Kat Reading

Kat Reading

Sunday, August 29, 2010

An explanation

I want to clarify some issues that could arise about my last two posts. If you aren't familiar with CI's you could misunderstand.

First, Miss Kat WANTED her second CI. She has been begging for it for almost a year. She has been excited and looking forward to it for a long time.

Second, when a person is newly implanted it sounds weird. As your brain adjusts, the sound gets better. The first time Miss Kat put her new implant on all she could hear was beeping. She found it frustrating because she is used to a better quality signal, her OLD implant. Just in the last 5 days she has improved from hearing only beeps to being able to recognize a few simple words. She is frustrated because she wants to hear well, right now, and she is disappointed.

Third, everything seems loud to her right now. Objectively, it isn't. Her MAP is set waaaaaayyyyy lower on her new side vs the old side, but because that nerve hasn't had good stimulation for some time, it feels loud to her. The longer she uses the implant, the better the nerve and her brain will be at interpreting the signal, the more normal things will loud.

Last, pain....she isn't in pain. The shock of putting her CI on first thing in the morning isn't painful exactly...I have heard CI users compare it to walking from a dark room into florescent lights. It is shocking, and uncomfortable, but only lasts a minute. When she was first activated with the old CI, she was uncomfortable first thing in the morning as well, but it went away within a week or so. We expect that will happen again this time.

Once her CI is on, she wears it just fine. She doesn't take it off, and it doesn't bother her (except when she wear it alone, but that is because she can't understand speech with it yet, and she finds that annoying.)

Miss Kat needs to wear her CI to get it to work. The more she wears it, the better it will become, and the more she will like it. It doesn't happen overnight. It took nearly 2 years for her to get to the place she is with her first CI, and it will take that long this time as well.

I understand that not all of the readers of my blog are familiar with these aspects of cochlear implants, so I thought I would explain things so they would be clearer. I thought it was important to be honest, so that other families would know that things aren't always perfect, but that even in the dark moments, things will get better. If you have a question, ask it in the comments and I will make sure to answer.

26 comments:

Dan Connell said...

Well said, Miss Kat's Mom!

What you wrote is exactly my experience; first as a uni, then as a bi-lateral implantee.

And, for non-implantee folks... as cliche as it sounds (no pun intended) you really do have to be a CI implantee to fully grasp and appreciate the experience of going from zero sound to a fully functional mapping in one second or less. It's not painful, but it can be a shock to your system unless you are used to it.

Ever have a bucket of ice water thrown on you? It's way beyond that (heh heh).

...dan...

mishkazena said...

How convenient. You decided some of us don't understand how cochlear implants work, therefore you dismissed us. Well, you have no idea how familiar I am with cochlear implants. It's also obvious you aren't interested in hearing what other people have to say that you don't like. Some may have the knowledge, some may not, but they do have what you never experience: being deaf and being forced against our will to wear painful or uncomfortable devices. I've been reading your blog faithfully and I know the second implant is what Kat wanted for a long time. I'm not the ignoramus you may think I am. Contrary to what you claimed, she was in pain. This had been already acknowledged by other cochlear implant users in the comment section. Be Kat's mom. Advocate for her. Protect her. Most importantly, LISTEN to her. If she needs more time, let her do it at her pace. Make it easier on her to get used to the second device. Every child is different. I'm so out of here.

Miss Kat's Parents said...

I never called anyone ignorant, or anything like that. If you want to judge and be nasty, you can. I know that I have readers who are NOT familiar with CI's so I explained.

I do listen to my child. She does NOT say it hurts, she says it is "beeping" or that it is loud, not that it hurts.

If you have issues with someone forcing you do wear a device, talk to THEM, and work out your issues. This is not the place for that.

Do you notice that EVERY CI user has said that it is normal? They have all experienced it and said that if goes away. Do you care?

mishkazena said...

Crying,screaming, hitting and resisting are forms of communication, too. Crying all night, that is another communication. Communication doesn't have to be in words as you know.

If you think I have an issue with my parents forcing me to wear hearing aids, no, my parents never did that to me. However, I do have an issue seeing a child suffering needlessly in pain and the parents not responding to the cries of the child.

The CI wearers do experience the sensations, like sounds being uncomfortably loud in the mornings when the cochlear implants are activated. Hence the low setting at the beginning. However, they don't jerk the implant away from their heads, screaming, crying and hitting. Either the setting is too high, or the combination of both cochlear implants is making the second cochlear implant producing unnaturally loud noises. Why not let the child get used to it gradually, making the experiences less unpleasant and untraumatic?

What disturbs me is that you are ignoring the signals your child is sending to you. Apparently I'm wasting my time here.

mishkazena said...

Regardless, I still wish you and Miss Kat best of luck in her travels using the cochlear implants.

Dan Connell said...

@mishkazena said: "How convenient. You decided some of us don't understand how cochlear implants work, therefore you dismissed us. Well, you have no idea how familiar I am with cochlear implants" ...

My friend, if you knew half as much as you claim to know about CI's you would not call the outside part of the system an "implant" ... it's a processor, it is not an implant.

And, contrairy to what you may think, properly operating CI is not painful. Miss Kat seems to be just dandy-dan-fine after the unit is in operation. The turn on "rush" is normal and just takes some time to get used to. It is in no way, a painful event; and by pain, I mean pain as defined as a signal of present or impending tissue damage effected by a harmful stimulus.

And, do tell, just when did you pick up this marvelous ability to directly sense and diagnose the real or imagined pain of CI enabled child that you never met, laid eyes upon, or examined in a medical setting?

Just curious.

...dan...

Anonymous said...

Mishkazena, I can assure you what Miss Kat is going though is perfectly normal, I admire Miss Kat's mom for making this post so that everyone knows that CI is not easy as a lot of people would have thought. When I was first switched on it was very different to wearing hearing aids, I found it quite distressing and confusing as all I got was those series of beeps beeps, I could not understand one thing/or how it suppose to sound but as determined person I wanted it to work, with support of a lot of people, I preserved and now is happy CI user of 2 years. As Miss Kat is young person, she needs someone to encourage her in whatever ways to help her get used to it. It's NOT painful, It's NOT uncomfortable, just confusing, especially after years of hearing differently through different hearing device/s.

(e said...

I don't know if other hearing aid users agree, but I am always a little "shocked" when I put on my hearing aid in the morning, or after not wearing it for a long time. Things are super loud for a second. I sometimes have to adjust to the sounds. It lasts for only a few seconds. I am sure it is not as dramatic as a CI.

Thanks for posting this. Very interesting and informative. I'd really like to learn more about the CI. Reading other peoples' experiences with CIs is the best way to learn.

Thanks,

(e

Valhallian said...

I would have to agree with the anonymous commenter that Miss Kat's mom should be admired for posting this kind of stuff. What she is basically telling everyone is that the CI is not an overnight solution and that there are possible difficult ramifications that go along with it.

I never had a CI, but when I was a child, I absolutely hated the hearing aid and had my share of of temper tantrums with it, but I also am not mad at my parents for trying to make me wear it cuz I do understand that they felt they were trying to do the right thing. And they did listen to me over time cuz it became a point where I no longer had to wear the hearing aid.

Miss Kat's mom, huge kudos to you for posting this stuff as you are also educating many people on this topic.

Dianrez said...

As MZ said, the crying and screaming is communication that should be attended to. I can remember times of being forced or lied to to make me go through medical procedures as a child. This subtly damages the trust between parent and child that can last a lifetime.

This is not to say you're doing the same with your daughter, and your backing off a bit temporarily was the right thing to do. Sitting on her and forcing CI's on her as some parents have been advised to do would have been counterproductive.

No deaf child should be made to feel that failure to hear or to successfully use hearing devices makes him less worthy.

K.L. said...

Even a year and a half after activation, my daughter did not like the first few minutes of sound on her new side. Her audie made a special "start-up" map for her that was simply her normal map at a lower setting. She starts up on the low setting, then switches it when she is ready. Of course, she is older, so it is much easier to explain things, and for her to explain things. Good luck. Miss Kat should start getting better sound soon.

Anonymous said...

oh please. DianRez & MishkaZena, take a chill pill. How many times have you taken your toddler children to the doctor and had them get vaccination shots? Did they cry and scream as if they were being murdered? Did they hit you and pull away? Did anyone accuse you of child abuse or tell you to be more sensitive? Of course not. Did your children forgive and forget? Of course they did. Trust me, the acute discomfort of the adjustment to a CI is no worse than skinning one's knee or falling on your butt in the ice skating ring. I should know, because I have one. You're both extremely quick to judge others, especially if it has anything to do with a CI. Perhaps instead of judging, you could just sit quietly, read, and learn.

Anonymous said...

to clarify: I have a CI, and also knees and a butt. :)

Anonymous said...

Miss Kat's Mom
I want to thank you for being honest about what is happening at home for Miss Kat's with the 2nd CI

I will keep u all in my prayers that the will no longer be experiencing this discomfort

I want to share with you how upsetting it is to learn about this because for many of us - to be Deaf is a good thing, it is a fine thing, it is dandy to be Deaf

I know that u love your daughter

i do not questions that

i know that u want to truly do right by her

Miss Kat's asked for the 2nd implant and you gave it to her

Miss Kat's is asking not to put on the 2nd implant and you are not willing to honor that request at this time

I understand your reasoning

I also hear your mother's intuition screaming that it is so so so not cool for ur daughter to be so upset and traumatized by something she wanted - that speaks volumes

u must listen to ur good heart as a mommy and listen to what miss kat's is telling u

re: minimizing this situation to be "normal"

i know u and ur husband want what is best for miss kat's

i am really sad that if this is such a common reaction and response to 2nd implants - WHY WERE YOU NOT INFORMED OF THIS IN ADVANCE?

WHY WERE U NOT GIVEN TIPS ABOUT THE TIMER AND PUTTING IT DOWN LOW AND ROLLING IT UP ETC?

that really concerns me miss kat's mom cuz we can only do right by our kids if we have the right information

re: folks use of the word NORMAL here - it is an issue of VALUES

on one side we have:
many Deaf and Hearing people who consider being Deaf to be normal and thus do not need excessive and aggressive means to make them less Deaf

on the other side we have:
many Hearing and Deaf people who consider to be Hearing normal and by any means necessary make one self or offspring as Hearing as possible.

so we have a conflict of values

for some it is not worth it for the child to suffer even if temporarily

for others it is all important for the child to get through this to the place of better Hearing even if the costs involve thousands of dollars, invasive surgery, implanting of permanent devices, use of external devices, special schools, special summer schools in other states, mapping, audiology visits, speech training etc

It is painful to read of Miss Kat's pain because we never thought she ever needed any fixing in the first place

My children often want things that i decide they do not need or are not good for them

You must ask yourself why you truly have chosen the paths not just one but two CIs for Miss Kats if you thought she was fine as she was

Again i do not judge u. I know that u love her. I really value ur being honest. I truly heard ur mother's cry in ur previous vlog re: the hard recent days

my hearts is with u all

i understand that u have invested this much this far and feel u must stay the course

i fully know that this is ur family's own person choice

i just want u to know that u do have the choice to put the CI in a box on a shelf and say we tried and we decided - we love her just the way she is and life is good and she is fine and.... Deaf is dandy

language and love - that all u have to give her

all the rest are beeps and whistles and sometimes ouchies

Much peace

Patti

Candy said...

All I have to say here is any parent would know how kids are and if you're not a parent, please don't jump to conclusion. While I am not a CI user, I have learned enough to know that it does not work perfectly the first time it is activated and anything that is outside of the norm will cause a child to react. Beeping, that's another thing I have heard is very common. It takes time for the brain to recognize what the processor is picking up. From what I have learned from deaf adults who have CI, they tell me the same thing.

I agree, if one isn't a CI user, one shouldn't assume things. And, as a hearing aid user, I experience almost the same as (e explained and the way the first activation is explained here and elsewhere, I realized it is almost the same as turning on hearing aids for the first time after not wearing it for a long time, maybe not the beeping but the sounds takes getting used to by the next day, my aids sounds as If it always sounded the way I know it to sound.

Pain, define pain. Just because a child cries and scream does not mean he/she is experiencing pain. I have three kids of my own and I can tell you, when they cry and scream, most of the time it is NOT because they are in PAIN. Parents who react to every cries and screams is gonna have a spoiled child who will use that to wrap the adults around their finger each and every time.

Miss Kat's Mom, thank you for being brave to share the good and the bad.

Don't stop.

Miss Kat's Parents said...

Patti,

If, after an appropriate length of time, she is not receiving benefit from her second CI, of course she will be allowed to stop wearing it. BUT after only 5 days, that would be irresponsible. She went through surgery, she needs to have the opportunity to get the possible benefits.

As for why? Why did we choose to give her an implant? The first implant's goal was simply to stop the progression of her hearing loss and to return the ability to turn to her name, so we could call her name and sign to her. That was something that she had, but lost. It has nothing to do with accepting or not accepting.

Li-Li's Mom said...

I'm with Candy on this one, if I stopped doing everything that has thrown my child into a blood-curdling screaming tantrum at some time in her life, the list of THINGS NEVER TO DO would start with baths, eating vegetables, getting dressed, going to bed, getting out of bed, walking through grass, drinking milk, taking medicine, driving, not driving ... and continue for quite some time.

This is a difficult to read but great series of posts -- I've not experienced this tough an activation, but we've had maps that were really tough to accept at first ("too loud!!" and required much cajoling. I scheduled an emergency remap at one point, but by the time we had out appt, the next week, Li was fine with that map and those couple of months resulted in our first of many language explosions.

The only times that Li emphatically rejects her CIs (she usually puts together and places her own processors on in the morning -- the better to check her email, her PBS games and the ultimate treat: TV) is when she's not feeling well -- it's an early warning system for us that lets us know a cold is on the way.

It's been a long time between implantations, but I'm betting her catch-up will be weeks, not years.

Anonymous said...

Hi MKM -
Thanks for your reply
Thank you for your openness to following Miss Kat's should she not make the adjustment to the 2nd CIs or if any complications arise. Sometimes folks become so married to an idea of "being right" that they dont always see the "right thing to do"

re: Acceptance of Miss Kat's being Deaf - wouldn't that mean accepting that she would not turn her head when called?

re: pain - if folks prefer i use the word DISCOMFORT fine - i guess i got confused by the previous entry that said: "Miss Kat starting screaming again. She wouldn't put her CI, she was crying and shaking and SCREAMING at the top of her lungs. We tried reasoning, tried bribing, tried yelling, even tried forcing...it all fell apart.Miss Kat missed her bus, we all just lost it. We all cried and hugged and talked and hugged more."

This is more than just a kid being resistant or difficult.

I do totally feel for you and your family. Our kids have needed some invasive medical stuff done to them and it was really traumatic and nerve wrecking but a medical necessity - not optional. Even with that knowledge that it was a MUST do - it was still extremely hard.

Ill continue to keep you all in my thoughts and my prayers.

Peace

Patti

Dianrez said...

Parents know the difference between crying and screaming that requires immediate attention and the kind that comes from frustration, outrage or sibling rivalry.

Also they know the difference between forcing a child to take medically necessary stuff like stitches and injections and the not-as-urgent like hearing aids and cochlear implants. One demands preservation of life and health, the other is simply an enhancement to existing abilities.

Crying and screaming and shaking is something that needs close attention and thoughtful analysis. It may not be an obvious thing.

I've experienced earmolds that pinched horribly and teachers that forced me to wear them no matter what. That was solved by having them see the red sores, but objectionable sounds and intolerable interference, for example, are hard to explain and not so easily understood by hearing people. Imagine being too young and inexperienced to explain a major internal disaster.

When one doesn't know what the problem is, it pays to go slow and carefully. After all, the kid may indeed have a figurative diaper pin open. Tossing it off as "kids will cry and scream at things that are good for them." just doesn't get it. Especially professionals who tell parents what to do about it, like sit on the kid and force it.

Anonymous said...

ya got me thinking Miss Kat's Mom
http://handeyes.wordpress.com/2010/08/31/cochlear-implants-lets-talk/

Michelle said...

Miss Kat's Mom, here's my two cents.... I honestly empathize with the situation you are in as your daughter adjusts... It's been over a year for me since I was activated, and I remember only too well how hard the first 3 weeks were... and then it got so much better. I still have morning shock too. I will actually dread putting on my processor some days but it just takes a few minutes to adjust, and all is well. Sometimes I have a harder time than others... if I have a headache especially... feeling under the weather... blah... I'm just not ready to be so tuned in to the world and I'll put the sensitivity and volume at a 0 or 1... I usually work my way up, but there are some days I still have sensory overload and the low settings are perfect for a while to just relax without too much stimulation but still get the benefit of the device. I mean even at 0 or 1, I hear with far far more accuracy a year out than I ever did in my life with a hearing aid, and yet everything is still somewhat muted. Not sure if I explained that perfectly... but another thing is that maybe you could take off her first processor and let her wear the new one dialed way down so that ear will get more practice without depending on the other ear or being "conflicted" by the different sounds in the other ear. Just a thought of something you might try on the weekends or evenings if during the school day isn't an option.

Anonymous said...

This is sad. Now while I know she need to get used to it, I can only imagine abusive parents who handle this. They probably react out of rage and control. They do exist and often exist among deaf people. While being deaf isn't the reason why people are abusive but it often trigger the situation than it does for hearing people because of being impatience with them.

You need to show parent the appropriate way to handle this by being patience. This not about a kid crying over a candy, it's about trying to adjust the change. It a shame that audiologist, teachers, etc. are pushy. They should not want being deaf as a reason to be abused. Deaf people will hate anything that associate hearing forever.

Therefore, if you are saying it is a good idea to force your child, then so will abusive parents, but only worst if it doesn't go their way.

AliciaD said...

Wow. This has turned into a hot topic.

The issue is to be sure that Miss Kat's reaction is just not being used to the sound - and if that's the case how to cope/adjust and go from there. Again, forcing probably is not the best route as it will be counterproductive. As I said before if she is having a really hard time it may be best to work it up slowly rather then forcing it on and then putting her into an extremely noisy environment.

Also, you need to be sure that the reaction is not because of discomfort with the loudness level, the MAP, or something else. Again, I'm not necessarily an expert since I don't have one myself but I do know that there are different types of MAPs, loudness/sensitivity levels, etc. If this persists it may be worth a visit to the audiologist/ENT.

IMO - there is a big difference between necessary medical procedures, tantrums over eating broccoli, and hearing equipment especially since Miss Kat does not rely on the second CI for language acquisition and communication. She has ASL, and she has one CI.

Hopefully Miss Kat will adjust and begin to like her new CI as much as her old one. Have there been any signs of change the past few days?

xraevision said...

Wow, I've missed a lot of news about Miss Kat! I've added you to my reader so that I will get your posts and keep up. I didn't read all of the comments, but I'm sorry to hear that some of your readers misunderstood, criticized or judged your situation. I read your blog because I appreciate your honesty. It sounds like you're going through a difficult time, but this is not atypical for a CI activation. It's very early days, and you know that things will improve with time. Your daughter sounds very mature for her age, despite the tantrums. Hey, I'm a mother of a deaf child and sometimes I need to have a tantrum myself! Hope things run smoothly from here.

Anonymous said...

Thank you for explaining these details - no one in my immediate family has an implant/seriously considered one, so these details are all things I'd never heard of before. Makes sense though - I know an elderly woman (hearing, though diminishing) who wears a hearing aid, but turns it off when going to the bathroom - she was shocked to find it was so much louder than she remembered! I imagine that kind of dissonance every morning has got to feel a little weird. Thank you for sharing all this.

that Deaf Girl said...

I know this is an old post... but I wanted to add... there can be painful moments with CI's. putting it on first thing in the morning the first week or so... yes it is shocking, normally that goes away. Second thing, there can be true pain with a CI. Certain electrodes can cause pain, I am speaking from experience. That is something people need to be aware of.