It is official.... I hate my phone..... That gorgeous little Panasonic instrument that helps me to communicate.... I hate it. Sick of constantly being on it chasing things that aren't going to get anywhere any faster. Sick of trying to find services that I am finding out very quickly are extremely expensive. The system is failing all of us and it isn't fair. Yes this is going to be a bit of a rant so if you think you might be offended then stop reading now.
I know I am not alone. After watching the article on A Current Affair last night with the Autism Forum I very much realised that I am not alone. It's not fair. I have a gorgeous little 6 year old boy that is a huge part of my world and he is suffering. So many times I feel like I have failed him and it makes me feel like absolute crap. He is 6. He is just a little boy. Due to his school lacking knowledge on how to deal with him he now has the DANGER tag on him. When I did the workshops last week I learned so much about how to deal with his behaviour and it was amazing. It did cost me money but I would be willing to do anything to help him as any parent would with their child. If I hear "he's just being a naughty boy" one more time out of someone at his school I'm going to explode. He doesn't understand emotions or feelings and it brings me to tears knowing he doesn't even know what makes him happy because he doesn't understand the word. This is something a psychologist that we are seeing is helping him with but for a price. $220 for a 1 hour session. That's $3.66 per minute. By god it's worth it but at the moment we have to wait for Pat to return to work out at sea so Callum can go to another session. I can't pull that much money out of my arse every fortnight.
Why is our government not helping us? This diagnosis has been around since 1943 so why are we all still struggling so bad. 1 out of 110 people in Australia are on the spectrum and that is just the ones that have been officially diagnosed. Why has everything stopped since Callum started mainstream school fulltime? When he was still doing 2 days at special school, he got session blocks of speech therapy and occupational therapy. Now he gets nothing because he is at a mainstream school fulltime. So what because he's at school fulltime he's cured and doesn't need any of this anymore? What a load of crap (actually that is one of the nicer words I choose to use). He barely talked until he was 4 years old. Of course he is still going to need speech therapy. Ahh but we can still have it for a price. Occupational therapy. His main trigger is writing and cutting at school (along with the other 90% of kids with Autism). He needs help strengthening the muscles in his wrist hence the OT. Both of these services I was getting last year have stopped. Shit he must be cured.
Trying to get money out of DSQ for all of this is hard to. Sure I need a break. A one way ticket to Hawaii looks really good some days but in reality all I want to do is help my son. When his paediatrician can't even give me the correct terminology on his diagnosis sheet and then stuffs me around trying to get the right ones, it's days like that I wish someone would wave a magic wand and make it all better. I am my son's advocate. He is just a 6 year old little boy. I have to fight for him. The system is failing us big time and I can completely understand why there are parents moving overseas because there are better services.
Currently all I (and I'm sure a lot of parents with a child with a disability) get for being the main caregiver for my child is a whopping big $114 a fortnight. A huge 34cents an hour. As I said in my last blog the money isn't too crash hot but the benefits outweigh that. I am one of the lucky ones who's child does show them affection and I get lots of hugs and kisses. I am so grateful for that. The rest of the world around me shits me to tears. If I stay on here much longer I could rant forever and being angry all the time isn't good for anyone. I don't want pity I just want help. This journey isn't going to get any easier and I know that.
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