Ear Ye Ear Ye

Welcome to my blog! As I go on my bilateral cochlear implant journey, I hope to share some of my thoughts and insights. My initial stimulation (a/k/a hook-up) date is set for January 4, 2006. Enjoy!

Thursday, March 08, 2007

It's been too long since I last posted...

Being pregnant, having a beautiful baby girl, being on maternity leave, returning back to work, and then catching up on everything, I realize that it's been a really long time since I last posted. I wrote the following response on a parent support group list-serve that I belong to and thought I would post it here. Happy reading!

[Here's my post]
As an audiologist who was formerly a hearing person, experienced a progressive hearing loss and ultimately received bilateral cochlear implants, I thought I would chip in.

First of all, there are many hearing loss demos on the Internet. Here are some examples:

Talking in generalities here, "hard of hearing" would connote that there is some residual (usable) hearing - either with or without a hearing aid. When I was still hard of hearing, I could hear things but not necessarily make out what they were...some sounded muffled...some sounded faraway...some I didn't hear at all. Check out the sound demos. Hearing aids just amplify sound - doesn't necessarily make it clearer. So, while with hearing aids I could hear more sounds, I couldn't necessarily understand them - kind of like a radio being slightly out of tune and you keep trying to turn up the volume to help you understand it but it still doesn't work.

Now that I am "deaf", I hear absolutely nothing when my implants come off other than the head noise (also known as tinnitus) that I constantly have. After a while, the tinnitus fades out and it doesn't bother me. As a former hearing person, it's like the world is on TV and someone hit the mute button. When I don't hear, my sense of vision and my sense of touch really become heightened. I feel more aware of any visual change in my environment and seem to be more sensitive to vibrations. Can I just say it's nice being "deaf" when: my 5-year old wants to listen to the same Veggie Tales song for the MILLIONTH time, I can't console my 4-month old but know she just has to cry it through, and I don't have to listen to my husband snore at night (though remember I'm still sensitive to vibrations which register like a 4.5 on the Richter scale LOL!).

As a former hearing person, sometimes I do feel sad because I know I don't hear like I used to and realize that I don't hear everything...on the flipside though, I am SO grateful to the technology that allows me to do things like talk on the phone again and enjoy music and hear my children talk to me.

For the kiddos that are born deaf and either get hearing aids or cochlear implants, yes, amplification can give them access to sound but it is still necessary to learn what these sounds are. Arthur Boothroyd once said something at a conference that really brought this home to me: "Listening is 90% context and 10% acoustic" Another way to look at this is that for our congenitally deafened kiddos, when all of a sudden they are able to hear, it's like hearing Chinese. You can hear all of the phonemes and syllables but if you don't know what it MEANS, then it doesn't matter. We need to help our kiddos (or ourselves) make sense out of these sounds. We also need to fill in those gaps so when they do miss parts of conversations (which they will), then can fill in those gaps with background knowledge. This is what hearing people do when they don't hear something. Oh - that's another thing...after working with kids with hearing loss, they were always amazed to learn that "hearing people don't hear everything!" Please make sure that your kids realize this!

I think the most important thing for me that kept me from having pity parties was being around other people who had hearing loss as well. That's why support groups and groups like this one are so invaluable. Not only could they understand what I was going through, I saw lots of role models. I learned how to be a deaf audiologist, I improved my sign language skills, I saw successful CI users - I really have the best of many worlds. It's important especially for the kiddos to not feel like they are the "only one" (as is common in rural areas) and not only to meet other kids with hearing loss but adults. I remember when I was in school hearing stories of kids who had never met other people with hearing loss...it broke my heart to hear that they thought that (a) they would become "hearing" when they grew up or (b) they thought they would die when they grew up...all because they never met another person like them. Kudos to Karen Putz for being a mentor and doing exactly this!...helping parents navigate the world of hearing loss and helping kids see what it's like to be a deaf/hard of hearing adult. That's the other part - as a parent, you need to be supported and support other parents because they're the only other ones that know what you are goingt hrough.

Wow - this is pretty long. I'm gonna stop here. I hope this helps.

Kind regards,~ Tina ~

[Original post]
> I have had these questions in my head for a long time and was wondering if anyone could answer them. What does it sound like to be deaf or HOH? Is it just complete silence? Can you hear yourself talk or can you just feel it? Also, do you ever wish you could hear like every one else or since it's just a part of you there is nothing to miss? Is it frustrating? Does it make you sad? Did you get made fun of in school because of it or where you accepted? I think about these questions over and over again every time I look at my 2 year old son and wonder how his life will be. All I want for him is to be able to communicate with all sorts of people and be happy with his life. I worry that he will wonder why he was born with this problem and feel depressed about it as he becomes an adult. I would give him my ears if I could in a second without question. I am hoping those of you out there who are adults who have grown up deaf or heard of hearing could help me out. Thanks so much you are all very wonderful people.


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