Ethics and Deafness -Carried Away by Technology

 

Hmm. Your child is born deaf and you are hearing. You try to learn sign and you realize that it feels unnatural. Your friend starts telling you about this amazing deaf child who can speak, sing, play the guitar, etc. thanks to this amazing operation and a device called the cochlear implant. You find out that your child is not a candidate for the cochlear implant because of inner ear malformations. You hear about an incredible new operation called an Auditory Brainstem Implant. This will allow your child to hear and eventually speak, despite the malformations. And what do ya know...they perform the surgery right here in Italy. Then, you read about this child:

After an operation to restore his hearing, Jorden Flowers is ready to learn to listen


JORDEN FLOWERS was born without auditory nerves and ear canals. An auditory brainstem implant surgery - a procedure not approved by the FDA for children his age - has allowed him to hear and speak. But now he must learn to use what he has gained.

By ASHLEY BELAND, The Times-Union


Determination and motivation are two words 5-year-old Jorden Flowers can't say.

And he's shown his family, friends and teachers at Clarke Jacksonville that their meanings don't lie in the sounds you speak.

Jorden, son of Olympic gold medalist Vonetta Flowers and Johnny Flowers, was born without auditory nerves and ear canals. His twin brother, Jaden, was born healthy, despite the pair being born at 30 weeks.

"We didn't even know [Jorden] was alive after the doctors came in," Johnny Flowers said. "They started talking about the complications with premature births. They painted a really dark picture of his future."

But the 2-pound, 9-ounce Jorden pulled through.

That was the first sign of the determination that has become synonymous with the youngster's character. Many other signs would follow, as Jorden became what doctors say is the first American child to undergo an auditory brainstem implant that allows him to hear.

The family began researching Jorden's condition and treatments for his disability. Vonetta Flowers said they immediately started to learn sign language so they could teach Jorden to communicate.

"His first sign was 'milk,'" Vonetta said. "It was funny because he'd do the sign in the middle of the night like he expected you to be watching."

While many babies were watching Teletubbies or Sesame Street, Jorden was watching tapes designed to teach babies to sign.

After a couple of years of research and referrals from other doctors, the Flowerses learned of an auditory brainstem implant that enables people without auditory nerves to hear. There was one catch: The surgery isn't approved by the Food and Drug Administration for children under 12.

The couple was undeterred and contacted Vittorio Colletti, an Italian doctor specializing in auditory brainstem implant surgeries. Colletti was the only doctor performing the surgeries on children as young as Jorden.

The surgery was costly, but Colletti waived his fees and Allianz insurance company donated more than $60,000, Johnny Flowers said. In December 2005, the family was at a Verona, Italy, hospital for Jorden's surgery.

"We spent Christmas in the hospital that year," Vonetta Flowers said. "We were very grateful because usually Christmas is about presents, and we saw Jorden's surgery as the greatest present of all."

Jorden's brain had to heal before the implant could be turned on. He heard his first sounds on Jan. 23, 2006.

While the implant allowed him to hear, it didn't teach him how to hear. That's when Clarke Jacksonville stepped in.

After a trial summer program with the school, the family moved to Jacksonville from Birmingham, Ala.

Clarke Jacksonville is one of only 53 schools in the country that focus not on sign language or lip reading but on teaching the deaf to listen, Allen said.

Since Jorden began classes in the fall, his family and teachers said, they have seen a dramatic improvement in his auditory capabilities.

"Before coming here Jorden didn't really talk, but there's been such a change," Vonetta Flowers said. "It's been very emotional, and we're constantly reassured of our decision to come here."

Jorden also has increased his vocabulary and become more engaged in the classroom, his teacher, Lynn Stoner, said. Stoner has 10 years of experience at Clarke Jacksonville, but she still marvels at the motivation she sees in Jorden.

"I think his determination, his motivation, his willingness to learn is amazing," Stoner said. "He just never gives up."

Most of the couple's friends and family say the trait runs in the family. Vonetta Flowers was the first African-American to win a gold medal in the Winter Olympics.

She used that same determination she sees in her son while training for bobsledding. Vonetta Flowers has retired from the sport to spend time with her children and family.

Despite the difficult journey from Jorden's birth to his start at Clarke Jacksonville, his parents don't regret their choices.

"[Jorden's] first language was sign language, so he could always sign 'I love you,'" Vonetta Flowers said. "... But hearing him say 'I love you' - those are the sweetest words a parent can hear, especially since I never thought I would hear them."

What would you do?


A parent has the right to choose.

 

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!"
lol.

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."

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 http://www.pretiflaherty.com/mediacenter/news/items/2008_03_26_209.asp

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...*

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.
*And*
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.

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.

*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.


*WTF??*

Mother Fights System to Get Help For Deaf Son

Mother Fights System to Get Help For Deaf Son
By Brian Walzel
Editor
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*

Upside-down

This post is kind of about kid-stuff. My lunatic daughter of the golden curls has been scratching for the past four days. Scratching and whining, scratching and whining..."Mommy, massage my back" 5000 times a day, and I have been rubbing and rubbing and rubbing. Finally, she is healed. The weather here was cold and rainy for so long, until finally we had a full weekend of strong sun beach time, so that her skin reacted really badly. My kids all have my fair skin, poor them.

Why upside-down?

My insane Sofia Madyson eats her pizza upside-down. I cannot for the life of me understand why she takes a piece of pizza and turns it upside-down, so that the tomato and mozzarella are on the bottom with the dough on the top...just to aggravate me and destroy her clothes, or does the pizza taste better with the saucy stuff on the bottom? It's so illogical, yet adorable at the same time. I like it when my kids do abnormal stuff, it's the only time I'm really sure they're my kids. *smile*

Jordan has officially entered adolescence (Note: his best friend just proudly showed us five official hairs under his armpit, I almost passed out)because he now chats on MSN. Why do I see my life getting very physical as I will have to "take out" my son for computer time? Although, I think I'm having more fun than he is on MSN with all the little talking avatars. To give you an idea of how well he hears with his cochlear implant, his friend Agnese told us to hook up the webcam and telephone element of the computer so that he could talk and chat. He understands perfectly what they say through the computer speakers to the point that Agnese's brother was explaining how to download UNO from MSN. I sat back and smiled.

I went to meet with a school for a full-time job next year and they called me "solare." (sunny)I think they're going to create a position for me, we'll see. It was a productive meeting.

I was walking through the Corso and I ran into a family with a child who has a Cochlear Implant. They asked me where to get a copy of the book, I said right behind you. We were in front of a book store. The book was in the window. Giulio, the boy with a ci, saw himself on the cover...beautiful moment.

Next I ran into a mom I know who told me she had breast cancer.

Then, I saw one of my five year old students who ran up to me and gave me a hug.

Afterwards, I ran into Giulio and his family again, so I signed his RALLY CAPS book:
To Giulio and Fam,

I wrote this book for us, but I also wrote this book for your family. Giulio, you are a very special person and ...handsome. Kisses, Jodi

Giulio is a child who is not only deaf, but who has other disabilities. Hopefully, he will find a little of himself in the book.

NHS 2008 - My Speech

Here's my speech! I will say this - at a certain point, I started shaking, like a physiological reaction or something. I began fairly calmly and suddenly, I got the shakes. Luckily, I started the powerpoint presentation at that moment, so I managed to pull it back together, but it got a little sticky there for a minute. I don't know that I followed it word for word, but the jist was this:

INTRO:
Good Morning. My name is Jodi Cutler Del Dottore. I am an American Mom living in Tuscany. My 11 year old son Jordan was born profoundly deaf, wore hearing aids for eight years and three years ago was implanted in Pisa by Prof. Stefano Berrettini with Cochlear’s Nucleus 24. His first processor was an Esprit 3G, and he currently wears a Freedom. All of our expenses have been covered by the Italian National Healthcare Service.

The cochlear implant changed our lives. From the moment of activation, Jordan flew, grew and found his voice. Because he found his voice, I was able to raise mine regarding our experience. My father and I wrote the book RALLY CAPS, and incorporated a strong deaf character with a cochlear implant just like my son, because every child has the right to find himself in literature. RALLY CAPS has been endorsed by Cal Ripken Jr., Brooks Robinson, and Curtis Pride, the only Deaf Major League Baseball baseball player. It was published in the United States and has just recently been published in Italy. At the book presentation two weeks ago, I invited the Medical Professionals involved in helping our child, each and every one of them not only attended the presentation, but they spoke.

The following is the dedication in the Italian Version of Rally Caps to all of the medical professionals and teachers who have assisted us in raising Jordan’s voice:
Placing your child in the hands of other people and having to trust these people with your child is the most difficult thing for a mother. When life requires that you ask for the help and support of persons outside of the family, you suddenly find yourself in an extremely vulnerable position. Finding professionals willing to offer all of their efforts and competencies, who moreover demonstrate the ability to love your child in such a way as to contribute to his growth is…extremely rare.

*Slideshow*

I travelled ten hours, changed trains four times and sweated my way to a hole in the wall of a hotel room with a bathroom in the hall to provide you with this message: There is NO greater ally in making your job a success than the Mother of the Deaf Child you are assisting. I am here today, based on my experience here in Italy, to provide you with a Mother’s perspective.

PEDIATRICIANS:
Jordan was born in Baltimore and was extremely alert and obviously intelligent. There was no newborn hearing screening program at that time. Because Jordan was so intelligent, we questioned our pediatrician numerous times regarding his lack of language expression, he wasn’t babbling at all. Each and every time, my pediatrician called me neurotic… Motherly piece of advice number 1: LISTEN TO A MOTHER’S OPINION, THERE IS NO ONE WHO KNOWS HER CHILD BETTER.

As an American Mom thrilled to be living in Tuscany, I jumped off the airplane with ten month old Jordan slung over my shoulder ready to dive into some Chianti and pecorino cheese. One month after we settled into our new small town Grosseto lifestyle, we took Jordan for his first check up with our new paediatrician. Dr. Giovanni Lenzi performed a standard Boel test which involved distracting Jordan with one hand and ringing bells with the other- to which Jordan had no reaction. We were sent to Florence where they performed an ABR that indicated Jordan’s profound bilateral sensory-neural hearing loss. However, try to imagine the scene in that office...

AUDIOLOGISTS
When this audiologist came to speak at my book presentation a week ago, she commented on how different I was compared to that first day that I met her. I was a 25 year old American Mamma wearing cut-off jeans shorts, very broken in tennis shoes who didn’t speak a lick of Italian. What I didn’t tell her, because the most important thing in our relationship was the fact that she loved Jordan, was how angry she made me the day she gave me that news of my son’s deafness. She looked right through me…and spoke to my mother in law. And when I intervened by means of my husband and said, you need to talk to me, I AM THE MOTHER, she began calling me “dear.”

Motherly words of wisdom number 2: When you give a parent news of their child’s hearing loss, look them directly in the eye and never look at them with pity. If that mother is Hispanic or deaf, make arrangements for an interpreter to be present because the news you give that mother will change the rest of her life.

SPEECH AND LANGUAGE PATHOLOGISTS
Armed and dangerous with hearing aids, next stop Auditory-Verbal Therapy four times a week. Advice Point 4: This one’s for the Speech and language Pathologists, and Auditory-Verbal Therapists: Encourage that Mom who now assumes a new role as Mom/Teacher, focus on the positive progress made.
Imagine your typical playground scene, it is natural for a mother to teach her son right from wrong, how not to climb up the sliding board or not to push the child in front of him...it is not natural to have to shove language down your son’s throat "Oh, look, there's a toy train, can you say Toot Toot? Oh, look that little girl has a toy car, Brrrrrooom, brrrrooom!" This dual role of teacher/mother blew me away, I am a teacher, but I have Never had a student as stubborn as my son. My speech therapist explained that my son’s temper tantrums were due to his frustrations regarding his inadequacy in expressing himself, he threw a lot of temper tantrums, so he must have been extremely frustrated.

It was my son’s frustration and the fact that he was falling behind socially that led us to choose the cochlear implant.

COCHLEAR IMPLANT TEAM
After a couple of opinions and research we found Santa Chiara Hospital in Pisa where Dr. Francesca Forli answered every single one of my fifty questions calmly, objectively and sincerely. I had found my implant team. Prof. Stefano Berrettini performed the Implant Surgery leaving Jordan’s residual hearing intact. He provided me with his personal cell phone in case of emergency and called a couple of times to check on Jordan’s progress, note Jordan’s operation was the day before Christmas. I am not asking you to give up your personal lives for your patients, however it might be a sort of a human touch to delegate a phone call to a member of the implant team to find out how that child is doing…and how that mom is doing. A calm mother means a calm child.
Motherly request number 5: Go above and beyond the call of duty every now and then, it goes a long way in establishing a collaborative effort with the mother of that child, which will only make your work more successful.

The cochlear implant enabled my son to become independent. Our journey has not been easy, but it has been extremely rewarding.

SUPPORT NETWORK
After spending ten years without support, I found the Pediatric Cochlear Implant Circle a community of over one thousand parents at various stages of the cochlear implant journey. Some parents use ASL as a bridge or in conjunction with spoken English...other parents strictly use the Auditory-Verbal approach. We exchange information regarding the latest technology and offer psychological support having been there and done that. I then joined the blogging community, which has led to a productive dialogue with the Deaf Community. Hearing mothers of Deaf babies with CIs are making a difference in opening minds within the Deaf Community.
Mom’s Final Request: Provide that Mother with resources to help her through the lifelong journey with her deaf child.

I would like to share a little poem by Shel Silverstein entitled
Listen to the Mustn’ts

Listen to the Mustn’ts, child,
Listen to the DON’TS
Listen to the SHOULDN’TS
The IMPOSSIBLES, the WON’TS
Listen to the NEVER HAVES
Then listen close to me-
Anything can happen, child,
ANYTHING can be.

We are an example that Anything is possible. Empower that mother by validating her concerns, looking her directly in the eyes when you speak to her and providing her with resources that offer support and guidance... and you will save that child.

Forget about "Balls"...It's Definitely PMS

There is more drama going on here than at one of my sister's Dyke Tea hours at the Hippo in downtown Baltimore. I would like to make one thing clear so that I am not accused of "hiding" information. Cochlear Italia, as I have already said, was so enthusiastic about RALLY CAPS that they paid for the translation and purchased 416 copies of the book (we obviously waived our royalties for those books) to be distributed in hospitals throughout Italy. They requested that I include their contact information as well as other relevant material on the back cover of the Italian edition. I now consider RALLY CAPS a valuable resource for who may be interested in a Cochlear Implant here in Italy where information is extremely scarce in the South, as confirmed by my former speech therapist this evening over a nutella milkshake.

I welcome the opportunity to advocate. I wear Rachel's CI awareness designs, Eva's cochlear necklace and spread the word every chance I get about Cochlear's Freedom, because it has changed our lives. I have never been given an Euro by Cochlear Italia, but we obviously have some sort of relationship forming, that I hope grows into a real love story.

Why is my situation different than Rachel's?

Taylor wrote:
...The blogger(s) may benefit in other ways, such as receiving a free trip, receiving a discount on the company’s product/service, or obtaining a scholarship.
Why should a "scholarship" be grounds for excommunication?

Some things just don't make sense to me. Maybe because it's 12:32 am, and I'm tired as hell. You know, I told a friend of mine I was thinking of becoming a lesbian, but I've since changed my mind - I couldn't handle being on the rag With my partner. I think I had the "balls" thing all wrong, maybe it's just that time of the month on deafread.com.

Jordan's "Best Day Ever": RALLY CAPS ITALIAN PRESENTATION

 

I was really trying to be a good Mamma by vacuuming my house, but the vacuum cleaner literally just exploded...I am NOT meant to clean my house (which now smells like burnt vacuum cleaner).

 

Sofia after spending the morning outside screaming, I mean as if her hand got slammed in a car door, because every now and then she sees a spider the size of a quarter of a baby tooth just said the funniest thing: "Mommy, what is English?"
"Sofia, English is what Mommy speaks to you, it's a language. We speak Italian, English and Jordan is learning to speak French." I replied.
Sofia asked, "Like Japanese?"
Shocked at my intelligent 5 year old, I suddenly understood and said, "Right, like the Japanese you see on Naruto or Dragon Balls."
Sofia smiled and said, "Yes, Mommy, I speak English, Italian, Japanese and Fairy Tales."
"Yes, Sofia, that's correct."
*smile*

Okay.

 

Yesterday was the presentation of the Italian Version of RALLY CAPS. Twelve people spoke including the Adminstrative Representative of Cochlear Italy, our pediatrician, our child psychiatrist, our first audiologist, our speech therapist and another one of our speech therapists travelled 8 hours to be present as well, our current audiologist responsible for mapping the ci, the vice-mayor of Grosseto, a representative of the Medical Association who endorsed the book, the President of our Parent Association for Families of Deaf Children, Jordan's friend the famous Martina and Jordan.

There were over 120 people in the hall, every seat was filled and people were forced to stand:). I had invited the ENS, Ente Nazionale dei Sordomuti (Deaf individuals who communicate using LIS). After sending a letter to their President requesting their presence and an interpreter, the president contacted me accepting the invitation. There were about ten people present from the Association, and I was VERY excited about this.

I was a strung-out nervous wreck. There was media coverage, tv, newspaper, etc. I was so nervous when the TV guy interviewed me that I think I made him nervous. Okay, speaking before 130 in a language that is not your own, is kind of scary. I must have sounded half-decent because one of my student's moms just texted me: "I saw you on TV and in listening to you speak, one can truly understand exactly just what a mother is capable of doing for her child. Long live women!" THAT was a hot message.

However, this day was not about me, it was about Jordan. Every single person who spoke, spoke to Jordan. He began the presentation by playing "Old McDonald Had a Farm" on his guitar accompanied by Martina, who is just amazing. When she spoke about Jordan there wasn't a dry eye in the house.

 

After one hour and a half of speeches, Jordan read his letter. He read it clearly and sincerely. After the letter, he decided he wanted to speak to the public. Spontaneously. He said, "I would like to thank everyone for being here with me today. Now, I feel good. I play baseball, I play the guitar, I hang out with my friends, I do anything I want. Before, when I wore hearing aids, I wasn't so good. I was frustrated and life was difficult. Then, I got the cochlear implant and my life changed. Now, I feel good. Thank you again for coming."

I am a nervous mess and my son is a natural. Calm, cool and smooth. Jordan signed books for about an hour, after all he is a published 11 year old. After the book presentation, Luca, Jordan and I went out for pizza. Later that evening we went to an end of the school-year party and on our way home, he said, "Thanks, Mom, this was the Best Day Ever!" (Note: It was also his last day of school:))

PSPSPSPSPSPSPSPSPSPSPSPSPSPSPSPS...*SMILE*

 

Hmmm...They're Gonna Let Me Speak:)))))

LISTEN TO THE MUSTN'TS

Listen to the MUSTN'TS, child,
Listen to the DON'TS
Listen to the SHOULDN'TS
The IMPOSSIBLES, the WON'TS
Listen to the NEVER HAVES
Then listen close to me-
Anything can happen, child,
ANYTHING can be.
(Shel Silverstein, Where the Sidewalk Ends)

I have been invited to speak during the Official Welcome Ceremony of the NHS 2008 Conference in Cernobbio, Italy (June 19-21)...before 600 international medical professionals.

*smile*

La vertigine non è paura di cadere...ma voglia di volare. (Jovanotti "Mi Fido di Te")

When Listening to the Child Requires Choosing ASL

Posted by a mom on the Pediatric Cochlear Implant Circle:
My daughter is not a stellar oral child. She is 5 and lipreads a few phrases and
speaks with all her signs but it is mostly unintelligible. Our difference is
that our implant team refuses to do a CI unless we completely drop ASL...we
refuse. (I had never heard this before and was kind of surprised.)

My only insight is that all children are different. Some deaf kids are just not able to learn to speak and listen exclusively, no matter how much we want it.

When my daughter was a little older than 2 we had a highly respected TOD come to
our home and work with us for a few weeks. The second time she came, just as she
was leaving she said "Wow, she is all ASL isn't she! You have yourself a
signer....nothing you do can change that!" She had only had her hearing loss for
about 8 months and it was only 60 db and she was aided to 0!!

Turns out the TOD was right. We do speech and she has been improving, but she just doesn't care all that much. She wears her aids and gets great benefit from them, but not with speech. She sings and vocalizes constantly, she even has sound effects when she plays. We will continue our listening and speech therapy, but our emphasis has
shifted. We recognize that our daughter is fine without speech and that being
happy and having real language is the most important thing, and through ASL and the Deaf community, she has those things.

Our daughter is Deaf. She attends a school and church for the Deaf. Her friends
are all Deaf and we now function inside the Deaf community. My daughter's
identity and personality are intrinsically linked to her Deafness and there is
nothing I can do to change this. I know there are many on this list that do not
feel this way, but that is the path that my daughter has lead us on. We have had
to shift some of our goals and dreams....NOT give them up, just change what they
look like. But for us, this has been our journey.

There has been an interesting thread on the Pediatric Cochlear Implant Circle regarding progress made with a CI, and I wanted to share this mother's post. Hers and a couple of other parents reinforced the same fundamental concept with regard to choosing communication methods and parenting a deaf child: Listen to the Whole Child, because a child communicates in many ways on many levels.

For Hearing Aid or CI Users: Music Links for Your Ipod

This product may not be new to many, but it is the first time I've seen it, so I'm blogging on it for other latecomers like myself. Apparently, Music Links works well with hearing aids and Cochlear Implants and is an alternative to ugly headphones that don't really provide good sound quality. Since Music Links has been working its way through my support groups and the moms are raving about it, because happy iPod teens are happy Moms, I'm posting a couple of reviews.

But first...
Music Link benefits
Stereo sound
T-coil/Telecoil compatible - BTE, ITE and ITC aids
Replaces headphones and ear buds
Replaces conventional neck loop
Louder - Stronger signal than non-powered neck loops
Simple - No batteries to charge or replace
No feedback or distracting background noise
One-year manufacturer warranty

A gentleman named Robert who is a frequent poster to all groups, posted this about Music Links:
Hi folks,

I was given a set of the stereo Music Links long ago for evaluation ( surely
with the hope that I would write a positive report on the product)
I did better than that - I raved about them - and spread the word
accordingly!

Technically speaking, the Music Links (silhouettes) are far superior to any
neckloop for two primary reasons:
a: The proximity to the hearing instrument results in a much stronger
electromagnetic field for the telecoil/s.
b: They provide true stereo, as opposed to binaural mono - the case with all
neckloops. ( No wonder the boys love them! )

For older kids and folks using the phone, with the Music Links plugged into
the headphone jack of an amplified phone, the results are truly amazing!
Nothing beats binaural listening on the phone - say nothing of excluding (or
minimizing) ambient noise.

Music Links are compatible with any hearing instrument equipped with telecoils, For the Harmony,they're built-in, of course. For the Auria, the accessory T-Coil will be required..
The Music Links create no audio - just the magnetic field for the telecoil
in the processor.

Note on the Music Links used with telephones:
Some phones are equipped with a stereo output jack, which is what the Music
Links require.

Some phones, however, use a mono jack. And the makers are not clear at all
on the matter.
Bottom line, if there is no output on one side of the Music Links you likely
have a phone with a mono output jack.
Inexpensive adapters from Radio Shack will cure the problem.

This is a great product that works well, and I can't sat enough good about
it!

BTW, for any Brits of interest, the Music Links, which are a product of
England, are available there from Connevans Limited for Lb. 18.50

Disclaimer: I have no financial interest in any entity related to hearing
loss products.

Just a writer on the topic.

Bob

*Thanks Bob!*

One mom of two teenage iPod obsessed sons with bilateral cis purchased the white version and said that her kids haven't stopped raving about the sound quality.


FYI: If you haven't seen Val's Blog today: DEAF CHILD ELUDES JAIL TIME! GO IMMEDIATELY! THE VIDEO IS HILARIOUS! Okay, I'll give you a hint: Adorable Gage just may have called 911 for the second time...Uh-Oh!

Hey DEAF Boy! Bullies...Jordan, Rachel and Hearing Moms' Perspectives

"Get ready DEAF-BOY...forget about the curveballs; let's see if you can handle some heat!"..."By the way, don't ever call me DEAF-BOY again." These two sentences from RALLY CAPS, that my son can finally read, had a profound impact on Jordan. While playing a game of Go Fish with Sofia and Jordan, Sofia looked at Jordan and said, "Jordan, I asked if you had a monkey...What are you DEAF!" I swear Jordan almost hit her. He got very, very indignant and said, "Don't say that to me, Sofia."

*Shocked*

When Jordan said, "Hey Mamma, what are you DEAF?" to me for the first time, I thought, we have finally arrived- he is so aware of who he is and that his deafness is such a part of his identity, that it no longer represents a weakness to him. I guess I was wrong. There is a fine line. He can say it, but others can not offend him. I shared this experience with other mothers on the Pediatric Cochlear Implant Circle and received many interesting replies, that I would like to share...(obviously with permission)

Rachel emailed me her response off-group (at 3 am. her time...does the girl ever sleep??):

Hey Jodi!

I just saw your post on CICircle about Jordan getting upset over
being called, "deaf." As a person who is deaf and who hears with a CI
like Jordan, I would be offended if someone called me deaf in a
"teasing" scenario, and so, I can completely understand how Jordan
feels. While deafness is part of my life, it doesn't define who I
am. I'm just a person who happens to be deaf and who hears with CIs and
from reading your post, I think that's how Jordan wants to view
himself. Because Jordan grew up in the hearing world, hears and
speaks, I think it's hard for him to view himself as a deaf person as
a whole. As you know, I can't see myself as a deaf person as my
entire identity. To me, when someone says "you're deaf" in a
teasing scenario, it's like someone saying, "You're mentally
disabled" or "You're autistic" or "You're fat."

Also, I would be careful about saying "proud to be deaf" because for
some people, it's sensitive to say "proud to be deaf" because some
view it as "proud to have a medical issue" like "proud to have
diabetes" or "proud to be blind" and perhaps, Jordan may view it that
way too. Choosing how to define one person's deafness is a very
personal choice, and maybe you might want to ask Jordan how he
defines his deafness. You might want to ask him "Do you view
yourself as a hearing person or as a deaf person?" and ask why, as
that might help you understand why Jordan wants to define himself the
way he chooses to.

The way I view my deafness as part of my life is that I feel that my
deafness has made me a more unique and special person. So, I think
saying "Your deafness has made you a more unique and a special
person" instead of saying, "It's something you should be proud of" would
probably be something Jordan would understand better about being
deaf. Anyway, I apologize if I sound "preachy" but I just wanted to
give you my perspective as someone who grew up with CIs, and I
understand how Jordan feels.

Diane, a hearing mom of a remarkable son, wrote:

Kids are pretty astute and can tell when someone is using words descriptively or
insultingly. And I can't blame someone for not wanting to be called "deaf boy".
My son explained to me that when people referred to him as that, they were making
the deafness the most important part of him. He asked Why don't they call me
Soccer Boy? Smart Boy? Funny Boy? It was a way of singling him out as being
very different from everyone else, when one reason that he had so much speech
and AVT and used HA's and a CI was to be accepted like everyone else. It would
be like calling an African-American, "black boy". Yes, his skin might be very
dark, and yes he might be a boy, but why does that have to be the identifying
characteristic? Can't he be a Swimmer/Singer/Football player/Spelling Bee
Champion/Whatever Boy that happens to be black?

At least, that's how my son felt about it.

My son suffered his share of teasing and insults. I remember one day in the 4th
grade he came home and told me he had been called Stupid Deaf Boy. It was the
Annual 4th Grade VS 5th Grade Kickball Championship. My son had played soccer for
several years at that point and had quite a kick. He kicked a homerun with
bases loaded to help the 4th grade beat the 5th grade. You have to realize,
this was Big Stuff! The 5th graders were the Kings of the Campus and did not
like for one second that the little 4th graders had won. So a 5th grader was
angry at the end and called my son, Stupid Deaf Boy. He was angry and he seized
upon the most obvious thing he could think to try and insult him. By then, we
had gone through our share of ignorance and meanness, so my son was fairly
nonchalant about it. He told me that obviously the boy didn't know one thing
about him or he would have never called him Stupid (by this time my son had been
tested and identified as Gifted and Talented), and so what if the kid called him
Deaf? He was!

I think when he was younger we always talked about the fact that
he had ONE disability and MANY capabilities. We even compared him to specific
kids in school that struggled at things where my son excelled. We pointed out
that they weren't deaf, but that they couldn't do as well at certain things that
he could. We also pointed out constantly that EVERYONE has something to
overcome, that his was just more obvious to the observer. Lastly, we taught him
Consider the Source. Sometimes the biggest thing some kids have to overcome is
IGNORANCE. We talked about how some kids feel a need to put others down in
order to lift themselves up, and that really they deserved our pity.

With regard to the above incident, I'd like to add that my son's 4th grade
classmates heard the boy and were outraged. Before a teacher even had a chance
to do a thing, they surrounded the boy and forced him to apologize to my son. One
insulting kid, many supportive friends.

I'd also like to say that this issue definitely gets better as kids get older.
There is always going to be a jerk (c'mon, how many of us adults know someone
who is a jerk?! I know I do.), but the vast majority of kids will totally see
this as just a part of who their friend is, and not a big deal at all. Along
with our previous post on Prom fun, I'd like to mention (and I don't want to
seem like I'm bragging - just sharing, really!) that my son was recently elected
President of his high school's National Honor Society (by his peers) for his
Senior year, he was selected to be one of two boys from his high school to
participate in the American Legion Boys State program this summer (nominated by
teachers), and we received a phone message that seems to indicate that he is one
of 30 students from our state selected to participate in a selective summer
residential academic program hosted at a university for 4 weeks (application
reviewed by our state's Dept of Education). My point is that his deafness has
become a "non-issue". He's a "regular" kid who can expect to participate in
anything he wants, just like any other kid, and to be accepted by his peers and
adults alike. He's become so "normal"! (Again, absolutely no offense intended
to anyone by my use of that word.)

Hope this helps,

diane

And...Naomi checked in as well (go directly to her blog for more on Bullies-and bring the kleenex):

I'm not sure that it is the fact that it is his deafness that is being referred to but rather that the person using this kind of phrase is clearly insulting him and it is the fact that someone is insulting him that leads to the anger. In the same way that "fat kid" would make a larger child angry, it is the intent behind the words rather than the words themselves.

My son had his share of teasing in his old school, sadly those charged with
dealing with it did their best, but really had no clue. They spent their time
putting out the spot fires rather than trying to change the culture of bullying.
He stopped reporting it to them after awhile.

In my son's case the teasing/bullying came mostly from one child. This child was
small for his age, was of an ethnic background that traditionally do not deal
well with disability, and struggled academically. My son was tall, and a whizz at
school.

My son and I talked about how much of this boy's reaction was about jealousy,
that he was jealous of my son's ability to do so well at school in spite of his
hearing loss. We spent a lot of time talking about how kids that bully will find
something to pick on no matter what, red hair, big nose, glasses whatever! This
kid couldn't get to my son so he started in on my other son with "the freak's brother" oh yeah he was a charmer! We talked about how insecure this boy was and that he tried to make himself feel better by putting other people down.

It wasn't until a year or so later when my son had the maturity to really
discuss it from his perspective that he described home "as a safe haven". He
reported to me that knowing he came home to a place that was safe, supportive
and where he felt so much love, sustained him during the tough times at school.
He moved schools since then and has never been teased in his new school and
has so many mates he is never home!

I think the issue here is helping our kids understand why people behave in
that way. The thing is that whilst I could have cheerfully gone right off at
this kid, I saw the way his parents were, the way he was treated, the
expectations on him, he lived his own hell right there in his own house. His
behaviour was a reflection of that. I think we need to let our kids know that it
is ok to be angry about this stuff but in reality what does all that anger do?
It eats them up and for what? They can't change the behaviour of another person
but they can choose to change the way they respond to that behaviour.

It also comes from developing self-esteem and a good close friendship group.
My son has his friends and he values what they think. Anyone else, he doesn't care
what they think, they are not important to him, so he couldn't care less what
they think about him and doesn't waste a second of the day worrying about it.
*I spent eleven years without support in dealing with psychological and technical issues in raising my Deaf child; now that I have finally found this support, I hope that others who need it...recognize that need and seek it out, because it does exist. Why go through all of this, alone?*

Response to Mishka and Myself

One of the reasons I posted yesterday's blog was to reinforce to the Deaf community that hearing and deaf parents of children with cis are aware of the risks involved in implantation. We support each other not only by sharing our experiences, but by discussing controversial information, this is a fundamental part of the Cochlear Implant Community. As I said in the previous post, my purpose for posting was not to create insecurities or brand wars, it was merely to provide information. Fellow bloggers and concerned AB ci wearers left important comments on my blog that I would like to share, because their comments promote awareness, as well, especially regarding the integrity of Advanced Bionics.

Abbie said...
Just like Jennifer said, this is a five year old issue and there are NO new issues or concerns. Advanced Bionics is actively participating with the FDA to reach agreement on this issue.

Five years ago, Advanced Bionics issued the voluntary recall on their accord the minute that they noticed the rate with Vendor B component was prone to moisture issues was 1% lower then the Vendor A component. Not all of the Vendor B implants had this problem. Advanced Bionics issued a voluntary recall themselves and followed up with issuing letters to the implantees that received a Vendor B Implant and footed the bill for the re-implantation with a Vendor A implant.

The FDA is just playing catch up.
March 30, 2008 8:43 PM

Jennifer said...
Jodi, just thought I'd let you know that this fine is directed at something that happened four years ago, not something that's currently going on. AB voluntarily recalled all their defective implants at that particular time and it is just now being addressed. AB and the FDA are on good terms and this is all being worked out. I can send you more information on this if you'd like! :)
I do appreciate your willingness to share information such as this on your blog...but I feel that AB is a good, reliable, sound company and I'm very proud to be associated with it! :)

Rachel said...
Jennifer and Abbie are both right - This issue is not new and FDA is just playing catch up like all the other government related stuff. A similar analogy - I have a friend who got a speeding ticket a few years ago, and his insurance didn't increase his rates until a few years later.

Here are the news that was posted in 2004:

http://www.fda.gov/bbs/topics/news/2004/NEW01119.html
http://www.medicalnewstoday.com/articles/14002.php.html

AB could have made this situation worse by not notifying all of their clients about the vendor B issue. So, I would say good for AB being honest about their products by voluntarily recalling the products and willing to pay for the re-implantation before FDA had a chance to fine AB.

My issue was not at all with Advanced Bionics, I just want parents to have access to ALL information.

This was what I posted on the CI Circle in response to the news release:

I don't know what to think after reading all of this. First of all,
it really angers me that already parents have spoken up about
these failures, yet when new parents come to the list asking about
experiences and information, we all become delicate and diplomatic
so as not to have implant wars. I can understand the need for
diplomacy, but I at least hope that parents who have had such
experiences email these new parents off-group to give them a heads-
up at least to do more research. It's stressful enough implanting
for the first time, my heart goes out to all of these parents who
have to go through it again because of device failures. This is
really unsettling news, and I am so glad that the FDA has
investigated this. I hope they do fine, so it will serve as a
heads up to all other ci companies to create the best possible
products for OUR kids.

Discussing CI companies is a very delicate issue because for every implant failure, there is a parent who will defend their company until the end because that is how successful the cis are when they work without failure, but we do need to
realize there are failures and apparently more than I even imagined.
I don't know, when I was researching I wanted to know the good and
the bad, the uglier the better so I knew I could make an educated
decision...this is a tough issue for this group. The important thing
is that we support each other, provide relevant information in a
responsible way and try to avoid scaring other parents, who already
have to make such difficult decisions. I'm really sorry to hear
about this situation with Advanced Bionics and I hope they produce
an even stronger product as a result...Jodi

Paula left this comment:
If this issue is 4 or 5 years old, how come we are first hearing about it now? I'm usually very "up" on all the latest news, especially pertaining to cochlear implants and I was not aware of this particular AB recall.

I'm glad it is resolved at this point but I am concerned about the fact that when people are making decisions on implant manufacturers for themselves or their children they are not fully aware of current issues.

This was my point for posting...

PS. Happy Anniversary, Honey!
PSS. I'm outta here, don't know when I'll post again, until then - Be Good!

FDA Seeks to Fine Cochlear Implant Company

FDA Seeks $2.2 Mln Fine Against Advanced Bionics


WASHINGTON (Reuters) - The U.S. Food and Drug Administration said on Friday it wants to fine Advanced Bionics LLC, a maker of cochlear implant hearing aids, $2.2 million for alleged manufacturing violations that put patients at risk.

The FDA accused Advanced Bionics of failing to follow manufacturing standards to ensure the safety and quality of the hearing aids.

The company allegedly failed to sufficiently evaluate and select a new vendor to supply a critical component, and failed to properly test hearing aids containing the unapproved vendor's component, the FDA said in a statement.

"The hearing aids pose a public health risk due to excessive moisture, exposing patients to the risk of device failure, possible surgery, and the potential for additional hearing loss," the FDA said in a statement.

The FDA said it filed a complaint against Advanced Bionics and its co-chief executive officer, Jeffrey Greiner, last November and amended it on March 17. The company is based in Sylmar, California.

A company spokesman was not immediately available for comment.

On July 7, 2003, Advanced Bionics received FDA approval to market the HiRes90k Implantable Cochlear Stimulator, a hearing aid surgically implanted under the skin behind the ear, to treat profound hearing loss in adults and children.

The hearing aid is considered a Class III device by the FDA, the most stringent regulatory category for medical devices.

(Reporting by Julie Vorman; Editing by Brian Moss)

(Note: "hearing aid" is cochlear implant) This article was posted on the Pediatric Cochlear Implant Circle and I felt the need to blog about it as a parent of a child with a cochlear implant. You need to know that in general, parents do not speak about ci companies, because obviously everyone thinks theirs is the best and people would just get into brand wars. The Circle is strictly about providing support regarding pediatric issues, therapy, communication methods and your basic kid life experiences. However, here, promoting awareness is not only about glorifying the ci experience, it's about providing relevant information for any and all parents reading my blog. One of the members of the CI Circle wrote the following response to this article:

I am going to chime in here and just tell what I am feeling after hearing
this news. When I first read this on here I was relieved and angry at the
same time. I have had two AB failures and this last one has not been
reimplanted yet because of fighting with insurance and the doctors to
reimplant it. I now feel like because the FDA has finally done something I
might be able to finally get reimplanted after waiting for a year and a
half. I have had many problems with my AB implants since being implanted and
hope that others do not experience the same things. I know that there are
people out there who are very happy with their AB implants and I hope that
you never have to deal with the setbacks that come from poor manufacturing
that results in failures. Hopefully as a result of this I will be able to
get reimplanted with a device that is not AB (which is what we have been
fighting for for the last year and a half).

When I contacted this person requesting permission to blog her response, she sent me this email:

Hi Jodi,
It has been a long and frustrating journey and I am hopeful to get it resolved soon. I am lucky to have had the opportunity to try one of the new hearing aids made my Starkey in my unimplanted ear which is giving me more benefit then any hearing aid ever has. However, it is still not enough to compare with the hearing that I was able to get with a functioning cochlear implant.
I would be more then happy to allow you to blog about my experiences. I also feel like you do. The more people I can help through my experiences the better. Yes, for me it has been such a struggle but I am a young adult who is able to lip read and communicate, it hurts me so much to hear and know that this is happening to children who can often not explain how it feels or what it sounds like.

Hearing parents of deaf children who are currently researching brands for implantation need to be informed. Thankfully, the FDA exists and is apparently doing their job to ensure that the newest generation of cochlear implants are effective and safer for our kids.

Re: Ci Controversial, Why?

Delicately dipping my big toe in the freezing water...
*Brrrrrrr!*

60 posts later, I have finally taken the time to research the word "Audism."
To do so, I went straight to the About.com queen, Jamie Berke

I'm Better Than You
In the deaf culture, calling someone an audist is akin to calling someone a racist.
What is audism? A simple definition would be that it is a negative or oppressive attitude towards deaf people by either deaf or hearing people and organizations, and a failure to accomodate them. People who have audist attitudes are considered to be audists. For example, the refusal or failure to use sign language in the presence of a sign language-dependent person is considered audism.

According to an article in Capital D Magazine (vol. 1, issue 1) (now apparently defunct), Tom Humphries invented the word "audism" in 1975 to mean an attitude that people who hear and speak, or have good English are superior. This applies whether the person who hears and speaks is deaf or hearing.

*Hmmm*

The writer of this post says,
Think about it. What are advocating of CIs blogs about? Success stories. Oh, I can hear the lake! Oh, I can hear the crickets! Oh, I can hear music! Oh, I can hear the sounds of human voice! And the list goes on. Doesn’t it seem audistic to boast of hearing success as if being deaf is not so cool?

What if deaf individuals who have worked so hard in avt and in life in general are just proud to live their deaf experience with a ci and the "superiority aspect" of being fluent in the English Language has nothing to do with it? What if they are advocating "Choice" in the deaf experience by discussing the benefits of ci? If Rachel is here on deafread.com to interact in productive dialogue with individuals interested in her experience, is she an audist because she is willing to openly answer questions about her journey? Or is she an "audist" because her views conflict with those of readers?

She responds to criticism, reads it, listens and reflects...she is not an audist.

*Audism is in the eye of the beholder*

Jamie Berke has been so generously relating her Cochlear Implant Experience, this is what she shared earlier today:
On the way home, I found I could hear Bob's voice. At home, I even heard him laugh. At the grocery store, we were asking the pharmacist questions, and suddenly I realized I could hear the pharmacist's voice. On the way out of the store, talking to Bob, I heard something else that it took me a moment to realize what it was...my own voice.

I now suppose that Jamie Berke will be considered an "audist" for wanting a cochlear implant and being amazed that it actually works.

But, no...because your post interestingly incorporates two aspects in the equation, "...the linguistic perspective. Why? Because the AVT therapy’s sole purpose is to train CI implantees to speak what? English!" You continue by saying, "But when we Deaf are faced with this attitude that ASL is ok for somewhat successful deaf children but spoken English is a must for a successful deaf child to grow into the world, it rubs the Deaf people WRONG way!"

suc·cess (sk-ss)
n.
1. The achievement of something desired, planned, or attempted: attributed their success in business to hard work.
2.
a. The gaining of fame or prosperity: an artist spoiled by success.
b. The extent of such gain.
3. One that is successful: The plan was a success.
4. Obsolete A result or an outcome.
*Success is not in the eye of the beholder, it is in the eye of the person who has desired, planned or attempted*

Do you measure your level of success based on how others see you or as how you see yourself? Really consider the answer to that question and you will begin to see Rachel as a twenty year old woman who sees herself as successful. This is why she is not an audist, just a person who has achieved something desired after working so hard for so many years, and that she wants to share this experience with others. Audism carries a component of hatred, just like racism...do you really feel that Rachel hates you?

Or do you feel judged?

You wrote:
"Now, if ASL was not dismissed by CI advocates as unnecessary, the story COULD be different."

Rachel does not dismiss ASL in general, it just does not have a part in what has been her experience until now.

You conclude with this:
It is up to you, CI advocates, to drop the dismissal attitude of ASL as an important part of d/Deaf people, not just because it is a culture thing but also because it facilitates their connection to the language expression!

No one has dismissed ASL as an important part of Deaf people and Rachel is a success story for me as the hearing mom of a deaf child with a cochlear implant...I will NOT allow her to be dismissed.

As seen on the Pediatric Cochlear Implant Circle, Learn2Hear and Listen-Up yahoo support groups, many parents of children who wear cochlear implants are incorporating the use of sign language with their AVTherapy. There is no written law regarding communication methods and the cochlear implant. Actually, ALL communication methods are accepted and welcomed on these groups.

Why are so many people having so much trouble accepting the Cochlear Implant as a tool in approaches to Deafness?

(Paotie...I know, this was not one of my sexy, fun-loving posts just not feelin' it today...*wink*)
PS. Mike McConnel's hitting the road and I for one am really sad about it...check out his farewell blog here.