The Difference-Part 3

Part 1
Part 2

At that moment, I realized I had a conscious decision to make. I could get defensive, cry, storm out and say they weren't legally allowed to ask me about my hearing loss (were they? I'm still not even sure?), or I could put my advocacy skills to good use and actually educate them. So I put on a composed front and reassured them that everything would be fine, carefully answering each of their questions. I should note that they were really friendly and seemed to actually care and were genuinely concerned, but it was still a little overwhelming.They barraged  me with questions that included (but were not limited to):

• How will you hear in (various listening situations described)? 
• There's 2 teachers... one microphone. How will that work?
• What if you and the other girl with the microphone are in the same class? Will it still work?
• Will you tell us if you can't hear?

Apparently they had a really bad experience the one time they had accepted a deaf/hard-of-hearing student. My understanding is that she was oral but relied on lip/speech-reading quite a bit to comprehend what was being said. All year, the girl would stand in the back whenever they were teaching how to do skills for the CNA exam taken during the year as part of the class. The girl was going through a bad time in her life or something and refused to look at the teachers to lipread them. And of course, all year the girl never came to the teachers to let them know she was struggling, so they never really had any inclination. Their main concern was that I might be struggling to hear, and they just wanted to be sure I would tell them if at any point there was an issue so they could help me.

I could see where they were coming from, and it's certainly easy to think one individual is representative of an entire group, especially since she's the only one in the group of students with deafness they had met! It's a shame that it was a bad experience, but they were open enough to see that I wouldn't be like that. Although I felt I had handled the situation well and responded confidently, I was still extremely worried that I wouldn't be accepted because they would view the FM and hearing loss as an extra burden. As I have posted previously, I was ultimately accepted. The other girl with cochlear implants was accepted as well. At an informational meeting with all of the students, the teachers came up to me to be sure I heard everything okay. They really seem comfortable with the whole idea and I can tell that they care and want me to succeed. I brought up the whole stethoscope issue and mentioned that it was not yet resolved, but we were working to find a solution. They assured me that even if I can't get it to work, they will figure something out and work around it if we have to. Of course I would like to ultimately be able to use the stethoscope, especially if I end up following my current dream of becoming a doctor, but I am really glad to hear they're willing to work with me if it's not possible.

I am really excited for the class. I really do think it will be a great experience. Anyway, the main reason I shared this was to demonstrate how positively they reacted. They openly voiced their concerns and listened when I gave my input, and I do feel that they will work with, rather than against me to solve any problems that might spark up along the way. In the next few posts I will share another experience, but it's not a positive one. Actually, I'm still kind of in the "what should I do?" state. I have received quite a bit of advice and I am trying to figure out my next step.

Anyway.. stay tuned for part 4!

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.

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!

Too Smart for Assistance

I had corresponded with Sara about my school situation a while back, and she reminded me that I left out a bit of the evaluation. Here's her comment.

"You should post the rest of this story. The insane part is that they don't think you "need" CART or anything because your grades are so good. They don't get that you can be SMART and still STRUGGLE.

I was in the same boat, but I sadly don't have any advice since we never got anywhere with getting me CART until I was taking graduate classes..."

Which was another aspect of it. I'm pretty sure they took one look at my grades, and scoffed at the idea of giving me services. A large part of the evaluation was weighted on my grades and test scores (apparently the words "commended" and "superior" don't exactly scream "Needs help!") My grades certainly aren't/weren't bad, although they'd be better if I actually learned a thing or two in class. I might actually get some sleep with CART, instead of having to learn what I miss on my own. Maybe I wouldn't be so frustrated, maybe I could actually relax, if I'm just given equal access to material.


Full disclosure- we got our class rank for our time in high school so far. I'm told that in most places GPA and class rank are not that big of a deal. Well here, it's kind of a huge deal. After each test, people actually sit there and calculate out their GPAs. The pressure to do well and rank better than others is enormous. I'd rather be measured against my own success and improvements than that of everyone else. Anyway, I wasn't planning on looking at mine. After half of my friends ended up being ranked in the top 10 (not the top 10 percent. The top 10 people. Out of 820. That's like...insane.) I went home and looked. I'm in the top 6%, which is nothing to sneeze at. Could be better, but it's not like kid swith hearing loss are held to much of a standard at my school anyway.

I'm going to start a new post about the meeting, since this one's getting long. Keep this in mind as you read the conversation that goes on between me and the others at the meeting..

What my mom has done for me (This is for the parents...)

I received the following very sweet comment on my blog on Thursday.

"I've been reading your blog for a couple of months now. I must say that you are both a very good and a very entertaining writer. So if that medical career doesn't work out for you(which I'm sure it will), I think writing might be a good, albeit not very well paying, backup.


Anyway, I just want to thank you for your blog. It has really helped me cope during the past couple of months. While I am a long way from 15 (41 to be exact), I read your blog because one of my daughters (she's five) was just diagnosed with a mild unilateral hearing loss. Currently, she still has tons of usable hearing - her loss is at 35 db on the 2000 and 4000 Hz frequencies in her right ear, with the two lower speech frequencies still testing at 10 db. Her left ear tested at 10 db across all speech frequencies. So I feel fortunate that she still has so much hearing, and I hope and pray that her hearing remains stable.

But as you know, that's pretty hard to predict even with all of the anxiety-inducing testing that accompanies a SNHL diagnosis. So your blog has shown me that no matter what happens - even if she loses most of her hearing and will require CIs, she will still be able to succeed at school, have lots of friends, and have great aspirations like becoming a doctor! So thank you for that - it means a lot to a scared mom. I would also appreciate any advice you can give me on how your mom has helped you over the years cope with your hearing loss aside from just being a great mom and advocate for you. I'm new to this, and I appreciate any advice I can get.

I'm going to keep reading your blog - I learn a lot about hearing loss issues, and it's just wonderful to get a peak into the psyche of a 15-year-old girl who loves her life and looks forward to a great future while dealing with hearing loss, CIs, and the trials of being a teenager in general.


All the best.
Rebecca"

First of all, thanks Rebecca!
It's these kind of comments that I really appreciate, and they make me want to keep writing. So, Rebecca, (and all you other parents) this is what my parents have done for me that  believed has helped me immensely.
 
Teach by example
 A huge part of having a hearing loss is learning to be an advocate for yourself. When I was younger (toddler age to early elementary) I was painfully shy. I never felt comfortable explaining my hearing loss or my needs to people. My mom, on the other hand, was always fiercely determined to make sure I was given equal access to everything we did in school and elsewhere. She would always explain my needs and equipment to all of my teachers, from the very day I started wearing hearing aids. While I wouldn't say a word, my mom would always make sure I was there when she had this conversation. She'd tell me that she wouldn't always be there to advocate for me, and that if I didn't make my need important, no one else would either. I listened closely to what she would say and how she would explain things, and now, when I am explaining my hearing loss to people I use a very similar dialogue that I'd heard my mom give my teachers year after year.
 
Don't lower your expectations or place restrictions
My parents have always told me that as long as I did my best, they would be happy with me. However, they did not have any lower expectations for me than my older (hearing) sister, and never really let me use my hearing loss as a crutch or excuse to not do well on something. (Unless, of course, it was due to me not hearing the information, which would bring me back to #1.)  They also never told me I couldn't do anything because I couldn't hear. For example, when I started middle school, we had to choose whether to do band, choir, or orchestra. I changed my mind three times (I can't imagine how different things would be if I had chosen choir!), but my hearing loss played a minimal factor in this decision. I was never once told by my mom, "Maybe you shouldn't take the violin-what if you can't hear it?" The same was true when I had to decide when to take a foreign language (starting in 7th grade or 9th grade) and what language to take. I chose to take French, purely because I liked the way it sounded. I was never told it might be better if I waited two years so I could take ASL instead.
 
Open the lines of communication
One thing my mom always told me was not to be afraid to tell her anything. Whether it be a broken FM, a teacher who wasn't quite doing what she was supposed to, or a kid who just didn't "get it", I knew I could talk to my mom about it. Not only that, I knew she would help the situation. One important, I must say, is that if your child comes to you and says that her FM has been broken for the past two weeks, don't yell at her for waiting so long to tell someone. I had teachers who did this, and I would always think they'd be mad at me, so I just wouldn't tell them at all. Instead, thank your child for telling you, while nicely encouraging her to tell you sooner the next time it happens.
 
Follow your child's lead
When I was about five, my mom asked me if I wanted to go to some program and meet other kids who were "like me" and also had a hearing loss. I cried and cried, saying that I wasn't different than anyone else and did not want to go. My mom never pushed the issue, and I was perfectly content with not being with other who had hearing loss for years. As I got older and into my teen years, I became more aware frustrated with certain issues that I felt like my hearing peers couldn't relate to. I began asking to go to conventions, camps, and programs for other teens with hearing loss. While these weren't always the most fun or interesting things for my mom to attend, she understood that I needed to interact with others who could relate to me hearing- wise- but only when the time was right for me.
 
I hope this helps some of y'all out there. I will also ask my mom if she has any advice that she'd like to share.
 
Thanks Mom, for all you've done over the years!

Survivin' and Thrivin'

I've survived my first week of high school.

And I actually sort of liked it. I'm one of those weird people who needs (and loves) routine. The first day was relatively uneventful. I didn't get lost, and was able to get to my classes on time. I feel really lucky, things have worked out quite well (so far.) My schedule is GREAT (well, now that I've changed it twice). My classes are pretty close to each other, I have at least one good friend in each class, and I've never been late (or even almost late). I was originally assigned a bottom locker, but I didn't want to chance hitting my head and breaking an implant, so I requested to get it moved to a top locker. My new locker is on the opposite side of the school, and I was especially concerned because it didn't seem to be near any of my classes. It is actually somewhat close to two of my classes, which is pretty good when you consider that most people are only able to make it to their lockers once a day. The best part is, I got one of the sophomore lockers. While it's not any different than the freshman lockers, the people around my locker are SO nice. Last year, the kid whose locker was next to mine smelled questionably like smoke (I'm not going to jump to any conclusions... but this deaf girl has a pretty acute nose!) and was constantly cussing at me to get out of his way. The snooty girl who had a locker under mine always had her posse standing standing in front of my locker who REFUSED. TO MOVE. Passing periods were somewhat traumatic last year.So, it was such a nice surprise for people to instantly move out of my way if they see I'm trying to access my locker! And they actually SMILE! A little respect goes a long way.

Hearing-wise, things are great! At lunch, thanks to now being bilateral, I am able to follow most of the conversation with ease! It also makes it much easier to hear in the hallways. The FM is a HUGE help in my classes (I don't use it in the cafeteria because of spills and such), especially the larger ones where we get into groups often. One of my classes is a two-year class for those in the gifted program that is a mix of History, Humanities, and English. Since it's two years, there are also sophmores in my class and I get an AP History credit in addition to that an Honors English credit, which is pretty good. It's known for being really difficult, but also for being a lot of fun and the teachers are awesome. Apparently I'm in the "small" class (a mere 40 students!) On the first day, one of the teachers took a minute to quickly explain what the FM was, how it helped me, and that any time someone was speaking and I needed to hear it, they needed to speak into it. We then had to go around the room and tell things about the person sitting next to us, and the FM was passed to each person in the classroom before they could start speaking. This set a great precedent for the rest of the year, and already we have gotten into multiple groups and it has made it SO much easier on me. I am so grateful that my teacher did this, and he said it pretty eloquently and didn't make it seem like too big of a deal. Another thing that helped is the actual design of the FM. The SmartLink vaguely resembles a cellphone/TV remote/ iPod and doesn't seem quite as fragile as the Campus FM did. Everyone is comfortable just holding it up to their mouths like a microphone.

The second day I did have a problem where the FM died halfway through the day, even though it had been charging all night. I noticed a big difference when it wasn't working. The FM I am using is a temporary (and sort of old) loaner, and I will be getting a brand new SmartLink as soon as the order arrives. However,  on Wednesday I was given a backup SmartLink to use in case the other one dies again. It hasn't, and now I have two temporary FMs to keep up wit1h I do still get a little bit of static, but not enough to make me not want to use it. I am going to trial using the FM in my right ear one more time. I don't think the results will be any different, but we'll see

I haven't had too much homework, but I'm apparently taking 2 of the 3 most difficult classes at my school, so I guess that won't last long.

Well, that's all I've got to tell! This first week has been really great, and I hope the rest of the year is the same.

It's That Time of Year Again- Orchestra

Every year (okay, well I just started doing it last year, so for the past two years) I have written all of my teachers an email letting them know a little bit about myself, my hearing loss, and my implants so that they're not completely clueless on the first day. This year I wrote three different emails- one for orchestra, one for my core classes, and I'm going to write one for French soon. I am going to post these in case anyone wanted an idea of what I write, or if you wanted to write a similar letter yourself. So here is the letter I wrote to my Orchestra teacher.

**Some information is **ed out because it is private and/or irrelevant.


Hi Mr. ******,
My name Is L**** M**** and I'm going to be in your first period Orchestra class. I know you have taught me a few times at ***[my middle school], but I just wanted to let you know some things about me to make the year run a little more smoothly. I wear devices called cochlear implants in each ear, and without them on I am profoundly deaf. Rather than having thousands of little hair cell to hear all the different frequencies, I hear an array of 22 electrodes implanted inside of my head. With my implants on, I can hear most sounds, but they sound different to me than they would to someone with natural hearing. Because of this, it can be hard for me to tune my violin, and I may not always hear the more subtle differences in pitch when playing (or listening) to music. I am hoping this will not pose much of a problem, but if it does I will let you know you know and maybe we can figure out a time outside of class for you to help me with whatever I am having difficulty with. My hearing loss has not posed many issues in the past, so, again, I hope it is not too big of a deal in orchestra.

When you speak to me or the class, make sure you speak in a steady and somewhat loud voice so that I can understand you. I also read lips, so I need an unobstructed view of your face and mouth when you are talking. To help me hear a little bit better, I also use a device called an FM system. It's fairly easy to use, and you basically just have to hang the microphone around your neck. I don't know if you have used this type of FM before, but if not I would be more than happy to come by **** [my high school] today or Friday to explain everything. It shouldn't take more than a couple of minutes, but it can be pretty hectic on the first day (as I'm sure you know!) and it would be easier for me to show you how to use it ahead of time, if that's possible.

The last I wanted to let you know is that if we ever watch some kind of video in class with important information, it must be captioned for me to understand what is being said. If it does not have captions, I will need you to give me a copy of notes with any information in the video that I need to know.

Thank you, and please let me know if you would like me to come explain the FM!