Can You Hear Me NOW?

“Take your baby home.  You have a beautiful, healthy boy.”

What a pleasant personality he had.  He was so relaxed.  An “easy keeper.”  Nothing seemed to bother him much.

Then the nurse started calling.  Dad-gum nurses.  Down-right pests sometimes.  “Have you had his hearing checked again?  He failed his initial screening.  I have to report to the health service what you did about it.  What have you done?”

We took him back in.  He failed.  But a bunch of kids had failed.  The machine wasn’t working properly.

Nurse called again.  Dad-gum nurses.  Down-right pests sometimes.  “Have you had his hearing checked again?”  Didn’t we just have this conversation?

Took him back in.  He failed.  Walked out of the room and the OB doc said, “Oh, don’t worry about it.  Look how healthy and happy he is.  He’s fine.”

Nurse called.  Dad-gum nurses.  Down-right pests.  “He FAILED.  WHAT ARE YOU GOING TO DO ABOUT IT?”

Now 2 months old, we went to his primary doc for a check-up.  The doc was dressed in rural mountain doctor garb- cowboy boots, jeans, button up and hat.  And a big smile.  Don’t forget the big smile.  “Anything else you have a concern about?”  “Oh, yeah, now that you mention it.  He keeps failing his hearing test.  They weren’t sure if the machine was working or not.”  “Well, there was a question about that for a while.  But it’s working now.  Take him back in.”

Failed.

Nurse.  PEST!  “Take him to an audiologist…. YESTERDAY!”

We took him to the audiologist.  Really?  Ever seen a 3 month old push a button or raise their hand when they hear a tone?  Yeah, don’t go to your small-town audiologist with your infant.

She made a few calls and decided we should go to the university.  Now 3 months old we took him down for a morning of testing- certain he could hear.  He cooed.  He looked and smiled when we talked to him or walked by.  He didn’t mind the vacuum in his room while he was sleeping.  Didn’t seem too worked up about a pot lid clashed behind his head.  But, he was good natured.

We wandered around the campus until we found the dimly lit room in the basement of an ancient building which housed their testing equipment.  They rarely did babies.  This was like an experiment for them.  “Hmmm… what should we do next?”  It was interesting, but less than satisfying.  In the end they decided Jack had a moderate hearing loss.  We were introduced to the “speech banana” on the hearing chart.  He wouldn’t hear it.  But, with some hearing aids he’d be just fine.

If your baby needed hearing aids, wouldn’t you get him the best?  We got the best.  Out-of-pocket.  Little pieces of digital gold.  And oh the horrors of keeping a hearing aid in a baby’s soft ear and out of their mouth!  And oh the pain in my ears and heart when I’d hug him close and the squeal of the aid would start.  You’ve heard it.  When an elderly person cups their hand over their ear to make sure their hearing aid is on?  Or when they sit next to you, unaware that the aid is not fully in their ear and the high-pitched sound pierces through your thoughts?  But that was my baby.

We read the statistics and were warned.  Divorce rate in marriages with disabled children is much higher than the average.  It wouldn’t happen to us.  And it didn’t.  We refused to look at our baby boy as disabled.  Wasn’t it just like needing glasses?  We tried to look at it that way.

When Jack was 6 months old we decided we’d take him to a research hospital.  They had a whole section of the hospital dedicated to hearing loss.  We’d see what else they could tell us.  After running a couple of tests they said, “The results aren’t adding up.  Would it be OK if we redid some of the tests that were already run at the other university?”  Six months old, full day of testing.  What more could a mother ask for?  Sure, sounds pleasant.   And I sat on the other side of the room hearing clearly the tones being played into the earphones inserted in his ears as he slept soundly.

He was deaf.  I suppose maybe it was easier learning the news in stages rather than all at once.  Deaf.  The gold-plated hearing aids really wouldn’t be of any help to him.  On top of that, he had auditory neuropathy.  The sounds that got through were in a dyssynchronous fashion.  The same word said a dozen times might sound a dozen different ways.  Language acquisition was not likely with his current situation.  They recommended cochlear implants.

We went back home with our deaf boy.  We talked to our local support about cochlear implants.  They didn’t know anything about them.  They couldn’t recommend them.  They thought we just needed to see how well someone could do with hearing aids and then we’d be happy.  So we met someone.  She was 12 years old.  She was a sweet girl.  We had her over to play with the kids one afternoon.  “How do you know if he is laughing or crying?”  she asked me.  How do you know??  You just know.  You can HEAR it.  But she couldn’t.  I took her back home and cried.

By about 10 months of age and after much auditory therapy where every interaction and toy was intentional teaching, Jack had great intonation.  Something was getting through- but not words.  I could sing “Itsy Bitsy Spider” behind him and he would do the hand motions.  But ask him where Daddy was… nothing.  He was catching on to the rhythm and tune, but not the words.  Expressive language- zero.

Something else happened around about then.  He discovered that the right ear was intolerable to use for listening.  We could sit in a quiet room and put both hearing aids in.  Happy baby.  Make a surprisingly quiet sound- immediately he would yank the hearing aid out of his right ear.  Reliably reproducible.  Something terrible was going on in that right ear.  He refused to use it for hearing.

By twelve months old we decided we needed to do this implant thing.  He was either going to have to be isolated in a world of signing, or get one of those scary implants.  We reasoned that he wasn’t using his right ear anyway, why not use it for an implant?  If it didn’t work, we’d lose nothing but money, time and effort.  If it did work, our son gained the world.

It took six months to get the doctor chosen, insurance approved and schedules aligned.  He was 18 months old when his right ear was implanted with a Med-el cochlear implant.  The “activation date” was a non-event.  That’s the day, about a month after surgery, when the external component is put on and he’s “turned on” or “goes live” or is “on-air”.  His life becomes one of sound.  The audiologist was cautious when “mapping” his speech processor.  She didn’t want it to be a frightening experience for him.  She gave us nine different settings we could progressively click through over the next two weeks before we made the eight-hour trip for our one-hour appointment to have it changed again.  We stayed for a little while shopping in the city after his appointment.  And we clicked through all nine settings in a couple hours.  “He’s not hearing a thing,” we called her.  She graciously brought us back in and gave us nine more settings.  By the end of the two weeks, he was hearing.   And I could sing “Itsy Bitsy Spider” behind his back with just his new CI on and he did the hand motions.  Big smiles!  He could hear me now!

Eight months after “activation” I journaled his expressive language.  It was about 50 words.  Two months later there were too many words to count.  And he hasn’t stopped talking since.

It’s different though.  The crucial time to integrate language into a natural “filing” system in his brain passed by with little input.  He’s almost ten years old now.  His learning is still intentional and very concrete.  Just telling him those very words would spark the question, “Wudya’ mean?”  He’s almost got it down to one syllable.  It’s his favorite phrase, “Wudya’ mean?”  “Concrete language” – that sounds like a combination of a hard surface that cars drive on and spoken English.  What do you mean?  That makes no sense.  “Makes no sense.”  Hmm… sense is like smelling, touching, hearing.  Of course it makes “no sense”.  “You are driving me up a wall with all your questions.”  How does that happen?  What kind of car can do that?  I want to see one of those!

We still have to deal with that.  We always will.  Jack always will.  It is his life.  But he is learning, and listening and talking with all of his hearing friends.

If your child is deaf, get cochlear implants- YESTERDAY!

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2 Comments

  1. Connie

     /  March 11, 2011

    Language is such a fragile thing. It is such a miracle when you think about how it all works together and God created it all!

    Reply
  2. Shelley C. Weaver

     /  March 11, 2011

    I was thinking during the last section, that the concrete language struggles are often present in kids who’ve even had complete hearing from birth. Especially in folks who are visual or kinesthetic learners (both rather concrete methods in themselves!) I had a cousin who always visualized cliche phrases and would invariably crack up, laughing at phrases like “drive me up a wall”.
    So it’s interesting what a wide circle “normal” is, and a wide wonder at all the places it intersects with “different”! So fun to read your story!

    Reply

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