‘bird), I can tie a hat on her head so she can’t rip the CI off and I can talk to her practically head to head! Win/win situation.
The following week, our therapist continued in her efforts to teach Sara the ling sound of ‘ahh’ in association with a toy airplane. Out of the blue, Sara picked up the airplane and made her first sound of ‘ahhh’! She then said ‘ahhh’ without a prompt from the therapist. Goosebumps!!
I had envisioned myself crying for joy when Sara made her first sound. But I didn’t cry. What happened was I heard for myself my daughter using her voice. In that moment, the bricks of worry fell hard to the ground and shattered into a million pieces. The confidence in the equipment, in the therapy process, in my daughter’s brain, finally took root. I had an experience and I moved beyond just believing that the sound was getting to her brain, that the Nucleus 5 was indeed working properly, that the therapy EVERYONE was doing was effective...I now KNEW!
I videotaped this breakthrough and a few people told me that Sara would now skyrocket (though slow and steady) with her speech development. Sara is now vocalizing every day, for longer periods of time and leaving her CI on because she has finally realized what it is for and is receiving benefit from it!
Since then I have found more and more ‘win/win’ therapy methods, where I am not forcing therapy on her but instead either going to her whenever she is naturally involved in something-- like bathing (so many great sounds to bring her attention to and have fun with like bubbles, the tap running, water splashing, rubber duckies and fishies, washing the hair, etc.), or placing her in a therapy situation with something that I know she will enjoy...like feeding her ice-cream in her highchair after dinner and working on the ling sound of ‘mmm’ with the word ‘yum’!!!
Sara also enjoys helping with the laundry, so I let her put the clothes in the washer, turn it on and point to the machine as she watches the clothes go around and hears the sound of the water rushing in. The sign for ‘wash clothes’ is a pretty neat one too that requires a fair bit of coordination! I also take advantage of car rides, especially travelling to and from the mainland. Ferry line ups used to be a major source of stress as Sara doesn’t like to sit in her car seat for long periods of time. I figured out that I could perform a hand-puppet show from the front seat and make all sorts of sounds and send her into giggle fits. Once again, she is a captive therapy recipient, and it is FUN for both of us!
Now, I use my imagination a lot to try and find any opportunity to make meaning of sounds, and am very animated and expressive with the little things so that I can capture her interest and keep her entertained. This the most amazing process to be involved with. It is very tiring at times, yet so thrilling, so emotionally-charged, so incredible to watch and hear. It is simply a miracle that our deaf child can learn to hear and speak with this piece of technology called a cochlear implant. Gratitude seems like too small of a word. God, The Universe--whatever you wish to call that higher power-- is, to me, truly awesome!
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