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A new frequency, a new vernacular: on reverse slope hearing loss

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One Saturday I awoke, life as usual.  By that afternoon, life had begun to slide a little to the left as my son was diagnosed with neurological hearing loss. Words I never claimed as my own began to slowly insert themselves into the vocabulary of my life: disability. hearing aid. 504. child study team.  degenerative? MRI. personal FM.

How do I explain this?  I was not horribly upset by it. More like “…Oh!…Really?

I am still trying to wrap my brain around its truth.  Because I have two main thoughts running in my head concurrently. They might be at odds with each other.  The first thought is: I knew it.  I knew it all along.  I’ve been saying it for years. The other thought is: WTF?  It’s neurological?  It’s permanent?  What the heck is “reverse slope”? He needs a hearing aid?  WTF?

Entre vous into of the lexicon of the hearing impaired, its politics and correctness, its technology and test results.

Evan is almost six.  When he was a baby, he had a ton of ear infections, but he passed all his infant screenings.  He is a highly active, communicative little boy who found ways to express himself without words.  When he was two, with the support of his pediatrician, we requested early intervention for speech because he wasn’t talking.  That therapy worked and when he aged out at 3 we didn’t see the need to continue.  He pronounces all his words almost perfectly.

But there were signs, and lately they’ve been getting worse.  He is always asking us to repeat ourselves.  He insists that he can’t hear his music or the TV unless it’s turned up loud.  Our frustrations mount as he seems to ignore our instructions then claims he didn’t hear us.  Listen to what I’m telling you, Evan!!!  You need to listen!!!  I don’t want to count how many times I’ve said that to him.

It was a quiet, slow suspicion that hovered just under the radar of life.  I wasn’t in denial.  He seemed fine except for those moments — Evan for the love of all that is good and holy PLEASE turn down that TV! — so it never was the sort of thing you’d stop life for to go get checked.

When we were at the pediatrician I’d mention it casually and she was diligent to check his ears.  He always had fluid on them.  Once she did a screening that showed he had some loss in the left ear (the one that ruptured during Hurricane Sandy.  THAT was fun) but since there was fluid, she couldn’t be sure.  Bring him back when the fluid’s gone and we’ll check again, but by that time it hardly seemed urgent.  Aside from things that either weren’t that important in daily life and behavioral stuff that could just be a boy being a boy, Evan had no symptoms of hearing loss.

Or rather, no noticeable signs of hearing loss.

He did well in school. Occasionally he’d tell me he got in trouble for not listening to instructions.  This didn’t surprise me much — he’s always getting in trouble at home for not listening. He’s curious and fun and a little bit of a clown.  Still, he is not a rebellious kid at all; he truly wants to do well. He doesn’t like getting in trouble and takes it pretty hard when he does — especially when he’s in front of a group.  So while I wasn’t surprised, I also kind of thought it was weird.  This is the strange dichotomy of my son.

He was having trouble spelling, which surprised me.  He’s a very smart kid. I’m not just saying that.  His brain works in a certain way that’s just — I dunno. Different a little. He picks things up crazy fast.  Just yesterday, his violin teacher told him he’s the first student she’s ever had to memorize all the fingering for Twinkle Twinkle.  The challenge with Evan is that he won’t feel the need to practice when there’s fun to be had, life to be lived, dancing to do.  Especially when he figures he knows it already.  So he’s no prodigy.  He just knows it and leaves it at that.

Anyway, spelling.  I noticed one day that he was transposing the “e” and “i” in his sight words.  When I tried to help him by saying the sounds, he couldn’t hear the difference.

Another thing: recently, my highly creative, out-of-the-box-thinking little boy started asking for a hearing aid.  Out of nowhere.

Why do you want a hearing aid?

I think they’re cool.

How do you even know what a hearing aid is? You’re five.

I saw it in Spy Kids.  It’s like super spy gear. Can I have one?

Is this like when you wanted a ukulele?

The day I realized it was time to do something was a few weeks ago when the kids were at martial arts.  It’s noisy in studio.  Evan had a question for Master G., who knelt down to Evan’s level and spoke directly to him, no more than 10 inches away from his face.  When Evan came back I asked him what Master G. said, and Evan said, I couldn’t hear him.

I’d been hearing that a lot lately from Evan.  I didn’t hear you!  I can’t hear it! What? Huh?  

I went home and told my husband.  A few days later, my husband came to me and said, I think Evan is reading lips.

What do you mean, reading lips?

I made an appointment with our pediatrician, Dr. Y.  Luckily, this time there was not a drop of fluid on his ears.  The screening results came back the same — some lower frequency hearing loss in the left ear.  She referred us to Dr. L. for a hearing test.

How can I describe my frame of mind? I felt like the screening had confirmed what I believed all along — that he has some hearing loss in one ear, probably the result of all the ear infections.  I was expecting the specialist to confirm this and say that he will either grow out of it, need tubes, or tell us it’s no big deal and he’ll be fine, stop worrying mama.

I should have known better with this kid.  This is the kid who always surprises me.  We once took him to the ER just to be safe when he had a cough, sure they’d just say it was nothing.  It was croup and he needed breathing treatments.  He acted strange once after eating cashews — turns out he needs an epi pen.  Another time he had a cold and a cough — pneumonia.  I mean, really.  For a kid who lives life so out loud, when he’s really suffering he’s all I’m cool.

So Saturday morning, Evan climbed into the super secret space sound booth (that’s what we called it, anyway) at Dr. L.’s, put super space headphones on, and had his hearing tested.  When he was done, I fully expected the audiologist to say he had slight hearing loss in one ear but it’s no big deal and he’ll be fine.

He has low frequency hearing loss in both ears.  It’s inner ear, which means it’s neurological — not conductive.  It’s not a result of ear infections.  This may have been here since birth.  It may or may not be degenerative.  He’s going to need a hearing aid and a personal FM device in school. 

Say what now?

As the words slowly rolled over me and into me, I felt the sting of tears in my eyes and a horrible vindication in my gut.  I looked into her compassionate eyes and said, I knew it.  I’ve been saying it for so long.

She nodded knowingly and assured me he’s going to be fine, that he has a lot of hearing and this is going to make it better.  She said something about how moms tend to do better with this than dads, which made me laugh.  She answered my questions.  We went back to talk to the doctor again.  They told us to come back in two weeks to confirm the results with another test and talk about next steps.  I got the feeling they were easing me into this, gently sliding me into this new world of language and perception, vocabulary and technology.

Which was true.  I went home and told my husband, armed with the papers they gave us explaining Evan’s hearing loss.  A new nomenclature entered the frequency of our home:

26-40 dB Hearing Loss causes greater listening difficulties than a “plugged ear”…

can miss up to 50% of class discussions…

negative impact on self-esteem as children are accused of not listening

low frequency hearing loss is only in 1% of the population

child will benefit from a hearing aid and a personal desktop FM system….

hearing aids must be programmed correctly for low-frequency loss or further damage can be done...

child study team to discuss a 504 for your child’s disability….




Hold up there.

As we began to research Evan’s condition we came to understand that this may be a little more complicated than we originally thought.  Because low frequency — also known as reverse slope — hearing loss is relatively rare, it’s difficult to program a hearing aid for it.  We need to be sure that Evan’s audiologist will be able to fit him with one that won’t over-amplify higher frequencies and do further damage.  It’s possible that it’s degenerative.  So there’s that.

There are a lot of questions and a lot of things we have to figure out.  And of course, there’s my little boy, who needs to wear a hearing aid for the rest of his life. How will he take that?  Will kids make fun of him?  Will he be self-conscious?  But one thing is for sure: God’s been here the whole time.

I was driving the other day and a snippet of that song Whom Shall I Fear by Chris Tomlin came on.  I know who goes before me. I know who stands behind.  The God of Angel Armies, is always by my side.  The One who reigns forever — He is a friend of mine.  The God of Angel Armies is always by my side.

It was just that little part of the song I heard.  Immediately, the Holy Spirit got my attention and I knew it was God speaking to me, assuring me, I go before you.  I stand behind.  I am always by your side.

It was a few minutes later that I remembered.  A random conversation out of nowhere.  Before all this talk of hearing loss.

Mommy? Can I have a hearing aid?

Why do you want a hearing aid?

I think they’re cool.

How do you even know what a hearing aid is? You’re five.

I saw it in Spy Kids.  It’s like super spy gear. Can I have one?

Is this like when you wanted a ukulele?

He shrugged.

Are you having trouble hearing, sweetie?

He gave the ambiguous shake of his hand that in Evan-speak means, maybe.

Okay, well we’ll ask Dr. Y about it next time we see her, but I really doubt you’ll need a hearing aid.

Except he does.  And God knew it.  And God prepared his little heart for it.  The day we told him he was getting a hearing aid — dude.  You would have thought it was Christmas morning.

Thank you, God of the Angel Armies, for being my friend and my armor.  Because of you, I know I can go and be the Warrior Mama I need to be.  I know that my family and I can march into this new vernacular of our lives in full confidence that the airwaves here will be fresh with you, the frequencies will carry sounds of praise, and that You have a plan for each of us.

Evan is in Wonderful Hands.




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Sold out Jesus-freak, mom of 2, wife, Christian Life Coach and speaker, friend-in-need-of-grace, writer of stuff.

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