Support for parents of deaf children

Although we personally don’t refer to deafness as a disability it can be seen as one and does come with its own challenges. Being a parent of a deaf child requires a little more time, patience and understanding of what your child may be going through.

First, coming to terms with your baby being diagnosed with hearing loss can be a highly emotional and stressful time. It can bring fears, questions and a sense of loss, especially if it comes out of no where, like it did for us and Harry. When we found out about Harry’s hearing loss, the first thing we did was turn to the internet. We headed straight for forums for parents of newly diagnosed deaf children to try and understand what this meant for us as a family. To say it helped would be an understatement. I immediately felt a huge sense of hope as I connected instantly to each person’s story. It was almost like we were part of an exclusive group.

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Their voice just faded away: My experience with sudden deafness

One day in April 2011, I lost all the hearing in my left ear between the time I woke up and lunchtime.

I was already severely deaf in my right ear and I had mild hearing loss in my left ear as a result of a hereditary condition called otosclerosis. I used a hearing aid in my left ear every day, but rarely used the hearing aid in my right ear, because I felt the volume level necessary to make it of use to me caused me to have horrendous tinnitus.

On this particular day, I woke up feeling a little woozy, and when I spoke, my voice sounded louder on my right side (my deafer side) than usual. For a few moments I thought a miracle was happening and that I was getting the hearing back in my right ear. (I once heard about a man whose hearing had been miraculously restored after travelling on a ski lift and I still hoped for a similar miraculous recovery.)

I could feel something at the base of my skull, which felt like icy cold water trickling down my neck. It then felt as though something was shifting at the base of my skull – a movement of some kind like when you see those worms that have embedded into someone’s skin – but this wasn’t a wriggling movement, more of a shift of a mass. It was undeniably scary, but I still went to work.

I started to get a really painful headache and I took some painkillers. I answered the phone to take a call from a colleague. I had an amplified phone with a volume control and I kept turning it up but to no avail: the caller’s voice simply faded away. To this day, I can’t remember who was on the phone or exactly what I said but I think I just kept saying that I couldn’t hear them.

I sent a text message to my husband and said I felt worse and that I thought something serious was happening and asked if he would take me to the emergency room. He came straight away and we dashed to the hospital. In the waiting room, my hearing further disappeared. I changed the batteries on my hearing aid twice before accepting that the last of my hearing had disappeared while I was waiting to see the doctor.  I felt like I was underwater or in a bubble, cut off from the outside world around me: it was like watching TV with the volume muted. Continue reading “Their voice just faded away: My experience with sudden deafness”

Cochlear implant surgery: Preparing yourself and your infant

One of the biggest considerations in our decision for Harry to have cochlear implants was, of course, the surgery. The process can take as long as 8 hours for bilateral implants and for a baby that is a very long time to be under anaesthetic.  There was no doubt in our minds that we wanted Harry to have cochlear implants so we knew the surgery was something we needed to get our heads around pretty quickly.

On the lead up to the operation I gathered as much information as I could about the surgery and what it involved.  I asked every question that popped into my head and Googled away until I felt satisfied that I knew what to expect when putting a young infant through this procedure. I asked how long the operation would take, if I could stay with him until he was asleep and how he would would feel afterwards.  I was also informed about an extra vaccination that Harry would need to have prior to the operation that I hadn’t been aware of before, as meningitis is one of the risks of this type of surgery.  Although the risk is very small it was good to know that he could have an injection to help prevent it happening.  There is some more information about the vaccination below.

I felt like if I knew as much as I could then I would be prepared for how I would feel during the surgery and how he would be feeling once it was done and he had come around from the anaesthetic, good or bad.

I found out that cochlear implants are routinely straightforward, typically taking two to four hours. The surgery is minimally invasive, and performed thousands of times per year across the world. In fact, children usually go home the same or very next day and resume their regular activities within a couple of days. Patients spend additional time in the preparation and recovery areas because the procedure is done under general anesthesia.

Some extra information from our cochlear implant provider, Advanced Bionics:

Cochlear implant candidates and recipients should consult their primary care physician and implanting surgeon regarding vaccination status for protection against meningitis. Meningitis is a known risk of inner ear surgery and candidates and recipients should be appropriately aware of this risk.

Because children with cochlear implants are at increased risk for pneumococcal meningitis, the Centers for Disease Control (CDC) recommend that they receive pneumococcal vaccination on the same schedule recommended for other groups at increased risk for invasive pneumococcal disease. Recommendations for the timing and type of pneumococcal vaccination vary with age and vaccination history, and should be discussed with a health care provider.

If you want more information about what to expect during a cochlear implant surgery and initial stimulation, you can download this PDF

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Harry gowned up for surgery

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Dating with hearing loss: Date spots, cuddling and lip reading in the dark

I got inspiration for this blog post from Rikki Poynter’s video, ‘Dating While Deaf.’ For those who don’t know who Rikki is, she’s a deaf YouTuber, a massive Pikachu fan, an advocate for closed captioning, and just an ordinary teenager like me!

As a person with hearing loss, there’s two sides to dating… being with a normal hearing person or with a deaf partner.

Personally, I’ve been in a deaf-hearing relationship before, and it didn’t work out. I wouldn’t say it was my deafness that ended it, as I am very capable in life with communicating, but I’d just like to point out that he could have been more understanding with my needs. (Like he didn’t get my attention when talking to me, or couldn’t be bothered to repeat what he said… so the whole thing didn’t work anyway.)

After this experience, I had doubts about whether I was ever going to be in a relationship again. I felt like all the boys my age were very judgmental and immature. At the time I also had this misconception that all deaf boys were signers, which worried me because I’ve never really interacted with deaf people before, so I felt that I wasn’t going to be able to communicate with them.

A few years ago, however, my views on dating changed when I went to a deaf young leader’s course, and met my boyfriend! Continue reading “Dating with hearing loss: Date spots, cuddling and lip reading in the dark”

Musicians with hearing loss: Q&A with Wendy Cheng

If you’re a musician, the probability that you’ll develop hearing loss is staggering.

Approximately 30-40% of pop/rock musicians and 50-60% of classical musicians suffer from some degree of hearing loss, according to the Director of Auditory Research Musicians’ Clinics of Canada. Even more suffer from tinnitus.

Once a musician develops hearing loss, many simply stop playing. Suddenly, they’re faced with a unique set of challenges that go beyond simply understanding and being able to interpret musical sounds. Negotiating the audio spectrum of music, adjustments of hearing aids or cochlear implants, and coordinating and harmonizing talent, skill and muscle memory are just a few of these challenges. Picking up where they left off before their hearing loss – or in some cases starting from scratch with a lifelong hearing loss – is daunting.

However, as a professional musician who developed bilateral hearing loss myself, I can tell you that many of us do and will do whatever it takes to continue their musical passions – for music is a soul pursuit not just a technical one.

As a professional musician who developed bilateral hearing loss myself, I can tell you that many of us do and will do whatever it takes to continue their musical passions – for music is a soul pursuit not just a technical one.

A colleague of mine who understands this well is Wendy Cheng, a violist with bilateral hearing loss since the age of 9 and the founder of the Association of Adult Musicians with Hearing Loss. AAMHL’s diverse membership includes musicians all along the hearing spectrum and for whom hearing loss is “significant enough to  impact how they play or no longer play their instruments and/or perform.”

I spoke with Wendy about her life and work.

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5 tips for teaching a deaf child to swim

Swimming is a fun and vital skill to have in life. Whether you’re on a beach holiday, hanging out at a local pool or fishing alongside a river, knowing how to swim gives you the ability to fully enjoy a hot, summer day, as well as keep you safe.

I’m not just saying this because I’m a lifeguard, but because swimming is my passion. I even wrote a blog about it!  I see all these stories on the news about parents not taking their children to swimming lessons, or even the parents themselves not knowing how to swim, making them unable to pass down the skill.

When a child has hearing loss, dealing with water can be stressful for parents. How can a swim instructor teach a deaf child to swim when hearing aids can’t be worn in the pool?

Well, they can! As a deaf lifeguard, I’ve found there are ways to teach children with a hearing loss about how to be safe in the water. Deaf children can achieve anything given the right support. I always encourage children to learn to swim at a young age, because it gives them time to develop and become more confident.

If you’re a parent of a child with a hearing loss, and are interested in them having swimming lessons, or if you have hearing loss yourself and never learned to swim, here are some tips:

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Why you should bring family or a friend to your audiology appointment

Last summer, an older relative of mine agreed to get her hearing checked.  She was accompanied by her sister, and after the appointment, I asked how it went.  I was expecting to hear all about her diagnosis and then recommendations for hearing help, but instead I got this report: Continue reading “Why you should bring family or a friend to your audiology appointment”

Making Music Again – A Grand Leap Forward with Hearing Loss

I recently wrote about performing music again long after I had assumed that those days were over. But I was convinced to try again after learning about new hearing aid technology (my Phonak Audèo V), research about the brain, hearing rehab, vocal training and dedication for lots of practice.

When I first started preforming again I chose familiar venues – a friend’s home and a local establishment – and then enlisted my own audiences through an e-mail newsletter, social media postings, and personal referrals, not knowing what might come from my performance. Each concert was full – about 30 people – and the response was warm and positive.

The first two performances were less than precise and the feedback that I received, albeit encouraging, indicated that more work was needed.

At first blush, it appeared that I did not account for other variables that might have improved my performance and more closely met my standards. After the second performance, in fact, I considered ending the test runs until I could be more “sure.”

But when is that exactly? And sure of what? I didn’t know. Continue reading “Making Music Again – A Grand Leap Forward with Hearing Loss”

Learning Sign Language with a Baby or Toddler

Learning sign language with your deaf or normal hearing baby

We started learning sign language as soon as we found out about Harry’s hearing loss.

Even though Harry has a cochlear implant and can hear our voices, we wanted him to know the basics of sign language for the future. Not only to better communicate with him, but also to be a part of the deaf community. He is still a deaf person after all, and he may very well have deaf friends who only use sign language to communicate.

Not only is sign language useful for children with hearing loss, but its also great for hearing children to learn as well. Even when they are very young, a baby’s motor skills and ability to make hand gestures are far more developed than their ability to speak, which makes it really very easy for them to learn the basics of sign language. You will be so shocked at how fast a little baby can start to copy different hand gestures, eventually realizing they can use their hands to tell you what they need! Imagine if your baby could tell you what they want via signing instead of screaming and wailing!

With help from our Teacher of the Deaf, Harry he had a whole range of signs he was using to communicate with us by the time he was around 9 months old.

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Switching on my Phonak CROS

Have you seen those YouTube videos of people having their cochlear implants switched on for the first time? Well, that’s just what is was like for me getting my CROS system ‘switched on’.

My audiologist hadn’t given me terribly high hopes for using the Phonak CROS. With my single-sided hearing loss, he’d said it could take anything from three months to a year to get the benefit. But, as soon as the hearing aids were switched on, I immediately looked to the left to follow what the audiologist was saying. He and the Phonak technician couldn’t believe how quickly my brain was able to process the sound. It was instantaneous. None of us could believe it. I was instantly getting a sense of sound coming from both the right and left ear. The sound sounded quite natural too – not like it was coming through microphones and being amplified: it just sounded ‘normal’. Continue reading “Switching on my Phonak CROS”