Lessons learned from A

Tagged not once but twice

2009-04-24T22:31:00.000-07:00

Ok so I have been Mummy Meme tagged twice now so I guess I had better get my act together and do it - I should be preparing my presentation for a conference but well here goes....

Sooo 5 things I love about being a mummy......

1. I loved being pregnant - yeah I know Kath and a few others are now shouting "b***h" at their computer screens. I was one of the lucky ones, a couple of weeks of nausea, no vomiting or any of that stuff...and that was it...so pregnancy was a real joy for me, I loved feeling my babies moving around and growing inside of me and both of my boys had hiccups in utero that would cause to pause momentarily feeling like I had accidentally sat on a washing machine at full spin and not noticed, only to release the vibrations were coming from the inside!!

2. Of course it wasn't part of the plan that I would have 2 babies with only 15 months separating them!! However it was perfect - sure it was tough early on but then they were old enough to be instant buddies and into the same thing. I got to be the mum on the sideline when both the boys were playing on the same soccer team and yes you would be shocked to know - I am a noisy soccer mum!! I can't help it, I get so excited, that I can't help but cheer. Being a mum, I love that I get to watch my boys become part of a team, learn new skills and see that look of pride when they master a new skill or kick that most unlikely goal.

3. Unlike some I was fortunate to be in the position where I didn't work much when my babies were young. I was lucky enough to pick up about 15 hours a week in which time hubby was home with the boys. It was sanity escape time and time spent with adults - woohoo; and great bonding time for Dad and his boys. So since I wasn't working I got to do all those mummy things like walking to the playground and just letting them play, kindergym, playgroup, play dates at the houses of the mum's I met in those pre-birth classes. I had so much time with them to just "be", to see them and watch them grow and develop and those memories will truly last a life time.

4. One of my most favourite parts of being a mum is never having to grow up! As I tell the boys, I might have to grow old but I don't have to grow up! I often get told by sons that "you know you are sooo immature". Granted I often earn that title by throwing cold water over the top of the shower at them, or lobbing a soft toy on to their beds while they are in it and then bolting down stairs again before they can get me back!! I love that playing pranks on them and getting pranked by them keeps such a sense of fun and laughter in my life.

5.The love the priviledge of spending time with these gorgeous young men that are now on the verge of adulthood! I so enjoy who they are becoming and look on a little in sheer wonder at the fact that I gave birth to two guys who are so amazing and that they turned out the way they did inspite of my parenting. I love the lessons they have taught me. I love that through them I recognise that different people have different talents and success for each person is different. I love that they have taught me not to compare, not to lament what is not or what might be, but to live for now and love for now, and make sure you tell each other you love each other, every day!!!

The trip of a lifetime

2009-03-20T23:57:00.000-07:00

Well I have been a little slack about keeping the blog updated - been a bit busy of late - conference in my home town - more on that later - and of course getting everything organised for my trip of a lifetime!!!

Next Wednesday I am off, leaving on a jet plane to head to California to attend the Cochlear Americas Celebration. But perhaps most exciting of all, I am getting to meet Dee.

It is a long and complicated story, often times people think we are all just a little strange when we tell it. In fact someone asked just recently who Dee was on my facebook page and she replied it was kind of complicated we were part of a gang but a really nice friendly gang hahahaha

Back in 1998 Karen B & I started CI Circle. We started it so that parents could get information about cochlear implants for their children but without being judged by others for considering this option. When it started we had 8 people, now we have over 1700 members!

When CI Circle got too big we missed the "chats" the original 8 had so we set up a group on our respective computer email programs and nicknamed ourselves "the gang". Over the last 11 years we have been corresponding with each other sharing stories, good days, bad days and everything in between.

In fact in April of 1998 we put together a little book with a page about our families and photos and one child of the families designed a cover for us and everything, then we had it printed and bound, so we could all "meet" from our different parts of the world.

In August of 2002, Mike, Dee's son was in Australia for a study tour, so we flew him to SA and he attended a Parents of the Hearing Impaired of SA (PHISA) camp with us. It was brilliant meeting Mike and having him come on camp with us and then stay a few days with us. A was pretty stoked to have Mike in the house so there were two people with implants staying at our place.

Up until now Mike's mum, Dee, and I have never met. Then early this year this amazing lady made me the most generous offer. She was using her frequent flyer points to fly me to the conference so that I could stay with her and then do some sightseeing with her in her hometown as well! I am still pinching myself at the generosity she has shown me and I am just about busting with excitement that we are going to meet in a matter of days now!

Then I get an invitation for a garden tea party, and read on to find out I am the guest of honour, yep I am serious! Her workmates are experts at planning these things so they have taken it on so Dee and I can just sit and enjoy ourselves in her garden and she can introduce me to the family and friends that are special to her. I have never been the guest of honour at a garden tea party before - it is quite overwhelming.

So on Wednesday I hit the skies for my flight to the otherside of the world (14 & 1/2 hours for one of the flights!!) I haven't left yet and already it is the trip of a lifetime. I can't wait to see what awaits when I get there. To meet Dee and her family/friends, to meet some of the CI Circle families whose emails I read quite regularly on the circle, to see Rachel again - it seems so long ago since she was here with us in December last year. It is going to be a jam packed week over there and I am so excited I am like the child waiting for Christmas....

The sublime moments

2009-03-05T01:27:00.000-08:00

Just a quick note of one of those sublime moments that caught me today.

A was complaining of a sore back so I made him an appointment with the physiotherapist. It is one of those clinics that unless you have ongoing care issues, or a burning desire to see the same person every time, you can just get an appointment with whoever. Since A wanted an appointment today we took the latter option.

So there he is, all 6'4" of him stretched out on the bed, with his face shoved down inside one of those donut type pillows they use. The physiotherapist was a lovely young Indian girl who still had an accent in her speech. She started asking A questions about where it hurt and what it felt like when she did this or that. I sat there having a moment to really ponder just how far we have come. There is A face down, answering all these questions, with her accented speech. No other cues for him but auditory listening to her speaking. What a wonderful gift the cochlear implant has been for him, and how different might his life been if this technology was not available to him?

Fine Cusine reigns supreme

2009-03-04T23:16:00.000-08:00

Well hot on the heels of the beautiful cream puffs came tea cake with an apple & cinnamon topping - oh and get this, Master B baked it last 2 lessons on Friday, so we headed home with warm tea cake to have with our after school drinks! Ah yeah, doesn't get much better than that.

This week I believe it is cup cakes and some fun decorating them. I'm not sure who is more suprised us or Master B at his cullinary efforts. He has become quite the chef and what is so exciting is seeing his self-confidence soar and having that sense of satisfaction of a job well done when he looks at the products he has baked each week - truly awesome.

Interestingly Mr "I hate art" found a book we got him years ago about how to draw Manga figures. He found it on the weekend and decided to have a go - granted he should have been doing his science practical write up, but hey at least he found a creative way to avoid doing it.

And not a bad first attempt either I might add!!

Check out these masterpieces

2009-02-27T05:19:00.000-08:00

Yeah ok I know the blog title is lessons learned from A - but well sometimes it gets a bit too much about A, case in point, my previous post!!

So today's post is all about the gorgeous Master B. I have mentioned before he is at that age where he really has no clue as to what he wants to do in terms of future study or career options. So he has tried to choose as many different elective subjects this year to expose him to different options.

One subject this semester is Food Studies - well I have come to love Fridays because that is when the food comes home.

Week 1 we are greeted with still warm date scones, fresh from the oven.
Week 2 they made the pastry early in the week and froze it, and come Friday hey presto 4 yummy pasties with the best pastry on them.
Week 3 more pastry early in the week, then a beautiful apple and cinnamon pie with puff pastry actually made by hand, not out of the packet in the freezer.

But this week, week 4 - the little beauties in the photo - cream puffs. B and his class mates made their puffs early in the week and froze them and then today he filled them slices of strawberry and fresh whipped cream and then finished them off by drizzling melted chocolate all over them.

The cream puffs were magnificent, they were dessert tonight! He was so proud of them, as he should be, he did an outstanding job. In fact all of the things he has brought home and have all been great quality, and he seems to be enjoying this subject too - who knows perhaps a career in hospitality beckons???? Either way, it won't go to waste, great way to impress the girls by whipping them up a few divine cream puffs : - )

Well done, mate - you are a legend and your cream puffs are simply masterpieces!!!

Interesting times

2009-02-19T23:11:00.000-08:00

Well its been awhile since I blogged - life gets crazy and then it is "well should I really blog that or not?" - always a tough call

The boys have been back at school 3 weeks and it has been "interesting times".

A is doing the International Baccelaureate program which means he is getting plenty of work to do and because he is such a damn perfectionist makes life harder for himself particulary with his inescapable talent of not being able to see the wood for the trees! So it usually is at certain moments that mum or dad need to intervene to circumvent the impending melt down. Just the equivalent of a "stop - take a breath, what are you trying to do?" and then he works with whichever one of us it happens to be to get some logic and rational thought happening and then he is on his way.

For the first time ever A & B both have the same teacher for English this year, and this teacher has never had either of them before. Well we didn't even make it to the end of week 1 when the teacher asked if she could speak to me a moment. She went on tell me she accidentally called B by A's name and the response she got went something like "oh I'm dumb and stupid, don't even waste your time on me" - oh yeah baby just kick me in the guts and jam that knife in and out of my chest a few times.... I thought my knees might crumple actually but I did hold it together enough to thank her for letting me know....

I guess we kind of know where it has come from but it didn't make it any easier. New year, new classes and B has been split off from many of his friends, (although does have friends in his class) and I might say it is in all their best interests for this to be the case! Plus they are now having more choice of subject and that means different class groups too. So B is still settling into the classroom dynamic of the new year and finding his feet.

Whilst this is going on A has been doing the IB stuff and doing a personal leadership course (hmm yeah promised a blog on that one didn't I? Back on my to do list!) So I guess he was getting a fair degree of the spotlight....UGH...

So hubby and I spent time individually telling him how proud we were of him, recognising his love is music, his brother's academia - and that doesn't make either one of them better than the other, just different. I pulled A aside and shared with him the comment and how B must be feeling and told him that B was going to get showered in praise and attention for awhile. It didn't mean we loved A any less or that we were not interested or proud of what he was doing/achieving we just needed B to feel like he was in the spotlight for awhile.

Here is the real kicker though - you think you have done this deafness/special needs kid thing and are coming through ok and something like this happens and knocks you for six! Have I neglected the one with normal hearing, is that why he doesn't feel like he is valued, or that A is somehow more worthy than him?

My logical brain knows how much we have done for him to have special time away from A with either hubby or myself. My logical brain also knows that we share our love and praise and pride with both boys equally.

Equally my brain knows my brother growing up always believed that I, the younger and also more academic of the two of us, was more loved than he was! Funny thing is Dad shared with me when I was older as proud as he was of my achievements, he was kind of more proud of my brother because he had to work harder to do well at school - go figure! I also know other families where kids are jealous of each other, think one child is more loved than they are and these are families without deaf kids! It is just part of family life, sibling dynamics and all that stuff.

It still freaks me out though how my first reaction is that of parental guilt! That somehow we haven't made things equal or made B feel special or that A's deafness has overwhelmed things to B's detriment. Why is that? Why do we feel like it must be our fault or that we should have done something differently or that we have simply buggered things up again? I wish I knew, then maybe I might have shaken that pit of my stomach feeling of despair that haunted me for days after this happened.

I guess at the end of the day we can only do what we can do. B has started taking two lots of guitar lessons, that is his passion. He is there right now and will be coming home soon. He is also doing food studies at school and is actually a pretty darn good cook. Right now the apple pie he made at school is finishing off its last minute baking in the oven so we can have it after dinner tonight when he gets home. I would have praised him for his efforts anyways but by the smell of apple and cinnamon permeating my house, I don't think I will be the only one. If only we could capture those special little moments and replay them to our loved little ones when they get down on themselves and need some reassurance about just how talented they are.

But alas instead we just have stumble along this parenting trip trying our best to try to get it right most of the time - and not to take so much of it personally
: - ) Maternal guilt, comes with the uterus doesn't it???

Wise Old Sage

2009-01-20T15:55:00.000-08:00

Yeah that title got your attention didn't it??

Funny thing is those words came from A, not me! This week we went to have coffee with a teacher A had several years ago at his old school. We try to catch up with this guy several times a year for a coffee and catch up on life. That year was one of profound impacts on both parties. He made a profound impact on A by making A responsible for dealing with social issues like friendships, recognising that friendships take work and that he had to meet people half way. A, too made a profound impact on this teacher, and he still talks regularly about him to people he meets.

After spending a couple of hours together with him, A and I were travelling home and talking in the car. We talked about how his teacher joked and teased him about an upcoming peer mentoring program he is doing (that is another blog coming). At one point during coffee, his teacher said something along the lines of "hmm you thought you would get away with the social stuff with me didn't you, that I would just fix it, but you were wrong" to which A responded "yep that was a turning poing"

hellllooooo my 16 year old comes out with "yep that was a turning point" - how the heck did I raise a child that is so self-aware that he can see a "turning point" in his life when he is now 16 and he was about 12 at the time of the "turning point"!!! That alone messes with my head.

Then on the way home he talked about that some more and then went on to talk about leadership and mentoring. He told me that he seems to have "become the "go-to guy, the wise old sage kind of" with his school friends and peers. It seems his friends or their girlfriends seek his counsel at times of difficulty or relationship issues. I suggested perhaps it is because he is very logical and rational in his thought processes so they know he will give them good advice.

I have said since he was very young that he is what I call "an old soul, someone who has been here before" - he has always had a maturity beyond his years and a way of looking at the world that is quite unique and beyond his level of life experience - WISE OLD SAGE indeed : - )

Good friends

2009-01-11T16:20:00.000-08:00

Yesterday was an awesome today, I caught up with a friend I have seen in like 9 or so years!

She and I were at university together, not in the same courses but we knew some of the same people and became friends.

After leaving Uni we caught up a few times and I don't know life tended to get in the way. We both had kids, her marriage broke up and well she was flat out dealing with life as a working single mother. Each year we dutifully sent each other Christmas cards with a letter of what the year had brought for each of us, and each year saying "it has been too long we must catch up".

Well this year we actually did do that! She and her partner, her 2 kids and his 1 child, all came over for lunch. It was great. All the kids got on really well, yep love the Wii : - ) Her partner is a really lovely guy and we all got on really well together. We sat and talked and talked and talked, all afternoon about all kind of stuff - it was really nice.

I guess that is the thing about good friends, you can not see each in other in ages and when you do, it is like you have never been apart, you just pick up where you left off before.

Except this time we have made a tentative date for later in the year to do it again, otherwise before we know it, another 10 years will have gone by!

Beautiful things online

2008-12-30T17:20:00.000-08:00

If you believe everything you see in the media, you would be convinced all that lurks online are paedophiles, perverts, sex addicts and any other nasty you can think of.

Sure they are there but so too are all the most beautiful things as well.

My foray into "online" started way back when A first received his implant and I was online reading all I could on that subject. That foray online lead to the formation 10 years ago of CI Circle, a wonderful internet resource for parents that are seeking information about implants for their child, or contact with others who walk the same path, but perhaps are further along in the journey and able to offer advice based on real life experiences.

In my time online I have "met" so many beautiful people. I use the word "met" because I have met almost none of them face to face in person. I have met some of their children when they have travelled half way around the world and stayed with me, yet I haven't met their parents. Most recently Rachel came to stay with me which was very exciting as her mother and I have been online friends for quite some time now.

When CI Circle first started 10 years ago, there were 9 original members including me. All of the original 9 still communicate with each other today 10 years on. Granted not always as often as we would like but we still stay in touch, update each other on things going in our lives. We have shared in the highs and lows of births of children, illness of family and friends, marriages not surviving and other moments of personal reflection. At Christmas we send cards to each other and if you are really organised like Heidi you even get them to Australia from the USA not only in time for Christmas but with a family photo included. Each year I aspire to be as organised as Heidi but I haven't quite got there yet - my cards went, but not in time to get there by Christmas though : - )

Another person I have come to know in more recent times is Val. Val is it doing it kind of tough at the moment with her sweet boy having his implant removed because of infection and now going through all the processes attached to it. Not that Val would let you know it though, I am not sure I have ever met such a glass half full kind of person, she is truly amazing. As she said herself, you can't sit around feeling sorry for yourself or else you will get left behind while life goes on! There are a few of us CI Circle Ladies as Val calls us who have tried to be there for Val and her son. Not that we are close enough to be able to go over to her house bearing wine and chocolate, but she is in our thoughts and we send her messages at different times, even whilst she was in hospital and her son in surgery we were emailing knowing she could read them on her phone! Yet none of us would be in each others lives unless we had "met" online.

Jodi's blog today talks of someone she "met" online who she finished up exchanging gifts with. This lady had a profound effect on Jodi and many others as she spent many hours offering advice and support to parents via the Listen-Up forum. Such was her positive impact on so many, there is currently an outpouring of grief at her recent passing from inflammatory breast cancer. It is quite a thing when you stop to think about it that we as humans have this capacity to give such warmth and compassion and support via a written forum over the internet that can have such a profound effect on the lives of others that we have never "met" and in most cases probably never will.

It isn't that our friends and family at home don't love us and cherish us and be there for us. It is just that there is something about connecting with someone who has walked the same path, been on the same journey. All our stories have little differences in comparison to each other but none the less, there is this connection we feel. This shared journey connects us all. For each of us on our journey, we have "met" many people online but there is for all of us, a small bunch of people that we connect with at an even higher level. They become our dearest friends, who we share many of our thoughts and feelings with, and they with us. They become almost like our extended family spread all over the world. The funniest thing I find is if I go to speak to a friend or family member here about one of my "online family members" - I laugh at the look on their faces. WHAT THE ???? is clearly spread across their faces.

"You have never met this person in real life though"
"Ah no"
"But you know so much about them and their families"
"Ah yeah"
"But you have never met them, right?"
"Ah no, not in person"

And so it goes on! I guess if you haven't had it happen to you, you just don't get it.

I have been so fortunate to have so many amazing people join my extended family, my online family I haven't met in person : - )

However my New Year 2009 is looking very very exciting when I am going to get to meet in person one of my oldest and dearest online family members. She is one of the original 9 members that CI Circle started with. She and I have similar family dynamics, two sons pretty close in age, oldest being the one with hearing loss, both of our boys having implants. Her son is married now but when we met he was in high school/college days. I jokingly called her the "den mother" as she was the one of us with the oldest child and who had walked the pathway well before us. She and I just clicked right off the bat and enjoyed our conversations with each other online. In the most amazing display of generosity, this den mother has offered her accrued airline points to fly moi to the USA for the Cochlear Celebration conference in March 2009!!! She lives close enough to where the conference is being held that I am going to stay with her and we will commute to the conference each day. I was so astounded at her offer I must have asked her several times "are you sure about this?" - she was and my flight is now booked. I am so unbelievably excited. I am getting to finally meet one of my oldest and dearest online friends. I keep pinching myself to make sure I am not dreaming.

The funny thing is one of the things she shared with the group of 9 was how much she wanted to re-do part of her garden and then we shared the time with her when she finally had it done and had this beautiful part of the garden where she could just go and sit and have a cup of tea and enjoy her surroundings. When I knew for sure I was going, that was the first thing I thought of, that I would be able to sit in her garden with her and share a cup of tea in her special piece of serenity in her part of the world - how awesome will that be???

I'm sure I am preaching to the choir here since you are all onliners reading this, but there sure are some beautiful things to be found online.

So many blessings

2008-12-18T13:26:00.000-08:00

Ok I think this blog post might need to come with a warning "navel gazing may have occurred prior to writing this post" *smile*

Maybe it is the time of the year, I don't know, when there is anticipation in the air and of course the question that always comes up "so what do you want for Christmas?". Hubby asked me this again the other day, and honestly I couldn't come up with anything.

Like I said to him, I'm not much of a material/things kind of girl. I mean gifts are lovely, but then you have to find somewhere to put it. In all seriousness I have so many gifts already in my life, I think my cup runneth over as they say in the classics.

I have a wonderful husband and 2 gorgeous sons. Yep we are not the pretend perfection of the Brady Bunch or anything like that, we have our sh*t to deal with like everyone else, but we work as a family unit, we have a home filled with love and support, a safe haven for all of us.

I have my extended family, especially my brother and my mum - the cool kind of family that if you don't happen to touch base for a bit because life gets in the way, there is no guilt or emotional blackmail, there is just sincere warmth when we do catch up - but again if any of us needs the other for any reason, we are all there in a shot!

There are the friends that have made it in to my life via karate - those that share a passion for this stuff. People who make me laugh with their blog posts, others who send me the most beautiful messages via facebook, messages that take my breath away and at the same time make me feel so incredibly humble. Even parents of the kids we teach at karate, who take the time to tell us how much they value what we do and the care we take of their kids in the dojo.

Then there are the friends met on my journey with A. What a mixed bag they are, from all walks of life, all over the world, and each with their own unique story but with that common bond we share.

There is Mr 21 who just graduated from a Bachelor of Economics, at the same age equivalent as his hearing peers. Incredible achievement from the guy who implanted at age 3 had about about 50 words!!! And he is the most gorgeous young man to boot. Oh his mum and dad are pretty awesome too for that matter.

Rachel and her family - the ones who walked that path before us, and her mom that continues to educate and advocate for those little ones and their parents who are just starting out on the journey.

Val and her family - talk about a woman who looks at a glass half full! She is going through some tough stuff with her family at the moment, but doesn't let that drag her down - oh no, she not only takes it in her stride, she uses it to build those amazing bonds with her children and to use those circumstances as life lessons for them that will only stand them in greater steed as they get older.

There is the incredible mom I have known for over 10 years who has very generously offered to try to get me to the USA next year for the Cochlear Celebration, so I can stay with her and finally meet her. Best of all if I actually get to go there, we can get to share a cup of tea in her garden that she has had re-done in the time that I have known her. I have heard so much about it, I look forward to the possibility of just sharing that cup of tea and quite conversation in the beauty of her garden.

In a nutshell, really what material gift could I possibly need? I am already incredibly blessed by the people who have entered and become part of my life during the years of my own journey here.

A tourist in your own town

2008-12-16T20:30:00.000-08:00

This week it has been our pleasure to host Rachel for a few days. She has been in Oz for a few weeks and heads off to New Zealand after leaving us today.

Having someone visit your own town makes you think of places to go, things to show them, especially when the time line is tight.

So the first evening we walked around our local area and the resident wildlife were gracious enough to oblige themselves so that Rachel could take some nice shots of them.

The next day she was to present a seminar to a group of parents of deaf and hearing impaired children about bilateral cochlear implants.

However not before we squeezed in Glenelg and its surrounds, including the marina. Where else would we partake of lunch??? The Orange Spot Bakery of course - the first time I have ever had a sweet potato and spinach pasty and oh it was sooo good!

Off to the seminar and then home for a rest and a catch up. It is neat hearing about differences between the USA and here!

The next day it was off to Warrawong so Rachel could pat a kangaroo. Followed by the compulsory visit to Melba's chocolate factory and Woodside cheese - mmmmmmm

And with just a little irony, having patted the kangaroo at Warrawong, we chowed down on the same thing that night for dinner at the Red Ochre - very nice meal and nice company as well when some other family friends joined us.

The last full day was spent exploring the city, and looking for an Adelaide snow globe, because Rachel likes to collect them from each city she visits. May I say that Adelaide officially SUCKS when it comes to Adelaide snow globes!!! There is one small round one with nice stuff on the outside but a very small Victoria Square fountain in there - something like this but a little larger might be nice - but no can do. Then there are these larger ones with a photo from Adelaide kind of stuck up one side, very tardy looking - and that was it - nadda nothing!! How embarrassing - but get this!!! At the Central Market they had no Adelaide ones but one souvenir shop had two Sydney ones WTF????? Are you serious?

Fortunately though, the Central Market did turn it on for wonderful atmosphere, fresh food and lovely people. We headed home with some prawns and SA fruit for a yummy dinner.

Today we farewelled Rachel to the land of the sheep and wish her well for the rest of her trip.

What an amazing experience

2008-12-11T21:37:00.000-08:00

B went on the school Quest camp this term. It is 2 weeks away in the Grampians. The whole undertone of the program is "perseverance, selflessness and community spirit" - not something one would usually link to 15 year old - boys in particular.

It is a great program where they really learn a lot about themselves and others.

Activities like abseiling.....

Or the solo night out, where one has to build their own makeshift shelter that they sleep in that night. They can see each other but have to be far enough away so they can't talk to each other - B's comment after he came home "gives you lots of time to think when you are by yourself"

Or the fun of working together as a team to build a raft to get to the other side and even though members of your team tell their "captain" it isn't going to work, he refuses to listen. So onward you and then well you were all right - check out B who was adamant he was going to get his shoes wet!!

Then of course there are the shots you get to see when they get home and you are really really glad you see them after they have arrived home. Afterall in order for them to take these shots, they had to be up this high at some point!!! Yes best their mothers didn't know that this is where they were...

The school uses mentors on these camps that are student teachers who are still studying and have chosen outdoor education as one of their electives. What an unreal prac placement for them too.

As if B didn't already have an awesome time but on his last day of school this week, he (and all the members of his group) received a letter from their mentor about her thoughts and experiences on Quest, her memories of each them. With it was a CD of all the photos she had taken including one printed on to the CD itself - it was a whole group shot with the "team sicko" written underneath them - of course they felt suitably proud to be labelled with that tag. Mum thought B came home from camp looking so buff because of all the things they did - it appears from the letter perhaps it was due to his inclination to swear of late, 10 push ups for every time he was busted swearing....hey if nothing else it built on his fitness right????

They are sent to mess with your head!

2008-12-06T17:59:00.000-08:00

Every wondered why we have kids? Sure it is to love them, cherish them and all that good stuff - but in reality, they are here to mess with our head, to stop us getting ahead of ourselves!

Take the hormone tornado of Friday afternoon.

Yesterday when hubby and I arrived home after grocery shopping, the hormone tornado (unasked and unprompted) came out and helped unload everything.

Then started putting stuff away! I kid you not! This from the ball of testerone induced madness at the world and all the rules in it, not 24 hours before.

This morning (when I should have been cleaning) I sat at the computer, whilst hearing snippets from the next room of B and his Dad making their home made version of ferrero rocher chocolates. It was really nice and B had the best time and really really enjoyed himself. In the craziness of life it was nice for Dad and son to spend some time together just hanging out doing fun stuff together.

Yup they sure mess with my head and keep me on toes - but wouldn't swap them for anything!

The numbers are in

2008-12-04T23:22:00.000-08:00

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!

The little details

2008-12-01T22:40:00.000-08:00

Well when I left the world of the commercial biotechnology for a job in a school, many a person shook their head in disbelief. Why are you doing that? Aren't taking a huge pay cut? Won't you get bored? etc etc

Sure in my current position, I don't have the pressure, I don't have the long family unfriendly hours and perhaps sometimes not the challenges either.....but...there are other things like seeing young kids engaged in science and enjoying their time in the lab. Getting to try out new and exciting things for them to do in their courses the following year....

But the biggest thing is most definitely being on the ground at my boys' school. I am not a teacher so I don't attract the baggage some kids have when their folks are teachers. However it is because I am around that I really get to appreciate all the little things that happen in and around the school that wouldn't happen if I wasn't so accessible.

Take today...a member of staff saw me in the yard and approached me to discuss an issue that had been forwarded to her, and to get an understanding of the issue for herself.

Then later I returned to my work area to find a message on my phone from the head of special ed. A isn't in the special ed program at his school but he does get the extra time allowance for exams. He is just completing his year 10 exams this week. The message on my phone was the head of special ed checking in with me to see how A was going with his exams. I called her back and she just wanted to see how he was going, if anything else we hadn't foreseen had come up that we might need to look at for next year and the year 11 exams. How cool is that???

See, just because I am only a quick call or conversation in the yard away, I have conversations I know simply wouldn't happen if I didnt' work there - not because the staff don't care but because they get so busy.

Ah yup I sure do appreciate the little things these days....

One down, four to go

2008-11-28T13:46:00.000-08:00

Well A has embarked on the year 10 exams this week. It has been put in the context of more a case of gaining experience in doing exams in readiness for year 11 and 12, rather than it being the be all and end all of their success in year 10.

Yesterday was Italian. No aural component for the exam this year, that comes next year. Instead they had to look at a picture and write a dialogue for the two characters in the picture. A had spent a lot of time studying, but he looked so nervous before he went in, poor little bugger. I told him being nervous was a good sign, it meant that it was important to him and he wanted to do well. I also told him, he had studied hard and done all he could do, whatever happened now, would just happen and there was nothing more he could do.

He came out of the exam feeling like he had done pretty well.

Next up is English. Which is kind of good really, gets the two subjects he feels are most challenging out of the way first, then it is on to PE, Maths and Science.

Impermanence

2008-11-21T20:56:00.001-08:00

A good friend of mine sent me this piece, and it was so brilliant I have to share it here.

It is written by by Judith Hanson Lasater, Ph.D., who is a physical therapist and has taught yoga around the world since 1971. Her latest book is 30 Essential Yoga Poses, and her Web site is http://www.judithlasater.com/.

Whilst I am not a yoga person I love what this article says to me; it really makes you think about things in a whole different perspective after you have read it...enjoy....

After the Laundry, the Laundry

Impermanence is the truth of life. Embracing it in our most basic daily activities can be the key to everyday ease.

Living with a busy family, I often feel just like one of the Tibetan monks I once saw making an intricately designed sand mandala. For months, they bent over the ground, arranging the sand grain by grain, and once their beautiful creation was complete, they cheerfully destroyed it in the ultimate celebration of impermanence.

While I don't create ceremonial mandalas, I do wash the dishes. And when I come back to the sink later, dirty dishes have appeared again. I fold and put away a basketful of laundry, and in no time, the basket is full again. Even my yoga mat is a reminder of impermanence. Just this morning, it was stretched out on the floor, filled up with my movements, and now it leans against the wall, empty and forlorn.

As the Buddha said, impermanence is the nature of the human condition. This is a truth we know in our minds but tend to resist in our hearts. Change happens all around us, all the time, yet we long for the predictable, the consistent. We want the reassurance that comes from things remaining the same. We find ourselves shocked when people die, even though death is the most predictable part of life.

We can even look to our yoga mat to watch this pattern play itself out. We often find ourselves attached to a never-ending process of "improvement" in our asanas. They do improve quickly at first—in the beginning, we are on a honeymoon of discovery; we grow by leaps and bounds in ability and understanding. After a couple of decades, however, our poses change much less. As our practice matures, it becomes more about consistency, deeper understanding, and smaller breakthroughs. This is not to say we won't continue to improve, but the improvement may be subtler. Oftentimes, we can no longer practice certain poses because of age or injury, yet we feel agitated because we assume that the poses of our youth should be the poses of our middle and old age. We are surprised when familiar asanas become difficult and formerly difficult ones become impossible.

What's the lesson here? Experiencing remarkable improvement on a continual basis, it turns out, is a temporary stage. Realizing this puts us in touch with the truth of impermanence; remaining attached to the practice of our past creates suffering in us. In India, the home of yoga, there is a traditional Hindu social model that underscores the change we continuously experience. Called the Ashramas, or Stages of Life, it defines four distinct periods in life, during which people can and should do certain things. The first, brahmacharya (brahmic conduct), is the student stage, during which one learns about oneself and the world; the second, grihastha (householder), is the stage of family and societal obligations. The last two stages focus on renunciation. During the third, vanaprastha (forest dweller), one is freer to begin a contemplative life. And during stage four, samnyasa (renunciation), one goes deeper, surrendering all worldly things and living as a simple mendicant.

The beauty of this model is its inherent acknowledgement of the impermanence of each stage of life. There is wisdom in this awareness—not just because our lives do obviously and unavoidably change but, more important, because when we accept this fact as truth, we suffer so much less.

Without having an awareness of impermanence, we typically fall into one of two patterns: denial or depression. Although we cannot escape the impermanence of life and the fact that we are going to die, we desperately deny these truths; we cling to our youth or surround ourselves with material comforts. We color our hair, Botox our foreheads, and touch our toes. Or, if denial isn't a good fit with our personality, we may unconsciously turn away from the truth by feeling depressed or withdrawn from life.

Yoga philosophy offers an alternative to these tendencies. It is to embrace the powerful truth spoken by all great teachers: the power of living in the unchanging eternal present. The first verse of Patanjali's Yoga Sutra states, "Atha yoga anushasanam," which translates as, "Now is an exposition on yoga." The power of this verse is often lost on readers who interpret the words as an introduction of little value. But in my view, Patanjali does not use unnecessary words. That first word is the key. The verse is intended to underscore the importance of the study of yoga right now. It encourages us to focus on what is happening to the body, mind, breath, and emotions in this moment. Now is a word that is powerful and sufficient enough by itself to be used as a life study, a sort of mantra. The ability to respond to now, to live in now, to enjoy each precious moment without clinging to it or pushing it away is the essence of spiritual practice.

Yoga philosophy as a whole is predicated on the notion that identification with the temporary, changing aspect of reality leads to suffering, while recognition of the eternal, changeless Self leads to peace. In day-to-day life, these concepts seem interesting at best and esoteric at worst. But remembering the eternal in daily conversations, tasks, and actions is really the key to transforming our lives. Unless we are able to return to the "big picture" of our lives, we will be caught up in the minutiae of being late for an appointment or losing a favorite earring. What gives life its juice is the ability to mourn the lost earring fully and simultaneously know it doesn't ultimately matter.

In other words, we can live to the fullest when we recognize that our suffering is based not on the fact of impermanence but rather on our reaction to that impermanence. When we forget the truth of impermanence, we forget the truth of life. Spiritual practice is about remembering that truth and then embracing it. In the past, I kept doing the laundry so it would finally be "done." Of course, it never gets done. Now when I look into the laundry basket, whether it is full or empty, I try to see it as an expression of what life is all about: moving through the different stages, surrendering to impermanence, and remembering to embrace it all.

When doing too well becomes an issue

2008-11-21T01:50:00.000-08:00

Feeling a little frustrated this week....

Granted I am probably not the most tolerant, missing B like crazy - 2 more sleeps til he is home *smile*

Now I have told you before A is studying Italian this year and is doing simply amazing things. However when he has to listen to a pre-recorded piece of someone speaking in Italian, he finds that by the time he has interpreted what he thought he heard, he has missed the next bit.

So we had discussed the notion of having someone read from a transcript then he could hear and lip read to help make the listening part easier and give him equal access to that of his hearing peers.

I spoke to the person who liaises with the external examination people and he didn't think it was an issue as we were not giving A an unfair advantage over his hearing peers, simply ensuring that he had the best chance to hear and understand what was being said.

I saw A's Italian teacher the other day and raised it with him. I was a little non-plussed I have to say. His feeling was that A was doing so well, within the top 2 in his class on the last test, that we shouldn't be making changes just yet, lets just see how he goes. Well he hadn't really read and understood what we were even asking for, as he was talking about it becoming a written comprehension test when it was still going to be oral/aural anyway!!! I kind of felt like he was just saying that because maybe doing things differently was going to be an issue.

My first reaction was to bolt down to the special ed teacher's office and talk to her BUT I didn't. I waited until I could speak to A about it. I asked him his thoughts, and he wants a transcript and a person to read it to him.

I went home and spoke to hubby about it, I was actually quite steamed! This kid has made it to senior school with virtually no accomodations apart from teachers wearing his FM. He isn't looking for an easy ride here, his teachers know him and know he works hard and puts his best effort in ALWAYS!! Yet when he actually asks for something, there is this resistance because "he is doing so well".

YEAH but how about how damn hard he is having to work compared to his hearing peers on that one!! How about the fact he works extra hard all day every day listening in his daily environment to such a brilliant level that his teachers mostly forget he even has a hearing loss. BUT when it comes to one of his teachers having to do something a bit differently, I get, hmm lets not rush into making changes???? I think not!

So today I went to have a chat with the special ed teacher and voiced my concerns. End result we will plan a meeting at the beginning of the new year with everyone involved and get what A needs on the table and in place for him for the start of his school year next year.

Honestly I am still a little surprised that doing too well can work against you - but it seems like sometimes it does - unless of course you happen to have a mum that is a pushy b*tch! *smile*

The world at his feet

2008-11-15T01:04:00.001-08:00

In amongst my missing my baby like crazy his older brother has provided a moment or two.

He is of course studying Italian for the first time. He recently had to listen to a tape of someone speaking and then answer questions about it. He commented afterwards to me that he found it difficult because the person speaking spoke too quickly and by the time he had worked out what he had heard, he missed the next part. I remember Rachel telling me that when she did her French, they had someone read a transcript so they could read a little slower and more clearly so that she could hear what was being said and not be disadvantaged by her hearing loss.

So I have raised that with the folk at school and they are all happy to oblige but of course A had one of these coming up on Friday and time wasn't going to permit the transcription by then so we would just see how he went.

A was pretty happy afterwards telling me that his teacher was generous when he marked it. Further investigation found that he wasn't so much generous as marking the paper based on whether A had understood what was said and what the question asked. For example one was a street name, he knew it was the name of the street it was asking for but only got half the street name when he heard it - but the teacher marked it correct since he knew what was said, and what was being asked of him and gave the correct answer as he had heard it. We will get the transcription happening before the next one.

The most amazing part though came with A's later story on the Italian test. He has always been exceptionally good at "gap filling" in English - if he doesn't quite hear the word the first time, he can usually guess what it is based on the rest of the sentence he heard and putting it into context. We have talked to him about that in terms of his booth results for sentence testing versus individual word testing, so he is aware of his abilities in "gap filling".

So he tells me later that day "I realised just what an awesome gap filler I am today".

"oh really A and how is that?"

"well I head the one word but not the other in the statement in Italian. The comprehension question asked for which 2 words ask the question.... I heard the second, I knew the rule that goes with that type of question, so I knew which word had to go with the second one in order to be the correct question. So I put that one down and got it right, even though I didn't hear it all, I just guessed it with my awesome gap filling skills"

At which point, I am trying to collect my bottom jaw from the scraping on the laces of my shoes. OK I get gap filling in English - but now in the midst of hearing on a tape, in another language, having to remember the grammatical rules of that language - he gap fills to work out the answer to the question?????? What the????

Not a day goes by that he doesn't astound me with his capacity for adapting and just going out there grabbing that ball and running with it!

This kid with his nothing is impossible attitude, sure does have the world at his feet.

oh and for the record, scored 12/15 in the Italian test!!

One week and counting

2008-11-14T00:39:00.000-08:00

one week down, one more to go....

When you are in the rush, rush of here and there in life, it is amazing just how much your kids fill your thoughts and life isn't it? Master B has been gone a week, well actually not quite a week, just 5 days but it seems like so much longer....

I miss his crazy arguments and reasons why he can't start his homework until after he has chatted on msn with his school friends, whose company he left not half an hour before.

I miss his mop of blonde hair that all too frequently I have to address with "you need a hair cut!"

I miss the attempt at rational conversation around "school is gay, teachers are gay, what a waste of the last 10 years of my life".

I miss the fact that even though he is a know it all teen, he still likes the fact that his mum comes upstairs each night to kiss him good night and give him a cuddle (or her cold hands under quilt if the mischevious mood strikes).

I miss having to navigate the chicanes of the meals area in the morning, me with 2 dogs in hot pursuit waiting for breakfast, Jimmi Hendrix junior strumming away on his electric guitar, squeezing in 10 minutes of playing time before we leave for school - his 2 guitars sitting side by side unmoved for the last 5 days are such a reminder he isn't here right now.

Bella, my gorgeous mutt, is also at a loss. Sure I'm here, hubby is here and A is here too - but not her beloved B!! The one who on arriving home every afternoon without fail, drops to the floor to smother her with pats and kisses on the top of her head. She laying there tail beating out that steady drum of pure heaven as she gets that special moment of attention. Then when the cuddles are over, she starts annoying him with the ball at his feet, til he throws it for her - yeah in the house, we are a doggy household - no apologies.

Instead I now find my quiet TV time interrupted with the continual arrival of a slightly soggy, split tennis ball in my lap and a big pair of pathetic brown eyes willing me to just pick it up and throw it for her.

It is an ironic and yet beautifully moving thing - this dear sweet boy who has at times been in the shadow of his older brother's hearing loss, sure leaves a big old hole when he isn't here.

Nine more sleeps to go and counting......

Oh the pampering

2008-11-07T23:58:00.000-08:00

Well there is much that I could be doing - karate stuff like writing the newsletter or typing the feedbacks from the recent grading - but I am finding it hard to settle this weekend.

My baby is off on the experience of a life time Quest Camp!

Quest is a 2 week program run by his school (his brother did it last year) where they are away interstate for 2 weeks, abseiling, mountain bike riding, canoeing, rock climbing and finish with a 4 day hike out of the area. The reason they go for 2 weeks is because the fundamental ideal of the camp is perseverance, resilience, community spirit etc. Time for them to be away from home long enough to realise they can be self-reliant and they can manage by themselves.

It is sooooo going to be the best thing for my baby - we all know how amazing he is and what he is capable of - but he hasn't "got it!" yet. This time away hopefully will help him see that.

He like his brother did last year has gone into that "hmmm I'm going to be away for 2 whole weeks" phase where spontaneous cuddles with mum are a frequent affair, suddenly the other chair in the lounge room isn't anywhere near as good as plopping down onto the chair that mum is on and squishing in next to her. Or if Dad is lying on the bed watching something on TV that is enough of an excuse to stretch out alongside him for awhile to see what he is watching. Dont' get me wrong - loving it! but it is kind of cute to see these big grown up teen boys go through that phase of wanting that bit of reassurance before they go.

And mum??? Well I am not worried about him going away, I know he will be well looked after and will have an awesome time - but well he is going to be away for 2 weeks!!! My baby, the youngest of the nest, gone for 2 weeks.

Sooo what is there to do but pamper him stupid before he goes. Making him yummy special home cooked meals this weekend, his choice of favourites of course. Off to do the food shopping and of course all his favourite snacks landed in the trolley so he may eat like a king before he goes off to rough it in the bush.

Get this I even bought him a Whizz Fizz Christmas stocking today. He looked at it smiled and headed off upstairs to do his thing. I didn't realise he thought he had to wait til Christmas for it lol!! I told him I bought it for him to eat over the weekend - hey is off to the lolly free zone for 2 weeks, he might as well gorge himself now right??? You should have seen his face when I said he could have it now - it was a classic.

Ah yup sometimes it is nice to have an excuse to pamper them and even pander to them a bit - most of the time we are stuck in the responsible grown up parent role where we have to be sensible and make sensible decisions. Not this weekend - we will be in pamper city so he heads off next week full of reassurance on how much we love, how much we will miss him (knowing he will have a great time) and what a special part of this family he is.

A crazy life

2008-11-06T01:03:00.000-08:00

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!

The busy people

2008-10-29T04:38:00.000-07:00

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"...it 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....."

True blessings abound

2008-10-22T23:54:00.000-07:00

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.

www.cicircle.org

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.

The Gift of Speech and Hearing

2008-10-18T16:25:00.000-07:00

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.

Cruising on down memory lane!

2008-10-09T22:28:00.000-07:00

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......

The aligning of the signs.....

2008-10-08T20:55:00.000-07:00

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!

Happy Birthday to my "baby"

2008-10-06T04:29:00.000-07:00

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.

Dance.

Dream.

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.

Enjoy!

Power mums

2008-10-01T17:26:00.000-07:00

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.....

And still there is more

2008-09-18T02:33:00.000-07:00

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

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

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

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

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

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

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

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

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

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

He has no damn right to be that bright

2008-09-05T03:03:00.000-07:00

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

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

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

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

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

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

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

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

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

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

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

whooo hooo!

2008-08-16T23:06:00.001-07:00

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

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

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

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

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

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

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

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

WOO HOO!!!!

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

Perhaps this says it all

2008-08-16T17:50:00.000-07:00

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

oh have the kleenex handy...

Yet more of the same

2008-08-15T01:28:00.000-07:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And so it continues

2008-08-15T01:06:00.000-07:00

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

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

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

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

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

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

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

what a week!

2008-07-27T02:59:00.000-07:00

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..

2008-05-31T16:44:00.000-07:00

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

2008-05-30T04:00:00.000-07:00

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

2008-05-24T18:22:00.000-07:00

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

2008-05-17T16:51:00.000-07:00

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

2008-04-22T02:29:00.000-07:00

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

2008-04-04T02:36:00.000-07:00

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....

Confirmation

2008-03-20T02:29:00.000-07:00

Ok so after waiting that agonising 4 weeks it was off for a hearing test at Australian Hearing. Remember the dog barking incident? Based on that experience, we were pretty convinced we were dealing with a hearing loss!

So off we went with our beloved 2 year old to find out just what was going on. Have you ever seen them test a 2 year old for hearing loss? It is usually done as behavioural testing. The whole gang (audiologist included) file into this large room that is actually a sound proof booth. In it she has a table and a computer and a range of other gadgets used to test hearing. On one side of the booth there is like a smaller column booth where someone outside can access that column. The person outside is armed with a puppet and a switch to turn on a light inside the column.

Ok still with me? So the idea is you distract the child being tested with toys and games on the table. Then when there is a sound being made by the testing gear, the puppet appears in the column and a coloured light lights up the column. Sooo of course the young child needs to associate that when I hear a sound, the puppet will be there. It is supposed to make the child look for the puppet when they hear the sound. Easy enough eh? Well yeah except you as the parents can't look when you hear the sound because then your very smart little pint size will just follow your eyes to find the puppet without so much as hearing a peep.

The test begins, we play with A and distract him. The first couple of times a sound is made we direct his attention to the puppet so he knows that something is going on there. But you see here is the catch! When you can hear two tenths of bugger all and you don't know that there is a sound, and that the sound is your cue to look for the puppet, how in the hell do you know when to look? Short answer is you don't! So you just look over every now and then at random times to see if the puppet is there.

The test continues, it is clear A has no clue what is expected of him and equally clear he is hearing bugger all. And so we increase the volume of the sounds he is supposed to be listening out for. Oh my god, how loud are these sounds, it feels like I am at rock concert with my organs vibrating and the bones in my hear tap dancing on the sound vibrations - but my gorgeous little A, no reaction, nothing - nadda. After testing at a number of different volumes, and a number of different pitches, the story is the same. A is not reacting to any sounds, clearly he can not hear them and so also can not get the gist of the behaviour conditioning of when the puppet will be there.

Well we had prepared ourselves for that right? We knew from the dog barking incident he wasn't hearing right? So we were expecting this to be the case, right?

WRONG!

Of course we had all the logical reasoning and arguments going around in our head before this appointment. Logic doesn't come into it though really when it is your child, the one entrusted in to your care, the one you love more than life itself. No matter how rational and logical you are in real life, you can't help but cling to the hope that it is all a bad dream and you are going to go to that test and see that your child hears just fine and that the nightmare is finally over.

Of course it wasn't. The audiologist used words like "profoundly deaf", "hearing aids" and a whole lot of other stuff that I just don't recall. I tried so hard to listen to take it all in, but the words just washed over me. I wasn't in my body listening to all this information I need to know. I was numb, I was out of my body watching this happen to someone else, to someone else's child. It wasn't real, it wasn't happening - but of course it was. There was the numbness and then there was that feeling like someone had just stabbed me through the heart. This poor little boy had fought to hard to survive meningitis and survive it he did - only to be kicked when he was down and for us to discover he was left with a profound hearing loss. Why did we now have to deal with this? Hadn't we been through enough? Hadn't this gorgeous little boy with the mischevious smile suffered enough already? I don't really remember how we all got home from that appointment, it was a blur of numbness, emptiness and desolation caused by such a feeling of loss.

One thing I did recall hearing was that in order to get hearing aids fitted we needed a referral from an ear, nose and throat specialist (ENT). Of course it wasn't like we already had one of them was it? No need for us and our suburbianly normal family life. There was also a mention of a cochlear implant and that A would be an excellent candidate because he had "normal hearing" prior to meningitis. I clung to those words without really understanding what it all meant.

Lucky for us our paediatrician was truly an angel that walks on Earth and he squeezed us in for an appointment pronto. I thought no-one could have been as upset by the diagnosis of A's hearing loss as we were, but you know the paediatrican damn near was. He kept saying things like "we did the best we could do, we gave him steroids to reduce the inflammation of his brain, we managed to stop the brain swelling, he didn't even have any seizures"....he too was gutted that after all the collective efforts to save this little boy, we hadn't managed to save his hearing.

Our paedatrician would give us a referral to an ENT. We asked about this cochlear implant thing. He was a little vague not really knowing exactly what outcome A might get from one and "in any case the waiting list is like 2 years to get one"

What the hell did you just say?

In the time since meningitis I had heard what speech A did have go from being clear two year old speech, to a very slushy sounding speech that was becoming harder and harder to understand. And that was in like a month or so and now you want me to wait 2 years to give him something that might help him hear again????? I think not people!!! Clearly the paediatrician did not have any more information to give me on this one so I would have to wait to find out more.

The ENT we were referred to actually was the paediatric cochlear implant surgeon for our state. I remember calling his rooms to seek an appointment and his receptionist was adamant that there wasn't an available appointment for another 3 months taking us well into next year...by this time we were about halfway into December.

It is funny when you look back in hindsight, what is it that makes you add in some extra information, that at the time really seems insignifcant to you but in the situation you are in makes the most amazing difference, even though you don't know it? I told this lovely lady that I needed to see the ENT because I needed to get hearing aids for my son so that he could hear again. Meningitis had stolen his hearing and I had to do something to at least try to get it back.

Next thing I knew I was on hold and she was speaking to the doctor. In a flash she came back with an appointment for a couple of days later, would be available? Hell yes, ain't no where else that was more important that we needed to be!

At that appointment we met the most amazing man. This was a surgeon soooo before his time. Before people wrote text books and ran courses on bedside manner, on treating the whole family, on making sure family members had all the information they needed in order to make informed decisions - this guy was so ahead of the game he was already doing it.

I remember writing the address down, it was in a fancy part of town - hmmm megabucks doctor I thought to myself. Well I don't think I could have been any more wrong. We arrived at the surgery to see an old 70's style reception desk and older filing cabinets stuffed to overflowing. The furniture in the waiting room was comfortable enough but its style gave away its age and the years of love it had already had.

Finally we were called and in we went to meet this most amazing man. We were to learn a lot about meningitis that day. You see meningitis attacks the little cells in the cochlea, called hair cells. You see hearing is a pretty complex, pretty amazing process. For more information about how our hearing works check out this site!

http://health.howstuffworks.com/hearing.htm

So A's hair cells had been trashed by the meningitis. That meant no matter how loud the sound was or how much we amplified it with hearing aids, the hair cells weren't going to transmit that message to the auditory nerve of the brain. Another big nastie with meningitis is that the fluid in the cochlear that is usually very water-like is also effected by meningitis. Meningitis makes this fluid change to the consistency of toothpaste and then ultimately a hard bone like subtance.

Given that a cochlear implant goes right into this area, there is a need to get it in there before this happens. This hardening process can take years for some patients but only months for others so we were not going to be waiting around. It was now clear to me why we had jumped the appointment queue. I had mentioned the word meningitis to the receptionist when I called, lady luck and fate were surely smiling on us that day.

Are you one of those folks that complains about the cost of health insurance and how you are sure it owes you more than it has given you? Well we used to think that too! At our visit to the ENT we discovered that a number of cochlear implant surgeries are covered by government each year but the year that A needed it, they had already been allocated. It was possible to try to get funding from a charity like Variety for urgent cases like A if need be, but we were blessed to have private health insurance to cover the lot. At that point in time it was such a godsend, we just had to worry about our beautiful baby boy, not how the heck we were going to pay for his implant and associated surgery costs.

Before any of that though we needed to confirm the level of his hearing loss. This was to be done by Automated Auditory Brainstem Response (AABR). The key to this test is that the child needs to be sleeping. In the case of newborns a good feed and into a settled sleep will do fine, but not so for the 2 year old toddler with attitude.

Ah no for that we have a drug for sedating them so that we can test them. Any parent who has had their child sedated for this test will tell you it is a living nightmare actually getting them to the sedated part. The drug does ultimately sedate them and off to the land of Z they go, but not before turning your world and everything in the immediate area upside down!

They want to get off the bed - ah no, you might fall and hurt yourself.

They whine and grizzle to be cuddled - only to smack your loving arms away and if they are really good, sideways slapping you in the face in the process.

And so it goes on, this continual battle of wills until they finally collapse into sleep. BUT of course this is different for every child so you really don't know just what side of the lottery you are on until you take on the challenge. I can't remember the exact time but I reckon we went close to an hour, and after all that he slept for maybe 20 minutes - 20 minutes!!!! Yep that was it but fortunately it was enough to complete the test.

The test comprises putting a kind of shower cap on their little heads with sensors that touch different parts of their little heads. A set of headphones are put on their ears and sounds sent through the headphones. At first a baseline brainwave pattern is determined in the absence of any sound. Once a baseline has been established a series of sounds are pumped through the headphones and brain wave pattern recorded. Clearly when a child hears a sound they register that sound and that can be seen as a change in the brain wave pattern. We kind of knew a bit about it at that time, not as much as we know now, but we knew enough to know that we should have been seeing something but we weren't. I'm not sure you would call it "flatline!" like the doctors shout when the patient's heart stops and the ECG flatlines, but it was flat enough that we knew this test was just confirming what we already knew - this poor little bugger could hear jack shit!

Back to the ENT we went, yes this had confirmed his level of loss. Realistically he was unlikely to gain any real benefit from hearing aids and if and when his cochleas ossified (turned into that boney substances) hearing aids would be useless. Total no-brainer for us his parents - whatever was the best option for this little boy to hear again, we were on it, where do we sign! If his implant didn't work, we would have lost nothing, but just suppose, what if, what if it actually did work????

By this time Christmas was rapidly closing in and after several months of appointments and the crazy life of two kids under 3 years old, C and and I were starting to run out of steam. I was thinking to myself, yay last appoinment til Christmas at least then we could catch our breath.

Well so I thought!

We needed a CT scan of A's inner ear to make sure there was no unknown malformations that may impact on his implantation or in the decision of which ear to implant. At that time only one ear was implanted, partly because of cost, partly because outcomes were not so well researched, and there was a thought to preserve the other ear for future technology. Now children who have had meningitis are routinely implanted with both sides at the same time in that early surgery.

So it was another day stay at the hospital for a CT scan however we did manage to avoid the sedative from hell. For this they put them under a light general. I was able to carry A into the room and hold him as the anaesthetist put him under for his CT.

One final pre-Christmas appointment with the ENT to go!! Everything was looking good, and A was scheduled for his surgery on January 25th, the day after Australia Day.

At that last appointment, his ENT showed me just why we were in the presence of the most truly, amazing human being and surgeon. He had explained to us the need to move quickly on A's surgery but he also felt a sense that he was rushing us and he wanted to make sure that we were totally at ease with our decision for A to have implant surgery.

He was holidaying interstate over Christmas but was most concerned that we should not be out of touch with him during this time. He gave us his mobile phone number with the words "Any question you have as A's parents is not a silly questions but rather a question that needs to be answered. Ring me anytime over the break if you need to ask me anything, I want you to have all the answers you need to be comfortable with this. If at any point you are not comfortable you say STOP and we will stop. And that is right up until we wheel him into surgery, at any point up til then you can say STOP and we will stop".

Can you believe that? How many surgeons give you their mobile number and tell you to call them while they are on a family holiday? How many surgeons truly empower the parents that this is their decision for their child and at any point they are able to change their mind about that decision? Like I said a total ace in the pack, this ENT. I would later learn that this was just the tip of the iceberg with this particular ENT and his generosity of spirit.

By now I think it was about the 23rd of December and we were totally exhausted. We had a host of appointments after New Years with service providers, including getting hearing aids to trial for the time leading up to surgery.

However for now, we needed some down time. We needed some time just to be together, to reconnect as a family. This was so true for B who had to be baby sat so C and I could go to the appointments together to support each other through this process. It would be our first Christmas together with A not hearing, and also our last Christmas together with A not hearing (well he would be hearing with his cochlear implant by the time the next Christmas rolled around!).

Why did this happen?

2008-03-14T19:41:00.000-07:00

In the heat of the moment and reality of all this happening around me, I don't suppose I really had much time to contemplate "why me?", "why him?", "why us?". Even if I did have time to spend contemplating my navel and the meaning of life, I'm not sure that I would have really had an answer at that time.

Some nearly 14 years later, I have the benefit of hindsight, of life experience and one would hope the gaining of some wisdom to add to the contemplation process.

It is kind of funny really when you reflect on life, well some call if reflection, others call it over thinking....yep I have been offered the title of an over thinker on more than one occasion!

As a kid growing up, I was much like any other kid I suppose. I like to think that I was always pretty friendly and compassionate to those in need. I was of course a total tomboy, far more likely to find me half way up a tree, than sitting delicately in sea of ribbon and lace.....bah humbug, you can't do nothing wearing those things! To this day, I am a jeans and T-shirt girl through and through.

Of course on hitting those teen years, I followed in the path of those before me in to the "self absorbed" zone! The place where it is all about me, me, me. To hell with other people and their problems, I'm alright mate.

I guess I did grow up a little bit as I emerged out of my teens but I don't think that I really captured "generosity of spirit". Sure I was nice enough to the people I met, loving to my family and friends and all, but I was guilty of not really thinking outside the square or realm of my own life. It wasn't that I didn't care, it was more that I just didn't think about it, consider what went on in the lives of others.

Well that was how it was B.A. that is before A!

A, and the journey we have been on with him, has brought so many amazing gifts into my life. How many parents take forgranted the development of their child's speech? Just assuming it will go like clockwork, according to the plan? How many parents just sit back anticipating each milestone, acknowledging each one as they fly by on the pathway they had planned for themselves and their kids?

When your child has a significant hearing loss and you choose the auditory verbal therapy method (AVT), it is a pathway of love, commitment and damn hard work! For those that don't know about AVT, it is an approach that works on the priniciple of having the child use the hearing they have to learn to listen and speak. In our case we were already boosted along the path because A had heard before. For those kids who are born deaf, they need to learn to listen, to learn to understand that when a dog barks, he doesn't just prick up his ears and bounce off the floor, levitating off all four paws. When he levitates, he is actually making a noise that sounds like a bark. Same thing when the phone rings, or someone hits the door bell, the toilet flushing, it is a world filled with a myriad of sound, a myriad that many children born with a hearing loss have never heard until such time as they get hearing aids or a cochlear implant.

The thing about AVT isn't that you go to visit the therapist once a week with your child and that is it! The therapist's job is to teach you, as your child's parent, so that you can go home and "work" with your child. I use the word "work" but to the kids, it isn't work! It is just mum mucking about, playing, having fun with them all day every day. Perhaps one of the best descriptions that I have heard is likening it to "narrating your life". Children with a hearing loss tend not to asborb language automatically in those very young years like hearing children do (though this landscape is changing with Universal Newborn Hearing Screening and early intervention). So where other kids might have just heard it and incorporated it, kids with a hearing loss need to hear the words many more times to incorporate it into their language.

To ensure you maintain the interest of your child you make it into a game, and use changes of tone to keep them interested. The funniest thing is that in a room of parents interacting with a baby (hearing or with a hearing loss) you can spot the AV parents a mile away! You can tell by the way they interact with that child, if they are an AV parent. As far as the baby is concerned this is a very interesting adult, who makes everything so much fun : - )

Sorting laundry becomes conversations about colours, Daddy's, Mummy's, B's...going up, up, up into the washing machine, down, down, down into the basket...you get the picture.

There is a whole of controversy around deafness, hearing aids, cochlear implants, sign language and AVT. I don't know but some of my readers, may get an insight into that depending who comments on this blog entry, but I will cover that another day, another blog topic.

Ok where were we? So part of AVT is becoming your child's teacher and being very involved and supportive of your child in those early years. Inevitably you become an advocate for your child.

For me this whole process was the intiation of a significant period of personal growth. I was well educated, articulate and very passionate about my child. In fact so determined was I that I might continue to advocate effectively for my child, I completed a Graduate Diploma in Special Education, while A was at preschool, so that I would know the lingo, be able to talk the talk and match the bureacrats with their jargon! I was very lucky too, to have such a supportive husband who involved himself in all this and our boys, so that I had the time to study and pursue advocacy.

During that time though, I saw many parents that had been dealt an even tougher deal in life. Not only did their child have a hearing loss but they had other issues in their lives to deal with. Somtimes other children with additional needs, sometimes English wasn't their first language or they were new immigrants, others had just been worn done by the continual struggles of life and it was all the energy that they could muster just to put one foot in front of the other. They had nothing left to give to advocate for their child. BUT their child deserved an advocate too, their child deserved every chance to meet his/her potential to be the best that they could be. No child can help to whose family they are born, it is the responsibility of us all to make sure they all get their chance to shine.

So began my foray into advocacy, something so I discovered along the way, I'm not half bad at! First it was the management committee of the kindergarten, then in a blink of an eye I was president of that committee. During my presidency there were more than a few clashes of horns with the state education department concerning the children with a hearing loss at the kindergarten and the program they had access to.

That led me to the state parent group which provides support and advocacy for parents of children with a hearing loss irrespective of their chosen mode of communication! Yep and then onto presidency of that group too....many years on I am still part of this group and still as passionate today as I was then about the rights of every child with a hearing loss, and the absolute responsibilty government and service providers have in ensuring these kids have every opportunity to achieve their true potential.

In that mix too was a stint on the board of a service provider organisation that my son recieved support from, and of course some time as president of the board...well of course you are saying : - )

Ten years ago this year, together with another mum in the USA, I also started an internet forum for parents of children who are considering a cochlear implant for their child, or whose child already has an implant. The hows, whys and wheres of that one are worthy of a blog in their own right, so you will have to wait til I write that one to find out more.

As much as I have advocated for my child and other children with a hearing loss, my compassion, passion and desire for social justice goes well beyond that! There are so many areas of unmet need in our society today. Too many who are of the "I'm right jack, so stuff you!" mentality. Is it any wonder really that we see so much evidence of social breakdown when so many people are so selfish and deliberately closed off from the problems of others?

This journey has taught me so much about myself and what I have that I can offer to others. My journey with my son has been made easier by those that blazed the trail before me. So it is, that it is incumbent on me to continue to blaze those trails for the future generations of kids to come. Many of those earlier trail blazers are those it is my privilege to now call my friends, those that have inspired me to be a better person and to give back in the way that they gave so that things would be easier for me and my son. So in many ways the dark cloud has had the most glorious of silver linings, and I truly believe that these things do happen for a reason.

I guess the most amazing thing about taking the time to give is that you are rewarded a thousand fold. A bit like positive karma I guess some might believe. I have many emails, personal messages and notes that have been given to me over the years thanking me for being there for that person or for being part of a group that made a difference in the life of that parent or that child. Of course the whole notion of generosity of spirit is that you do it not for the rewards or the accolades, you do it because you can, you do it because it is right and you do it because someone has to.

So to those that know me through A, may you too consider taking up the mantle to make a difference, although the vast majority of you already have! For those that know me from other perspectives or those that don't know me at all and just happened to turn up at my blog for a read, perhaps this post may make you think about how you can contribute to those around you, how you can make an impact for the better on someone who is struggling putting one foot in front of the other.

I have always been a real lover of song lyrics, those that give cause for thought or comment being my favourite. One of my all time favourite lyrics is from the song "Hands" by "Jewel"....so I leave you with these words:

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

taken from "Hands" by "Jewel"

The wonder of the human spirit

2008-03-08T22:45:00.000-08:00

So after 14 days in hospital we finally were able take A home, with a future hospital appointment for a hearing test in 4 weeks time. Apparently we needed to wait 4 weeks in case any residual brain swelling from the meningitis might effect the results of the hearing tests.

At that point, the smallest reason for our greatest joy at that time was having our boy home in our house, sleeping in his bed, his parents finally being able to sleep in the same bed together. His brother able to have some semblance of normality to his life - after 14 days of being looked after by relatives, picked up here, dropped off there, when all he really wanted was the normality of home, and Mum, Dad and A. It was great to be home, all 4 of us together in the same house.

For awhile at home one of us sat behind him, as you would a baby learning to sit upright, in case they topple and hurt themselves. He would still topple completely unexpectedly. He couldn't tell us what he was feeling but he always looked quite confused about how one minute he could be sitting up right, then next lying there staring at the ceiling.

Before meningitis A was the happiest, cheekiest little boy. He loved life with a capital L! The broken little boy we brought home was not the cheeky monkey he was 2 weeks before. He was one angry little monster. Prior to hospitalisation he was toilet trained, when he came home, forget it baby, I'm not doing it, you can't make me, was his attitude. That changed back again over night, and so did his behaviour, but you will have to wait for that story to find out why.

Many a time, he would lean lovingly into his younger brother's pusher, loving and cuddling him or so I thought...til I heard the blood curdling wail and loud yelling and tears, only to see a set of freshly made teeth marks imbedded in B's arm, leg or even hand.

However for all that anger, one day he made it very clear to me that this kid was a survivor and no matter what life threw at him, he was going to focus on that curveball and smack it clean back over the pitcher's head and out of the park! He was able to sit with balance and even crawl a little bit. He still couldn't walk at this point though, he just didn't have enough balance to stay upright for that amount of time.

One day I saw him playing with toys on the loungeroom floor, toys I didn't put in there for him to play with. So around the corner of the door I stood and watched him, unseen from where he was. He grabbed his ride on toy, a fire engine with a seat with that flipped up to store things inside the seat. Using the balance he had, he sat down turned it around and rode off to his room. Once in his room he went to the cupboard that held the toys he was looking for, and pulled the fire engine to a stop right next to it. Carefully he clambered off the fire engine and crawled over to the cupboard. After judiciously selecting the toys that were to be played with today, he began to pile them back into the seat of the fire engine. When it was full, he would put the seat back down, clamber back on and ride it into the next room, unloading his bounty onto the growing pile of toys. I stood there my heart breaking. On the one hand, my heart broke for the fact the he couldn't just walk in and out of his room and carry the toys like he had only 2 weeks before. The fact that he couldn't only served to remind me of how much damage one bacteria can do to the brain of a developing child, the fact that he couldn't reminded me of how unfair it was for my baby to be robbed in this way. But in amongst the hurt, the pain, the fear for the future, was the undeniable amazement of the strength of the human spirit. This not much older than 2 year old toddler was not going to have the inability to walk stop him from achieving what he wanted, and at that point in time it was TOYS! So damn it he was going to find a way around it and get those toys somehow. Which he did, completely autonomously. Through the tears I marvelled at what an amazing little guy we had been blessed with and what an amazing spirit he possessed. Our little survivor, he survived his meningitis and he was fighting back against the after effects, losing his balance for awhile was not going to stop this little guy.

Of course that 4 week wait til the hearing test seemed like a life time. So we did what any self respecting parents would do - we would sneak into his room at night and bang pots and pan lids in there trying to wake him up. Of course he didn't wake up, but again as parents it was our role and duty in life to deny the rational and the logical and cling to the hope and belief that he hadn't lost his hearing. He was just sleeping heavily, it was the brain swelling still effecting his hearing, that is what the doctor said right?

One really beautiful Spring day I decided it was just too nice for us to stay home. The boys and I were going to head off out for a walk in the sunshine, it would be so good for all of us.

So I loaded up my precious cargo into the tandem pram and we were off. It was just so gorgeous outside, the sun was shining, the birds were singing, it was just the most perfect spring weather. We walked for awhile in the sunshine, taking in the sights.

We were passing a house with a painted galvanised iron fence. Why is it that people paint a big piece of rippled metal in colours like green or beige? Do they honestly think it makes a hunk of metal look more natural, or part of nature? Anyway we approached this house, my little unit of 3 out together having fun. Of course behind this fence lived a dog, but of course we did not know that, did we? From nowhere it ran at the fence, hidden from our view but the panacea of beige metal, and it loudly barked its disapproval that we should be passing its house. Well as you can imagine, this came as quite an unexpected shock. Lucky for B he was still in nappies, no-one would ever know, me on the hand well it was lucky that control had not entirely deserted me! B and I jumped out of our skins, literally levitating from our positions, as we were taken by surprise by the nosiy canine on the other side of the fence, barking right along side where we were standing. A didn't even flinch, didn't turn his head, didn't react, nothing, nadda, nil! My heart sank, oh sure I could right off the unconventional pot banging hearing test, I could right of the fact he was soundly asleep.....but here before my eyes this really loud noise was going on less than a metre from his head, and nothing, no reaction, nada. My precious boy, he had beaten the odds and survived meningitis (which the strain he had, has around a 20% mortality rate did you know?) Yeah right great let's celebrate his survival of meningitis and then when you think you might be out of the woods lets just kick you in the guts again because hey folks it looks like he has a hearing loss. I couldn't stop the tears that flowed down my face the rest of the way home. It wasn't a blood curdling wail, it was just the silent flood of tears, of soul destroying reality.

However somewhere inside, that human spirit kicked in when I walked through the door. If this was what we were dealing with now, I needed to know. I needed to have this confirmed so we could start sorting out the what happens next bit. I rang our paediatrician, we were on first name basis by now! I asked if we could move the hearing test forward because I was absolutely sure this little guy couldn't hear. I will never forget his next question; "What ear do you think he can't hear out of?" With all the self control I had to muster and to this day I brim with pride that not a single "f" word did I utter in response (yeah yeah I know you are shocked, because I am not adverse to dropping it every now and then)....my response "Ah how can I tell what ear he is not hearing out of, if he isn't responding to a single sound?" The paedatrician said we needed to wait the last week or so out and do the testing at 4 weeks. So great we had another week or so in which our imaginations could run wild with the worst thoughts and then again the false hope ridiculously daring to believe that maybe the hearing loss was temporary and in a weeks time all would be fine.

As we waited out that time, I found I had to become a different parent to A. I had seen him not react to the sound of a man eating monster of epic proportions barking less than a metre from where he was sitting. If he couldn't hear that, then what could he hear? Me talking to him, me calling him, me asking him not to continue that inappropriate behaviour? What if he was naughty and I thought he had heard me tell him not to and then I told him off. What if this little guy had no idea that I had spoken to him and then the next thing he sees is this angry mummy face and suddenly he is being punished and he has absolutely no idea why? I had seen that look of terror and confusion when his parents allowed those nurses to stick a horse size needle in his tiny chicken leg thighs. I couldn't risk having him experience that fear and confusion again. I made a commitment that unless I caught him in the act red handed where he could see my face right then and there when he was up to no good, then there would be no telling off, no discipline. I couldn't risk hurting this little boy anymore than what he had already suffered. That is the way it would be until we knew exactly what we were up against and what the future would hold.

Til then it was a slow and agonising wait, til we could see the audiologist and find out exactly what he could hear, and what, if anything, we could do about it.

The Pick of the Bunch

2008-03-08T00:21:00.000-08:00

So with "Welcome to Holland" on my mind, I started thinking about the things about Holland...not as they 13 years ago, but in more recent years.

Perhaps it is because I am 13 years older and wiser?? Some might dispute that, they marvel about my adult capacity for immaturity, not sure how they would deal with the thought of the coming of wisdom for a grown adult regularly reprimanded by her hubby for starting a hacky sack fight with one of the kids right on bed time!

Maybe it is more about 13 years of life experience, life experiences and encounters from which I have learned many lessons, so in part very much lessons learned from A. Then again 13 years ago when all this happened, part of me still had a very strong belief that things happened for a reason. Not necessarily a faith of biblical basis, but just a strong fundamental belief that there was a reason things happened.

Prior to his illness, A was just starting to take one to two turn conversations with adults. He was the consumate master at mimicking me as he saw me when I was speaking on the phone. He even had my spontaneous burst of laughter down to a fine art, complete with the laugh out loud kind of laugh I have when I find something really really funny! Many times people had tears running down their faces watching him impersonate me. All in all even then he was showing us just how much of a bright little cookie he was.

Not long after we discovered that he had a hearing loss (more another day on that one!) and that he would have his fair share of challenges to meet in this deal, I actually said to my hubby that I was right things happened for a reason. Many kids who are really bright get accelerated through educational programs and so they don't quite fit anywhere, making those teen years really tough. I was convinced that A had met with these challenges in order to "bring him back to the pack", not to limit what was possible for him, but rather to slow the phenomenal progress to those possibilities that he had already demonstrated.

In our state when a child is diagnosed with a hearing loss, the Education Department sends a guidance officer (GO) to visit you at home. The role of the GO is to come and discuss the range of educational options with you and to ask you to contact each service provider and have them visit you, to help you make that choice.

Interestingly one of the people from one of the service providers was to meet me just that once, because we didn't choose the provider that she worked for then, but our paths would cross again many years later.

In fact she was in a particularly interesting position, not only was she a teacher of the deaf but she was also mother to a child with a profound hearing loss, Big A.

Later I was to see more of her, big A and big A's Dad. In fact, in keeping with the title it could also be lessons learned from big A - he has brought his share of lessons into my life too.

OK so fast forward to kindergarten, are you keeping up here people? I never said that I was going to write a cohesive, easy to read piece now did I?

So when A was at kindergarten, I joined and later became president of the kindergarten management committee. The kindergarten had a special program for deaf children being raised orally. By that time I was pretty outspoken about making sure that all deaf kids in that program had their chance to be the best that they could be. The kindergarten worked on reverse integration where a small number of deaf kids attend the kindergarten with hearing children. The hearing children provide wonderful speech and social skills role models for the deaf kids.

My A finished kindergarten that year, ready for his transition to school. Imagine my surprise when I discovered our state education department was about to reduce some services to these deaf kids at the kindergarten - not closing the program, just reducing the number of sessions these kids could access. Hmmm if you have a pain in the arse president of the management committee at the kindergarten where you want to change things, one would think you would do a little homework before jumping in announcing reductions, wouldn't you? Ah sadly not for these guys.

Of course A and B are only 15 months apart so when A was leaving heading off to school, B was just starting out his time at the same kindergarten! Da Dah yep ongoing president of the management committee was still around the place! In true government shenanigans, these changes were announced as close to the end of year closure as possible, in order to thwart any attempts to make some noise to get these things changed! We managed a few meetings with departmental heavy weights, and actually got one to come down to the kindy to speak to the committee. Well all the words were not worth the paper they weren't written on!

I was furious, so it was off to the computer to put my maddest thoughts on paper, the continual refusal to answer a direct questions, is truly a bureaucratic artform. Someone at the time suggested I contact an organisation called Parents of the Hearing Impaired of SA (PHISA). Time was short in getting my poison pen letter into the department so I had to take the punt to send the letter off and send a copy later to the president of PHISA at the time, with a copy of my contact details should he wish to discuss this issue with me.

Sometime later the president of PHISA at that time contacted me to discuss that letter and to offer to help myself and the management committee take on the department on this issue. The president at that time was Big A's Dad!

As part of my involvement in this fight with the department (we had a big win on that one!) and PHISA's involvement supporting the process, I became more involved in PHISA, eventually taking over from Big A's Dad. It was through this organisation I got to meet Big A, and meet Big A's mum, that same person that came to see a a few years before to talk about the service she worked for.

We had social activities and a family camp every 2 years for PHISA so we got to know many families with kids with a hearing loss. They were and still are part of the many great things about Holland.

However it was different with Big A and his family. Big A is about 5 years older than my A and he too had a cochlear implant, so he was like my glimpse into the future of just what might be possible for my A. Oh and what a glimpse it was, talk about the poster child of success. He was articulate, he was confident, he was just amazing.....in fact he is still all those things and more today!

His parents - hmmm- trying to put them into words is not easy. You know there are lots of great people in the world and you meet them and you think to yourself - hmm lovely people I like them and you become friends etc etc.....

But then there are a small handful of very special people. What is it that separates these people from the "run of the mill" nice people. The only way I can find to describe it is their spirit. There is something about these very special people, a spirit of warmth, of generosity of spirit - shown by a willingness to help out other people without hesitation. A genuine caring about other people and a desire to make the world a better place when they leave it, than it was when they came in.

That in a nutshell is Big A's parents. So it should come as no surprise then that Big A is turning out to be an amazing young man, very much in the mould of his parents. He too is a very warm, caring, young man with an awesome sense of humour and a quick mind. He continues to impress me with his achievements and he is already volunteering his time to help younger deaf kids in their more difficult teen years at school. Yep another one on the road to making this place better than it was when he came in!

So in the bunch of tulips here in Holland, these guys are my pick of the bunch! With the crazy selfish nature that seems to pervade much of the world today, there is truly such a need for the special people. It is incumbent on all of those that have come to this a little later on the path that we continue to improve on things and make things better than they were when we came in.

Welcome to Holland

2008-03-07T00:02:00.000-08:00

WELCOME TO HOLLAND
byEmily Perl Kingsley.

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.