Posts Tagged ‘cochlear implants’

LaShawna Sims: Deaf with Autism

December 5, 2018

I have heard that oftentimes the first deaf or hard of hearing person some people meet is their own deaf or hard of hearing child. While for us that wasn’t the case, we had a similar experience, but with a different diagnosis. We have two boys who are both severe to profoundly deaf and bilateral cochlear implant users. Our youngest, also has Autism.

We knew one person with Autism. All we knew of Autism was what we saw in that one individual. I remember telling myself things like; no, our youngest doesn’t have Autism. He doesn’t act the same way or do the same things that person does. I think it’s just that we don’t socialize him enough since his big brother started school. His progress, or lack thereof, in speech is fine. We were told that not all children with cochlear implants progress at the same speed. The professionals advised us to not compare his progress in speech with his older brother’s progress.


A common question asked in our home is, “Is it the Autism, the hearing loss or just him being a kid?”. Our son was diagnosed as “Moderate” and “High-Functioning” on the Autism Spectrum. He is also non-verbal but uses some ASL and the Picture Exchange Communication System (PECS) to communicate with us. Over the years his receptive language skills have blossomed. Most days he wears his CIs with no issues. Other days, he knocks them off as if they are causing discomfort. It is often hard to determine whether or not he is having a sensory moment because of the Autism, being a “typical” child who is having a moment of defiance, or if there is something wrong with his CIs.

I like to say there is a lot of troubleshooting that goes on with our son. Some days he is happy to put his CIs on, while others days it can be a bit of a tug of war. I have a hard time somedays making him put his CIs on because in some ways I feel like I am not being mindful of his Autism diagnosis and what effects the “silence to instant sound” may have on him. Because his expressive language is still progressing, it can be a challenge to know exactly what is going on with him. He can let us know in sign or with PECS that he is hurt, sad, calm, or silly and wiggly. But when it comes to expressing exactly WHY he is feeling those ways, we aren’t always sure.

In the past, Logan has never really gotten a good “map” for his CIs and we think that is due to his Autism diagnosis. Getting him to reliably respond to any sounds he is hearing has been a work in progress. Before he was diagnosed, I dreaded going to the audiologist because it was a literal WWE match trying to hold him down just to run and impedance test. I can remember making sure that I wore clothes that would allow me to wrestle with him and not look completely disheveled after the appointment. Leaving those appointments, I would feel so defeated. I’d feel like I was a terrible parent for forcing him to go through the appointment. Then on the flip side, I knew that I wanted him to have as much good access to sound as possible because that’s what he needed if we wanted him to eventually use spoken language. For a number of years, all of his “maps” were manually made and set very conservatively.

Once we got the Autism diagnosis, things changed for the better. His behaviors all began to make sense. We started ABA therapy for him. His therapists have been quite accommodating in respecting our wishes of incorporating ASL in his therapy as a way of communication. Almost all of his therapists knew not one sign in ASL. Now, many of them have been inspired to learn more ASL and even use it with some of their other non-verbal clients. We’ve even had much better success at the audiologist! I can happily say that I no longer have to wear my “wrestling” attire to an appointment. With the help of his ABA therapists, we have worked on “mock audiology appointments” which have proven to be successful for Logan. He has gotten the best “maps” he’s ever had in his initial years of having cochlear implants.

While things are progressively getting better, we still have our struggles. We are learning together as a family. It’s not easy to pick apart which diagnosis is causing whatever action, feeling or emotion he may be experiencing. All we can do is take it day by day and one step at a time. In all of those hours and steps, we revel in the fact that he is uniquely him and we love every little thing about him. It makes us stronger as individuals and stronger as a family. Even though we have had some hard days, it’s always nice to look back at those struggles and celebrate how far Logan has come. It’s a great reminder that despite our current struggle, we will overcome it together as a family. For that, we are blessed and grateful for this unique journey.

LaShawna Sims, Bilingual Southern Nevada Regional Guide

Nevada Hands & Voices

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Ashlei Powell: Creating Deaf Wearables

May 29, 2018

My name is Ashlei Powell and I have bilateral cochlear implants. I became deaf at eleven months from meningitis and received my first implant, on my second birthday, in 1990. I was the youngest recipient in the USA (just after FDA approved the cochlear implant for children) and the first youngest, in the world at the time, to receive a cochlear implant.


After receiving my first implant, I attended speech therapy for several years to learn how to listen and speak. Growing up, I had the opportunity to speak about my hearing experiences at auctions, in news interviews, and even with the first deaf Miss America, Heather Whitestone. After fifteen years of wearing just one cochlear implant on my right side, I felt like I was missing a puzzle piece. In 2005, I received my second implant and it was indeed, the missing puzzle piece for me.


I attended Pensacola Christian College in Florida for three years, before coming back home to marry my college sweetheart, Joe. We are proud parents of two dogs and a spunky and sweet two-year-old boy, Jackson.

My life has had a few challenges, but has been incredible and full of blessings. As being a Cochlear Implant recipient, I had to find ways to help me listen in life and in school that would work best for me. I made it work and accomplished a lot. I love being a bilateral recipient and I enjoy sharing my story to help others who are considering cochlear implants.

I have always wanted to be a nurse, but it wasn’t what the Lord wanted for me, so I tried a few classes in the medical field to see where the Lord wanted me to go. I’m now currently working as a phlebotomist at a hospital, running my own Deaf Wearables business, and also being a mommy and a wife.

In summer of 2017, I participated in a physically challenging obstacle course at Copper Mountain.  I looked everywhere online for outer wear that showed I couldn’t hear…..something I could attach or could wear on my clothes, arm or headband that said the word, “deaf”. There was not one single thing out there and I thought it was so frustrating and not fair to the deaf community.
I recently started producing of all kinds of Deaf Wearables for all ages, that can be used in all kinds of activities such as skiing, marathons, hikes, walks, etc., even daily life.  The reason why I have a line going through the ear is because it’s very simple and produces a quick understanding, like the universal symbol, to let people know the person can’t hear.  I wanted to present this collection of wearables in a fun and inviting way. I know how hard it is to do everyday activities without people being aware of someone’s deafness. My products contain: reflective vests, shirts, neon headbands, key chains, bags, stickers, etc. that have the word, “deaf” on it. My goal is to produce deaf wearables that people would be excited and proud to let others know that they’re deaf–all while being fashionably current.

 

For more information on Deaf Wearables:

www.deafwearables.com 

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Clare Patterson: There is Beauty in Everything

March 6, 2018

clare patterson HV story

It is strange how the human brain doesn’t notice slow disappearances over time. Sure, our brains are well attuned to rapidly changing conditions but woefully inept at noticing small changes.

My life so far has been a string of “un/lucky coincidences”.

This is why I wasn’t diagnosed with hearing loss until I was 18 and a first year student at a selective liberal arts college.

Rewinding a bit, when I was born in 1986 there was no newborn hearing screening. My parents thought I was “advanced” because by 6-8 months I would mimic adult conversations except I didn’t make any sounds.

School came around and I was lucky that my neighborhood school had Deaf and HOH integrated mainstream program. I began learning ASL when I started kindergarten.

I needed years of speech therapy, yet my hearing wasn’t tested. I remember emerging from the city mandated eye testing in tears because I failed so horribly that the lady administering the test tapped me on the shoulder and told me I was “supposed to be looking for the numbers”. What numbers? And how telling was it that she had to tap me on my shoulder to get my attention?

The first hearing test I remember having was in 5th grade. Until then I had excelled in all my classes and had been in special education for both speech therapy and gifted classes. All my classes except the very small gifted class had interpreters. I really don’t remember how much I relied on them but it was enough that when I transferred to a private school for 6th grade, I noticed a distinct change in my social life.

The middle school social milieux absolutely revolves abound inside jokes and I was lost. The disparity between my public school and private school was so pronounced that I and the other two “scholarship girls” in my grade had tutors for between a year and 4 years each. I had a formal tutor for one year.

Eventually, and with the help of amazing teachers, I became a great student at one of the best college prep schools in the South. I started winning awards for Latin (I refused to take a spoken language because I’ve always had trouble pronouncing words), art, writing BUT I was alone in my own world. I ate lunch alone daily, often venturing outside even in the cold so that I wouldn’t be so conspicuously out of place.

Class size was so small that I could keep up in class but where the real action of an all girl’s high school happens in whispered jokes and quips.

I missed all of those and looking back, despite our school being located in an Episcopalian church, when I was on those awful training runs for soccer or lacrosse, or walking to my friend’s house a few blocks away, the ringing of the bells on the half hour and hour just disappeared. One time when walking with my friend Connor to her house barely a mile away, she mentioned that it was “3:30”. “How the heck do you know that? You refuse to wear a watch!” I implored, incredulous that she thought she could tell time without a watch. She slowed down her walk and said “the church bells just rang!”. “Oh, yeah. They did”, I replied sheepishly but my stomach was in knots realizing that just a block or two from school, I couldn’t hear the bells, the ringing of the bells.

clare patterson HV story 2

Like all things good and bad, high school ended. I had received a full scholarship to my number one college choice far, far away from my home.

I moved, with many unexpected tears, to a small liberal arts college quite literally in the middle of a cornfield in rural Iowa. Within my first month I had gone to the nearest “city” (more like a town with a K-mart AND a Walmart) and was diagnosed with mostly flat sensorineural hearing loss that was moderate. Hearing aids were ordered, during fall break I came back home and saw a big city ENT doc who repeated the hearing test and did a CT scan looking for any other explanation for my aberrant test results but, the results were accurate, the new ones were even a bit worse. I had moderate SNHL (sensorineural hearing loss). My parents started piecing together anecdotes from my past. My mishearing of song lyrics, the utter lack of skill needed to sneak up on me, my seeming inability to be social at large family events.

When I returned to school my three best friends borrowed a car to drive me to the audiologist nearly an hour away for my brand new BTE (behind the ear) hearing aids to be fit. They took advantage of the shopping in a town twice the size of our college town while I discovered that paper rustling is an annoying sound and why people were always annoyed when I clicked pens. I was absolutely aghast that paper made noise and pens clicking was actually annoying.

That was all in the first semester of college so for most people I knew, me having hearing loss was normal. My college purchased an FM system for me, back when the advanced FM systems consisted of two boxes, and I did the awkward “drop off the prof’s box and mic before class and hope they notice it”.

By my second year in college my friends began noticing that I wasn’t hearing as well as usual and that my speech had become “blurry”.

I got a ride with a friend to the big town and found that my hearing loss had dropped to “severe”. My hearing aids were turned up and I could hear most things again. Life, as it always does, went on.

The next year I just borrowed a friend’s car and drove through the aftermath of a midwestern blizzard with snow piled higher than my lanky (at the time) 5’8.5″ on either side of the back roads I had to take. I didn’t take a friend this time, I knew that I had woken up one day almost completely deaf. Some of it seemed to come back but it was tenuous. I came back with my hearing aids maxed out, I turned on my borrowed car not realizing how loud I had the music for the ride up and that there was music playing in the borrowed car. Driving back I was disoriented, not by new sounds as I had been a few years earlier, but by how distorted things sounded. I spent the rest of my spring break at work fixing computers, or in bed. I watched as the snow blocked off the walkways from my dorm to where I worked across campus. The snow lasted longer than usual and piled up to two feet on my small prairie campus.

I could only scoff when people spoke about “hearing the snow fall”. What other BS did hearing people make up?”

I finished college and went on to work in infectious disease research while my hearing slowly dwindled. I still loved music but I only listened to bass heavy music. It was my ritual to remove my hearing aids at the end of the day, turn on Jimmy Cliff and turned up the volume until the bass thumped in my chest like a second heart beat.

clare patterson hv story 3

I then went to graduate school and in the January before my April thesis defense date I received a cochlear implant in my right ear. I was activated on Valentines Day 2014 and was overwhelmed by sounds I had never heard before. My audiologist was pretty certain that I had never had normal hearing. I went back to my apartment and put on a DVD of my favorite TV show just to have some sound other than roaring tinnitus. I went to work on the final draft of my thesis (“The Utility of Autologous Stem Cell Transplant in Newly Diagnosed Type 1 Diabetes: Reversing Autoimmunity and preserving Beta Cell Function”). While doing statistics I suddenly laughed. I looked up and saw the TV with captions, as always, on. I then paused the DVD and went back and replayed the previous scene. I couldn’t tell the difference between voices or really what words they were saying but somehow I heard the joke while reading the captions and laughed again. I understood speech after nearly 10 years of profound deafness. It was awkward, helium sounding speech but I heard it! I decided to have speech I was familiar with in the background for all the hours I was awake. Soon, I could tell the difference between male and female voices and then between different female and male voices. I defended my thesis, after much practice with my advisor on how to say “statistically significant” and was able to hear the questions from my professors well enough to, with a bit of guess work, correctly answer their questions. I also presented my research at the annual “Research Day” and even in a large open space with abysmal acoustics, I was able to answer questions about my poster. It was by no means easy but I did it.

Now I’m in the midst of applying to medical school. I’ve worked in a busy urban ER for the past few years and I’ve fallen in love with Medicine. I wrote the piece below two years ago. I think it illustrates the joy of new sounds:

You know that thing people do when a lightbulb goes out? The unceremonious unscrewing of the bulb and the shaking of it next to an ear?

I honestly never knew why people did that, I remember doing it as a kid, hearing nothing and replacing the bulb with a new one.

But just now, a light bulb went out in that spectacular millisecond of a brilliant bursting flash.

I reacted as always, unscrewed the bulb and held it to my ear and shook it. Nothing, normal, you shake the bulb, I don’t know why, maybe to make sure it is dead? Who knows? People do weird things.

Then I tried my right ear, the one with a cochlear implant.

I must have looked like a maniacal child just standing there shaking a bulb and laughing.

It makes a sound. You guys, it makes a SOUND! A beautiful sound. A sound of distant church bells ringing out (The ringing of the bells. The bells, the bells.)

It’s a tinny sound, an echoey sound. You can hear the little tungsten coils bouncing around, you can hear when they settle at the neck of the bulb and that sound is different from the sound they make leaping off the sides of the rotund side.

Did you know that makes a beautiful sound? It does.

I’m still smiling. I heard something that I don’t think I’ve ever heard in my life and it was beautiful. It was mundane and everyday and boring to most, but it sounded so beautiful to me.

There is beauty in everything. Sometimes you just see it for the first time and sometimes you need to be surrounded by darkness to see light of a burned out bulb.”

I’m still D/deaf. A cochlear implant is a tool and an imperfectly perfect tool. I still sign when I want and occasionally use an interpreter but I can hear things I’ve never heard before.

 

Clare Patterson

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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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