Saturday, January 12, 2008

MISHKA - YOU GO, GIRL!

Jamie Berke, back in the house! First of all, I need to say, for those who misinterpreted my post about Aidan Mack that her response to me, touched me, and I understand where she is coming from...as the mother of a deaf child. I did not at all feel like I was under attack, I just wanted to throw her name in the post so more people would read that we are creating an open dialogue. Guilty of name-dropping. I will resort to such tactics for the purpose of letting the Deaf Community know that I am listening to them and their individual experiences. Our experience is kind of different, yet very similar in that living in Italy, Jordan and I both had to learn a language that was not our own, as many hearing parents do when teaching ASL to their children. Learning two languages (LIS (Italian Sign) and Italian) would have been too much to add to the equation. I was unable to speak to Jordan in English as it would have been too confusing for him, he wore hearing aids at the time. We were such a mess:), we still are, but now we realize that that is just part of our daily routine and nature.
Can I just say that the big D really pisses me off as the hearing mom of a deaf child? That big D says EXCLUSIVE CLUB MEMBERSHIP REQUIRED (for some- the price is just too high), but it also says "we need to protect ourselves-" a powerful combination. Jamie Berke wrote:
Without that type of struggle, will the new CI generation identify as deaf? This is what is scaring the older generation of deaf people so much - the thought that fewer and fewer young deaf people will choose to identify as deaf.
What people need to realize and appreciate is that the mothers of ci kids who have been leaving comments are reaching out to the DEAF COMMUNITY with voices that are saying, we love our deaf kids, why don't you? We recognize their deaf identity, why don't you? We would like to be reassured that there is a place within the DEAF COMMUNITY for our kids and for that to occur, our choice of the cochlear implant must be accepted.
Loved this comment left on Mishka's Blog:Hey Mishka Zena,

You’ve got a great thing going here, thank you for doing this. I also appreciate the relatively flame-free dialogue going on in the comments section. (*Gasp!* Could we actually be learning from each other?)
Before I make my own point, I’d like to add that my son (who will soon turn 9) started rapidly losing his hearing at age 7 and now has an ASL interpreter in his school. And one of his best friends in school has a CI. It’s funny because if you ask my son if he wants a CI he’ll cringe, and his friend with the CI doesn’t show much interest in ASL… but regardless, they still get along great. Obviously kids are smarter than adults
Anyway, the point I wanted to make: regarding the request for more CI stories from the actual CI recipients themselves (instead of their parents)… I understand the “next generation” of CI users is too young to post here so that’s a bit problematic.
At the same time, I can’t help but be wary because when I was a kid, there were just so many teachers and hearing relatives raving about how great I was doing. I believed them. I really thought I was doing great. Not until I later attended Gallaudet did I realize that I’d actually missed out on a lot. I never spoke up in my earlier years because I didnt have a frame of reference. (This is similar to the “Met Deaf, Wow!” phenomenon that Gina Oliva beautifully describes in the “Through Deaf Eyes” documentary.)
So it’s through my own experience as a deaf person, not out of disagreement or disregard, when I’m not sure how to interpret it when I see a parent or medical professional speaking on behalf of deaf children. Perhaps this dialogue will help us learn more about each other.
Again, I’m enjoying the comments here and would love to see more from all perspectives.
Thank you for doing this
Best regards,
Drolz

I get that people are wary based on their own personal experience, but they need to come to terms with their personal experiences and not project that negativity on a generation of others. We are all about trying to love every single identity that makes up our kids.

Speaking of love, my son has been in love since he was in the first year of elementary school. He has gone through a series of crushes and last night he handed me a note:
Translated -
Hi, Sara! I would like to ask you a question: would you like to be my girlfriend? Please.(then he drew three boxes under which, he wrote: yes...no...I don't know (rofl...about the three boxes))
from, Jordan
Sara's response:
Jordan, I want to be your FRIEND FOREVER, because I don't want to ruin our friendship. (Note: FRIEND and FRIENDSHIP were underlined five times each)
On the back of this note, Jordan wrote:
How much do I like you? Infinity and beyond and if you will be my girlfriend, I will buy you everything that you want. (little too materialistic for me, but he is an eleven year old loverboy)
He would kill me if he knew that I just told the world, but if there is one thing about me, it's that I still haven't learned how to keep my big, fat mouth shut!

27 comments:

Karen Mayes said...

Well, I am glad that that you are reaching out to the Deaf community, letting us know your side of the CI "controversy" (it is not really a controversy to me, but apparently it is to others, due to their different perspectives.

Keep blogging away... we need to learn to listen to you, we need to learn to embrace hearing parents more than before. I notice that there is a lot of hostility toward hearing parents from deaf people :-/... So I know it is all projection and you hearing parents don't deserve it.

IamMine said...

:)

MishkaZena totally rocks - she's one of my favorite bloggers!

*laughing at the love note*

Eleven years old?!! At the risk of sounding like stereotyping, but are Italians always like that?! ;)

Just keeeeding!!!

I'm glad you are enjoying the open dialogue and we all are learning together! I am happy to see it getting off to a good start with everyone sharing their experiences and different views.

You kinda sound like me - where I love all different kinds of people and don't think one is superior to the other one. I love to yak, yak, yak....

I envy you for being in Italy where there are different cultures and experiencing a different lifestyle!

If I were wealthy, the whole world would be my home - visiting every human being!

Uh oh...I've been commenting too much and distracting myself away from school. I was so good at staying away from DeafRead for almost the entire fall semester.

Tsk tsk...I'll have to try harder now if I want to keep 4.0GPA and staying on the President List while juggling my crazy life with working and raising four kids. Okay, my sweet and loving hubby has helped out A LOT!

Don’t ask me how I manage…because I don’t know how I do it!!

I'm glad you are enjoying with all of us on DR!

Take care!

xo
Iam

Karen said...

What Drolz shared is also a concern of mine as well because I had a similar experience. It concerns me because I know several hard of hearing children (some with CIs)in my district and nearby, who, by all outward appearances are doing well academically and generally socially. But when I chat with them, I see the same struggles of not being able to participate in group conversations on the casual social level and they share with me their feelings which were so similar to mine years ago. Parents tend to see "how far the kids have come" but sometimes overlook that a little hearing loss still has a profound effect on life in terms of being able to connect socially in groups.

IamMine said...

Sorry it's me again...I was glued to that song on your blog! The song was beautiful and thanks for providing the lyrics, which did help a lot connecting the words I was hearing what he was singing.

You ought to check out some of the ASL music you can find around on DR. :)

Two comes to mind right now - DPAN's "Waiting on the World To Change" here on youtube: Waiting on the World to Change

And B.A.D.'s ASL Music that was produced by Aidan Mack with the song, "Who You'd Be Today" by Kenny Chesney in memory of her friend:
In Memory of David Adams (DEAF)

I thought you'd enjoy those videos!

If anyone wants captioning on the first video, you can find it at www.projectreadon.com or try going here at Music
and click on "D-PAN - Waiting on the World to Change".

(Ahem, I am a Pearl Jam freak so you'll see two PJ videos on that page that I had requested them to caption! I'm still waiting for more to be captioned...along with Sleater-Kinney and Radiohead, to name a few...)

Anyway, enjoy! :D

Thanks and I'm leaving for real this time!

Lolypup said...

oh' to be young again where everything fits neatly into little boxes that you can check off "yes" - "no" - "dont know."

See thats the beauty of being innocent and free of external influences.

The deaf community is huge and diverse, dont let the minorty scare you away, the big D group is the minority in the deaf community.

embrace life, click on a box and dont let others dictate which box you click on.

patti said...

oh the love note is adorable

and yes he will kill u when he finds out - smile

my daughter (12) has been training me over the years certain things r taboo for me to discuss with others publicly

chief amongst the list are "her feelings"

only she can speak for her feelings and only she should be allowed to choose when and where to do so

i often fail at it and by composing this comment in some ways i have violating a bit because i am discussing her feelings about not discussing her feelings smile

oy parenthood

re: ur complete post - i havent been following the other blogs this week so will check them out but i think there are some important things for us all to think about

1. who speaks for who?
D/deaf, hi, hh, with c/o, without etc
r pretty much MUTE often when it comes to telling their own experience

parents play a HUGE role in shaping our children's world view so a child wont really be able to articulate their frame of view - THEIRS - owned and claimed not given - until much later

so u r right the "new generation" of kids with CI cant really articulate yet and often r not given a full opportunity to

some can -just as jordan can profess his infinite love - he might have much to profess about CI but again it will be framed by the circumstances in which he lives

none of this diminishes or invalidates - no no no

its just stuff to understand

re: big D - it is getting a BAD rap in my overveiw of things

if u got to http://blog.deafread.com/pote
i have three entries that relate to this subject and finding ones place
What is Deaf culture
____?_______ culture
finding my home

im not trying to plug my blog/vlog site - i just dont want to rehatch what ive already written about etc

if u saw them an yawned - no problem
if u saw them and disagreed - would love dialogue - ur vantage point is VERY important
if u didnt see them but have some thoughts to share after viewing - pls do

the first 2 listed above r not specific to children but do talk about the big D thing
the last is about my childhood a wee bit

i thank u for blogging

i thank all the other parents who are blogging

from the few blogs i have read of hearing parents of deaf children - i can see a GREAT GREAT GREAT love for their children

this should never be questioned

it is my goal that the parents will in turn see a GREAT GREAT GREAT love for their children coming from the Deaf community

the way we get there is by putting politics aside and thinking of the kids first and foremost and saying
"Welcome - u r loved"

since jordan seems to be very sophisicated in his thinking (judging by his love letter) i wonder if he could offer up a blog entry - could he write some stuff on his thoughts re: how he feels about being deaf, how he feels about being culturally Deaf

i think he would have much to teach us - American mom in Italy - u know duality

most D/deaf folks experience a duality - a physical condition that shapes and defines who they are and also a sense or yearning to belong and when "people like us" going ah THAT

to arrive and be rejected - NO THANKS. thats gotta stop

so just wondering if Jordan could sharing some musings on his POV - granted readers will have to understand he is 11 and our sense of selve CHANGES throughout life

just a thought

peace

patti durr

Val said...

Yes Jordan will be furious if he finds out mom told the world. Just tell him that some mother far far away will read this after just finding out her little boy is deaf and will cry tears of joy knowing that her son will grow up and fall in and out of love just like everyone else and will hopefully have the confindence and the courage to write back, even after the word FRIEND was underlined five times. Go Jordan, isn't he just precious.

Amy said...

Jodi,

Hello! Greetings from the States!

I enjoy reading your blog and I am so glad that you are willing to participate into the open dialogue with the Deaf community to come with the terms of understanding each other without judging each other. It starts with understanding, educating without prejudice, and sharing the stories. I would be very interested to hear the mouth of babes/kids soon.

Cochlear implantation is a technology that helps children to hear sounds, and it comes with a lot of support from family and receiving appropriate therapy and intervention to make this young toddler to understand what is going on.

There are no mention about deaf children with additional disabilities (especially learning differences, neurological difference, etc) who receive CI and their progress is significantly different.

I have seen so many children in my school who were implanted and they are struggling. It is not because how much they can hear sounds, it is about how much they can understand, decipher and process auditory information to the brain, AND then decoding the comprehension of what it was spoken. That is a different category of deaf children who didn't benefit. I call them as visual learners instead of auditory learners. I wish there is some kind of identification of these young toddlers with CI who are visual learners who were struggling and can get better approaches without letting stay behind. I do not want to label them as CI failures... that would be a very painful stigma for some kids. We used to called "oral failures" - that hurt the community so much, and caused so much anger eventually.

Before I get this too wrapped up with my comment, I want to alert you about the technical problem I'm having with your blog. It is hard to scroll down to read what you were writing while there is an active link of musical lyrics scrolling which prevented 'smooth scrolling'. I had to click the slidebar to read further down, and I missed the lines. Is it possible for you to consider turning off the musical lyrics? I hate telling you that, because it is really hard to read your blog while the box is actively scrolling.

Thank you so much and thank you for insisting the dialogue, Jodi!

Amy Cohen Efron

Jodi Cutler Del Dottore said...

Karen,
Thank you for your continued support and wise words...I appreciate your comments, Jodi

Anonymous said...

Amy/Jodi --

It's great that you reached us out to understand at each other better.

Aidan replied her comment in Mishka was a way of off the point.

I am not the researcher about the CI thing, however, we are all scrutinizing on the infants with CIs in about 10 years from now.

White Ghost

Jodi Cutler Del Dottore said...

Hi Iam!
I don't know any other eleven year olds like my son - it must be the Italian-American combo thing! Four seems to be a lucky number for you...amazing! Jodi

Jodi Cutler Del Dottore said...

Karennnn,
Thank you for your continued support and beautiful blogs. You are so right about difficulties in group situations. We have been very fortunate that within our mainstreamed school setting, the teachers have worked to create small group situations to help Jordan with certain subjects that are more problematic. This is definitely an issue that needs to be addressed...big hug, Jodi

Jodi Cutler Del Dottore said...

Iam - LIVE FOR PEARL JAM, I'M LISTENING TO "JEREMY" AS I'M TYPING! Saw Eddie Veder in concert...died. Brings back great college memories...thanks, I'll check out Aidan Mack's video that you suggested...thanks, Jodi

Jodi Cutler Del Dottore said...

lolypop,
I am learning that they are a minority because I have only received love and support, so far...thanks, Jodi

Jodi Cutler Del Dottore said...

Patti,
Thank you for your comments, questions and information - I will definitely read your blog and the posts you've suggested. Regarding feelings, we talk about all of it here in this house and he knows I have big problems keeping a secret. He told me about Sara with a huge smile on his face...love...ain't it the most beautiful thing? Jodi

Jodi Cutler Del Dottore said...

Val,
I'm so glad you've posted on deafread.com so everyone can see your BEAUTIFUL kids, looks like I'll have to steal videos elsewhere:) or else finally learn how to make my own.
Big hug, Jodi

Jodi Cutler Del Dottore said...

Amy,
It's nice to meet you. I changed the lyrics' style, so I hope it makes for easier reading, I'm hesitant to take it off because others have requested that I include it. Knowing how difficult it is for Jordan to understand the lyrics - especially because they are in English- I'd like to keep them up there for a while, so people can read while they listen.
I know you are speaking from your personal experience, I would just be careful labeling very young children as visual learners before they have the opportunity to develop better auditory skills. My son could have been labeled as a visual learner during his hearing aids phase, but that has changed as his comprehension has developed and his spontaneous language has improved. In regard to performance with the ci in children with various disabilities, I suggest you take a look at http://rdisuperparents.blogspot.com/ Amy's blog, her son is autistic. The ci is not supposed to be a cure all for all, each deaf child has a different experience because each one is an individual.
Looking forward to MORE dialogue...thanks, Jodi

IamMine said...

LOL!!!

I've seen them 14 times! :-x But I didn't get to see them in earlier years which I SO wish we did but the timing was ALWAYS bad! We ended up seeing a lot of them from 2003 - 2007.

Not sure if you knew but they played in Italy last year? :D

I have their Italy tour on DVD.

You'd LOVE it!!

I'm having a friend captioning it for me so I'm patiently tapping my foot.... :) :D

Oops I'm off the track here...but nice to see another person who likes PJ! Even though they typically like their older songs which we die-hards tease by calling them "casual" fans.

Not nice of us, I know...

We know who those fans are by identifying which songs they respond to at a concert.

Those who jump up and go crazy over "Jeremy", "Betterman", "Alive" but then sit down or just standing for the rest.

Ahhh... casual fans. ;)

pdurr said...

fjord, lakshmi, “voices offstage: how vision has become a symbol to resist in an audiology lab in the U.S.,” Visual Anthropology Review, Vol 15 no. 2, fall / winter 1999/2000

might be of interest

ethnographic study that observes deaf children in audiology labs getting fitted and trained with CI

it asserts deaf children already have a visual acuity (and suggests one would want to promote that in the event the CI breaks or is not working well that day etc) and because it is an asset and natural but that most labs actual discourage the visual acuity

u might be surprised that if u stand back and observe jordan that at times he may still be tapping into that instinctual reflect to pick up cues from ones environment visually

it is very different from how a fully hearing person would do it and in all the children i have observed with CI presently - even the ones with new fangled CI - they are still exhibiting this visual thrist

it may be reduced over time or decrease if the environment does not stimulate or or actively discourages it

peace

patti

Jodi Cutler Del Dottore said...

Patti,
Thanks for your study and information. When I look at my child, I see and hear my child and don't need studies to decide what is best for him and what tools he uses to learn. I can use studies when I need to make an objective, educated decision. I am his mother and I see his soul. This visual-auditory stuff isn't convincing me with regard to my child. However, this information may be useful and interesting for another parent who is still looking for answers regarding how to best address his or her child's needs.
Peace,
Jodi

http://blog.deafread.com/pote said...

hmmm

not sure if the spirit in which the information i commented on reach u in the way i intended

ur comment seems defensive or as if in some way i hurt u

if so i apologize

my comment was in response to a previous comment further up in the thread re: the "visualness" of deaf children

im sorry if i was not clear that i wasnt trying or intending to preach anything

just more of an fyi thing

wasnt questioning ur choices or implying u "needed to do anything"etc

could just be the medium of the internet but ur comment seems to have an unhappy tone in it

if my words in anyway trigged such - my apologies

much PEACE

patti

Jodi Cutler Del Dottore said...

Patti,
*grin* - I think I just felt bad about telling Jordan's story after you started talking about your daughter's feelings...also, I had tried responding to your comment four times but blogger would not let it pass, so at that point, I was SO annoyed that maybe my tone altered from its original state. I haven't visited your blog, yet, I've been out the past two days, but I will and then I'll put a link to it on my blog...thanks so much! Jodi

pdurr said...

cool

thanks for sharing

it is totally frustrating when u compose a response and then it gets wiped out

re: my discussing my daughter's "no discussing my feelings publicly policy" didnt intend for it to be a reflection on ur doing so. just more so of our kids and their development and POVs etc

this is why i also asked if jordan would ever want to write up anything re: his POV on what it means to be DEAF beyond just the physical part

can understanding totally if u prefer he not or if he prefer he not etc

my daughter has awesome thoughts and i have kinda begged her a few times "can i videotape u commenting on that and..."

"no, ma. no no no!

just think we have much to learn from our babes and didnt want to imply that i didnt think u know ur boy for who he is and who is becoming

11 is like the threshold for that autonomy thrust so it is so wonderful that he shared his note with u - speaks volumes for his relationship

smile

peace

p

Jodi Cutler Del Dottore said...

Hiya!
Will definitely have Jordan share something, but it will still have to be me that translates, we are nowhere near abstract thinking in English! Smile back at ya, Jodi

Mark Drolsbaugh said...

Hi everyone,

I wanted to respond sooner but my schedule would not allow it. However I still wish to point out that a few people used the word “projection” in response to my original comment. I can understand how someone could arrive at this conclusion, especially after I shared my own personal experience and also considering how they don’t fully know my background.

First of all, let me assure you that I was not projecting. My concerns, rather, are more along the lines of what Karen said (the Karen from A Deaf Mom Shares Her World, not Karen Mayes). Amy Cohen-Efron also made some good points that echo my sentiments.

I’ve worked with several CI children and most of them, as far as I can tell, morphed from “deaf” to “hard of hearing” from a functional standpoint. That’s where Karen and Amy’s concerns come into play.

Also, I personally know several deaf people who have a CI. Two of them had bad experiences (including one guy who had to go right back into the operating room after something went horribly wrong). On the plus side, there’s another person who had a fantastic experience with the CI. She loves it and has no problem conversing with her hearing relatives, either in person or on the phone. For this person it does indeed seem like a medical miracle.

However, the great majority of the people I know who have a cochlear implant fall somewhere in between. And that brings us back to my original concern. The “in-betweeners” have their own issues of which most of the world is unaware.

As for my own background: I consider myself culturally Deaf. I have my own ideals that match the ideals of most people in the culturally Deaf world but I don’t force them on anyone - not even my own kids. I believe that the individual comes first before the ideal.

FYI, my oldest son is in the category of kids most likely to succeed from a CI. I let him know this. I let him know of ALL the options he has, even the ones I wouldn’t want for myself. He has a right to know. Someday I’ll have to publish his response. Absolutely floored me. I stand by my earlier assertion that kids are smarter than adults.

Anyway, back to my background: even though I’m culturally Deaf, I’m also the guy who, in the book Anything But Silent, wrote that it was time for the Deaf world to welcome the CI deaf. This was published in 2004 but it was an event in 1998 that made me change my thinking (in 1997 and the years before, I may have been guilty of projection. If you want me to explain how my perspective changed, I would be glad to do so in a separate post in my own blog.)

In another one of my books, an anthology titled On the Fence: The Hidden World of the Hard of Hearing, there are about 5 CI stories. Again, I do not allow my personal ideals to stand in the way when I encounter stories from people who have done differently than I would have done. I may have my own beliefs but these writers do have a powerful story to tell and they have every right to do so. I hate to toot my own horn but I wanted to mention all of this so that in the future, when I share my pro-ASL perspective or any concerns about the CI, no one will write it off as “projection.”

That said, I have one more issue/concern that I would like to share here. This topic was initiated by Jodi, a hearing parent whose child has a CI. And this parent shows all the willingness in the world to listen to the Deaf perspective. I greatly, greatly appreciate it because it is through this willingness (on both sides) that an effective dialogue can be maintained and perhaps somehow, a sense of community for ALL of us can be forged. We are all in this together.

My reason for bringing this up is that while we have a hearing CI parent being open-minded, it’s puzzling to see DEAF people in here consistently posting anti-deaf commentary on a consistent basis in their own blogs or in comments sections everywhere else. I understand a little bit of kvetching here and there (no community is perfect – we all have our flaws), but to see deaf constantly bashing other deaf in such a manner truly boggles the mind. I truly don’t understand because let me tell you, my years at Gallaudet University were a magical experience and I cherish the culturally Deaf world with all my heart. So if you’re a deaf person constantly critical of the Deaf world, I can’t help you. All I can say is look in the mirror and maybe, just maybe, you’ll be able to help yourself.

Jodi Cutler Del Dottore said...

Mark,
Another "blow me away" comment...I'll probably post this one too, especially in the light of Mishka's latest post. I can deal with all the dialogue, but this reoccuring "get your kid fixed" comment is a little too much for me to handle. I'm really happy to see that you understand where I'm coming from...it's midnight here and I am beyond exhausted. Thank you so much for taking the time to make such a beautiful comment. This is only the beginning - I'm just getting started...Jodi

Jodi Cutler Del Dottore said...

iam,
That was my first ASL music experience...beautiful and profound, moving. Thank you so much for sharing the AMack Video...Jodi