Hachimaki

Hachimaki

Hachimaki is the Japanese headband worn as a symbol of perseverance and courage.

Still looking for inspiration on a name

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Bionic Band

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It’s all in the name…
What should I call the headbands?
Should I reference ears, or hearing or fashion?
For sure, “Bionic” will be Trademarked by the Institute, so the whole family sat around the table tonight reeling off various versions of Harry’s Ears and trying to come up with a cool name for the headband.
Maybe we don’t need a name , as
my all time goal is to get Cochlear Ltd to include the headband in the suitcase of accessories
you get when your child receives their implant(s).

Wouldn’t that be awesome as it is all very well being supplied pens with screwdrivers on one end and a million processor covers , but what about an accessory that keeps them on a head that is only 50 cms in circumference ?

So, Folks, I really hope some of you guys all over the world tuning in to my tales will also buy up big on the Bionic Headband. My next step will be to set up shop(online of course ).

And the big news , based on your feedback, i have pleaded to get the price down to $18 AUD . I will be making hot pink for girls and electric blue for boys.

So stay tuned for more details

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Sewing is child’s play…

Sewing is child's play...

Folks, I am ready to sell Harry’s headbands online.
It has not been an easy task to find someone to make them commercially so other kids can benefit from this great design .
Before I press the button, please let me know if you would pay $25 for one ( plus Postage for delivery) .
I wish we could give them to you at no cost but this is the best I can do to start .

Please send your feedback as I plan to start production this month

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April 9, 2013 · 10:43 pm

More than 12 months hearing

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Harry has heard sound for more than one year now. We passed his first hearing birthday back on March 15th, and it is incredible to look back at what has been achieved in that time.

Harry’s progress is steady but slower than we thought it would be.

I remember vividly, Rita ( from the Brighton Early Intervention Service) saying to us at the very start of the year before his operation that he would be a talker . The evidence for this lay in his siblings communication skills. And indeed it is true Tess and especially Alice could talk the hind legs off a horse. Harry is surrounded by the sound of chatter and imagination everyday. He is also bombarded with squeals and screams as we navigate a house of female hormones and all that goes with bringing up two independent and strong-minded spirits.

He was not left behind when the strong will was handed out. He is such a determined little soul and even though we can see clearly now he is different from his peers he strolls through his challenges un-phased.
I am still very preoccupied with Harry’s balance. Walking is still a stones throw away but his ability to stand unaided and balance in an unsupported standing position is a struggle. None of the Specialists have any answers – they all seem to think one day it will just all click into place and we have to be patient. I am thankful Harry has a personality that is laid back enough to not get frustrated that he can’t get around on his own- he is a problem solver and uses tactics he has deciphered to be useful in maneuvering himself around on his own to get where and do what he fancies. Pushing a chair, a trolley, grabbing an adults hand or just reverting back to crawling seems to be enough to get him from A to B.

So on this journey I am once again reminded that my desire to be a perfectionist has been challenged. Things don’t fit into boxes to be ticked all the time . If Harry is not phased by his lack of independent vertical mobility then I need to focus on the positive achievements he is making with speech , as there are lots to celebrate there.

The clarity of Harry’s speech improves everyday. He has the same handful of words that relate to his everyday life and he uses them consistently in context. “Ugger” has now become so very close to “water “anyone can decipher his request.
At a speech assessment last week I was told he should at this stage be learning at least a new word or a few each week. I am not sure that it is happening at that speed so we are going to start speech therapy from the start of next Term at
Tarayle(www.taralye.vic.edu.au)
The thing is he is reading a lot- Harry just loves books and the amount of words we share together whilst reading is enormous. So given this, his vocabulary should be bigger. For some reason the way his implants are hardwired into his cortex and interpreted by his brain is not resulting in instant recognition for him. The recognition however comes after hundreds of times exposing him to the same word in the same or varying context.

No two kids with implants are the same but they all get to the same destination eventually and usually before they start school. PATIENCE is always rewarded

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18 words in 48 weeks

We have just celebrated the Anniversary of Harry’s Cochlear Implant operation and we are 3 weeks away from the 1st  Anniversary of his Switch On.

I have tallied up 18 words spoken by Harry in those 340 days.  

That is nothing short of a miracle of technology is it!!!

On returning from our Summer holidays so much has happened. Harry has started 2 kinder programs , gone back to Gymberoo and is on a mission to walk. Once we were back into a routine he started mimicking words with me again, something he has not done since the infection took hold. He loves to repeat the last line of a nursery rhyme and his current favourite is The Wheels on the Bus ( if that is classified as a nursery rhyme). He sings “All day long” after I finish my out of tune version. I am hoping that at this stage of interpreting sounds he is not fussed as to how well the melody is held. I have to curse the Apps on the Ipad and Iphone though as every version of this song must be American and says “all through the town ” instead of “all day long”. I have finally found one that allows you to record your own voice – you can check out the Duck Duck Goose App http://www.duckduckmoose.com/educational-iphone-itouch-apps-for-kids/wheels-on-the-bus/ 

In taking a look back at his progress I can rewind to Week 15 (Post Switch On) when we looked at the 6 core sounds referred to as LING 6 SOUNDS representing different speech sounds from high to low pitch. With these 6 sounds a child has access to all the speech sounds necessary for learning spoken language.

A ( ahh sound) as in aeroplane,    M (mmm sound) as in mummy, more,           I ( ee sound) as in the  sound of a monkey or ee-or of a donkey,           SH as in Shh the baby is sleeping,          U (ooo sound) as in the  twit-twoo sound of an owl

Hearing chart - where speech and environmental sounds are accessed

There is no doubt he can say all of these sounds now and he could before the infection in Sept.

The next step was associating meaning to sound. A child starts to associate a sound with its related object and start to recognise familiar phrases.   These key sounds are now meaningful to him and are spoken unprompted when the object is presented to him.

AAA- aeroplane,  Mooo- cow,  Brmm- beep , beep- car,  Baaaa- sheep,

Cheep, cheep- baby chicken,  Meow- cat,

At Week 15( which was mid June) 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

At Week 30  (1st week Sept before he got sick) we also added unprompted “words”

  1. EE- ii -ee-ii -oo
  2. Brmm- aRR  for car
  3. Up
  4. Banana
  5. Ali- ce 

If Harry had continued at this rate he would have caught up with his hearing peers there is no doubt. But we were unlucky and he got sick and the infection interrupted the flow of information while it concentrated on making  Harry well again. But the beauty of all this early intervention is that the brain at such a young age has amazing plasticity    and can create new pathways to feed the sensory information via the brainstem to the brain. Click here for more information on plasticity of the brain

http://faculty.washington.edu/chudler/plast.html

Week 45 (Last week January 2013) Harry spoke the previous 5 words plus

6.Hi

7.Bye

8.Uh Oh ( when an object is dropped)

9.Car with the brrmm, beep noises as well

10.Good night ( or Gnn NIgh)

11.Water ( interpreted from Uuger)

12. Miaow

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13.Doggy ( sounds like Iggy)

14.Milk ( sounds like Mmk)

15.OKAY followed by an Um okay

Then in the last week he started to put more than one word together

16. Go car

17. All day long ( sounds like Or- day- onn)

I think the best thing of all is when he is chatting to me without his implants on after a sleep and those words are all still coming out in context and as clearly.

You couldn’t ask for more.

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A little Hearing Loss is a big thing ( taken From Tina Childress’s Blog)

I mentioned Tina Childress’s Blog last post as I just recently stumbled upon it. Tina is  a late deafened adult with a cochlear implant who now ,as a consultant/ trainer, travels throughout the State of Illinois talking to anybody and everybody about issues related to hearing loss and its effect on children.

If you are gathering information to make a decision as to whether to have CI’s for your child this is a great place for easy to understand info and this post has some great presentations she made on the subject, especially the presentation on A Little Hearing Loss is a Big Thing. Please check it out…

http://tinachildress.wordpress.com/

See Hear Communication Matters

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For the past three days, I have had the pleasure of presenting at Opening Minds: The Chicago Early Education, Child Care and School-Age Conference

My audience consisted of people like day care providers, nurses, early education teachers, regular education teachers, special education teachers and even one grandparent.    They kept me plenty busy with two workshops a day over the three days for a total of six.   Here’s what my schedule looked like:

Schedule

I love all three topics that I got to talk about…sign language, cochlear implants and the impact of hearing loss.   I think, though, that I had the most fun with the sign language classes…I haven’t taught sign language to that many people at one time since my grad school days when I taught the manual communications class.   I felt like a master puppeteer!   Raise my hands, furrow my eyebrows, stick out my tongue and my class stuck with…

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Summertime

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It has been said that between December and February all the hard work from the previous year that you have put into your child’s development starts to bear fruit . Everything they have absorbed throughout the year solidifies and they are able to accomplish their goals and grow.

It is Summertime.

We are 3/4 of the way through our summer holiday counting down the last week of a lovely break.
My goal was to get Harry walking by the end of the trip and I still have a bit of time to reach it- Just

Without a doubt he is having trouble working out how to balance.

I’ve mentioned it in the past , the ENT specialists do not link deafness and delayed gross motor skill development in children . But there are certainly some kids out there who struggle with balance along with the hearing impairment.

Despite this he is so eager to walk he just grabs a hand.. literally anyone’s , and waddles tilted to the side you are holding and off he goes. If you manage to stop him for a minute and try and get him to stand still and actually stand alone he has no idea. It is similar to watching any of us after a bottle of wine swaying and giggling but not really acknowledging that you aren’t standing up straight or standing!

And so he continues, thinking he can walk and having a ball because it means he can really play with his sisters. He has definitely improved this waddle whilst we’ve been away and if we can just crack the standing unaided he’ll be there. I am sure a few sessions with the Physio when we get home will assist with the solo standing and allow him to walk freely on Melbourne soil.

Speech progress this Summer has certainly moved on- not in leaps and bounds but the words he knows are getting clearer and clearer and some new ones have snuck in. Funny though when I show him pictures of animals he chooses to learn their sounds rather than their names. So we are stuck on Quack for duck and we now have Miaow for cat. His new obsession with Peppa Pig the British cartoon has not managed to increase his animal vocab but I have no doubt in a few weeks he’ll suddenly start saying ” oink oink” promptly followed by “Mr.Bull ” in a cockney accent.

We organised to get Harry an FM system before we left. Not a relic from our 80’s dancing days but a small microphone device that is used to enhance speech in noisy environments. Wirelessly it connects to a monitor with a microphone for you to speak directly into. It is primarily used in classrooms so the teacher can talk directly to the CI user . Whilst the teacher speaks the unit reduces any background noise between the CI wearer and the microphone user. Normally you wouldn’t get one of these units until your child starts school. Harry will be attending pre- school from February for 2 days , so I used to as a reason to request the device. It is made by Phonak and for more detail on this specific device check out their website
www.phonak.com.au and look on the FM system link.

It is an amazing piece of technology as not only does it work in a classroom environment but also with any electronic device with an audio jack. That is, a headphone connection.
So iPhones, iPads, etc can be used without any interference. The sound goes directly into the users head- how phenomenal is that?
I got Alice to download a whole series of Apps on my phone , pop them in a box and name it Harry’s Games (I actually just asked her to see if Fisher Price had any Apps and she did the rest unprompted and unaided) . He now navigates my phone to his box and plays merrily away with various Apps that focus on the alphabet and animals. All these repeat the names of objects and sounds and when the FM system is on he has that going straight into his head with no interference. I am thrilled that my new babysitter is also assisting with is speech development albeit he may end up with an “international accent” ( the toy industry term for a non American accent)
I can also use the FM system in the car with my iPhone to listen to nursery rhymes or anything on my iTunes library. Thank goodness as I was getting a bit fed up repeating Incey Wincey Spider over and over again!

After this discovery I started surfing the Web for other Apps that could assist with speech development. I thought that the Cochlear Ltd website had some listed but I was unable to find them. What I did find though was a site from the States by a Teacher of the Deaf listing her recommended Apps for Kids with a Hearing Impairment.
If you are interested checkout out the Blog
Getting from there to hear Blog by Tina Childress. She has a tab in the main menu ” Apps for IOS devices ” and lists all the relevant Apps there.

So a week left till school resumes and we race closer to the One Year Anniversary of Harry ‘s Switch On. Next Post I will tally up all his words to date and see where we stand one year in.

Till then………..

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Harry’s Ears : Blog 2012 in review

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

600 people reached the top of Mt. Everest in 2012. This blog got about 4,100 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 7 years to get that many views.

Click here to see the complete report.

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Progress after 9 months

I haven’t written much about Harry’s speech progress in a while. Looking back on my posts there is a lot about keeping the CI’s on with various accessory adaptations but I seem to have subconsciously steered clear of discussing his hearing progress since the infection.

There is a reason for this.
It was not until the end of October that Harry was given the complete all clear from the hospital and we could say that the intravenous antibiotics had worked to save his left implant. The infection was gone and Mapping showed it had not damaged either implant- you can’t even imagine what a relief this was for us. I guess I was waiting for the thumbs up before I wrote about it.

In the last few weeks we have returned to the Cochlear Implant Clinic for sound level reviews. After Harry’s infection the mapping had returned to pre- infection sound levels and we thought this meant the whole incident had not made an impact on his progress.

But 2 months down the road it dawned upon me in a session at Tarayle that Harry had not made any steps forward with his speech since the first weeks of mapping back in October when he said banana and Alice.

Sometimes the progress when it is not a full word is so subtle it takes a third party to point out to me that he has a new sound or word. Often this is the role of Judy our case worker at Taralye. It wasn’t until I started to discuss with Judy what Harry was doing compared to other kids with a similar hearing age, that it became obvious to me he was no longer mimicking my words in our one-on-one sessions at home.

What prompted me was a play date last month with another Taralye child who had been given her implants one month before Harry and was one month older than him. It was so interesting to see the difference between them. When I pointed to a book she repeated first go ” book” so clearly back to me and was able to do this with quite a few words.

Harry has never repeated words immediately – his process takes much longer and requires a lot of repetition of a word before he tries to speak it. I was inspired that after 10 mnths this little girl was speaking so clearly. But it also made me realise that Harry had stopped even trying to copy my sounds.

My immediate response once I had highlighted this issue was to check with the Cochlear Implant Clinic whether there was an issue with the program or Mapping. They rearranged my next appointment to bring it forward to 2 days later so we could check. They are so efficient to ensure the patients are not left without sound for any length of time.

In my mind I was hoping that there was a technical issue because if all the sound levels were okay then what could be the cause of the change in his speech?

It turns out that he was not picking up high frequency sounds in his left ear- which is the one the infection spread through to the electrode. High frequency sounds are the “softer” speech sounds such as “shh” and s sounds. An explanation for this is possibly some remaining inflammation around the left electrode from the infection- but I felt this was more a guess than a fact, as there is no way for the Audiologists to check for this and so few patients get an infection that travels as far into the implant as Harry’s did.

His left Implant levels were tweaked and he was given 4 programs to work through over a week when we were to return.
It didn’t take long for Harry to move along these new sound levels and throughout the week I was scrutinizing his chatter . It certainly increased post clinic visit but I couldn’t detect any new words or babble- just more frequency chatter which was still a great improvement.

On our return visit the levels evened out on both sides so the left side was detecting high frequency sounds better than a week ago. I am not an Audiologist- although some days i think it would help if I had some training in this field. So my understanding of what goes on once the electrodes stimulate the Auditory Nerve is very basic.
I have been told that once the brain is given the information by the Auditory Nerve that there is sound , there are still a lot of steps to then allow the receiver to be able to create speech . Maybe it is just that Harry’s brain is still creating those pathways after recovering from such a massive infection.
What I do know though, and I always take time to remind myself, is that I have never met a CI recipient who doesn’t learn how to speak well , so it will be just a matter of time.

I know I have some Readers out there who know more than I on how the brain interacts with the information given to it by the CI and are further down the track than us . So I invite you to share your knowledge with us.

After all it is a Blog and what is a Blog without commentary ??

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How to wear the CI’s with a sun hat

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I am super excited writing this post. Tonight I met my friend Jane for an impromptu picnic dinner in the park and she brought along a sun hat I purchased for Harry that she was trying to make pockets to put the processors in.

The design so exceeded my expectations.

To be truthful I was doubtful it would work as putting pockets on the outside of a  sun hat and hoping the magnets would sit underneath when you couldn’t see if they were in place or not, was a tall order.  The hat was just a regular Toshi design ( found in most boutique kids wear and baby wear stores) but I bought a medium  size so that it wasn’t too tight – I was thinking the headband would need to go underneath.

So Jane has added some pockets to the outside  of the hat above the rim to house the processors . Then as on the headband design , there are small slots to feed the coil  and magnet through inside the hat. You have to move the magnets into place with the hat over the top but I am now pretty good at knowing where they sit on Harry’s head after 6 months of putting them on several times a day. I used the flashing lights of the processor to tell me the magnets were in place then tightened the hat with its drawstring. The hat also has a neck tie to ensure it doesn’t blow off. Tonight Harry rode and crawled around the park for over an hour with the hat on and was clearly hearing my calls as the microphones were on the outside of the hat rather than having fabric block some of the sound.

WOW 

It is incredible because I was wondering how Harry was going to cope through Summer with a headband and a hat. Certainly that option would be sweaty and hot and possibly unbearable.

But this is a revelation. My only concern is if something does happen to the hat we lose the CI’s but I have now stocked up on labels that read

“Harry’s Cochlear Implants. If found please phone ….”

What I actually wanted the sew-in labels to say was

“If you find these they are no use to you. It means Harry cannot hear anything and at $90,000 a pair  we really can’t lose them. So please phone…….. to return them”

I am sure that I will take as good care of the  hat as I do the headband  and I am sure Harry will treat it the same way as well. He knows it gives him access to sound and only once has he thrown his headband off in disgust….but that my friends in another story!!!!!!

PS. For those interested in headbands we have tweaked the design so no press studs are required. This will make them easier to make en- mass which I am still trying to do. Stay posted for more updates and I have photos if anyone is interested.

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