New Book Featuring Our CI Kids!!!

The charity book project, I Don’t Believe My Ears, is finally completed after several months of assembling it together. Val Blakely from Cochlear Kids and Rachel Chaikof from Cochlear Implant Online would very much like to thank all these contributors who submitted wonderful and humorous stories:

Abbie Crammer at Chronicles of a Bionic Woman
Amy Kwilinski at CochlearImplant.net and Auditory Verbal Parents
Ann Lovell
Beverly Spenser
Diane Beltrami
Jodi Cutler Del Dottore at An American Mom in Tuscany
Kara Hendrick
Kim Larsen at The ASL-Cochlear Implant Community
Kimberly Pendley at Can you hear me?
Leaf Leafler at Say What?
Leslie Hine at The Hine Family Est. 1996
Liz Hupp
Melissa Chaikof at Auditory Verbal Parents and Cochlear Implant Online
Melissa Krilosky at Our Journey to the Hearing World
Samantha Trueblood
Val Blakely at Cochlear Kids
Vicki

All proceeds will go to Deafness Research Foundation, a non-profit organization 501(c)(3) that works to fund research to help those living with hearing loss and balance disorders, and on programs to raise awareness of potential causes to protect those at risk.

Go order one today and help create a difference for today’s generation and the future generation of deaf people and have some good laughs!

Going to Disneyland?

You're child just had cochlear implant surgery. What are you going to do now? Well, maybe not right away, but sooner or later you may decide: “We’re going to Disneyland!” You might then ask yourself, “What do I need to know about going to Disney for my child with cochlear implants?” As mother to a son with bilateral cochlear implants who has had annual passes to Disneyland his entire life, I thought I should share my experiences. Keep in mind that I have not had personal experience with the entire range of options available to guests with hearing disabilities.

The first two things I would want everyone planning a trip to Disneyland to know are:

1) Disneyland and Disneyworld are two entirely different creatures. The rides may be the same, but the rules and services are not. Do not make assumptions on how your day will go based on the accommodations you received on a trip to Disneyworld.

2) Disneyland wants guests to use mainstream access to rides whenever possible. There is no Guest Assistance Card handed out for hearing disabilities.

On the second note, while Disneyland does not hand out Guest Assistance Cards to guests with hearing disabilities, they do have several aids available. You can see a list of rides and attractions where aids are available on this page of Disneyland’s website.

You can printout a complete guidebook for guests with disabilities.

You can also take advantage of the Fast Pass option for certain rides. This has nothing to do with hearing ability, but if you use the fast passes strategically, you can spend much less time in lines.

A REVIEW OF AVAILABLE AIDS:

The only aid that my son has personally tried out is the handheld captioning device. At the time that we tried it, we went to guest services inside the park and left a $100 deposit. The cast member who gave it to us had no idea how the device worked, but we figured it out easily. It works only on specific rides and at the end of the day; we decided it wasn’t worth the effort to get it or to carry it around. We’ve never used one again. The captions it provided were not in sync with what was heard over the speakers, and hardly any of the words spoken were included in it. It actually made it more confusing for my son.

Other services you can see on the website, reflective captioning and video captioning are on select rides or shows and you need to contact a cast member at the ride to use them. We have not found the need for them at any of the places where they are available, so we’ve never tried them. They seem to mostly be available for pre-show introductions, and truthfully, my kids do not care about the pre-show introductions. Maybe they would be useful for an adult who needs to understand the rules before entering.

One thing I would like to ask about on my next trip to Disneyland is their written aids. They are supposed to have packets containing dialogue and narration for certain attractions and shows. A flashlight and pencil and paper are included with it. There is no list of which rides and shows this is available for on the website. I’m dubious of the use of a flashlight on a ride or during a show, and being able to read the narration without one seems highly unlikely. Flash photography is usually not allowed on rides, and it can be very annoying when people ignore that rule, so I think I would feel self conscious if I had a flashlight and was reading a script in that situation.

The final option for guests with hearing disabilities is American Sign Language interpretation and amplified or TTY equipped phones. Disneyland’s website says to put in a request for ASL interpretation a week prior to your visit if you want it. It seems you will have to follow a predetermined schedule to use it.

MAGNETIC BRAKES:

Some people have voiced concern over the use of magnetic brakes on some of the rides at Disneyland, and how they might affect a cochlear implant device. Here is the response I received from one Disney Guest Communications Representative regarding this:

“Equipment such as electronic motors and radios that produce electric and magnetic fields are utilized extensively throughout the world and also within our Resort. These fields are generally no greater than you would experience in any urban environment, or may be exposed to through common household appliances such as vacuum cleaners and hair dryers. Although we are unable to give you a list of exact levels for each of our Theme Park attractions, our measurements showed levels below 1 Gauss (0.1/ milliTesla) which are well below the published 5 Gauss (0.5/ milliTesla) level of concern for most medical devices such as pacemakers, cochlear implants, or insulin pumps according to the American Conference of Governmental Industrial Hygienists [1].” The representative also added that a guest should contact their own physician if they have concerns.

PERSONAL ADVICE:

First of all, if your child has other issues along with hearing difficulties, you may be eligible for a Guest Assistance Card. If your child is in a wheelchair, that is definitely eligible. If your child has issues such as Autism, they may also be given a pass. Speak to someone at Guest Services and explain your situation. They will make a determination about your needs. With a Guest Assistance Card, you generally wait outside the regular line. There is no guarantee that you will enter the ride faster, but you will avoid either the stairs, or standing next to large numbers of people, etc. It doesn’t hurt to ask if you think you need this service.

As for riding fast or wet rides with a cochlear implant, my son has been on almost all of them and never removed his processors. He has been on Thunder Mountain, Space Mountain, The Matterhorn, Tower of Terror, Soarin’ Over California, and Splash Mountain. It is, of course, up to the parent if you want to leave the processor(s) on your child, but I prefer to let my son experience the rides in the way he normally experiences the world, which means hearing with his processors behind his ears. We use toupee tape to hold them on, and I bring a sweatshirt or jacket with a hood for use on these rides. (You could also use a CI retainer like Ear Gear, Critter Clips or Magic Fairy BTE guard barrettes to keep your child's CI processor firmly attached to his or her clothing.) When he was smaller, I would sit behind my son or next to him, depending on the ride, and hold the hood around his head when I saw a drop or sharp turn coming. He does it on his own these days (at age 9). I don’t know that the hood would catch the processor if it fell off, but it makes me feel better. It also keeps the water on Splash Mountain from hitting his processors. On Splash Mountain, my suggestion is to ask to sit in the back. While it doesn’t keep you dry, I have been told it gets the least wet, and so far it’s worked for us. Ask the cast member doing the seating for seats in the back and explain that you need the driest seats possible because of medical equipment issues. Of course you can always remove the device(s). If you plan to do that, I would suggest having a predetermined place to keep them. Some parents carry Otter Boxes for this purpose.

A problem you may encounter with cochlear implants is fountains where children play in the water. Especially during the summer, there are areas where children run around and get wet at Disneyland and California Adventure. It’s good to be aware of that beforehand so you can plan ahead to either avoid them, have a case handy for your devices, or take your chances that your processors are water resistant enough.

Another area of concern that I see is overall noise levels in the park. Will your child be able to hear you? Will it be so loud it annoys him or her? When my son was first implanted, we did turn the volume down at Disneyland because he was still sensitive to sound in general. These days, we don’t do anything different than usual, and even though my son is not the most attentive person in general, he hears us fine. He hears the shows fine too. It seems all seats in the theaters we’ve been to in the parks have good access to sound. There are no special seating assignments for hard of hearing persons.

Finally, since many people might be wondering about meals during their trip, my recommendation is for Wine Country Trattoria in California Adventure. It’s moderately priced, relatively quiet, and you get to sit down and be served. Plus it has a children’s menu, and my kids both love it. In Disneyland, my kids prefer the Hungry Bear Restaurant. While less expensive than Wine Country Trattoria, it’s also more work carrying your food to the table and such. The kids like the view of the water from the area though.

CONCLUSION:

Visiting Disneyland is as fun for someone with cochlear implants as it is for anyone else. There are only a few accommodations available for persons hearing through cochlear implants, and there are no Guest Assistance Cards for hearing disabilities. However, based on personal experience, that doesn’t make much of a difference, at least not to a child. Parents need to exercise their own discretion when deciding which rides they want to let their child go on and whether the processor(s) should be left on or taken off, as they do wherever they go. When in doubt about anything on a trip to Disneyland, talk to someone at Guest Services or seek out a cast member at the ride or show you have a question concerning. The information I have provided here is true to the best of my knowledge, but I make no guarantees. Enjoy your trip!

Rhonda Savage

Mom to 12 year old Audrey, hearing; and 9 year old, Neal, first ci at age 2.9, second at age 7.

*All pictures are from when Neal was 3 or 4 years old and wearing his body worn processor. He wants to be sure everyone knows he’s not that young anymore.

Parents and Professionals: Working Together to Improve the EHDI System

"Still, one of the great omissions in too many intervention programs is the crucial role of parents within the process. Implementing improved systemic protocols and practices which encourage informed choice and the empowerment of families with children who are deaf or have hearing loss must be a fundamental objective to ensure the effectiveness of programs worldwide."

The GPOD (Global Coalition of Parents of Children Who are Deaf or Hard of Hearing) has recently launched a survey for the purpose of strengthening EHDI programs worldwide based on parental experiences within the process. Please take ten minutes of your time to take the survey here:

http://www.surveymonkey.com/s.aspx?sm=5eHe_2bpFgBxwGqaf_2fisWQog_3d_3d

Here are some of the things parents are saying...

"I have a few specific things I would like to bring up. No. 1. I feel that all children should get tested between 6-9 months regardless of whether they passed the newborn hearing screen or not. My son lost his hearing before he was a 1 year old. With a hearing loss that early in life (when a child is unable to tell you they can't hear) it could be devastating when you consider the educational factors. Being able to hear is just as/or more important than the other milestones such as crawling, walking, etc. Most children can now get an ABR without beind sedated so it would be nice to see them get tested in the pediatricians office during their monthly check-ups.



There are still too many kids not getting diagnosed with hearing loss until they are 2, 3, or 4 years old. Another thing, I want to bring up is counseling. I could have used a good counseling session or two to help with the emotions I was feeling, guilt, shame, the grief of realizing that your child is deaf and not knowing where to turn. I asked for counseling and was told I could get it but could only get it from a First Steps Provider (our early intervention program) and that the only ones were over 2 hours away from me! I was already driving miles and miles to doctor and audiology appointments.



I think a counselor should be located in every area of the state for any parent who needs it. It might also help to have that person for sibling issues, etc. I also think that parents should be allowed to mark a box on the whatever they send to the State Department where they live saying if it would be o.k to add them to a list for other parents to contact. I know that we are on that list but I can't get any information. The HIPPA laws make it so no one can give me any information on a child that might deaf/hoh in our area. I have had to seek out parents, have Meet/Greets and send info out to all audiologists to get to their clients. I know that as a parent I would no care to let others know where I am and how to contact me with any questions."

"I can't stress enough how important it is for the information given out by audiologist at the time of diagnosis to be done slowly and sensitively. I don't feel that 'choices' booklet is adequate. There is a lot of information and it's quite overwhelming. Parents are often shocked numb by the diagnosis that any information given soon after that really becomes quite foggy and missed.



There needs to be something done between the time a child is diagnosed and the time before they have to be fitted with hearing aids. In my case it was about 6 weeks. It was six weeks of hell. Not knowing was awful and I had so many questions to ask but had no one to ask, as I hadn't been introduced to anyone from the Early Intervention Services and I wasn't really a client of AH at that point because we were still in transition. This period is incredibly tough on families and I think this period is one that needs to be addressed."

"The professionals we have had the opportunity to work with have been exceptional. We have never felt pressured to make a particular choice and they have been understanding of the challenges we have faced and clear with suggestions and support about how to overcome the challenges. The only time we felt like the professionals were "marketing" their perspective to us was when we visited our cochlear implant centre. There was no pressure to choose their path - but you could see their passion and enthusiasm for what they were discussing and they couldn't help but make their case for their communication option.

Our son is progressing well. We are pleased with our choice and with the people we have to work with. I feel that if we had chosen any other option - we would have been equally as supported through our family service worker who would have connected us to the other resources available to families. The provincial deaf school home preschool program was amazing as well. We wondered if there would be a slant - one way or the other - to their approach but they completely followed the lead of the family decision and adapted the curriculum to meet our needs."

As you can understand by reading, we have a great deal to learn from both positive and negative experiences...please share your stories.

Note: CI Riders are available here.

Two Dad Perspectives on Diagnosis: Deaf

Women are from Venus and Men are from Mars, so how do these differences impact a parent's reaction to the diagnosis of "Your child has a profound hearing loss?" Oftentimes, moms share their reactions and experiences by blogging or interacting on support groups; rarely do we see the male point of view. We thought we would share two "Father Perspectives."


"Swish.
I couldn’t see.
Heavy drops of rain pelted my windshield, lingered, and eventually were pushed aside by the wipers in the fashion of a blinking eye.
Swish.
I saw nothing ahead but a long road of silence.
Of fear. Of Dread.
Swish.

Swish.
I couldn’t breathe.
That long, deep exhale of relaxed contentment, of a world full of bright futures and sunny skies that exists in the world of children was crushed by the dark news of which I had just heard.
My chest is heavy.
Swish.

“Hello? How did it go?”

“He can’t hear.”

I couldn’t hear.
I didn’t want to hear.
It can’t be.
Didn’t he hear me drop the metal dog bowl just the other day?
Remember when he startled to the dog barking?
Say that again?

I can hear the raindrops pitter-patter upon the hood of my car, the growl of the engine, the fast-paced beating of my heart – but my son can’t hear?
He’ll never get to dance to music like his sister holds so dear?
He’s deaf?
Swish.

I was numb.
I was alone.
My wife was alone, learning of this news with no one to hold, finding that all the “I love you” whispers and lullaby tunes had truly gone unheard.
He’ll really never know my voice? Here I was, separated from her by a few miles of road, buckets of falling rain, and seemingly everlasting minutes of helplessness. Swish… Swish… Swish…

Have you ever hugged someone and clung to each other for dear life, feeling as though if you let your grip loosen, if you even just moved an inch, that you’d fall off the face of the earth?

Have you cried on another’s shoulder not for your own pain, but for the struggles you foresee ahead for your boy – girl – loved one?

Have you ever felt utterly helpless when looking upon a child’s eyes…and then being unable mask your fear and talk to that child, to tell them “everything will be ok”?

Ever learned what you want in life more than anything else, only at the very moment that you learn it’s the one thing you cannot have?

Swish.
What did I do?
What can I do?

Nothing.

Swish."

Written by Drew's Dad.
Drew's Mom and Dad write a blog entitled Turn on My Ears
and you can see more incredible videos of Drew's Cochlear Implant Journey here.
(Meet Drew!)


Hearing loss is an international experience. I asked my husband Luca, who is Italian, to write about his life experience with our son Jordan...

The day I became a father was a wonderful day. It was at night, but for me the sun was shining high. The first time you see that little thing, your life changes drastically, but it is a good change.

At the beginning everything was great. He was growing up loved and filled with dreams. We were a happy family.

When we found out that he was deaf, it was like the world collapsed on me. My first thought was, "Why did this happen to him? To us?". Becoming a parent is already a revolution in a man's life. When you hear that your son has a "disability," it is like a sudden wake up.. It is painful at the beginning to accept it.

After the initial shock, Jodi and I started to work hard. She took care of everything involving his therapy, and I took care of everything else.
Jordan is growing up healthy and happy. He is such a sweet, smart and loving boy.

My family is the most important thing in my life. Raising Jordan, I tried to do things that would keep my mind busy while being a good father at the same time. We had to make a lot of sacrifices and one day you realize how much this thing has changed you. My wife and I had a crisis in our relationship. At these times, it feels like a hurricane has run over you.

Our life improved dramatically after Jordan had his cochlear implant. He became more independent and much less stressed. We have had to make difficult choices for him. We did what we thought was right to do for him. We are hearing parents of a deaf child and we wanted him to feel as comfortable as possible in the hearing world, going to public school. We didn't know sign language. I can't really tell you what's the right thing to do, but I know that Jordan is happy and this is all that matters to me.

Looking back at my life, thinking about all I've experienced after my son was born, all the good and bad moments that I've lived... I wanna tell you one thing: if I could go back and I could have the power to choose my son, I would want him the way he is.. I would want him exactly the same, I would not change a dot of him.
He is my son- my perfect, wonderful, deaf son and I love him.

 

Luca, Jordan's father
Posted by Jodi, Jordan's Mom