Ethics and Deafness: Dianrez Weighs In

 

Dianrez asked some thought-provoking questions:

Take the child who was born deaf and admire how physically perfect he is. He runs, skips, analyzes, critically examines, laughs and cries. What, you say he is not perfect? Because he can't hear?

Me: Why shouldn't he ALSO be able to hear?

Take your own motives. You want to give him what you already have and hold precious...the ability to hear and communicate. What, you think he won't be able to do so otherwise?

Me: Without his amplification he would not have been able to communicate with his peers...or hear.

Isn't a different method of "hearing" and communicating just as good? Why or why not? Be aware that your own prejudices are coloring your thoughts.

Me: There is no different literal meaning of "hearing" - you hear or you do not. Figuratively speaking, I could "go there," but I'm focusing on the literal. Additional methods of communicating are always welcome. I am not prejudice in regard to deafness, I treat my child as an individual and address his personality and needs.

Take the child's own motives. Will he appreciate the artificial hearing, an imperfect and incomplete method of communication, being surgically implanted with an unknown level of risk and unknown future of complications? Or will he appreciate being cherished as he is, healthy and Deaf, and given all the educational advantages that you would give him anyway using other methods?

Me: I cannot comment on a new mother's situation without knowing about her family or the specific child. Given where the technology is at this point in regard to the ABI, I would have to really be convinced to have that operation performed on my child. In regard to our experience with Jordan, he has always "heard artificially," has only complained when the batteries die and is utterly cherished for the person he is...healthy, Deaf, American, Italian, big brother, beach-volleyball player, stubborn adolescent middle school student.

Will he appreciate a possibly marginal relationship with the hearing world, always a little bit off in timing and comprehension in many situations, and/or will he also enjoy the rich and emotionally satisfying interaction with other Deaf people?

Me: He doesn't "appreciate" his relationship with the hearing world, because it is all he has ever known. We take many things for granted. He enjoys rich and satisfying interactions with other deaf individuals all of whom are amplified and speak. One day, I am sure he will learn sign language and explore the Deaf community, that is not our reality at the current time.

Will he end up a poster child for surgery, forever justifying and demonstrating its benefits; will he become a fully featured hearing person with no thought to the upkeep, maintenance and surgical replacements he will have to go through? Will he have time and energy left over to become a whole person in himself?

Me: He is already a "poster child" of his own free will, he doesn't need me to express his thoughts...he has a voice of his own. And people do not need me to translate his words any longer. We'll deal with the surgical replacements when the time comes, no one said this was an easy process. Is anyone ever really a whole person...I'm still searching for me - I think that's what makes life a continual growth process.

In giving him a gift with many qualifications, are you actually trying to impose an idealized version of the child you wanted, or a miniature version of yourself? Is it so hard to accept him for the way he was born, an intelligent Deaf child with huge unexplored potential?

Me: *smile* God forbid that I create a mini-me. If you limit his ability to hear and receive the greatest number of messages possible (many of which are received auditorily), you limit unexplored potential.

These questions may seem harsh, but consider that the teenager you will have may ask them. Certainly most Deaf people think these, especially after they are given aids or surgery by the people in their families.

Some parents will just dismiss this and merrily go on, confident that their research and calculations of the pitfalls and risks are correct...after all, what do deaf people know about the hearing world?

Me: Rhetorical question?

Indeed, what do you know about the deaf child himself? What do you know of his world after he grows up?

Me: I only know my deaf child and he's teaching me more and more on a day to day basis. I will always be a part of his world - I'm a meddling mamma.

Personally, I have found myself moderating my opinions on surgical treatment of deaf children with the increasingly vocal parent and implantee community coming to the forefront in recent months.

Me: This gives me great pleasure! *smile*

Then an article comes up that talks about brain surgery and I wonder again about the extent to which people will go to in order to achieve their ideal child.

Me: I agree 100% (It took me the whole comment to get here, but I agree)
However...a parent has the right to choose.

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.

 

Rachel and the Italian Asshole

I'm on Luca's archaic work computer because my internet has been down for six days. FRUSTRATED! I have so much to say and five minutes until some pop-up on his computer erases what I've written. Typing my ass off, right now.
I miss Rachel.
The Italian guy was a first class Asshole. He called Friday night to try to get together, but we were in Siena, Pienza and Montalcino drinking Brunello and eating pecorino cheese with honey. Then, he called Saturday morning (motivated, wasn't he?)and asked to meet us at the beach. Me, being the naive American that I am trusted that I could leave Rachel alone in the water with a guy and his friend in broad daylight. I underestimated the asshole-ability of an Italian guy. If I ever run into him again, I'll pop him in the nose. He tried to kiss her. Imagine that. Rachel blew him off and broke his heart.

REWIND

I will say this. When we met the guy and his friends at the outdoor pub, Rachel had her hair down, so that her processors were not visible. Not one of the group suspected that she might be deaf. I kind of watched the scene in wonder and curiosity.
On Saturday at the beach, Rachel had her hair in ponytail. When the guys arrived and suggested they go for a swim (assholes), Rachel told me that I needed to explain to them that she was deaf and that they would need to speak to her so that she could read their lips. *smile*
My reply: Rachel, I'll tell them, but the point is kind of irrelevant considering you won't be able to understand each other anyway.
Asshole took the lipreading thing a little too seriously.
Anyway, as I have been saying throughout my blog, living in a foreign country and not understanding or being able to communicate in its language is very similar to being deaf.
The guy apparently decided that body language was the correct approach given the situation.
Rachel shot him down.
She is a princess.

Rachel,
Thank you for your post and the beautiful things you had to say about my family. I miss you already, my car seems empty without your calming presence amidst my freaking lunatic children. *smile* I learned a lot from you, appreciated your calm and deep way of viewing the world and life in Tuscany, and Loved watching Sound and Fury with you, somehow that just seemed right.
Love,
(Young) Aunt Jodi and Fam.

And this...is ART.


Next guest...my dad's comin' to town (God help me!)

Josh Swiller - SUPERHERO? Hell Yeah! MUST READ

*You asked for it...*
Read the following email correspondence: Zambia - USA - (Italy, Australia, UK) - USA - Ireland - Kenya - Zambia...

*The internet is a powerful tool for bringing aid worldwide, especially when the Deaf and Hearing collaborate*

Letter #1...A Hearing couple in Zambia working with Deaf children requests information as to how to create a Hands and Voices Chapter:
Hi,
Thank you for your letter asking for more information about my family
and my desire to start a chapter in Zambia.
Let me give you a brief account of how i came into contact with the deaf. As a family we are Jehovah's Witnesses. One day in 2003 when my wife Jenny was preaching from house to house, she encountered a deaf person who wanted to know more about the bible. My wife started conducting a home bible study which proved to be difficult because that person could not read and my wife did not know sign language. My wife
approached a teacher at a nearby school who teaches deaf people to
help her with the basic sign language but he refused.

My wife was further introduced to more deaf people by the one she first met.More
deaf people started coming to our home as a result my wife started learning some bits of sign language from the deaf themselves. Then it turned out to be routen, every so often the deaf would come looking for my wife. It proved to be difficult when she was not at home because the rest of the family did not know anything about sign language, so i felt compelled to join my wife! in preaching to the deaf. We were told about a witness who lived in another district(Ndola) who knew sign language. We approached him and arranged a class at weekends with my family. We later invited other interested people to join the class. As a family we were paying all the expenses.

Later on we went to a local school and got permmission from the Headteacher to show a video "what does god require of us" in sign language.It was at that point i came to realise that the deaf children were not getting enough in terms of education. they failed to understand the signs in the tape, could not even spell their names and could not read the wall charts.I and my wife went around to meet the parents/guardians of the 13 deaf children to seek permission from them so that when their children knocks off from school the could come to my home for extra lessons in arithmetic, reading and sign language. this really improved their perfomance.

When their teacher went on leave,the Headteacher allowed us to run the class. Since none of us was a qualified teacher i had to look for two secondary school leavers, Voster and Mercy(both deaf)who started teaching the deaf children. We even invited Deaf adults who have never been to school to join the class. But when the
teacher came back from leave he created some confusions and frusrated us .We had no option but to restart our program from home in the chicken run.We would give them food before releasing them to go to their homes.

Three qualified to go to secondary school but the parents failed to meet the expenses.My daughter is the Secretary of Zambia Nation Association for the Handcapped in the province. She was one time hired by the local university to teach sign language to interested teachers as well as medical personnel. Except for my son ,my three daughters and us sign for the deaf at christian meetings.

So when icame across your website i was impressed, touched and there and then wanted to be part of it. I have read the State Chapter. The major problem here in zambia is with the parents of deaf children.Generally here in Africa when you send your child to school you expect him in return to come and look after you. So when some one
knows that the child is deaf they do not care sending them to school thinking that it is a waste of resources.The parents/family do not want to learn sign language. Now when they have a problem with the child they call on us to mediate. The general public also is a problem, they think that the deaf are not normal.The education system is bad, providing few schools for the deaf. Most of the deaf live in rural
areas and dont go to school because of the distances involved. Some are orphans and come from poor families. I am sure your organisation can do something about the deaf in Zambia or Africa as a whole.

As a family we are prepared to work with you to see how we can help the deaf in Africa. But i must confess that the sign language that we learnt is inferior to the one we see in video tapes, so we need help in this regard.
Hoping to hear from you soon.
Isaac and family

*Letter #2: Leeane sends the following email to all founding members of the International Coalition of Parents of Children who are Deaf or Hard of Hearing*
AT H&V, we get requests routinely for support, resources and information from folks all over the world. This one from Isaac is probably the most detailed to date, and my heart wrenches for a lack of ability to respond at the level where it could really help him. Surely this is just one more reason why we need the ICOP, so
there is some sort of unified vision by those of us who may be able to lend support at least thru some sort of combined effort and pooling of knowledge. What can any of us do for the folks in Zambia?

*I had just finished reading THE UNHEARD by Josh Swiller and had corresponded with him a couple of times, so I decided to "make him aware" of this letter (your basic "throw up a prayer shot" - I mean how could little old American Mamma in Tuscany help a couple in Zambia?)*
Letter #3 Superhero Swiller responds by copying me a letter he writes to his Peace Corps contact in Zambia:

Hi Cindy (and Jodi)

Long time since we've spoken last. I hope all is going amazingly well down in Zambia.

Cindy, I recall that after Peace Corps Kenya program was suspended, there was talk of moving part of the signing deaf program to Zambia.
Is that still happening? Here's why I'm wondering: attached is a letter from a remarkable hearing man in Ndola who'd like to learn more sign so that he can teach the deaf, children and adults. The interest is there, the framework is there, all they need is some instruction.
I seem to remember that Peace Corps training center is now in Ndola as well (back when I served, it was in Kabwe). If it is, and if the deaf program is operating, this seems like a perfect fit.

If not, do you know who else I could contact?
Thank you!

Be well,


Josh


*At this point (sweating) I seriously consider hopping a plane and taking a certain course at Gallaudet*

Letter #4 Cindy replies:

Hi Josh,

Nice to hear from you!

We now have 4 deaf ed Volunteers in Zambia. They transferred to Zambia during the temporary suspension of the program in Kenya, to help us pilot a special project. (BTW, Kenya is now back up and running.)Our training site has been moved to Chongwe district, around 45 minutes outside of Lusaka.

The deaf ed Volunteers may have some ideas for your question, since they are now working with Zambian counterpart NGOs that may know about opportunities for him to learn sign. I'll pass your email on to them.

So any update on a possible trip to Zambia??

Cindy

*FREAKING UNBELIEVABLE*

It gets better. Leeanne in the meantime, forwards me an email from an RIT student named Christie who is interested in moving to Italy to help create a Hands and Voices Chapter here.

*Guess where Christie was writing from?...Dublin*
*Smile*

A bit discombobulated (and-not or *smile*) from lashing rain and a thirty minute walk, I meet Christie in front of the Hard Rock Cafe in Dublin, and we go to have a coffee to discuss her many brilliant ideas. While we are speaking, I tell her about this email correspondence, and she tells me...
She has a friend working in Kenya for the Peace Corps.

Unbelievable.

Drolz...Beautiful Post Re: Mainstreaming Vs. Deaf School (Baseball Version)

Hi Drolzy. (http://www.deaf-culture-online.com/baseball.html - internet cafe computer issues) *smile* We haven't spoken in a while, but I always read you when I see your posts because they enrich me. Of course you know that I am a passionate baseball fan, so this one in particular interested me.

You are such a sensitive dad, that was obvious in the language you use to talk to your child and the fact that you saw his distress in the photo. Just as an aside, I remember about two years after I found out Jordan was Deaf, and started to breathe again since we had established our speech therapy routine, I took a look back at his photos from his first ten months of life in the States. Five of my closest friends all had babies during a span of two months, so we did everything together...baby groups, Halloween, New Year's Eve, etc. In every single one of those photos, despite the young age, all of the babies in the photos were looking at the camera except for Jordan - that's how I knew he was born deaf, after all we did only get the official diagnosis at twelve months.

Photos don't lie.

And neither do Deaf children.

We sent Jordan to baseball camp, too, a year ago. Our experience was a little different because Jordan only spoke Italian and this was an American baseball camp where all of the children spoke English, we knew there would be communication issues. Luca or I stayed with Jordan and transitioned him into the camp until he felt comfortable enough to stay a couple of hours alone. By the end, he was playing baseball with his peers, high fiving, sliding and getting physical with the boys...he had fun...but...

He had the sad look every now and then, too.

In some photos he was rip-roaring happy

In others he looked a little lost

Maybe it was because we introduced Jordan as being from Italy and only speaking Italian, but the ironic part of it all was that his teammates did not realize he was deaf (despite the fact that he wore his ci all the time - that's kids for ya). They just thought he was Italian and couldn't understand or speak the language very well. I know this because the last day of camp, his ci batteries went dead. As I was changing them, his teammates tried talking to him, and I explained to them that Jordan couldn't hear them until I finished changing the ci batteries. Reply: "You mean, he's Death?"

By the end of the experience Jordan had learned some new vocabulary, and so had the American kids. He also learned some important social skills and came back to Italy proud of his American baseball camp experience, where he found his whole Italian team waiting for him.

Safe at home...
In Italy.

Giovanni and the Ladies: Dublin

Here I am at an Internet Cafe writing next to two gentleman who are um...shady, and an Irish lassie outside on the street just flipped off someone who cut her off and told him off using very unladylike terminology.

LOVE DUBLIN!

Okay, I don't know where to begin, but if I don't write it down now, I'll forget all of it, so for those of you- and you know who you are- who told me to take fifteen days off from blogging...be satisfied that I lasted this long. *smile*

I sat between two of my six students Giovanni and Susanna on the planeride over to Dublin. It was Susanna's first flight ever (nice of her mom to allow her to share that special moment with me, right?)and at one point she began seriously shaking so I held her hand and tried to calm her down (she was so panicking that I almost had a panic attack there with her). Giovanni, tdc that he was, began talking about plane crashes. I hit him. He shut up.

Well, we made it to Dublin in one piece and the cute little taxi driver was there waiting for us, loaded our bags and we were on our way. As he zipped us around Dublin, he gave me an education, taught me some Gaelic (Irish) "Ceol" somethin' "Crack" which means Music and Fun, but in American English sounds like "Crack is cool" and asked me if I was free later that evening. I said no...thank you. He dropped us at Trinity Hall and went upon his leprechaun way.

1. After twenty hours of Dublin weather, I gave up, threw the straightening iron out the window and threw my hair in a ponytail. Dublin = Permanent Bad Hairday.

2. Giovanni is hunting for girls, and my girls are hunting for boys...they are not concentrating on their studies. Obviously, I am assisting them in their endeavors.

3. I took my group to their first Irish Pub, which was empty, sat them down and made them order Cokes as I ordered my first pint of Guinness. Then, I went to the bathroom. When I came back, my Guiness was gone. lol.
4. Thursday night I went out with the Group Leaders to the Center of Dublin, had my first Fat Frog, danced and was in bed by 4 am...I'm still recuperating.

5. I played Giovanni in ping pong and told him if he lost I would get to give him a makeover with very colorful eyeliner and lipstick. Obviously, I crushed him, (my cousins and I used to play ping pong every single family holiday) but I let him go about the makeover...for now.

6. Dormitory food is universally horrendous. We order pizza at midnight...between that, the Guinness, and the rain, I'll be returning a whale.

7. Visited the Hugh Lane Museum and got emotional looking at some of the paintings.

8. Visited the National Museum yesterday and saw this:(Jung) (Bello)
9. Barry, one of the University guides told me he went streaking across the golf course last night at 5 am...(Damn good thing I took the night off last night!)
10. Tried to access my blog from a computer at a pub a couple of nights ago and the computer denied me access...apparently, my blog is not for children.


*WTF?*

As an interesting aside, Leeanne from Hands and Voices sent me an email a month ago about a hard of hearing college student living in Dublin who was interested in moving to Italy to start up a Hands and Voices Chapter. Does anyone else find it strange that I just happened to be going to Dublin a month later? Well, we met yesterday at a cafe in Temple Bar and spoke for a couple of hours. She is an amazing person, who goes to RIT and is ready to take on the world. My kind of girl. Ironically, she has a deaf friend who is working for the Peace Corp in Africa...Zambia, I believe. *smile*

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."

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?"
"And?"
"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.

Note:
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.

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:
Welcome
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 situation...no 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.

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

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.

EXCEPT...

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.

Best,
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.

PS. HAPPY FOURTH OF JULY TO ALLLLLLLLLLLLLL...AND HAPPY BIRTHDAY NIKI!
CHECK OUT THIS VIDEO THAT A "WANDERFUL" FRIEND SENT: IT'S SOOOOOOO AMERICAN!

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.

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*

The Problem Child

Friday night I went to dinner with my friend Gabriella, who is a former "student" and teaches pre-school. For the record, when women go to dinner we don't just talk about sex and clothes, we get deep. After I told her my life saga, she nonchalantly told me that she was having a bit of a problem with the other teachers in her school, because of how she treats this one special child.

This little boy is now six years old and will attend Elementary School next year. Gabriella began teaching him three years ago...he was the type of child who refused to sit at the table during lunchtime, threw chairs across the room in anger, bit other kids, used his hands and never, never let himself be hugged or cuddled.

THIS is the type of child that changes the dynamic of a classroom...a teacher's worst nightmare, or if the teacher is sensitive and intelligent, her greatest gift. This type of child is "needy." This "neediness" requires that the teacher "give" a little more...a lot more. When a teacher recognizes this child's "cry for help" and answers it, she has the power to save a life.

What child doesn't need to be loved, hugged and told that he/she can conquer the world? Gabriella told me that this little boy used to say, "I can't do this!" "I am not good at that!" "I don't care!" As teachers, we never know what truly goes on behind the doors of these kids' homes, but when a three year old says, "I'm no good," he heard that from someone else. It is our job as teachers and PARENTS to motivate our kids and let them know that ANYTHING IS POSSIBLE.

A problem child in the classroom can be very frustrating for the teacher, because almost automatically, the teacher "teaches to that child" and not the rest of the class. Oftentimes, the "more intelligent" children are held back to maintain a solid equilibrium based on the problem child's mood of the day. Parents of "intelligent children" do not appreciate this decline in academic advancement.

What does the teacher do at this point? Does she abandon the problem child, let him throw chairs across the room, have him spend the day in the principal's office, etc? Or, does she fight the system and involve the rest of the children in something more important than academic growth...psycho-social growth?

I've always opted for number two. When a class of children sees that a teacher loves a child and that teacher renders that class participants in understanding the needs of another child, those children develop a level of sensitivity that goes way beyond anything that academics could possibly teach. Children have a remarkable capacity for sensitivity despite their natural state of being ego-centric even at such a young age.

JORDAN WAS A PROBLEM CHILD.
I felt guilty every time I left him at that Pre-School door, knowing that his mood of the day would directly affect the equilibrium of the classroom, the teachers and...the other children.
His classroom teachers were unable to control him and decided to concentrate on the rest of the class...
Luckily, and we have ALWAYS been so fortunate, he had a support teacher in the classroom who LOVED him, hugged him, took him out of the class for mental breaks and protected him. The classroom teachers hated her. I loved her. Jordan loved her. She helped save my son.

BTW, three years later, Gabriella has to let go and send her "Problem Child" to Elementary School. She told me that the other day they had a little fight because he wouldn't sit down and do his work. When he saw that she was angry, he walked up to her and said, "Gabriella, you are beautiful."
Gabriella asked, "How beautiful?"
He said, "Really beautiful."
She insisted, "How beautiful?"
He said, "More beautiful than the two dogs that are kissing on your shirt."
Then...he hugged her.

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.

Empower the Mothers

This has been a period of ups and downs. Because I am an optimistic person by nature, I have pulled myself out of the downs in such a way that I am stronger and more able to face the next "down" when it comes. I have no time to breathe, but I am not suffocating. I had to let the blog go the past couple of days, because I needed to prepare my speech for the NHS 2008 Conference that begins on Thursday.

I am going alone. Somehow, I know that THAT is the way it is supposed to be. I booked my train ticket today - I'll be travelling eight hours, changing trains four times (throw in a bus ride, too) and staying in a hole of a hotel room with a twin bed and a bathroom in the hall. I have always been the adventurous type. *grin* (not *smile* - *grin* there's a subtle difference there)

Why bother?

*600 medical professionals*

If twenty of those 600 listen to my message of EMPOWERING the MOTHERS, and those twenty treat 100 patients each, making that extra effort to listen to, trust and provide important resources to those mothers, then I will have helped 2000 children in a small way. I'm really hoping to reach at least twenty of those professionals.

I'm going for pants, but I'm thinking sandals with RED nailpolish. One mother on the Circle told me not to wear a shirt with prints...I have never worn a print in my life - I'm all about SOLID.

While writing my speech, I was sitting in a cafe alone, listening to "Winning Women" (Rhianna)on my iPod. I felt damned motivated.

Forty minutes ago, I finally figured out how to create a slideshow using Power Point...alone.

Tonight, after the kidlings go to bed, I will stand in front of the mirror and spend some quality time with Me, Myself and I practicing this speech, because I need to really, really make it a good one.

Despite my ups and downs, I have NEVER felt STRONGER than I do right now. After all of the shit I have been through, and what I am going through now, I am learning to EMPOWER myself.

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*

 

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.