Wednesday, October 29, 2008

The busy people

So how is it that some of us don't know when to say "no thank you, I think I have enough on my plate at the moment, but thanks for asking"

Why is that we are so busy with all this stuff going on and then when someone asks for some help with something, we are the first to volunteer?

I tell you what sometimes my husband thinks I am nuts. He just looks at me and shakes his head, knowing trying to talk me out things is a futile effort, with his energy better invested elsewhere.

I suspect that maybe my father is to blame (hey kids can blame their parents for everything these days, right?) Seriously though my father was big on the whole "if you start something you can't let other people down by bailing out" started with the school sports teams and went on from there really - if you made a commitment, by heck you had to stick to it.

So here I am as wife and mother to two gorgeous teens (said with total objectivity), working full time, training and teaching karate, and then I still manage to add yet more projects to my life - I think my husband is right, maybe I am nuts.

BUT when it comes to families with children with a hearing loss, how do you say no? I know I can't. I hear that mum with fear, and heart break in her voice, when she is wondering about her child's future, how can I not spend 30-60 mins on the phone with her? When I hear about a government department or fat cat in his ivory tower making some fundamentally stupid decision that will seriously impact on the outcomes of deaf/hearing impaired kids in my state, how can I say, "no thanks, plates a bit full at the moment"? What about that child, what about their right to reach their full potential? Somehow, "I'm a bit busy at the moment" doesn't really cut it, does it?

Fortunately with the power of the internet we are making some bigger groups, educating parents on mass and in turn empowering each of them to work for their own child and perhaps even the children of others in their own communities. The sad reality is that not all parents have it in them to advocate for their children, they need people like us to be there to help them and in turn help their kids...reminds me of the lyrics of one of my favourite songs "Hands" by Jewel.

"We'll fight, not out of spite,
for someone must stand up
for what's right
because where there's a man that has no voice
there ours will go singing....."

Wednesday, October 22, 2008

True blessings abound

Well you know the professionals amongst us choose to work with deaf and hearing impaired kids.

We as the parents of those kids, didn't choose it, it chose us.

Honestly, I'm not any of us were that thrilled with the choices life threw at us in those early days in which we found out things were going to be just a little bit different in our households.

That's the most incredible thing about parenting, when you think you can't cope or you think you can't do it - you look at that dear sweet child who needs you, who depends on you - and whammo suddenly you find a strength you never knew you had. With the strength comes the drive, the passion to do whatever it takes for your child.

A smaller subset of those parents, are beset with the "passing the baton gene". This gene isn't really a gene per se but something that might as well be. That's because it is right at the heart of them, right deep down inside, almost like part of their genetic makeup. These are the parents that see the bigger picture, these are the parents that want to make a difference! BUT not just to their own kids, for all the kids around them and those kids who are yet to come.

These same parents are the ones that are really tired and feel like falling in a heap until someone else who is not so far on the journey, calls or emails and needs some help or support. Forgeting their own state of tiredness, they collectively respond to gently lift that struggling parent back up on to their feet.

These are the same people who see something important, recognise it and put their heads down and their butts up and just go for it.

Jodi, Val and Lydia are 3 such people - they have in 6 days put together the most amazing website.

This website is going to be just the most amazing reference point for parents and professionals alike. It also has a link to CI Circle blog where parents of newly diagnosed kids can come and meet some others who have been there before and know the support they so desire is but an email away - now in this internet age, that is truly a precious, precious thing.

Alongside these 3 go getters are a cast of over 1700 members of the CI Circle discussion list.

It is all about you guys. The list serve was set up for you all and boy have you taken it and turned it into more than Karen & I ever dared to imagine over 10 years ago now.

The group is so unique and special - perhaps a more caring environment than some of our members have in their immediate surroundings. A welcoming place where people "JUST GET IT!"

It truly is a case of no matter what life dishes out, there most definitely are so many blessings around us, and I am so incredibly blessed to have you all in my life.

Saturday, October 18, 2008

The Gift of Speech and Hearing

Last night saw us celebrate the 21st birthday of our very beautiful niece. Off we dutifully trotted to the Alma for a family dinner. My two boys as normal teenagers were less than enthused at the thought of a family affair but after the "not negotiable" spiel from their mother they grudgingly gave in. Of course when they got there, they had a good time!

Since hubby is one of 6 kids, a family dinner is never small - in fact there were 35 people at this dinner. It was one of those frightening things you do when you see those members of the family, relations from the other side, that you haven't seen for years and suddenly their kids are all young adults, with girlfriends and boyfriends in tow no less - man it makes you feel old and more importantly - what the hell happened to all those years????

In amongst all of those 35 people guess how many can use sign language? Yep NONE!

As we sat at dinner enjoying ourselves, I couldn't help but contemplate how different things might have been if we did not have the wonderful opportunity of getting a cochlear implant for A when he lost his hearing to meningitis. He had no useable hearing, he would have been signing. We would have been able to sign, but many of those there wouldn't have - how cut off and isolated would A have been in what should have been a fun time? A time of family, fun and celebration.

I watched on as different relatives and family members moved around the 2 tables sitting down and catching up with people they hadn't seen in awhile. Of course they came to sit with us and engage us in conversation and A could join in, and talk and be part of the conversation and discussion.

Then the waitress came over to take all the orders, and walked up to A and asked him what he wanted to order for dinner. Again, a very easy and natural exchange - yes I know he could have just pointed at the menu if he couldn't speak, but the ease with which he was able to communicate was what struck me.

Regardless of what happens in the future for him, who knows he may or may not choose to learn sign language, but irrespective of that, our giving him a cochlear implant and working with him to develop speech and listening skills, have certainly set him up for a life in which communication with the wider bulk of his community (which is hearing) will be possible.

I'm not sure there is a greater gift that we could give him.

Thursday, October 9, 2008

Cruising on down memory lane!

Oh girls, you book pushers you - you know who you all are!! THANK YOU, THANK YOU, THANK YOU!

I am in my study surrounded by sh*t everywhere and it is all your fault. I started looking to see what bits and pieces I have that I can lay my hand on.

I just found the very original post when Pam Talbot started AV Circle which was our group to swap therapy ideas for just those parents who were using AV therapy with their kiddos - that was in April 1997!!! Then of course I have to read a whole heap of the emails I printed from back then - printed with the perforated edges mind you, you know where the paper moves through those little feeder things and comes off in one long sheet and you tear along the individual page break perforations! Some of those people there I still have contact with today - now that is just too awesome.

From there to another folder called Adam's stuff - in there - a veritable goldmine. I found journals that he and I did together when he was 5 and we journalled each day together and put stuck in pictures from the day or if we were really scraping the bottom of the barrel he got one of my lame drawings in there. I found pages with feathers stuck in there, tram tickets, all kinds of stuff - very, very cool.

And there was a newspaper clipping of A with another boy when the government was going to cut back on the preschool program he was in the headline screams

"Angry parents blast decision"

and then goes on to quote the president of the management of the preschool committee - ah yep that'd be me - somethings never change : - )

I even found a document from our gorgeously, wonderful, amazing CI surgeon which has information about the implant and then on the back the list of possible risk and the occurrence of each risk in 200 operations already performed - and that would have been handed to me back in December 2004 - this surgeon was sooo before his time in empowering and informing parents.

Hey never mind the book right now I gotta go, more mining of the goldfields to do......

Wednesday, October 8, 2008

The aligning of the signs.....

Well all these published writer friends of mine have been recently encouraging me to pull my finger out and stop talking about writing this book and just start doing it!!

It isn't that I don't want to, I'm still kind of getting my head around exactly what I want to write, areas I want to focus on, stories to share - you know, you get the picture right? Had some great input on that front from Val - thanks girl!

I attended a brilliant seminar in September from a person who is a trained teacher of the deaf and now a university researcher in resilience in deaf/hearing impaired kids, the involvement of kids in policy making and that kind of thing. It was a really good seminar. So much so I emailed her to ask her if I could do a summary for our parent newsletter for our state parent organisation, with her having final proof of it of course. She has very generously agreed which is great because there was so much good stuff in her seminar that will be just fantastic for parents to have access to. At her seminar she was very interested in hearing about shared experiences, everyone there apart from me was a teacher of the deaf, I was the sole parent in the room - go figure of course I would be : - ) In my email requesting permission to write the newsletter article I put some of mine/A's experiences into the email and mentioned the fact that I have this book running about in my head, that has been there for a few years and that seems to be coming to the fore in recent times. So get this, back comes an email "ABSOLUTELY encouraging" me to write the book and the benefit that is to be gained from the "lived experiences of others". And THEN asks me to let her know if I think she can help me in any way!!!!

OK so now I'm thinking "hmmm maybe the time is right to get serious about this now, maybe the stars are lining up and now is the time"....

So you can only imagine my reaction today after something that happened. It is school holidays, time to get the big bin delivered and purge the house, shed, wardrobes of useless stuff that we have accumulated since the last purge! Hubby is cleaning out the basement/study where there is heaps of stuff stored including books & things of sentimental value from when the kids were younger. He walks back up into the house and hands me this little notebook that says on the front "Communication Book". When A was in primary school I had a communication book with his teachers to put issues/problems in, any new vocab I might need to teach him etc. And then out of the blue hubby finds the one that he had in year 3 at school (I already had the one from his first year of school in my study).

Coincidence?Or am I just so bad at seeing the signs that the next thing that happens is a dirty great volume of work, will fall from a shelf and smack me fair in the head????

Hmmm perhaps the signs are indeed aligning....and that is a scary thought, because then Iwill actually have to do this thing!

Monday, October 6, 2008

Happy Birthday to my "baby"

Exciting week, my youngest baby, turned 15 this weekend - where the heck have all those years gone eh??? And how can I possibly be mature and responsible and old enough to be the parent of a baby who is now 15???? What is with that???

My two darlings are like chalk and cheese in so many ways. Yet in ways that complement each other and ways that bring them really close together in these teen years, hanging with each other and really enjoying each others company.

I guess like most parents dealing with the disability card in the pack, there is a lot of guilt in there for the "child without the disability". All that time consumed in appointments, AVT etc - sure it was no picnic for A but his younger brother didn't really get that, just got the fact that he got to get time out of school and with mum while his younger brother did not! I'm not sure that ever goes away, that feeling of guilt, even though the rational brain tells you that you made special times for him and that he really didn't miss out - the thought that he might have still lingers.

So double whammy on the spoiling front really??? Baby of the family and mum's guilt trip win-win for him really.

He is the musician of our family, been playing guitar for 4 years now and so wanted a new guitar for his birthday. Since he is so passionate about it, we were very happy to buy him one - damn the kid has taste, check out this little beauty!!!

He has been playing it every day since, it has a great sound, even when he cranks up the distortion on the amp to hit me with Metallica, Black Sabbath or other such ilk!!! Still at least I know where he is and what he is doing, puts me way in front of some other poor mothers.

So of course was the shopping for the birthday card, funny and crude (yep sadly often mum's usual fare!!) or soppy and sentimental for my benefit, "Oh god you are so embarassing" for him.

Then I happened on a really beautiful card, thanks Hallmark! The words were just so right for where he is right now, so caught in the teen angst of fitting in and having no idea what he wants to do with the rest of his life - hello he is only 15 after all.

I so loved the words, I thought I would share them here...

Someday, Son,

you will become a "sir" -

the world will expect you

to wear ties and pay taxes

and take care of your lawn.

People will try to sell you insurance

and major appliances.

You may feel the urge

to carry an umbrella "just in case"

and go to bed early on Saturdays.

You'll hear your favourite songs

in a lift.

So take it from someone who knows,

someone who loves you-

there'll never be another time

in your life like this.

Be happy.

Laugh until it hurts.



Do good stuff.

Ask questions.

Stop for pizza.

Order extra-large.....

Hang out with friends.

Find something that matters

and be a part of it.

The world is full of "sirs"

But there is only one you

only one now.


Wednesday, October 1, 2008

Power mums

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

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

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