Snowcaps and Raisinets

"Sometimes living out your dreams ain't as easy as it seems. You want to fly around the world in a beautiful balloon".

Dreams are important, moments are even more important.
I just finished making caramel apples with Sofia and thought about my Mom and how much she LOVES caramel apples.

Rocky was on tv last week. I watched it with Jordan and Sofia, who fell asleep. But Jordan lasted until the end when Rocky beat the Russians. Your typical USA moment. I saw every single Rocky movie with my Dad and Niki.

USA moments are a collection of sensations that begins with the Pledge of Allegiance, continues with fireworks on the Fourth of July and permeates throughout our culture in such a way that these sensations form our collective spine.

WE are not Generation X...we are Generation Rocky.

Give us an obstacle to overcome and we will find the angle to make it work.

Sometimes you need to live another culture, another mentality to appreciate what it means to belong to your own. Sometimes you need to experience the insecurity of teenage years, free your mind at the University, work for a demanding boss, blow bubbles in Mommy and Me classes and give your child a voice before you find you. Sometimes the transformation comes about in the process of raising your child's voice.

Family moments..I'm learning that families come in many shapes and sizes, and that mine wasn't/isn't so bad.

Politically (In)Correct?

Two people left comments on the last post in reference to the term "Hearing Impaired".

1. Hearing impaired community...huh? One thing I know is that my deaf child is not "impaired" at all. I wish people would start to realize how offending that term is. Deaf or hard of hearing is way more politically correct.

2. There is a groundswell against the words "hearing impaired" that has been building for some time. It's both irrelevant (hearing) and demeaning (impaired), and gives no sense of the capabilities of deaf/hoh people.

I have been away from the states for thirteen years, and Deaf for me is "Sordo". Period.
When I left I remember that, "This program has been closed-captioned for the hearing impaired" was still being used.

Has that changed?
What is politically (in)correct?
I need an education.

How Do You Sign "Sad"?

Hey Jodi,


I'm sending you this link because of your involvement in the hearing impaired community.


This is a crazy story. The author of the book lived in my community. She had twin sons that were turning 9. A Jewish family that belonged to my congregation.


On the morning of their sons' 9th birthday party the father, Neil Jacobson methodically shot and killed the boys in their beds and their mother.


He was too cowardly to shoot himself.


The story is horrific. It happened last January. Frankie & her sister Sherry co-wrote this book that went into publication about a week before she was shot.


I was thinking about you when the book first came out, given your past experience as an author of a children's book also dealing with helping young children cope with impairments.


Perhaps you can spread the word about the book to those who may be interested. The proceeds will go to Franki's sister. So sad that Franki never got to experience the success of selling her book.


Her asshole husband is awaiting trial in a Palm Beach County prison.


If you google his name you can read all about him.

Marcie

I then went to the page she linked and found this message from the author:

I just published "GREEN BEANS BIRTHDAY PARTY"


Go to Amazon.com and type in Green Bean's Birthday Party to view the format, cover, and back cover.


We combine American Sign Language, rhyming and reading in this book. The key signing words are highlighted by two adorable characters, Signing Sammy and Signing Suzie who wear "Magic Signing Gloves" to demonstrate how to sign. This book has an engaging story and colorful illustrations that will capture the attention of a child and encourage communication. Within our research there is no other book similar to ours. We have a new and innovative approach to teach children 8 months to 4 years old communication skills through a signing storybook.


This is an educational as well as an entertaining book. More parents are teaching their kids sign language since it decreases tantrums and frustration, and increases IQ scores, vocabulary, communication, and self- confidence.


This book was published December 2009 and is currently sold on Amazon.com.


This is the first of a series of signing storybooks by Sign Along With Me.


Hope you love it!!


Frankaleana Beana

Paranoid?

Amidst all the other chaos, last Thursday I was asked to work as an interpreter for a meeting between various wine, cheese and other Tuscan delights producers and the Italian Trade Commission. Nothing exciting ever happens where I live *Smile*- we import. So, there I was translating from English into Italian as these Tuscan producers had the opportunity to market their goods into Private Label merchandise.

I think they were overwhelmed, because of the twenty producers, only about five actually tried to push their products.

In any case, I met a couple of fascinating people- I absorbed.

One thing kind of disturbed me..a Sr. Marketing Promotion Officer named Patrick had my opposite life. Born in Bari (Italy), he's been living in the USA for 43 years. It took me a while to digest this number. Mine is currently 13, but the idea of living in Italy for 43 years is flat out terrifying. He, like me, tries to make the most of his two worlds and he can, because his job gives him the opportunity to travel to Italy at least five times a year. I'm usually struggling for that one trip back.

Nice experience that left me ko for about three days:-)

Then, something else occurred. I received an email from the mother of a three year old deaf child with a cochlear implant who said she would like to help me by sending material to an Italian Congressman interested in helping us pass the screening. My first reaction, obviously, was your basic ear-splitting scream. Then, I went to sleep.

When I woke up, I began having doubts. My mom always tells me to be careful what I do and say on internet. She warns me that there are psychos out there, etc. Yes, we are in the international public eye and I try to not think about that to work on promoting the cause, helping others and offering resources.

*But*

Sometimes that twinge appears. In Italy, there is a huge neverending battle between the FIADDA (oral approach) and the ENS (Deaf Community, culture, identity, etc.) over officially recognizing Sign Language as the official Deaf language. The language in the bill has been modified to not recognize it as the language of the Deaf, but as a language in and of itself...however, the battle wages onward and both associations are obsessed with this tit for tat situation.

I stay out.

The thing that worries me about this email, and I hope I'm wrong because for the past three years, no matter how much we've bickered and debated, I have never had a negative experience with anyone....the thing that worries me is that the mother asked me twice to forward her my materials and any medical materials we've created. I can't forward her that information.

Maybe I'm paranoid. I hope I'm paranoid.

The deeper I go in this situation...the more doubts seem to arise. I have always worked alone on these projects aside from the GPOD women-UK, USA, Australia, parents from the Ci Circle, my pediatrician and CI Surgeon and Ferdi.

I think I need to keep it that way...but a Congressman...now that would be an important addition.

I'd just like to add that Amazing Amelia's mom and dad were just in an article in People's Celebrity Babies. They are a beautiful family and Debbie writes an incredible blog. Check it out!

From Helen Keller to Jordan

On my train ride to teaching the parental support part of pediatric course number 8, a grandma sat across from me. She had smiling eyes.

She kept staring at me as I was going over my powerpoints, so we began conversing. She asked me what I did. Hmmm just happened to have the newspaper article in my purse; I whipped it out, smiled and handed it to her proudly. She nodded as she read the article and said, "Ohhh, you have a deaf son." I said yes. She looked me straight in the eyes and said, "Oh my, I just saw that amazing film on tv a week ago, you know, the one, what's it called?"

I had no idea.

She snapped her fingers and said, "Anne the Miracle Worker! So, your son signs, it was such a beautiful film."

Helen Keller.

I loved reading about Helen Keller as a 10 year old child. Her story fascinated and touched me.

I said, "No, my son doesn't sign."

She replied, "Oh, I see."

I turned my computer towards her and pressed play on the video of Jordan thanking the pediatricians. Her eyes filled with tears.

I advocate to educate. No better place than the trains of Italy.

The Article...NYT-Italianized=Corriere della Sera

Ok. Here it is.
I woke up at 6 am and called my friend Francesca who's up at 5 to open the coffee bar two blocks from my house. She sells newspapers. She was busy. She called me back fifteen minutes later and read me the article in the Italian National Newspaper equivalent of the New York Times. I couldn't go back to sleep. I jumped out of bed, threw my coat over my pjs- the Paul Frank variety with monkeys all over the pants, threw on a pair of boots and walked the two blocks.
I sat myself right down -newspaper in hand- amidst the early Sunday morning risers- hunters, wild boar hunters. With my back to them all, I drank my cappuccino, read and started screaming. I vaguely overheard my friend telling the hunters not to worry that I wasn't crazy.
Here it is: Article by Ruggiero Corcella in Corriere della Sera

Hearing: Families and Medical Professionals request the screening for all

Only 6 out of 10 newborns have access to the test that will indicate a potential hearing loss
Early diagnosis is fundamental

"Newborn Hearing Screening must be performed in every single birthing hospital in Italy". Jodi Cutler Del Dottore explains it clearly. Cutler, a dynamic (he actually wrote dynamic) American from Baltimore who has been living in Tuscany for 13 years, is the representative of a parent movement and the creator of a blog (daigenitoriaigenitori.blogspot.com) and forum on facebook with a large following. Her son Jordan suffers from profound bilateral sensorineural deafness since birth, which he has overcome thanks to a timely diagnosis and a cochlear implant which he received in Italy. Jodi, like the majority of  families with deaf children, is fighting to ensure that newborn hearing screening becomes mandatory throughout Italy.

The reason? The earlier the diagnosis, the sooner the treatment and habilitation may begin. In such a way, the percentage of success in the general development and language of the child increases.
At an international level the general consensus agrees regarding the necessity of universal newborn hearing screening programs, that it should not be limited to children at risk, and that it should be performed within three to four months of age. Even in Italy, the numbers confirm the need. "1-2 children per thousand are born with a hearing loss- says Roberto Albera, director of Audiology at the Molinette Hospital of Torino- Each year 200 children are born with a form of profound deafness." Despite the approximately 100 thousand children with hearing loss in our country, the diagnosis of deafness still occurs extremely late- between 22 and 28 months.

The data collected by the Institute of Social Affairs of Rome reveals that only 6 children of 10 immediately undergo the screening. "When we began our data collection in 2003, only 3 out of 10 underwent the screening- says Luciano Bubbico, Otorino of the Department of Biomedical Sciences  of the Ias- but there still remains a strong discrepancy between the hospitals of the North, where the screening is diffused, those of Central Italy with many problems, and those of the South that are practically non-practicing."

At the end of 2010, remaining deaf, or treating the deafness and offering the possibility of access to language still depends on geographical factors. The Italian Pediatric Federation has understood this and in collaboration with the Italian Audiology Society and Parent Associations, has created its own Audiology Network. "Our goal is to inform and educate our colleagues- explains Giovanni Lenzi, Pediatric Chair of the Project- so that they incorporate the screening and have the tools to be able to evaluate the auditory development stages of the children".

In general, a clear picture is missing that mandates the initial screening, an entire network of second level coverage, regional Centers of reference and a National registry."In a civilized country, it is essential- emphasizes Alessandro Martini, audiologist of the University of Padova. -It is also necessary in order to understand if in the various regions more important epidemiological factors exist which may enable us to intervene at the level of prevention." Many adopt the National guidelines for the screening, which are present in the "Essential Levels of Assistance", frozen for over a year for problems of finanical coverage. To un-block the guidelines, we hope they will surpass the Essential Levels of Assistance to directly pass the Screening into the new National Healthcare Plan 2010-2012 that is currently being discussed.

Screening yes, but not screening alone: The ENS (equivalent of NAD, and I have no idea how they entered this article) also complains about the lack of information for the families regarding all of the didactic and rehabilitative possibilities for a deaf child.

And there you have it...

Tick Tick Tick...

I think I'm having a moment. I believe it's called self-doubt. It ain't pretty.
Maybe because everything is pretty.
Jordan and Sofia are growing and both are involved in activities. Jordan's swimming and now studying piano. Sofia's about to start theatre. It was interesting in the pool yesterday. At a certain point, Jordan was swimming a lap like a missile, but his form wasn't the best. His swim instructor tried to get his attention, but between goggles and deafness, it was impossible. His swim instructor also happens to be his support teacher in the classroom (wink); after struggling and failing to get him to look at her, she turned to look at me, hands thrown in the air in desperation.
I couldn't exactly tell her that I usually throw something at him to get his attention in the pool or in the sea, probably not very politically correct, so I just smiled and nodded.

So, um, well, I think this article is maybe supposed to come out in this major Italian national paper tomorrow and I have absolutely no idea what the journalist wrote. Extremely unsettling feeling. So, I invited about seven kids over all day today to distract myself from thinking, wondering, etc. But it's not working.

It's times like these that I reflect about what we've actually done over the past fourteen years of Jordan's life. And how much more I could potentially do.

I've spent a great deal of the past three years a hysterical, fighting, battling, aggressive, emotional woman trying to reach an objective. I could come closer to reaching that objective if the article is powerful. How do you not have Newborn Hearing Screening as a mandatory part of National Healthcare in the year 2010, when Italy offers all services necessary to help families with a deaf child? It makes no sense.

No matter how many doctors I've met and educated, I'm still that mother sitting in front of my audiologist trying to understand that she was telling me my son was deaf in a language not my own.

I am still that mother.

I Do

When I began writing this blog, I wrote and wrote for the comments. Because the comments for me were validating, communicative, interactive and I felt desperately alone in a Tuscan tunnel. Then, time passed and the situation evolved- I wrote for myself- I had this overwhelming need for self-expression. Now, I write to share, because the most bizarre series of events continues to occur. I write because maybe there is another mom who can benefit from the mistakes I've made, who can realize that it's okay to make mistakes because life and most of all, our kids, are extremely forgiving.

When I go to a Congress, I become the Congress. I live, breathe and absorb the new information, the fascinating people and the passion they throw into their jobs. I don't stand still. I can't. After being in a tunnel for eleven years, and it wasn't a bad tunnel, it was where I needed to be at the time...bring on life.

Our session was a tremendous success. The room was jam-packed and despite the heavy audiological content, a majority of people remained until the end. Audiologists and neonatologists came from all over Italy, Anna Orato blew them away when she announced that she was deaf with a cochlear implant four minutes after she began her speech. I saw the participants in the room freeze. And I beamed.

After the session, I checked my email, the one time during the entire congress when my internet key worked...to find an email from a journalist of Corriere della Sera- major national Italian newspaper - asking me to contact him. I called him and he proceeded to tell me that he had already interviewed a Professor and my pediatrician for an article on the importance of Newborn Hearing Screening, that he had read my blog and wanted my permission to quote me on some things I had written.
*Ok*
Obviously, the newspaper went on strike so the article did not appear, but we're hoping it will be in Sunday's paper. He told me he would cite the blog and facebook forum. Can you even imagine????

Next, I met the Professor from Jerusalem responsible for the the Israeli-Italian Pediatric agreement. He happens to be the same man responsible for passing Newborn Hearing Screening into a national law in Israel. His daughter is a speech therapist.
*Smile*
After I managed by miracle to get an invitation to the President's dinner, in, um, the FOUR SEASONS HOTEL - a hotel transformed from a medieval convent- we dined in an outdoor private garden- he approached me again to discuss our Audiology Network. The following words actually came out of his mouth, "Would you be interested in presenting at the Pediatric Congress in Jerusalem in May?"
The world stopped.

I lightly touched his jacket with my index finger, hesitated a millisecond and replied, "Yes."
(Nothing is definite, of course, but the question made the table)
I sent him an email the day after the Congress ended.
He replied the next morning and asked me if he could refer our resources to the Israeli Minister of Health.
*Pinch me*

I was wined and dined and intellectually enriched. I attended pediatric sessions on bullying in the schools- where there was an excellent speaker who addressed the issue of homosexuality and bullying- and children's reactions to violence in the homes.

The quality of speakers and the passion with which they spoke opened my world.

Florence by night is something every person in the world should live, whether you stroll the streets with a gelato in hand or you're pushing the baby carriage, arm in arm with a loved one...
I lived it absorbed in Newborn Hearing Screening while sipping on Chianti and savoring a really thick bistecca alla Fiorentina.

All thanks to my son.

Amazing.