Sharing Your Experience

Tonight, I met a friend of mine for dinner. As I was waiting for her to show up,I enjoyed people-watching and looking around at the various customers in the restaurant. I noticed a middle-aged man, directly in my line of vision, with two hearing aids eating dinner with his wife/girlfriend/lady friend. I spent the next few minutes watching their interaction, noticing the man to be clearly frustrated. He may have also been upset about something else, but was constantly having to ask his dinner guest to repeat herself. When the waiter came to their table, he asked "What?" three or four times, and he was clearly annoyed.

I wanted so badly to go over there and shout "I know how you feel!" and share the possibilities of cochlear implants, but decided against it because:

1. I didn't feel it was my place to say
2. It seemed rude to barge in on his dinner
3. He didn't appear to be in a particularly happy mood
4. I didn't know about his personal views or situation. What if he already knew he didn't qualify, for whatever reason? What if he is against the idea of CI's in general? I didn't want to be one of those people pushing my beliefs onto someone else, I despite it when others do that to me!
5. My friend showed up.

While I am more than happy to share my experiences with people when asked, I guess I feel uncomfortable going up to other people unprompted. I'm sure there are people who would feel rude asking and wish a person they notice with a CI would just go up to them...




What do you think? Do you shout the praises of cochlear implants, or just quietly enjoy them? Have you ever shared your experiences with cochlear implants and offended someone else? (Or helped them?)

Side note: I was able to hear quite well in the restaurant, and don't think I had to ask for any repeats! While I'm the first to admit that CI's are far from perfect, I'm always amazed when I think back to the constant "What?" from my days of hearing aids and compare to how well I am able to hear now.

Using the FM with the N5: Revisited

I've been meaning to post an update about this for a while, especially since I've noticed a lot of people have found my blog when they were searching for information about using the Nucleus 5 with the FM adapter. Well, when I posted before, I had no personal experience using it since I had used the MyLink neck loop which, despite its ugliness/cumbersomeness, worked pretty well with only occasional computer interference. Since Cochlear was sending free adapters, we went ahead and ordered two and the school district provided the boots to go with them. I must say I had high expectations, and was hoping that any interference issues would be alleviated since the T-coil was no longer in use.

Not to be Miss Debby Downer here, but I had a horrible experience! I couldn't get through more than a half day with them.. The interference was so awful that I would only occasionally get reception when my head was tilted a certain way and the teacher stood in a certain spot, and that was only in one ear! After dealing with non-stop static for three hours, I gave up and asked for the neck loop back. The school district audiologists didn't bother to troubleshoot and pretty much just said, "Oh well, we tried." It's completely possible that with some adjustments to the FM channels it would have worked fine, but I don't know since I didn't get the chance to try it out. I'm not saying you shouldn't try out the boots with Euro adaptors on the N5 (as long as you can try before you buy!), but if you have small children using them, please be sure they're not just hearing static all day! It was the most terribly unpleasant experience, and I would hate to think that there are some toddlers out there who aren't able to explain what they are hearing that are having to deal with it too!

School's Out...

(for 2 weeks)
Hallelujah!

Soo glad to be out (and even more excited that I only have 6 months until I am DONE with this school forever. My district divides the high schools up 9th-10th graders and another school for 11th-12th graders). I did well on all of my exams; even better than I expected. I'm leaving in a couple of days to fly up north (all by myself!) to visit a very dear convention friend. Super excited!

After kicking off the break with an ugly-Christmas-sweater/White-Elephant/gingerbread-house-decorating/Christmakuh party on Friday night, I went to the Dallas Hearing Foundation's Sounds of the Season Gala/fundraiser. This was the first year I have attended; I wasn't sure what to expect, but it was absolutely wonderful!

My older sister and I

 A while back they asked me for my cochlear implant story for the gala and had me get my picture taken. I wasn't quite sure how it was going to be used..

 Well, I had "my" own table! It was named after me, and each place setting had my picture with the story on the back. Pretty cool!

 My picture/story was also turned into a poster board that greeted all the people as they walked in.

Please excuse the fuzziness- this was taken from my sister's phone.

I really wish I had gotten pictures of my favorite part, which was the presentation by 5 kids who had been helped by DHF. All of of them had cochlear implants, enjoyed the benefits of speaking and hearing, and were absolutely adorable! I was too busy enjoying it to snap any pictures. By the end there wasn't a dry eye in the house. If I had brought any money with me, I would have dumped it all right into one of the donation envelopes right then ;)

There was Meghana, the junior emcee, who hosted the event along with her sister. She's in second grade, and was implanted when her family moved from India to Texas when she was four. She had a precious performer personality, and did a great job. Some of the other kids included:

• A little girl, whose entire family (including herself, her parents and brother) were born deaf and wear cochlear implants. She spoke beautifully about the miracles of Hanukkah and described the miracle of her cochlear implants.
• A 12 year old boy implanted when he was 5. He got up and sang a pretty awesome rendition of "Grandma Got Run Over by a Reindeer". He even got everyone to sing along!
• An eight year old bilaterally implanted when he was one. He wowed the crows with his breakdancing skills!
• A boy who has bilateral implants, as do all of his siblings. He thanked his mom, describing how she checks 6 processors and 18 (!!!) batteries every morning to ensure each of her kids can hear. He told of his struggle to learn to hear and speak for the first time when he was implanted, at age 8. It was clear he had worked hard and had made tremendous progress, and hearing him exclaim "Just look at me now!" brought on a flood of tears.

I had a great time, and I hope DHF was able to raise plenty of money. I also got to enjoy catching  up with old friends, some girls my age who also have bilateral implants.

Happy Holidays!

Dallas Hearing Foundation Fundraiser

Tickets are $25 off today and tomorrow only!

There's also a special deal on raffle tickets with lots of cool prizes. You can still win even if you're unable to attend.

Also be sure to check out the DHF Facebook page to read lots of great patients stories (and maybe even see some familiar faces!)

What I've been up to...

Since I rarely post pictures, and almost always post novels very long stories, , I thought I would switch things up a bit. Wondering what I've been doing?

World Series

Sea of red and blue

Funny sign

Home run..the only game the Rangers won :(

Driving

Sweet 16's

Homework. Lots and lots of homework.
 

 PS: Check out the latest contest over at CI Online for a chance to win a fancy medical bracelet! 

Contest!

Rachel over at Cochlear Implant Online is hosting a giveaway contest to win a cochlea-inspired spiral pendant. The jewelry is gorgeous and "hand-stamped" with inspirational messages. The deadline to enter to win is tomorrow night, so do it soon!  Information about how to enter can be found here.

I will post an update about me soon...Promise!

Search for teenage and adults deaf actors for upcoming TV show

No, this is not turning into a news blog :) I will post an update about myself soon, there just hasn't been much of anything to report. I saw this page on Facebook after a few of my friends "liked" it, and thought some reader might be interested. The plot sounds interesting, and it would be pretty cool if a "typical" speaking, hearing deaf kid was plucked from everyday life into TV fame. Note that they are looking for people who can both sign and speak, and the deadline is October 15th.

From the page:

** REMEMBER:  YOU MUST FILL OUT AND SUBMIT  A "WAIVER" FORM ALONG WITH YOUR VIDEO SUBMISSION. **

WHERE TO GET A COPY OF THE AUDITION SCENES AND WAIVER

You can find a copy of the waiver, together with the audition scenes here:

DAPHNE:  http://www.nowcasting.com/switched/daphne.pdf

** Note:  The character of Daphne will be speaking, signing (ASL) and using sim-com during the show.  The producers would like to see you do all three at some point during your audition.  So, pick some lines from the audition scene where you will speak only, others where you will sim-com and others where you will use ASL only. **

EMMETT:  http://www.nowcasting.com/switched/emmett.pdf

PENN:  http://www.nowcasting.com/switched/penn.pdf


WHAT YOU WILL NEED

You’ll need some sort of digital video recording device.  It can be your iPhone, cell phone, Flip camera, small digital video camera, etc, etc, etc.

BUT KEEP THIS IN MIND:
 -- The accepted formats for uploaded files are:  Quicktime (.mov), Flash (.flv) and MPEG4 (.mp4) ONLY!
 --  You may be able to "convert" your file into one of these formats.  But make sure you can and know how to do so, or find someone who does.
 --  YOUR FILE CANNOT BE OVER 20MB!
 --  Alternatively, you can supply us with a You Tube Video link, which must be set for public viewing.
 --  Do not name your video files with punctuations (for example: * " ' / \ @ &)


FILMING YOUR AUDITION VIDEO

It doesn’t have to be a “big production.”  But, we need to be able to see you – and hear you – clearly on screen.  So make sure you have plenty of light when you record yourself, and make sure the camera is not too far away from you.

Put your camera or phone on a stable surface, like a tripod or table.  Again, make sure there’s plenty of light so we can see you.  And then … perform like the character you want to play!

Remember, be easy and just be yourself.  You have nothing to lose!  Ultimately, what we want to see, is the true essence of who you are.

When you're done, you must do two things

1.  Fill out and return the "waiver form" you found attached to the audition pages.
-  You can fax it to:  323-874-2268
-  Scan and email it to:  switchedpilot@yahoo.com
-  Or include it with your "hard copy" DVD submission in the mail.


2.  Upload your video.  Here's how:


HOW TO UPLOAD YOUR VIDEO

Click on this link to go to the Now Casting website.  You will upload your videos there:

https://www.nowcasting.com/uploadauditions

- When asked for the role code, use  1133bf53
- Click "submit."
- Fill out the required fields and enter only the role you are auditioning for in the "Description" field.  Do not put /&"!'@ in the description or the name of the file.
- Click "choose file" [next to where it says "Audition File" -- underneath where it says "Description"] and pick the file you will be uploading from your computer.
- Click "submit."  The audition will be delivered directly to us.

That's it!  You're done!


SUBMITTING A HARD COPY THROUGH THE MAIL

Please note that the preferred method of sending us your audition videos is THROUGH THE LINK ABOVE.

If you submit your video this way, there is no postage to worry about, we are guaranteed to receive your video and we will see it much faster.

As a last resort, you can also submit a "hard copy" of your audition video, along with the waiver and personal information, IN DVD FORMAT ONLY to:

Deedee Bradley
6767 Forest Lawn Drive, Suite 100
Los Angeles, CA 90068

Actors should write a short paragraph about themselves and include:
1. Their name
2. Their AGE ( Very important)
3. Where they are currently living.
4. Best way for us to contact them.


DEADLINE FOR SUBMISSIONS

The deadline for submissions is October 15th, 2010.



Now, good luck!  We hope that you are who we’re looking for!"

Here is the plot outline for the show, Switched at Birth which will be on ABC Family and the roles they need to fill:
The show revolves around Daphne, a smart, confident and well-adjusted deaf teenager who has her world turned upside down when she discovers that she was switched at birth with another girl.

DAPHNE - ACTRESS MUST BE DEAF OR HARD OF HEARING AND MUST SPEAK WELL, AMERICAN SIGN LANGUAGE PREFERRED. Age range from 16 to early 20’s to play high school. Actress is to be light-haired or willing to dye hair blond for the role, and if the show moves to series, actress must be willing to relocate to Los Angeles in February.

Smart, confident, and well-adjusted Daphne is stunned to learn that she and Bay Kennish were accidentally switched at birth 15 years ago. Having grown up in a working-class household as the only child of a single mom, she is excited to meet her new parents, and especially thrilled at the idea of having brothers and a dad. But balancing two families is trickier than she expected, particularly because her biological parents have never been around anyone deaf, and are eager for her to enter a mainstream school and a less deaf-centric world.

EMMETT - 16, ACTOR MUST BE DEAF OR HARD OF HEARING, MUST BE FLUENT IN AMERICAN SIGN LANGUAGE. Emmett is Daphne's best friend. Raised by deaf parents and educated in a deaf school, Emmett doesn't talk orally, and is more comfortable in a deaf world. Rugged, reserved, a young deaf James Dean.

PENN - late 30’s or 40’s. male, ACTOR MUST BE DEAF OR HARD OF HEARING, MUST SPEAK WELL. Penn is Emmett's father and Daphne's mother's best friend. Penn is the one who educated Daphne's mother about the importance of learning sign, schooling Daphne in a deaf world, etc. 


I will admit it does sound a bit "stereotypical deaf", with the importance of sign, Deaf culture etc.. However, its still in its infancy and I highly encourage you to audition ASAP if you're interested! There's no telling how things will turn out!  Here is the Facebook Fan page that includes all of the information I have posted:
http://www.facebook.com/SwitchedSearch

Hearing Loss, Confidence, and my Second Week of School

Week 2 was also successful! The homework load has increased, and there has been an annoying amount of "busy-work" but it has certainly been bearable. It was pretty uneventful (except for a bunch of other sophomores unofficially declared on Tuesday "Scrub Day" which I find to be terrifying and cruel. If you don't know what it is, I'll leave it up to your imagination. Hint: It has absolutely nothing to do with wearing scrubs or cleaning). Since there's not much to say about that, I thought I would talk about confidence and how it has impacted me.

Over the summer I volunteered at a nearby pediatric hospital. While I had done it the summer before, this year they placed me at the front desk as opposed to being in the back filing papers. I was really excited about this, as it's obviously more a lot more interesting to get some interaction with patients and parents. I was in charge of giving directions and walking people to their destinations in the hard-to-navigate hospital. I certainly feel like it taught me quite a bit about speaking up for myself, as you can't exactly bluff when you mishear the location you're supposed to be bringing someone! As time went on, I also built up the confidence to go up and ask people who seemed to be wandering and lost if they needed help. People view you  completely differently when you act like you know what you're talking about.

This brings me to the school year. The (semi-)confidence to talk to complete strangers has proved essential for yearbook, since we have to ask people permission before taking their pictures. This also means getting shot down over and over (and over!) again, but I guess that's just another life lesson! It has also transferred over to my other classes, such as when I asked my teacher to change my seat since I was facing the wall instead of the front of the room. She was more than happy to move me, but I don't think the girl I traded with was too crazy about having to strain her neck for 50 minutes every day. Not sure why they position the desks like that anyway...

I also  built up the confidence to run for an officer position of my school's French Honor Society. To back up a bit, I had never been in the officer position of a club before until I decided to run for my school's Red Cross Club. My friends and I were pretty much the only freshmen in it last year, so this year all 5 of us are officers since there wasn't really anyone to run against.  We're hoping to get more students involved! Anyway, running for FHS officer was the first thing where I'd actually have to compete against other people for the position. Luckily for me, the winner is chosen by having an interview with my French teacher instead of having to give a speech and have members vote (baby steps!) To be completely honest, I wavered back and forth about whether I wanted to interview, and wasn't going to do it until the tutorial session I was going to attend before school was canceled, and I was already at the school so I had nothing better to do but to go and interview for the position. I hadn't prepared at all, but I managed to win the position I wanted, so that was pretty exciting!

Sophomore Year- Week 1

So far, everything has been pretty good and my teachers have been wonderful (knock on wood). We've watched a few movies, and every time they have either been captioned (knock on wood), or the teacher has told me in advance and worked out how I will get the information. My hearing has been great (knock on wood) and I actually went for a mapping before school started, but chose to stay on my old program. That's the first time I felt like I was hearing well enough that I didn't want to change to something new. The FM has also worked pretty well (knock on wood) and the teachers have been great about passing it around.

The workload hasn't been terrible (I'd say knock on wood, but your hand is probably getting tired), and I am so glad I chose the electives I did. While my friends are spending their time reading studying and reading for quiz after quiz for their AP elective class, I get to go around taking pictures for the yearbook! Obviously, once we have more pictures there will be more work in designing the pages, staying after school, going to outside events, etc. but I would much rather be doing this. I can't remember if I said this before (I probably did) but I am also taking a medical science class, which will hopefully lead to me securing a spot in a program next year where students get to observe doctors of all kinds as well as surgeries. We haven't started doing any in-depth learning yet, but I can tell it will be something that I will enjoy. We're also going to be learning how to use stethoscopes properly in the coming weeks, so if anyone has experience/ advice on using a specific brand stethoscope with a cochlear implant, please share! There is another person taking the class with CIs, so the school is looking into purchasing one. We'll see where that goes!

I turn 16 on Labor Day and will hopefully be getting my license soon after, as I have to take yet another test due to the crazy laws that Texas passed and put in effect starting with the teens getting their licenses literally a week before me. I would be grumbling about having such a borderline birthday, but if I had born a week earlier I would be a Junior, so I guess I can't complain! Here's to another good week!

Alarming rate of teen hearing loss

I figure most of you have heard this by now, but being a teen I think it alarms me that much more to consider the number of friends that I have who will likely require hearing assistance when they are older. So, I'm posting this for those who already haven't already heard...


1 in 5 teens in the US has a slight hearing loss.*

1 in 20 US teens have mild or worsening hearing loss.

This is a 30% increase since the mid '90s.


Links:
Yahoo! Associated Press Article 
USA Today Article

I think the problem is both a lack of education about noise exposure, as well as the all-too-common idea "it won't happen to me." The other day I got into my seventeen year old (hearing) sister's car, and as soon as she turned it on the car was shaking with the radio blasting at full volume. I could feel the beat in my chest, and could hear the low frequency sounds pumping without my implants (I can tell when I'm able to hear something with my residual hearing alone. It "comes through" differently.) I glared at my sister, and she turned off the radio. Lately she's been complaining about hearing a buzzing or ringing in her ear. I went on to tell her that this could damage her hearing, and that this tinnitus could actually be a sign of hair cells in her cochlea being killed off. She was actually surprised, and went on to ask me why *I* get to turn my iPod speakers up so loud. "Well, sis. I don't know if you've noticed yet...but I'm already deaf! I've got nothing left to lose!" (I suppose she doesn't think it's fair). I'm pretty sure as soon as I got out of the car she turned the radio right back on, but who knows. I'm sending her this article.


*"Slight" hearing loss in teens is consider to be a loss of 16-24 dB, and most of these are in only one ear. It is important to realize that many hearing aids (and even cochlear implants) don't always amplify/provide sound down to this level, it is very quiet. With my cochlear implants, the softest sounds I can hear range from 5-20 dB. With my hearing aids, it ranged from 40-80dB hearing loss (or so, this is based off of my memory). However, as these teens with hearing loss grow up and lose hearing from age-based hearing loss, they will need stronger hearing aids earlier, such as in their 40's rather than 50's, 60's, or 70's.

A little bit of everything

Full disclosure: For the past couple of weeks, I've been feeling burnt out and tired of the hearing loss "world", and felt like I had nothing left to give or receive.  I was all but ready to take a break, but  just today had some exciting hearing related things occur that I will share once everything is final. It gave me another "kick" and a renewed fire for writing about hearing loss issues. Can't say how long it will last (you can partly blame the great hearing my CIs have been giving me-less substance to write about!), but I have no doubt I'll have plenty of material once school starts next week. Hopefully not as much as last year, but we'll see!

Today I went to the orthodontist for follow-up x-rays and pictures so they could have "before" and "after" images from my having braces. It was with a different lady than the couple of different assistants I typically dealt with, so she wasn't quite as aware about knocking off my processors (which seems to happen every couple of minutes, regardless). We started off by taking head x-rays, so I told her I was going to take off my "hearing aids", trying to imply I wouldn't hear. So much for that. She was talking the entire time instructing me, and half the time she would turn the other direction and I could only see her lips moving from the side. She seemed frustrated that I wasn't following her directions, and I probably should have just said something along the lines of "I can't hear you...at all." but didn't feel like it. Instead, she kept pointing to her lips and talk while gesturing. I'd nod- she wanted me to put my lips together, I got it! After about 5 X-ray attempts I discovered she was telling me *not* to put them together. Oops. She probably thought I was pretty stupid.

After this, they needed to do a series of molds of my mouth, which consisted of me biting on various colored pieces of wax. It was easy enough, until she stuck a piece of wax on this hard contraption, had me bite on it, used a screwdriver to screw some sort of pole into it, which connected to some sci-fi halo looking thing that went around my head. She then instructed me to put some pieces in my ear, and I was secretly grateful that I no longer wore hearing aids. Of course, I somehow managed to push off my processors. I still fail to see why this entire contraption was necessary just for me to bite on a little piece of wax, but what do I know?

A month or so ago, I got a car :D I must thank my wonderful parents, and I have been practicing in it with my parents to prepare for the big test, which is coming up very soon! Anyway, my mom was out of town for a few days this weekend so my dad let me park my car behind her garage spot. Before she came back this evening, I had to move my car and parallel park it back in front of my sister's car in front of our house. I can parallel park somewhat behind cars, but have never done it in front of them. My dad asked me to do it myself "because I fully trust you", he said. (Translation: my leg hurts, and I don't feel like walking outside to sit in your burning hot car). And no, he wouldn't dare look out the window to watch me either. So I spent some 10 minutes hopelessly moving the car forwards and backwards, until my dad wondered what was taking me so darn long and wandered outside. He laughed, and then attempted to instruct me on how to park my car. For the record, he wasn't good at it either- I basically went forwards and backward  a million times, turning the wheel the way my dad said only for him to shout "oh, never mind! other way!" About 5 minutes into this ordeal, I saw my ENT (who also happens to be our neighbor) walking his dog across the street. I watched him as he squinted and stared for another 5 minutes, as we probably looked like crazed idiots as I attempted to do this parking thing. After a total of 20 minutes, the mission was accomplished: slightly crooked, and a little too close to the curb, but it was done!

The Remote

The Nucleus 5 CP810 processor comes with a remote. It certainly seems to be one of those love it or hate it sort of things. I don't think it should be a deciding factor in choosing an implant/processor, but I can't say how many times I've heard "You should get brand X because you don't have to fool around with the settings or have to deal with a remote." Or, conversely "I chose the Nucleus 5 because I loved the idea of having a remote!" 

FYI, I rarely fool around with the settings on my processor, and I use the remote even less. I have an everyday setting which I am on at least 90% of the time. If I am listening to music alone in a quiet place or at an orchestra concert, I'll put it on the music setting, but I can still appreciate music very well on the everyday setting. Or, if I'm in a noisy restaurant, I'll put it on the Zoom setting, which I finds gets rid of most of the background noise without dampening voices. Cochlear has a few different settings for noisy situations, and each one is a bit different. Noise, Focus, and Zoom are all available, but it really depends on personal preference which one you use. The Noise and Focus options are both separate programs. This means that on the home screen of the remote (or on the buttons of my processor) that I just press which one I want to change it to. It's really easy, and I can easily see which program I'm on.

Here is the summary of Zoom from Cochlear's website:
"Nucleus 5 is designed to enhance hearing performance in noisy environments. A new signal processing path with dual omni microphones has created a new platform designed for better hearing performance. Dual microphone technology has been shown to improve speech performance in noise. Recent research also shows that the Nucleus 5 Sound Processor Zoom™ Power Option may result in even better performance in noise"

Notice this is sentences *in noise*.

Getting to the Zoom setting is a bit different than getting to Noise or Focus, since you can add it on to any of the programs (Everyday, Noise, Music, or Focus) that you're already on. I typically add it to the Everyday program, but you have to get to the processor settings menu to enable it, and back to the processor settings menu to disable it. On the home screen, there is no notification of whether it is turned on or off. 

Why is this relevant?

Well, for the past week I've noticed I've been struggling quite a bit to hear, even in one-on-one, quiet situations. I figured I just needed (another) mapping, and shrugged it off. I hadn't bothered with the remote in a while, so as I was shutting it off to put it in my purse, I decided to do a quick check through all of the settings. The volume and sensitivity looked okay. I was just about to put it away, when it hit me...

I'd gone out to a noisy steakhouse a week ago. I set it on the Zoom function, then put the Remote away. Had I ever turned it off?

I quickly went to the "Zoom" setting to see the option to disable it, mean it was still turned on.  I felt stupid, yet relieved.

My hearing has since seemed much better. *Whew* I think when Cochlear has a software upgrade for the remote, they should have a "dashboard" setting where you can see everything that you've changed from the default settings. I can't be the only one who's made this mistake! Sad thing is, it's not the first time. Usually I figure it out within a day or two, though.

AG Bell (2)- Friday Afternoon and Evening

On Friday afternoon, we were given the options to listen to listen to some of the speakers. They gave us a list of sessions that they though might be interesting to teens, and we signed up for the ones we wanted to go to. I went to three and they were all very good. Here is a brief summary of them:

Teen Tales of Hearing Loss
Presenters: Melanie Paticoff, James Barden, and Patrick deHahn
I have blogged about Mel Paticoff before, and was interested in hearing the session that she was leading. It was basically a panel led in a question and answer format, which were both pre-written questions and questions the audience came up with. It was nice to hear other teens perspectives, although I suspect this was more interesting and helpful to the parents of tweens and younger kids who were wanting to know what their children would be going through in the future. They touched on a variety of topics from school (both guys had attended an oral deaf school when they were younger, then transferred to a mainstream school); the decision to get cochlear implant(s) (One had been implanted when he was 5 or so, the other when he was 11/12. The former chose to go bilateral when he was a teenager, but the latter doesn't want to go through surgery again); and explaining hearing loss/devices to your peers. It was all very well done and planned, and I do think everyone got a lot out of it. One person mentioned it would have been nice to get the perspective of a girl teen with hearing loss, and I think that is a good point. From the looks of the program, it sounds like they had planned for another person to be on the panel who was a girl, I assume a conflict came up.

College Life 101
Presenters: Mark Leekoff, Ari Sagiv, Dorie Shapiro, Lindsey Rentmeester
This was another panel, and since I attended the same session at the last convention, I had a pretty good idea of what to expect (although it was all different people). It's fascinating how one person's experience can be vastly different from that of another. Most of the panel from the 2008 convention, if I recall correctly, said that while they didn't outright state their hearing loss when applying for college, they mentioned it in their application essays. One person on the 2010 panel said that they did not want to disclose their hearing loss, a couple of people said they did, and one even went as far as saying that it would be dishonest not to disclose it. I do think he had a point there, and he went on to say that if a college doesn't want you with your hearing loss, you really can't expect them want to give you accommodations. That being said, the panelists still had issues with accommodations even if they did disclose their hearing loss. One girl remarked on the irony of being in an Audiology program, and having the school come to her and question her need for CART and other assistive services for her hearing. I don't think she said the name of the Grad school, but she ultimately made the decision to leave for another school that she felt was a better fit. It also came to light that even with the ADA in place, people won't necessarily follow it. One guy was saying that in an interview (for medical school, I believe) the interviewer actually asked him "I know that many people with hearing loss have multiple other health problems. Do you have any other health issues I should know about?" This, I came to find out, is illegal and a huge red flag. The only thing that you are allowed to be asked in an interview regarding hearing loss or any other disabilities is "Do you have any disability that would interfere with your ability to do this job?" The interviewee does have the option of bringing up and talking about his/her hearing loss as much as desired, but it is not required. I learned a lot from these speakers.


Health Care Professionals: Learn from our Experiences
Presenters: Stacey Carroll, Ph.D., ANP-BC; Christopher Lehfeldt, DDS; and Lindsey Rentmeester, Au.D.;
I was really looking forward to this session, since I had not ever met someone with hearing loss in the medical field.  The panel featured a deaf dentist, nurse, occupational therapist, and audiologist. They also planned on having a deaf physician there, but he ended up having a family emergency and was not able to make it. There was a wide age range, from (these are my estimates) mid 20's to 40's. They all had great stories to tell, and the vast majority of the people that spoke had experienced an overwhelming amount of adversity and doubt when going into the medical field by teachers, bosses, and employees, but were greeted with open arms by patients. I found this to be very interesting, as I would have thought gaining a patient's trust would be the biggest problem.

The occupational therapist told about her first rotation as a student, in which she was placed with a teacher/boss who pretty much from the first day told her he was going to fail her because of her hearing loss. She described her frustration with working with someone determined to fail you, and how discouraged she became, even taking some time off after to decide if it was still something she wanted to do. She ultimately persevered, but this really demonstrated to me how much harder we (people with hearing loss) have to work to prove ourselves.

The nurse spoke about only the students with the 30 best GPA's getting into nursing school. She had an extremely good GPA, and recalled her professor calling her into his office to tell her she wasn't going to go on to nursing school. She was a little bit confused, and asked if she had not been in the top 30. "No, that's not it." the professor had said, "It's just that you're... 'unique.'" She went to the dean of the school (who, by some stroke of luck, happened to have a deaf son) who assured her that he would handle it, and she obviously ended up getting in!

One thing I found really exciting is that they have developed transparent surgical masks (patent pending), and are just waiting on a manufacturer. This is great news, not just for health care professionals with hearing loss, but also for patients with hearing loss. I cannot tell you how many times I've had to remind my dentist or orthodontist to "take off the mask, please" when they are talking to me (this is typically when one or both of my CI's have been knocked off in the chair!) They passed around the mask, now I'm wishing I had taken a picture.  The part that goes around the face/lip area is transparent, but the part that goes under the chin is made of the same material as typical surgical masks, as is the part that hooks around your ears. I really hope they are mass manufactured soon, as there is a huge need and consumer audience.



After a long day of speakers, one of my friends from the past convention, her mom, my mom, and myself rushed to catch the shuttle to go to Downtown Disney. It was really cool, with a bunch of shops and restaurants lining the path. There had been some confusion as to what time the Opening General Session started that evening, and we ended up missing it, so I can't comment on that. We got there right in time for the Exhibition Hall grand opening/reception. This year, they were clever and gave out "game cards" with 9 of the exhibitors names' on them. Each card was different, and the idea was to get stamps from all 9 of the exhibitors on your game card. You then placed the card in a drawing, and were entered to win one of many great prizes (an iPod; all expenses paid for 2 people for the next convention in Scottsdale, AZ; a ton of books from the AG Bell bookstore worth hundreds of dollars, and more).  Of course, in the process, the exhibitors would try to get you interested in their products.  We didn't win, but I still loved the idea.

I explored the exhibit hall with a couple of my friends from the teen program, and they really did have a lot of things in it. There was a lot of free stuff! As always, the 3 CI companies had gigantic areas as opposed to a tiny booth that most other companies had. We received a lot of goodies from Cochlear- from cookies to beach balls to tote bags. We also got our picture taken with Kayci the Cochlear Koala, but we had to leave before it was printed. (if any Cochlear employee still has the pictures and wants to email it to me, please do!)

Adorable

*Note to viewers* Don't bother going on YouTube to read the comments unless you feel like reading a debate that is completely irrelevant to the cuteness of this video :)

Spreading Awareness- That's Just the Way We Hear

Many of you guys have probably heard about Mel Paticoff. She's the creator of HearingExchange Teens on Facebook and the author of Sophie's Tales, a cute little book about Sophie, a dog who has a cochlear implant. She has several family members with hearing loss and is currently studying deaf education. For last year's Better Hearing and Speech Month competition, she created a music video with her family called That's Just the Way We Hear. It was to the tune of the Jonas Brothers' That's Just the Way We Roll, and won first place in the contest! It even has captions, so that all of its viewers can fully enjoy it. Here is the video:



DoSomething.org is holding a Battle of the Bands competition to fight to keep music in schools. For this competition, Mel and the rest of her crew decided to remake the video.  Here is some info about the video included on their Battle of the Bands site:
Why is music education important to you? 
Music education is so important to us because it can make a HUGE difference in the lives of kids with hearing loss. If no one takes the time to introduce them to music, kids with hearing loss might not develop the same appreciation for music as hearing kids do, even with amazing cochlear implant and hearing aid technology. Yet, if they do learn to love music, it could improve their lives in a lot of ways! It will improve their auditory listening skills and social skills in big ways. We feel that this is definitely where music education money should be spent first...
Anything else we should know about your Battle of the Bands video project? We want you to know that our dream is to re-record the video with the Jonas Brothers. They have done a phenomenal job of raising awareness about different causes including diabetes, Down Syndrome, and "going green." We really hope they will consider adding hearing loss awareness to this list! It would be a dream come true to hear "That's Just the Way We Hear" played at one of their concerts, on JONAS, or on the Disney Channel. We also want to remind you to turn on the captioning! Unlike many videos found on YouTube, we took the time to make our video accessible to EVERYONE by adding captioning. Now everyone can understand our message loud and clear! 


And here's the new video (also captioned)...


In order for the people in the video to achieve their goal, we need to vote for their video! It's very simple, just go to http://www.dosomething.org/bands/entry/sophies-tales and scroll to the bottom where it says "Login to rate this video." and click on it. If you don't already have an account,  press "Create New Account" and come up with a user name and password. Once you do so, a confirmation email will be sent to you. After opening the link in the email, you will be able to rate the video at the bottom of the screen. Be sure to give it 10 guitars, and help Mel win the contest!

Nucleus System 5- My Experience

Well, I finally got my new processors on Tuesday. When they say it takes 6-8 weeks to arrive, they're not kidding! I did get pretty impatient, but the important thing is that they did come. Here are some pictures... *sorry for the blurry quality. These were taken from my phone, since my sister decided to steal my camera, even though she has her own....sisters!*

On the left if my pink Freedom (the beige thing is the FM boot), on the right is my brown N5 with the pink cover.

Left---> Right Freedom, N5 with pink cover, N5 with blue cover.

Brown N5 on my head- side view. Please excuse the messy hair, I just put it up to take the picture :)

The remote...  I definitely think that's more of a personal preference thing. As someone who always has a cellphone in her pocket, it's no big deal for me to carry it around. It's pretty user-friendly once you take the time to figure out how to adjust all the settings. The only thing I wish they would add (possibly with future remote software upgrades?) is the option to have certain settings as "favorites" in the remote (similar to in a cell phone) that you adjust the most, making them quicker and more accessible to get to. Another thing is, it look like an Mp3 player. Or a cellphone. Or some combination of the two... What's the problem?

We're not allowed to use them in school, so I'm always completely afraid I'm going to get yelled at for having my "iPod" out in class, or even worse, have a teacher not listen to me and take it up. I don't adjust the settings too much, but I try to do it pretty discretely when I do- so far, so good.

AutoPhone- Would someone please enlighten me how the darn thing works? I know for a fact I have it, because my audiologist knew I wanted to try it out, and I saw her check off the little box for it. However, it's failed to come on every single time I've been on the phone (and I've used three phones- my cellphone, our landline, and my sister's cell). I  can hear better without T-coil than when I manually enable T-coil, so I don't mind it now working.. I just want to know if there's a way for it to work! My audiologist said it's voice activated, so the person on the other end has to have spoken for a few seconds before it detects it. No luck!

The view from behind- It's much, much thinner than the Freedom. I really like how I can make it stand out with the covers, or I can make it blend in completely. From the front, you really can't see any of it (my hair covers the earhook), unlike the Freedom, which was pretty bulky and noticeable from the front.

Battery Life- With the Freedoms, I barely got a full day of battery life, so I was worried that I wouldn't get very much out of the N5 (which use 1 less battery). The computer estimated that my right ear, which has a very strong map, would last 16 hours. It predicted my left ear, which has an even stronger map, would last 13 hours. Not quite a full day, but close enough. Yesterday was the first day I actually got to wear them all day (Tuesday- I didn't get them until my 9AM appt. Wednesday- I had French Honor Society inductions in the evening, and changed the batteries before  I went just in case, and Thursday I had a ton of reading to do and a very loud family, so the implants came off during my reading time). I put them on yesterday at about 8AM and I didn't get a single low-battery warning, even though I went to sleep at 12:30 AM. I'm pleasantly surprised that they actually appear to be lasting longer than my Freedoms did (weirdly enough, although partly due to my use of the FM boot on one Freedom). I know a lot of people really want the rechargables, but I never used them with my Freedoms, since they died during the school day, so I doubt I'll use the rechargeables for the N5 when they come out.

FM- There is not yet a boot released for the N5 for FM, so I have to use a neckloop with T-coil called the MyLink. While it's nice to have less on my ear, it's not exactly a fashion statement to walk around with a neckloop all day. I put the bottom part under my shirt, but I don't normally wear T-shirts, so a good portion is visible. I had to go a few days without the FM, and it made me realize there were come classes I really needed it for (French, my AP classes) but I also realized there were some that I could hear just fine without it. I think I may just "play it by ear" (heh..no pun intended) and only use the FM depending on what I'm doing in each class each day. When it's not in use, I can just take the FM off, so it's not a big deal.

Hearing- I was MAPped the same day I received the N5s, so my hearing is better than it was on Monday, but I don't know which I can attribute it to. I'll have to try out my Freedom again and see if I notice a difference, but I was told that, if I did, it would be pretty minimal. We'll see.

Funny story... I had taken off my FM neckloop in one of my classes, since we were just doing bookwork. The girl who sits next to me asked about it, and I lamented how I found it kind of annoying, but mentioned it was because I got new, smaller processors. I figured she's noticed since I'd worn my hair up the day before, but I lifted my hair up and pointed it out to show her anyway. "Ohhhh!" she exclaimed, "I was wondering why you hadn't wearing anything on your ears... I see it now!" 

Support David's Project

Calling all kids, their parents, teens, and adults with hearing loss!

I have a wonderful project to share with you, and it calls for your participation. David Cluff is 16 years old and has bilateral cochlear implants. He is extremely involved in his community, and even started a Cochlear Implant Teen Support Group at his local hospital.  David is also working towards becoming an Eagle Scout, part of which involves doing a big project.

For his project, David has decided to make a website for people of all ages with hearing loss and share their stories. He wants it to be a place where deaf teens can help each other, as well as for people to read the experiences of others with hearing loss. David's blog site can be found here.

There is also a Facebook fan page for the project, which can be found here.

If you would like to participate, go to one or both of the websites mentioned above, and email David at davidcluff2012@gmail.com with your story. I encourage everyone (even the lurkers) to participate!

Thanks guys :)

Perlman

I got very little sleep last night. In addition to having a huge test today, I went out last night. Where, you ask?

Why, to see the famous Itzhak Perlman!

At the moment you are either thinking "WOW!" or you have a very confused look on your face. That's okay. None of my friends knew who he was either

He's one of the best violinists EVER! He was born in Israel, but I believe he now lives in the US.You can read more about his accomplishments here.

It was amazing. I had to leave at the intermission because it was late, and I had to study. We had front-row (as in the VERY FIRST ROW) seats, which was pretty cool. Howevere, they were at the very right edge of the stage (where the Cello section of the orchestra sits) and the violinists sit toward the left area of the stage. If they dropped a cello, it would've landed on me :P. After the first song (out of 3) they moved him and I could only see his foot from the angle I was sitting. I could hear him great though, and put my left ear on my music program for even better enjoyment (I thought having it on both ears would be a bit too much) Anyway, it was really cool. Not only did he play really well, but he conducted the rest of the orchestra during the songs he played! How awesome is that?!

There's another thing about Mr. Perlman. It's not the first thing many people mention it when talking about him, since it's irrelevant to what makes him so amazing. As a child, he contracted polio and now must use either crutches or a wheelchair to get around.  He used crutches at the performance I attended. He struggled to get on the platform which he had to perform on. After 5 minutes of him trying various methods of getting on the platform, and with the rest of the violin section looking quite nervous that he would fall, he made it in his seat. He turned to the audience, laughed, and gave a thumbs up.

I just love his attitude. He displays such intense emotion while he plays, you can see that he feels the music within.

I looked up some of his quotes, and stumbled upon this,

" Sometimes the wheelchairs don't arrive, the chairs are broken, or there's only one leg rest. There's an awful lot not being done. If we talk about it enough, someone will make it improve. "

I couldn't agree more, Mr. Perlman. I couldn't agree more.

Unexpected Twist

The day came, and we were armed and ready.  Both of my parents went to the meeting, which is a pretty big deal since usually it's jut me and my mom. My dad went around asking each person their name and job description, and there was a strong feeling of tension in the room. My dad, a lawyer, was being quite successful at being intimidating. That is, until he asked what an IEP is... Then everyone in the room started revealing their true selves, as they no longer saw him as much of a threat.

My parents began talking about the unfairness of the evaluation and handing out my audiologist's letter. My dad requested an independent evaluation.

"No. That's not necessary," said the lady who was mostly in charge of the evaluation So, apparently they can say no.. Guess we weren't expecting that to happen..

She then went on to say that  in Special Education, in order to show a need for further services, you cannot be making any progress with the assistance/IEP currently in place. With the A's/high B's I currently have, that doesn't demonstrate that I'm failing to make progress.

"I have no doubt that you have to work much harder than everyone else, but that's just the way the law works."

My parents urged me to tell my story, from my point of view. (I'd already done it at every past meeting, but they wanted the people who performed the evaluation to get a better understanding of what I go through)

I told my story about how frustrated I was at the school. How I felt as if sometimes, I didn't even need to go to school because I missed so much of the discussion, it's worthless. That I didn't understand why they were fighting tooth and nail to prevent me from having something that could actually help me. I told them how tired I was. Tired of trying to keep up, tired of fighting- just tired. Sometime during those sentences, tears started streaming down my face. Ugh, I hate crying, especially in front of people I don't like. Yet, that's what happened at every single meeting ( I would then swear I'd never attend another one, only for the whole thing to start all over when there was another meeting.)

"Oh! I wish I'd known you were this frustrated when we'd done the evaluation. This changes everything." Everyone looked up at her...was she kidding?

"I had no idea this was taking such a toll on you and that you felt you needed it so much." Yeah. Because I just asked for CART because I thought it would be fun to fiddle around with...? (note sarcasm)

The lady then said that while I don't have an educational need, that she could put down that I have an emotional need and get me CART that way.

As, I'm sure you can imagine, that was the most bizarre 5 minutes of the meeting. Heck, that was the most bizarre 5 minutes of my life! Pretty sure this song started playing through my head..

(pause music at the bottom of the page)


Not so fast..

"But," she continued, "you'd still have to change schools."

Change schools? You see, they don't offer CART at my school, and aren't planning on it, no matter how much I beg/plead/cry. But, they do at another school that is about as far away as my current school from my house. This other school is a mainstream school, but it's smaller and has a fairly large deaf ed program. They send all the kids in need of CART or interpreting services there. Apparently it's cheaper/more efficient to have it all on one campus.

This meeting was halfway through the school year. I'd finally been adjusting to my new school. Now they wanted to toss me somewhere else? As much as I struggled at my current school, I have a great group of friends, and nice teachers. They just want me to walk away from all of that?

So, that leaves you where I am now. The decision making process. A little bit has happened since then (technology-wise), and I will post more on the pros and cons of each school.

But, for now, my wonderful reader, I leave you with that. I would really appreciate any more input you have, with regards to the current situation. What do you think...What would you do?

*I'm experimenting with my blog banner at the top. Still haven't been able to make anything I like, since I don't have any tools like Photoshop or InDesign at home. If anyone is generous, gifted in the design department,  and would like to design something (for free) then it would be completely awesome!*

School/CART Stuff- Part 2

Two days before the promised evaluation report was due, I noticed two women who were at the previous meetings about CART come into my class. I should probably note that we specifically told the evaluators that they should contact me or the teachers with the days they were thinking of coming, so as not to come on a test or video day, The teacher had told them they could sit in the back of the room. Right after the bell rang, my teacher said, "Oh, by the way, they're going to be taking a test for the entire class period. I hope that's okay."

One of the evaluator ladies got an angry look on her face, said, "No." and walked out. The other one followed.

Okay, then...

The next day, the two ladies reappeared in a different class. This class is one of my hardest, largest, most discussion-based classes. I expected them to come over and talk to me, or at least look at my notes sometime during the class. Why do that when you can simply sit in a chair for an hour?

The day they came, this is how the class went:
-We took a quiz over the previous night's reading
- There was a small amount of lecturing followed by a large amount of class discussion, which I struggled to follow and didn't participate in.
-We had to work on something individually
-We then had to discuss it with our table partner. It was really noisy, and the girl that sits next to me seemed to be much more interested in flirting with the guy in front of us, so I didn't get much out of that discussion..

The class ended, and the women left .As promised, the evaluation for CART was delivered to me the following day. I knew, from their one observsation, that the whole thing was going to be a joke. Here are some quotes from the evaluation.

"We did not see (LAM) enter the class discussion. She watched and did not appear to be confused."

"Socially, she appeared comfortable with her table partner. They did not appear to have difficulty communicating with each other"

"The cafeteria was very loud and she appeared to have no difficulty communicating. She was smiling and animated while conversing with her friends." No, I was not aware that they were watching me from across the cafeteria at lunch. The idea of it makes me strangely uncomfortable, in addition to the fact it's completely unrelated to the trouble I have in the classroom.

And, here comes the best part, which they said after stating their denial of CART,

"It is even possible that CART would be a hindrance to her during classroom discussions because of the lag time between the speaker talking and the captioner producing the printed word. She would be listening to one set of information while reading what was said previously. Taking into account the (ha!) quiet environment and her ability to use her cochlear implants to listen and speak, it was though that CART might be a disadvantage to her classroom access and performance."

Isn't it just absolutely amazing how much you can gather from watching me for an hour? Because, as we all know, it's not like people with hearing loss bluff or pretend to understand  or anything. We just do our best to appear utterly confused and dumbfounded whenever we misunderstand or can't hear something.
(Please note the sarcasm...)

It just kills me how every single observation they made is about how I "appeared" to comprehend or I "appeared" to understand. They're judging my acting, not hearing, skills.

This occurred before the winter break. My next post will be about the meeting we had following this evaluation...