Returning to School Part 1: Cued Speech & Accurate Sound Representation

So, while I wear my implant all the time, I hear but not HEAR- I only truly understand the environmental noises. And while that is wildly useful (Some noises I've noticed in this past month: oven timer beeping, the door opening signaling the arrival of someone, being able to follow voices in my class discussion) I want MORE.

Classes loomed over me and with it, a certain sadness. It had everything to do with the monotonous repetition of sameness in how I process information. That is to say, I use sign language interpreters. I wanted it to be different yet I had known it wouldn't be this quarter.

I had a CART transcriber for my first two classes of chemistry. CART stands for Communication Access Realtime Translation. Basically, someone sits next to me with a special typewriter that is connected to a small laptop, and allows them to type down everything that's being said. It was very fascinating to see it in practice since she did indeed capture EVERYTHING that was being said by the professor (although not actually in realtime, more like a 7 second lag) It felt like the human dimension was being taken away although I loved the direct verbatim style, because I am wildly fond of reading and absorb well that way.

So, she asked if I liked it and said she'd love to transcribe for me the rest of the quarter. I replied that I liked it. I didn't say anything about her transcribing, though. I wish I could have both- the human interaction and the amazing accuracy without the paraphasing that can sometimes occur with interpreters.

An idea began simmering at the edge of my mind.... Since I can access the SOUNDS of language with my implant, why should I have to watch sign language interpreters if there's OTHER interpreters out there who can represent what I'm hearing more accurately? With sign language there's a slight lag as well as the problematic tendency of people using words that aren't present in sign language, so they get converted to their simplistic versions. The only example I can think of doesn't have to do with vocabulary but rather with English cliches, but I hope you will get the idea. If someone were to say the phrase, "elbow grease" it'd get signed as "hard work."

There is a way to match up signs with sounds other than SEE (Signing Exact English). It's called cued speech. Cued speech is the use of 8 handshapes to represent consonant sounds and 4 handshapes to represent vowels.

It's not a language, but rather a way of representing what's already there. Cued speech is universal, which also came of great interest to me. You can cue in Spanish, even cue a Southern dialect with accurate representation.

I started researching with a zest and emailing people. I asked my school if it was possible to get a cued speech interpreter. The response was:

"There is *one* cued speech interpreter in Washington State (that I know of). She lives in the Seattle area. We might be able to get her for future quarters.

This is something you'd want to discuss with us though."

I thought, "Hmm... so I WOULD be able to get a cued speech transliterator if I wanted to. Let's go ahead and learn it then!"

How does this apply to those of you with cochlear implants? Well, it can help with better lipreading, more accurate matching-up of sounds with words and maintain or improve speech. For me, I wish 110% to learn speech better so I can communicate easier with others. I also really want to redirect my brain to the IMPLANT, the auditory part of things instead of the visual. I found a site at http://www.blogger.com/www.cuedspeech.com that said:

Speech
If development of speech is desired, Cued Speech can support speech and articulation skills by:

• focusing attention on the mouth
• reinforcing the pattern of phonemes within a word or phrase
• identifying the speech sound(s) and syllables being targeted
• being a motoric reminder and trigger of speech production
• integrating sound, sight, and motor aspects to make learning more fun!

So, knowing that HSDC teaches cued speech to infants, I emailed them asking about if they knew where I could learn. Turns out they have an upcoming workshop for cued speech October 17 and 18th!! Both are all day but only $10 for me. Such a good deal because I know there are people who are professionals who will have to pay $120 for the same workshop. I'm going for sure. It will be easier learning from someone instead of going through it myself in a disorganized manner.
I worry, What if I am really terrible at cueing? What if I can't remember any of it? What if I fall in love with cueing? Even, what if I don't and this means I've exhausted all the possible options for language out there? Will it be hard to teach people close to me cued speech?

Those things don't matter yet and I know that. But I'm REALLY hoping I won't be bad at cueing and it'll be relatively easy to learn, needless to say!

The downfall is that there are not many cuers in this area. Cueing is actually practically unheard of around here. I was surprised to find that my mom, who works with deaf people, hadn't heard of cued speech.

I look forward to coming back and discussing how the workshop went, if it helps my speech in the long run, and seeing if I end up using cued speech in the future for classes or even for daily interaction!!

In the meantime, here is more information on cued speech. I encourage you to leave comments & thoughts.

Cued Speech Association Information Page
Short 10 Minute Film (With sign language interpretation, captions, and spoken English)

CPR Class

I got my CPR & First Aid certificate today! I'm glad. The class was a bit annoying though, since it could have been compressed into 3 hours instead of the 9 hours it took! I finally just said, "Can I just take the test? I know this material already and don't want to review it." So they let me leave 45 minutes early and take the test but then I had to stay and wait! I wished I had just asked about taking it early earlier than I did! I got 100% though on both the written and the CPR skills test so I was really excited because it helped to know I CAN help someone if they ever need it.

This was something I wrote on my phone during a break.

We speak in nuances buried upon nuances. We never say something simply even if we believe we just said a simple statement.

We laughingly say, "You got me." Or we say with a note of awe, eyebrows raised slightly, "The sunset was beautiful." Rarely do we say something without at least betraying our emotions.

Yesterday, I was told I had an expressive face by a classmate. I didn't think that I did but I guess I do? And apparently, it helps classmates understand what my "verbal" tone is when the interpreters don't get it through aptly enough at times (even though their voice-interpreting may have been 100% correct.) How much do I betray that I am unaware of?

The class was held at the Hearing, Speech, and Deafness Center (HSDC) in Seattle. This was also where I went to the program PIP (parent-infant-program) with my parents as a baby. I mentioned that to someone who worked there (Karen?) and she gasped. She then excitedly led me through the remodeled building to a room I had a sensation of familiarity in. On the walls hung pictures and one of the pictures showed the 1989 PIP people. There I was, sitting on my father's lap. I was surprised to see they STILL had pictures from 19 years ago. Karen asked me if we could talk later, since she was interested in finding out what happened to the kids from PIP for follow-up studies. I asked how many children in the PIP program had cochlear implants or if those kids went to Children's for therapy and as a result didn't go to PIP. She said two children in the program had implants but were learning ASL (PIP teaches people ASL and assists with early-intervention). The rest weren't implanted. Cued speech (a system of representing a language's sounds/phonemes visually) was also occasionally taught there in addition to the various types of sign.

This struck a cord in me, thinking of children who could be speaking and being able to keep up with friends in groups in the future, who weren't. So later, I called the center and acquired the phone number and email of the director of PIP. I emailed her asking if I could speak to the parents there about my experiences growing up deaf, things that helped me, and my opinion of having a cochlear implant. I REALLY hope they allow me to speak there and this is definitely something I will pursue because I feel it is SO essential that those parents get all possible perspectives and understand how much a cochlear implant does but also how sign language is beneficial. I do understand it's a sticky situation because there is a lot of controversy and the fact these parents are already in PIP kind of suggests the route they're considering. I don't claim to know all the answers nor would I presume to, but I really think cochlear implants are THE way to fully ensure your child is involved in the world around them.

Cochlear Implants & Deaf Culture

How hectic it's been lately! School started today. I found that while I know where all the buildings are now and can even direct someone to a building easily, managing my time isn't quite as easy. Sigh.

I know someone who is getting their wisdom teeth out and that person was talking about how they were afraid. I sympathetized but felt bad for the immediate reaction I had in my mind which was this:

Afraid of a simple dental procedure? That is NOTHING compared to consenting to getting your head drilled into, for an implant you hope you'll like but which you really have little clue as to what to expect and where you received 10 stitches and two permanent bumps on your head.

I find that after receiving the CI, I am less worried about other procedures that I or others might have done to us. I also find that the CI has empowered me in other odd ways. I'm more confident about my choice to make decisions because I made what is one of the biggest decisions of my life and I haven't regretted it for a single moment. Some people thought I would but I haven't. Like I say, "The only thing I regret is not having done it sooner."

I was texting with Tess, who I've known since I was 6 months old and who is profoundly deaf. She uses interpreters in school when she goes to school. She said, "I still can't believe you got an implant. I wouldn't have!"

I really can't relate to that sentiment at all, which simultaneously saddened and excited me. Saddened because it is yet another distinction of how I am far removed from the "deaf culture" and excited because I really am that much different than the usual "mindset." I don't mean this in a bad way at all. I am an advocate of sign language (for babies as well!) but I am not an advocate of it when it is used alone.

Many deaf people seem more receptive to the CI than in the 90s. When I tell a Deaf person I have an implant, they immediately ask, "Does it work?" then "Doesn't the constant sound drive you crazy?"

Then of course I get high-spirited and tell them of how much the CI has changed my life and how happy I am I have it. Then the usual reaction I get is one of interested listening and then a statement of how it wouldn't benefit them but it's good I like it. At least they aren't shutting me out. I just constantly wonder, "Do I REALLY think that differently? Why aren't more prelingually deaf people getting implants or at least as curious as I was that it bothers them everyday wondering "What if"?"

There is a slang word that exists in culture today- "Oreo," signifying a black person who is white on the inside. There is actually also a sign in the deaf culture for a deaf person that thinks like a hearing person and is usually integrated in the culture. It is the sign for "hearing," but signed near the forehead to signify they are "hearing-in-their-mind." This person usually doesn't have much sense of deaf culture or chooses to live outside it.

I've been called "hearing-in-the-mind" and finally began identifying myself as "hearing-in-the-mind" when deaf people would ask me if I was deaf, hard of hearing, or hearing. It was ample enough to summarize why I sign in Exact English, why I write and read as well as I do, as well as to explain the fact I (wanted to and now have) an implant which makes me uniquely both deaf and hearing.

There is no word like this in hearing culture. I have to explain I can't understand speech yet, although I hear the fan whirring above us and their voice as they ask, perfectly. I have to explain I don't use ASL. It gets tiring explaining but even tiring when people automatically assume that I use ASL because I am deaf and I never get a chance to explain so I have to find a way to slip it in there somewhere.

I feel a constant worry when meeting new people who have taken ASL classes or who think they know things about deaf people, about making sure those people know I'm NOT in the deaf culture because I fear being grouped and as a result, assigned traits that I don't even possess.

But what is unfortunate is that I believe, in order to have people listen to you, they have to feel they can relate to you. (which is probably why Obama is so popular right now, as a side note!) I want to get through to the deaf population about the usefulness of cochlear implants and about other things they might not be huge fans of. I can personally switch over to following deaf culture and customs, to signing ASL if need be, but I can never truly give myself over to it.

I used to have some people criticize me greatly for that but it seems that the deaf culture and the hearing culture, over the years, have learned how to soften both their positions and find a more common ground. I'm glad to see that because there are advantages to BOTH so there's no reason to have just one if you can have the other as well.

Implants and water

So!! I'm finally back in Seattle which means it's a LOT easier to keep this updated. Just as well, because I have a feeling I'll have a lot to update with. :D Today is on IMPLANTS AND WATER- the all-too-well-known dilemma all implant users encounter, whether they use a body worn processor or a headpiece. The short of it is, we can go in water and our implants can't.

But before I get into that- I was thinking today about how being content is basically a state of mind. But at the same time, you can't really be content if you're not moving forward the way you want or if some aspect in your life isn't how you want it to be. The good thing is, we can usually always change it. I'm not entirely content with everything but I can honestly say that I am happy. And the things that I'm not content with (not enough speech classes, not being done with planning classes, etc) I am working to change asap.

I was also laying in bed the other day, thinking about my implant. I was thinking about how much I regret not having getting it sooner, but how well it's worked out having it NOW. I honestly love this little thing that sticks to my head, that gives me a world of sound I never had before.

While in Colorado, my sister and I were planning to go to this really fun ex-Six Flags park. But they have a water park there. So of course I started thinking about the food-sealer trick of sealing the implant and then using a water cap. I asked my mom to take me to a store where they would have a food sealer I could ask them to demonstrate (and in the process sealing my implant!) but she said no, flat out. Then she realized she had treated an adult like a child (am I really an adult? It felt strange to have my mom call me that, honestly). So she said "You can do whatever you want to, but don't come crying to me when your implant gets ruined. You'd be better off leaving it here."

I yelled at her, "Try going a day without hearing ANYTHING! You'd be crying after a hour" and fled to my room. (Some adult I am, haha) A hour later, my family found me there asleep with my implant in my hand. I was angry and just plain sad that perhaps, they couldn't see just how much hearing means to me.

It means enough that I'd be willing to go to a store, seal my implant, and wear a swimming cap the whole day if necessary. I don't even care when people stare at me, as they did in the shopping lines in Colorado. A small part of me dislikes it, obviously, and feels a twinge of self-consciousness but then I think about what my implant does for me and I stand prouder. I wear it so casually, the blue earpiece always sitting on my ear, and I never say anything about it. It hurts my ear a lot because it's a little heavier than a hearing aid and it presses on my nerves sometimes, but I don't say this. What would be the point? The point is, I can hear and I'm happy.

What ended up happening was I took the implant to the park.

The theatrics we put ourselves through-I was determined to bring it there. I had given up on the idea of wearing it in water because really, I wouldn't be missing out on any conversation thanks to my sister being wonderfully fluent in sign and being the only one there. But I did try putting my implant in a plastic bag earlier before the park, but couldn't find a swim cap and didn't want to risk it. It was a little harder to hear through the plastic bag, obviously, but it worked. It was just much quieter and I feared turning up the volume and maybe at one point it becoming crystal-clear, crystal-sharp and FLOODING me with noise.

I ended up having fun despite the utter silence. But it did make me a little sad- I was laying in the coolness of the water, and I saw a child laughing and laughing as the waves kept nearly pushing her over. I thought, "If I had my implant or hearing aid on, I would be able to hear that." This was some child I didn't even know and I cared about being able to hear her. What's odd is my brain expected the laughter SO much that I could hear a faint laughter- as if my brain was giving it sound. I knew it wasn't really hearing- it was the "voice."

But what's amazing is I NEVER had the "voice" in my head growing up. What I thought in was sign, or the SENSATION of my lips moving, or sometimes a mouth as if I were lipreading. I have little to no auditory memory. Yet, my brain is supplying a voice now. When I scroll through my IPod without the direct connect, I HEAR the tapping it makes even though there is no sound. That was probably the most direct, clear "voice"/sound my brain ever recalled. I was surprised but what's funny is I find that sound annoying! (I love it in a way though, if just because I can hear it.)


But I realized beforehand, as I did with the water, that the roller coasters would be a problem, wouldn't they? So before my mom drove us, I ran into the house and grabbed a big roll of duct tape. They all asked what it was for and as a reply, I ripped a piece of the duct tape, folded it inside out so the sticky parts were on the outside, and put the tape on my implant's earpiece. In short, I taped the implant to my head.... with duct tape!!! You can see a little bit of the tape if you look closely at the picture. My mom groaned but said nothing. My stepdad chuckled. My sister rolled her eyes and said, "You're just really dramatic, you know that?" I smiled in anticipation of being able to hear on the roller coasters.

When we got there, my sister and I ran for the biggest coaster in the park. We got on the ride and swung our legs until the ride began. I heard the announcer speak, the machinery, the -click- of the restraints, and finally the loudness of the ride starting. I checked to see that my implant was secure, and it was fine- UNTIL the loop-de-loop! The magnet (circular part) fell off because my head hit the side of the seat lightly. Then I felt the tape peeling off. Oh no!!! So I clapped my hand to my head, and held the implant there throughout the loop-de-loop. The split second of silence then the sudden shrieking noise of the roller coaster when the magnet was put back on was ridiculous! I pulled it off, the tape's friction stinging my skin a bit. It really had worked pretty well- until bumping it or until the magnet came off! So for the rest of the day, I took off the implant and put it in my pack whenever we were about to ride a roller coaster. Basically, I started to only use my hearing aid. The dimension lost was really disappointing but losing my implant would be WORSE!

My suggestion for amusement parks/roller coasters is to wear a swim cap that's tight enough to hold the implant for roller coasters, or taking it off before you're going on the ride. But put it in a big pack and bring a plastic bag or something to hold your implant in so it doesn't just get dropped in your backpack! As for water- I wouldn't take the risk of sealing it unless it was your spare implant and you had tried it out already in a low-water environment like the shower before actually IMMERSING it. I might try the food sealer trick (search youtube for it) in the shower sometime to see if it works, AFTER testing if the implant even works through the bag, but I don't really swim much in the upcoming seasons, only summer, so I'm not too worried about it.

Rain- the implant holds up VERY well in the rain and I appreciate that. (Especially since I live in Seattle!!) I'm not worried about getting it wet like with hearing aids. It continues to work well! But as a precaution I still usually use a hood if it's raining hard but it looks like it's not entirely necessary! Obviously, it can't be submerged (showers, swimming, etc) but it's not often we spend time submerged! So in average living and wetness, the CI holds up GREAT. :)