Photo's !!!!

 

After writing my latest update yesterday, I forgot to include all of the photo's I had chosen !!!!

 

The first one is of Scott and I, sitting in a taxi, on our way our for a "grown ups" dinner and drinks.

For the first time in approximately 4 years, Scott and I stayed in the city and the kids stayed with Nana and Poppy.
Here we are having breakfast !

As part of the "huge overhaul" of our house, Scott and I were working hard outside cleaning up the backyard.
This is how the kids entertained themselves !!!!!!

This beautiful, happy face (and laughter) is a regular occurance now.
Reminds us how very special every single second with this child is......

This is Amelia and Nutter ......(sorry Honey !).
She is much bigger than this now!
She was originally bought as a companion for Amelia, but I would say in the last 2 months she is definately a best friend for Tom.
Their energy levels, personalities and love of life are perfectly matched.
Every night after school, Tom cannot wait to go outside and play with her.

Our beautiful Amelia after the gorgeous Jade did her hair.

Amelia has decided to "create" an area outside.
Here she is at the design process (something she learnt at special school).
It already has butterflies hanging and now we need to purchase comfortable chairs and a table.
The area is under a gorgeous tree.

And here is Amelia's new electric wheelchair.
The fantastic "license plates" are courtesy of Nikki and Belinda.

Thank you for all the extremely kind messages about the blog written below.
I enjoy sharing the highs and the lows with you all.

xxx

Hello !

Hello.
Where do I possibly begin?
It has been 5 weeks since my last confession ....... sorry, blog ...... and so much has happened.

I will begin with beautiful Amelia.
She has changed.
Like really, really changed.
Since she has settled "full time" into the special school, she is so happy now.
Like really, really happy.
She declines ALL days off school.
And she laughs uncontrollably ALL the time.
Quite often we look at her like she has "lost the plot" and this only makes her laugh more!
The transformation has been MASSIVE.
Amelia can still be grumpy, moody and sad but breaks out of it a lot quicker than in the last 2 years.
We have also changed the way we handle these situations.
She has been told to "move on" on numerous occasions.
No more wrapping her in cotton wool.

But the laughing, the wicked sense of humour and the discussions (from her) about happy times years ago has been mind blowing.
She is also appreciating happy times NOW.

And Tom.........
Well he astounds us everyday with his vocabulary, reading, writing and number capability.
He loves all of the above and enthusiastically "practices" it all constantly.
His social skills and general behaviour have improved beyond belief.
Tom has matured greatly and for someone who is only 6 years old we are so very proud.
He still has his "moments", but they are nothing compared to what they used to be.

Scott is really good.
He has lost a massive amount of weight, has SO much more energy and is definately appreciating every minute of every day.

And finally ...... ME.
A lot of soul searching in the last few months.
Why defining all of the positives and negatives in MY life, I have discovered so very much.
Instead of constantly complaining about my weight, I decided to do something about it.
In the last 6 weeks, I have lost a total of 12 kgs.
I participate in personal training, eat healthy and have changed many of my attitudes to "life".
Because of these changes it means I sleep better, wake up easier, have no more headaches and never feel "sluggish".
It was a massive commitment though.
I only eat salad, vegies and 100gm of meat/seafood.
NO caffeine, carbs or sugar.
There have been times when I "caved" but once I feel the after affects, I return immediately.
I plan to lose a lot more weight.

My soul searching has recently meant that I have also lost some friendships.

I am not ashamed to admit that I hit "rock bottom" emotionally when it happened.
I have never lost friends, especially never in a nasty way.
It is an episode that will stay with me forever and I will always still hold those people close to my heart.
But as the poem goes, maybe those friends came into my life for a reason or a season.......

Overall, we are happy.
Our house has been given a mass overhall.
I will be starting a new job soon.
Amelia is extremely content.
Tom is very well adjusted.
Scott is appreciating life.
And I am grateful.
I am grateful for grandparents, siblings, friends and for all the people that surround us and make every minute of every single day special.

Promise to write more often from now on.

xxx

Points Finale !!!! (Thank Goodness)

I am now bored with my "points"and will now be presenting the GRAND FINALE !!!!

It appears all "old news" to me now and I want to move on !!!!!

Scott has travelled through a more intense realisation of our current situation recently.
He is fine and not in the foetel position in the corner BUT the sadness of Amelia's deterioration has overwhelmed him on a few occasions recently.

We all have moments of realisation and they really hurt, but also get to the end of the tunnel and find sunlight....... until the next tunnel.

We have all really enjoyed the school holidays that have just ended.
Scott was working but enjoyed hearing the stories of our day (and happiness) when he came home.

And finally, Amelia's Project.
After an incredibly successful 20 months, Amelia's Project no longer has a Committee.

After creating a group so powerful and mind blowing, I told the Committee I wanted it to end now.

My energy needs to focus on Amelia and my family now.

We will be eternally thankful to Jemimah, Michelle, Cindy, Belinda and Donna.
They all worked so very hard to help our daughter, and effectively us, and there is never going to be a way to thank them enough.

Belinda and Donna now oversee the Amelia's Project bank account and I give them any receipts we have accumulated.

At this stage there will be no more active fundraising for Amelia's Project.

In the future this may change, but for now we are so humbled by what was achieved and the love and friendship that surrounded us over an incredible 20 months.

I am very happy to say that THIS blog and the Amelia's Project page on facebook will continue.
I need my therapy through writing and respect your interest in hearing of our good and bad days.

xxx

Continuing the "Points"

Amelia has had 2 dangerous falls recently after just waking up.
The ability to get to our bedroom to assist her with the morning toilet stop is no longer safe.

We were advised to purchase a "monitor" from Toys'r'us that allows for two way communication.
It also has a camera on Amelia's end and a TV screen on our end.
Excellent for $160.

As well as being a "fun toy" for the kids it is also effective in making sure she does not get up alone.

A few weeks ago we had a fun wheelchair party to celebrate the arrival of the new wheelchair and the new car.
Some of our closest friends attended with their children.
Amelia admitted at the end of the night that she struggled to watch all of the children "playing".
Even though Scott and I felt like we had failed we understood that we needed to take this knowledge and remember it for the future.

Recently I had a discussion with Amelia about what to do when we get together with other people.
I explained that "she may have A-T but it does not mean she cannot find her own fun. The fact that she has it, is what it is, (harsh I know) and she needs to work with it so that she prepares and and can think up ideas for her own fun.
Take the dog to the park and be in charge of it.
Play chasey on the chair.
Tow kids on skateboards and rollerskates.
Get out a game that can be played at the table.
etc  etc etc etc.
Amelia (and us) need to think of ideas of activites she can participate in.
Scott and I are taking all the blame after so many situations seem to fail.
I want to put some responsibility back on her now.
Stopping and smelling the roses can open up so many doorways for happiness.

Now while moving down my points (about 3 entries ago) I would like to talk about Tom.
These holidays I have seem him hand feeding Amelia her toast because she has become too tired to do it herself (I was in the kitchen packing the dishwasher).
His patience has recently excelled (towards Amelia only) and nothing appears too annoying or difficult to help her with.
Tom is also realising that Amelia is someone he can still play with.
He has also realised that she laughs at his jokes !!!

Tom has an amazing ability to calculate number.
The adding up and subtracting he is able to achieve in his head is mind blowing.
He is also teaching himself the "times tables" ??!!
Amelia, Tom and I went to the movies today.
 He had a movie voucher to the value of $12.
Straight away he said
"You won't need to pay $36 now mum, just $24".
At the bakery when 2 loaves of bread came to $7.40, he saw Scott give a $10 note.
"You will get $2.60 change dad" he said before it had been calculated by the register.

Anyway as another School Holidays comes to an end, Scott and I are going to watch some favorite TV shows.

Have a good weekend everyone.

xxx

Evaluating my "POINTS"

Hello.
I cannot sleep, so I thought I would begin explaining my "points" from two entries ago!

I will begin with Amelia.
She cannot walk now unassisted, if she does she will always fall.
So Scott and I prefer to support her from behind, holding her underneath her arms.
If we just hold one side she seems to lose her balance and do a 180 degree fall.

I keep thinking she is grumpy in the new "motorised wheelchair".
The other day she informed me it is her "concentrating face"!

Amelia is either sad or grumpy A LOT when at home now.
I like hearing that she is not outside the home (ie school), well as far as I know anyway.

Amelia's "attitude" is also changing.
With frustration, anger and sadness being the new behaviours of late, we can also add attitude.

I have watched her kick Tom when he is walking past and drive her chair over his chalk drawing on the ground outside.
Both times this has followed with a small giggle while still looking straight ahead.

Recently while Tom was insisting she pass HIS motorised wheelchair test, she ran into our hallway wall for the upteenth time.
"Shit" I heard her say.
We then had a discussion about NEVER saying that word again.
That night as I was telling Scott about the incident, in front of Amelia,
she said quietly "Oh get over it".
Hmmmmmmm.

We are having lots of discussions about ways Amelia can communicate to anyone around her because her speech is rapidly diminishing.

There was obviously nothing wrong with her speech above was there ??!!!

We are also talking to Amelia about "Looking on the bright side of life", having fun, enjoying the sunshine and looking for the positives in general.

This anger and sadness is wearing Scott and I down greatly.

We feel like we are failing this responsibilty we have been given......

To give Amelia an amazing life.

Everything (well almost everything) we plan or organise for her ends up being a failure this year.
And I mean a failure to her, no one else.

We have been known in certain situations, that require no upset,
 to say to her "Oh get over it"..................................

Oh Damn, that is where she got it from.

Will continue the "points" another day.

xxx

Endota Spa

I am so incredibly excited right now, I think I will burst !!!!

(WARNING : The Me, Myself and I will continue during this entry!).

Endota Spa has offered ME a position at their Head Office.

It appears that they are one of those companies that is all about making their employees happy and logically, we all know, that means creating better profits and reputation.

The business name Google are known world-wide for making sure their employees set their own job description and work using only their strengths and positive energy.

Yesterday I was asked to request my hours, time unavailable and list my strengths.
Anyone that knows me knows I am not very good at promoting myself, so I named my "Degree in Early Childhood" and the fact that I am a "neat freak".

All of a sudden I am now setting up a "child care area" for the employee's children and supervising it DURING school hours and not school holidays.
I will also be assisting the receptionist with administration and "busy" times of year.
My position will commence around December 2012.

I AM SO EXCITED !!!

The affect this has had on my self esteem is unbelieveable.
Somebody actually wants ME !!!!

I do not care about the money.
I am 100% doing this for my sanity.

Thank you so much to everyone for all the supportive messages and encouragement after yesterdays entry. You have no idea how much it helped me stop shaking !!

Our whole house is excited about what happened only yesterday.

Today I have spent the afternoon writing a "Business Proposal" (does that sound business like ??!!) of ideas and suggestions for the new children's area.

After Amelia and Tom returned from school, I thought that I would get their input on what I had written.
I believe the transition has to be handled properly so that our whole family adapts smoothly.
As I read my ideas of room planning etc to the kids, I had to stop myself laughing.
Amelia told me I will need "ramps" incase there are any disabled children (and so she can visit!).
Tom said that he will tell his teacher that he "will need some days off so I can go and help mum supervise the children". He also said "I will teach them how to read and write".

So if you could all excuse me now, I need to go and list more of my strengths and finish my "business proposal" !!

Have a look at the Endota Spa website below too.

http://www.endotadayspa.com.au/home

xxx

Me and I

In the last few weeks I have encountered people that I do not normally see.
Whether it is because Tom is at school full time now or lack of contact it is always a pleasure to see these people again.
It is interesting when the first thing they say is
"You haven't written a blog for ages".
Interesting, because I do not realise how much people enjoy hearing about the kids, Amelia's A-T and my "warped" philosophy on life.
Sometimes I get messages asking "Is everything ok?" from all over the world.
People seem to feel a connection with our family and that is very humbling.
I write when I need to.
It can be for a positive reason or a negative.

Because I have taken a break from writing recently there are many things that I can write about.

I will list in point form what I would like to discuss over the coming days before I focus on todays "Topic" !!!

# Amelia - walking, wheelchair, car, attitude, swearing, bad fall and wheelchair party.
# Tom - Traffic lights, behaviour, footy, number and THE chop bone.
# Scott - realisation of everything Amelia and job insecurity.
# Amelia's Project - a few admin changes and plans for the future.

Some interesting discussions to look forward to.
(if it is easier to be emailed a blog once it is written just register to be a member done the right hand side of this blog. Then you do not miss anything !!!!! ).

Todays Topic - Amanda (that is me).

I am going for a job interview today.
To say I am nervous is an understatement.

I have not applied for it, a gorgeous girl from the last 20 year High School Reunion (I have been to 2 this year!) asked me to consider working for her.
I cannot tell you where BUT the business could be considered "famous"in Australia.

I thought about it for 48 hours and thought there is no harm in listening to what they are suggesting.

So now I am incredibly excited ....... and nervous.

I am excited at the thought of not constantly doing washloads, cleaning the house, cooking and packing the dishwasher.
I am excited about actually getting to leave the house and having another role.

I am not looking into it for the money, (even though it would be a godsend), I am considering it for my sanity.

The main obstacle will obviously be Amelia.
Sick days, curriculum days and school holidays would be "non working" days.

If nothing comes of it I am still very excited.
I have discovered that I want more from my "week" and that is something I can continue searching for.

So as I sign off from my "ME" and "I" blog, I say thank you so much for having an interest in our family and supporting us in trying to create an amazing life for not only Amelia, but for everyone.

Now to google the address and find something to wear !!!!!

xxx