Wednesday, October 1, 2008

Power mums

Well on this journey I have met my fair share of them! Mums that rock and make a huge difference not only in their own children's lives, but in the lives of many, many others lives.



Val has always been a power mum but she has just had a book released that she co-wrote with a speech therapist that worked with her children in their infancy.



Their book is called "I am all ears" - check out her blog "Cochlear Kids" to read all about it! Congratulations Val!!!
My mum has often said to me I should write a book about all this stuff and the stories that have come from our crazy life. I must confess it has been kicking about in my head for many years now but I haven't really, seriously put some time into actually doing anything about it....hmmm maybe Val has inspired me! Kath has been on my case for as long as we have known each other to get off my butt and write something...hmmmm.....

Thursday, September 18, 2008

And still there is more


My son is just a total crack up - he makes me laugh all the time, in part because he has inherited my love for the crazy, the immautre and the just plain silly!!






It was off to the audiologists again today to see how he is going with the new Freedom processor. Seeing as though he blitzed the sentence level test last time his audie told him he had to make it harder, just because he could : - )






So this time it was single words only, so there are no other words like in a sentence where you can help guess the word or the meaning by hearing all the rest of the information - just a word on its own. The words are on a pre-recorded CD and have been made with much time and care so that each word has the same volume across the entirety of the word and each word is at the same volume as the last.






So in quiet he scores 90 something percent about 93 I think it was.






But the best was yet to come, he turns in his seat looks at the audie and says "you know I'm not that sure about this CD you know?"






The poor audie knows he is about to commit mental hari kari but goes for it anyway and asks A to explain.






"....well you know...it is kind of like when the person says it they say the word all at the one level. That is not what it is like when people talk in real life is it? When people talk there are like accents on certain consonants and stuff when they say the word. When she says them on the CD there isn't any of that? Why is that? Why didn't they make it right so it is like listening to normal speech then?"






The audiologist had the very briefest glint of a passing "deer in the headlights look" then grins wildly at A and says "for goodness sake you are profoundly deaf you are not supposed to even know about accents on consonants, let alone hear them"....at which point they both just cracked up laughing!






I am actually really impressed with his audiologist, we have only just started seeing him as his other one retired. He treats him like the young man he is and empowers him to be involved in his hearing management. He talked at length with A today about using his FM and how kids at his age sometimes reject them. He made the comparison between a friend who kept making up reasons why he needed a new car, when in fact he just wanted to buy a new car. The audie put that right back on A, if you decide not to wear it then don't kid yourself or anyone else that it is because you can hear better, because that is not the case. If you are too lazy to wear it or embarassed to wear it then be up front and say it, don't pretend it is because you can hear fine without your FM.




I think that message plus the test results were just what boy wonder needed to hear, and that he will make the right choices with regard to his FM.

Friday, September 5, 2008

He has no damn right to be that bright

Lovin this title and it came from a really good friend of mine and was made in reference to A.


yeah he is a bright cookie, in spite of my parenting....afterall grown up mature responsible adults don't go around mimicking the voices of the Lego Darth Vader in the cafeteria video off the net, now do they??? well at least one does : - )


So the senior years of high school would be hard enough for any student without a hearing loss. A never does anything by halves, let's just make it even more interesting, let's see if we can have a go at the International Baccelaureate program (IB). The IB has as a component a foreign language and it is a compulsory requirement for the program.


Fortunately the language that A would be doing starts midway through year 10 and finishes midway through year 12, so he gets half of this year to see how he goes with the language before making the IB or SACE choice of stream for year 11 and 12.


He started Italian (yeah Jodi - Italian!!!) about 9 weeks ago. Last week was his first oral assessment. In true A fashion he put the time in preparing for it and wrote it all out. With spaces between lines it was about a page of writing. He had to introduce himself, his address, who is in the family, pets in the family and something about each member of the family - me he chose the word "bizarro" - yep and I love him too!!!

He cruises into my office at the end of the day and I asked him how the Italian oral went. He gets this flustered look on his face, runs his hands through his hair - at which point I am about to hyperventilate worrying about him - just as I am about to tip over the edge, this huge grin crosses his face and he jumps in the air, arms thrown upwards and a "Mum I aced it!"


In reality he scored 15/15 with only two minor pronunciation corrections - helllllloooo - did no-one tell you that you have a profound hearing loss??? Well yeah, but it sure hasn't made any difference to what this kid is capable of.

And if that wasn't bad enough!!! (well good enough really : - ) he was fitted with his Freedom processor for the N22 two weeks ago. We were visiting the audiologist to see how he was going etc and the audiologist decided to see just how well he was going with some sentence level testing.

He scored 94% in quiet and 86% with the background noise being equal to that of the speaker - pretty impressive. After he finishes he smiles at the audiologist and says, I was going to give you a really good answer for one of those sentences but I thought you would score me wrong and that would pull my results down. At which point the audiologist and I know we should know better than to ask, but can't resist the urge to do just that.

"Well" he says "one of the sentences was the house had nine rooms and I have just done all that for my Italian oral. So I was going to say the sentence in Italian not English just for fun" He then went on to say it in Italian for us. The audiologist was impressed but clearly was enjoying the banter with A, and made comments about how sometimes you really like people until you find out just how capable they are then you really go off them. He then told A what he wanted in feedback from him about his new maps when he goes back in two weeks time...when A did his "yeah yeah no problems" response, the audi quipped back with "oh and in Italian too please".

It was all great fun, but not a day goes by, now even 13 years post implant when I am not astounded by just what this young man can do!

Saturday, August 16, 2008

whooo hooo!


Now remember back to one of my first posts about what happened way back then happening for a reason and to help bring A back to the rest of the field...well.....

When A changed schools, his cohort were studying german and had been for some years so it was decided he wouldn't start german mid stream. Instead that time was given to learning support, which he used as study lessons really, using the time to catch up on any work and if needed seek clarification on any of his work.

During that time he was starring academically but never seemed to get nominated for any of the school academic awards. I worked out after awhile, he didn't qualify because he was studying less subjects than his peers.

I sat through many a school assembly applauding all the other scholars in the school receiving their well earned accolades.

So started year 10 this year, and no more learning support for A. He was taking a full load as the subject selection kicked in this year where the opportunity for others to drop the language came about. So it was back to a level playing field for A - well level if you call a profound hearing loss compared to normal hearing peers, a level playing field!

So on Friday, I didn't get to attend the school assembly....and yep good old Murphy and his law...the one assembly I didn't go to...yep you guessed it - A received an award!

BUT not just any award, oh no no no. It was an academic excellence award, given to two students in his year 10 cohort, making them both in the top 1% of the students in their year level!!!

YEP you read that right, he is in the top 1% of his year level in a mainstream school, even with his profound hearing loss!

WOO HOO!!!!

Do I sound just a tad proud??? That'd be because I am. He has an amazing work ethic and an inbuilt determination to always do his best. I am so excited that he finally received some public recognition and accolades for his achievements. Not only is he doing amazing things for himself, he sure is challenging a few stereotypes of just what is possible for a student with a profound hearing loss.

Perhaps this says it all

Below is a beautiful video from you tube, that I think really just says it all.What a wonderful dedication from his family to this young boy and all that have been part of their journey...enjoy.....

oh have the kleenex handy...


Friday, August 15, 2008

Yet more of the same


So after the excitement of day 2, it was on to more of the same for the rest of the week....

For me as his mother the things that most struck me were just what a successful young man he is becoming and how all those things I feared would never happen and was almost too scared to dream might happen for him when he was stuck down with meningitis, were there on show for me to see right in the here and now.

The laughter he shared about funny stories his co-work experience partner had shared with him about her upbrining and some of the funny stuff that happens on holidays.

How between them they decided that having just the two of them at work experience was great. They had each other to bounce ideas off of, yet not too many in a group that they wouldn't each get plenty of hands on practical stuff to do.

The fact they took turns typing up the report, obviously when he was typing, he would not have been looking at his co-work experience partner, yet was still able to hear what she was saying and get it down in the document they were doing on the computer.

Morning tea with the post-grad students of the department on Thursday. Having the confidence to join them for a coffee and some cake (his first cup of coffee I might add, and one he made with 2 spoons of coffee and some sugar; no wonder he was on top of the world!). He was able to talk to me about some of their projects and that Thursday morning was regular coffee and cake morning for the department.

I was waiting for his train at the station on Thursday night when an sms came through.


"My train is going to be late, stuck at Mitcham, signal failure. I will get to the station but it might be awhile".

I messaged back that I was at the station and would just wait there til he got there.


He was about 20 minutes late....and when he and I were driving home I realised, how like me he is in some ways. He, like me, is your glass half full kind of personality, always looking for the positive side of things.


As he walked from the train up the platform and we walked together to the car, I said to him "oh well at least you got to experience the highs and lows of public transport then"...he smiled and replied "Oh I didn't really mind, it wasn't that bad. At least it happened when I was on my way home, so it didn't really matter. If it had happened on the way in and I was late for work experience I would have been very disappointed." Yep finding the positive in what was possibly a negative situation.


Later I asked how he knew it was a signal failure..with his best eye rolling teen look of "what are you stupid?" look he told me that he heard the announcement on the loud speaker. He went on to tell me that this driver actually knew how to speak clearly because he could hear all the announcements of the station names and the signal failure announcements, unlike some of the other drivers. I know what he meant because I found it hard to understand them when we were on the dummy run the week before!


The week wrapped up with some time spent with the lecturer for the courses and the head of the department. It was an opportunity to ask any questions and find out more about the courses they were interested in. Again another person whose speech he was unfamiliar with and was unfamiliar with him and his hearing loss, again piece of cake!


He came home with some written notes and proceeded to ask me about the equivalence of the maths in the IB course compared to the maths in the SACE course because if he didn't get them both covered off in year 12, he would have to do a summer school course, and he wasn't doing that if he could help it!!


On the last day their supervisor was recounting stories of some of the students she supervised, some who were partnered with bossy partners who answered all the questions, took control over all the pracs and let their partner do nothing. Their supervisor then shared with them that A and his co-work experience partner were the best 2 students that she had worked with so far. She really liked how they worked as a team sharing the work, the answers, the practical write ups evenly between. It appears A and this young miss felt the same about their week together too. That they both had similar work ethics, often forgoing break times to get the experiment they were doing finished on time. They both contributed to everything they did and perhaps best of all they did it with hard work and humour. They both laughed a lot during their time together and had a brilliant experience in their work experience program. The Uni department concerned also earned many accolades for the amazing, structured program offered to them over the week.

For us as his parents. the end of the week was a really brilliant opportunity to look back at far we have come on this journey. To think back to this broken little boy we took home from the hospital after meningitis nearly took him from us. The fears we felt at that time, and then magnified ten fold more when we found out it had left him profoundly deaf.

In the place of that tiny broken toddler now stands this amazing 6'5" young man with the world at his feet. The confidence, the maturity, the speech and language, the positive attitude and the hard work ethic - really anything is possible. I wait and watch with wonder to see just what the future holds for my young man. I have already seen so much that he has achieved both personally and as an amazing role model for younger deaf kids and as a breaker of stereotypes for those that might place limitations on kids because of a hearing loss. Those that have the pleasure and perhaps even privilege of working with him, know only too well that hearing loss or not, anything is possible.

To this day many people will say to me "oh you and hubby have done a brilliant job with him and all the hard work you have put into him"....my response is always the same. I smile appreciatively and graciously accept their kind words and then remind them..." thanks for that, but really it has been up to him. We could have worked our arses off with him but if he didn't want this for himself, he would never be where he is today. This is his doing, his hard work and his determination that his deafness was never going to stop him from doing anything he set his mind to."

And so it continues


OK so I got a bit slack - but back to finish this time - I hope!


After the very successful first day it was time for day 2. I told A he didn't need to sms me that he had arrived safely, I would assume he had unless he contacted me to tell me something different. We had also arranged that I would collect him from the train station at a certain time, unless he messaged me to say he was on the later train. It was a tight time line from finishing at the Uni to getting on the train to come home on the earlier train.



So I waited for him to arrive at the train station. It was kind of sweet, when I saw the train approaching, I left the car to stand near the platform, so he could see me and follow me to our car. I watched him alight from the train looking the confident, independent teen, well except for that quick scan to see if he could see me. When his eyes found me, I saw that slightest little look of relief sweep across his face before he resumed his, "I'm a cool teen" look. It kind of reminded me how much of a journey he was having on this week and how proud I was of him for doing it all, but how my just being there within view, reassured him that everything was on track.


As he jumped in the car, he told me that he had no problem getting to the train because they had finished early that day. Welll then the rest of the story came out. Their supervisor had some errands she needed to run during lunch that day so both the work experience students were afforded a 90 minute lunch break. They decided to walk up into the shopping precinct together and then A went his way to Gamesworkshop and EB Games, and she to look at clothes!



After awhile A headed back to the Uni tea room and was working on finishing up recording in his work experience journal, when his female co-work experience student came in looking crest fallen. It seemed that this young miss had found a gorgeous jumper on sale that she wanted to buy, but the sale price was $30 and she only had $26 on her. She asked the store to hold it for her as it was the only one in that colour, in that size with the promise of her return to purchase it the next day but the store refused.


Well of course this gorgeous young man, that has turned out to be so amazing, not entirely sure how that has come to be given his parenting from yours truly, but there you go! He being the chivalrous gentleman that he is, offered to give her the $4 difference so that she could get her jumper. Then together they negotiated with their supervisor to let them finish a little earlier on that day, and have a shorter lunch the next, so they had time to go back into the shopping precinct at the end of the day, to get her jumper and still make their respective public transport journeys back home! The supervisor agreed and so off they went to get the jumper. Coincidentally A also came home with her phone number too! Although I don't think the he has contacted her since though.


Day 2 was also another day of interesting work and write ups and he and his co-work experience partner seemed to be getting on well together and working well as a team.