Monday, December 20, 2010

School's Out...

(for 2 weeks)

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!

Friday, December 3, 2010

Just one of those weeks

It's not a hearing thing.

I used to think it was, until one day at lunch my friends were describing how when they're really stressed out at school, the smallest things will set them off into a fit of crying. Ha! I actually am normal!

Maybe it's a girl thing? A perfectionist thing?

This week has absolutely sucked. (sorry Mom, I know you hate that word..)

I would go as far as to say this week was the most stressful, upsetting week of my one and a half years in high school. All of my teachers are being forced to squeeze in a ton of last minute projects and assignments. I don't think they like it anymore than we do, but, quite frankly, they're not the ones running on 4 hours of sleep.

So, that in addition to some family stuff to deal with --> me=disaster. Every little thing set me off.
Friend/family member: Hey, how was your day?
Me: *cue blubbering hysterics*

Just lovely. On Wednesday, I had 2 very large projects due, leading to my lack of sleep (and even on those 4 hours of sleep, I wasn't able to complete all of my homework. I got to spend my lunchtime working too!) This morning (Friday), I was finally feeling relaxed. I had no tests or quizzes to study for, and all of the projects for the week were turned in, and I was finally going to be able to get some sleep tonight. I just wanted to print off a copy of a powerpoint we were using in one of my classes so that I would have an easier time listening rather than concentrating on taking notes.

I went to the printer to retrieve the notes, but it was out of paper. I refilled the paper. I looked down expecting my powerpoint notes to be printed.

The first thing that printed was the last page of my English project. The one I had stayed up working on until 2 AM. The one that was due on Wednesday. It was the last two paragraphs (i.e, the last 20 points).

*Insert full-out sobbing and shrieking here*

Thank G-d my teacher likes me. He apparently took sympathy on my teary, puffy-eyed self and insisted that it was fine since he hadn't graded it yet. It's good thing he accepted it, because I may have otherwise had a complete mental breakdown on the spot.

This week is over. Now I have the onslaught of projects for this upcoming weeks. Just 2 more weeks until Winter Break. I can do this. Right?

Happy Hanukkah to my Jewish readers. I've barely had time to celebrate, but I will write about it later on!

Sunday, November 28, 2010

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!)

Friday, November 26, 2010

AG Bell Article

Click on the picture, and it should expand so that the words are legible.

Monday, November 22, 2010

Check it Out!

If you're an AG Bell member, check out the latest issue of Volta Voices. More specifically, page 38 featuring yours truly :)

If you're not a member of AG Bell and would like the article emailed to you, just let me know. I'm going to see if there's a way I can post part of the PDF on here.

Sunday, November 21, 2010

Getting Creative

As long-time readers probably know, getting captioning on school videos has been a struggle for me, (and I'm sure many other D/HoH students as well). All of my teacher have dealt with the situation differently, and sometimes I can understand the video pretty well without captions, so long as I don't have to take notes and can just concentrate on the listening part. Other times, it's some animated video narrated by an Irish guy, and I'm completely lost. In one of my classes we're watching a video that takes 3 class days to watch. It's in a two year class for freshmen and sophomores, so I had these teachers (there are 2 teachers- I have 60 kids in my class) last year. They've always been really accommodating and helpful, so they made sure to get a video with subtitles.

Well, once they went to play it, they discovered these subtitles were only available in Spanish or French. So, I got a summary of the movie, plugged my FM into the speakers, and used French subtitles. I could understand a large amount between my hearing and  French skills. It actually wasn't too confusing reading in French while listening in English, and it wasn't certainly much better than having nothing. I always thought learning French would come in handy, but being able to read French subtitles never really entered my mind!

Monday, November 15, 2010

Raising money for a good cause

And  all you have to do is watch a sweet little video! Every time this video is viewed, various sponsors will donate 2 cents to the American Society for Deaf Children. I must admit this is the first time I've heard of this organization, but it sounds like they do great things and the video is pretty cool!

Monday, November 8, 2010

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 :(


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! 

Saturday, November 6, 2010


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!

Thursday, October 7, 2010

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:



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


** 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. **




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.

 -- 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.
 --  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: * " ' / \ @ &)


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:
-  Or include it with your "hard copy" DVD submission in the mail.

2.  Upload your video.  Here's how:


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

- 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!


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.


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:

Deaf teacher publicizes discrimination, gets suspended

So it just seems that there has been a lot of hearing loss/discrimination related new in my area lately. This article caught my eye when I was reading the newspaper this morning (Yes, I read the paper and always have. My friends like to make fun of me for doing so, but I'm always well informed!)

My summary: Kathleen Nosek is a deaf special ed teacher and has been teaching at the same school for ten years. In the past couple of years the principal of the school, Amy Miller, began insisting that Nosek administer pronunciation tests to her students herself. In the past Nosek had other teachers perform this test (which only had to be done a few times a year) for her, and it wasn't a problem. When Nosek told Miller that her hearing loss made it extremely difficult to accurately perform the tests, Miller questioned whether Nosek's hearing loss made her unfit for her job (which she's been doing for years just fine!). Well, Nosek chose to bring allegations of harassment and intimidation by Miller before the school board. The morning of, she had a local news reporter in her classroom and was interviewed. This led to her suspension.

The full story along with hundreds of comments is available here. If you ask me, this story is blatant discrimination, and her suspension is just the tip of the iceberg.

The news reporter published a blog post with a few clarifications and updates, available here.

Saturday, October 2, 2010

Followup Article- Deafness in the Legal System

Yesterday, I posted about a deaf man freed after a DNA test proved him innocent of a crime  that he had already spend 20 years in prison for.

Today, I saw a great article that talked about his conviction and exoneration, with much of the focus on his deafness and how it impacted the case. Here is the link to the article, along with some quotes that I thought were noteworthy.
  • "Prosecutors don't routinely check whether a deaf defendant had a certified interpreter during police questioning, or whether the defendant's written words would have a different meaning in American Sign Language."
  • "When Richardson police asked Brodie in writing why he abducted and sexually assaulted the girl, he wrote, "I don't know WHY?" Those words were taken as a confession until the district attorney's office began reinvestigating the case."
  • "They said police should use a certified interpreter who is trained to sign legal words like those that come up in Miranda warnings when officers ask suspects to waive their rights. Elliott said the ideas of waiving your rights to remain silent and to have an attorney don't automatically translate in deaf culture. "
  • For 20 years, authorities have said that the 5-year-old victim told them her attacker spoke with a "clown" voice. Police and prosecutors have said the girl was describing how a deaf person speaks. But a recording of the interview shows the girl actually told police the man had a "low voice." 
    • My side note: What the heck?! What does a "clown voice" even sound like? I don't think I've ever heard a clown talk...

Thursday, September 30, 2010

Wrongly convicted deaf man freed after 20 years

Not the type of stories I usually post, but it was in the newspaper and caught my eye. Thought it was interesting, and wanted to share!

Stephen Matthew Brodie, 39  lost his hearing to meningitis at 18 months, and communicates using ASL. He was convicted of sexually assaulting a five year old girl in 1990. Turns out, he didn't actually do it. The following quote from the article really struck me, and I wonder if this sort of thing still occurs today. It wouldn't surprise me, but it's still upsetting.
"After 18 hours of questioning over eight days – much of it with no sign language interpreter present – Brodie had pleaded guilty[.]"  ADA, anyone?! 

Ironically enough, his deafness was the very thing that led a lawyer to further investigate his case, leading to his freedom. His father wrote a letter to a paralegal, Jena Parker. "Parker said that when she first read the letter from Brodie's father, two things stood out to her: If a deaf person had committed the crime, he would have had no gauge of how loud he was as he went through things in the house; and how did the child victim understand Brodie's instructions when his voice is often unintelligible?" I'm sure someone will manage to find offense with that quote, but it is what ultimately got him released!

Read the article here.

Sunday, September 12, 2010

Sweet Sixteen

I turned 16 on Monday, then got my license on Thursday. As great as it was having the day off of school (since my birthday also happened to fall on Labor Day), being sick put a bit of a damper on things. I went to the DPS on Thursday, since it was a Jewish holiday and I didn't want to have to miss school twice. Stood in line for 2 hours (starting at 7 AM..way too early!), and then made an appointment to take my driving test at noon. While in line, we chatted with a guy who was a year or two older than me (he was getting his license renewed) who also had hearing aids. I don't know know of his hearing background, but as far as I know he is completely oral, and if his hearing aids hadn't been visible I probably would have had no idea he had a hearing loss. We discussed whether or not to get hearing-related restrictions on my license, and he said that he didn't put anything about his hearing loss on the form when he went to get his. In the end, we told the person who was creating my license (which only flustered the poor lady further-it was her first time giving a license and it took her forever to figure out how to work everything on the computer!)

When I came back later to take the driving test, I was terrified.  All of the people who were taking the driving test had to line up in their cars in a certain spot, and the person testing would come out to you. There were about 6 of us in line, and I was 2nd. The first instructor/testing person came out, a jolly large old man who seemed quite friendly, and walked over two the first car. I thought to myself,  "Maybe it's not that bad!" Then, another person walked out and began making her way out towards my car. An audible gasp could be heard from my mother's mouth- this woman looked miserable, and I'm pretty sure if I'd been in a movie, they would have played that haunting music they play when the villain reveals herself! It didn't help that she insisted in speaking in her one-step-above-a-whisper voice. The test itself didn't last longer than 15 minutes, and I ensured that I didn't fail for "Not following directions" by repeating every single direction she gave me to verify I heard her right. I wouldn't say it was a joyride, and I wasn't quite flawless, but I passed and did well and I now have a license, so I have no complaints!

 On Friday I had my birthday part. It was a "sweets" party (get it? "Sweet Sixteen" Clever, right? ;)) and we spent 2 of the 3 hours in 2 teams "competing" by having a cake decorating competition. I was actually surprised at how artistic some of my friends are! There was no winner or prize, but it was a lot of fun.  Instead of gifts, I told my friends that I would love donations for the Dallas Hearing Foundation. We raised $300, and I know it was for a great cause! Here are some pictures:
This was a cake we ordered, we're not quite that talented at decorating. Isn't it beautiful?!
This was the table of sweets. Not all of the food was out yet, but I still think it's so pretty!
Cake decorating supplies

Team 1's cake

Team 2's Cake
Hearing is great! At the beginning of my party I began to regret having 16 already loud and hyper girls, who were also now on a sugar rush, all decorating and talking in one room, since it began to get so noisy that even my friends had  to ask for more repeats than usual. I then gestured my mom for my remote, quickly put it on the Zoom setting, and was able to hear fine for the rest of the evening!

Tuesday, September 7, 2010

FM with the N5 *EDITED*

I've found that my blog has had multiple searches about how to use the FM with the N5 processor. Currently, I use the MyLink neckloop instead of a boot (using T-coil) and the SmartLink Transmitter, both shown.

 Recently, I went to look at the Cochlear store's newest items, in search of the microphone covers (I had a mishap in putting mine on, which resulted in needing another set. Cochlear just sent me some more for free. Details in another post!). I came across an exciting discovery..

"The Euro Accessory Adaptor is designed to create a convenient interface for connecting a wireless FM receiver, such as the Phonak MLxS, to the Cochlear Nucleus CP810 Sound Processor. Wireless FM receivers allow the voice of a speaker, often times a teacher, to be transmitted wirelessly to the listener for easier listening in noise." Cost: $90

For those of you  curious of what it looks like while being worn, I found some pictures that someone posted on a Dutch CI Forum. To see more pictures and, I guess if you read Dutch, read more about it, check out
This is not me, see above link for source.
See above link for source
I was worried about it being awkward looking. I'm not sure what I think of it, but it certainly adds bulk at a bit of a strange angle. It could be much worse, though. I'd be interested in hearing any thoughts (or experiences) on using the Euro Adapter. How do you think it looks? My biggest concern is the decrease in battery life that I will more than likely experience.

*EDIT as of  9/9*: Cochlear has information posted on their website about the new Euro Adaptor, and the site says that N5 users will be able to get the adaptor for free by filling out a form (which is supposedly on the website, but I can't seem to locate it). Check it out, plus tons of other info about using the FM here. Also, Cochlear has released an improved version of their Snugfit for the N5, which is pretty much the same as that of the Freedom (except shaped to the N5), so it's no longer transparent but much easier to bend to fit your ear shape. In addition to that, they've released Compact Rechargeable Battery Covers. This is good news for the parents of younger kids who like to use the covers and the smaller rechargeables. All of the items mentioned are for sale on the Cochlear Online Store under Nucleus 5 Accessories, which can be found here

Saturday, September 4, 2010

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!

Sunday, August 29, 2010

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!

Wednesday, August 25, 2010

Guest Post by Joey of BTaC

 The following is a guest post by Joey from If you would like to write a guest post, please contact me with your idea. At this time, I am not interested in guest posts for advertising or those that are specifically about a technology that I do not/have not used. Thank you!

Our house has a nifty feature that wasn’t advertised by any real estate listing.  Twice a summer, there are fireworks we can see from the street right outside our house.  In July, we made our 5-year-old daughter, Julia, take a nap so she could stay up to watch the display.

The neighborhood kids are a nice bunch.  There are four other little girls under age 12 that play with my girl regularly.  They understand about her hearing aids and though they’re not perfect at compensating for her communication needs, they get along really well.  There is one boy, age 6, in the neighborhood.

This boy never comes out to play.  He doesn’t care for the girl dominated street or whatever.  He made a rare appearance on this evening of the fireworks. 

He wasn’t really paying attention to the show, so someone drew his attention to the fact that there was music being played.  It was far distant music that I could hardly hear myself. 

This boy walks up to my daughter, my sweet angel with her hot pink, purple, and white ear molds.  He gets right up to her and asks, “can you HEAR that music?  Can you?  Can you hear it?  It’s like doo, doo do do.”

The whole interaction took just a couple of seconds.  Julia said that she could hear it, which may well have been a lie.  The boy lost interest and went away from her.

I was left with tightness in my chest for the rest of the evening.  I had a whole fantasy sequence where I held that little boy by the shirt and told him that he will never be permitted to speak to my child again.  My palms felt sweaty and my heart was beating too fast.  Where did he get off talking to her like that?

When we were inside and Julia was in bed for the night, my husband and I talked about the incident.  We agreed that he was not being a nice kid.  He probably isn’t a nice boy.

There are a lot of boys and girls in the world that aren’t nice.  Julia will be meeting all sorts of kids this year in kindergarten.  I will be not be there to assess their intentions.  She will be alone.

Though I’m frightened for her, I’m glad too.  I can’t take it.  Julia clearly can.  And really, it’s hers to handle.  So until she comes to me with one of these stories, I really should stop worrying.
If only that were my nature.

Friday, August 20, 2010

A long way to go

A few days ago, I was at a good friend's house with a group of girls. I'm close with some of them, but there were a couple who I was friends with when I was younger but haven't talked to very much in recent years. I was discussing how I was taking my driver's test the following day (which I passed, by the way! Yeah!) and how my parents were being even more paranoid than normal, since my sister had been hit by a car the week prior. I was describing how the girl driving hit her, and the mom came out and said it was their fault, but they did not get police involved since it was a minor accident in the parking lot. I mentioned how my sister decided not to ask for money for her car damage, since she didn't feel the scratch was very noticeable, and the girl driving the car also had special needs. A few days later, the mother called saying it was my sister's fault and asked for a very large sum of money for their car repairs. As I was relaying this story,
friend-who's-grown-apart (FWGA) chimed in:

FWGA: She had "special needs"? I didn't know 'they' could drive.
Close friend: I'm pretty sure that's discrimination if you say someone can't drive because of that.
FWGA: No! Because blind people aren't allowed to drive. Neither can deaf I'm pretty sure they don't let 'them' drive.

Oy...While we've come a long way, we still have a long way to go! (And yes, I set her straight! It's just concerning that this conversation occurred right after I said I was taking my driving test.)

Thursday, August 19, 2010

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.

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.

Tuesday, August 17, 2010

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 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!

Tuesday, August 10, 2010

Input please!

Hello my dear readers,
Privacy has been on my mind a lot lately. I'm trying to decide of I should make this blog only accessible to people who have permission. This would mean that in order for you to read this blog, you would have to come out of your lurking shadows and give me your email, which you would have to type in when you want to read my blog. It would also essentially mean that no new readers could read my blog, unless they found out about it through some other way. Obviously, it would also mean more privacy for me and eliminate the worry of who is reading.  As you may have noticed, I just posted a new poll on the topic. Please give me your input, and leave me a comment if you would like to elaborate or argue your points. Don't be shy :)


Saturday, August 7, 2010

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.

Monday, August 2, 2010

Lipreading Fail: A Frightening "deaf moment"

After a long day of SAT classes and a night of getting engrossed in the latest novel I was reading, I finally fell into a deep sleep late that night. I slept soundly, dreaming of puppies and butterflies..

*shake, shake* I rubbed my eyes. Why was someone awaking my slumber at this unearthly hour of *glances at clock* 9 AM?! I rolled over and shut my eyes, only for me to see my mom pounding on my bed again, and then walking out. That was...odd. Besides the fact that this was my one day to sleep in (and for a teenager approaching the end of summer, 9 in the morning is not sleeping in), I usually get a friendlier wake-up call than that. I mean, my sister was set to have her wisdom teeth out this morning, it's not like we were planning to go out and party. I dragged myself out of bed and into the hallway, only to see my mom standing there talking on the phone.

"What was that about?!" I asked in my whining sleepy voice.

My mom began gesturing wildly, a frantic look in her eyes, all the while staying on the phone. She tried talking to me, but my lipreading skills are declining by the day, and I still wasn't fully awake. I stared at her and threw my arms up, trying to signal the fact that I was confused and had no idea watch she was trying to say. I paced back and forth as my mom stood in the doorway of my sister's room, still on the phone.

She signaled for me to put on my processors. I shook my head, unable to recall exactly where I put them as I dozed off the night before. Besides, it was too early! I was ready to jump back in the bed!

"What do you want?!" I asked, starting to get annoyed.

I was finally able to understand., I got it! I have to answer the door!" "Who's at the door?" I asked.

My mom slowly enunciated what I thought looked a lot like "Rebecca is coming."
"Hmm, that's weird." I thought to myself. Rebecca was my sister's friend. But, as far as I knew, my sister was still sound asleep from the surgery less than a couple of hours earlier. I shrugged, and went downstairs to open the door for Rebecca.

I stood at the door, looking out the window for Rebecca. As I waited impatiently, I saw an ambulance, flashing lights and all, pull up in front of our house. "Huh..I wonder what happened?" I thought to myself. They stopped at the stop sign in front of our house. I kept watching to see if they were going in the direction of any of my friends' houses. Instead,  4 paramedics came running out, up to our front door. That's when it hit me that maybe my mom hadn't said anything about Rebecca after all. I opened the door and pointed upstairs, to where my sister and mom were. The first man nodded and ran up, the others followed. Then another 2 paramedics came up, holding a stretcher.

I watched from downstairs as my sister's room quickly filled up. I tried my best to see what was going on. Most of them looked like they were just standing around. "That's good, right? I mean, when they have to do CPR there's normally people running around and screaming." I thought, trying to reassure myself. I sent my dad a text message, hoping he would pause his work to let me know if he knew what was going on. I sat on the couch. Not too long after, the paramedics casually walked downstairs and left, my mom and sister still up in the room.

I soon found out that my sister, with a completely numb mouth, tongue, and throat, had managed to get the gauze stuck in the back of her throat and began to panic. My mom panicked too, since it could block her airway, and called 911. By the time the paramedics got here, my sister apparently had managed to swallow the gauze, so all was well.

That night, I went to check on her. She called out my name. "Yes?" I asked.

"You know, those paramedics were pretty hot." she said with a smile.

Yes they were, sister. Yes they were.

Friday, July 30, 2010

Comfortable Kinds of Hearing Aids

 The following is a guest post from a hearing aid center employee. If you would like to write a guest post, write a comment or send an email to pinklam94 'at' yahoo 'dot'com (replacing at and dot with the respective symbols). I will be back to writing some posts of my own very soon, don't think I've given up on writing!- LAM
Many people will tell you that hearing aids are bulky and uncomfortable. But those people probably have an older model hearing aid or have never worn one.
The stigma of hearing aids no longer exists and there are so many styles of hearing aids today that suit different wearers’ hearing loss needs and cosmetic preferences. Here are some facts about a few hearing aid fit styles to help you determine which one you think is right for you:
Open Fit Behind the Ear – This kind features a receiver that fits into your ear canal with thin tubing that securely connects to a speaker behind your ear. Speakers are lightweight and difficult to see behind the ear, and tubing blends in with your skin tone. Models like these often have the best sound quality and some are even compatible with Bluetooth technology.
Behind the Ear – Cleaning is easy with this model, which has a curved shape that mimics the shape of your ear. It feels as discreet as it looks because it fits so closely behind the ear. But there’s no need to worry over using extra care with this kind of hearing aid because its solid structure makes it especially durable.
Comfort Styles – Function meets fashion with these models that discreetly fit partially into the ear canal without sacrificing high performance. Most are custom so that the in-the-canal part will fit as comfortably as possible.
Cosmetic Styles – These are the smallest and most difficult-to-see hearing aid options out there. They’re best for someone with an active lifestyle that can’t be bothered with a hearing aid that whistles or needs adjustment. Most are custom molded and fit completely in the ear canal, which means that others near you won’t be able to tell that you’re wearing a hearing device.
Visit a hearing aid center if you think you may be experiencing hearing loss and take advantage of a free hearing test to help determine what kind of hearing aid will best suit your needs.

Wednesday, July 21, 2010

The GED of IEP's- A Guest Post

The following is a guest blog post, as written by "Moxy", a fellow teenage girl with hearing loss. I'm sure she would greatly appreciate any comments! Are you interested in writing a guest blog post? Post a comment or email me with the topic you would like to write about, and I will get back to you. 
So, you've accepted that your child has a hearing loss. Your kid is enrolled in school, and there's talk of an IEP. What can I tell you about your IEP? Not a lot that your audiologist, teacher, or teacher of the deaf can't tell you. I'm not an expert on IEPs. I've sat in on my own IEP meeting once, which, in my opinion, was horrible. It was the first one that I was asked to attend, and I basically sat there, missing class, while teachers, my mother, a school psychologist I had never met, a hearing teacher/psychologist I had met once before, informally, sat and spoke about me as if I wasn't there. I, if you can't tell, am not a fan of IEP's.

A quick background, however, so you know where I'm coming from. I'm a hard of hearing high school student. I wear hearing aids and use an FM system in class (for those uninitiated, the FM is a wireless microphone my teacher wears like a lanyard. There are small "boots" on my hearing aids that pick up the signal. This is supposed to give me the effect of the teacher speaking directly next to me), and I enjoy long walks on the beach (Not really, the sand/ocean "white noise"/ocean spray isn't great for hearing equipment).

The IEP is what, essentially, requires that my teachers wear my FM. It also explains where I should sit in the room, what conditions might be adverse to my learning [Read: bad lighting, uncarpeted rooms, large classes, heavy facial hair/accents], and what (if anything) additional I may require [FM use, captioned media, extra time on testing (I don't get that one either)]. "BUT!" I can *almost* hear you saying, "Isn't your IEP a lifesaver? Doesn't it mean you can relax, knowing you'll have unrestricted access to communication and information, just like everything else?! What a breakthrough!?" But the IEP is not this. Often, unless a teacher knows they will be meeting with my Teacher of the Deaf, they don't read my IEP. On the first day of school this year, I had one teacher ask if "the hearing aids are all, or do you have anything else going on?" What?! My TotD-provided printout, carefully hi-lited with the needs specific to each class, determined by a conversation about this very act of explanation... didn't cover this.

However, being a fairly confident teenager in my own right, I laugh it off, say no, briefly explain my FM (I'll already turn it on when I give it to you, if you need to, you can turn it off, here's how, I can also turn it off from my hearing aids, so if you forget it's fine. Just remember to turn it back on, or, if you for some reason take it off, to put it back on, so I don't have to awkwardly/embarrassingly interrupt the class, telling you I've been lost for the last 5 minutes because you forgot), and take a seat. You seem content. You reply, after a minute, to let me know if you can do anything, whatever. It's all good.

Which is why, a week later, when I walk into the class to see the paused opening credits of a movie, I sit down and relax. In my world, everything is captioned. The TV I watch at home has those friendly black lines scrolling at the bottom of the screen. I'm still on auto-pilot, eyes flickering to the bottom of the screen. The film begins rolling, and I hear garbled noises as a heavily accented actor delivers his lines. I look to you, wondering if you've simply forgotten. You see me trying to grab your attention, and apologize, saying there aren't any captions. I nod my head, but inwardly, I'm screaming. "WHAT about the IEP?! What about the Internet, all of those script sites? What about the e-mail address for my Teacher of the Deaf  (TotD) I gave you, on the IEP recommendations sheet, who you're supposed to e-mail if the movie isn't captioned?! Was I speaking English!?" I sit, fuming for a while, trying to pick up random pieces of info. At the end of class, you assign an essay on the movie, due the next day. Ha! I think to myself.

Which is why you're surprised, the next day, when I hand nothing in. At the end of the class I approach you, reiterating everything about necessary captioning. You nod, agree, whatever.

The cycle begins.

Keeping in mind how often movies are watched at my school, this might happen twice a month. When the TotD approaches you, everything's good, I'm a good student, no, my hearing loss doesn't seem to be effecting me at all.

My parents, friends, and TotD know this to be untrue, however. You're simply resistant to my attempts to advocate, so I silently fume in your class during the rest of the semester.

Don't get me wrong, the IEP isn't evil. It can be downright helpful, but not in the ways I think it's meant to be. Something, for example, that isn't on my IEP, is group projects. I hate them. I hate them because I can be control freak-ish (that's me, overcompensating for my hearing loss. If I control the group direction, then I'll know what's going on), which leads to me doing a LOT of work. Which is OK, I will do my best for a good grade. But the IEP seems to signal to you that I'm hard of hearing. So, when I approach you, quietly, during class, and ask that our group be able to work in the hallway because with all the other groups talking, I can't hear the person sitting next to me, you allow us. We'll sit in the hallway and get stuff done. Hey! I can hear! But that IEP, yellow flag that it is, let's me ask this of you. It helps.

I had to ask myself why I wanted to write this a few times, during the process. I don't discourage anyone from getting an IEP, if it is appropriate for them. I just advise you that an IEP isn't a magical band-aid. It doesn't make hearing loss (in this situation) go away. It doesn't take it out of the equation at all. Advocacy is still very important, and if you're a teenager reading this, don't be afraid to shoot off an e-mail to your teacher, saying "Dear Mr. Teachy-mc-teacher, I can't deal when you don't do this and that. If you could do this-and-that, or perhaps hook me up with alternate whatever, I can deal. If you've got questions, feel free to hit me or my TotD up. TTYL, frustrated hoh/d student". If you're a parent of a hoh/d kid, don't be afraid to contact the teacher, and/or the totd. Trust me, your kid will thank you for it later, no matter how embarrassing it is at the time. The embarrassment might also teach some self-advocacy. And finally, if you're a teacher? Listen. It's not all your fault. Being hard of hearing/deaf (hoh/d) student is just half of the game. We need to be able to have open communication to make things work.

Quick MAJOR thank you to your fav blogger PinkLam (or MissPink, as I've seen it ;P) for letting me temporarily hijack her blog for a moment. Note that this post is not a reflection of her, or her opinions. She was kind enough to let me stick my nose in this whole hoh/d blogging :D Keep reading; I will.

Friday, July 16, 2010

Comedy, Deafness, and Political Correctness

One thing that I've increasingly noticed on the internet is the argument of political correctness. Not only in terms of names used to describe people (hearing-impaired vs. deaf vs. hard-of-hearing), but also in terms of joking- what's okay, what isn't. I do think part of it is due to the fact that over the internet it's very hard to interpret tone of voice for tongue-in-cheek or sarcastic comments.

What really struck me is how widely opinions vary. Is it ever okay to make fun of a disability? Does having the disability give you the excuse to joke about it? Are these jokes ever even funny? A month or so back I was reading about Joan Rivers's new documentary, "Joan Rivers: A Piece of Work", and it briefly touched the subject. At one of her shows, Rivers made a Helen Keller joke (which, my deafness aside, I never really found them to be particularly funny. Can't say that I'm offended by them either), and a man in the audience was outraged, yelling at her that he has a deaf child and was offended by such a joke. "The comedian tears into him, informing him her mother was deaf and howling, 'Let me tell you what comedy is about — comedy is to make everybody laugh at everything and deal with it!’" - as quoted from this site.

Most of the time, I try to not take a defensive, sensitive standpoint. More often than not, people will say things that offend people out of pure lack off knowledge, not necessarily ignorance or out of  intent to harm.I am not a big fan of stand up comedians. I do believe that it can be okay to laugh at our struggles, since they certainly aren't going to go away. Here is one joke I've heard a few times regarding hearing loss, and I do think it's funny in a cheesy humor sort of way.

A concerned husband went to the doctor to talk about his wife. He said to the doctor, “I think my wife is deaf because she never hears me the first time and always asks me to repeat things.”
“Well,” the doctor replied, “go home tonight, stand about 15 feet from her, and say something. If she doesn’t reply, move 5 feet closer and say it again. Keep doing this until we get an idea about the severity of her deafness.” The husband went home and did exactly as the doctor had instructed. He started off 15 feet from his wife in the kitchen as she was chopping some vegetables.
He said, “Honey, what’s for dinner?” He heard no response. He moved 5 feet closer and asked again. No reply. He moved 5 feet closer. Still no reply. He finally got fed up and moved right behind her, about an inch away, and asked again, “Honey, what’s for dinner?”
She replied, “For the fourth time, vegetable stew!” -Taken from Only Funny Jokes

 As I've mentioned before, I'm Jewish. Living in Texas, people from time-to-time are shocked and as pretty strange questions. Sometimes people crack a little innocent joke, and I do sometimes find them funny. I think the key is knowing where the line between offensive and hilarious lies, and not overstepping it. (For those wondering, here is a little key of the difference between amusing and stupid. Jewish guilty mother jokes=funny. Big nose jokes= can go either way. Holocaust jokes= waaay overstepping the boundary.) When it comes to serious disabilities that I am not personally affected by, I would never dare make a joke about it. I don't think it's fair to joke when I haven't lived through the day-to-day struggles of a particular disease or disability.

I'd love to hear what everyone else thinks. Is there a time and place for these jokes? Do you think people can be too sensitive, or are others just being too ignorant?

Monday, July 12, 2010

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!)

Friday, July 2, 2010

Orlando/AG Bell (1)- Wednesday, Thursday, Friday

I'm baaack! I thought you guys would like a short summary of each things we did, from a teen attendee perspective.

The convention didn't officially start until Friday, so we spent the first two days there exploring Disney. On Wednesday evening, we went to Magic Kingdom. I'm not a huge fan of rides, so we mostly marveled at the things there were to see. They also had a parade, which was pretty cool.  (I would put some pictures up, but Blogger is frustrating me and not allowing me to do so...)

On Thursday morning we went to EPCOT, which was pretty neat. I went on a couple of rides, but mostly explored the slow-moving futuristic sorts of things. We briefly went to the side with all of the different countries and cultures, but wanted to get back to the hotel soon after. The hotel provides a free shuttle that only came every hour, and we literally ran around the entire park so as not to miss it. We were sticky and sweaty and gross, but we made it! That evening I met up with my four close friends that I made from the last convention (2008, in Milwaukee).  It was amazing to be able to see them again, and we talked for hours and hours. We had planned on watching a movie together, but around 11 we decided that we probably wouldn't have time!

On Friday the teen program began, and I was looking forward to it. At the last convention, I thought the teen program was great, and the people who ran it were really on top of things. I wish I could say the same for this year, but I was honestly a bit disappointed with how they ran everything. My friends and I decided to go to the teen program a little late, since it started early and there was nothing really planned for that day. When I arrived, I was surprised to find the entire room dead silent. There were about twenty teens there, but most of them didn't know each other and the "sitters" simply sat at a table in the corner and spoke to each other. This was a stark contrast to the teen program in Milwaukee, where the sitters did everything they could to get the teens to interact with each other, and we all became friends with each other. This time it took a little while for everyone to warm up to each other, but it happened within a few hours.

Next post- Friday afternoon sessions and activities