Showing posts with label OI hard of hearing. Show all posts

Do students with a hearing-loss still use F.M. systems in classes? Or is there an app for that now these days? I am only half-kidding with that remark!

For those who may not be familiar with it, this is essentially how an F.M. system works: There is a transmitter and a receiver. On the receiving end is the student who usually wears a little add-on piece that attaches to the hearing-aid. On the transmitter end is a device that can can resemble a microphone and is either clipped onto the teacher, or is placed near the area where people are talking.
Some people may be wondering, well if you have a hearing-aid isn't that enough? Ultimately what is considered to be 'enough' will depend on the student's hearing-loss. For me it wasn't enough because in a classroom setting there are chairs squeaking against tile floors, there are lights humming, radiators blasting, pencil sharpeners churning, lockers slamming, and of course -- other students making their own thousands of noises! (It's really shocking how much noise one 7 year old can make if you give her a pencil, never mind a classroom of 21 others!) A hearing-aid will pick-up on all of these sounds and it goes into the student's ear; so by the time the teacher speaks, his or her voice may be all but drowned out or muffled at best.

With the added use of an F.M. system the voice(s) that need to be most 'focused' on is then better able to be funneled directly to the student via the transmitter. But of course when you give a child any piece of technology or adaptive equipment... in the eyes of a child/student its uses can transmit much much more than just the voice of a teacher, or that group discussion. Here are a few things to NOT do from my own wonderful life experience:

1. Don't leave it in the bathroom. 
In middle school was the time when I first experienced classroom changes. For each subject we had we would have to go to a different classroom, and during that 4 or 5 min transition girls would gab in the bathroom together. I was, of course, barely responsible enough to remember my own homework so giving me the responsibility of taking the microphone from one teacher to the next was a lot. Often I would absentmindedly leave the microphone on the sink in the girls bathroom and then go off to Social Studies class, then suddenly be terribly embarrassed when I heard a toilet *swoosh, flush*

2. Don't ask your teacher about that private conversation.
A common happening with the F.M. system is that it forgets to be turned off. I can't even begin to tell you how many private conversations I accidentally was 'looped into' because my teacher forgot to turn it off, or take off the microphone. Does she really think Stephen peed his pants? Does he really think that Megan's mother is the most annoying ever? Does the lunch lady really despise watching the classroom? Was the bus driver really smoking on the playground? Avoid repeating these stories if you want to avoid awkward moments... for everyone involved.

3. Don't say "said" when the teacher says "Repeat what I said." 
Unless of course you have a teacher who has any sense of humor! I may have mentioned this before but paying-attention is not my greatest strength.. which of course doesn't really help the whole hard-of-hearing-student bit. Often teachers weren't sure if I had just not heard what they were saying, or maybe the F.M. system was malfunctioning, or maybe ...I was just spacing out again and chatting with my friends. I even had lots of crafty teachers who had caught on to my ability to lipread, so to test the F.M. system functioning they would turn away and whisper quietly into the mic so only I could hear, "Sandy if you hear this and if you're paying attention you can have a gumdrop from my desk.." Then they would turn back to the class and call on me "Sandy, repeat what I just said." And 7 times out of 10 I was probably not paying attention and would guiltily say... "...said?" 

"Wait really? You're deaf?"
"I'm not deaf, I have a hearing-loss. I don't like wearing my hearing-aids though."
"Wow I honestly had no idea."
"I can hear a little but I mostly depend on lip reading."
"Ohhh... that explains a lot. Well geez I'm sorry that I'm always mumbling!"


My immediate thought is always: please don't be sorry, I'm the one who doesn't ever tell anyone about my dependency on lip-reading! Usually the conversation goes something like that. Then the cat is out of the bag, the invisible elephant is dealt with, and another person knows that I have a hearing-loss.

Some of my readers may already know about my hearing-loss because I've written about it every now and then. But for most of the other people I interact with in life, they don't know. Maybe it's because I've adapted well to my hearing-loss so that many who speak to me wouldn't know unless I said something, but lately I have had some other thoughts about what it means to 'adapt' to your disability.

I am fairly confident about the way I have adapted to my physical mobility issues. It also helps that my physical disability is visibly obvious through my wheelchair - people adapt to me because they recognize that the wheelchair requires accommodations. I have also adapted to my wheelchair by making sure that my mobility device doesn't overtake my identity as a person.
However, when it comes to my hearing-loss things get a bit trickier. It's not visibly apparent that I have a hearing-loss...admittedly because I don't wear my hearing-aids (but even if I did it might not be that obvious). Since most people don't know from looking at me, or from speaking to me for a few minutes that I have a hearing-loss, it doesn't cross their mind that they need to be making any accommodations for me. As a result I am the one who is usually adapting to them. I notice the way they speak, the way their mouth moves, I pick up on things like lisps and accents, I learn their pace of speech if it's rapid or slow; I also pay attention to what figures of speech they frequently use, what their face looks like when they're about to sneeze vs just about to start a new sentence, or if they have a tendency to turn away just as their sentences are finished.

These are all observations that I collect unconsciously. But each detail helps me to better 'hear' folks in a way that makes them most audible to me.

Thanks to years and years of speech therapy all throughout my schooling I am used to figuring out how to 'hear' people. And now that I don't get any speech therapy services I'm still learning, mostly on my own. That learning could be made a lot easier if I were just better at letting people know about my hearing-loss. The truth is I usually wait until someone tells me "Sandy I've been screaming at you for the past 5 minutes... why are you ignoring me?" Or someone will say "have you heard a word I just said, because you're being kind of rude.." Adapting to a disability doesn't mean that you wait until it's visibly or painfully obvious that something needs to be changed. Adaptation also shouldn't just be limited to one person doing all the work; it requires communication on all parties in order to actually be effective.

Well now that I know that... I just need to figure out a way to put it all into play. Here we go!

"Sandy do you want to tell your teachers some things that would help you hear better?" I think I was in the sixth or seventh grade. My speech therapist that I'd been working with since the first grade had prepped me for this part of the conversation. It was early in the school year and we were gathered around a table going over my IEP plan.


In the beginning my speech therapist and I worked on pronouncing my own name. The "S" at the beginning of "Sandy" was pretty much silent to me until I was about 8 or so. "Hi, my name is Thandy" is how I would introduce myself to others as a kid. We also worked on endings of words that had a "t", "-ed", "-s" or the one I hated most: "-its." She helped me learn how to carry my sentences all the way through when I spoke aloud, reminding me to not drop off at the end, and we worked on my lisp (a word I had trouble pronouncing until well into high school); she taught me about adverbs, and compound words; we practiced lip reading, and ASL. I didn't consider her to be just my speech therapist, she taught me language and how it can be used, how it benefits all of us, and all of its little tricks and secrets. But the most important thing I learned from Mrs. B was how to advocate for myself.

I know that my hearing-loss isn't something that I touch upon much in this blog, but its something that O.I. affects and also, of course, affects my day-to-day life. In school I was usually not only the only one in a wheelchair, but also the only kid with a hearing-impairment (at least that I knew of). I wore hearing-aids and an FM system in school beginning with first grade till the 12th grade, and even today I will OCCASIONALLY wear one hearing-aid. (It depends on my mood, do I want to listen to the ENTIRE world today?) Having a hearing-impairment can negatively influence a student's learning experience in very obvious ways, but just as with any other disability learning to work WITH the impairment is the key to success. I think that my weekly sessions with my speech therapist, and our focus on language.. actually had a lot to do with my fluency and comfort with the English language in general. It's one of those old lessons in practice makes perfect, but in this case it helped that the student loves the subject of English and writing to begin with.
Mrs. B was the rare teacher who was able to seamlessly show her student how learning language will also help you overcome challenges. When we were practicing lip reading she taught me about context clues, and how even though certain words LOOK the same on the lips, the context of phrases will help you decipher what is being said. This helped a lot when I took my college entrance exams and had to fill in missing vocabulary from sentences -- context clues! It was a skill I had been learning since the 3rd grade! Or as we were going over phrases she would tell me about ways to make it easier for me,
"How did you get that phrase so quickly?!" She proclaimed in mock disbelief.
"Because you were facing me, and I was looking at you." This quickly became not just the right answer for her little games, but also the key to my success in the regular classroom as well.

I learned how to address teachers who would talk while writing on the board, their backs facing the classroom. And although I was able to pick-up 80% of what was being said through the FM system, I never felt confident unless I am able to lipread as well. This is true even to this day. I get frustrated when people scream at me from afar, or when friends will whisper things in a movie theater. Even if I DO hear what is being said, I get frustrated because my natural instinct is to say "I can't see you, and if I can't see you then I can't hear you."
Having an FM system also means that I pick-up on ALL the background noise in a classroom. Every squeak of a chair against the floor, every soft rumble of the heater in the background, every hum of the lights in the ceiling, every single side chatter of conversation between students.. the list is endless! Being able to address my peers in a confident and cool manner about lowering their voices, or stop tapping your pencil! Was also an infinitely important tool that Mrs. B armed with.

I'm a firm believer that the more a student is able to advocate for his or her needs in the classroom, the better learner she or he will become. And in many instances this requires a certain level of comfort with the disability or learning difference that the student may have! So in the end, this is all the more reason that our educators and parents learn to form learning communities that foster inclusiveness and acceptance. The easier it is for students to speak-up for themselves, the stronger they becomes as individuals and the better prepared they are for the world OUT THERE!

In every Fracture Free Friday post I will answer one question that is submitted by a reader. Please note that these questions do not have to be OI-related and can cover any topic that you'd like to 'hear' me babble about. Send your questions into oi.perfect@yahoo.com   
--
Fracture Free Friday Q: Osteogenesis Imperfecta is under the umbrella of "dwarfism". Do you consider yourself a Little Person and how do those with OI view themselves in the LP community? 


A: I thought this was an interesting question because I had never thought about it before, but before I begin my response I must note that I'll only be responding from my own perspective!
Although I do consider myself to be a little person, I consider myself having OI first and the short stature is a symptom of the brittle bones disease. I must admit that I'm not very knowledgeable of the LP community and have only really "begun" to get involved in the OI community (with the start of this blog). Even though being a little person affects my daily life more than having OI does in my mind I affiliate more with OI than dwarfism. It's weird because I probably struggle more with being much shorter than needing to be extremely careful (at this point in my life), when I was younger this was the opposite; it was easier being short as a child, but because I was still learning what my body could and could not do I had to be more cautious. 
As I was thinking up a response to this question over the past couple of days I tried to liken it to being hard-of-hearing. On forms that request listing my physical disabilities I rarely remember to put down the fact that I am hard-of-hearing. I think that similarly to being short statured, I view both as symptoms of the OI but not the main lens from which I am looking through most of the time. Maybe it's because so much of the focus in how I have managed my life has been centered around learning how to be cautious, and managing a fragile existence? Maybe it's because I associate most of my pains and hurt (the fractures) as the more 'disabled' aspects of myself? I'm not really sure, to be honest. 
I can understand that telling strangers off the street that you are a "little person" instead of going into the whole "osteogenesis imperfecta, a brittle bones condition.." shpiel, but I do think that if I had to go with a label I would prefer to tell people that I have brittle bones. I think it's something that better represents my physical limits and capabilities, and also lets others know that they need to be careful - which I think is the most important thing. 


So readers, I am curious to know! Do you consider yourself to be a Little Person? And how do you see yourself in the LP community? Leave your responses in the comments section please!

In my first Top 5 Pet Peeves post I wrote about the top 5 annoying things people do to me because I use a wheelchair. For this top 5 Pet Peeves post I decided to list the top 5 most annoying things people do without realizing I am hard-of-hearing.

1. Talking to me during a movie we are watching in theaters
I don't always wear my hearing-aids so I can't totally blame people for this, but when I am not wearing them (which is 85% of the time) - I am relying on lip reading. If you are going to talk to me in a dark place when I am actually listening to the sounds that are blasting at me from the big screen, just know that I am going to nod my head and say "sure."

2. Mumbling
Just don't do that if you are talking to me, please. It sounds like someone gargling over static airwaves on the radio. It also sounds the same to me if you're going to put your hand in front of your mouth when you talk.

3. For best results, face me
People who have their faces turned away from me, or at an odd angle don't always get the response they are looking for from me - if any response at all. My lip-reading works in part due to context clues. So many words sound the same on your lips i.e. "mat" "bat" that without being able to see or hear the other words... well, there can be some pretty awkward consequences! "What? You want me to put the bat back on the floor? What bat? Where?" 

4. Do not scream at me dumbly
You are the only one who will look dumb. And also because I am also in a wheelchair there are many strangers who will kneel down and yell in my face. In case they hadn't noticed I am unable to jump into the air and do that mid-air split no matter how much they yell into my face, I just won't. My EARS are broken not my BRAIN. But just because you see a hearing-aid in a person's ear doesn't mean you treat them like they have no ears at all - they DO have a very expensive piece of technology in their ear that is meant to amplify sound after all.

5. You're not at a spelling bee so spell at a reasonable pace please
No one is about to rush you off the stage for taking an inordinate amount of time spelling a word. So if I ask you to spell a word like "opthalmology" - do not rush through the letters like you're sprinting to that last "y." Honestly, if you rush it I'll only make you repeat it again anyway. (Remember, I am the one with the power wheelchair..)