She's my baby .....

Not too much to say today. Had an lovely drive with Ellie tonight (only because she was having so much trouble sleeping). I bundled her up in the car in the hope it would put her to sleep, instead it just gave her more to talk about.

First she was saying "stars" and pointing them out and then she would say "happy stars!" Then she said "happy kids" and "happy Mum" and "happy Lachie".

She then mentioned the moon and I asked her what colour it was - "yellow Mum" she insisted. 

Which is pretty good I think and she must have thought so too because she gave her self a round of applause with a 'YAAAYYYYY' while clapping.

Very cute.

Warm marble .....

I don't know if I should write about this or not, because for some reason it makes me feel a little awkward. But hey - this is all about experiences and I had an interesting morning which involved taking the kids with me to the cemetery as I tidied up my mother's grave. Something I have never done before. Of course I would remove old flowers and refill the little water pot things, but not actually taken water and a brush to it. 

It's really amazing how time leaves it's mark on things. There was dirt and dust and little bits of moss growing in cracks. It was all starting to look shabby and would depress me even more when I went out there. It was starting to look like it (she) was forgotten and like no one cared. Anyhow, I scrubbed away and the kids went crazy climbing on things. The kids love it when we go to the cemetery - it's kind of macabre really. They just want to climb on graves and even lay down face first on the marble that is warm from the sun. Luckily my mums grave is in quite a secluded and isolated spot so it was just us. Nothing was broken, and they mean no disrespect at all. 

Once I had finished it all looked so much better.  It was almost like wiping away all the years since she has been gone and it all looked brand new and in a strange way it felt good - like I had done something for her.

Away and home .....

Feel like I badly need to get out of here and get away at the moment.
To get another perspective, a little space, and a different view.
We are coming up to a trip to Brisbane at the end of April. Maybe that will help. 
It will be really nice to spend some time with my Dad and my brother (see below).

My brother Rowan

 

& my Dad

Don't they look alike?? 

They can't kill me about the photos - because they don't know about my blog. :-) 
- Special thanks to Mr. Potato head for lending us his glasses. -

Insomnia

This last week or so I seem to have a bad case of insomnia.
To be honest before this for a long time I would just about fall asleep as soon as my head hits the pillow probably due to just being too tired to care with thoughts of anything else.


Last night I discovered that listening to your IPOD while in bed does not help you to fall asleep. I must have shuffled through hundreds of songs. Some I would listen to in their entirety - some I would pass straight over and move on to the next song, others I would turn up louder.


I thought this might distract me, or help my mind to get heavy and to wander - instead I found myself blinking opened eyed into the darkness at 3 in the morning mouthing the lyrics to songs.


Here's to tonight - I'll have to sleep. I'm totally buggered.
If not I guess there is always 3 am silent karaoke for entertainment.

The chaos ......

We went to the Begonia Festival on the weekend. I thought I would take the kids to see the parade and the animals.

It takes what feels like a little bit of courage on my part - to take the kids on my own out to new things - leaving the car far behind us. I usually like to have it quite close by to bail to in case Bugs gets upset about something. It never used to be so bad as I could just bundle up this toddler and carry him to the car, but these days he is BIG and strong and if he doesn't want to move - he wont. Anyhow, I thought I'd try as I don't believe we should stay hidden in the house, or in 'safe' places all the time. It's not healthy for me, or the kids. If big Loch is with us its entirely a different story - it's that second set of hands to help diffuse the situation or watch one kid while we deal with the other, that makes all the difference. It also feels like a united front when we are together - I feel confident going anywhere.

I've been thinking a lot recently about Bug's behaviour. Professionals have told me that there is always a reason for a behaviour. Maybe its frustration, hunger, pain, wanting something, or the behaviour meets Bug's complex sensory needs.  Sometimes I must sound like I think Bugs is a terrible child who is difficult all the time and drives me nuts,  sometimes he is easy and his behaviour is wonderful, at other times it's so difficult it's a complete nightmare - the thing is though it's not him - it's 'IT'.

It is autism.

It must be easy for people to look at my son as see a badly behaved child. He can be hyperactive, often does the opposite of what you tell him and he's occasionally angry and aggressive. He is messy, he has very little social graces and absolutely no modesty when it comes to anything.

 The thing is that I know that all of this outside stuff, all the craziness, is for a reason.

He lives his life being bombarded by noise, light and touch. He can't switch off from one noise to the next it all comes at him at once. Lights might be bright and changing and blinking and even the feeling of a hat might irritate to the core. Life must be such a different experience, and it must also be scary. Add to that the fact that you can't talk, explain, or ask about anything - it's amazing he gets up in the morning, goes to school and functions as he does. If I had that going on I think I'd probably just hide under my bed in the dark and stay there.

As this isn't my daily experience, and never has been, I can't quite understand. I can understand the feeling when the TV is too loud and I'm trying to concentrate, or when you walk into a room and the lights are really bright. I know some feelings are horrible, like tin foil against fillings and fingernails down a blackboard - is this the kind of stuff he feels all the time?

As an outsider looking at him, it is easy to just see the chaos that can be my son. It's amazing how many people are close to us but don't even really know what autism is or how it affects someone - they just know what it looks like - and in my sons case it looks like an out of control kid. I would love it if people would actually learn what autism is instead of assume they know. Perhaps they would understand a little better why autism can equal behavioural problems.

I feel proud when I think of everything Bugs deals with on a day to day basis.  When I really think about how he must feel and how he is affected daily I think he is no longer unruly, but amazing and special. Despite all that he comes across he still is a loving kid who constantly holds his arms out for hugs and loves any kinds of attention. He still gets up with a smile on his face and is willing to make his way in the world for another day. These are the things I need to remind myself.

He may behave badly - but there is a reason for this and it has nothing to do with who he really is on the inside.

Slipping .....

We all seem to have reached a little bit of a flat point recently. 

School holidays were hard, but not as hard as the previous year as Bug's behaviour had improved leading up to Christmas. As soon as he started back at school however this has gone down hill a bit and that gleaming precious hope of an easier time have slipped a little. I thought it might be the changes at school, and there have been some slight issues going on there, but now reports seem to be that he is having good days. 

Wish I could follow him around for the day and just see how it all goes for him.

His behaviour and frustration aren't as bad as at various times over the years, but it's just that shift where his fuse seems shorter and he seems more unhappy - it's the tension that it holds. The second guessing everything all the time that becomes hard for us all.

He seems more unhappy. He's been crying more than usual - I can't work it out with him what is wrong - he just seems frustrated. It's times like these where I worry that he is feeling as low as the rest of us. The thought is heart breaking as just like any other mother you just want to see your child happy. I worry that he feels all alone and trapped, with just his thoughts and no-one can help him.

There is no relatively permanent state with this thing. Improvements are such big deals and can give such false hopes, I can never let myself get comfortable as I know things go down and up and down and up. If I think back to when he was little I know some issues have absolutely gone for good, so I try to think of these victories. 

Feeling quite over it all at the moment - the worst thing about it is I think Bugs is over it all too.