Saturday, July 16, 2011

Playing chess with the audiologist

After the Berkeley Low Vision Clinic appointment, we spent several days with the Denizons of Chaos (I'll write more about that next time), then drove to Palo Alto for an audiology appointment. Queen Teen was resigned to it, and happily distracted by three energetic girls, one loud boy and a giant house to explore. Once we reached our hotel room in Mountain View, her mood quickly changed. The sparkle in her eyes vanished, replaced by a nervous scowl. The hotel was nice (thank you and we had cable TV, something we don't get at home, but nothing could negate the misery she felt thinking about the next day: audiology.

Of all the appointments she has, from neurology to dentistry to genetics to orthopedics, audiology is the worst. She likes the doctor fine, but the tedium of the tests and the reality that she does indeed need hearing aids ("No I don't," she insists, even after the hearing exam clearly shows she can't hear a blessed thing.) depresses her more than her best friend moving away.

She did her best during the test, and I told her how proud I was of her. Dutifully she put the block in the box when she heard the tone, but she also put a block in after guessing the interval between testing tones. The doctor mixed up the timing to avoid that, so it was obvious Queen Teen barely heard anything. And during the vocabulary test she got frustrated when she couldn't identify what any of the words were. I made sure she could see the pictures, and she identified them by looking, but when asked to point to the "baseball" or "ice cream", she just looked at me and said, "I can't find it."

Queen Teen is a candidate for Cochlear Implants, but there's a lot to think about before we go that route, primarily, Queen Teen's mental health. She refuses to wear hearing aids and denies that she can't hear. She cries at appointments and has a panic attack before we leave the car. If I can't get her to a dentist to have her teeth cleaned without her freaking out, how the hell will she tolerate major surgery and implants? We're concerned that she's losing language processing ability because that part of her brain is no longer being activated; hearing aids can help with that.

Before we left, the doctor took an impression of Queen Teen's ears for new ear molds to go with her new hearing aids. That's when Queen Teen started to cry, and she even tried to hit the doctor. I soothed her the best I could, then the doctor quickly made the impressions and we were out of there. We had planned to stop and visit another friend, but we were both worn out so we decided to get a head start before rush hour traffic began. That's the only plus to Queen Teen's hearing decreasing so much: the hearing tests take a lot less time.


EmmaVerdona124 said...

that's great if she gets new hearing aids :) *I'm doing so well with my new ones too*
I wish her luck on the CI journey though

Terena said...

I'd love to hear your thoughts about her reluctance to wear aids, or even acknowledge she has trouble hearing. What do you think is going on? And how can I help her?

EmmaVerdona124 said...

I think she might not be used to wearing them since she has so much trouble hearing
have you tried an FM unit for her? I have the Phonak Inspiro FM and it's great.

oh boy...... there might be problem with the ones she's wearing right now but I'm not talking wax in there, dirty earmolds! I'm talking techincal diffcultes like the volume's not loud enough (same problem with my old ones) but right now I'm producing 45 decibels a day with my new ones
as soon my audio report was in the mail, I discovered that it said that I had a severe loss.

PinkLAM said...

I'm sorry to hear the audiology visits are so tough on Teen Queen. It sounds like it's difficult/upsetting for all involved. I think a CI would make a huge difference in QT's life. Not being able to hear and communicate (especially when it's something you could once do relatively easily) is frustrating, and a CI could open up a whole new world. However, I don't think Queen Teen will benefit from it unless/until she comes to the decision to undergo the surgery in order to hear better. Otherwise I can see it easily turning into a battle just to get her to wear the CI, which certainly won't be beneficial.

Talking to a Psychiatrist might be helpful. To me, it doesn't sound like she's *trying* to be uncooperative, but that she has some serious anxiety associated with hearing/audiologists. I hope you don't take this the wrong way- a visit with a psychiatrist is one of the required steps in CI candidacy for many surgeons (mine included), and I think it could benefit her greatly.

Terena said...

thank you both for your feedback. She is really struggling with anxiety, so we're in the process of starting therapy for her. I agree, forcing a surgery on her is counter productive. She needs to decide on her own that it will help. And I need to be okay with the idea that she may never want CI. I hope she does when she's older because I think it will help her tremendously, but we'll muddle through either way.

Leslie said...

my nephew went suddenly and severely deaf in his early twenties ( possibly due to a virus, the docs aren't sure why. ) he retains a small amount of hearing in one ear, but basically has become very adept at reading lips and coping. the docs have told him that his hearing will deteriorate further, and have discussed CI with him, but at this point he refuses to wear any kind of hearing aid and doesn't want to think about CI.

I realize this is not the same as the multiple issues you navigate every day with your daughter, but still, i related to your post and to the difficult choice that these young people must make to improve their hearing...

hoping you and your daughter find the way that is best for her.