Kat Reading

Kat Reading

Tuesday, June 21, 2011

This is really ridiculous

I wrote a simple post about my child hearing a simple sound and look at the ignorant mess it turned into.

Fact #1- Miss Kat has residual hearing. It has been measured previously, I just haven't bothered to dig the paperwork out (because it doesn't matter!)

Fact #2- Miss Kat has a progressive loss, which means she is more attuned to being able to hear sounds that exist around her. She has had the ability to hear at normal levels in the past, so she knows what it is like to hear sounds, even faint sounds.

Fact #3- Miss Kat has an auditory brain. Because of her previous hearing experience, combined with her excellent hearing through her cochlear implants, Miss Kat's auditory pathways in her brain remain auditory. They have not switched over to visual, and (as the research shows, more often) tactile input.

So, when a profoundly deaf from birth person says they FEEL something, I am positive they ARE feeling it. Their brain has converted all those auditory pathways over to process tactile and visual stimuli. But, that isn't what happens with kids who have very good, early auditory input. Their brain uses those pathways to process auditory input. They do not have the same brains that Deaf adults have.

Be pissed, write me nasty comments, I really don't care. But at least understand the difference before you do it.

Oh, and P.S.-
The reason this blog is mostly about her "ears and mouth" is because it is a blog about our journey through the experience of raising a deaf child who know has cochlear implants. It is not about our daily life. I don't generally blog about going to the dollar store and having her figure out what she wants to buy and then count out the money to the cashier or how excited she was yesterday when we surprised her with new Hello Kitty clothes for summer school, because none of that relates to my goal of this blog. I am writing about the experiences that relate to her hearing loss, her new found hearing with cochlear implants, her journey with spoken language and our experiences with ASL and the Deaf community. Her life is so much more than this blog.

25 comments:

Li-Li's Mom said...

Hello! The comments your posts generate are the BEST. You need to put this all in a book, you know :). The sturm und drang of a toilet seat clanking experiment ... who would have thought?

My daughter has bilateral CIs and didn't lose any residual hearing, acc. to the booth tests. Some do, more and more nowadays don't. I wouldn't bank on keeping it if that was an issue, but if you are eligible for a CI, there's not much useful hearing there to begin with, so nothing valuable lost if you do. We'll probably get it tested again this summer now that a few years have gone by. Our audi thought that she'd probably lose what was left over the years because we were no longer using it, no longer stimulating those few hair cells remaining.

But more to your point -- we come across those weird moments so frequently when she has no CIs on -- that sudden realization that the CIs are off, and yet ... 'did you actually hear that'? She's very intuitive. Last night, in the dark while putting her to bed, my husband and I were talking with one another, normal voice level bc her processors were off and she couldn't see our faces on either side of her. I mentioned something about batteries and a moment later Li started murmuring "Mama, I changed the batteries in my black CIs but I didn't change my pink CIs." Freaky. But I don't think she heard us -- I'm convinced she reads minds! :)

Li-Li's Mom said...

PS. If you have an iphone, there are a few iphone apps that allow you to measure the db level of sounds.

Melinda said...

I love reading your blog & find everything you write extremely interesting & informative. My dauighter is only 15mths she wears ha's but its nice to read someone elses experience. I think some people get there kicks out of writing nasty comments on peoples blog pages. Why on earth else would one do that? or they are just bitter & very very uneducated about hearing loss. Keep doing what your doing & writing about Miss Kat because your doing a great job. I think hearing loss today is defiantely alot different to 20 or 30 years ago & each child is different.

PinkLAM said...

Some of the comments you have received are absolutely ridiculous. You don't seem to be getting hurt by them, and I am glad that you are able to take it all in stride. I am not quite sure why these people are attacking you and insisting that everything you say is incorrect, but please continue ignoring them. They don't deserve your time.

Oh, and I just thought of another sound I am able to hear-- our burglar alarm. It's fairly loud but not nearly as loud as I would think it would need to be for me to hear it without my CI's on. And to the people that insist a cochlear implant recipient cannot have residual hearing, that is outdated information. Many surgeons have been using gentler techniques for years in order to do less damage to the cochlea and preserve more hearing (which is vital in some newer developments, such as the hybrid CIs)

Kim said...

I am so sorry about all the negativity in recent comments... I agree that it is ridiculous! Even if people disagree they should still be respectful. I have no idea whether she really heard or felt it, but I would be inclined to believe you. I'm sure you know her better than anyone else. You are a wonderful mother! At least outside of the blogosphere, you can choose to steer clear of such negative people.

Anonymous said...

Here's what going on between MKM and the deaf community. If her daughter saw movem't in the corner of her eyes and turned her head toward item,and MKM believe she heard it. some of us try to explain it is possible she saw it (based on our experience) . Does MKM valid our experience and say "It's possible." Nope, she argue even though she have no proof (decibel level of that sound within the distant) even though research have proven deaf people have "super vision"

why is she on deafread if she is not interested learning through our lens, I have no idea

Miss Kat's Parents said...

I'm done being nice.

Idiot #1- I explained exactly why I don't believe you, I believe my child.

Idiot #2- Did you bother to read ANY of the posts I wrote. She clearly did not see anything as the shower curtain was closed the first time and her back was to me the second. PLUS, she doesn't have extra visual capacity because she is deaf, because her auditory pathways remain intact servicing auditory input, which AGAIN I just explained in this very post.

And if there are potential Idiots 3-100, don't bother writing.

Thanks.

Candy said...

It's interesting how some in the deaf cultured community are demanding that hearing parents LISTEN to them. And, MKM listened to them, Miss Kat uses ASL, eventually MKM decided to add in CI and give Miss Kat everything she'll need to succeed. This child uses ASL, for petes sakes and you still attack MKM? Wow.

Well, other parents are going to say, why should I listen to the deaf community when no matter what we do, we'll still be attacked.

MKM, you are being attacked because they do not like YOUR TRUTH.

Kim said...

Anon said:
"Does MKM valid our experience and say "It's possible." Nope"

To be fair, the negative comments also (mostly) did not say "It's possible" to MKM either. I guess you expect her to validate your experiences while you invalidate hers? Because yours are clearly more valuable (sarcasm).

Anonymous said...

for your information, I did say it is possible that MKM that she can hear. Hence why I mentioned hybrid CI in one post.

Anonymous said...

MKM, I didn't mentioned curtain on that comment.

BTW, why is your blog link censored on deafvillage?

Anonymous said...

I mean, I wasn't talking about the curtain/lid situation in that comment. There is nothing wrong with being deaf and how we sometime adapt. When some of us mention how we handle ourselves as a deaf person, we take pride in it, some of us are NOT trying to deny she have some residual hearing left from cochlear implant. I know you feel it is important because of the myth going around that it does. sometimes it does and sometimes it doesn't, it is still a risk of losing residual hearing.

Candy said...

Roger Opet..

MKM is entitled to blog however she wants to and you should see the the attacks she gets outside of her blog, I don't blame her for reacting the way she did.

Let's just say I have this entitlement being part of the deaf cultured community, it wasn't a choice, I was born into it. ERGO, I have a right to encourage her to continue to blog the way she has which is to share HER story and share HER truth, whether anyone likes it or not.

Candy said...

One mas, Roger..

It wasn't disagreements nor was it suggestions, it was an attack.

It was also anger bestowed on MKM for not "listening" to THEM.

She's listening. She decides what to do in the end and the decision she made angers THEM.

K.L. said...

MKM, It really is amazing how much controversy can be generated from a simple observation you made about your daughter. I have taken a break from blogging. It was just taking too much of my energy. But this is a wonderful tool, and if you can keep it up, it will give you a great window into Miss Kat's history, which otherwise could easily get forgotten. Keep up the blogging even if you end up having to disallow comments.

Candy said...

MKM..

The whole thing is absolutely ridiculous. This is definitely not how it is out there in the deaf cultured community, at least not how it is with the kind of folks I know and many of them are deaf of deaf.

No matter what you do, they will always not like how you let your daughter take the lead (because now it is English and Spoken language), they will not like how you focus on LSL rather than ASL/sign language. For them to be happy, you would have to put ASL on the pedestal above all. It is not good enough for them that Miss Kat knows ASL. It's never good enough for them, they want LSL to DIE and wither away - which isn't going to happen anytime soon.

It's summertime and I'm taking a break, by the time I come back I don't expect things to get any better.

Whatever you decide to do, I hope you continue to blog. ;o)

inmate23 said...

re fact 3

it is understandable she has auditory brain-she was born hearing

some peoples brains switch(evince when trying to teach them lsl through a ci after gone deaf due to meningitis and learned sign) in as little as 2 years hers didnt

i think you are parent who truly listens to your kid when SHE asked to go to an oral school

Mike said...

I have to throw in my support of MKM regarding her blogging and the inane responses she got. And, Roger, I've seen her comments in AD for quite some time and she has been much more diplomatic and gracious than not when it came to responding to other people's nonsense. What I saw mostly was that she was the one that were attacked regularly from various points, much in an indirect way but the aim was squarely at her. This is exactly the kind of thing that turns off parents of deaf/hh children once they lift that rug and see the all dirt underneath it.

Nice going people. *clap* *clap*

No where have I seen MKM responded in such a way where she isn't respecting other people's choices regarding communication, hearing loss, the deaf community, their experiences, etc. She certainly isn't telling them what to do with *THEIR* choices. If you actually think she did that, I say you got desert sandstone rocks in yer heads hallucinating from heat stroke.

It is just utterly ridiculous here. MKM was there *in person* and not the people who made those comments about the dropped toilet lid. And she blogs about it. And some people actually got upset when MKM disagreed it couldn't have been the vibration but the actual sound she heard? And what's funny, MKM went through the rigors of trying the whole toilet lid drop experiment, too. That validated the whole idea that Kat actually heard it and not felt it with her residual hearing. Funny how some screeched thinking MKM was invalidating their experiences.

Where?

Paranoia much?

Anonymous said...

I am kinda mad at her for putting me in a box by calling the whole deaf community ridiculous.

that lid must be over 95 db because I have CI and I am profoundly deaf. and I can "hear" the darn lid. more easily than my own dog barking near my unimplanted ear (just faintly, all I have to do is plug my ear and I can't hear him anymore, but I still hear thd lid with my ears plugged with my fipo cares if she can hear it or feel it or if she have residual hearing.

MKM, I wasn't even critizing or attacking you but you made me feel I was. I am afraid I won't read your blog anymore, not that you care anyway.

btw, those who keep complaining how deaf look to parents, well I don't care how the parents decide because if I did, it wouldn't make a world a difference. I don't care to play the submissive deaf to protect the culture, ASL, school because I was never a part of it. BUT I am an humanitarian and I support their rights to be heard and protected.

Charlotte said...

I was remember the first time I met Miss Kat, with the little nasal canula taped to those cheeks and the oxygen tank in the stroller basket. MKM, MKD, and MK have done more than just defy the odds. I think back to the doctors telling you to pick out a casket because she was not going to survive, to this fantastic, smart, self-assertive, confident little girl(just like her mother). MKM has been an unbelievable advocate for MK since the day she was born. So much love and admiration in my heart for your family.

Anonymous said...

I am nothing short of astonished at the number of people who genuinely MKM should believe a stranger on the internet over her own child. Just, wow. I don't care if the little girl heard it, felt it, or watched a unicorn do an interpretive dance about the toilet lid falling; to insist that you are more relevant than this woman's child or her child's doctors is astounding hubris.

This just floors me.

Anonymous said...

just had to chime in along with other supporters.

Don't let them get to you. Keep doing what you believe in, and whatever is right for you and your family. Btw, I enjoy reading what you share, both in your blog and off-blog comments.

there are silent deafs who aligns with what you said. rule of thumb: the complainers tend be louder than the satisfied.

- from a profound deaf, non-ci user.

Mike said...

Miss Kat, now some are saying that for those born with a hearing loss they can never be able to speak effortlessly like a hearing person. I busted out laughing when I saw that. In fact, you have kids with CI who do speak effortlessly and to boot even hear their accent or dialect. That tells you right away the cochlear implant is working. Also, the link below is a to a video of Vint Cerf, father of the internet, who was born with a hearing loss and wears a hearing aid. Now, some are, laughingly so, saying he slurs his words, and doesn't pronounce some of the words or consonants correctly in that video.

http://www.youtube.com/watch?v=zulDYxyv4KQ&feature=player_embedded

Katy, Texas Mike said...

What an adorable little girl. You are lucky to have such a wonderful gift, hearing or not. Although, as a hearing parent of hearing children, I can definitely see why, you want her to be able to hear, as much and as long as she can. Let's hope it is forever. But, even if she eventually loses all her hearing, at least you already can talk to her and she to you, and with others who are deaf/sign using ASL.

I knew two deaf kids in high school, whose parents barely fingerspelled. I always wondered how a parent could not learn the language. So, kudos, to you for learning and teaching her ASL. On the other hand, I have also wondered how people who speak ASL from birth do with reading and writing. I am learning from blogs, and youtube posts, about how the deaf are, apparently, at least kind of bilingual.

I find your blog interesting, and informative on something about which I might never have known. Thanks for sharing.

I also find some of the negative comments (of which, I imagine I will be the subject for my ignorance of deaf culture/language, etc) interesting in and of themselves.

I have heard, on TV and on the Internet, that some deaf people don't want their children to hear. I think I (at least a little) understand this feeling; though, I don't agree with it. I definitely think it's a parent's decision how they raise their kids and (so long as they are not physically abusive) they have the right to choose that for their child, if they want. Likewise, (I think, some of them are a little too militant about it and that is where you get a lot of your negative comments), I think you have every right to let your daughter hear, as well as sign.

Katy, Texas Mike said...

Thank you for sharing your difficult, and beautiful, story about parenting your adorable daughter.

Until I read your blog and the comments, I never knew how hostile, some deaf people can be toward parents who, like you, want their hearing-impaired childrent to be able to hear and experience a life similar to their own, complete with music, talking, "slamming toilet seats", birds, etc.

On the other hand, I can understand why some deaf people may not want to get their children hearing aids and / or cochlear implants. They (I think) want their kids to share their life experiences, which includes not hearing music, but feeling it and / or other things such as being in a tight-knit, smaller community (of ASL speakers/signers)) with whom they share a great deal.

I think i will likely now be the target of some negativity for me "ignorance", which is in my case a completely accurate use of the word, "ignorant"; I actually know very little about deaf people and their culture.

I would like to know more.

thanks, again for sharing your stories about your life,

Keep up the good work.



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