Then where do I fit?

I am on a number of different groups… some Deaf groups, some deaf groups. Some CI groups, some ASL groups… I surround myself with different types of people, and to me I think that is a wonderful thing, seeing different opinions, and different thoughts, nothing then is allowed to be dogma, but I am allowed to see facts for facts.

 

Recently… I’ve been thinking about leaving one of the groups, why? Because it seems their main goal is to end ALL cochlear implant surgeries, they are telling lies about how getting a CI isn’t a choice for anyone, that it is a death sentence, that Deaf people who choose to get a CI will be ostracized from the Deaf Community, that you will no longer be Deaf, or that getting a CI is promoting Audism… none of this I agree with.

 

Let me get a few facts out there (that are already in this blog site, but still) 1. I am Deaf, 2. I use ASL as my main Language, 3. I have a CI 4. I HAVE NOT been ostracized from the Deaf Community, nor has anyone I know who has chosen to get a CI been.

Now… there are a few things I do agree with in the most recent post that has gotten me upset… 1. CI’s should not be done on infants, 2. all deaf children should have sign language (ASL if in the USA, or the countries sign language), 3. Being Deaf should be accepted as a natural state, 4. CI’s are not a “fix”, 5. Before getting a CI, you should talk with MANY people who have CI’s (this was from a comment, not the original post)

 

Responses.

  1. if a child wants a CI, let them choose a CI when they are old enough to understand what it means to get one.
  2. Sign language is the natural language of deaf children, and should be taught first. Speech is not the important thing, language is. If you have a solid base for language, then you will be able to learn other languages easier (including the spoken forms of language).
  3. Deaf is natural, there is nothing wrong with being deaf, it doesn’t matter if it is a deaf human, if it is a deaf cat, or if it is a deaf Dalmatian (more on that to come).  It is a natural state of being, we have multiple senses for a reason, so we are not relying on only one.
  4. A CI will not “fix” hearing. For one thing, there is nothing wrong with being Deaf… see #3… a CI may or may not improve the simulation of hearing, give a sense of hearing. A CI should not be seen as a fix for a deaf person, because we are not broken. It will not give a person normal hearing, even if a sound booth test shows near normal results with a CI, because the world is not a sound booth.
  5. Before anyone chooses to get a CI, they should talk with many people who have had them, be told the good, the bad, as well as the ugly. In some cases, it doesn’t work, in some cases it works beautifully. But before you decide, talk to as many people as possible, with all different brands (no brand is honestly better than any other), with all different stories. Don’t count out the person who was a teen when she was implanted and suffered severe vertigo from it, or the person who was born deaf and can’t understand anything but environmental noise, or the girl who was implanted as a child, but can’t have it turned up to where she gets speech sounds because of facial stim, or the adult who chose a CI after progressive loss, and is doing great. Don’t count a story out, because you NEED to know the truth, things happen, its not always successful, bad things can happen, but so can good things. CI’s, just like life in general, is never black and white….

 

So, after reading these things, it gets me wondering, if, because I have chosen, not only once, but twice, to receive a CI, and if the following is true: “if it does work, you are likely to be ostracized by Deafs (you have expressed that being Deaf is bad, and want to distance from it)” , where does that leave me? Am I back in that middle ground between Deaf and Hearing where I use to be before I found my Deaf Community? Do I fit anywhere? I know the answers to these questions… because no matter what I am still Deaf, I still use ASL, and my Deaf Community has not turned their backs on me, and I know they never will, they are my family, just as much as blood makes a family.

Now I’m on another group, and I see so often pictures of children, babies even, having CI surgeries, and their parents or grandparents talking about how they are now hearing (LIE… GREAT BIG LIE) and how they don’t need ASL, or how they won’t respond to their child if they use ASL… or how they only use ASL at bath times (a sign here or there)… and that… it breaks my heart for so many reasons.

These children will never be hearing, they are deaf, and nothing will change that. ASL is still needed, because it doesn’t require batteries, it will never break, it is always accessible (even to a deaf blind child), noise doesn’t interfere with it… it is the only 100% accessible language to a child. I’m in no way pro infant or child implantation, I believe it is a very personal decision that must be made individually, and a child, especially a baby, has NO way of telling you if it is too loud, if they are feeling funny things (stimulation that can be very uncomfortable, even to the point of pain)… I think the person should make the decision, and it MUST be an informed decision. Before I got my first CI I talked with MANY adults who have CI’s, I read blogs, I have friends who’s CI’s failed, who are candidates, but choose not to get one, who regretted getting their CI, those who wanted explants (removing the CI), and those who were pleased with it. I did my homework, I actually watched a CI surgery (I must find that link), and I think that is something that is VERY important, I knew exactly what was going to be happening when I was under the knife, I knew what to expect (mostly) when I woke up from anesthesia, and I knew there was a very real possibility that it wouldn’t work, and that I would never be able to understand speech. Honestly, if you look back, my audiologist told me I was underestimating myself, by saying I wasn’t expecting to understand speech, I just wanted to be able to hear (not necessarily understand) music again, and know if someone was talking… my CI has exceeded my expectations yes.

ASL also, it isn’t something that is only needed for bath times, in fact, if you use it only at bath time… I think there are issues there… it gives mixed signals to the child, especially if the child’s first language is ASL… they may have a hard time telling when its appropriate and when it isn’t (I have a lengthy explanation of that here)

So… I also wonder… do I fit in this group? I can share my CI joy, and I love that… but do I fit in with the people who feel their deafness is something to be ashamed of, or that if you can’t hear something you are missing out? I don’t know… I am not, and will not be ashamed of being Deaf, and I know you can have a full life without hearing a thing… I’m starting to wonder… where do I fit… there are only a few places I know for sure. In my loves arms, in the Deaf community, and with my family (most of it anyways), and this… this I am ok with. I don’t have to fit with the Radical Deafies, nor with the Oral deafies, and certainty not with the audist deafs… but their stories I also shouldn’t count out…  but I shouldn’t take anything at face value either…

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Auditory Rehab, Angel Sound Style

So… I’m not doing any auditory Rehab with my audiologist… for a few reason. I’m doing it on my own.

I’ve been using a few different programs. The first one I used was “Sound and Way Beyond”  (SWB) from Cochlear Americas, who makes my CI. You use to be able to download a demo… but since they have switched to Angel Sound, the demo seems to have disappeared.

what SWB looks like can be found here

I have also used clix which is from Advanced Bionics (I think)

the newest, and so far, the best one I have found is Angel Sound… it has so many more features to it than either clix training or SWB. which looks very similar to SWB, but again, has more features. One of which I am downloading now and will update when I have tried it.

Look at the pictures here

 

One thing that I really like with Angel Sound, although I’m not sure how correct it is, they allow you to check to see your auditory thresholds, so the DB levels that you are hearing at. The one I did a few days ago looked like this.

I think Angel Sound is good for anyone who is interested in knowing where they stand with their speech comprehension, at least to get an idea of how they hear. There are advanced modules… but I’m scared to look at those right now… baby steps… when I become more advanced, I will do the more advanced modules… but I’m still a baby listener.

Why the focus on speech?

When you talk to a new parent… they are looking forward to the many firsts the child has. Their first night sleeping all night, the first steps,  the first smile that isn’t because of gas, the first time they laugh,  and their first words… when hearing parents find out their children are deaf, they mourn the “loss” of the “normal” child they would have had… instead of celebrating the child they do have. Why?

 

Partially, I think it is because they had all these expectations for their child. When asked what they want most, many soon to be parents say a healthy child… why is deafness not seen as still being healthy? This is the medical communities fault, the audist perspectives many people have, even without realizing it.

 

Watch the words that are used… common words… but think about their connotations, the meanings behind them, and what they tell parents.

When a child is diagnosed as having a hearing loss, it is a scary time for parents. They are told their child will need speech therapy, there child has been diagnosed with something. Parents are told “I’m sorry” as if their new born child has something wrong with them. Those words, especially at a doctors office, are generally used for very bad, life threatening diseases.

 

These words have negative impacts on the child as well as the parent… the parents sense of joy at seeing their child for the first time is overwhelmed by this scary thing the doctors have said. Their child may never talk, they will never hear music, they will be left out. There is too much focus on what the child can’t do, rather than what they CAN do.

 

The following video can explain it better than I can…

 

There is so much negativity in our world, new parents shouldn’t have to feel this. They should be allowed to be happy they have just brought, or adopted, a new child into this world, into their family. The child may be deaf, or hard of hearing, but that doesn’t mean the child shouldn’t have EVERY opportunity to succeed… and with this, sign language, despite other options, such as hearing aids or Cochlear Implants is ESSENTIAL for the growth of a deaf child. Speaking when you can’t hear the words properly is frustrating… and yet, so many parents choose the oral only rout for their child? Why? The medical community is telling them this is the best option, if they want their child to be “normal”.  There are many other examples… but speech is just a modality of language, and too much time is spent focusing on speech when language development is not truly equivalent to speech development.

This video explains some of it…

 

Don’t get me wrong, am I happy I can speak, yes. It has helped me, especially when I didn’t know ASL, I could get my feelings out in some ways… but writing has always been easier for me. Why? Because I could see the language, I didn’t have to think about it as much, I didn’t have to think about how the words were pronounced, but I could just let it all out. Writing has always been my way into the world around me, I would write poetry, music, letters, sometimes I would just rip them up… but I could still get it out. But spoken language ISN’T a language, it is a modality of a language.

 

Children younger than 10, 5, 3, even 1 are being put into speech therapy, into AVT (Auditory Verbal Therapy) not to improve their LANGUAGE, but their SPEECH. There are “toys” out there to help a child learn where they went wrong in speaking, but this doesn’t equal having language.

why is this the image so many people want to see

rather than…

 

or this?

why is this what we focus on

rather than this?

because parents want their child to be normal… and to be normal, is the same thing as being hearing… and that is just a sad, sad thought. That this is considered more normal

than

Is it so important to hear your child speak rather than see their thoughts? Is it so important to hear your child tell you I love you mommy/daddy, rather than see them sign it? I think we should focus on language before it is too late, rather than words.

Expectations, do I have any? Yes…

Ok… so like I said in my last post, tomorrow is my Activation for my Cochlear Implant. I have been told by people not to have any expectations, or I will be disappointed, or expect the worst, hope for the best.

First of all, I don’t think I can’t have any expectations for tomorrow, life is full of expectations. I expect that I will have more clients at work today, and the reality is, I most likely will. I expect that when I get home at some point I will go to sleep, this also, is true. I expected to have more pain from my surgery, this thankfully was not true. I expected my Deaf community would stick by me on my decision to get a CI, this for the most part, has held true. I expect that I will wake up tomorrow, I really hope this is true. Life is a game of expectations, and there is no way I can’t have any expectations, it is a natural part of living.

Now for expect the worst and hope for the best… I don’t know that I can do this either. what would expecting the worst actually be? This depends on who is talking… it could be a total failure of my implant, meaning there is no stimulation happening, it could be severe facial twitching, it could be pain… is this really what I want to expect? NO. I don’t want to expect I have gone through this surgery for pain, for facial twitching, for a complete and utter failure of the implant… I expect… I expect to hear SOMETHING.

Hoping for the best… would that mean hearing like a person with “normal” hearing? (this will NEVER happen, I am Deaf and proud of it). Would it mean understanding words right away? (I also doubt this will happen) Would it mean being able to tell the difference between shoe and Ice Cream? This would be nice, and something I can not do with my hearing aid.

So… what are my expectations for tomorrow? Honestly my expectations for this whole CI journey are very low, I have been told this by my audiologist, my friends who have CI’s, my parents, my family… but I have a low expectation for this whole journey, let alone “A-day”. My expectation for tomorrow… for things to be very confusing and overwhelming. I expect to hear something, and if that is just “beep beep beep” that will be fine. It means that my brain is getting auditory stimulation, which was the whole point of this surgery, of this journey, of sometimes feeling like I was betraying who I was… to get auditory stimulation. I expect I will be so overwhelmed I may want to, and perhaps cry, will they be tears of joy? maybe, or will they be tears of oh god… what did I do to myself? maybe. I have to remember something, no matter what happens, this journey will make me a stronger person.

I expect I will have to do a lot of auditory “rehabilitation” to get to a point that I can understand words, to understand the meanings coming from the implant. I hope that I won’t have to go in to actually do rehab, but that I can do it on my own, with tools like Sound and Way Beyond, The Listening Room, Bridge, listening to audio books and reading along with them, listening to presidential speeches and reading the transcription, the HOPE site From Cochlear, telephone with confidence program… and just every day listening.

I expect that although one big reason for me to get the CI was music, over the last few years music got to the point from where I was feeling it and hearing it, to where it was just a bunch of gobbledygook, noise that made no meaningful impression on me, where I was only feeling it (don’t get me wrong, I love the feel of music) I would just like to be able to understand it again… understand the melody, understand the meaning and feel the feeling behind it. I expect, at first it will still just be… gobbledygook… at first it will just be, annoying, but hopefully with some work, I will be able to understand it again, and enjoy it again. Cochlear (sorry if this is very heavily cochlear based, they make my CI and I’m not entirely sure what other manufacturers have to offer) offers something called Hope Notes, which is suppose to help me understand the differences between different instruments, different pitches and so forth. So this will be something I will be using a lot. I would love to be able to get to the point where I can know if my guitar is in tune or not, where I can play it and hear it, where I can… enjoy music.

But for tomorrow… what are my expectations… to hear something, to be annoyed, and… possibly be disheartened. I know this journey is far from over (I have promised my family that even if I don’t like it, I will keep wearing it on a regular basis for a year, so I know if I actually get any benefit from it) and it will be work, and I will be tired… but my journey has just started. I am not looking to be seen as hearing, honestly, I am very proud to be able to call myself Deaf, I love my Deaf community, and I don’t know what I would do without them… but there are so many things about my life that revolve in the hearing world vs the Deaf world… my job for one, and that is another reason why I got my CI. I hope that eventually I will be able to understand speech to the point I don’t have to lipread as much, and I hope it will help me at work. Particularly with my clients who do not move their lips, or have facial hair. Enough for now. Weds there will be an update, I know tomorrow I will be too tired.

One week out.

Ok, so I am one week out from surgery today, and 6 days until it gets turned on. I have been at work 2 days since surgery, and have today off. It seems much longer than a week, or technically just a little under by a few hours, since I got out of surgery. I feel better than a week, better then I expected… but there are still times when I remember, when I am forced to remember, its only been a week. I think in the past week, my head really has made some progress…

24 hours (right after I removed the bandages) on the left, and 1 week (today) on the right.

it is much less red, and much less inflamed. Although my head is still very bruised. I had been wondering what the yellow was on my head, thinking it had something to do with iodine, but now I realize, it is actually a bruise.

In this last week, what have I learned?

1. when I am stressed or healing, or looking toward something (with anticipation), I apparently talk in my sleep. The last two nights I have been saying strings of curse words at night, my poor love thinks that its towards her.

2. I don’t sleep very well when I can’t toss and turn. I really would love to be able to sleep on my right side, but I can’t. it hurts to do so. I normally turn over a few times in the night, and only being able to turn onto the left side doesn’t lead towards good sleeping, or a neck that doesn’t hurt.

3. I am so thankful that I have the email of people at my CI office. It seems every day I have had a question of some sort. Some of it has been freaking out (like my sneezing incident yesterday), some of it has been what is coming in my kit (they still haven’t given me a 100% answer), some of it has been just needing to talk to someone who has dealt with this before.

4. I knew I worry… but I worry more than I expected. I worry about the little things… like thinking that I am going to damage something if I sneeze, or that I won’t have everything that I need for my processor, or the weird bump at the base of my neck, or the yellow tinge to my skin when I didn’t know it was a bruise.

5. I am getting excited… but I also am very scared. I haven’t actually heard things in… quite a while, what is it going to be like? Is it going to be loud? am I going to like it? am I going to understand anyone? How long will it take? My office is still getting me an interpreter for my post op visit, but for the actual activation, the interpreter will be there, but should be taking a step back to see how much I understand. If I don’t understand, or if I freak out (which I am prone to do when I don’t understand) the interpreter will take a step up and help me out. With the actual post op with the surgeon, the interpreter will be my friend thankfully. Even though I will be turned on at that point, I want and need to be able to understand everything. We will also find out if I have to do much auditory rehab (I’m sure I will need to, but maybe hopefully not speech therapy!!).

6. Resting, sleeping is very important after surgery. Even a week later, I still get very tired easily.

Speaking of sleep, I’m going to take a nap I think. Wonderful thing I can do on my day off!

Yesterdays news

Ok so I had an interesting extensive failed long winded audiogram yesterday at the CI clinic. I sat there, knowing I would never rarely press the button to say I heard a sound… but wanted to see what would come of it. It was the first time in many years I had headphones on instead of the little yellow foam ear inserts for an audiogram… and I’m not sure if that made a difference… but oddly, where as before I could feel that sound was being pumped into my head… this time I couldn’t… there was not tickling of the ear drum, there was no odd vibration in my inner ear, nothing. This time, I just sat there… being dumbfounded by the utter lack of noise. I am use to pressing the button only on my left side… but this time (thank you progrssive loss) I didn’t press it once.


Then we went to the aided test… I thought I would press the button more, and though I was right when compairing it to my air conduction test… it wasn’t much. My partner was in the booth with me when I was tested, which we soon found out was a mistake… they started the test… and I just sat there… looking at the intern who was testing me. The intern started to laugh, and I looked behind me… and this was similar to the site that I saw… even with her ear plugs, and me having my aids on… this was the site that I saw… she had to leave the booth.

Then we did the speech discrimination and sentence tests… what a wonderful failure deaf person I was… I didn’t get a single one right with sound alone… I wouldn’t have even known that she was talking if she didn’t have a piece of paper over her mouth… so then… we did it with lipreading… and oh that was interesting… wanting to get them correct… and knowing I was accountable for them… she spoke, I read her lips, I asked her to repeat, sometimes many times… sometimes I got it on the first shot… but mostly, I needed her to repeat and give me other visual clues… it was interesting to say the least….

Before the auidological evaluation… we had a CI counseling session, in which I was told my expectations were too low. I’m not positive how much I trust this… but in a way it could be nice if she was right… My expectation was just to have more hearing than I do now… to be able to understand when there is music playing, and hopefully… be able to enjoy at least some of it… she said she expects me to be able to, within a year after implantation… to get 85-90% of sentences correct without having to lipread. She did warn me it will take a lot of work, and that I will not be happy I got it for the first few months after activation. But my decision is made… I am going to do it, I am going to get a CI, and my brand choice has been made up too… after a lot of thought, a lot of research, and finally, feeling the different processors and implants, I am going with Cochlear Americas N5.

I had hoped that feeling the different processors, how they felt behind my ear, would lead me to the correct decision, and I think it has. I felt that the Cochlear one was more solid, less flimsy and felt more natural behind my ear. The audiologist also informed me that she has seen the best reliability with the currently available implants for Cochlear. I know they had some recalls not too long back, but she explained to me what the recalls were, and why they happend. As well as the only MAJOR difference between the two implants was the size (which I honestly couldn’t see a difference in size). The one that was recalled was just a hair thinner than the other. I also got a huge 3 ring binder with information to look over, most of which I have already seen, read or understood. She did ease my mind quite a bit… I had been told by a previous interpreter (who is no longer working as an interpreter) that the bone had to be re-drilled every so often… and so forth… that she said was utterly untrue.

I asked questions for over an hour, she got some medical history (apparently I am the most organized patient they have had… I took a leaf out of the mom of a HoH, special needs [has severe reflux and apnea] book, and made a book of my own…) so I was able to hand over the last 3 years of audiograms to her… and she was amazed at the differences (if I get the chance, I will post the chart) and they said… I will be getting a CI after all… I just need to wait for insurance to approve my CT scan, get that scheduled, see the surgeon, schedule surgery (and get the time off from work), have the surgery, get activated, and start learning to listen… all before school starts in August?

Ok, minus the having to actually learn to listen before school starts… thankfully I have an amazing school, who didn’t even batt an eye when I told them I needed interpreters for class… they just said ok, thats fine! And I know it will not change even when I have my CI, I will still use my interpreters, they are so very helpful for me, I don’t know how I could do this without them. I’m not sure if I will use my CI in class or not next semester… I’m not sure if it will be distracting or not. I did not normally use my Hearing Aids in class last semester, being able to understand everything through ASL and nothing through my hearing. I will have to see how it goes… I still have time… but July (when the told me the surgery will most likely be) is only 2 months away… and feels like it could be tomorrow… (thankfully it isn’t)… I don’t know I could deal with that…

oh one last piece of news… the Audiologist said that I may need more speech therapy… to make my voice a little more intelligible, as well as help me (maybe) learn to understand the new type of signal my brain is getting from the implant… am I excited about this… no… but at least I know… in her words “I am the boss” (meaning me) so that if I decide I don’t want to keep going with it… I don’t have to!

so that is my news… I will be getting a CI… and for the most part, I feel good about it… having surgery is never an easy thing to decide, especially if it isn’t a life threatening condition (being Deaf isn’t) but I’m thinking it may help me out at work… and that is what I am looking forward to (and being able to hear music again!!!). and if I don’t like it… I can just not use it right?