Cochlear Implants in the Middle of Nowhere

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.

Decorating CI Processors

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)

Becoming an Advocate

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

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

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

Going to Disneyland?

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.

CI Circle - the next generation

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

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

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