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Did you know that an estimated 30-40% of children who are deaf or hard of hearing are not “just deaf” but have other associated challenges? I like to call these children “deaf+” or “deaf plus” — children who, in addition to hearing loss, have a little something extra that makes them special and unique.
Many of the most common causes of deafness in children are symptoms of larger syndromes or conditions. For other children, their “deaf+” needs may be less obvious — adoption, sensory integration issues, difficult family situations — all of these factors can contribute to a less than ideal environment for learning listening and spoken language. Many people believe that only the “superstars” can succeed with a cochlear implant, only the best and brightest deaf children will ever learn to listen and talk. Does that mean that cochlear implants and training in listening and spoken language are unattainable goals for these children? Absolutely not! In fact, I would argue that, for multiply disabled children, therapies that help them get the maximum benefit from what hearing technology they have and give them the most opportunity possible to communicate with the wider world are even more beneficial than for our children who are “just deaf”. Just as hearing and talking can be goals for “just deaf” children, listening and spoken language can be achieved by “deaf+” children, too! It might take a little longer, but children with multiple disabilities have just as much right to oral/aural communication as anyone else. It is much better to set the bar high and scale back later than to deny these children a chance at listening and talking.
Here are two books I highly recommend for parents of “deaf+” kids (and, for parents of children who are “just deaf” there’s lots of helpful information in these books for you, too!):
The Connected Child by Karen B. Purvis, David Cross, and Wendy Lyons Sunshine is a book intended for parents of children who joined their families through adoption, but this book has a wealth of information about basic nurturing and attachment-based parenting strategies parents of all children. The book has great information about how diet and neurochemistry can impact children’s behavior and gives strategies for effective discipline, too. A must-read!
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The Out-of-Sync Child by Carol Stock Kranowitz discusses sensory integration issues, which are surprisingly common in children with hearing loss. Helping your child deal with overwhelming sensory input can help her make sense of her world and better focus on the task at hand — learning about her world, learning how to listen and talk, and, most importantly, having fun!
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So… let’s hear it for the great “deaf+” kids out there who are succeeding despite everything… and the wonderful parents, teachers, and therapists who are making it happen. All children deserve a chance to listen and speak!
Only a few years ago, according to the University of Michigan, there were about 100,000 cochlear implant users worldwide. Today, I just read an article stating that there are now over 130,000 cochlear implant users worldwide. According to this article, the future growth expected seems to be quite big as this statement clearly states:
“The acceptance by doctors and patients of cochlear implants continues to grow internationally. The Neurotech Reports study estimates that the global cochlear market will grow from $725 million in 2008 to $1.59 billion in 2012, mainly due to expansion of the market from profoundly deaf patients to those who are severely hearing impaired as well as the rapid growth of early implantation in children. More than 130,000 devices are in use worldwide, the study states.”
Also, Med-El, one of the cochlear implant companies, is expanding their company, according to the article:
“Collette says the company now is accepting resumes and expects to grow by 11 percent locally and 14 percent nationally. That would be eight or so additional people in the Triangle working in sales and marketing, distribution and customer service.”
This happening tells me that cochlear implants are in demand today due to more and more infants being implanted early and also the elderly who do not benefit from the most powerful hearing aids.
I had a conversation with my mother in the car today about my taking a train from France to Italy to visit Jodiin a few weeks. “I know you’re going to think I’m crazy, but I need to give you this suggestion,” said my mother, “Please make sure you wear your hair down if you’re going to sleep on the train.”
“Huh? You don’t want my processors to be stolen?” I asked.
“Nope. So, be careful since you’re unconscious when you sleep,” said my mother.
Due to this unfortunate event, I guess other CI users and I are becoming hot spots for thieves if our hair is cut short or if it’s up in a ponytail?! ARRGH! That means that I probably now can’t wear my hair up too often?! Why do thieves have to create new rules and be SO mindless to steal anything?
Lisa Golstein is a wife, mother, and freelance journalist. I had the pleasure of meeting her at the 2008 AG Bell Convention in Milwaukee, and she was kind enough to agree to be videotaped to share her story with all of you. So, without further ado, I’ll let Lisa speak for herself and share her story with the world!
Throughout my life, I have been asked if I would take a pill to give me normal hearing. My response would be yes. I wouldn’t see a dramatic change in my life as I can already hear and speak. I would just simply see that taking a pill as an upgrade of the quality of my life as the only change would be that I wouldn’t have to worry about handling the external parts of the processors, and I would also perhaps have improved quality of hearing. While I love having my CIs now, and my quality of life is very good, I can’t see why I would say “no” to something that would improve my quality of life. It’s like upgrading to a new processor with improved quality of sounds and hardware design.
Because of the recent medical breakthrough, I see that it’s perhaps possible that I could get a pill or some form of drug that would regenerate the hair cells in my inner ear. As someone who has Usher Syndrome, I’ve been keeping myself up-to-date with the research for RP and Usher Syndrome. One of the possible treatments that I could have is a gene therapy drug. Because my deafness is linked with RP, I always wonder if not only my vision would improve, but also my deafness? That’s a question that has always been spinning in my mind…
Decades and centuries ago, oral education used to be a privilege reserved for the select few — children whose families could afford costly travel, private tutors, the best hearing technology. Today, the reality is vastly different — NO child should EVER be denied a chance at listening, speaking, and a quality education just because of her family’s inability to pay for these services. Communication is a human right for EVERYONE, regardless of financial status. Over the years, I have seen families who had everything and families who had nothing — and it was parental involvement, NOT money, that made the difference in these children’s outcomes. This is why Rachel and I made a commitment when we began our EaR Books productions that profits would be donated to charitable organizations that support deaf children — we know that parents who are willing to advocate for their children and seek out resources when necessary are crucial to the success of their children. The sources of funding are out there, and there are plenty of people willing to help. Just ask! It could make the difference for you and your child.
Here are some fantastic resources to help families who have chosen a listening and spoken language approach for their children and their families (in no particular order):
The Cochlear Implant Awareness Foundationis an awareness-raising organization started by the parents of a CI user that also provides support to families investigating cochlear implant(s) for their child(ren)
Rhyan’s Hope is another organization founded by parents of a CI user, and they help provide funding for CI candidates
various other CI centers, AVT practices, and oral schools offer their own in-house financial aid programs and scholarships — just ask!
So, I hope that this small sampling of resources will help to show you that parents should be free to make the choice of communication modality/hearing technology for their children without worrying about financial strains because, regardless of what path you choose, help is out there!
If you know of any other sources of funding, please leave a link in the comments section!
Jodi’s blog is not the only place to find her sense of humor if you’re not living in Italy. Her very own novel for children, Rally Caps, co-authored by her father, Stephen J. Cutler, is filled with laughter and incredible imagination. I could totally picture a movie as I was reading the novel, especially the the scene where Jordan got shaving cream and pine needles all over him. This scene actually reminded me of the movie, The Parent Trap, 1998 version, when one of the roommates in a cabin got shaving cream all over her body. I also loved the part where Niki revealed her secret to Frankie. Oooooh man! What a nice smack in Frankie’s face! I absolutely love Luca’s positive confidence in his deafness. He reminds me of me when I was growing up. I was never afraid to speak up about my deafness. Just like Luca, when I introduce myself to new important people, especially roommates, I certainly inform them about my cochlear implant, especially the fact that they need to be aware that I can’t hear at night. People were always amazed that I could still have a spoken conversation without my implants on like Jordan’s amazement that Luca could speak without his cochlear implant on. Also, Jordan’s going through his tragedy of breaking his nose brought back my memories of breaking my nose when I played softball. :) Although, I never had the opportunity to go back to playing softball unlike Jordan, I can’t complain as I got a nose job, something that I always wanted since I was probably 13. So, I guess things happen for a good reason! Anyways, I shouldn’t get into details as I don’t want to spoil it for anyone who wants to read this book.
I also have to mention that I am very glad that I waited to read this book after several months of immersing myself in Jodi’s blog. Reading throughout this novel, I was totally able to pick up parts and characteristics that were based on her and her family’s life. I loved how Jodi and her father packed all of their family members and their life moments into one creative story! I felt like I was reading historical fiction!
Whether you are a baseball fan or not, this novel is definitely a hysterically funny novel to read, and it’s even more priceless for deaf children with cochlear implants!
Jodi, I can’t wait to find some Nutella in your kitchen…
There is no question that one of many girls’ favorite hobbies is playing with dolls. Dolls are not just about dressing them up and being girls’ companions. They help girls exercise their imagination and creativity. Sometimes dolls even open them up a whole other world. Jessica loves to tell stories out loud by herself or with her friends when she plays with dolls. Often when Jessica plays with dolls, the most notably known ones, the American Girl dolls, she submerges herself into another world, such as the colonial days, the depression era, or even simply another story. Recently, she immersed herself in the Ellie’s Ears book, and lo and behold! Look at what she did!
Today’s children with hearing loss may surprise you! With the help of cochlear implants, digital hearing aids, and specialized instruction in listening and spoken language, deaf children can learn to listen and speak, just like their hearing peers. According to the University of Michigan, over 100,000 people have received cochlear implants in the past 20 years. Children with cochlear implants, however, are rarely represented in children’s literature and cochlear implant technology is widely misunderstood.
To address these problems, Elizabeth Boschini, a student pursuing a degree in Speech-Language Pathology at Texas Christian University (TCU), and Rachel Chaikof, a bilateral cochlear implant user and student at the Savannah College of Art and Design (SCAD), created a new children’s book, Happy Birthday to My Ears. Happy Birthday to My Ears describes a young boy’s first year of hearing through his cochlear implants. The book describes the sounds that accompany each month and holiday through child-friendly pictures and rhymes.
Happy Birthday to My Ears is the second book created by Chaikof and Boschini. The first, Ellie’s Ears, released in May 2008, has already been sold across the United States as well as over six foreign countries. All EaR Books products are available for purchase at http://stores.lulu.com/EaRbooks. The author and illustrator can be contacted at elliesearsbook@gmail.com or via their website, www.cochlearimplantonline.com. Proceeds from book sales will benefit organizations that provide legal advocacy and financial assistance to people in need of cochlear implants and other assistive listening devices.
Filed under: EaR Books — Rachel and Elizabeth @ 7:51 pm
I had a scary dream a few months ago. I was walking in my neighborhood. “BAAAAAAAAAAAAAM!” All of the sudden, I heard a bomb explosion-like sound, and I turned around and saw balls of fire and smoke flying all over the place. I heard myself saying, “NOOOOO! HELP ME PLEASE!”
As we all know, the only time when I don’t wear my cochlear implants is when I shower, swim, and sleep. At night, when I’m sleeping, I’m completely deaf. I absolutely canNOT hear a single sound. When I have dreams at night, I actually CAN HEAR in my dreams. Quite bizarre, isn’t? Again, I do NOT wear my CIs at night, and I canNOT hear a single sound. BUT, I can HEAR when I dream? I wonder if it’s because my brain is well wired for sounds since I grew up learning and knowing how to hear and understand the sounds?
Are any of you, CI users, able to hear when you dream?
The Connected Child by Karen B. Purvis, David Cross, and Wendy Lyons Sunshine is a book intended for parents of children who joined their families through adoption, but this book has a wealth of information about basic nurturing and attachment-based parenting strategies parents of all children. The book has great information about how diet and neurochemistry can impact children’s behavior and gives strategies for effective discipline, too. A must-read!
