Thursday, February 17, 2011

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 64th 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

Friday, February 11, 2011

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.....