Posts Tagged ‘audiology’

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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The Legendary Marion Downs

November 19, 2014

 

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It is with sadness but celebration, that we hear of the passing of a true pioneer and the Grand Madame of pediatric audiology, Marion Downs. As she lived her life, she passed away with dignity and grace on November 13, 2014. At 100 years of age, she leaves a legacy that touches all of us; parents for her perseverance in the implementation of newborn hearing screening and advocacy for parent choice; children who have better outcomes and opportunities as a result of early diagnosis and intervention; professionals in audiology, medicine and deaf education who have had the benefit of her teaching, influence, and mentorship; and mankind for a woman who taught us all to “Shut Up and Live” with meaning, laughter, and pride.

shut up and live

I was fortunate to have Marion as a teacher when I was a graduate student and as a mentor throughout my career.  As a parent, she helped me gain confidence in my own advocacy abilities for my daughter and for her education.

Marion will remain a role model and guiding light as we continue our advocacy work on behalf of parents and children who are deaf and hard of hearing. Her influence changed our world and inspired many. May her legacy be not only the grace, kindness, and patience with which she treated people, but also her optimism, determination, and fearlessness in living her life.

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Cheryl Johnson, Past President, Hands & Voices

 

 

If you didn’t get a chance to meet her, she was a spitfire of a lady: grounded, interested in all of life, and just sparkling with energy and drive. She packed several lives into her century: skydiving and triathlons, research and authorship included. I got such a kick out of her story about why she chose audiology: that enrollment line in college was the shortest! We are glad you picked “our” line, Marion, but I do have the feeling that any field of study would have benefited from your closer look at how things are and how they might be. At Hands & Voices, we truly appreciate her respect and encouragement of families to truly have a place at the table in designing systems for hearing screening and follow up. Her friend and co-worker Dr. Jerry Northern introduced her at her 100th birthday party last January. He remembered something she often quoted: ‘Live for today…plan for tomorrow…but let’s party tonight!’” Work hard and play hard – it’s a good motto.

Sara Kennedy, Executive Director of Colorado Hands & Voices

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I was fortunate to live in Colorado and be a part of the Marion Downs National Center as the parent consultant starting in 1996.  It was there that I began to get to know Marion.  My favorite memories of Marion include being in committee meetings with her when a group of us would be discussing a complex issue or situation, and begin to commiserate on why something couldn’t get down and/or why the system couldn’t change.  At some point in the meeting, Marion would speak up and say,  “Well, let’s just get it done”.  And that was it.  She never looked at why something couldn’t happen, but just to keep moving forward and MAKE things happen on behalf of families and kids who are Deaf/Hard of Hearing. I always thought Marion was just one of those ‘lucky’ older individuals that didn’t have to deal with what others had to deal with in old age.  She was just one of the lucky ones for whom age didn’t really matter.  It wasn’t until I read her book,  “Shut Up and Live” that I realized that Marion was human after all, that she was subject to the same ailments and challenges of growing older – but there was a difference!  In spite of those things, she kept busy, active, moving forward, jumping out of airplanes, contributing to her lifelong commitment in her career to improve the lives of children.  The world was a better place with her in it!  She will be missed.

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Janet Des Georges

About Marion Downs

Marion Downs Interview

In the Minds of Champions–Marion Downs

Marion Down’s 100th Birthday

Million Dollar Gift for Marion Downs Center

Marion Downs Passes Away

 

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