BC Hands & Voices

What Parents Need to Know About CI “Soft Failure”

Posted on September 30, 2010 by Chris Mallinson

by Leeanne Seaver, Hands & Voices ©2010, with contributions from experts at Advanced Bionics, Cochlear Americas, and the University of Colorado Hospital. ©2010 Hands & Voices Communicator, Summer 2010, Reprinted with Permission

The stories we hear the most are inspiring: the deaf girl who won the school spelling bee thanks, in part, to her cochlear implant (CI) that enabled her to participate for the first time in this thoroughly “hearing” event; the Princeton-educated attorney who loves both her CI-friendly iPod and her Deaf cultural lifestyle. There’s no question that cochlear implant technology has changed the landscape of the deaf world and opened up new possibilities for many, many users. But not for all users, all the time. When things aren’t going well, parents often worry that their child is the problem—maybe s/he is the kind of kid the audiologist was referring to when she said “not every kid will be successful with a cochlear implant.” How long does the frustration and anxiety over little-to-no progress go on before it’s determined whether the CI device itself is the problem? What are the red-flags for device failure?

Whether you’re the parent of a child with a cochlear implant or considering this technology for your son or daughter, you need to consider the fallibility of this technology. The good news: in general, it’s rare. The bad news: a CI malfunction known as “soft failure” is difficult to identify, and it can be a long, frustrating process to discover it. If you’ve already lost a lot of time before even beginning to explore this possibility, your kid could be at real risk for language deficits and related problems. Arming yourself with knowledge will help you make informed choices and take prompt action if you’re ever worried about this issue for your child. Hands & Voices (H&V) has invited two major cochlear implant manufacturers and an independent audiologist who works at a large, metropolitan university hospital with many CI patients to share their insights and expertise to help get you started.

H&V: What is “soft failure”? What causes it? How often does it occur? Is there such a thing as “hard failure”?

SHANNON BURNS, AuD, CCC-A: A cochlear implant soft failure is an uncommon occurrence in which a device malfunction is suspected but cannot be proven using currently available methods of assessment. A cochlear implant hard failure may be characterized as more of a sudden loss of function, such as no communication between the internal and external devices. This may be proven with an assessment (integrity test) by the manufacturer of the function/status of the internal device. The Consensus Statement from 10th Symposium on Cochlear Implantation in Children assessed that soft failure:

Is an uncommon occurrence
Is a working diagnosis. (Only confirmed by removal, examination and identification of failure mode)
Diagnosis begins with awareness of common presentations. (Declining performance, aversive symptoms or intermittent function)
Diagnosis can only be made with complete otological examination, CT scan, expert re- programming, exchange of all external hardware, and integrity testing by the manufacturer.

COCHLEAR AMERICAS: A “soft failure” is a term used by the cochlear implant industry to describe a situation where a patient’s hearing performance has noticeably decreased but the implant integrity testing shows that the implant is functioning as normal. In other words, the implant testing does not show a problem with the internal device, but the patient is not hearing as well as they used to.

There is a wide range of patient clinical situations where a “soft failure” occurs. Therefore we are not able to draw any specific conclusions about what causes “soft failures”. Indeed, quite often a change in a patient’s hearing performance will not be device related, but instead will be related to the patient’s general health or medication.

“Soft failures” do occur, and in one recent study it was reported that 2% of the implant recipients had their implant replaced due to a soft failure (Data was collected from two major cochlear implant centers in the US, and devices were represented from each manufacturer – Cullen et al. 2008). This report does show that the Nucleus Cochlear Implants had a significantly lower incidence of soft failures than the other manufacturers.

A “hard failure” a.k.a “a failed device” is much easier to identify. A hard failure will be identified by a combination of a noticeable drop in a patient’s hearing performance, and the implant integrity testing showing the device as malfunctioning (or not operating as designed).

ADVANCED BIONICS: Cochlear implant “soft failure” is an uncommon occurrence in which a device malfunction is suspected but cannot be confirmed using currently available tools to test the internal device once implanted (often referred to as “integrity testing”). A soft failure may be suspected when there is a lack of or decline in hearing performance, perceptions such as a popping sound or intermittent hearing with the cochlear implant. Re-implantation of another device with subsequent alleviation of symptoms strongly supports the diagnosis of a soft failure but cannot conclusively confirm a device malfunction. A suspected soft failure is confirmed when the device is explanted and a failure mode is identified upon further evaluation and inspection.

A “hard” failure is typically defined when a device malfunction is suspected and indeed confirmed with the available assessment tools (the “integrity” testing).

Testing of the device can be conducted either in-situ (e.g. integrity testing in the ear) or upon return of the explanted device to the manufacturer. Once the device is explanted and returned to the manufacturer, a wide range of tests can be performed to assess the functionality of the device. If none of these tests fail, but the patient is performing better with the new device than with the explanted, then the conclusion is that the explanted device had a “soft failure”. Because the term “soft failure” has come to have a variety of meanings, Advanced Bionics does not actually use this term. Instead, Advanced Bionics uses the following classification scheme based on the testing that was performed on the device:

Confirmed Device Failure – The explanted device failed a test when it was returned to Advanced Bionics for failure analysis.
Clinical Failure of Unknown Origin – The device failed an integrity test when it was tested in-situ; however it has yet to fail a test upon return to the manufacturer. In some cases these devices have not yet been explanted and returned to Advanced Bionics.
Clinically Device Tested OK – Other Reason for Explant – These are cases where the device did not fail any clinical integrity test however the device was explanted and upon return to Advanced Bionics, the device passed all tests. “Soft Failures” would fall into this category. Included in this category is the case where 1.) a patient perceived there was an issue with the device and 2.) integrity testing did not indicate a failure and 3.) upon explant the device was returned and passed all testing and 4.) the patient performed better with the new device than the explanted. The percentage of explanted devices that fall into this category is quite small (less than 2%).
Medical Explant – Explants for non-device related reasons. These include infections, extrusions, electrode migrations, etc..

H&V: How can families recognize the signs or symptoms of a soft failure?

SHANNON BURNS, AuD, CCC-A: The suspicion of a soft failure begins with the awareness of common presentations including declining performance (decrease in speech perception scores or functional thresholds) and/or aversive symptoms (non-auditory sensations) such as popping or shocking sensation or intermittent function. The working diagnosis of a soft failure is arrived at after painstaking evaluations by the cochlear implant team, manufacturer and patient. A soft failure can only be confirmed by removal, examination of the suspect device, and identification of a failure mechanism.

COCHLEAR AMERICAS: A family would not necessarily recognize the signs or symptoms of a soft failure (as defined). Rather they should focus on the recipient’s hearing. If they notice significant changes in hearing performance they should contact the family member’s audiologist for a consultation. The audiologist would then determine whether programming changes are appropriate or if an integrity test should be performed on the internal device.

ADVANCED BIONICS: For older children who can tell parents about what they are (or are not) hearing, parents should watch for any changes in their child’s ability to hear, any reports of aversive sounds such as pops or changes in sound quality including static or buzzing, and any reports of discomfort, pain or tingling around the head or face.

For young children who cannot report what they hear, parents should watch for unwillingness to wear the device, a change in behaviors (more aggressive, frustrated), a change in attentiveness, and/or a regression or lack of expected development of communication skills.

H&V: What should a family do if they suspect there is a soft failure with their child’s CI?

SHANNON BURNS, AuD, CCC-A: Generally speaking, if there is any significant change in hearing ability, sound quality, or the presence of non-auditory stimulation the family should contact their cochlear implant audiologist immediately for further troubleshooting and assessment. The clinical specialist from the cochlear implant manufacturer may be called upon to perform an integrity test of the internal device, although this test is often “within normal limits” in case of soft failures.

They should have an excellent team of professionals that must including audiologist, speech therapist, physician, parents and educators who are closely connected and all collecting data on progress and benefit over time. This team together discusses progress and can explore the possibility of a “soft” failure as necessary. If these things aren’t in place from the time of implantation (or before) a soft failure may not be identified in a timely manner.

COCHLEAR AMERICAS: They should contact the child’s audiologist for an appointment.

ADVANCED BIONICS: If families note any of the symptoms of soft failure, or if they have any concerns about their child’s hearing performance for that matter, they should check all the external equipment to be certain it is functioning properly and immediately contact the cochlear implant center.

H&V: Are some kids at greater risk for soft failure?

SHANNON BURNS, AuD, CCC-A: No. However, kids who do not have a good team in place can have two problems. First they could have internal device issues or simply processor programming issues that could be overlooked because no one is actively managing/monitoring their hearing. Second, they could be thought to have a “soft” failure when the reason for lack of progress is actually lack of appropriate intervention and follow through.

COCHLEAR AMERICAS: There is no clinical evidence that some kids have a greater risk for soft failure than others. There seems to be more importance around which cochlear implant manufacturer produced the device (as presented in the paper by Cullen et al).

ADVANCED BIONICS: In 2006, Advanced Bionics identified internal moisture problems in a significant number of implants manufactured with a component (called a feedthrough) built by one supplier (“Supplier B”) whereas no such problems occurred in components from another supplier (“Supplier A”). Accordingly, recipients of suspected devices and their cochlear implant teams were notified to monitor for any suspected changes in performance or sound quality. Since that time, AB has manufactured HiRes 90K devices with feedthroughs provided only by Supplier A which demonstrated very high reliability (99.6% 2 year CSR).

While the internal reliability of cochlear implants today is very high, over 99%, parents of children with cochlear implants regardless of type should monitor their child’s performance and discuss any concerns with their cochlear implant surgeon and audiologist.

H&V: What is the recommended protocol when there is a soft failure?

SHANNON BURNS, AuD, CCC-A: Otological examination, CT scan, close monitoring of performance over time, expert re-programming and hearing testing, exchange of all external hardware, and integrity testing by the manufacturer.

COCHLEAR AMERICAS: Any change in hearing performance must be managed by the patient’s audiologist based on the clinical symptoms. This may range from monitoring the patient to requesting an integrity test by the manufacturer. Hearing performance data and other clinical data with the cochlear implant should be continuously monitored, so that if a concern arises, there is baseline data to compare to. These measures, along with information about any medical concerns, can help the implant team and manufacturer make the best recommendation regarding whether or not to replace the device.

ADVANCED BIONICS: The appropriate management option for a child with a suspected soft failure is determined by the cochlear implant team (CI surgeon and audiologist and therapists) and the parents/ caregivers with input from other professionals actively involved with the implant user’s health care. Typically, the cochlear implant team first rules out the possibility of external equipment malfunction and may make programming adjustments and then request a comprehensive integrity test from the manufacturer. A consensus statement from a panel of cochlear implant experts outlined management options as follows: 1) prolonged observation if the device continues to provide substantial benefit and symptoms are tolerable; 2) removal and re-implantation; or 3) in rare cases, implantation of the opposite ear (if not also implanted) when hearing performance is the main concern.

H&V: If a child has to be re-implanted because of soft failure, does his/her family have to pay for the second surgery?

SHANNON BURNS, AuD, CCC-A: Generally the cochlear implant manufacturers support the decision of the surgeon and audiologist to explant/remove a device and will cover expenses not covered by insurance if the device is under warranty. The warranty for the internal devices is 10 years.

COCHLEAR AMERICAS: This does depend on whether the implant was still under warranty, and whether or not it was determined to be a failed device. It is unusual for a family to have to pay for revision surgery

ADVANCED BIONICS: Cochlear implants have a warranty and the center and family should work with the manufacturer on specific cases. Specifically, for Advanced Bionics devices, we make no distinction between “soft” and “hard” failures; rather, we follow the recommendations of the cochlear implant team and cases of suspected soft failure leading to explantation are therefore covered under the terms of the warranty.

H&V: If there has been a soft failure, are there any risks to the child’s brain or internal processes?

SHANNON BURNS, AuD, CCC-A: Generally, no.

COCHLEAR AMERICAS: A soft failure does not add any risks to the child’s brain or internal processes. The risk of surgery to replace the implant is not significantly riskier than the child’s first cochlear implant surgery.

ADVANCED BIONICS: We are aware of no studies or cases showing such risk.

H&V: How long does the CI’s internal device usually last? Should families plan on the need to re-implant their child due to the anticipated “lifespan” of the internal device?

SHANNON BURNS, AuD, CCC-A: The implant is designed to last a life time, but because they have not been in existence for a “life time”, there is no way to know how long they will really last. Also, technology changes/improvements lead people to electively replace internal devices when the benefits are substantial. For instance, some people who received single channel implants from the late 70s or early 80s are having theirs replaced. I would expect that most pediatric patients will have their implant replaced at least once in their life time.

COCHLEAR AMERICAS: Nucleus devices are designed for a lifetime. Cochlear’s implant reliability is the best in the industry and we do not think families should be required to plan on re-implanting their child every few years. For example, for our earliest generation products after 23 years there is a 93% cumulative survival.

ADVANCED BIONICS: The expectation for any cochlear implant is that it should have a minimal chance of failing within a 10 year period. This not to say that there is a zero chance of failing within 10 years, but rather that the probability is acceptably low (well less than 5%). Therefore, families should not have to plan on a re-implantation within the 10 year period. In fact, the reliability of Advanced Bionics current device is such that families have a good chance of not seeing a failure at the 15 or even 20 year mark.

Even so, our life spans are now 70 and 80 years, so the expectation should be that children implanted at two years old will have several cochlear implants over their lifetime. AB builds our implants with the technical capacity or headroom to be upgraded through software programming that requires no surgery. This gives children being implanted today as much access as possible to the breakthroughs of tomorrow with the hope that the device will function much beyond its warranty period. Nevertheless, while the advances of decades to come cannot be predicted today, it may be that some advances are so great they may warrant re-implantation to upgrade hearing performance.

H&V: What else should families know about this topic?

SHANNON BURNS, AuD, CCC-A: It may be important for families to be aware of the potential for electrostatic discharge (ESD) to compromise internal device function.

COCHLEAR AMERICAS: Soft failures are rare. Small fluctuations in a child’s hearing performance are normal. Significant changes in hearing performance may not be normal. Keep good records of your child’s hearing performance, pay attention to significant changes and see your child’s audiologist at yearly intervals or more frequently if required by the condition of the patient.

ADVANCED BIONICS: We are committed to making reliability of our product- both internal and external components- our number one goal. Our patients remain foremost as we demonstrate the importance of quality in all of our daily activities. We continue to invest substantial resources to improve the quality in all that we do.

H&V: What if everything seems to be going ok but no you’re worried?

H&V: Chances are everything is ok! Just be sure your cochlear implant audiologist does a “hearing performance test” with the implant to establish a baseline from which you can measure progress, lack of progress or digression. This is extremely important for every CI user so you know when something is going wrong, and can promptly identify a soft failure in the unlikely event that your child may have one.

Whether it’s a cochlear implant supporting listening and spoken English, or Cued Speech, S.E.E., or American Sign Language—whatever mode or method you’re using, make sure your child is developing language; expect him or her to make progress and achieve fluency that’s age-appropriate. Do all you can and should to ensure that you have the knowledge you need to help your child reach his/her fullest potential.

Posted in Advocacy, Newsletter - Sept 2010, Technology | Tagged CI | 9 Comments

Apple’s Touch Screens Can Bridge a Gap

Posted on August 23, 2010 by Chris Mallinson

Scott using an iPhone

When my son Scott first saw an iPhone, he was four years old. He’s a curious little guy, and if he sees something with a screen on it, his curiosity takes over. He took the iPhone in his hand, and started to use it. He did not play with it or examine it. He used it. It had taken him a few seconds to realize that he could drag and touch items on the screen. Within a minute he had found the photo application and was flipping through family pictures like he had been doing it for years. Apple’s intuitive design had almost completely removed the learning curve.

When you first learn to use a computer, you need to learn a new way to interact. Most of us didn’t take too long to learn how to use a mouse to manipulate a cursor on the screen, or learn how to use a keyboard to command a computer to perform an action. What we don’t realize is that our brain really needed to work hard to learn how to do these things – rewiring itself to interact using mouse and a keyboard. We accept this learning curve because in the long run, it gives us an efficient way of integrating technology in our every-day lives. The ubiquitous nature of the keyboard and mouse is great for the majority, but for those who have difficulty seeing, hearing, moving, or with learning itself, it can be a different story.

Touch screen interfaces rely on our inherent instinct to touch the things with which we want to interact. They require less motor control because the movements are not scaled down to match the size of a mouse pad, and they are not unrelated to the task, like those used to type commands on a keyboard. Both of these things reduce the time required to learn a task, and increase the confidence of the user.

Companies have been making computers that are modified or designed specifically for users with disabilities for many years, but given the small production volume, these units have been extremely expensive, rarely near the cutting edge of technology and without a wide range of software choices. All that changed this year when Apple introduced the iPad – a handheld tablet-style computer with a touch-screen interface. The device takes the touch interface familiar to iPhone users and scales it up to a size more useful for standard computing tasks. In making a computer that is amazingly easy to use, Apple has opened the door for people with disabilities to use the same computer as the rest of their peers. This alone is an advantage, especially for kids, who want little more that to fit in with their friends.

I felt a sense of normalcy and acceptance. Using an iPad, which could become as commonplace as the Blackberry and iPhone, is not yet another thing that makes me different. I wasn’t using a strange, unfamiliar device to communicate…

– Glenda Watson Hyatt (a writer with cerebral palsy)

The iPad costs around $500 for a base model. Compared with a cost of $5,000 – $10,000 typical of a touch screen laptop used by many kids with special communication or mobility requirements, it is easy to see why parents of kids with disabilities and the agencies that assist them are snapping up iPads as fast as they can. In the first few months of production, software developers have come up with hundreds of different applications meant to assist people with special needs, many of them at very low costs. There are signing and captioning applications for the deaf, high contrast and screen reading programs for those with vision loss, communication aides for people with physical disabilities, and organizational programs that are doing wonders for kids with autism. There are even devices on the market designed for attaching iPads to wheelchairs.

Let’s not kid ourselves. Tech companies don’t often design their products specifically to be accessible to people with disabilities. They are trying to bridge the digital divide by making their products attractive to a greater amount of people, many of whom would not normally be interested in high tech devices. The market for high tech products has traditionally been young and prosperous individuals, but as that market becomes saturated, companies will begin to target occasional and first time tech users. To do this, companies are making their products easier to use and more accessible. Ironically, it is the power users – the early adopters – who will appreciate these innovations just as much, since making things easier to use makes the whole experience better for everyone, especially those who use the devices the most

Scott tries out his new iPad after cochlear implant surgery

When Scott awoke from his second cochlear implant surgery, and had had a bit of time to figure out where he was, we handed him an iPad. He had been a brave little guy, and we had wanted to get him one since the product was announced. He was so happy he could watch a movie in his hospital bed, and his favourite spelling games he knew from the iPhone were so much easier to see on the bigger screen. His iPad is a valuable tool to help him learn at school, and a great comfort at the end of a busy day to curl up in a chair and look at family photos.

Posted in Newsletter - Sept 2010, Technology | Comments Off

Summer Fun!

Posted on July 25, 2010 by Teresa Kazemir

We BC Hands & Voices folk recognize that parents are often looking for things to do with their children over the summer and thought it would be fun for all us parents who have children with hearing loss to get together to play and to network. Some of the BC Hands & Voices board members plan to gather and we invite you to join us, if you`re able. We`ll be meeting at Bear Creek Park, in Surrey (click for google map), on Tuesday, August the 17^th, from 11:00am – 2:00pm. You can find us at the picnic table area off 88^th avenue, close to King George Hwy (see attached map). The area has a water park, a train ride and of course, a playground. Since we`ll be there over the lunch hour, bring a picnic lunch for yourself so you don`t get hungry.

Hope to see you there!

Note: if it’s a rainy day, we will not meet. For more information, please call 604 552-2254 or email info@bchandsandvoices.com.

Posted in Events | Comments Off

B.C. Hands & Voices Coffee Night!

Posted on May 17, 2010 by Teresa Kazemir

Thursday, May 27th, 7:00
Starbucks, 104-12571 Bridgeport Road, Richmond (at Sweden Way, across the street from Ikea). Take the Bridgeport Road exit from the Knight Street Bridge. It`s is also easily accessible from Hwy 99 and 91.

Come join us – this is a great, informal opportunity to get together and chat with other parents of young children with hearing loss. For more info, call 604 552-2254.

View Larger Map

Posted in Events, Families to Families | Comments Off

Bilateral BAHAs – Is Bilateral Better?

Posted on April 29, 2010 by Teresa Kazemir

After using a Bone Anchored Hearing Aid (BAHA) for 6 years, our 14 year old son Jesse recently received his second BAHA – he “went bilateral.” He was born with bilateral atresia (no ear canals or openings on either side) and has a bilateral severe to moderate conductive hearing loss.

In spite of having bilateral atresia and bilateral hearing loss, Jesse wore just one hearing aid for the first 14 years of his life, and for the most part it worked out well. He had a bone conduction hearing aid until he was 8, when he was fitted with his first BAHA (after two surgeries to implant the titanium screw and “abutment”). Jesse has always used an FM system in school, and has done very well. Listening in noise was (and is) challenging, but Jesse has always seemed to hear better than we expected him to, given his hearing loss. As long as we got his attention first, he seemed to be able to hear us over the background noise, and when that didn’t work, we used a little sign language as a back-up.

While Jesse did well, we always wondered if life would be easier for him if he had bilateral hearing aids. For one thing, having a single hearing aid is a real pain when it breaks. He would either have to use his old bone conduction aid, which he no longer liked after getting the BAHA, or we would have to fit in an urgent trip to the audiologist to get a loaner. Secondly, Jesse had practically no ability to localize where a sound was coming from. When he was little, we were always concerned for him around traffic and in parking lots. And then he always had a “good side” and a “bad side,” and I have never been good about remembering to sit on the good side of him – and, to be honest, I always had to concentrate to remember which side his BAHA was even on! Lastly, and perhaps most importantly to Jesse, were issues related to music. Jesse is a great fiddler, and plays in a Celtic Ensemble with twenty other teens. With one hearing aid, which is situated very close to his violin, he often has difficulty hearing the guitar or the other fiddlers over the sound of his own violin. We wondered if having a hearing aid (and thus microphone) on the opposite side would allow him to hear his fellow musicians more easily.

So, we sat down with Jesse to see what he thought about the whole idea. He was not too keen on the idea of another surgery (he has also had two other unrelated surgeries) and in general didn’t really want to get it. However, we talked with a few people, including his audiologist, who pointed out that it was hard for Jesse to know what he was saying “no” to. She used the analogy of pizza – if you had never tried pizza, you wouldn’t even know how much you love it.

At one point Jesse said to us that it didn’t really feel like we were giving him a choice. We told him that if he strongly opposed it, he definitely did not have to get it. But if he was just put off by the idea of the surgery (which is really not that major, but does mean going under anaesthetic and wearing a very itchy head bandage for a couple of days), then we would rather he not make his decision based solely on that. We said we would push him in that direction because we thought it would be something that would be a benefit for him, but would never make him have the surgery against his will. In the end, he decided that he would get the second BAHA.

The surgery went well, and he was able to have it done in one stage rather than two this time, since he was older and the bone was thicker. While he was healing, we learned that the new BP100 was being released, which is the latest version of the BAHA from Cochlear. There were some delays, so we had to wait awhile, but he finally got his hearing aid in November, five months after his surgery.

We encouraged Jesse to start a blog to document his experience, both with “going bilateral” and with the new BP100. You can read about his early impressions (http://bahadude.wordpress.com/) – he makes some interesting observations.

At this point Jesse has been wearing his two BAHAs for 7 weeks (his old BAHA compact on one side and the new BP100 on the other). Between school work and music, he is a busy kid, so I thought the best way to get his input for this article was to interview him.

TK: “What do you think of having bilateral BAHAs so far? Do you notice much difference from when you just wear the one BAHA?”

JK: I like having two BAHAs now. At first it was a little bit weird, and I had to get used to it, but it’s normal now, and sometimes I don’t notice that I even have the new one on. I find that most sounds seem louder now than when I only had one hearing aid. Sometimes this helps, but sometimes in places where there’s a lot of background noise, it makes it harder to listen to the person speaking just because everything seems louder. I am getting used to it, though.

One advantage I have found is when I am walking with my friends. I don’t have to position myself so that the side with my hearing aid is towards them anymore.

Also my mom says that I don’t say “what” or “pardon” as much when I’m wearing both hearing aids.

TK: Did it take long to get used to wearing two hearing aids?

JK: It took me about a month and a half to fully get used to it. At first I had to take breaks from the new hearing aid because it was really different and really weird sounding, sort of overwhelming. Gradually I started using it more and more (over a period of about 2 weeks), and then I started using it full time. Just about a week ago is when I noticed that it sounds normal now.

TK: How do you find the sound quality of your new BP100 compared to the older Compact BAHA?

JK: The BP100 is a lot clearer than the Compact. Another thing I noticed is when I use the background noise setting (directional microphone) on my new hearing aid, I find it a lot easier to hear in noisy situations.

TK: You were hoping that having two hearing aids would help you when playing in the fiddle ensemble. How has that been?

JK: I was hoping that having two hearing aids would help me hear other musicians when I am playing in my fiddle group. Unfortunately, there was something wrong with my BP100, and I got feedback whenever there was a loud noise, like my violin, so I couldn’t wear it at rehearsal. We went back to the audiologist today and got a new one, but it doesn’t seem to work any better than the first one. Hopefully they will eventually come out with new software and be able to fix it.

TK: Have you noticed any difference when you are talking on the phone?

JK: Yes I have noticed one major difference; in noisy situations, it is way harder to hear because the background noise is twice as loud (coming through two hearing aids) but the person speaking on the other end of the phone is the same volume (only coming through one hearing aid). I have decided that from now on whenever I find myself in this situation I will turn off the hearing aid I’m not using for the phone.

TK: Has your ability to localize sounds improved at all?

JK: I can localize a little bit now – not easily, but I can a little bit. We’ve tried it a couple of times – I close my eyes and somebody talks to me and I try to localize the sound. Mostly I can find the general direction of the source of the sound, but I have troubles localizing behind me. My ability to localize sound has improved slightly since the first time we tried it – my audiologist recommended we practice localizing to see if I can improve my skills.

TK: If you had to decide all over again knowing what you know now, would you decide to get bilateral BAHAs?

JK: Yes. The only part that discouraged me in the beginning was the possibility that the surgery could go wrong and the knowledge that I would have to wear that really, really itchy head bandage. Since the bandage is only temporary, and the risk of something going wrong isn’t very high, I think the advantages outweigh the disadvantages.

TK: Do you have any advice for other BAHA users who are considering going bilateral?

JK: Personally I think it’s a good idea, even though the prospect of getting surgery may be daunting. It’s a lot easier not having to always accommodate for only being able to hear on one side.

Posted in Families to Families, Microtia/ Atresia, Newsletter - Apr 2010 | 4 Comments

Son Inspires Torchbearer

Posted on April 28, 2010 by Amy Ho

Story By Alfie Lau – The Burnaby Now

Norman Wong won’t forget his moment of glory in Maple Ridge on March 10.

The North Burnaby man who works as a program supervisor for the Shaw Multicultural Channel won the right to carry the Paralympic torch by writing a 250-word essay on what the Paralympics mean to him.Wong’s inspirational story revolved around his five-year-old son Colvin.

“When my son was born, he was profoundly deaf in both of his ears,” said Wong. “Since his early years, he was your typical boy just having fun, and one wouldn’t even suspect that something was not right.

“We stared to have concerns when he didn’t have verbal language when he reached the age of two. We brought this up at a doctor’s visit, and then our doctor shared the same concerns and proceeded to move things along for hearing testing. After an audiology test, it was confirmed that he was diagnosed with severe to profound hearing loss.”

Norman and his wife Patty were shocked and saddened by the news, but they immediately started looking into what Colvin’s options were.Within months, Colvin was under the knife, and he had a cochlear implant, or digital processor, put inside his left ear. In addition, a hearing aid was put on Colvin’s right ear.

Norman put in his application to run with the Paralympic torch in late-December and received a call in mid-January telling him he was successful.

“I was ecstatic when they called,” said Wong. “I just thought this was a great fit for me, and I’m so honoured to be able to run with the Paralympic torch.”

Norman isn’t sure that Colvin and his younger brother Kade, 3, realize the significance of dad running with the torch, but they will once they see the $400 investment Norman is putting into the relay.

“Yes, I’m buying my torch, and I’m not sure what I’m going to do with it, but when the kids ask, I can tell them why it’s in the house,” said Norman.

Norman has tickets for the opening ceremonies of the Paralympics, and he hopes to attend some sledge hockey games as well. Because Norman works downtown, he had a close-up view of the Olympic cauldron.

“It was amazing to see how the city came alive during the Olympics,” said Norman. “I had the opportunity to see some women’s hockey and some speedskating, and there was just a great energy there.”

Wong hopes that energy translates to the Paralympics that run until March 21.

“I think people will really embrace the Paralympics because there are so many stories about the athletes’ courage and inspiration.

“I think that all the athletes are amazing people as human beings. It’s this type of positive human spirit in overcoming physical adversity that I want to share this with my son someday.

“Just because one may be different in some way shape or form, greatness is still possible if one puts in the passion and hard work. This is evident with all the Paralympians of 2010.”

Reprinted with permission from Burnaby Now, March 13, 2010

Photo courtesy of Troy Landreville/The Times

Posted in Newsletter - Apr 2010 | Comments Off

The “Daily Draw”

Posted on April 27, 2010 by Amy Ho

From the age of two, children use spontaneous drawing as a language medium but the potential becomes real only if adult care-givers take an interest by motivating themes. We believe that most children are still innocently deprived of drawing as a daily or frequent experience in their growing up.

Spontaneous drawing contributes to 1) mental growth 2) intellectual development 3) emotional health 4) enhanced learning 5) literacy 6) parent/child bonding. It does not require teaching, only motivation. You don’t have to be a teacher or an artist to motivate children to draw! A language emerges and develops through practice.

The Drawing Network distributes pamphlets to help parents establish a “daily draw” routine and teachers to integrate drawing into the school curriculum as an auxiliary language, kindergarten through middle and secondary school. There is no charge for pamphlets but small donations for printing and mailing are welcome.

Visit our website at http://drawnet.duetsoftware.net/

Bob Steele, for the Drawing Network, is an Associate Professor (Emeritus UBC)

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Signing Course First in North America

Posted on April 25, 2010 by Amy Ho

Story by Jennifer Moreau, The Burnaby Now

The Burnaby school district launched North America’s first online American Sign Language course last month.

“It’s about access, it’s about bridging cultures, all cultures of the world,” said Karen Taylor, the administrator for the Provincial Outreach Program for the Deaf and Hard of Hearing. The comments came as Taylor was speaking and signing to the trustees and district staff at the Feb. 23 school board meeting.

The new course means deaf and hard-of-hearing students can get equal access to a language their hearing counterparts can, Taylor said.”I believe it’s going to be a wonderful success, not only for the district but also for the province,” she said.

Any B.C. student can take the course and get credits for a second language. Adults and international students can also sign up. The course could be useful for anyone who needs to learn American Sign Language, including special-education assistants or bank employees, for example. American Sign Language is the third most commonly used language in North America.

There are instructor videos, entirely in American Sign Language, that teach students signing and finger spelling. There are also live video chats so students can get help from an instructor or practice with each other on split screens. The course instructor, Jo-Anne Robinson, connects and signs with students around the province via webcam, Skype or IChat.

“Nobody else is doing that,” Taylor said. “It’s cutting edge.”

Students can go at their own pace, but the course must be completed in 10 months.

The course is free, but there is a $100 deposit for materials. International students pay $730 for the course.

Thanks to the Family Network for Deaf Children for forwarding the information of the online ASL courses to us. Details about these courses from BC Provincial Outreach Program for Deaf and Hard of hearing Students is also posted at http://www.fndc.ca.

To register, please first go to Burnaby Online Website.

Click on ‘Courses’, look under ‘Modern Languages’, then click on ‘Intro ASL 11’ to read the course descriptions for info about how a student is assessed throughout the course as well as prerequisites.

When a student is ready to register, click on ‘Register Now’

Reprinted with permission from Burnaby Now, March 17, 2010

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