Long Time No Blog

Long Time no Blog

Have you ever had that feeling in your stomach that feels like a tightly wound up ball – this is the ball of frustration, anger, hurt and sadly sometimes defeat for me.  I have this ball in my stomach just about every morning.  Even when I try so hard to take out all the variants – School clothes are clean and easily found in cupboard, – shoes out and ready, blue socks with the red pattern clean and available, lunch is made (white bread, no butter) porridge is perfect consistency...... 8.04am not much longer we are on the home stretch, I’ll soon be able to breathe.......hold on.....ALERT ALERT. we have a variation “I can’t find my fake money that we need for School.... you vacuumed it up!!! It’s your f-ing fault you f-ing piece of shit”... slam, crash, bang – everything falls apart and we were soooo close!  Keep cool and calm .don’t show your anger at the fact that a 9 year old child speaks to you in that manner... just get him out the door without losing composure.  Goodbye Mikey have a great day (in a pleasant yet firm voice)..........breath now the cyclone is over for another morning congratulations BT you stayed in control... you now have permission to fall apart for 5 minutes and then get on with your day.

This morning was a 2 ½ to 3... yes we rate our mornings.  The positives being no violence towards me (a small stoush with Milly nothing substantial), no weapons, Mikey stayed in bed until 6.30 am (Mikey has been known to be up the whole night), no food scavenging (yes I do feed him – but he likes to forage!) and he got dressed and ready for School with little protest.  Rating 1 mornings don’t run so smoothly – Often I know if it’s going to be bad as he will have a wild, distant look in his eyes and for want of a better word he is unreachable – On these mornings my 5 minute cry will run a little longer.

I know it has been a long time between blogs, reason being I have found this phase difficult and even more difficult to write about.   I’m sure our friends and family were really praying for a fairytale ending after our trip to the States and Mikey’s wonderful new ear.   I really wanted to deliver that ending.... the truth isn’t so Hollywood and I want my blog to remain authentic so I just didn’t blog at all as I was concerned with it all being a little too confronting.   Some of our experiences, upon looking back are actually quite funny (we really need our sense of humour at the moment)  Milly and I were under attack one morning – we were totally defenceless while Sniper Mikey was on the top of the stairs  showering us with nurf bullets... and I must admit I did smirk when I heard Mikey muttering to himself that he wished he had a dad with a brain -  if only he could channel that quick wit for good rather than evil!

It’s very hard to keep control when abuse is being hurled at you by a 9 year old.  I think to myself I am a 41 year old woman of reasonable intelligence, how is this happening, Shane makes a living out of arguing and yet this 9 year old boy has us exasperated, sad and worried for his future. 

Luke once said to me “do other kids know what I go through? I feel sad for you and dad too” I worry how witnessing Mikey’s outbursts affects our other children.  Luke has turned out to be a kind, sensitive little soul, for this I am grateful and I really hope he leads the way for Milly to follow - that’s a lot of pressure for a 7 year old.

 I am lucky that I have some beautiful friends that just know when a hug is in order... we don’t have to speak or dissect the situation just a hug and coffee is all that is required.  I’m also quite sure they would never allow me to wallow in self pity – they are always quick to point out the humour in all things Mikey and I know that they love him warts and all just as we do, if only he realized that he may just give up on testing out our boundaries quite so often.

After I took the cup off

After leaving Palo Alto (Nth California) - we headed along highway 1 which proved to be the beginning of one of the most scenic drives I have ever been on. After a night in Monteray and a trip to the aquarium for Mikey and Shane - we were spoiled with sights like dolphins playing really close to shore and seals basking in the sun. Mikey liked the squirrels (although they are considered pests as they eat all the vegetation and cause erosion on the coastline). Carmel was another gorgeous spot we explored - I was hoping to see Clint Eastwood - former mayor, but no such luck.

We arrived in Beverly Hills on the 29th and I had a great run - ran along Beverly Blvd - past
Rodeo Drive and Santa Monica Blvd up to the exclusive residential area of Beverly Hills. Hugh wasn't out - I'll try again next time we are up that way. Hugh, George, Brad - I'll run with Any of them.

We were proud of Mikey yesterday when he got to see his ear - it is still very swollen and sore and he handled it well. He has been a little emotional today though - we all have too some extent - we are really trying to have a good time while we are here - but some days are a little difficult - he is soldiering on though and we do see sparks of positivity.

Mikey:

When dad,mum and I got to Beverly Hills we went to our hotel it was called Residence Inn while mum ,dad and I settled in it was about 2.00pm. Then I went on my iPod for 6 hours then we had dinner after that I went to bed in the morning we went have some breakfast and then have a look around. Once we had finished looking around we went to see the doctors and they took off my cup my ear looked yucky and swollen but I knew it would heal. Here are some pictures.

Mikey's Blogging

So far I had met a boy named taj who had the operation the the day before me. I would say he is the nicest boy ever I am glad I am not the only one having the operation. On Saturday I went to the zoo with dad while mum had a look at the shop called Macy's it was a small zoo but it was worth going to plus it was free! Then we went to pick mum up but I didn't want to wait so we had lunch at McDonalds dad had a whopper cheeseburger and had I had 10 nuggets 2 cheeseburgers and a lemonade then mum turned up their it scared me (like a ghost,) anyway I was going to tell whoever is reading this how I feel well I feel tired sad in pain and sick any way I also have an itchy head it is itching like crazy.

Eve of Op

Hi everyone,

Well it's the eve of Mikey's big operation and I'm sitting here writing this while Shane takes Mikey for his last swim for quite some time.

We visited our doctors today and spoke about what will happen tomorrow and the most important think to Mikey is the fact that he can't have breakfast! He's been eating up big today. Sausage Skillet with chocolate waffles for breakfast, crab and corn creole and a root beer for lunch, ice cream sandwich for afternoon tea with a massive plate of pasta for dinner followed up with a handful of Oreos!!! my skinny little guy actually has a muffin top today!

He's in good spirits and is well aware that tomorrow is the biggest day of his life! He said he'll miss his little ear - I will too.

When we were in Auckland we bought Mikey a Koru this symbolizes strong growth and new beginnings - he wears it as his lucky charm - we thought the meaning was very poignant it also looks kind of like an ear.

Mikey:

"I feel excited, happy, nervous but hopefully the operation will go well. Thank you everyone for helping."

I second that - well put Mikey.

We will keep you all posted tomorrow probably via Facebook it seems to be the easiest thing to get onto - we are in Palo Alto after all (the birth place of Facebook).

Love to all xxxxx

The Countdown Has Begun!

Well our little adventure is almost upon us and it is with much trepidation and anticipation that I set my fingers to keyboard.

We leave for Sydney on the 11th of June to drop our Lukey Luke and Miss Milly off - I tear up every time I think about how much I will miss my babies.  Mental note: do not mention Disneyland in front of Luke  - I made that mistake this morning.  Lukey Luke has been a little more emotional than usual as he is old enough to know that we will be gone for a whole month.   I remember being 7 and 4 weeks seemed like a lifetime.  We are all skyped up so hopefully that will ease the separation anxiety a little.

Things haven't been smooth sailing with Mikey of late either the reason being - who knows!  It could be a number of things:-

* anxiety of the upcoming operation;
* not getting his own way all the time (this being the most likely)  Mikey thinks its quite reasonable to be playing on an i-pod at 3.00 am (to him this isn't a problem!);
*being 9 and becoming more aware that he is a little different;
*kids at School being more aware that Mikey is a little different.

I was a little sad for Mikey the other day when he was crying about "why god gave him one ear and made him have Asperger's Syndrome"  he was inconsolable - partly because he was too busy crying and shouting to God and he just wasn't able to listen to us when we pointed out all the good things in his life. 

Mikey is having some theological issues at the moment! This morning he informed me there was no God because if there was a God - God would give him everything he wants!  I tried to explain to him that God doesn't work like that he is more a teacher teaching us life lessons - Mikey considered this explanation quite ridiculous as he takes everything so literally he was quite sure God didn't appear in a class room, coffee cup in hand (*short sleeved shirt, bad tie) ready to talk about punctuation.  (* sorry to all my teacher friends - this is what my male teachers were like!) - except for you Mr Williams ... just remembered you're a facebook friend!

I don't think I can be very convincing when I'm not sure about God myself - my belief dwindles sometimes - what I do believe is we should try and be kind, not hold onto anger because it will make us sick and lead the best life we possibly can ....mmm Oprah moment! or should I say Aha moment!

On a positive note - Shane and I are looking forward to spending time just with Mikey so we can heal some wounds and re-connect with our little guy - I know that he will love spending some one on one time with us and perhaps we can dig deeper with him and get to know our little guy more - as much as we are able too - connecting with him emotionally is very hard and sometimes we are left disappointed - we have to stop feeling like this and be grateful for every little step no matter how small.

Shane and I have also decided to keep our training up and even step it up if possible (depending on how well Mikey is doing).  I have already been in touch with Chris Clarke, the President of Huntington Beach Surf Lifesaving Association so perhaps we could paddle our way down the Coast of California - what an experience that would be!  Stay tuned for any sporting endeavours (its all about the T-Shirt really!).

Signing off - will blog closer to our departure.

xxx B

Footprints

One night a man had a dream. He dreamed He was walking along the beach with the LORD. Across the sky flashed scenes from His life. For each scene He noticed two sets of footprints in the sand. One belonging to Him and the other to the LORD.

When the last scene of His life flashed before Him, he looked back at the footprints in the sand. He noticed that many times along the path of His life there was only one set of footprints. He also noticed that it happened at the very lowest and saddest times of His life.

This really bothered Him and He questioned the LORD about it. LORD you said that once I decided to follow you, you'd walk with me all the way. But I have noticed that during the most troublesome times in my life there is only one set of footprints. I don't understand why when I needed you most you would leave me.

The LORD replied, my precious, precious child, I Love you and I would never leave you! During your times of trial and suffering when you see only one set of footprints, it was then that I carried you.

---

Carolyn Carty, 1963

Real Gazelle Wear Lorna!

Real Gazelle Wear Lorna!

Once upon a time there was a herd of beautiful Gazelle who loved to run.  These beautiful Gazelle would meet every Wednesday, Friday and Sunday at the local Surf Club decked out in their Lorna or LuLu and just enjoy the freedom of running – whether it be rain, hail or shine!  The Gazelle were sometimes, unkindly, referred to as Buffalo... this made them sad!  Others said they hogged the path to which they gracefully glided by always staying to the left!  Someone even wrote a nasty letter implying they talked too loudly whilst running at such an early hour– The Gazelle simply shrugged this off - secretly proud that they were able to engage in robust conversation whilst running at such a speedy pace!

While the herd ran they helped solve each other’s problems like how to run four minute k’s, or the most efficient way to run hills or what to prepare for the evening meal!  The herd were always there for each other.  One particular Gazelle (let’s call her Barb) had a dilemma!  Barb’s dilemma was how to come up with lots and lots of money to pay for her baby Gazelle’s big operation in the USA.

Katelin the herd’s Assistant Coach got to thinking... Katelin thought maybe the rest of the herd could lock their horns together and raise some cash.  Katelin with the help of the herd leader Nic and the other Assistant Coach Briony opened a special bank account in the name of Baby Gazelle Mikey – Jordan (token male Gazelle) who also manages Westpac Bank at Buderim helped make this happen.  The herd sent out the word and friends and colleagues from far and wide dug deep in their pockets -  even after the lands had been ravaged by floods!

 Fearless leader Nic then invited Gazelle Barb and her family to the Surf Club under the guise of "Trent's Birthday Shindig".   Midway through the festivities Ass Coach Katelin got up and said she had an announcement to make – Barb immediately became melancholy because she thought the announcement was Ass Coach Katelin was moving back to Newcastle.

Katelin then presented Barb and Shane with a giant kick ass cheque in the sum of $3,000.00.  Shocked just wasn’t the right word to describe how Shane and Barb felt.  They were completely taken aback and extremely moved by the generosity of friends and colleagues.   Baby Gazelle Mikey was very happy!

The End....

Please don’t think I’ve gone all Charlie Sheen – I found it easier to write in “fairytale form” today.

 I'm using this blog to thank you all.

Thank you thank you thank you:-

Dave and Katelin Mayfield
Briony and Ross McSwan
Brad and Jill Toye
Nicole and Trent Brumby
Melissa Crothers
Tracey and Andrew Buhk
Carmel and Andrew Larkin
Greg and Dana Craven
Tim and Kate Craven
Carrolyn and Peter Watt
Kylie and Brenton May
Jackie and Luke Goldston
Schultz Toomey O'Brien
Medicine on Second
Maxine and Pacey Mitchell
Sam and Ant Williams
Jordan Spencer and Jackie Prentice
Judi and Nige Cameron
The Law Society
The Mooloolaba 5km Handicap (who raise money for us every week)
Kathy Sheeran at Shopping Confessions
Tanya Taber at Moves Travel for all your hard work on our travel arrangements
..and all the other running chicks who provide us with help and support and most importantly laughter! Choco Woman!

Shane and I also need to thank Scotty and Lee Falvey – who have made a massive donation to “Operation Mikey”.  Scotty and Lee Lee also have another fundraiser for Mikey in the pipeline – I’ve given up protesting this as Shane assures me it’s no use!   Scotty is on a mission!   Thank you Lee Lee and Scott we have been touched by your generosity we love you. xxx

We now intend to “pay it forward” we have been so overwhelmed by everybody’s kindness and generosity we plan to keep up the momentum.  If you have a cause or fundraiser you would like some assistance with please let us know.

Feelin the love xxxx

Barb, Shane, Mikey, Luke and Milly

I'm the Mum of the Naughty Kid!

I’m the Mum of the Naughty Kid!

Well a week has passed and I’m ready to share!

Shane and I are very lucky and very happy with “our lot” in life.  But to be honest being a parent has its challenges I think most of us are aware of this.  Being a parent to Mikey has what I would call “extreme challenges”.

Some words to describe Mikey

Loving, intelligent, funny, infuriating, lazy, aggressive, endearing, joyous, kind, selfish, quirky, temperamental, curious, stubborn!!!,

Mikey has always been a little different.  I was constantly being hauled into the kindy room for various meetings to discuss strategies to “curb” Mikey’s behavioural issues – biting, pushing, hitting, scratching etc.  We spoke to various professionals and it was decided he was still very young and he may just be getting frustrated in noisy environments due to his hearing impairment.

Shane and I would lament “what are we doing wrong” this was our first child and we seemed to be just ballsing things up – what did other parents do that we weren’t doing!  Well the fact of the matter is – Nothing.  So to all those behavioural professionals full of condescending advice – Up Yours!!!

Prep

By the time a child starts prep – they usually have the “sharing, taking turns, not hitting out issues sorted”.  Not so for Mikey – again I was more often than not cornered by Mikey’s prep teacher – just letting me know of the “incidents” that had taken place that day.  One incident sticks in my mind simply because it gives an insight into Mikey’s logic.  The children were all lying on the floor having a rest - they all had their shoes off.  Mikey bit a boy’s toe – when his teacher asked why, he replied matter of factly “because I wanted to see who it belonged to” – this made absolute sense to Mikey.

Another prep incident that sticks in my mind for a different reason was when Mikey, while soaring through the air, on the flying fox lifted his legs and kicked a boy in the stomach at full force– the boy then fell backwards off the platform.  Mum (understandably so) is ropable and not your shy retiring type - either.  After avoiding being beaten up by an irate mother I slink home with Mikey in tow feeling absolutely mortified and defeated.  While walking off another mum well meaning, if not slightly misguided, shouts at me – maybe he’s got ADD – I burst into tears.

After using the hearing impairment as an excuse for quite a few years Shane, I and his teacher start to think there is definitely something more to this.

A Label is a Label is a Label

We visit our new paediatrician and do the standard questionnaire – after a few more visits and discussions with our doctor, teachers, psychologists, plumbers, checkout chicks and the milkman  Mikey is diagnosed with Asperger’s Syndrome (ASD) Autistic Spectrum Disorder.  Most parents would probably be devastated at this kind of news.  Shane and I were relieved it helped us shed some guilt and answered some questions.  It stopped us asking ourselves – what are we doing wrong!  We then started asking what do we do now?...

Obviously it didn’t solve all our problems we still have challenges every day – Most ASD kids have obsessions – Mikeys is computers – anything computer orientated he is extremely good at and extremely addicted too.  This leads to countless tantrums and very difficult behaviour.  Sometimes I would like to throw everything with a “screen” in the bin.  Shane and I don’t see eye to eye on this issue (Warning Techno Geek Alert!) and I’m not talking about Mikey!

The sad fact of the matter is we have lost friendships because of Mikey’s behaviour – I think some people decide it’s just too hard and I can understand their point of view – this is not their burden to carry.

Our Laurels Are Not Rested

Since Mikey’s diagnosis we haven’t just rested on our laurels and made excuses for him.  We are constantly battling to think of ways to help Mikey in social situations.  It can be very frustrating explaining for the 64^th million time its not ok to hit someone or push someone simply because you don’t like how spit forms in the corners of their mouth when they speak – or its not ok to dislike someone because they have red hair (particularly amusing for obvious reasons)  

We are not alone in our endeavours we have a team of people that really care for Mikey.  Mikey has two teacher aides that he is very close with – sometimes the tensions is so high at home I think he is glad to go and see them – for this I am very grateful to them – when all sense of rationale is lost at the Petersen household Mikey can walk into a calming environment known as “Kanjini”, listen to his relaxation music while Helen massages his head – Oh yes he thinks he’s a rockstar!  Thank you Helen and Maxine we love you both xx

The Beginning

A Very Brief Overview

Well here it goes... first blog ever by a technical retard.. so bear with me.

Most of our friends and family are aware of the journey that Shane, Mikey and I have been on since about January 2002.  We were pregnant and over the moon about the upcoming birth of our first child - due June 2002. 

Excitement turned to fear of the unknown when my membranes ruptured and I leaked amniotic fluid for the next four months.  Most of you in the know are aware this is NOT GOOD! VERY BAD.  Some dangers include infection leading to loss of life for baby and hysterectomy for mum!

We held on with  grim determination - knowing Mikey now I'm not surprised!  cutting an extremely long story short - Mikey was delivered at Mater Mothers by cesarean at 32 weeks gestation.  Mikey weighed 1900 grams (that was big compared to the other little mites in intensive care).

Mikey, quite amazingly, was born very healthy and only spent his first night of life in intensive care - after this he was taken off the C-Pap and taken into the special care unit.  The object now was to fatten him up and assist him with feeding - babies do not gain their sucking reflex until about 36 weeks gestation.

It wasn't until the next day we noticed Mikey's little ear - this was because as soon as he was born the nurses placed a hat on his head which his breathing apparatus was attached to.  To be quite honest at the time his tiny little ear was the least of our concerns.  We were just so happy to have a healthy baby.

I will come back to this at a later date.... so many trials and tribulations to share.

The Here and the Now

February 2011 - We are lucky enough to have been given the opportunity to fly to the United States and have some very skilled surgeons perform a very difficult surgery on Mikey.

The operation takes place on June 21 2011.  The procedures will be performed, firstly by a very talented ENT Surgeon called Dr Roberson - Doctor Roberson will perform surgery on Mikey's deformed inner ear canal.  Dr Roberson will open up Mikey's ear canal to enable him to hear from his right ear (this is an extremely simplified explanation).

Dr Reinish our plastic surgeon will in essence create an ear for Mikey.   Mikey's new ear will be created from a synthetic material known as "Medpor".  Dr Reinish carves the shape of an ear from this Medpor material using a template from Mikey's left ear.  The Medpor ear will then be covered by Mikey's own skin and membrane.  atresiarepair.com

Great Day Today

Today is a great day because our flight is booked!! We are very excited and scared all at once.  So now marks the beginning of another journey.....