It is funny with my new working life, that the second I have a moment of rest, is also a moment I get to write on here!
I cancelled beautiful friends to come for a BBQ tonight because I literally am exhausted.
Any working person with children is !!
Anyway here is an update .......
* We made new friends last week.
- Amelia was invited to a party and sleepover for one of her new friends at special special.
-gorgeous child and gorgeous mum.
-we stayed at a "strangers house"....... their own personal space, so their daughter could have an "awesome 10th Birthday". Amelia and I slept in the mothers bed ! (on our our own of course!)
So happy that we have made some more NEW friends.
I can honestly say that I have never been to a party where it was a competition to see who could race around the kitchen bench the FASTEST in their electric wheelchair !!
-Biggest thing I learnt that weekend? Being a stranger learning about a child with a disability. With an open mind, you learn SO much about their capabilities AND their restrictions......especially while watching the parent.
-Just like ANYONE with Amelia....really.
* Tom is administering his own needles.
- yes you heard that correctly.
- a 7 year old is now giving himself insulin morning and night (under adult supervision).
- he even "draws" the insulin himself into the needle.
- he keeps saying poo, bum crack and wee head ALL the time.
- he declines food that he does not feel is suitable to his "levels" on a regular basis (even a Macca's breakfast?!).
* Scott is doing reading for Tom's class.
- he is about to turn 40.
- he is JUST learning where the vacumn is kept.
- he makes a wicked roast.
- he gets cross if you do not put your rubbish in the bin.
* Amelia is full of attitude.
- We all love it.
- She must be the only child in the world where the parents have to walk away and laugh about "what she just said".
- the one liners are constant.
-people are STILL astounded that she can TALK - OMG SHE IS IN A WHEELCHAIR!
- her condition is getting worse - SURPRISED? It is degenerative.
- but she still has a brain, and can think?
- OMG. Fall off my chair!
* We have had to defend both of our children recently
- due to their VERY different personalities and capabilities, do not be surprised.
- after we assess the situations ourselves (or observe the actual incident) WE WILL GO IN TO BAT.
Personally..... I have a whole new group "to defend and go in to bat for".
My Kinder group.
There are so many special needs and defenceless parents "to go in and bat for"............
This is my purpose in life.....my whole families.......