Tuesday, September 26, 2017

Back-to-School with Cochlear Implants – What You Need to Know

By Eric Sherman

School is back in session. Is your child prepared?  I’m sure you’ve already purchased items such as, backpack, pencils, paper, pens, etc., but what about your child’s cochlear implant(s)?  If you are like our family and sending your child off to school with cochlear implants, there are things you should know to help your child succeed in the classroom.  

Cochlear implants have been around for more than 30 years, but it is amazing how few schools or teachers are aware of this wonderful technology.  In our experience, most teachers and schools have never worked with a student who has cochlear implants, and we are in the second largest school district in the country. 

The population of school aged children receiving cochlear implants is growing. Unfortunately, parents have to make sure teachers and schools are educated about their child’s cochlear implants and hearing needs.  If you child is entering a public school in the U.S. with a cochlear implant, you should have an IEP or a 504 plan agreement in place.  These are legal documents under the Individual Disability Education Act (IDEA) to insure your child receives the necessary support in the classroom.  

The Individualized Educational Program (IEP) or a 504 plan is developed to ensure that a child with a disability receives specialized instruction, related services, and accommodations that will ensure their academic success and access to the learning environment.  Similar laws or rights may exist in other countries.

seating for DHH student
Classroom seating arrangement is important
to the success of a DHH student.
When appropriate accommodations are provided children with cochlear implants do very well in mainstream classrooms or in a special education programs.  We have found that the following steps are helpful to our child’s success in the classroom: 
  • Pack a bag in your child’s backpack with extra accessories (i.e. sound cord, audio jacks, etc.), batteries and troubleshooting instructions with your contact info. 
  • Make sure the school has appropriate assistive listening equipment in place, per IEP or 504 plan, at the start of school year.  This is generally an FM system that can directly connect to your child’s processor(s).
  • Meet with teachers during the first week of school and explain how the cochlear implant works, troubleshooting, etc. If your child is old enough or has the ability to advocate for themselves, great!  If not, you’ll still want to discuss the following:

o     Optimal seating for hearing needs in the classroom
o    How to change batteries, sound cords and headpieces, different programs on processor
o    Breaks if needed.  The sounds of a noisy classroom can be overwhelming for some children and small breaks can be helpful.
o     Possible behaviors that might occur if the processors aren’t working properly
o     Speaking naturally, in a clear voice, not talking to fast or shouting
o     Making sure child is following along with instruction
o     Repeating questions and answers during class discussions
o    When using audio & video equipment making sure it can connect to assistive listening equipment
o  Explaining to the teacher the importance of using the assistive listening equipment (i.e. FM system, Roger Pen, etc.)

Every child entering school has different hearing needs and it’s good to look for resources that will best support your child.   We found Advanced Bionics Tools for Schools had a pretty comprehensive list of materials. They have communication logs, tips for teachers, assessment tools, as well as other information that could be helpful in addressing your child’s needs.

If your child participates in school sports, extra-curricular activities, or just plays on the playground, make sure you have an accessory that secures and helps protect the processors.    Our son uses the specialty shirt Ci Wear to secure his devices.

It’s important to be involved and collaborate in your child’s education.  Nobody knows your child’s hearing needs better than you do.  The more the school knows the greater success your child will have in the classroom. 

If you like stories like this, we invite you to subscribe to our blog as well share with others.

Tuesday, May 16, 2017

Overstimulation May Be Why Your Child Won’t Wear Cochlear Implant processors

By Eric Sherman

Recently I shared why my child refused to wear his CochlearImplant(s). Unfortunately, the recommendation from others, including hearing health professionals, was just do your best to keep your child’s processor on.

Forcing a child to wear a cochlear implant that they clearly don’t want to wear is not the correct approach. Refusing to wear CI processor(s) is generally a symptom of a problem that a child can’t necessarily express. Their behavior becomes the only way to communicate the issue.

Pediatric Audiologist Joan Hewitt, Au.D., who specializes in cochlear implants says, “Our brains crave hearing.  Children should want to have their CIs on all the time.  If a child resists putting the CIs on in the morning, cries or winces when they are put on, or fails to replace the headpiece when it falls off, there is a strong possibility that the CIs are providing too much stimulation.   Some children appear shy or withdrawn because the stimulation is so great that interacting is painful. Others respond to over stimulation by being loud and aggressive.” 

In the article, "Overstimulation in Children with Cochlear Implants," Berger et al (2011) found symptoms which indicated children were overstimulated by their cochlear implants. They included: reluctance or refusal to wear the device, overly loud voices, poor articulation, short attention span or agitated behavior, and no improvement in symptoms despite appropriate therapy. When the researchers reduced the stimulation levels, they found very rapid improvement in voice quality and vocal loudness and gradual improvement in articulation.  Finally, they found "surprising effects on the children's behavior" such that the parents reported a marked improvement in attention and reduction in agitation.

If you find that your child is refusing to wear their cochlear implants, an overstimulating map could be the problem.  You should discuss the issue in detail with your child’s audiologist.

Jennifer Mertes, AuD, CCC-A, and Jill Chinnici, MA, CCC-A wrote in their article,
“Cochlear Implants — Considerations in Programming for the Pediatric Population,” (2006) AudiologyOnline, that children are not little adults. To address their CI needs, they require an experienced clinician. Most children are unable to provide accurate feedback while the audiologist programs their cochlear implant and therefore, the clinician must take many things into account:

  1. The audiologist's past experiences with other patients

  2. Updated information regarding the child's progress (from parents, therapists and teachers)

  3. Audiometric test measures

  4. Observations of the child during programming

  5. Objective measurements (NRT/NRI, ESRT)

  6. If age appropriate, the clinician will train the child to participate in programming (Conditioned Play Audiometry (CPA), loudness growth task.
Many of the decisions made during programming appointments come from the clinician's knowledge and experience, rather than the child's behavioral responses.

If your child continues to refuse to wear their processors after a remapping, take into consideration your audiologist’s experience and mapping approach and seek a second opinion.

When we sought out a second opinion with a new audiologist who specializes in pediatrics, she found our child’s map was overstimulating. Once she remapped our son's cochlear implants using a different approach, he didn't have a problem wearing his processors again.


More about the author

Eric Sherman is the inventor and founder of Ci Wear, the patented specialty shirt designed to secure and protect cochlear implant processors. Ideal for sports and water activities. No need for added accessories or clipping processors to collar. Shirts are manufactured in the USA and are available in youth and adult sizes at CIWear.com 

#cochlearimplants, #audiology, #parenting #mapping

Friday, May 5, 2017

Why My Child Won't Wear Their Cochlear Implant(s)?

By Eric Sherman


As a parent of a child with cochlear implants, the answer to this question shocked us and made us feel as if we were torturing our child. 

Our child was first implanted at about a year old and was seeing an AVT on a weekly basis.  Our son could definitively hear with his implant and responded well after activation.  As the weeks went on, our AVT would tell us that our son was not hearing certain vowels or consonants sounds and recommended we see our audiologist to have his map adjusted.

We went to our audiologist and told her that the AVT said our son was not hearing the /p/ or /s/ sound (for example).  The audiologist plugged our son’s processor up to the computer and began saying /ba/, /ba/, /ba/ over and over at different voice levels watching to see how our son responded then she would make changes to the map. 

We made this trip to the audiologist constantly over several months because the AVT kept telling us that our son was not hearing different vowels and consonant sounds.   We were remapping our son’s processor so often that we were starting to hear /ba/, /ba/, ba/ in our sleep. Then one day our son just refused to wear his processor.  He would throw off the headpiece as fast as we stuck it back on his head.  Unfortunately, He didn’t have the language ability to tell us why he wouldn’t wear the processor.  Our AVT suggested we go back to see the audiologist to check the equipment to make sure it’s working properly.

We set-up an appointment with the audiologist and she brought in a rep from the manufacturer to help go through diagnostics of the equipment to see if anything was wrong.  After a thorough review everything seemed to checkout.  Sadly, our son still refused to wear his CI processor.  Our audiologist’s recommended that we do our best to keep his headpiece on at all times, maybe use a headband, noting that maybe this was more of a behavioral issue.

Over the next couple of weeks, we did our best to keep our son’s headpiece on, but he wouldn’t have it. The AVT was starting to have problems working with our son.  He started to have new behaviors and was not responding to therapy. We were feeling that something was wrong with our child other than hearing loss. 

Eventually, our AVT recommended we see another audiologist to get a second opinion about our son’s equipment and map.  She sent us to an audiologist who is an expert working with cochlear implant pediatric patients.  This new audiologist was known for fixing issues children may be having with their implants.   

I remember how distraught my wife and I were as we shared our story with the new audiologist and showed her how our son was resisting wearing his processor.  She assured us that she would look at everything and see what she could do to help.  After running diagnostics, the audiologist turned to us and said, “there’s nothing wrong with your child or his equipment.”  After a massive sigh of relief, the audiologist told us our son’s map was over stimulating and probably the main reason why he is resisting wearing his processor.

The audiologist used the analogy of driving through the mountains with the radio volume turned all the way up with bad receptions; she said that was how your son’s processor was mapped.  She couldn’t blame him for not wanting to wear it.  We felt horrible as if we had tortured our child for weeks trying to make him wear his headpiece all the time.

What happened next truly shocked us.  This new audiologist began mapping our son using different consonant and vowels sounds, no more /ba/, /ba/, /ba/.  With her partner they elicited responses from our son using different vowel consonant sounds like /s/, /oo/, /ah/, /p/, /t/ etc.  After they were done, our son seemed very happy and joyous about the sounds around him.  From that moment on, our son never had a problem wearing his processor again.

I share this story because too often I hear similar stories and the recommendation to the parents is always try to keep your child’s processors on.  A behavior, such as refusing to wear a processor, is generally a symptom of a problem that a child can’t necessarily express. A behavior becomes the only way to communicate.  If your child is refusing to wear their processor(s), find out why.  Your child might not like the feel on their ear or the magnet strength is to strong, etc.  If the physical comfort of the processor is not the problem, check with your audiologist about the equipment and map.  If you walk out of your audiologist office and they have not resolved the issue, get a second opinion.

Don’t torture your child like we did by making them wear a poorly mapped processor.  Every day, when putting on your child’s device, do a simple check to see if your child can repeat or respond to different speech sounds or words.   If you feel there is a problem, talk to your speech or AVT therapist at your next visit or schedule an appointment with your audiologist.   Finally, if your audiologist doesn’t map your child using different speech sounds, it might be time to find a new audiologist.

Sounds used to map my child's cochlear implant processor
More about the author
Eric Sherman is the inventor and founder of Ci Wear, the patented specialty shirt designed to secure and protect cochlear implant processors. Ideal for sports and water activities. No need for added accessories or clipping processors to collar. Shirts are manufactured in the USA and are available in youth and adult sizes at CIWear.com

Friday, December 2, 2016

Don't Risk Your Cochlear Implant Processor

Recently, this story was sent to us by an audiology group about one of their elementary aged patients who was surfing while on vacation.

A storm was brewing, and a large wave pulled off his entire cochlear implant processor and headpiece. Devastated, he swam in to tell his dad, but searching for it was nearly impossible in the strong surf. For the next 3 days while the storm raged, his dad went down to the shore and watched the pattern of the wind and the waves. On the family's last day of vacation, the storm had finally subsided so the dad decided to snorkel near some rocks the waves had been hitting. During one dive as a wave pulled away sand from the floor of the ocean, the dad saw something red under a rock. When he swam down to investigate, he found the processor still connected to the headpiece, which was stuck under the rock! However, when the dad pulled on the processor, the headpiece would not budge. The dad knew that he was running out of air and, if he went back to the surface to get a breath, another wave would come and bury the device again. So, he gave one final tug which pulled the headpiece free. He returned to the surface with the entire device! As if finding the processor after 3 days in the ocean was not amazing enough, the family was astounded to see that it still worked!

This is truly amazing story with a happy ending, but many families and individuals around the world are not as lucky. Many individuals clip their processor to some part of their clothing or body only to find it lost after being tossed by a wave, jumping in a lake or crashing on mountain bike. Mishaps in sports and or during recreational activities happen, but for people with cochlear implants it can be very costly. 

As a parent of a child with bilateral cochlear implants, our greatest anxieties and fears came when our son entered the water or participated in any activity where there was a chance he could lose his processors. We felt like helicopter parents because of his processors. We hated these feelings and we never wanted to limit our child’s ability to participate in any activity, so we created the Ci Wear shirt.

Ci Wear’s patented designed shirt envelops and secures cochlear implant processor(s). Integral to the shirt are pockets with internal elastic that allows you to affix your processor to the band and run the sound cord up under the shirt. This reduces the risk of a wave, hard fall, crash or person knocking off your processor(s).

This holiday season give someone the freedom, confidence and ability to participate and enjoy their activities without the fear of losing their cochlear implant device, with Ci Wear. Shirts are available in youth and adult size at www.ciwear.com. Use voucher CISECURE and save 15% on your purchase.


#cochlearimplants #Secure #CiWear 



Monday, November 21, 2016

IS THERE AN "I" IN IEP

By Eric Sherman


According to the Department of Education“each public school child who receives special education and related services must have an Individualized Education Program (IEP). Each IEP must be designed for one student and must be a truly individualized document.
To create an effective IEP, parents, teachers, other school staff--and often the student--must come together to look closely at the student's unique needs. These individuals pool knowledge, experience and commitment to design an educational program that will help the student be involved in, and progress in, the general curriculum. The IEP guides the delivery of special education supports and services for the student with a disability. Without a doubt, writing--and implementing--an effective IEP requires teamwork.” 
If the IEP is designed to be a collaborative process, why are parents always fighting for their child to receive appropriate services or school placement? 
We have learned over the years it doesn’t matter what the IEP team recommends, it comes down to what the school or the District wants to offer and the parent agreeing or disagreeing with the offer.
The first time we were hit with this reality was when we were requesting more speech for our son in a very contentious IEP meeting over speech services.  Our son has bilateral cochlear implants and is on the autism spectrum.  His co-occurring disability poses a lot of challenges, so we argued our facts and reasons why more speech was needed. The speech therapist, who never worked with our son or had conducted an assessment, explained to us that our son was being offered the same amount of speech as all the other students receive.  Needless to say, we jumped on the statement claiming the IEP was not individualized to our son, but predetermined by the District. The school district agreed to the additional speech hours, but has been trying to change our son’s speech services in every IEP since. 
We have found over the years, our IEP teams have not always been made up of knowledgeable school personnel looking to develop an educational program that is individualized to our son’s needs. We’ve had to fight school administrators, who’ve never met our son or lack any understanding about his disabilities as well as school service providers, who’ve never worked with our son, then write IEP goals and suggest inappropriate services.  We’ve even had school placement offered to us, when no one on the IEP team even knew anything about the program being offered.
For the most part, schools and school districts will do their best to create an IEP for a child with special needs within the bounds of their budgets, personnel, services and programs they have available.  But individualizing a program outside those limits becomes a real fight for parents.

If an educational program is to be truly individualized to the student’s needs as the law intends, those on the IEP team (including parents) need to be fully knowledgeable and have a good understanding of the student’s disability and their needs. It is imperative for the IEP team to know about all available services and school programs that appropriately address the student’s individual need without prejudice.
As long as schools districts consider limits on what they can offer students with disabilities, the “I” in IEP will always be hard to define. Parents have to be knowledgeable advocates for their child to make sure the "I" means individual. 
Please feel free to leave a question or comment about your child’s IEP and we will be happy to respond.  The more parents share, the better prepared we are to help our children with special needs.

Tuesday, October 4, 2016

Cochlear Implant Experience – Wearing CI Device With Ci Wear

Leah, who’s a bilateral cochlear implant recipient shares about her 20th Wedding Anniversary Trip to Australia and how Ci Wear helped enhance her experience.

Hello Rock Stars of the Ci Wear Team,

I must admit that these few experiences I am sharing here - would have been very different deaf.  For the two separate days that we did these excursions, I wore my Bilateral CI Advanced Bionics Neptune processors all day. The CI Wear shirt is so comfortable.

1. Snorkeling at the Great Barrier Reef - the view was indeed inspiring - the colors were awesome, almost unfathomable the diverse landscape - but the sounds!  The water, the biologists guided talks, the snorkeling-helpers! I was really glad I could hear the helpers...  When I first sat on the edge of the platform and peeked into the water, it was so clear it looked like I was on the top of a skyscraper, I thought I was going to fall right down to the bottom! I heard all of the snorkeling helpers' reassuring words and direction when they were putting on my lifejacket and directing me on the placement of how to hold my swim noodle.  They even gave me a snorkel tube with red-tape, in case my head pieces fell off and I was in distress.  - But guess what?  THE CI HEAD PIECES STAYED IN PLACE!  And it is funny now, thinking out it… I was soooo nervous about ME falling, but was never in fear that my CIs would end up at the bottom of the ocean - as they were tucked in your fabulous shirt!
 
CI devices secured in Ci Wear shirt sleeve pockets
2. THE BEST EXPERIENCE WITH CI WEAR. We did the bridge climb in Sydney! It turns out the bridge form you fill out asks if you wear Hearing aids.  You can not wear hearing aids on the climb as they will blow off your head.  I explained that I wear CIs and that I would be okay on the climb with my CI Wear shirt.  They called over the head of security and the manager of the climb-office.  I demonstrated showing them the CI Wear pockets, the Neptune clips secured to the white bands, the pockets, the wire-feed section and from the processor to the magnetic head pieces.  And then without missing a beat - I said, “And if there IS a big-huge wind that does blow the magnets off my head... - (without stopping my words, I swept both my hands against my scalp - you should’ve seen their eyes!) … they are safe and secure, as they are tethered to me, and I can simple click the magnets together and toss them in my shirt. (and there they were, my CIs safe and sound).  The manager and security chief were SOOOO impressed!  They had never seen anything like it!  They commented how very well prepared I was to do the bridge climb!  We were in the front of the group and I heard the guide, the cars on the bridge, the commuter trains, and my husband’s romantic words at the top of the bridge, and my son’s woo-hoos when we completed this incredible activity!  www.bridgeclimb.com

Feeling like you're on top of the world when you can hear "Down Under."
3. When we got home the garden was very overgrown and a part of the fencing needed repair - the shirt was great. I could work up a sweat digging around, and I could dance around to my Spotify music playing on my phone, and all the while my CIs were safe and sound!

During work secure your CI with Ci Wear
Once again, thank you and many blessings to your company!

Get out there and hear!!!!

- Leah P


If you are looking for a comfortable wearing option that secures your cochlear implants try a Ci Wear shirt.  Visit us at  www.ciwear.com.

#cochlearimplants #CIShirt #Snorkling #hearing

Friday, September 9, 2016

Cochlear Implant Equipment – Why Does It Cost So Much To Replace?

By Eric Sherman

When your cochlear implant equipment is no longer under warranty, the cost of replacement parts such as sound cords, headpieces or the processor can seem quite pricey.  Sometimes our health insurance will cover part of the cost, but generally reimbursement for parts can be minuscule to the actual purchase price we pay.  For example, our insurance valued the cost of a $125 sound cord at $11 with our plan and then stated they were only going to reimburse us at 50% of the $11, because our CI manufacturer was not in-network.
   
To most of us, the replacement costs can seem outrageous even with insurance.  But… are the CI manufactures taking advantage of us just because there is no competition for their unique parts or are there other reasons such as their warranties on equipment; R & D, etc., to justify these higher prices. Depending upon the CI Manufacturer, warranties may be 1-5 years with free replacement on parts or processors and may include shipping.

Additionally, most people accept the idea that a lot of the cost comes from R & D.  CI devices continue to evolve offering better sound quality and new features that enhance the user’s listening experience.  Cochlear implants are medical devices that fall under government regulations. Compliance to these regulations can also add to the expense.  Then you have to look at the total size of the cochlear implant market which adds to costs.  According to the National institute of Deafness and Communication Disorders (NIDCD) as of 2012 there were 324,200 registered cochlear implant recipients worldwide,  and over 58,000 in the US.
 
I’m sure the numbers have gone up over the last 4 years, but in general terms this would be considered a niche market.  Furthermore, the 3 cochlear implant manufacturers divide up the total CI market making their market share even smaller.  Due to constant changes in technology and new product offerings, existing brand models become a subset of an already small market and thus become a limiting factor to mass produce proprietary items.  With no real aftermarket for replacement parts to sell generic options, people are left to pay the higher price from the manufacturers or search online to purchase parts from another person.  All of these factors seem to play into the higher cost of replacing parts for cochlear implants, but consider the replacement cost when the item is not under warranty. 

Like many families we’ve replaced our son’s processor, sound cords and headpieces numerous times while under warranty.  Most often our daily activities might cause these sensitive devices to fail.  For example, a child is sucking or chewing on their headpiece or sound cord, a processor getting damaged during an activity because of too much moisture from sweat or being knocked off the body.  These sensitive devices will fail and need to be replaced.

Think about this, your smartphone stops working within the manufacturer’s warranty period because you caused physical damage to it, like dropping it in water or cracking the screen. The manufacturer is not going to replace it, unless you’ve paid extra for an extended warranty. Yet CI manufactures know how important it is for you to hear and they usually, without question, provide you a replacement while under warranty regardless of how many times you request a replacement.

Given the advantageous warranties and the responsiveness of the CI manufacturers, the cost of replacement parts may not be that outrageous. Unfortunately, it is an unexpected expense and admittedly I complain about this as well. However; the cost may not seem as bad if you think about it in terms of what it would be without a warranty. Let’s hope CI manufacturers continue to support their CI recipients by maintaining or providing longer term warranties on their products. 

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