Friday, 5 October 2012

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.


Monday, 1 October 2012

Evaluating my "POINTS"

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".

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.