Big ALDAcon Welcome

I didn’t think I could get much more excited about attending the ALDA conference—pardon me, the ALDAcon (love that name!)—but then yesterday I got a welcome e-mail from the President-Elect of the organization.  And I don’t mean a form e-mail that got sent to everyone, this is a personalized e-mail.

I had completely forgotten that when I filled out my registration form, they had me fill out a separate “newcomer” form.  It asked my age range, interests, hobbies, hearing loss, preferred communication method(s), etc.  So here is my e-mail from the ALDA president:

Dear Louise,

Less than one week to go before the convention...I can’t wait!

Thanks for filling out your registration form.  There is a newcomer from […] named […], who shares your interests in knitting and writing.

I’d like to know more about your interest in anthropology—I also find that fascinating.

I am sorry about your sudden onset tinnitus—that must be very disturbing, both literally and figuratively.  We can talk about it at the Con and I’ll see if I can find someone who knows more than I do to talk with you about it.

Events for you at ALDAcon include our Newcomer Workshop on Thursday at 8:30 am, the Newcomer/Chapter Leader Breakfast on Friday morning early—plan to get a good night’s sleep Thursday—and newcomers are included in a big way at the Farewell Brunch on Sunday.  We are so looking forward to seeing you! 

Cynthia Amerman

ALDA, Inc. President Elect

Newcomer Chair for ALDAcon 2010

I am seriously impressed by this!  Not just the e-mail, but the extent that ALDA is making us newcomers feel welcome and important.  (Brandt and I missed the Newcomer Orientation at the HLAA conference by about 10 minutes, so I can’t exactly compare the two.  The NAD conference didn’t have anything for newcomers, which I thought was strange until I got there and saw hundreds of Deaf people congregated in the hotel lobby—and realized that was the newcomer orientation.  If you’re Deaf, you probably just walk up and say ‘Hey, I’m new!’)

Now back to practicing my ASL!

  

ALDAcon 2010

I’m going to another conference, and it’s going to complete my trio of conferences for people with hearing loss!  Brandt and I attended the Hearing Loss Association of America conference last year, and the National Association of the Deaf conference last month; next week, I will be attending the Association of Late-Deafened Adults conference.

Each of these organizations has a different approach to hearing loss.  NAD members view themselves as a “linguistic minority” who belong to Deaf Culture, which relies primarily on American Sign Language for communication.  HLAA members aim to remain in the Hearing World as much as possible.  ALDA is the middle ground between the other two.  As the name suggests, it is aimed towards people who became deaf later in life, implying that they are culturally Hearing.  However, ALDA embraces many forms of communication, including ASL—the ’con even offers workshops on learning sign.  Here is their statement on communication (which I love!):

The Association of Late-Deafened Adults is about communication and acceptance of every deafened individual. Some people lip-read, some sign, some use hearing aids, some have cochlear implants, and some need to have others write down what they are saying—and at ALDA all the above is okay! ALDA’s official communication philosophy is “Whatever works!”

Members of ALDA call themselves “ALDAns,” the annual conference is the “ALDAcon,” and e-mails from members are signed “ALDA-best to you!”  It seems like an organization that strives to be easy-going and inclusive.  I honestly didn’t know much about it until last year, when I read about it for my certification as a Hearing Loss Support Specialist.  Then my Deaf friend Julia, who is a local ASL teacher, recently told me that she loved ALDAcon and suggested I check it out.

View of Pikes Peak
from Garden of the Gods

Unfortunately Brandt can’t go because of work (I know he said that about the Philadelphia trip and came anyway, but this time he’s serious), so I’ll be on my own.  My flight to Philly was my first time flying by myself; the flight to Colorado Springs will be my first time changing planes by myself.  But I’m determined not to worry about the transportation (Brandt was sweet enough to buy my plane ticket for our anniversary a few weeks ago, so I could afford the trip), and instead focus on how excited I am about attending!  I’ve never been to Colorado, so that’s really exciting, and there is going to be a group tour to the Garden of the Gods park, which has a gorgeous view of Pikes Peak.  Our tour bus is even going to have an ASL interpreter on it!  ALDA vowed to make this ’con the cheapest possible (it’s less than half my trip to Philadelphia!), as well as give enough time for sightseeing.

Since I knew that I would be way too shy to introduce myself to complete strangers once I got there, I asked one of the ALDAns in charge of the ’con if she could ‘introduce’ me to some fellow attendees over e-mail.  I have struck up an instant friendship with one lady (a Cochlear Implant wearer and fellow ASL student), and am about to e-mail another.  I’m a lot less nervous now that I have someone to meet up with—and practice my signing with!

The only other thing I’m worried about is the altitude.  Colorado Springs is about 6,000 feet above sea level (Pikes Peak is a whopping 14,115 feet tall, but I won’t be going to the summit), and I’ve never been at high altitudes for long.  The highest I’ve been is Clingman’s Dome, which is the highest point in the Great Smoky Mountains at 6,643 feet.  Brandt and I were only there for about an hour, and were gasping for breath.  My Colorado Springs visitor’s guide warns me to drink lots of water before and during my trip, so I’m going to make sure to stick to that.

Now I need to get back to studying my ASL.  ALDA-best to you!

  

ASL Withdrawal

It’s been 3 weeks since my ASL Level 3 class ended, and I am going through severe withdrawal!  And making it much worse—it doesn’t look like there will be a Level 4 (despite what my teacher told us the first night, she said I can advance straight on to Level 4!) or even a Level 3 that I could re-take this Fall.  I’m not giving up on the idea yet; after all, they didn’t think there would be a Level 3 last semester until about 2 hours before the first night’s class. 

But, I’m still having to think of contingency plans.  I don’t want to lose what I’ve already learned (“use it or lose it” definitely applies to signing!), and I want to keep improving on my skills.  I haven’t been using ASL with Brandt very much since class ended, and we haven’t been around our local Deaf Community in several months.  We really need to get back into the swing of things before I get too far behind on my signing.  I’ve been reading a few pages of my unabridged ASL dictionary every day, trying to learn new words, but I need to be using it with other people.

If there isn’t a Level 3 or 4 class this semester, I’m going to see if my Deaf friend Julia can teach me Level 4 in private lessons.  She teaches several types of ASL classes (community classes, workshops for teachers and daycares, and classes specifically for deaf/hard-of-hearing—which Brandt is going to take once he finishes his doctorate).  I’ve wanted to take classes her from since I met her last summer, but she lives an hour away and the traffic getting to her house from where we live is insane.  But she learned ASL from the same place that I’ve been attending, and she knows the Signing Naturally book well.  As much as we both dislike it, it’s THE book in the world of ASL teaching—Gallaudet University even uses it to judge the signing skills of incoming students by asking which chapter you’ve last completed.  We went through the first half for Level 3, and Level 4 goes through the second half—so I already bought it and want to finish it.

And if Julia isn’t available for private classes…well, I haven’t thought of a second contingency plan yet.  I really wish there was a local college or university that taught past Level 1, but alas, there isn’t. 

On a brighter note, I’m going to have an exciting opportunity to use ASL a lot very soon.  Stay tuned for my next post for the details!

  

’S Wrong! ’S Word!

I’ve written before about funny and confusing closed-captioning mistakes; they’re a never-ending source of entertainment and I keep a running list of my favorites.

I’m a big fan of Gilmore Girls.  Even though I’ve seen every episode several times, I still record it on DVR every day and play it in the background while I’m writing e-mails or reading a book.  Last night I was watching the episode “’S Wonderful, ’S Marvelous,” where Christopher takes Lorelei on a romantic date to watch the musical Funny Face.  I was typing an e-mail but looked up to watch the captioning as the final scene of the movie was playing, since I often have trouble understanding song lyrics and accents.  Fred Astaire and Audrey Hepburn were dressed in their white wedding attire, singing their love for each other: 

“You can’t blame me for feeling avarice/

Oh! ’S wonderful! ’S marvelous!/
That you should care for me!”

Wait…what?  “AVARICE”?!  Let’s check Merriam-Webster, shall we?

av·a·rice:  excessive or insatiable desire for wealth or gain

Umm… Maybe we should check the actual lyrics of this beloved Gershwin song:

“You’ve made my life so glamorous/

You can't blame me for feeling amorous…”

am·o·rous:  strongly moved by love; enamored

There, that’s better!

  

1 in 5 Teens has Hearing Loss

In 1994, roughly 1 in 20 American adolescents had some degree of hearing loss.  By 2006, the prevalence jumped to 1 in 5—about 6.5 million children aged 12 to 19, according to a new study published by the Journal of the American Medical Association.  One of the authors, Dr. Roland Eavey, says,

“What we're seeing is a big jump in the prevalence of hearing loss in a very short period of time, in less than one generation.  That means we're on the front edge of an epidemic.”

The main culprit (probably not too surprisingly) is suspected to be exposure to loud noises, especially music.  Tommie Robinson, president of the American Speech-Language Hearing Association, says,

“I believe this is rooted in a cultural paradigm shift in terms of how electronics have become ‘the thing.’  Everyone has something in their ears.”

Recent reports have determined that “not only do teenagers play music at louder volumes, but they are completely unaware they are doing so.” 

Dr. Eavy suggests that when giving a child or teenager an iPod (or other MP3 device), to set the maximum volume limit at a lower level.  Apple has detailed instructions on setting the volume limit on its website, as well as a page on “Sound and Hearing.”  Other informative websites are “How Loud is Too Loud?” and “It’s a Noisy Planet,” both by the National Institute on Deafness and Other Communication Disorders,  and “Listen to Your Buds” by ASHA.

The “Listen to Your Buds” website has a number of recommendations for reducing childhood noise exposure, including wearing hearing protectors.  I personally swear by foam earplugs, which block out the sounds of trains and neighborhood dogs when I’m trying to sleep.  And while I love loud bass and spent my teenage years blaring music as loud as it would go, it undoubtedly contributed to the minor-to-mild hearing loss (15 to 25 decibel loss) that I now suffer.  I’ve decided that from now on, I’m going to take a pair of earplugs with me to concerts, wedding receptions, and other loud venues.  Earplugs now come in a variety of colors and styles—even specifically for musicians and concert-goers—and I hope they can become popular among teenagers who don’t want to lose their hearing before the age of 20!

  

Another Birthday?

One of the last times the whooshing tinnitus in my right ear started up, it was right after eating at our favorite Mexican restaurant.  So after the whooshing completely went away again over the weekend, I wanted to test my theory that it was being caused by food (cheese dip and chicken fajitas—yum!).

The biggest drawback to this restaurant—and most restaurants, for that matter—is the noise.  There is always music playing in the overhead speakers, and sports playing on the flat-screen televisions.  We always bring the FM system, which helps cut out the background noise and amplify my voice, but it’s never a perfect setup. 

Someone was celebrating their birthday, which means the entire restaurant staff came out singing and clapping.  Brandt jumped and asked, “What on earth is that?!”  “Birthday,” I explained.  When we were done eating, we still had a lot of food left over and asked for some to-go boxes.  Our waiter dropped off the boxes and ran off, and I said, “I think we need to ask him for a bag.”  Brandt shrugged and said, “I don’t know, I guess you’d know better than I would.”  I’ve gotten pretty good at being able to tell when he’s mis-heard me, and I knew this was one of those times.  I furrowed my eyebrows, signaling that we were having a misunderstanding.  “Ok, what did you really say?” he asked.  “What did you hear?” I asked.  “There’s another birthday in the restaurant?  People are singing again?”  I shook my head and said, “No…I said I think we need a bag from the waiter, to carry all these boxes.”  He thought for a moment and said, “That wasn’t even close, was it?  And just how did I score a 90% on that sentence test?!”

As our waiter was clearing the plates off the table, I picked the FM transmitter up off the table and reattached it on my neckloop.  The waiter looked at it quizzically and asked me, “What’s that thing for?”  I explained that it was a microphone for Brandt’s hearing aids, and pointed at his ears.  “So, he can’t hear anything without that thing?” he asked.  “Well, a little…” I tried to explain.  We both looked at Brandt, who motioned towards his ears, shrugged, and shook his head.  “We’re talking about you!” I told Brandt. 

I’m always glad when people ask about the FM system.  I much prefer them getting educated about it, instead of just staring and whispering.  I also think it helps to dispel the myth that only ‘old people’ wear hearing aids!

And my whooshing tinnitus is still completely gone, so, I’m back to square one trying to figure out the cause…

  

“WHOOOOOOSH!”

It’s baaaack.  I’ve had problems with tinnitus off and on for the past year (though not nearly as bad as Brandt’s constant static).  Last summer I had a high-pitched tone in my left ear, that sounded like an old television set dying.  After several weeks of sleepless nights and a hearing test, I finally figured out that it was caused by the increased dosage of my blood-sugar medication.  I switched to an extended-release version of the medication and the tinnitus went away, other than an occasional tone that lasts a few seconds and goes away.  It was a huge relief to get rid of it, because it was driving me absolutely crazy.

Then when I was about to attend the National Association of the Deaf conference in Philadelphia last month, I woke up to a loud whooshing sound in my right ear.  It sounded like a tornado roaring inside my head, something I had never experienced before.  I could actually feel the whooshing.  I don’t have health insurance, and this happened on the Saturday of Fourth of July weekend.  I assumed that it was an ear infection, and since I was about to fly, I knew I’d have to get on antibiotics immediately.  So Brandt drove me to an emergency medical clinic, almost an hour away.  I spent $100 to find out that my eardrum was “clean and beautiful” and it wasn’t an infection.  The doctor didn’t have any advice other than to use Afrin nasal spray before flying (I already use it every time I fly).

Fortunately, the whooshing went away two days later, right before my trip.  I wrote it off as a fluke and forgot about it, until it came back a few weeks later.  This time it lasted four days, then went away again.  And it’s been coming and going since, lasting two to four days and then suddenly disappearing in my sleep.  The fifth round started two days ago.  It’s not anywhere near as annoying as the high-pitched tone that was in my left ear, but it’s still really annoying, especially when I’m trying to fall asleep.

I have no idea what could be causing this.  I take the same medication every day, so I don’t see how that could be the cause.  It starts and stops quickly—I wake up with it, then a few nights later it disappears while I’m sleeping.  I’ve wondered if maybe it is being brought on by barometric pressure, or maybe high blood pressure caused by eating a salty dinner.  I’m thinking about keeping a food journal, to see if there is a food or ingredient that is triggering it.

Whatever the cause, I’m ready for it to go away.  “WHOOOOOOSH!”

  

Welcome to the 21st Century!

After the disastrous June hearing of the Twenty-first Century Communications and Video Accessibility Act of 2009 (H.R. 3101), I wasn’t sure if this act was ever going to get passed.  But, much to my excitement and surprise, the House and Senate versions have both been passed—just in time to coincide with the 20th anniversary of the Americans With Disabilities Act!

Senator Mark Pryor from Arkansas submitted an amendment to improve the Senate version, S. 3304, last week and it passed on August 5 (H.R. 3101 was passed on July 26).  Senator Pryor said,

“The Internet and other emerging communication equipment are no longer a luxury. They are an essential gateway to learn, interact and conduct business.  This legislation will ensure all Americans, including those with disabilities, are able to fully participate in today’s online world.”

Senator John Kerry added,

“In the digital age, an inclusive America demands that no person with a disability is left behind either online or offline.  The goal of our bill is crystal clear.  We must ensure that Americans with disabilities have every opportunity to access our shared communications infrastructure.  Anything less than our best effort dishonors the Americans with Disabilities Act and all that’s been accomplished over the twenty years since its passage.”

This act will require the internet and communications technologies to be more accessible to deaf and blind people, as well as people with other disabilities.  Among its many requirement, the act will:

• Require captioned television programs to be captioned when delivered over the Internet.
• Authorize the FCC to require 7 hours per week of video description on the top 4 network - channels and top 5 cable channels nationwide.
• Allocate up to $10 million per year for equipment used by individuals who are deaf-blind.
• Require televised emergency information to be accessible to individuals who are blind or have low vision.
• Require accessible advanced communications equipment and services, such as text messaging and e-mail.
• Require access to Internet services that are built-in to mobile telephone devices, like smart phones, if achievable.
• Require devices of any size to be capable of displaying closed captioning, delivering available video description, and making emergency information accessible.
• Require accessible user controls for televisions and set-top boxes, and easy access to closed captioning and video description.

I am not 100% sure, but I think the act will require Netflix to caption its Instant View movies and television shows.  I certainly hope so, because as far as I know they haven’t added any more captioning other than the first 4 seasons of Lost, and I’m really tired of having to pay full price for a service that isn’t fully accessible to us.

On the National Association of the Deaf’s page announcing the passage of S. 3304, Deaf actress Marlee Matlin wrote,

“We may be Deaf but we made NOISE.  A lot of it.  Now the ramp to the information highway is green for us and we can drive as fast as we want to!  Let's continue to fight for ‘caption action.’”

As an added bonus, the NAD also announced that the Department of Justice is calling for public comments on proposed amendments to the Americans with Disabilities Act.  They are seeking feedback on accessibility in the areas of:  websites, movie theaters, 9-1-1 services, and equipment and furniture.

   

‘Explanation’ of CI Evaluation

As a follow-up to his disappointing Cochlear Implant evaluation last Friday, Brandt sent an e-mail to Marie, his audiologist at Dr. Awesome’s clinic.  She is the audiologist who fitted his hearing aids and who we go to every time there’s a problem with the aids, iCom, or FM system.  Marie did not think that Brandt was a CI candidate, and has recommended since we met her last summer that he wait until his hearing loss has declined further before getting the evaluation.  Even though she didn’t agree with Dr. Awesome’s decision to send Brandt for the evaluation, she was still hopeful for our sakes that we would have a more positive outcome than we did, and wanted a full report afterwards.

Since we were upset and confused from the results, Marie contacted Tiffany, the audiologist who conducted the evaluation at the separate CI clinic.  Her e-mail back to Brandt attempted to explain why he was deemed to not be a Cochlear Implant candidate:

“The reason [Tiffany] stated to me that they did the HINT [Hearing in Noise Test] in quiet only is because you did so well.  The FDA requirement to qualify for cochlear implant is that the ear to be implanted must score lower than 50% and the non-implanted ear must score lower than 60% on sentence testing. In your case, the test was done initially bilaterally (both ears).  If your scores had been lower, then [they] would have then done the exam in the individual ears to determine candidacy.  However, since you scored so well, you are not a candidate based on FDA requirements.  They could have done other testing, but you would not have been a candidate based on these scores and therefore they felt it unnecessary.”

So if I understand this correctly, Tiffany did not perform the actual test that is used to determine candidacy, but assumed that based on his high binaural score, that he would do too well when his individual ears were tested.  I can understand that this is probably the case, but I still want to know what his individual scores are and think he should have the further testing done.

Brandt asked Marie why there would be such a discrepancy between his very low Speech Discrimination score (24%) and his very high HINT in Quiet score (90%).  She explained:

1. “The testing we did here was done at a level much higher than threshold to overcome part of the hearing loss.
2. The testing we did was UNAIDED—NO Hearing Aids.
3. The testing we did was WORDS in quiet.
4. The testing done [by Tiffany] was actually a completely different kind of test…
5. The testing done [by Tiffany] was done at conversational level AIDED—WITH Hearing Aids.
6. The testing done [by Tiffany] was done BILATERALLY—Both ears at the same time.
7. The testing done [by Tiffany] was a sentence test—not single words.”

Which means:

“Based on these differences, I would fully expect that you would do better on the sentence testing because there is more context to be gained from a sentence than from single words.  In that situation, even if you misunderstood part of the words, the context of the sentence let you fill in part of the blanks.  In a single word condition, the word could be any word out of thousands.  The single word test was done UNAIDED which means we were presenting at an extremely loud level which helps to overcome some of the hearing loss.  The loud presentation level gives us a chance to see how your system functions when things are presented at a loud level (basically, how do you do with more volume).  However, sometimes the loudness actually distorts some parts of speech, so it is not a perfect test (name one that is :-) ).  Also the testing we did was in individual ears and did not give the binaural boost that the brain actually applies when you are hearing with two ears.  Basically, that means that your processing system actually gives a natural boost when you are hearing information from both sides.  Because of these circumstances (sentences vs. single word, both ears vs. single ear, loudness presentation levels, etc.) comparing the score on the HINT to the score on the single word test is like comparing apples to oranges.”

Also remember from the CI evaluation that Tiffany ran a computer test on Brandt’s hearing aids and determined that they “are not programmed correctly,” and offered to “fix them.”  Marie’s response to this was: 

“As far as the hearing aid programming is concerned, yours are fit appropriately for your specific hearing loss and environmental needs.  Unfortunately, the testing done [by Tiffany] was simulated real ear measurements and not done on your ear.  They used normative values for a 2 cc coupler ear canal volume whereas we used your actual ear canal volume to determine appropriate fit (in other words, not everyone’s ears are the same and we took in to consideration your actual size and shape of your ear canal to program the hearing aids, not a simulated, generic coupler).   Also, they are looking only at loudness for “vowel sounds” being low frequency and were not taking into consideration how your system functions in your specific listening environments with background noise present.  I fully stand behind the way your hearing aids are programmed and I would not suggest changes based on their input.  I actually am very impressed by your sentence scores and feel it verifies that your hearing aids are fit appropriately and that you are functioning at the best possible level for your abilities.”

Brandt’s upcoming semester—both teaching and trying to finish his doctorate—is going to be extremely busy, so we don’t know when exactly he’ll be able to go back for further testing.  Another audiologist at the CI Clinic, Bobbie, has already looked at Brandt’s chart and agreed to meet with him for more testing.

Stay tuned…

  

Fear and Loathing of Microphones

What’s the deal with all the hatred and avoidance of microphones lately? (said in my best Jerry Seinfeld impression)

I briefly touched on this while at the National Association of the Deaf conference last month, but it was even more widespread than I initially reported.  While most of the ASL interpreters automatically used the microphones, I had to ask several of them to do so, and four of them flat-out refused to use them.  REFUSED.  I told them, “My husband is deaf, I have trouble understanding clearly, and we’re not fluent in ASL, so we need you to use the microphone sitting right over there on that table.”    And they actually refused to use them.  One interpreter even joked about it, saying, “You better sit close to me, then, because I’m not using that mic and I don’t plan on projecting very loud, either.”  We sat as close as we could, two rows behind, and of course it wasn’t close enough to hear them easily.  During a pause in the presentation, the ’terp turned sideways towards me and asked, “Can you hear me ok?” and I hissed back, “No, not really!”

We had another microphone problem when the wedding we attended in May was not accessible to Brandt.  It was an outdoor wedding and the pastor started off using the provided microphone, then quickly declared “I’m loud enough without it” because it was getting in his way, and turned it off.  Poor Brandt couldn’t understand a single word, and I struggled to understand everything myself.

I had forgotten about the issue, but then 2 weekends ago my mom went to a “Teaching with Technology” conference and encountered a similar situation (ah, the irony!).  The first man who got up to speak bragged, “I don’t need this microphone, I’m loud enough without it!”  This was in a large ballroom, with hundreds of people sitting in the audience.  Of course he wasn’t loud enough!  Where are people getting this idea?!  My mom sat there quietly annoyed, trying hard to understand his talk (she has normal hearing).  But when a soft-spoken, tiny little woman got up to speak—the microphone had completely disappeared at this point—she’d had enough.  She snuck to the back of the room and told one of the A/V guys, “You have got to get that woman a microphone!  There’s no way the audience can hear her!”  They quickly got her one, and after asking, startled, “Oh did I need one?” she asked the audience if they could hear her any better.  A collective sigh spread throughout the room.

That same weekend, Brandt was in Washington, D.C. for a different teaching conference.  With 100 people in the room, sitting at long tables, there wasn’t one single microphone.  So he had an incredibly hard time hearing what was going on, naturally, but it was too late to say anything.

Let this be a lesson!  You can never assume that there will be microphones available; and even if they are available, you can’t be sure that they will actually be used.  It’s important to let the people in charge know that everyone who speaks has to use a microphone, even if they think they’re “loud enough without it.”

So why do so many people hate using microphones?  Is it because it makes them self-conscious?  Do people hate how their voices sound on a mic?  Are they afraid of the screeching feedback that makes everyone cover their ears in pain? (ok that one I can understand, but still—get over it!)  Risking a few seconds of uncomfortable feedback isn’t near as bad as wasting your breath because no one can understand you.

  

Cochlear Implant Evaluation, PART 1

On Friday, Brandt had his much-anticipated Cochlear Implant evaluation; or at least, “Part 1.”  We drove the 2 hours in, and first stopped at Dr. Awesome’s clinic to pick up the new new iCom.  Phonak gave him a brand-new one, with new medical-grade silicone neckloop and updated software, even though they had completely rebuilt his old one a few weeks ago.  Brandt tested it with his iPhone (listening to an NPR podcast and music), the FM system, and talking on the telephone.  It worked fine, so we were off to get the CI evaluation in another part of the hospital campus (it’s a completely different office—don’t ask why, it’s way too confusing).

The office is geared towards children, so the waiting room was full of toys, kids’ books, and Hannah Montana playing (closed-captioned!) on the big-screen televisions.  There were 4 toddlers waiting with their parents; Brandt was the only adult patient.  We were summoned by Tiffany, an audiologist, and Marsha, a speech-language pathologist, and sat down at a small round table. 

Tiffany explained that the Cochlear Implant evaluation would probably take two or three visits, and “we might only have time to talk today.”  Brandt and I glanced at each other.  We want to get to the good news in as few trips as possible.  Tiffany asked Brandt a number of questions:

• Tell me about your hearing loss.
• Tell me about your current hearing aids and FM system.
• You have some very high-tech technology; do you use your FM system in the classroom while teaching? (No.)
• Is there anything else about your hearing loss that I need to know? (I mentioned his ever-worsening tinnitus.)
• Do you have a family history of hearing loss? (Yep.)
• Tell me what you already know about Cochlear Implants (I started laughing at this one; it would have taken a good 2 hours to fully answer!)
• Do you have any burning questions about Cochlear Implants, the surgery, etc.? (We had a 2-page list of questions, most of them assuming that he was getting implanted; so we decided to hold off on most of them.)

Tiffany then told us that adults are not given a choice of Cochlear Implant company and must receive an Advanced Bionics implant, and wanted to make sure that was ok.  I said, “Well then it’s a good thing we’ve already decided on AB!”  She explained that after the surgery, Brandt won’t be allowed to use a hearing aid in his non-implanted ear for a month, so that his brain is forced to learn how to hear with the CI.  Marsha explained that “the best person to learn to use a Cochlear Implant has had normal hearing,” and predicted that Brandt would have a “very fast learning curve” and “adapt quickly” to the CI because he had had “normal brain development” in regards to hearing and learning language.

Tiffany pointed out that Brandt has more residual hearing “than normal,” but they have implanted people with even more hearing than he has.  She asked about his work schedule, and he explained that he would have to be implanted at the beginning of the summer term and would set up his schedule so that he wouldn’t have to teach any classes.  Tiffany and Marsha both seemed very happy with this answer. 

Then Tiffany asked if Brandt would like to do a few hearing tests, or if he was ready to leave (we’d been talking for about half an hour).  He said, “Let’s do as much as we can today!”  They let me sit in the sound booth with him; there were lots of blocks, Legos, plastic fruit, stuffed animals, and stickers strewn around the booth.  First Tiffany did a tympanogram, which tests the middle ear and flexibility of the eardrum.  Then she did pure tone audiometric tests; these are the tests that are done when you get a ‘basic’ hearing test.  First the test is done through “air,” where Brandt wore earphones and raised his hand when he heard beeps at different pitches.  Then the test is done with a bone conduction oscillator (pictured above left) placed behind the ear.  Brandt’s speech discrimination was tested, where he repeats back a list of two-syllable words (they used the same 4 words over and over, which made it pretty predictable).  He scored a 35%, which is 11 points better than he has scored on the last 2 tests he’s had done since last spring.  I’m convinced this was because she consistently used the same 4 words.

After the ‘basic’ hearing test, we sat back down at the round table and Tiffany said, “Well, it’s 2:15, you’ve been here an hour.  I’m sure you’re ready to get back home now.”  We both furrowed our eyebrows and said, in unison, “Um, no, we want to keep going.”  She acted surprised and said, “Oh…ok…well, then let me take your hearing aids for a minute, I want to check them” and left the room.

Marsha sat down next to me with a stack of papers in her hand, and started asking me about insurance and finances.  Had we contacted the insurance company?  Did we know if they would pay for the CI surgery?  I was pretty confused, because we thought they were supposed to find out about all that.  Poor Brandt was sitting there, Earless, without a clue as to what we were talking about.  Marsha asked him, “Did you get all that?”  He said, of course, 

“I have no idea what you’re saying.  She took my hearing aids, I can’t hear you at all.” 

Marsha answered, “Oh, well that’s good to know!”  So she just talked to me, and had me write everything down so I could explain it to Brandt later.  Legally speaking, this really isn’t allowed.  I’m not Brandt’s legal guardian or parent, I don’t make his financial decisions for him.  (I don’t even have health insurance!)  Marsha talked to me for a full half hour, saying that she’s not a financial advisor and really didn’t understand all this, because it’s so confusing.  Their office submits the bills for some things, while Dr. Awesome’s office bills for others.  She gave me the e-mail address of the hospital’s financial advisor, and had me promise to e-mail him as soon as we got home.  Brandt continued to stare blankly at us, getting a little madder with each passing minute.  I tried to stay calm, thinking it must be a really good sign that he would be approved, since Marsha was talking like he was definitely getting the implant (saying “when” instead of “if,” etc.).

Tiffany finally came back and gave poor Brandt his Ears back.  She said, “Ok, it’s 15 ’til 3:00, you must be ready to start heading home.”  Again, we said, “NO, we want to keep going.”  She asked if he wanted to start on the aided hearing tests—meaning, testing done with his hearing aids on.  He hadn’t had this done before, so I was anxious to see the results.  There was a certain spot that he had to sit in the booth, a few feet away from a speaker.  First they played static at different frequencies and volumes, and Brandt raised his hand when he heard them.  It was hard for me to not react to them, but luckily he kept his eyes closed.  Then they played a tape of a man reciting sentences, and Brandt was to repeat back as much as he could understand, getting “one point” for each correct word.  I was shocked at how well he did.  There were several times that I thought, “Oh he won’t get one word of that sentence” and then he got the entire thing 100% correct.  He would shake his head, grimace, and tentatively repeat back each word slowly, ending with, “But that can’t be right.”  But it was right.  I was staring at him like, “Who is this person and what have you done with my deaf husband?!”

When the test was over, Brandt looked at me sheepishly and said, “Tell me later just how bad I did.”  Distraught, I said, “You didn’t do nearly bad ENOUGH!”  Tiffany opened the door to the booth and said, “Ok, let’s go back to my office and chat.”  “Chat”?!  I knew this wasn’t going to go the way I’d been hoping.  Brandt asked her, “So are you going to do the Hearing In Noise Test next?”  She said, “That was the Hearing in Noise Test.”  “No,” I said, “the test with the background noise.  The HINT test.”  “But that was the HINT test,” she said.  I shook my head emphatically.  She answered, “It’s the Hearing In Noise In Quiet Test.”  Brandt and I looked at each other, both quite confused.

We all sat down at the table and Tiffany said, “Ok, you did a little too well on that test…WAY too well, actually.”  My heart sank and my lower lip started trembling.  I could feel the tears pooling in my eyes.  She said, “You needed to score 60% or worse in ‘the best-aided condition,’ which is what we just did.  You scored 90%.  I even dropped the volume lower there at the end, and you still scored an 85%.  So, you are not a Cochlear Implant candidate.  Not even close.”

The room started spinning.  Brandt again asked Tiffany about the Hearing In Noise Test, and she again said that was the HINT test, done in quiet.  We were both still very confused.  She and Tracy both tried to ‘explain’ that “listening with a Cochlear Implant doesn’t guarantee better understanding in noise, only in quiet,” and that his hearing test showed that he was “still outside the range for a CI.”  Tiffany added, “You’re getting pretty good aided benefit,” and I snorted.  I don’t know how he did that well in the booth, but even sitting at the kitchen table, with no background noises, he never functions at 90%.  But I was too shocked and upset to argue.  Marsha said that Brandt was making the most mistakes with vowel sounds, which is unusual.  “For most Cochlear Implant candidates, they have trouble with consonants—like they can’t distinguish between ‘s’ and ‘sh,’ or ‘m’ and ‘n.’  But that’s not your problem.” 

Tiffany hypothesized that his “vowel confusion” was caused by a lack of “low-pitch information” given by his hearing aids, and said that when she ran them through a computer program, it said they weren’t programmed correctly.  She offered to take them and “program them correctly” on her computer.  I shook my head.  It’s taken a full year to get those hearing aids programmed as good as they were, and I didn’t care what her computer said.  It was almost 4:00 on Friday afternoon, and she wanted to start changing the settings on his hearing aids, even though we were far away from Dr. Awesome’s clinic where his preferred settings were stored.  No.  No way.  Get us out of here.  Brandt politely declined, and Tiffany and Marsha started talking about how he could use his FM system in more ways and in different situations.  Tiffany showed him how to place the FM system in the middle of the table and “you can hear everyone sitting around it!”  I scoffed.  “It doesn’t work like that,” I whispered.  Brandt spent a few minutes explaining how the FM system doesn’t really work as well for him as the brochure implies, and she didn’t really have an answer for him.

They asked if we had any more questions, and I shook my head again, just wanting to get out of there as quickly as possible.  Tiffany added, “We could always test your ears individually, and Marsha could do some language tests with you, but I’m positive the results would be comparable.”  We decided to leave.

It took a while before I could even talk, much less process what had gone on.  If his CI candidacy all came down to that one ironically-named test (Hearing In Noise In Quiet?!), why hadn’t they done that first?  Or at least sooner?  And they hadn’t even wanted to do it that day, they wanted us to come back—to take off a day of work and drive another 4+ hours round-trip, only to find out that he wasn’t a candidate.  I was fuming.  Brandt was confused and “surprised.”  On the drive home yesterday, we discussed our plan for moving ahead. 

Since it was apparent from meeting Tiffany and Marsha that they’re used to working with children, we will request an evaluation with members of the team who work more with adults.  Brandt will ask to have the testing done on his ears individually, and have the language testing done with a speech-language pathologist.  We will discuss with these team members how Dr. Awesome had implied that Brandt’s candidacy wouldn’t hinge on the result of one single test, but would take into account a number of factors and would be decided by the CI Team as a team.  We will make sure they understand that we want all of this to take place at the same visit, even if it’s 3:00 on a Friday afternoon and they’d rather go home early.  And we will contact Dr. Awesome directly and get his opinion.

So, it’s not over yet…