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.

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