Our story is a familiar one. Our oldest son (now 7 years old) at two and a half years did not have much language and seemed ‘in his own world’. We were first time parents and while we were a little suspicious, he responded to enough sound our alarms were not tripped. Little did we realize that his increasing frustration and predisposition to hitting and biting were directly related to his inability to effectively communicate and be understood. All the other more seasoned moms would say, "Oh don't worry, my kid didn't talk until he was 3... boys are slow in developing speech and language… he's fine." Finally, a heroic preschool teacher gently suggested we get a speech screening. Hearing loss was the furthest thing from our minds.
Months later, after many tests, colds, and false hopes, our three year old got his diagnosis- a new term we’d never heard of called “sensorineural hearing loss”. Translation - he was hard of hearing forever, cannot be fixed, and he needed hearing aids pronto because we had unintentionally squandered his most important ‘crucial language learning years’.
With no hearing loss in our family, we thought nothing of the fact that the nurses in the hospital tested and re-tested our son many times. They said the room was too loud; that's why he kept "failing", so they took him away in the middle of the night, brought him back and said all was well. It has been of some consolation since to meet several other similarly guilt-ridden parents who have had the same thing happen where their kids "pass" newborn hearing screening, but shouldn't have.
We were in no man's land where all the checks and balances that happen with newborn hearing screening referral did not happen for us. No one called us to follow up or tell us what to do; we were paddling our own lonely canoe and it was a boat that didn’t come with the nav package. With a six month old and an unexpected bonus baby in the oven (another bombshell dropped within weeks of the diagnosis), we were overwhelmed. The speed to which we had to become experts was unforgiving, but it did help to distract us from the underlying sadness we felt. The truly heartbreaking grief came nine months later when our third son was born and also diagnosed hard of hearing. By that point I understood the implications and despite the fact I knew they would both be fine, I was devastated and couldn’t fathom how I would carry this responsibility times two. I think for some people a subsequent child being diagnosed is easier, because you know what to do, for me it was considerably harder.
I could write a chapter on each facet of the roller coaster we have been on: the grief; the guilt of feeling grief; the guilt of not acting sooner; the stress of making choices we knew so little about; the disappointments of trusting professionals who let us down; the anxiety of not wanting to mess up; contending with heavy-handed opinions of what others thought we should do; the learning curve; the jealousy you feel of your friends with kids; the constant worry you shoulder about your children’s progress, finding the right professionals to support your kids; the fear of overlooking the needs of your typically hearing child; finding other parents of kids who have hearing loss you actually connect with; the acronyms, so many acronyms; and maybe the most daunting of all- learning how to navigate the sink or swim maze of special education…
Sometimes it feels a little like our hard of hearing kids are a forgotten and misunderstood tribe. They are a few decibels short of qualifying for scholarships offered by DHH organizations, even though they wear their technology during all waking hours and their aided levels are the same as their pals with more severe loss who do meet the criteria. They are not deaf enough to qualify for programs geared towards the hearing loss community, and their technology and therapy is seldom covered by health insurance. It’s hard to find studies and books where they are the actual focal point. Well-meaning professionals and individuals who do not understand their hearing loss routinely minimize their needs because “with their hearing aids they can hear… right?” Or the insinuations of, ‘No biggie, they are ONLY hard of hearing.’ We spend a lot of time subtly downloading everyone from the soccer coach to the classroom teacher with a conversation typically including, "Well yeah, sort of like glasses, but unlike glasses, hearing aids do not restore the equivalent of 20/20 hearing. There are evil dark forces in the world called distance and background noise and here's how they are going to need your help...."
We hold our sons to the same expectation and accountability as their typically hearing brother and classmates. However, in order to do so we have had to learn a new set of skills and have come to rely on an awe inspiring and carefully selected village of professionals who support our kids and us. We work overtly as well as subtly behind the scenes to minimize the stigma, the perception of limitation, and hurdles they might face by empowering them with solid skills, pride, and confidence. Most days we rock at all of this some days we just get by. This is an important part of our lives that we’re loud and proud about, but it does not define our lives or our children’s. Our kids’ hearing loss is no longer in the driver seat; it is now along for the ride, something really hard to imagine a few years ago. We’ve had the benefit of having enough time now to see the wonderful fruits of our labor in the boy’s incredible progress which makes us feel less like we’re standing at the edge of an unknown cliff, unsure of what the outcome may be. In a few years they will no doubt tell us what we could have done better, but for now we'll trust our instincts.
As grateful recipients of the flashy breakthroughs to the unrecognized (but equally important) advances, we are research’s number one fan and revel in the prospect of what lay ahead on all fronts. Hearing Health Foundation’s approach to unite all these separate research entities in the field and to share their cumulative knowledge for a common goal of finding a cure for deafness resonates with me and fills me with real hope- like this might actually happen in my lifetime kind of hope! It is a thrilling and profound choice in the basket of options parents would have for their children and which my children could have for themselves.