Friday, May 21, 2010
Dear Disney...(Thank you to the Families)
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.