How to describe what a cochlear implant recipient hears

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I often get asked ” how much can he actually hear”….

My standard answer is “80-90% of what we can hear”. So pretty much everything as long as his brain decides to interpret it.

This notion of mine that a lot of what Harry hears is down to interpretation or decoding by the brain was put into much better words than I could ever write by another parent of a CI kid. So in his own words ….

” I need to apologise for ripping this from someone else and I’ve seen the analogy elsewhere talking in terms of pixelation on cameras but it all boils down to the same thing, CI’s are not normal hearing. … so I’ll try to make a visual picture that relates to the way sound is heard by a child with a cochlear implant. Suppose that you have to identify a four-legged animal, and you’ve not seen that animal before but you have to figure out what it is. Maybe you have to draw it. Maybe you have to learn the name for it.

Now that animal is standing in back of a bunch of trees. To see that animal, you have to look through tree trunks that are hiding big parts of that animal. Now, if you were looking through those trees with the equivalent of a hearing aid, you could probably only see the tail end of that animal because you could only hear the low frequencies with that
hearing aid. With a cochlear implant, though, you can see pieces of that animal’s head, pieces of its neck, its legs, its body, pieces of its tail end, but you still are missing pieces in between each of those that you see.
The reason I’m bringing this up for you to think about is because

it’s important for us to realize that children who are using cochlear implants still don’t see the whole animal. They see more of a range of that animal but they have to use their brains. They have to use what they already know about the world.

They have to use their cognitive abilities to fill in those gaps to be able to put together a picture of that whole animal. That’s the kind of task that a child is facing using a cochlear implant. “ Dr. Patricia Spencer, Professor, Department of Social Work, Gallaudet University

This explains rather well where the technology has to get to, like improving the camera on your phone, it’s possible it’s just the next round of upgrades. We often hear of children enjoying music but struggling with complex sounds and harmonies. ”

Today Professor Graeme Clark was awarded the 2013 Lasker~DeBakey Clinical Medical Research Award ( click here for the details) along with his fellow scientists Ingeborg Hochmair (MED-EL, Innsbruck), and Blake S. Wilson (Duke University), for the invention of the Cochlear Implant.

Please watch this video (http://www.laskerfoundation.org/awards/2013_c_interview_clark.htm) it is a very profound and humble short documentation of the genius of the three scientists and how their perseverance and determination has changed hundreds of thousands of lives around the world.

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Channel 10’s The Project segment ” Getting Deaf kids talking”

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channel 10’s The Project interview with Taralye’s Ambassador Sarah Murdoch

What great PR for Taralye to have this aired on Channel 10. Sarah Murdoch as Ambassador to Melbourne’s Oral School for the Deaf, Taralye, visits the centre and talks to families about how the Cochlear Implant has changed their families lives.
It was a strong reminder that services such as Taralye are vital to families with Hearing Impaired kids. Watching Chantelle , the mum interviewed, revisit the moment when she found out her first child was deaf rang true as one that never leaves you. We have come a long way already with Harry in the last 18 months and nearly 2 1/2 years since that day . It has not all been the perfect scenario but he is moving ahead at his own pace bringing sound to his world.

You might notice there are a number of comments on the Channel 10 website under this segment from members of the Deaf community who felt Sarah Murdoch did not choose her words well… she referred to the children at Taralye as becoming normal rather than being deaf..we all know what she meant .. the gift of sound is not accessible or chosen by all deaf people/families, but for those whose lives the Cochlear Implant touches , it is without doubt the most incredible invention and a precious gift.

If you live in Melbourne please support Taralye this weekend by coming along to their Market Day fundraising event

For more details check out their website
Taralye

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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

Counting

Check out Harry counting with Tess whilst we were away in London.. 

He can now go all the way to 10.
He really loves working with numbers and whenever is sees some on a notice or in a book he starts to count.
His Kinder , Shelford ( www.shelford.vic.edu.au), have set up some magnetic numbers from the days when we used to use them on fridges, on a light box, so the kids can match the magnets to the drawn numbers. Harry spends hours playing with this.

Obviously there is a lot of interpretation required to fill in some of the consonants that are being left out but as with all his other words it gets clearer with time and practice.

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Who was first Keith or Harry? A Rolling Stone fashion dilemma

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Last week the Rolling Stones played an historical gig at Hyde Park, London, having not played there since 1969. It was of those rare but amazing London evenings of warm temperatures when the sun doesn’t set until 10:30 pm.
Those geriatric rockers, as Dan likes to refer to his adult obsession, had so much punch for their age (mostly 70 years old) they were an inspiration to watch. Throughout the gig, which we were privileged to attend on the last night of our overseas holiday, my focus was constantly on Keith Richards’s bandana. Electric blue, it looked identical to Harry’s headband. Not only that but Keith also sported a full head of unruly curly locks tucked behind it. 
I also found myself concentrating subconsciously on the vibrations of the music- almost putting myself in Harry’s shoes as if he had been with us at the concert?

So we are finally home after a month visiting family and friends in the UK and a week to get over that in France. Harry turned 2 the week before we left and there was no doubt we were traveling with a regular two-year-old boy. Antics of climbing out of his cot before he fell asleep at night, pulling out Grandma and Grandpa Finchley’s TV satellite antenna, leaving them for days wondering why they had no TV picture, were but a few of the things he got up to. He met many new faces and I think I could safely say on their behalf that many would not have known he was deaf if they hadn’t previously known.

Ice cream in Cambridge

Spending that much time with all of us not working was ideally a time for Harry to increase his vocab and absorb all the new sights and sounds of a city with over double the population of Melbourne. According to Alice, one day she counted 55 siren sounds on our outing- that’s a lot of crime and accidents in one day- but that is London. Busy, fast, crowded, noisy and full of different smells. I wouldn’t doubt that just taking all that in everyday was more than enough for a two year olds senses to cope with especially a boy obsessed with trains and vehicles. Given a few more years on him, I have no doubt Harry will be exactly like Alice who started mimicking the announcements on the Northern Line tube…. “The next station is Hampstead, Swiss Cottage, Finchley Rd….so please mind the gap between the train and the platform… Stand clear closing doors” etc.
Harry is not quite there yet but who knows if it is all stored away in his little mind waiting for an opportunity to jump out. 
Speech wise he was quite reserved throughout the trip. I can’t really think of any new words he spoke, but that could be that I am writing this at 4 am in a jet-lagged state so am a bit fuzzy. He did perfect his counting and Tess worked really hard with him on this and has him counting with her to ten. But since he has settled back into a normal routine, the new words are starting to come. I know I am still able to reel them off, which hopefully will not be the case later this year, but it is useful to be able to record them here. We can add in “cucumber”, “see you later”, and “ding dong” for the doorbell. He is also doing a heck of a lot of babbling. In those moments the missing plosive sounds of “B” and “D” are making a statement, it is just not in a real word. I think this for me really consolidates the fact he is hearing everything, but it is just a matter of him catching up. He is definitely speaking like a child who has been hearing for 16months, rather than a 2 year old. But I would also say his comprehension is that of a two year old as he certainly understands everything you say. Funnily I picked this up when we where talking to a friend about going home and Harry was on the other side of the room playing happily by himself. He heard that we were saying that we would see them later- he immediately started to pipe up “ Gye Gye, See u “ater”. We were amazed!

He also perfected his preoccupation with pigs whilst away- his mild snort that he used to tell you he wanted to watch Peppa Pig has now turned into quite a hearty version based on listening to Doris the pig who belongs to friends of ours we visited in Suffolk. He whiled away many hours on the airplanes watching episodes of Peppa Pig using the FM system which I hope cut out the noise of the plane and allowed him to focus on the words. I love this show for Harry because in addition to its great humbling humour, the language is very clear- the sentences aren’t long or complicated and so he has a good chance of grasping what is being said.

Suffolk, UK

Suffolk, UK

I was able to discuss at great length the pros and cons of I-pad usage for teaching kids with a hearing impairment when I met with my dear old friend Mark in London. He happens to be a Teacher of the Deaf and a Speech Therapist in a school in North England. I hadn’t seen him since Harry was born, but we have spoken via email a few times. It was so amazing to hear what the UK is doing to progressively move their kids forward through the use of I-pads and Apps. I was also blown away by how the services in the UK catered for all the manufacturers of Cochlear implants. In Australia our kids are solely implanted with Cochlear Ltd, in the UK depending on where you are implanted and who is looking after you, you may have a Med-El or Advanced Bionics system. Given the recent burst of advances in technology by the other Brands of CI, I found this fact fascinating. There is no doubt in the end they will all be more or less the same as otherwise they wouldn’t be able to survive as commercial companies in their own right.  In a few weeks our ENT Robert Briggs will be chatting to Dads about the forthcoming technological advances we can expect from Cochlear and Daniel will let you all know via the Blog what he has to say.

All in all it has been a month of steady progress for Harry. He is undoubtedly an inquisitive and brave two-year-old boy, who takes risks and is obsessed with anything that has wheels. He has gained the confidence to walk out in the wide world on his own with out my hand to guide him. He has gained the confidence to say “No”, with an accompanying strong shake of the head when he doesn’t want to do something. He has also started to sign things he needs when without his ears at night. Communication is a combination of various strategies, and Harry is learning the art of mastering the most effective ones to get his needs met. All else falls by the wayside and there is no point forcing it. If is a word is useful to him he will speak it- if not it will stay stored. Can I simplify this by wondering if this is because he is a BOY?Hamley's London

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Is 3 words a sentence?

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The month of May has brought new words, a more stable inside walk and some very in- tune singing. I would be bold enough to describe the recent developments in speech as a flourish of language.

Since we last connected Harry has spent many hours walking up and down our 12m corridor on the camping mats, barefoot, to bring his walk from a tilting totter to a proper toddler walk. Without fail everyday he will wander up and down the hall to the front door and back to the kitchen just to gain confidence walking. It is an innate response and I guess that is what it should be with babies so they can evolve.

His language has blossomed beyond my recent expectations. I have to say that I had resigned myself to slow progress in this area. A word or two a month has been the standard headway for the last 6-8 months and no one was sneering at this because those sounds he had grasped were significant and meant he fell within the boundary of the “hearing age” bracket we had allocated him.

Last count was 18 words in 1year of sound. That brought us unofficially to April. We are now about to move into June and Harry is about to turn 2. In the past 4 weeks I have been able to add 9 new words to this list and 3 sounds for vehicles. Phenomenal

  1. Ball (without the B)
  2. Sock (ock)
  3. Shoe (ooo)
  4. Row row (from the nursery rhyme)
  5. School (pronounced  “All”)
  6. Walkies
  7. Down
  8. Counting-1-6
  9. All day long (from Wheels on the Bus)photo

He also distinguishes when he plays with vehicles, the varying sounds they make. The ambulance and police car go “nee nar, nee nar”, the fire engine goes “ee-or, ee-or”, the train goes ” oo- oo”(the ch will come with time).

Having the appropriate sounds to go with play is a massive indicator for the Specialists to gauge how he is getting on. From the speechies and the CIC staff, to the Occupational therapist, they all comment on how appropriate his play sounds are for his real age. I am basking in this praise- it is music to my ears.

In our Speech lesson last week, Beth introduced Harry to an on-line karaoke website. You might well imagine how a toddler who can’t stand yet would benefit from a karaoke session. I think it was a shame there was no microphone or disco ball above us to bring the atmosphere into the room, nevertheless we started a journey on the Raising Children’s website (a Gov’t site) and fell in love with their version of Old MacDonald, Row, Row your boat and Open, Shut them, to name only a few nursery rhymes.

 

https://raisingchildren.net.au/baby_karaoke

 

The beauty of this site is that the words are sung slowly and in a great Aussie country drawl. Most are accompanied by a video with animated characters that do the actions for the songs clearly. I am conscious of Harry not spending all day on this as no toddler can cope with over exposure to electronics. Those telling signs that the I- device has expired as a babysitter when you try to graciously pull the item away from their inquisitive little hands and they tighten their grip into a vice around it. And scream!

Without a doubt a child who has lost a sense such as hearing is more dependent on sight to give them information. And so, Harry is drawn

wheels-on-the-bus-1

to anything that is overtly visual. This includes TV, and other visual electronic devices. There is a very fine line between him using them to learn and them burning him out with their visual references.

 

It was only yesterday that we were sitting in the kitchen reading to Harry as he had dinner (as it is often the time we do it to distract him enough to eat).  The girls were chipping in with their 2 cents worth of Old McDonald when suddenly I heard an “ All day long” that was nearly so clear that I thought it came from Alice. In perfect response Tess grabbed the hone and tried to get him to repeat it.  Check out the video and see what you think, but in our books that is a 3 word sentence and we are ecstatic!

oldmcdonald


 

 

 

 

 

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AB launches Naida CI Q70 in Europe and Canada

Advanced Bionics takes the lead in wireless connectivity for CI’s but I am sure Cochlear Ltd must be working on it too…

I look so I can hear....

Naida

“Sonova Holding AG, the world’s leading provider of hearing solutions, announces today that its subsidiary Advanced Bionics (AB) is launching its new Naída CI Q70 (Naida CI) sound processor. The device is now commercially available in Europe, Canada and several other countries in the world.”

Naída CI Q70 User Guide

Advanced Bionics – A quantum leap forward

In the UK, your NHS audiology clinic will decide whether they can afford to stock the Naída CI Q70. Some hospitals are offering a free upgrade immediately, some are offering upgrades after 5 years (or longer), some are unable to offer this processor. Check with your audiologist for further information.

Naida

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OT, ST…Occupational therapy and Speech therapy start

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Despite all my efforts to find a “label” to apply to Harry’s delayed motor skills, I can’t seem to find one.    It is not a common issue; he is one in 20,000 with a congenital profound hearing loss, and even less has issues with balance.  It appears that it is a “bi-product”(and that is my own term) of his Deafness.

As you can imagine Readers, having followed this journey for the last year, I have discussed this need for a box or label with which to understand his issue with a number of Specialists- from our ENT, our Paediatrician to our Physiotherapist. But no-one seems to know exactly why Harry has these delays and he is struggling at the moment to stand on his own.

One consistent comment that has emerged through these discussions is that Harry is unable to work out where his body is in space. He requires a lot of sensory input to let his brain know that he is standing, the ground is beneath him and he can move up or sideways or go straight ahead in this space.

Our Physio appointments were only monthly and in between it was up to me to make things happen. It was only Physio that was trying to assist with his gross motor skills. It is like that with everything though- really the parents are the key to the child’s success. What you put in, they get out! I was trying as hard as I could but really everyone was waiting for it to just click into place for him.

OT clip art

So we have been bumbling along since January with Harry cruising around, and slowly getting more confident, but never really being able to go on his own as he couldn’t stand.  Every time he stopped he fell, either on his face or onto a vertical surface he could lean against.

He never starts from standing- he begins his walking experience by leaning against a person or a surface and then launches from there. And this is how he stops. There has to be something there to break his fall. He has not mastered the STOP by STANDING.

This is still where we are at the end of April. So between me, the Physio and the Paediatrician, we decided the only therapy we hadn’t really looked at for this issue was Occupational Therapy. I know nothing about this field. The Physio warned me I might find it “woolly” but quite frankly so was Physio. I was recommended a particular practice not far from home and set about to get Harry started. It took nearly 4 weeks for them to find a therapist that was experienced enough to tackle Harry’s issues. I now know why, as in between I randomly surfed the Web to see who else in Melbourne may have had experience with hearing issues and balance in Kids, phoned around and dragged us all off to see what they had to say. I spend endless nights drawling through reports on the Web about sensory issues and most notably Sensory Integration Disorder. It was the only thing that seemed to be close to what Harry was experiencing. It talked about the use of Occupational Therapy to assist with kids who couldn’t work out where their body was in space. It was not easy reading, as there were a lot of other social issues linked to this disorder, which Harry wasn’t displaying.

Did that mean they were to come- was there still more to unravel? I don’t think so. I think it was an exercise in learning not to self-diagnose.  It can be really soul destroying and ultimately damaging to all the work you have put in thus far.

The story ends well. I have  found a lovely lady who is an OT and has worked with kids with hearing impairments and she seems to know what she is talking about. She spent nearly 2 hours with us on the first visit to assess what may be the cause of Harry’s lack of equilibrium. In that 2 hours Harry had moments of walking without a wobble and it was enlightening for me. By the time I came to see the OT I was at rock bottom. I had convinced myself Harry was suffering from any number of disorders and was not making enough progress. I guess this is what comes of seeing so many Professionals- conflicting advice and opinions, when actually most of them, like us, don’t always know “Why” something is not clicking.

She then requested that we line our hallway , which Harry had stopped attempting to walk down, with rubber mats. The hallway was a means to get around most the house and he either crawled or pushed an object to get down it. When we tried to get him to walk down it alone he belted his head on the hard Jarrah floor so many times he just stopped trying. And who would blame him. This is because he seems to be missing the basic reflex of putting his hands out to save himself when falling. His head always hit the ground first. And with the delay in walking came enough age( or maturity) to know that it was a painful experience and not worth doing anymore.

password harry2011

I have some video with the mats down in our hallway and Harry’s sheer glee at being able to manoeuvre  himself solo for 12m. The first evening he walked up and back about 15 times just to make sure he wasn’t dreaming. The OT made some other requests which I have been doing and altogether I have seen a vast improvement in his steadiness and confidence over this week.

I will add a page into the Blog under Useful Links all about OT so if you think it might be something useful for you to read then it will be there.  We will be going weekly until our trip to the UK in June and so we will see what happens.

OT room

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First speech lesson at 23 months

password “harry2011”

This is Harry’s first speech lesson learning the prompt technique for the sound B. We have started speech earlier than usual ( normally it starts at 3 years) as  I have been the pushy mother that insisted it was a good idea. Never one to stop still I noticed with the Specialists that he is  mastering the sounds for the consonants   “M”, “N”, “G”, “K”/ “C”.

But there is no attempt on his part to try to copy any words that start with the letters “T”, “P”, “B”, “H”, “D”.

These sounds are made from the front of your mouth , whereas the sounds listed above that he can do, are sounds from the back. The normal progression in developing these sounds is when a child masters the expellation of air ( is that a word)  to allow them to shape these sounds that are made further toward the front of your mouth. By 12 months most children would use “plosive” sounds and nasal sounds (p,d,m). This continues through to 18 months with an establishment of all the vowel sounds.

So where is Harry with all this.

He has not mastered the plosive sounds  and has mastered about 1/3 of the vowels at this stage. So we are trying to work out whether he might have a motor skill issue that is stopping him from forming those plosive sounds which would generally come earlier than the hard back of the throat sounds of “G”& “K”. He is certainly hearing them, as his comprehension is on target with a child his age ( as opposed to his hearing age). But he just never tries to imitate any words beginning with these sounds.

As he has experienced some delays in his overall gross motor skills ( such as standing, walking , sitting)  the Specialists are guessing that there is a possibility of a link between this speech delay and the gross motor skill delay.  That link could simply be that he had an All Mighty infection last September and it is taking the body a while to completely recover and get back to where it was at that point. We also know in little ones, that the body focuses on one major thing at a time and if the brain is preoccupied with walking,  then the speech is going to come second.

The one clear thing in all of this muddy water is that he is developing. The speech is coming along. Maybe not exactly in the order that other CI kids have shown, but despite the lack of some sounds he is joining more than one word to make short 2-3 word sentences. Every time he practices them they get clearer and clearer as long – as they don’t include P’s or B’s , T’s D’s or H’s!

He says” Hear ya go” when he is waiting his turn for a musical instrument in a class setting and the instrument is being passed from kid to kid, before he comes to him. He also says it to us when he is passing us a toy.

He says “See  ya”  when someone is going , along with “Gye , Gye” in stead of Bye , Bye. And there are many more such phrases.

He says “Ank you” instead of “Ta” ( something I am immensely proud of !)

By 24 months a child would possibly have a vocab of 30 words or more. I don’t think Harry has quite that many as about 6 of his are animal sounds, but he is not that far off. His hearing age is documented as not quite 12 months  now, as we have to take into consideration the 6-8 weeks without sound during and post-op of the period of Infection last year.

So, all in all, he is doing  so well.

CONGRATULATIONS , HARRY. meadal of awesome

 

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April 27, 2013 · 11:23 pm