"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.

6 months of pondering

I haven't written in over 6 months.
I started to feel like I was whining. It came to a point where I had to decide if I was advocating or making excuses.
It took my son (as it almost always does) to open my eyes.
Cam took a spelling test at school. He failed. He's never made anything below 100 on a spelling test. Now I must tell you this is the Thursday "pre-test". The test that counts is taken on Friday.
When I asked what happened this is what he told me: "I was talking to a classmate before she started the test and I didn't know it started. I couldn't catch up, and she wouldn't repeat the words when I asked her to." Now I feel I must tell you that his teacher is a wonderful teacher and she even gave him the test a second time. The second time he was pondering a word and she went on to the next one. He asked her to repeat the word and she wouldn't. Now this made me FURIOUS!!! Now, I will tell you that I did scold him for talking in class because it's against the rules and he would not have been left behind on the first test, but what needs to be noted here is that even though he was breaking the rules he was at a disadvantage. He can't follow a background conversation. Do you think the little girl he was talking to before test #1 knew the test had started? Of course she did. Even though it was his actions that caused him to be behind, it was his handicap that caused him to miss out.
Now the second test, that is an entirely different irritation. These words all sound the same. And as a hearing impaired person myself I can tell you it is very hard to hear words called out during an oral test. But these words were: hose, rose, (those two not only rhyme but are formed the same on the lips no lipreading there) rode, those, hope, woke, joke, (again very similar on the lips...grrr) bone, stone, home. A hard of hearing kids nightmare!!! Not only does he have to figure out what word was said, but then his little 6 year old brain has to make the connection from the brain to the ear then he has to remember how to spell it, figure out how to write it, then try to decide if all of that's correct. Give me a break.
So I flipped my lid.
We studied the words again this time I gave him tips for lipreading and hard of hearing thinking. Something I've never done.
On Friday, he made a 100. As always. My kid's ability to overcome never ceases to amaze me.

Did I go to the school. No. Should I have? Maybe. Its one of those parental decisions you never know if you got it right.
I guess my thinking was if it was his final grade I would have, and at the same time it was an opportunity for him to be made aware of struggles he will have to face all of his life.
Will I bring it up at a teachers meeting. You bet. There's always room for them to learn and attempt to understand that he's always at a disadvantage when it comes to hearing. Will I have to have the way he is given his spelling tests changed, probably. But for now we're going to let it ride.

This is where I feel I've changed. I mean I can YELL AND SCREAM AND YELL AND SCREAM, but in the end it doesn't really help much. And it just makes me angry. I have to choose my battles.
This time I chose to put my anger aside and find a way to help my son deal with his limitations.

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.

Everything but the kitchen sink is in this post...Closed Captioning, Hearing Test, IEP's, Movies...

I started using the closed captioning on my T.V.
Let me tell you I was shocked. I've been watching some of favorite movies, again - for the first time! I can not believe what all I was missing.

Cam had his first "big person" hearing test last week. Its the first hearing test with truly accurate results.
His hearing loss is almost identical to mine. It shocked me actually. I was comparing his to mine and I got confused as to which was which. I had to look closely to keep it strait.
On a good note though nothings changed. (I'm always afraid he might lose hearing.) Not this time though, Thank Heavens.

We got Cam's IEP set up for next year and met with his 1st grade teacher. I think she is going to be fantabulas (my own created word there). That was an adventure all in its self. As the head of the special education department from the Board of Education said "We have a delightful problem with Cam, he doesn't qualify for services." Crazy I know, but its like his hearing is a disadvantage not a disability. His hearing is the disability which causes him to be at a disadvantage which qualifies him. Crazy yeah.
I thought it was hysterical that I had to get a hearing test to "prove" he was hearing impaired. I guess the hearing aids in his ears wasn't proof enough.

Anyone seen the new movie Knowing? Not giving away anything here, but the little boy character in the movie was hearing impaired and wore a hearing aid. Too Cute. Odd but facinating movie. I think it was the hearing impaired little boy with a hearing aid that I loved so much. :)

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.