Welcome to another edition of the What I’d Like For You To Know series. If you’re new here, the idea behind this series to is to ask women to share something about a specific life challenge or circumstance, addressing some of the misconceptions and (most importantly) telling us all how we can reach out better.
Note: To keep things simple, Julie writes about her kids using their birth order number as a nickname. "4 of 8" is her daughter.
Here is their story.
We sat, 4 of 8 on my lap, in a hard plastic chair in the confining little room. I looked through the thick glass wall I faced, trying to discern the expression of the audiologist on the other side. Tweets, beeps, high squeaks and low rumbles issued from speakers mounted in the corners at unpredictable intervals.
And 4 of 8 seemed oblivious to it.
I was about to be told that my child had a severe hearing loss.
Our path to this little room had begun routinely enough. 4 of 8’s language at the age of 2 ½ was not in keeping with the speech development I had experienced with her older siblings. A trip to the pediatrician’s office yielded reassurances that my expectations were set too high, that she seemed healthy, that her ears were clear and her motor skills at age level. At my insistence, the pediatrician decided to play along and scheduled us for a round of speech and development evaluations, with a routine side trip to the audiologist. It never dawned on me she might not be hearing us.
Hearing loss is the most common birth defect in the U.S., affecting 3 babies out of 1,000. Add to that number the population of children who go on to develop conductive losses (chronic ear infections, illness, etc.) and that number soars to 15% of school age children. Obviously not all children have enough loss to warrant intervention through hearing aids or cochlear implants, but a steady population of children with hearing issues grows each year in this country.
One of the reasons for my complete shock at 4 of 8’s diagnosis was my misconception that hearing impaired means completely deaf. Actually, 95% of all hearing impaired individuals have some level of residual usable hearing. 4 of 8 would react to the lawn mower, to a loud noise, to a telephone. Her greatest level of loss is in the high frequency range, the levels where most human speech takes place, hence her lack of language development.
I was also unaware that the challenges of hearing loss are not just that sound is quieter, but that sound can be morphed and muffled. 4 of 8 perceives our speech as sounding something like the grown-ups in the Charlie Brown cartoons, a soft, warbling cadence in which vowel sounds are the easiest to discern and non-percussive consonants the most difficult.
4 of 8 was just over 32 months old when she was diagnosed. We entered a whole new world of decisions for her: what type of hearing aids, what type of practical approach toward her education, what philosophical approach to our parenting. We learned that most insurance companies do not cover the cost of hearing aids, which usually run in the price range of $4000 to $8000. Yes, you read that right; insurance does not cover hearing aids. Viagra, yes. Hearing aids, no. We were hit with so much information, so many decisions and so many questions.
We also entered a political mine field of which we had been completely unaware. To us, it seemed obvious that if there were technology and therapy available to help 4 of 8 make the most of her residual hearing, to help her learn to listen and talk, then, just as we would provide a kid with glasses to help them read the blackboard, so we would provide 4 of 8 with these resources. But part of the hearing impaired community believes vigilantly that individuals with hearing loss comprise their own unique group, noted with the moniker of Deaf with a capital D, American Sign Language as their native tongue. We have received criticism for choosing to use technology and Auditory Verbal Therapy for 4 of 8, being told that we are keeping 4 of 8 from experiencing her own ‘kind’. In the midst of her diagnosis, to so passionately desire to give her every advantage and opportunity, those opinions were wrenching. I do not pretend that I know what approach is right for every family. But now, over seven years later, we know that we were guided to make the right decision for 4 of 8, choosing to raise her as a hearing child, with challenges, yes, but with amazing opportunities to leverage technology and therapy. If 4 of 8 would like to learn American Sign Language (ASL), we would be happy to help her achieve that goal. But as she has said to me, “I like to talk.”
I am often asked if we have considered a cochlear implant for 4 of 8, the bionic-esque device that taps the auditory nerve and delivers sound frequency directly to the brain. The FDA has strict regulations on who can be considered a cochlear implant candidate and 4 of 8 at this time falls just below their thresholds. However, if a time comes when she could be considered for the surgery, we would be delighted. Cochlear implants, with appropriate therapy, can be considered modern magic. We have seen incredible results amongst several of 4 of 8’s peers.
But perhaps more than the statistics and strategies, there is one truth I want you to know, a paradigm shift that I hope brings a fresh perspective.
Through it all, an incredible thing has happened. This hearing loss has come to not 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 is has become a beloved part of who she is. And therefore, of who I am.
To read more of Julie’s posts, visit her blog, Octamom. Additionally, click here to see a photo-journalistic walk through 4 of 8’s experiences, and click here for more information about their therapy group, Hearts For Hearing.