Sunday, September 01, 2013

American Sign Language Resources

If two of my boys weren't deaf, I probably wouldn't have learned sign langauge. Because they are deaf, we have learned sign language to communicate with them. Their cochlear implants may give them access to sound, but my sons are still deaf. Big Kid primarily uses oral/aural communication, but when his CI comes off he relies on lip reading and sign language for communication. T Man can hear with his CI, but communicates better with sign language.

Here are some online tools I've found useful when learning American Sign Langauge:

ASL Dictionaries: http://www.aslpro.com/

Michigan State ASL Browser: http://aslbrowser.commtechlab.msu.edu/browser.htm

Everyday ASL YouTube Channel: http://www.youtube.com/everydayasl

Deaf Missions Lending Library: http://www.deafmissions.com/?PageID=28

Easy Lesson Plans (some free/some $): http://www.lessontutor.com/ltstore1.html

ASL Dictionary of Religious Words: http://valleybible.net/DeafMinistry/ASL_Dictionary/asl_dictionary.php

ASL Style Religious Videos: http://www.aslbible.com/new.html

ASL Hymns (LDS Site): http://www.lds.org/cm/display/0,17361,7208-1,00.html

28 Songs in Sign Language: http://www.elijah.org/liftuphands/

My list here is something I've used in the past when I taught basic sign language to children, and may be a bit dated. I've also used these sites when trying to learn religious words, to help my son through classes at church. There are many more wonderful sign language sites. If you have more to share with me and others who view this site, please post the links in the comment section of this section. Thank you!

(*Few people comment here, but according to the site stats, this blog is getting hit quite a bit every day, from readers all across the US and many other countries. PLEASE share any other resources that you've found helpful, so we can all use them, too. THANK YOU!)


 

Thursday, August 29, 2013

YEAH! AB Naida passed FDA approval!

WOO HOO! To 99% of my Facebook friends, this won't mean much. But this is GREAT NEWS to those of us who need cochlear implants (or in my case a mom of two CI boys)! Big Kid's activation is next Tuesday. This is the latest processor that just passed FDA approval YESTERDAY (been in use in Europe already). I wonder when they'll have it available for him? Hmmm... :)

*****Advanced Bionics Naída CI Q70 Review*****

Advanced Bionics Announces FDA Approval of the Naída CI Q70 Sound Processor


-- The World’s Newest, Most Advanced Behind-the-Ear Sound Processor Receives Regulatory Approval for Commercial Release in the United States--

VALENCIA, Calif., August 28, 2013Advanced Bionics (AB), a global leader in cochlear implant technology and a company of the Sonova Group, announced today that the new Naída CI Q70 (Naída CI) sound processor is commercially available in the United States. Earlier this year, the Naída CI processor received regulatory approval for distribution in Europe, Canada and several other countries in the world.

The innovation DNA of AB and Phonak have merged together for the introduction of the world’s newest, most advanced behind-the-ear sound processor. With Naída CI, AB delivers a quantum leap forward in performance and wireless connectivity with a chic, modern instyle™ design. Now cochlear implant recipients have access to the combined technologies of the innovation leaders in cochlear implants and hearing instruments.
 
“While AB is unique in our tireless focus on performance, we also understand that people want to wear beautiful products. With Naída CI, we have delivered a quantum leap forward in performance and wireless connectivity in a small, attractive package”, said Hansjuerg Emch, President of Advanced Bionics and Group Vice President of the Sonova Medical Division where AB resides. “We are especially excited to deliver a world first—the combination of the most advanced cochlear implant technology with state-of-the-art Phonak technology available in hundreds of thousands of hearing instruments. If you use Phonak products and get a cochlear implant from AB, you now have the opportunity to enjoy many of the same Phonak features and accessories.”
 
Naída CI offers a full performance package:
 
*55% improvement in speech understanding in noise1 when AB’s ClearVoice™* technology and the Phonak UltraZoom feature are used together
 
*100% wireless connectivity to consumer electronics with the AccessLine™—streaming from Bluetooth devices, phones, and countless other popular products by leading brands, including Apple, Samsung, and Nokia. A bimodal first, media can be streamed to a compatible Phonak hearing aid and a Naída CI sound processor at the same time!
 
*40% smaller than the previous behind-the-ear sound processor—incredibly lightweight and featuring the industry’s only instyle™ design
 
*Proven AB technology, including ClearVoice, AutoSound™, HiRes Fidelity 120™* and HiRes™ Optima* sound processing
 
*All-new, discreet T-Mic™ 2 microphone
 
*IP57 rating for outstanding water and dust resistance
 
“When I used UltraZoom with my Naída CI processors in the noisy kitchen at work, the voices of my colleagues became so comfortable and understandable. I could follow the conversation very easily,” said Stefan Fredelake, AB recipient and employee. “The UltraZoom feature is really fantastic and will make my life so much easier in many noisy situations, not only in kitchens, but also in restaurants, in trains, and many other challenging listening environments.”
 
For more information about the Naída CI sound processor or Advanced Bionics, contact a local AB representative or visit AdvancedBionics.com.
 
About Advanced Bionics
Advanced Bionics is a global leader in developing the most advanced cochlear implant systems in the world. Founded in 1993 and a subsidiary of the Sonova Group since 2009, AB develops cutting-edge cochlear implant technology that allows recipients to hear their best.
 
AB offers the most sophisticated cochlear implant system on the market, the HiResolution™ Bionic Ear System, with five times more sound resolution than its competitors, designed to help recipients hear in noisy settings and enjoy the full dimensions of music.
 
With sales in over 50 countries and a proven track record for developing high-performing, state-of-the-art products, AB’s talented group of technologists and professionals from all over the world are driven to succeed, work with integrity and stay firmly committed to quality.
 
To learn more about AB and its innovative cochlear implant technology, please visit AdvancedBionics.com.
 
1. Hehrmann P, Fredelake S, Hamacher V, Dyballa K-H, Büchner A. Improved Speech Intelligibility with Cochlear Implants Using State-of-the-Art Noise Reduction Algorithms. Speech Communication; Proceedings of the 10th ITG Symposium, 09/2012.
 
Apple® is a registered trademark of Apple Inc.
Samsung is a registered trademark of Samsung Electronics Co, Ltd.
Nokia is a registered trademark of Nokia Corporation.

Sunday, August 04, 2013

My Son, the Cyborg

When Big Kid was first implanted, I knew very few people who understood what it meant to have a cochlear implant. Fortunately I met some implanted adults and parents of implanted children who could help explain to me what was happening to my child. I also read Michael Chorost's book, Rebuilt. Michael Chorost used the word "cyborg" throughout his book.  At this time my son was already fascinated with robots, and even chose to be a robot for Halloween. My son is a cyborg.

An article by Michael Chorost was published a few months ago,  in which he discusses his use of the word "cyborg" in his books: Why I Walked Away from the Word "Cyborg", Psychology Today, March 19, 2013. His article intrigues me enough to want to read his second book. What stuck out to me most in the article, though, were his thoughts about the changes to his life because of his cochlear implant:

"A few weeks after I went deaf, my audiologist handed me a cochlear implant that had been opened up so that the circuitry was visible. It was shocking. This thing, this circuit board, this maze of chips and wires and resistors, was going to go inside my head. Permanently. That was scary enough, but what was even more intimidating was knowing that it would forever change the way I perceived the world. It wouldn't give me normal hearing. It wouldn't even give me back the poor and partial hearing I’d had since birth. Things would sound completely different in a way that no one could describe to me.

My body was about to change in a way that it hadn't since puberty."

My son faces enough challenges in life with being a military child, constantly moving, changing schools, making new friends. The cochlear implant sticks out on his head, and is an obvious sign to other that he is DIFFERENT.

As a mother, I'd like my son to be "normal" and not stick out from other children as different in any obvious way. With the cochlear implant this is nearly impossible. Over the years, though, I've accepted that there is no true "normal" in life. I've taught each of my sons that we are all quite different from each other, and that some people have differences that are more obvious than others.

Despite Big Kid's longer hair, his second cochlear implant will make it even more obvious that he is different, that he is a "cyborg". He is also a high school student who texts his friends, studies geometry, Arabic and AP History, and is looking forward to swimming in the pool with his new waterproof cochlear implant. There was no parenting manual to help guide me through these unique child rearing challenges. Big Kid will have his second cochlear implant activated in about a month, and we are very excited. ;)

Saturday, August 03, 2013

Habilitation Post CI Surgery

Cool! The kiddo gets an implant! Let's video tape the CI activation to share with the world. They're going to hear sound for the first time, right? Well... not quite. I remember both of my boys' first CI activations. The audie started up the computer, sent some sounds out through the computer-CI hook up, and both boys looked as if they hadn't heard a thing. My heart just sunk. Then I remember with Big Kid when the audie pointed out, "Look at his face. When the sound is transmitted, his face turns bright red." WOW, did it EVER! His brain was definitely getting input, just didn't yet know what to do with that input.

Now he's going to get his second cochlear implant, in three short days. About a month or so later his second implant will be activated and hooked up to an external processor, but it will still take time for his second ear to learn how to hear the sound. After activation, I will be driving him up weekly for "ear therapy" and remapping of his CI program as needed. Woo hoo! Three hours of driving for a one our appointment each week (she types sarcastically)!

The point is that the cochlear implant is not a "cure" for deafness. While his ear will be able to access sound through the nifty cochlear implant tool, he is still deaf. To access that sound properly, his ear will have to do tons of ear-aerobics, listening exercises to help his brain understand sound. Big Kid will have his therapy through the implant center, he will wear both implants most of the time, and at other times he will wear only the implant over his newly implanted ear, all in the name of post-implantation habilitation therapy. This process takes time, commitment, consistency, bottom line...a lot of work.

One of my favorite tools I've come across when it comes to sound/word recognition is TumbleBooks. According to the TumbleBooks website: "TumbleBookLibrary is an online collection of TumbleBooks – animated, talking picture books which teach kids the joy of reading in a format they'll love. TumbleBooks are created by adding animation, sound, music and narration to existing picture books in order to produce an electronic picture book which you can read, or have read to you."  Simply put, TumbleBooks presents books read aloud, with the words highlighted as they are read. This service is available to everyone, for a fee, but fortunately free to us through many libraries in the US.

Over the years we've accessed TumbleBooks through local libraries and Army Knowledge Online (AKO), but now can access it through MyArmyOneSource.com. If you are an Army family who would like help accessing this online resource, please send me a note and I'll help you out. Here are some screen captures from TumbleBooks (click on photo for larger view):

 

 

 

Now for a slightly humorous "first sounds" story... When Big Kid was first activated, he freaked out after we started the minivan to head home. Instead of taking off his CI, we turned down the volume right away, then turned it back up gradually on the two hour ride home. Once home he ran to the toilet and laughed hysterically when he heard himself "utilize the facilities" for the first time. We were rolling on the ground laughing, until he flushed the toilet. His mouth dropped open, pure terror on his face, and he screamed and ran out of the room because the sound scared the heck out of him.

On a slightly less embarrassing note, I remember telling him "I love you" for the first time post-CI activation, and realizing that was the first time in over three years he probably heard me say those words. That was nothing to hearing him actually say the words himself some time later. After much work, his implanted ear not only learned what sound was, but now very well understands speech and even music.

Bottom line... The CI is not a cure. Post implantation involves a bunch of work and some frustration, but it's worth it. It's all worth it. Twelve years after his first cochlear implant we can't stop Big Kid from talking...and talking...and talking... I don't know what exactly will happen with his second cochlear implantation, but we are well prepared for the work that comes after surgery. ;)

Friday, August 02, 2013

Cochlear Implant Surgery Video

I just watched a cochlear implant surgery video on YouTube. You might think I'm crazy, since my son's second implant surgery is only five days away. This just seems natural to me. My mother was a nursing instructor when I was growing up. I used to look up anything and everything in the manuals she had lying around the house. Majoring in Biology later in college, I've seen a few more textbooks and have myself done a fair share of dissections (my lab partner was the local PETA chapter President, so I did ALL of our dissections). While the sight of blood still makes me a little weak in the knees, it almost makes me feel better to have visually watched a video like this again. Knocking my son out with general anesthesia bothers me more than the actual surgery.

Not for those with weak stomachs, but here's a link to the video. The video is quite technical, not too graphic, with the physician talking through each step of the surgery. I believe the implant in this video is the same one that my boys already have over their right ears. Big Kid's original internal processor had a slightly different configuration of the processor, with deeper drilling into the skull to embed it in place. The internal part and surgical process have changed enough that I could hardly see any scarring on T-Man's head post surgery, or feel the internal processor under his skin now.

Before each of the surgeries people have asked me questions like, "Will they drill into your son's head?" "Is it brain surgery?" "Where does the implant wire go?" I'd just don't like talking about the actual surgery with other people. I'd rather have someone watch a video, whether an animated video describing what an implant does or a video of an actual surgery. Maybe after the surgery is done I'll be less squeamish when talking about it, probably not.

May God guide the hands of all those involved in my son's upcoming surgery. May he heal well, and someday hear with his left ear. We are thankful for the technology which give our sons access to sound.


Wednesday, July 31, 2013

Reality Check

It happened. Someone dropped a big ball which would lead to postponing my son's surgery for at least two months. Well, this is actually the second time the ball was dropped, but this time we're out of wiggle room. Did Ticked-Off-Momma-Bear-Me yell at anyone to make something happen? NO. I took a moment to calm down, made a couple more phone calls, was on my nicest, best behavior, and managed a fix.... Hopefully. The young gentleman who has been helping me picked the ball back up and fixed the problem, hopefully.
 
At the end of the conversation we just had he said, "If you need anything else, please don't hesitate to call me." I replied, "Well, thank you, sir, but if you hear from me again, it will be face-to-face because if those documents aren't delivered by tomorrow morning, I'll be picking them up by lunch and hand delivering them myself." That would be a quick VA-Philly-Baltimore-VA trip that I would rather not make.

The cochlear implant is a miracle and the insurance is wonderful, but I am just so TIRED of chasing loose ends every time we move. New schools, doctors, paperwork, files...

One foot in front of the other, breath, repeat with other foot, keep moving forward...

Lessons for the Day: Keep copies of everything, all paperwork, in physical and digital formats. Keep records of people with whom you have spoken on the phone, the number called, the date and time called, and notes of what was said. When papers are being sent, when you are told "it's in the mail", get a tracking number and TRACK the package. When the package hasn't been sent, call back in your nicest, firm voice, armed with all of the notes you've been keeping, and get to the bottom of whatever went wrong. Take more notes.

Tuesday, July 30, 2013

Video: How a Cochlear Implant Works

My son has a spiel he goes through when telling people about how his cochlear implant works. He's been doing this since he was three, and is very good at answering questions, too. Yes, I'm still hoping he'll post soon, but he's getting ahead on some classwork before his surgery next week.

In the meantime, here's a very nice, short video describing how a cochlear implant works. It doesn't matter how long we've been living with cochlear implants, I am still in awe of how the technology can bring sound to many deaf people.



Maybe I'll just compose a list of questions for my son, to get him ready to talk about his implant. What would I ask him? Hmmm...