Friday, January 23, 2009

On Being Hard of Hearing



Can he hear anything at all?

We get this question quite frequently, and it serves as a constant reminder that most people don’t really “get” hearing loss. One glimpse of those blue and white earmolds in our son’s ears shows the presuppositions of those who believe that hearing is all or nothing. A “Mr. Holland’s Opus” scenario of clanging pots behind a child’s head and observing no response. There are certainly many children who are deaf, those who (without amplification) would not startle at pots clanging or hands clapping. There are also many children who can easily hear these sorts of sounds, but struggle to hear the softer sounds of human speech.

The difference between being deaf and hard of hearing is not a black and white line, as shown on an audiogram. It is a continuum of gray, and a single child may well be deaf in one frequency and have normal hearing in another. And a severe/profoundly deaf child can have access to the auditory world through the use of a cochlear implant. The guesses of those random people we meet in the store, or at the park, can lead to rather humorous episodes. We see lots of wildly gesticulating hands and over-exaggerated smiles directed at our boy.

People assume he cannot hear them at all, and if we use the word “hard of hearing,” we get blank stares. Apparently, the general public only associates that term with an aged grandfather cupping his hand to an ear. On the flip side of this equation, when people notice he can “hear” without his hearing aids, they believe the diagnosis of hearing loss is hugely exaggerated. So, what does it mean to be hard of hearing?

Hard of hearing children are sometimes on the “borderline.” Some are on the borderline of requiring hearing aids with a slight/mild loss and some are on the borderline of needing a cochlear implant with a moderate to severe hearing loss. Being stuck on the borderline (in either scenario) is quite stressful, as knowing the most appropriate course of action is not clear. We are quite fortunate and are not close to any borderline- stuck squarely in the middle of hearing aid territory with a pure-tone average in the moderate range. Hearing aids help our son quite a lot, though don’t give him “normal” hearing.

Hearing aids only amplify the sounds and cannot improve on sound distortion. The cochlea has “inner” and “outer” hair cells. Mild to moderate losses typically have intact inner hair cells and damaged outer hair cells. As losses approach 50-60dB, the inner hair cells are affected and significant distortion of sound signals can occur. The greater the hearing loss, the greater the distortion becomes. Audible is not necessarily intelligible.

Hearing aids also amplify EVERYTHING. This means the squeaking chairs in my son’s future classroom, the pile of Legos being dumped on the floor, and the hum of the air conditioner vent above his head. Background noise is our greatest challenge, as Nolan goes from hearing us quite well in the quiet of our living room to not hearing us at all (simulation here) in a busy restaurant.

I suppose the greatest danger of the idea that hearing is “all-or-nothing” lies not with the reactions we get from the public, but with the reactions of pediatricians and parents who have a child that has “referred” on the newborn hearing screen. There is a huge lack of follow-up to failed screens, most likely caused by pediatricians who are eager to reassure the parents that the cause is probably fluid in the ears. We received this thought from several medical professionals. These opinions, coupled with the observation that a baby startles at loud environmental noises lead many parents to assume the child’s hearing is normal. We had this scenario with Nolan- failed referred hearing screens and an obvious response to loud noises. Parents might not want to risk sedation for an ABR test when the pediatrician is fairly confident there is nothing to be worried about. To any wavering parents out there, early identification of any level of hearing loss is key!

9 comments:

Julie said...

Leah,

What a great post! So true... so true.

That simulation you linked is really helpful. I want to send it to a big list of family and friends!

Carry on :0)

Julie

Lucas'Mommy said...

The simulation was very interesting! This is a great post. It's so hard to get others to understand the complex world of hearing loss. Thank goodness for blog friends who completely understand though! It helps us maintain our sanity, huh? :)

Kristen@nosmallthing said...

Leah, this is a great post.

I have to say that we have been really lucky with our pediatrician...very cautious and helping us to rule out all possibilities. He was the one that asked me to get Henry tested...I thought it unnecessary. I thank God he recommended testing. I don't know how long I would have gone on without having him tested had the Ped not said something.

I can understand why people have a hard time understanding hearing loss...it confuses even me at times. Henry's loss is SO complicated. But I should know more than I do.

Christian's Mommy said...

Leah, what a great post....thanks for sharing. It's hard for even us severe/profound families to grasp what the borderline folks go through.

Loved the simulation sites btw!

Shannon said...

Leah-
Thanks for this post. My Nolan has had his aids for 10 days and it has been a struggle. He loves to pull them out and especially separate the earmold from the earhook. Being that his loss is mild/moderate I think it will be quite a while before we see a difference in his speech. Thanks for understanding our challenges!
Shannon

Julia said...

Wow -- great post! And a lot of your comments apply to a sev/prof kid with a CI. In many ways, such a child hears and performs like a mod kid with aids -- hearing remarkably well in some settings, and struggling in others.

AimeeTheSuperMom said...

GREAT post! It's like you've taken the words out of my mouth time and time again.

The loss to follow-up rate in TX is staggering, so much so that there is now a state council dedicated to improving the follow-up rate. I've enjoyed being a parent member of the council.

Deb said...

I was born in Paris 1956. There was a rubella epidemic. I am bordeline severe hard of hearing. we came back to DC 1958. At children's hospital, I was diagnosed when I was 3 with 20 words in my vocabulary. My mother wasn't quite sure what was happening with me, my being retarded was a possibility. When fitted with a body aid, I began to add words. We went back to France in 1960 and my first fluent language was French. Came back to US in 1968, fitted with behind the ear aids in 1970. Wow, what a difference...I have experienced the switch to digital in a close and personal way.

susannah said...

this is SUCH a great post. really really great.