‘A whole world opened up to him’: Celebrating a new life of sounds this Autism Awareness Month

Parents of children with autism can have unique challenges in diagnosing and treating their children’s hearing loss. For Autism Awareness Month, blogger Jen B. from Oregon, U.S. has written about her 3-year-old son Xander’s hearing journey, from difficult diagnoses to helping him learn to wear his new sound processor.

You can follow Jen’s blog here on WordPress or here on Facebook.

 


“Xander!” “Xander!” “Xander!?”

But no response did I ever get from my son.

Xander, now 3, plays at school.

Xander, now 3, plays at school.

He will turn on a dime if he hears his favourite theme song start up. He’ll sing along in perfect pitch. And yet, dogs barking right next to him never make him flinch.

My son was born three weeks early with a collapsed lung and rapidly dropping sugars. Very soon he was transferred to a hospital with a Neonatal Intensive Care Unit (NICU). When I first saw him it was obvious that there was a slight deformity of his right ear. I assumed he had lain on it wrong in utero, and that it would work itself out.

The hospital gave Xander a hearing screening, as was standard procedure for all NICU babies. The nurse came in while he was asleep on me and checked his left ear first, because that’s always, even now, the ear he has to have facing out while snuggling.

Everything was fine.

The nurse tried twice to check his right ear and still seemed perplexed, because she couldn’t get the readings she was used to. Ultimately, she marked it as a pass.

It was only later we learned Xander’s hearing wasn’t normal.


My son has Autism Spectrum Disorder. He was diagnosed at only 18 months old. He is now 3 years old and considered non-verbal. He speaks, but not necessarily with what professionals would call, “purpose.”

Autism affects all forms of communication. Where a neurotypical child with a hearing loss might pull at their ear, say they can’t hear, or make some sort of gesture – something — we got nothing. It gradually became clear he needed to have his hearing assessed.

At about 2 years old Xander finally saw an audiologist. Autism can make a child both seek out stimulations (sensory seeking) and feel overwhelmed by them (sensory overload), so diagnosing hearing loss can be a challenge. In a room with all sorts of things making noise and lighting up, Xander wasn’t very cooperative. His tubes were clear, but the audiologist scheduled him for a sedated Auditory Brainstem Response (ABR) hearing screening. All the worst-case scenarios came into my mind during the scan, which felt agonisingly long.

Jen poses with 3-year-old Xander, wearing his Baha 5 Sound Processor on a Softband.

Jen poses with 3-year-old Xander, wearing his Baha 5 Sound Processor on a Softband.

The doctors learned Xander had conductive hearing loss in his right ear, and to learn more he would need a CT scan of his temporal bone. The doctors decided further diagnosis was not urgent and told me things like, “just speak to him on the left side” and, “in cars he probably won’t be able to hear you.”

About six months later Xander need an MRI for another issue, so we decided to have the CT scan done at the same time while he was sedated. We learned he is missing the third stapes, or stirrup – one of the bones of the ear – on his right side, a rare condition.

There is a surgery to implant a prosthetic stapes, but Xander’s major facial nerve runs where the bone should be, making the operation too risky. We decided instead to treat Xander’s hearing loss through bone conduction.


The sensory sensitivity caused by Xander’s autism made it hard for him to wear his first sound processor. The constant vibration against his head, the increase in noise and the strap around his head were difficult for him to tolerate. I would try bribing him, like I do with his glasses. “If you put it on, you can have a candy.” It didn’t help much.

When Xander’s trial was over, he received his Cochlear Baha 5 Sound Processor, and we both loved the way it looked. When I pointed out how cool he looked wearing it on his Softband, he beamed with pride and wore it for several days, for long stretches at a time – even to school!

Believe me when I tell you that I cried when I said, “Xander!” and he looked up at me.

He was able to hear the start of his favourite show in the whole world. He was mesmerized. He had never noticed all the nuances of it before he got his Baha processor. He could understand enunciations. He could hear his electronic toys, the ones that had never interested him before. A whole world opened up to him.

But for a child with autism, that can be really intimidating.

After an accident left him injured, Xander has become even more sensitive to stimulation, and sometimes getting him to wear his sound processor is nearly impossible.

Well, every day is a different day in the world of autism. While trying to take a photo of him wearing his sound processor, I was able to capture a whole video. He let it stay on while cruising around a department store today. I was so excited, and I hope tomorrow he’ll leave it on even longer.

For children with autism like Xander, treating hearing loss might not be a linear journey, but each day brings new opportunities for him to listen to his teacher at school, his toys, and even respond when I call him, “Xander.”

The opinions expressed in this blog are my own views and not those of Cochlear.


If your child is showing signs of hearing loss, use this tool to find a clinic near you.


Want to share your story, hearing tips or Baha advice with The Baha Blog? Let us know! Find us on Twitter at @TheBahaBlog, on Facebook at our page The Baha Blog or via email at bahablog@cochlear.com.

When losing something leads to something ‘wonderful’: Dwight’s experience upgrading to the Baha 5 Sound Processor

When losing something leads to something ‘wonderful’: Dwight’s experience upgrading to the Baha 5 Sound Processor

This blog was adapted from its original article on Hear and Now, a Cochlear Americas recipient blog. Read it here.


Dwight J. of Colorado streams a phone call directly into his Baha 5 Sound Processor.

Dwight J. of Colorado streams a phone call directly into his Baha 5 Sound Processor.

Sometimes losing something important to you turns out to be surprisingly “wonderful.” Just take it from Dwight J. in Colorado, U.S.

After a day of hiking, Dwight noticed he could not hear as well as he was used to. He reached up and discovered his BP100 Sound Processor was gone. He looked everywhere for it, but he realised he must have lost it while out on the hike.

Dwight acted quickly and called Cochlear to get a replacement. To his surprise, the representative told him Cochlear no longer offered the BP100. They introduced Dwight to the Baha 5 Sound Processor, and he knew he wanted an upgrade.

“It’s wonderful,” Dwight said after upgrading.

He said he especially likes being able to connect to his sound processor with Bluetooth, stream phone calls and stream radio directly to his sound processor while out on a walk.

Dwight also said he carries his Cochlear Wireless Mini Microphone with him wherever he goes. “I put it on whoever I’m talking to, if I’m in a loud situation, so that I’m able to hear them,” he said.

When it comes to continuing his journey as a part of the Baha family, Dwight seems thrilled.

“Cochlear culture oozes with a four-letter word: care,” he said. “They care about people.”

Dwight is a member of his local chapter of Cochlear Community, a Cochlear Americas program that connects Cochlear recipients in the U.S.


Want to share your story, hearing tips or Baha advice with The Baha Blog? Let us know! Find us on Twitter at @TheBahaBlog, on Facebook at our page The Baha Blog or via email at bahablog@cochlear.com.

 

World Down Syndrome Day and hearing loss: Celebrating children like Chloe

The following is a re-post of a guest blog from 2014 about Chloe, who was born with Down syndrome and lived with hearing loss until she was implanted with the Baha System at 10 years old in 2010. Chloe was 14 when her mother Jane wrote this guest blog to share with us the affect Chloe’s Baha implant had on her life. Join us in marking World Down Syndrome Day today (21 March) and celebrating children like Chloe.


It’s been a while since you last heard about Chloe. She is now 14, in year nine at senior school and even more of a little madam than when we last met four years ago.

Unfortunately Chloe’s health hasn’t been very good the past two years. She has had some major operations which have left her bed bound for weeks, and in and out of hospitals. Chloe has shown incredible strength and determination, both because that’s the type of girl she is and because she was able to communicate effectively with hospital staff and myself.

This is all thanks to her Baha sound processor. Chloe’s language skills and attention skills have flourished over the last four years; her vocabulary has grown, she is learning new words each day and she is definitely more attentive to those talking to her (apart from when she chooses not to!). This meant the hospital staff was able talk her through what was going to happen and she could indicate her pain levels and talk to the doctors.

I dread to think how she would have coped six or seven years ago, when her hearing levels were so low, and she hardly had any language. The world would have been a very lonely and scary place for her.

Chloe still loves drama and attends a very good secondary school that specialises in drama so she can devote more time to her passion. She is still my drama queen and a budding actress, dancer and musician. Obviously she is becoming a young lady and her life is changing. Developing language and communication skills has played a big part in this and will continue to do so.

My one aim for my daughter has been to become as independent as her disability would allow her. The Baha [System] has contributed to the success of this aim. She can order her food in restaurants. She can shop at the supermarket. She is also very good at being a typical teenage and slamming doors on me!

So am I pleased with the Baha [System]? Yes, my only regret is that I didn’t push for it sooner. I would recommend it for any parent or young person who needs it. Read the literature, speak to the professionals and if you feel it right go for it! It opens many doors and not once have we looked back.”

Jane lives in Birmingham, UK. In 2013 she won the Birmingham Parent of the Year Award for her tireless work with a special needs support group, as well as caring for her own two children who both have special needs.


Want to share your story, hearing tips or Baha advice with The Baha Blog? Let us know! Find us on Twitter at @TheBahaBlog, on Facebook at our page The Baha Blog or via email at bahablog@cochlear.com.

‘Lighting a candle in the dark’: Dennis reflects on his hearing journey with the Baha family

‘Lighting a candle in the dark’: Dennis reflects on his hearing journey with the Baha family

This blog was adapted from its original article on Hear and Now, a Cochlear Americas recipient blog. Read it here.


Sometimes life takes an unexpected turn and we find our “status quo” has been uprooted. When things are not going according to plan, it can be easy to feel lost.

But that does not mean it is the end. In fact, it may be a new beginning.

Meet Dennis, a Baha® 5 SuperPower recipient. He had normal hearing until 2012, when he went to the doctor because he suspected he had swimmer’s ear or inflammation.

Instead, Dennis was diagnosed with an acoustic neuroma— a rare, non-cancerous tumor that presses on the eighth cranial nerve leading from the brain to the inner ear. Common symptoms include hearing loss, tinnitus and vertigo.

Doctors estimated that his tumor had been growing for about 20 years.

“As the tumor grows, it takes up space, and by the time we found it, my hearing was down to 30 percent in the right ear—nothing usable,” Dennis said. “I could hear pings and single tones, (but) I could not understand what people were saying.”

Doctors told him his treatment options were surgery or radiation. Dennis opted for surgery in April 2013 to make sure the tumor was completely removed.

Six months later, at a post-surgery follow-up with his ENT, Dennis first learned about the Baha System. That was when everything changed.

“As a test, he put a Baha [sound processor] on my head, on a metal band,” Dennis recalled. “He stood behind me five feet or so and whispered words. When I realized it was picking up the sounds I was missing, I realised I’d like to have something to ‘harvest the sound’ from the deaf side.”

He had abutment surgery in December 2013, and by February 2014 Dennis was fitted with the BP110 processor. He said it helped him to become more aware of his surroundings.

“People couldn’t sneak up beside me on my right side, and I was aware somebody was there. That was basically why I did it,” Dennis said.

In March 2017, he upgraded to the Baha 5 SuperPower. Dennis said one of his favorite features is the rechargeable batteries.

“When I wore the BP110, I was replacing the battery every ten days,” he said. “The SuperPower takes rechargeable batteries, so it actually works out better because I can get a day and a half out of a rechargeable battery. With the cost of disposable batteries, it’ll pay itself off after a while.”

Reflecting on his journey and his advice for others, Dennis compared hearing loss to navigating in the dark. It’s a lot easier when you have a light.

“Light a candle, don’t blame the darkness,” he said. “What do you have to lose?”

For more information on the Baha 5 SuperPower, click here. To find a hearing specialist near you, click here.


Want to share your story, hearing tips or Baha advice with The Baha Blog? Let us know! Find us on Twitter at @TheBahaBlog, on Facebook at our page The Baha Blog or via email at bahablog@cochlear.com.

Creative solutions: Baha SoundArc replaces patient’s outdated, uncomfortable steel headband

First released only months ago, the new Baha SoundArc is already beginning to improve hearing experience for some Baha users. For one 82-year-old user in Belgium, the SoundArc proved to be an innovative solution to the daily discomfort of an outdated steel headband.

The patient, John (not his real name), was not able to receive a Baha implant, so he instead wore his Baha Cordelle II on a steel headband. The headband became uncomfortable, painful and even created pressure wounds on his head, so he rarely wore his sound processor and instead lived with his hearing loss most of the time. His audiologist even worked together with an orthopaedic technician to modify the headband and adapt it, but still the discomfort was too much for him.

When John upgraded his sound processor to a Baha 5 SuperPower in 2017, he was already able to hear a great improvement in speech understanding. Still, he had this uncomfortable headband that kept him from wearing his sound processor much of the time and improving his day-to-day hearing experience.

A patient wears a Baha 5 SuperPower sound processor on a SoundArc.

A patient wears a Baha 5 SuperPower sound processor on a SoundArc.

The turning point came in November of 2017, when the audiologist was able to offer John the new SoundArc and attach to it his Baha 5 SuperPower. Easier on the skin and the eyes, he said it was both profoundly more comfortable and much more attractive than his old steel headband.

The audiologist, very happy with the new solution, said, “This is a textbook example of how a Baha sound processor fitting should be!” John hopes to get adjusted to wearing his Baha 5 SuperPower for longer periods of time now that he has a creative and comfortable solution.


Want to share your story, hearing tips or Baha advice with The Baha Blog? Let us know! Find us on Twitter at @TheBahaBlog, on Facebook at our page The Baha Blog or via email at bahablog@cochlear.com.

Happy World Hearing Day 2018 from The Baha Blog!

Today, 3 March, is World Hearing Day. Everyone deserves to hear what the world has to offer. Help your loved ones hear the difference today at hearingmatters.info and share the video!

Join the conversation on social media with hashtags #HearTheFuture, #WHD and #HearingMatters.

Happy World Hearing Day 2018! #HearTheFuture

Happy World Hearing Day 2018! #HearTheFuture

Tech features make Baha 5 series easy to love; now it’s time for an upgrade: guest blog

By Tom de Beer, Netherlands

Cochlear Baha System recipient Tom de Beer. Submitted photo.

Cochlear Baha System recipient Tom de Beer. Submitted photo.

Some people have said to me that with a disability, following your dreams is so much harder, if not impossible. But boy, did I prove those people wrong.

My name is Tom de Beer – I’m a 21-year-old IT student from the Netherlands, and I also blog about tech. I currently hold two diplomas from community college: one in IT Support Engineering, and one in Network Engineering. I am now continuing my studies in IT & Business at Fontys University of Applied Sciences. I am also the Editor-in-Chief at Dutch Tech Blog, where I write about Apple and other major tech companies like Microsoft, Intel, Synology and more. I have worked with different PR organisations to improve the quality of my content as well. I really enjoy what I’m doing in my life. But I won’t lie. It hasn’t been very easy to get where I am right now.

I would like to share with you how I’ve managed my hearing loss, going from near-deafness at birth to bone conduction treatment and the Baha 5 Power upgrade I will receive this summer.

I was born with severe to profound hearing loss on both sides. I did not get hearing aids as a baby because it took a few years before doctors found out what caused my hearing loss. From that point I was given the benefit of electronic devices that have helped me hear.

My first hearing devices were the so-called ‘Behind-the-Ear’ (BTE) hearing aids, which I got when I was two or three years old. And they did help me to communicate with people. But I often had issues with them, one of them being that the ear pieces got constantly ‘blocked’ by an excess of ear wax my ears were producing.

I knew I wanted a solution that was more discreet. Being able to wear hearing devices without them being 100% visible doesn’t make me feel as ‘paranoid’ anymore about what people might think of me. I know what you’re thinking: “You shouldn’t have to feel ashamed of your hearing loss!” And believe me, I’m definitely not ashamed of my hearing disability. In fact, I am proud to be sharing my story.

Fast-forward to 2012, I had my annual hearing test and my audiologist mentioned something called the Cochlear Baha System. I had no idea what he was talking about. He explained to me that what made it different is the process of bone conduction: how sound travels through the bones of my skull to my cochlea. It sounded very interesting. So I went looking for more information, and finally decided to ask my ear specialist for his thoughts about it. He said a Baha System could really help improve my hearing experience. After some consideration, I finally went for it and decided to get an implant and abutment for the Baha Connect System on my left side.

In 2013 I received my very first bone anchored sound processor, after having tested two of them. I wasn’t too happy with the first one. The sound did not feel natural to me and the device felt bulky and heavy. The second one, a Baha 3 (BP110) Power was a different story. I immediately started hearing sounds I wouldn’t have heard before – for example tapping on the desk with your fingertips. I also heard conversations in certain situations better wearing this device. As exaggerated as it may sound, the experience felt like a miracle.

Two years after my first surgery, I went under the knife again to get a second implant on my right side, because I felt like I was missing something. I got the Baha 4 Sound Processor. What I found cool about it was that it supported some accessories that allow for connecting with your mobile phone.

Bilateral recipient Tom de Beer wears his Baha 3 Power on his left side and his Baha 4 Sound Processor on his right side. Submitted photo.

Bilateral recipient Tom de Beer wears his Baha 3 Power on his left side and his Baha 4 Sound Processor on his right side. Submitted photo.

Late 2017, I realised that it had been 4 and a half years since I received my first Baha processor, and it was time for an upgrade. I read about the Baha 5 family of sound processors, and I learned that they had ‘Made for iPhone’ technology. Obviously, as a tech nerd and a big Apple fan I absolutely needed that one. So I contacted my audiologist to ask him about my options. He told me I couldn’t upgrade until July, but he proposed trying one out for a few weeks. And of course I wanted to do that!

As I am writing this, I am wearing the Baha 5 Power on my left side. It is a phenomenal device. Of course, the sound quality is great. In fact, voice quality has notably improved over its predecessor. For me, another major compelling reason to upgrade is that ‘Made for iPhone’ technology I just mentioned. Setting it up is very easy, and everything else is incredibly seamless. Audio is automatically streamed to my sound processor, and I can even use my phone as a microphone. Being able to see the battery percentage of the device is a nice touch as well. Using the Baha 5 Smart app I can even adjust the low and high tones. I appreciate that bit of customisability.

But how is my daily experience? Let me start by saying that the obvious struggles are there. There are lots of moments where I have no idea what somebody is saying, and I don’t dare to ask them to repeat something. Especially if it has to be more than a few times. Luckily, in most situations people show respect for my disability and try to make me feel as comfortable as needed.

My parents, family and close friends have always supported me in a way that one might dream of. And not just when it comes to my hearing loss, but also in my ambitions to become whatever I want to become. That is also where I have proved many people wrong: that in spite of my hearing loss I still got where I wanted to be. And I haven’t even finished yet!


Tom de Beer, 21, is a tech student and blogger from the Netherlands. You can find Dutch Tech Blog at dutch-tech.nl.

Want to share your story, hearing tips or Baha advice with The Baha Blog? Let us know! Find us on Twitter at @TheBahaBlog, on Facebook at our page The Baha Blog or via email at bahablog@cochlear.com.