My World.

"Words are flying out like
endless rain into a paper cup
They slither while they pass
They slip away across the universe
Pools of sorrow waves of joy
are drifting through my open mind
Possessing and caressing me

Nothings gonna change my world
Nothings gonna change my world"

(Across The Universe - The Beatles)


At the moment it is like this - exist and sleep. You could also throw work in there as well, which even though it takes a mammoth effort to organise myself for two days, is a welcome reprieve (the highlight of my working days being my lunch hour - one whole hour x 2 to myself, what joy).

On a positive note, Jasper is getting so much better about being left at creche - he didn't even cry when I left on Thursday (for the first time in ages). I'm certain it is the pictures that have made the difference and we have set up a bit of a routine where we stop on the way to buy him his 'special milk' (a chocolate up and go).

I was lying in bed last night - my usual 'worry hour' between 3am and 4am - where I torment myself with too much thinking. It occured to me that 'this is actually how my life is going to be from now on, it is never going to change, this is my world'. I think about Jasper and his behaviour - what could I have done differently, how could I change things to make life easier. It is very easy to lie there in the middle of the night realising all the things I should be doing but during the day it is a different story. I feel like I am moving in slow motion all the time. All my good intentions from the night before are of no use to me when it really matters.

I really hope a day will come when I can take it all in my stride, where my world becomes 'normal' (not as it was before autism, but where I am so used to the way things now are that I don't remember life being any different). I hope a time comes when I can help someone going through what I am going through now and being able to say "It gets better, it's not so bad" and to really believe that!

At the moment, I know I am wallowing (and I really hate that but I figure I am entitled) however I really do appreciate it when people agree with me that "yes, this is really hard". I know others mean well when they say "Oh but you wouldn't even know Jasper has autism, if anyone can handle it you can...blah, blah, blah" and they may think they are helping, but they are not. It is just what people say to make it easier for themselves. I bumped into my maternal and child health nurse recently (have not really seen her since she initially suggested getting a second opinion) and she was unaware of the outcome. When I told her Jasper has Autism she looked genuinely sad and I could tell in her eyes that she knew exactly what that meant for me (and having a child with autism herself she knows better than anyone what that means). In that instant, I felt understood by another person who has travelled the road I am travelling now. She made me feel it was okay to think that the whole thing really sucks - because it does.

Jasper had his final speech therapy session with Tamara last week and I am so sad about that (she is moving). I really feel the speech therapy has helped enormously and I now feel like a part of my support structure has been kicked out from under me. Hopefully it won't be long before we can see someone else, and in the meantime I have enough to work with I suppose. I'm just wondering though, do I wait and see if/when Tamara is replaced or do I seek out someone else, if so, who? I don't know, I am a bit confused. Up to now I have just relied on being pointed in the right direction and having these wonderful people appear (Tamara, Andrea, Rachael, Ken etc).

I have to share this snippet from our day yesterday (it is from the 'give me strength' file)!! I suppose I can laugh about it now, but at the time......geez louise...give me strength. Maybe others can relate.

Jasper: What's that noise mum?
Kristen: It's the microwave
Jasper: What?
Kristen: It's the microwave
Jasper: What?
Kristen: It's the microwave
Jasper: What?
Kristen: It's the microwave
Jasper: What?

At this point I walk over to the microwave and point to it as I say 'Microwave making noise'

Jasper: It's the microwave mum, it's the microwave.....and off he walks!

It is just this constant stream of 'words' and conversations that don't make sense that really wears me down. It is great that he is talking more but it is non stop chatter and if I engage in the conversation it is a constant stream of 'what' that nearly drives me insane. That and the constant demand for attention to play with him or get something for him.

This morning he had a massive melt down - he asked for a bowl of custard and wanted to eat it while he was sitting on the loungeroom floor, when I took it over to him he started crying and waved me away, so I put the custard on his little table. He then cried louder wanting the custard so I took it back to him and again he waved me away and wouldn't take it. This happened a couple of times more before I set the custard on his little table and said 'The custard is on your little table when you want it" and then ignored him. He cried and screamed and eventually I picked him up and put him in his cot. After he calmed down I went in to him and got him out. Then the whole thing started again? I just don't get it sometimes and I don't think he does either. I wonder how much of it is just bad behaviour that I need to be firm on or if he just can't get across what it is he wants and it is purely frustration.

A short while later he wanted his dummy (which was in his cot). I was doing the dishes, Garth was eating breakfast and he was going from one to the other badgering us to go in and get his dummy. I kept saying "Mum is washing dishes, Dad is eating, Jasper get dummy". Eventually I agreed to walk to his bedroom door with him but made him get his dummy from the cot himself. His lack of patience or ability/desire to do things for himself is non existent, and yet at other times he wants to do it himself "Jasper do it, my turn" such as wiping up a spill. I can't work it out.

What I do know is that I have to set up a more structured existence at home, with more rigid routines and lots more photos/pictures to help him see what is coming next.

He has just wacked the wall with his shovel, better go and sort out the next drama!