Our story begins in the late summer of 2000. We were the parents of four children with a fifth on the way. Our fourth child was not developing language as quickly as our other children had. An initial visit to our pediatrician yielded reassurances that our expectations were too high, given the early language acquisition of our other three children. We breathed a sigh of relief, adjusting our internal calendars on development.
By the late fall, I was concerned. 4 of 8 had very little language and what she did have was practically unintelligible. We could generally translate her simple messages, but if we hit an impasse of understanding, 4 of 8 would explode in frustration and tears. I hauled her back to the pediatrician, looking for answers. The pediatrician checked her over, declared her healthy, her ears perfect and her development stalled. She recommended we get in with a developmental specialist, preparing us that there were any number of behavioral issues that could come to light. As I headed out the door, she threw in as an aside that we should do a booth hearing test, just to get it checked off the list, and that we should start speech therapy as soon as possible. I called and scheduled the various appointments, looking ahead to the looming date with the developmental specialist, never once thinking that our search would end as soon as it would begin in the hearing booth of the audiologist. We had a few sessions of speech therapy, the therapist sweet and kind, telling us that she was confused as to why 4 of 8 was not progressing quickly, given her compliance and cooperation.
The audiologist appointment was the first event on the calendar as we began looking for answers to 4 of 8's language delays. Thinking that hearing loss was not the issue, my husband was at work when I sat with 4 of 8 on my lap in the testing booth and witnessed first hand her non-response to the high frequency sounds emitted from the speakers. The test was brief, the audiologist clinical. "Bilateral high frequency sensori-neural hearing loss," he intoned. "We'll want to get an ABR to make sure and I'll put her on antibiotics to make sure there is no latent ear infection, but I think we'll find the same thing again." I was sent on my way with a prescription and a phone number for another testing site, reeling from what I had just been told, phrases and terms describing 4 of 8's situation sounding like foreign language. I called my husband from the car, trying to tell him in some sort of intelligible outline the information I had been given. Was this just an ear infection? Why hadn't the speech therapist noticed that hearing loss was a possibility? What was an ABR? What did bilateral mean? How could she have hearing loss when she reacted to the sound of the lawn mower, the telephone and the sound of her uncles' voices? How did we go from her doctor saying her ears were perfect to this?
A few weeks passed and we repeated the booth test, the results coming back the same. We moved on to the ABR and the OAE tests, finally learning that the acronyms stand for 'Avoked Brain Response' and 'Oto Acoustic Emissions', both of which can reveal the specificities and extent of the hearing loss. 4 of 8 had to be put under a light general anesthetic for the tests. The clinician who conducted the tests was compassionate and caring, telling me as she interpreted the results, "Remember, you're walking out of here with the same child that you walked in with; now you just know a little more about her." A finding of moderate to severe hearing loss of unknown cause was cataloged, another appointment for the fitting of hearing aids set with the audiologist. We were about to enter a whole new world.
In retrospect, a hearing loss diagnosis feeds on the naivete of the parents. Insurance companies generally do not pay for hearing aids and so parents find themselves making a huge financial investment in the th0usands of dollars while still in shell shock over both their child's diagnosis and the price tag for hearing aids. We jumped in with both feet, wanting to do anything we could to give 4 of 8 a chance at hearing.
We were wrong, woefully wrong. 4 of 8 was at first intrigued by the hearing aids, then grew to hate them. I now realize that her brain, a place that had been fairly quiet and peaceful, was now bombarded with nonsensical sound, scary and disconcerting. I would put on her hearing aids in the morning and within a couple of hours, she would throw fit after fit, wanting me to take them off. The speech therapist decided to take a new job and I realized we had made virtually no progress at the weekly sessions. 4 of 8's behavior continued to spin in a furious whirl, frustration and tears marking the better part of our days. The 'experts' we had met with in this process had all made it sound so...easy. Where were the results, why was she so frustrated, why couldn't I make this work?
We continued in this cycle of frustration and stagnation for several months. I spent many an evening poring over websites, looking for new information. 4 of 8 seemed to so badly want to communicate with us in a verbal way. We were using a few signs from ASL, but given that 4 of 8 was the only family member, even including extended family, who was hearing impaired, it seemed that signing was not the best way to go for her. I tried to get some grasp of ASL, TC, Cued Speech and all the other tags and buzz words new to my experience.
I began making phone calls at first light. The news just kept getting better. The therapy group, now known as Hearts for Hearing, actually sent a therapist to our area once a week so that she could meet with patients in our community. Appointments were set. I felt like I might be able to breathe again.
Our first session with Wendy DeMoss is still so vivid to me. I had made lists of words that I felt 4 of 8 was either communicating or understanding. I had written up a little bio of our experiences, heavy with emphasis on what all I felt 4 of 8 was accomplishing. Wendy graciously took my sheaf of papers, crouched down eye-level with 4 of 8, and began chat. 4 of 8 simply stared, her blue eyes fixed on Wendy, her pacifier firmly in her mouth.
"Do you love this child?" Wendy asked me. "Of course, we love this child, we're crazy about this child, we'd do anything for this child," I quickly responded, my mommy defense systems up and alert.
"Then let's start by getting rid of the pacifier and getting her potty trained, don't you think?" Wendy said.
And then it hit me. In trying to protect 4 of 8, in trying to validate her, in trying to make accommodation for her hearing loss, I was already sabotaging appropriate developmental thresholds. She was over 3 1/2 years old at the time, just a couple of months away from her fourth birthday. I was allowing her to keep a binky in a mouth that was already mostly mute. I was assuming she couldn't pick up on the intricacies of toilet training, even though she had not shown cognitive delay that would make potty training her inappropriate. In that flash of a moment, I discovered that to love this child to the highest level, I was going to have to ask her to do more, I was going to have to push her, I was going to have to become both advocate and coach. And in that moment, I threw myself into lockstep with her AV therapist. We were going to be a team.
We learned the hard , expensive way that all audiologists are not created equal. The expensive hearing aids we had purchased the year before were completely inappropriate for 4 of 8's hearing loss. The audiologist from the year before was more experienced in dealing with the senior population. We were now in front of a pediatric audiologist with Hearts for Hearing and it was a completely different experience. Soft material ear molds were ordered. An FM system was purchased. Hearing aids appropriate for language development were acquired, bringing our total price tag for hearing technology in a 12 month period to over $12,000. We began weekly sessions with Wendy. We began doing daily therapy sessions at home. We began talking, talking, talking to 4 of 8. We began asking her what she was hearing. We started with simple things, asking her what sounds a cow makes, having her emulate the oinks of a piggy. We made progress, we regressed, we cried, we laughed. We doubted ourselves and we were filled with hope. And we stayed on the journey.
It has been over seven years now since we learned of 4 of 8's hearing loss. I found myself reflective and grateful as the anniversary of those early days passed earlier this spring. 4 of 8 has made tremendous strides through the careful direction of the amazing people at Hearts for Hearing. Because we moved out of the area, we now continue to meet with Wendy on a weekly basis through Skype for what we call 'tele-sessions'. 4 of 8 has areas in which she has made tremendous progress; she has areas which continue to be a struggle. I have days I grind my teeth, I have days I marvel at her marvelous spirit. I recently posted these words over at BlogHer, trying in some small way to sum up the emotion and privilege of raising this child:
"That truth is this: the experience of raising a child with a special need reveals the strengths and weaknesses of the caregiver's heart. I had to deal with wanting immediate results in her therapy, only to learn that the flower of her potential blooms a bit more slowly and so reveals its beauty in its own time. I learned that I am stronger than I thought I was when it comes to getting 4 of 8 what she needs, when it comes to appropriately protecting her and pushing her. I learned that my heart is softer, that I feel her hurts more strongly. I have learned afresh that some people are amazing and kind, and some are, quite frankly, jerks. I have at times surprised myself at my toughness and frustrated myself with my hand-wringing.
And through it all, an incredible thing has happened. This hearing loss has come not to feel like a 'loss' at all, rather, an astonishing experience for us as a family, an opportunity to meet other incredible families, to interact with a community of therapists who coach and guide and love, to have a view into a window of what I've called one of humanity's most common miracles, the miracle of language. It has shifted from 'loss' to 'gift'--astounding. And it is so intrinsic a part of who 4 of 8 is, how it has shaped her, how she experiences her world, that it has become a beloved part of who she is. And therefore, of who I am."
It is my hope that the retelling of our early story here can help soothe, help equip, help create a sense of community amongst those parents who are dealing with a hearing loss diagnosis. Our story is not complete--we are in the middle of an on-going process, replete with decisions about education, therapy goals, areas of progression and areas of challenge. 4 of 8 experienced a hearing drop 3 years ago and for a season was a candidate for a cochlear implant. Her hearing levels then came back up. We are still very much on the path. But if we have some comfort, some insight to offer, it is our hope you find your way here.
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