Oxygen, Please

Yesterday I stopped breathing at least five times..and managed to recover. Support comes at the most unexpected times from the most unexpected places. I asked for help, resources...and I received it all - in two days. Miraculous and beautiful.

I have had the extreme pleasure and fortune to have been working with five exceptional women passionately involved in parental support in Deafness. Five intelligent women who have been around the block gazillions of times before I even learned to crawl in this environment. I have complained about how frustratingly slow Italy is in responding to requests and how difficult the process has been- note: they have ALWAYS come through in the end- but I've had to sweat so many times. I posed the simple question to the ladies: Has anyone got any material regarding pediatric courses in Newborn Hearing Screening and Deafness? Pauline Walker from the UK gave me the name and an email address of Gwen Carr and she responded in two hours of my request from her cell phone on vacation to tell me she would be returning on Monday and would get back to me on Tuesday. She replied to me again on MONDAY!!!!

*Humble and grateful me*

Leeanne Seaver of Hands & Voices sent an appeal to her contacts (you should have only seen the email she sent) and I received replies two days later from Christine Yoshinaga-Itano, Mary Pat Moeller and Cheryl Johnson. Note: I stopped breathing after every single one of their emails filled with excellent resources and ideas, aside from the fact that they are all leading researchers in the field who I cite when giving presentations. I may have well received emails from Angelina Jolie and George Clooney- SAME EFFECT!

*USA USA USA*

We had a SKYPE conference call with the GPOD women last night, my first one ever and it took me at least three minutes to figure it out: UK, USA, Italy, Australia on the horn. We discussed the survey and while I can't go into the details right now because we are still collecting data, I will say that we have results from over 28 countries worldwide...thank you so much for completing the survey.

I honestly still ask myself how the hell I am a part of all of this and the remarkable thing is that it just keeps getting bigger...all because of our book- the starting point that catapulted me into an arena that has expanded my mind and has given me the opportunity of providing resources to others that were so lacking during our experience with Jordan.

Sharon, one of my guardian angels/devil's advocate:-) who I met through this blog left a comment that I still have not answered. She asked me if I discuss sign language as an option when I meet with these families. My honest response is no, I don't. Not because I don't believe in sign language, but because to propose sign to a family whose child has just been diagnosed as being deaf, I would need to have resources. I had contacted the President of the NAD equivalent- ENS and never received a reply. I certainly can't invent things myself, especially in Italian. While working with these families I listen and offer support based on our experience, many times it's just one phone call where I reassure them. Then, they take it from there and do their own research. I am not adequately armed to arm them.

*Divine Providence*

I met with Dr. Elena Radutzky today, a fascinating woman, about an American Fulbright scholar coming to study in Italy. Dr. Radutzky is just an unbelievably phenomenal woman with a history of experience internationally, and at our meeting she started pulling out names and email addresses of people who are just the contacts I need to supply my missing information. I seriously find it incredible how the right people at the right time step in line in this entire process. The road has been paved and now I must walk it and plant as I go along for the next person who chooses this path. I don't feel like there's a choice, it just is.

*Thankful?*

I am the most grateful person in the world right now. Aside from the exceptional men I have had the privilege of working with, and I have been working with truly amazing ones, I will say this:

No passion exists like that of a woman. No level of empathy surpasses that demonstrated by a woman. And when you combine the love of many mothers with the passion of many women, you build Rome in a day.

 

Hear the World Expedition

A mom from the CI Circle just posted this information that you may find useful:
Call of the Wild: Amazon Adventure 2010, Peru
Introducing Hear the World Expeditions

 

Phonak's Hear the World and Global Explorers have launched the first-ever Hear the World Expedition, an adventure journey of a lifetime scheduled for July 2010 for hearing-impaired students aged 17-22. During this unique trip into the Amazon, students will explore the incredible rainforest with field scientists, interact with a rich and diverse culture of people, participate in one of the most unique "outdoor classroom" settings in the world and build friendships with other students that can last a lifetime. Because we believe that this opportunity should be open to every student possible, we ask hearing health professionals to help identify and encourage those students who may be outstanding candidates for the trip (click here to read more). To nominate a student or begin the application process, please visit www.globalexplorers.org.

Application deadline is December 15, 2009.

Global Explorers is a nonprofit organization driven by passion for sharing the most educational and life-changing travel experiences available to students of all abilities and backgrounds. Their programs are driven by education and offer a comprehensive, responsible travel experience designed to genuinely enhance the lives of participants in the most meaningful way possible. They work with groups of middle school, high school and college-aged students and their educators from schools and
organizations of all types.

Hear the World is a global initiative by Phonak to raise awareness about the importance of hearing and the consequences of hearing loss - a problem that affects more than 16% of the world's population. The Initiative addresses the social and psychological effects of hearing loss, and provides information on prevention and solutions. Hear the World is committed to making people aware of how important it is to avoid hearing loss and how to take prompt steps to correct it.

A primary focus for Hear the World is to help create a world where hearing loss is no longer a handicap. Hear the World Expeditions is one great step toward making that vision a reality.

For more information on Hear the World, please visit www.hear-the-world.com.

The Infamous 20 Year High School Reunion

I'm desperately trying to control myself, my excitement and my dying to come home because I'm not leaving for another twelve days, but it's fairly close to impossible to not bounce as I walk. I have taken a vow of self-control, and I'm starting to think it's rather boring. Aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaah!!!!

First of all, I desperately need to leave the Tuscan scene, it's killing me. I don't desperately need to leave my kids, but there is no Thanksgiving break here, so I can't take them with me. I have not been home for Thanksgiving in thirteen years. I've been trying to imagine the scene, that's how the going back to Elementary School post came to mind, but it's painful. I spent my last Thanksgiving with my grandfather who is no longer with us and my grandmother who is with us but not entirely. I know that all these Thanksgiving memories will flood back and I will crave the kids' table that I so desperately wanted to leave behind to finally graduate to the adults' table. This year, I will volunteer to trade places with a child- just send me straight to the kids' table and let us chat psp and wii.

When I was in High School, I read the play "Our Town" in Mr. Gray's twelfth grade English class. I was in love with Mr. Gray. There is a scene in that play where Emily asks to go back to a moment in her life and her wish is granted. What she sees is herself going through the motions on one of her birthdays. She watches her mom and her dad and realizes how precious they were, yet that she never really absorbed them completely, fully. Reading that play gave me a new perspective on my loved ones, and I always really tried to concentrate on them, especially during holidays to remember how they smelled, how they smiled, how they breathed and above all how they laughed. But those intense try-to-remember-and-absorb-moments have faded.

There is no turkey in Tuscany, the ovens aren't big enough. Stuffing? Non-existent. My memories, feelings, culture are so totally different than what happens here, and I need to go home.

Today I spent the day alone, and I was fine. Speaking of culture, Sundays are spend the day at the mother-in-law's house and eat til you pass out. No longer an option. My kids ate til they passed out and were so happy- this is a fundamental part of their growing up culture. Now I find myself here in this place without family and it is not an easy situation. Yet, at the same time, it's okay. Life changes and we change with it, adapt and see the glass as half full.

I don't know exactly how to explain the feeling, but I have been so many different Jodis that I'm trying to figure out how the hell to come to peace with this one..the current one. The high school reunion thing has me somewhat in crisis. First of all, I don't know if I can go because my plane leaves the next day and the night before I leave is always critical spend the last moments with loved ones time. Second of all, thinking about my reunion makes me think about the high school Jodi and it terrifies me to think how much I've changed yet stayed the same. Twenty years is a long, very long time.

The good news is that I have no enemies from high school, so I come with a clear conscience. I've reunited with most people via facebook, so the surprises will be limited. I will say that I'm curious to see who comes, who's changed and who's stayed the same. But, I could live the rest of my life without attending the reunion and survive...it's just that there's this curiosity thing goin' on.

Anyway, I will say this. Twenty years later, I am satisfied with who I have become. And I consider myself extremely fortunate.

Going Back to Elementary School

I loved Elementary school. I had the most spectacular class and incredible memories of kickball tournaments, after-school rollerskating events to the tune of "Another One Bites the Dust", lunchroom "Truth or Dare" games and sleepovers at my girlfriends' houses (they had Ken and the Barbie convertible). Loved that school- Church Lane Elementary, the time spent there really saved my life in many ways.

About ten years ago, I drove past the school, stopped my car and walked inside. I saw the dreaded principal's office to my right and really expected to see the old principal. She was no longer there. I looked in front of me and everything looked so, so tiny. I walked into the Multi-Purpose Room on the left and my eye caught the infamous grate under the stage where I sang my first (and last) solo, "Bye Bye Birdie!" Right by that grate was where this really huge and intimidating fifth grade girl named Beth gave me an education regarding the most offensive swear words. I was horrified, yet fascinated...and I have never forgotten those words. Actually they are a fundamental part of my vocabulary to this very day.

After leaving the room, I took a walk down to my first grade classroom...OMG, everything was miniscule!!!! And EVERYTHING smelled the same including the bathroom where my best friend got her period for the first time. Nothing like getting your period in fifth grade to be the envy of all the other underdeveloped girls in the class.

Overall sensation: Nostalgia and Yes...I had outgrown Church Lane Elementary School.

Unbelievable character-forming memories...never to be relived- but always to be appreciated, truly appreciated.

Smokin'!

Hot off the press!!!
NHS 2010 - Beyond Newborn Hearing Screening: Infant and Childhood Hearing in Science and Clinical Practice
Villa Erba Congress Center, Cernobbio, Italy
June 8 10, 2010

(I'm hoping to be in a better hotel this time and not one with a plastic shower box in my room and a turkish toilet down the hall- not that it matters- I'm there!)

 

*Italy's finest in eye-candy to hold your attention*

The NHS 2010 will include Keynote addresses, free communications, massive
poster sessions, Workshops and a number of Satellite Events and Special
Sessions. To name a few:

- A series of linked workshops on the theme of delivering an effective
screening programme organised by the National Health Service Newborn
Hearing Screening Programme (NHSP) from UK;

- A Special Session on the state of implementation of Early Hearing
Detection and Intervention Programs (EHDI). National and Regional
representatives will report on the state-of-the-art from all around the
world;

- A Special Session on EHDI in Developing Countries Opportunities &
Challenges;

- The General Assembly of the EFAS (European Federation of Audiology
Societies) for National Representatives;

*AND....HEH HEM...*

- A Session entirely dedicated to family support, organized by the Global Coalition of Parents of Deaf/Hard of Hearing Children (GPOD);

WAHOOOOOOOOOOOOOO!!!!!

- Oticon Paediatric Symposium;

- Phonak Satellite Event (Richard Seewald among other guests).

The topics will cover all aspects related to early hearing intervention,
from comprehensive reviews on plasticity and re-organization of Central
Auditory System (Anu Sharma, Keynote Lecturer) to educational Workshops,
from improving methods and protocols to assess hearing in newborns and
infants to family issues, from strategies to improve the outcomes of EHDI
programs to new concepts in hearing aid fitting and advances in cochlear
implantation.
Join us in making this historic event another great success!

NHS2010 Secretariat

Remember:
Abstract submission: January 25, 2010
Notification of acceptance (oral or poster): March 8, 2010
Early registration and Hotel accommodation: April 12, 2010

www.nhs2010.org

For those of you who may have missed the news, *smile* there will be an entire session dedicated to parental support, where the GPOD members will present a paper on the famous survey completed by many of you, the amazing parents reading this blog post. If you still haven't completed the survey, click here. Note: this survey has been translated in Arabic, Chinese, French and Spanish (I would be the slacker who hasn't translated it into Italian). So, thank you for being a part of this exciting and revolutionary moment in time, when the parental voice is being incorporated in the NHS process.

Very special thanks to Professor Ferdinando Grandori who has encouraged and supported the GPOD mission:

Mission Statement: The GPOD promotes a communication-unbiased parent perspective to early identification and intervention systems, educational systems, and support services for families with children who are deaf or hard of hearing. GPOD is an international collaboration of parent groups dedicated to promoting improved systemic protocols and practices which encourage informed choice and the empowerment of families with children who are deaf or have hearing loss.

...since that very first meeting under the tree.

2 Years Blogging -Goal for Year 3: Self-Control

It's been two years and I still haven't learned the art of self-control. I react without counting to three and whatever happens, happens. I can't go on like this, it's oftentimes counter-productive. Writing is the perfect way to get things off your chest, but sometimes some of that chest stuff needs to remain there. So, while I'd like to spit a lot of stuff right now, I can't. This creates double the amount of frustration. I need to say a lot, write a lot, and I can't, because at a certain point I need to learn self-control and how to manage issues without writing them in my blog- which is really what I've been doing for the past two years.

Two years ago I started writing this blog and never would I have ever imagined that I would have been able to keep it going this long. But writing throughout these past two years has been a cathartic experience and the opportunity for me to think through a lot of issues.

The surprising thing is that the issues continue to evolve, my kids keep growing and so do I. I've never really looked at myself as a function of myself, only as a function of my kids. In this two year time period I have both built and destroyed. Now I'm trying to deal with the repercussions of both.

I received a letter the other day in regard to work and by what was written in the letter, it was obvious that this person had no idea what I've been working on and at what level the past two years. He/She saw me speak as the passionate mom fighting for her cause...he/she didn't meet me as the coordinator of a project that I had to fight for every single time an issue was raised. He/She didn't see me arguing with doctors to make sure my ideas were heard and enacted. He/She wasn't in the room with me when I met with the President to present a project created together with American support, or how I made the president come around to my side of the table during the meeting.

How many roles can we assume in the course of the day? We've discussed this a thousand times. I can be the sweet mom who makes you live what I've lived for five minutes of your life, but the work I do does not stop there.

How do you make these people understand that?

*Sweetly*

And people wonder why I'm schizophrenic, this place is enough to drive you crazy.

Catch 22

 

Well, Halloween 2009 was a smashing success with Jordan bringing home "Mr. Halloween" for some wicked dance moves and Sofia Madyson racking in the candy after a Trick or Treat extravaganza in the center of Grosseto. I must say the Italians are improving and it was with great pleasure that we went from shop to shop hunting down candy. The only thing was that one shop gave unwrapped candy and I had to explain to Sofia that she couldn't have that and many shops hid the candy so that we weren't sure if they were giving it out or not. Never seen anything quite like it, but I'm not complaining, just making an observation.

The kidlings are growing and Jordan is becoming "Mr. I'd like to go out with my friends". Sofia, however is in kind of a difficult phase of "Mommy, come here!"

She's afraid of being alone...

If she's playing downstairs, she calls, "Mommy, I don't want to be alone, come down here!"

If she's upstairs, she calls, "Mommy, come upstairs, I don't want to be alone!"

The worst is when she has to go to the bathroom, "Mom--!" I draw the line there, the bathroom is alone time and must be taken care of...alone.

It's psychological dramas like these and how you handle them that scar our kids for life. How do you find the fine line between helping them to find their independence while reassuring them that they are not alone by being there when they need us?

It is fundamental that they can be alone without being afraid...fundamental because the more we grow up, the more we need to rely on ourselves, and we do often find ourselves alone at many different points in our lives.

It ain't easy.

But I am definitely taking advantage of the situation to snuggle her up.

Jordan-"I smell like a man" - "Leave me alone, I'm chatting" - "Hey Mamma, what do you think of the song I just downloaded" goes through moments of "Mamma, you're annoying" - "Mamma, can I have a hug?" And he doesn't realize that he's in a moment of growth.

Love watching my kids. Love it when Sofia gets angry and her eyes get all scrunchy. Love how Jordan tries to kiss up to me when he realizes he's exaggerated in trying to assert himself. But most of all, I really love how they realize when they've gone beyond their limits, limits that in some way or another Luca and I have been able to impose so that they know right from wrong.

And it is not always easy to keep track of right and wrong when there are emotions involved.

It's amazing how powerful kids are in imposing limits on adults...just like adults impose limits on kids.

L*O*V*E that.