Learning How to Listen

There is a real possibility that I may never understand speech without lip reading. I have never really been able to understand speech without any visual clues. The best I could do was with my hearing aids and I could only understand my name if my mom was the one saying it (sometimes), no, yes, ok, hi, and bye. That was even with some audio training and after years of wearing aids. My aids did help with lipreading just by being able to match up sounds with lip movements.

Even though it has been 2 months post activation I still sometimes struggle to tell when words are same or different during audio rehab. It’s usually with words that are similar except for vowels (e.g. Wean/Win, Loop/Lope, Peep/Pin). I have to really concentrate to listen for differences and lots of times the difference is so subtle to me that it sounds the same. Those vowels just kill me.

I do find it interesting though that the ONE type of speech sound I can usually recognize is sh/ch/s/z for some reason although I can’t tell you which is which. It’s just so distinctive from all the other speech sounds I’m hearing. Not only does it sound different, it also FEELS different. Anyone know why?

About half of the time I can guess a general type of “letters/sounds” in a word when doing audio rehab. For instance I can sometimes guess if it’s a sound that’s more like a m or n. I can guess if it’s a sound that sounds more like a k/t/c/d/p. However I can’t tell the difference between k, t, c, d, or p sounds. That’s only during audio rehab. I rely only on lipreading when talking with people. It’s going to take a while before I can blend both auditory information with visual clues.

I think at this point I’m really learning HOW to listen instead of recognizing and identifying sounds. I’m still figuring out what I’m supposed to be listening for.

I do feel like I’m hearing mostly everything but it all runs together and becomes one big fuzzy thing.

baby steps……baby steps….baby steps….

Deaf Adventures #6: I Can Cross the Road Myself

Believe it or not, I can cross the road myself. 🙂

Growing up, I always seemed to make hearing people really nervous whenever I was near a road or when I was getting ready to cross a road. They seemed to think that because I couldn’t hear my destiny was to get run over by a car or something.

I completely understand their point-of-view but there is a reason hearing kids are taught to look both ways also. As a child I was very aware I couldn’t hear cars coming and I couldn’t hear people yelling at me if I was in danger so in a way I was more responsible for myself at a younger age. I actually looked both ways before crossing roads more often than my hearing friends did and it always made me nervous when they tried to rely only on their hearing.

For some reason every time a deaf person gets hit by a vehicle people automatically blame that on their deafness. However, hearing people get hit by vehicles also. That’s one of my major pet peeves. When, I, as a deaf person make a mistake…people automatically place the blame on my deafness when it’s not always the cause. Sometimes it even makes the headliners when a deaf person gets hit and of course the word “deaf” is always included in the headline. Why is that? Another pet peeve of mine.

This usually happens with a group of hearing people who I have just met for the first time. I understand that they’re trying to watch out for me which I appreciate but…really…I am perfectly capable of crossing a road by myself.

Surely once I hit my 20s people would realize that I can cross a road without any assistance. Wrong-o! A classic example was back in NYC when I first started graduate school. It was the first week of orientation and we didn’t really know each other. I was getting ready to cross a small and quiet 2-lane road with a group of hearing people. One person felt like it was her duty to babysit me….she grabbed and pulled me back before I started to cross…she then tried to grab my hand but settled for my arm and made it a point to look both ways…she then continued to hold my arm as we crossed the street.

*groans*

This is why sometimes I feel like I have to prove my independence to others. It is really weird and a bit offensive when at age 25 people still treat me like I’m 5 years old when it comes to crossing a road. Of course this doesn’t happen often but it does happen every once in a while.

If I ever get hit by a vehicle (which I’m really hoping will never happen *knocks on wood*) it will NOT be because I’m deaf. It will be because either the driver wasn’t paying attention OR because I failed to look both ways.

I know people mean well but please do not grab my hand/arm/shoulder when we cross a street unless a vehicle is heading towards me. Then feel free to try and save me if it looks like I’m about to get hit…who knows, you may become a hero then. :-p

Everyday is a Surprise

I never know what to except because sounds just sound different everyday.

It’s so interesting to see how the way I process sounds changes over time. Things that I heard yesterday sound different today and who knows how they will sound tomorrow.

Communication Modes Used in 24 Hours

I was thinking the other day about how it’s not that uncommon for me to use following communication modes in less than 24 hours.

–Lipread with sound (CI)
–Lipread without sound
–Write back and forth
–Gesture
–Speak
–SEE2
–CASE/PSE
–ASL

No wonder I get confused sometimes when I have to shift between various communication modes throughout the day. Towards the end of the day they usually end up blending together (my poor friends and family who have to put up with this). I’ll start out a sentence using one communication mode and then kind of switch towards the end of the sentence to another mode. Or I’ll find that a concept is expressed better using a specific mode so I’ll switch between modes or blend different modes in order to express that particular concept.

Some days it just wears me out and I can’t follow anything. Other days I love it because I feel like I’m using my brain in different ways which allows me to apply my skills in different ways which then allows me to learn more things. For example if I use ASL for an extensive period of time I feel more creative and emotional whereas if I use SEE2 for an extensive period of time I feel like I think more logically. When I rely on spoken language (speaking and lipreading) I process information in a very different way.

The most important thing is that successful communication between myself and another person occurs regardless of which mode is used.

And erhmm….I really need to stop blogging so much don’t I? Easier said than done.

That, Pah, DoDo, Champ

ASL is not a written language yet friends and I find ourselves IMing each other ASL concepts (for lack of a better term) every once in a while. Every once in a while we’ll slip and use them with hearing people who then give us strange/confused looks.

I always smile when we do this. This is what makes us unique (a good kind of unique). It’s so much more than the words themselves. It’s about understanding each other and it’s almost like an inside secret.

They may look just like words to people who are not familiar with ASL but they convey so much more than a simple definition. They don’t necessarily have the exact same definitions as when used in the hearing world. They’re used in a different way in the Deaf world than in the hearing world and each one represents a concept. It would take me a sentence or two if I wanted to convey the same concepts in the hearing world.

That! DoDo? Pah! Champ!

What are some other ones I’m forgetting?

New Feature: List of Sounds

Look over to the right of this post.

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I added a new feature to this blog. It’s a list of sounds I can hear with the CI. It is NOT an extensive list of everything I can hear with the CI. It’s more of the sounds where I go…whoaa, THAT makes a noise?! Or sounds I’m fascinated by. Or sounds that just seem to be more clearer than they were with hearing aids.

Maybe it’ll also show why sometimes I just need silence.

I oftentimes have hearing people ask how deaf people can live in silence? It’s so nature and normal to me to live in silence. I wonder how hearing people can live with constant sounds. I really don’t know how hearing people can fall asleep and sleep through the night. 😉

I’ve found that sometimes when I tell a hearing person I hear something…they’re a bit skeptical because they don’t hear it themselves. I then have to tell them to LISTEN (anyone else think it’s ironic when a deaf person tells a hearing person to listen?). Usually they hear it after I draw their attention to it. Just goes to show how much people tune certain things out.

Just thought it would be easier to make a list instead of updating my blog about it all the time. I have it set to show only 15-25 items at a time so check it out every once in a while and hopefully I’ll remember to update it from time to time.

I’m still light years away from distinguishing speech sounds. However, I’m almost to the point where I was with my hearing aids so my brain has adjusted a lot in the past 7 weeks. It probably isn’t very noticeable to people around me but it’s noticeable to me. Especially when the first 2-3 weeks were just blechhh, lol.

CI vs "Normal" Hearing

Does anyone know how a CI compares to “normal” hearing? How would you describe it?

I know there are websites out there that tries to illustrate how a CI sounds so that hearing people can get an idea of what CI users hear. I’m not sure how accurate these websites are and I’ve always been a bit skeptical to post them.

I’m trying to figure out a way to explain to hearing people how what I’m hearing differs from what they hear. If any of you have progressive hearing loss and received a CI…how does it compare to what you could hear previously? Anyone know of a good CI demo stimulation website to share? It’s a bit hard to explain when I don’t have anything to compare my CI with except hearing aids which is different from how people with “normal” hearing hears anyways.

I’m also curious myself.

It’s interesting how deaf people have to learn how to identify sounds when they’re hearing it in a different way from hearing people. Makes me wonder if all hearing people hear things differently. Even though a sound may sound different to them they’re able to identify it as the same thing. Does this have to do with how we process sound, personality, exposure, etc.?

Deaf Genetic Counselor?! Who?! Where?!

Over the last few years I’ve learned of a few genetic counselors who are hard-of-hearing. From my understanding they either have enough hearing to get by without hearing aids or they have progressive hearing loss and benefit greatly from hearing aids. I have yet to meet another deaf genetic counselor.

Every once in a while someone will contact me or someone will come up to me at a conference and start talking about a deaf genetic counselor (or a deaf genetic counselor student). I then get all excited and start asking Yeah, for real?! Where?! Who?! How did you hear of him/her?! People usually don’t know this person’s name and it’s something they heard through the grapevines.

We then spend about 10-15 minutes trying to figure out who and where. Towards the conversation I usually end up going, “oh wait, that’s me we’re talking about.” Ehh….this isn’t as exciting anymore.

This just happened recently.

Background: I am working “part-time” as a genetic counselor for a company from out of my home in Kansas. They have an office in Florida. I have been in touch with a group of people in California who are working on a deaf genetic research project and how to translate genetic concepts into ASL.

Anyways I e-mailed someone from the California group to follow up on something. They then told me that the genetic counselor at their center had received an e-mail with a few questions and it was somehow bought up that they had a deaf genetic counselor on staff in Florida.

Of course I then got all excited and asked who and where in Florida. They didn’t know who but knew it was someone in Florida. I didn’t make the connection right away because I’m miles away from Florida. It took me a few minutes to make the connection before I realized we could be talking about me. I then asked if they could find out the name of the company. Sure enough we were talking about me.

It’s a bit weird to spend 10-15 minutes thinking you’re talking about someone else when you’re actually talking about yourself.

“Moral” of story: More deaf people need to get into the science field…preferably the genetic counseling field so that I’m not constantly finding myself talking about me in 3rd person with strangers. 😉

So…*shoo*…go and apply to genetic counseling programs! :-p

Happy Mother’s Day!

Mom,

I don’t thank you enough for everything you’ve done for me and for others. You’re always worrying about others before you worry about yourself.

I may be an only child but I’ve always kind of shared you with my friends and extended family members. I know some of my friends/extended family members think of you as their second mother in many ways. I’ve always been proud to share you with others.

You’ve done so much for me growing up. I could go on and on all you’ve done for me growing up, especially as a mother of a deaf daughter. There’s one little story I want to share with you that really made an impression on me and has helped me get as far as I have. You may or may not remember this but I remember it like it was yesterday.

I was in the 4th grade and was about 9 years old. You were either picking me up after school or taking me to gymnastics and I was upset that I hadn’t done well on something in school. I’m not sure if it was a homework assignment or a test. Instead of getting upset at me for not doing well you asked why I didn’t do well. You were always more concerned about how to improve and change things for next time rather than focusing on the past. Out of frustration I said I didn’t do well because I was deaf and that was the end of it. I will never forget the look on your face. I didn’t realize how much that comment would hit you. You then looked me directly in the eyes and told me to never ever use my deafness as an excuse and that it wasn’t acceptable to do so. That was your honest answer and not something you felt like you had to say. I thank you for that. I thank you for not letting the fact that I’m deaf lower your expectations and for not letting me use my deafness as an excuse.

You fought for me when no one else would and you never gave up. Remember when we moved to another town when I was about 8. I was getting ready to start my 3rd school in 3 years in a town that had no other children with hearing loss my age and the school district was about 15-20 years behind in terms of mainstreaming. Do you remember when the bus failed to pick me up the first day of school and you had to take me to school? Remember the teachers met us out in front of the school building and tried to prevent me from going into the main building? They tried everything in their powers to stop me from being mainstreamed. You didn’t back down. We went through this year after year from 3rd-9th grade in this particular school district. You never caved in and you never backed down when it would have been easier to do so. Instead you showed me that it’s okay to hold my ground and the importance of educating others.

You also taught me the importance of empathy and respecting others. Remember when Mary first moved to town and she was extremely upset about the move. I had to sit next to her on the school van for an hour each way to/from school in the mornings and she was constantly making fun of me and my friends. You explained to me as well as you could explain to a 7-year-old kid that she was sad and lonely. She was jealous that she didn’t have any friends and so she pushed people away. I didn’t quite understand why someone who wanted friends would be so mean. I did what you told me to do and just ignored her. One day I couldn’t ignore her any longer because she was making fun of you and dad. I then shot back with some comment and ended up getting punched in the face. She then told teachers that I hit her when in fact it was the other way around. Mind you she was twice my size…I was in the 2nd grade and she was in the 4th grade. I thought for sure you would finally understand why no one wanted to be her friend. I was wrong. After you calmed me down…you then tried to explain again that she was just really upset about the move and that I could do what no one else was doing…which was try to be her friends. I thought you were crazy. Here you are telling your daughter to try and be friends with a girl twice her size who just hit her. You and Mary’s mother arranged a play date. Sure enough, we hit it off and became friends. You were right…all she needed was a friend. You taught me that when people are upset and mean…sometimes all they need is a friend and not to judge them immediately.

I’m sure it threw you off when you found out I was deaf. You had a lot of difficult decisions to make in terms of how to communicate, hearing aids, CI, Deaf vs hearing culture, etc. Every single decision you made as a parent for me has been the best and correct decision for me. More than anything else…you’ve given me the gift of being able to communicate with you and dad….my parents. As you know not all hearing parents with deaf children do this. You’ve also never made me feel like my deafness came first. I have always felt like I’ve been Kelly, your daughter…not Kelly, your deaf daughter….and I thank you for that.

Sure, we’ve had our ups and downs just like any other mother-daughter relationships but we’ve always stuck by each other. We’ve been through a lot together. I appreciate each and every day I have with you because we know too well how short life is and how quickly life can change.

Happy Mother’s Day!

Love,

Kelly Marie

P.S. I’m blogging this because I want people to know how awesome you are. 😉

A PhD in the Family and Next Step

My parents and I went up to Minnesota to see my cousin graduate with his Doctor of Philosophy in Chemical Engineering (yep, he’s the smart one ). When friends asked me what he was graduating with…I really enjoyed telling them that he was getting his PhD (I’m a proud cousin what can I say?).

CONGRATS SCOTT!!

Dad, Scott, Moi, and Mom

I was a bit surprised at how well I could pick out some sounds during the graduation ceremony. A few people asked if I could hear the organ and my answer was that I could…but that it was kind of monotone. Apparently that particular song was actually sort of monotone to hearing people too. 😉 There was an interpreter there also but she was very ASL. Even though I spend a lot of time around deaf people, most of us aren’t that ASL. We’re more CASE/SEE2/oral so that threw me off at first (had to switch my thinking process to ASL) but she was a good interpreter. Of course any sane interpreter will not sign all 700-800 names and I was too far away from the speaker to lipread. However, I did notice that once they got through all the Masters and were ready to start on the PhD people…it sounded like they were saying something else in addition to the names…turns out they were saying the adviser’s names also. No clue what they were saying of course, but just to be able to pick out that they were saying something else too instead of it all running together was nice.

I did jump a few inches out of my seat when someone whistled during the ceremony. Speaking of whistling. I have this game on my iPod and I knew there was something different about the background music but I couldn’t figure it out. I knew there were instruments and that no one was singing….but there was something else there that I couldn’t figure out. I finally asked someone to listen to it. Turns out it was someone whistling a tune with instruments in the background. That’s something I would not have noticed with hearing aids. I would have just assumed it was only instruments.

I was thinking about this the other day but being around only hearing people for the last few days made me think about this more. This is the first time in my life I’ve ever had this big of a group of deaf friends. I’ve never really had more than 2-3 good deaf friends at a time if I even had any. I’ve always had more hearing friends than deaf. It’s been interesting having only deaf friends here in Kansas compared to all hearing friends in New York (graduate school). My lipreading skills really improved while I was in New York and I do miss being around hearing people. I know that I need both deaf and hearing friends. When I was in New York I was constantly being challenged to utilize my lipreading and auditory skills w/hearing aids and now I’m not being challenged as much. I did consider getting a CI while I was in graduate school in New York. Looking back, I think that would have been a bad idea with all the graduate school stress and without the support that I’ve been constantly getting from my deaf friends here especially since several of them are CI users also.

Now that I can really tolerate sounds and am starting to recognize sounds better…I think it’s time I get back into the hearing world more in order to get the maximum benefits I can get from the CI. It’s time to find that balance between both the deaf and hearing worlds. I always seem to go from one extreme to the other when all I need is a balance.