Don't tell anyone

Shhhhhhh........ I have a secret.

Please do not tell anyone because it may "jinx" us.

2014 is turning out pretty good.

I have a job that I am really starting to love.
My sarcastic humour is starting to come back (thank god!) and Scott and the kids are really enjoying life.

Cannot get much better than that.

This morning, Tom styled his own hair......
It is spiky !!!!

Amelia has become quite relaxed in speaking up when she needs "time out".
Tom is Tom and we love him.
Scott is becoming more involved in the schools, home duties and smelling the roses.

Today, something hilarious happened.
I try to take Tom into school every Thursday.
I try to check in with his teacher and make sure he is ok (especially behaviour wise).

As we walked across the school crossing today, I was heard to loudly announce "Oh crap. Do you have a day off tomorrow Tom?" I ask. (Curriculum Day).
Because it has not been mentioned at home, I realise it has not been noted.

Scott had something exciting happen last week.
Something I cannot talk about (why am I surrounded by situations I cannot talk about?!).
Anyway.......he is busy EVERY Friday........ possibly helping someone.

Tom has a day off school.

Enter saviour Number 1 "he can come and play at our house".
Tom rarely plays at ANYONE'S house, so he is SO excited!

Amelia has been invited for a birthday party sleepover.
Another person excited.

I am loving so many areas of my work BUT I am NOT allowed to talk about it (jeez!).

Reminding you the of the story....... back to our morning..........
Tom comes running out after morning bell and says 
"Mum it is school photo day. I do not have my form or my money".

I look at his spikey hair and laugh.....like REALLY laugh.

2014 is going to be a year to remember......
for all the right reasons.

xxx

2014

Hello !!!

Well everyone pretty much knows that I am back to my old haunt of Kindergarten teaching by now.
That is teaching 4 and 5 year olds in the year before they start 13 years of schooling.
Quite often that means recognising special needs for the family for the first time, learning through fun and play, practicing social skills, creating a community for families and preparing children for the following year.

I warned Scott before I took this permanent position that it is full on.
A Kinder teacher NEVER does the hours they are paid for.
Ideas, purchases and general work is constant.

I am lucky because Amelia and Tom love hearing and helping me with these parts of my job description.

Today, Amelia and I volunteered to attend a community event to "sell" our Kindergarten.
Amelia had so much fun it was hysterical.
She was "selling" the showbags for us.
I made the children and parents give her the money when purchasing.
It was obvious that not only Amelia enjoyed that....but the customers did too.

The community involvement extends to my family too.
(Tom has returned from Nana and Poppy's very annoyed that he did not attend too).

My last blog shows the affect that teaching again has had on me.
I question and doubt myself.

I want these parents to get the best teacher they can.

This weekend, I am focusing on what kind of teacher I am now.

It is not greatly different than I was previously, except for one major factor.
It is not SO "pre planned".

I am so much more spontaneous......kind of like a parent.
My poor new assistant must feel like she is on a roller coaster !!!!

My creative urges combined with conversations with the children and noting their interests is creating a very exciting but full on program.

Lets cook !!
Lets make a book !!
Lets ask this parent to help us with this !!

Something I have ALWAYS done though is involve the children in every step of the way.
Let them ride the rollercoaster of excitement and add their ideas as well.
Let them see the mistakes I made with the planning and know we are all human.

So much fun.

I am enjoying the interaction with both the kids and their families.

It has also made me a better mum.
My activities and conversations with Amelia and Tom are so much more exciting because that part of my brain has been switched ON.

It is highly stressful and I am exhausted BUT the house is no longer 90% of my focus.
Kinder is.

Everyone keeps commenting on what a different person Scott is.
He IS smelling the roses and he IS happy.
(He has stolen all my school mum friends BUT ...... LOL)

Adjusting is so fucking hard.
Especially on the level we have forced ourselves to do.
But when you have a "normal" child and are told to "take them home and enjoy single minute you have with them"........ This is not as hard.

And sometimes........just sometimes...... Leaving your comfort zone opens a whole different world, and it is not a bad place.

Below is a photo of Scott and I when we were about 18 years of age.
A lifetime away from where we are now.
It was taken at the "Party House".

Not a care in the world........

xxx

work / life balance

What an interesting moment in time this is for myself and my family.
APPARENTLY I am not allowed to talk about work on social media, so lets talk about other things......

Self assessment on yourself as a person ???
Assessing where you are and what you have achieved at this point in your life ??
Looking at what type of person you are and how you can change or adjust??
What kind of day to day life you want ???

Yep that sounds good.

I ALWAYS assess everything that I do.
Always stand back and wonder whether it was the right thing.

Work aside, because I am not allowed to talk about that, my social life has taken a new kind of twist lately.
I can talk about that because it closely affects Amelia and Tom's life.

Recently we have been getting together with people that are kind of new, but kind of not, in our lives.
"Meeting with" means talking, drinking, eating and spending time with.
They are not judgemental nor do they come to us with preconceived views.
It appears they just accept us for US..........post EVERYTHING.
The new US.
Post Amelia diagnosis and everything else.

We have fun.
Probably too much fun.

Saturday night we attended a Trivia Night for Amelia's Special School.
I relaxed and had fun.
The next day, I regretted making a speech from a "parents perspective" in front of 350 people.
I was worried that I put a "dampener" on the night.
It was spur of the moment and I ....... well........ I just went with it.

I explained EVERYTHING.\
And I mean everything.

I wanted everyone in that room to understand what kind of children they were there for.

But now I deeply regret it.
I should have just stayed in my seat.

When I was growing up, I knew someone that drank alcohol and had to be the centre of attention.

I DO NOT WANT TO BE THAT PERSON.

I feel like I may have been "that person" Saturday night.

Self Assesment.

Tonight a compettition is occuring in our house.
Who can make the best Milkshake.
Amelia has always been the winner........
but tonight she has challenged us all.

Tom said to me "Find out which one is hers. She needs to win cause she has AT".
I said "No. The best one needs to win, but so far she makes the best one".

Tom is amazing BUT special needs does not always need the sympathy vote to win.
The BEST can sometimes just win alone.

Work AND home life is tough but I am thankful that Scott is here for Amelia's and Tom's emotional stability.

xxx

PS Has anyone got a really amazing chocolate milkshake recipe.
I need to win.
LMAO.

Diabetes

A funny thing happened today.

I stayed home (on what is not a work day anyway) to try and recover from a delightful chest infection.

Juvenile diabetes rang to ask how our family is coping with Tom's type 1 diabetes.
As I explained that we are fine she commented on it being a "major shock and one we must be struggling with".
The realisation then hit.
I could not help but laugh at the lady on the other end. (Quite rude I know).
I then proceeded to explain that Diabetes is really nothing in the grand scheme of things in our lives.
The main negative was that it happened on Christmas Eve.
I explained Amelia's disease BUT then I explained Tom.
When Tom is not feeling 100% he insists on doing a finger prick and blood glucose reading.
He will then tell us what he needs to have to eat depending on the reading.
Long lasting carbs or fast acting sugar.
He knows which products give him the substance he needs.

Tom is 7 years old.

His behaviour and social skills are improving greatly and ....well.... I am very proud to say he is my son.

In this phone call today, I said we were fine and that dealing with a rare disease that IS terminal is what we compare it with.

So glad that I am over the meltdown and depression after Tom's initial diagnosis.

HE (not god, Tom) has shown us it is no big deal.

HE (once again NOT god) was given to us for a reason.

The is kid is going to be famous one day, even if it is just amongst family and friends.

xxx

2014

Hello Everyone.

School is back.
Work is back.

Routines are being established.

Scott began the year by typing a magnificent "document" explaining diabetes to Tom's new teacher.
It included when to test his blood glucose and what to watch out for.

So proud of him.

He also began the year with checklists, getting up early and keeping the kids calm with their first day jitters.
When we all arrive home the house is tidy and organised.
Love it.

Tom has adjusted back into school easily.
His blood glucose levels are all over the place, but we expected that.
The excitement, level of exercise and stress can all affect levels.
No doubt his insulin doses will need to change in the coming weeks.

Tom has also come home, proud of his new "social skills".
He is excited that he is maturing and recognising where he needs to change.
Tom is excited by the new friendships he has started developing.

Amelia has adapted to "change" fairly well.
So many of her friends graduated to secondary last year, so this year Amelia and Jackson need to find new friends.
Finding new friends at a "special school" is slightly different than mainstream.
You need to learn communication methods and personality types.
There are children that have "triggers" for angry, upset or scared behaviour.
There are children that "think" age appropriate but cannot communicate like everyone else.
There is that "connection" you need to make to establish and enjoy a new friendship.
Amelia recognises all of these issues and is hoping for it to happen sooner, rather than later.

I have started a permanent part time position and really think this place chose me, rather than I chose it. My head is now above water.

Hope everyone is enjoying their 2014.

xxx

Still Pro-active

My brain is in overdrive.
There is so much happening.
Lucky I just had a weekend of sleeping, sitting on a couch and filling my mouth with food and drink!

Yes people. You heard that right.

My husband threw me out on Friday afternoon.
Told me to go to my parents empty flat in the city and not come home until Sunday.

I LOVE LOVE LOVED IT !!!!

Just what the doctor ordered.

As I was leaving Tom became very clingy (normally it is Amelia).
The kids have become very used to the WHOLE family being at home day and night.
Despite my mother guilt, I was able to say "I need to go so that I can be a better mum next week".

Both children accepted this comment and enjoyed a fabulous weekend with their dad.

I, on the other hand, read and became obsessed with a new TV show on DVD.....
Friday Night Lights.

Scott had both kids on his own while I lived the life of laziness.

Sunday night, Scott's best friend from Primary School (and his wife), requested both of our children for a sleepover.
I returned from the flat to help back their bags, drop them off and then go out for tea with my husband.

Something like this appears so small........ but it is actually HUGE !

No responding to Amelia's calls of assistance and what Tom should eat.
No helping Amelia to eat or drink and when Tom needs his next needle.

Just PURE adult time and adult talk.
(Not dirty for those with dirty minds).

The novel of information that Scott read out before we left was bordering on hilarious.
What both children "need" and how to look after them IS a novel.
It was wonderful to see Scott take charge and make sure everything is understood for both kids.

Danny and Donna are such amazing friends.
With two young children of their own, they also took on ours.
I will never be able to explain the effect it had on Scott and I as parents, a married couple AND as individual people.

On Monday, Scott had a meeting with centre link (government assistance in Australia).
A special person chose to help us work through the maze of what is available to us.
She works there, so that helps.

Scott walked in to that office with a folder FULL of forms filled out (with the assistance of this friend).
It is applications for things that we had never heard about.
This angel spent time on her holidays, HERE, doing work.
We will be FOREVER grateful.

He came back out of centre link in shock.

We have had no income since I stopped working on December 6th.

From what they told him, over 2 hours, we will actually have enough money to pay the bills now.
We will not lose the house.

Scott and I do not have the financial stress that has been causing so many arguments.

So different than how we planned our life.

No one will ever understand how this house is like a hospital ward.
Needles, toileting, eating, entertainment/activities and emotional stability.

But as I said to Scott Sunday night......
"We are good people. We have been handed these two children for a reason".

Amazing life, no matter what.
Amazing life.
We can do this.

xxx

The ladder

Big Day.

Today began with swimming at Nana and Poppy's.
Amelia decided that she wanted to get out of the pool (very hard when she is 60 odd kg) walk around to the side of the pool and JUMP in.
This is huge......not only on my back!
She is facing her fears.
A task that was so very simple 2 years ago is now something that scares her.
Due to her physical skills, once she initially sinks, it is panic stations when she cannot resurface again.
After much encouragement and plans about "how to handle this".....
SHE DID IT !!!!!

6 times later and I took refuge in the Volteren anti- inflammatory at home !!

After 2 hours of swimming, her legs no longer worked outside of the pool.
But Amelia was happy.
That is what is important.

We had to return for a meeting with one of our "guru" specialists.
Amelia's Private OT.
Someone that has helped us in so many ways.
She reads this blog, when she wants to know how we are traveling, and offers assistance when the time is right.

Today's meeting centred around respite care (within the home and out).
We discussed our "comfortability" with strangers caring for Amelia and they explained how "friends" and people we know could assist.
They also discussed funding options

We talked about disability art classes (Amelia's passion).
Other organisations were mentioned for camps and activity programs.
There was a discussion about sibling support and assistance (Tom).
There was also talk about the fact that we have no income (use our Superannuation).

In there somewhere we talked about a new bed and dining table chair for Amelia, so she does not fall off the chair at meal times.

Centrelink and Physio "guru's" are occuring in the next week.

I am climbing that ladder to be positive again.

One life people.
One life.
Wallow in self pity and then take the bull by the horns.

xxx

xxx