I love my son

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

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?

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

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

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

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

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

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

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

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...

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

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.

Carol Brady

When I became a mom I had no idea how to change a diaper. Jordan wouldn't latch on and I returned to work after six weeks. It was not an easy beginning.
Somehow, through all the chaos, mistakes and exhaustion, he still recognized me as his mom.
It took him eighteen months to say Mamma, but it didn't matter- from the moment of his diagnosis, I was his Mamma. How cute he was dressed, showing him off in our walks to the park and worrying about how much he ate no longer mattered, we were on a mission for his life- from age 12 months.

Sofia was born independent, she taught herself to sleep in her own bed through the night and was potty trained at 15 months. For a certain period of time, she called me her daughter:-) I put a stop to that, but it kind of gives you an idea as to her level of maturity at an early age.

Two days ago we had an IEP meeting for Jordan. 10 Professors, a psychiatrist, Luca and me battling for Jordan.
Four days ago I took Sofia to talk to a child psychiatrist to make sure she was okay with all the changes happening around her. He told us she's okay, but Luca and I are going to speak to him to make sure we're okay with all the changes happening around and inside us.

We can't always predict what's coming around the next curve and we can't always escape the blow, but as mothers we can certainly try to soften it and admit it's there.

Throughout everything MY MOTHER is just a phone call away. I don't always agree with her advice, I don't always take it well, but it's there. Her advice, her love is ALWAYS there.

Happy Mother's Day to all the Moms who are human, who make mistakes, who cook, clean and iron...and to those who don't make mistakes, who don't cook and who don't clean and never iron....because at the end of the day when you realize you've left him in a dirty diaper for way too long...and you feel like the worst Mom in the world...you change that diaper, give him a bath and extra snuggles.
And he snuggles you back.