what a week!

Hmm it has been awhile since I have blogged here - didn't realise quite how long!

I know it was the case for me and I know speaking to parents of newly diagnosed babies it is the case for them too, when you find out your child has a hearing loss, all you want to know is that they are going to be ok!





I can remember all those worries as if they were yesterday, would he have friends, how would he cope as he got older etc etc etc.





Last week was such a wow week and has made me reflect back to those feelings at that time, and how far we have come since then.





Last week A has been on work experience week. He chose to do it at one of the Universities here in the school of Chemical & Pharmaceutical Engineering. The work experience program itself looked daunting, but for us as his parents all the rest of the stuff was just as daunting.





OK so he is a teen, and maybe we have protected him just a bit *smile* but for one reason or another, it hasn't happened that he has needed to travel on public transport on his own. Being able to head into the city every day while we were working meant that this was going to happen during work experience week - a somewhat scary thought for his parents!



That and coping with people he didn't know, expectations of him from people that didn't know him and had probably never dealt with a person with a cochlear implant!! Oh it made me want to wrap him a in a hug and keep him safe with me : - )



Of course it was never going to be like that! Of course he would go, it was an ideal time for him to grow, take on some new challenges - I mean for goodness sake he is old enough to get his "learners"!



So the last week of the school holidays, A and I did the dummy run on the train into the city, walked to the Uni and even met one of the people of the work experience program when we went to find the office he had to meet at the following Monday. It nearly killed the both of us being up early enough to catch the train just after 8am!



That Sunday night we chatted before he went to bed that he was a little nervous about the next day, not so much the train trip on his own for the first time but more so work experience and what it would be like.



Of course I made the mistake of opening my mouth and letting B know that - no he didn't tease him - read on to find out why that was a mistake!!



I didn't sleep well Sunday night - you know worrying is part of the mum job title! I kept dreaming that things happened and he was stranded in the city! I mean really he has a mobile and all the wonders of modern technology at his disposal - so why was I worrying???



Monday morning came, B and I headed off for school, hubby and A left for the train station. I had asked A to sms me when he arrived at the Uni just so I knew he arrived safe and sound. A short time later hubby called to say he had deposited A at the station and offered to let him sit in the car awhile, but A was having none of it, he was out on the platform ready to go.....so hubby drove off leaving the image of a lone soul at the station in his rear view mirror.



Then around 9am came the sms, he was there no worries, and of course I was under instructions to sms hubby when I knew that our "baby" was safe!



I had to be in the city that first afternoon for a meeting so I arranged to meet A at the Uni and drive him home - well I don't think he shut up the whole way home, except the momentary stop in order to draw breath.

First he started talking to me about a friend "Ben" on the train - I thought at first it was another school friend going to work experience that happened to catch the same train. Nope Ben was an arts student at the Uni, and apparently he had to make a mad dash sprint for the train because he was running late and nearly missed it - oh and that was because he had one of those mornings when you keep hitting the snooze button thinking to yourself "just 5 more minutes, just 5 more minutes" and next thing you know you are running late and have to sprint for the train.

Of course this information was gleaned in a mutual conversation on a moving, rumbling train with less than brilliant acoustics chatting to some guy he had never seen before, but who between the two of them, had struck up a conversation on the way into the city!

After we exhausted that subject it was on to the supervisor and the photos of the 2 dogs she had at her desk in the office. He was suggesting to me what breeds he thought they were but that he didn't get a chance to ask because there was so much work experience related stuff.

Then it was on to the student paired with him for work experience "Tatiana". He shared with me, what school she was from, some stuff about her parents, and her country of birth, the subjects she was doing at school blah blah blah blah...

Here was me worrying about how he might do dealing with people and what if he had trouble understanding them??? Trouble understanding them, sounds like he drove them nuts involving them in conversations all day!

Although I did ask about him and his haste to get out of the car in the morning at the station...."oh mum I love Dad, but he WAS DRIVING ME NUTS!.....asking me if I had this, had that, did I know this, know that....I couldn't stand it, I had to get out!

Oh and telling Master B of A's nervousness about day 1.....turns out I was not the only one that didn't sleep well..apparently he tossed and turned all night worrying about his big brother going on the train by himself for the first time and into the city and work experience and all that...what a beautiful soul my son has, his sensitivity and caring takes my breath away some days.

And that was just day 1 - I have 4 more days to post yet!

But there are more lessons..

This blog was set up to write about our experiences raising a child with a hearing loss and what that journey has been like....

But there are 2 kids in this house and there have been many more lessons from the younger sibling of the household.

B was had just turned one when A was hospitalised with meningitis. It was a crazy, crazy time and he was cared for by a variety of friends and family during the days and then with myself or hubby in the evenings. Then came the months of follow up appointments, cochlear implant candidacy evaluations etc etc. My mum was a godsend and was the one that spent much of the time with B during the times that I couldn't.

In fact I watched the video of A's cochlear implant activation and I love that B is in there having just woken up from his sleep and walking around. making himself known. I love that there is footage of him from a time when everything was such a blur including all the beautiful things that were happening in his life.

Did he miss out during that time? Does he have any memory of that time or feels like he did? I don't know, but as a parent there will always be a level of guilt that maybe he did. Yes the rational, science brain tells me that there should be no guilt, since it wasn't like I had any choices about it at the time!! But it seems that guilt goes hand in hand with maternal instinct, you just can't escape it.

In those early days we made lots of time for him to spend one on one with mum or dad, some special time of his own, and we still try to do that today, to make him know the he is as loved and as important as his brother in this family and the fact he doesn't have a disability doesn't make him less important.

It isn't as though we feel any differently about the 2 boys but the realities are that A's life has its share of complicating factors like appointments to audiologists, follow up information with school etc etc.

If it weren't for the fact they looked like twins in those Pixie baby photos they take in hospital, I would wonder if they are in fact related! They are like chalk and cheese - my boys.

A is the superconfident, assertive, positive, academic - loves learning and all it encompasses, very organised etc etc.

B is the flipside of the coin. For a long time he has had a low level of self confidence, he so desperately worries what his peers think of him, wants to just fit in! He loves music and is a great guitarist. He loves the hands on stuff, like tech, like science experiments, like sport...but the written..oh what a bore! Not his cup of tea at all, which of course doesn't mean he doesn't know the content, just means he can't be arsed writing it all down on paper - the minimalist approach as I call it. His organisation is greatly improving - and well, we had plenty of scope for that!

Often childhood experts will have chapters in books dedicated to sibling order and the impact of birth order on personality. One of things they regularly say is that the second child tends to find the niches not occupied by the first child. A way of making themselves different and not trying to compete in areas that their older sibling already shines in and has a couple of extra years practice at it!!

I can see that in someways in B but I see many other things too. I see that insecurity that plagued me as a child...if I walked into a room and someone laughed, of course they were laughing at me! That need just to blend in was so strong. I have shared this with B and that how when he gets older he will see how much this feeling is actually caused from within, but equally shared that I know my words won't cut it with him in the same way my parents words didn't cut it with me. It is one of those life experiences you need to learn from yourself.

I also see a lot of my brother in B. He was never that keen on school, writing or that stuff either...as for organisation, I will never forget the day the spaghetti bolognaise from home economics escaped his bag and filled all of his books on the way home from school - that was a keeper! Yet he has become the most amazing successful adult. He completed his trade, went on to study other more technical aspects of his trade with such understanding and application of difficult concepts it blew my father's mind! Now in a time poor of quality of tradespeople, he is on top of the game, being headhunted for positions left, right and centre.

As parents who both loved school and went on to be tertiary educated, there is kind of an inbuilt assumption that your kids will be that way too. An incorrect inbuilt assumption.

B has taught me about listening to your child! Listening to what they say and equally what they don't say. It is about acceptance and love of your child for who they are, the real enjoyment that comes from getting to know what makes them tick and celebrating with them the things that they excel at. It is about their dreams, their hopes, their thoughts for the future.

B is also on the fringe of becoming an amazing young man. He is starting to gain that confidence and step out from the shadow of his older brother which in itself is an amazing thing to witness. He is starting to think about what he might like to do and finally is comfortable with saying out loud that which I have known for so long - he isn't interested in going to Uni, he doesn't want a desk job or a career in academia. He wants to be out there doing things, experiencing life, at this point he is thinking about his music and guitar as a future pathway. He is a really loving, caring person, unless of course you are out and see his friends in which case it is 3 feet in front or behind, anywhere so long as it doesn't look like he is out with the olds : - )

B is yet another shining example of teaching me more than I have taught him on this journey. He is the one that has to yet to work out what his niche might be but the journey to that point will be an exciting time of discovery for all of us.

Truly blessed

Well this week has had its share of stresses, most of them generated by work...



However this week we picked up boy wonder from school on his return from a 4 day camp in the north of the state...he had a ball and came home with many stories to share.



Of course the funniest of those I shared with people that know the both of us and equally know his crazy sense of humour.



Quite a few times in recent months when I have shared a funny story or comment that A has told me, I have had similar responses from those around me.



Most of these responses revolve around the fact that I am a lucky mum that my almost 16 year old still shares this stuff with me....kind of got me thinking about that.



That and a recent post on a discussion forum I am on, in which another mother referred to her son and his character traits and how he had turned out a better person than she ever hoped to parent.



This is very much the case with A. He is most assuredly a better person than I had ever hoped to parent. He is sensitive and caring with empathy for others. He is a hard worker and applies himself with such determination to his studies. Yet despite being a hard worker he has a wicked and goofy sense of humour, and most of all the sunniest disposition, the real glass half full kind of perspective on life. There is not much that ruffles his feathers.

Whilst parenting has its share of challenges and parenting a child with a disability a few more, this blog's name comes from my life's experience raising A. I have learned far more from him than he has learned from me on this journey.

From A
I have learned what it is to be resilient.
I have learned what it is to believe in yourself.
I have learned that even in the toughest times, it is good to be able to laugh at yourself.
I have learned the true meaning of social justice.
I have learned trust, love and the power of maternal instinct.
I have learned that no matter what it is still possible to look at the glass half full and how much better that makes the situation and your life in general.

Many parents lament the difficulties parenting their child, or the things that don't turn out quite right in life.

For me, I am so truly blessed to have the privilege of having this young man in my life and to have the honour of raising him. He is truly a shining of light of just what is possible and a testament to the description I save for the very special people in life "one of the angel's that walk amongst us".

Bullying and the tough bits of growing up

When you stop to spend some time reflecting on your own childhood and those tween years to adulthood, there are not many of us that would say that it wasn't a tough time.

Often times it was tough because we made it that way for ourselves. We were so worried about what peers thought, when we walked into a room of people and someone laughed, well of course they had to be laughing at us! Truth beknown they probably didn't even see us come in, so engrossed in their own conversation.

I think it is harder for my kids than it was for us. The world is a changing place and not all those changes are nice ones. The precious childhood naievete that was there for my generation seems so hard to keep for our kids.

As parents all of us worry about our kids, will they be happy, what if they have no friends, what if someone picks on them? Add a disability into the mix and that fear goes straight to Def-Con4 (well that is what Michael Kyle of My Wife and Kids would describe it as!)

I think we all feel this need to protect our kids from the nastiness of life and that theirs shall be a life of blue skies, icecream and stuff like that. However is protecting our kids always the right thing to do?

Any parent you ask will either have a child who has been bullied or knows someone else whose child has been. Whether we like it or not bullying happens! No that doesn't mean we shouldn't try to stop it but it does mean we need to be aware and we need to support our kids should they find themselves being bullied.

Many parents of children who have been newly diagnosed with a hearing impairment are beside themselves at the prospect of their child being teased or picked on because they have hearing aids or a cochlear implant, or perhaps because their speech might be a little different.

As the parent of an older teen, I have to say that the reality is that bullies don't discriminate in that respect. They pick a target they think they can "beat" and they will find what it is that might upset that child. It could be a hearing loss, it could be red hair, a big nose, glasses, being too short, too tall, too fat, too thin - the list is truly endless.

When A was around 11 years old we had some real issues around bullying. There was a small group of boys making his life hell at school. He of course reported it to the staff who would deal with each incident. Unfortunately though they spent their time putting out spotfires rather than dealing with the culture of bullying itself. They didn't look at why the bullying was happening and proactively looking at ways to stop it, instead they just chastised the guilty each time that it happened. After awhile A gave up reporting it "what's the point, mum? They get told off, get shitty at me and then do it all over again the next time anyway?" How do you thwart that kind of logic from an 11 year old?

The kinds of things that were happening were pretty cruel. One group of boys would call his name and then when he turned around they would start speaking without their voices. Obviously the intent was to make A fear that his cochlear implant processor was not working properly - yeah real nice guys! Sadly for them they picked the smartest kid going around to try that on! "What they don't think I can still hear all the background noise around me and know there is nothing wrong with my processor and it is just them being morons?" Yep 1 - 0 to A!

There was one particular child who was the instigator of much of this behaviour. I have to tell you as a grown woman it took much of my self control not to give this kid a such a serve that it would be years later until his nose hairs decided it might be safe to sneak back out again. My blood boiled at the mere sight of this child.

He tried the group approach and got nowhere, so then he tried again going solo and calling A " a freak"...and then when that didn't work, he started in on A's younger brother, calling him "the freak's brother"....being somewhat younger and less sure of himself, this taunt did hit the mark and caused many problems at home as it created resentment of A by his younger sibling as he was seen as the reason for the teasing.

We all knew that a change of schools was imminent, not just because of the bullying but due to the program pathways of the school as well. So we did what we could during that time.

So what did we do? All that we could at that time. We talked and talked and talked some more. A and I spent many hours engaged in conversation about bullying, why some kids bullied other kids. That yes it is unfair, and yes you want to smash his face in (stand in line because your mother is first!) but why that actually doesn't solve anything in the long run. The more we talked the more we were able to look at the bully in a completely different light.

The bully was from a family of ethnic origin that historically does not deal well with a disability, the kind of place where you might hide family member away rather than have them go to a mainstream school like everyone else. This child's father was domineering, arrogant and opiniated. So no matter what it took his boy had to be number one, he had to be the best at everything and heaven help anyone that suggested perhaps he was not. This boy was small for his age and he struggled with his school work. Fortunately for him his one saving grace was he was good at soccer so at least his old man was off his back for 60 minutes a week!

So there is the bully, under the hammer from his father for just about everything in his life, but especially being short and not doing well at school.......contrasted with A, who has always been tall for his age and who is academically gifted. Despite dealing with the pressures of listening in class with a hearing loss, A was top of his class for all his academic subjects. No wonder this bully saw red...he had perfect hearing and he couldn't come close! The jealousy he felt turned to rage that was vented at A in the form of bullying.

Whilst we were both still pretty mad at him for treating A the way he did, we get a chance to empathise with this boy, and have a think about how tough his life was trying to live up to his father's demands when he really didn't have what it took to do that.

Some years later when A and were deep in conversation (yep I'm one lucky mum this young man & I engage in conversation quite regularly still on the deep and meaningfuls of life and he is just shy of 16!) During our conversation we must have been discussing bullying or teasing or something. He went back to talking about what it was like when he was being teased and picked on. And then he shared something so profound I will never ever forget it...he said that the reason he made it through that time was because every day he had a safe haven to come home to. He said he knew he only had to deal with it while he was at school, once he got home he knew he was coming home to a house full of people who valued him for who he was and who loved him no matter what. That was the safe haven that gave him a break from the crap, the time to unwind and build up his inner strength to go another round the next day.

So whilst on the one hand it was really like someone took a knife and stabbed me in the heart and spun it around a few times, on the other hand it showed me just what resilience to the shitty stuff in life this experience had taught him. He had found strategies to get through the tough stuff and strong sense of self belief that with the support of those that loved him, he could get through anything! Pretty powerful stuff for a teenager to share.

Pretty powerful stuff for all of us as parents - keep those communication lines open, no matter what small drip of conversational response you might get. Make sure your kids know you love them warts and all. Hug them, kiss them (if you are allowed to : - ) or a simple ruffle of their hair on the way through - that subtle contact lets them know that you love them. Where you can, show an interest in their music (I know brace yourself and into the breech for some of you but you can do it!), their friends, whatever it is they choose to share with you. Don't judge them too harshly: you were young once too you know, did you always do what you were told?

Fast forward to his new school, loves it, heaps of friends never home, always out socialising somewhere. Last year a new student to the school joined A's class. In one particular class the teacher heard a group of boys telling another to "shut up". She thought it was teenage boys being teenage boys and told them to settle. At which point one of A's friends jumped up to report that this other student had called A "deaf boy" or words to that effect, which coincidentally A didn't even hear but his friends did. They were outraged and that is why they were telling this other kid to shut up. So for every bad thing that happens, here is the good that comes of it. A didn't need to say a word, his friends were the one to take this student to task for insulting their friend! His friends had understood that such treatment was wrong and should not go unchallenged.

So whilst it pains us terribly to see our kids going through the tougher stuff of life that ultimately we can't control, it is part of the journey of passage. Kids need to know that sometimes life just plain sucks and you can't change it, you just have get through that stage the best way you can and then move on to bigger and better things. Their life is not defined by the things that happen to them, but rather how they handle the things that happen to them.

As parents never underestimate the power of your love. They might not always show it, or wear their hearts on their sleeves, but in their hearts they know they are loved. They know that when they need them, their parents will be there for them, and that is the most powerful of gifts you can give your child.

The stuff of dreams

It has been a big few weeks in our household. A is more travelled than the rest of our family these days.

He went with the schools gifted and talented trip to Canberra where they spent 3 days looking at all kinds of things. They visited the war memorial, parliament house, old parliament house, the National Gallery, the Australian Institute of Sport and other places of interest in Canberra. Despite being almost 16 years of age, A recognises the huge benefit he gains using his FM in noisy environments. So at a meeting prior to the trip he negotiated with the teacher accompanying them that they would hand the transmitter to each of the people speaking. At the end of the day A would take it back to charge it up overnight. The whole system worked beautifully and he could enjoy standing at the back of the group (where all cool Yr 10 boys stand on these kinds of trips!!) and still hear everything that was said. Using his FM gave him the freedom to just hang with his mates and still benefit from what the speakers were sharing with the group.

On his arrival home, his best friend headed off for a different school camp, the one he will head off on in 2 weeks time. So by the time his friend returned, they had missed out seeing each other for almost 2 weeks. As his friend lives near the school, he wanted to go around and visit even though his friend hadn't been at school that day - too tired after camp no doubt. I told A he would need to call to make sure that was ok first. He picked up the phone in my office and called his friend. I left the room to do some stuff and returned to find him still talking on the phone. Yes they had organised he would go over there and he would actually be there in person in under 30 minutes, but no that didn't mean they should stop talking now. So sitting in my chair, on my phone A is giving me the typical teenager hand waving meaning "go away can't you see I am busy here?" I had plenty of other stuff to do so I left him to it.

When I returned he was off the phone and relaying to me what his friend had said about camp. I listened on as he gave me more and more details of how the camp went and that his friend didn't really think that much of this one compared to previous ones. As I listened to him go on and on and on, a warm glow started from the inside. It started in the cockles of my heart and then it started to spread. It spread all the way down to my toes that tingled in delight. It spread all the way up my body, culminating in the biggest smile across my face. So why was I a grown women, sitting there grinning like a cheshire cat?

It was because when meningitis robbed A of his hearing, and I heard the words "profound hearing loss" and I felt all of my internal organs shake in that soundbooth when we tested at 90dB and yet still he didn't hear it, I was devastated. I feared for him and what his future might hold, I was scared to death that maybe he wouldn't have any friends, he wouldn't be able to go to school with his hearing brother. Granted these were fears from a position of ignorance as to just what is possible, but it is a position that I feel many people who don't have a friend or relative with a hearing loss, may well still believe. At that point I knew nothing about cochlear implants, auditory verbal therapy (AVT), FMs or anything else.

At that time I never dared to dream that what I had just witnessed (my teen chatting on the phone to his friend) might even be possible! I never dared to dream that he would turn into this amazing young man, a young man full of self confidence, achieving both academic and social success in his school. Equally a young man who whilst on the flight home from Canberra generously offered to pay for a fellow student's drink as she had no money left and was feeling unwell with a headache on the flight home.

So for parents just starting out on this journey, may you feel the joy of this post. May you just get a small snapshot into what life may well be like for your child when they reach their teenage dreams. For you as parents, take a moment to catch your breath, but most of all take a moment and dare to dream! Dare to dream about just what is possible for your child.

Point of Perspective

This week provided me with an opportunity to see just how we have come in the 12 years since A lost his hearing after battling meningitis as a 2 year old. Perhaps more accurately how far I personally have come.

As part of trying to help parents, our parent group is reaching out to parents at that time of diagnosis to support them in a way that can only be done by another parent who has been there.

The implementation of screening of the hearing of newborn babies is a great thing. The sooner their hearing loss is identified, the sooner decisions can be made with regard to hearing aids and method or methods of communication to be used with the child. However it seems to me that is also very much a double edged sword. How difficult is it to be the mother of a newborn baby being so unsure of yourself and what to do and questioning whether in fact you can even do it right? Add to this then the news that your child has a hearing loss! In the majority of cases children born with a hearing loss are in fact the children born of hearing parents, parents who by and large have had no exposure to deafness before the birth of their own child.

This week saw me call a parent to see how she was going. Her child was diagnosed as a newborn and she had struggled with that diagnosis. In what seems to be the true characteristic of motherhood she had agonised over what she had done differently in this pregnancy compared to her first, what had she done differently this time "to make her child deaf". Despite the fact it had been some months since that diagnosis, her voice cracked and I could feel her silent tears as she tried to hold it together for my benefit during our call. I tried to reassure that she had done nothing wrong, these things just happen.

As someone who is so much further down this road, it was a real point of perspective to be able to hear her pain and whilst really empathising with her, equally not be swamped by that wave emotion but rather be that shoulder for her to unburden on. I shared with her that it was ok for her to grieve. That is not in anyway to suggest that her child was less than perfect because of his deafness but rather grieve for her plans for her future, she hadn't planned to parent a deaf child. As a hearing person with no prior knowledge of deafness, she sees her son's loss of hearing as a loss and so feels a great sadness at his loss. It wasn't part of her plans for her future or his that she would find herself answering questions from other kids in the playground about hearing aids and what they were for. This notion of grief and the need to allow yourself to feel it, is touched on in that wonderful piece "Welcome to Holland".

Perhaps what struck me most were her assertions that she just wasn't a strong person. I tried to share with her that most of us weren't until faced with raising a child with a hearing loss. It is not that we suddenly had our hearts turned to stone in a sea of bitterness that made us go out into the world strong bitches that would fight the world as soon as look at it. Quite the opposite in fact!

We started this journey but one step at a time. We looked at each decision we had to make by gathering as much information as we could and making our best shot at an informed decision for our kids. Not all of them were going to be right and we might change our minds along the way but none the less they were made with love for our beautiful kids. Around us we found the most amazing support - from caring professionals, from other parents of deaf kids, from our partners, our families, our friends. It didn't make that grief any less, it just helped us gain some perspective.

With each decision we made, or hurdled we climbed over, we grew from the inside out. We took back control and we made it our part in life to support our kids in the best way that we could and that we would be our kid's advocates, for despite the best intentions of the professionals entrusted with the care of kids, they were not necessarily going to be there for the long haul, we as their parents sure were.

For many of us the journey made our hearts softer, more open to the suffering of others. We have become greater champions of social justice, either just in deafness or even in the wider field of special needs. Many too feel a strong sense of the need to give back to others who find themselves where we have walked before them.

My call with this parent, brought back many memories about what an awful place it was that she was in right now. The place of darkness, guilt, fear of the unknown and mostly fear for the future. Oh she loved her son, just as much today as she did on the day he was born, but what she needed to know most was "would he be ok?" Her head had filled with fears about him being teased at school for his hearing aids, or what if his speech wasn't normal, would people tease him, what if he never found a partner, got married?

From my point of perspective 12 years further down the track, it was my privilege to hold out that warm glowing light at the end of the tunnel. Despite her fears for herself and her son, they were both going to be alright. They were both going to grow and learn from this experience and her son was going to be ok. It wasn't going to be an easy, quick fix - no matter what choices they made for him in the future, it was going to require a commitment from them to support their son, but it was a commitment in which they were not alone - there were so many people there to offer them a hand, to help them up on the tough days, to share the greatest of joys on the good days.

I am going to call her again in a short while to touch base and see how she is doing. The thing is right now she doesn't really have a clue of just how strong she is and what she is capable of doing. She has no idea how this experience will change her and her perception of herself and what she can do. So how am I so sure that she will experience and be all these things - because I have also walked that path before too. I have walked the path from fear of the unknown to a quiet strength and resilience in the knowledge that we did make it through the tough times and have come out the other side, not only stronger but much much better human beings, with a real sense of commitment to humanity and supporting all its members.

Christmas and a Brighter New Year

I don't actually remember much about that Christmas, it was all really just a blur.

I think as much as we must have celebrated Christmas with the family, if for nothing else than for those beautiful boys, I just don't really remember that much of it.

We were all just trying to stay a float at that point I think...it had been such an amazing roller coaster - almost losing A, him surviving but then discovering his hearing loss, then the hope of an implant, oh my goodness no wonder we were just emotionally wrung inside out!

At this point I guess we were in much the same position as most hearing parents who find out their child has a hearing loss. Initially we thought because A was so deaf he would not benefit from hearing aids and would need to learn Australian Sign Language or Auslan.

The thing is that for most of us, if you have never had any exposure to someone who is deaf, then really what do you know about deafness? If you were like us, not a whole hell of a lot.

So during the very difficult times we were guided by the professionals around us and we listened to what they told us and made decisions based on that.

For many people who are not connected to deafness or hearing loss, they are completely ignorant of the divide between members of the Deaf Community and hearing parents of deaf children when it comes to cochlear implants and young children and babies.

To be fair it is not all members of the Deaf Community that feel this way, there are some very warm, very welcoming members who are genuinely interested in how are kids are going with the cochlear implants and how they do at school etc. However it has to be said there are some members who are down right abusive to parents who decide to implant their children. Only in recent weeks, a friend and fellow blogger, was referred to as a child abuser because her son had been implanted when he was too young to have a choice! This is not an isolated case, sadly many parents, myself included have been labelled as child abusers for having our children implanted with a cochlear implant at such a young age.

The reasons for the oppposition are not always the same.

For some the opposition stems more from the pain and trauma of their own experiences as a young deaf child. For the past generation, there were children who were given hearing aids that really provided little or no benefit. They did not have access to the new technology hearing aids we see today or to cochlear implants. So these kids had technology that simply didn't give them enough hearing for them to be able to hear the sounds of speech, yet they were expected to hear and learn to speak. Those that had picked up some sign language, were on occasions forced to sit on their hands so that they would not use sign language. Clearly this kind of treatment of young children, where sign language was the only useable form of language for them, was barbaric and cruel. Many adults who went through these kinds of experiences are very bitter and angry about being forced to try to speak (especially if they later discovered sign language and an ability to communicate!) Some equally are resentful of their parents for forcing them to endure such treatment in the name of "oralism".

Unfortunately what they do not understand is that the experiences of our children with the newer technology is not the experience that they had. However for some no amount of blogging or trying to convince them will change their minds, they are just totally closed to the idea that being able to hear and speak is both possible and something that the children themselves want as well. I suspect that perhaps the pain of their own experiences prevents them from seeing any other alternative.

Another argument is the notion of the use of sign language. Many advocates of the Deaf Community believe all deaf children should learn to sign. In fact some will go so far as to say that they are born of Deaf Culture, and such sign language is their native language and that they should learn it in order to be with their own kind. There have been many online discussions about this notion of culture. For most people culture is defined by family, where you live, life experiences etc, so that the notion of being born into a culture does not fit with this ideal of what we believe culture to be.

In A's case he was born hearing, and heard for 2 years, then lost his hearing, so what culture does that make him then? A foot in both camps?

There is also an increasing push now for all deaf children to learn sign language, well at least that is what many members of the Deaf Community would like to see.

When A was diagnosed and we were waiting for his implant surgery, we were not that aware of all this controversy. We took our cues from the professionals we were working with. At that point in time the studies that were about concerning children with a hearing loss and their language development and levels of attainment, were consistently showing that Auditory Verbal Therapy (AVT) was producing the best outcomes for young children. Children with the benefit of the kind of hearing cochlear implants were giving them, were clearly benefitting from AVT.

In those months whilst we waited for A's surgery, we were hopeful it would work and he would hear again, but the doubts still swam around in my head. What if it doesn't work, then we will all learn to sign?

Now here's the thing - it isn't like I have anything against sign language because I don't. In the 2001 census data the number of Auslan users was around 6,500 out of a population of nearly 19 million! So clearly the numbers of people that can communicate with fellow auslan users isn't that high.

The other thing for us was that we knew spoken English, we didn't know Auslan. Whilst many proponents of Auslan suggest that we should have learnt Auslan and taught A to both speak and sign, this was near impossible under the circumstances. We had two boys under 3 years old, we were learning about deafness and what it meant and some days we were just trying to put one foot in front of the other. In essence we would have needed to learn a foreign language to us, at a fast enough rate to keep ahead of A to ensure his full language development. It wasn't that we were not willing to do whatever it took for A, because we were, but at that point we believed spoken language was the way forward for A.

It is my firm belief that parents must make what they believe to be the best choice for their child at that time. I personally know of parents whose children had more hearing than A who chose to educate their child using only Auslan. I didn't understand their decision then and I still don't, but I respect their right to make what they feel is the best decision in the best interests of their child.

So for us it a cochlear implant and AVT.

In that month or so between setting the date for surgery and actually getting to that point, we diligently put in A's hearing aids every day. Quite clearly he could two tenths of bugger all. He never responded to sound at all, but bless his little heart, let us put these chunks of useless plastic in his ears every day.

During that time we had our first visit to the Cora Barclay Centre - WOW, now there was a light at the end of our tunnel. I can remember one of the therapists telling me if all went according to plan we could expect A to use his hearing from his implant to learn to listen and speak. Could it really be possible, did I dare to dream it might be true????

One day while visiting the Centre we met another family of a child not much older than A who already had a cochlear implant. Well there it was, as plain as the nose on my face, this little boy in front of me, turning to his mother calling his name, answering her questions, his speech quite easy to understand...oh my goodness, that light in the distance was shining a little brighter.....

Of course we had to go through the routine hearing aid trial which meant many hearing tests along the way. Same deal for A, hold the block to your ear, drop it in when you hear something...uh-ha, no problems....well except for the fact I can't hear the instructions and I can't hear the damn noise to know when to drop the bloody block into the damn bucket! It sure was a frustrating time, most of all for A, he was only 2 and 1/2 years old with the patience to match!

Before we knew it surgery day had rolled around, we were basket cases by then. Were we doing the right thing, how would he go with surgery????

Funny thing happened just before that though. I told you before about the most amazing, wonderful man who was our ENT and the surgeon that did A's cochlear implant surgery. Well he believes that parents of kids with a hearing loss have enough to deal with, without heaps of bills, so in essence whatever Medicare or private health rebate to parents paid, is what he charged. Yep not a cent more! Truly this man (though now retired) is an angel that walks amongst us.

Well clearly one of the more unscrupulous, money grabbing private hospitals didn't feel that this doctor was making enough surplus money for the hospitals ever gorging coffers. So in a nutshell they removed his license to operate in their hospital and gave it to an orthopedic surgeon instead - heaven help those orth patients, they would have been paying big bickies then!

So by the time A's surgery had come round we were going to a different hospital, one his surgeon hadn't done an implant surgery at. True to form though, our doctor had been in explaining things to the nurses that would assist him, showing them videos of the surgery, talking them through the whole procedure.

We didn't really have a lot of time to worry about the new hospital setting, A was having a cochlear implant that was all that mattered! Plus I respected and trusted his surgeon, so I knew he wouldn't let the change of hospital have any impact on A.

Well we felt like royalty when we arrived, the first paediatric cochear implant patient at the hospital. None less than the Director of Nursing herself met us as we entered the hospital entrance, with a bright colourful helium balloon in hand. She personally escorted us to A's room and introduced us to members of the staff. It was all very sweet, very welcoming and certainly put us at ease.

Before long A was ready to go and was called into surgery.....that wonderful surgeon, yes he let us walk all the way down carrying A and holding him until the anaesthetist had put him under. Next came the longest four and a half hours of our lives. "Go for a walk, grab a coffee, some lunch or something"...oh yeah right, while our baby is in there with you???? We made ourselves go out and walk into the city centre....not that either of us ate anything, that rolled up tight ball in our stomachs went half way up our throats, there was no food going down there - a coffee at a squeeze and that was it! We did however buy out almost all the Thomas the Tank Engine merchandise in the city shops because they were As favourites and nothing was too much for him then!

Back at the hospital the surgeon emerged, wearing a big smile that put us instantly at ease.."everything is fine, he is fine, the surgery went really well, he will be up in a short while....."

Well in came this dear little man with his head wrapped up in a bandage like a wee turban. There is something about children in hospital when they are wheeled back to their rooms on a full size gurney. They look so small, so vulnerable, so helpless. For the rest of that day he slept on and off, waking with a bit of a grizzle and a moan, and then after some liquid panadol for the pain, back to sleep he went.

We had decided prior to that I would go home and collect B from whoever's place he was that day (B's story is a whole nother blog!) while hubby would stay with A. So at the end of a long day, I kissed my sleeping angel good bye and gave hubby a kiss and a hug and headed home. We were both so exhausted, not so much because of anything we had done but because of the stress of worrying, of wondering, of waiting.....

I don't know why it is, but when you have important things to do like go see your little guy in hospital again the next day, suddenly all these unforseen things appear that just have to be done....like where were they last week or the week before? Why do I have to do them today, can't they wait a week? Ah no, it appeared not! So B and I ran around doing all these stupid errands before making it back to the hospital around mid-morning.

Now remember I had left young grumpy bum dozing on and off and not really being that happy with the world at large the night before. I approached his hospital ward with trepidation....

Before he went into hospital we had made sure we had some button up shirts so they wouldn't need to go over his head - it was summer, it was boys wear, they were loud and colourful (quite appropriate in the future it would seem!).

So I am approaching the ward, trying not to sprint the last 100 metres down the ward to collect that angel into my arms and smother him with kisses. Well I look up to see this multi-coloured 2 foot nothing tornado barrelling down the hallway at a million miles an hour throwing bodies behind him (well ok not throwing bodies but the rest was true)! He tore down the corridor towards me, his face a beaming smile, eager to see me and of course to see his little brother. The change in him from the night before took my breath away!

Oh it is so true what they say, we parents suffer the anxiety, the sleep deprivation, the worry and for what? So we may look like death warmed up to those that see us, while the cause of our worries, our dear sweet child, no he is as fresh as a daisy and raring to go. Not that I minded of course, it was wonderful to see him so happy and so unaffected by his surgery.

Mind you his hospital stay was not without its moments, more on that in the next blog....so you will have to keep checking into find out more....