"All I think about is ears." How true.

I've been doing some catching up on a new blog I've been following Big Teeth & Clouds. I came across a sentence in one of her blogs that I think describes what it's like to be the mother of a hearing impaired child. All I think about is ears. Every thing is ears. Can he hear that, does he know whats going on, is he going to get hurt doing things that require hearing, is he being teased, are his hearing aids working, is his language still advancing at an age appropriate rate, does he really understand, he should be hearing that why isn't he hearing that?...the questions go on and on.
Now White Cloud and myself, our children are still young, one might think that as our children get older they would take over that responsibility of thinking about their ears and we could relax. I don't think so. Take my mom for example, she still thinks about my ears. She knows my hearing, or lack there of, better than anyone, probably better than I do. To this day, if I'm not hearing the way she thinks I should be, my mom will still ask me, "Are your hearing aids working, or are you just tired?". I'm 32 years old. I've had my aids for 30 years as of last month. My mom still thinks ears. I don't worry about what I hear. I just hear it or I don't. I get aggravated about it, but I don't WORRY about it.
Our children are lucky to have us. I'm lucky to have my mom. We are probably the only people on earth who will, after 30 years, still care if our children are hearing well. That's a special bond that I can only share with my mom. She worries about my ears, even at 32. Why? It's simple really. All she ever thought about was ears.

Life on the Planet of the Regular Hearing Kind.

I have a friend who had a sever sinus and ear infection that caused him to temporarily lose his hearing. Now he says he can empathize with my daily struggles.(he started a new job during this event, thus making his experience more dramatic.) What is really funny about it though, is I can now empathize with all the people in my life who are of ,the regular hearing kind, who have to deal with me. I mean, all the repeating, the questionable responses, all the times you talk and no one hears you....ugg. I must say it has been interesting to see it from this point of view.
Thank you to all my friends for dealing with my disability and having the patience, just to be my friend. I've always known my real friendships were few, but now I know it wasn't me, it was them.

Closed Captioning in my Mind

We have had our first bit of warm weather here! Its so nice.
Not too much happening in the Hard of Hearing part of my life. Just the everyday getting by and irritation at not hearing things I want to hear.
Now that I'm aware of the world thats out there, I hate missing out. I've noticed that I have the biggest trouble with groups or side conversations (as do most HoH people) where people think you were listening in, and expect a response....I don't know what to say so I do the...(uhhhh), smile, nod, (please be the right response), look away quickly. Irritating. When I'm in a group I try not to talk too much, I tend to make myself look like an idiot. People are like "What are you talking about?", and then I'm like "Oh, I thought we were talking about something different, never mind." then I exit as quickly as I can to avoid any more humiliation. Sometimes I wish I had closed captioning in my mind or better yet on the inside of my glasses, like they do on those sci-fi movies! Only in the movies its enemy info they are reading, but the same concept.

Not fearing the unheard

I'm proud of myself.
I'm proud of all that I can do, despite the hardship.
I'm proud that I can do what I fear.
I can live and function in a world that doesn't notice that I struggle.
I can do it all, and still be sane....
I noticed today that I have risen above, above my own fears.
For that I am proud.

A Different Day, a Different World

I had the meeting with The Board of Education and also with Cam's school. I brought along the information packet for his teachers and the other educators that were present. It went really well. Better than I had hoped. That was about 3 weeks ago. Everything has improved so much. Its almost like having another school, another teacher and also another child. I didn't realize how much it was effecting him. Cam is happy and learning so much more than before. Its so nice to see him happy its nice to see him enjoying school again. I feel so blessed right now. I never would have thought it would work.
The whole experience has opened my eyes to the fact that sometimes you can get the help you need. Sometimes people really do care. Sometimes the system works. Sometimes I need to let go of my past and realize the whole world isn't out to get us because we're Hard of Hearing. Don't get me wrong, this doesn't happen often, but when it does, it shows me what the world is capable of being. A world where being HoH isn't a burden, just a different way of living.


Note: For those of you who follow my blog you will notice this is the first blog where I've used the term Hard of Hearing. I've done a lot of research on the terms and its not that I don't still see myself as Hearing Impaired or that I will never refer to myself as such, but I will use which ever term fits my mood, after all its just a term.

It’s okay to be called deaf, hearing impaired, hard of hearing or whatever title you feel comfortable with. It’s when you limit yourself, put yourself in a “poor me scenario,” and degrade yourself . . . that will stop you from reaching your greatest potential and aspiration in life.
~Justin Osmond

Cringe if you must, this is me...

Okay. So I'm reading my comments and I come across this one. I must confess I was baffled.

Amy,
Every time I read your blog I cringe. Have you taken a Deaf Culture class? Have you educated yourself fully? I just had to let you know that saying "Hearing Impaired" is incredibly disturbing the the Deaf/HOH community. Hard of Hearing (HOH) is the term that we prefer. Saying impaired implies so many negative attributes. If you notice MANY of your commentors also use the Hard of Hearing term. I encourage you to investigate this further and talk to other HOH people.
Blessings,
K

Why would anyone care if I referred to myself as hearing impaired? There's a "politically correct" way to describe yourself, in your own personal blog? I do consider myself well educated, in fact I would say I've got 30 years of experience being hearing impaired and furthermore why would I need to educate myself in the proper way to reference myself while writing my own blogs about my own self discovery as a hearing impaired person?
Also I don't consider myself culturally deaf so the Deaf Culture concept has never really appealed to me as a lifestyle. I've never taken a Deaf Culture class, not that I wouldn't find it interesting, but I do have friends that are deaf and live within the deaf community and my life experiences as a hearing impaired person trying to function in the hearing world is not the same as that of my deaf friends. Actually, I don't feel like I belong to any one group. I'm just me. If you were to describe me as being deaf, hard of hearing, or hearing impaired it would all be just fine.
I don't think people should be made to feel shame or be afraid to talk about things because they might offend someone, especially when that wasn't their intention. I also don't think people should take offence to something when nothing was meant to be offensive.
We all have different stories and backgrounds, and the way we refer to ourselves varies based upon where those stories and backgrounds have lead us. Whats negative about that?
If you, yourself like to be referred to as HOH instead of hearing impaired, I totally respect your decision, but what does that have to do with me?

Crazy Me

I figured out why I wasn't hearing so well. It turns out that I have a humongous hole in my left hearing aids tubing. I don't know how I'm hearing out of it at all. I was shocked when I noticed it. I mean gee I really don't pay much attention to my aids huh? Its such and eazy fix.
Crazy Amy... Just Crazy. :)

Trying to stay out of the Royal Court, and hear at the same time...,

My hearing aids haven't been working well for the last few days. Its like I can't get them loud enough. I'm worried they are on the edge of self-destruction. Ugg...
I will be working tonight. I agreed to work the weekend nights to help boost morale among our servers and front of house staff. This is usually a fun job. After all a good attitude is contagious. Tonight however, I found out that "The Queen" will be in our restaurant. Now don't get me wrong, for the most part The Queen has great ideas and suggestions. I also like the fact that she encourages everyone to do their job-the way they were trained to do it. After all I am the Lead Qualified Trainer at my restaurant, so I love to see everyone doing it the way they were trained. But anyway, what I dread is the music. Queen turns it so loud you cant even hear yourself think. Now I know she is following the "lets make it a lively place, happy and fun". But GEEE's it makes my night so stressful and it makes me angry. I'm trying to hear my guest, I'm trying to hear my fellow workers, trying to hear the bosses, and all the while trying to hear everything around me so I don't look like an idiot when someone calls for me or ask for something and I don't respond because I didn't hear them!
Well, its time for the peasant to get dressed and go serve her lord at the manor, all in hopes of keeping his queen happy.

The Ramblings of Nothing Exceptional...

Being the parent of a hearing impaired child comes with many challenges. Being the hearing impaired parent of a hearing impaired child makes those challenges,,, different. For instance, something I've noticed that typical hearing parents worry about is how their child is going to be perceived by its peers. Are they going to be made fun of or even have friends at all. I don't give that a second thought. Hearing impaired or not all children will either be liked or not. Then at the same time, because I have lived it, I fret over things other hearing parents might not notice. Number One on my list is and always has been education. My school days were a living HELL, and I don't say that lightly. School was a complete nightmare for me. Not because of lack of friends, but because of lack of education. I was always a failure. I never "applied" myself. I was "scatterbrained". I "didn't listen". I "wasn't paying attention". I "talked too much". And my personal favorite, I was "Lazy". All the while, I didn't know why I couldn't "apply myself" or "listen", or "remember my home work assignments". I wanted to be a good student so desperately. That's what made every day of my school life torture. I CAN NOT let my child live that experience. He's smart. He's beautiful. He's also hearing impaired. If that teacher had to go though one day trying to function in the hearing world with only hearing aids... Ha! I laugh at what would happen. Ok. I know I'm ranting here. I'm just angry.
Today at work it was so nice to be there, doing my job, listening to conversations and when I got lost, I could just walk away and go do my job. After a while you get used to missing everything. Actually its okay. I thought today how strange it was that I just accept it. I always think to myself, "its not important anyway". On second thought, though, maybe it is. I don't know.
I want to be more. I WANT TO HEAR WHAT YOUR SAYING! Okay it matters.
But the older I get the less it really matters. I just give the "didn't hear you, but I'll let you think I did" nod and walk away. Hide. Get lost in myself. I've spent my life within myself. Ok. This is turning into a rambling of sorts when all I really wanted to say was that I spent my life in the public school system here in Nowhere, Alabama as someone who was "nothing exceptional". When all the while, it was the teachers who were nothing exceptional, because they let a beautiful mind go to waste. They let my education slip right though their hands, and didn't even know it or care.
Ok. Again I'm rambling. I'll stop.



"There are few pains so grievous as to have seen, divined, or experienced how an exceptional man has missed his way and deteriorated"
~Friedrich Nietzsche

my writings as a hearing impaired child

I've been writing for as long as I can remember. I have poems and diaries that date back to when I was as young as 8 years old. Writing has always been my outlet. Even though I was part of the "Forgotten Generation" of hearing impaired children, (the ones who were taught to be mainstreamed then over looked and forgotten about as if we had no disability) It was always in the back of my mind, and sometimes it would show up in some of my earliest writings.

One of the older poems I still have, dates back to October 1986. I was 9 years old.

Alone

Alone beneath the beam of the sun
and the rays of light
There was no way to tell how I felt so alone.

I can remember witting that poem as if it was yesterday. I remember how the sun was shining so beautiful that day and I can still smell my mother cooking dinner. I remember it more because of the weirdness I felt. It was the first time anyone had ever called me a name because of my hearing impairment. The girl called me a "Deaf Mule". Hey, we were 9. She didn't even know what it meant. I'm sure she meant to call me a Deaf Mute. How crazy is that.


Heres an interesting diary entry. I was 11.

Dear Diary,
July 7, 1989
If I had just three wishes:

#1. That I could hear like others

#2. I could have 3 boyfriends

#3. I could have magical powers


You know what though? At 31 those still sound like pretty good wishes....lol ;)


The best way I can think to sum the blog up is with one of my favorite quotes.

"Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passions, they cannot alter the state of facts and evidence." ~ John Adams

Life Happens, Hearing Impaired or Not.

Its been awhile since my last blog.
Life Happens.
I got my hearing aid back, its working great.
I had and iron infusion, and take two pills a day.
I took a small leave of absence from work over the holidays because I had strep throat, and my mom was in the hospital.
Life Happens.
Christmas came and went.
My car bit the dust. Got a new van.
Went back to work.
Celebrated my 9th wedding anniversary.
Life Happens.

Everything has fallen into place now,, for a while I hope... :) I worked my first two shifts back at the restaurant Wednesday and Thursday. They went well. It felt good to be back. I've taken a step back from management for awhile. Its taken away a lot of the stress.
Hearing isn't an issue when you don't have to prove yourself all the time. I'll jump back in there soon, I'm sure... I can't stay silent for too long. Right now, I just cant fight the fight. I've fallen back into my comfort zone. I just need a break from the struggle to succeed in the hearing world. Sometimes I just need to be Amy. Not the Amy fighting for equality.

The Leg Bone is Connected to the Hearing Bone

My RLS (Restless Leg Syndrome) is back, and flaring. Grrrr. I get so tired due to the lack of sleep. Today I was a walking zombie. That meant I couldn't hear. I was too exhausted to focus.
I have to be rested to hear. I hate RLS.

Hearing the Unseen

I was was the opening manager at work this morning, and I was left with no choice but to do a conference call. Alone. Are you kidding me?!?
N I G H T M A RE.
I freaked out.
I've been on many conference calls before, but only as a listener (at other jobs). I've never been the one that had to represent my employers. I've never had to worry if I was missing anything, or if I was able to keep up with what was being said. I could get someone to fill me in later. And I sure didn't have to participate in the conversation. This morning I just didn't want to sound like an idiot in front of the other restaurants in our district, or our new district manager.
I did just fine.
Nothing to it.
I hate it when I freak out about something and later realize I was being stupid. I just don't trust my ears to do the hearing for me. I need to learn to trust myself to get the job done. Its scary sometimes to think that I can be a professional woman in the service industry and be hearing impaired.
I'm just Fantabulus!!! ;)

The Pain of a Loaner Hearing Aid

I had forgotten what it was like when "loud" noises hurt. The loaner aid I'm wearing is not digital. It has a volume control. Wow. I had forgotten. I missed my volume control so much when I changed to digital. But now, after wearing an older analog aid for over a week now,,, I'm grateful for the lack of control I have. Its nice to have aids that adjust on their on. Cam squeals in my ear and it HURTS. Power tools are a no, no. And the high pitch beeping and clanking noises in the kitchen at work are torture, not annoying -PAINFUL!
The sound is so different too. Its bland. Dull. And it has NO DIRECTION. At least I can get a general idea of how far away a sound is with my digital aids, but with the loaner....Nothing.
I will be so grateful to get my aid back.

Not Loud Enough, too loud, Not Loud Enough, too loud, Not Loud Enou...

Now that I'm aware of my failing aids, I have been forced to use setting 3 (the loudest setting programed on them). This wouldn't be so bad, except setting 3 wasn't intended to be used as my primary, so the background noise is huge and the loud clanking and beeping noises in the kitchen are horrific. Makes for a tiring day, and a saddened state of mind. All I want to do when I get home is sit in the silence.

Hearing in the Dark

When I was pregnant with Cam, we read all the books, went to all the classes, quizzed all our friends and family trying to gain information that would help us with labor and delivery. When I saw the pamphlet for Lamaze classes that were being offered at the hospital that I would be having my baby at, I snatched it up. After all, thats what you do when your having a baby, you go to Lamaze. When I got home, I made the called and found out when the classes started. We were told to bring a pillow. I was so excited. Lar was too. The afternoon came, we got dressed, drove down the the hospital. It was so thrilling to know we were going to get to share time with other parents and learn techniques to help with labor and delivery. When we got there, we went to the wrong floor. Searched. Panic. No one knew what we were talking about. This was a new program that was being offered. So we read our pamphlet again, and realized our mistake. We were 10 minutes late. Uggg, I hate to be late. When we got there, no big deal, we weren't the only ones who had gotten lost. Thank goodness.

We began the class by going around the room telling our names, and if it was our first child.
How fun this was.
Then the instructor told us to get in a comfy position with our partners behind us.
We were going to start by learning some relaxation techniques.

Then to my horror, without warning, she turned OFF the lights!!!

Larry could feel me tense up. He rubbed my arm. Letting me know he was there with me and it was okay.

Then she began to teach the class.
I heard nothing she was saying, because not only was I in the dark, she was whispering.
Then to my horror again, I heard the parents apparently answering questions.
Please, please don't let her ask me anything.

We laid there in the dark for what seemed like eternity.

I know they were talking and discussing things, because every now and then someone would be just loud enough I could hear parts of what they were saying.

To say the least, it was a nightmare.

Then the lights came back on and it was time for a break. Snacks and drinks.

Larry took one look at me and said, "you want to go?" I just nodded my head yes.

We slipped out the door without ever saying a word to anyone.
The minute we were out in the hallway, I burst into tears.
I was devastated. My first real important task as a mother and I failed.

The next day I went to see my chiropractor. He asked me how Lamaze went. I told him the story. Then he gave me the best advice anyone gave me my entire pregnancy (as far as labor and delivery) "You don't need Lamaze. Your body knows what to do. Trust it."

So I did. I had the most wonderful and perfect delivery. It went a beautifully as I had hoped it would.

The thing about this story that I find interesting is the fact that now, I would jump right in there and be like "Wooooohhhaaa,,,what are we doing here? I'm hearing impaired, I'm going to get nothing out of a class in the dark." Then see if we could reschedule for a Lamaze that would be more appropriate for my situation.

It really doesn't matter though, because in the end, it worked out.

I'm just so thankful that I can now speak up when its "too dark" for me and I can't hear. I have to be Cams advocate, and show him the way to be his own advocate....
I have to show him the way out of the darkness.

The Greatest Show On Earth

Now that I'm aware of the fact that my aids are not working as well as they should be, it REALLY bugs me.
I want to hear what people are saying. The first time they say it.

Guess I'll have to start saving the money for the new aids. Let's just see how long it takes me...

On a good note though. Today at work, I asked the manager on duty to turn the music down so I could hear my guest better. (For those of you who don't know I work in a restaurant)
I actually asked for an accommodation!
That might not sound like much to most people but its a big step for me. I've always thought of myself as a typical hearing person... ha ha thats a joke. I had to become an adult and see though my child the BIG picture. To see what a handicap being hearing impaired really is.
Then I realized that I had to teach other people what being hearing impaired is really about.

Oooh, the crazy fun world of working in the service industry with hearing aids. It really forces me to push the limits. It forces me to live in the hearing world as a hearing impaired person. It forces me to make it okay for those around me that I'm hearing impaired. Its odd that I have to make it okay, for them to be okay, with the fact that I have a disability.

Sometimes my life feels like a circus act.

ATTENTION: LADIES AND GENTLEMEN, CHILDREN OF ALLLLL AGES:

SHE HAS A DISABILITY,
SHES HANDICAPPED,
SHES HEARING IMPAIRED!

RIGHT THIS WAY FOLKS:

"Now. Are you okay with that?"
"How can I help you be okay with that?"
"Let me show you how this works."
"Let me show you how to, help you, make this work."




So whats next?
I guess, not becoming that "HANDICAPPED" person?

Its such a fine line. A balancing act, really.
Just like the Circus,
Sometimes I'm walking the tight rope,
sometimes I'm the freak show,
sometimes I'm playing the clown,

But the best time of all
is when I get to take off my costume, my mask, leave the circus at work,
and just
sit at home with my family,
and just be ME.

The Word of the Day IS...

Okay, so today I found a new word I was pronouncing incorrectly.

For those of you who are not hearing impaired or have never experienced it, this is a crazy thing. You've went your entire life saying a word a certain way, only to find out later that its not the way its pronounced. For me its VERY hard to correct. Either I misunderstood the word when I first heard it, or I read it, and have never actually heard the word spoken to know its pronunciation. A lot of times too, I will think there are alternate ways to pronounce a word and that is why sometimes even though I know the correct way, I think mine is okay too.
Some of my most common ones, and the ones my hubby and mom have corrected me on numerous times, are just plain funny to me, at this point I know the correct pronunciation, I just don't realize I'm saying the words wrong.

~Suite (I say suit,, Hotel Suit....my hubby loves that one...hey it makes sense to me, I mean, we have a suit of furniture and suit of clothing which is a group of items so why not a hotel suit?!?)
~Preference (I say per-fer-ance)
~Magnolia (I pronounce it mag-no-yee-a, this is my moms favorite...she has corrected me since childhood and I still get it wrong)

~Todays Word: Ter-tast-er-fee (the actual pronunciation is *drum roll please*........

Catastrophe !!! Thats right folks thats how I've been pronouncing catastrophe.

example: The party was a tertasterfee....)

Oh, the crazy, funny, life of the hearing impaired. You just gotta love it...
Its still kicking my butt at 31. Only now, I can laugh at it. I love being an adult, because its okay to like yourself and laugh at your imperfections when your a grown- up. Its a shame you're not allowed to do that as a kid.

If a Woodpecker Pecks on a Pine Tree and You Can't Hear it,,,,does it still make a sound?

Today we went hiking. We had such a great time. We always do when we're outside. Especially in the forest. We love to hike, swim, ride our bikes, explore, anything in nature really. So, today, we're out hiking and we find a beautiful resting spot by a little stream. It's the most perfect weather, the most perfect amount of sun and shade. I was sitting there being thankful for the beautiful day, while Cam and Lar were looking for "fish" in the stream. All of a sudden Lar had us all be quiet so Cam could hear a woodpecker.

Umm,,,,

Shhhhhhh!!!

Shshh!

Mommy can't hear the woodpecker...

Ohhhh, wait. It must be too far away for us to hear it.

"Hey! Cam, can you hear that Woodpecker?"

"Yep, its going peck, peck pe e e e e e e e ek"

WHATS GOING ON?!?

By now I'm irritated. I want to hear the stupid woodpecker. My hearing aids have different settings on them that my audiologist and I set up for me. I have one that I use that is basically just my normal hearing but REAL loud. I use it at College to hear the professor in a large, quiet room. So anyway I turned it to that setting....and BAM! It was like the world came alive! I could hear birds, the woodpecker, leaves falling, water trickling down a stream, and way off in the distant other hikers.ARE YOU KIDDING ME?!?
I was living more in the dark than I realized! I felt so cheated!
When I first got the aids I'm wearing now, I could hear like that. Over time they have gotten weaker (I'm pretty sure its not my hearing.) and I really hadn't noticed HOW much I was missing!!!!
Grrr...
I hope I can find a woodpecker to peck on a money tree for me.
Because New Hearing Aids = MONEY
Its a double edged sword though,

Because New Hearing Aids = New Technology & Much Better Hearing, which = MONEY....

My biggest fear is money. That sucks. My insurance company should pay for them!

I needed to know that I wasn't hearing as well though...

So!
Thank You Woody Woodpecker!

Mommy's got Strep Throat!

I've got strep throat! Uggg. This is horrible. Thanks TK for giving my strep... ;)

I can't get near my kid.

I can't eat.

I can't swallow.

I can't sleep.

But what bugs me the most, is that

I CAN'T GO TO CAM'S SCHOOL AND TALK TO HIS TEACHERS ABOUT GETTING HIM THE SUPPORT HE NEEDS TO GET AN EDUCATION!

However, after much, much searching I found a great resources for explaining and giving the info to the teachers. I desperately was searching for something that would help me explain the strategies and techniques that were needed to give Cam the best start in school that we could give him. I put many searches together and came up with a package I think might work.



Later when I'm feeling better I'll give you a better look at what I came up with.