The numbers are in

OK so boy wonder has been working hard - note BEEN - he is now on holidays while we all have a week to go!!

He finished his last exam on Wednesday and today they were collected.

Italian 18/20 - now that just blows my socks off I tell you!
English 6 (max is a 7)
PE 38/40
Science 86% (with a note from his class teacher that was the top mark for the class!)
Maths 62%

He knew he hadn't done well in maths and it was a hard paper by all accounts but overall he is really happy with how he has done! I am pretty damn impressed myself *smile*

I called him today from work to let him know and he was quite chatty and we talked about the big picture stuff - got to say, still really love that he can chat on the phone with me like that.

End of the day the hormone tornado blew in to my office with a full on ready to rant about stupid rules, b***h management staff - oh yeah on a roll and then some - he could of got a gig on Kath's recent blog post I reckon : - ) Well as the story unfolded he was indeed in the wrong - try telling that to a hormonal 15 year old - and we talked about why the rules are in place and you don't have to agree with them buddy, ya just have to live within them.

My final words as we were almost home - I point to my head and say "look" and he is like "what you don't have any grey hair" to which I replied "yeah and lets just to keep it that way!!!"

He has chilled now, got home, hanging with his big bro and all that has been forgotten for now....you see, fate/destiny/higher order powers what ever you believe in really has just a sick sense of humour! They give you one to lull you into a false sense of security that maybe you have a handle on this parenting game - then whammo hit you with the bleeding obvious of the fact you should realise, like everyone else you have no clue!!

He is a good kid at heart and I know we will get through this and all I can do as mum is to be there, keep communicating and trying to guide him in the right direction -as he so elolquently put it today "Hey I have only had a couple of catch up classes and one Friday afternoon detention in 4 years at this school!" Yes indeed he has and that puts him well on top of the behaviour pool of some in his year level!

Roll on Christmas holidays - not long now and then I get the added bonus of having Rachel here with me for a few days!

A crazy life

Oh boy life sure is crazy sometimes isn't it?

All those plans and preconceived ideas on how things are going to be? Huh or so ya thought!

When A lost his hearing and life went topsy turvy for awhile, his younger brother was a godsend. He was my very own little language model and of course if I needed to infuse some extra effort, I will admit to playing on the sibling rivalry every now and then to up the ante. That and M & Ms anyways.

Those early years B was the easy one, A was the one that had additional needs, school requirements, AVT, audiology appointments.

Soooo fast forward now to A being 16 and B being 15 - and well lets just say it is not my deaf child that is going to give me grey hairs!!!

A is on his way, confident, determined, organised, putting all his efforts into ensuring his academic success - with the social life mixed in there of course - I need a pre-recorded message "get of msn chat, you have been on long enough!". That said tonight he tells he has some Italian to practice, a group role play they have to do and starts talking Italian at me. Then he goes on to say they think they will play it like they are in a cafe and slouch in their chairs and perhaps do it "Fonzie style" as in Fonzie from Happy Days! They plan to undo a top button, turn up the collars and put lots of thumbs up signs and eehhhhhsss in between their Italian lines - what a crack up! You can just see it now, a bunch of Aussie kids, one fair haired to boot, talking it up in Italian whilst acting so cool like The Fonz - trying not to laugh so hard I can type here. Watch out Italia when these guys go on exchange next year!



And my dearest, sweetest little angel B - well he is the one that keeps me up at night with mummy worry and the real risk of grey hair. He is the exact opposite, trying to find his place in the world, loving the social aspects of school but not much else "school is gay, teachers are gay, what a total waste of my time the last 10 years have been, I could have so much better used my time" UGH!!! How do you get through that testerone infused aura to try to instill the big picture??? If you know, message me now!!! He reminds me a lot of my brother who has gone to be very successful and lead a very happy and fulfilling life. So I don't worry that B will get there, I just worry about these in between years.

Organisation - are you freakin kidding me? Yesterday we were trying to journal what we did 10 weeks ago because we haven't done it in real time. Had no homework for so many nights, then surprise surprise "oh mum I hate school I have like 8 assignments to do this week" Further examination reveals some of them he has for several weeks but has just chosen not to do them "because they were not due then" At which point I look to the nearest wall on which to bash my head because frustration overwhelms me. Do I ignore him say hard luck kid you are on your own?? Of course I don't he is my angel, I am his mum, that is what we do! BUT he hasn't escaped the lecture about getting organised and not giving his mother grey hair before her time!!!

Next week he is off on school camp for 2 weeks. A did it last year, it is 2 weeks to look at self sufficiency, self reliance and lots of mountain bike riding, rock climbing and abseiling. Here's hoping 2 weeks away brings a new perspective, a better sense of self and a much more confident little guy that doesn't have to try so hard to fit in. A guy that is starting to find his own place in the world and be proud of his place in it. Fingers crossed anyways!

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.

Welcome to Holland

WELCOME TO HOLLAND
byEmily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

This is one of the most beautiful poems I have ever read and really does tell the story of parenting a child with special needs.

You see the thing about parents of special needs kids is none of us actually chose to be. Not one of us stood there in the line when children were being handed out, and said, "oh no thank you, it is a special needs child for me thanks"

Heck I even managed to land my flight in Italy, with all the other folk checking out the Coliseum. Life was all going according to plan two healthy boys, ok so having them 15 months apart wasn't quite part of the plan. BUT apart from that life was pretty damn normal....well as normal as it gets when you put your body through two pregnancies so close together.

That was the way it was right up til B's first birthday. He celebrated his first birthday at the beginning of October. By the end of that month we were on a whole different flight - we didn't know it yet, but we were being transported from Italy to Holland with such speed we could have beaten Spock on the Enterprise with the teleport beam!

At the end of that month, A fell ill, he was 27 months old. At first it was like any other childhood illness, the clingy syndrome where we mothers feel that we actually have grown another lump on our bodies because our child is so permanently attached there. Well it wasn't a regular childhood illness, no it was in fact meningitis. Those taking the time to read this, are your kids up to date with all their shots, including those that protect them from meningitis? There is now a vaccine to protect against the bastard bug that sent us down this road, but at the time when A got it, there was not.

In the blink of an eye we were in hospital, this tiny toddler unconscious and very, very sick. He was diagnosed with bacterial meningitis, in his case caused by streptococcus penumoniae. This apparently innocuous bug that causes sore throats, ear infections and sometimes pneumonia. If you are really unlucky, over the final safe guard of defence, the blood/brain barrier it wanders. And voila, you get told your child has bacterial meningitis!

Excuse me, he was what??? Oh but wait these amazing medicos with the bedside manner of a cold bed pan have more news for us. "IF he survives the next 48 hours, he should make it."

"What the f'k did you just say?" my mind was screaming at them, "IF he survives? what the hell does that mean?"

I guess it was kind of lucky we didn't have too much time on our hands to contemplate that one. Instead we were working on the logistics of how this would work, one toddler hospitalised, one only just turned one year old who also needed love, care and attention. And these honchos at MI5, and Special Operations think they have logistics and planning down to a fine art, kiss my a**, they have it easy compared to the military precision of our special op!

We had relatives caring for B during the day, others making meals for the parent on "home duty" to take home so they and B at least got a decent feed. The other parent took to the overnight "sleep" (actually more like fitful snatches of shut eye in a dodgy fold up bed whilst over hearing who was doing who care of the night duty staff). For fourteen days we maintained our bedside vigil.

Oh he woke up but that was about it, there was no balance left at all. In the hospital play room we had to sit behind him lest he lose his balance and topple over on the floor. Not that I was really all that keen for him to even be in the playroom, my mind reeled at the possible cocktail of germs and bugs that no doubt lay in waiting for him on those well used, aka well slobbered on, toys!

There is nothing so soul destroying as looking into the pleading, questioning eyes of your toddler as you stand there and allow a nurse to stick a horse size needle fair into the muscle of his thigh to inject more antibiotics. You can't look away but you see it in his little face, his eyes screaming at you "why are you letting them do this to me? Aren't you the ones that are supposed to protect me?".

So with the balance loss comes this listing to one side. "Is this a normal side effect of meningitis or something we need to look further into?' muses his paediatrician...."ah hello you'd be the guy in a white coat with the initials Dr in front of your name, "what the hell do you think?". Although I have to say his paediatrician was in fact a complete blessing, without Dr M, I don't know if we would have survived this ordeal! I can remember the hospital's resident paediatrician, expressing his concern that A wasn't out of bed and walking around the room. Of course in these situations mothers must do what it is inherent in them to do...totally flip out and freak over all the possible reasons why this hasn't happened. Bless Dr M when he came in and I was climbing the wall convinced I was taking home a seriously damaged beyond repair child......on hearing the words of the resident paediatrician, he said something like "the kid has been unconcious for two days, how the f'k is he going to be walking around his room, f'n text book doctors"....ah you can see why Dr M and I got on just fine....I liked a man who said exactly what was on his mine...and his colourful language, well that just helped disguise mine!

Oh back to the listing left....no we were not happy with that, Dr M, that is. So it was off for a general anaesthetic and an MRI, as if this poor little bugger hadn't been through enough. Well the results showed nothing abnormal, just patterns of what was assumed to be scarring on the brain due to meningitis....what the???? Scarring...what does that mean? Oh probably nothing.....

With those words ringing in our ears and of course an appointment for a hearing test in 4 weeks time, we were ready to leave hospital....oh did I mention the hearing test? Oh yes, lucky you, jackpot week for you! The bug your son has is the one that has the highest incidence of hearing loss as a result of the meningitis, hence your booking for a hearing test....oh just stab me in the heart, we have gone through 14 days of hell, we are taking home this broken little boy, who can't even sit up on his own without our being there to support him and protect him from toppling over...and now you tell me he may lose his hearing too????

Off we went home from hospital with our broken little boy.....completely unaware that at this point, we were already in our seats on our way to Holland...maybe it was just as well, we needed time to regroup at home, in Italy with all our friends and family, before we would be strong enough to realise we had landed in Holland.