Category Archives: accessories

Cochlear N6 demand exceeds Australian Hearing budget- new policy for children’s eligibility for upgrades

Hearing devices rationed- SMH article 7.04.2015

The government authority that provides hearing devices is rationing access to technology upgrades because its budget cannot meet unprecedented demand for the latest speech processor.

Harry has just brought home his new N6 processors but not as a result of his Australian Hearing upgrade he should have been eligible for after his N5 processors went out of warranty this month.
Australian Hearing used to provide every child with Cochlear Implants in Australia under 26 yrs a new processor after the processor was 3 years old. This was the period of warranty given by Cochlear Ltd and therefore the Federal Government through their agency Australian Hearing created a policy to ensure each child user had a processor under warranty.
It seems that the increase in technology from the N5 to the N6 was so great that everyone wanted the new processor. Probably the wireless capabilities in the N6 and the new SCAN program( an automatic monitoring of background noise) were features that made it worthwhile to request an upgrade.
Many families were waiting patiently to get their new processors while Australian Hearing was working out how to get around the lack of funds to give everyone out of warranty or who had broken their old processor beyond repair, the new N6. The policy was revealed a fortnight ago and made retrospective, declaring only children under 5 and between 25-26 yrs are now eligible to receive the upgrade after 3 years. Users outside this age group have to apply through their personal private health cover for the new processors.
This is not possible for a majority of families with children who are deaf and require cochlear implants. I understand a group of parents has started lobbying the Govt to reassess the policy and I urge you to contact your Local Govt to do the same. The more voices, the more chance of change. At least the kids going to school should be covered as the new technology used everyday in schools means the old processors will be outdated before too long and those kids will miss out on vital learning.

If you require more information on your child’s eligibility please contact your local cochlear service centre or CIC.

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Keith Richard has the best ears for a pair of CI’s


Our families obsession with seeing the Rolling Stones live has emerged again .
They are currently finishing their Australasian tour and so I get the chance to review Keith’s choice of headband. Scrutiny of his headwear on this tour made me realise he also has the perfect ears to wear a pair of CI’s.
Perhaps after 50 years of playing guitar live he may need the assistance of cochlear implants to improve his hearing, as rock concerts are high on the list of circumstances that can impair your hearing for those of us with all the correct hearing structures

november 2014 Puffing Billy Train

But the time has come when the headband is no longer mandatory . Harry’s recent addition of glasses has meant there is just too much headgear for a little kid. When you factor in hats and bike helmets poor Harry is so top-heavy he couldn’t balance even if his vestibular system was functioning well.
On a few of our over 30 degree Spring days it became obvious that the headband was not working well with the glasses. Sweating like a gypsy with a mortgage, all fogged up so he couldn’t see , there was just too much gear to manage. Also the weight of the battery and processor over the top of his ears and the glasses arm together were almost bending his ear in half-  And I had been so proud of his flat ears – secretly I had loved the fact that the headband held his ears back and stopped them from curling!  The glasses have a plastic frame with no screws so that they do not break when placed in contact with the pavement at high speed- ie the face plant . At the back they are held in place with an adjustable elastic band so as to ensure stability and to stay in place at all times. The glasses are made by a company called Mira Flex.   Demo Video here.   I am so pleased with this choice of glasses as the elastic also serves to hold the CI cable in place so if the magnet drops off the processors are left dangling under the glasses elastic.

Harry has taken to wearing them like a duck to water, which is ironic as we spent 6 months delaying getting them as thought it would all be too much for him ( and us). Without a doubt they are really helping and it is mainly for long distance and astigmatism. An astigmatism ” usually occurs when the front surface of the eye, the cornea, has an irregular curvature. Astigmatism is one of a group of eye conditions known as refractive errors and is very common. Refractive errors cause a disturbance in the way that light rays are focused within the eye. Astigmatism often occurs with nearsightedness and farsightedness, conditions also resulting from refractive errors. Astigmatism is not a disease nor does it mean that you have “bad eyes.” It simply means that you have a variation or disturbance in the shape of your cornea”.

Apparently 1 in 3 children ( not just deaf children) will have to use glasses at some point in their childhood.  With a deaf child you are looped into seeing a Ophthamologist at a very stage. The reason for this is that there are some extremely rare diseases out there that link the eyes and the ears.  An Opthamologist can ensure that they are monitoring the health of your childs eyes as they grow and will look out for any signs of alteration in the retina. So if you are the parent of a profoundly deaf child and haven’t yet been to see an ophthalmologist, please consider it. To look for one start with your local Children’s Hospital as they will have more experience with profoundly deaf children and their needs. I am only labouring this as the glasses have had a huge impact on Harry’s general ability to compensate all round.

The most obvious change since Harry  started wearing the glasses is his balance. He seems to be so much more in control of his movement and the teachers at his kinder have seen a marked improvement in his eye contact when being spoken to and speaking to others. This is a funny one, as a lack of eye contact can often be interpreted as a sign of Autism. I have said it before , and this is my non medical opinion only,  but it is not always  the case- I am sure with Harry it was just about the fact he had so much information to process and his eyes were working so hard to help him balance and compensate for the reduced hearing capacity , that they were too busy to look at people directly when spoken to.


So now we have a son who is almost too cool for school. His mates at kinder have returned home requesting to have glasses like Harry and with the removal of the headband he somehow seems more grown up.

In 3 weeks time he will graduate from The Toddler Room at school ready to embark on 3yr old Kinder in 2015 . A proper classroom with 22 kids and only 2 teachers which will be a huge step from the 10 kids and 4 teachers he has had for the last 2 years.  He is so ready and I am so nervous. There are so many things to consider and prepare for. The use of the FM microphone will be so crucial to ensure he gets access to all the speech from the teachers. But what about hearing what the other kids say…….I can’t even imagine how he will manage to pull out the words of his peers from the clutter of noise that 22 children will create in one room and manage to know what they want to play with him . There is no doubt he will manage it and use strategies we can’t even comprehend to ensure he doesn’t miss out. He will commit the routines in the room to memory as fast as Clark Kent  changes to Superman  in a phone box . But for now it is nearly Summer and he can look forward to enjoying being free on the beach.

IMG_1144 IMG_1145



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If we were meant to pop out of bed , we would all sleep in toasters- A lesson in sleep for CI toddlers

sleeping baby

sleeping baby

In the last few months so much has taken place that I have wanted to write to you about but I haven’t found the time.

Back in the day, Harry had a decent afternoon nap which meant if I could possibly stop myself from loading the washing machine or sorting the clean laundry I could sit at my computer and churn out a Blog entry. But alas, no more. He actually hasn’t had an afternoon sleep really since we went to London this time last year. He still sleeps at Kinder but I have had to restrict it to one sleep cycle of 45 mins. only as otherwise it massively impacts on when he goes to bed.

This leads me to the first part of my story- SLEEP

At the beginning of the school year we decided Harry was too large for his cot. The base was bowing under his massive 16 kg weight and when he didn’t want to go to sleep he was now able to scale the bars and fling himself out, usually requiring a Chiropractic adjustment on landing. 
So a small purchase of an Ikea toddler bed was thought to be the best transition to freedom. At least he could manage to safely get himself in and out of it without my fear of falls everyday. His delayed vestibular development effects how Harry understands where his body sits in space, so getting him to maneuver himself up and down from a normal single bed seemed to me to be adding an extra layer of processing he may be better off without at this point.


In hindsight, this new freedom was probably the cause of the fast path to no sleep. The first 4 weeks in the bed went perfectly and I was congratulating myself on how he was able to adjust to change. As an aside, the reason for this thought was that often when various Doctors or Specialists are assessing you, they could start to direct their assessments to a place that is in “ The Spectrum”. Seeing whether a deaf child is one that also has social issues or behavioral issues, is a common discussion and one for another Blog post… Remind me about it later.


It started to go pear-shaped when daylight savings was approaching and Harry realized that in the time he was in bed and before he fell asleep it became progressively darker outside. He would lie staring at the window and wouldn’t let me put the blinds down. Then he wanted the main light on to read with, which as you can imagine sent me crazy as there is no way you can fall asleep with the ceiling lights on. What we thought was a little fear of it getting dark escalated into him refusing to go to sleep – AT ALL.


The compliant boy, who used to read until he dropped off, now clambered out of the bed and started pulling everything in the room out of its position and onto the floor to play with. He was over stimulating himself and using whatever was in the room to aid him. The only logical step was to remove these things from his room, which I did one by one until there was only his bed and the change table left. He also used to bang his feet against the wall, which I guessed was to feel the vibration and allow him to work out where he was. Then he started to climb into the shelf of the change table with a doona and pillow and try and sleep there, as it was the only thing left besides the bed… Obviously sending me a message he would sleep anywhere except the bed.

I was really unsure what was going on at this point and was it was now taking us until 11pm to get him to settle.  The level of noise he was generating so late at night was impossible to tone down as he was used to having no CI’s on at night. Often the only way to get him to sleep was to put him in the car and drive until he fell asleep to the motion. I also threw in some of the Super Nanny tactics I had seen on TV which were meant to ensure he stayed-put on the bed. The reality was a major workout for me, lifting a 17kilo boy back onto the bed hundreds of times a night. If you picture the scenario: an overtired, worked up, small child who was unable to communicate to us his needs and we were unable to communicate verbally what he was required to do. My challenge in communicating with a 2.5 year old who refused to sign, refused to look you in the eyes and was without his connection to sound resulted in hours of getting physical.


Through his stubbornness to succumb to sleep, he progressively became more and more overtired and with that he became over – sensitive or technically, hyper- defensive to touch. This meant I couldn’t hug him or stroke him or use any sensitive physical means to make him feel secure in the environment he was becoming stressed in. He started to display many of the signs shown by a child with Sensory Processing Disorder ( and in my own sleep deprivation I started Googling…. Never a good thing.

His behavior in the day was a direct result of the stress of getting to sleep at night.   Dan and I had not eaten a hot dinner together, the girls hadn’t been able to get to sleep in their room next to his before 10 pm due to his noise and we couldn’t have anything resembling a social life for more than 6 weeks- it was time to call in the BIG GUNS.

In floods of tears at the GP’s clinic we were given Melatonin and a sedative 6 times stronger than Phenergan to put him to sleep. The idea was to allow him to fall asleep aided in his bed in his room rather than the car and eventually he would forget the scary associations he had developed with his room and night time and only remember the current calming sedative induced sleep from the antihistamines.

The melatonin was to try and get his body clock back on track and bring his circadian rhythms in line so he was going to sleep when he was tired.  ( There is not much research in to the long-term effects of using melatonin on kids but short term there is no harm. It seems Pediatricians have used it for kids that have autism, ADHD and other special needs for the last 20 years. I can also tell you that in this time when I did not know what to do, I reached out to the Facebook page I belong to “Parents of CI kids”. The most common response to my call out for help was to try melatonin. It transpired that I was not alone in this sleep-deprived world of a nearly 3-year-old deaf child with CI’s. It appeared to be a common occurrence at this age, there were other parents around the world who had also experienced similar sleep disruptions from their CI kids. I love this site and if you are a parent of a CI kid and don’t belong I highly urge you to join up.

It took a good further 2 months to get him back on track. I also sought the advice of a “Sleep Consultant” on the referral from our Pediatrician. It was at the Epworth-Monash Sleep Clinic in Melbourne (Dr. Margo Davey) http:/  ,  a Doctor with enough experience to see through the smoke and mirrors of the situation and who gave me the biggest telling off I had in many years. Interestingly she told me that I needed to forget Harry’s deafness and focus in on his behavior, which was that of a standard 2 1/2 year old boy ruling the roost. Yes, he may have some issues relating to not hearing at night but essentially when she striped back our routine, she felt he was running the schedule, not us. I can laugh about it now, as that short consultation allowed me to remember that I had been a mum twice before and probably not perfected sleep routines either time. But the rules of engagement I applied to very articulate 3-year-old girls to get them through this period just didn’t make the grade with Harry. He needed routine and no deviation and me to be firmly in the driving seat.

We are still not back to where we were at the beginning of the year but we are in a place we can manage and it works for us all. I am in the room till he falls asleep and we are still using the melatonin but in such small doses it is negligible . He still has the blue light on all night and some nights will ask to fall asleep with the bedside light too. He is sleeping all through the night for 11 to 12 hours so I actually don’t think I can ask more than that of him at this age.. He will now also let a babysitter or even his big sister put him to bed and read to him until he can no longer fight the heavy eyelids.

There is no doubt that on this journey you can get so embroiled in the struggle for normality that when something fairly normal takes place you are unable to see it for what it is. I have said before that we are on a rollercoaster with Harry and it goes at quite a speed. We don’t have the luxury of time to reflect and ponder the best move in our chess game; we have to be instinctive and practical. This episode really taught me that it is easy to lose my natural instinct amongst the labels and the instructions for Harry. But it is still there if I dig deep enough and get enough sleep!

Next BLOG I will discuss Clinical Assessments

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Nucleus 6 FDA Approval

We knew it was coming and here it finally is.. the latest Nucleus model with wireless capabilities.
There is no news on a date for Australia as yet but any thoughts on the whether you will still need an accessory port if everything is wireless??


I look so I can hear....

Nucleus 6


Image source: Nyhetsrummet

The FDA has given approval to Cochlear’s Nucleus 6!

Source: FDA

Cochlear Nucleus 6 system

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making a splash- hearing in the bath

July 2013

July 2013

I remember when Harry was first implanted that the Cochlear Implant Clinic made a strong recommendation that the processors should never get wet. A few months ago, probably around the time the Cochlear aqua accessory was launched, they revised their thoughts on this and talked to us about keeping the processors on in the bath as there were many benefits to hearing while bathing. The Nucleus 5 processor was in fact “splash proof” , they said. Well, I was game to try but splash proof I think must relate to sensible, controllable adults rather than excitable under 2-year-old boys hearing the sound of water in the bath for the first time.! They don’t really correlate. At the time I kept them on with my fingers crossed they would stay dry but alas it resulted in non stop splashes that required more than 1 towel to mop up afterwards. With a swift hand, I whipped off Harry’s headband and popped it in the Breeze Dry and Store product we got as part of our kit. To be honest this is the only time I ever use this gadget to dry off the processors after a bit of over zealous water play… The joy of living in Melbourne I am sure it gets used a lot in the North of Australia!

Harry is somewhat older now and

recently I have noticed he is saying “No” quite defiantly if I take his headband off and he is wanting to hear.

I love this so much as it means , hearing is his preferred status

Can I say that?
With this in mind, I have started leaving the headband and gear on for his bath. I draw up a very small bath ( as in not more than a few centimeters deep) in the hope the less water, the less splashing. Yes I am optimistic! But I am also noticing since we have returned from our holiday that he is listening and responding much better to instructions. I now say ” small splashes only please Harry” and demonstrate what I mean by a small splash ( so not the Alice or Tess version). For a short period of time it works and I can keep him playing in the bath with sound. Really this is a revelation as I always thought water play would be a silent activity for Harry. I am yet to purchase ( click here for demo video) Aqua accessory that Cochlear has put out. It seems to me to be a bit cumbersome and the fact you have to use a new one each time to ensure it stays 100% waterproof appears to be an expensive exercise. So ,I think it is time Jane and I put our thinking caps on again and came up with a Bath/swimming design of the headband. It may be one that uses the accessory, I am not sure but we have a few months till summer hits.

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August 1, 2013 · 9:46 pm