A conversation a few months ago between Amelia and myself....
"I want to go on a camp" said Amelia.
"Ok. But what are you thinking because your school does not do it for a few years" I answered.
"Some of my friends go. They go on day trips during school holidays too" she says.
" I will look into it" I said.
At the time I was thinking " absolutely no way", "this will NOT be happening" and "treat this delicately with Amelia".
My own dad came around and after being told the details from Amelia stated, "You won't be going to that sweetie".
(he knows what we are like!)
Whenever you have a child with a disability all the support networks speak about is "respite".
Respite, respite, respite.
We do not need respite.
Scott and I do not need strangers to look after our child while we have "timeout" or time with Tom.
Scott and I cope beautifully giving each other "timeout".
We have my dad. That is enough "respite".
There is an organisation that offers quality time for disabled children....
It is not just respite for the parents.
Amelia attended her first camp last weekend with this organisation.
It was not our decision.
It was hers.
After attending 2 day trips last school holidays and assessing whether it was "suitable", Amelia pushed and pushed to go on a camp.
She is "growing up".
After much thought, I realised that she needed time away from us.
She needed time away like other children her age.
She needed to gloat and talk about her "adventure".
My concern is and has always been that "no one can care for her like we do".
Amelia cannot do anything for herself.
She has many fears and worries.
WILL these people look after these attributes of her personality?
Will they shower and toilet her appropriately?
Will they make sure she sleeps soundly?
Amelia is OUR child and we will look after her appropriately.
Will they ?
Amelia went and loved it.
There was one complaint about "sleep time".
It is something we will be following up.
It is something we will be ensuring before she goes on any more camps.
Amelia wants to attend more.
That has to be a positive result........surely.
She had a make-up beauty party, made cookies and went to an animal sanctuary.
Amelia spent time away from us and our house.
She connected with the "carers".
It has been a huge learning curve for all of us.
Tom's school report came home recently.
He is "above average" in 80% of his subject areas.
In most areas he is 6-12 months in front with his learning.
THAT IS HUGE.
Tom is also having nightmares.
At approximately 1am he wakes up and thinks that "aliens" are coming to get him.
It is very upsetting, but also very disrupting to the household sleep routine.
We are all very tired.
Scott suggested going on the Internet and finding how to "power" one of his teddies to look after him.
"Yeah. Like that is going to work!" he responded.
I laughed at Scott thinking Tom would believe that but also laughed at the irony of that fact that "aliens" are coming to get him.
Finally the next interesting news in our household..
I have to endure a colonoscopy next week.
In lamens terms that is "a camera up your bum".
I have begun bleeding from an area where the only substances should be brown
(or blue if you have eaten cake with blue icing - take that from experience!).
After an investigation (no description necessary) it has been decided further investigation is needed.
Most people would not be concerned BUT we are talking about US.
The people who have EVERYTHING happen to them.
Some of you are following my beautiful friend and her battle after bleeding from the bowel.
Why would WE be any different?
We have great luck in this house......NOT.
Will wait until next week
There is that small (MASSIVE) worry............
Amelia is "freaked out" by my procedure next week.
I decided to try and alleviate the worry by getting her to imagine something.
You MAY find it funny.....
Imagine the people that are doing the procedure next week.
Imagine saying in Kindergarten.....
"WHEN I GROW UP" ........
"I am going to put a camera up peoples bums and look at their poo".
Enjoy your dinner everyone.