‘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.

In the News: Congratulations to 2018 Anders Tjellström, Graeme Clark scholarship winners

Eight students were awarded the 2018 Graeme Clark and Anders Tjellström scholarships.

Last week, Cochlear Limted announced the winners of the 2018 Anders Tjellström and Graeme Clark scholarships. Congratulations to the winners!

The three 2018 Anders Tjellström Scholarship winners are:

  • Monica Pasqualino (Johns Hopkins Bloomberg School of Public Health) from Oceanside, New York
  • Elise Schiller (Trinity College) from St. Louis, Missouri
  • Carol Rynar (Canisius College) from Buffalo, New York

“Just as my Baha System opened a new world for me, I have become inspired to help others confidently navigate their life without anxiety, and to work to minimise the barriers that prevent them from engaging fully with their world because of hearing loss,” said Rynar, a Baha System recipient and an Anders Tjellström Scholarship winner. “This scholarship will help me extend this miracle of sound from me to the students I serve as a teacher.”

The five 2018 Graeme Clark Scholarships winners are:

  • Elaine Wright (Princeton University) from Tucson, Arizona
  • Tania Karas (Oxford University) from Palos Park, Illinois
  • Keenan Murphy (Manhattan College) from Bronx, New York
  • Hunter Orthmann (University of Iowa) from Iowa City, Iowa
  • Natalia Adriance (Notre Dame) from Napa, California

About the Scholarships
The scholarships, named after two pioneers of the hearing implant industry, recognize Cochlear™ Nucleus® Implant and Baha® System recipients in the United States and Canada who uphold the Cochlear ideals of leadership and humanity, and demonstrate high academic achievement. The Anders Tjellström Scholarship is named after Anders Tjellström, the research physician in the department of otolaryngology at the Sahlgrenska University Hospital in Sweden who collaborated with Per-Ingvar Brånemark, a pioneer in his field, to treat the first patient with a Baha device. The Graeme Clark Scholarship is named after Professor Graeme Clark, the inventor and pioneer of the multichannel cochlear implant.

Read more about the scholarships and apply here.

Read more about the 2018 winners here.

Following Shay’s hearing journey: from Softband to implant at age 11

Michelle and her daughter Shalynn, 11

Michelle and her daughter Shay, who wears a Softband.

By Michelle Robinson

When my daughter Shay was around one year old, I noticed that she was not reacting to loud noises like other children, so I decided to take her to have her hearing checked. Her family and I found out that she had moderate hearing loss in her right ear and that she had had it since birth. Although doctors did a hearing test when Shay was a newborn, we were not informed at the time that she failed it.

A short time after learning of Shay’s hearing loss, we made an appointment with our local ear, nose and throat specialist. The specialist confirmed that she had moderate hearing loss and nerve damage to her right ear. She needed a hearing aid. Shay received her first among many hearing aids at the age of two. In the years that followed, she has had several hearing exams, but due to her young age we were uncertain about what she was truly hearing.

When Shay was nine and a half I took her in for a routine hearing check, where we found out that her hearing loss was much more severe than we had thought. We learned she couldn’t hear voices and typical speech patterns. It turns out a normal hearing aid was not working for her at all.

My heart sank with this news. Shay not being able to hear out of her right ear was a huge concern: she was struggling in school because she couldn’t hear the teacher; it was difficult for her to ride her bike or play outside because she couldn’t hear when a car was coming up behind her.

The doctor explained to us the process of bone conduction, and he said he believed Shay would be a perfect candidate for the Baha System. We made an appointment right away with the Michigan Ear Institute. Doctors there confirmed that she has severe mixed hearing loss (a combination of sensorineural and conductive hearing loss) in her right ear, and that a normal hearing aid would not work for her. We discussed the Baha System and decided that it would be our best option.

After doing some investigating I learned about the Baha Softband, normally used for very young children. Shay has had the Softband for a little over a year now. It was like night and day: finally, she could hear! I’ve included a video of her hearing with the Softband for the first time with this blog. After a little more than a year and after seeing the difference it has made in her life, we knew it was time to replace the Softband. This December at the age of 11, Shay will have implant surgery to start her new life with the Baha Connect System. She is so excited to keep hearing better!

Michelle Robinson lives in Cheboygan, Michigan, U.S., and is the mother of 11-year-old Baha recipient Shalynn Robinson.

“The Baha 5 Sound Processor has given me back my life, my true passion”

Shelly Shannon is a first grade teacher from Tampa, Florida. She is passionate about her work and the teacher-student exchange.

“I remember the day I woke up and I couldn’t hear. It took my life away”, says Shelly, worried she’d never be in the classroom again. She recounts the difficulties of working as a teacher affected by hearing loss and the exhaustion she’d experience after a day struggling to hear her students.

As soon as she received her Baha 5 Sound Processor, Shelly’s life came back to normal. The sounds she experiences are clear and crisp, regardless of the situation.

“We sit on the porch, listen to the birds sing, and even through the sound of the rain in the background, I can still have a wonderful conversation with my husband”, Shelly says.

With the Baha 5’s Made for iPhone technology, Shelly can easily stream music, TV shows, and video calls directly to her sound processor. Other features include the True Wireless technology, which, according to Shelly makes hearing even better. The TV streamer, the Phone Clip and the Mini Microphone simplify the experience of sound with no strings attached.