The CI Circle News

Star Can’t Hear Cheering Crowd

2011-11-04T16:33:00.008+01:00

Dayton Daily News
By Tom Archdeacon, Staff Writer
Star Can’t Hear Cheering Crowd

ARCANUM — In the last home game of his extraordinary high school football career, Arcanum senior Dustin Shiverdecker will do everything — except for one thing — that a guy could do tonight.

He’ll play halfback against visiting Covington. On defense, he’ll line up at outside linebacker. If the Trojans need him to switch to cornerback, he’ll do that, too. He’ll handle the kicking chores. And the punting.

He’s one of Arcanum’s most versatile players and one of the big reasons the team has turned around its season. After opening 0-3, it has won five of its last six games.

And tonight, when the Trojans marching band takes the field at halftime, he very well could be out there with it performing “Sweet Caroline,” the White Stripes’ “Seven Nation Army” and Taio Cruz’s “Dynamite.” He’s a member of the band’s percussion section, and the only time he doesn’t join it is when he’s playing football.

The guy everyone calls Shivy is one of the most popular students in the small Darke County school. Besides football, he’s a standout wrestler, a sprinter on the track team and one of the top long jumpers in the Cross County Conference. He’s also a budding cook and something of an artist and, as football coach Jason Stephan put it, “He’s one of those guys you enjoy being around, both as a coach and a teacher. He’s just a terrific kid.”

That’s why folks will be cheering tonight when he escorts his parents, Ryan and Angel, onto the field for Senior Night festivities. Unfortunately, though, he won’t be able to hear that heartfelt salute.

He’s been totally deaf since birth.

Although at age 5 he was fitted with a cochlear implant — a surgically affixed electronic device that his dad said gives him up to 85 percent hearing of a sort in one ear — he doesn’t wear it during football games.

“We tried it freshman year but the moisture under his helmet made it shut down,” said his mom. “We tried cleaning it and changing batteries, but it just kept going out.”

So now Dustin plays football by relying on reading lips, hand signals — a sort of gerrymandered sign language the players and coaches came up with — and moving when he sees the snap of the football.

The system is working. As a running back, he has 386 yards on 77 carries this season. As a defender he has 59½ tackles in nine games. He ran for a decisive touchdown in a victory over Bethel last week. In the come-from-behind 15-12 upset of Ansonia this year, he scored all the Trojans’ second-half points, kicking a 23-yard field goal and then wrestling a 16-yard touchdown reception away from a defender in the end zone.

When he makes a big play at home games, Dustin instinctively looks up to the top corner of the bleachers and finds his mom, who stands there reflecting the roar of the crowd in her smile and then quickly relays an “atta-boy” with some sign language of her own.

“I can’t hear the cheers,” Dustin said, “but I always look for my mom and her reaction lets me know, and I feel good.”

A big decision
When Dustin was a baby, his parents sensed something wasn’t quite right because he didn’t always respond like he should. Angel said by the time he was 3, they were told he just needed tubes in his ears.

“We got them, but two weeks later we took him in for a check-up and right off they said, ‘Your son is deaf.’ At first we were devastated. It was like, ‘Where do we go? What do we do?’ We didn’t know anybody and Ryan and I were so young as parents, but we just tried to grasp all the information we could.”

As he thought about those times, Ryan just shook his head.

“We went to Children’s (Medical Center). We went to Cincinnati and met the deaf community there. And then we heard about cochlear implants and met with some people who had them.”

In the process they stepped into an often heated debate — manualism vs. oralism — that goes back some 300 years in the deaf community. One group believes deaf students are better educated through sign language. The other believes in education through spoken language.

“We took Dustin to a school for the deaf in Cincinnati and they wanted to keep him there during the week and then we could come get him and be weekend parents,” said Angel, who is a child support investigator for Darke County. “We fought that. We said, ‘No, he’s part of our family and we’ll parent him at home.’ We’re a hearing family and we wanted him to be part of that, not separated from us.

“We did a lot of soul searching on what to do. The deaf community pretty much hates cochlear implants. To them it’s like turning your back on that culture, but we decided to go that direction because Dustin’s life here, the community here, is all hearing and we wanted him to be a big part of it.”

According to the National Institute of Deafness and Other Communication Disorders, there were some 28,400 children in the United States using cochlear implants as of last December. Although the sound that’s provided isn’t as rich as natural hearing — and can be difficult to decipher in noisy settings — it works, as 5-year-old Dustin found out in jarring fashion when doctors first fitted him with the device and turned it on.

You’ve got to remember he’d never heard anything until then, so when they turned it on there were suddenly all these different sounds and he cried and pulled at the thing to get it off,” Ryan said. “But then everything became a new experience. He heard a bird and it was like, ‘What the heck was that?’ ”

From kindergarten through his sophomore year in high school, Dustin was accompanied by a woman who was his classroom interpreter. The past two years, though, he has gone without her because Ryan and Angel and most of the Arcanum teachers thought Dustin could handle school on his own and they felt sometimes an interpreter was a crutch he could fall back on.

While Ryan went to football practices when Dustin first joined varsity to help with communication problems — and Angel still accompanies him to various school conferences, the most recent a meeting with the Jostens representative who was explaining class rings — the couple has stressed that their son tackle things on his own.

Sports has helped, and over the years Dustin has taken part in almost everything Arcanum has to offer. Along the way, though, there have been a couple of rules.

“No quitting anything halfway,” Ryan said. “You start something, you finish it.”

Stephan said the couple also instructed the coaches not to treat their son any differently than they would anybody else: “They said yell at him the same as you would anybody else. Demand the same. Don’t expect any less.

“Sure, there have been times when it’s been frustrating for Dustin and for us because of a communication barrier here or there, but we’ve always gotten through it.”

‘The right attitude’
Had you been at football practice the other day, you would have seen two of the Trojans assistant coaches — Doug Morris and Jason Hart — giving Dustin face-to-face instruction before many of the plays.

In the classroom, the learning has sometimes gone in the opposite direction as well, said band director Doug Albright:

“Dustin is one of those kids where it’s a growth experience for you to have him in your group. I hear people coming into the classroom grumbling about this or that, but I’ve never seen him that way even one time. I’ve just never seen him act like he’s having a bad day. He has the right attitude.”

And that’s what Stephan said he’ll remember most: “A lot of kids could learn from him. I think of how many might have an ailment or a disability or have been told they can’t do something, so they just accept that. Dustin never has. He just works hard and perseveres.

“After this I know he’ll be successful in life because of the way he’s tackled the challenges here. I really think he could play at a small college somewhere, especially if he just concentrated on one position. Here, in a small school like this, when you have a kid with that kind of athletic ability and aggressiveness you’re forced to play him as much as you can.”

Should the Trojans topple unbeaten Covington tonight they will make the playoffs. But regardless, this will be the last game for Dustin on the Arcanum field.

“Friday night I’ll be sad,” Angel said. “He has done so many things out there — just like in the rest of his life — that have amazed me. It’ll be rough to see it end. I’m sure I’ll be in tears.”

Ryan, who works on the chain crew during games, shook his head: “I’m not really sad. I’m just ready for the next thing in life for him. He impressed me as a child and all through high school, so I want to see what he’s going to do next. He just keeps impressing people.”

No one put that more succinctly than Morris, the Trojans’ defensive coordinator:

“I think a lot of folks here are like me. I don’t look at Dustin as a deaf kid. He’s just a kid. ... One heck of a kid, really.”

The $99 Connexin-26 genetic test

2010-12-12T21:27:00.023+01:00

For a limited time, personal genomics company, 23andMe, is offering their complete health and ancestry DNA analysis for only $99 (plus a $5 monthly subscription fee - offer ends 12/25/2010.) The regular price is $499, so that is a savings of $400. For $99, you can learn if you have a genetic predisposition towards many different diseases, or if you are a carrier of a gene that could result in a condition in your child.

Included in the 23andMe test is a carrier status report for two of the most common mutations in the gene coding for connexin 26. Hearing losses caused by mutations in connexin 26 are common, and might account for half of all cases of hereditary hearing loss that are not part of a syndrome. This type of hearing loss is almost always inherited in a recessive manner, which means that both parents have to have a copy of a deafness-causing connexin 26 variant. For more information on how common connexin 26 is relative to other causes of hearing loss and deafness, visit the Boystown site.

Part of a carrier status report from 23andMe

It is important to know ahead of time that 23andMe tests for only two of the most common connexin 26 versions - the 35delG version common among people of European descent (and present in approximately 1 in every 50 Europeans) and the 167delT mutation, common in people of Ashkenazi Jewish descent. They do not test for other variants, including the one that is common in Asia, or the many different but less common European ones.

If you buy the test, you will get a special test tube in the mail that you will spit into. After you spit, you mail that back to the company and they will analyze it and then let you know when the results are ready in about a month or so.

The ancestry component of the 23andme analysis can help you learn about your heritage and connect you with other 23andMe subscribers who share stretches of DNA with you and who are your distant cousins. People who are interested in researching their family history (as well as people who are adopted and don't know much about their history) can get some interesting information from this part. There is a discussion board at 23andme where people talk about results.

Matches to other 23andMe users by chromosome using the Ancestry Finder tool

If you have always wondered where you came from, where your hearing loss came from, or if your child's hearing loss is caused by connexin-26, this seems like a way you could possibly find out, and at the same time, learn more about yourself in general.

23andMe also has a blog where they post new findings in the field of genetics and describe how parts of their service work. Check it out at http://spittoon.23andme.com/. If you'd like to read about recent connexin 26 research, see our blog entry from February, 2010: New Connexin 26 Research: Does Hearing Worsen?

Update added 12/26/2010: The sale is over, but I just came across the following article, "How 23andMe Saved My Wife" about a cancer gene that 23andMe screens for.

Please Vote for the John Tracy Clinic

2010-12-03T21:14:00.005+01:00

The John Tracy Clinic is in the running to win $250,000, through the Pepsi Refresh Project, to help create miracles - small, deaf children that never stop talking. *smile*

JTC did amazing things for our family and we will do whatever we can to help families walking a similar journey.

Please take a short moment (every day in December) to vote and then share this message with your family and friends.

http://www.refresheverything.com/jtc

Although we'd really love for you to support JTC, if there is something you feel you'd rather vote for, that would be okay too.

There are thousands of awesome ideas!

Thank you!

Article: "Music by People who Can't Hear"

2010-11-15T19:07:00.000+01:00

Music by People Who Can’t Hear

Listening in.

* By Robert Sullivan

The Association of Adult Musicians With Hearing Loss held its first New York concert recently, at the Bruno Walter Auditorium in Lincoln Center, with a program entitled “Incredibly Musical and Significantly Deaf: More Music With Less Hearing.”
Charles Mokotoff, a classical guitarist who has a day job working in IT with the National Institutes of Health, was up first. Among his pieces was one by Edin Solis, a young Costa Rican composer whom Mokotoff communicates with via e-mail. Later, Jennifer Castellano played a tonal piece called Spectrum, Seven Preludes for Piano, which she composed after seeing Spectrum V, a painting by Ellsworth Kelly, at the Metropolitan Museum. It was reminiscent of the more percussive sections of Keith Jarrett’s 1975 improvisations in Köln, Germany, though more optimistic. If you had walked in during either performance, you wouldn’t have guessed that either performer was deaf or hearing impaired.

Click Here to read full article.

Interesting Article on Deaf Athletes and Strategies

2010-11-06T13:47:00.000+01:00

Noise makers
How deaf athletes deal with noise as part of game strategies
By Carmen Renee Thompson
ESPN The Magazine

Tune it all out. That's the mental approach most athletes try to take in pressure situations. Screaming fans, trash-talking opponents, the drumbeat of feet on bleachers ... it's all just white noise. Or so they say. But what if you can't hear any of it? What if you can't hear a coach's instructions or your teammates calling for the ball? What if you live in a world with little or no sound? Nearly three out of every 1,000 American children are born deaf. And that got us thinking: What's it like for athletes who are deaf to compete at an elite level? We caught up with five of them, who shared their strategies for thriving in silence.

Click here to view full article.

Back To School: Helpful Information on Hearing Equipment

2010-09-01T21:31:00.010+02:00

The following information was put together by this Mom and sent to school with her son on his first day of preschool. The child currently wears a hearing aid in one ear and Advanced Bionics CI (w/body worn processor) in the other. Feel free to use and modify it as needed!

My child is deaf in both ears. He wears a hearing aid in his left ear and a cochlear implant in his right ear.

Parts of the hearing aid:
• processor (hangs behind his ear)
• earmold (fits into his ear canal)
• plastic tube (connects processor to ear mold)
• microphone (at top of processor)
• red indicator light (on back of processor)
• controls (on back of processor; disabled for pediatric use)
• battery compartment (at bottom of processor)

Because the controls are disabled, the only way to turn the hearing aid on or off is to open or close the battery compartment.

To take the hearing aid off:
• Pull gently on the earmold, toward the back of his ear. (Don’t pull on the tube.) Remove the earmold from his ear.
• Slip the device off of his ear.
• Open the battery door by pulling at the little tab that sticks out.
• The red indicator light should go off.
• Store the hearing aid in the case provided.

To put the hearing aid on:
• Put a small drop of lubricant (Oto-Ease) on the earmold and smear it around.
• Work the earmold into his ear until it is fully inserted into his ear canal.
• Lift the processor over his ear so that it hangs behind it.
• Close the battery door.
• The red indicator light should come on.
• Ask my child if it sounds all right.

Feedback:
If there is a high-pitched squealing sound, this is feedback caused by amplified sound leaking out around the edges of the earmold and feeding back into the microphone.
• Push the earmold more firmly into his ear so that there are no gaps around it.
• Even if the earmold is seated properly, you might hear some feedback if he puts his hand (or another object, like a hat) up around the microphone. Adjusting the position of the object should eliminate the feedback.
• He can’t hear the feedback and it doesn’t bother him. It’s just a nuisance for others.

Protecting the hearing aid:
The hearing aid could be damaged if it gets wet or if it is dropped onto a hard surface. If it’s raining out, my child should wear a hat and/or be under an umbrella. (He can be in a light mist for a short time without protection.) It’s usually safe for him to wear it at a water table, as long as there isn’t a lot of splashing. He should never wear the hearing aid during swimming, bathing, or running under a sprinkler. Care should be taken that other children do not grab the hearing aid off of his ear or attempt to handle it.

Parts of the cochlear implant system:
• implant (under the skin behind and slightly above his right ear; you can’t see it)
• headpiece (plastic disk that attaches with a magnet to the skin over his implant)
• cable (runs from the headpiece down under his shirt to the processor)
• processor (worn in a harness under his shirt)

How it works (roughly!):
• Sound is picked up by a microphone on the headpiece.
• It is carried by the cable to the processor.
• It is digitized, processed so as to optimize speech perception, and turned into a signal that can be sent to his auditory nerve.
• This is sent back up the cable to the headpiece.
• The signal is broadcast across the skin to the implant, which fires electrodes that are inserted into his cochlea and stimulate the auditory nerve.

To take the CI equipment off:
• Slide the processor out of the pouch on the harness.
• Remove the headpiece from his head (the processor will start beeping).
• Turn the program dial on the processor to the off position (it will stop beeping).
• Gently guide the headpiece and cable out of his shirt. Be careful not to tug too hard on the cable.
• Put all of the equipment in a safe location.

To put the CI equipment on:
• Run the headpiece and cable (they should stay attached to each other, and to the processor) under his shirt and out through his collar.
• Turn the processor on by turning the program dial from the off position to Program 1 (1 dot). The processor will start beeping.
• Watch the indicator light, located near where the cable plugs into the processor. It should blink red quickly, 3-4 times, to indicate that the battery is strong. If it only blinks once or twice, the battery is low.
• Attach the headpiece to his head by placing it against his skin behind his ear and feeling around until the magnet clicks into place. The processor will stop beeping. Make sure the cable is not twisted or kinked, or caught on his harness.
• If the system is working properly, the indicator light will blink green whenever it receives a medium-to-loud sound. Say “ba-ba-ba” and watch the light.
• Ask my child if it sounds all right.
• Put the plastic cap on the processor and push it down into the pocket on his harness.

If the processor starts beeping:
• If it beeps at a regular frequency, about once a second, this means that the headpiece has come off his head. Just put it back on.
• If it beeps intermittently, this probably means that the battery is making poor contact or is running low. First try wiggling the battery in its compartment to see if that seats it better. If the beeping persists, turn the processor off and then back on and watch the indicator light; if it flashes 3-4 times (in red, quickly), the battery is strong. If it flashes 1-2 times, the battery is getting low. Replace it with the back-up battery that we provide. (A single battery should last all day, but sometimes they don’t charge properly at night.) Another thing to try is to take the battery out and put it back in to see if it makes better contact.
• If it doesn’t seem to be a problem with the battery, it may be that another part of the system is failing (the cable or headpiece). If it’s early in the day, please contact us so that we can try to fix the problem and he doesn’t go without sound for a long time. If it’s late in the day, wait until we get there. If he seems to be hearing all right, let him continue to wear the equipment. If the equipment is clearly not working, take it off and store it until we get there.

Protecting the CI:
Just like the hearing aid, any part of the CI could be damaged by water or a hard blow, and the same care should be taken to protect it. If my child plays at a water table, he should wear an art smock to protect the processor under his shirt. There is also a slight risk of damage to the CI from static discharge, which can occur if he goes down a plastic slide or through a plastic tunnel. We don’t want to forbid him from using such play equipment, so we’re willing to take some risk. When possible, try to ground him when he gets to the bottom of a plastic slide by tapping his leg or hand (not his head), but we understand that this is not always practical when caring for many children at a time.

From Their Mouths...

2010-08-12T18:12:00.001+02:00

CI AM A ROCK STAR!!! VOTE NOW!!!

2010-04-18T20:01:00.004+02:00

Music Video for Do Something Battle of the Bands Raises Awareness of Importance of Music Education for Kids with Hearing Loss

Students enter unique video in DoSomething.org and the VH1 Save The Music Foundation Battle of the Bands contest to raise awareness of importance of music education while reducing stigma associated with kids with hearing loss; use Jonas Brothers tune as inspiration.

Jericho, NY (PRWEB) April 12, 2010 -- Following up last year’s first place award in the American Speech-Language-Hearing Association’s Better Speech and Hearing contest, Jericho High School graduate Mel Paticoff re-worked her video, “That’s Just the Way We Hear,” based on a Jonas Brothers tune, to create a new version for DoSomething.org’s Battle of the Bands contest highlighting the importance of music education. “That’s Just the Way We Hear 2” also aims to reduce the stigma associated with kids with hearing loss by demonstrating that they are able to speak, sing as well as hear with the assistance of hearing aids and cochlear implants. Two of the participants are deaf and use cochlear implants to hear.

Producer, songwriter and videographer Mel Paticoff feels strongly about the message of her video. "Teaching deaf and hard of hearing students to learn to love music can improve both their auditory listening skills as well as their social skills. This is definitely where music education money should be spent,” says Mel. As a Fontbonne University student in St. Louis, Missouri, Mel is studying to become a teacher of the deaf and has recently become a children’s book author. She has had years of experience working with deaf students both formally and informally. Her cousin, Julie Rosenthal, is one of the two deaf singers with cochlear implants in the video. Julie was late-diagnosed with her hearing loss at the age of two and spent several years undergoing intensive language therapy at an oral deaf school to learn how to talk.

Teaching deaf and hard of hearing students to learn to love music can improve both their auditory listening skills as well as their social skills. This is definitely where music education money should be spent.

“That’s Just the Way We Hear 2” is open captioned for accessibility and showcases eight Jericho elementary, middle and high school students who play piano, guitar, drums and trumpet while singing an original song to the tune of the Jonas Brothers’ “That’s Just the Way We Roll.” Mel’s sister, Dani Paticoff, a vocal student at Long Island High School of the Arts, developed the base guitar and vocal tracks and displays her talented voice on several solos. The video’s view count has risen rapidly since it was posted on YouTube and at the Do Something website where voting takes place. The organization also featured the video in its email newsletter, citing it for “highlighting the power of music to raise awareness about different issues, break down stigmas, and impact the lives of the hearing impaired.”

Support the students in their endeavor to win and raise awareness about hearing loss and the importance of music education. View and rate the video online at http://www.dosomething.org/bands/entry/sophies-tales You can also show support by blogging, tweeting on Twitter and posting the link on Facebook. While the Battle of the Bands competition ends on April 16th, you can still help by continuing to pass the word on. For more information about Mel Paticoff, visit her website, Sophie’s Tales at http://www.sophiestales.com

Cochlear's Hearing Hero Award Goes To...

2010-03-22T23:33:00.004+01:00

On behalf of all members of CiCircle, I would like to congratulate Miss Rachel Chaikof for winning Cochlear’s Hearing Hero award.

Rachel started advocating for others like herself at a very young age and has continued to devote much of her time to cochlear implant awareness. I can’t imagine having accomplished what she has in her short twenty three years. As a young college student, dealing with her own day to day hurdles, she still manages to dedicate time to CI awareness by maintaining cochlearimplantonline.com, moderating deafvillage.com, creating t-shirts, illustrating books, raising funds for various organizations, speaking to the public (not only in the US) and sharing her story. Along with everything else, Rachel continues to be an active member of the Cochlear Awareness Network.

The award is well deserved! As the winner, Rachel receives the opportunity to visit the Cochlear Americas headquarters in Denver, Colorado to share her experiences and meet with Cochlear executives and employees.

To read more about Rachel, visit her here.

Congratulations to all others that were nominated as well. Your devotion to the CI world is appreciated by many! More information regarding the Hearing Hero award can be found here, along with profiles of the other nominees.

...with love from the members of the Pediatric Cochlear Implant Circle

Size comparison of Nucleus 5 and Nucleus Freedom BTEs

2010-03-11T16:26:00.003+01:00

If you're an avid CI family blog reader, you may have seen this already. Landon's (a.k.a. Buzz's) mom, Jen, posted some nice pictures on her blog comparing the new Nucleus 5 with the older Nucleus Freedom sound processor. There are photos both on and off Landon's ear (he's about 3 1/2 years old, BTW). Check it out: Landon's New Ears are Here

Also, in case you missed it a few months ago, here is a (captioned!!) video comparison of the Nucleus 5 and Freedom sound processors reviewed by an audiologist who also happens to be Nucleus user.

Congratulations Val and Rachel AND New Youtube CI Channel

2010-02-22T21:13:00.010+01:00

Congratulations to two CI Circle family members, Val Blakely and Rachel Chaikof who were recently nominated for a "Hearing Hero" award given to "someone who has dedicated their time to proactively educate others on how Advanced Hearing Solutions can dramatically improve the communication ability and quality of life for those impacted by a significant hearing loss."

Val Blakely: Val has two children with bilateral implants, and she always has an upbeat, positive attitude. She's a loving, patient mom, and her knowledge of CIs and hearing loss is amazing. She is constantly coming up with ideas to reach more parents of children with hearing loss to offer them options and hope.

Val volunteers a great deal of her time to on-line efforts. She writes a popular blog about her two kids with cochlear implants called deafkidscanhear.blogspot.com, she moderates the DeafVillage.com news aggregator site, and she comments frequently at the CI Circle Yahoo group for parents of kids with cochlear implants. Together with me and two other Cochlear parents she helps edit the CI Circle News blog (http://www.cicircle.blogspot.com/). Val also writes the Alabama blog for children with hearing loss with another mom (bamaears.blogspot.com) and often mentions cochlear implants on Facebook.

This is probably just some of what Val does -- she probably does a lot more I don't even know about! And she does it all without being pushy about implants, teaching or communication methodology or implant brand.

*AND*

Rachel Chaikof: I would like to nominate Rachel because she is an awesome role model for my son, Max who also uses a CI. Rachel's devotion to helping others learn about the option of listening and speaking and benefits of the Cochlear Implant is amazing. I have benefited from her website: http://cochlearimplantonline.com/site/immensely. I have learned so much that helps me directly impact my son's life. I also felt pride when she set out with her pals to create http://www.deafvillage.com/. I am in awe and amazement of her abilities, her talents, and her devotion to educating our world, and empowering those like my Max!

Recently, Rachel has undertaken a new endeavor. She has created the first official youtube cochlear implant channel, where she has just begun assembling an impressive collection of many of our Pediatric Cochlear Implant Circle kids- click here to meet our kids!

*Hats off to you both!*

New Connexin 26 Research: Does Hearing Worsen?

2010-02-01T01:45:00.005+01:00

Researchers at Children's Hospital Boston and Harvard Medical School have just published a new study on children whose hearing loss is caused by connexin 26 mutations. They wanted to know if hearing loss caused by connexin 26 remains unchanged or worsens. They monitored the hearing of about one hundred children for about 10 years to see what happened. Read on to learn what they discovered.

Background: Connexin 26 is a protein made in the cochlea. (It is coded for in our DNA by a gene called GJB2.) The exact purpose of the protein is not known for sure, but it is thought to help regulate the balance of potassium in the supporting cells. If the potassium balance is wrong, the supporting cells die, and there is evidence to suggest that if they die, the sensory hair cells -- those that pick up sound vibrations and stimulate the auditory nerves -- die also.

A cell-level view of the sensory part of the cochlea (from www.nature.com) (You don't need to try and understand this picture if you don't want to -- it's just for decoration.)

Connexin 26-caused hearing loss is typically inherited in a recessive fashion. In this case, each parent, usually unknowingly, has one healthy and one mutated copy of the gene. If a child inherits a mutation-carrying copy from both parents, the child will have hearing loss. (More details about how hearing loss is inherited can be found in the booklet you can download here.)

Connexin 26-caused hearing loss is common and could account for 10% or more of all cases congenital, or "born with", hearing losses. In other words, if your child was born with hearing loss (and you haven't yet had any testing to find out the cause) the chances are 1 in 10 that it is caused by connexin 26. If your child does not have any kind of syndrome that is responsible for their hearing loss, such as Waardenburg, the odds that it was caused by connexin 26 are even higher, like 1 in 5:

Causes of hearing loss from Boystown's www.babyhearing.org website.

The Research Study The new research described here was carried out by a group of geneticists, otolaryngologists, and audiologists. A total of 126 children were included in the study. Of these children, 33% already had profound hearing loss when their parents agreed to take part in the research. Their hearing loss could not get any worse, so its progression couldn't be studied. The rest of the children had hearing losses somewhere in the mild to severe range when they first enrolled in the study.

Does the hearing loss progress? This was the first question the researchers asked. They found that in just over half of the cases (56%) the answer was yes, the hearing loss did get worse. The rest of the children seemed to have stable hearing levels over time.

Does the type of mutation determine whether it will progress? Many different hearing loss-causing mutations have been discovered in the gene for connexin 26 since it was first discovered in 1997. Earlier research showed that these different mutations can have different effects. Those that cause the protein to not be made at all are the most damaging and usually cause more severe hearing loss. Those that cause it to still be made but in an altered form usually cause less severe hearing loss. What was not known is whether certain kinds of mutations are more likely to cause hearing loss to worsen. This new study revealed that there is no correlation between the particular mutations a person has and whether or not the hearing loss will worsen. In other words, there is no crystal ball. However, for the children whose hearing loss levels did worsen, changes were detected on average 13 months after their hearing loss was first discovered. (A graph in the article shows a pattern of fairly rapid progression over the first year or two followed by a gradual leveling off.)

Why might some individuals' hearing losses progress while those of others with the same mutations stay the same? The researchers wrote that they don't know, but that there could be additional, as yet unidentified, modifier genes or environmental factors involved.

What does this mean for parents? While it would have been nice for parents to have a more definitive prediction of whether or not their child's hearing loss would progress based on which connexin 26 mutations they have, at least knowing that the odds of it being stable are 50:50 is something. Also knowing that progression, if it is going to happen, would likely be seen in the first year or two after the initial diagnosis gives parents at least some time-frame over which fret. Inevitably, our (genetically programmed??) individual human natures will determine just how much sleep we lose over this knowledge.

The full article is published in the Archives of Otolaryngology - Head & Neck Surgery (free full text available):

Audiologic Phenotype and Progression in GJB2 (Connexin 26) Hearing Loss, MA Kenna, MD, MPH; HA Feldman, PhD; MW Neault, PhD; A Frangulov, BS; B-L Wu, MMed, PhD; B Fligor, ScD; HL Rehm, PhD, Arch Otolaryngol Head Neck Surg. 2010;136(1):81-87.

Lydia is the parent of a child with bilateral cochlear implants and hearing loss caused by connexin 26. She is also an audiology graduate student.

Deaf Children and Reading

2010-01-26T15:20:00.001+01:00

Reading and Deafness: One Mom’s Journey

When I first found out that Neal was deaf, three things were in the back of my mind. 1) I’m going to have to learn sign language; 2) Neal will never attend a regular school; and 3) He’s not going to read above a 4th grade level. (My husband had just finished a mainstreaming course as part of his teaching credential and been given the “fact” that deaf people don’t usually read above a 4th grade level). Of those three, the last one weighed most heavily on me.

I consider reading to be one of the most important skills in life. It was a plan of mine to instill a love of books and reading in my children from infancy. I gave them books as toys so that even before they could read them, they would consider them a fun thing to have around. I chose books that were nearly indestructible and didn’t take them away if my children used them as chew toys. I was even quoted in a parenting magazine on the subject when my daughter was a baby. It was nothing less than devastating to think that my son might be robbed of the opportunity to enjoy reading.

I needed to remedy the problem. I didn’t run to the computer to research the subject. I didn’t even take time to question if the statement might not be fact. Instead I sat down and thought about it. I asked myself, “Why would a deaf person have trouble learning to read? They can SEE the words after all.” I imagined myself reading and then it struck me. When I read, I hear the words going through my head. I sound out any words I don’t know. What if I didn’t know what sound was? What if I couldn’t “hear” myself think? Others could give you statistics or lead you to articles that endeavor to explain why the average reading level in deaf people was thought to be 4th grade, but this was enough for me. It was probably one of the reasons that I was so open to learning about the use of technology to provide access to sound for my son, and why he ended up with bilateral cochlear implants too. Of course that wasn’t the only reason, and of course it wasn’t all just up to me, but it is a good example of how important reading was to me.

So it became a quest for me to make sure that Neal broke that stereotype. In the year between his diagnosis of profound deafness to the time that he finally had access to sound, I used the sign language that we had to read books to him. He showed interest and I made it part of our day every day. Once he did have access to sound, I started using books to help teach him new language. At the urging of the teachers and therapists at his preschool, we made our own “experience” books with pictures and descriptions of everyday activities. I read books to him paying only minimal head to what the words in the books actually said, instead using the words that he was working on at that time that made sense with the pictures. I used the same books with new words added or substituted as time went on and Neal had more language. I read to him for at least an hour per day. We would read up to 20 picture books before bed sometimes. When he was about five years old, I started reading chapter books to him (the Junie B. Jones series by Barbara Park in particular). I could still modify the language as need be (giving Junie B. language much better than she had in print so that he wouldn’t pick up her habits). I found that he could do it. He could listen even without pictures. Soon we moved on to other chapter book series, and before Kindergarten was over, we had read the entire Chronicles of Narnia.

During this time, I also did what most parents do. I started teaching him the alphabet and the sounds that the letters make. I hung an alphabet chart by his bed and we went through it every night naming the letters and their sounds. I went on to teaching Neal sight words, the words kids need to “know” without sounding them out. He was almost through the first 100 of those by the time he started Kindergarten. I really feel that knowing a certain number of sight words was a big help to him. It gave him some self confidence that he would someday be able to read a book to himself.

In Kindergarten he did start reading short picture books to himself. I had him read out loud to me and try to impart to him the importance of tone while reading, so that he ended up being very good what I would call “non-robotic” reading. His reading flowed well. One book I used to help with this was called Hug by Jez Alborough. It has nothing but the word “hug” in its pages, but I taught him how you could make it have slightly different meanings depending on how you intoned it. I also asked him questions constantly about what he was reading and had him make predictions about what might come next, etc.

By first grade, he was already above most kids in his class in reading skills. He read his first chapter book to himself and passed a reading comprehension quiz on it that year as well. I think that was when I first knew he was going to be ok. He would read at whatever level his brain was made for and being deaf was not going to hinder the process.

Neal is now in 4th grade. He recently took a test that placed him at a 12th grade reading level. He was told by the test administrator that he had the highest score she had seen in a 4th grade student. I’ve had several school personnel comment about that accomplishment to me. I doubt that any of them realize what an achievement it really is though. Sure, any parent would be proud of it, but for me it represented the accomplishment of a personal goal for my child. He would not be leaving 12th grade with a 4th grade reading level. Instead he would be doing the exact opposite.

I still read out loud to Neal to this day. I think reading out loud to your child is at least as important, if not more so, than having them read to themselves. I still ask him questions as we go along, but these days it is just as likely to be Neal who asks me a question or reveals his suspicions about where the story is going (and he’s usually right). I have always read books that are slightly above his language level so as to have new language to offer him while doing it. He also reads to himself and has described himself on more than one occasion as a “reading maniac.” He even has his own book review blog these days, which he is quite proud about.

In the end, none of the three things that I first worried about with Neal being deaf have turned out to be true. He doesn’t need me to be fluent in sign language to communicate with him. We still know a few signs and the alphabet, and maybe someday he’ll decide to learn more. But then again maybe Spanish or French will have more appeal to him. He has attended a regular, mainstream classroom since Kindergarten. No different than his hearing sister. And he most certainly will not be reading at a 4th grade level as an adult.

Having a child with a disability sure does open your eyes to what other stereotypes and misperceptions might be out there in the world about other groups, and what a gift that is!

Written by Rhonda Savage (http://www.mamasavage.blogspot.com/)
Neal's blog (http://savagereads.blogspot.com/)

Cochlear Implants in the Middle of Nowhere

2010-01-19T00:05:00.000+01:00

Hello from eastern Montana a.k.a. the middle of nowhere. I am the mother to a four year old, bilateral cochlear implant user and despite having absolutely zero cochlear implant resources in our area, my son continues to excel.

Many of you may be living our same experience, some, not so extreme. We travel 10 hours one way, to Denver, for mapping and Auditory Verbal Therapy (AVT) sessions. There is a CI Center in Western Montana, but nowhere in Montana, North Dakota, or Wyoming can you find experienced pediatric cochlear implant professionals. We rely heavily on online resources, self-education, and we take in as much as possible when we visit our AVT every six months. Our family does not strictly follow the AVT principles, but we continue to receive much support from the AVT at our clinic because of her experience in cochlear implant rehabilitation.

Some families that lack proper resources in their area choose to relocate. We chose not to leave our comfort zone and decided we’d do our best to educate ourselves, our local Speech Language Pathologist (SLP), our local school district, and family and friends, all of whom will contribute to our child’s future education.

Besides the lack of experienced cochlear implant professionals, another huge downfall of living in the middle of nowhere is encountering the unforeseen problems that may arise with the equipment. If maps need tweaking, we can’t just schedule an appointment and go. There was a time when we had to mail a processor to be re-mapped a few weeks after returning home. Thankfully, while at our appointment, we discussed potential problems and the proper way to resolve them. Also, we always need to be financially prepared for an emergency trip and have a travel plan in place. Internal failure or head injury could happen at any time.

After learning of our child’s deafness, we first started learning American Sign Language (ASL). When you have no ASL or Signing Exact English (SEE) educators and you want to teach your child sign language, you, the parent, will be responsible for teaching yourself through books, online sources, videos, or other deaf adults. Our family turned to online resources, such as Lifeprint.com, and we fell in love with the Signing Time videos. In our case, we also had an outreach consultant from Montana School for the Deaf and Blind that taught adult ASL courses.

When we found out that a cochlear implant was a reality for our little guy, we immediately started seeking out oral deaf resources. Our first saving grace was the many blogs written by other parents of CI kiddos. From there, we found an abundance of other online resources, such as the CICircle and Listen-Up Yahoo groups. The amount of information provided by other parents is, at first, overwhelming, but an invaluable tool and very inspiring.

On the activation day, we had our first experience with the Auditory Verbal Method. Many families begin these services, or similar services, shortly after finding out about their child’s hearing loss. By doing so, the family is prepared and knowledgeable by the time the child has access to sound via hearing aids or cochlear implants. Our AV therapist modeled different activities we could do at home and sent us home with some “homework” to complete before our next session.

Other resources suggested early on that we find helpful are the John Tracy Clinic Distant Education Courses and The Listening Room , provided by Advanced Bionics and Dave Sindrey, a certified AVT.

An integral part of our journey was our visit to the John Tracy Clinic International Summer Session. There, children participate in a spoken language preschool designed to identify their strengths and needs and parents participate in an education program to learn about hearing loss, auditory-verbal techniques, emotional support for families, and educational services for their children. We left there feeling armed and equipped to face the world at home where no CI resources existed.

Every week, we attend therapy with our local SLP (Speech-Language Pathologist). There is always a parent, grandparent, or other family member in attendance with the child. We are not there to only learn and progress, but to teach her what we have learned throughout our journey. We know our child better than anyone and we’ve been there every step of the way, paying close attention to all the little details. Our SLP communicates regularly with our AVT and other oral deaf educators, welcomes and uses resources provided by our family, and also uses many activities printed from The Listening Room. Communication among the members of your child’s team is vital, no matter the distance.

As preschool and IEP (Individualized Education Plan) time approached, we found communication even more important than before. We had many consultations with our AVT over the phone, we put our district in touch with our AVT, critiqued the local preschool setting, and spent many hours online researching IEP laws. It is very important to have a good relationship with your child’s educators. Share all of your knowledge and tools regarding cochlear implants and most importantly, communicate regularly. For many teachers in rural places, it will be the first time teaching a child with a cochlear implant.

Our AVT, highly educated in oral deaf education, offered to do an in-service via Skype for our district since no one here has experience with cochlear implants or oral deaf education. On the CiCircle forum, there has been mention of other families participating in remote AVT sessions instead of driving the distance and participating in person. There is not an AVT in every city or even in every state. Click here to find an AVT and ask if they’d be willing to provide remote AVT services via Skype or another web-based conferencing application.

We have found a wealth of knowledge online and we continue to share it daily with our son’s educators and therapists. For more resources relating to hearing loss, please click here.

Despite where you live or the number of available resources, you, the parent or provider, will always be your child’s most important teacher.

Halloween- CI Style!

2009-10-30T23:22:00.002+01:00

Lera's Mom strikes again!

...Hi. For Lera's Halloween party at school, we turned her CI headpieces into spiders. Very silly, I know. : ) I took 4 black pipecleaners and cut them in half. I put wig tape on each of her headpieces and attached 4 pipecleaners in the middle to make 8 legs (on each one). I then put more wig tape on top of that and added a black felt circle to cover each headpiece. I think she actually looks cute with giant spiders in her hair! Next year maybe we'll do orange felt pumpkins on her CIs. : )

Enjoy,

Julie

Update: Extreme Makeover and Cochlear Implants

2009-10-15T09:33:00.005+02:00

Click here to view entire article!

"The episode of Extreme Makeover that features Marshall and his family airs at 7 p.m. Sunday..." check your local listings...

"Marshall, a Dallas police lieutenant, spent almost nine months in the hospital after he was shot during an October 2007 drug raid in Oak Cliff. A bullet pierced his neck and damaged his spinal cord. He had a severe stroke and contracted meningitis. He was 44 at the time.

He's still in a wheelchair, and needed cochlear implants to preserve his hearing..."

quoted from The Dallas Morning News (link provided above)

Cochlear Implant Story on ABC's Extreme Makeover Home Edition...Check it Out!

2009-10-13T10:15:00.003+02:00

Message sent to Pediatric Cochlear Implant Circle:

Hi Everyone,

This coming Sunday (10-18 8/7c) ABC's Extreme Makeover Home Edition will air the story of a recent simultaneous Nucleus Freedom (two cochlear implants) recipient. The story includes how this recipient, lost and then regained his hearing with two cochlear implants. This is quite a story and one you will not want to miss. Please share this information with your family, friends, neighbors, and social network sites (facebook, forums, etc).

In addition, this show is a must see for those that have significant hearing loss. Join the estimated 12 million+ people who watch this show weekly to see this amazing story that will air this Sunday evening on your local ABC station.

Marshall Family The Texas home of a former SWAT team leader and his wife, a homicide detective, is rebuilt to solve rampant structural and accessibility issues.

Trick out your CI processor

2009-10-06T13:03:00.009+02:00

Look what we found!

A parent on the CI Circle listserve posted about a company called SkinIt, which makes custom skins for phones, laptops, cameras, just about any electronic device including -- you guessed it -- CI processors! There are thousands of designs available including (but not limited to) Disney, video games, religious, pretty girly stuff, scary skull stuff, and (mostly USA) sports team logos (though this Red Sox fan wants to know why SkinIt thinks that I might like the New York Yankees logo in their "recommended for you" section" NOT!!) You can even create your own design.

The SkinIt website is a little confusing at first, but what you need to do is both 1) choose a device and 2) choose a design. CI processors are in the 'Medical Device' category.

Now for the bad news (for some of you): SkinIt only makes skins for Advanced Bionics brand CI processors. However, perhaps with enough emails from us, they'll realize they can make even more money if they make skins for Cochlear and MedEl as well. (Skins for AB will not fit the other brands -- somebody asked.) Another small bit of bad news: not all designs are compatible with every device. For example, NFL logos do not work on the AB processor. However, you can get the Yankees logo (and hopefully other baseball teams) for US $14.95. Same price for something like a UK flag. An animal or botanical print is $12.45.

(Click on image to go to SkinIt website)

Decorating CI Processors

2009-09-02T16:06:00.017+02:00

Over the years, some parents have gotten quite crafty with decorating their child's cochlear implant processor(s). From ribbons, barrettes, and flowers for the girls, to stickers and tube riders for the little boys, here are many of the options and instructions from Lera's mom, Julie. Her decorations and more photos can be found at her site: click to visit Julie's site

COCHLEAR IMPLANT DECORATIONS

HEADPIECE or COIL DECORATIONS (attach with double sided tape like wig tape):

Silk flowers (can use with crystal brads)

Bows
Appliques (flowers, hearts, seasonal decorations)
Felt flowers (or other felt shapes)
Stickers/adhesive crystals

Color caps for the AB processors

*Decorations should be lightweight
*Note: some headpiece decorations are not suitable for the Advanced Bionics' body worn CI because of the microphone's location on the headpiece

CORD DECORATIONS:

Embroidery floss cord wrap (like hair wrapping) (can add beads)-

Youtube wrapping video w/captions

Easy guide for wrapping

More instructions for wrapping

Wired ribbons wrapped to cover the cord can also be used

BTE DECORATIONS:

Stickers- Craft stickers, adhesive rhinestones/crystals, Indian Bindi, cell phone bling, Nail decorations, etc. Indian Bindi

Especially for boys: stickers that represent the boys' interests and pinewood derby decals

Cochlear America's colored BTEs and color panels & stickers

Advanced Bionics' headpiece covers

COLORFUL retainer EARMOLDS (to keep the processors in place):

Earmolds (or ask your audiologist about fun color combinations)

Other PRODUCTS that can be used to decorate cochlear implants:

Tube riders

Ear Gear

Ear Wear

My Magic Fairy barrettes and accessories

Oto Clips

Super Seals

Some children love to decorate their processors and love the attention they get from their peers when they walk in with flame stickers or a blinged out BTE. You should be warned that decorating your child's processor can cause CI envy in the hearing children at school.

Julie Walkup (mom to Lera)

Seeing the impact

2009-08-08T11:37:00.009+02:00

CI circle started back in the 90's by myself and Karen Biernat. One day in my free time I will actually write how it all came about, it is really quite an interesting story.

In a nutshell we had parents contacting us asking us the same kinds of questions about implants for children. At that time the only groups they had found were not supportive of implants for children and some of these parents had been on the receiving end of some pretty unpleasant stuff.

When CI Circle started, there were 8 original members including Karen and myself, today there are 1963 members! We never dreamed that the group that we started would ever become this big. I guess we didn't really even think that far ahead, we just started the group to meet a need and well, things just happened.

Earlier this year I was privileged to attend the Cochlear Americas Celebration in California, thanks to the support of a very dear friend. So the members of CI Circle going to the conference decided we should meet up for a lunch while we were there. A chance to put a face to those names we see online on an almost daily basis.

So the Saturday came and we headed over to meet for lunch. There were quite a few of us and even a mom who wasn't on the listserv - yet!! She was going to sign herself on when she went back home : - )

While we were waiting for the last of the group to arrive, I listened to many of the parents talk about how CI Circle became their favourite resource, the first place they went to find information - from other parents who had been there before. It was a really neat thought to think that our little group was making a difference for these parents.

So we sat down at the table and we were introducing ourselves around the table. It was quite noisy where we were and so not everything was heard right off the top. On my right hand side sat a mom her young son and we were discussing the other issues he has had to face in addition to his hearing loss. This mum was just so awesome in her determination to get things done for her son, in fact she said her life was pretty much summed up by "life gave me lemons so I make lemonade" - she was totally inspiring! Anyways she was chatting to a few of the other mums and turned to me and said "And who are you again?" I said "I'm Naomi, as in co-founder". She turned to me in her seat, said "thank you" wrapped her arms around me and gave me the biggest, most intense hug I think I have ever had in my life.

Well of course I just lost it! Tears fell. I cried, she cried and I looked up and my dear friend sitting opposite me who had seen the whole thing was also getting teary. She said she wished she had a camera as it was one of the most incredible moments she had ever seen. For the rest of the weekend every time I saw this mom, she looked at me, I looked at her and we would both start to get tears in our eyes.

It is kind of funny, you know you do something because it seems like a good idea at the time and you know there is probably a need for something like that, but you truly don't have any idea of just what an impact that has made for some families. I think it is fair to say that it was truly humbling and one of the most amazing moments of my life. There have been other parents who have also thanked me too over the years of CI Circle but nothing as intense as when this mom hugged me. (Still think of you often, Blonde Zena!)

It is truly an amazing feeling to have been part of something that has developed into this incredible resource and support network for the parents going on this journey.

written by Naomi Higgs

Becoming an Advocate

2009-06-28T14:02:00.019+02:00

Quite possibly one of the hardest things for me to swallow through our first year of becoming parents to deaf children was the average civilian’s lack of knowledge. Though I’d worn those very same shoes for 26 years prior to having my first child, I quickly forgot my own condition, which was weighted with the same ignorance. I immediately began my habilitation as soon as I left the hospital to care for my first child with multiple needs. At first, I admittedly, was quite offended and scared that the entire community wasn’t already prepared for my child. It only took me over-hearing people whisper a time or two, or seeing parents redirecting their children who may have taken a second glance at my child’s hearing device and scared their child may ask a question that would offend us, or worse, that they couldn’t answer, for me to decide, I had work to do. My children were just as much fun, and had just as much ‘kid’ in them as everyone else, and if I wanted my environment prepared enough to enjoy my kids, and not just see them as existing, I needed to move from angry to advocacy. I never wanted another child (or adult for that matter) to walk away from a playground, or a grocery store, or a restaurant, wanting to know what they were wearing on their heads, and not give them that answer.

I began by answering their facial expressions. If I saw someone taking a second look or seem puzzled as they sort through the files in their brain to see if anything they have stored will do as for a label for the equipment seen before them, I'd just speak up and tell them what they were looking at. After I gained confidence with speaking to people about the kids' devices, and saw the interest that others seemed to share, I took a step back and waited for those questions to come in verbal form rather than answering them before they were really there. I wanted to give people a chance to also become comfortable with us, even in a check out line, so my children and I make usual conversation (or sometimes unusual depending on which child starts it) first, without overloading them with information they didn't ask for. If they became comfortable with us as “people” first, then they are more likely to ask their questions should they have any. Even early on, I’ve been pretty adamant about the kids answering questions for themselves. I was more than happy to help clarify any misunderstood speech but I wanted my kids to try and answer questions directed toward them. After all, all that time working on speech and language and what better way to practice but with real time conversations. Now they’ve both turned into their own little advocates by talking to their classmates about what it’s like hearing with cochlear implants, confidently asking for their own repeats if needed, and informing those who begin conversations with them at the beach or pool when they aren’t wearing the processors, that they are deaf and can’t hear without their cochlear implants. My next step would be to have them write their own letters to our state legislators about the state’s poor Medicaid reimbursement for cochlear implant surgery. I’ve already written mine and had all my family and friends help but until I read this story from Lydia, it never crossed my mind to let them write their own. Here’s her story:

Jeremy's Teacher of the Deaf had all the kids she works with in our town (about 5 of them) write letters to our US Representative in Congress in support of captioning for electronic media legislation. So isn't that cool that she's teaching them how to advocate beyond just their classroom? Here's the letter she sent parents (The group, Hearing Loss Buddies meets twice a year and includes the 5 kids who go to 3 different elementary schools. There is one 2nd grader, two 4th graders and two 5th graders in the group):

Hi Parents, During this year, I have been researching information regarding federal legislation to mandate closed captions for web-based media. I learned that in the last Congressional session (110th), Representative Markey (Massachusetts) introduced a bill toward mandating CC for web-based media. No action was taken and the bill effectively died.

Working with the students during Hearing Loss Buddies, they wrote letters to Representative Tsongas explaining why closed-captions were needed. I hope they showed you their letters. As well, I wrote letters to Representatives Tsongas and Markey. I am letting you know about this as you may want to do the same and write a letter. There is no current legislation introduced and these letters urge them to reintroduce the legislation.

Bill Information:
The Subcommittee on Communications, Technology and the Internet is the Congressional committee responsible for this issue. “Rick B” is the Subcommittee chair.The bill introduced during the last session was H.R. 6320, "Twenty-first Century Communications and Video Accessibility Act of 2008." The legislation incorporates the inclusion of closed-captioning of video programming carried over the Internet, as well as expanding the scope of devices that must display closed captions....

Isn’t that a fabulous way to broaden the children's own advocacy skills? That story leads me to a great little poem which Naomi contributed as one of her favorites and I found quite fitting.

IT MATTERS by Anonymous

As I walked along the seashore,
This young boy greeted me.
He was tossing stranded starfish
Back to the deep blue sea.
I said, "Tell me why you bother.
Why waste your time this way?
There's a million stranded starfish.
Does it matter, anyway?"

And he said, "It matters to this one.
It deserves a chance to grow.
It matters to this one.
I can't save them all, I know.
But it matters to this one
I'll return it to the sea.
It matters to this one
And it matters to me."

I walked into the classroom.
The teacher greeted me.
She was helping Johnny study.
He was struggling I could see.
I said, "Tell me why you bother.
Why waste your time this way?
Johnny's only one of millions,
Does it matter, anyway?"

And she said, "It matters to this one.
He deserves a chance to grow.
It matters to this one.
I can't save them all, I know.
But it matters to this one.
I'll help him be what he can be.
It matters to this one
And it matters to me."

I walked through the capitol.
Some parents greeted me.
They were helping legislators
Remember children in all they do and see.
I said, "Tell me why you bother.
Why waste your time this way?
Your issue is one in millions.
Does it matter anyway?"

And they said, "It matters with this one.
Children deserve a chance to grow.
It matters with this one.
There are other causes, we know.
But it matters with this one.
We must help children be all they can be.
Because it matters to everyone
What our future turns out to be.

For some of us, it's not easy becoming an advocate. It takes hearing your own voice before you gain enough confidence to let others hear it as well. We all become advocates in our own ways, whether you're walking into the classroom and talking to the teacher about your child, or walking in and meeting with your state legislatures, you will improve not only your advocacy skills, but your community as well.

Written by Val, mom to Gage (8) and Brook (5), both are bilateral cochlear implant recipients

Hot Off the Lab Bench: Research News on Hearing Loss, Usher Syndrome

2009-06-22T14:09:00.056+02:00

This is still not the craftsy blog we've been advertising. Instead we bombard you with science(!!), which from this reporter's perspective is the most exciting thing on earth. I suppose most readers will think otherwise, so I'll try to make it as exciting or, at least, as informative as I can.

I've spent the last two days at conferences at Harvard Medical School in Boston. On Saturday, June 20, the Decibels Foundation, together with Children's Hospital Boston and Harvard Med, sponsored two "Frontiers" conferences for parents and the general public. The morning session was Frontiers in Usher Syndrome and the afternoon was Frontiers in Hearing Loss. These piggy-backed on a 3-day scientific conference, Molecular Biology of Hearing and Deafness. I'll report on the Sunday talks from that one as well.

Probably the best part of going to the meetings was getting to finally meet, in person, some long-time cicircle friends that I've known only via email for over eight years, and to see some local Boston friends again. But the science was pretty exciting too.

This report is organized as follows: Usher Syndrome, Hearing Loss in General, Miscellaneous, in case you feel like skipping around.

Frontiers in Usher Syndrome
Usher Syndrome causes both hearing loss and vision loss due to retinitis pigmentosa. There have been a great many new discoveries about Usher, including some promising treatments for retinitis pigmentosa just within the last few years.

The morning's first speaker was Prof. William Kimberling from the University of Iowa, who introduced Usher Syndrome. Some of the key points he made included:

There are 3 clinical types of Usher: Type I, Type II, Type III plus a fourth category called "atypical" that doesn't fit either of the first 3. in Type I, there is profound hearing loss from birth and balance problems (children don't walk until after 18 months -- this feature combined with profound hearing loss is something parents should not ignore). The onset of retinitis pigmentosa (RP) in Type I Usher is fairly early. In Type II, hearing loss is moderate to severe and RP doesn't start until later in the teens. In Type III there is a progressive hearing loss, and this type resembles Type II in childhood and Type I in older adults.
Dr. Kimblerling said that at age 50, at least half of adults with Usher can still read the newspaper. This was good news! Dr. Kimberling showed some simulation slides of what an individual with Usher sees as the disease progresses. Often the earliest symptom is night blindness. In the dark, people with RP see only the bright lights, not shadowy details. Later, vision loss begins to affect daytime vision. It may begin with blocked out patches in the peripheral visual field, and eventually progresses to tunnel vision where a person sees just the center of the visual field. (The picture shown is one from an Australian web site, but is similar to ones shown by Dr. Kimberling.)
Usher occurs much more frequently than was thought previously. It may affect 8% to 10% of all deaf children, and is the next most common genetic cause of deafness after Connexin-26 mutation.
So far, 12 genes have been discovered that, if abnormal, can cause Usher.
Early identification of Usher is important because early treatment may delay vision loss. Vitamin A supplements, especially in combination with fish oil or salmon may be helpful but are controversial because Vitamin A is toxic in high doses. Dr. Kimberling cautioned parents not to give supplements to children without a doctor's guidance.
There are several gene therapy programs now underway for several types of Usher. (More on that with the next talk.)
Generally speaking, individuals with Usher are not candidates for retinal implants at this time but may be in the future when retinal implants improve (both Dr. Kimberling and the next speaker seemed to agree on this in a question-and-answer session.)

The next speaker of the morning was Professor Doctor Uwe Wolfrum from the Johannes Gutenberg University of Mainz, Germany (both he and Dr. Kimberling were in Boston for the scientific conference.) Poor Prof. Wolfrum! His microphone kept moving, so it was hard for the audience to hear his talk and the talk itself was perhaps a bit technical. However, Prof. Wolfrum described some extremely exciting progress on Usher. His laboratory, in collaboration with several research consortia and funded by foundations and families affected by Usher, are starting gene therapy clinical trials! Specifically, they have trials under way or about to begin for retinitis pigmentosa caused by the genes USH1B, USH1C, USH2A, and USH3A. In addition, they are testing a drug called PTC124 to treat USH1C. This drug is a toxic aminoglycoside, but they are hoping that a less toxic version of it can be developed and used. (The drug is injected into the eye, not taken in pill form or intravenously. So far, they are testing it in mice.)

Prof. Wolfrum also answered something the scientist in me was wondering about: how can so many different genes cause Usher? Most of the 12 genes known to cause Usher are not similar to each other and yet they cause a similar disease. Prof. Wolfrum's theory is that the proteins made using the instructions coded for by the Usher genes all work together in big cellular machines (the USH protein "interactome"), both in the sensory cells of the retina as well as in the sensory hair cells in the cochlea. If any part of the machine is broken (i.e. one gene/protein), the whole thing grinds to a halt.

The last part of the morning was a panel discussion. On the panel were the parent of a 4-year-old with Usher I, a 45-year-old with Usher II diagnosed 14 years ago, a parent of a college student recently diagnosed with Usher I and the college student herself. The advice and life experience shared by these individuals was one of the highlights of the morning session. Some of the comments made included:

Learning about Usher was a relief for the mom of the young child, because not knowing the cause of and the possible reasons behind his balance and coordination problems was frightening.
Finding out later for the college student (she was diagnosed with retinal disease just weeks before her freshman year at college) was a big blow because she wanted to pursue visual arts, but a blessing as well because if she'd known earlier, she may have been steered away from her passion. She plans to continue with art.
Finding out about Usher made the family of the college student and the college student herself feel extremely lucky that, despite strong pressure from professionals to sign when she was young, the family had chosen oral communication.
Finding out about Usher made the family with the young child chose a more auditory path than they had settled on initially and to seek a second implant to allow the child to develop good sound localization ability if and when vision loss progresses.
The adult, who had hearing loss her whole life, discovered something was wrong with her vision when she noticed herself becoming unusually aware of obstacles she might trip over.
The 45-year-old said her Usher diagnosis was tough on her parents as well, who began to worry about her a great deal and also about her adult siblings, several of whom had hearing loss as well.
One of the parents emphasized that "knowledge is power" and there is much help to be found. She also reassured parents that her fear that her child would "wake up blind tomorrow" was not likely and that kids with Usher will lead very normal lives.

This was the end of the Usher talks on Saturday. There was a scientific poster presented at the conference by Dr. Margaret Kenna's group at Children's Hospital Boston/Harvard Med. The poster pointed out that it is not easy to detect retinal disease just by routine eye exams -- do not rely on them! Electroretinography (ERG) and dark adapted thresholds (DAT) can be abnormal long before parents notice a child's vision deteriorating. Dr. Kenna, who was also a speaker at the Frontiers conference (see below) and organizer and moderator, also emphasized the importance of early diagnosis of Usher both for helping parents choose communication modality as well as treatments to slow the progress of retinitis pigmentosa.

As a side-note, I observed something I had not seen before at a conference. During the morning session, there was both an ASL interpreter and a CART reporter -- nothing unusual about that. But in addition, there was a second ASL interpreter specifically for one individual. This interpreter sat directly in front of the person she was interpreting for, and had a bright light (a halogen desk lamp) illuminating her face and hands.

Frontiers in Hearing Loss
The whole weekend was not just about Usher. The afternoon session was about hearing loss in general. The first speaker in the afternoon was Prof. Heidi Rehm (pronounced like 'reem') of Harvard Medical School who is the Associate Director of the Harvard Medical School Center for Hereditary Deafness. Dr. Rehm gave a very clear introduction to what genes are and how they are inherited. Some important points made by Dr. Rehm include:

Today we know that genetic causes are responsible for between 1/2 and 2/3 of all cases of hearing loss. As time goes by and more genes are discovered, the fraction of genetic causes keeps growing. (In other words, an unknown cause becomes known as genetic; an anatomical cause is found to be caused by a gene, etc.)
About 50 genes for nonsyndromic deafness have been identified so far, but there are known to be at least 85 more places in our DNA where there are more deafness genes waiting to be discovered.
A blood test for genetic screening can be ordered anywhere, like through a pediatrician. It can be nice to have a geneticist or genetic counselor on hand to discuss the results.
It is not necessary to test the whole family initially, just the affected child. If a deafness mutation is found, it is much less expensive to test other family members for mutations in that one gene alone.
Connexin-26 is the single most common cause of hearing loss. It probably accounts for 50% of all cases of nonsyndromic recessive (genetic) hearing loss and 15-20% of causes for hearing loss over all.
A recent study of the progression of connexin-26 hearing loss by Dr. Kenna and Dr. Rehm on 126 patients that they followed for several years found: 38% started out with profound hearing loss (nowhere to progress to), 43% had stable hearing loss levels, and 19% had hearing loss that got progressively worse.
The connexin-26 protein makes channels between neighboring cells and is thought to control the potassium flow in the cochlea. High levels of potassium that build up when connexin-26 is absent or malfunctioning probably poison and kill hair cells.
Eating bananas does not help for connexin-26 hearing loss.
Gene tests are unfortunately not available for all deafness genes. The tests are easier and much less expensive for the short genes than long ones. Some of the deafness genes are long.
Today, Monday, June 22, Dr. Rehm's lab is going to be testing the new OtoChip Test for hearing loss and Usher Syndrome that they have developed. It will let them test for mutations in 19 deafness genes all at once. What an exciting day in their lab!

The next speaker was Dr. Margaret Kenna, who I've mentioned already. Dr. Kenna is an ENT at Children's Hospital Boston and a researcher at Harvard Med. Dr. Kenna (pronounced 'ken-AY') gave an overview of every kind of congenital hearing loss (congenital means you were born with it; it does not necessarily mean it is genetic, though it could be). Some of the points she made included:

We have come a long way just in the last 20 years. MRI and CT imaging has improved significantly, vaccines HIB and Prevnar have reduced meningitis dramatically, there are more interventions like cochlear implants and modern hearing aids, and many deafness genes have been discovered BUT, new causes of hearing loss have appeared as well, including interventions like ECMO used for premature infants in the NICU, Lyme disease and HIV, and more noise exposure due to MP3 players (noise-induced hearing losses are difficult to aid effectively since the loss is in the higher frequencies).
Dr. Kenna showed interesting images of Enlarged Vestibular Aqueducts; she also talked about various infections that can cause hearing loss, among them, cytomegalovirus (CMV) infection, which infects 1% of babies born. Of babies with CMV, 10-15% have symptoms, many with hearing loss at birth. Another 10-15% who were infected with CMV do not have symptoms at birth but will develop hearing loss later.
Parents should be aware that sometimes insurance does not pay for genetic tests, which is frustrating, but good to know or negotiate in advance.

The last speaker of the afternoon Frontiers session was Prof. Albert Edge from Harvard Med/Mass Eye and Ear Infirmary. Prof. Edge's talk was titled "Future Therapies for Inner Ear Degeneration." He talked about both his research and the research of other labs on gene therapy and stem cell therapy for hearing loss. The challenge lies in how to replace hair cells, which do not regenerate on their own if damaged (humans don't grow new cochlear hair cells after birth).

There are two different genes that people are using stimulate hair cell growth in the cochlea: introducing the gene Atoh1 or shutting off the gene, Rb. Here's a slightly old article about Atoh1 and Dr. Raphael's group who studies it at the University of Michigan.
There are two sources of stem cells: embryonic and adult (from within the individual). Advantages of using adult stem cells is they avoid immune rejection by the body and do not have political or religious conflicts associated with them.
Stem cell therapies involve injecting stem cells into the inner ear. Dr. Edge's group has shown that stem cells grown in a lab dish can change into both hair cells and neurons and that the neurons can make synapses -- connections with other nerve cells or sensory cells. This is sounding pretty promising!
Dr. Edge and colleagues are using robotics in the laboratory to sift through large numbers of small molecule drugs in order to find those that stimulate hair cell development.
They are working with engineers from MIT to make a miniature pump (like an insulin pump) to deliver drugs directly to the inner ear in a time-release fashion.

I asked Dr. Edge what he thought the prospects were of repairing a gene responsible for a genetic cause for hearing loss (like connexin-26), and regrowing hair cells as well, and he thought that was a more challenging problem than just regrowing hair cells. Another audience member asked Dr. Edge about preserving cord blood of a sibling -- could that be a good source for stem cells? He answered that one could go ahead and save it, but cautioned that it might never be used because of the uncertainty about how things will go in this field of hair cell regeneration. He was asked (the often-asked question): how soon will gene therapy and stem cell therapy will be available for hearing loss? He answered that they are "several years" away still. I asked him if someone who already has bilateral cochlear implants might be able to use these therapies, and he said that probably not with older implants, but now with the newer, more gentle electrode arrays and insertion methods (and possibly with the shorter arrays), it may be possible.

Miscellaneous
Here are just bits and pieces from the Sunday talks and posters that were up.

Dr. Richard Smith of the University of Iowa gave a talk in which he stated that if genetic testing is not available to a couple with a deaf child wanting to know the chances of having another deaf child, that the chances are 17%.
Dr. Smith also said that there is one form of auditory neuropathy in which people do not do well with cochlear implants (DDON Syndrome, caused by a gene or genes on the X chromosome.)
Dr. Smith also talked about a computer program his group developed called AudioGene. (I thought he said it is available for download but I can't find it anywhere.) It's specific for deafness inherited in a dominant fashion and allows people to input audiograms from themselves or family members. It predicts the gene responsible for their hearing loss.
There was a poster called "Deaf by Fever!" from a group in Paris describing a form of auditory neuropathy that causes causes profound deafness only when a person has a fever! When their fever goes away, their hearing comes back. Certain mutations in the otoferlin gene (OTOF; a gene known to cause auditory neuropathy) can do this! Is that whacky or what!? (Three siblings were studied. Their hearing loss is in the moderate to mild range normally, and they benefit from hearing aids.)
Scientists are interested in learning more about complex forms of hearing loss, age-related hearing loss and noise-induced hearing loss. It seems there are some individuals whose genetic makeup protects them from noise induced hearing loss more than other people (but don't count on it being you!)

OK, that probably does it for now. Time to start packing for the Northeast Cochlear Implant Convention in Strubridge, Massachusetts!

About the Author: Lydia Gregoret was at one time a chemistry and biochemistry professor who studied protein structure and stability using both computers and laboratory experiments at the University of California, Santa Cruz. She then became a full-time at-home parent for about 8 years. In September of 2009 she embarks on a new career: she begins classes at Northeastern University for an audiology degree (AuD.) Lydia dreams of becoming a cochlear implant audiologist one day.

CI Circle Weekly Round-up June 13-19

2009-06-19T21:21:00.004+02:00

Many apologies! The craftsy blog we promised last week is not ready yet, so we again bring you topics discussed on the CI Circle Yahoo Group for parents of children with cochlear implants.

Outgrowing a CI?
A security guard at national historic site commented to a family that he "had one of those" (meaning an implant) when he was a kid. He appeared to speak very clearly, did not have hearing aids, and did not appear to rely on speech reading at all. The parent wondered how that could have been possible. Another reader said the security guard may have thought the child's CI was an auditory feedback device to used for helping children with stuttering.

Keeping the CI on
A parent whose child resists wearing hearing aids asked if children with CIs also resisted. Several parents commented that their children took their hearing aids out all the time but were happy to keep their CIs on from the get-go. They speculated it was because the CIs gave them more benefit and better sound.

Sturbridge
Strategies for getting together/meeting other group members at the Sturbridge CI c onvention in Massachusetts were discussed. (Pool at Sturbridge Host Hotel in photo at right.)

New York, New York!
The group was asked to compare and contrast the NYU and NYEE cochlear implant centers. Both got positive reviews.

Arrggh -- Insurance!
The problem of CI manufacturers being "out-of-network" and thus causing people to pay high deductibles for parts and batteries was discussed. Ways to reclassify as "in-network" were suggested.

What is AVT?
Auditory-Verbal Therapy was defined. Though not AVT per se, a member posted some useful language development tips for parents working with young children.

Music Program
A parent asked if other children used the Music program in Cochlear's SmartSound 2 suite. Another responded that her children like the Whisper/ADRO variant for music. The discussion morphed to guitar tuning by teens with cochlear implants.

Mapping bilateral implants
A parent asked how frequently other people's children have had their sequential bilateral implant mapped.

New Cochlear brand device
Parents eagerly awaited word from the CI2009 conference in Seattle going on right now about Cochlear's new sound processor and internal device, but there was not much new information that trickled out.

Dizziness after surgery?
A parent asked if this was common and several people responded it happened to their children but went away within a week.

Other topics
Brand choice, Montessori schools, and smoke detectors were also discussed.

Do you like to read blogs about children with cochlear implants? Visit the Parent Blogs section at cicircle.org.

CI Circle Weekly Round-up June 6-12

2009-06-12T22:04:00.005+02:00

We've got a fun and craftsy blog post in the works that should be ready soon. Stay tuned for that. Meanwhile, here's a brief round-up of talk on the CI Circle Yahoo Group for parents. (And thanks to all who have voted in our survey above. The survey continues for a couple of weeks.)

Missing Gina Maser
Parents asked where to get a bilateral bodyworn harness for Advanced Bionics processors. Once upon a time, a mom named Gina Maser would make custom harnesses for people. She is no longer in the business and is sorely missed. Some parents say the harness made by Advanced Bionics works well for them. Others make their own, sometimes using an old geniune Gina harness as a template.

Speech Apraxia
Some deaf children who hear great with their CIs have difficulty pronoucing words due to speech apraxia (also true of some hearing children.) The signs of apraxia were discussed. Parents of children with apraxia of speech recommended finding professionals who specialize in this area.

Northeast Cochlear Implant Convention (a.k.a. Sturbridge)
The schedule of talks is out! Visit the convention home page and click on the tabs at the top of the web page. Keynote speaker is Josh Swiller, author of The Unheard - A memoir of deafness and Africa.

Buff wear!
Several parents reported getting the buffwear headwear that we mentioned last week, and are pleased with it.

To CI or not to CI
A new list member wondered whether or not to get an implant for her child and when, and whether to get one implant or two. Readers urged the new member to get an implant or two for their child if the child is audiologically a candidate, and to do it sooner rather than later. (We have an earlier blog post on the bilateral question.)

Hi-Res 120
A parent asked when this strategy would be FDA approved for children. Several members said their children have been using it for quite a while already and that it is available.

Choosing a brand
The common question of which CI brand to choose came up again. This generated some slightly heated discussion, though did not degenerate into a full scale brand war. CI Circle News readers may be interested in an old blog entry on this topic.

If you are the parent of a child with (cochlear implant(s) or if your child is about to get (a) cochlear implant(s), join the dicussion at http://groups.yahoo.com/group/cicircle There is an individual email option, digest option, and 'no email' option (read posts via yahoo website.) Additional information and resources viewable by group members and non-members alike can be found at http://www.cicircle.org

CI Circle Weekly Round-up May 30-June 5

2009-06-05T21:17:00.013+02:00

Can't promise we'll keep the round-ups going indefinitely, but here is the buzz this week among parents at the CI Circle Yahoo Group. And while you are here, check out our readership survey (above.)

Valedictorian!
List members with children of all ages were inspired by a Salem (Ohio) News story about one member's daughter, a high school senior.

CSF gusher
A parent asked about this potential surgical complication in children with atypical cochlear anatomy, and a surgeon's hesitation about doing a sequential bilateral surgery because of it. Other parents shared their experiences and outcomes, and suggested a second opinion.

End-of-Year Awards
The topic of awards for elementary school children was brought up. It's particularly hurtful to an overlooked child when a teacher decides to give awards (academic, etc.) to most but not all of the students in a class. Parents shared stories where just a few children were left out of awards or rewards for the class. The common sense of teachers who recognize all but 2 or 3 kids in the class, or who publicly humiliate elementary school-age children was questioned.

IEP conundrum
The hypothetical question came up of whether or not it is legal, if a child requires CART or C-Print to access the curriculum, for the school district to provide this service but only if the student goes to another school in the district where the service is more readily available. Both sides were argued.

Cochlear's New Implant
More information surfaced about Cochlear's new implant in the form of an article in The Age, an Australian newspaper. There is speculation that Cochlear will gain US FDA approval soon and will unveil its new internal and external devices at the CI2009 Conference in Seattle this month.

Raleigh-Durham area
School quality in this part of North Carolina was discussed, with positive impressions but no personal experience shared.

Buff-wear
A parent shared that a good product for securing sound processors during active sports, etc. is the Buff, that some contestants on Survivor wear (no, not the Season 1/Richard Hatch type of "buff"!) You can get one at REI. For demos on how to wear the Buff, visit buffwear.com's site.

Children with implants and illness
A parent asked if children with cochlear implants seemed more susceptible to common colds, etc. Some felt their child with a cochlear implant did get sick more often or for longer while others felt there was no difference or that other children in their family were sick more than the child with an implant.

Have a good weekend!
-- The CI Circle News Staff

If you are the parent of a child with cochlear implants or if your child is about to get a cochlear implant (or two), join the dicussion at http://groups.yahoo.com/group/cicircle There is an individual email option, digest option, and no email option (read posts via yahoo website.)

Additional information and resources viewable by group members and non-members alike can be found at http://www.cicircle.org

CI Circle Weekly Round-up May 22-29, 2009

2009-05-29T12:43:00.028+02:00

Your editors apologize for the lack of posts in recent weeks (we've been busy getting teeth pulled, chaperoning dances, publishing information booklets and remodeling bathrooms.) So this week we're offering a round-up of discussion topics that came up on the CI Circle Yahoo discussion group for parents of children with cochlear implants. Despite the Memorial Day holiday in the US, the CI circle was quite active with about 180 posts. Topics included:

Finding a lost rechargeable battery
A parent wondered how to go about finding an expensive rechargeable CI battery lost at a playground. She later reported that she solved her own problem: "We posted a photo of the battery and a reward and 4 days later, a gentleman called saying that his grandson had found it!"

Auditory-Verbal Therapy history
A parent from Europe who is putting together some information asked about the history of Auditory-Verbal Therapy. A veteran A-V parent replied that the approach began quite a few years ago and was known as Acoupedic approach and the Unisensory approach (1930s?). These were developed by Helen Hulick Beebe (born in 1909) and Doreen Pollack (same generation.) Daniel Ling (of the Ling 5 or 6 sound test) was slightly younger (born 1926). Some of their first followers included Warren Estabrooks, Judith Marlowe, Judy Simser, Jim and Lea Watson and others.

The Freedom Mini BTE
A parent of an infant asked about the Freedom mini BTE from Cochlear. This on-the-ear option is smaller than the standard size, but does not allow one to plug in any accessories or monitoring headphones. A parent replied their young child's audiologist activated the light option to help them tell if the processor is working. Another parent mentioned that even though one can not plug in an FM receiver to the mini BTE controller, it is possible to use a Phonak MyLink neckloop-type FM. The discussion evolved to include the pros of the Advanced Bionics body-worn Platinum processor (advantages are ruggedness and only having one thing on the head.)

A Mum Moment
(no paraphrasing here, just the post in its entirety)

"oh have to share this mum moment - my "baby" is almost 17 and in year 11. His school has a combined year 11/12 formal and as part of that they have dance tuition with someone from outside the school coming in to teach them. It is good they do progressive style dances with everyone involved, but they use modern music so the kids enjoy the experience with music relevant to them. Sooo because I am in admin at his school, I wandered over to the gym today during dance tuition. There was my boy in the thick of it doing an awesome job following the guy giving instructions, he did have a mic and basic kind of soundfield set up I think it was, but he was giving counts over the top of the music. If you scanned the room, you wouldn't have picked him but for the fact he is one of the tallest kids there. It was a special moment. To be followed by the special moment of the actual formal where he has asked one of the girls in his most of his classes and she said yes. In fact she said yes and then did the Toyota "oh what a feeling" jump as she walked away LOL"

Implant technology
A parent in the midst of choosing a cochlear implant brand for her child wondered how many output circuits the Med El implant has. The answer is 24.

New Cochlear device on the horizon?
Parents discussed what they have heard about new products coming from Cochlear. One parent says her child received a new internal device that is smaller. Another parent said they heard that clinical trials are under way in children in Europe and Canada for this new device. Parents reported hearing that there is also a new BTE processor coming from Cochlear that its called the Mulberry, though this is most likely a temporary name and not what it will be called when released. Rumored features of this new BTE include an integrated FM receiver, being truly waterproof as opposed to water-resistant, being small, and having a remote control. It will also supposedly come in "iPod-like colors." The new processor might be available later in the year.

Trying to buy an FM
A parent wants to buy an FM system for her child for home use (the child has one at school, but it belongs to the school and remains at school.) She recounted the difficulty in finding someone to sell it to her that would take her insurance. Phonak does not sell directly to parents, only to audiologists and schools. The parent could not find any durable medical equipment dealers in Pennsylvania that will purchase it for her and bill her insurance. Phonak: Please make your FM products more available to parents!!!

Using a CI and Hearing Aid together
A parent of a school-age child who currently uses hearing aids but will be getting one implant wondered if there are children who use a CI and hearing aid together. Indeed there are, as several replied. This is called "bimodal hearing" and has advantages over just hearing with a CI in one ear alone.

Swimming with a CI
A family that recently had a pool installed asked for details about how children are able to swim and hear while wearing their CI processor. Several people responded that their children enjoy this very much and that it is fairly easy and safe to do. Ingredients include a BTE processor that uses a rechargeable battery (disposable batteries require air to run and may stop working temporarily), a waterproof baggie such as the aLoksak or a large latex balloon, and a lycra or silicone swim cap of sufficient size.
Video of swimming and hearing with an implant processor

Rechargeable 675 batteries
The swimming discussion morphed into a discussion of how to use 675-type Zinc-Air batteries in a nearly airless environment (like the Aloksak baggie.) A parent found that there are now some rechargeable 675-size hearing aid batteries, but no one has reported trying them yet. Sources for the rechargeable batteries are www.batteryjac.com (the same Solar battery, made in Botswana (a sunny place), is also available through Amazon.com) and microbattery.com (675 charger coming soon.)

Happy Summer!
from the CI Circle News editors

If you are the parent of a child with (cochlear implant(s) or if your child is about to get (a) cochlear implant(s), join the dicussion at http://groups.yahoo.com/group/cicircle There is an individual email option, digest option, and no email option (read posts via yahoo website.) Additional information and resources viewable by group members and non-members alike can be found at http://www.cicircle.org

Cochlear Americas Celebration Anaheim March 2009

2009-04-13T07:30:00.009+02:00

First up the picture above is the pattern of the carpet that the conference was held - I thought they chose it on purpose, apparently they didn't notice until after we all got there! Cool or what???

WOW what a whirlwind! I travelled from Down Under to Anaheim California for the conference and to meet a very dear friend of mine for the first time.

The Cochlear Celebration Conference was of course put on my Cochlear and was for recipients of the Cochlear brand cochlear implant. There 600 people attending the conference with a 60/40 split between adult recipients and parents of children who were recipients.

While we "grown ups" were attending the sessions at the conference, there was child-care for the kids and "Teen Scene" for the older group. We later found out that the 20 finalists from which the 5 Graeme Clark Scholarship winners were chosen, actually spent some time with the Teen Scene group. What a brilliant idea, what amazing role models for these teens to see - older successful cochlear implantees out there doing their thing in the world!!

When we had break times or other social events, it was so heart warming to see the children and all the friends they had made at the conference. Many of these kids attend mainstream school and so may not get to see a lot of other children with cochlear implants - it was so neat to see the friendships developing and seeing the hugs and tears as they said their goodbyes to each other on the last morning.

The conference was jam packed with information and events. The opening was incredibly moving and brought many of us to tears, even us "more experienced veterans" of the journey. Kassie DePaiva who is a singer and actress of "One Life to Live" spoke at the opening as did her son JQ. They were brilliant and Kassie moved us to tears as she spoke from the heart and as fellow mothers our hearts soooo heard her. Mind you she had us in tears before she began her "official presentation". Her presentation followed a presentation by Jim Patrick (Cochlear's Chief Scientist). When Kassie stepped up on the stage, she asked Jim to come back on to the stage. At which point, she wrapped her arms around him and gave him a big hug and said "this is from all the mommas out there" - well of course we were all bawling our eyes out by then!!!

Rachel Chaikof shot a lot of video at the opening and at the conference so go visit her site to read more and see more photos.

The seminar presentations covered a range of topics including

Bilateral implantation
Music Enjoyment with a cochlear implant
Raising a child with a hearing loss
Assistive Listening Devices and how they can help you
Enjoy More Freedom (understanding the technology and the options)
How'd they do that (a virtual tour of how the Nucleus Freedom Cochlear Implants and processors are made)
Path to School Success
Poised for Greatness (a panel of exceptional young adults telling their stories)
Future technology enhancements
Hearing Loss and Relationships
Adult Rehab - tips and tools

The sessions were all very informative and there was a great range of options to suit both parents and adult users.

The morning expo was filled with representatives across many organisations. Many adults took advantage of being able to try some assistive listening devices with support from the companies that provide them. Kassie gave up her time to both meet and have her photograph taken, and sign autographs for participants. She is a wonderfully warm person who truly was just another parent, yet used her acting role to connect with people. She gave up a lot of her time in support of the conference and Cochlear.

Perhaps the other thing that I truly noticed most was the accessibility of the senior management of Cochlear for the duration of the conference. Chris Smith (President of Cochlear Americas), Chris Roberts (Cochlear's Global CEO) and Jim Patrick (Cochlear's Chief Scientist) were available through out the conference speaking to adults and parents and having a multitude of photos taken with children! They were there for all the social events including the Volunteers Reception at The Aquarium of the Pacific and the Celebration Private Party at Disneyland. They didn't just put in an appearance and head home, they stayed for the duration of the events and were truly just part of the crowd. They certainly showed a genuine concern and warmth and welcoming of the parntership between user and the company that makes them.

Naomi with Dr Chris Roberts (Global CEO of Cochlear) and Jim Patrick (Cochlear's Chief Scientist).

The event was amazing. It was so well organised and co-ordinated and the ground staff for Cochlear that ran this show, worked tirelessly throughout the conference. It was really one of those "preaching to the choir" type moments, where everyone that was there had in some way seen the amazing change a cochlear implant had made in the life of another personh. It was truly a celebration of the good that come to the lives of many people - many adults described it as "getting my life back" where hearing loss had isolated them, robbed them of their confidence and their ability to maintain their employment. Their implants had given them all that back and so much more. It was great to hear so many positive stories from the adults that can describe to us what it is like for them.

As a veteran mother, I was just blown away by how well these young children that are being bilaterally implanted at such a young age, are doing. Their speech and language was amazing as was their ability to cope in noisy situations like large conference exhibition halls, crowded hallways or large dining rooms. Truly they barely even battered an eyelid with all that noise - it was just incredible. I'm sure that other manufacturers have similar events for their recipients and based on my experiences at the Cochlear Celebration I would encourage you to go - you learn heaps, meet a whole new group of friends and contacts and really just have your spirits lifted.

Oh and of course there was the CI Circle Lunch - more on that in another post, but we did manage to "rope in" a couple of mothers were not on CI Circle (yet) but were keen to be. Through out the weekend we had plenty of time to "plug" our group and our site and you would be surprised how many didn't know about us. Well at the top they do now - I told Chris Roberts (Global CEO) about our site one night and he looked it up later that night. The next day he told me how impressed he was by the webpage and resources it has - so go team!!!!

When they need new devices.......

2009-04-10T17:03:00.009+02:00

Having two deaf children who use cochlear implants to hear, I know that there will likely come a day when they need their internal devices replaced.
We all hope the devices will hold out until they are much older and have children of their own, but what if they need new devices sooner? I used to ask myself this question when it recently became a reality for my son.

You worry as a parent that you’ll get a call one day from school telling you that your child’s cochlear implant stopped working after he/she took a small bump on the head with a basketball during recess...
You worry as a parent that your child will wake one day and hear mostly static or odd noises. You frantically change all cables and batteries, anything you can to make it better but it doesn’t help, meaning the device itself is possibly failing…

This is exactly what Rachel Chaikof experienced when her internal device began malfunctioning. Here is some of that story found in more detail as told by mom Melissa by clicking HERE

“In March 2003, Rachel came to my room at 7:15 in the morning very agitated, saying that she put on her processor and heard only loud, painful clashing sounds. She had already changed the batteries and cables. I quickly got out her spare processor. She put that on and burst into tears, saying that it didn’t help. This was different from anything we had ever experienced before, and we all knew without saying it that she likely was experiencing a failure of her implant.”

What happened next? Rachel had surgery six days later to replace that device. However, like a true champion, she attended school in silence until the day of her surgery. This post was made by Rachel herself, a couple of weeks following that surgery to replace the failing device.

“Thursday, April 10, 2003
I can hear again!
This afternoon, today, I was sitting in the audiology room, waiting eagerly for my hook up so I could hear again. My audiologist handed me the Sprint processor, the body worn one, to start out with for mapping. I put the microphone and the magnet on my head. My audiologist started to press the keys on the keyboard to map me. I heard some beeps. She asked me if I could hear them or not. I would either say, “Yes, I can” or “No, I don’t hear anything.” My audiologist turned the processor on and I heard some sounds, but not too well. All I heard was mumbling sounds and it sounded soft. My audiologist raised it a little and it sounded better but still mumbling and hard to understand.”
“On the way home, I asked my mom to test me by saying one word to see if I could understand what she was saying. She said some words and at most of the time I was able to understand without any problem. My brother even tried saying ‘hamburger’ while he was in the back of the car, and I was able to get it.”
You can find more from Rachel on this subject also on her blog at:
Cochlear Implant Online

Rachel has actually had two device failures. If you continue to read more of her story from her site you’ll read that the second time around after her device failure, she required more intensive audiological intervention. Today however, she is happy and hearing well with those bilateral cochlear implants at age 22. She’s presented at events and spoken around the world about how grateful she is to have the opportunity to hear with her cochlear implants.

Our situation was a little different. My son needed to have a new device inserted recently because he developed a very rare and hard to conquer infection. In fact, we went months not really certain what was causing his intermittent pain. He could hear very well and heard no strange noises to lead us to believe that his issues were with the device itself. Finally he began showing other symptoms of infection and when several types and courses of antibiotics didn’t work, he had it removed. Four months later he had not just one cochlear implant inserted but became bilateral also.

My questions were: Will he ever hear as well as he did before he had his first device removed? How long will it take to retrain him to understand speech? After four months will they be able to get the electrodes back in?
You may notice these concerns are far different than before with his first cochlear implant surgery. Having been thru the actual surgery before, I felt more comfortable with that part of it and knew the benefits of having the cochlear implants and hearing anything were outweighing my uncertainties of just how well he’ll hear. At this point I was just hoping that the sound he might access be enough to aid his speech reading.

So I for one can take comfort in reading about those who have been thru this before like Rachel. I am finding like with Rachel’s case, my son is quickly picking up on learning to listen/hear much quicker than I anticipated. He too, could already do some repeating of simple sounds before we left the first mapping session. He’s only four days out now and can hear things like music (as long as I tell him what song is playing), he can hear me in another room sometimes, and he is beginning to understand some speech and is inconsistently turning to his name. He walks around saying “I can’t believe I can hear!” He had been used to the silence since we needed to wait four months before reimplanting his ear that was infected. Most of the time, when these kids are in need of a new device, it may be unfortunate and even unpredictable. But in many cases, it’s not like starting completely over, they have that experience behind them now and things usually move along where before, they sometimes have no prior experience to sound.

Here is my son talking about his truck he customized, while I do a quick listening check with him, covering my mouth to see if he can actually hear and reproduce the sounds I make. He has enough access four days out to aid in his speech reading, just as I had hoped. We are standing on the bridge now between needing visuals (speech reading) and being able to hear without visuals. There are no guarantees that he will be able to keep this device, should his infection return, but if he does, we have no doubt that after his auditory training he will be hearing as well if not better now that he’s bilateral, than he did before. Rachel’s story is just one from cicircle that I take comfort in, knowing that we could possibly follow the same path having bumps in the road we must overcome.

(We decided to clip the processor to his shirt rather than tape it to his ear on the side that had previously been infected, so we can watch for redness and itching. That's why you'll see it with a longer cord vs. the regular BTE on the opposite ear.)

He will begin Auditory Therapy next week and is expected to need that for about a month with weekly one-hour sessions. Typically we would be doing Auditory Verbal Therapy but he doesn’t need the speech part of it, he only needs the auditory training, the learning to listen again. I think there are many cases where parents want to send their kids to a listening boot camp (even if they have typically hearing children).

**these infections are extremely rare and in fact I found only one other mom on cicircle with this experience, she has helped me tremendously! Even our doctor had not seen a case like this before. My daughter also uses bilateral cochlear implants and has never had any issues to date. I personally feel that cochlear implants have improved my children's lives and they both are very grateful to have the opportunity to hear. Despite our recent bump in the road, I would not have changed my decisions in regards to allowing them to have that opportunity **

Val Blakely
Cicircle News Staff

New Book Featuring Our CI Kids!!!

2009-03-25T12:10:00.000+01:00

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?

2009-03-18T11:41:00.013+01:00

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

2009-03-13T08:53:00.008+01:00

"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

2009-03-04T19:10:00.014+01:00

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

Mainstreaming your child with a cochlear implant

2009-02-27T13:41:00.003+01:00

As part of our blog site, the editorial team decided from time to time we would pick a topic of interest from the week on the discussion forum and discuss it here.

One of the major topics this week started off with a parent asking what other parents were doing with regards to their child with a cochlear implant in the mainstream setting - did the child have an aide working with them, or were they mainstreamed without any additional support?

A range of responses ensued, further highlighting other issues around mainstream settings.

Some students were mainstreamed with a school aide supporting them directly in the classroom. Other students were supported by a Teacher of the Deaf (TOD) who would visit the school and withdraw the child from the classroom to work with them one to one. In some instances the TOD may work in the class with the students.

For those that had an aide, there were varying amounts of time, some for a certain number of hours a week, and in some instances where a child is using ASL, they may use a combination of an interpreter for some lessons, and then an in class aide for those lessons in which the teacher is fluent in ASL. Some parents described having the aide in the classroom for some of the time as a way of improving the student to teacher ratio rather than using it for direct one to one time. Still other students spend time in the school "resource room".

When parents request an aide for their child as part of the Individual Education Plan (IEP) process, there are some things to be aware of. There are many very good teacher aides however the vast majority offered by schools are often untrained and inexperienced with working with a child with a hearing loss. School districts save money by hiring someone of a lower pay scale. That said there are certainly some outstanding aides, so don't dismiss the idea outright. Perhaps the issue that maybe isn't discussed often enough is "what is it that the aide is supposed to be doing with the child?" Is the aide going to spend time withdrawing the child one to one to teach the child unknown vocab, pre-teaching concepts? Is the aide going sit right alongside the child and even turn his/her page for them? (Don't laugh too loud, it has happened!!) Where the role of the aide is undefined, there is a minefield of potential problems. If the aide does not have clear direction, then they may feel they need to "do everything" for your child to justify their presence. This does not sit well when we are trying to raise independent children with a capacity to self-advocate. However if the aide is told to simply "shadow" the student and only intervene if necessary, then the aide will be comfortable sitting back and allowing the child to try, since they are directly following their role as defined in the IEP.

By and large school resource rooms should be for what we call curriculum support. A place where the staff know the school, know the program and can help the child with some additional time and support to reinforce concepts taught in the classroom. They may also even pre-teach some content so the child knows what is happening when a new topic is started in the class group. School teachers do not have the specialist training in deaf education that TODs have, and as such it is unfair to expect them to fulfil a role that expects that of them. TODs have an understanding of the kinds of speech gaps that students with a hearing loss may have. They also have an awareness of the specific areas of learning that are often more difficult for children with a hearing loss, for example double meanings.

Where students have a TOD visiting them, they are often withdrawn (or "pulled out") to work by themselves with the teacher in a separate room. TODs, because of their qualifications and training, will focus on more specific areas of language acquisition. Depending on the child's level, they may be doing very basic tasks for example pre-teaching or post-teaching, or for an older child, specific aspects of language, eg idioms, auditory memory for multiple tasks/requests. The much older teen may perhaps even be working on specific aspects of self advocacy and how to manage the multitude of teachers and classrooms in the middle and senior years of schooling. (For more information, you may wish to read one of our past blog posts, "What is a TOD"? written by a TOD.)

There are a vast range of options for supporting the child with a cochlear implant in the mainstream setting. This will depend on things like age at diagnosis, age at implantation, any language delays on starting school etc. The best way for parents to go about this process is to gather as much information as possible about what other parents & schools in their district and beyond, are doing and using that information to help plan what might best suit the needs of the child. However perhaps the issue that is as important as what that support might look like is what are the specific roles of the support personnel? Parents should be making sure that those roles and responsibilities are clearly defined in the IEP document so that everyone understands their part in the process. The other thing is that any goals set need to be reviewed at specific time points to see whether or not your child is meeting those goals. If they are not, perhaps the support services need to be re-evaluated to make sure your child is getting the support required. If by chance your child is meeting those goals, this is not a reason for the school to cut that support. They are meeting those goals because the support program is working the way it is supposed to!! BUT that might be a whole future blog!

If you would like more information including some helpful advice for teachers, like repeating instructions, seating, acoustics, check out this link, starting on page 8...click here

Little Drummer Boy (and his neurotic mom)

2009-02-20T20:23:00.015+01:00

We're not a family of professional musicians, but we do enjoy listening to music and all have our eclectic tastes. Our older son, Colin, is a natural on the piano and keyboards and plays for pleasure. My husband and I curate our personal iTunes libraries and have holy wars of whether or not The Beatles trump Nine Inch Nails. But music is not something our son, Jeremy, who uses cochlear implants to hear, has gravitated towards in nearly the way he's embraced his Wii or Lego Bionicle collection.

Jeremy got his first cochlear implant at age 4. Even though 4 is considered late by today's standards, he gets a tremendous amount of benefit from his CIs and attends a regular elementary school where it's difficult to pick him out from the crowd in terms of academics, speech, or language. When it comes to music, I think he realizes he doesn't hear it the same way other children do. Still, for the past several years he has been looking forward to the band program that 5th graders at his school can participate in. He had his heart and mind set on playing the drums.

Finally, 5th grade arrived. We went to "band instrument pick-up day" where we were issued a drum pad and drum sticks. The idea of the drum pad -- which looks like a grey octagonal mouse pad on a heavy board -- is that it allows kids to practice the rhythms without having to lug a large and heavy drum on the school bus and home. He got a couple of drumsticks and a cool electronic metronome to go with it. (At the weekly lesson at school, drum students could play a real drum. )

At first this was pretty exciting. Jeremy proudly showed off his drum pad to Dad when he got home from work. But within days, reality set in. Tapping out rhythms on a drum pad is about as exciting as tapping a pencil on a desk. Combine that with Jeremy's perfectionism and my lack of familiarity with percussion (I can read music but know nothing about drums), it's a scene set for frustration. Inevitably, he'd put off practicing until the evening before the weekly school lesson. Jeremy and I would be exhausted from the day -- me from making dinner and him from doing his homework. He would reluctantly begin drum practice, with me coaching. (What we both really wanted to do was sit down at the end of a long day and veg in front of the TV.) To make matters worse, we misplaced the metronome and had to rely on the headache-inducing built-in metronome of our Yamaha keyboard. (CRACK! ding, ding ding, CRACK! ding, ding, ding...)

Jeremy was new to reading music and I had to review with him the difference in quarter and half notes. And I wasn't quite sure how one would really play a half-note on a drum anyway. You can't really hold a note, can you? So why, then, didn't the score just say "quarter-note, rest"? These questions and doubts infiltrated my mind and seriously undermined my ability to help. (My yoga teacher would be appalled.) And it was not even my drum!! I was anti-helpful. Jeremy felt he had to get each piece exactly right before moving on. If he didn't do it perfectly, he would crumple. Drumsticks would fly. I began to wonder if drums were such a good idea after all. In spite of this, Jeremy's ability to do a drum roll was amazing! And he did "get" the rhythm. Totally.

Around December, things began looking up. The drum pad was really so boring, that I figured maybe a way to lift Jeremy's spirits was to get him a real snare drum. Thank you, craigslist.org! I found a drum for a reasonable amount of money and drove to a house in the neighboring town to pick it up, hoping the seller wasn't actually a psycho killer with an elaborate scheme to lure unsuspecting (and even suspecting!) drum buyers to his lair. He wasn't. He was a perfectly nice guy and a professional drummer, and I walked a way with a steal. It was only 3 weeks before Christmas and 5 weeks before Jeremy's birthday. The drum would have made a perfect present, but the agony of the past few practices made me feel it was cruel to withhold it for that long. I gave him the drum immediately. Jeremy was thrilled! The drum is loud! Thank goodness it's possible to adjust the snares and to use a pad on it. I figured out a way to help Jeremy mark his music with a red pencil so he would know which beats to count and which to play. He still put off practicing until a day or two before the lesson, but was significantly more enthusiastic about band in general.

I thought maybe that besides reminding (nagging) Jeremy to practice, I should disengage myself from the practice sessions. It was his thing after all, and I was introducing unnecessary anxiety and doing more harm than good. If he asked for my help, I offered to simply "keep him company" in the room where he was practicing. I desperately wanted to call the band teacher and ask how Jeremy was doing, but I held back. The teacher is the 5th grade band director for the entire school district and also teaches the middle school band students. Although I was in need of reassurance, I knew he had his hands full and figured he would call me if there was a serious problem. But how was Jeremy doing??

Before I knew it, the date of the first 5th grade band concert arrived. (So soon? Would he be ready?) My husband, Jeremy's brother, Colin, and I all arrived at the concert, which was held in the auditorium of Jeremy's elementary school. We listened impatiently to the 4th grade string orchestra (they played 12 excruciating pieces!), and then the 5th grade string orchestra. Finally it was the band's turn. Jeremy would be playing the bass drum in the concert and his friend, Reid, was playing the snare. To our delight, Jeremy and Reid stood, in their button-down finery, in the back row clearly visible to the entire audience! For all of Colin's band concerts, he was hidden in the 3rd row with his saxophone. We considered ourselves lucky if we could catch a glimpse of Colin's foot tapping underneath all the chairs. But there was Jeremy with his very large drum! He looked proud! He was smiling -- beaming! ...but I was nervous. What if the loud volume of the entire band flooded his CI sound processors and made hearing anything impossible? Surely that bass drum would be loud and if he made a mistake, everyone would know. Would the other players be annoyed?

The band director waved his baton. The band started up. Boom, boom, boom, boom went Jeremy on his bass drum in perfect time with the music. We smiled, watching Jeremy mouthing the count of the beats - ONE, two, three, four, TWO, two, three four... It went perfectly -- in fact, the beat he set led the band. We were so proud of Jeremy, and so thrilled at the unexpected surprise of actually being able to watch him play. And the bigger thrill of seeing him do yet another thing that years ago I never imagined he'd be able to do ever didn't leave me for days. Indeed, as another parent said, every sound is a present.

by Lydia

(Lydia and Jeremy live on the street in New England where the American Christmas carol, The Little Drummer Boy was composed.)

Just for fun, click to view: Jeremy at the piano

CI Circle - the next generation

2009-01-21T00:33:00.008+01:00

CiCircle4Teens

When our children are in their preschool years they often have many opportunities to socialise with deaf and hearing impaired peers through playgroups and other activities organised by the early intervention provider.

With the available technology today, newborn screening and quality intervention programs, many of these children go on to attend their local mainstream school with their siblings and other neighborhood friends - which is great!

The down side to that is that often the deaf/hearing impaired child maybe the only one in their school who has a hearing loss. In today's busy lifestyles often times it is tough for families of deaf/hearing impaired children to get together regularly.

One of the co-founders of CI Circle, Karen, found that her daughter was keen to make contact with other teens who have cochlear implants to be able to chat with them and share experiences. And so mother and daughter have joined forces to create CiCircle4Teens. Please note that this is a forum for teenagers (12 year olds may apply) but strictly NO ADULTS.

In the interests of screening members to ensure the protection of the teens using the new forum, please contact the list owners directly for more information about subscribing to this list.

You can contact them at this address cicircle4teens-owner@yahoogroups.com

Against the Odds

2009-01-11T00:16:00.004+01:00

Tuesday December 16th 2008

Today was a very special day for my family, personally. Almost twenty years ago when my youngest son, Alexander, was diagnosed with a profound hearing loss I did not expect that he would graduate from high school with his SACE, after having been mainstreamed from Reception. For some time in the early days, my husband and I didn't even think that oral language was a realistic option for him. So today, when he walked out in his academic gown, to receive a Bachelor of Economics at the University of Adelaide, you can imagine how our hearts swelled, and how once again we said silent prayers of thanks for the brilliant, selfless Professor Graeme Clark, who invented the multichannel cochlear implant and put a huge chunk of his life into constantly improving it, so that the quality of life for thousands of deaf adults and children around the world could be immeasurably improved.

From left: Alex's grandfather, Robyn, Alex, Peter (Alex's Dad) and James (Alex's brother)

The potential outcomes for children born deaf and hearing impaired today are so different from twenty one years ago, when Alex was born. Dream ambitiously for your children - your dreams are not unrealistic. And if your greatest dream is for your child to be happy and have a caring nature then you're probably already half way there.

Article written by Alex's mother, Robyn.

Editors Note: Alex was born with a profound hearing loss in 1987. At that time cochlear implantation was not readily available, and in fact wasn't until Alex was 3. At that point in time, despite intensive therapy and a lot of work by both of his parents, Alex only had a vocabulary of about 50 words. The vast majority of his words were only intelligible to his immediate family. When the opportunity for a cochlear implant became available his parents travelled interstate (about 9 hours each way) first for him to have his surgery and then for him to attend follow up mapping appointments. They continued to do this until a program was set up in their home state that Alex could access.

In fact so passionate did Alex's mum become about supporting deaf children, she went on to train as a teacher of the deaf and then became a certified Auditory Verbal Therapist, and is now Clinical Program Manager of the Cora Barclay Centre - the service that supported Alex for all those years!

Thinking about your approach to school

2009-01-05T06:40:00.003+01:00

Ever had one of those days? You know the kind of day when the alarm doesn't go off, then you have a fight with your partner, your kids won't get out of bed, then fight non-stop when they do? Things just keep going wrong and by the time you get to work you are exhausted and your brain is frazzled. It is always those days that you manage to make a stupid mistake - not intentionally and not because you don't know the rules, just because on that day you were not at the top of your game, you were distracted and you just screwed up. I'm sure all of us have had at least one of those days.

How ironic is it then, that if the person having a bad day happens to be the teacher of our deaf/hearing impaired child, all that empathy just flies out the window? Where our children are concerned somehow we manage to lose sight of any rational thought process and go purely to maternal/paternal protection of our young.

Whilst this is a deliberate over exaggeration, it does highlight the fact that we as parents sometimes can be guilty of coming on too strong, or "riding" our children's teachers too hard.

If your child is in the very early years of schooling, helping out at school can be great for you, your child and the teacher. When you offer to go on field trips, help out with cooking/craft classes or other such things, make it clear you are just another parent there to help out. That way the teacher doesn't feel as if you will be hovering over your own child, checking up on the teacher to see if he/she is doing all that you think he/she should be, but rather you will just be there to help out. Taking the pressure off of your child's teacher by helping others in the class means a better deal for your child in the classroom too. It also gives you a great opportunity to observe your child and how they are coping in the mainstream classroom. You can observe how your child is included, and also to see just how everyone else's hearing children behave/cope in the mainstream classroom.

Same if you volunteer to go into the class to listen to children read - don't listen to your own child, you can do that at home anytime. Listen to all the other kids, then in your head you can gauge how your child is doing both in reading skills and in the vocabulary they use at home compared to their class peers. You might just be surprised at how impressed you are with how your child is doing.

Whilst parents are most definitely the expert on their own child, they are not the trained educators, nor are they responsible for managing the dynamic of all those other kids all together in the classroom with your child. Don't be afraid to let teachers know that - you recognise what you have to offer but also recognise their experience and knowledge and see that working together as a team with them, will be in the best interests of your child. Make no mistake these people spend many hours with your child in the classroom, it doesn't do any good to make an enemy of them. I also believe that the vast majority of teachers see their profession as a calling and really do want to do the right by your child. They may not always get it right but I do think they are, for the most part, really trying to do just that.

If you find things are not working well in your child's educational placement or in their Early Intervention (EI) team, then of course as a parent you need to intervene. Here is where paernts need to learn the difference between assertion and aggression.

The Macquarie Dictionary defines assertion as "to state as true; affirm; delcare. To maintain or defend (claims, rights etc).

Assertion is attacking the issues and constructively correcting problems

Aggression is defined as "offensive action or procedure; an offensive mental attitude; the emotional drive to attack"

Aggression is just attacking people not the problem

It is absolutely the parent's role to advocate for their child and to ensure that their child's needs are being met. It is asbolutely not ok for parents to become aggressive or abusive towards people involved in the care of their children. In fact to do so is counter productive. If a ranting parent goes off at the professionals involved and it is witnessed by all, then it is easy to right the parent off as a "loose cannon, an overly emotional out of control parent".

Aggressive people are "never wrong"

However the parent that is calm, rational, well informed and eager to engage in dialogue with the professionals in a bid to find a solution that works, so much harder to simply dismiss. Rather than try to deal with a situation when you are angry, walk away and give yourself time to compose yourself. Gather your facts - information is power! When you are going to a meeting involving your child, do your homework. This is where time spent in the classroom by you is so invaluable. Sometimes our kids suffer from being under the microscope; their every move scrutinised and sadly often put down to their hearing loss. Your time spent in the classroom will enable you to confidently discuss what you know to be age appopriate behavioural issues that are present in many others in the class, as opposed to issues that may be specific to your child or their hearing loss.

Assertive people don't mind being wrong

Get all the information you need and make summaries of pertinent points you want to raise, giving copies of the summary to all those attending the meeting. That way you can move through your list, and if people try to go off topic with irrelevant arguments, you can pull them back to the "mini-agenda" you have in hand. A parent that presents as well informed, especially in relation to legislative requirements and existing precedents in the school district of concern, has far more power to persuade. It won't take long before the professionals attending can see that many of their "old arguments" are not going to work and that this parent isn't going to take "no" for an answer and so they had better knuckle down and try to find a mutually agreeable solution with the parent. Similarly parents who present in this way, might not be "liked" as such, but they will be respected. They will gain rspect by being steadfast in their resolve but in a calm and rational way, and this gaining of respect has positive implications for future dealings with the same personnel.

As the old saying foes "sometimes you can catch more bees with honey".

Happy Holidays From the Pediatric Cochlear Implant Circle!

2008-12-23T21:18:00.013+01:00

The members of the Pediatric Cochlear Implant Circle would like to wish everyone a happy, healthy and safe holiday season!

A Deaf Family’s CI Journey

2008-11-28T10:37:00.013+01:00

My husband and I did not used to believe in cochlear implants (CI) until we discovered that our very own child was born profoundly deaf. It was a surprise for us. My husband and I were the only deaf members in our families. We gave our son hearing aids when he was 3 months old, but he apparently didn’t benefit enough, because he frequently took them off. He didn't even respond to a loud drum behind his back with the aids. An audiologist recommended we consider a CI, if we wanted him to have access to spoken language. I wasn't interested in it at all because the majority of what I had heard were negative stories and myths such as CI failures. I also thought the external CI device (processor) looked strange on a person's head. Many in the Deaf community probably feel the same way as I did, and I can’t blame them because I used to be ignorant about today’s cochlear implants, too.

I was pretty nervous about many important decisions that needed to be made for my child. My husband thought that our son would be fine growing up with American Sign Language (ASL). He thought he should attend a deaf school and knew he would have many deaf friends there. I, however, was concerned about the challenges he would face in the hearing community -- the same ones I had faced while growing up in a hearing family. I sometimes felt left out at the dinner table with my hearing family for example. Although I was very close to them, social times such as parties or a family reunion, proved difficult since I couldn't interact with everyone. Only some of my extended family members were willing to learn to sign or write down messages as a means of communicating with me. I also had relied heavily on ASL interpreters when I was mainstreamed at public school and college. I felt much more comfortable interacting with deaf people who use ASL and I could talk freely with them without any struggle.

It can also be challenging for me sometimes to interact with hearing colleagues at my professional job. I use ASL interpreters for group meetings and sometimes even for one on one meetings at my work. Both of our large families are all hearing and I wanted my child to be able to interact with hearing people freely and have good relationships with them, as well as neighbors and the local school students. I wanted him to be more independent in society, relying less on interpreters, and for him to be able to interact directly with hearing people using spoken English.
We also expect our son to remain part of the Deaf community, because both my husband and I -- his parents -- are part of that community. However, the number of deaf children who have received CIs in his age group has skyrocketed, because over 90% of those deaf children are born to hearing families. I'm afraid that the Deaf community, using ASL, may downsize in the future unless we start welcoming all the individuals with cochlear implants. By welcoming those who grow up with spoken English in their hearing families, there’s hope the community will evolve with that new generation instead of disappearing.

When we began investigating the cochlear implants, I saw many deaf children with CIs at a preschool who were bilingual in ASL and spoken English. This, I found interesting. I also noticed more and more deaf adults were receiving CIs. So, I started asking about this technology. I asked the parents of these children and the adults with CIs. To my surprise, most of them had positive experiences and were happy with their decisions about cochlear implants, it gave them access to spoken language unlike hearing aids. Some deaf adults with cochlear implant(s) wished that they had received a CI as a young child. I didn’t want my child to regret not having one some day.

I would rather give him a choice to either continue using or stop using the CI in the future when he’s old enough to make those types of decisions, rather than him wishing he’d gotten a CI as a child when he may have had an easier time learning to listen and speak. So I started to research CIs since we felt we had only two options for him - Option#1: CI for spoken English and ASL, Option#2: no CI, ASL only. We learned that today’s cochlear implants are much more advanced and safer technology with high reliability than ever before.

I found the CICircle parent support group on the Cochlear Americas website and joined that group. I learned a lot of new things from the group and was very surprised to hear many success stories of deaf children with CIs. I was concerned that most of those children didn't use sign language or ASL. I later learned that they didn't need it, because they were able to speak and hear well, nearly like typical hearing children. However, I still felt that they should use ASL or at least some sign language because they would have to remove the CI during shower/bath, sleep, swimming, illness, CI failure, CI external device loss, etc. I feel like ASL/sign language would be very beneficial for deaf children starting at birth for full access to language until they receive a CI and catch up in spoken language. They could either continue signing or stop, depending on their progress of spoken language. That is just my personal opinion and I do respect all the parents’ decisions if they have researched the options for their deaf children.

I met with one of the CI Circle parents who happened to live near me, and she shared her experiences with her implanted child. I also asked the audiologist more about cochlear implants and she said mostly positive things about the implant - that in general, CI benefits outweighed risks. I inquired at another deaf school nearby, but in contrast, they emphasized more heavily the CI risks rather than benefits. That made me more nervous, so once again I expressed my concerns to the CICircle about these risks. I also went to a hospital and asked an audiologist there about CI benefits vs. risks. She warned us that my child may need additional support in spoken language development because my husband and I are both deaf. She said it could mean a lot more intensive therapy outside our home than other children with CIs who have hearing parents require. That concerned us a little, but we wanted to give our child an opportunity to hear at an early age and if it didn't work out, he could always remove the external device (processor) and use ASL.

My husband and I decided to give our son a CI, and scheduled the surgery in 2007. But I admit, we still had mixed feelings and were so nervous because he was a very happy and healthy child. The surgery was the hardest part for us: it was hard to let him go under the knife. When we heard the news about a deaf girl's death because of meningitis due to her CI right at the time for our child’s surgery, that made us much more nervous. The girl who died didn’t receive the appropriate vaccinations and her CI was older technology that was even recalled. I asked our surgeon to postpone the surgery for a while until he was at least 2 yrs old or older with a stronger immune system, but the surgeon encouraged us to give him a CI as early as possible for more positive outcomes. I researched on all the medical risks of cochlear implants, discussed them with the surgeon in depth, and he responded with all the answers and that helped us feel better, though we were still nervous.

We took our son in for the surgery, but he had bad chest congestion that day and the surgery had to be postponed to the next month. I was kind of relieved, as I needed more time to think about the CI with many questions such as "Are we doing the right thing for him? Is it safe enough for him?", etc. I felt a little more relaxed when I put my child in the surgeon's hands about a month later and was so glad when the 2 hours surgery was behind us and he was back to his old self quickly on the same day.

I was also anxious for our son's first activation a month later when he was nearly 2 years old. I was very happy that his CI worked fine. The hearing sensation was new for him, but he quickly accepted it and left the sound processor on his head all day, everyday. That showed us that he benefited from it, but he didn't really understand everything for the next couple months as he began learning how to hear. His regular child care teachers thought that his CI didn't work and even suggested that he attend a deaf school! I was upset and confronted center’s director and we had a meeting with them. The director reprimanded the teachers for making assumptions without asking us about his CI. Soon our son began to hear and understand more and more. The teachers noticed this and realized he was doing well with the CI.

Our son made huge progress in spoken language in the past 1 ½ years after his first activation, though is still about a year delayed at age 3. His therapists were surprised at how fast he has progressed in spoken language, saying that he progressed even more quickly than most other children who received CI at about the same age but didn't use sign language. Our son had been using ASL since birth and uses appropriate age level ASL. I am not terribly worried about his delay in spoken language and given his progress so far, feel confident that he will catch up at some point since he already is fluent in ASL and is advanced in all the developmental areas. My husband and I are relieved that he has been progressing well in spoken language despite the fact that we, his parents, are deaf. My son has been very motivated in learning both spoken language and ASL. He enjoys receiving weekly therapy from an auditory verbal therapist (AVT) and gets thrilled to see ASL teachers every week. I think it is wonderful for him to take advantage of both visual and auditory languages as long as he uses them separately. He uses ASL at home and spoken language at school and it seems to work out well. Also, he refuses to take his CI off at bedtime every night and will cry hard if I remove it. So I have to let him fall asleep before taking off his CI. He often asks for his CI back first thing in the morning. We are so happy that we made the right decision for him because he really likes using the CI.

Our son is now attending an oral/auditory preschool program part time and regular preschool with typical hearing children for the remainder of the day. As for his future, I am expecting he will be able to mainstream in Kindergarten at a regular public school with the FM system in his classrooms. It would be nice for him to attend the same school as his hearing sibling. It will all depend on his progress in spoken language and on how well he socializes with typical hearing children. I am pretty sure that he would do well in education at a regular school without any problem but I worry about his emotional and social well being. I have heard a lot of deaf and hard of hearing (HOH) students were very lonely when they were mainstreamed as the only deaf/HOH student at regular schools even though they did very well in education and even spoke well (especially those who used oral method), yet they have always felt different from typical hearing peers. I feel it is very important for my son to have high self-esteem, the ability to socialize well with typical hearing children and have a good number of friends at a regular school. I would also like him to have some deaf friends who are also bilingual in ASL and spoken English in addition to those who use ASL or spoken English only, as part of a good support system. Maybe I will send him to a deaf school that provides both spoken language and ASL when the time comes. Who knows -- by then he may even have some opinion of which school he would rather go to and will tell us!

Written by Anonymous Mom to a deaf child with a cochlear implant

Edited by the Cicircle News Staff

Determination and Perseverance =Full Scholarship

2008-11-19T17:14:00.009+01:00

I am an active member of the Pediatric Cochlear Implant Circle, however for those reading who are unfamiliar with our story, here is a brief background explanation: John was late diagnosed (no newborn screening then) and didn't receive his hearing aids until almost 3.5 years. He had the receptive and expressive language of a 12 month old at his 4th birthday. John received his first Cochlear Implant in 2000 at the age of 8 yrs, 8 months. That one failed and he received another one in 2004. That one also failed. We decided to switch manufacturers and he received his third one in 2007. So far, so good (fingers crossed).

John is now a senior in high school. I've been able to share a lot of his success with the CI Circle discussion group. This year's excitement was originally generated when we were informed that he was ranked 1st in his class, and that he had been selected as a National Merit Semifinalist. He began the college application process this fall. The most recent news is that he has been informed that he
a) Has been accepted to the University of Pittsburgh;
b) Has been accepted into Pitt's School of Engineering;
c) Is eligible to participate in Pitt's University Honors College should he desire to;
d) Received a letter from the School of Engineering awarding him a $4,000 per year scholarship in addition to other funds awarded from the university itself (You can imagine how that got our mind racing since we received that letter ahead of any other award letter!);
e) Received a FULL OUT OF STATE TUITION SCHOLARSHIP worth over $100,000; finally,
f) Has been invited to apply to become a Chancellor's Scholar, which offers the abovementioned full tuition AND room and board. John wants to study biomedical engineering so that he might have the opportunity to make a difference in people's lives in the way that the CI has made a difference in his. We have 4 other schools to hear from, and we are hoping that this is a sign of more good things to come.

This is all very exciting for John and our family. He has worked really, really hard over the years, and I'm so happy to see him receive recognition for that.

*But that's not why I'm sharing this news with all of you*

I want you all to know that John could NOT communicate at the age of 4 years. He didn't receive the CI and hear all sounds across all frequencies until almost the age of 9 years. He suffered two CI failures, and lost the time it took to determine that he needed to be explanted and reimplanted. At times I despaired that we had made the right choice when we decided not to use ASL. When he was between the ages of 3 and 4, the employees of the first school district we lived in told me that "He was mildly, mentally retarded", that "He will never learn to speak", that "He might even be autistic", and that "In my professional opinion, I have to tell you that I think you are committing child abuse for insisting that he become oral."

We refused to listen to them, we moved him to a school district that had a lot less money but a much better attitude, and we supplemented with all the private SLP and AVT that we could. My husband worked two jobs for several years to make it all possible, but it was worth everything when we see that John was allowed to reach his full potential. Which was all we wanted to begin with.

I hope that John's success inspires some of you who might be surrounded by naysayers. I hope that his story encourages those of you who are feeling doubtful because of setbacks. We have so been there, done that. We feel very blessed and grateful to have received the necessary support as we suffered our naysayers and setbacks. The CI Circle helped us to take a deep breath and move forward again.

Written by Diane

Is Bilateral Really Better?

2008-11-14T21:11:00.008+01:00

One of the most common questions people ask me is "So what's the difference between having a child with unilateral and bilateral hearing?"

Having a child who wears only one cochlear implant (CI), but also a child who wears two, lets me see on a daily basis how different my children are in that respect. Before I begin telling you about my kids, I wanted to mention that not everyone is a candidate for bilateral CIs. It may surprise you to hear that just because your child received a cochlear implant in one ear, doesn't necessarily mean that they would be a good candidate for bilateral CIs. Maybe they have good access to sound with amplification or a hearing aid or maybe medically they don't qualify for the surgery itself, but you should always consult your surgeon and audiologist to help determine whether your child would be a good candidate. In my son's case, his anatomy prevents him from receiving a second cochlear implant. He has severe inner ear malformations and his facial nerve is also higher than that which is found in a typical patient. In fact it took two attempts for him to receive his one CI.

When each of my children received their cochlear implant (Gage at age 3 1/2, Brook at age 2 1/2), we knew we had done the right thing. We couldn't have been more pleased with the results, they were actually hearing. It was amazing to watch them listen to new things, hearing soft sounds they never knew existed. While at the audiologist's office for a routine visit, we were told that my daughter would be a great candidate to receive a second CI. I told her we would think about it, but I seriously doubted that we would be interested. I had already read about the benefits of bilateral hearing: I knew that it would help with localization (figuring out the direction where sounds are coming from), I knew that she would have an easier time hearing, I knew she would be less tired at the end of the day. My concern was that I had a five year old boy, who I could not offer these things to. How could parents offer all these great and wonderful things to one child, and not the other? After many sleepless nights, I realized that we as parents shouldn't deny my daughter these things either, just because her brother was not a bilateral candidate. I called the audiologist's office, and we began the pre-implant process once again.

Like before, we didn't really know what they were missing until she received this second cochlear implant. She wore both processors from the beginning, removing her first one during therapy visits, so that we could try to teach her to hear with the newly implanted ear, just as we did after the first surgery. Within weeks, my now bilateral child, could actually hold a conversation in the car without me having to turn around to face her, something I still need to do with my son. Even today, over a year later, she cannot only hold a conversation in the car, but she can do it with the radio on. I also discovered that she was no longer searching for sounds, they simply found her. If they are both playing on the floor and the telephone rings, my son's head pops up, he looks from side to side, and resumes play, realizing it was the telephone. My daughter never even looks up, but might say "Is that my Nanny calling?" She automatically processes the information since she can determine direction from where sound is coming.

While outside playing, my son can hear cars pass by and for safety reasons alone, we are so thankful he can. My daughter however, can hear the cars approaching, before they pass by, truly amazing. When using the phone, my son needs to use the telecoil option on his processor. My daughter can use the speaker phone and not only hear the person on the other end of the line, but she can hear background information from that party and detect what is going on at that house. She heard her grandmother cooking as she spoke to her on the phone one day, and that was incidental information. We naturally say my son's name before we speak to him, to let him know that he needs to listen to us, but with my bilateral daughter, we can skip this and jump straight into conversation and she can follow along with greater ease. If someone approaches my son unexpectedly or doesn't announce that they are speaking to him, he always follows with "what?" needing a repeat.

Those considering bilateral cochlear implants for their child need to also consider the added expenses. The child will need to have both processors mapped as opposed to just one device, and there will be other added expenses such as batteries, copays, etc. For us, we decided the benefits outweighed these expenses and we chose to proceed with our daughter's second device. We felt that having a back up way to hear, should one CI lose sound temporarily, would be to her advantage. I can certainly tell when my daughter only has one device on, because she needs frequent repeats just like her brother. We feel good that she now benefits from the bilateral hearing, and we know that her brother has learned to adapt well with his unilateral hearing. He automatically positions himself close to the speaker, he uses closed captioning when available, and he has little sister to look to for help when he needs it.

Written by Val B.

What Are My Options For Communicating With My Deaf Child?

2008-11-06T22:19:00.015+01:00

The choice of communication and educational methodology for children who are deaf can be a very heated and emotional issue. The debate about “oral” vs. “manual” methods goes back over 150 years to the days of Thomas Hopkins Gallaudet and Alexander Graham Bell. Each method has many parents, educators, advocates, and others promoting it.

Ultimately, the choice of communication methodology is an intensely personal one that each family makes for itself. There is no one approach to language and educational development that is best for all children or families. Each family’s decision is based on preferences, priorities, and beliefs that are unique to them, as well as the resources and support available in their area and other factors.

The choices can feel daunting, but there is every reason to be hopeful! It is important to remember that there are many children (including children whose parents are part of the CI Circle Community) who are THRIVING using all of the different communication options. There are many paths to a full, happy, independent, wonderful life for your child! Also bear in mind that no choice is forever and that you can always adjust your approach if your child’s and family’s needs change.

Here is a brief overview of some of the most prevalent approaches to communication and education for children with severe-profound hearing loss.

AUDITORY-VERBAL: The Auditory-Verbal approach stresses the use of listening alone (with appropriate amplification, usually cochlear implant(s)) for the development of language. Visual supports (such as gestures, signs, and speech-reading) are not usually used and speech-reading may be actively discouraged/prevented during therapeutic activities by the adult covering their mouth, positioning themselves behind or beside the child, or by using distractions such as games and toys. Structured therapy activities stress the development of auditory discrimination and other listening skills, as well as receptive and expressive language development. The Auditory-Verbal method, which practitioners often refer to as the “A-V lifestyle” also emphasizes parental involvement in the therapy process, carryover of therapy targets into everyday activities, and education with typical, hearing peers. Some families choose to work with an AV therapist and apply many of the AV principles while also using a visual communication method at home and/or school.

AUDITORY-ORAL: The Auditory-Oral approach also emphasizes listening (with amplification) and spoken language, without the use of sign language or other systematic visual supports. Unlike in the A-V approach, speech reading is not discouraged and may be actively taught, based on the child’s need. Most families and therapists report that children with cochlear implants, especially those implanted in infancy/early childhood, do not rely on speech-reading to understand speech, although they may use it in noisy situations or when their equipment is off. Most “oral deaf education” programs, both private schools and public-school based programs, use the auditory-oral approach.

CUED SPEECH: Cued Speech is a system of hand-shapes and positions designed to facilitate speech reading by representing sounds. The use of the hand signals helps the listener distinguish between sounds (like /b/ and /p/) that look identical on the lips. Cued Speech is NOT a language; it is a method of representing spoken English (or any spoken language). The advantage of Cued Speech is that it gives the “listener” access to all the phonological information of spoken English whether or not she can hear them, which may help with both language and literacy development. Compared to sign language, Cueing can be learned very quickly, and any word (including proper names, words in other languages, etc) that can be spoken can be cued. Cued Speech never entered into wide-spread usage, although some individuals and their families achieved a great deal of success with the method and advocate it enthusiastically. Most cochlear implant users are able to access the phonological information of spoken language without the visual support of cueing, but it remains an option that families may want to explore.

American Sign Language: ASL is a distinct and complete language, with its own vocabulary and syntax not closely related to that of spoken English. It is the first and primary language of many Deaf adults and children (as well as the first language of some hearing children who have Deaf parents) and has a rich history and culture (with poetry, storytelling, etc). For most hearing parents of deaf children, of course, it is an unfamiliar foreign language that they will need to learn from scratch if they want to teach it to their child. Having evolved for communication among Deaf people, ASL (and other sign languages – there are many) is a visual-spatial language that uses movement, location, facial expression, and many other features to carry meaning.

It is very difficult to speak grammatical English and sign grammatical ASL at the same time (the neurologist Oliver Sachs, in his interesting if now somewhat dated book on Deafness, described it as “like trying to speak English and write Chinese at the same time.”) There are also systems that use manual signs (many of them borrowed or adapted from ASL) as well as invented signs and markers to depict spoken English manually – the most widely used of these is called Signing Exact English 2. These convey the grammatical information of English but can be challenging to learn and use. Most people (hearing and Deaf) sign somewhere along the continuum, using whatever combination of ASL and SEE signs and grammatical features they feel comfortable with (this is sometimes referred to as Pidgin Sign English, PSE).

There are many different ways that families can use sign in communicating with their deaf children. A few are described below. The label “total communication” (TC) is used to describe any approach that combines spoken language and signs. When considering a school program described as “TC,” parents should observe it carefully to determine what approach is used.

(Note: We have included this video to provide a visual representation of total communication in a school, we are not advertising in any way the school represented in this video)
KEYWORD SIGNING/SIGN SUPPORTED SPEECH – When they learn their child is deaf, many parents explore signing as a communication option. Those who opt to make signing, as well as cochlear implants and spoken language, part of their child’s communication experience have several options. One approach is referred to as “keyword signing” or “sign-supported speech,” among other labels. Families using this strategy use spoken English (or another spoken language) as their primary method of communication, but add some signs to support their child’s emerging language use and provide a “bridge” to spoken language. The number of signs learned and used is usually fairly limited (from a handful to a few hundred), representing some of the most important concepts and objects in a young child’s life.

Signs are always combined with speech, and usually only the most important words in the sentence are signed (e.g., a parent might say “Get your shoes” while signing SHOES or “I want another cookie please” while signing “WANT COOKIE PLEASE.”) Most families using this approach gradually fade the signs over time as the child’s spoken language develops, although some continue to use signs when the child’s implant is off (e.g., in the bathtub or at bedtime). This approach is very similar to the “Baby Signs” strategy popular with some families who use signs to “jumpstart” communication with their hearing babies and ward off frustration while speech is developing, although families with deaf children often learn more signs and use them more systematically.

SIMULTANEOUS COMMUNICATION – In the simultaneous communication (sim-com) approach, spoken and signed language (usually a manual English system like SEE2) are used at the same time. All messages are spoken and signed in order to convey the information both auditorally and visually. While some people are able to become very proficient in signing and speaking at the same time, others find it difficult and may simplify their sign, their speech, or both.

BI-LINGUAL/BICULTURAL -- The Bilingual-Bicultural (or Bi-Bi) approach aims to develop fluency in both ASL and English and allows children to function as members of both the hearing and Deaf communities. The philosophy of Deaf education developed a number of years ago and initially focused on fluency in ASL and written English, but the advent of cochlear implants makes bilingual fluency in spoken English an achievable goal as well. The Bi-Bi method stresses the integrity and separation of the two languages, so sim-com is rarely used, although one language may be used to explain vocabulary, structure, and concepts of the other. Many, but certainly not all, parents who choose this approach are Deaf themselves or have previous experience with Deafness. Learning ASL from “scratch” and teaching it to your child is a challenge, but one that some parents, drawing on support from schools for the Deaf and Deaf adults in their communities, have embraced.

By Marny Helfrich, M. Ed. As an early childhood special educator by training, I had the privilege of working with young children with hearing loss and their families for five years in an inclusive, open-minded, spoken-language focused program. In that time, I was lucky enough to get to know families using a wide range of communication strategies, from strictly AV to Bi-Bi, and to see their children growing and thriving!

The Unexpected - An Adoption Tale

2008-11-05T20:37:00.013+01:00

Like most first time parents, we had hopes of receiving "that perfect child". Our "perfect child" had been born at twenty-nine weeks and was left alone in a Russian orphanage. We met him first at ten months of age. They gave us a medical history on the little fellow, that consisted of a brain bleed, numerous infections and viruses, and he was again fighting pneumonia as we peered into his little eyes. I saw a "light" in this little boy that was reassuring, I knew he was meant to be ours. He had so much love and life to share. He was the perfect child for us.

At fourteen months of age, he was given a clean bill of health and we brought him home. He was so tiny. We had no reason to believe that his speech and language delay was anything other than adapting to new people, a new environment, and a new language. This was exactly what we were told to expect in our adoption classes. Fortunately, our pediatrician had his check-list that he required to be completed for all internationally adopted children. On that list was the Hearing Test. Our son was “uncooperative” for the first hearing test, said the audiologist. Then a month later "he didn’t understand the tasks” for the second hearing test, said a different audiologist. That was when we were referred for an ABR (Auditory Brain Response, measures electrical activity of the brain from the hearing nerve by attaching small electrodes to the head). Just as we were all waiting for him to fall asleep, a bell sounded and our son turned toward the bell. Ahhh. He heard it and everyone saw him hear it. This test was now just a technicality. It was just something for the file, right? When the testing was complete, we received the unexpected... “It appears he has a profound hearing loss,” they told me when the test was complete. But, he could hear – we saw him respond to the sound of the bell! The audiologist began speaking a foreign language of alphabet soup, talking about AN/AD, OAEs, ABRs, cochlear microphonics, audiograms, speech discrimination. It was a whirlwind. I didn't understand what all that meant. Our precious baby might have Auditory Neuropathy they said, but we wouldn’t know for sure until we got another opinion at a center more familiar with Auditory Neuropathy/Auditory Dyssynchrony (AN/AD).

The time between appointments seemed like an eternity, but was only two months. One day we were convinced he could hear, the next day we were sure he couldn’t. How in the world would we figure this out when we were still getting accustomed to just being parents. Finally, the time came for the appointment at the center that was more experienced with this particular disorder. The tests were conclusive; he had AN/AD. We were right and wrong, he could hear – but he couldn’t understand what he was hearing -- it wasn't coming in as clear information or sounds...just noise. They fitted him with his hearing aids at 19 months old, but we knew that some AN/AD kids can successfully use hearing aids and some get no benefit from them at all. There was no way to know how well he could hear. Even with all the high tech testing, nobody could tell me what to expect.

After six months, there was no marked improvement in our son’s language development. Even though he was detecting sound at levels that should allow for speech development, he wasn’t even babbling. So, we began using Cued Speech and started down the path to learning more about cochlear implants and considering that as the best option for him. After thirteen months of strict hearing aid use and intense therapy, he only showed minimal progress in understanding language through audition alone. Our son was approved to get the first of his two cochlear implants. We immediately stopped using Cued Speech when his processor was activated, as we were advised to do.

The progress he made with his first cochlear implant was amazing. He worked very hard and went from having expressive language that was “unable to test” to having over eighty words in less than a year of implant use! He continued to make progress, but it was evident to everyone around him that there were times that he still had trouble hearing and listening. Though his progress was good, we all felt that he could be doing even better. After watching and documenting his behavior on the “good” and “bad” hearing days of his unimplanted ear, we determined that the AN/AD in the unimplanted ear must have been interfering. We went forward with the plan to get the other ear implanted.

We had moved to a new city and found a wonderful and highly respected surgeon. We began the process of attaining funding for the second implant. After months of work, the funding came through. Two and a half years after his first implant, we went into surgery to get his second implant. We were so impressed with how well he did with his first cochlear implant we chose the same product with this second surgery. When the operation was complete however, we received, yet again, the unexpected. Instead of receiving the device chosen by us, he had mistakenly been implanted with a different device. Again we worried. Will the two devices work in sync? Would they interfere with one another? How would that sound to him? Not only do the devices have different processing speeds and completely different technology, but think of all the equipment to lug around on vacations. We were assured that having two different brands would not be an issue. “Some people actually choose to have two different brands,” we were told.

We have been amazed. His progress with both of his cochlear implants has been tremendous. He loves both of them. He doesn’t have a preference, except that he wants to wear both. He hears equally well from each, and he is just over six months post-op since becoming bilateral. We were advised by our audiologist to go “cold-turkey” the second time around and he quickly adapted to the new input. His progress was so good that he was able to begin using both processors together after only one month of being activated. There are definitely perks about each brand, but as everyone had told us, both brands are great. His implants allow him to hear, to speak, and to be understood. I can only imagine how much easier it would have been for him to reach this point if he had been implanted years earlier. His hearing was never noted as an issue when we adopted him, but when the judge asked us if we were prepared to handle issues that arise from children being so premature, we said "Yes", fully confident we could handle the unexpected. We didn't have a clue - but we are so thankful that we didn't.

Written by a mom to an internationally adopted child
Edited by the CI Circle News Staff

Related posts of interest: Which Cochlear Implant Brand Should I Choose For My Child?

It's Not a Sprint, It's a Marathon

What is a "TOD"?

2008-11-03T13:26:00.020+01:00

When your child is first diagnosed with hearing loss, you are required to learn not only new vocabulary related to the subject of hearing loss, but you also soon discover that the list of acronyms is just as long. So, here, we are taking one such acronym and defining just what it is, and why it’s so important in your hearing impaired child’s life.

A TOD is a Teacher of the Deaf. He or she is a teacher and has either a Bachelor of Science or a Master's degree in Education of the Hearing Impaired. Audiology classes, language development classes and also classes on speech development are among the required curriculum of a Teacher of the Deaf. A Teacher of the Deaf, therefore, understands the unique needs involved in educating a hearing impaired child. Some TOD training programs emphasize sign language, while others emphasize spoken language. (For more information about training for this rewarding career, visit deafed.net )

A TOD can play many different roles in the education of a child with a hearing loss. In the United States, as soon as an infant is identified with hearing loss, the state education agency is notified, who then notifies the local early childhood intervention agency. In many towns or counties, the local deaf education program is then contacted so that services or visits to the family from a deaf educator can be implemented as soon as possible. In the very beginning, Teachers of the Deaf typically concentrate on educating parents in the choices available and also help parents by answering the many questions they have. The educational approach to be used (for example, an oral approach, total communication with speech and sign simultaneously, etc.) should be decided based on parental choice.

Many hearing impaired children do not learn language like a typical hearing child. They almost always need to be consciously taught vocabulary and the rules of grammar. At some point, children may begin to pick up language more naturally. In the case of a signing child, the family needs to be very involved and also sign everything they say. In the case of an oral child, the family should be talking all the time to foster spoken language development. In both cases, parents need to be narrating their children's lives! The TOD helps to train parents as to how they can best communicate with their child and also how to help their child to learn language.

Once a child reaches preschool age, depending on his or her needs and language level, the child may enter a special program for deaf children. That child's teacher will probably be a Teacher of the Deaf. This is referred to as a "self-contained" setting because the class contains only (or mostly) hearing impaired students. The TOD's job is to build language (and sometimes to support the student in mainstream classes, if the child spends part of the day in a regular classroom.) Typically, children who need more support and more intense help with language development are placed in a self-contained deaf education classroom for at least part of the day. If the child uses sign language as their primary mode of communication, the Teacher of the Deaf signs as she teaches and there is an interpreter to translate and sign during the mainstream classes. Parents who chose the oral route for their child may still send their children into a self-contained placement, such as an auditory-oral program or school. Again, intense language development would be the reason for children to go to a special program, and the teacher would focus on fostering spoken language development.

Once a child enters a mainstream setting, there are many roles a deaf educator can play. Many times the Teacher of the Deaf is there to make sure a fully-mainstreamed child is receiving the services they need to progress adequately in that mainstream setting and to be sure the classroom teacher fully understands the student's unique needs. The Teacher of the Deaf may be in charge of making sure additional equipment, such as an FM system, is available and working properly, and may be the "go-to" person if there is a problem with such equipment, if there is no educational audiologist available.

The TOD may consult with the teacher and school to make sure the acoustics of the room are appropriate. (Acoustics are how sound behaves in an enclosed space.) The TOD may notice if there are echoes or environmental noises that can be reduced for a better listening environment, etc. Often, a child's IEP (Individualized Education Program) specifies that the TOD consult regularly with the regular education classroom teacher to answer questions, discuss the child's progress and provide suggestions for the classroom teacher on ways to assist the student. Many TODs who work in this capacity in mainstream settings are "itinerant" meaning that they are not based at the child's school. Instead, they may be responsible for several students at different schools in the district, and therefore travel to visit those students and schools on a regular basis. If a school district does not have a TOD, they may contract with a neighboring district or even with a TOD in private practice.

Some hearing-impaired children in the mainstream receive services directly from the Teacher of the Deaf. The teacher may work with the students on "pre-teaching" concepts and vocabulary, which a mainstreamed child will encounter in class; "post-teaching", or reinforcing vocabulary or concepts learned in class; teaching the child to advocate for him- or herself, and/or teaching higher-level language, such as figures of speech or pragmatics (using language appropriately given the situation.) The amount of support (hours per week that the teacher meets with the student), the setting (inclusion meaning in the classroom, or "pulled out" for one-on-one time) are specified in a child's IEP. The nature of the work is also specified in the form of goals.

Now you can see why this role of TOD is so very important. This teacher can assume a role as "team manager," pulling everyone together in order to support and educate your hearing impaired child when they are in school. Making sure your hearing impaired child's needs are met while at school, can be invaluable.

Written by Mary S., Teacher of the Deaf and mom to a deaf child with cochlear implants

(Edited by CI Circle News staff)

It's NOT a Sprint...It's a Marathon!

2008-10-28T10:09:00.008+01:00

Ok, so you have made it through surgery, have your team in place to help you with your auditory goals, and it all went by in a complete blur!

Now you are ready to go! Give me goals, GIVE ME MORE GOALS! Let me get language in this child, not today, no yesterday, must get language in, must get language in, must get language in....

Yes, it is true that the major part of the cochlear implant process is the work you do with your child after the surgery: the learning to listen, the providing opportunities for new language development etc.

BUT you are not a machine that one can program and then let loose to do your thing. You are a man/woman, a husband/wife, and a parent, oftentimes, more things to more people than just your child with a hearing loss. Don't forget the many roles you have and the fact that you are not a machine!

As one very wise mother told me very early in our journey, "it's not a sprint, it's a marathon." You can't keep going at this frenetic pace all the time, you will inevitably burn yourself out and then what good are you to the family you love?

If on the occasional day you wake up and you feel like life just dropped a huge concrete block on you, roll with it. Don't beat yourself up over the fact you should be doing this or that listening activity with your child. Cut yourself some slack, head to the park with your beautiful child and just eat ice-cream together or enjoy whatever other favourites you might have. Time spent just being, is also very important.

You know that if you feel like you are having a bad day and try to ignore it to work on those goals, your child will sense your heart isn't it, and you will just be wasting your time. Let it go for a day, recharge and get back to work with gusto the next day.

Don't forget too that there are many ways to provide listening opportunities for your child that don't involve sitting your child down and working through specific things. There are many, many ways to tap into their interests and "play with them". Well, that is how they see it, meanwhile you are building in language without them even noticing - that might be the topic for another blog, another time : - )

We parents have a built in guilt switch and so we beat ourselves up every time we feel we are not doing enough. At the end of the day all you can do is your best and your best will differ at different times with the things that life throws at you from time to time. Work with your team, let them guide you with their professional opinions on how your child is doing, not based on an off the cuff comment from another parent who probably has no clue.

Be kind to yourself and know that your child is already so unbelievably blessed, he/she has parents who care enough to educate themselves as much as they can, that is why you are here reading this. Your child already has the best advantage of all - YOU.

Posted by Naomi

Which Cochlear Implant Brand Should I Choose For My Child?

2008-10-27T19:32:00.022+01:00

Decisions, decisions... One of a parent's most agonizing decisions is whether or not to get a cochlear implant for their deaf child. No sooner does one decide to go ahead with a CI than another confusing choice appears: which brand of implant to choose? It can be overwhelming. The differences between them seem to require a degree in biomedical engineering to understand. To make matters worse, your child's audiologist at the CI center reassures you that all brands work great and that the choice is entirely up to you and should be based on what will "work best for your family." But how is one supposed to know what will "work best for our family?" What if it doesn't work at all? Not working at all seems unlikely to those of us whose children already have cochlear implants, but, this can be a very real concern for someone making what seems like such a weighty decision on behalf of a child, the love of their life.So how does one choose? The audiologist's reassurance is worth noting. All brands do work to a high degree of success, and if they didn't, the implant center could not, in good conscience, offer them! Success depends far more -- even entirely -- on the follow-up care and intervention that a child gets rather than the brand chosen. A child's cochlear implant should be mapped (programmed) regularly. The child should be wearing the implant nearly all waking hours, and parents should be getting regular instruction on how to encourage listening and auditory development in their child. A young brain is an amazing thing, and if all of these criteria are met, the chances of success are very high.

"This is not helping," you say. "I need some guidance here. Help me decide!" OK. First, it's worth figuring out which brands your CI center, and especially audiologist, have experience with. A child, especially a very young one, will not be able to say, at first, what sounds good, clear, etc., so you will be relying on the audiologist's intuition and expertise in making the implant produce the best possible quality of sound for your child. Ask what implants are common among the clinic's patients. Second, look at the devices, both internal and external. Try the sound processors on your child, if he or she will let you, to get an idea of what they might look like. (My son, who has had cochlear implants for 8 years sometimes likes to try the other brands' demo processors on "just for fun" when he's in for a mapping.)

If your child is young, don't worry about whether or not he or she will like the look of the processor when he or she is a teenager. Chances are there will be newer, better-sounding processors with more features available by then -- several times over! Each CI maker seems to release a new sound processor every 4 or 5 years. Also think about which one feels most comfortable and intuitive to you, the parent, since you will be the one manipulating it while your child is young.

If you are still undecided, ask other parents what they like about their choice -- what are their favorite features about their child's CI? Some specific questions include:

* What are my options in how the implant may be worn for a baby or young child?
* How long do batteries usually last?
* What types of batteries do the processors use?
* Is the processor compatible with FM systems and how?

A word of caution here: just like there are "dog people" and "cat people" or "PC people" and "Mac people", there are also "AB people," "Cochlear people," and "Med-El people." There tends to be a great deal of brand loyalty with cochlear implants among adult CI users as well as with parents. And unlike a desktop computer, which can be replaced, once surgery is complete, there is no changing your mind. Naturally, any suggestion by another parent that you could have made a better choice hurts. This is your child, after all, and using the all the information you had and what felt right, you made the best decision you could on behalf of a person who means the world to you. Those of us who are tempted to promote our chosen brand at the expense of another ought to ask ourselves what is our true motivation? Is it out of a sense of insecurity that we want to recruit others to our choice? To reassure ourselves that we made the right one by seeing others make it too? When giving advice, before hitting the "Send" button, put yourself in the shoes of someone who recently made a different choice. Is there anything in what you've written that might offend or hurt such a person, even subtly? If it feels like you might be crossing the line, you probably are. It's also worth keeping in mind that our choice may have been influenced by what was available at the time point that the decision was made. A particular manufacturer may have had the newest device on the market. The options facing parents may be different by now or in another year or two -- things change fast in the CI world, and that's part of the excitement!

In the interest of full disclosure, my son has the Cochlear brand, and I volunteer for the company as a Cochlear Awareness Network Volunteer. I do so primarily because still, not a day goes by that I am not in awe of what cochlear implants have done for my child. I would volunteer for all three brands if I could, though I don't think the other makers would necessarily want me as an advocate because I am not familiar with their products! Last year I was delighted to be part of an foundation that, together with Advanced Bionics, awarded a cochlear implant -- the gift of hearing -- to a young child whose family's insurance would not pay for the surgery.

Perhaps another question to ask parents who have made the choice and whose kids are happily learning to listen, or are accomplished listeners, is how much time do they spend wondering if they made the right choice of brands? Chances are they don't think about it much after it's a done deal, but are absolutely thrilled with what a cochlear implant does for their child.

You can't go wrong!

(For a related story with an implant brand twist, read: The Unexpected - An Adoption Tale)

Lydia is the parent of an almost-12-year-old bilateral CI user who got his first implant at age 4 and second at age 8.

If you would like more guidance on choosing a cochlear implant for your child, join the CI Circle Discussion Group. You can search the archive for past discussions on brand choice or ask anew.

Paving the Way...

2008-10-23T13:16:00.006+02:00

Rachel was born in 1987, before universal newborn hearing screening and before the internet. Her deafness was diagnosed at age two months. We left the audiologist with a diagnosis of a severe-to-profound hearing loss, having no clue what that meant or where to turn to for information. We went through a year of trial and error trying to find hearing aids and a program that worked for Rachel, that would meet our goal for her of having her become a hearing, speaking, fully participating member of the hearing world. When she was 16 months old, we spent a week at the Helen Beebe Center immersion program, became believers in the Auditory-Verbal Approach, and switched to an Auditory-Verbal therapist in Massachusetts, where we lived at the time.

Unfortunately, between ages 10 and 18 months, Rachel lost all of her residual hearing. Thus, although we were enthusiastic about the Auditory-Verbal Approach, it was not going to be possible for Rachel without any hearing. We were fortunate that our therapist agreed to keep working with us, applying the techniques of A-V to a visual oral approach. Rachel ended up being a whiz at lipreading and quickly gained a receptive vocabulary of 100 words. However, because she had no hearing, she did not understand that we spoke with our voices, and so she only mouthed words.

When Rachel was 2 years 3 months old, our A-V therapist (AVT) was speaking with an AVT in Canada, who mentioned that she, too, had a student who was totally deaf, and the family had taken her to New York University for a cochlear implant. This was in August 1989. We called immediately, took Rachel to NYU for tests in October, and the NYU team scheduled her for CI surgery eight weeks later.

We took a leap of faith deciding to implant Rachel. The implant was not yet FDA approved in children but was, instead, in phase III FDA clinical trials for children ages two and older. There was not another child in all of New England with a CI, and so we had no one at home to speak to. When we were in NY, we met a four-year-old girl with a CI who was speaking beautifully, but she had lost her hearing to meningitis at age two, and so, unlike Rachel, her brain had had access to sound before she lost her hearing. We had no idea what to expect, and so few children had been implanted at that point that the NYU team couldn’t tell us any more than that she’d be able to hear environmental sounds.

Rachel received her CI on December 21, 1989. She spent four nights in the hospital, including the night before surgery. This was standard then. A month later, we returned to NY for three days for her initial stimulation. We were thrilled when she responded to sound during the mappings, but we had no understanding at all of what programming her CI involved.

When we were home again, I had so many questions but no one to talk to other than the NYU CI team, and fortunately for me, they were a very small group then, and they readily answered all of my phone calls.

I think back now on all of the questions I had in those early years. Why was Rachel’s head control poor? Did it mean that she had CP? What was the CI surgery like? Did I need to bring anything to the hospital with me? What was the audiologist looking for during the mapping? What was a mapping exactly? What parameters was the audiologist fiddling with? What was the significance of each of these settings? How tight should the magnet be? What response should I expect from Rachel once we got home?

I can only imagine how much more confident and at ease we would have been along the way had I had a resource available like the Cicircle. I would have had parents to go to for information and to calm my worries and fears. The Cicircle listserv itself has served as a tremendous resource for parents over the past 10+ years, but the addition of the affiliated websites makes it even more so. Who better to understand the questions and concerns that parents have than other parents? Who else can anxious parents turn to in the middle of the night and receive answers within an hour when their child has swelling at home after surgery or when the device seems to feel differently than before?

Parents of children born deaf today are so fortunate to live in the information age with information so readily available. To have it all in one place on http://www.cicircle.org/ is even better. Children have already received cochlear implants at younger ages because their parents learned about early implantation from other Cicircle parents. Similarly, it is Cicircle parents who were among the first to understand the benefits of bilateral implants and to pass the word on to other parents. By parents for parents, and, as a result, for better opportunities for our children - This is what the Cicircle has accomplished and what the websites will help accomplish even more.

As a postscript, I have to end this by telling about Rachel today, as well as about her younger sister Jessica, who was also born deaf. Despite having some professionals tell us early on that Rachel would never learn to speak well, she not only learned to speak English well, but she is also fluent in French, won her high school’s foreign language award as a junior, and achieved the highest possible level of “superior” in a statewide French competition for excellence in spoken French. She also won her school’s Faculty Cup award at graduation, an award agreed upon by the entire faculty for excellence in academics, citizenship and personal growth. She is currently a junior in college majoring in travel photojournalism, is an avid traveler who has been to France six times, as well as to Italy and Israel, and soon will be heading off to Australia and New Zealand, all on her own, navigating her way independently.
(Note: Rachel is speaking French in this video)
Jessica is eight years younger than Rachel. She had the advantage of being born to parents who had been there done that by the time she came along. We were living in Atlanta by the time she was born, but we traveled back to NYU in order to have her implanted at age 15 months, nine months younger than the FDA guidelines of age two at the time and 16 months younger than Rachel was when she received her CI. Both girls were then bilaterally implanted in 2004, something we quickly learned the advantage of thanks to other Cicircle parents.

Posted by Melissa

The Official Blog of the Pediatric Cochlear Implant Circle

2008-10-15T17:18:00.012+02:00

Welcome to the official news blog for CI Circle – The International Pediatric Cochlear Implant network for parents.

In 1998 Naomi Higgs (Australia) and Karen Biernat (USA) co-founded CI Circle. CI Circle arose from the need for parents to gain accurate and non-judgmental information about paediatric cochlear implants. The original group started with just 8 members and has now grown to 1700 members internationally.

In the life of each child, it is his/her parents who are there for the long haul – differing professionals may come in and out of their child’s lives but parents are the one consistent that is there all the time. As a result, parents become the keepers of a great depth of knowledge, some of it acquired from reading or attending seminars, and much of it based on direct real life experience. The information generated by this group has provided enormous support to both parents and professionals alike. If you would like to join the discussion forum of this group, joining information can be found here. For a collection of useful resources and to read the blogs of CI Circle parents, visit our website at http://www.cicircle.org/

Posted by Naomi