Monday, May 31, 2010
This morning my phone rang- it was the Director of Jordan's new high school specializing in graphic art and advertising. He said, "Good morning, I'm calling to speak to you because your son has a disability, and while there will be a meeting organized in the near future, I just wanted to touch base to ask you a couple of questions."
*And here we go again*
We went through this procedure with pre-school, elementary school and middle school...and let it begin with high school.
I liked the man's voice, very competent voice. I said, "My son is deaf, he wears a cochlear implant, hears and speaks. He has difficulty in the classroom setting as it is noisy, therefore he needs a support teacher in the classroom so that he is able to hear all that the teachers have to say. We have always had an excellent relationship with the schools my son has attended, so you have an impressive group of schools to follow."
The Director said, "No problem, Signora, we are ready to work with your family. Will your son need a computer in the classroom, if he has one and the rest of the class does not, will he feel different than the others?"
This is the first time anyone in the school system has proposed a computer in the classroom, so I immediately started thinking of the voice programs that translate the voice to the computer screen. I replied, "My son is different, bring on that computer!" We decided to discuss the use of technological aids in the classroom at a later date, and I hung up satisfied with this first impression.
This afternoon, Jordan came home from school and handed me an essay he had written. Apparently I'm not the only one worried about the final Middle School exam he needs to prepare for in order to graduate to high school. This is what he wrote:
(English Translation by Mamma)
After one exam an entire world will open before me, another life. The perfect word post-exam would be "Pass", but the word I do not want to hear, "no" would be like a banana peel- failure. (it works in Italian)
I have both positive and negative feelings that I tell myself every time my thoughts surround me like birds on a tree. My negative feelings are that of suffering, sadness, fear of failure and having to begin a new school year, friends that will think I am inferior and the fear of causing my family to suffer.
My positive thoughts are happiness, joy, parties for passing the exam, always tired-yet intelligent as a brain surgeon, a new heart, a new life and a new world.
I have a beautiful life and I don't want to lose it, I will do the best I possibly can in high school if I pass my exam- I'll be smarter, have new friends, new drawings, a new class, new teachers, a new motor scooter (that's what he thinks), new technology and many other new things in my life. But, most of all, I will continue studying music, not the guitar, but the piano.
In these past three years of my life, rich in events, my friends' faces, voices in newspapers about what has happened in the world, emotions lived at school, field trips and moments lived with my close friends, I have four elements that I will take with me. They are pictures, but they can break; drawings, but they can get old; paintings on glass, brick, etc, but they can shatter into a thousand pieces. The last element is friendship, the only thing truly important to remember, because it never breaks, gets old or shatters.
I wouldn't mind a girlfriend, but who?
By Jordan Eric Del Dottore
Saturday, May 29, 2010
So I did.
Four months ago I interviewed with a sort of advertising agency who asked me to go to Dubai.. I said okay and started dreaming Dubai. Then, I received the phonecall saying that they would no longer need me to go to Dubai and the brick wall smashed my nose.
One week later I received another phonecall from a large company asking me to come to speak to the President. I went to talk to the President, met an incredible, fascinating person who gave me a job opportunity that fit perfectly with my schedule. Nothing major in terms of work, but the possibility to travel through that person's mind and experiences has enriched me more than I expected.
Every new person we meet, time we spend alone just to think, looking back on a life and learning and growing. The other night I tried "bottarga" and drank an exceptional bottle of wine with a friend. New food stimulates sensations and stories.
Sometimes life requires that we look at it with different eyes, in the exciting, the dull, the passionate and the frozen pizza.
Through our kids we relive sidewalk chalk, hide and go seek and that first spray of deodorant.
And it is good to sit back and feel something.
I've been preparing for the NHS 2010 with other parents from around the world, other parents who are passionate and motivated and who teach me something new every email sent.
It is good to have a glimpse into the lives of the others, it makes you think of how you can improve your own.
I need to go home. I need to take my kids to my home. We need a break. Don't know how we're getting there, but I'll find a way. It is a priority.
The GPOD has a meeting with the CDC at the conference to discuss a project on parental support in EHDI worldwide.
That is a priority as well.
Friday, May 28, 2010
The type of woman who created traditions and barbecued them annually.
The first person to take me aside and say, "Jodi, I think Jordan may not be able to hear."
As we debated cochlear implants, she sent me magazine and newspaper clippings from Baltimore to Italy.
Every birthday and anniversary, her card came faithfully in the mail.
We always had Thanksgiving at her house growing up, and she made the best damn merengues with chocolate chips-ate so many I traditionally threw up every Thanksgiving night.
She always bought a new version of a Toyota, always Toyota- cleanest car I've yet to see.
She kept a calendar of dinner dates, grandkids' parties, and special events.
Her job was helping people, and she helped many.
Uncle Marty had a stroke when I was young, she never left his side.
She said that the kind of man you want to marry is not the one who buys you flowers or takes you to expensive restaurants, but the man who brings you tea when you don't have the strength to get out of bed.
She had the best tan from Memorial Day to Labor Day.
She could have sold a boatload of Oil of Olay.
10 rounds of chemo-therapy,
6 years of ovarian cancer,
she did not complain, she listened to the cancer and what it had to say to her.
It told her to love her grandkids even more, to appreciate her time with her husband and children.
I know that I will never meet another person the rest of my life who will so completely teach me the meaning of the word DIGNITY.
Before she died, she wrote letters to her family, and she left a small white box wrapped in a silk ribbon for her granddaughter. She wrote, "This is my gift to you. Carry it with you always, but never open it..because inside it is all my love for you."
And I will miss her so much, her and her chocolate fudge, caramel ice-cream pies.
Thursday, May 27, 2010
The contest was entitled: "Different Yet the Same" and for the second year in a row, Jordan participated. Last year he won honorable mention for his essay, but this year, he won a prize of 167 euros for this drawing:
Then, the woman in charge of distributing the awards asked Jordan to speak.
Jordan took the microphone and said, "I'm Deaf. I would like to thank my class for always helping me along with my teachers. It isn't always easy and they are always there to encourage me. I have grown a lot in the past three years."
His class cheered.
The jury smiled.
Friday, May 21, 2010
We are part of an international Cochlear Implant Community of families who every single day work on raising our kids' voices, and in doing so, we have learned the importance of raising our own collective voice.
The problem is that we are so good at what we do and our kids are so amazing, that there comes a time when they begin raising their voices.
Why Cal Ripken Jr.?
Just like Cal, we go to work every day...as do our children and when we are sick, depressed and mentally exhausted...we work harder.
Please keep leaving comments...it isn't about the book- it's about the journey.
Love and thank you so much to all of the families who continue to support spreading awareness...by educating a larger community every single day.
Jodi and Steve
Christian and Lily's Mommy said...
When my son Christian was diagnosed with profound bilateral hearing loss at 9 months of age, my heart broke into a million pieces. Would he EVER hear me tell him that I loved him? Would we ever hear his sweet voice? My husband and I were devastated, and we searched for support. We found Jodi and her blog, and she quickly became a source of inspiration and hope, just as Rally Caps is for our kids. Although we've never "met" in person, she is true and trusted resource and friend.
Christian received his Cochlear Implant at 14 months of age, and now 2 years later, our home is anything but silent. Christian talks and sings just like any other 3 year old, if not BETTER! We are thankful for the miracle of the Cochlear Implant, and the gift of hearing.
May 18, 2010 5:40 PM
Where do you want comments for Disney? Here? Cause I'll go wherever and leave whatever -- they have GOT to make that book into a movie. It's perfect for that. What a great opportunity!
May 18, 2010 6:01 PM
My daughter loved the book and loved seeing another child with an implant in the story. We donated a copy of the book to her elementary school library.
When she lost her hearing as a baby, I thought I'd never get to hear her say the words "I love you mom". How naive of me. Within 3 years after her implant, she was ahead of hearing kids in reading and language. Both receptive and expressive. She now has 2 implants, is just finishing 6th grade and has the reading level of a 12th grader. Yes, she speaks and hears just fine, thank you very much. She also signs and loves beind deaf and loves having implants.
Just in case Disney wants to meet her, come on up to the Seattle area, and meet the new face of deaf kids.
Jodi, you and your dad did an awesome job on that book and it would be a perfect Disney story.
May 18, 2010 7:24 PM
(You know, the Cochlear Celebration is held in Disneyland/World....)
My son had his first CI when he was almost 13 months old, his second one (bilateral) in kindergarten, and he is now 9 and he THRIVES: he is in the neighborhood school, he loves reading (reads a million words every month), math (is grades ahead), flying trapeze, bike riding, computer games, and is an all-around delightful guy.
Having the book turned into a movie would be terrific--here's to hoping!
May 18, 2010 7:33 PM
Drew's Mom said...
My son Drew was born with profound hearing loss and was implanted bilaterally at 8 months of age - one of the youngest in the country! At 3 1/2 years of age now he talks just as well as his peers, and amazes us everyday with the things he can hear!
We actually just returned from a trip to Disney World - it was an amazing and magical time. Drew loved every minute of it! He has talked for the last month about Goofy's Rollercoaster, the tea cup ride, Hollywood Studios and how he wants to go back to celebrate his 5th birthday. What a wonderful time we had, and Drew enjoyed all of the sights and SOUNDS!
Good luck Jodi!
May 18, 2010 8:30 PM
Wow, Jodi, amazing!! My son, Danny, is barely 2 with bilateral cochlear implants, and while he's got other issues he's battling, he's starting to really grasp and understand language and try to talk. It's a miracle, one that I doubt I ever would have been brave enough to pursue without the support and stories from blogs and books like these! I've read Rally Caps and can't wait to share it with him when he's older, and think it would be an amazing movie.
May 18, 2010 9:57 PM
Paula Rosenthal said...
My 14 year old daughter, Julie, and I both have two sets of cochlear implants, devices that have taken us from profound deafness to being able to function with just a mild hearing loss. Our lives would be dramatically different without them. Because of her amazing ability to hear, Julie's speech is as clear and perfect as any child's with normal hearing. She socializes easily, sings along to music and is an excellent student in school. Julie is just one of many children around the world benefiting from her cochlear implants. Parents and children everywhere need to see more deaf children with cochlear implants who both speak and hear in movies and literature.
Julie and I have the unusual privilege of having a portion of our cochlear implant stories played in the Innoventions building at EPCOT. We are two of the four people profiled in a special version of, "Back to the Hearing World," an informational video about cochlear implants and their impact on people's lives. We thank Disney for their support and we hope that they will continue showing their support of this amazing technology by considering making "Rally Caps" into a major motion picture. Imagine the impact a family movie like this will have on adults and children alike. Imagine, Disney.
May 18, 2010 10:03 PM
Jodi! This would be worlds colliding (in a good way) for Neal since Rally Caps, hearing with cochlear implants, and Disney are some of his favorite things. I'll post the address for his book review blog here in case Disney wants to get the opinion of a 10 year old with cochlear implants on Rally Caps. http://savagereads.blogspot.com/
I hope they would take note that your book rated higher for him than The Hobbit. That's got to give it some clout right?
I told Neal about Disney reading Rally Caps and his biggest concern was how they would come up with a realistic cochlear implant prop. haha I said I was sure Disney could find someone who has one or two of them in real life to play the part of Luca : )
Good luck with this. I can totally see a buddy/baseball movie with a character with a cochlear implant coming from Disney, and it would be so great for our kids to see someone representing themselves on the big screen!
May 18, 2010 10:25 PM
My daughter has CP...her challenges are different than the kids here, but anything that shows a different "normal" is a wonderful thing! You would be lucky to make this well crafted and heartfelt story.
Thank you for your time,
P.S. Jodi -- I'll keep my fingers crossed for your much deserved success. xoxo
May 18, 2010 10:43 PM
Jodi, my son has determined that he wants to play baseball next year. He is 16, has Asperger's Syndrome and a Cochlear Implant. He has never been interested in baseball - but he is now! Yay Rally Caps!!!
May 18, 2010 11:00 PM
Hi, I'm a SAHM of 7 kids. We went to Disney (FL) A couple years ago...an interesting experience for a large family, tho we were expecting #6...so only had 5 at the time.
Now our youngest was just diagnosed w/ profound hearing loss 2 months ago. He gets hearing aids this week, to see if that helps, but he will probably need implants. Our story is at joybell74.blogspot.com
May 18, 2010 11:29 PM
My daughter Keira received her first CI at age 17 months and her second at age 3 years. By the time she was 3 years and 4 months old she had surpassed her hearing peers in receptive and expressive test scores. Everyday she says something, repeats something or over hears things I do not expect her to hear. Our journey with cochlear implants has exceeded my dreams and expectations. Disney is all about DREAMS, isn't it?!?
May 18, 2010 11:33 PM
Michelle Benavides said...
I cried at just the thought of DISNEY making this into a movie. No one has even heard of cochlear implants unless you are touched by someone you know that has them or talks about them! When my son was diagnosed with bilateral severe-to-profound hearing loss I too cried and had my heart crushed that I would never hear my son say "mama" or "I love you" or know the sound of his mother’s voice and hear me say "I love you” to him. He started off with bilateral hearing aids as most kids do but they were not giving him access to all the sounds in the English language. When he was 3.5 he was bilaterally implanted and in just the first months (weeks really) he just exploded with progress in both his hearing ability and distant hearing but also his language and vocabulary. He just barely turned 4, and oh the possibilities that lie ahead of us. I myself had no clue what a cochlear implant was and it took me months to remember what they were called. I have yet to meet a person that knows what they are or that has ever heard of them. I educate them, believe me, my co-workers are all minor experts on cochlear implants! I am extremely excited to attend the AG Bell Bi-Annual Convention that is at DISNEY WORLD June 2010. Disney movie producers should visit us, as there will be many kids of all ages with cochlear implants there. Disney movies are extremely popular GLOBALLY and if children knew what cochlear implants were (and their parents) and understood what amazing gift they give hearing impaired children… OH THE POSSIBLITIES! Knowledge is more powerful than anything. Things that are new, different and unknown are scary to people. In recent years the deaf culture has been transforming to now include deaf members who are hearing and speaking. Better awareness about cochlear implants may help bridge those who resist the acceptance of cochlear implants and unite the members in the deaf community, both signing and hearing. Maybe Joey McIntyre from New Kids on the Block would want to do the theme song since he too has a hearing impaired child! And for the record, my son now “moms” me to death and we most definitely say “I love you” on a daily basis. Music to my ears and joy to my heart.
May 19, 2010 12:16 AM
Our son Aiden was born with profound hearing loss in both ears. We knew noone with hearing loss, had never even heard of "cochlear implants", and were devastated thinking we would never hear our son's voice or him hear our "I love yous". We felt lost, hopeless, SCARED. Then we found Jodi and other CI parents, who provided us with FAITH and HOPE through their child's stories and videos showing us how MAGICAL the journey to hear through cochlear implants truly is.
Aiden was bilaterally implanted at 10 1/2 months and has been hearing with his new "ears" for 14 months now. He HEARS our voices. He SPEAKS his voice. He is catching up to his hearing peers through the miracle of cochlear implants.
I have shared Rally Caps with our family, like Aiden's brother, sister, and cousins, to help them understand Aiden's world better. What a perfect story to help educate the world on the miracle of cochlear implants! Not only has Jodi provided me hope through Jordan's story, she has been an inspiration to me as an advocate and a mom to my deaf son.
BTW, our family is heading to Disney this summer to celebrate our son's journey and reward all our hard work put into helping Aiden hear and speak. How wonderful for him that he'll HEAR the fun all around and how wonderful for us we'll HEAR his laughter and the excitement in his voice.
May 19, 2010 7:43 AM
My son Max passed his newborn hearing screen but at 17 mos. he was diagnosed as profoundly deaf. We were devastated at the time. However, since that time he had received two cochlear implants and now hears and speaks and is a walking miracle. We have been so fortunate to get to see the miracle everyday of being able to hear. Although we live in a small community everyone knows of my son. It would be great if Disney could turn Rally Caps into a movie. I'm thinking the Blindside would have to move over.
May 19, 2010 10:17 AM
Jodi, are CIs manufacturers informed? If not, please do, ALL OF THEM. They can certainly find ways of conveying to Disney the important messages beyond your book! Ferdi
PS: think about the Cochlear Celebration @ Disneyworld
May 19, 2010 10:18 AM
My daughter, Tyler, passed her newborn hearing screen and was not diagnosed until the age of two. I scoured the internet and libraries and this was the first story I ever found about a child with an implant; everything out there is about deaf kids but not deaf kids who use aids or implants. It was a great help to me and also my school age nieces and nephews to help them understand how their cousin would one day hear. I have passed on my two copies to the public school library and the bookshelf at Texas Children's Hospital and I tell everyone about this blog! I love to read it everyday and reading about all of the adventures Jordan and Sofia put you through makes me smile! Tara
May 19, 2010 10:35 AM
Tiffany C. said...
My son Brayden is now 6 and is a bilaterial cochlear implant user. We face other challenges along with his deafness. He loves baseball and we used Rally Caps to inspire him to go after his dreams. He loves the book and is an excellent first baseman. I would love to see this turned into a movie! That would be awesome!
May 19, 2010 3:41 PM
I can't believe all the great stories and support from Jodi's "followers!" Thank you so much....keep them coming - I will make sure my Disney contact reads them all. Thanks again! Steve
May 19, 2010 4:00 PM
Paula Rosenthal said...
Hi Steve, As you already know, your daughter Jodi is an amazing woman who has done so much for the community of families dealing with significant hearing loss. I think I can speak for many when I say that we would do just about anything to support her in her spectacular efforts to tell and show the world how cochlear implants can change a child's life. I'm so glad you wrote this book with her and that you're moving forward promoting it on an international level.
May 19, 2010 7:47 PM
Connie L. said...
Our 11 year old daughter with bilateral cochlear implants LOVED "Rally Caps". We also bought a copy for her school library where not only did the girls love it, but the boys did too. We live in the Tampa Bay area where baseball is almost year round. Who doesn't love a good baseball story that has comedy, hope and acceptance. This would be a perfect fit for a Disney film.
May 19, 2010 10:30 PM
We loved Rally Caps because he wore his ci just as he does his clothes everyday...just part of his everyday 'uniform'...kinda like my two deaf children who wear cochlear implants. The kids at school see them as their equal, even pitching in to help change batteries every now and then so my kids can hurry up and hear again when their batteries go dead...because we know everything 6 and 9 year olds say is of most importance! (lol) And a big lesson here is, sometimes we all need a pep talk, and it could come from an ulikely source. Go Rally Caps!
May 20, 2010 12:15 PM
Dear Disney folks, please make Rally Caps into a movie. Cochlear implants are wonderful, and they're also terribly misunderstood. My son got a cochlear implant before he was a year old, and now at two and a half he recites long passages from books, makes up his own stories, and can sing just about any Beatles song you name. This is pretty darned good for any kid, but especially so for one with severe/profound deafness. Cochlear implants are indeed changing the landscape of deafness. Some people fear such change, and they cling to old myths about the risks and ineffectiveness of CIs. By making Rally Caps into a movie, you can help dispel these myths and paint a more accurate, positive portrait of this amazing technology. And make some money, too, because it's a great story.
May 20, 2010 2:39 PM
Your blog and posts on CI circle have been such a great inspiration since we found out that our gorgeous preemie was deaf. In the 3.5 year since we started on this journey, I think about all the things that your son does that I want my son to do - play sports, speak several lanaguages (including sign), be successful at school.
Your humor and good sense have helped so much. I do hope you get the chance to share your story with a bigger world.
Tuesday, May 18, 2010
Monday, May 17, 2010
Love...still can't figure it out- comes in so many shapes and sizes.
I love my kids, my parents, my ex-husband, my sister, my dog and my friends who have helped me through this period.
I love the moms I meet every day through email or in person who are living the same experience I lived with Jordan.
I have met meny in this period.
I love the moments and I learn.
But what moments can compare to four in a bed?
We are so many people in one- Mother, Woman, Worker, Cleaner, Slave, Chauffer, etc.
Balancing it all is thoroughly exhausting and honestly, I hit the love limit. However, once the roles start coming together and they come together with passion, sacrifice and integrity...just maybe you can start giving again.
I still can't figure out whether or not we can choose to love or not to love someone.
We either love or we don't?
See, that's the thing about love. It comes in so many shapes and sizes, that it isn't always flaming red...it can be pink.
But we have been trained to associate true love with flaming red...
What if it's really white?
Friday, May 14, 2010
NHS 2010 is coming soon...things are crazy here in Jordan and Sofia's house.
My life is becoming an acronym.
Currently working on this:
Global Coalition of Parents of Deaf/Hard of Hearing Children (GPOD)
Position Statement and Recommendations for Family Support in the Development
of Newborn Hearing Screening Systems (NHS)/Early Hearing Detection and
Intervention Systems (EHDI) Worldwide
The establishment of the Italian Pediatric Federation Newborn Hearing Screening Network is the result of an international collaboration between Parents and Medical Professionals in order to promote an effective model in developing Early Hearing Detection Intervention Programs that recognize the role of parents as partners in the process.
Among other factors, one important component frequently underestimated in most early intervention programs, both in the USA and other countries, involves the role of parental involvement within the Early Hearing Detection Intervention (EHDI) process. When a parent receives the news of their child’s hearing loss, reactions may include, but are not limited to denial, grief, guilt, shame, fear and impotency. A parent may begin to ask certain questions: How do we know if the professionals in our children’s lives are capable, educated, trained, up to date in their chosen fields of expertise? Do they respect our children and us as parents? Do they understand the needs of children who are deaf or hard of hearing? A life-long health professional - parental collaboration begins at the moment of the diagnosis of that child.
When analyzing the habilitation process of a deaf child, the relationship between health professionals and the crucial role of parents in raising that child is a 50-50shared responsibility. An objective of EHDI programs must be to empower parents by providing support from the beginning of the process. Distributing informative literature regarding the newborn hearing screening process and providing parents with access to resources such as parental support groups upon diagnosis equips parents with the tools necessary to immediately begin advocating for their children. As the American Society for Deaf Children states: Parents have the right and responsibility to be primary decision-makers and advocates. For this role, parents need education, access to information, and support.
The Italian Federation Pediatric Newborn Hearing Screening Network was created by combining the parental perspective and medical protocols in order to establish the roots for stronger EHDI programs beginning from the concept of the pediatric medical home.
Struggling to get the new blog organized...Born in the USA...Made In Tuscany
Praying we'll find a way to get to Baltimore this summer, but it doesn't look good.
The important thing is that even if we get lost every now and then, we find ourselves over three scoops of gelato and a nutella milkshake!!
Wednesday, May 5, 2010
A friend told me I should look in the mirror everyday and make faces at myself to keep life in perspective.
Another friend told me to stop being a Puritan and that I am a product of my family, my religion and my awful character.
Yet another told me I was sweet, incredibly talented and to make my blog a book.
Sunday morning I woke up with two kids in a bed. Jordan kissed me on one cheek and Sofia smooched the other. They love me even in the morning when my face is makeup free.
They are so few...to whom you give that you.
Tuesday, May 4, 2010
My friend Greg Abramowitz took this photo during his vacation in Tuscany, and when I saw it on his facebook page, I thought...what an amazing guy who captured the essence of Tuscany in one click. There are so many different faces of Tuscany, but if I had to choose one to represent the entire experience, these would be it. Just above the left shoulder of the elderly man in the beret is a Medieval ring used to tether horses...and just in front of those two old friends is a pigeon that has many a story to tell.
And so do I...check out my new blog: