Monday, March 31, 2008

Response to Mishka and Myself

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

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

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

The FDA is just playing catch up.

March 30, 2008 8:43 PM

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

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

Here are the news that was posted in 2004:

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

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

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

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

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

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

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

This was my point for posting...

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

Sunday, March 30, 2008

FDA Seeks to Fine Cochlear Implant Company

FDA Seeks $2.2 Mln Fine Against Advanced Bionics

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

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

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

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

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

A company spokesman was not immediately available for comment.

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

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

(Reporting by Julie Vorman; Editing by Brian Moss)

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

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

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

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

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

Here Comes the Sun

AAAAAAAAHHHHHH! There are currently seven kidlings running rampid around my house. You can't even imagine the day here today in Grosseto - BEAUTIFUL! I'm hungover and my head is pounding, live for my iPod. Last night was Rhonda's birthday and we karaokeeeeeddddd! I'm thinking of taking a show on the road *smile*. It was a pizza/karaoke combo thing with a lot of wine. I'm currently on my fourth round of antibiotics, still can't kick the bronchitis and staying home is just not an option, so the wine probably wasn't a good idea - but damn did we have a good time! All I can say is that "I Will Survive" is the BEST song to Karaoke and Rhonda rocked the house. She's such a Texan.

I must say that Jordan shook his groove thing, too, and made some friends. There was one moment when he looked at me like a person, I swear, like a person and not a mother. He said, "Gosh, you're tall!" Then, he asked me to dance and actually spun me around a couple of times. Look out, ladies, latin lover in training. Although, right now, he's outside with his battle material playing war with his friends.

And Sofia, she got her hair straightened yesterday and thought she was "all that - little miss thing" at dinner. She stole my lipgloss and hid it, I had to beg her to give it back to me. I am in BIG trouble. To give you an idea of what a little five year old witch she is, the other day, Jordan woke up and started complaining that he didn't want to go to school because he was tired, and he went on complaining for like twenty minutes. Suddenly, a little voice piped up from her bedroom, Sofia Madyson said, "I want to go to school, I love school." She instigates...constantly. Her latest expression is, "Mommy, (love that she calls me Mommy and not Mamma)you've ruined my life." She is 100% DRAMA. I love her name..."Sofia" means wisdom and we need a little of that around here, and "Madyson" was for the people lost in 9-11, I wanted a name that had a little New York City in it. I guess I got what I asked for:).

Before I go - I have to pack, still haven't started...I think I'm packing six pairs of shoes, there is something really wrong with that, I'm becoming my mom- I just need to share something with all of you. It's called "going to the wall." See, we went to have lunch at the International Festival, I had a grilled sausage sandwich with onions and sauerkraut and a big beer. We sat at a picnic table (it's like 70° and BEAUTIFUL here today)ran into friends and I kid you not, Bob Marley started playing on the radio. As the words, "This is an amazing moment!" left my mouth, they took out the Bob Marley cd and put in a Vasco Rossi cd. I could have cried, but I was really enjoying that sausage. Anyway, what is the MOST important part of a festival???


Well, not a one to be found, sooooo, we had to "go to the wall." Sofia and Jordan both started doing the pee-pee dance and screaming "gotta go". What's a mother to do in Grosseto with ALL shops closed and not a bathroom in sight? Yes, I took my children down the steps to an isolated place in the park against a wall with dogshit lining it (where the hell am I?) and told Jordan to take care of business. Sofia? I had to hold her legs and body up so she wouldn't get soaked, she is so heavy!!!! So, when she was finished, I tried to maneuver to get the kleenex to wipe her, felt her slipping and start screaming, I lost control of her and... dropped her. (rotfl)

Have a good one...and BTW: If it looks like a duck, walks like a duck and quacks like a duck...It's a duck *smile*

Friday, March 28, 2008

Wahoo...Starbuck's Here I Come!!!

I'm still in shock, but today, Grosseto was as close to "cool" as it will ever get. I went to the Corso to grab some pizza for Jordan and found an International Festival.

Where the hell did that come from? I swear I felt like I was at Artscape in Baltimore City for a brief moment (then I saw a woman throw her trash on the ground instead of the trashcan and I remembered where I was - I can't stand people who litter!) and suddenly this amazing calm settled upon me. There were wooden picnic tables, and there was actually smoke coming from tents with real, live festival food cooking. You just can't imagine what it's like to be limited to Italian food...pasta, pizza and pasta or pizza - every single meal over and over again. It's no wonder I have no problem eating bananas and yogurt every day, I'm used to monotany. Oh my God, the smells, hot dogs, knockwurst with peppers and onions, beer-baked pig, (rotfl)crepes, cheeses, chocolate, paella and kegs of beer- food from Austria, Germany, Holland, Spain, Italy, etc. Every now and then, I caught a whiff of a baseball stadium, or the Fells Point Festival. All I can say is thank God I'm going home on Tuesday, or I probably would have cried, instead I glowed.

Top Americanisms I miss(obviously aside from family and friends)...

10. Sunday matinees with real American popcorn and a box of Snowcaps or God - Raisinets - live for Raisinets.

9. American men, well-built, muscular, wearing J.Crew - There is just no eye candy 'round these parts...

8. Sushi bars, misou soup, All-U-Can-Eat Indian Buffets with REALLY SPICY DISHES and Chinese Food that doesn't taste like frozen fried dog

7. An ice-cold bottle of Sam Adams Lager that I can drink from the bottle, not from a glass - Europeans are such p***ies!

6. American radio stations that just play American music, a TV that speaks English and gossipy, trendy, trashy American magazines with half-naked Britney Spears on the cover

5. Oprah

4. A manicure that lasts thirty minutes with a massage instead of two hours without one.

3. Cheesy, obese, colorful, diverse, obnoxious, loud, not perfectly dressed, Americans who know how to respect a line and hold a door (I am living in the land of the THIN and BEAUTIFUL *vomit*...I feel so at home in the good, ole USofA)

2. Trees and squirrels

1. It's a Four-way TIE! Chuck-E-Cheese (for Jordan), TARGET (love Target), Chili's nachos with extra salsa, heavy on the GUAC! and STARBUCK'S!!!!!!!!! Hmm. which Frappuccino to choose!

Ok. So, I'm superficial...I did throw in a squirrel.

If you have a chance, check out my good friend Christina's Blog, (it's in Italian, but really nice) she just showed it to me and blew me away...she is one of those special people with special parents.

Thursday, March 27, 2008


I just put Sofia to sleep reading a book called, "La migliore del mondo è la mia Nonna" (My Grandma is the best in the World -yes, the mil gave it to her *smile*)and I'm in a very nostalgic mood, thinking about my own grandma. I kind of have one foot in and out of the door since I'll be leaving for Baltimore with Jordan in about four days. He's already begun the countdown, and I've started going out of my head preparing for the trip with a hundred other things to worry about before we actually get on the plane.

The most difficult part of moving to Grosseto eleven years ago was leaving my grandparents. Gram and Pop practically raised my sister and I during the nasty divorce years and were ALWAYS there for us. I looked forward to Friday nights because that was the night when Niki and I would sleep over Gram's house with the cousins, Jay and Andy. Yeah, it was penny poker night and the killer line-up on TV was Dukes of Hazzard (lived for Bo Duke-the only blonde I've ever loved),
Love Boat
and after we got tucked in and had lights out, of course we all snuck back into the living room to see Fantasy Island.
Gram and Pop were always asleep and snoring by 10:15 pm, so we got in a full 45 minutes of adult TV and hide-and-go-seek in the dark.

Our all-time favorite memory of the Friday night sleepovers was the night Gram insisted that she didn't snore. Not only did she snore - she dragon-snored, and she and Pop would not only bicker during dinner, they carried the conversation into their dreams and would have snoring matches...Gram always won. So, to convince her that she did in fact, snore, we taped her. Andy, Jay, Niki and I brought the tape-recorder into their bedroom, I almost knocked Pop's dentures off the night-table, you can't even imagine the scene, must have been about twenty-eight years ago, I remember it like it was yesterday. We laughed so much, I don't know how they didn't wake up, although she snored so loud, I still can't understand how she didn't wake herself up. The next morning definitely required Depends and I don't think they had those back then, because we were all on the floor. She couldn't believe it was her snoring, and Pop was so excited after thirty years of living with dragon-lady that he now had proof. Amazing moment.

I still see Pop in his Hanes white boxers and big old belly hanging out eating a tub of Pantry Pride Cookies-n-Cream ice-cream with a spoon. He knocked back gallon tubs at a time. My Gram was the all-time worst cook - it's hereditary- but she could make some mean soup...every variety, chicken noodle soup, chicken corn, pea and my all-time favorite (I am from Maryland) crab soup.
Pop was the tunafish champ of the world, he put just about everything in his tuna - tomatoes, relish, cucumbers and it was always THE BEST!

Growing up, my grandma paid for my ballet, jazz and tap lessons.
She took me clothes shopping and played with my hair. Pop helped me get my first job at the Bagel Shoppe in the Owings Mills Mall at age 16 so that I could pay for car insurance. Every single Saturday morning he would come to visit and slip me a twenty dollar bill, every single Saturday. I would say, "No, Pop, it's okay, I work, I don't need any money." And, he would insist. After my sister totalled my car when I was in college, he gave me his so that I could go to work to pay for insurance and beer money. (*smile*) I used to have to stop on the beltway to add oil, it was a real piece, but it got me through college and every single time I talked to him on the phone he would ask, "Hey, Jo, didja check the oil?"
I would say, "Yeah, Pop." I really miss him.

The worst thing I did before leaving Baltimore was kill my grandparents before they died.

My Pop died three years ago, the May ninth (my mom's birthday)after Jordan got his cochlear implant. All he ever wanted was to be able to communicate with Jordan, who could never speak English. It's amazing how universal the language of love can be and how it can break the sound barrier. Pop didn't let language issues stop him from communicating with Jordan and on our last trip together my 82 year old grandfather jumped into the swimming pool with his clothes on just to swim with Jordan and make him laugh...

And Gram? I was reading the Grandma book to Sofia and came across this:
Dear Gram, I love you for your hugs and kisses. You are sweet and dear. I love you, more than the world. I like when you snore during the night. I like that you are you.
The only problem is that my Gram is no longer my Gram because she has dementia and is living in a nursing home. There is no pain greater than living here and not being able to take care of my Gram who took care of me my entire life. She is living in a shitty environment with strangers taking care of her or neglecting her, depending on their moods. Emptiness. My mom is doing the best she can day in and out to visit her and make her life more comfortable, but she doesn't even recognize my mom who sees her every single day. Who knows if she'll recognize me after nine months that I haven't seen her? Will I even recognize her? Jordan hates the nursing home.

I know that Pop is watching over us, and I know that he is not happy about Gram.

As beautiful as it is to go home, it's just as painful. We all make choices during our lives, some easier than others, but we must always live with the consequences.

Wednesday, March 26, 2008

1st Legally Deaf Player Signed to NBA Contract

Ok. What I wanted to blog will have to wait til tomorrow because it requires photos and Blogger is not collaborating with me. So, I've stolen an article from Josh Swiller's Blog. (We all know I have a thing for him)Check it out!

Cavs hoping to get big help
With Ilgauskas, Wallace ailing, legally deaf player Allred signs for 10 days

By Brian Windhorst
Beacon Journal sportswriter

Published on Friday, Mar 14, 2008

WASHINGTON: Lance Allred hopes it isn't his legacy, but he is now a part of history.

The Cavaliers signed the 6-foot-11 center to a 10-day contract Thursday as he was called up from the NBA Development League's Idaho Stampede. He will provide depth in the frontcourt with both Zydrunas Ilgauskas and Ben Wallace fighting back problems. But there is more to his story.

Allred is the first legally deaf player to play in the NBA. He's had about 75 percent hearing loss since birth but uses implants that allow him to be functional.

''It is an accomplishment. It's meaningful that I've made it to this stage,'' Allred said. ''I want to be known for more than that, but it is an honor.''

Allred played in college at Utah and then Weber State, where he was third in the NCAA in rebounding as a senior in 2005. He played a year in Europe and has played the last two seasons in the D-League, this year averaging 16.2 points and 10 rebounds to be named to the league's All-Star Game. He also played in summer league with the Boston Celtics last year.

''I am able to hear most things. Every now and then I will miss hearing a teammate, especially if he is behind me. I've been wiped out on some screens in my career,'' Allred said. ''But that means I have to pay extra attention and be very visually aware and sometimes that actually helps me see things before they happen.''
The Cavs allowed the 10-day contracts of Kaniel Dickens and Billy Thomas to expire. If the team wanted to keep either, they would've had to sign him for the rest of the season, under league rules.

In the locker room

• There's another magazine cover ahead for LeBron James. He's on the cover of next month's Vogue, along with supermodel Gisele Bundchen. James is one of just three men who have appeared on the cover during the magazine's 116-year history. The others were actors Richard Gere and George Clooney. He said it appealed to him because of his sense of fashion. James has been on the cover of Men's Health, Black Enterprise and Fortune over the last several months. He is also on the cover of ESPN the Magazine's 10th anniversary issue now on newsstands.

• James said Thursday he was still suffering some lingering pain and stiffness after a knee-to-knee collision with the New Jersey Nets' Vince Carter on Wednesday night. It was not enough to keep him out of the lineup.

• Delonte West is from suburban Washington, and he wanted to make sure his friends and family got to see him with his new team. He rented out a suite at the Verizon Center for his guests.


CLEVELAND, OH - March 25th, 2008 - The Cleveland Cavaliers have signed center Lance Allred to a second 10-day contract, Cavaliers General Manager Danny Ferry announced today. Allred has played in two games for Cleveland. He signed his first 10-day contract on March 13th.

Tuesday, March 25, 2008

Intelligent AND Sexy Women

Hiya. If you are a man and think you're gonna read today's post...go away. It will scare you. This one's for the women.

Hey girlz. If you've been following this blog over the past couple of days, you are aware that I have been living some shit the past ten years. Since RALLY CAPS has been published, I have been experiencing a sort of re-awakening that has led me straight into the land of WOMAN.

As I've also mentioned in other blogs, I have a very good friend named Lorenzo who gives me an education about the male perspective...the older man perspective, actually, which I find quite interesting. He says that men (Italian men) generally categorize women in two ways: "intelligent" and "sexy" (actually he used the Italian word "trombabile" (f-able), but for the sake of maintaining my "good girl" image - I will use "sexy"). From what I understand, "intelligent" is the kiss of death for a woman, kind of like when we say a guy is "nice" in English.

"So," I asked him, "What happens when a woman is intelligent and sexy?" He looked perplexed and said, "Lethal combination." (To deactivate music click on the thingy in the upper-righthand column)
Not many men are man enough to handle a sexy and intelligent woman. I have a couple of single, sexy and intelligent girlfriends who constantly complain that in Grosseto men with balls do not exist. So, ladies, when you find that man, hold onto him.

While sitting here working on the fourth revision of the Italian translation - it's driving me crazy, there are still so many errors- my mind wandered, for a change. All of my American friends from Baltimore are sexy and intelligent. They all have that attitude that exudes sex appeal, because they are intelligent enough to know what it is about their bodies that makes them sexy. If they have a great rack, they wear tastefully low-cut, tight, spandexy tops. If they have amazing legs, they wear just the right-length skirts. If they have a beautiful face and beautiful eyes, they dress in a unique style and color their hair so that it brings out that baby blue.

I know that my blog reaches you when you turn on that computer to start working, that's how the time difference between Italy and the States contributes to making this blog effective. I intentionally try to spice up your mornings and start your days with a smile because work can be SOOOOOOOOO boring. And today will be no exception.

Ladies, it's time to talk "sex appeal." And in order to do so, we need to work from the inside out...which means RENEW THAT BRA AND PANTIES DRAWER.
Take a moment to ponder your undergarment selection of the day. Is it made of cotton or something sensually smooth and silky? Is there a touch of lace or something flirty going on there, or is it white, cotton grandma Gertie stuff? How sexy can you possibly feel if you are wearing geriatric material down there? And, let me tell you something else, just because you may have a little extra junk in that trunk DOES NOT mean that you can't go for that thong and avoid those nasty pantylines. "Sexy" starts on the inside, so schedule a trip to Victoria's Secret on your lunchbreak and shock the shit out of your husband.

Strong women are scary women and strong, sexy women are even scarier, so I suggest baby pink or virginal white instead of red - subtle is so much sexier than aggressive.
Once you spice up those undergarments, you'll notice a little bounce in your step and perhaps a few more interested stares coming your way.
See, when we are so stuck in our routines, marriages, child-raising lifestyles, we close ourselves off from the rest of the world and don't even notice those staring eyes anymore. This closure is normal and good for a married woman, it avoids potential problems, but it's dangerous for a marriage, because you settle into that routine
and that spice disappears even from your marriage.

When those stares start coming your way, you'll want to smile back. It's much easier to smile when you've got some juicy gloss on your lips, so...Head Straight for the MAC Counter of Nordstrom's or the makeup department of your choice and go for some transparent lip gloss
and hell, go for the kind with sparklies, because with your new sexy panties, you can add a little bling to those lips.

Bring flirty back into your life, because normal is so boring. Get your nails done, pamper yourself and look people directly in the eyes when they appreciate your groove thing. Most importantly, smile...people in this country really need to learn to smile.

And one more thing, one VERY important thing: A "Sexy" woman (the f-able type) may never be "intelligent," BUT an "Intelligent" woman can ALWAYS be "sexy." (Video with captions:Barack Obama - Meet Michelle...The embed code wouldn't work, check it out. Thanks to Paula for posting about Project ReadOn)

...think it's the fm red hair???

Monday, March 24, 2008

Response to Barb DiGi

I think I'm on the verge of a nervous breakdown. *smile*
*letting fm red hair down*
Okay, Barb. I really appreciate your questions and that you were so intrigued by yesterday's post that you felt the need to write a response on your blog. I have already answered many of these questions in other posts, but I have absolutely no problem doing it again. Each time I write about our experience, I learn something new and as I've already said, blogging, above all else is a cathartic experience for me. I'm kind of super-sensitive today, also because my friend Francesca just left a power comment and reminded me of our elementary school decision amongst other things.

I strongly agree with your first paragraph...
When reading Jodi's blog about her struggle raising her eight-year-old Deaf son, I had to ask her my questions to her question below. The purpose of my blog is not to make any judgment or criticism but to gain a better understanding how a system can be improved for hearing parents of Deaf children to receive better support....and if dialogue serves as a mechanism for bringing about effective change, I am happy to be a part of it.

Barb wrote: "My question is, why did Jodi struggle so much when raising her son for eight years? Did she really have a hard time finding Deaf people in Italy to give her support to learn sign language? Was it really that bad?"

Barb, our experience began eleven years ago. The audiologist in Florence told me my son was deaf in Italian and I didn't speak a word of Italian. Frustrating? You have no idea...well, maybe you do. They immediately discarded learning LIS - Why teach your son sign language when he can learn to speak with hearing aids?, they fitted Jordan for earmolds and ordered his hearing aids. A phonecall was made to a speech therapist in Grosseto and one week later we were in our first speech therapy lesson with Jordan - without aids.

I don't remember how this happened, but I'm sure I was the one curious about LIS and requested that my husband and mother-in-law accompany me to a meeting at the local chapter. I'm actually getting upset here. I felt foreign twice in that meeting and I so would have liked to have learned more but I did not have the energy. I didn't understand Italian and the idea of having to learn LIS on top of Italian was twice the energy that I was trying to recuperate from not being able to speak English with my son.

My husband and my mil did not want to learn LIS and were frankly terrified and overwhelmed by Jordan's deafness, especially my mil, she acted like someone had died. Thank God I did not understand Italian enough at that point to really realize how upset she was by his deafness. I basically tuned out her desperate faces and got REALLY pissed off for my kid who just couldn't hear...that's it.

His deafness did not overwhelm me, I was more terrified by the idea of having to speak to my son in Italian. But, I was VERY determined to do the best I could to give him language.

I concentrated on learning and teaching him Italian.

The rest of the family spoiled Jordan and were scared of him, I think...sorry for him. So, it was me against the rest of the family for so, so long. I was the one who disciplined, I was the one who educated, I was the one who listened to them tell me that children in Italy start potty training at age 12 months...that is why it took two years to potty train, we started too early. I was the one who couldn't speak Italian. (really frustrating re-living all of this)

...more questions: Why was it that your son was not able to express himself adequately? Was it because you and he didn't have access to sign language? Was the Deaf community in Italy that apathetic that they didn't give you support in learning LIS? Forgive me if you had already answered these questions in your blog so please help me understand why he wasn't able to express himself at that time.

Barb, this is exhausting...LIS was not a part of our deaf experience because Italian was the main focus. He wore hearing aids from the age of twelve months. He could hear well with the hearing aids 50 decibels, began speech-reading and was an extremely alert and intelligent baby. He could understand the message but had great difficulty expressing himself...probably because I was his teacher and I had difficulty expressing myself. Our experiences were so similar as were our frustrations, how ironic the idea of leading parallel lives with a twelve month old baby. I swear I understood his every need without him even speaking, but the others around him could not understand and meet his needs, so he became easily frustrated.

This is why I say LIS would have surely made our experience easier, we needed some type of visual bridge at that time - both of us- but I did not realize this at the time...and I hope I have been clear as to why the idea of incorporating yet another language was impossible for me at that time.

For Jordan to learn one new vocabulary word took saying the word literally hundreds of times. We bought him new cars, toys, anything that interested him because when he was stimulated, he learned a new word in about ten times. You can't even imagine how many toys we had in our home. He did not do well with the traditional speech therapy method of sticking him in a highchair to have him repeat sounds and move objects. He learned better while moving, playing, interacting and fortunately he had two teachers working with him in addition to me at home. He learned to read at age four but didn't comprehend what he was reading. So frustrating. His language slowly improved through the years, especially when he went to pre-school and was exposed to better Italian five hours a day, as opposed to my Italian. He had an excellent support teacher in pre-school who actually protected him within the mainstream classroom setting, taking him out of the class whenever she saw he was tired or frustrated.

There is no Deaf community where I live. I have maybe run into three Deaf people who do not wear hearing aids or a cochlear implant in my eleven years here. What kind of life would my son have lead had we chosen to strictly teach him LIS? LIS would have been useful as a bridge, and that is it. With consistent speech therapy, teachers, classmates and my improving Italian, by third grade he had enough vocabulary to adequately express himself but was missing out on the conversations of his peers...and I could see him suffering.

We chose the cochlear implant...the rest is as you know it. And yes, it did save our lives, most of all, Jordan's. He needed the extra hearing it provides to be able to successfully interact with his peers.

Barb, all of your questions involve Deaf parents here, Deaf community there, etc. That is not my reality here in Grosseto, there is no sense of community that I am aware of, just a couple of very nice people who drop by my house unannounced at very inconvenient hours - which is fine, but then I can't really talk. All of our friends, Jordan's friends are hearing except for one boy, Matteo, a year younger and another friend of ours Lorenzo who is adorable and twenty-two. They both wear hearing aids. Jordan loves playing with Matteo.

I don't know your reality, but it is so far from mine. I made my decisions based on my reality and I know you respect that. Barb, I wouldn't have done anything differently because I couldn't have at that time. There were no yahoo support groups, literature on LIS provided, blogs, etc. And even if there had been, my reality was an Italy that I didn't understand. Maybe if my husband had been a little more with it, he could have made more suggestions, but I took control of the situation and he followed offering his support. We all do the best that we can and try to make informed decisions.

Frustrated and stressed??? Barb, are you Deaf? Can you communicate in the hearing world? If you can't than you can understand my frustration and stress because it is the same exact concept. Try going to a foreign country, finding your kid in an emergency situation where you have to make life-altering decisions and can't understand a freaking thing they're saying. So, so frustrating. Do you know what it feels like when people look at you like you're an idiot because you can't speak their language so they automatically assume you are stupid? How about when Doctors talk to your mil and not you about your own kid...they looked right through me as if I was no one. I was the MOTHER.

We got through it all. And here I am now...talking about all of it. I would never say the cochlear implant is for everyone, I will say that it works damn well, much better than hearing aids. If a family decides they want their child with a profound hearing loss to function in mainstream society and are prepared to follow that child with auditory-verbal therapy, hearing aids are no longer the appropriate choice - the cochlear implant is, because there is just no comparison based on my experience. The CI saved "our lives" because "our lives" revolve around my son's life and a happy, affectionate Jordan is a happy family.

BTW - If we were neighbors I wouldn't have such a helluva hard time finding someone to teach me ASL *smile*

I have to go now, my five year old daughter is pregnant with a blue balloon and ready to burst:)...

Sunday, March 23, 2008

Wanna See My Strong Character? Bring it ON!

I just got home after the usual 24 hour marathon Easter event with my husband's family to find that I have just been attacked on my own humble, giving, loving, awareness-provoking blog.

*rolling up sleeves*

Oh, where to begin.
With Mafalda:
i do perfectly agree with you for the puke and vomit part.
i was just wondering:
1) did you ever notice that ASL is a language and you cannot learn a language through a dictionary?
2)did you ever get to know that in italy deaf people sign LIS and not ASL?
3)did you ever think that maybe a russian o bielorussian might sign his/her own sign language which is probably neither ASL nor LIS? (any way there are several km between bielorussia and russia, they are two different countries with different cultures, deaf or hearing)
4)why is the fact that that deaf girl was blonde sounds so important to you? a brown haired chap would have astonished you less?
5)is your conscience really allright with you giving her 10€? i saw another american doing this in the north of argentina, interpreting that tacit request from a native girl that wanted to exchange addresses to become penpals.
i have many more questions also about your feeling of identity, which concerns you long before your child's deaf identity, but i won't go further, i already asked you much and i wonder if you are asking yourself things about yourself sometimes, doing this before acting would be better.
and, last but not least, i'm glad to inform you that nobody is forcing you not to go back with all your family.
deafness itself is a deficit, it is not a desease, illness or sickness.
it becomes a handicap depen to the USA or going on living in this very quaint but insane country called italy.

March 23, 2008 7:40 AM

Mafalda...Thank you for taking the time to post your heartfelt comment. To answer your questions:
1 and 2. Due to the fact that I have no access to a sign language course, despite having tried to find one by contacting the local ENS chapter, I have begun browsing ASL online dictionaries to learn a few signs and just to have an idea of what ASL is like. Obviously, ASL will not help me here in Italy and I am WELL AWARE that LIS is what is used here. People from have generously written me off blog to try to put me in contact with a person who could teach Jordan and me LIS, but this person did not respond to my email.

3. Yes, you are correct, she was from Bielorussia, but I said Russia as a generalization, because I am geographically ignorant and it was just easier. I am aware that sign language is not international and I never said she understood what I signed, I just said I made the attempt.

4. Was the fact that she was blonde important to you? I never said it was important to me, the woman was blonde and I was describing her and the event. I'm not so shallow, nor was I astonished, it is not the first time it has occurred.

5. My conscience was divided. The last time this happened, I didn't give the guy anything because seeing a deaf person peddle pissed me off. Not only that, but I felt awkward even posting the fact that I gave her money, because it really isn't anyone's business what I do. However, since I decided to blog the event, I blogged it down to every last detail. One of my MAJOR faults is honesty and wearing my heart on my sleeve. However, if I perform an action, I stand by it, that's called character. I gave her the 10 euro because I know about the trafficking situation, now, and THAT pissed me off more than the fact that she was a deaf peddler...who happened to be blonde.

In regard to the rest, you can ask me any questions you'd like about my identity. After all that I have been through in the past twelve years, I know myself - strengths and weaknesses VERY WELL. I ALWAYS act with my heart before my head, but my heart is very intelligent...not always right, but open and giving.

This statement is extremely naive:
i'm glad to inform you that nobody is forcing you not to go back with all your family. deafness itself is a deficit, it is not a desease, illness or sickness.
it becomes a handicap depen to the USA or going on living in this very quaint but insane country called italy.

I am trapped in Italy, because Jordan needs to be here at this point in his life. We all make choices in life and I chose to come here eleven years ago thinking that it would be the opportunity of a lifetime to live another culture. Two months later, I was told that my son was deaf. AT THAT POINT I could have chosen to return to the USA, but I chose what was best for our family situation at that time...just as I will ALWAYS choose what is best for my children. Life is not so black and white, you can't just pick up and go when you have kids, especially one who is deaf and speaks Italian...not English.
I find it strange that you consider deafness a DEFICIT? Could you please clarify that term, I have never heard it used on Thank you, Jodi

And now for the ANONYMOUS commenter who called me a selfish bitch, child abuser:

1.better be a peddler than an abuser (who forces babies to get cochlear implants). that's my opinion.

wanna talk about the strength of character??????????????
That bitch forcefully cochlear implanted her son without consulting with him. THAT makes her an abuser. who has a better character?

3. What i'm trying to say is that jodi is rubbing our faces with ci's crap. she can talk about so called "ci" on agbell's site instead of posting it on here. We, deaf, dont give a jack, so dont waste time bragging that your son can HEAR on D-U-H!

First of all, the only reason I am responding to this ANONYMOUS commenter is because other commenters felt the need to defend me, which truly touched me. Apparently, the comments made pissed off the people who read my blog, so I will address them, despite the fact that I generally do not reply to ANONYMOUS commenters.

My strength of character does not come from the fact that I allowed a surgeon to perform cochlear implant surgery on my son, who by the way, was eight years old at the time. I assumed all responsibilities for CHOOSING the surgery as well as the potential consequences so that my son would NOT HAVE TO when he was older.

I spent the first eight years of his life sweating through four hours a week of speech therapy, struggling to learn a language that was not my own every single minute of every day, trusting my son with doctors, speech therapists, surgeons, teachers, other children and other children's parents during a time when he was unable to express himself adequately. Teaching him to potty train was a two year process and pre-school was hell, I had to leave him screaming at the door and call the teacher every twenty minutes until I was sure he was okay.

I had no rest or stress-release for the first four years of his schooling and studied diligently with him three hours every afternoon of elementary school. I couldn't work or have a social life for eight years, because my world revolved around my son and making sure he had access to a language that WAS NOT MY OWN. Did I care? No, I just wanted him to find himself and be happy.

To make sure he was happy and successful, we enrolled him in swimming lessons where he found lessons to teach him how to be part of a team and socialization lessons to free his mind and allow him to express rhythm that is an innate part of who he is.

Because hearing aids did not give him what he needed to bridge the language hump in order to finally express himself!


My blog is here to educate, share and promote awareness. After ten years of losing myself and almost losing my son - yes, LIS would have been useful as a bridge- we are making a comeback.

As DIVIDED said, "She talks about life in general and being a WOMAN."

*I feel like a woman after so many years of struggling just to make it to bedtime.*

As KW said, "Jodi is doing the best she can."

*Yes, I am...and I am having fun, finally, after so many years of shit*

Naomi said,
Anonymous what exactly are you trying to achieve with your comments here? There are many children being implanted today not just Jodi's son. Many of these kids are the next generation of the deaf community. How welcoming is it to these children if you choose to treat their parents in the way you are treating Jodi here in your comments on her blog?

The COCHLEAR IMPLANT together with the help of doctors, therapists, teachers and hours of hard work brought my son from a situation of suffering, temper tantrums, apathy and restlessness to the affectionate, passionate, risk-taking, generous person he is today. (He's still a pain in the ass, but he's growing)

*So yes, I will continue to shove it down your throat if you insist on reading my blog*

And yes...this experience has made me VERY strong, so if you have any other insults or questions...BRING IT ON!

(Geeze, and to think I was planning on blogging something light and easy for Easter!)

Friday, March 21, 2008

RALLY CAPS Wins Award *smile*

Hmmm. Yesterday, we went to our favorite pediatrician Dr. Lenzi, who as I've already said is hot (actually, I'm thinking of changing to a really obese lesbian Dr.), because we are the house of affliction. We were so good that we all got stickers and are currently chilling in the house with antibiotic cocktails. How much fun is it to try to shove an antibiotic down the throat of a screaming five year old princess in a violet flapper costume?
Thursday is my favorite day, because it's my lightest day. Yesterday, there was no school for Easter holiday, so it was nails and hair day. Dramatic event. I went to get my hair blown out at my favorite hairstylist, you know the one you go to because you TRUST him...well, the girl working there did my color shampoo - the one that is supposed to hold me over until next Saturday when I go for the highlights and cache, pre-New York City wedding - and when I got in front of the mirror...I was fuschia.
Swear, not kidding, hot pink hair. Yes, for a fleeting moment, I did think of Paotie (Happy Birthday, btw!)
*just kidding*
then, I screamed. Gabriele, my hairstylist and I were on the floor, kind of - I mean, I have no problem laughing at myself, but hot pink was totally unacceptable. He tried twice to cover it up and wash it out...unsuccessfully. Finally, he threw on a cache by the name of...PASSIONFRUIT. So now, my hair is flaming red, aggressive and traffic-stopping - literally, I look like a red traffic light. Unbelievable. The good news is that it should wash out in about seven days, just in time for my highlights, because PASSIONFRUIT clashes with that little purple dress.

*Nope, never a dull moment here in Tuscany*

The exciting news of the day is that RALLY CAPS won an award! The “Reader Views Reviewers Choice Award, 2008.” This was the review written by a ten year old named Brianna, and she recommended that RALLY CAPS be included in the contest. Gotta love that!

Rally Caps
Stephen J. Cutler and Jodi Cutler Del Dottore
PublishAmerica (2007)
ISBN 9781424173815
Reviewed by Brianne Plach (age 10) for Reader Views (1/08)

Do you love one sport more than any of the others? Jordan loves baseball and he thinks he is pretty good at it. He wants to make it onto the traveling team. Due to a tragic accident, he is unable to make it. Just when he thinks that his life will never be the same, he realizes his life is not the same, but could something good come out of bad?

Jordan ends up meeting another boy who has to live a hard life. But the other boy doesn't seem to make that big of a deal out of his disability. The boy has to wear a hearing aid! But even with a hearing aid and facing incredible odds, he still gets to play baseball. Never say the dream of playing baseball is impossible. With persistence, inspiration from unlikely places and determination, no mountain is too high to climb.

“Rally Caps” is a great book for baseball fans, both boys and girls. “Rally Caps” is an inspirational story for kids. I particularly liked this book because I too play softball. One of the other girls on my team last year had hearing aids in both of her ears. I was inspired by her and her determination to be a success. I couldn't help think about her when reading about Jordan. Don't let any thing keep you from playing your favorite sport. Play Ball!

Ahhhhhhhhhh! Vacation!!! I desperately need a little R and R, also because my husband is out of control since Siena and actually, he digs the red hair *smile*

Wednesday, March 19, 2008

Sumo-Style Commenters

I decided to allow all comments without moderating them beforehand...interesting experience.

*Things that make me go, hmmmmm.*

Anonymous said, "K.L. if you don't want to learn ASL nor social with deaf then you are hearing. Get off the deafread blog, get lost."

K.L. replied,
Nice hiding there.
I'm not on DeafRead, I'm on Jodi's blog. It just happens to be connected to DeafRead.
Cochlear implants are now part of the deaf community. Inescapable. You might want to learn about how they work rather than just diss the families that choose them.

Comment by anon — March 17, 2008 @ 3:38 pm
Jean Boutcher: quit being an ass, ok?
(really ugly:()

White Ghost added:
Hey, need a break and take a flirty visit at Seek Geo's blog, "Seek Alex" -- plezzzeeee visit his blog at DR's extra and vote to move his blog into the front!
Seek Alex is a damn cute! He's really Legola from "The Lord of the Rings" movie!
Oh my....I'm flirting....

*Things that make me reflect...*
Anonymous said...
Are you sure that all parents know what's best for their children?

I have a student in my classroom that is 13 years old, had a CI since she was 2, and still is not speaking or able to understand anything other than her name. She is not using ASL or any other language or code, visual or auditory. Yet, the mother refuses to use any other method than oralism. Can you honestly tell me that this mother is doing what is best for her child?

Or take the 12 year old girl who is using ASL beautifully, uses hearing aids for environmental sounds, and is generally very happy and content with herself. Her father is trying to get her a CI. Is this really the best option at this time?

Or take the 11 year old boy who is deaf, has autism, and severe behavior issues. Anytime he misbehaves, his father beats him with a belt. Is he really doing what is best for his child?

I'm sorry, but I'm sick of parents claiming that they know what's best for their own children when they don't. It is in these situations of child neglect and abuse that we tend to want to take a step forward and say hey... this isn't necessarily the best option. If you saw your neighbor beating up their child, wouldn't you intervene? I would certainly hope so. It takes a village to raise a child. If you aren't raising them right, I sure will step in and say so.

March 18, 2008 3:22 PM

Power comment by Val:
I refuse to let others pass judgement on parents for trying to be parents.

Yes, there are some terrible parents. I have sent parents to jail for sexual abuse. I attended three funerals in the last year for parents who "forgot" to give their children medicine for asthma or seizures. I watched a parent take off his belt and beat his child in my classroom. But I also cried with a parent who buried her son after he died of a heart attack at Disney World. I helped a parent find affordable housing and a job to get out of a relationship. I cried when parents came home from Iraq and hugged their children for the first time in 15 months. I celebrated birthdays and holidays with families. I excited children to learn. I watched fantastic parents raise great children. These parents are not too proud to ask for help and they are not too proud to cry with you and celebrate as well.

Maybe I need to not be so focused on Deaf Community. Maybe I need to remember I want to be involve in the Human Community. I want positive, great people to be around. Join or stay within your own community. Thank you Jodi for your words. You always make me think and go hmmmmm..

and last but not least...

*Things that make me smile*
Yesterday, Jordan discovered cologne. My friend Christina gave Jordan a Sergio Tacchini gift bag of shower gel, cologne and deodorant for Christmas that I had put away never to be found again until the other day. He began experimenting and after spraying, dousing and drowning himself in the cologne (Note: My house will never smell the same no matter how long I keep the windows open) he declared himself..."Manly."
This AXE commercial definitely did not help the situation:(To deactivate blog music click on the radio-like lookin' thing located in the upper right-hand column)

When he came home from school today, he declared that three girls had checked him out!

Yeah. That's my boy!

Tuesday, March 18, 2008

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

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!

Yes...Hurricane Rachel is blowing away with her candid and confident voice.

Monday, March 17, 2008

How the Journey in Deafness Touches Others...

Happy St. Patrick's Day!! I think...not many Irish around here, and it's pretty rare that I even remember a holiday, but I'm a few months away from Dublin, so I'm getting in the groove. So many funny things have happened in the past few days. First of all, dinner in Siena was an emotional experience. Hysterical because we were sitting across from "a couple"- American university students- to give you an idea...Lucy Liu and Skip from Family Ties - one of the strangest couples I've ever seen. Every now and then, he caressed her face, he just wasn't doing it for me. When they ordered dessert, they ordered chocolate cake, coffee mousse and...two cappuccinos - THAT is SO American! Cappuccino is strictly for breakfast, not to be ordered with dessert- Italian etiquette 101.

Speaking of dessert, I ordered the chocolate cake and Luca ordered the coffee mousse...dogfood (no offense to the commenter), the mousse looked like tuna patè. You have to understand, we were dining in a gourmet, 5 star restaurant that we used to go to years and years - 10 to be exact- ago, and Luca's dessert sucked. I told the waitress/owner who actually remembered us from 10 years ago. I can't believe I said this...she came over to the table and asked us how dessert was, I looked at her (must have been the bottle of Chianti talking) and said, "This dessert tastes like shit." Luca shot me a look. She started laughing and brought another chocolate cake. She charged us for three desserts anyway, welcome to Italy. We so did not care. That chocolate cake was beyond. The whole atmosphere was beyond and the strangest thing was that the opera was playing in the background the entire romantic dinner except for one different song. I swear "We are the World" started playing in the background, and I haven't heard that song since 1989 when I met Luca as part of an Italian exchange program. So, of course I started bawling and Lucy Liu and Skip shot me a look. My poor can dress me up, but...

Sunday morning we hit the outlets and there is nothing sexier than trying on clothes with your husband sitting in the dressing room with you...unless you happen upon the Lindt Chocolate store and discover the "Varesina."
You have NEVER tasted anything in the form of coffee until you try this concoction- Lindt hot chocolate, espresso, steamed milk served with a dark chocolate spoon- Oh MY GOSH! After the first, we returned for a second and it was just as good as the first...seems to be the story of my life, lately.

BTW, I have a new cellphone - PINK!!! I showed Rhonda and she almost threw up, I love it!

Okay, now here's the point of today's post. One of the blogs that I avidly read is Christina's journey with Christian and she posted a beautiful blog a couple of days ago. She had her first "guest blogger," her best friend write a little about her perspective on what Christina's family has been experiencing. Friends may not realize the important role they play in all of this, and we do not always realize how our experiences touch others. Enjoy!

I can't reiterate enough just how important a good support system is for families of D/HOH children. I know for my family, especially during the early days of Christian's diagnosis, that our strong, loyal, and close-knit group of family and friends in our support system is what got us through. They held our hands during the uncertainty, prayed for us during the myriad of tests, and listened to us cry over and over again.

Just as Chuck and I are working to understand Christian's hearing loss, our friends and family are as well. They have amazed us with their willingness to learn how to effectively communicate with our son.

I'm proud to include a guest post from one of my closest and dearest friends. She has been on the front-lines of our support team, and I asked her to write about her experience this past year.

Tina was my first friend to have a baby so needless to say, for me Christian was a highly anticipated, very important, special little guy. Christian was only a few months old when I took the summer off from work to study. I was so fortunate that summer as I got to spend a great deal of time with one of my closest friends and sweet Christian. At that time, Christian's diagnosis was unclear and Tina and Chuck were struggling with their own feelings and how they were going to handle Christian's different abilities. As a part of the inner-circle I didn't really know what to do other than to be there for my friends and their sweet boy. Once it was clear that Christian is deaf, Tina and Chuck faced that challenge head-on. I was so amazed and inspired by the strength and courage that my former drinking buddies had as wonderful parents!

As I had never really known anyone who was deaf, I was initially afraid how I would handle this. I mean, Tina had developed this whole support team through her blogging. These are people who actually get what she's talking about. Maybe my words of advice won't matter to her anymore. Would I say something that was offensive and ignorant? Would I use the wrong sign? Would I even learn how to sign?

But then I realized, here's the thing... Christian doesn't know he's different. He only knows his life as it is and as it has been. He's not going to be disappointed if I use the wrong sign! And my friends... Tina and Chuck are just amazing. They have learned sign language so quickly. They are raising Christian to be bi-lingual! He knows ASL and English. What a leg up on most kids his age. And Christian is just the same loveable, laughing, adorable, highly anticipated, very important, special little (well actually he's huge!) guy he always has been.

Tina explained to me their family plan for communicating with Christian and when I thought about it, it makes total sense. When I'm around Christian I try to limit the background noise and speak slowly and clearly to him. That's not really any different than if I were speaking to any child who's learning the proper words for the world around him. I've tried to master the few signs that he already knows. To me, this is really no different than if another friend was trying to teach her child to speak Spanish and thus asked us to say "agua" as well as "water." Once I got over my own insecurities of not being fluent in ASL, I was willing to try using it more. It's not like Tina and Chuck knew ASL before Christian was born! We are all learning together and I am all for learning regardless of the reason.

And then, there it was, my moment of clarity. I've never seen a more beautiful birthday party. All of Tina and Chuck's close friends and family were in their kitchen surrounding Christian with love and well wishes. We all signed Happy Birthday while we sang it! It was an absolutely beautiful moment when I realized - it does take a village. And I'm not going anywhere. If anything I've got a reason to start getting regular mani's if I'm going to be talking with my hands a lot more! And ASL is so fun! Spirit fingers for applause?!! I love it!

Sunday, March 16, 2008

Coming Home

Amazing weekend. My cellphone was stolen, so I lost all of my I have no emails and no numbers. Someone is trying to tell me something...and I'm listening. Luca and I saw each other for the first time in a long time and we still like what we see after so many intense and difficult years. Miraculous. We ate, shopped, drank, visited a museum, talked, shopped, talked, laughed...unbelievable. We shared my iPod as we walked, he had downloaded this Lenny Kravitz song for me...crazy beautiful.

As we were leaving the bed and breakfast, the owner shook our hands, nodded and said, "Thank you, come again!"
I smiled.

Friday, March 14, 2008

My First Published Article *smile*

Hi Everyone...I have a couple of things I want to blog about, but no time. Today is my husband's birthday - Happy Birthday, Honey!- and we've decided to go away...away...away for the weekend for the first time in eleven years - not kidding. Be back Monday (okay, maybe Sunday *smile*). Hmm. Two entire nights without children, wonder what we'll do. Think I'm going to have to hunt down something very little and inspiring..I just can't decide on the color.
Anyway, I diverge.
A couple of days ago, Karen told me she saw the article I had written for the Hands and Voices Publication "The Communicator." (If you've been following the blog, a lot of this is old news...but it is my first article published:))

As an American Mom thrilled to begin living in Tuscany, I disembarked the airplane wondering what new experiences, surprises and adventures awaited me. My mind painted scenes of an exciting life rich in cultural exploration, new language opportunities, romantic dinners with fine Italian wine and my ten month old child becoming bilingual in mine and my husband’s native tongues. One month later, the Italian-speaking Audiologist diagnosed Jordan with a profound bilateral sensori-neural hearing loss, immediately fitted him for hearing aids and we began a journey far richer than any I could have ever imagined. I did not speak a word of Italian, but I understood when they told me I could no longer speak English to my own son if I wanted him to acquire proficient language skills.

We lived in Italy, Italian would be our new language. We acquired language together during a long, frustrating, and tantrum-filled process for each of us on a different, yet similar level. I walked through the main street of the town surrounded by incomprehensible voices speaking jibber jabber that only slowly began to be intelligible when I could speak to people face to face and watch their mouths form the words as they spoke. Jordan wore his hearing aids and struggled to make sense out of the new sounds bombarding his ears, he learned to speech read quickly and learned new vocabulary words only after they had been repeated hundreds of times. Each of us determined in our own way, we began to learn to speak and understand Italian together.

Our audiologist and speech therapist both told me that I needed to speak Italian in our home as much as possible, which did become easier over time. Speaking a language different than my own to my son created a sort of communication wall, that was bridged by the incorporation of only one fundamental English sentence: “I love you.” I could go an entire day repeating speech therapy lessons, Italian idioms, sounds, etc including being called “Mamma” instead of “Mommy, “ as long as our day ended with “I love you, Mamma.” Words in our native language represent much more than the letters that compose them, connotation versus denotation and until you are truly “inside a language,” the words remain meaningless. Behind a language lies the culture, to fully comprehend the Italian language, we had to live the culture. I intentionally did not seek other Americans in Grosseto and found Italian friends.

These Italian friends all had children Jordan’s age, so I was able to incorporate social development with his language acquisition. I had playgroups in our home where I supervised his play and provided him with words he was lacking so that the other children could understand him and he would be less frustrated. When the kids played hide-and-go-seek outside, I shadowed Jordan to make sure he heard the counter say, “Ready or not, here I come!”

Discouraged by the fact that I could not speak English to my own son, yet unwilling to give up the possibility entirely, I invited four of his best friends to a weekly “English lesson” in my home. Jordan learned numbers, colors, some verbs and adjectives, nowhere near fluency, but a beginning. He did well with his hearing aids, however when he reached the second half of third grade, he began throwing temper tantrums because he couldn’t understand why his friends were laughing and could not hear well enough by phone to call a friend for homework by himself. We struggled during homework as he could not simultaneously hear my voice and read the page in front of him. My son, intelligent as he was, realized that he was becoming an outsider among his friends and this, to me was unacceptable. At this point, my husband and I decided to opt for the cochlear implant.

The cochlear implant has changed our lives. I hesitate to say the word “miracle” because Jordan’s success is obviously a product of years of intensive auditory-verbal therapy with hearing aids and a determined family circle, but the device itself is miraculous in that it reproduces sound in such a way that Jordan hears me upstairs when I call to him from downstairs. He no longer relies on speech-reading, talks on the phone, listens to his mp3 player and when playing hide-and-go-seek, he catches kids who count too fast or skip numbers… he hears. Last summer he attended a baseball camp in the USA with English-speaking children and by the end of the week was screaming, “I got it!” like a champ…incidental language. He speaks to my family in the USA by means of SKYPE and can understand what they say; even my sister said on our last visit that she is finally able to have a real conversation in English with her nephew. Jordan currently attends a middle school specializing in Music Education and studies the acoustic and electric guitar. He was recently voted Class Representative.

Have a great weekend!!!
*packing the stilettos*

Thursday, March 13, 2008

Teachers and Students

HA! I woke up in a pink mood today *smile*...a woman reserves the right to change her mind, hair color and blog color at any given moment! I can be fickle like that...I haven't been in a while, but it's coming back. Last night I went to my Pilates class...NEVER,never take a pilates class while recovering from bronchitis, it's all about breathing, abs and glutes. I almost passed out, had a hacking cough attack and got some killer cramps in my abs, which miraculously I have found 28 pounds later...the glutes are another story - but a woman's gotta be soft somewhere lol.

I called my mom this morning and we had a long talk. My mom is an expert on certain things and she offered up some quality advice this you Mom. And so, everyone will suffer in pink.

My all-time favorite teacher was my twelfth grade English teacher Mr.Gray. I have never tried so hard to make a man laugh in my entire life - he was the kind of man who smiled with his eyes, yet hid his smile with his gray mustache. Adorable, especially to a 17 year old girl. He was the first teacher who gave me a "B" in English and I worked my ass off to get that final "A" as my end of the year grade. We remained in contact after high school, every now and then I would return to visit him and share some of the college experience. I remember once he told me that he would have loved to have written a book about how people come in and out of our lives and touch us in ways that we never could have imagined. One brief encounter and our lives are altered in some way.

I remember writing Mr. Gray a letter about a Literature of AIDS course I was taking and telling him about an experience that touched my life tremendously. My professor had given us an assignment to go to Washington D.C. to visit the AIDS Quilt that was spread across the mall...the Quilt was spread across an area comparable to that of 20 football fields, this was in 1994 or 5. Julie and I took the subway to D.C. from College Park, had lunch, went shopping and finally made our way over to the Washington Monument, where we saw and felt raw emotion. When we had arrived the day had been partly sunny, but now the clouds were looming. As we walked around the perimeters of each individual quilt, reading the names, hobbies, passions of those who had been taken by AIDS, a voice over a loudspeaker reading name after name after name of the people represented by those quilts accompanied us. Unless you have lived this experience, you just can't even imagine the sadness.

Julie and I didn't really speak, we would just look at each other every now and then, sometimes eye contact is enough. Then, we felt the first raindrops falling. The voice over the loudspeaker made the following announcement: "WE ARE GOING INTO AN EMERGENCY DOWNPOUR SITUATION, EVERYONE NEEDS TO FOLD A QUILT AND PLACE IT IN THE PLASTIC BAG THAT YOU WILL FIND UNDER THE QUILTS!" There were about five of us standing around one quilt, each of us reacted and we folded "our" quilt together, then we kind of looked at each other with adrenaline racing and an embarrassed smile. I turned my head to see what the others had done, I still get chills thinking about this...The entire AIDS quilt, 20 football fields long, had been placed in bags and all I could see was a bright green lawn dotted with plastic bags. Someone started clapping and everyone joined in under the torrential downpour until we were all clapping, whistling, cheering and soaking wet. Freaking unbelievably emotional moment - the kind of moment that gives you a new perspective on humanity and what we are capable of, not only as individuals, but as individuals working together.

Mr. Gray died of AIDS complications. I was in Italy and missed his funeral.

But, what he taught me about people coming in and out of our lives and the impact they leave is still with me. The impact can be negative, and we learn a lesson from that. Then again, there are those people who touch our lives in such a beautiful way that we are able to learn and grow.

In Aidan's blog, she wrote:
Giving birth to a child does not automatically mean that someone is competent to raise children, and people who have not given birth to children are also qualified to raise and care for children. People who have not given birth to a child can and do contribute a great deal to Deaf children's upbringing. It is not about measuring who is mother enough and who is not mother enough. People who have this kind of attitude who make negative comments are looking for a way to shut up the people who are passionate about children's futures.
I agree with this statement, and as a teacher, I have seen that many parents are not so great at raising their kids or identifying their needs. Each individual child is different and a good mother, like a good teacher, recognizes this fact.

Jean Boutcher's comment really disturbed me and I found the wording highly inflammatory:
This is a good example. The UNthinkable or "not smart" oralists learn to sneer from their audistic masters. The thinkable (intelligent) oralists do not sneer.

The idea of a teacher as an "audistic master" is tormenting for me to comprehend, yet Mishka and others..see Paotie's Blog have experienced this treatment to such a point as to use this term.

The job of a teacher is as delicate and should be as unconditional as that of a mother, any professional who works with children should be conscious of this privileged role.

Some people are born teachers while some people remain students their entire lives. There is a major difference between preaching and teaching. Learning is an ongoing process and true teachers recognize that they will always be students. I have been blessed to have had some exceptional teachers.