Jr. High Student Participates in Bimodal Study: CI and HA

Not every teenage girl entering her Jr. year has the Jr. Prom or Jr. Ring Ceremony on her mind, some are more worried about helping others who may find themselves in her very same situation as a Deaf individual. To give you an idea of Nichole's thought process in choosing to go bilateral, read her letter to her audiologist:

Hi Marilyn,
My dad asked me if I was willing to give up my remaining hearing in my left ear for a second implant. Definitely!! I would give my residual hearing in an instant because as my little investigations have shown, a CI is about 100% better than a hearing aid. The only hearing (without the hearing aid in) I would be giving up is:
-hearing the water hit my ear in the shower
-myself humming with my hands over my ears
-an MP3 player on Volume 30 (maximum volume setting-I can barely hear it)
So I wouldn't be losing anything really except the title of having a hearing loss.
Thank you for the tip on how to turn off the FM microphone but keep the CI one on. It has made school life a lot more tolerable than before : D
Thanks,
Nichole

This is a video of Nichole's Mapping

And...this is Dean's blog announcing Nichole's participation in the study:

Nichole has been participating in two different research programs. The first is at MIT. They are testing Nichole's hearing ability with her Cochlear Implant. There are a number of different tests they are running. Some deal with her ability to identify vowels, some consonants, others the pitch of musical notes. The main researcher, Ray Goldworthy, who has a single CI himself, is eventually hoping to modify maps to allow CI users to hear better in vaious situations. he even spent some time in Australia at Cochelar learning more about their processors.

The second study is taking place at Northeastern University. Dr. Ying-Yee Kong is the principal investigator on this study, which is looking at people with one CI and one Hearing Aid (HA). They are running similar tests as those done at MIT, but with some variations, including testing in noise. They are interested in testing Nichole, because they want to see how she performs using one CI and one HA, then retest her after her second CI is fully "integrated". The results of this testing will possibly help other single CI users decide if going bilateral is better or if keeping one HA and one CI is best.

Nichole has enjoyed participating in both studies. She likes the idea that all this testing (and it is quite tiring - I know because I enrolled in it as a normal hearing study subject to help out), will eventually help other people struggling with the decision of going bilateral, or staying with a single CI. In addition, she is earning money, which for a 16 year old approaching her coveted driver's license, is a big deal :-), especially at $4 for a gallon of gas.

In addition to the main thrust of the NU study, Dr. Kong recorded Nichole speaking in order to determine if her speech generation improves, declines or stays the same after going bilateral. Here is a 3.5 minute long MP3 sound recording of Nichole telling a story. They gave her just the starting point, and told her to make up a story on the fly (thus some "ums" as she pauses to figure out where to take the story next).

I thought some parents of smaller kids would be interested in hearing how Nichole speaks. Keep in mind that she was not diagnosed with a hearing loss (70dB flat - moderate-severe bilateral sensori-neural hearing impairment) until 18 months old, and only spoke a handful of words to that point. She started wearing hearing aids at 20 months. We did Auditory Verbal therapy until she was 3 years old (though of course we continued doing it at home). Her hearing stayed at that level until her teenage years, when it started getting worse. She was at about a 100dB loss when she/we decided to get her first implant (right side) at age 15 (last year). This recording was made on July 2, 2008, just before her surgery to implant her left ear.Of course, I understand Nichole perfectly, but I would really like to hear from other parents to see what they think of her speech. Does she sound "normal" to you, or can you tell she has a hearing problem? I am too close to tell. Any comments?
(To listen to Nichole speaking click on Dean's Blog and download audiofile)

Note: I'm back from Dublin. My kids hugged and kissed me BEFORE asking for presents...We're definitely making progress.

Hurricane RACHEL!

Rachel's powerful voice is rocking the Deaf Community:
COOOOOOOOOOOUUUUUGH! Same old criticism that I get all the time - My life’s not good enough without ASL. Deaf people should own deaf children, not the parents.

First of all, I believe that deaf people or ANY people do NOT have the right to make a decision for someone else’s child. ONLY the parents should make the decision for their own child. (AMEN)

I believe that deaf children who qualify for AVT and CIs should NOT learn sign language before learning spoken language; however, I will not go after parents and say to them, “Do NOT teach your child sign language.” I will just share my experiences and tell them that I got a CI when I was a toddler and a second one when I was older, I was raised with the AVT approach and did not learn ASL, and I’m very happy with my parents’ decision. If they ask me what I believe, I will tell them that I believe that deaf children who QUALIFY for CIs and AVT should get CIs as soon as possible, go with the AVT approach, and not learn sign language until they master their auditory skills, unless they find that the CI and/or AVT is not working well for their child for some reason, and then they can try a different method. As I said, I’m not going to go in parents’ faces and say, “YOU should do this and this and YOU should NOT do this and this.” Parents have the right to make their own choices. Choosing the best method is an individual choice, not one big group’s choice nor one famous leader’s choice, not anyone else but the parents’.

Wow...inspirational words for the hearing mother of a deaf child with a cochlear implant. I cannot speak for my son, I can talk about him and his progress, regression, behavior, personality, but I do not know what he will say about this entire experience ten years from now. Please, please let him be as proud of himself as Rachel is of herself. Let him find a strong voice, stronger than mine based on his life experiences.

The Deaf Community requested to hear the voices of cochlear implantees and here she is...RACHEL! Her purpose is not to grandstand, it is to be proud of who she is, what she has accomplished and where she plans to go in the future. She speaks with that young, collegiate, "I'm going to kick some serious ass, because I can" voice. There is NO subtlety of hopefulness in her voice, she is convinced and self-reliant. Independent. Amazing.
This is part of a post I wrote back in December that quotes Melissa's comments about Rachel's travels in France:

Here's a story that is a real testament to how necessary the ability to hear
and speak are to be truly independent in the hearing world. As I had
written before, Rachel was in France. She was volunteering with an
organization called Volunteers for Peace. The organization is affiliated
with UNESCO and recommended by the Princeton Review, and so it looked pretty
good. According to their write-up, she was supposed to be working with
kids, with people with disabilities, helping out in the fields on the farm,
etc. Unfortunately, it turned out that the woman who ran the farm was very
nasty.

She was constantly yelling at the volunteers but especially Rachel
as she apparently does not like Americans. In addition, rather than
activities to help promote peace, she had the girls doing nothing but
cooking and cleaning the house. Rachel tried to speak to her about the
situation as she was the only one who spoke French and could communicate
with the woman, but the woman only got nastier. *There were two other volunteers with her for the week, both from Korea. The Koreans spoke English but not French. The leader spoke French but not English. So, my deaf daughter, whom the experts told me 20 years ago would probably never speak English well, acted as the translator between the leader and the Korean girls since she's fluent in both languages.*

NOTE: Rachel didn't start studying French until the second semester of her 9th grade year. Her high school was on a semester system, which enabled her
after taking French every semester to study through French 5 followed by a
full year of AP French her senior year and a semester of French in college.
Plus, she went on two exchange programs to France and then spent 3 weeks
there with her French friends last summer as well and has maintained email
and written communication in French with a couple of French pen pals since
9th grade as well.

...Rachel had spent $250 of her own money plus her frequent flyer mileage and
my parents' to get there, and so she wanted to try to salvage some of the
trip. Therefore, she opted to leave the farm and make her way to Bayonne,
France, where she has some very close friends and which is at the opposite
end of the country from where she was in the middle of rural France outside
of Marseilles.

She got a ride to the bus stop in the little town near where
she was. She knew that she needed to get to the train station in Marseilles
but didn't know anything more than that. In French, she asked two high
school students at the bus stop how to get there. They were very nice and
sat on the bus with her, showing her where to get off and telling her which
bus to transfer to. When she got off the second bus, she asked the bus
driver in French how to get to the train station. He told her how to get
there. She walked a few blocks to the train station and asked in French at
the station how to get to Bayonne. This entailed taking two trains for a
total of 7 hours, transferring in Bordeaux.

Throughout all of this, she was in constant touch with me and with her friends in Bayonne via cell phone. I cannot imagine what she would have done had she not been able to communicate as well as she can. She certainly would have been stuck at the farm for the full 2 and a half weeks. Also, being able to speak to her throughout this ordeal certainly kept me from being one basketcase of a totally anxious mom.

All's well that ends well as she's back home tonight safe and sound, having
enjoyed the last part of her trip much more than the first. Oh, one more
thing - If anyone knows of any great organizations that run volunteer
programs in Europe for college students, we'd love to hear about them
because she will be there again this summer and has about three weeks to
fill before starting her semester abroad in France in September, and she's
certainly not going through Volunteers for Peace again!
HOW'S THAT FOR AN AMAZING STORY? YEAH, SHE'LL BE AT MY HOUSE NEXT SUMMER FOR EUROPEAN VACATION PART 2 (CAN YOU BELIEVE HER MOM TRUSTS ME WITH HER?:))
Yes...Hurricane Rachel is blowing away Deafread.com with her candid and confident voice.

NEW WEBSITE FOR DEAF TWEENS - GO PAULA ROSENTHAL!

Well, I've got my pjs on and I was just about to head for bed, when I checked CI CIRCLE and found Paula's message:
Hi everyone,

It is my great pleasure to announce that the HearingExchange Kids
site is now live! I hope you'll take a look at the site I've created
for elementary and middle school aged kids with hearing loss. So many
of our kids are mainstreamed and don't know anyone else with a
hearing loss so now is their chance! :)Here's the link:
http://www.hearingexchangekids.com.

The site has a Forums area for the kids to talk to one another on the
message boards. It is password protected and registration is
required. For registration, the kids create a username and need to
enter their email address. Their email addresses will be kept
strictly private. Please encourage your children to use only a screen
name online and not their real names. I will be moderating the boards
to reinforce this.

I have posted a series of links within categories on the right
sidebar that will appeal to the kids. These include other blogs and
websites, captioned videos, games related to hearing loss,
information, conventions kids can attend to meet others, and a lot
more.

There's also a Kids Speak section where I will publish the kids'
short stories and poems. So, if you have a budding writer or poet, be
sure to tell them about it!

The kids can also participate by submitting links to their favorite
kids sites to the Links area.

I'd love for parents to be guest bloggers. If you have a funny story
that you and your child want to share, please email it to me. You can
also participate by sending me links to things you think will be
beneficial to the kids. The Links area is for general kid related
sites, but the sidebar categories and links will be geared
specifically for kids with hearing loss.

Please take a few minutes to look over HearingExchange Kids and let
me know what you think. Help spread the word by emailing this to
whomever you think would be interested so our kids can meet online,
develop friendships and help their peers!

Thank you,


Paula Rosenthal (bilateral Freedoms) Mom to Julie, age 12 (bilateral
Freedoms and 2 sons with normal hearing, ages 10 and 4

Paula also writes on the tween site, itself:
Welcome to HearingExchange Kids, “the” place for kids with hearing loss online! If you’re a kid in elementary or middle school and you’re deaf or hard of hearing, HearingExchange Kids is where you can hang out, meet other kids, play games, watch videos, get your poems and stories published and so much more.

I’m Paula and I wear two cochlear implant processors. I wore hearing aids growing up and went to public school. I was the only student in my grade with a hearing loss and I only knew of one other student in the entire school district who was like me. I had lots of friends but every now and then it would’ve been nice to talk with other kids who were deaf or hard of hearing. My friends with normal hearing just didn’t “get it” when I was frustrated in the cafeteria or missed the jokes while everyone laughed. I’ve created HearingExchange Kids to be a place for you to meet and talk with other kids who “get it.”
IS THIS WOMAN/MOM UNBELIEVABLE OR WHAT? YOU MUST CHECK OUT THE SITE, IT LOOKS AMAZING - GOTTA LOVE ROCKIN' HOT PINK! SHE HAS INCLUDED A LOT OF INTERESTING LINKS LIKE THE CI CIRCLE CAFE PRESS TEES, TOTES AND SWEATS WITH COCHLEAR IMPLANT RELATED DESIGNS - ALL PROCEEDS GO TO VARIOUS CHARITIES. GO! GO! GO! SIGN UP YOUR KIDS!!!

AN INFORMED MOM IS A POWERFUL MOM

For ten and a half years I did not know that yahoo groups existed. The last nine months of reading and sending messages, exchanging information with other parents living my same experience at different points of the journey has made me a stronger and better mother. Yesterday, we went to Pisa for Jordan's second mapping of the NUCLEUS FREEDOM. We sat down at the table: the audiologist with her computer, Jordan next to her, Luca behind Jordan and I was seated across from the audiologist. After hooking his processor up to the computer, she began making adjustments, but she didn't ask specific questions and I started getting antsy. Do I open my big, fat mouth or stay silent and let her do her job? Well, I am just not a patient person and my kid's hearing was at stake, so of course my aggressive self took over and I began firing questions. Another important aspect is to know your kid, observe him and his behavior, obviously that was the main reason I started collaborating with the audiologist. We worked on adjusting the level of background noise, by concentrating on sounds in the room like the fan, "Jordan, is the fan loud or soft?" "Is my voice louder or softer than the fan?" "Can you hear your own voice?" "Is it louder or softer than my voice?" etc. Then, I asked her if she did the Ling Test? She said she didn't know what the Ling Test was, I thought maybe it was an American thing, so I asked her to repeat some consonants and vowel sounds. She began going through the consonants like this: "ABBA- AKKA-ADDA-ALLA-ASSA" but when the consonant is attached to the vowel "A" it's easier for Jordan to distinguish as opposed to when the consonant is alone or attached to the "ee" sound. So, I started in an I'm-really-not-trying-to-do-your-job way, more like an I'm-a-proud-member-of-the-Pediatric-Cochlear-Implant-Circle-and-I'm-informed kind of way to do some Ling testing that you can see here with Nicole: To watch video either double click to go to youtube or deactivate music on the upper righthand side of the page

BECAUSE ANOTHER MOM FROM THE CI CIRCLE HAD SENT ME THIS VIDEO! AND ALSO BECAUSE I HAD SEEN ABBIE'S VIDEO OF HER ACTIVATION AND THE QUESTIONS THAT HER AUDIOLOGIST HAD FIRED ONE AFTER ANOTHER AT HER!

THANKS AGAIN, ABBIE, YOUR VIDEO HELPED MY SON!
At the conclusion of the mapping I asked the audiologist if she had made a lot of significant changes in respect to the old one, and her response was, "Yes." We also made certain that the volume feature was adjustable for those "extra-loud" school days. The FREEDOM PROCESSOR allows for four maps. P1 is his base map, P2 uses the AUTOSENSITIVITY PROGRAM, P3 ADRO and P4 is the base map on a higher level. She allowed me to download the new maps on my husbands computer key-drive (whatever you call that thing) that he obsessively carries with him, thank God! I like having copies of Jordan's maps just in case.
We said our goodbyes and headed for the Leaning Tower of Pisa. Given that the hospital is a three minute walk from the Tower and I spent a lot of time there breathing during Jordan's surgery, I kind of always have to visit Piazza dei Miracoli (Miracles Square- highly appropriate) every time we go for an audiological visit. Jordan got a foot long hot dog, had the man cut it in half because he only wanted mayonnaise on half of the dog and nothing on the other half and a can of peach tea. I watched all of the Japanese tourists-not many Americans-doing the typical Leaning Tower of Pisa pose where they contort their bodies and arms to make it look like they're holding up the Tower from falling, one of the most hysterical things ever seen and consistently reproduced!



I've become so Italian:)

KIDS JUST KILL ME...

This blog must be jammed with kids. I'm in a funky mood right now, my husband downloaded some MC Hammer on my ipod...what was he thinking? Anyway, I have to tell everyone about how funny these little Italian kidlings are that I teach at the pre-school - one day I'll talk about the middle school and high school kids, but they're a whole different breed. Well, there is this one group of four year olds that I've been teaching for two years and in this class two puppy love couples have formed...one couple, Andrea and Giulia must be soulmates because I have never seen any couple as in love as these two niblets. They hold each others hands, hug each other and have deep conversations during my English lesson only taking time out from each other to Hokey Pokey, and I just sit there watching them and laughing to myself. I swear the last lesson they kissed each other on the lips, so of course I jumped up and was like, "Whoa, no hanky panky on my shift!" Shocking. In that same class there is another couple, Ginevra and Filippo who hold hands and hug during English class. I promise all I do is sing, dance, use flashcards and stuffed animals! WELL, during the last lesson Giulia(the girl from couple number 1) was absent and Filippo (the boy from couple number 2) was absent as well. So, loverboy Andrea (Andrew)started making the moves on Ginevra...when he tried to hold her hand, she shot him a look like "BURN AND DIE SCUM" and said, "I have a boyfriend and you are not him!" I was on the floor, lost it totally, geeze they start early in this country! I'm so naive.
Just thought I'd jam-pack this blog with some amazing cochlear kids, my four year olds inspire me every day...(TO DEACTIVATE THE MUSIC CLICK ON THE STOP BUTTON IN THE UPPER RIGHTHAND CORNER)
AMAZING BROTHERS ELLIOT AND OLIVER!!


HERE'S GAGE AGAIN:

HIS MOM VAL BLOGGED:
Gage is very dramatic about the weather. Our power was out for 18hrs. We read and told ghost stories. They had a ball.

NOTE: CHECK VAL'S BLOG REGULARLY BECAUSE SHE IS ALWAYS POSTING AMAZING VIDEOS OF HER KIDS!

I ALSO WANTED TO ADD THIS LINK TO A WEBSITE WHERE YOU CAN DOWNLOAD FREE LYRICS. JORDAN LOVES MUSIC BUT HAS A REALLY DIFFICULT TIME WITH THE LYRICS, SO I HIGHLY RECOMMEND DOWNLOADING TO HELP OUR KIDS REALLY UNDERSTAND WHAT THE SONGS ARE SAYING!!! THANKS TO THE MEMBERS OF THE COCHLEAR FORUM FOR POSTING THIS!

HOLIDAY DEPRESSION IS AN INTERNATIONAL THING

I'm about to get deep here, hold onto your pants...The Holiday season brings gifts, hustle-bustle chaos, exasperatingly nauseating lovey-dovey couples and serious depression. The holidays are a time to celebrate family, reminisce, review the past year and suffer for those who have lost loved ones and dreams. As we go through the motions of our daily lives, we don't have time to sit back and ponder our failures and successes nor do we take the time to tell our loved ones how much they really mean to us. The holidays give us a pause just long enough for it all to come crashing down on us...especially for the mom of a newly diagnosed deaf child. The relatives sitting around that table look at her and her baby with...PITY. THERE WAS NOTHING THAT PISSED ME OFF MORE THAN WHEN PEOPLE LOOKED AT MY CHILD AND SAID, "POOR LITTLE BOY, HOW DID HE BECOME DEAF - WAS HE BORN THAT WAY?"
A 26 year old mother of a child diagnosed with bilateral sensorineural deafness just posted the most desperate cry for help I have ever read on these groups. She is in serious difficulty financially and emotionally and is drowning. The most blinding aspect of her letter was how much she was in love with her son and didn't know how to help him because the system kept slamming doors in her face. She was denied three times by her insurance carrier for a cochlear implant. Here's your son's future just a four hour surgery away, but I'm sorry, he can't have the surgery. How does a mother deal with something so damn frustrating? How do you manage the overwhelming feeling of impotence in not being able to help your child no matter what you do, where you go, with everyone saying my least favorite word "NO, NO, NO, NO" in your face. How do you think she is passing her Christmas?
I wrote her a long letter and told her to begin signing. What an amazing opportunity to take control back, to feel like she is doing something productive in a time period
where she feels completely out of control. Take action. Give yourself and your son a method of communication that will then serve as a bridge to better communication when he receives the cochlear implant.
Jordan received his cochlear implant three years ago during this time. We were sitting in the hospital room in the SANTA CHIARA HOSPITAL in Pisa, watching the devastating Tsunami that hit Thailand during his ci surgery. We spent six days in the hospital and the most beautiful woman named Josephine shared the moment with us. She had had rhinoplasty and there we were Jodi, Jordan and Jo, the three JOs lined up in a row (something impossible in Italy, no one has a name with a J). They had given Jordan an iv for his antibiotic and the last bag was taking forever, so I had Jordan in my lap and JO jumped up on a chair to hold the bag in the air to make it drip faster because the line was ripping out of Jordan's arm and he was in pain. She stood and held that bag for thirty minutes, the longest bag of antibiotic ever, she was just an amazing person, a total stranger, and we managed to get through one of the most difficult periods of my life together.
After the cochlear implant surgery and Jordan's tragic mapping experience I went into a major depression. When I saw that Jordan could hear and repeat sentences two weeks after his activation and my speech therapist for the first time in our eight year journey, smiled, my walls crashed and so did I. I began having panic attacks while driving, didn't want to get out of bed, didn't want to leave the house and suffered. I went to my doctor to ask for help when I started fearing for my kids because I was after all the chauffer. He told me about a new wave medication for depression called ciprolex that had NO SIDE EFFECTS, I think that was the name, I can't remember and I said "bring it on." I said bring it on, but the idea of taking a drug terrified me. My life has not been as difficult as most, but it certainly hasn't been easy and I couldn't understand why at that moment when everything FINALLY was on the upswing, I was crashing. And yet, I did understand. No one needed me to be strong anymore, I could be weak and I was. I took the medication for one year and it saved me. It rendered me just numb enough to work through all of what had set me off.
Why do I love these yahoo groups so much? Because I have been where these new mothers are now and I understand their suffering, so maybe just maybe my experiences will help the next. This season brings so much suffering and pain but it also brings unexpected gifts from people we don't even know. Look around at all the people we love and who love us, really look at them and tell them how important they are to you. I guarantee that for one brief moment, all that is difficult, stressful and tragic will pass. I have music back in my life after I had gone a long time without it, and it sounds so good.

TUTTI I RUMORI DEL MONDO...(ALL OF THE SOUNDS OF THE WORLD)

Last night, the NUMBER ONE Italian television station RAI 1 had the opportunity to educate a country...and they blew it. A huge thank you goes out to my friend, Rosy, who called me at 9:21 pm to tell me that they were telling Jordan's story on the RAI. I thought maybe Jordan's interview of June 6th where he played the piano on National Television was being played again, but when I turned on the tv and saw the film, I realized that there was a film about a deaf child. I locked myself in a room, prepared to bawl my eyes out and began to watch. I could not believe that Italian television was approaching the argument of deafness on the 23rd of December, a time when families gather to watch nostalgic Christmas movies.
I quickly got into the film because the first scene I saw was when the mother is coming to terms with her child's deafness and cranks up the tv, screams his name at the top of her lungs, jams the stereo and finally slams a vase with all of her strength to get a reaction from her deaf child who plays contentedly never flinching. The mother then overdramatically throws herself on the sofa and begins bawling because she is coming to terms with the fact that her son will never hear.
The father suffers in his own way and tries to help pull the mother out of her world of agony but he just doesn't have what it takes to help her. Any mother reading this knows that we must create our own level of peace before accepting and reacting to our child's disability...it's a personal coming to terms moment and experience.
After this episode, the mom declares, "OKAY, let's go get the cochlear implant right now!" So they drive hours to the hospital, the dad goes to park the car and the mom finds herself in the hospital "waiting room" where she sits contemplating the surgery. A hospital bedroom door opens and we see a little girl with a lost look on her face and a bandage wrapped around her head. The mom makes it to the point where she meets with the surgeon, signs the consent form and hands her baby to the nurse to perform testing. She sees her child cry, stands up and says she wants to be with her baby throughout the testing.
The next scene has her in the hospital room, pondering the surgery, she stands up and escapes from the hospital, leaving her husband who had had a fender bender which had prohibited him from reaching her sooner in the hospital room.
The next interesting and responsible part of the film was a series of flashes of doctors' visits discussing the various approaches to deafness...sign language, hearing aids, cochlear implants, the child being tested, second-eighth opinions, during which time THE CHILD IS NOT HAVING ANY ACCESS TO SOUND. This portrays the agony of the mom, but not the immediate needs of the child. The final doctor they consulted was the strongest voice in the film. This doctor said that they should immediately fit the child for hearing aids for his profound hearing loss and if the child did not receive any benefit, the only other option was a cochlear implant if they wanted their child to have access to a hearing world. This doctor had a deaf nephew who currently attended the University and was "fighting off the women."
The mother decided she liked that doctor and was prepared to order hearing aids, when she received a MIRACULOUS telephone call from her friend who told her about an engineer who was busy working on the sixth generation of digital hearing aids. Then a love story begins and the deaf plot is lost. In the end they put on the miracle hearing aid, Alessandro turns to the sound of music and total joy ensues.
HMMMMMMM. In Italy, the Governmental National Healthcare System pays for Phonak conventional hearing aids as well as covers the cochlear implant. THEY DO NOT COVER 5000 + EURO WORTH OF DIGITAL HEARING AIDS. THEY HAD THE OPPORTUNITY TO EDUCATE ITALIANS ON JUST HOW EFFECTIVE THE COCHLEAR IMPLANT IS IN CHILDREN WITH A PROFOUND HEARING LOST AND THEY DROPPED THE BALL!
The ending of the film showed the boy at age eight scoring a soccer goal and the crowd going wild...it took all I had not to puke...yet it was important at the same time, very important because the deaf child was speaking and not signing...revolutionary for Italian fiction tv.
IT IS FUNDAMENTAL THAT MEDIA IS A REFLECTION OF MODERN TIMES AND PROGRESS...THIS FILM DEMONSTRATES THAT WE ARE STILL TEN YEARS BEHIND AND ONLY ENHANCED FEAR WITH REGARD TO THE COCHLEAR IMPLANT...EXTREMELY IRRESPONSIBLE!

Meet CORMAC one of TRIPLETS!!

Jen sent me this video a week ago...thank you so much!
Jen wrote:

This is Cormac 3 1/2 months post activation. For those who don't know, Cormac was born profoundly deaf in both ears. He recieved bilateral Cochlear Implants on 6/21/07at 14 months old. He was activated on 7/23/07 and 7/24/07. In this video I am covering my mouth so he can't read my lips. As of December, Cormac understands about 200 words. He has also started talking. He is one smart little cookie! (by the way, he said "ookie" yesterday for the first time!)

I took this video a while ago but did not post it becasue I was not keeping up the blog. Cormac understands around 200 words at last count. He knows the entire alphabet (which he can also sign a lot of ) and he knows his numbers 1-5 and signs those as well. He is already starting to talk. He has a few words but my favorite is Mom. Not too shabby for a 20 month old who has only been hearing for not even 4 months!

Each day the gap is getting smaller and smaller between him and Ciaran and Colin.

AMAZING!!! FOLLOW CORMAC AND HIS BROTHERS' STORY HERE.

RACHEL CHAIKOF: SIGN HER UP FOR THE AMAZING RACE...

First of all, I would like to thank all members of the yahoo support groups Pediatric Cochlear Implant Circle, Listen-UP and Learn2Hear for their comments and love in response to our announcement about RALLY CAPS being published in Italian, they were GREATLY appreciated!
Now, everyone knows that I love Rachel Chaikof, because she is just the primary example of where I want my son to be at age 20: in college, independent, eloquent, confident and of course...a world traveler. When I was 20, I road-tripped to Key West for Spring Break with my best friend Julie. We drove 24 hours, slept nine in a room and shared the floor with some ugly cockroaches...but THAT is what being young and drunk at Spring Break is all about. I want my son to experience crazy stuff like this, but will it be possible for him to travel and handle problems that may potentially arise? Get a load of Rachel's trip to France...(as told by her mom Melissa (see her comment on the Supermoms post):

Here's a story that is a real testament to how necessary the ability to hear
and speak are to be truly independent in the hearing world. As I had
written before, Rachel was in France. She was volunteering with an
organization called Volunteers for Peace. The organization is affiliated
with UNESCO and recommended by the Princeton Review, and so it looked pretty
good. According to their write-up, she was supposed to be working with
kids, with people with disabilities, helping out in the fields on the farm,
etc. Unfortunately, it turned out that the woman who ran the farm was very
nasty. She was constantly yelling at the volunteers but especially Rachel
as she apparently does not like Americans. In addition, rather than
activities to help promote peace, she had the girls doing nothing but
cooking and cleaning the house. Rachel tried to speak to her about the
situation as she was the only one who spoke French and could communicate
with the woman, but the woman only got nastier. *There were two other volunteers with her for the week, both from Korea. The Koreans spoke English but not French. The leader spoke French but not English. So, my deaf daughter, whom the experts told me 20 years ago would probably never speak English well, acted as the translator between the leader and the Korean girls since she's fluent in both languages.*

NOTE: Rachel didn't start studying French until the second semester of her 9th grade year. Her high school was on a semester system, which enabled her
after taking French every semester to study through French 5 followed by a
full year of AP French her senior year and a semester of French in college.
Plus, she went on two exchange programs to France and then spent 3 weeks
there with her French friends last summer as well and has maintained email
and written communication in French with a couple of French pen pals since
9th grade as well.

...Rachel had spent $250 of her own money plus her frequent flyer mileage and
my parents' to get there, and so she wanted to try to salvage some of the
trip. Therefore, she opted to leave the farm and make her way to Bayonne,
France, where she has some very close friends and which is at the opposite
end of the country from where she was in the middle of rural France outside
of Marseilles. She got a ride to the bus stop in the little town near where
she was. She knew that she needed to get to the train station in Marseilles
but didn't know anything more than that. In French, she asked two high
school students at the bus stop how to get there. They were very nice and
sat on the bus with her, showing her where to get off and telling her which
bus to transfer to. When she got off the second bus, she asked the bus
driver in French how to get to the train station. He told her how to get
there. She walked a few blocks to the train station and asked in French at
the station how to get to Bayonne. This entailed taking two trains for a
total of 7 hours, transferring in Bordeaux. Throughout all of this, she was
in constant touch with me and with her friends in Bayonne via cell phone. I
cannot imagine what she would have done had she not been able to communicate
as well as she can. She certainly would have been stuck at the farm for the
full 2 and a half weeks. Also, being able to speak to her throughout this
ordeal certainly kept me from being one basketcase of a totally anxious mom.
All's well that ends well as she's back home tonight safe and sound, having
enjoyed the last part of her trip much more than the first. Oh, one more
thing - If anyone knows of any great organizations that run volunteer
programs in Europe for college students, we'd love to hear about them
because she will be there again this summer and has about three weeks to
fill before starting her semester abroad in France in September, and she's
certainly not going through Volunteers for Peace again!

HOW'S THAT FOR AN AMAZING STORY? YEAH, SHE'LL BE AT MY HOUSE NEXT SUMMER FOR EUROPEAN VACATION PART 2 (CAN YOU BELIEVE HER MOM TRUSTS ME WITH HER?:))

Remember Rachel??

NEVER UNDER-ESTIMATE THE POWER OF A MOM

I am exploding with unbelievable news today and I don't really know where to begin. First of all, I just read this on the CI CIRCLE:
From our Cochlear rep:

'Consumer Marketing has had the opportunity to work on some great national
television opportunities over the past year.
Our most recent one is an ongoing storyline on the soap opera 'All My Children'.
This week they are scheduled to air episodes that will feature the character of
Spike, a young boy, having implant surgery.
Please tune in to your local ABC affiliate to view these shows on Dec 12, 13 and
14 (see local listings for times).
As part of our partnership with AMC, we've consulted with the show on scripts,
as well as provided product and education to their staff.
Cochlear staff actually went to their studio in New York to help with correct
propping.
We are very excited to see these shows air to an audience of 2,926,000 people!
If you are unable to catch the daily soaps, we will be capturing the clips to
share with you.
We are currently working with show producers on other ideas of how we can
partner to spread education and awareness of CIs. "

Spreading Cochlear Implant Awareness by means of media serves to educate the masses so that a friend of a friend can pass the word on to a new mother who may not have otherwise known all of her options. One trend that I have begun noticing is that there is not too much diversity on these yahoo groups, which leads me to believe that not enough parents are being informed of their options or even the support that is available at Early Intervention levels, Pediatricians' or Audiologists' Offices.

The Pediatric Cochlear Implant Circle decided to do something about making more information available by creating an International PARENT TO PARENT: COCHLEAR IMPLANTS FOR KIDS BROCHURE. This endeavor, lead by a very informed, educated and active parent, Lydia, together with the Gift of Hearing Foundation has come to fruition!!!! WAFREAKINGHOO!!! This brochure, thanks to the joint effort of 1400 parents who have provided the names of doctors, audiologists, surgeons, ci centers, speech therapists, early intervention programs, etc will be available all over the USA and other English-speaking countries.

Many times mothers of children with disabilities leave their careers, abandoning professions that they spent years of education trying to secure and achieve in order to dedicate their time to helping their children learn to speak using the cochlear implant or hearing aids. What a waste of a good woman...right? WRONG! These are the women who are paving the way for future children, who are sensitive and intelligent enough to recognize their kids' needs and work their asses off to make sure they are met. One of the women on the list this week went to fight the school to make sure her daughter's needs were identified and met...and she is winning. Every battle we win makes us stronger and the system stronger for the next child.

A couple of days ago I re-posted Hailey's video with the Santa Surprise, well Hailey's mom Selena just dropped a bomb on the Listen-Up group:

Once again a member of our family is starting a new journey in her life,
however this time it's not Hailey. It is however a journey that will greatly
affect Hailey.
I am glad to announce that I am now the newest student at Bethel College's
School of Arts and Sciences. I'll be working towards my B.A. in Sign Language
Interpretation. Of course after not being in school for almost 11 yrs now, I'm scared
wittless. However I feel blessed with an awesome support system(hint hint, momma
bear). Even though I know it won't always be easy, I'm confident that I will do
well. While I won't actually be able to start ASL classes till the fall(ASL 1 isn't
offered in the spring), Jan 16th will be my fist day of class. I'm going to work
at getting some of my General Studies out of the way.
Anyway, Just thought I'd share.

Education is an ongoing process and we learn from our children every single day. Selene is an inspiration for every mother out there who has deviated her path to fight for her child...POWER TO THE MOMMIES, LADIES!

HOT OFF THE PRESS (WHAT IS WITH THE MOMMAS TODAY!!!??) MEET PAULA (AS IF YOU DON'T ALREADY KNOW HER:)
Paula Rosenthal, J.D. is married and has three children. She, her husband and daughter are all hearing impaired. Her sons have normal hearing. A law school graduate, Paula is the publisher of http://www.HearingExchange.com, an online community for people with hearing loss, parents of deaf and hard of hearing children and professionals. She is also a writer and speaker on hearing loss and related issues. To contact her, send an email to info@hearingexchange.com.PLEASE READ HER 5 Tips to Help Your Deaf or Hard of Hearing Child Enjoy the Holidaysby Paula Rosenthal, J.D. I AM SURE YOU WILL FIND IT EXTREMELY USEFUL

Now, just to remind everyone why we are working so hard to create awareness...here's the latest from Val, co-owner of the support group learn2hear and her daughter Brooke, one of our beloved Cochlear Kids!!!


LATE ENTRY: ANOTHER AMAZING WOMAN/MOTHER...CHECK OUT RACHEL'S BLOG OF SIGNING TIME:The Signing Time Foundation has partnered with Signs of Hope International to bring Signing Time to Ghana Africa.I

TRUST YOUR MATERNAL INSTINCT...DISTURB YOUR DOC

Today after reading a Mom's post on Ci Circle, I thought it would be important to share this situation with anyone reading this blog who is not a member of the yahoo group. I contacted the mom, who is in the middle of the crisis, yet appears calm and she said, "Yes, by all means go ahead and share the story! I want to help inform as many parents as possible." What a woman! Even in the midst of a dramatic event, her first thought is to help the next. I'm still waiting on a photo of her daughter, but as you'll see, she has her hands full right now...
THIS WAS HER INITIAL POST:
Hi there everyone!
I was fixing my daughter's hair this morning and noticed that she
has a bump that is the size of a small grape at one of her incision
sites. It is like a large blister. It is squishy like a blister
too. The bump is not red, but the skin all around it is.
I called the surgeon's office and explained it to them. They told me
to just watch it and if it changes to let them know. The thing that
is strange to me is that she had surgery on this ear back in May.
That seems like a long time to go by and just now having something
happen to it. She does not regularly wear her BTE (behind the ear processor)
on this ear. She typically has the body worn processor. The only time she does have
the BTE on is when she is getting ready for bed.

Has anyone else ever had this experience? Any suggestions?
I have to brag a bit while I am at it!!! Today is my little girl's second
birthday. If you ask her how old she is she without skipping a beat
will say two and hold up two fingers. She counts to ten by herself.
Last night she was counting the number of balloons in a picture
(with her CI's off) and counted to ten on her own with no prompting.
I guess I still think this is pretty amazing for a deaf kiddo! :)

AT THIS POINT THE MOTHERS OF THE PEDIATRIC CI CIRCLE BEGAN RESPONDING WITH ADVICE, A COMMON THEME WAS TRUST YOUR INSTINCTS AND SEEK IMMEDIATE MEDICAL ASSISTANCE.

THIS WAS THE MOM'S MOST RECENT POST:

Hi there,
I wrote last week and mentioned that I noticed a bump at my
daughter's inscision site. This particular ci surgery was back in
May of this year. My daughter, showed no signs of fever,
discomfort, etc.

I called my surgeon's office and talked to the nurse and she had no
idea what to say. I was not impressed at all with the amount of help
given. She made me an appt. for the 14!!!
The next day (last Friday) I decided to have my local doc take a
look. He looked at it for about 5 seconds and asked for the
surgeon's name. He went and called immediately. He was back in less
than 5 min. and said that I shouldn't take time to go home I just
needed to head up to see my surgeon. I was frantic! How bad could it
be for me to rush to see my surgeon??? I called my husband and he
met me and we took off for the hour long ride. I don't think I
calmed down the whole way there.

My surgeon took one look and said that she had an absess and she
would need surgery that day. We immediately checked into the
hospital and they did surgery to drain the bump. The main concern
was the bacteria. They wanted to know what type it was and how far
it had spread.

Making my long story a little shorter, we just got home...two days
later. It turned out that the bacteria was nothing too harmful and
it didn't get to the implant. She has a tube where the bump was to
drain for the next couple of days. She also had a semi-permanent iv
put in and we have to put in antibiotics in once a day through this
iv tube. A nurse is coming in the morning to train me. The
infectious disease control lady told us that we would do an overkill
with the antibiotics just to be on the safe side.

The doctors thought that if we wouldn't have brought her in on
Friday she would have had a horrible temp and be extremely sick by
this time.

Moral of the story: BE VIGILANT ABOUT EVERYTHING AND TRUST YOUR GUT INSTINCTS!
The doctor said that this was pretty rare. He did have one other
similar case about a month ago and before that it had been nine
years.

The hospital is not a fun place to spend the weekend! It isn't cheap
either!!!

We as parents know our children BETTER than the doctors, and yet oftentimes we are afraid to "bother" them with something that might not be considered valid in their eyes. I've been very lucky here in Italy to have found doctors and professionals who make me feel that it is okay to call if I feel nervous or concerned about any aspect of Jordan's implant. We trust these doctors with our kids, no easy task, yet we are afraid to disturb them...I hope this post will make another mother think twice before being worried about disturbing a physician.

MUSIC IN HIS EARS

As I've said before Jordan attends a middle school specializing in Music Education. He has guitar lessons two hours a week, Music Appreciation one hour a week and Music class during school hours two hours a week. School started on September 13th and the school gave their first concert yesterday in honor of the holiday today..."TUSCANY DAY." The choir teacher sent home a notice saying that all students should dress in a white button-down shirt, black pants and a black ribbon to be tied around the shirt collar, as well as a pair of shoes that were nicer than tennis shoes. We had discussed the time and place of the big event the day before, yet before Jordan left to take the bus to school, he said, "Mamma, you remember what's happening this morning, don't you?" I looked at my son with that look that says, "Do you think that I could forget that you have to sing in a Church this morning...you are wearing a black ribbon tied around your collar...son!" He understood my "What kind of question is that look?" laughed and went on his way.

I mean, have I ever missed a school event or function? When he was in pre-school I arrived twenty minutes early to every event just to grab the front-row seat (totally rude of me because I'm like five nine)and position the videocamera (that is now broken:(). I sweated through end of the year program after program where as soon as the music would start, Jordan would sprint to my lap and slam his mouth shut refusing to sing. His teachers would try in every way possible to convince him to rejoin the group and sing, then Jordan would throw a temper tantrum, kick and scream, and I would hug him and sit there watching the rest of his class sing adorable little Italian songs that I didn't understand anyway. The third year of pre-school (five years old)after sitting in my lap for the first four songs, the teacher popped a casette in the recorder and a song started jammin'. Jordan jumped up, got in line with the rest of his class and began groovin' to a dance the teachers had taught the class. I was so shocked that I didn't even get it on tape...after three years of bringing the videocamera for nothing, the thought never occurred to me to tape this dramatic event. What Jordan could hear with his hearing aids was enough to give him rhythm, but not enough to assist him in learning the lyrics and songs spontaneously.
His participation slightly improved year by year because I taught him that if he mouthed the word "watermelon" over and over again, it would look like he was singing. How terrible is that? But learning the Italian songs was just too trying on me, I didn't understand the words or the melodies, so for me it was just too much...I focused on other aspects of learning like keeping up with the three hours of homework a day he had beginning in first grade. You just can't even imagine how much work the Italian School System gives our kids, when Jordan will have finished Middle school here, he could sleep through high school in the States and still get straight As.
Anyway, to make a long story short, when Jordan was implanted all of this stress with regard to music gradually changed. He could hear, he could hear to the point that he could catch the repetitive refrains to the songs and actually began singing along with his class. It's so funny, cause he doesn't just sing, he grooves and dances while he sings - crazy. We started him with piano lessons one year after he received his cochlear implant,nothing intensive, just so that he could have music in his life.

Fast forward to yesterday morning. I arrived outside the DUOMO of Grosseto and began looking for Jordan. His Math teacher (they are called Professors in Middle School and if you say "teacher" they get offended)told me he had been "running around" and she had not recently seen him. I digested and continued looking for him. When I found him zigzagging across the top step of the Church, I stopped him, disciplined him and told him to get in line to enter the Church.

Time out, FYI: My husband is Catholic and I am Jewish...religion is another post entirely that one day I will get to, but now is not the moment. Just keep that in mind while I describe the rest of this, because for some, this Choir moment would have had more of a religious significance than it did for me.

Jordan walked inside the Church with his classmates and headed to the stairs behind the altar, chaos ensued as about five schools and parents, grandparents, etc. raced to find a good seat. This time they were faster than me and I ended up in the sixth row back on the right, luckily I had a pretty good view of Jordan that was only slightly obstructed by a woman standing, who was short enough to be able to stand without me reaming her out yet tall enough to annoy me.

The Choir teacher, dressed in a very festive cherry red blazer made the necessary introductions, waved her arms and the choir along with Jordan ALL started singing...THE ITALIAN NATIONAL ANTHEM! There was my little Jewish American son in his adorable black ribbon bow tie singing The Italian National Anthem in a Church! One of the most beautiful moments of my life...I started bawling, of course, whipped out the tissues and began the dabbing process. Jordan kept looking over at me and I kept sending him the thumbs up sign. The Choir sang two songs, then mini orchestras played about twelve more, I knew he was dying sitting on the altar, but he managed to behave. After the orchestras finished their finale, the Choir stood up and and sang two more songs accompanied by the orchestra. Just before the final two songs, I turned around and saw my mother-in-law standing behind me, neither one of us had known where the other one was...divine providence:) So, we watched the final two songs together and just before the final song she leaned over and said, "Your mom would have been happy if she were here to see Jordan singing..." Well, that just about did me in, so I started bawling again and went through another pack of tissues. I have to say that I was pretty thankful when the concert ended, because I mean how much can a person take?? Very emotional experience. It just gets better...
I went to thank the Choir teacher and as I look over to the right I see Jordan hugging my mil and my mil is sobbing, tears streaming, and Jordan is just letting himself be hugged.
My mil took Jordan's diagnosis really hard and was truly devastated by the fact that she couldn't sing to him or teach him all of the songs she sang as a child that were such an important part of her childhood...my mom was a singer when she was young. I'm tonedeaf, but I jammed to Olivia Newton John and the Osmonds growing up...yes, I too sent Shawn Cassidy fanmail. Soooo, this was a colossal event for my mil who continues to be amazed by her grandson.
On the way to the car, Jordan looked at me and said, "Mamma, why were you and Nonna crying?" (fishing for compliments) I looked right back at him and said, "Because you are deaf. When they told us you were deaf, we never in a million years would have remotely imagined that you would be singing in a Choir in a Church at age eleven and seeing you sing makes us realize that you WILL BE ABLE TO DO WHATEVER YOU WANT IN THE FUTURE." Jordan looked at me, smiled and said..."Mom, can we go to the Newsstand and buy a pack of Yu-ghi-o cards?"

ABBIE'S ACTIVATION VIDEO: EXCELLENT AUDIOLOGIST!

ABBIE BLOGS...

...I am grateful that I finally accepted that I am deaf, it is a part of who I am.
I am grateful for the experience of total silence; it made me a better person by turning off the music of the daily hustle and bustle of life forcing me to put things in perspective.
I am grateful for my family who supported me every step of the way especially those who were my ears when I had nothing to give back.
I am grateful for being blessed with the perfect pooch. She is my ears when I am sleeping. She never leaves my side. She accepts me as I am and leaves all my hardware alone.
I am grateful for my friends who were always concerned but never once pitying me and always willing to help me.
I am grateful for the people I have met who are just like me. They opened my eyes making me realizing that I am not the only one walking this earth without hearing the crunch of the grass give way underneath my feet.
I am grateful that I have a awesome audiologist who listens to me.
I am grateful for everything that I have seen, touched, smelted, tasted and heard for it serves a higher purpose.
I am grateful for the men, women, and children that walk in and out my life opening doors to new things.
Most of all, I am just plain grateful for being chosen for this opportunity to wade through life being me...


HOW BEAUTIFUL IS ABBIE!?!! (BTW, a full set (of acrylics) in Grosseto costs minimum 90 euros - crazy!) Aside from this, the audiologist on - but not seen in- this video taught me a great deal about mapping and mapping strategies. She shot specific question after question at Abbie allowing for some fine tuning of Abbie's map. It's almost ten here, but as soon as I have a minute, I plan on writing a list of questions asked by the audiologist as well as her explanation of the three mapping modes - that I never knew existed...I did not know that for small children the surgeon could perform an ABR during surgery to test the cochlear implant and predict a map based on nerve responses...AMAZING! Although now that I'm thinking about it, I vaguely remember the surgeon telling me they tested the implant while Jordan was under and that it worked...but I did not realize that an ABR performed during the surgery could create a map! Not all audiologists are created equally, hats off to Abbie's and thanks to Abbie for allowing me to post this. (Abbie is a member of the yahoo support group CI HEAR)

-------------------------------MORE JOSH SWILLER--------------------
SHARON PAJKA-WEST PHD. THE AUTHOR OF THE BLOG: DEAF CHARACTERS IN ADOLESCENT LITERATURE (LIVE FOR HER INTERVIEWS!) JUST BLOGGED ABOUT JOSH SWILLER'S APPEARANCE AT GALLAUDET YESTERDAY...CHECK IT OUT! (I'M SUCH A FAN!)

CI ACTIVATION ADULT-STYLE

One of the most frustrating and difficult moments for a parent is the activation process, because your child cannot tell you what he hears and how well he hears each sound. Jordan is improving in this process and watches the computer screen as the audiologist does his maps. He'll say, "Raise this two levels" or "Lower this three levels," etc, but what about the babies? This is why it is so important to have your children mapped by a trained audiologist with a great deal of experience and for the parents to observe their kids to see what type of results they are having with the implant. I met Jen from Tennessee when she left a comment telling me about these videos on another post and they blew me away. Ironically, she wrote how the second video was boring because she spent the entire video saying, "This is too loud or your voice is too soft..." this was the part that interested me the most as a parent of a child who was unable to make such clarifications at his first activations. Perhaps by watching Jen's videos, parents will have a better idea of what questions to ask their children and their audiologists. Jen writes a blog about her cochlear implant experience, I am including a post under the videos about what exactly she has been hearing with her cochlear implants, this woman is beautiful...




Part 2



You'd be surprised. I can't believe what I'm hearing...it has just been so incredible. I think I'll just make a list:
*Tuesday I heard my kids talking. I could understand the three oldest ones well, and could understand hubby fairly well.
*Wednesday I woke up early...at 7:30. Might not seem early to everyone else until you consider that I usually sleep in when the kids don't have school...but I wanted to put the processor on and start listening! When I was cooking Ellie got some sugar on a styrofoam plate and was shaking it about three feet away and saying, "Can you hear this, Mama??"...and I actually could hear it scratching on the plate. And...this was with Hannah Montana on the TV in the next room! Incidentally, I haven't ever realized how loud the girls keep the TVs...but I can hear them ALL THE TIME.
*My mom texted me when she arrived at the airport in Houston. I was in the middle of washing dishes and I abandoned the sink (left the water running) and went to try to call her. I locked myself in the bathroom and dialed. I heard the phone ring and then I heard her say "Hello, Jennifer!" Right about that time the processor shorted out. As I mentioned before, it has issues, and at that particular time, the current issue was shorting out every time I switched programs. Anyhow, realizing that I couldn't talk to Mom anymore, I took the phone to Katie and she finished my conversation. It would have been a very difficult call anyway...she was in the airport and her cell phone connection was terrible, so it was probably for the best...but I called her...and I understood her...for all of about three seconds :). (I was relieved to find that while the sink was overflowing when I got back, it was thankfully overflowing into the other side, and not overflowing all over ky kitchen floor.)
*When I got a shirt out of the closet to get ready for church, I heard a tinkling that I hadn't heard before. I looked and located a few hangers at the end of my closet that were bumping together and making that tinkly sound!
*At church, the preacher's wife said that she wanted to test me, so she had me look away and then she asked, "How are you doing?" I grinned and looked at her, and said, "I'm fine, thanks!!" :) During church I deliberately looked away from the speakers several times to see if I could hear them without looking. I could nearly always pick up a few words here and there. The singing in church was astonishing...several voices actually sounded just like I remembered them from almost 18 months ago, before I started losing what hearing I had left. I had not at all set my sights on getting music back...but if it sounded that good at just over 24 hours...wow, I can't imagine what it will sound like in the next few weeks and months!
*We went to my mom's after church on Wednesday to see them (they got in from Nicaragua while we were at church). Mom presented me with the Metropolitan Museum of Art's "A New York Christmas" CD...jazz Christmas music!!! It doesn't sound just right yet...but, ya know...I think that it's possible that by Christmas it may be great :).
*Thursday morning when I woke up I didn't put the processor on right away. I have always had a hard time putting Thing 1 on due to the vibrotactile problems...when I put it on, I always get a head buzz that's mildly uncomfortable. I'm having a hard time getting adjusted to the idea that Thing 2 isn't the same way...I can just slap it on, it gives me a few little beeps, then comes on...just sound, no discomfort. When I finally did put on Thing 2 I was in the bathroom, and the noise just about blew me away. I headed out the bathroom, down the hall, and there was the TV again...the squawkbox...with a football game blaring. I could hear it all the way in the bathroom...and it was LOUD! I could hear it well enough to know that the captioning didn't keep up with the game ;).
*We went to my mom's for Thanksgiving lunch and after lunch I went back to get a refill on my Coke. Then men were watching the football game, and as I poured the Coke I heard a "pshhhhhhhhhhh". I asked hubby, "What's that noise??" and he said, "I don't hear anything!" About that time it faded out, so I turned back to pour some more Coke, and the second I did it started again. I realized that I was hearing the fizz of my soft drink...over the sound of the men talking and the football game!
*When we went to the in-laws' for dinner, we were in line fixing plates and I heard my mother-in-law call my name. I turned and looked and she was grinning. It's a new thing to be able to just call me...I don't usually respond...and the whole family has gotten in the habit of flapping their hands to get my attention...a habit that it looks like I'm gonna have to be breaking them of soon ;).
*Ellie came and sat with me on the bed last night and was watching Disney Channel. She was about to ask me something, and I said, "Wait!" and turned my head so I wasn't looking at her. She figured out pretty quickly to talk slowly and loudly, but I heard every word when she said, "I just brushed my teeth, and I've been eating M&M's. Are my teeth dirty? Do I need to brush them again?" (talk about unpredictable...there's no way I could have guessed any part of that sentence!!)
*Claire and I were on the bed this morning and I asked her, "Is the phone ringing?" She waved her hand and said "No" ("Bummer," I thought to myself) and then I heard it again, and asked again, "IS THE PHONE RINGING?" This time, she said, "Oh! Yes!" and dashed off to get it. A big deal...I've been hearing the phone ring this week, but before that, I haven't heard it in nearly 18 months :). One of these days, I might just answer it ;)!
*Today hubby was outside banging and clanging and chopping leaves with the mower...and I could barely think for all the noise I was hearing up here in the bedroom ;). His work is LOUD!
*and the icing on the cake...tonight we were on our way to grab dinner, and were in the dark little car. I was driving, and hubby started talking, and I decided I'd just listen instead of turning on the light to try to lipread. We did that all the way to Nashville...about an hour...and I was able to understand at least 90% of what he said to me. I did have to listen carefully...and when he was talking to Katie in the backseat I didn't pay much attention and I didn't catch much. We went shopping after dinner and I heard several customers in the store talking to their kids, on their phones, etc. and was able to understand a lot of what they were saying when I concentrated. It's amazing how loudly people talk in stores!!
I've heard lots more sounds, and will hear more...but this was just a few (I know you're glad I'm done ;) ). I'll list more in the next day or so...I'm just so amazed at my newfound capabilities!! This hearing business is rather incredible!!!!

PILGRIMS AND PIONEERS

Feeling kind of nostalgic today, missing my family...so what I really need is an excellent video of a very special person, Rachel Chaikof, a pioneer cochlear implantee AND a designer extraordinaire of the Pediatric Cochlear Implant Circle COCHLEAR IMPLANT AWARENESS CAMPAIGN. I'll let Rachel do what she does best...speak for herself.



Entry taken from Rachel and Jessica's (See my blog from November 1st -Jessica)Blog
September 19th, 2007

"Just wait and see when your kids become 18 years old or finish high school. I was one of them. I grew up oral and I often was told that I am hard of hearing (which is not true) because I speak fairly well. Today I have considered myself as a Pride Deaf woman. I wish that I had learned ASL many years ago. I also wish I had made alot of Deaf/HH friends back then. I respect you that you've chosen your kids to learn to speak and many more. I am not surprised that you will regret this later on. Wait and see ....."

While my sister and I have been raised in the hearing world, our deafness will always be part of us, but it does not define who we are. Nearly 30 years after the revolution of the cochlear implant, the debate of using sign language is still endless. Deaf advocates are taking advantage of the cyberworld by using blogs to advocate that babies with cochlear implants and even normal hearing babies use sign language starting as newborns. They believe that deaf infants who start learning sign language as soon as possible will have better expressive language than children with cochlear implants who do not learn sign language. As a 20 year old adult, I firmly prove these deaf advocates wrong because I do not regret that I have not learned sign language. I feel that ASL is absolutely unnecessary to be part of my life as I am leading a rich life in which I hear and speak well. I graduated from high school with honors and am now a sophomore at a regular mainstream college.

Many people have been fooled into thinking that I am not deaf because my speech is clear and also because I hear well. This is to thanks to all the years that I worked in Auditory-Verbal therapy where my therapist and family taught me to listen and speak.

In my public middle school, which had a total communication program, I met a few students with cochlear implants and hearing aids, and they all signed and also spoke. Their speech was very unintelligible because they relied on sign language frequently. Most of them were also not mainstreamed and were in a self-contained classroom all day. If I relied on sign language like these students, my life would have been like theirs In that I would not have fully participated in the mainstream environment, and my speech would have been unclear and, thus, more difficult for people to understand. Also, my parents’ first language is English. Why should my parents have spent a great amount of time learning another language just to teach me for only a few years when there was an easier and valuable option of implanting me and teaching me their first language that they had a full grasp of? Also, my sister's language evaluation at age six showed her to have language that was 6 months to two years above age level.

Many deaf advocates told my parents that, when I became an adult, I would discard my CI processors, adapt to the deaf culture, and be angry at my parents. As a 20 year old adult, I am happily living in the hearing world with bilateral cochlear implants and would never discard my implants in the future. I am bilingual, but not in English and ASL, but rather I am fluent in both French and English. I listen to my iPod on a regular basis and attend movies in theaters with my normal hearing friends, fully enjoying the sounds of the movies.

My deafness will still be part of me as I have attended several cochlear implant conventions where I met other people with cochlear implants also raised with the Auditory-Verbal approach. We share our fortunate paths of being raised with this wonderful technology, the cochlear implant, by telling each other of our achievements that could not have happened without our cochlear implants and also share some small obstacles that we’ve had, such as not understanding people who mumble. At the conventions, we hung out in our hotel rooms or in the lobby and TALKED to each other until past midnight! These friends are my deaf community, but my main community is the entire world.


As the mother of a deaf child who wears a cochlear implant, I am constantly looking for role models. Rachel and Jessica are two exceptional young women with two strong inspirational voices and one helluva motivated and devoted mother!

C I AM A PARENT AND A TEACHER...

OOOOOOOOh, yesterday, Luca took me to Venturina for my birthday present: a massage and relaxing day at the thermal waters dayspa of Calidario. The massage was heavenly, the water cold, but it was soooooo relaxing. I'm in this relaxation mode that will last about another half an hour before my next lesson, so when I found this advertisement, I thought I'd post it.



The ad is for the Hear and Say Center of Australia.
The Hear and Say Centre is one of the leading Paediatric Auditory-Verbal and cochlear implant centres in the world, teaching children who are deaf or hearing impaired to listen and speak since 1992.

The Centre aims for its children to achieve speech and language in the normal range for their age by six years of age giving them the opportunity for a mainstream education, employment of choice and social integration with the hearing world.

The Centre is a charity based in Brisbane with regional centres on the Gold Coast, Sunshine Coast, Cairns and Dalby with an Outreach program for rural and remote children. It is a family based program recognizing the parent as the natural language teacher of the child.

I appreciate two aspects of what I've learned in the past five minutes about this center: first of all, I like that the ad has the children speaking and saying, "We are deaf," and secondly, I love that the Center recognizes the "parent as the natural language teacher of the child."

Sometimes, this great responsibility of becoming both teacher and parent can be overwhelming. Parents need to realize that teaching a deaf child to speak occurs over a prolonged period of time and that sometimes, it's okay to take a little break just to go to the gym.
The Pediatric Cochlear Implant Circle was founded by two women, one of whom is Australian. Naomi's "swings and roundabouts" post sums it all up rather eloquently :)...
These were her words to her group...
Hi all

To all you amazing wonderful moms and dads on this list - don't be soo hard on
yourselves! As someone once told me this is not a sprint it is a marathon...you need to pace yourselves, if you go too hard too early you will burn yourselves out.

This is even more true for those now diagnosed as tiny babies, for goodness sake
looking after a baby is tiring enough and now we are adding in working on
hearing/listening skills - no wonder you are feeling just a little worn out.

Yes it is very important to work on these skills for your little ones, you know
that...but you know if one day you are just soooo tired putting one foot in
front of the other is all you can do, then just do that....the world won't stop
turning and 10 years from now you are not going to be saying "if only on that
one day in November I focused more on x's listening skills, than I did on
myself"....at the end of the day, having one day off to just "be" isn't going to
make a big deal of difference in the scheme of things.

Keep a little notebook of really easy to understand things you are working on
like colours or "up/down" or whatever it is....then when other people come
around to visit - rope them in!! I mean that in the nicest possible way : - )
Most people want to understand and want to help, give them the chance, what is
that saying it takes a village to raise a child....I was truly blessed, our AVT
used to come to our house and my mom used to come over and sit and watch our
sessions so she always knew what we were working on! But you get what I mean
here right?

This journey has highs and lows all the way through, go crazy and celebrate the
highs but don't beat yourself up too much on the lows either. There are good and
not so good teachers whether your kids have a hearing loss or not and some
people "get it" and some never will. Remember they are the expert in that
classroom, the group dynamics and educational pedagogy. YOU are the expert when it comes to your child, you know them best! Grab that knowledge and work with the "professionals" as an equal, treat them with the respect that you expect them to treat you with, and don't let them intimidate you because you don't have letters after your name.It is all about swings and roundabouts, some days are good, some not so good. The road is a long one but those of us with older kids will tell you, the journey, the hard work, oh man oh man it is unbelievably worth it. I can't tell you how my heart feels to bursting when I watch my guy in action, one of the "gang", one of the successful kids in his school/with his friends.

Hang in there, and most of all don't be too hard on yourselves!!

Naomi

FOR THOSE CONSIDERING BILATERAL COCHLEAR IMPLANTS...

I have blog addiction, I'm becoming addicted to my own blog. I did not post yesterday because I had dinner for 16 at my house last night to celebrate my thoroughly lived 36 years and was too exhausted-in-a-good-way to write. Thank goodness the company was great and my hubbie got a cake(una meringata, the best) from GIANNINI, because I am a REALLY BAD cook. Although, the important thing was that there was plenty of MORELLINO DI SCANSANO and my American friend Rhonda made a mean batch of cocktails. She is the only one I know who manages to find cranberry juice in this country, I have yet to discover her secret. The kids were quaranteened upstairs and played videogames for like four hours, I'm such a bad mother, but the adults were left in peace to eat, drink and be goofy. A fun time was had by all...

Now to the Video du jour. I received this informative testimonial-type video on bilateral implants about five days ago. Bethany, who I don't know, gives an honest account of her experience with bilateral implants. More and more families are choosing to simultaneously bilaterally implant their babies with a profound hearing loss, while others who have only one implant are beginning to consider going for the second one. Jordan only has one and I think I've only recently managed to recover from the whole ordeal that began three years ago. It is not an easy decision to opt for the first implant, the second should be a no-brainer based on how well the first works, but I am just not ready to go through the mental anguish of a surgery again. Bethany explains her experience in a language that teenagers and parents considering bilateral implantation for their children will find helpful and...inspirational.
GO BETHANY!!!