Support David's Project

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

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

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

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

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

Thanks guys :)

Perlman

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

Why, to see the famous Itzhak Perlman!

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

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

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

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

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

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

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

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

live and learn

The following was a text message sent out to a few friends shortly after I returned from practicing driving with my dad. This was only the 2nd time I've driven on the road.

Note to self: When driving, don't get into the wrong lane as you're turning onto a street. This may result in an onslaught of cars honking as they try to brake before hitting you head-on, as well as a screaming and terrified father. 

Yes, we're just fine(a collision did not occur!), although I've never experienced an adrenaline rush quite like that one. Don't think I'll be making that mistake again..

Unexpected Twist

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

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

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

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

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

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

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

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

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

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

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

(pause music at the bottom of the page)


Not so fast..

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

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

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

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

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

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

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..

White Fluff

My yard is filled with inches of white, fluffy snow. For those of you that don't know, I live in Texas.

The place where it's flat. and hot. And it's weird if you don't say "y'all" in everyday conversations.

I woke up, and the grass was covered in a thin layer of snow. It hasn't stopped, and the past record of 1" of snow has been shattered. It's at least 4" and is predicted to get up to 7". How crazy is that!?

We still had to go to school. Every single other school district in the area closed. However, ours is infamous for having really bad judgement when it comes to bad weather days. It's supposed to completely freeze over tonight. Thankfully, not long after getting home, it was announced that school would be cancelled for tomorrow (Friday) giving us a 4 day weekend, since we already have Monday off. Awesome! My friends and I have been planning for this all week, and if the roads aren't too bad to drive on, we'll be seeing Valentine's Day tomorrow. I need this long weekend!

Pictures to come :)

Oh, and on the CI front..
I picked the brown processors. I sent in my backup brown Freedoms (I was very happy that we only had to send in the processors, not the controllers) and they should be shipping the N5s to my audiologist for mapping shortly. We were able to get some insurance coverage, with help from my center's insurance department. However, we're yet to be given an actual number on how much we'll have to pay out of pocket. Hopefully it will be a pleasant surprise, and not a shock!

Has anyone used the Bilateral Personal Audio Cable?

I ordered one, and received it a week or so ago. The weird thing was, one side (that you plug into your processor) was a good 3 inches longer than the other. I'm yet to understand the logic in that, and it's not like the length is adjustable. We called Cochlear, and they sent us another one to make sure the one we got wasn't defective. Nope, apparently they are intentionally making one side longer than the other...

So, if anyone has any idea why this is the case, feel free to share. And don't worry, I'll be posting more about the CART/School situation soon!

School/CART Stuff- Part 2

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

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

Okay, then...

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

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

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

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

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

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

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

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

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

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

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