New Cochlear Implant Website

I have been working on a new website about Cochlear Implants in New Zealand.

www.2ears2hear.kiwi.nz

Its focus is on advocacy around the issues of bilateral implantation and Auditory Verbal Therapy (AVT) in New Zealand.

Check it out.

Comparative Language Chart

Here is a chart that compares the different approaches to language learning for deaf children. It is very simple and American-centric but a good start.

http://www.ncbegin.org/images/stories/downloads/communication-approaches-chart.pdf

Starting School

Katya started school at the beginning of the year. It was a bit of a nervous time.

Since Katya's diagnosis of being deaf (at 18 months), a lot has happened. But our aim has always been to get Katya's listening and speaking age as close to 5yo when she started school at 5yo. I termed it 5 at 5.

I can remember a number of the team who have worked with Katya trying to temper that goal. I wouldn't hear a bar of it. That was the goal and that was it. If you aim high, then even if you miss by a little bit, you are still going to be ok.

As we started school we knew we had succeeded in getting Katya's listening age up to the 5yo level. But her speaking age when we did some benchmarking tests was not quite there in January.

However after 4 weeks of school, it seems as though she is well and truly able to hold her own in her class. She is doing everything all the other kids are. She is certainly needing some support, which we get from our most excellent special teacher, Erin. But she is doing really well.

This is pretty special for me. When I think back to the day we were told she was deaf, it seemed like so many hopes and dreams that I had for Katya as a baby would be limited. Now, thanks to her Cochlear implants and all the work that has gone in, those limits are vanishing. In fact there are a number of things she can do that she will be able to do better than normal hearing people.

Its also special for me because part of me becoming a stay at home dad was to get Katya ready for school and see her settled there. As many of you know, being a stay at home dad was never on my radar. But God had different plans for me. Claire got very bad post-natal depression after the birth of Larissa and it was no longer an option for her to look after the kids. So up to the plate I had to step (whether I liked it or not). The goal has been simple. Raise my kids and get them ready for school and kindergarten. With Katya doing so well at school and Larissa settled in kindy, I feel a real sense of accomplishment.

I know the journey and work is not over. Over the next year or so we will still need to have specialist support for Katya. Her pronunciation needs tuning. And there will be the ongoing issues around hardware. But to get to this point successfully is very cool.

Getting here has not been something that I have achieved on my own. It is amazing the number of people who have contributed over the years. And I also thank God that He has given Katya some horse power upstairs to absorb what we throw at her.

Belated Update

I haven't posted here for a while as it is much easier to use Facebook. But I do like to use my blog as a more permanent and referable record of what's been happening.

Katya

We are now 2 years since we had the re-op for the infection in her right CI. So it looks like we are clear of that horrible part of our lives.

Katya's language has developed very very well. We are about to enter her last term at Kindy. She is stringing 7-8 word sentences together. Her world is verbal. She asks questions. She is constantly bossing Larissa around and telling her precisely what to do and what not to do.

She starts school at the beginning of the year and we have chosen Khandallah School because it is a bit smaller than Ngaio (half the size). We are currently working through the transition arrangements. It is amazing the amount of information you need to pass on to new people who will be teaching her. Fortunately we are likely to have Erin (our special teacher) move with her.

Larissa

Larissa is now two and a half. She seems to be gifted in her language which is great for pushing Katya along. She can hear a word once and then use it in the right context straight away. A bit of a human tape recorder. She starts Kindy at the beginning of next year. She's a bit feisty which can be a bit trying at the moment. She loves her big sister and just wants to do everything that Katya does.

Medic Alert Bracelet

Some time ago I read this article (http://cochlearimplantonline.com/site/?p=4076) which suggested that it was a good idea for anyone with a CI to get a Medic Alert identifier. The article talks about a case where a user had an accident and their processors were knocked off. They were also knocked unconscious and the hospital performed an MRI on them which ripped their implants out and destroyed their cochleas (meaning that they could not be re-implanted).
Low power MRIs are ok on CI users BUT the hospital needs to know there is an implant so they can bandage the users head. This secures the implant, preventing nasty stuff like this article talks about.
Anyway... the upshot of this is that I sorted a Medic Alert bracelet (as shown) for my daughter. It has the following etched into it:
BILATERAL COCHLEAR IMPLANTS/NO MRI SCAN
NO MONOPOLAR CAUTERY
HEARING IMPAIRED
Monopolar Cautery is an electrical device used in surgery to cauterize and uses the patients body as an earth, which again would be bad news for an implant.
Anyway, for a one off of $70 plus $30 every year after to keep an up-to-date electronic record linked to an ID number on the bracelet, it seems a good idea. Especially as my daughter starts school. There is a bit of form filling in required.

NZSL Dictionary

http://podcast.radionz.co.nz/sat/sat-20110702-0845-rachel_mckee_sign_language-048.mp3

Interview with Rachel McKee from VUW on NZSL dictionary

iOS Apps for pre-school CI Kids

My family has been an Apple family since the beginning. We are fortunate enough to now have a number of Apple iOS devices including an iPhone, iPad and iPod Touch. These are fantastic devices. They are robust and extremely intuitive. My kids are now proficient and self sufficient operators of all these devices. It seems to take a kid about 15min to become proficient!

There are now a number of apps which have proved to be very useful for my daughter in the development of her listening and speech. I'm going to list these and comment.

SoundTouch

This is a great app. It has grids of pictures that you touch and it brings up a photo and plays the sound. The grids are different categories so it is good for learning groups as well as listening to different sounds and learning the nouns.

TapAndLearn

This app has two modes. One is a smaller set of pictures than SoundTouch but operates the same way. The other asks you to pick from three pictures after asking "Where is the...?".

ABC Phonics

This game incorporates elements of the previous two apps but also allows you to trace the word. Its probably more suited to 4+ year olds.

My First Couplets

This app is basically flashcards. BUT you can buy more categories of cards. AND you can even make your own cards with your own pictures and audio. Its useful if you want to hammer a particular word.

First words

This app is to teach the spelling of some early words. It has very good audio feedback.

Learn2Listen

This app is a smaller less refined version of SoundTouch. But still pretty good.

Ling 6

This is a simple Ling sound app.

The uses of these apps is really limited by your imagination. They can be used simple to hear a sound or word. They can be used to get responses to a "Where is the...?" question. They can be used in a multi-component request like "Find me the cat, dog and goat?". As I say... limited by imagination.

There are a heap of other apps probably more suited to school aged kids. These ones are good for pre-schoolers and new CI kids.

Free CI Book

Here is a link to a free book for parents of CI kids.

http://ebookee.org/The-Parents-Guide-to-Cochlear-Implants_1055039.html

MAPing

Here's a useful article on MAPing for CIs

http://www.hearingpocket.com/mapping.shtml

Another good CI comparison

Here is another good comparison of CIs

http://cochlearimplantonline.com/site/?p=2321

This is also a very useful site.


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General update

I haven't blogged much recently. Mostly I'm on facebook nowadays.

Also, this month as been mega busy. By the end of the month we will have spent time in Whangarei, Havelock Nth and Christchurch. It's a great opportunity to teach the kids about maps.

Anyway, I'll load some photos soon of our travels and mad Christmas.


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Useful comparison of CI brands

This is a useful comparison of CI brands

http://funnyoldlife.wordpress.com/cochlear-implants/choosing-a-brand/

In NZ we don't have access to Advanced Bionics yet.

What this article doesn't capture is the usability of the CIs. Cochlear leads here. For parents with little kids, this can be quite important.

Nucleus Freedom Instruction Videos

Cochlear have really upgraded their collateral and website. Here are all the instruction videos for Katya's Nucleus Freedom Processors.

http://www.youtube.com/user/CochlearAmericas?feature=mhum#p/c/4F3EF3B20A1E8614/1/v_NQYLqTBlg

Lunch

Bye Bye Truck

Huge moment this morning.

Katya finally said Bye Bye Truck. This has been a goal for our SLT and us.

bye by cat!

This morning Katya said Bye Bye Cat. This is a huge step from one word utterances. But the bye bye phrase is big because we have been working on that a lot.

She is saying lots of two word phrases now like yellow flower.

It's very exciting as it is the first step to sentences.


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Its been a year!

In a few days time it will have been a year since I changed from being a paid worker to being a full time stay at home dad.

I have had a little bit of time to reflect on the last year. It seems like time has gone very fast and things have changed considerably (for the better) since Oct 2009. I am incredibly grateful for those who have walked with me (in one way or another) over this last year.

It will be interesting to see what the next year holds.

2degrees and my iPad...

I was contacted by 2degrees after my recent posts.

They now have a page on setting up ipads. I'm not sure if it was there when I was trying to do so. I certainly couldn't find it. Anyway... here it is.

http://www.2degreesmobile.co.nz/microsim

They describe the process as a bit fiddly. It certainly is.

For me, I will convert my Vodafone SIM to a micro-SIM and use an adaptor ($7 on Trademe) to run it normally in my iPhone. If I need 3G in my iPad (like a Xmas when we go to the inlaws) I will swap it into the iPad.

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More 2degrees progress

I think I have finally had success with getting 2degrees working on my iPad. I had to put the micro-SIM in my iPhone and add some credit and purchase the data pack. I got a confirmation txt.

I also rang up and got a web password txt to my iPhone.

I then returned the SIM to my iPad.

In short you absolutely NEED an iPhone to set up an iPad with 2degrees systems. This is pretty poor and they need to sort this out.

My experience with 2degrees continues to be poor. The promised $10 credit hasn't been applied. When I got the web password I asked to talk to a supervisor. But they could not speak to me then and were to ring back later. Someone rang back later. Unfortunately I can not understand their ascent so i don't know their name and they didn't leave a phone number.

The 2degrees web site is not very good. It does not show transactions immediately. I still need to confirm that I have bought a data pack.

So.... I continue to recommend avoiding 2degrees until they mature their systems. I've also had recent problems with XT as well. While technically both 2degrees and XT are more suited to Apple products, Vodafone seems to provide a better implementation.


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Getting an iPad going on 2degrees

I have previously posted on getting an iPad going on the 2degrees network. Essentially I said it was easy.

I have now found that it is not.

It is easy to get going on a casual rate but that costs a fortune. It has proved to be almost impossible to get a iPad going on one of their well priced data plans.

The process seems to rely on you owning an iPhone 4.

The problem is the txt messaging SIM application that is required to buy the data pack. It has no way of receiving a txt. This means you don't get a txt confirming you have bought the pack. It also means you don't receive the txt saying the purchase of the pack failed because the moment you connected the SIM it chews 1cent of the credit meaning you don't have enough credit to buy the pack.

To check that the purchase of the pack is successful, you need to go on their website. However, you can not get a password to the website because the password gets txt to your iPad (and remember it can't receive txt)!!!

You can't get a password through their call centre either.

Basically you are stuffed. You have to buy the card AND more credit.

That doesn't seem such a big deal... If you know about it in advance. You can buy credit via their phone system.

That's if your name isn't Sym... In which case your credit card number is rejected by their system!

My only option is to buy vouchers from a service station... Which is pretty third world. Frankly I'm not sure it is worth the effort.

My current recommendation is to avoid 2degrees for ipads because they don't have their processes sorted.

I also wonder about their customer service. When, after 2 weeks, we finally got to the reason why I couldn't connect (despite regularly chasing them) and established that really their processes were stuffed for iPads, they gave me a $10 credit. This of course prompted me to try to add credit and then expose other faults in their system. A better customer service approach would have been to get me (customer) to the point I was trying to get to. That would have been a good customer experience... Not a poor one like I have had.

I won't be moving my iPhone from Vodafone anytime soon. Vodafone have looked after me well over the years.


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