Happy Amelia

This afternoon I asked Amelia a question that I regularly ask.......

"How are you ?"

Immediately the answer shocked me.
I did not realise how much I do not hear it.

She said "good".

Recently the answer has been sad.
Complaining, depressed and generally "not good".

This whole week she has been smiling, laughing and saying insanely clever "one liners".

We are all loving it, even people that do not see her regularly are noticing the difference.

From the minute she arose this morning she did not want to go to mainstream school (her 1 day !).
But she has had a happy day and may even attempt the two days she is meant to attend next week.

YESTERDAY - Had a meeting with Amelia's OT. We discussed all of the equipment Amelia needs right now and what she will need in the near future.
Things like shower chairs, a hoist to get into the bath, computer software, communication devices, cutlery, motorised wheelchair (and then car conversion), handles on toilets, ramps and handrails etc etc etc.

Amelia and I also drove to a "showroom" in Mornington.
I received a quote for $2400.
This was for everything that I saw that we needed right now.
I never knew any of these products existed.

 Overall VERY OVERWHELMING.

So I had a 3 drinks last night and fell asleep at 7:20pm.
Woke up at 6:30am this morning.
I think that I totally blacked out and shut down.

We will be attending an appointment soon to look at motorised wheelchairs.

The irony ????
Amelia LOVES the special school.
LOVES the bus that comes and picks her up.
LOVES that she needs a motorised wheelchair.

She is genuinely excited about it all.

Me?

I am torn.
Sad that she needs all of these things
BUT
so, so, so happy because I have not seen her this happy in a while.

There is so much more to talk about like NEW RESEARCH and TRIALS and TOM but I am too tired right now.

So I will leave you with something Amelia said yesterday.
We had just got home from taking Tom to basketball training.
"While I get tea ready, what would you like to do or play?" I asked.
She said in a theatrical voice
"Take me to your leader".
"What?" I asked laughing.
"The Computer.......I want to play games".

Maybe it was a "had to be there" but I found it very witty.

Will speak soon.

Amanda

xxx

Lots and Lots xxx

Today has been a really good day.

Enjoy it while you can people....

I am only now realising that I feed off my children's energy.
If they are happy, I am happy.
If they are sad, I am stressed.
If they are angry, I am stressed.
If they are stressed, I AM STRESSED.

Yesterday Amelia brought tears to my neighbour's eyes as she approached the special school bus.
It was the first day of this bus picking her up and dropping her home.
Her choice, not mine.

Today she ran out the door (crashing her walker into walls and doors) and attempted to run up our very steep driveway.
Amelia was giggling and smiling as she tried to run.
So today she brought happy tears to my eyes.

The staff on the bus are hilarious and full of fun.
What a wonderful start to the day for all of us.

REWIND.............
Last Thursday we left for Mildura.
We managed to do 1300 km in four days !!

Scott's Gran turned 90 on the Saturday and we had a great time catching up with Scott's cousins and there young families.

All the Great- Grandchildren with Gran.

Gran's children and grandchildren.

No matter where you were in Victoria last weekend, there was a MASSIVE heatwave.
Thank goodness for Kylie's pool.

Queen Amelia and Princess Caitlyn (our gorgeous niece).

Tom on "the tube" in the Murray River.
Amelia also SHOCKED us all and had a turn too!!!!
Unfortunately I cannot show you those photo's.


There is A LOT going on at the moment concerning new equipment for Amelia.
Tomorrow I am having a meeting with our OT to try and write down a list.
Everyone is telling me to " look at this " , "research that" and "you need to order".
So as I leave to google electric wheelchairs, car conversions, cutlery and shower chairs, I would like to tell you a story.

For the privacy of the children involved, no names will be used........

Once upon a time a little girl started at a Special School.
She made friends very quickly and spoke of them often.

Then one day the little girl came home and kept talking about one boy in her class.
The mother of the little boy said he constantly talks about this little girl too.

He told his mum that he thinks she is pretty.

The little girls mummy thinks this is so cute.
They like each other.
The little girls daddy is not so sure.

The mummy of the little girl already adores this boy so she is pleased that they are establishing a friendship.

The next day the mummy discovers that the boy is almost 12 years old.
This little girl is only 8.

Oh dear.
What will the little girls daddy think now ??!!

The little girls mummy had to go into the classroom today and this gorgeous boy asked for the little girl's phone number.
The mummy cannot wait to tell the daddy about this.

And we end the story today with after the little girl came home from her new special school and her mummy asked about "what she did at playtime?"

The little girl answered innocently "WE played mummy's and daddy's".

Mummy could not contain herself anymore.
She fell to the ground in hysterical laughter.
Mummy was going to need to film the daddy's facial expressions tonight.

Who was the dad?
The boy.

Who was the mum?
A different little girl.

"What were you then?" the mummy asked the little girl.

"THE STEPMUM !!!!!!"


xxx

A light is appearing at the end of the tunnel.

There is nothing as beautiful as seeing your children happy, excited and proud of themselves.
I have been fortunate enough to witness this in both my children over the last 24 hours.

Tom went up on stage at assembly yesterday to receive his "energy ranger" badge for his class.

I will always remember him seeing me, while still on stage.
He pointed to the badge and gave me a thumbs up with a big smile !!

Amelia arrived at special school today and was bouncing with excitement.
She will be using a motorised wheelchair for the first time.
The school owns 4 and Amelia gets to try one out today.

Our decision on Amelia's schooling was led by Amelia herself.

She will attend special school on Mondays, Tuesdays and Wednesdays.
She will attend mainstream school on Thursdays and Fridays.

If she is too tired on ANY of those days I will be keeping her home with me.

We are all very happy with this final decision and are eager to see how it goes.

I am very busy preparing to go away so I will speak about Amelia's Project Meeting and our night on August 4th 2012 next week.

I would like to leave you with something Tom apparently said in class yesterday.
(For Tom's personality please imagine "matter of fact", sighing and arm gestures).

While Tom's teacher was trying to gain the children's attention in class Tom apparently said.......

"Why be a prep teacher? 
The other grades would be better. 
You can't get anyone to listen in prep."


xxx

Done and dusted

Amelia has struggled to sleep this weekend.

She ALWAYS sleeps well.

Amelia's dermatitis on her hands is the worst it has ever been.

We had cleared it up over January.

Stress............
She is stressed.

At 7am this morning she asked to climb into bed with me.

"I want to do Mainstream school on Friday only. I want Thursdays off to rest. I want to go to the special school on Mondays, Tuesdays and Wednesdays".

Today I have made phone calls and been business like in my decision making.
To be emotionally involved is too difficult.

I cannot say what was discussed and what was involved , on this blog,  due to other parties being involved, but I am happy with the final decision that I have made (with total support and agreement from Scott).

I will explain at tonight's first Amelia's Project Meeting.

xxx

The Calm after the Storm.

Yesterday I wrote a very emotional and honest blog.
At the time I was at the lowest point I have been for a long time.
Today is a new day and a new perspective................

Yesterday morning I let the flood gates open.

I have been feeling the tears waiting since before we went to Queensland but have been unable to get them to flow.

Yesterday they came in a tidal wave.

If anyone had of come to my house they would have admitted me to hospital.
For 60 minutes I cried and cried and cried.

At the time I did not know how to stop.
But I did.

Today I feel cleansed.
I feel like all of the emotion has gone.

I realise the adjustment of a new year, (a very different year), Amelia being sad AND grumpy and Little Tom being forced to take on so much responsibility has taken it's toll on me.
The weight of what is going to occur at the AT clinic next month in Brisbane, travelling to Mildura next week and assisting with the Brashat Gala this year has all caught up.

My stress levels exploded.

Thank you to all my beautiful friends, far and wide, that helped me get through it.

Amelia said last night ......
"I want to leave my mainstream school BUT I do not want to leave my friends".
She is now happily sitting with that thought.

Tom HAS BEEN my guiding light through the last two weeks.
His enthusiasm, maturity and common sense makes me laugh, admire and adore his overall personality.

From the moment Tom leaves his classroom he begins telling me about his day.
He is so animated, full of facial expressions and actions, that it can only make you laugh.

So now that the negativity has left my body (I think!) I am going to begin focusing on the positives again.

My beautiful family needs me happy and calm.
That is my aim for this week.

xxx

What to do......

One day I will learn.
When you emotionally post a statement on Facebook, your friends worry.
The messages, phone calls and home visits were appreciated.
I am lucky to have so many friends that care about us so much.

The "wine fairy" even made an appearance again.

I am now officially burnt out.
I am so emotionally drained and exhausted.
At least the tears have started flowing so I can now release some of this weight I feel upon my shoulders.

School 2012 was meant to be "time for me".
Instead I find myself stressing over both children.
Instead I have two children that have HUGE things happening in their lives.
There is also "other" things happening around me where I am needed.

Amelia broke down yesterday and said
"I want to go to the special school full time".

I asked her the reasons why and she said......
"It is more fun".
"It is nice and quiet".
"The other one is boring. I do not know what to do there".
"I can play with people at playtime".

Absolutely broke my heart.

Here is this little girl that I only want happiness for and she is explaining to me how "out of place" she feels at her mainstream school.
How she has just found a place where she feels comfortable and belongs.

Sounds like the decision is easy then, doesn't it?
I do not think so.

Once she moves, that is it.
No moving back.

You cannot make such a BIG decision based on a bad day or a "whim".
It has to be well thought about and decided it is 100% definate.

I have absolutely no issues with her attending special school full time.
I am worried about all of the friends she will be leaving behind.
And she has many.
I have explained this, named them, pointed them out .......

But I think she has decided.

Now I am taking her to a place where she feels so ...... different.

I believe that she feels "bored" because she is unable to keep up or understand the work in class.
She said "I do not know what to do in the classroom".

When I see Amelia with her friends and favorite staff members at mainstream she has a massive smile on her face.

She would not see them anymore.
She would be catching a bus to and from school, straight from our front door.
(This is something she is very eager to do).

I only want to do what is right by Amelia.
I want her to feel comfortable and happy everyday.
I never want her to feel "different" if I can help it.

She may only have a short time with us so I need to make it the best possible time it can be.



And then there is Tom.

The responsibility and independence put on this little 5 year old so soon after starting school is also heartbreaking.

I am a mother who likes to see my child walk into class at the beginning of the day and be there waiting when he comes out.

The drop off / pick up zone has never been for us.

But at least he is extremely eager to get out of the car and make his own way to class.
I am not.

But yesterday when Amelia was crying and begging not to go to mainstream, Tom looked at her and said "but I am there. Please don't leave me".

And the tears keep flowing.

xxx

Today she is NOT mine !!!

Before I begin my story about today's cringe-worthy moment, I would like to acknowledge something that I forgot in yesterdays blog........

Amelia will also be presented with an Energy Monitor badge at assembly.
After our excitement about Tom, Amelia announced she has also been chosen for her class.
I confirmed this with a reliable source.

Amelia is never given a role or responsibility such as this.
Her self esteem and overall happiness have definately received a boost with this decision.
And sometimes we all need to be "in charge" of something to feel like we belong.

NOW TODAY.........

Amelia and I received a very distinguished Invitation to have morning tea with the "Myer" family.
Yes, that is the same Myer family that developed the well known department store.
It was Mr Sydney Bails Myer and Mrs Sarah Myer.

The charity that had supplied Amelia's laptop computer had previously received the funding from this family.

Beyond Disability, the before mentioned charity, offers assistance to people of any age.
They specialize in technology and equipment to enhance communication.

They have one specific program to assist children still at school, "Wheelie Kids".

Amelia ONLY uses her computer now at school.
We no longer encourage her to write because it is just too difficult.
I would prefer that she began learning about other forms of communication.
So.......all school work is now done on a computer.

The Myer family have kindly supplied this opportunity.

The Property in Red Hill was devine.
Beautiful.

They also have a property in Melbourne CBD.

Mr Myer came over to me, pulled up a chair and began a conversation.
Amelia up to this point had been complaining that she was "bored".
When attempts were made to include Amelia IN the conversation she ignored the speaker.
THEN while sitting in a chair, pulled her walker over, PUT her feet up on it, THREW her head back and virtually sighed.
I could vitually see her rolling her eyes.

At this point I was cringing.
Here was a very wealthy 80+ year old man attempting to speak to Amelia and she was being incredibly rude.

The behaviour continued with anyone who tried to speak to her.

The only time she was "herself" was when we were taken out to see the stunning horses and 5 foals.

Whenever I tried to address this behaviour with her, (whispering), she ignored me !!

These people do not "know" Amelia.
They probably believe this is normal behaviour and linked to her disability.

But I DO know.

The Amelia that charms, inspires and impresses everybody was not with me today.

Some other child was.

When we were leaving I asked her why she had behaved so rudely in front of those people.

Her answer made me realise how alert she can be.

"You said that I am not allowed to talk to strangers" she said smuggly.

At least she has still got spark.......................................

Mr and Mrs Myer with Miss Attitude.

One of the beautiful foals (please ignore Amelia's "Madonna" gloves that she insisted on wearing!).

And feeding a foal.



xxx