The day we met our Hero

harry 17 mnths 2012

I have spoken in the past about how much as a family we are in awe of Graeme Clark.

A man who himself admits to the fact that he never imagined his life’s work would bring such change to people’s lives across the Globe.

Last month we had the honour, and it certainly was nothing short of an honour, to meet this Genius. As 2012 is the 30th Anniversary of the 1st commercial Cochlear Implant, Prof. Clark has been catching up with some of his fans throughout the year. I am sure that most of those he has met could actually thank him themselves for the incredible technology that allows them to hear and master speech. Young Harry is not quite at that stage and will have to rely on us recounting the story to him as he grows.

The story goes a little bit like this:

It was a sunny morning in Melbourne and the girls were taking the morning off school. They were asked to dress in their finest attire, something suitable for meeting a Gentleman.

The Professor works out of Melbourne University these days but told us he had close ties with Wollongong University where he studied as a young man.

The meeting was brief but very enlightening. Here is a man who has dedicated his working life to transforming the lives of others. If you haven’t read his book “Sounds from Silence” I highly recommend it. The Professor talked to us about the emergence of Nano Technology in the Bionic Field. This seems to be the future for Cochlear Implants, bringing about high definition sound through more electrodes in a smaller array. He mentioned how the current sound really isn’t as good as they want it to be and how he hopes the users can one day enjoy all the complex sounds that music offers.

He also spoke of how challenging working at the forefront of ground breaking research can be, as it often takes more funding than is available. Donations to his Foundation help with this.

We have some lovely photos of the morning and some memories to treasure. The impact the CI’s have had on our family is so entrenched that any connection with this world is a significant event.

G Clark 10_ full fam cropJPG

 

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Harry’s Headband

Are you interested in Harry’s headband design???
Do you have trouble keeping your little ones cochlear implants on all day. Does the pediatric kit drive you nuts?

If you are looking for something similar please contact me directly as I am happy to share the pattern with you or possibly provide you with one if you are in Australia.

My aim is to have a whole batch made up before the end of this year to distribute to those who need them or would like to try them. One of my readers has already benefited from giving me her feedback and I would be so happy if our design helped many others.
We have tweaked the design from the images below so the microphones are not covered by the fabric . I have had Australian Hearing and the Melbourne Cochlear Implant Clinic check it over and they both think the new design works well.

So please let me know if you are interested even if you live on the other side of the world from us- I am sure the issues are the same world wide!!!!

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I hear music

kid hears music for the first time

When chatting to or reading stories by other mums of CI kids , I take specific interest in anecdotal stories about their love of music.

These stories never stop amazing me with the ability of hearing impaired or profoundly deaf children who learn to play musical instruments or like Sophie Li , become high level dancers.

I came across this YouTube video recently and thought I’d share it with you as another example of how CI’s can give kids completely normal lives.

So what about Harry’s musical talent ?

I am not sure . He doesn’t seem to get the beat when we play music to him.

What he does do though is mimic the tune quite accurately after the song has stopped playing. He also picks up nursery rhyme words through song- I just don’t see him bopping or tapping in time to the beat .

Our Auslan tutor suggested to me when I asked her of her own interpretation of music, that she found sitting on or close to a speaker really helpful to ” hear ” the beat. She hears music through vibration as many deaf people do. It is not a given that the CI ‘s would give Harry a quality of music that he found enjoyable. You read varying reports from CI users as to whether music is enjoyable through their CI. Musical sound definition is certainly a high priority on the list of new developments for the cochlear implant.
I am getting the impression it may not sound that great to Harry.

It could of course also have something to do with the fact we now all use iPods or iPhones to play our music housed on compact speakers. In an acoustically controlled environment this sound quality can be awesome, but in your local church hall it is practically in audible . Here begins the challenge of music classes for toddlers.

I have been on the hunt for a music class that will assist Harry in a love for music and that will also allow him to learn new words through someone singing in tune ( as opposed to my monotone singing voice) . Each one I have trialled is in a massive empty church hall with 4 or 5 kids with their mum and a lonesome teacher. The tunes are played on an iPod on a portable system and the words disappear into the vacuum of space that houses us. He doesn’t mind the part where we play instruments as any boy loves to hit and bang or shake some bells . But without acknowledgement from his brain that there is a beat to follow it seems just a pointless exercise.

In the early days our lovely friend Beata opened up her music studio for Harry and with a voice like an angel in a small studio she used to sing to him. He was only wearing hearing aids then so the high pitch of her voice somehow permeated through to his brain and we delighted to see him turn to her voice.

So I think that is more evidence the sound he hears from recorded music is translated very differently to his brain than the way our brains hear it. I would love to know from other CI users what they think… As perhaps it might be a matter of his age and in the future plasticity of his brain at such a young age will allow him to learn to appreciate music in whatever form it is presented to him.

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From listening to speech

It is now Week 30 since Harry’s Switch On date back in March.  We had 4 weeks in there without sound while he was sick but I am not sure if that is counted.

Back at Week 15 we had clocked up the following words that Harry repeated and recognised as linked to an object:

  1. Mumm- mummy
  2. Baa- sheep
  3. Moo- cow
  4. shh- for baby sleeping

 Now at Week 30 we can add unprompted “words”

  1. EE- ii -ee-ii -oo
  2. Brmm- aRR  for car
  3. Up
  4. Banana
  5. Ali- ce ( we are not quite sure  if it is Ali or Alice but time will tell)

The two most recent are banana and Alice, but Dan is doubtful that he has mastered banana based on my video.  One thing is for sure, he says, Harry won’t be voted in as the spokesman for the Queensland Banana Growers Association. Not just yet.

This list is not exhaustive. There are heaps more words he recognises but doesn’t speak.  He has started to incorporate Auslan signs and general pointing gestures to communicate them to us so I don’t think it will be long before he starts to vocalise the words as well.   I apologise for no video, I really need to find a new and better way to upload them.  

Today we had another mapping session at the CIC . Here they were testing his tolerance levels to loud sounds to see if he could be put back up to the levels he had prior to being sick.  We are now just above those levels which is really encouraging and there is no doubt his sickness has not set his development back at all.

I chatted to the Audiologists at the Clinic today about last weeks 30th Anniversary of the first commercial cochlear Implant operation. I love the old photos Cochlear has posted on their website to mark this occasion.  ( check out  www.cochlear.com/files/assets/timeline.swf )

It is a visual timeline of the Cochlear Implant History and the part Graeme Clark played in bringing this amazing technology to everyday people. We now have a date to meet Graeme Clark next month and we are beyond excited. Every day we think about what Harry’s life would have been like without sound and how lucky we are to live in this Age.

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Some new words

Did you think it was about time Harry uttered some more words?

I don’t actually think “uttering” is actually in Harry’s vocabulary, as the volume level he is inclined to share with us is nothing short of loud.

It could be that he is learning by example from his sisters and their daily screeching; at me, at each other or my screeching at them the non- stop orders about bags, hair, teeth, homework and picking up wet towels from the floor. There is no doubt the sound experience of a 3rd child is primarily made-up of a barrage of commands and the click of car seat and pram buckles.

Amidst all this Harry has managed to piece together the sounds of 2 more words in the last week to 10 days. As I mentioned in earlier posts we need to hear him say the words in context more than once to ensure it is not a fluke or wishful thinking.  But for sure there is an element of intereptation in deciphering these words.

Have a guess at what you think it they might be….  I’ve only been able to record one of them so far.  As soon as technology  allows me to upload it please check out “Meet Harry” on the Blog menu and go to Harry 16 mnths.

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I will always remember how things turned out fine

SOMETIMES by Colin Lennox

 Sometimes I wonder what happened to me

Sometimes I ponder what life’s going to be

Sometimes at rest I get the odd fear

Sometimes I think will I ever hear

Sometimes just sometimes I really despair

And sometimes just sometimes think life is not fair

Then sometimes and this I think is ironic

I contemplate life when I am bionic

I try to work out without reason or ryhme

Hearing for always and not just sometime

So here is to hearing and the joy that it brings

It blesses our life with so many things

I will always remember how things turned out fine

And be thankful for this gift and not just sometime.

It is certain that prior to Harry getting sick, we had arrived at a place which we were so comfortable in, that his hearing was being taken for granted. 

I no longer thought back to the struggles of getting him to wear his implants, or to the even earlier frustrating sessions at Australian Hearing testing Harry with Hearing Aids on. He was travelling so well and we could finally enjoy having a 1yr old son and all it entails.

The sore ears of my last Post developed into an infection and Harry ended up checking into the Melbourne Royal Children’s Hospital to have intravenous antibiotics administered. The chances of this happening are a small 2% of all Cochlear Implant recipients that are young children.  It was just bad luck in our case.

But we were also lucky that we have such an amazing health system in this country and when it counted we were given priority by our GP, the Implant Clinic and the RCH who all worked together to make Harry better.  During this saga and the weeks preceding it Harry was unable to wear his implants.  In total he was without sound for 4 weeks.  Considering he had sound for 5 months, that is a long time.

Even when he was well on the road to recovery he did not have the all clear to replace the implants. It was evident that our Auslan skills were enough to communicate with Harry, but that he didn’t have any skills himself.  Surely the lessons we had been attending had transferred to Harry via osmosis. Despite this not being the case it was incredible the way he adapted to find other methods of communication.

One afternoon he was obviously hungry and so crawled to his highchair , climbed up to grab his bib, and bought it over to us to say ” Heh there .What about some food?”

 On another occasion he hopped on his bike, rode to his bedroom and grabbed his cardigan and brought it to me. “Let’s go outside” he was saying to me.

Last Monday we went back to the Implant Clinic to be re-Mapped. The insertion of grommets to assist with drainage can make a 10% difference to the sound levels the CI recipients can hear. Harry was given grommets as part of his recovery treatment. I was also hanging in there at this appointment for confirmation that the left electrode  where the infection occurred was not damaged.

 I so wanted to video him putting back on the CI’s in this session as it was truly a “You tube moment”, they switched on the sound so he could hear what was happening in the room (rather than on the computer) and when I called out his name he turned to me with such a big smile on his face.

The episode in hospital really showed me that to have Cochlear Implants is a gift and at anytime in Harry’s life he may face times when he does not have access to sound and he needs to have other skills for communication.

 I have often recounted to friends since getting home that when you consent to your child undergoing the surgery for Cochlear implants you only briefly scan through the risks- as you are focusing so much on the positive outcome of giving your child sound.  Do we ever realise entirely the great level of responsibility we have to these kids?

It is not appropriate to use this forum for advice as this is only a log of our journey with Harry and I wouldn’t profess to be more knowledgeable than the rest of you out there. But this is my experience and I have chosen to share it with those that are interested and hopefully those on a similar journey.

At the end of the day, to put it simply, the Implants are a man-made object in the head. And if ever you are in doubt about what to do with your child with Implants who seems unwell, I would urge you to go early on to your local Implant Clinic where the ENT’s have so much more experience with implants than anyone else. Be assertive in making this happen and then the chances of there being any risks can only reduce.

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Sore ears

As a reader do you ever wonder what would happen if Harry had sore ears?

By that I mean regular ear infections, the stuff kids get all through the early years, especially when they start school. It was something I thought about when I was about to enrol him in swimming lessons for next Term- well “water familiarity” they call it rather than real lessons. He loves the water so much in the bath for me it was a natural progression.

But then this week, poor old Hazza caught a virus off sister #2 and it went straight to his ears. It also went straight to her ears, so the virus didn’t show favouritism towards the CI kid. In this case the ear infection brought with it fluid in the middle ear and according to our ENT specialist it can take a while for the fluid to drain away. So I am putting the pool on hold for now.

What has been a remarkable insight through this whole week of fever and sniffles and visits to GP’s, ENT’s and the like has been Harry’s inability to use his CI’s.

Every time I have tried to put on his headband he has started crying. For sure, his ear area is tender (I get the same response from the digital thermometer being inserted) but I wouldn’t have thought the pressure of the headband would make this worse. I have persevered everyday in case he is ready but we are still not there yet. It was not until we were at the Cochlear Implant Clinic where Harry was checked over by his surgeon that I was told that the  

Mapping can sound distorted when there is fluid in the ear and the recipient may not like the way the sound “sounds”.

This week I have experienced 7 days of having a child who has temporarily chosen not to have the wonder of technology to give him access to our loud world. Up until now Harry has been hearing so much that I have almost taken for granted his ability to absorb speech and sound and communicate with us all. We have been learning Auslan for only a few weeks now but can confess we have practised our new skills very little on Harry. This week has really tested me in terms of my ability to attract his attention and let him understand what is going on around him. Learning words in a language is not the same as sentences to give commands and explain or ask things. I have realised that we need to learn short commands and action words to be able to communicate with Harry in Auslan at his age. I have no doubt that once the infection has passed and he is wearing his CI’s again he will be full of new babble and sounds that he has time to process without interruption during this quiet period.

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Blog traffic

Something has been on mind this week.

WordPress Blogs have a feature that allows you to see where your readers are coming from as well as how many people are reading your blog.

You can become quite obsessed with these stats and try and imagine who your followers might be.

I am curious as the post that gets the most traffic in our Blog is the one called ” Bionic Seven”, referencing a cartoon and a character with powers related to magnetic fields . This at the time was relevant as I spent most of my day placing Harry’s magnets back on his head as we had not managed to get ones that were strong enough.

So I am wondering Readers what it is about this post that is drawing you into my blog and I am inviting you to send me comments and let me know.

Curious as to whether it is related to the image of Harry’s headband that holds his Cochlear processors in place on his head or just that I wrote about something that is of general interest……..

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Thank you Graeme Clark

 

August 19-25th marks Hearing Awareness Week across Australia and 30th anniversary of commercial cochlear implants.

 

Last Sunday Channel 7 aired another program on Cochlear Implants. The response from viewers to the show last month was so overwhelming they chose to film a follow up program focusing more on children and how CI’s changed their lives.  In the show Prof. Graeme Clark, the esteemed inventor of the Cochlear Implant was interviewed and shown video footage of children whose lives he has changed around the world. 

Such a humble man.  He never thought that his life’s dedication to giving sound to deaf people would result in over 250,000  recipients of the Cochlear Implant and the ability for those people to hear either for the first time or be brought back from a world of silence.

 

Coincidentally a few weeks ago, Dan decided he wanted to write to Graeme Clark to acknowledge our gratitude for the impact the CI’s have had on Harry. He asked if there might be an opportunity sometime in the future for us all to meet the Professor.  A few days ago we received a reply to this letter from Graeme Clark suggesting we contact his team to organise a time as soon as possible.  For Dan, this was up there with his dream to meet Keith Richards (but he won’t say that to Professor Clark!!)

 

Graeme Clark’s work continues today. He has a foundation that assists those who are financially and socially disadvantaged to obtain a cochlear implant. In addition, the Foundation has assumed a broader responsibility to give hearing generally to those with middle ear disease, and in particular indigenous Australians where ear infections are a major problem. The Foundation is also supporting research to achieve high fidelity hearing, acute hearing in noise and musical appreciation with a cochlear implant and/or hearing aid. The pioneering research by Graeme Clark and team has led to the development of a new discipline in medical research, namely Medical Bionics. It will help form the scientific basis for the development of a bionic eye and bionic spinal cord. 

It is from his research that scientists were able to create the current neo- natal hearing tests which are catching so many new babies with hearing loss and allowing them access to sound  early enough so they are able to enter mainstream schools speaking and hearing along with their peers.

Below is a link to the Foundation’s Website and the TV footage from Sunday night.

http://au.news.yahoo.com/sunday-night/features/article/-/14570090/hearing-for-the-first-time/

http://graemeclarkfoundation.org/

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Five months post switch on

Harry has now had sound for 5 months. It doesn’t seem very long to me but someone referred to him as not being a newbie now.

With all the progress he has made over the last few months , our expectations have been be that he would continue  to develop at this extraordinary speed and before he was two years old ( so only 10 months away) he would be on par with his peers.  But the reality is that that his output is directly linked to my input and I have taken my foot off the pedal a tad this last month. It is inevitable that would happen- with a family of three kids you can’t possibly put all your energy into just one child, and it wouldn’t be fair to do so even if you could.

So at 5 months post switch on Harry has the following sounds:

M- Mmm

Y- Yeah

G- Some babble with G in it

B- Brrmm

He also definitely says “uhh” for up in a variety of situations and is close to saying a version of “Bye” when someone leaves.  There is even a possibility he said “car” recently but it will need to be repeated in order to be lodged as official.

This is a modest addition of sounds and “words” to the last months listing and we are thrilled that the progress is constant.

On top of all this he is integrating so well at the normal toddler activities. A weekly visit to Gymberoo allows him to climb and explore to his hearts delight- well for 30 mins anyway. He is then required to come and sit on the mat and do singing in a group.  This he is not so fond of.  He much prefers to maul the other babies and plant kisses on their faces.  I have really landed on my feet here as the assistant informed me today that she did a 3 yr degree in Auslan (sign language) and would love to have the opportunity to practice on Harry.

How perfect when only this week we started to learn Auslan as a family. 

We have also settled into a pattern of visits to Taralye, the Oral language centre for Deaf Children (www.taralye.vic.edu.au )   This is our support service and from his 2nd birthday the centre will also be able to offer Harry some sessional kinder classes with both hearing and hearing impaired kids.

Once every fortnight I visit Judy our case worker with Harry and she observes and helps me record his progress. Harry now recognises when we get out the car at Taralye and gets excited that he is going to spend time in Judy’s office which is filled with lots of great toys and activities.  The sessions are very informal but we always seem to cover off a lot of things in that allocated hour. It gives me a chance to check in any concerns that may surface about how much Harry is achieving and be comforted that he is comparatively making great progress.

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