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.