An American Mom in Tuscany: Jordan's Cochlear Implant Story

When You Open Doors...You Open Minds

2013-05-13T09:39:00.002-04:00

Saturday, May 11th in Rome, we had our first National Meeting of my forum "Let's Face Deaf Together".
Jordan and I left Grosseto for Rome on Friday afternoon. He slept the entire ride and when we arrived in at our Bed and Breakfast he requested pizza and tv. I was dying for The Vatican and the Fountain of Trevi, but I decided to make him happy. Two episodes of Smallville and ten pieces of pizza later, we headed for the Colosseum and had a quality mother-son moment.

We then walked to the Fountain of Trevi to meet the Organizing Committee for our pre-scheduled dinner. And a good time was had by all:-)

The next morning we woke up and headed to the Goethe Institut where we found people streaming in the door. We were greeted by smiles, hugs, cochlear implants, hearing aids, sign language users...members of the forum- presidents of different associations throughout Italy, etc. I had asked the surgeon (Professor Stefano Berrettini) who performed Jordan's CI to moderate a round table discussion entitled: From Newborn Hearing Screening to the Cochlear Implant with three Professors from the three clinics in Rome. Berrettini had just held a two day conference in Pisa in collaboration with the Karolinski Institute, that I attended, yet despite his exhaustion, he still woke up at 6 in the morning to be present in Rome for our Meeting. (Amazing!!!)

I had somewhat of a crisis because the computer would not read my powerpoint, so I lost about 40 minutes trying to figure it out- thank goodness another speaker had one of my past powerpoints on his usb pendrive, so I had to wing it, which left Jordan's slides out of the program.

The meeting began. We had two sign language interpreters and a woman responsible for Respeaking during the entire event to render it accessible to all. Three of the organizing committee members started the meeting by honoring a prominent Italian Professor (Edoardo Arslan) who had just passed away, not with a moment of silence, but by requesting that the entire room stand up and applaud as this great man was responsible for transforming silence into sound for so many deaf individuals.

Then, the organizing committee called me up to the podium and gave me a plaque and flowers honoring me for having created the forum. I cried. Totally unexpected, it was one of those moments where it all hit me and there was Jordan seated in front of me watching everything.

Finally, the meeting began. There were emotional moments like when a father showed a video of his daughter who uses both sign and speech that discussed all of the difficult decisions he had to make as a parent lost in a world of doctors - he choked me up when his eyes got teary as he thanked his wife for always being by his side; a speech therapist discussed the importance of communication and not just how many words a child learns- she showed videos clearly defining good communication including wait time and turn-taking in a before and after video of a mom interacting with her deaf baby; a deaf woman with a cochlear implant explained the importance of horizontal interaction between siblings in the family and how deaf children have difficulty understanding idioms; I spoke about what we face every day as parents and how we need to remember to be husband and wife and not just mom and dad.

Then Jordan spoke.

He talked about a moment in his life when he had to make a difficult choice. Last year he was having difficulty in school and made the choice to change schools- to move from an easy situation academically where he was suffering socially to a more difficult situation academically in the hope of finding a better situation socially. He talked about how he loves his new school and that he is currently working on creating sculptures for a life size chess board. His message to the public was: We can choose which road we take and while it may not always be the easy road, never give up.

When my deaf child with a cochlear implant finished speaking before 250 people, I got up and hugged him. There was a moment during his speech that he couldn't find the words to say what he was trying to say, and for the first time in my life, I did not try to help him. I knew he would find the words.
And he did.

We invited Terenzio Traisci who travels around Italy giving a speech related to the "Yoga of Laughter" because we wanted to remind all present the importance of laughing during the process.

The afternoon session was dedicated to adults and the problems deaf individuals face on a daily basis. Speakers gave examples of issues discussed on the forum and offered possible solutions that we will present to the entity responsible in Italy, which did send a National representative to listen to our Meeting. An adult implanted at the age of 65 years old talked about the fact that he went bilateral to hear his granddaughter tell him stories. Another adult implanted spoke about the importance of socialization and not just communication in rehabilitating deaf adults. A gentleman spoke of his experience in a Deaf Institute growing up and how times have changed.

Throughout the applause of all individuals in the audience and the tears, both the young and old found themselves and their experiences in the presentations of the speakers. It was a tremendous success.

The only problem was that we ran out of time and had to end the Meeting without offering the public a chance to speak at the end.

A President of an association representing deaf individuals using sign language came up to me after the meeting and aggressively accused me of not having let her Deaf individuals speak and that it was unacceptable that they were not given the chance to intervene. I apologized for the fact that we ran out of time, but she continued verbally assaulting me. Luckily, someone rescued me because we really had to get out of the venue.

I digested the situation and twenty minutes later as everyone was congregating outside, because no one wanted to leave, I approached her as she was signing with a couple of the men who were part of her group. I asked, "Could you please translate for me?"
She glared at me and said, "Okay."
I said, "I apologize for the fact that we had to abruptly end the meeting, I would love to hear what you wanted to say."
One of the men, so sweetly, smiled at me and said, "Thank you for the Meeting, I learned a lot about cochlear implants. I realize that deaf people with a cochlear implant are able to communicate with the hearing world better than we are able to do with only sign language. However, there are also aspects of my life as a Deaf individual that I can share with you, and I hope that we can work together in the future."
I smiled and said, "That was the purpose of the meeting, we are here to collaborate."
He thanked me profusely.
The other signing man turned to Jordan and said, "Your mom is very sensitive with a lot of heart. She is a strong woman."
I gave him a hug, thanked him and looked at Jordan.
He wasn't convinced:-)

We still have a lot of work to do, but we are building bridges- we are transforming the virtual world of facebook into memories lived together- face to face.
And as we know...Rome was not built in a day.

Cinderella, Prince Charming and the Fairy Godmother

2013-05-05T16:10:00.003-04:00

I'm learning that once upon a time can happen more than once in a lifetime.
Unfortunately, the Prince, may not be charming forever.
At a certain point, Cinderella has to grow up, shed her rags and step into her big-girl dress.
And they both live happily ever after...just not together.

Maybe at 41, I see things through more discriminating eyes.

We lived Paris in love, caught a huge fish in Miami, played ping pong on the beach, walked the dog together, travelled Italy, took the kids to amusement parks, played cards every night and held hands all day.

I inhaled and exhaled magic.

And as suddenly as it all began, it ended.
Like abracadabra, Bye.

I believe in carpe diem.
I have made peace with impermanence.
I have no regrets, only pain and suffering.

I've come to the realization that with all of the suffering in the world, it's okay to suffer for love.

And my personal Fairy Godmother...my Mom, is saving my life one day at a time.

Proud

2013-05-02T17:54:00.001-04:00

Four years after creating my Italian blog, three years after having created a facebook forum called "Let's Face Deaf Together!- Cochlear Implant Forum, we are holding our first National Meeting in Rome on May 11th entitled "Look Who's Talking!"
Participants include cochlear implant recipients, hearing aid wearers and deaf adults and children who use sign language without amplification. I believe it could be the first Meeting ever where the speakers are just about all Deaf Individuals ready to share their experiences to enrich the lives of others. Medical professionals are attending to "hear" what we the families of Deaf children and Deaf adults have to say about the system.
The facebook forum is a place where associations from all over Italy can share their projects, ideas and goals to improve the system as a whole and offer resources to all. The Presidents of these associations will be attending this meeting.
There is a battle going on in Italy right now over whether or not to recognize LIS as a minority language, but that battle has no place in our Meeting. Our meeting is pro-family, pro-support, pro-strength, pro-community that encompasses all perspectives.
We are all co-existing on one forum. Miraculous:-)
I have always believed in choice and that each and every choice must be respected.
There are 250 seats in the Meeting and we are now at standing room only with 270 participants.
I believe that if you build it...
they will come.
Jordan and I will be speaking together:-)

I Turn Off My Hearing When I CHOOSE to Not Hear

2013-04-23T14:19:00.001-04:00

Sometimes the choice is not ours.
But all choices must be respected.
All endings bring new beginnings.
It is our past that gives us the strength to forge forward into the future.
Never let a person underestimate your strength.
And never underestimate your future.

I just got back from a Meeting in Milan. The president of the parents' association invited me to speak to a group of parents. While I was there I had the chance to meet a mom and little boy I have been following since his first newborn hearing screening refer. They started their journey in Pisa and now they're in Zurich. Amazing experience to hug the mom and hear the little boy say Ciao:-)

On the forum, one of the adults posted this: Describe your cochlear implant experience in 5 words...
Here are a couple of comments people wrote (in Italian they were five words each, in English I don't have the energy to translate in five words:-):

-My life has totally changed for the better
-My daughter talks non-stop
-To hear everything- simply Amazing!
-Adorable voices of my children (a Deaf Mom wrote this one..)
-Everyone hears in his own way
-The story of a rebirth
-To hear is to live in color

And mine for Jordan:

I turn off my hearing when I CHOOSE.

My son was born deaf, he had no choice in the matter.
Thanks to the cochlear implant, he can hear.
And now, he is the one who chooses to turn it off.
That for me is the greatest miracle of all.

Boston

2013-04-16T08:11:00.003-04:00

I try to go running every morning.
This morning I ran and thought of Boston.
I believe in marathons, stamina, perseverance and challenges.
I trust people.
If a cashier gives me too much change, I tell her.
I have had a person run up to me, because she saw me leave my cell phone on the counter.
While walking down the street I smile at people and they smile back.
I work more than I probably should to achieve goals that oftentimes seem unreachable.
It doesn't matter how long it takes to reach those goals..
I just need to cross the finish line and glance back a stronger person.

On Facebook, Nicholas Kristoff wrote:
Most inspiring glimpse here of the Boston marathon: runners who reportedly finished the 26 miles and then ran over to Mass General Hospital to donate blood.

Americans run marathons literally and figuratively every single day.

We always cross the finish line and immediately turn our eyes towards the next hurdle to overcome.

Just Stop...and Taste the Ice-Cream!

2013-04-14T08:21:00.000-04:00

Our lives revolve around hustling and bustling, so when do we actually put down our smartphones and look our kids in the eyes?
The daily grind stimulates, activates and motivates, but when do we STOP, look around and breathe?
Just do it.
Just stop, collect your kids, turn off your cellphone, turn off the car radio, drive to the ice-cream parlor of your choice
and
taste
the
ice-cream.

This is the cover of my Forum's first National Meeting: Look Who's Talking!!! (More details coming soon!!!)
This is what the Program cover says:
"Help your child to always take only one step forward. Then, give her the time to look back and realize the progress she has made. Let her know that, you too, are happy with her, so that when she turns back around and looks to the future, she will confidently take that next step forward".

Does Anyone Know Jordan- the Boy on Youtube?

2013-04-12T15:58:00.001-04:00

Does anyone know Jordan, the boy on Youtube?
That was the question a new entry posted on my forum.
For a minute I wasn't even sure she was talking about my son...but she was definitely talking about Jordan.
She wrote, "The first time I saw him on youtube, I cried. He was my first approach to the cochlear implant, he gave me hope."
Then, another member of the forum posted this: "It's true...when we found out about Chiara's deafness, they immediately talked to us about the cochlear implant. We had never heard of a cochlear implant, so we started to do some research. When we inserted the key words on youtube, we found a beautiful child with glasses who said, 'My name is Jordan Del Dottore' and we realized that anything is possible. Today, after almost one year since my daughter received her cochlear implant, when she says, 'Papa' my love, I love you", we're totally convinced about our choice".
Yesterday was an emotional experience on the Forum.
And here he is....Jordan...a couple of years ago:-)

From Mother to Daughter: Any Regrets?

2013-04-09T03:51:00.003-04:00

Posted by one of the moms of the Italian forum...

MOM

At least once in our lives, we have found ourselves eye to eye with one of those stuffed animals dropped on our table at a restaurant by a Deaf individual with a sign language card and a piece of paper that says: "I am Deaf, please buy this stuffed animal. Thank you."

When this would happen to me with my Deaf baby Alice sitting by my side at that table, my heart would break and my thoughts would drift towards her future leaving me with doubts and uncertainties regarding the choices I had made and would still have to make. I thought, fortunately, the cochlear implant exists and my child will not grow up isolated from a world filled with sounds...

Then, however, I would think to myself: and if one day she hates me for having made that difficult choice to go forward with a cochlear implant that has enabled her to hear through a lot of hard work....and if she hates me because her entire life will be an uphill battle?

Last night at the restaurant I relived that same scene from many years ago..........yet this time, sitting in front of me was my grown up daughter. She was watching me and said,

DAUGHTER

"What's the matter Mom? You just got really sad..."

I explained to her my feelings and fears that I still have for her and her future. She looked me straight in the eyes and said:

"What daughter could hate a mother who chose to give her wings so that she could fly higher?????"

I posted this here to try to reassure all of the mothers of newly diagnosed babies who find themselves in the delicate position of having to make difficult decisions for the future of their babies....

-M.M. Rossi

Second Printing of RALLY CAPS....With Jordan's Letter Inside! The book and where it went from there...

2013-04-08T04:51:00.000-04:00

THE “SECOND PRINTING” ALSO INCLUDES INTERIOR TEXT ADDITIONS: “ABOUT RALLY CAPS” AND “JORDAN’S LETTER” IN THE FRONT
AND “BASEBALL GREAT’S BIOS,” “A GLOSSARY OF BASEBALL TERMS,” AND “THE RIPKEN WAY,” NEW CHAPTERS 24, 25, AND 26.

While this is happening in the USA, my forum in Italy that came about following the printing of RALLY CAPS in Italy is about to hold its first National Meeting in Rome.
It has been an intense, busy and satsifying six years.
Above all, Jordan and Sofia have been by my side the entire journey.

My Dad recently created a blog on Wordpress where he posted my first public speech from NHS 2008 in Cernobbio- Thank you again to Prof. Ferdinando Grandori who has become a dear friend. My first time speaking and there were 1100 leaders in the field of Audiology in that room. One week ago I received an acceptance letter to speak at a Congress in Istanbul regarding the work that we have been doing since that day in 2008. Here is the speech:-) Thanks Dad!!

BLOG: Monday, June 23, 2008

Newborn Hearing Screening Conference June, 2008 – My Speech

Here’s my speech! I will say this – at a certain point, I started shaking, like a physiological reaction or something. I began fairly calmly and suddenly, I got the shakes. Luckily, I started the PowerPoint presentation at that moment, so I managed to pull it back together, but it got a little sticky there for a minute. I don’t know that I followed it word for word, but the jist was this:
INTRO:
Good Morning. My name is Jodi Cutler. I am an American Mom living in Tuscany. My 11 year old son Jordan was born profoundly deaf, wore hearing aids for eight years and three years ago was implanted in Pisa by Prof. Stefano Berrettini with Cochlear’s Nucleus 24. His first processor was an Esprit 3G, and he currently wears a Freedom. All of our expenses have been covered by the Italian National Healthcare Service.
The cochlear implant changed our lives. From the moment of activation, Jordan flew, grew and found his voice. Because he found his voice, I was able to raise mine regarding our experience. My father and I wrote the book RALLY CAPS, and incorporated a strong deaf character with a cochlear implant just like my son, because every child has the right to find himself in literature. RALLY CAPS has been endorsed by Cal Ripken Jr., Brooks Robinson, and Curtis Pride, the only Deaf Major League Baseball baseball player. It was published in the United States and has just recently been published in Italy. At the book presentation two weeks ago, I invited the Medical Professionals involved in helping our child, each and every one of them not only attended the presentation, but they spoke.
The following is the dedication in the Italian Version of Rally Caps to all of the medical professionals and teachers who have assisted us in raising Jordan’s voice:
Placing your child in the hands of other people and having to trust these people with your child is the most difficult thing for a mother. When life requires that you ask for the help and support of persons outside of the family, you suddenly find yourself in an extremely vulnerable position. Finding professionals willing to offer all of their efforts and competencies, who moreover demonstrate the ability to love your child in such a way as to contribute to his growth is…extremely rare.
*Slideshow*
I traveled ten hours, changed trains four times and sweated my way to a hole in the wall of a hotel room with a bathroom in the hall to provide you with this message: There is NO greater ally in making your job a success than the Mother of the Deaf Child you are assisting. I am here today, based on my experience here in Italy, to provide you with a Mother’s perspective.
PEDIATRICIANS:Jordan was born in Baltimore and was extremely alert and obviously intelligent. There was no newborn hearing screening program at that time. Because Jordan was so intelligent, we questioned our pediatrician numerous times regarding his lack of language expression, he wasn’t babbling at all. Each and every time, my pediatrician called me neurotic… Motherly piece of advice number 1: LISTEN TO A MOTHER’S OPINION, THERE IS NO ONE WHO KNOWS HER CHILD BETTER.
As an American Mom thrilled to be living in Tuscany, I jumped off the airplane with ten month old Jordan slung over my shoulder ready to dive into some Chianti and pecorino cheese. One month after we settled into our new small town Grosseto lifestyle, we took Jordan for his first check up with our new pediatrician. Dr. Giovanni Lenzi performed a standard Boel test which involved distracting Jordan with one hand and ringing bells with the other- to which Jordan had no reaction. We were sent to Florence where they performed an ABR that indicated Jordan’s profound bilateral sensory-neural hearing loss. However, try to imagine the scene in that office…
AUDIOLOGISTS
When this audiologist came to speak at my book presentation a week ago, she commented on how different I was compared to that first day that I met her. I was a 25 year old American Mamma wearing cut-off jeans shorts, very broken in tennis shoes who didn’t speak a lick of Italian. What I didn’t tell her, because the most important thing in our relationship was the fact that she loved Jordan, was how angry she made me the day she gave me that news of my son’s deafness. She looked right through me…and spoke to my mother in law. And when I intervened by means of my husband and said, you need to talk to me, I AM THE MOTHER, she began calling me “dear.”
Motherly words of wisdom number 2: When you give a parent news of their child’s hearing loss, look them directly in the eye and never look at them with pity. If that mother is Hispanic or deaf, make arrangements for an interpreter to be present because the news you give that mother will change the rest of her life.

SPEECH AND LANGUAGE PATHOLOGISTS
Armed and dangerous with hearing aids, next stop Auditory-Verbal Therapy four times a week. Advice Point 3: This one’s for the Speech and language Pathologists, and Auditory-Verbal Therapists: Encourage that Mom who now assumes a new role as Mom/Teacher, focus on the positive progress made.
Imagine your typical playground scene, it is natural for a mother to teach her son right from wrong, how not to climb up the sliding board or not to push the child in front of him…it is not natural to have to shove language down your son’s throat “Oh, look, there’s a toy train, can you say Toot Toot? Oh, look that little girl has a toy car, Brrrrrooom, brrrrooom!” This dual role of teacher/mother blew me away, I am a teacher, but I have Never had a student as stubborn as my son. My speech therapist explained that my son’s temper tantrums were due to his frustrations regarding his inadequacy in expressing himself; he threw a lot of temper tantrums, so he must have been extremely frustrated.
It was my son’s frustration and the fact that he was falling behind socially that led us to choose the cochlear implant.
COCHLEAR IMPLANT TEAM
After a couple of opinions and research we found Santa Chiara Hospital in Pisa where Dr. Francesca Forli answered every single one of my fifty questions calmly, objectively and sincerely. I had found my implant team. Prof. Stefano Berrettini performed the Implant Surgery leaving Jordan’s residual hearing intact. He provided me with his personal cell phone in case of emergency and called a couple of times to check on Jordan’s progress, note Jordan’s operation was the day before Christmas. I am not asking you to give up your personal lives for your patients, however it might be a sort of a human touch to delegate a phone call to a member of the implant team to find out how that child is doing…and how that mom is doing. A calm mother means a calm child.
Motherly request number 4: Go above and beyond the call of duty every now and then, it goes a long way in establishing a collaborative effort with the mother of that child, which will only make your work more successful.
The cochlear implant enabled my son to become independent. Our journey has not been easy, but it has been extremely rewarding.
SUPPORT NETWORK
After spending ten years without support, I found the Pediatric Cochlear Implant Circle a community of over one thousand parents at various stages of the cochlear implant journey. Some parents use ASL as a bridge or in conjunction with spoken English…other parents strictly use the Auditory-Verbal approach. We exchange information regarding the latest technology and offer psychological support having been there and done that. I then joined the blogging community, which has led to a productive dialogue with the Deaf Community. Hearing mothers of Deaf babies with CIs are making a difference in opening minds within the Deaf Community.
Mom’s Final Request: Provide that Mother with resources to help her through the lifelong journey with her deaf child.
I would like to share a little poem by Shel Silverstein entitled
Listen to the Mustn’ts
Listen to the Mustn’ts, child,
Listen to the DON’TS
Listen to the SHOULDN’TS
The IMPOSSIBLES, the WON’TS
Listen to the NEVER HAVES
Then listen close to me-
Anything can happen, child,
ANYTHING can be.
We are an example that Anything is possible. Empower that mother by validating her concerns, looking her directly in the eyes when you speak to her and providing her with resources that offer support and guidance… and you will save that child.

Shutters

2013-02-27T09:37:00.003-05:00

Okay.
I am waiting.
But while I wait I am involved in a thousand things so that the limbo becomes a juggling act of my patience vs. my moving forward with ideas.
The dream is there hovering.
In the meantime, life has been throwing some eggs.
Little tests that I'm not sure I'm passing, but I'm trying.
Two weeks ago in Rome, I put a politician in his place.
I gave him the stare-down when he tried to answer a phone call during my presentation.
I put the entire room on pause.
I felt like Leeanne Seaver.
He paid attention the rest of the time.
At the end of my presentation on what it is we do as parents of children with hearing loss and why we are so important to the process, I apologized for not letting him go before me as he had requested and thanked him extra-kindly for waiting through my presentation.

Yesterday I had a moment.
Sofia's father forwarded me an email from a boy who asked Sofia via email if she could come over his house and play.
I remember when a boy asked me to come over his house and play...she's not going:-)
I had a my-kids-are-growing-up-moment.
So, this morning I spent 8 minutes suffering through Sofia's morning breath to snuggle her up and bite her cheeks.
It's going too fast...

Jordan's first IEP meeting...

2013-01-30T13:06:00.000-05:00

We had Jordan's bi-annual IEP meeting yesterday and for the first time since he started school at age 3, he participated.
After asking the CI Circle parents their experiences regarding allowing their children to participate in the meetings, I realized that in the USA it's common for children to participate; however, after asking a group of speech therapists at a course where I spoke in Pisa last Saturday, I realized that in Italy, it just doesn't happen.
Yesterday in Grosseto, it happened.
At an IEP meeting the parents, teachers and child psychiatrist are present. We've known the child psychiatrist since Jordan was three and he has been a fundamental part of our journey.
He smiled the entire meeting.
The teachers smiled the entire meeting.
Jordan talked about how he thought school was going.
The teachers asked him questions about what they could do to help and what his concerns were.
They told me that he participated regularly in class and followed the lessons attentively.
Everything went really well, except for the fact that he's failing English.
Smile.

Adrenaline

2013-01-28T06:36:00.005-05:00

Some people jump from an airplane and feel the rush at the moment they tug the cord of the parachute.
Some people step in front of a podium, microphone in hand.
Some girls put on a tutu while others run the bases until they touch home plate.
When you're a sixteen year old guy, it can be the girls putting on makeup at the back of the classroom or the smell of perfume.
It can be that moment where you find the courage to speak, when you are unsure of exactly what may come out of your mouth.

It comes in all shapes and forms at any age.
If you aren't sweating, you aren't living.
Sometimes we are standing on the edge of "right" or ""wrong", "up" or "down", "do" or "don't".
And if you've gone as far as that edge, don't look back.
Just jump.

Bye Mishka:-)

2013-01-25T11:47:00.000-05:00

"Last week i took down my blog down for good. It's been inactive for some time, but now it's gone. I've saved all the posts. some day I will donate them to a deaf studies program. blogging had been an enriching experience. I've gained invaluable information and formed countless friendships. while looking at posts since 2006, I can safely say that my perspectives on certain issues have changed since I began blogging.

...I'm not ruling out the possibility of resuming blogging and deaf advocacy again later on."

The end of an era.
I totally understand.
Mishka's blog taught me a great deal and gave me many opportunities to reflect on the choices I made as a Mom during that time period. She gave me an education that I am still using today...actually the other day on the Italian forum I spoke about my experience blogging on Deafread and how our constructive dialogue led to an evolution in attitudes.

Five years ago I began blogging, I was married, in crisis and alone. It's incredible how writing and putting your heart out there for everyone to read can help you understand yourself and help you work through making choices. It's amazing how many people are living what you are living, or something similar at that precise moment and how many people you can touch just by sharing some pain.

I have learned that the more you give, the more you grow.
We're still here growing in Tuscany.
I'll be back soon.

I love my son

2012-12-04T09:06:00.000-05:00

I wish that I could give him my assertiveness to lend him the strength that he would need at that specific moment where he lowers his head to look insecurity in the eyes.
For just that precise moment when he chooses to ignore or shake his head and suffer in silence, because HE knows right from wrong but the asshole in front of him does not.
Only five minutes with my journey of indignation to give voice to that forced growth process that he is now enduring.
Another dumb-ass ignorant kid with probably a lot worse of life than my son has had to live, who takes it upon himself to make fun of my son who is only trying to go to school and laugh.
An hour in the Principal's office, an hour of explaining what needs to be done. One of the teacher's said, "I can't believe that, I have not seen that, etc. Wait, I do remember a couple of weeks ago the Italian teacher wanted to see him and his classmate went to tell him that the teacher was looking for him. But Jordan didn't believe him. He thought his classmate was playing a joke on him. But the Italian teacher really was looking for him."
Well now, I guess that confirms what we've been saying. NOW WHY WOULDN'T JORDAN TRUST HIS CLASSMATE AND GO DIRECTLY TO THE TEACHER?

Another sleepless night.

By the way, they weren't convinced until my companion stood up in front of the Principal and said, "We have been talking about this problem for the past 50 minutes and we never even discussed how the two boys have been harassing Jordan."
Dino stood up, looked them in the eyes and said: "Wwwwwwwwwwwhat ddiiiiiiiiiiid youuuuuuuuuuuu sayyyyyyyyyyyyyyyyyyy?"
You know, in that way that a hearing person makes fun of a deaf kid.
They stopped looking for excuses.
We'll see what happens next.

The Power of Social Networking to Link Patients with Medical Professionals

2012-11-26T08:06:00.001-05:00

For four years, I have been speaking at Medical Conferences to share our experience with Jordan's hearing loss, but recently a different type of conference has been spontaneously popping up as an initiative linked to the Italian forum I created three years ago.
What is currently happening in Italy is that Medical professionals involved in hearing loss are attending conferences sponsored by Parent Associations throughout Italy. These medical professionals are sharing their knowledge at these meetings without receiving credits or payment, because they believe in what we have created. And they are listening to what we as parents and ci recipients have to say about the journey and a variety of different experiences.

The collaboration is resulting in a network of families, recipients and professionals that results in quicker contact, more resources and pressure on the CI companies to create better products quicker. The more we as families are informed, the greater our demands become.

Five years ago we decided to basically make our life public to try to help other families in our same situation. Yesterday, a mom stopped me to tell me that when her daughter was diagnosed at two years of age, she surfed the internet for information and found a video of Jordan talking about his ci. She said listening to him talk gave her hope. Her daughter is now four years old and has bilateral cochlear implants- she's doing amazing. Five years ago, we created a community of ci bloggers. I met Aiden's mom Tammy along the way, and yesterday I talked about their journey and a comment she made: there are three groups of people I always encourage families new to this journey to find - those who walked before them, those who walk hand in hand with them, and then when the time comes, those who walk behind them.

During the lunch break, the mother of a forty year old with profound hearing loss pulled me aside to thank me for my presentation. She said forty years ago, no one spoke openly about disability and she had had no one to help her in her journey. The father of a forty-three year old bilaterally implanted after 40 years of hearing aids said the same thing. Their children were labeled led a restrictive life due to prejudice and discrimination. No one talked about disability other than to say, "There's the Deaf child".

Times have changed.
Times are still changing.
Raising our children's voices begins with our ability to raise our own collective voice, which is becoming stronger.
The critical moment when we start raising our voice begins on the playground when a curious child walks up to you and says, "Hey, what are those things in your child's ears?"
And you respond.

What will you be when you grow up?

2012-11-20T05:20:00.001-05:00

My first course was an emotional experience, especially because Jordan was with me.
I divided the day into two parts: the morning session with teens and an afternoon session with the families of babies-children-teens with profound hearing loss.
The theme for the teens was: Who will I be when I grow up?

The various slides and presentations served to motivate the teens to consider all aspects of their identity. I showed a couple of optical illusions to reinforce the point that not all in life is as it seems and that oftentimes we need to alter our focus to truly see all of the possibilities. What resulted from our discussions was that the teens did not totally consider themselves as Deaf, nor did they consider themselves as "Hearing". We talked about "Tweenersville", a concept I first discussed on this blog four years ago. They feel a certain peace in Tweenersville, especially during our session, because every single person in that session belonged to that land in the middle between silence and sound.

I asked each of them to turn off their amplification, then I distributed post-its to each person and asked them to describe their sensations. Here are some of their responses:

When I turn off my ha/ci, ...
I see everything that surrounds me with different eyes...
I feel peace/apprehension
I don't hear anything
I feel at a disadvantage and alone
I feel like I am no longer a part of this world, I try to hear as much as possible even though I know that if someone speaks to me, I can't hear them
I feel like I'm in another dimension where there is nothing but vibrations
I am in my world of silence where only I exist

and then...
When I turn on my ci/ha, ...
I hear sounds, voices, footsteps
It seems like my mind opens because I have returned to reality
I feel relieved because in this way I can be a part of everything that surrounds me and I truly feel like I am a part of this world
I feel happy, a person like everyone else
I feel free to hear the sounds and melodies of the world.

We did other activities, but this is just to give you an idea of how deep the discussions got during that session. The group of teens were extremely united among themselves thanks to the commitment of the Association who invited me to hold the course. It is so important to give our kids the opportunity to meet other children living similar experiences...not once in a while, but often.

After lunch, I met the families. I presented a Powerpoint "It isn't a sprint, it's a marathon"- the concept Naomi Higgs has shared since the beginning of the Ci Circle. I also used an article on disability that a CI Mom suggested after my request for resources. The article states these 7 fundamental points/moments that we all experience during our journey:
1. I am tired.
2. I am envious.
3. I feel like I'm alone.
4. I am scared.
5. Could you please stop saying "Poor child".
6. I am human.
7. I would like to speak about my child / It is truly difficult to speak about my child.

All of the parents could relate and those further along the path spoke of how exceptional their experience with their children has been. They spoke of the strength they never realized they had, and when the mother of a 4 month old stood up to say, "I hope I will have the strength to help my baby like the rest of you have had..." there was a collective response: "You will find that strength."

Flooding in Tuscany

2012-11-13T06:42:00.003-05:00

It hasn't rained in I don't know how long, so the combination of heavy rains with a lack of attention on behalf of the politicians of Grosseto in cleaning the sewer system left Grosseto slammed with high water and flooding. For the first time in the 15 years I've been here, schools were c l o s e d!

So, this morning we took a family field trip to assess the damage done.
Sofia broke out her notepad and Jordan actually left his room to have a look at the Ombrone River next to our home.

Request for Resources: A Full-Day Course offering Parental Support

2012-11-05T05:47:00.000-05:00

It's been a long time.
Jordan's in his third year of high school- in Italy they go for five. He's thinking of moving back to the States to avoid that extra year:-)
Sofia's in her last year of Elementary School.
I fell in love...again.
2012 is just zipping right along.
And while we are constantly evolving, crepes with Nutella accompanies our growth (in all senses).

In two weeks I'll be "teaching" my first parental support course. One of the parental association presidents asked me to meet with two different groups. In the morning, I have a group of 20 teens, and in the afternoon a group of parents and grandparents. The teens will be watching the children duing the meeting with the parents.

In the past five years I've collected a lot of information. I've been concentrating on the medical community and trying to offer refresher courses so that they would know how to help the families of children with hearing loss in their journeys. I've been invited to medical congresses, so that now I have access to all current information in the field.

But what it all comes down to in the end is still my experience with Jordan.
That's what I'll be bringing to that course.
And I hope to close some gaps for the parents and motivate the adolescents.

Any suggestions?
If you've been to a parental support course, what made the greatest impact on you?

The River

2012-09-12T10:14:00.000-04:00

Sofia kicked me in the face when I tried to wake her up this morning for her first day of school.
Jordan gave me the elbow when I nudged his long and lanky teenage tall self for his grand wake up at 7 am, that he hasn't seen since June.
Beat me, slam me, smash me...SCHOOL IS BACK IN SESSION!
I'll miss having them around 24-7, but their young minds must be formed; they must study; do arithmetic; run around at recess and
GET OUT OF THE HOUSE!
They're taller, bigger and even more demanding than ever.
And they're mine.

This morning I participated in a webinar on fundraising and social networking.
Now that the forum has reached 1300 and initiatives from forum members are starting to pop up all around Italy, it's time to start thinking about creating an Association- one strong entity that offers a greater foundation for all of the smaller realities. So, I've been investigating exactly what type of Association. Bureaucratic things terrify me, especially in Italian. However, I don't have faith in the predominantly oral approach Association, and totally have no faith in the predominantly Deaf Community Pro-Sign Language Association, so I'd like to create an I-really-don't-care-what-methodology-you-use-as-long-as-your-child-is-happy Association.
I'm tired of nitpicking and name-calling.
I just want to see more and more initiatives, gatherings, projects and happy families with thriving children.

The head of Neonatology at the hospital where I live contacted me and asked me if I belonged to an association that had 10.000 euro to purchase an otoemissions-aabr machine. I said no.
But after this webinar, I've been thinking.
Maybe I could pool my resources and try to find a way to fundraise 10.000 euro.
Maybe.

I don't like the maybes, they're excuses and passivity.
But, I'm having trouble finding the click.
I'd like to create an association.
I'd like to create an On the Road course for parental support.
And I'm stuck.
The strange thing is that while I'm stuck, suddenly everything and everyone around me is moving, so I'm being pulled down the river.

It's an extremely powerful sensation.
Everyone's taking me with them.
And we are still moving forward.

The Hear and Now

2012-09-07T19:24:00.002-04:00

A long, long time ago I read the book "Just Who Will you Be?" by Maria Shriver.
My dad sent it to me during the crisis period when my marriage went wrong.
I found it when painting my house for the first time in 12 years, as I started cleaning the stuff from above my computer.
My dad wrote: "You may choose to use some of her poetry in your own speeches in the future. Or personally, it may help you through this phase of your life, this crisis, and this growth period and help you find out "Just Who You Will Be."

I ran into my psycho-therapist from four years ago, who I went to during that crisis time to try to figure out who I was, what I wanted and how to save myself, my family and my kids. Suddenly life was taking me down another road and I didn't know myself well enough to put myself back on track in the land of comfort and family and love.

Everything was changing. I was changing.
Sometimes, as much as we would like to avoid the change, we just flat out can't.

When I first went to the therapist, I was in the phase where I had to corner my CI surgeon in a room to explain to him my objectives for creating a questionnaire on Pediatricians' knowledge of Newborn Hearing Screening, and that he needed to trust me. I literally closed him in an office upstairs in the hospital and told him I needed five minutes of his time to explain my ideas. At the end of the five minutes, he kind of stuttered and said, "Ok."

My last therapy session...was just before I went to speak at the Fimp Congress in Rome before 1,100 pediatricians and he told me to draw an imaginary circle and throw all my fears outside that circle.

I did.

Four years have passed since that Congress in Rome, when I saw him at the supermarket, I stared at him intensely before it finally hit me who he was.
And then, it hit me who I am.
I'm still not sure who I'll be, but I know who I am.
It's been an interesting four years...

15 Years Later...Jordan's Journey Led to Dr. Niparko at Hopkins

2012-07-16T17:44:00.002-04:00

Two months ago I participated in the Family Centered Early Intervention Congress in Bad Ischl, Austria, where after 15 years of Jordan's journey in Italy, I had the fortune of meeting Dr. John Niparko. We were part of the same International Consensus Meeting on Family Centered Intervention. Actually, I sat next to him.
Who would have ever thought that the girl from Baltimore would meet the world famous CI surgeon of Hopkins at a Congress in Austria?
I grilled him with questions during that Congress, we talked about bilateral cis, an Italian situation, how early he implants, how long before totally implantables would become available and hair cell research so that I could take the information back to my Italian forum. He calmly answered all of my questions despite his jetlag and was absolutely the nicest person to have waited fifteen years to meet.

Okay, here's the deal.
I have created a network in Italy. I place families in contact with Italian surgeons on a regular basis. They ask me for help and I am so happy to be in a position to help them.
Dr. Niparko gave me his email address during the meeting and told me if I had any questions that he would be happy to answer them, but that I might have to wait for a response due to his busy schedule.

I arrived in Baltimore three weeks ago.
Jordan's journey has been exclusively Italian. We have always trusted our doctors in Pisa, but I had Niparko's email address burning a hole in my wallet.
What would you have done as a good American mom living in Italy with a world famous CI surgeon twenty minutes from your house?
My son's hearing is the most important thing. We just upgraded to a CP810 and he seemed to be talking louder than usual.
I sent the email.
Niparko responded.

We just spent the day getting mapped and taking a tour of The Listening Center.

Dr. Andrea Marlowe mapped Jordan.

She said his Italian mapping was very good and she just tweaked a couple of things that have improved Jordan's quality of hearing. She talked us through the entire process; Jordan did the Ling sounds without missing one and repeated some words in English without any problems.
An amazing experience after having lived every moment prior in Italian.
My mom came with us and after 15 years, she was finally able to ask questions to a Doctor (THE Doctor) who spoke English.

Dr. Niparko shook hands with Jordan, showed us around the Listening Center, answered my Mom's questions and told Sofia she was beautiful. He handed me the Listening Center information packet that I'm going to study and I showed him the Pediatric Cochlear Implant Circle yahoo support group;-)...been waiting four years to be able to do that.

I'm still kind of emotional about the whole thing.
You never know the places you'll go. You just always want the best for your child.
I am thankful for Italy, and I am thankful for Niparko.
I am blessed.

The Miracle of Disney

2012-07-13T09:25:00.003-04:00

Once upon a time on the Pediatric Cochlear Implant Circle a Mom asked whether or not people on the forum request the "Disability Pass" at Walt Disney Theme Parks.
My reply was no. The issue was whether or not I considered Jordan as disabled, and I've never considered Jordan to be anything other than Jordan with a hearing loss.

My dad and I decided to take the kids to Disney, we'd been planning and saving to be able to do so. The big day was getting closer and I couldn't decide between Animal Kingdom or Hollywood Studios, so I made the classic Facebook appeal. The consensus was for Hollywood Studios and during the thread, Paula suggested that I inform myself once at the Park regarding cc services available. She didn't say, "Go get the Disney Disability Pass!" She said, "They have excellent services available that will improve Jordan's experience at the Park."

So I did just that.

I walked into Guest Relations at Hollywood Studios and I explained that Jordan has a hearing loss, that I'd heard Disney has captioning available on rides and shows, could he please advise me. Justin was extremely nice, happy, a pleasure and a half to speak to. He pulled out a "Guide for Guests with Disabilities" that was the same map as the one they give out in the park, only next to each ride and show was indicated what type of captioning was available. He explained:

Assistive Listening: utilizes Disney's Handheld Device to amplify sound through headphones or induction loop at specific attractions. Devices are recommended for Guests with mild to moderate hearing loss. Available at Guest Relations and require a $25 refundable deposit (must return item on same day for refund).

Reflective Captioning: (didn't work in the only place we tried it, but they were so nice to set it up in a front row seat) Available at many theater-type attractions, utilizing an LED display to project desired captions onto an acrylic panel positioned in front of you.

Handheld Captioning: (we used this often in Hollywood Studios, less in Magic Kingdom) Utilizes Disney's Handheld Device to display text in locations such as moving attractions. Available at Guest Relatoins and requires a $25 refundable deposit.

Video Captioning: Caption-ready monitors are designated with a "CC" (The Toy-Story Ride had this option) symbol and can only be activated by remote control.

Written aids: (At one of the shows, they asked us if we needed a script of the performance) Guest Assistance Packets containing dialogue, narrations, flashlights and pen and paper are available at or near the performance areas or entrances for most shows and attractions.

Telephones: Pay phones equipped with Text Typewriteers (TTYs) are available at designated locatoins throughout the parks.

I gave Justin my $25 deposit and he handed me a "Guest Assistance Card". The Guest Assistance Card enabled us to use an alternate attraction entrance where available and to sit in the front row of theaters or ride vehicles where applicable. Basically, we used the fast pass lane for all attractions.

We used the card.
Always.
And that made all the difference.

When I got the handheld captioning captioner and the card, I explained to Jordan that these were services that Disney made available to him because of his hearing loss, so that he could enjoy the Park at the highest level possible.
He smiled this amazing smile, a totally satisfied smile.

I'm going to write this here, because it was such a bizarre sensation. At one of the rides, I can't remember which one, we actually entered a disability line and we passed in front of the non-disability line. Our line was filled with wheelchairs and families pushing those wheelchairs. I glanced at the really slow moving line as ours pushed ahead and for some reason, there was justice in the world at that precise moment. I actually got a little choked up.
It was reverse justice. Like things were finally EASY for us and difficult for everyone else. I've never had that sensation of self-pity or why us-ness, but the difference in accessibility at that precise moment was switched. And I felt it.

We kind of did another thing that was probably totally illegal and unacceptable.
I don't do roller-coasters or stomach-drop-through-your-mouth types of things.
Jordan does.
So, I would accompany him to the front of the line to get on the ride. We found an amazing Mexican baseball team his age, and he made friends with them during the line. Our pass allowed four people to get on a ride with Jordan, so we kind of offered another ride to three of the team for the next three rides.
Yep...making memories:-)

Thank you, Disney....

Roots

2012-06-26T22:09:00.002-04:00

I love trees. Especially all the trees that surround my house.
They are just so tall.
Once upon a time there were two enormous trees with strong roots that held a hammock between them and Jordan swung on that hammock when he was a baby until he was about five and then the hammock broke and the tree got too big so they had to cut it down.
But the stump is still there.
Every time I see that stump, I remember the hammock and how Jordan swung on that hammock when he was a baby.
I sat in the chair, drank my water bottle and looked up in the sky at all those tall trees.
I was surrounded by green topped off with blue and a shot of whipped creamy clouds here and there.
Damn those trees grow to be tall.
I've never actually climbed a tree, I just like that protective feeling the leafy branches give you.
Zero humidity, breeze blowing and blue skies up ahead.
No limits.
Damn it's good to be home.

You Say Goodbye and I Say Hello...

2012-06-24T23:20:00.000-04:00

Left uppercut to the jaw, totally grilled, completely unforseen.
I'm not alone to deal with it this time, I'm home..
I could have dealt with it alone, but see, I don't have to because I'm home.
I can hold Sofia's hand, give Jordan a kiss on the cheek and have a margarita with my mom.
Amazing concept, being able to deal with an obstacle with your family physically present.
My mom and I went to see a concert at Pier 6, Rain.
We made friends with a woman who must have had about 6 beers in a row.
We learned that her name was Shelley, she had been married 9 years, she loved the Beatles, went to the U2 concert and paid 180 dollars for tickets nine rows back from the stage. She said she'd been married five times and that I was beautiful.
My mom and I danced to Let it Be.
Sofia and Eddie came to pick us up after the concert, and when I got in the car, Sofia asked, "Mommy did you guys have fun?"
I gave her a kiss and said, "Yeah, we really did".
Sofia kissed me back and said, "Okay, Grandpa...house sweet house!"

Home

2012-06-23T21:52:00.000-04:00

Home is a state of mind, but actually sleeping in the bed I grew up in, is an emotional experience.
Finding time to breathe, sleeping in the same room as my kids and walking every morning with my mom, up and down a street framed in really tall trees...is an emotional experience.
Leaving behind someone you love, only to find that they will remain behind..is too much of an emotional experience.
Jordan's 6'2" tall and is wearing a brand, spanking new CP810!
Sofia sings in the shower and flirts with waiters.
And I am back on my blog.
Wiser...than I was a year ago.
I think I've been unblocked. It's amazing what some good quality suffering can do for a girl.