Man With Usher's Syndrome Travels With Deaf Teens: Destination Costa Rica

Hello,

I wanted to share this exciting new project with you and see if you would be
willing to forward this on to educational people or any students that you
may know across the country.

This program is amazing and changes kids lives. I am a "Lead The Way"
mentor that goes with the kids and helps them on their adventures and life
journey.

The model is proven but it is the first hearing impaired/deaf group we have
taken. We do not have a lot of contacts in the hearing impaired and deaf
community across the country to make kids aware of this opportunity. Since
you live in this world and have access to high school students I am coming
to ask you for help in getting the word out.

Simply sending the attachment flyer and/or posting it somewhere is all that
is required. The flyer is self-explanatory as to next steps.

My name is Bill Barkeley and I am deaf-blind with Usher's Syndrome Type 2.
email: billsmessage@comcast.net

Costa Rica is home to some of most spectacular and accessible rainforests in the world. From parrots to howler monkeys, poison dart frogs to tree sloths, its mountain and coastal ecosystems host amazing diversity. In this Leading the Way program, a combination of high school students who are hard of hearing, deaf and hearing, will learn field science techniques,delve into cultural studies and work hand-in-hand with Costa Rican students on a service project. Along the way, they study ecotourism and learn about sustainability and fair trade issues. In the
process, they build the independence, interpersonal skills, and attitudes that empower students to become leaders in their communities. Through this Leading the Way adventure, you’ll also help raise awareness in your communities and abroad about the culture of deaf and hard of hearing communities. The Global Explorers Leading the Way Program has been featured on ABC Nightline, the Travel Channel and CBS Sunday Morning.

Lead
Step outside your comfort zone as you build your own leadership skills and interact
with students with and without disabilities.

Learn
Explore new cultures, understand global conservation issues, engage in community service and step up to become a responsible global citizen.

Live
Experience the joy of travel and discover the power that you have to make a difference in the world.

Important Details

Application Deadline: November 1, 2008
Application Process:
We seek high school students who are deaf or hard of hearing. You will be joined by a group of hearing students who have been learning sign language for the past year. To apply, contact 877-627-1425 or leadingtheway@globalexplorers.org and ask for an application to the Leading the Way Costa Rica 2009 Program. Learn more at
www.globalexplorers.org by clicking on Costa Rica or reading about Leading the Way.

Nominate a Student: Contact us with the details and we’ll follow up with the student.
Price: $1,995 (We FUNDRAISE with you!)
Travel Dates: Spring 2009

The Global Explorers Experience
If a single trip could change your life, would you take it?

Jr. High Student Participates in Bimodal Study: CI and HA

Not every teenage girl entering her Jr. year has the Jr. Prom or Jr. Ring Ceremony on her mind, some are more worried about helping others who may find themselves in her very same situation as a Deaf individual. To give you an idea of Nichole's thought process in choosing to go bilateral, read her letter to her audiologist:

Hi Marilyn,
My dad asked me if I was willing to give up my remaining hearing in my left ear for a second implant. Definitely!! I would give my residual hearing in an instant because as my little investigations have shown, a CI is about 100% better than a hearing aid. The only hearing (without the hearing aid in) I would be giving up is:
-hearing the water hit my ear in the shower
-myself humming with my hands over my ears
-an MP3 player on Volume 30 (maximum volume setting-I can barely hear it)
So I wouldn't be losing anything really except the title of having a hearing loss.
Thank you for the tip on how to turn off the FM microphone but keep the CI one on. It has made school life a lot more tolerable than before : D
Thanks,
Nichole

This is a video of Nichole's Mapping

And...this is Dean's blog announcing Nichole's participation in the study:

Nichole has been participating in two different research programs. The first is at MIT. They are testing Nichole's hearing ability with her Cochlear Implant. There are a number of different tests they are running. Some deal with her ability to identify vowels, some consonants, others the pitch of musical notes. The main researcher, Ray Goldworthy, who has a single CI himself, is eventually hoping to modify maps to allow CI users to hear better in vaious situations. he even spent some time in Australia at Cochelar learning more about their processors.

The second study is taking place at Northeastern University. Dr. Ying-Yee Kong is the principal investigator on this study, which is looking at people with one CI and one Hearing Aid (HA). They are running similar tests as those done at MIT, but with some variations, including testing in noise. They are interested in testing Nichole, because they want to see how she performs using one CI and one HA, then retest her after her second CI is fully "integrated". The results of this testing will possibly help other single CI users decide if going bilateral is better or if keeping one HA and one CI is best.

Nichole has enjoyed participating in both studies. She likes the idea that all this testing (and it is quite tiring - I know because I enrolled in it as a normal hearing study subject to help out), will eventually help other people struggling with the decision of going bilateral, or staying with a single CI. In addition, she is earning money, which for a 16 year old approaching her coveted driver's license, is a big deal :-), especially at $4 for a gallon of gas.

In addition to the main thrust of the NU study, Dr. Kong recorded Nichole speaking in order to determine if her speech generation improves, declines or stays the same after going bilateral. Here is a 3.5 minute long MP3 sound recording of Nichole telling a story. They gave her just the starting point, and told her to make up a story on the fly (thus some "ums" as she pauses to figure out where to take the story next).

I thought some parents of smaller kids would be interested in hearing how Nichole speaks. Keep in mind that she was not diagnosed with a hearing loss (70dB flat - moderate-severe bilateral sensori-neural hearing impairment) until 18 months old, and only spoke a handful of words to that point. She started wearing hearing aids at 20 months. We did Auditory Verbal therapy until she was 3 years old (though of course we continued doing it at home). Her hearing stayed at that level until her teenage years, when it started getting worse. She was at about a 100dB loss when she/we decided to get her first implant (right side) at age 15 (last year). This recording was made on July 2, 2008, just before her surgery to implant her left ear.Of course, I understand Nichole perfectly, but I would really like to hear from other parents to see what they think of her speech. Does she sound "normal" to you, or can you tell she has a hearing problem? I am too close to tell. Any comments?
(To listen to Nichole speaking click on Dean's Blog and download audiofile)

Note: I'm back from Dublin. My kids hugged and kissed me BEFORE asking for presents...We're definitely making progress.