Monday, July 28, 2008


Well,260 posts later, I'm off to Dublin and I am not going to blog for 15 whole days. I need to get my head together, hang with some 16 year olds and DISCO. My kids are in excellent hands with my husband (THANK YOU!) And my sixteen year olds are in excellent hands, too...*grin*

The mail has been good to me, lately. I received a belated Easter package from a beautiful person filled with JOLLY RANCHER JELLY BEANS!!!!!!!!!
a new book by a VERY special hot mother author that I will be reading while I'm not at the disco supervising insane teens. I will say that reading this book will be quite difficult, I started and couldn't see the words through my tears, but I'll do my best! (live for you, hot MAMMA!)

Something REALLY exciting happened with the ICOP and a sexy male author was involved, but that will just have to wait until I get back.

Let's just say that one day after I get back, a HURRICANE will be blowing through Grosseto and staying at my place. Prepare yourselves for some funny posts around the 14th of August:).

Don't think I'll be "sippin' on gin and juice," but I might just have myself a GUINNESS (or two)!!!!!!

(BTW, I will be checking my emails regularly, so if you need to contact me, do it here:

Friday, July 25, 2008

Rollin' Up My Sleeves!

Well...I just created a Google Group for Italians - the Pediatric Cochlear Implant Circle - only it's in Italian: Circolo Pediatrico Impianto Cocleare. It's kind of strange creating something in Italian, but I have to start some time. The good news is that I finally created an Italian support group. The bad news is that I AM THE ONLY MEMBER!!!!!!
As they say..."Rome wasn't built in a day!"

And then there's my own personal favorite..."If you build it...they will come!"

Thursday, July 24, 2008

Been Thinking...

I know that I got my insane personality from my mom and I think I might just be thankful for that, because I know that my life will never be boring. Mom, I read this today and thought of you: Rather than focusing your attention on painful childhood memories to attempt to discover the source of your problems, concentrate on those happy childhood memories...that butterfly will come.

More Zen: Never abandon a desire because you're tired. Ask it to go away with conviction.

I just got an email with this photo of the founding ICOP (International Coalition of Parents of Children who are Deaf and Hard of Hearing) members under the tree on the wet grass on that beautiful day in Cernobbio...



Tuesday, July 22, 2008

Advanced Bionics Settlement and ...ZEN

There is just no time to breathe with the million projects I'm trying to get organized before leaving for Dublin with six crazed teenagers. A special friend suggested that I read up on my ZEN to find some equilibrium in this crazed period I'm, I've been doing just that! Here are some little pearls, I've been contemplating...

1. I dreamed a thousand new paths, I woke up and resumed mine.
*I'm gonna throw up, the neighborhood kids are blasting High School Musical 2 tunes*
2. To be happy requires incredible courage: that of being oneself. (And, uh, who exactly am I???)
3. Those who are happy to be nothing in particular are noble persons. Don't fight. Be ordinary. (See, now this one goes against everything I am...I'm screwed)
4. Do not search for yourself in others. Look at yourself within yourself. (kind of like this one)
5. (This one is kind of cute...) Buddha says that our sufferance is derived from the fact that we do not see the true nature of things. Begin to see things for what they are...and not as you would like them to be.
6. Then, there was a book by Josh Swiller THE UNHEARD...kind of the entire book was ZEN for me, and the last chapter, entitled THE RAIN...touched me enormously.
There's something so sensual, sad, invigorating, beautiful, etc. about rain...kind of depends on your mood...where you are in your life and thoughts at the moment it comes pouring down.

Onto the Advanced Bionics settlement comment left by Kimberly whose passion and experience in regard to this matter has led me to continue blogging about the situation.

Kimberly...thank you for your comments, I hope leaving them is cathartic for you and others in such a way as only writing your thoughts can be...:

It's me...Kimberly. I posted about my AB experience a few months ago. Obviously, I've been following the AB/FDA lawsuit and resulting settlement. My take?

Well, I'm hesitant to really voice my honest opinions. Sometimes it's more prudent to keep them to oneself, so I will keep the majority of my thoughts to myself. I believe everyone should form their own opinion by doing the research and not allowing themselves to be blinded one way or another. Let me give you an example:

It's like buying a car. I may have owned XXX brand for years, with no problems. However, it's time for an upgrade, too many miles on the old car and I want to upgrade. However, while I'm doing the research for a new XXX I read in the leading consumer magazine that the 2008 model has many manfacturing recalls. In fact the issues are so severe that they have led to an unacceptable amount of driver injuries, so many in fact that the National Auto Safety Board is suing the automaker for not following Federally mandated safety guidlines. Well, I never believe what I hear from just one source, so I do more research on the internet and find more and more negative information about the problem from numerous sources. My research shows that it's been an ongoing problem for several years. I begin to feel pretty lucky that I haven't had the problem with my previous model. However, as a smart consumer, I'm passing not only on the 2008 model, but I'm now shopping for brand X. I'm not going to let owner "loyality" jeopardize my safety of my loved ones. Even if I've never had a problem with my previous model. Especially when I hear that automaker "XXX" settled the lawsuit with the National Auto Safety Board instead of fighting it and proving to me, the consumer that it DID follow all the Federally Mandated safety laws.

What I will say, and this is just my opinion based on how I would react if I were being sued wrongfully. IF I HAD done everything I was supposed to do according to the FDA guidelines. I would have fought turning any monies over tooth and nail. I would have provided all the documentation to prove I followed all the mandated guidlines I was supposed to follow. I would have provided copies of all the documentation I gave to the FDA notifying them of the change of the manufaturer I was using and cleared myself of the allegations, Then countersued for my costs. I would have fought it openly, posted all my supporting documentation and proof that I followed all the guidelines on my web sites and kept the fight as open and public as possible. In other words, I would have done eveything possible to "clear my good name". Especially if I had the financial reserve to fight. (AB received a pretty substancial amount of money from Boston Scientific last year. The amount was disclosed on the web in the buy/sell agreement). However, I'm a fighter, and when I'm falsely accused, I'm going to fight to clear myself, my name and my reputation. But, that's just me.

As far as the response of AB "In the best interested of our consumers"...again prudence tells me to keep my opinion to myself. The one thing I will say....when a device fails (and I'm not even going to begin to address the failure related to the moisture issue. I have VERY strong feelings about that and I AM going to keep my lips zipped on that one. Sometimes being "prudent" is tough). ANY failure is a HUGE problem, but when it's related to a BASIC issue, that would have been detected had the device simply been tested PRIOR to leaving the would have been caught. Period.
(I'm talking about the basics. Like a car company not starting an engine to see if it runs before sending it to a customer who special ordered the vehicle).

I know I keep going back to the car as an example. I do so for a reason. We are a pretty safety minded society. We wouldn't get behind the wheel of a 6000 pound machine if we knew if was unsafe. We count on the auto companies to build a car that is safe for those driving, being transported and traveling along side it. If we are that careful as a society about the safety of our transportation we should be even MORE vigilent about the saftey of our medical devices.

I'll close on one final thought:

Medical devices of ANY kind, not just class III, are designed to improve, safeguard, enhance or even restore life....and HOPE for millions of people everyday. The vast majority of them do just that. Millions of people are alive because of these wonderful devices. People hear, see, eat and breathe because of them. Whether it be a heart lung machine that keeps someone alive during open heart surgery, or a simple IV catheter that infuses life sustaining fluid and medication into a premature baby fighting to stay alive, or a cochlear implant that has given a deaf person the ability to perceive sound.

However, that being said, the companies that manufacture these products have a RESPONSIBILITY to do everything in their power to ensure their products are safe and DO NO HARM. Every now and then, something unforseen and unpreventable happens. It's tragic, and an ACCIDENT. However, when these companies decide NOT to follow the safety guidelines, the Federal Laws and something happens then they SHOULD be held accountable.

More Zen:
Who obligates you to follow the highways of thought, traced by philosophers or by great psychoanalysts?
Sometimes, on the smaller streets, simple and real people can speak of their own truth.

Saturday, July 19, 2008

Cooool: Gettin' A (New) CI on MTV 1PM on SUN.

MTV to give once-deaf teen a starring roleEpisode will focus on Vernon boy's cochlear implant experience

*Note from me...before reading the article - ponder the title (Um, I'm not too happy about it)*

It was a major milestone in Chris Bryson's young life.

The Sussex County teen, who was born completely deaf, received a cochlear implant and had the device activated a month after surgery this spring at the Atlantic Rehabilitation Institute of Morristown Memorial Hospital.

In the days and weeks that followed, the 16-year-old learned to adjust to a new sensation -- hearing for the first time.

All while the cameras were rolling.

Chris, who lives in the Lake Walkill section of Vernon, will be featured in an episode of MTV's "True Life: I'm Deaf" airing on Sunday.

The award-winning documentary series, which showcases real-life stories of young people, shot the episode last winter, offering an intimate look at Chris' life before and after surgery.

Filming took place over six weeks at various locations, including at Chris' home, at Morristown Memorial Hospital and at Mountain Lakes High School, where Chris will be a junior in September.

The school has a program where hearing-impaired students -- who once attended the Lake Drive School of the Deaf in Mountain Lakes -- can take mainstream classes.

Chris, who was familiar with "True Life" and MTV's other reality shows, was one of two individuals selected for the episode on young people receiving cochlear implants and learning to hear.

"I was pretty stoked," Chris wrote in an e-mail to the Daily Record. "I've seen (the shows) all the time and I imagined what it would be like if I was on a show that everyone can see. I can't believe this is actually happening ... I feel like a celebrity right now."

Marshall Eisen, executive producer of "True Life," said the one-hour episode fits the series' primary focus on the experiences, niches and subcultures in the lives of young people.

"True Life: I'm Deaf" features the lives of both Chris and Amanda, a 22-year-old college student in Maryland who also was born profoundly deaf.

"This was an idea that came up that we thought would be really interesting -- to see how people who are deaf navigate through life, through the world," Eisen said.

"It's just a really kind of deeply felt emotional topic that has a lot of visual and sort of experiential moments that can make for compelling TV."

Chris' story fits the series profile, Eisen said.

"He had this quite interesting story of receiving a cochlear implant and allowing us to be there through that process and see what happens," said Eisen. "It's a pretty extraordinary moment, to see him hear ... to watch him take on this ability that most of us take for granted."

David Bryson, Chris' father, said his son -- the second-oldest of five boys -- received his first cochlear implant at the age of 7. The first device, a 1.2 model, was defective and emitted a constant whine before it stopped functioning, David Bryson said.
At that point, Chris stopped wearing the speech processor attached to the implant, but he was only able to communicate through sign language for years, said Gina Bryson, Chris' mother.

"When he got to be older, and more like a teen, his desire to communicate verbally kept increasing," she said. "His own desire was to have a device that works."

The Brysons learned that Advanced Bionics, the California-based manufacturer that supplied Chris' first cochlear implant, would replace the device with a more advanced model for free.

The company, which creates state-of-the-art hearing technology, also agreed to pay for Chris' surgery to have the new implant installed and activated, said Gina Bryson.

After Chris decided to have the surgery, the family learned of "True Life: I'm Deaf" through Advanced Bionics.

MTV had contacted the company, seeking individuals ages 16 to 24 who fit the bill, and also issued a casting call.

Three weeks before Chris was scheduled for surgery for the new implant, Gina Bryson e-mailed and sent photos of Chris to the network. MTV responded immediately, requesting permission to film, she said.

"It all happened very fast," she said. "The next thing we knew, they were here, filming."

New York-based Gigantic Productions, which produces the show for MTV, sent a two-woman crew to the Bryson home and then to the Summit Medical Group in Berkeley Heights, where Chris underwent surgery for the implant in February.

The cameras even captured some squirm-inducing moments, such as the incision that Dr. Jed Kwartler made in Chris' skull, right behind his ear, to install the implant, said Gina Bryson.

"I was a little uncomfortable initially, but was willing to do it for the sake of what we were doing," she said. "I just felt that it was something people should see and rejoice with us."

Following the surgery, Chris let the incision heal before heading to the Atlantic Rehabilitation Institute at Morristown Memorial for activation, or mapping, of the new implant for two days in March.

Christine Hoffman, lead audiologist at the Atlantic Rehabilitation Institute, said the Harmony model implant that Chris received processes sound more efficiently and is more frequency-specific than the 1.2 implant he previously had.

Mapping the implant requires measuring a patient's level of sound and discerning the comfortable decibel level, Hoffman said.

Hoffman, who also programmed the first implant that Chris received as a youngster, said she was conscious of the cameras recording her every move but was only asked by the producers to explain certain procedures.

"In the beginning, of course you're nervous that people are filming you," she chuckled. "But I totally forgot that they were there."

For Chris, the filming experience was "pretty fun," especially following his surgery when he engaged normally with his family and friends at the local basketball courts and skateboarding park.

Months after his surgery, Chris is happy with his new implant and is looking forward to speech therapy when school resumes in September.

"I just love everything about it and it helps me hear a lot ... it's more improved," he wrote in his e-mail.

"But it's pretty difficult because I haven't been practicing (speech) in a few years without the cochlear implant. ... Right now I'm working on it, and I'll always try my best no matter what."

Filming "True Life" gave him "the best courage and faith," he said.

"I'm so happy that everyone can see what deaf life is all about, and I hope they can understand deaf people," he wrote. "I think it's gonna be different seeing myself on MTV ... It's pretty wicked, man."

Friday, July 18, 2008

ASL-CI USER Heading for Harvard: He Thanks his Mom:)

A typical summer day in Grosseto lasts approximately three years, so when I don't post for a day, it's like I've missed a lifetime. One of the moms on the Circle posted this article, and I just wanted to share it, because it is yet another inspirational story...

Graduating St. George’s School senior turns stereotypes about the deaf on their ears

01:00 AM EDT on Wednesday, June 18, 2008

Editor’s note: Westley Resendes, of Middletown, graduated from St. George’s School on Memorial Day and is off to Harvard University in the fall but his story is much more complex. He tells it here in his own words.

I’ll start from the beginning: I was born profoundly deaf, and could not hear anything at all — not even if a 747 jet took off right over my head.

I would not truly hear until I was nine years old. When I was six, my parents inquired about a cochlear implant for me. At first the doctors were hesitant about my age, feeling that I was too old to benefit from it. Yet my parents still fought for my opportunity to hear.

The doctors from Children’s Hospital in Boston finally agreed to meet me and see if I was truly a viable candidate for a cochlear implant. Once they did, they realized that my lifelong dream was always to be part of the hearing world and I got my first implant in 1998, but my body rejected it.

I was sick for quite a while and eventually had to have it removed, taking away the newfound hearing I had had for only six months. However, the doctors, surprisingly, were willing to give me a second chance when I was 9, and in 1999 I heard successfully when my speech processor was activated.

My mom saying, “I love you,” was the first thing that came into my once-silent ears.

I wept because of the pain of the sound flooding the previously unused ears and, simultaneously, because of the joy that I had finally succeeded in my dream.

However, just because I could hear didn’t mean that I would necessarily understand everything. I had been attending speech therapy since I was six years old on a weekly basis — and still do today — to work on my listening and speaking skills. Even today, when the speech processor is not on my head, I cannot hear anything — not even my own voice.

However, I do not think of myself as deaf, as people tend to classify me.

I have always viewed myself as hearing impaired, but I can hear, just like everyone — only a little differently.

I attended the Rhode Island School for the Deaf (RISD) in Providence from kindergarten through third grade full time, as I couldn’t hear at all.

In the summer before fourth grade, I received my cochlear implant, and there began my journey into the hearing world.

I began to attend Community Preparatory School in Providence part time in fourth grade (spending the rest of my time at RISD) with the help of a sign-language interpreter.

Over the next five years, the balance of my time would shift to Community Prep; and by eighth grade I only went to RISD once a week to serve as director of periodicals in the school library.

Before I graduated from Community Prep, I began my search for high schools. I was primarily interested in staying closer to home, as I was not enthusiastic about the hour-long bus rides I had taken to Providence for the last nine years of my life.

I recall meeting Peter Anderson, an admissions officer at St. George’s School, at the high school fair at Community Prep. My dad and I asked whether it would be OK if I had an interpreter for classes at St. George’s.

Contrary to the reactions from officials of many other schools, he immediately showed great enthusiasm and acceptance for me and assured us that an interpreter would be perfectly fine. At that point, I knew that St. George’s was my dream school. I ultimately decided that I wouldn’t apply anywhere else. Fortunately, the admissions office at St. George’s liked me too, and they decided that I would be a good fit for their close community.

I have to mention my mom, who has been truly the most important factor in my success.

When she found out that I was hearing-impaired, she took it in stride and resolved to raise me the best way possible. She sacrificed everything for me, and became my first and most influential teacher. She helped me to start speech therapy when I was six and she made the decision to apply for a cochlear implant. I would not be in the hearing world — at Community Prep, St. George’s or Harvard without her. I owe everything to her.


I went to St. George’s knowing no one at the school except my interpreter — Michele Neiley, whom I had the luck to work with since sixth grade at Community Prep. My new classmates were curious to see an additional adult in the room, signing to a student who happened to have a funny thing on his head (the speech processor for the cochlear implant).

I got through my first academic day fine, but then I was left alone for the required sports period. My interpreter would only be with me for the class day, not after school. I did not know this, so I was somewhat lost. I decided to manage football, as a doctor’s note barred me from playing contact sports because it posed too great of a risk to losing my hearing (by a head collision).

The football coaches were eager to take me under their wings and show me how to do things. Their investment soon paid off. I immediately enjoyed managing, knowing that my contributions would help the team for the better.

A strong memory of my first day at St. George’s was the freshman picnic outside Diman Hall (the freshman boys’ dormitory). That was my first social, non-academic, interaction with my classmates.

I recall that a circle of boys surrounded me and began to pepper me with questions like, “What’s that on your head?” and “Can you read lips?” With the help of a new friend that I had just made, I was able to explain who I was. They immediately met my response with remarks of enthusiastic interest, and I felt at that point that I had made the right decision to attend St. George’s.

From that very first day, I was accepted there, and that is the one thing that I will miss the most about the school. It is a very close-knit community and you will meet practically everyone on the campus at least once. The overall sense of acceptance of everyone there is truly incredible.

Later that week, I was walking by the chapel to [teacher] Doug Lewis’s geometry class and this very old, old man approached me over the hill, like the Ghost of Christmas Past.

It turned out that he was the conductor of the brass ensemble, Tony du Bourg. He pointed at me, and said, “Hey! Are you that West Resendes boy?” I timidly whispered yes. He said, “I want you to play music!”

I laughed, but then thought, “Okay, I’ll do it,” — primarily to make this man happy and secondly, to see if I could really do it.

I’ve always wanted to disprove stereotypes. Here is a piece of advice I always give out: Never allow a stereotype to define you. That’s why I joined the brass ensemble, that’s why I gave a speech to the whole school when I ran for senior prefect last year (and lost) and that’s why I gave a “chapel talk” in April of my senior year.

All of these were challenges that I overcame.

Once Tony du Bourg met me, I started out on the cymbals and I would play for chapel services (the school meets in chapel twice weekly, once for a formal Episcopalian Mass, and once for a senior chapel talk).

After a month, I started taking lessons on the baritone horn — which is a slightly smaller version of the tuba — and I’ve played both instruments for services as the only dual-instrumentalist for the brass ensemble for the past four years. (Sometimes, I had to use both instruments in the course of one song — there would be some quick instrument changes!)

I ran for senior prefect, which is St. George’s version of student government. There are 5 senior prefects selected from a field of usually 30 candidates through a school-wide election process.

I decided that I should run, regardless of my disability, so I would know that I had pursued my goal of “sameness” to my fullest.

I spend a month or so preparing my speech, practicing it endless times. The moment came and I was assigned the first speech of the night. I had never spoken to an audience of 350 students before and I must say that it was slightly intimidating, but rewarding at the same time, because for that moment everyone was listening to me, the first hearing-impaired student to attend St. George’s, give a speech on why I should be their senior prefect.

As I spoke, the pit in my stomach began to dissipate and that rousing feeling of success took its place. I had defied everyone’s expectations in speaking, in expressing my opinions in a public arena. Apparently, enough students understood and valued my message of student-faculty communication to propel me to the coveted Top Ten candidates through their votes.

In the end, I didn’t get the spot but it prepared me for the annual rite of passage for seniors — the chapel talk. Just like any other St. George’s senior, I was to have an opportunity to tell my peers about my journey.

I began penning my chapel talk months before I was scheduled to speak and I practiced it countless times in speech therapy.

When the day came, I chose “Amazing Grace” as the hymn to be sung that day, and after singing it, I walked up to the podium of the chapel.

Looking upon my audience of about 400 people, including students, faculty, staff and my parents, I felt wonderful.

I began my talk with a moment of silence, lasting a scant 15 seconds, so that the school community could have some idea of what it was like for me for my first 9 years. As I spoke my words, my peers listened to me attentively. As I concluded my talk, the school community rose from their seats and applauded for me. It was a truly wonderful moment for me.

I participated in a good number of extracurricular activities, and those certainly are my hobbies and interests. In the fall, I managed football and in the spring it was baseball. This spring I had a small moment of glory when I pinch-ran for a batter for the last home game against Thayer Academy.

Unfortunately, the batter after me grounded into a double play, but it was truly a pleasure to have a small taste of a varsity baseball game.

In the winter I served on the stage crew for the musical. That was truly a pleasure, as I was able to get my hands dirty with power tools and help to construct a fully functional set for the actors and actresses.

I had a cameo role in the musical every year, served as property master for junior and senior years, and was captain of the stage crew my senior year. I’ve written feature stories for the school newspaper for the last three years. I also was head of the Young Liberals Club this year and was a day prefect (a mentor for younger day students) for the last two years.

I expect my academic focus at Harvard to be on biology and neuroscience because it will help me toward my goal — one that some may call lofty.

One in every thousand people in the world has a problem with their auditory system. I am one of those people, and I want to change that.

I’ve kept a close eye on the development of the controversial research of stem cells and always wondered, could stem cells help us hear again?

I want to find a nonmechanical solution to help the hearing-impaired. I currently depend on a cochlear implant, which is a technological achievement in itself but I want to do better.

I want to be able to plant stem cells in the cochlea of the inner ear in place of the broken hair cells that are the most prominent cause of hearing impairment. My hope is that if stem cells can live up to the vaunted expectations, they should be able to regrow into hair cells, and restore hearing among millions.

I hope to work at the Stem Cell Institute at Harvard and just jump into the research that they are already conducting on stem cells and the regeneration of hair cells. College will be a continuation of my boundary-breaking journey, and I plan, just like stem cells, to live up to my own expectations.

Wednesday, July 16, 2008

Advanced Bionics Complaint...and Letter RE: FDA Settlement

Two months after my post FDA Seeks to Fine Cochlear Implant Company, a reader, Kimberly, posted the following comment:

I had my first AB implant done on the right in August of 2005. It worked great for a few months, then I started "hearing" loud popping, sounds like paper crinkling and the power cutting in and out. The device was failing. In December 2006 I had my left implant done an the right was a hit and miss. From the moment of activation the right didn't work right. A few electrodes were shorted out. I ended up having a bilateral revision done in March of 2007. The results, the right failed due to moisture and the left due to electrodes shorting out.

Both AB products, made by two different manufacturers. I am the first bilateral failure the clinic I went to has ever seen. Not to mention a bilateral failure for two entirely differnt reasons. The implants I have now are stll AB. Frankly I didn't want to use AB again, but my insurance wouldn't cover the other. As a result of the revision surgeries I lost what little natural hearing I had left. The blogger that said AB and the FDA are working this out...yep they sure are the FDA filed a 2.2 million dollar law suit. Sadly, the highest amount they could ask for. My opinion. AB got greedy and cut corners. At the expense of the very people they were suposed to provide a service to. They never even notified the FDA that they were using Vendor B, as Vendor B had not been approved by the FDA. If you want interesting reaading read the actual warning letter the FDA sent to AB and the lawsuit filed by AB. They can be read at

I have never posted on a blog, but after reading some of the comments I was moved to do so.

Those who are saying that the whole AB fine is directed at something in the past are completely mistaken. It started in 2002 and AB continued to ship devices without the proper testing manufactured by a non FDA manufacturer until 2006. The proof is in the FDA lawsuit filed recently. Again take the time to read all the information. AB didn't even notify the providers they had shipped the defective implants to...again do the reading. The FDA letter to AB spells it out as does their lawsuit. I can guarantee we will all be reading about private lawsuits being filed.

As a AB receipient it's sad to say I can't recommend their product. I know what I've been through and am continuing to go through as a result of their poor QA/QI programs. While I certainly don't wish what I'm going through on anyone, I wish it had happened BEFORE I made my original decision on which company to go with. It certainly would NOT have been AB.

May 28, 2008 3:14 PM

I debated for a couple of weeks whether or not to post this comment. Then, at the NHS 2008 Conference I met a gentleman who works for Advanced Bionics, who suggested that I email him the complaint and he would send me some type of response. I sent him the complaint two weeks ago and still haven't received a response. I am not a very patient person, so I apologize for not having waited another two weeks for a response.

I will assume that the letter issued by Advanced Bionics on July 14th is a sort of response. It was issued here, I'm going to re-write it because I can't copy it from the pdf. Here goes...

Dear Patients and Professionals,

Today, Advanced Bionics agreed to settle a matter with the U.S. Food and Drug Administration (FDA), resulting from a decision we made in 2003. That decision concerned a determination that no formal FDA submission was needed when we added a new vendor (Vendor B, later terminated in March 2006)to our manufacturing operation. Four years later, in 2007, the FDA filed an administrative complaint against us stating the FDA's belief that a formal submission should have been filed. We responded to the Agency, pointing out that it had already approved both vendors when it approved the system.

While we do not agree with the FDA, we do believe that accepting its terms is in the best interest of our patients, our company and our need for a long-standing relationship with the Agency. So, we have decided to settle the matter, with the company paying 1,1 million dollars, and me, as CEO, paying 75 thousand dollars.

Over the years, we have increased our focus on the reliability of our entire implant system. At present, our internal device (Vendor A)has a 2 1/2 year CSR of 99.1%, and our external product durability leads the industry. That being said, we expect that the quality of our products will only get better in the years to come.

As we move forward, we are stronger than at any moment in our history: singularly focused on cochlear implants, well funded, possessing better leadership in key positions, and having a strategic plan built around patient care.

We very much look forward to continuing our partnership in this community. Please call me if you have any questions about these or other matters.

Very Sincerely,

Jeffrey H. Greiner
President and Co-CEO

*Wonder how Kimberly will take the news...*

Monday, July 14, 2008

Would You Take A Pill To Become Hearing?

Ok. Josh Swiller is HOT. His writing style is a HUGE turn on. People on the beach where I go here in Grosseto know that I'm a lunatic, but now they think I should be committed. Between beach volleyball games, I can be seen randomly laughing aloud, weeping or gripping my beach-chaise at any given moment of the day as I devour Swiller's THE UNHEARD. Yes, I know I've been reading it for the past five months, but if you've read the blog, you know I've been rather busy...and actually, I'm not convinced I want to finish it, I'm enjoying reading it so much.

On page 160 (I'm making progress), Swiller writes:
"When I was at Gallaudet," I said, "living with other deaf and hearing impaired people, the school newspaper had a survey: if you could take a pill that would make you hearing, would you take it?"
"The vast majority of the students said no. They were happy with their lives."
"And you?"
It was a hard question to answer, now more than ever, which was why I brought it up. "I don't know. If I say, 'Yes, make me hearing,' isn't that some kind of failure of will? Does it mean I couldn't find happiness with all the gifts I've been given? I have money, family, education, hearing aids, and I didn't grow up in a shack in the bush. Shouldn't that be enough?"
"There's nothing wrong with wanting more," Maria said.
"Yeah, but here's the thing," I said. "I've already taken that pill. I'm no longer deaf."

Swiller writes how he "discovered a place past deafness and hearing in Mununga."

*Powerful shit*

This book is quite an experience for me- it provides me with profound insight as to my son's current journey and future journey...and it raises questions that I need to answer for myself...Is there really nothing wrong with wanting more?
Maybe it's just a deeper question of truly appreciating what we have.

Josh Swiller posted this exciting news on his June 17th blog:
In a little more than a month, I’ll be moving to Washington, DC. I will be a visiting professor at Gallaudet. It’s been a lot of work arranging this position and I’m excited about the opportunity. I’ll be teaching a class, mentoring aspiring writers, and bringing in interesting folk for guest lectures, but aside from all that, the main thrust of my work there will be first, to help bridge the gap between the signing and speaking deaf communities; and second, to help develop a program at Walter Reed for deafened veterans.

Saturday, July 12, 2008

Deaf Peddler Number 2

I'm stuck at home on a hot as butt day here in Grosseto, because my kids were too tired to go to the beach. We are the ONLY idiots in Grosseto sitting home. Of course, now they're bored and driving me crazy, so I'm seeking shelter in my blog while Jordan complains and paces and Lola pees all over the house.

Last night, Luca and I went to dinner in Punta Ala, a touristy beach town about twenty-five minutes from where I live and began discussing all of these recent developments that have occurred since the NHS 2008 Conference. I started running down my list of ideas about how to "change the world," when a Deaf Peddler dropped off one of the typical cards stating: "I AM DEAF. I am not asking for handouts, just a little bit of assistance from you to be able to live with dignity in this society. I would like to offer you these objects for the price of 4.00 euros (each)(if you would like to offer additional assistance, that would be up to your good heart)"

I didn't feel the need to vomit this time...I just felt really sad. This young man was from Russia, he sprinted around the restaurant quickly dropping the cards and items from table to table and then quickly collecting them. He was working hard. We bought the brightest flashlight I've ever seen for 5 euros. And he went on his way.

Nor did I feel sorry for him, because he was working hard and actually looked satisfied with the work he was doing. I just didn't want or envision that future for my son.

We are extremely fortunate to have access to excellent healthcare, free healthcare. My son has opportunities that people in smaller countries do not have. I will be speaking at a conference in Bulgaria in September regarding the fact that raising a Deaf child is a 50-50 shared responsibility between the Health Professionals and Parents- I'm very curious to see that healthcare reality. (and Bulgaria *smile*)

Choosing to provide Jordan with amplification was a no-brainer. Choosing the cochlear implant was a very difficult decision, because of Jordan's individual situation. However, I wouldn't think twice about implanting my twelve month old child and yes, teaching the child sign language as a bridge where necessary.

I had a conversation with our child psychiatrist who gave me a Powerpoint presentation he had prepared for a speech on Pre-School Aged Deaf Children: Oral Methodology or a Global Approach? He wrote: Only a global approach that recognizes the necessity to amplify, other than the linguistic competencies, also the communicative, cognitive and intercommunicative competencies guarantees the harmonic development of the deaf child.
Only a global approach that favors the proper integration and consistent monitoring of the language acquisition process by means of holding meetings, discussing programming and evaluating work performed by the many professionals involved in the process guarantees a context in which it is possible to carry out all specific training necessary for acquiring vocal language.

I really don't think the Russian guy peddling's parents had access to a healthcare system or health professionals like ours in Italy or my child psychiatrist, who were willing to approach deafness and the deaf child...globally.
Although, maybe I'm wrong.

Thursday, July 10, 2008

RE: Wanted: Strong, Neutral Parent Organization: H & V

In Jamie Berke's Post: Wanted: Strong, Neutral Parent Organization, she cites Hands & Voices:
Fortunately, there IS one parent organization that comes right out and cites on their About Us page all the communication methods as being supported. This page states "We are parents of ASL signers, cued speech users.... parents of kids with cochlear implants or total communicators..." There is one parent organization that combines the advocacy and perspectives of AGBell, DBC, and the NAD. That organization is Hands & Voices. (
I am not a member of Hands & Voices, but I know about the organization.)

*Jamie...please join*

Life is so strange sometimes, especially this past year and a half has been composed of bizarre coincidence after life-altering coincidence, so that Nothing surprises me anymore. My one published article was for The Communicator, a Hands & Voices publication. When I spoke at the NHS 2008 Conference, I met the Executive Director of Hands and Voices. I am now collaborating with a non-profit Research Organization here in Italy that will give me the opportunity to establish literature for the purpose of educating Health Professionals and a booklet for parents of newly diagnosed DHH children. Given my experience with my son combined with various debates and interactions with the Deaf Community, the Hands & Voices philosophy represents the approach I intend to utilize in presenting this information.

The H & V Way:
Hands & Voices is a nationwide non-profit organization dedicated to supporting families and their children who are deaf or hard of hearing, as well as the professionals who serve them. We are a parent-driven, parent/professional collaborative group that is unbiased towards communication modes and methods. Our diverse membership includes those who are deaf, hard of hearing, and hearing impaired and their families who communicate orally, with signs, cue, and/or combined methods. We exist to help our children reach their highest potential.

Methodology choices must be selected based on the needs of each individual child in each individual family two are alike. The concept of focusing on the child as a child first and foremost and not letting Deafness define the child or the family allows that family to prioritize their agenda from the beginning of their journey. Those first few steps tend to be wavering, however with strong support, in the form of Parent-Parent Support, those steps tend to become just a little bit more confident. A confident parent means a secure child.

The Hands & Voices website is a wealth of information. Check out their Guide By Your Side Program here:

"Guide-By-Your-Side (GBYS) is an innovative program designed to provide emotional support and specialized knowledge from trained parents of children who are deaf or hard of hearing."

They organize leadership conferences and their leaders, knowledgable parents, speak at professional conferences to provide a parent's perspective on issues such as Early Hearing Detection Intervention Strategies, Genetics, the Parent-Professional Relationship, etc.

And just look at who one of their leaders is...Karen Putz, our very own Steak and Shake Queen:
Illinois Hands & Voices Chairperson
Karen Putz is profoundly deaf and is mom to three deaf and hard of hearing children. She holds a B.S. in Counseling and M.A. in Deafness Rehabilitation Counseling from Northern Illinois University. Karen is currently employed as a Deaf Mentor in early intervention and a substitute teacher for various deaf and hard of hearing programs. She teaches Conversational Sign Language at Joliet Junior College. As Chairperson of Illinois Hands & Voices, Karen's interests lie in parent networking and education. She serves on the Illinois Deaf and Hard of Hearing Commission Task Force on Communication Options.

*Gotta love any organization with Karen Putz*

Yes, I have found a place that represents my ideology in combining choice with strong parental support...think I'm just gonna have to establish a Chapter here in Italy. My To Do List is getting rather long, but I'm a motivated Mamma.

Wednesday, July 9, 2008

Deaf Couple Gets CI : Abbie's Experience


Contrary to how she bowls, New Jersey Cover Girl Cochlear Implant Advocate, Abbie, (who we ALL know and LOVE) NEVER talks out of her Ass...

Abbie left this thoughtful comment on my post: To Implant or Not To Implant a Child Who Has Never Been Amplified (Note: One day...we will hang out, and it will be UGLY!)

I want to inject a comment because of what I saw at this past convention. I had the opportunity to meet many people that have been deaf all their lives and decided to get a CI. Many of them were simply curious to see what makes a sound, they communicated through ASL and they did not speak. I came upon this couple who has never heard a single sound, but they decided together that they were going to get a CI. And they did, together, same day surgery.

Mind you this is just one of many "Lanes" that I met but I was drawn to this particular couple. They reminded me of the couple in "Hear and Now." I latched onto them and asked them what made them decide to get a CI after being unable to hear for the past sixty years. They told me they just wanted to hear sound. Their expectations were very low because the doctors and audiologist stressed that the benefit to someone who has never been amplified is low. They were put through psychiatric session to prepare themselves. They forged ahead not expecting miracles.

They still cannot speak but they are happy with what they can hear. Is that a benefit? Absolutely! I asked them whether the technology was around when they were younger, would they have gotten the CI knowing that the benefit would have been just the same?

They said yes but they might have not stuck with it because of the transition period of learning how to hear.

It has been said that you can never measure the success of someone else's cochlear implant journey because it is personal, but they were happy with the benefit that they did get.

They represented the grown up versions of the 14 year olds that you are talking about. They were placed in a setting where they were "mentally prepared" with a psychiatrist on what to expect. If this same technique could be used on parents to mentally prepare them on the limited expectations, I would say yes. If this type of support structure were not implemented, I would say let the child make his own decision when of age.

July 8, 2008 7:59 AM

Tuesday, July 8, 2008

Complicated...and Uncomplicated

Adults are complicated. Kids are not. Adults play brain games, kids play games with their hands. So why is it that so much of what makes an adult complicated always goes back to his/her childhood?

Sofia was outside the other night playing Charlie's Angels Tag. Did you know that such a thing existed? I've heard of TV tag, Diaper Tag and Tag Tag, but never the Charlie's Angels version. To avoid being tagged, Sofia had to whip out a fake gun and say "Pow!" to shoot the tagger. Interesting. I kind of laughed my butt off - watching and the whole episode brought to mind my very first sky-blue Charlie's Angels Huffy Bike. Lived for that only bike. I feel too tall sitting on top of a bike, so I avoid riding them. Let's not even discuss the fact that when my kids think Charlie's Angels, they mean Lucy Liu, Drew Barrymore and Cameron Diaz...that is SO wrong!
Jordan is entering the complicated age of adolescence, not quite a child, not quite an adult. At this age he finds some kids who are more like teens and some who are still hanging on to their innocent youth. Basically, some of his friends are sucking face in the halls, while others are chilling playing Yu-Gi-Oh cards. Jordan, I think, would like to be sucking face in the halls, but settles for playing cards.

Parents have high expectations for their kids and always expect more. Last night we were driving in the car and Jordan said, "Mom, I know what I want to be when I grow up."
I asked, "And what would that be?"
Jordan replied, "A Butler."
*Of all the jobs in the world, a freaking butler, my son who can't even put a toilet seat down after he takes care of business!*
"Um," I said, "Jordan, God gave you brains and a big mouth, I think these qualities might be just a little wasted should you opt for the Butler profession...Why the hell would you want to serve other people when you can't even serve me?" *smile*

Jordan ruminated.
He changed his mind and decided he wanted to own a Newspaper Stand. Unacceptable. Exchanging papers for money all day is a waste of my child's brain. He said, "But they have a break from 1 - 4, so I would have some free time."

Please, please don't let me have a lazy son who lacks a will to achieve and reach a little higher. Although, maybe such a lack of drive would render his life much less complicated. I don't know. The only thing I know is that we finished the conversation with him prepared to go to the university to study Engineering ready to contribute to the world.

*Much more the American Way*

I always thought I was such an easy-going, down-to-earth, laidback American Mom in Tuscany. I'm not. I'm one complicated, confused American Mom. Sometimes finding the answers requires studying uncomplicated kids.

Meet Adam Bender (sorry no captions, I have to leave now, by the end of the summer, I will figure this out - also because Rachel's coming to teach me)This is an amazing child who is teaching so many children and parents how truly uncomplicated life can be when viewed through the eyes of a child.

Adam Bender, 8, is one of several kids who plays catcher in Southeastern’s rookie league at Veterans Park. What makes Adam stand out is that he plays one of the toughest positions on the field with only one leg. Because of cancer, he had his left leg amputated when he was one. Adam doesn’t use a prosthesis, and only uses crutches when he reaches base for the Astros.

Monday, July 7, 2008

CI Parents' Choice Medical Professionals: And Yours?

I asked the Pediatric Cochlear Implant Circle for a list of speakers: Medical Professionals who "get" the Parental Support Component of Intervention, and would like to post the names. Parents attend conferences, meetings, classes, groups, etc. to become more informed on issues regarding their child's (children's) deafness. So, I would like to give credit where credit is due, meaning that the following speakers, in some way, have touched the lives of these parents. Please feel free to comment the name of a Medical Professional who has touched your family in some way:

Dr. Mary Pat Moeller

Dale Atkins

Christine Yoshinago-Itano

Carol Flexer, PhD, a professor of audiology
from the University of Akron gave an excellent talk at the AG
conference called, "Facilitating Emergent Literacy." I thought she
did a fantastic job of speaking both to professionals and parents.

Jane Madell, PhD, Director of the Hearing and Learning Center at
our center, New York Eye and Ear has been a huge advocate for
newborn screening in the US. She just gave a talking in Texas
called, "Closing the Gaps in Pediatric Hearing Loss, Identification
and Management in the 21st Century."

A very good friend of mine recently completed a dissertation on family
decision making in response to newborn hearing screening. She's an
audiologist/deaf educator who has worked with families in a variety of
early intervention contexts and has just accepted a position as the
clinical director of an AV therapy center here in the DC area. She's
also fluent in ASL and the mother of two Deaf children with CIs who
didn't benefit from newborn hearing screening (they were adopted
internationally as toddlers). She's a great speaker who really "gets"
these issues from all sides!
Her name is Sarah Dawson Wainscott

I just read your post and a name quickly came to mind.? The woman's name is Mary Koch and she resides in Maryland. She does national presentations and is also connected with Boys Town. I have heard her speak many times and her presentations are wonderful.. She does a great balanced presentation. She started the cochlear habilitation program at Johns Hopkins years ago and she is known for the video she did called Celia's story.

Judith Marlowe, Ph.D. She is an audiologist who was one of the founders of Auditory-Verbal International. However, in the past decade+ she also spearheaded the efforts in the U.S. for universal newborn hearing screening and was instrumental in getting it passed in the U.S.

Another one is Warren Estabrooks, who is a fantastic speaker. I’ve heard him speak a couple of times. Parents adore him. He was a Cert. AVT in Canada for years but now I think mostly just travels and speaks and helps others. He’s written several books for parents and professionals, written so that parents can easily understand them and were probably written more for parents than professionals.

There's Marilyn Neault, director of the CI program at Harvard’s Boston Children’s Hospital. She’s been in the field for years, is responsible for pushing to get the CI program started at Boston Children’s, and is incredibly dedicated to and adored by parents. She has been on the cicircle for years, almost since its inception, because she wants to be responsive to parents. Along with Larry Orloff, an adult CI user who used to be the editor of CICI’s Contact publication, she has been the leader and organizer for years of the Northeast CI convention that occurs every other year in the odd years at Sturbridge, MA, and is easily the best regional CI convention in the U.S. It draws close to 1000 people now, including many from outside New England. Marilyn and Larry put together a program that is geared towards everyone, parents, children, professionals, etc.

*And then, of course, there would be my personal choice, although I've never heard him speak...Josh Swiller *smile**

I would like to see the list grow, so if you have any names you would like to add, please feel free to email me at or leave a comment. Thaaaaannnnkks!

Thursday, July 3, 2008

Making the System Just a Little Bit Better

Amy Cohen Effron left the following comment on my post "To Implant or Not To Implant a Child Who Has Never Been Amplified:"

Same here, and our challenge still lies:

How can we effectively communicate to the parents that their 'expectations' are unrealistic, and how can we help the parents to embrace the child's unique differences?

It happens a lot. Research done by CDC in 2006 indicate that approximately 46 percent of infants who were referred for audiological evaluation did not follow up or not having a formal documentation of their hearing loss.

Therefore, the time is lost on this child.

Because of what reason?

I can speculate few things:

1. Economic reasons (insurance coverage for audiological evaluation, or transportation to the clinic?)

2. Shock? Denial? Grief processes is not been followed up?

3. Lack of resources in that area?

4. Fear of unknown?

Then with this lack of follow up,the child will lag with their language development by age of 3 to 5, and it's harder when a child enrolls in school.

Then by that time, get implanted between 5 to 7 years old, would that help?

I don't think so.

Maybe parents are afraid with the concept of implanting 6 month old infant? This procedure does have some risks, no matter benefits may outweights risks.

It is very costly. Not many parents have health insurance, and it becomes an unfair advantage.


if these parents are able to follow up with that for whatever reason.

I pray hard that these parents are willing to take a free class on Baby Signs for their child. That is what American Sign Language can be used for the first few years as a 'safety-net' in case if this child cannot get an implant for whatever reasons.

Can we agree to see this way? Sign language? ASL (or other country's sign language) is not a dirty word anymore. It is a research-based valuable approach . Not an alternative, it is a viable approach too.

Amy Cohen Efron

Karen Mayes left this comment on the post "Mother Fights System to Get Help For Deaf Son:"

Oh boy... I see the hospitals need to develop resources (information sources, unbiased counseling, etc.) in place for any newborns, so that the parents would have information in hand, feel they are not alone and lost.

Anonymous left this comment:

And EVERYONE, especially doctors, audiologists, speech therapists, parents, etc., need to know that deafness does not always mean zero hearing, speech, or communication ability. Within our community is a lot of diversity in residual hearing, use of amplification, speech ability, signing ability, cultural identity, life experiences, cognitive functioning, and personality types.

We need to "Fix" so many things about the process to make it just a little bit better for the families now that the Medical Professionals recognize the importance of our role in rendering their job even more successful.

Surprise!(Thanks, Ferdi *smile*)...I have been asked to be part of the Steering Committee for the NHS 2010 Conference. My responsibility as "Ambassador" will be that of representing the importance of the collaboration between Families and Medical Professionals at the various stages of the families' journeys in Deafness from Newborn Hearing Screening Intervention Strategies, Diagnosis, etc. I will be sure to emphasize the need for quality resources...actually I may even be creating a few resources here in Tuscany...but that's another issue. Aboveall, however, I will act as a go-between for the International Coalition of Parents (ICOP) that is currently forming...lots of exciting things are happening.


Wednesday, July 2, 2008

You're Under Arrest...For Being a Kid

You know...nothing shocks me anymore at this point. The police just showed up at my house because our lunatic neighbor called to complain. This lunatic is certifiable. She curses at the kids, throws detergent from her terrace as well as water and tries to bully the...children. About a year ago, Luca had "a conversation" with her husband and they stopped their terrorist behavior. I had my own little "conversation" with her, when she dropped a bucket of water from her terrace that just missed Jordan and his 20,000 dollar ci processor. She got the "Isaaco hose treatment" as well.

Jordan, Sofia and the neighborhood kids were outside having a water battle in the 105° heat, you know, being kids. (I'd like to go to the beach, but I'm stuck in the house waiting for the arrival of the newest member of our family - baby kitten "Lola..." who was supposed to be calico Wendy, but she was too little - Tragedy-luckily Lola is on her way) The lunatic stepped onto her terrace, threw a bucket of water on the kids and started cursing. Everyone agreed that they would start playing outside again at 4:00 pm. to be considerate.

As I was sitting here sweating my butt off, Simone and Isaaco ran into the house to announce the arrival of the Police. I am in a period of no tolerance. I walked outside where I saw this poor Police officer in a stifling hot car with no air-conditioning waiting for his partner who went to speak to the lunatic.

I asked if by chance there was a law that prohibitted children from playing, having fun, being kids at 3:00pm on a hot as butt know, I am AMERICAN, I may have missed something. He said, "No, there's no law, but perhaps I should try to keep the kids a little more under control."

I said, "Nope."

Um. I refuse to tell my kids who are playing and being kids to control themselves at 3 o'clock in the middle of the day. I refuse.

Then, his partner came downstairs after talking to the lunatic and tried to tell me the same thing. I refused again. Geeze, someone has to protect the rights of our kids to be kids in a world of uptight adults...

The Police officers shook my hands, smiled and said, "Have a nice day."
I replied, smiling of course, "Same to you, Officers."

To Implant or Not To Implant a Child Who Has Never Been Amplified

Do you or do you not give the okay for a cochlear implant to a child over age 7 who has never been exposed to any form of amplification? Good question. My answer: NO. I spoke to an audiologist at the Gala Dinner of the NHS 2008 Conference and her answer was a resounding "Maybe." The gentleman sitting next to me, who worked for Advanced Bionics agreed with me.

We were discussing the case of a fourteen year old boy who really wanted a cochlear implant. He had excellent speechreading skills and signed, but had never worn hearing aids. His parents and this child, who really wanted a ci, approached this audiologist. Their reasoning for requesting the ci was not because they believed it would be an "instant fix," rather, the boy wanted to be exposed to sound. He wanted to know the "sound of sound." He wanted to be aware of background noise in the street, in restaurants: he wanted to "hear" music.

The audiologist assured me that the parents were provided with reasonable expectations, resources were provided and they were told again and again that their son would not acquire speech as he had never had access to the spoken word prior to the ci. I asked her if the parents had been given the contact information of other parents who had lived the same experience. She said, "No."

The parents told the audiologist again and again that they did not expect their child to speak...they were not expecting a "miracle."

I looked at the audiologist skeptically. Implanting a child who has never heard at age 14 will only be a delusion for that child and the family. That family, no matter how many pamphlets or how many doctors tell them that child will not speak...HOPES that their child will speak or they would NEVER go ahead with implantation on a fourteen year old Deaf child who signs.

The child received a cochlear implant.

Apparently, although the child is unable to decipher sentences and cannot speak, the child says that the ci assists him in speechreading and provides him with a certain tranquility with regard to environmental cues.

And the parents...???
They would like to know why their child still isn't speaking.

Tuesday, July 1, 2008

*WTF* Pissed Off...Again!

I have been somewhat absent for a couple of weeks, so I just started catching up on my blogs. Christina posted this, and here is what Jean left as a link on her blog. It could be the 105°heat and 100% humidity, or I might just be rightfully PISSED OFF at this little article...

Slow Deaf Child
June 29, 2006

Deaf Children = Wild Animals?: You’ve probably seen those yellow signs by the roadside that announce “SLOW Deaf Child” or “Caution: Deaf Child Area”. Are these signs really necessary? Deer, cows, and ducks may occasionally have their own signs, but do Deaf children need them? Deaf children are not wild animals. They can be taught how to play outside and cross the street safely. The problem is not that they are Deaf. The real problem is society - the attitude of parents, caretakers, and even some schools. They may believe that Deaf children need special treatment. They may lack fluent signing skills, making it difficult for them to teach and discipline their Deaf children. Or they may simply be too lazy to make an effort to teach about street safety. Any children - Deaf or hearing - who haven’t been taught to stay out of the street, should not be outside unsupervised in the first place. Putting up signs like these does nothing but spread the idea that Deaf children are disabled, helpless, or lacking intelligence. A far better solution is to teach Deaf children how to be independent and self-reliant, both of which will do a whole lot more for their self-esteem than a yellow sign.

*Note: the Italian word for this is "CAZZZZZZATE!"*
*The proper term in English would be "BULLSHIT!"* (*SMILE*)

This was Christina's reply to Jean's Blog:
Jean-I'm not sure if that blog link you sent me was meant to accuse me of being a lazy parent who lacks sufficient parenting skills to manage my kid. If nothing else, I hope these signs will help my neighbors in a very busy neighborhood be aware that there is a little boy on a trike that can't hear as well as the rest of their kids. We live in an area where people honk their horn as they back out. My son can't hear that. I do believe that my child has a disability, and I do everything in my power to make his life easier. His safety is always first on my mind. While he is NOT a wild animal, he is a toddler. A deaf toddler, who needs all the help he can get right now.

Then...Christina posted this:

Enough is Enough
This blog was always intended as a place to share my ups and downs as a hearing parent to a deaf child. It was designed to be a spot to highlight our journey, pass along tips and resources, and to just be a place where I could share the beautiful moments that I share with my son. I've met some amazing people, and formed some lifelong friendships through this blog. It has been a blessing in my life.

This blog was NOT designed to become a forum for the Deaf Community to ridicule and judge my decisions. Over the months, I received comments from people accusing me of raping my child by giving him a Cochlear Implant. My communication methods were judged. The choices I made, the things that I said, EVERYTHING was judged. Judged by a community that I so desperately want to be a part of and understand. In my post today about the Deaf Child signs that are being placed, I was pretty much accused of being a lazy parent relying on signs for my kids safety. It even accused me of treating my kid like a wild animal.

Congratulations, Deaf Community. You've just pushed another person away.

While I know that the entire Deaf Community is not like this, there are a few vocal and loud folks who always seem to find a way to rain on a Mom's parade. Who feel it's their place to tell a hearing parent how to raise their child. Who feel that somehow, they could do a better job than me. I've sucked it up, I've taken it all in stride. Until today.

Comments that were left on my blog today make me sick. They show just how divided the Deaf Community really is.

There's only so much of this I can take. I'll be moderating my comments for now on. I don't want this joyful site to turn into a hate-filled place.


Mother Fights System to Get Help For Deaf Son

Mother Fights System to Get Help For Deaf Son
By Brian Walzel
Published in the Tomball Magnolia TRIBUNE

The hours after a baby is born are supposed to be filled with happiness and elation, not shock and disbelief. Babies should be crying in their mother’s arms, not being run through a battery of tests. But that was recently the case for a local mother and her husband.

Luke Hrncir will undergo a procedure July 13 to install cochlear implants in the hopes that one day he will be able to hear and speak.

Less than 24 hours after Laryssa Korduba’s and husband Matt Hrncir’s first child, Luke, was born, it was discovered their new baby couldn’t hear and was ruled “profoundly deaf.”

It didn’t make sense to Korduba. Both she and her husband were healthy, there were no signs of abnormalities during her pregnancy.

“When a baby is born, the first question is, ‘Does it have 10 fingers and 10 toes?’ No one asks if it can hear,” Korduba said. “We didn’t know what to do next.”

Emotionally devastated, confused and distraught, the new parents left the hospital with their new child, but with very little direction and instruction as to what to do or where to go next.

“It’s a horrible thing to happen to new parents,” she said. “They sent us home with nothing. It was exceptionally scary.”

Over the next few weeks, as Luke failed a series of hearing tests, Korduba took it upon herself to find the help her son needed.

“My instinct was to figure out a plan,” she said. “People don’t realize the importance of getting help so early.”

After searching through the maze of the Internet, and finding several dead ends, Korduba and her husband discovered a non-profit organization in Houston, The Center for Hearing and Speech.

When asked why they chose the organization, Korduba said, “There’s nothing else.”

Early on Korduba and Hrncir realized there were two paths for Luke. He could either learn sign language and live his life never learning to speak, or somehow find a way to speak and live as close to a normal life as possible.

“We had two goals,” Korduba said. “We wanted him to speak and we wanted him to go to a normal school. If I want my kid to go to school and college, I want my kid to speak English.”

By working with the staff at The Center for Hearing and Speech, it was determined that Luke met all the requirements for a cochlear implant, a surgically implanted electronic device that can help to provide a sense of sound to a person who is deaf.

According to the National Institute of Deafness and Other Communication Disorders (NIDCD), cochlear implants bypass damaged portions of the ear and directly stimulate the auditory nerve. Signals generated by the implant are sent by way of the auditory nerve to the brain, which recognizes the signals as sound.

Korduba explained that Luke, who has been on hearing aids since he was five weeks old, doesn’t get much help from them.

“With a hearing aid, you have to force them to use the little hearing that they have,” she said. “Being profoundly deaf, he doesn’t get a whole lot of help from the hearing aid.”

Once it was determined that Luke would undergo the procedure and get the implants, Hrncir and Korduba applied to Hrncir’s insurance plan for seemingly sure-fire coverage.

But the insurance company didn’t agree and denied their claim, deeming the procedure “not medically necessary.”

“They said Luke was too young and that it would be considered elective surgery,” Korduba said. “Luke met every specific criteria a child could meet. But they denied us anyway.”

Once again, Korduba and her husband were nearing a dead end. The procedure would cost $127,000 per ear without insurance. So Korduba lobbied for help, contacted Luke’s surgeon, turned to friends and even spoke with U.S. Rep. Michael McCaul, who worked to get the ruling overturned.

Finally, the insurance company relented and agreed to pay for part of the procedure. Luke is scheduled to have the surgery for the implants on July 13, 12 days after his first birthday.

Three weeks after that, Luke will be fitted for the outer portion of the device, which, Korduba hopes, will help him begin to hear.

“I want him to function in a hearing world,” she said. “I want to hear him call my name. I cannot wait for that to happen.”

Following the procedure, Luke will undergo tri-weekly therapy sessions to get him used to hearing and begin speaking.

Now that her son is on his way to living a more normal life, Korduba looks back on their ordeal with concern, not for her, but for others who may be in the same situation. “I’m an educated person and I had difficulty managing the system,” she said. “Many people may not know where to go.”
Korduba wants procedures put in place to identify what the next step would be.

“The theory is there’s not much you can do. But that’s not true,” she said. “Research all of your options and don’t take no for an answer. Don’t be scared to ask your physician questions and get answers to your questions. Make your doctor find someone.”

*I love aggressive moms who fight for their kids*