March 2016 goodtoknow.co.uk

A toy manufacturer is struggling to keep up with demand after designing a 'deaf' children's toy with a cochlear implant.

The Tinker Bell doll, modelled on the character from the classic Disney film Peter Pan, is no ordinary fairy as shown by her hot pink hearing aid. 

Toy company #ToyLikeMe was set up by founder and journalist Rebecca Atkinson to 'celebrate disability in toys' and encourage the global toy industry to better cater to the estimated 150 million disabled children worldwide. 

Before the adorable idea could get off the ground it needed crowdfunding, even to finance the modest kitchen table production line that Rebecca had in mind.  However, it has proved more popular than Rebecca could have imagined and the first batch of Tinker Bell dolls sold out within five minutes.

 

 

 

 

Rebecca said; 'As someone who had grown up wearing hearing aids, I remembered firsthand how it felt to be a child who never saw themselves represented by the mainstream and what that can do to the self-esteem of child with a disability. 'I wanted to change this for generations to come and start to get global brands to include representations of disability in their products.'

 

Complete with a small star switch and a magnet, Tinker Bell's cochlear implant looks very professional but Rebecca wants to encourage parents to make their own and is even willing to give away her business secrets. The entrepreneur said; 'It's important to stress that this is a kitchen table production, not large scale manufacturing with Disney. If anyone is feeling crafty, you can always create your own. We use FiMo, string, and spray painted popper studs!'

 

#ToyLikeMe isn't just focusing on deaf toys, they also have teddy bears with prosthetic legs, dolls in wheelchairs and even a spiderman with one leg. 


 

They aren't the only company introducing more diversity in their toys in 2016, as Lego made announcements for a new figure in a wheelchair. In February the global toy company unveiled it's first ever wheelchair-using toy at the Nuremberg Toy Fair.

 

 

 

 

 

 

Sept 2015 People

 

For most of their lives, the wind blew silently through the trees at the home of Larissa, Bethany and Kaitlin Anderson in Highland, Utah. Birds didn't sing, dogs didn't bark and a thunderstorm never came with loud claps or the pelting sound of heavy rain.

 

Then after never knowing the joy of full sound, the three Utah sisters received cochlear implants at Primary Children's Hospital in Salt Lake City, allowing them for the first time to hear one another's voices, communicate with friends without reading lips and enjoy their favorite music, unmuffled and vibrant.

From left: Bethany, Kaitlin, Carl, Julie and Larissa Anderson.

"Our lives have changed dramatically for the better," says Bethany, 15, who along with Larissa, 17, and Kaitlin, 9, was born with a genetic hearing loss called enlarged vestibular aqueduct syndrome, a rare ear disorder that grows progressively worse year by year. 

"It was so frustrating not to be able to hear what was going on around me," Bethany says. "Even with a hearing aid, I always had to tell people to repeat themselves over and over again." 

 

The sisters' journey into silence started with Larissa, who hit her head at age 4, triggering a substantial hearing loss, says the girls' mother, Julie Anderson, 41, a homemaker. 

"Her hearing was suddenly gone and then at the same time, when Bethany was 1, we noticed that she wasn't developing speech. We had them both tested and were shocked to learn they'd been born with this genetic syndrome." Both girls had been using hearing aids by the time Kaitlin was born and diagnosed with the same ailment. Although hearing aids helped the girls to understand their teachers in class, all three continued to suffer escalating hearing loss. "It started going downhill for all of them, and it got to the point where they couldn't even hear with the hearing aids," their father, Carl, 41, an information security consultant, said. "We knew that something drastic had to be done." 

 

After a trip to Washington D.C., in 2014, Larissa lost what little hearing she had in her right ear after a change in cabin pressure. The Andersons then looked into giving their daughters cochlear implants. After finally getting the green light from their insurance company, the girls underwent two-and-a-half hour surgeries, one after another, on the same day. "Doing cochlear implant surgeries on three siblings on the same day is extremely rare, but they all met the candidacy criteria at the same time," says the girls' surgeon, Dr. Richard Gurgel of the University of Utah School of Medicine.  "There is so much more to hearing than just hearing, it affects our ability to communicate and connect, our emotional state and even our cognitive functions. The implants will have a major impact on helping these sisters reach their full potential."

 

   

Bethany, front, and Kaitlin after their surgery. Their father, Carl, is shown in the background.  Julie holding her daughter, Kaitlin, before surgery.

 

Two weeks after their surgeries, Larissa and her sisters went to an audiologist's office to have the devices turned on, allowing them to communicate verbally for the first time.

 Although it will take time for the girls' brains to adjust to the implants' "robotic" signals, "this is going to make such a huge difference," says Larissa, who documented her journey on YouTube. Most people take their hearing for granted, but we never will." The sound of silence, she says, "will never be missed. There won't be any more lip-reading or having to read the subtitles on television. We're going to live life to the fullest now."

March 2016 Sanibel Captiva Islander  CaptivaSanibel.com

      

Beverly Biderman of Toronto, Canada had the task of trying to live a normal life while being deaf, as well as keeping that knowledge from others. Biderman started losing her hearing at an early age due to hereditary hearing loss, which starts out in childhood and progressively worsens over time. But Biderman was able to overcome her deafness to lead a successful life and by the time she was 45-years-old, she was hearing for the first time as an adult with her cochlear implant. Her journey through being deaf and now being able to understand speech again, is outlined in her book, "Wired for Sound: A Journey into Hearing," which incidentally was an inspiration for a new opera being written entitled "TMIE, on the threshold of the outside world.” Biderman unfortunately was passed down the hearing loss gene by her father, who was also deaf, while her other two siblings never were affected.

 

"You could tell I heard some things as a child, because I could speak," Biderman said. "But everyone thought I had a speech problem, because I had difficulty reproducing sounds I couldn't hear, like 'S', 'Ch' and 'T'. There also wasn't any treatment for hereditary hearing loss."

Beverly Biderman is the author of “Wired for Sound: A Journey into Hearing.” 

When she was nine years old, her parents brought her to the doctor, where he diagnosed Biderman with nerve deafness.

 

They sent her downstairs to be fitted with a hearing aid, but ultimately, that didn't to work.

"My parents had a tough time processing it," Biderman said. "People in my family didn't have children because they were scared they would pass on the hearing loss to their kids."

Her mother told Biderman to not tell the teachers in school, so she sat up front of the class so she could read their lips during lessons. "I got into trouble sometimes because I didn't know the teacher was talking and I kept on talking," Biderman said. "Once, they sent me into a speech therapy class and put on a record to give tips on how to correct your speech. I couldn't hear it, so I just watched the record go round and round. I hope today, children don't pick up the message that deafness is something to be ashamed of."

 

Biderman became an avid reader, digesting any word on paper which she could find. She scored high grades in college and became a computer system analyst. She was still guarded about her deafness throughout her life, until she started reading up on the process of cochlear implants. She had her first surgery when she was 45-years-old.

 

"I only told people I was deaf when I got my cochlear implant, I felt like I was coming out of the closet." Biderman said. "I do see (deafness) as a handicap, even now," Biderman said. "But I am proud of what I have achieved."

What Biderman hears are electronically sounding words. It was a task learning what words meant after she was "turned on" after her implant surgery. "I listened to audio books for hours and hours, while reading along with it in a book," Biderman said. "Eventually, through the process of matching with the word on the page, I could make the association."

Early in the process, Biderman could only hear buzzes and beeps and also had to learn what other sounds were. "I didn't know what it was when a dog walked across the floor and its claws would scrape against the floor," Biderman said. "I didn't know plastic bags made a crinkling sound, either. It was confusing."

 

Biderman penned her life into her book "Wired for Sound: A Journey into Hearing", which led to the birth of an opera based on her memoir. The premiere of the opera was supposed to have been Feb. 25, in Lisbon, Portugal at O'culto da Ajuda, with the soprano singing the role of Biderman being Marina Pacheco. Ironically, Pacheco came down with the flu and eventually an inner-ear infection, thus postponing the premier to a later date.

 

Biderman's book can be purchased online at Amazon.

So you now have your new cochlear implant. After waiting a few weeks for the surgery site to heal, you have your first ‘mapping’ session, the process of the implant being made active and adjusted for you. We have all seen or read about the experience of a child, for example, hearing for the first time. The impression given is that the new implantee now hears everything and recognises the sounds coming through. This is completely WRONG. This impression is very misleading and often gives rise to unrealistic expectations by both the implantee and more importantly, their family and friends.

I can tell you how it has been for me and I suspect, the majority of cochlear implantees. The audiologists who work with you in this process do every thing possible to explain how it is likely to work. Getting used to and adapting to a cochlear implant is very much an experiential thing - no hearing person is going to be able to adequately explain what actually happens. Every individual is different of course and the level of progress you make will vary.

I have been going deaf since I was a baby and thanks to much hard work, over decades, I have developed a significant level of skill that has enabled me to communicate effectively in the hearing world. Naturally, I assumed that I would do very well with my new implant - which I have - but only after months of ongoing work and effort on my part.

The first impression I had of the impulses being transmitted to my brain was of noise, just that, with no clue of what I was hearing. For a start, your brain is subjected to what is really a bombardment of sound, none of which makes any sense. Your head is now filled with ‘noise’ and it can take a huge toll on you, mentally and emotionally. For me, it was about 2 months before my brain began to convert all this new sound into meaningful words and even then it was very patchy. I was advised that it usually takes about twelve months for full integration and that was indeed my experience. In essence, the brain has to learn a whole lot of new things and this can be very disorienting.

The implant contains 22 electrodes which transmit sounds in the high, mid and low frequencies. Compare this with the normal number of hair cells in each ear (cochlear), anywhere from 17,500 to 23,500. So an implant is simply not capable of transmitting the full range of sound frequencies that a normal hearing person can receive.

In my case, the high frequencies had been missing for a very long time and I imagine my brain had even forgotten what these sounds were like, let alone know what I was now hearing. It is interesting to me that the very first sound I was able to clearly identify, was the ticking of a clock. Now it seems that I cannot avoid hearing ANY ticking clock!

I am enormously grateful for my cochlear implants. I was recently fitted with a second one, just on two years after my first, so am going through the same adaptive process. This time around my brain seems to have the ability to recognise the new sounds very quickly, which is a huge bonus. It will still take 12 months for full integration. Like all implantees, it is a gradual process of adjusting the sound thresholds and bit by bit, turning up the sound levels in the speech processor. This is something that cannot be rushed, as the auditory nerve has to gradually get used to the new stimulation. Otherwise it can be too uncomfortable if too much is done too soon.

Even with the implants it still takes a lot of mental effort and concentration to be able to function in the hearing world and that will always be the case. The cochlear implants help, but they cannot replace our natural hearing.

Pat. Mitchell