Saturday, May 31, 2008

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 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.

Friday, May 30, 2008

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".

Saturday, May 24, 2008

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.

Saturday, May 17, 2008

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.