Posts Tagged ‘cochlear implants’

Savannah: My Deaf Journey

May 30, 2017

aid photo

Hey!

My name is Savannah. I am a hard of hearing high schooler, and I use a cochlear implant and a hearing aid to help me in my everyday activities.

From birth, I was diagnosed with profound hearing loss in my left ear and moderate hearing loss in my right. I have always known that I was deaf, and this has been a fact of life for me.

My first memories of using technology were in pre-school. I wore an FM receiver in my right ear and the teacher would wear an FM transmitter. Now, this transmitter looked quite different than the transmitters commonly used today. It was a large box, clipped to their hip, with a thin cord running up their chest and a tiny microphone attached to their shirt collar.

My kindergarten teacher named it “Tina the Transmitter.”

I used my receiver, complete with a bright pink mold, all the time. My mother would tape it to my ear during karate practice, so I could punch, kick, and hear while feeling secure.

Then, in first grade, I got my first hearing aid. It had a giraffe pattern on it and I loved it. So much so that my mother fought tooth and nail for my audiologist to allow me to get one in my left ear.

Why was this an issue, you ask? Hearing aids amplify sound and sends the waves through your cochlea and to the auditory nerve. But my left ear, audiologists said, wouldn’t be able to pick up the amplified sound, and would therefore be a waste of time. Nevertheless, we persisted, and a few months later I had bilateral hearing aids.

Throughout my elementary years, my parents would sometimes ask me if I wanted a cochlear implant in my left ear. I would adamantly refuse – saying I didn’t want to be deaf but rather hard of hearing.

In seventh grade, my tune changed. Middle school brought new challenges and new experiences. I began debating the pros and cons of a cochlear implant. I still used my hearing aids as well as a newer version of an FM transmitter.

The summer before eighth grade, I got the surgery. It was such a rewarding experience. While I was definitely scared going into the operating room, that fear dissolved quickly. I knew that I had made the right decision.

Master ear

Being turned on was really interesting. There were all these new gadgets and computer programs that controlled my head! My hearing rapidly improved from initial beeps to normal sound. While aural therapy was boring, it was worth every second to be able to hear new and exciting sounds. I learned a lot about sound booths and frequencies in that year!

Finally, I reached high school, where I use Cochlear’s Mini Microphone as an alternative to the transmitter I had once needed. Today, I am able to hold conversations at lunch and collaborate with classmates using this technology.

Being deaf is an important identity to me. I have changed a lot since the days when I rejected the very idea of getting implanted. While I may not understand everything people say to me, I can hear much, much more than I ever realized I could.

An interesting thing about being deaf/hard of hearing and using technology is that you live on the border between the deaf and hearing worlds. I really enjoy explaining to hearing people about my ears and my needs, and hopefully educating more people about my community and myself. But being on the border of my two worlds mean that my “people,” so to speak, are a select group of individuals. While I do try hard to connect with my deaf identity (learning ASL and deaf culture), and I try and integrate into hearing culture everyday, I have come to realize that my world is the border.

Being deaf is challenging. I have to deal with projects involving music and with watching videos without subtitles and with bad audio. Yet being deaf is rewarding as well! I have the ability to share with people my stories and spread awareness for deaf/hard of hearing people.

mydeafjourney2

I even created an Instagram account, @mydeafjourney, that I use to share my everyday experiences with deaf and hearing people alike!

So, if I had the chance to stop being deaf, I wouldn’t take it.

Being deaf is who I am. And I don’t want to erase my identity.

<3 Savannah

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Why My Child Would Not Wear his Cochlear Implants

May 15, 2017

lost-processor

 

Why won’t my child wear his cochlear implants?

As parents 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 Auditory Verbal Therapist (AVT) on a weekly basis.  Our son could definitively hear with his implant and responded well after activation.  As the weeks went on, our therapist 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 was working properly.

We set-up an appointment with the audiologist and she brought in a representative 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 cochlear implant 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.

Mapping Sounds

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. “That’s how your son’s processor is mapped,” she told us.  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.

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

 

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Sound and Fury, Heather Artinian Today

December 12, 2013

Sound_and_Fury

In October 2000, the film “Sound and Fury” was released and shown in film festivals around the United States . The story of two brothers in an extended third generation deaf family was a raw and poignant look inside the choices that families of deaf children face.  The choices initially tore the families apart.

The movie focused on the Artinian family: Peter and Chris Artinian are brothers, sons of hearing parents. Peter and his wife, Nita, are both deaf. They have three deaf children, Heather, Timothy and C.J. Chris is hearing and is married to a hearing woman, Mari, whose parents are deaf and use American Sign Language to communicate. Chris and Mari are the parents of Emily, Christopher and Peter (twins), and Joey and Nicholas (also twins). Their son Peter (named after Chris’ brother and grandfather, so Peter is Peter III) is also deaf. “Sound and Fury” followed both families as they explored choices for their children, with one set of parents choosing the implant option( Chris and Mari) and the other opted not to (Peter and Nita.)

Mov_SoundFury6YrsLater

Six years later, another documentary featured 12-year-old Heather and a glimpse of her day-to-day life.

Karen Putz from Hands & Voices did a follow up with the families:  Sound and Fury:  A Family Comes Together Again.

Today, Heather is a junior at Georgetown University and she recently did a TED Talk there:

 

 

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