“AIN’T NO MOUNTAIN HIGH ENOUGH” – from AN AMERICAN MOM IN TUSCANY: JORDAN’S COCHLEAR IMPLANT STORY CONTINUES!

OCTOBER 6, 2013 JODI’S BLOG:

I began writing this blog five years ago for two reasons: I wanted to share Jordan’s hearing loss journey with other parents, and writing was a cathartic experience that enabled me to heal things I never knew needed healing.

Naomi Higgs, co-founder of the Pediatric Cochlear Implant Circle once wrote: “It’s not a sprint, it’s a marathon!” No truer words have ever been said in regard to raising a Deaf baby.

I remember when Jordan was about two years old and wore hearing aids. I took him out for some ice-cream in the center and we stumbled across a Rock band. He pointed his little finger at the musicians playing and indicated that he wanted to get out of his stroller. He stood there for about thirty seconds, then his little legs started moving and he did this funny squat dance to the beat of the song. I started crying, my baby could hear music with his hearing aids. We danced there for a good twenty minutes, then we went home.

I wrote about how his pre-school teachers told me not to send him to Elementary School because he was violent and could hurt other children. Jordan was extremely slow to learn new vocabulary, he had very poor comprehension and even poorer expressive language skills. I told those teachers that he was frustrated because he had difficulty communicating, but he could read and he was going to Elementary School.

Jordan got his Cochlear Implant when he was in 4th grade.

The CI gave him access to spontaneous language: he felt closer to his peers, his frustration decreased, he began learning to speak English.  Jordan spoke on the telephone and heard our voices.

Jordan went to a Middle School specializing in Musical Education. He sang in a choir and learned to play the Classical Guitar.

When I ran into difficulty during the first two years of high school and was considering moving him to a more difficult educational setting, my CI Mom friend, Paula said, “NEVER set limitations on your son, ALWAYS strive for more. His hearing loss is only one part of him, he can do ANYTHING he sets his mind to achieving.”  Jordan chose to change schools, conscious that he was choosing a more difficult academic path. And he is doing just fine.

Between Italy, the USA and Australia, I am part of a global Cochlear Implant Community. I use my experiences and network to help others at all points of the journey, just as I learn from families who are further ahead of us on the path. This type of CI Community support is fundamental to ensure that our kids remain kids, as well as to safeguard our own well-being during the process.

I am proud and honored to say that Cochlear EMEA has recognized the importance of a Mother’s Voice in the journey that so many of us travel, and they have offered me the opportunity to serve as a Consultant to Cochlear Europe,  Middle East, Africa in regard to communications and relationship  management with recipients and candidates and their parents and other relatives.

Three continents of families.
One family at a time.

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PROUD

JODI WRITES IN HER BLOG “AN AMERICAN MOM IN TUSCANY….JORDAN’S COCHLEAR IMPLANT STORY”

PROUD

MAY 1, 2013:

“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:-)

 

15 Years Later…Jordan’s Journey Leads to Dr. Niparko at Hopkins

Posted on Jodi’s Blog: An American Mom in Tuscany: Jordan’s Cochlear Implant Story

Monday, July 16, 2012

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.

Dr. Niparko shook hands with Jordan and showed us around the ListeningCenter. 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.

FROM JODI’S BLOG: NHS 2008 CONVENTION SPEECH

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

AND RAISING THEIR VOICES: INSPIRATIONAL EXPERIENCES IN DEAFNESS

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.

 

Jodi Michelle Cutler

JODI’S BLOG: PREPARING FOR THE NHS 2008 CONVENTION

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

AND RAISING THEIR VOICES: INSPIRATIONAL EXPERIENCES IN DEAFNESS

BLOG FROM June 17, 2008-06-17

 

NHS 2008…Here I come! Packing, packing, practicing my speech and packing. I’m lugging fifty books in two different languages, three pairs of shoes, and two outfits for each of the three days I’ll be there. Of course two changes of clothes really means four a day, because a woman must have the option to choose. Ten hours on the train should be enough time to memorize my speech, which by the way the organizer who is my new best friend, told me is touching and inspirational. (After I had to cut about three pages…got a little bit long-winded)*smile* I have already been invited to the VIP cocktail hour tomorrow night; I’m telling you I love this gentleman. After a ten hour train ride, I will be ready for some serious sipping.

I’ve broken the speech into sections regarding experiences lived with our Pediatrician, Audiologist, Speech Therapist and Cochlear Implant Team. My favorite part is explaining how to understand Deafness, but I’ll post the entire speech when I get back.

You know, just like Val wrote about in her Maw Maw post, I never prayed to God to cure Jordan‘s deafness, I only always prayed for the strength to be a good mom. However, only one month after Jordan‘s CI activation, when he began understanding more than two sentences put together, I remember praying for the chance to thank all of the doctors who helped my son reach the point he is today. I mean I really prayed hard. When the Italian National magazine CHI contacted me and RAI 1 the Italian National TV did the same, I was so grateful for the opportunity to thank all of these people. Doctors don’t even realize the power they have, not only in regard to their ability to diagnose an illness or perform a successful surgery; it’s the human side they add to the equation that truly renders their job a success. We have always been fortunate to have found sensitive Medical Professionals. Maybe they have been sensitive and gone that extra little bit, because we have always said “thank you,” but that little extra bit is what changes everything.

Anyway, the prayer for the opportunity to thank these professionals has kind of exploded and turned into a desire to try to make a difference in some small way. For some reason, people close to me don’t understand this need of mine. They think I am consumed with the “success” of the book. The “success” of RALLY CAPS, which was really only written to give something back to my dad for having been such a good father, is that it led me to the support groups and creating this blog, which as I’ve said a million times is a healing experience for me.

The true “success” of RALLY CAPS will be if my speech on Thursday morning has a positive impact on some of these Medical Professionals who treat our kids. If that occurs, then, yes…RALLY CAPS will have truly become an enormous success.
Cross your fingers!


I’ll report back on Sunday…I’m outta here!

Posted by Jodi Cutler Del Dottore at 2:31 PM

Labels: NHS 2008 RALLY CAPS cochlear implant parenting medical professionals

JORDAN’S ESSAY: “DIFFERENT YET THE SAME”

Monday, February 23, 2009

12 Year Old Jordan Writes on Being Deaf

Jordan‘s Essay (translated from Italian to English) for a writing competition with the title of the competition being: Different Yet The Same
I was born deaf. And, I was born in the USA. These two things make me very different from other people. I began going to speech therapy when I was twelve months old, four times a week. I hated it, I would have preferred playing or relaxing. At the beginning, I wore two hearing aids that helped me to hear. My speech therapists Iris Lolini and Gabriella Gullotta helped me to learn to speak by teaching me new vocabulary. Slowly, I learned how to speak Italian.

Then, I started pre-school and I found a lot of children who were different than me, who I had never met before. Despite the fact that I didn’t hear well and I still didn’t speak well, I made a lot of friends. We played soccer, built castles and played war.

After pre-school, I began Elementary School in Istia- a new class with new children. I didn’t really like the new school at first, because there was a boy who picked on me and made fun of me because I didn’t speak very well. I was frustrated. My support teacher, Giulia, helped me a lot in class when I had difficulty understanding the other teachers. The kids in my class helped me but I threw a lot of temper tantrums and was often sad. I met my best friend Simone in first grade. He invited me to sleep over his house and we realized that we had a lot in common: we both liked playing Playstation, using the computer and playing basketball.

I had a lot of fun with Simone, but the school classroom was very noisy and full of confusion. I couldn’t hear well enough with my hearing aids, so after much debate my parents decided to have me undergo cochlear implant surgery in Pisa. I had the surgery when I was eight years old. I have to say that I had a very different Christmas that year. Santa came to visit me at the hospital and my grandmother prepared a huge Christmas lunch that we ate on hospital beds, everyone all together. Having the surgery was scary and my friends were worried about me. In fact, when I returned to school, they all clapped for me. My mom came to school to explain some important things to my class. I remember that for the first time, everyone in my class was silent and listening to what she had to say. They helped me carry my schoolbag and they started changing their behavior towards me. I changed a lot, too.

Although I am deaf, I speak well enough. They called my mom and I to appear on National television to talk about being deaf and the cochlear implant. My mom told me it was important to go so that other parents of deaf children would be encouraged by seeing me in what is a very difficult period for parents. I played the piano on tv and I talked about my experience. I explained all of the things I hear.

With the cochlear implant I hear all of the sounds around me a lot better. I hear the birds, my sister screaming, the television, my grandma on the telephone, my American grandparents on the computer speakers and always a lot of noise in class. I used to play the piano, but now I play the guitar and attend a middle school that specializes in music. The first week of my first year of middle school, the teacher asked everyone in the class to explain something special about themselves. I stood up and spoke to my class. I said, “I am deaf and being deaf, I understand that people can sometimes be scared of the cochlear implant processor I wear on my left ear. It’s a little strange. Maybe I sometimes speak in a different way. Maybe I don’t always understand when people are talking to me. Being deaf makes me different and many times, people are afraid of what they don’t understand. But, like all of you, I play Playstation, watch the television, play baseball and play practical jokes.” My class applauded, and I felt a lot more comfortable.

I am now in my second year of middle school. I have to say that in class I feel different than my classmates. They talk a lot and this creates some difficulty for me. I am very fortunate to have a classmate named Martina who helps me a lot in addition to my support teacher. During this last period, I’ve been working a lot harder to try to do well in school and I’ve brought up my grades considerably. I’m a lot calmer than I was before. Every now and then we have to do a guitar recital in front of an audience to demonstrate how we have improved our ability to play the instrument. Every time I have to play before an audience I get very shy, but in the end, I always do well despite my nerves.

I’ve started to look for a girlfriend, but until now everyone I’ve asked to go out has said they just want to be friends. I’m a little sorry about this, because I know I would be a really good boyfriend. In this case I’m not very different from my other schoolfriends, just a little less fortunate…the women just don’t understand me. For now, though, with my cochlear implant, I can ask all the girls I want without a problem.

I would like to end this brief story by saying that being born deaf has made me different than others my age, but I am sure that we are the same in the way I love my family. And with my cochlear implant, I can tell them directly or by telephone.
*Jordan Eric Del Dottore*

JODI’S INTERVIEW ABOUT HER BLOG

2009 Interview with Jodi Cutler from

“An American Mom in Tuscany: Jordan’s Cochlear Implant Story and Raising Their Voices: Inspirational Stories in Deafness”

http://rallycapsdotnet.blogspot.com

WHY DO YOU BLOG?
I blog to maintain my sanity. I began blogging to promote cochlear implant awareness and to provide resources for parents of newly diagnosed Deaf children.

WHEN DID YOU START BLOGGING?
I began blogging one year ago.

WHAT DO YOU BLOG ABOUT?
I normally blog about daily life in Tuscany, how I once again feel like a woman after losing myself in taking care of my children.

DO YOU LIKE TO CHAT WITH YOUR VISITORS THROUGH COMMENTS?
I love chatting with my visitors through comments and have made so many incredible virtual friendships with other moms sharing my same experiences in raising a Deaf child.

DO ANY OF YOUR FRIENDS AND FAMILY READ YOUR BLOG?
They wouldn’t miss a day!

DO YOU VISIT ANY FORUMS REGULARLY? If SO WHICH ONES?
The Pediatric Cochlear Implant Circle
Deaf Village
Deafread.com
Listen Up Yahoo Support Group
Learn2Hear Yahoo Support Group

WHEN AND WHERE DO YOU BLOG?
I blog from my computer here in
Tuscany every day.

HOW MUCH TIME PER DAY/WEEK DO YOU SPEND BLOGGING?
About two hours a day

WHAT INSPIRES YOU?
My children inspire me.

DO YOU HAVE ANY OTHER WEBSITES?
http://daigenitoriaigenitori.blogspot.com
http://cicircle.blogspot.com

HOW HAS BLOGGING IMPACTED YOUR LIFE?
Blogging has helped me to grow as a woman based on others who have touched my life and whose lives I have touched. It is truly an inspirational experience when people trust you to describe their special moments with their children.