Sunday, December 27, 2009

Still playing our favorite listening games

The first informational packet from our audiologist included the web address of the John Tracy Clinic in Los Angeles, CA. Hungry for support and resources, I eagerly enrolled in their ten-session distance learning program.

Each month, I completed an online questionnaire and printed another packet that helped me decode the mysteries of my daughter's hearing.

At the end of each lesson is a section of games and activities. It was John Tracy Clinic that prompted us to write our first experience books, Catching Lightening Bugs and Watching Daddy Race. They had us playing "will it float?" to expand vocabulary. They helped me incorporate sound and listening skills into each day.

We still play variations of our favorite game from the JTC preschool program: freeze dance. Tonight it was more of a hot potato game while I played the piano. All versions include stopping an action when the music is off.

This distance learning course was a terrific resource during the first year after my daughter's hearing loss diagnosis. The variety of games either enhance language or help kids gain listening skills that will help them locate and identify sounds. Plus freeze dance is good family fun - you just have to be doing something weird when the music stops!

Sunday, December 20, 2009

(Mis)understanding Hearing Loss

Hearing loss has been difficult to explain to the people around my daughter. I rely heavily on my own past perceptions of the hard of hearing. Before I became educated and intimately acquainted with the workings of the ears I just didn't understand much about hearing.

Before Julia, the only hard of hearing person I knew was my grandfather. His hearing was destroyed during World War 2. He has hearing aids that he won't wear. Our communication with him consists of yelling at increasing volume and repetition.

Seeing hard of hearing older folks made me think that hearing was sort of "on" or "off". Grand pap used to hear, now he doesn't. Everything needs to be louder. When Julia was a baby, I knew that she could hear because she responded to some sounds. I had no idea of all of the things she wasn't hearing.

The first thing the audiologist showed us after the testing was conclusive was the "speech banana". This was a confusing bit of information at first. I remember feeling weepy when I saw that whispering and birds singing were so far out of her range. I studied the chart and tried to figure out where Julia's speech approximations came from and how we took so long to diagnose the hearing loss.
The banana shape encompasses all of the speech sounds. Different letters are marked on the chart. Normal hearing is represented by the dashed line at the top of the banana. Taking Julia's 55 dB loss as an example, all of the speech sounds are above that mark. Theoretically, without her hearing aids she can't hear any of those sounds.

Things louder than 55 dB like a dog barking or a piano would be accessible for her without hearing aids. But the tricky part is that it isn't so cut and dry. She wasn't missing all language and hearing dogs barking consistently. There are just too many variables to figure out what her world was like before the hearing aids.

At this point, the 55 dB loss is "corrected" by hearing aids. Aided, Julia is hearing at the dashed line above the banana. It's still not as good as normal hearing due to background noise and other interference that I will never understand. This is why her teachers will be compelled (by me) to give Julia preferential seating and establish eye contact when giving instructions. There will be additional effort to overcome the imperfections of the aids.

Educators still ask, "can she hear me?" They see the hearing aids and think she's hearing nothing. I can show them speech bananas and explain listening bubbles, but my biggest fear with moderate hearing loss is that the school will just ignore it. The hearing aids do get her to that dashed line after all. So my husband and I remain geared up for a long school career of advocating for our child so that her disability never has a chance to interfere with learning.

Sunday, December 6, 2009

Constant concern in an ear-centric household

During preschool on Thursday, I got a phone call. Julia's hearing aids were beeping. There was palpable anxiety in the voice of the go-between chosen to call mom for the teacher. I told her there are batteries in the classroom. I told her where the batteries are located in the classroom. I tried to calm her a little by explaining how to open the battery door. I gave them the option to call if they couldn't perform the operation and I would drive back to school and do it.

They never called back. They were able to figure it out. Julia gets in the car after school with the story already barrelling out at me. They changed my magic ear battery! Just the left one! I checked and graded them a "B" on putting the aid back in for her. No one gets all of the nooks and crannies lined up like mama does.

This is the first time we've had one go down when I wasn't around. She survived.

But a related issue has popped up since our last audiologist appointment. The result of that visit on the Monday before Thanksgiving was that Julia is having fluctuations of 5 to 10 dB at a few frequencies. Next time we have to make her wear the ear plugs she despises to try and get consistent readings. For the last three appointments, at Julia's request, she's been wearing headphones. The audiologist thinks this is messing us up. Thankfully, she believes the hearing is stable, but perhaps the headphones are shifting and impacting the results.

The audiologist took the hearing aids for a long time to check the programming. She returned them to us with "fresh" programming and explained that tweaking the programming each time can cause "compression ratios" and stuff to get messed up. She noted that we might hear a difference during our listening check.

I thought that I couldn't possibly notice a difference. I just confirm that they're on and don't sound crackly. But they sound wonderful. Clear and maybe louder and just plain better than before.

Since the "fresh" program we've had two sets of batteries die after only three days. Usually batteries last for at least two weeks. Occasionally we come across some wonder batteries that will last a month. Three days is not a good lifespan.

The FM will draw more power, but if that is the case we should have been seeing a problem since the start of school. We're left to wonder about the super-clear sound being some kind of hyper-power drainer. And my battery tester doesn't really work so what if Julia is false reporting low battery beeps?

All I think about is ears.

Then at bedtime Thursday night, her right ear was hurting. Ear pain about a week after a mild cold. Ugh! The next days found me with my head cocked, listening intently for the tell-tale slushy speech. Thankfully, the pain was a fluke or went away, but I'm still worrying over those ears.

Look for my article What Works at Home? Guiding Your Child's Speech Development in the Nov/Dec 2009 Volta Voices magazine (available with your AG Bell membership)!