The title does *not* reference a CI failure of any sort.
Remember my freshman year?
Remember how hard I fought for accommodations? How much I struggled?
And then remember sophomore year? How I barely got any sleep? How I accepted the fact I'd just have to work harder than everyone else? How I figured if I just studied hard enough I could make up for what I missed in hearing?
And remember that one class I took for the past two years? I literally spent hours nightly slaving over the textbook reading, carefully taking notes- hoping that what had been discussed in a class of 50+ students would instead be absorbed by reading and rereading the material.
At the end of the two years, I took the national exam. It doesn't really serve much of a purpose besides the opportunity to receive college credit. Basically "testing out" of a college course. It's a culmination of all the work you've put into the class, giving you reassurance that yes, it was worth it.
I didn't think I'd done very well, but I hoped for the best. Scores came in the mail in rounds. I heard as more and more people received their letters and received outstanding scores. They never studied nearly as much as I did, so I thought maybe all my studying would pay off.
It didn't. I didn't just "not do as well I'd hoped"; my score was nauseatingly bad.
Maybe some people would shrug it off and think "better luck next time."
But I'm not like that. Instead I reflect. I overthink.
I always thought that if I worked hard enough, I could achieve anything. But maybe that's not true at all. Am I completely out of my league? If I did this miserably bad on an exam with a class of 50-something kids, how in the world can I handle competitive college classes that can be 5, even 10 times bigger, let alone years of medical school?
Have I completely overestimated myself?
Don't get me wrong, working hard has gotten me far. On the surface, I'm doing pretty well. I hear and speak, by most standards, well. Working my butt off and barely getting any sleep has allowed me to stay in the top 5% of my class (for now).
Is it even worth it? Where is this going to get me? Are my standards just set too high? If I feel so burnt out now, where am I going to be five, ten, twenty years from now? Will there ever ever be a point where I can look back and comfortably say, "it paid off."?
It just bothers me because I feel like I'm capable of so much, yet every time I try to reach my potential, I can feel the painful hands of hearing loss trying to pull me back. Actually, I can't even completely blame it on my deafness, but, more accurately, society's refusal to adapt to it.
It seems like it would be so much easier to just be average. To be satisfied at the idea of simply passing a course that's on grade level.
But for now I carry on, chin held high, slowly placing one foot in front of the other. My life is so much more than a test score.
Showing posts with label IEP. Show all posts
Showing posts with label IEP. Show all posts
Tuesday, July 19, 2011
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!
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!
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.
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.
Saturday, February 13, 2010
Preparing for Battle- High School part 3
Before having a meeting, my parents wanted to make sure we knew what our rights were, and that nothing (else) would be unfair. Oftentimes on blogs, when I see parents talk about their kids struggling (often because the kids themselves haven't been around enough kids with hearing loss, so they feel "different,") I recommend AG Bell. Join, I say. Go to a convention, it will be a tremendous help for both parents and children. It's not because I'm some crazy die-hard oralist with an agenda (and really, most of the people in it aren't either!) It's because AG Bell has been such a help through all of this- both parens of people I met who have been through it before, as well as a lawyer who belongs. For almost no pay, they've helped us tremendously and given direction when we had no clue where we were going. Not to mention the conventions are tons of fun, and if you would like to see my smiling face, then come to Orlando!
From the lawyer's perspective, he told us it would be really difficult to win any sort of lawsuit based on educational need. Apparently, there was once a very big court case similar to mine, and the school district won. Plus, we don't really want to go the legal route- it's messy, expensive, and would just waste more time. Like Kim said, they had broken the law from a civil rights perspective.Not so much for the denial of CART, but for the ridiculous evaluation and the fact they provided almost none of the previous accomodations (captions, video notes) until it was months into the school year. He also said we had a right to an independent evaluation, and to request one. We planned to go into the meeting and request it.
My audiologist was also quite angry about the report, and thought it would do some good to have a hearing test to prove that I have trouble hearing in a classroom environment. I think this was some sort of newer test- not any of that HINT stuff with annoying white noise. This test had both male and female speakers (with extrememly random sentences) and the backgroumd noise was actual people speaking, as you would find in the real world (a classroom). With my concentration solely on listening (not on comprehend/understanding, or writing things down) I made somewhere around 75%. Apparently it's a pretty difficult test and most CI users score significantly lower than that, but it was still pretty telling. Most people with average hearing score 100% on the test, without having to put so much effort into it. Don't you think it would make a huge difference if you missed a fourth of everything said in the classroom? My audiologist thought so too, and wrote a letter to the evaluators that we brought to the meeting.
Wow, I'm just dragging this out aren't I? Promise, the next post will be about the actual meeting!
From the lawyer's perspective, he told us it would be really difficult to win any sort of lawsuit based on educational need. Apparently, there was once a very big court case similar to mine, and the school district won. Plus, we don't really want to go the legal route- it's messy, expensive, and would just waste more time. Like Kim said, they had broken the law from a civil rights perspective.Not so much for the denial of CART, but for the ridiculous evaluation and the fact they provided almost none of the previous accomodations (captions, video notes) until it was months into the school year. He also said we had a right to an independent evaluation, and to request one. We planned to go into the meeting and request it.
My audiologist was also quite angry about the report, and thought it would do some good to have a hearing test to prove that I have trouble hearing in a classroom environment. I think this was some sort of newer test- not any of that HINT stuff with annoying white noise. This test had both male and female speakers (with extrememly random sentences) and the backgroumd noise was actual people speaking, as you would find in the real world (a classroom). With my concentration solely on listening (not on comprehend/understanding, or writing things down) I made somewhere around 75%. Apparently it's a pretty difficult test and most CI users score significantly lower than that, but it was still pretty telling. Most people with average hearing score 100% on the test, without having to put so much effort into it. Don't you think it would make a huge difference if you missed a fourth of everything said in the classroom? My audiologist thought so too, and wrote a letter to the evaluators that we brought to the meeting.
Wow, I'm just dragging this out aren't I? Promise, the next post will be about the actual meeting!
Saturday, February 6, 2010
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.
And, here comes the best part, which they said after stating their denial of CART,
(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...
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...
Friday, September 18, 2009
Not-So-Quick Update
Things are better!
I feel like this whole "this is great," then followed shortly by "this is terrible!" thing is getting old.. and it is. To use one of the most over-used and annoying metaphors, life is a roller coaster. And in high school that roller coaster seems to have a lot more dips and loops...
Here's the deal:
The Bad News: I'm back to square one, with no idea of what the problem is. The doctor said further testing can be done, and it's possible it could be related to stress. We'll see...
I feel like this whole "this is great," then followed shortly by "this is terrible!" thing is getting old.. and it is. To use one of the most over-used and annoying metaphors, life is a roller coaster. And in high school that roller coaster seems to have a lot more dips and loops...
Here's the deal:
- I had a conference with my mom and some important people from the school/special ed on Thursday. I went in skeptical, and came out optimistic. By the end of the meeting, I felt that everyone understood exactly what my frustrations were, in addition to having plenty of ideas to remedy the situation. If everyone follows up on their words (and in a timely manner), my days in school will be much less stressful.
- The meeting must have really gotten the ball rolling. Today, for the first time EVER this year, we watched a movie that WAS CAPTIONED! (I can hear the masses cheering and applauding at their computer screens...Yes, I was pretty darn excited too!)
- You may or may not have noticed that some of my posts have gone missing, more specifially ones that were related to school and went into great detail. I know these were some of the most interest-generating posts, and I have saved them as drafts, and may re-post them someday. These posts were not removed with the intent of hiding what I have struggled with, but because of something completely different. I have this really cool thing that allows me to see where my visitors are coming from (cities), in addition to what search words lead them to my page. I only got this because I was starting to get curious about my audience. However, upon looking at my "stats" from these past few days, I saw some things that made me feel very uncomfortable. Basically, this is a public blog, and anyone, (whether I want them to or not) can read it. I think I've said more than enough about this for you to understand what I'm hinting at, but if you would like to be further updated or have further questions on the school situation, feel free to leave a comment (and an email) and I would be more than happy to discuss it...privately. (for now, anyway)
- Remember how I wrote about my stomach bothering me waaay back? Well it never went away, and was especially bad this past couple of days. I went to the doctor and he was suspicious of gallstones. This pain has definitely added to my stress-level, and I wanted to find out NOW if I was going to have to have (yet another) surgery. So, the next day I fasted and drank more water than I thought my poor bladder could ever hold for this test.
The Bad News: I'm back to square one, with no idea of what the problem is. The doctor said further testing can be done, and it's possible it could be related to stress. We'll see...
- Here's my happy moment of the day: We had a French test yesterday. It was part written, part multiple choice, and part listening. I was absent the day before the test, but decided to take it anyway. Today, we got the grades back and got to look at the questions on the test that we missed. As we were nearing the end of going over it, someone raised their hand and asked "Did anyone make a 100 on this test?" The teacher proceeded to say that someone did, indeed, make a 100, but it's up to that person, and not to the teacher to share. At which point, someone who must have seen my test on my desk shouted out my name. Yeah, that person was me! I smiled and the whole class started cheering and clapping. I felt like a complete nerd, which I am, so I felt like a completely proud nerd.. C'mon.. how cool is it that the deaf girl makes the only hundred in the class on a French test?!
- It's Rosh Hashanah, which is the Jewish New Year. L'shana Tova to all of my fellow Jews :)
Thursday, September 17, 2009
Thursday, August 20, 2009
It's That Time of Year Again- Main Subjects
See my post on Orchestra here. This is the letter I sent to all of my teachers in my core subjects, although I changed it slightly when I sent it to each teacher. I am taking two AP (the max offered) and the rest pre-AP classes, so this year should be fun. (ha!) I wanted to make sure I covered all my bases, so the email is somewhat lengthy. After sending this email, one of my teachers wrote me back telling me that there is a meeting about me scheduled for next week. I had requested to be present in this meeting, because I've found in the past they've never gotten the important points across (hence the email). So, as you can imagine, I'm not happy to find out from her that someone already scheduled a meeting about me. I mean, why am I the last one to know?! I haven't even heard from my Itinerant teacher of the deaf (not that she does much... or that I need her to, for that matter.) I did, however, pick up and test out my FM today. It works! (well, one one ear...)
Anyway, here's the email. Again, the ***ed out stuff is private and/or irrelevant.
Hi Ms. ***,
My name is L*** M*** and I am going to be in your ** period **** class. I wanted to let you know a few of things about me so that the year will run a bit more smoothly.
I wear a device called a Cochlear Implant in each ear. Rather than hearing naturally, I wear a microphone on the outside of my head that processes noise and then sends it to the implant in my head, which is then perceived as sound. With my cochlear implants, I can hear most sounds, they just aren't as clear and sound different to me than they do to you. Without my cochlear implants on, I am profoundly deaf.
I am completely oral and do not use (or know) any sign language. When you are speaking to me or the class, please try to talk in a somewhat loud and steady voice. I read lips, so I also need to have an unobstructed, lighted view of your face. I am constantly trying to fill in the blanks of what I didn't hear, so please try not to speak too fast! I also need to sit near wherever you usually stand while you are teaching, and it is also much easier for me to understand you and see your lips if you avoid pacing around the room. Please get my attention before you start speaking, because I may not notice at first that you are talking, and then miss the beginning of what you have said. If you are answering questions from students, please repeat the question back before answering it, because I often have trouble hearing students who are in various parts of the room. For example if John were to raise his hand and ask what page the homework is on, rather than just saying "Twenty four" say something along the lines of "The homework is on page twenty four." Otherwise I would have no idea what you meant when you said "twenty four" and it wouldn't do me much good!
I have the most trouble hearing through electronics, so if we are watching a video or listening to a tape, it must have captions. If not, I need a copy of notes with any important information that I need to know that was said. Legally, I cannot be tested on any sort of audio or video. Please also try to do your best to have a written copy of any instructions you give, whether it be on the board or on a piece of paper.
It is also especially hard for me to hear in noise, so if we ever have to break into smaller groups, it is much easier if I can work with my group outside in the hall, away from all the noise. If this is not possible, maybe we could work out an arrangement so I am in a part of the room that is quieter. I will do my best to remind you of this.
The last thing I wanted to let you know is that I use an FM system to help me hear a little bit better. I don't know if you have used this type of FM before, bu basically, you just have to hang a microphone around your neck, and your voice is wirelessly transmitted to my sound processors, so that it sounds a little bit louder to me. It's fairly easy to use, but I would be more than happy to come by **** [high school] today or Friday to show you how and explain it to you. It should only take a couple of minutes, but I would rather show you ahead of time, as it can get quite hectic on the first day of school (as I'm sure you already know!) Please let me know if there is a time you would like me to come.
Let me know if you have any questions at all, whether it be now or during the year. I am very comfortable talking about my hearing loss, and no one knows what I have trouble with better than I do!
Thank you!
Anyway, here's the email. Again, the ***ed out stuff is private and/or irrelevant.
Hi Ms. ***,
My name is L*** M*** and I am going to be in your ** period **** class. I wanted to let you know a few of things about me so that the year will run a bit more smoothly.
I wear a device called a Cochlear Implant in each ear. Rather than hearing naturally, I wear a microphone on the outside of my head that processes noise and then sends it to the implant in my head, which is then perceived as sound. With my cochlear implants, I can hear most sounds, they just aren't as clear and sound different to me than they do to you. Without my cochlear implants on, I am profoundly deaf.
I am completely oral and do not use (or know) any sign language. When you are speaking to me or the class, please try to talk in a somewhat loud and steady voice. I read lips, so I also need to have an unobstructed, lighted view of your face. I am constantly trying to fill in the blanks of what I didn't hear, so please try not to speak too fast! I also need to sit near wherever you usually stand while you are teaching, and it is also much easier for me to understand you and see your lips if you avoid pacing around the room. Please get my attention before you start speaking, because I may not notice at first that you are talking, and then miss the beginning of what you have said. If you are answering questions from students, please repeat the question back before answering it, because I often have trouble hearing students who are in various parts of the room. For example if John were to raise his hand and ask what page the homework is on, rather than just saying "Twenty four" say something along the lines of "The homework is on page twenty four." Otherwise I would have no idea what you meant when you said "twenty four" and it wouldn't do me much good!
I have the most trouble hearing through electronics, so if we are watching a video or listening to a tape, it must have captions. If not, I need a copy of notes with any important information that I need to know that was said. Legally, I cannot be tested on any sort of audio or video. Please also try to do your best to have a written copy of any instructions you give, whether it be on the board or on a piece of paper.
It is also especially hard for me to hear in noise, so if we ever have to break into smaller groups, it is much easier if I can work with my group outside in the hall, away from all the noise. If this is not possible, maybe we could work out an arrangement so I am in a part of the room that is quieter. I will do my best to remind you of this.
The last thing I wanted to let you know is that I use an FM system to help me hear a little bit better. I don't know if you have used this type of FM before, bu basically, you just have to hang a microphone around your neck, and your voice is wirelessly transmitted to my sound processors, so that it sounds a little bit louder to me. It's fairly easy to use, but I would be more than happy to come by **** [high school] today or Friday to show you how and explain it to you. It should only take a couple of minutes, but I would rather show you ahead of time, as it can get quite hectic on the first day of school (as I'm sure you already know!) Please let me know if there is a time you would like me to come.
Let me know if you have any questions at all, whether it be now or during the year. I am very comfortable talking about my hearing loss, and no one knows what I have trouble with better than I do!
Thank you!
Saturday, July 18, 2009
No Two Ears Alike-Part 3: Progress and a Problem
This is a series of "flashback" blog posts on my journey through going bilateral. To read the other posts in this series, click on the following links.
Part One
Part Two
I had purposely scheduled my activation for a Friday so I would have the weekend to adjust to hearing with two ears. And that I did. By Saturday night, I was listening to my iPod with my left ear alone and even enjoying it. My speech recognition seemed to be improving by the hour. Just a day after getting turned on I went to The Listening Room and breezed through all the levels of the speech discrimination activities, and the highest one, the expert/olympic module, was/is still under development, probably would have been more challenging. (My surgery was just a few weeks too early to receive Sound and Way Beyond.) By the end of the weekend, I had gone through all 8 of the programs given to me (each one louder than the next). It seemed that I was one of those people I had been jealous of when I got my first implant, those who seem to do well instantly.
Since I had gone through all the programs, I went in for another mapping four days after my new side was turned on. We quickly got through the mapping, and then my audiologist was eager to put me in the soundbooth. I listened for the tones, then she did HINT sentences. I surprised myself with the amount I was able to understand. Either I understood the sentences or I didn't. The ones I understood I got entirely right, but the ones I had trouble with I couldn't understand a single word of. The audiologist finished the HINT test and I started to get out of my chair.
"Wait," she said "I'm going to get ready greedy and test you on words!"
"Are you kidding me?!" I asked.
For the uninitiated, this is probably one of the most stressful hearing tests if you don't have really good hearing. I swear I can feel the anxiety building up as the creepy man voice says, "Ready, duck. Ready, bomb." I'm not sure what the point of saying "ready" is, since I don't think there is anyway to be ready! The man sounds like he's torn between overexcitement and nervousness, and I'm not sure if the speed is adjustable but he seems to go mighty fast! That voice haunts me...
While doing the test I was convinced I was getting every single one wrong. I have a close relationship with my audiologist and we get along great, so I figured she would be understanding. I looked at her through the window with a "save me!" look and she just smiled and nodded at me to keep going. Fine then!
Finally, the testing was over. I went into a long rant to my audiologist about how sure I was that I had failed miserably. She refused to say anything until we got into her office. "Do you know how amazing these results are?!" she asked. Clearly, I did not. Then she showed them to me...
Keep in mind these are my results FOUR DAYS after my CI was activated. Not a long time at all. I also included my right ear's (with two years of electrical listening experience) audiogram for comparison.
Part One
Part Two
I had purposely scheduled my activation for a Friday so I would have the weekend to adjust to hearing with two ears. And that I did. By Saturday night, I was listening to my iPod with my left ear alone and even enjoying it. My speech recognition seemed to be improving by the hour. Just a day after getting turned on I went to The Listening Room and breezed through all the levels of the speech discrimination activities, and the highest one, the expert/olympic module, was/is still under development, probably would have been more challenging. (My surgery was just a few weeks too early to receive Sound and Way Beyond.) By the end of the weekend, I had gone through all 8 of the programs given to me (each one louder than the next). It seemed that I was one of those people I had been jealous of when I got my first implant, those who seem to do well instantly.
Since I had gone through all the programs, I went in for another mapping four days after my new side was turned on. We quickly got through the mapping, and then my audiologist was eager to put me in the soundbooth. I listened for the tones, then she did HINT sentences. I surprised myself with the amount I was able to understand. Either I understood the sentences or I didn't. The ones I understood I got entirely right, but the ones I had trouble with I couldn't understand a single word of. The audiologist finished the HINT test and I started to get out of my chair.
"Wait," she said "I'm going to get ready greedy and test you on words!"
"Are you kidding me?!" I asked.
For the uninitiated, this is probably one of the most stressful hearing tests if you don't have really good hearing. I swear I can feel the anxiety building up as the creepy man voice says, "Ready, duck. Ready, bomb." I'm not sure what the point of saying "ready" is, since I don't think there is anyway to be ready! The man sounds like he's torn between overexcitement and nervousness, and I'm not sure if the speed is adjustable but he seems to go mighty fast! That voice haunts me...
While doing the test I was convinced I was getting every single one wrong. I have a close relationship with my audiologist and we get along great, so I figured she would be understanding. I looked at her through the window with a "save me!" look and she just smiled and nodded at me to keep going. Fine then!
Finally, the testing was over. I went into a long rant to my audiologist about how sure I was that I had failed miserably. She refused to say anything until we got into her office. "Do you know how amazing these results are?!" she asked. Clearly, I did not. Then she showed them to me...
Keep in mind these are my results FOUR DAYS after my CI was activated. Not a long time at all. I also included my right ear's (with two years of electrical listening experience) audiogram for comparison.
Red is right (old), blue is left (new). That's 5-2o dB across the board for my new side alone! And 0-15 dB for my old side is pretty awesome too!
And here is my speech understanding scores for my left ear alone, once again, I repeat, FOUR DAYS LATER!
HINT- 83%
CNC- 60%
Pure shock! I was already waaay surpassing my old hearing tests.
The next few days I had a little more skip in my step and my hearing only kept getting better. I was so happy to know that I had made the "right" choice and was feeling a lot more confident in more difficult hearing situations. Actually happy doesn't even begin to cover it. I was ECSTATIC. I was in the "honeymoon phase" of having two implants.
In a perfect world, the story would end there. I would go on to say that now I have super sonic amazing hearing and blah, blah ,blah. (okay, yes, I do think my hearing is pretty amazing now, but that is not the point!)
Not too long after that hearing test, I kept feeling a sharp pain along the very top of my scar/ear on my head. It felt like an awful pinching. I tried to ignore it at first, chalking it up to healing. The pain started getting worse and more frequent. "My ear is probably just not used to carrying so much weight on it." I told myself. That had to be why. Then it got to the point where by the afternoon, I had to take my processor off because the pain was so intense. There were days where I had to remove it at school and keep the processor in my purse, because as much as I loved hearing with two ears, the pain was becoming unbearable.
My mom had said from the beginning we should book an appointment with my surgeon. I refused and insisted that it would get better. She begged me to go. Finally I gave in out of pure misery.
My appointment was on a school day afternoon immediately following the Worst IEP Meeting of My Life. Okay, it was the only IEP meeting I'd even been to, but it was an emotionally traumatic experience. And as I've said before, I'm not a crazy-emotional person. I'm not going to go into many details because I have no way of knowing who reads this blog. (which is also why I don't use my real name, for those of you who were wondering.) Let me just say that the person who was going to be in charge of coordinating my services and was supposed to help me for the next two years of high school just didn't "get it". She seemed like she was out to get me, and I cried until I thought I had no more tears left. Then came the appointment.
My mom was parking the car, so I went into my surgeon's office on my own. It was the one time they took me immediately. I went in and my surgeon came to the room I was in pretty quickly. I described the pain to him and he looked. He asked me to point to exactly where the pain was. He then got out some kind of giant magnifying thing and put it to the side of my head. After looking for what seemed like forever, he looked at me and told me that there were hairs growing inside of the incision that were preventing it from healing. He told me he would use his instruments and go inside the wound to remove them, and it may hurt a little. Great, just what I needed.
He went in and began and the pain was awful. It felt like he was pinching me as hard as he could, and then some. Suddenly it stopped, and I turned my head to look at him. "I just need to get another instrument so I can go in a little bit deeper." AHHH!
Could this day get any worse?
By the time he finished, my mom arrived in time for a question-and-answer session with my surgeon. He went into more detail this time, explaining that because of these hairs growing at the top of my incision, there was actually a small hole forming since it was preventing the scar from healing. Ew. I knew having crazy curly hair would catch up with me someday! My surgeon told me that what he did should solve the problem. I asked if it could happen again. "It can, but it's unlikely," was his response.
Following that appointment I had another appointment with my audiologist because my new side would frequently "cut out" where it would briefly go silent, then I would resume hearing as normal. We tried a couple of things and were hopeful that it solved the problem.
In my dreams!
By the time I got home it was late, and I was exhausted. All I wanted to do was have myself a little pity-party. My parents were pretty understanding, and allowed to take a rare "day off" of school to relax. I'd need it.
To be continued, once again. Up next in part 4: Frustrations.
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