Showing posts with label cochlear implant. Show all posts
Showing posts with label cochlear implant. Show all posts

Tuesday, October 21, 2008

Okay...Here's a Hint













AND




Coming very, very soon.

Thursday, September 4, 2008

Amplified at 3.5 yrs...National Merit Scholar Today


I always rant and rave about the amazing support offered by the incredible (and hot and sexy) parents on the Pediatric Cochlear Implant Circle. In fact some of the current threads are...
Freedom BTE and FM System
Amazing Video of one brother with a CI reading to his other brother with a CI (I will be posting that one, btw)
Bilateral Surgery a Success
Gentamicin and Hearing Loss (very interesting - lot of info offered)
Hearing with noisy background
Static on Plastic Slides
CI Awareness Cochlea Necklaces (I have this one!)
ETC.

Oftentimes, moms post topics such as "Bragging Rights," or "Had to Share," because when we finally see our children succeed, we know just the parents to come to to share our exciting news with...those who are just beginning - so that we can inspire them...and those who have accompanied us along the journey, so that they can be happy for us.

You know, while Jordan was growing up, I never "bragged" about him to other parents, actually I spent most of the time apologizing for his behavior issues. Yet, even while I was apologizing, I knew that he was so super-intelligent that his time would come.

Lately, this mom on the CI Circle has many inspirational stories to share about her son John. This is merely the latest in a looooong series that will only keep growing:


Today we learned that John has been selected as a National Merit Scholarship
Semifinalist. That makes him one of 16,000 students selected out of the 1.5
million juniors who took the PSAT last October.

John was late diagnosed and didn't receive his first HA's until age 3.5, had the evaluated expressive and receptive language of a 12 month old at the age of 4, received his first implant at age 8 yrs 8 months (8 years ago, that's a lot of 8's!), suffered two failures and received his current (and best working!) implant in June 2007.

Yes, he's bright. More importantly, he's hard working. But look what he was able to do despite having to make up so many years!

I know, I mean I KNOW -

I don't just think or speculate, that his intelligence and work ethic would not have been enough to help him achieve this honor without the CI. Earliest intervention is
always the best case scenario, but for all of you guys dealing with borderline candidacy, or auditory neuropathy, or progressive hearing loss that results in
your child receiving an implant past those all important language development
years, look what can happen!

Keep up the hard work and don't lose faith!

PS. When I requested permission to blog about her child's incredible achievement (btw, I was not a Merit Scholar, just in case there was any doubt *smile*)this proud mom added:

Feel free to point out that several "experts" told me that John would never talk (when he was just 3.5 yrs old), that he was more than likely autistic(another reason why he'd never talk - as if autistic children don't deserve services and/or hope), that he was more than likely mildly mentally retarded (their term, not mine), and that I was committing child abuse by teaching
him to speak. When I politely disagreed with all of the above, they told me
I was in "denial". I suppose I was. I was in denial of all their hogwash.
From non-verbal to National Merit Scholarship Semi-finalist in 13 years -
we'll take it.



YOU GO GIRL!!!!!!!!!

Wednesday, March 12, 2008

"Deafism evolved because of Audism"...Implications

It is just impossible to reflect on such depth in 40 minutes with my freaking messed-up head, you just can't even imagine what I'm going through in this period. I did just receive a miraculous letter from the Mayor of Grosseto who accepted my request for "Patrocinio" (not even sure what it means, but I think it's a good thing) for our book presentation sometime in April (no doubt it will be the 16th because all I see lately is 4-16 and 43)so now I have to mentally prepare to sound intelligent in front of a lot of people without breaking down. Should be interesting...but very exciting! And you can be sure that Jordan will be reading his letter to the reader!

*inhale*
*exhale*

Okay, of all of the comments I read and there were some major comments from the last post, what Jean Boutcher said, struck me the most:

Deafism evolved because of audism.

As a defense mechanism? As a demand for validation as deaf individuals? or as the assertion of a collective voice? Why was "Deafism" not present before Audism, because the idea of "Deafism" to me as a product of Audism gives me the impression that a Deaf person lives on the defensive as opposed to the offensive and needs validation of his/her existence.

If this is the case, I can understand why there is so much resentment, anger and closed-mindedness when a hearing person tries to convey a message with heart, not dictate. Living with the idea that my life is dictated to me, judged and found lacking is no way to live. So, yes, I can understand the resentment and anger, but living my life "expecting" that every hearing person or oral deaf individual I come into contact with is a potential audist creates a predisposition for mistrust...which I can understand, as well. I have great difficulty trusting people as I've already written. However, when you refuse to let yourself trust people, you miss out on a helluva lot of incredible people and the opportunity to enrich your life.

*Life ain't easy:)*

Reading your comments and various blogs has given me a deeper perspective on what exactly haunts the Deaf community and has led to such incredible sensitivity on one side yet anger, resentment and an unwillingness to trust on the other side.

KW left another one of her power comments:
Jodi, I haven't blogged about this in much detail because it hurts. I'm taking off to see my parents in a couple hours. My mother wouldn't even discuss my hearing loss for twenty-seven years. She still will not look at my audiograms. My parents still haven't grasped the extent of my deafness.
Mom did not want me to mention my hearing loss to other relatives for all that time. I had to pretend to hear around them. They all live out of state. I felt like she was ashamed of me, as if I made committed an embarrassing crime by becoming deaf.


A Deaf Pundit wrote:
For instance, I remember going into Best Buy with a deaf friend - (side note: he had a CI) but we could only lipread and speak minimally. So I gestured to the store clerk that he would have to write down stuff.
The clerk heaved a huge sigh, and it was very easy to lipread him saying, "I know..." and he was very rude with us. Looking back, I should've gotten the manager -that's how bad it was.


Gnarlydorkette shared an experience from her childhood and concluded with this...:
That last statement alone dashed my sense of being in an utopia. I thought I was normal until that wonderful yet nearsighted teacher snapped me into the reality that NOBODY sees me as a normal child. Really tragic.

Mishka, then shared an aspect of audism that I really hadn't understood even existed - I thought it completely had to do with hearing people's mistreatment of the Deaf. I read the definition but the oral deaf vs. signing deaf didn't really sink in (little thick of me) until this comment:
Superiority, based on my personal experiences as well as countless other oral deaf people. In the oral deaf settings, we were drilled endlessly how fortunate we were to be able to speak and hear (or lipread), unlike "those people" who use their hands. We were taught to look down on Deaf people as unfortunate and stupid people. Since I was indoctrinated in this audistic environment, I can spot it one mile away : /

*You guys deal with a lot of shit on a daily basis, I'm getting where the intensity level is coming from:)*

------------------------------------------------------------------------------------

Amy Cohen Effron left this comment:
Jodi, you said: "Are you sure that those oral attitudes are fueled by superiority and not guilt?"

Can you divulge what do you mean by guilty? Whose guilt? Guilty for not able to communicate with Deaf people? Or do you think it has to do with...

Fear of unknown?
Impatience?
Incompetence?
Disability phobia?
Guilty for not able to communicate?


I said "guilty" because I always have this experience in the back of my head...My first semester of college I worked at the Bagel Shop and oftentimes I had customers come up to the counter to order who were Deaf and signed. I COULD NOT COMMUNICATE WITH THEM! I felt guilty that I did not know ASL, so I smiled a lot, broke out the pen and paper and began writing. Then, my next semester and every semester thereafter I tried to fit in an ASL course with my other requirements. It never worked with my schedule. Guilt was MY reaction to not being able to communicate, which has to do with a feeling of incompetence at not being able to effectively communicate in ASL.

The idea of Disability Phobia (first time reading this term) is directly related to ignorance, the more we educate and spread awareness of Deaf Issues, approaches to deafness and of course *smile* the cochlear implant, the more people will realize that it's not necessary to scream in the ear of a person wearing a cochlear implant or hearing aids. If we give people the words they need to discuss issues in deafness, they will be more willing to discuss Deafness. Knowledge is power, we need to educate others with the assumption that they are willing to listen without being on the defensive. A comment left on Patti's blog really disturbed me. A very nice individual actually said something to the effect that she appreciated my apology because she liked my blog, but "wasn't sure she could trust me."

Am I really so threatening? If so, why?

(will add links later, gotta go to work, Wednesdays are killer)

Tuesday, March 4, 2008

Probably Incoherent RE: Rachel, Patti, Aidan


Feeling like dog. Fever, chills, aches, bronchitis and my effin neighbors upstairs have been BANGING for the past two hours, not even my iPod can make it stop. I am in hell right now. BANG! Cough, can't sleep because BANG!I have had it with this country and my condominium with paper-thin walls. Can you imagine, you can hear EVERYTHING, so when one couple starts banging (not the strip the bathroom bang THE bang) I look at my husband, he looks at me and we refuse to be outbanged by any neighbor, so the BangWar begins. Yeah, we have a rockin' condominium. Can you tell I've hit the point of total delirium? I CAN'T SLEEP, the NOISE is hell! The last ten days of my life have been hell, and now I'm freaking sick to top it all off. BANG!BANG!BANG! Is it annoying you reading about it, because it's driving me crazy?!!

The worst part of all of this is that I can't think and there were like five powerblogs on deafread.com yesterday. Aidan's was like a mile long, deep as ever and I got lost. However, her grand finale was appreciated and very true in our case, I'm totally into the "It takes a village to raise a child..." Istia-Grosseto all the way, baby! (Aidan, btw, you aren't the only one who has been told she's black under the white skin *smile*)

"The Deaf community strongly believes in collaborating with others in order to raise a happy, healthy and hopeful Deaf child. It takes a family. It takes teachers. It takes clergy. It takes businesspeople. And it takes community leaders. It takes people who look out to protect our rights, education, health and safety, It takes all of us, the village."The only adjective that doesn't work for me is "hopeful," I don't want my son to be "hopeful," I want him to conquer the world. And...I would add that it also takes doctors- Pediatricians, audiologists and surgeons...this is my reality in our journey in deafness.

Rachel's made me cry and I haven't cried in a very long time...must be the fever. Patti's response to Rachel touched me especially when she called her "sister, " and threw out this:
I have refrained from responding to many of your blog entries because i did not want to come off the wrong way. Because i did not want to contribute to any of the harm u have already experienced. Because i do not want to exemplify it's open season on Rachel and Melissa.

It is not and it should not be.


Anonymous left this comment on yesterday's blog:
And, BTW, about being a Rachel fan... I do think she is her own person, independent of her mother. She's more willing to listen than her mother is. I left this on another blog just now: There is a huge difference between a hearing mom like Jodi Del Dottore and a hearing mom like Melissa. While I wish Jodi were making sure Jordan learns LIS ASAP, she is open to everyone. She is not indoctrinating Jordan with the idea that Deaf culture is bad and scary, unlike Melissa. I believe Melissa made it so that Rachel thought Deaf people were bad. So when Rachel sees a tiny bit of anti-CI from a few of us (and it's just a few of us!), she immediately thinks "Mom was right," and reinforces what she learned from her mom - Deaf people are to be avoided.
So I appreciate that you're in here, actively trying to engage us in dialogue rather than huffily dictating to us from a holier-than-thou perch. Thank you, Jodi.


I know this wasn't your intention, but comments like these make me feel like shit.
I love Melissa and Rachel because they are true advocates for the cochlear implant, their experience has led them to take a position. They are taking this position so that other parents interested in the cochlear implant realize what is possible with the ci. Nobody has to agree with them, but their strong voice is present, that is already something. I'm wishy washy. I stand behind my choice for my son, but still regret not having incorporated sign, which honestly, would have been too much. Don't even think of putting a hearing aid in my face to try and compare it to a ci, because then, I will no longer be wishy washy.

Melissa is not indoctrinating Rachel with the idea that Deaf Culture is bad and scary, certain comments left on Rachel's blog take care of that all by themselves. Melissa is supporting her daughter in this new endeavor, depsite being constantly criticized, I mean really, who needs the aggravation of being constantly criticized...but here is the kicker, and this is the kicker for me as well.

Having made it through years of av-therapy, ups and downs, temper tantrums, school meetings where they tell you your kid is violent, heart to hearts with your family when they tell you you are doing the wrong thing for your son, crying fits, hypersensitivity, rejection, peer difficulties to finally reach the point of taking the photo of your kid smiling while talking on the telephone because he can hear his mom's voice, he translates a sentence from English to Italian faster than anyone in his study group, he brings home an "A" on his History exam, he plays the piano on National Television and the guitar for an intimate group of fifty...all smiling. There were no smiles for so many years, just a lot of very hard work. This is why we are here writing about our experience and unphased by any type of criticism whatsoever. There is no woman more powerful than a mother who sees her son or daughter taking on the world.

PS. Happy Birthday DAD!!!! Love you!

Sunday, January 20, 2008

First Child DEAF...Do You Have the Second Child?

Hell, yeah.

Thank you so much to everyone for your honest comments and for sharing heart-wrenchingly personal experiences here. This post is dedicated to Sofia Madyson, my hearing 5 year old drama queen of a curly-haired, independent daughter. She could never have known what awaited her when she was born into this f'in crazy family:).

A couple of days ago I was sitting outside of the Bar Stiacciole (bar is not pub, it's cafè) waiting for my friend to talk. A seventy year old man walks out of the bar looks at me, keeps walking, then suddenly turns around and walks back towards me. He looks me in the eyes, and says, "Buongiorno!" (Good morning!)I look him square in the eyes and reply, "Buongiorno!" (thinking...what the hell does this old man want?)Then, he smiles and says, "Le belle donne vanno sempre salutate." (One must always say hello to a beautiful woman.)I'm like, bring it on old man! So, I shyly smile and said, "You have a great day." He turns on his heels and goes about his life. You just never know how you can make a person's life with one nice word.
As I glowed and started thinking, hell yeah, I am ALL that, Sonia arrived and sat down. Her daughter Federica is in the same class as Sofia (her son is Jordan's best friend) and she proceeded to tell me the following: "Jodi, Sofia told Federica that she has a cochlear implant because she is deaf." News flash: my hearing daughter is now deaf. She then told me that Federica really thinks that Sofia is deaf because whenever she tries to talk to Sofia, Sofia says, "Eh, Eh, I can't hear you, what did you say?" Sonia knows I've been so busy with the book and blogging and that my world is revolving around the whole deafness issue right now. She also knows that I have my iPod in my ears 24/7 and that I am so totally in my own head. She was basically laughing at me.
What she didn't know was that the other day, Sofia walked upstairs and asked me to fix her cochlear implant (processor)because it was falling out of her ear. She handed me this pink Barbie behind the ear telephone attachment toy thingie to put back around her ear. She said, "Mom, I'm deaf." I said, "Sofia, do you know what deaf means?" She said, "It means I need a ci to hear." I said, "No,Jordan's ci helps him to hear, but without his ci, he can't hear sounds...his ears don't work like yours. For example in the morning when he wakes up and you both go and watch tv, you always go to get Jordan his processor because you know he needs that to hear the television." She looked at me and said, "Is he blind, too?"

Choosing to have another child when your first child is born deaf is exactly that, a choice. When you love your child unconditionally, the choice in the whole process vanishes and you just get down to business to create that new baby. Driving in my car with Jordan in his carseat, I always felt that there was a body missing in that other passenger seat. That empty seat missing another child, my daughter - hearing or deaf, was screaming to be occupied. When we finally got pregnant, I called my mother-in-law to tell her the incredible news...the first words out of her mouth, "God, I feel so sorry for Jordan. I don't know why you've gone and done this, but Jordan has too many needs for you to dedicate yourself to another child." Shit was that hard going down. As idealistic as this may sound, I firmly believe that "love conquers all." Had Sofia been born deaf, I would have loved her just like I loved my son and in respect to taking something away from Jordan, what greater gift in the world to give him than another person in his world to love him unconditionally. When I was pregnant, I prayed, not for a hearing daughter, for an affectionate, loving, intelligent and compassionate child. That is what God gave me and she happens to be hearing.
The fact that she is hearing is so strange. I was so used to raising Jordan in Italian that I would say certain things to Sofia in Italian instead of English. I had to relearn how to speak English to a baby...so bizarre. Jordan received his ci when Sofia was two, so her English was at a point where Jordan's ability to hear with the CI has enabled him to follow along in learning spontaneous English with Sofia. The whole thing is just so overwhelming to watch and live. The other day the tv accidentally turned off and I was looking for the flicker, Jordan picked up the flicker and said, "Oh, it's my fault, Mom." IN ENGLISH! I have been "Mamma" for eleven years, now I'm suddenly "Mom" and "Mommy" (when he wants something - conniving brat)I have never taught him how to say "It's my fault" so I said, "Jordan, how do you know how to say that?" He said, "I hear you say it all the time." Floored.
Magical sibling moment...Jordan reading a bedtime story to Sofia.
I am so blessed.

Wednesday, December 26, 2007

THE GRINCH WHO STOLE CHRISTMAS LIVES UPSTAIRS FROM MY MOTHER-IN-LAW!!!



UNBELIEVABLE!! First of all, I haven't blogged because I can't freaking open my email, my server is constantly down...it is driving me CRAZY!!!!!! Okay, I'm calm, kind of, because Christmas here is like a 72 hour marathon of pasta al forno, chicken salad, crostini with sausage, mushrooms, fish stuff, eggs, salami, roast beef, fried polenta, french fries, potatoes, chicken broth and AMAZING tira mi su - my mil's specialty and WINE WINE WINE. I didn't eat that much this year, I'm watching my line:)But it is like a non-stop eatfest, you spend four hours at the table, sleep for two, and then plow in the car to go to visit friends where they shove more food down your throats. We went to my husband's cousin's podere, an amazing traditionally tuscan-styled farmhouse in the middle of the countryside, to die for beautiful, roaring fireplace and lots of family cheer. The game of the evening was PAN FORTE, a traditional Sienese Medieval Christmas something something that is a flat, round, rock hard disc of candied fruit, almonds, sugar, etc - I don't eat it and the people here throw it, literally, across a looooooong wooden table where the person who comes the closest to the end of the table without going off the table wins. It's kind of like the paper triangle football game that we played in Middle School during recess. Jordan rocked! I opted out after I sucked and spent my time in front of the fireplace listening to my NEW IPOD! WAHOOOOOO! I cannot believe I am finally home, exhausting three day marathon - and this is how it all started:

As I blogged in a previous post we were preparing to unmask Santa because Jordan is eleven and is the only one in Middle School who still believes - he's convinced- that Santa exists. Well, as my brother-in-law Alessandro prepared to dress up as Santa and left a couple of presents on the landing between floors of the condominium, I went outside to get some more packages to stuff "Santa's" bag. On my way outside, I saw a neighbor, a woman live-in who looks after an elderly woman, walk in the door to the condominium. We exchanged best wishes and she went on her way. I brought the extra packages inside, sat down and tried to calm down my hyper agitated can't-wait-for-Santa kids. As we're sitting there, I hear Alessandro, my father-in-law and my mil arguing because they couldn't find the packages they had left on the landing, they had disappeared. When they realized that none of the three had touched the presents, Ale went upstairs and knocked on this woman's door, who spent twenty-five minutes saying she had walked upstairs in the dark and hadn't seen any packages. Ale called me upstairs to identify the woman and when she saw me she suddenly changed her story to "Yes, I saw you as I walked in the condominium, walked upstairs in the dark, saw a couple of packages that I didn't touch and went in my house." Whoa! At that point her story had changed and Ale who is a police officer in Florence lost it totally! He screamed for ten minutes, threatening her and said he was going to call the police if she didn't whip out the presents...well, that must have convinced her because she hightailed her dishonest butt to her bedroom and SURPRISE SURPRISE PULLED OUT THE MISSING BAG OF PRESENTS!!!!! THIEF! GRINCH! CHRISTMAS WITCH! WOULD YOU WANT YOUR SICK MOTHER LOOKED AFTER BY A THIEF!!!
It took Ale twenty minutes to calm down and we were all in shock, times must be really bad if you have to steal a kid's Christmas presents!
AND NOW FOR THE MOMENT I HAD BEEN WAITING FOR...
After Santa came into the house, Jordan was flying out of his pants and Sofia...after one "HO HO HO!" said, "You're not Santa, you're Zio Ale!" (that's my girl!)(NOTE: don't think that the fact that Jordan couldn't hear Santa's voice has nothing to do with the fact that he believes in Santa)The kids opened their presents and my mil said, "Okay, Jordan, let's go unmask Santa!" I stayed with Sofia and this was the report back from the big event...
Apparently, when Jordan took off Santa's beard, the first thing he did was hug Ale with an ecstatic face, the second thing he did was say, "Zio, you're Santa Claus, but how is it possible that YOU give all the presents to all the children in the world!"
And...that's my boy!

SORRY THIS IS LATE, BUT MMMMMMMMMMMMMEEEEEEEEEEERRRRRRRRRRRRY CHRISTMAS TO ALL!!!!!!!