A parent's battle

[DXB2OZ]

So, for those of us with children who have a diagnosis, who are about to get a diagnosis or we simply suspect that a diagnosis is looming, I thought it might be practical to start a thread to help us negotiate our way through the "system".

I don't know what the experience of others has been, but I found it incredibly confusing, simply because everyone assumes you know things.

My learnings are for the state of Victoria

So, I have learned that without the right diagnosis, the school doesn't qualify for additional funding. So very soon after our arrival, we were encouraged to get another diagnosis. I think it may also be necessary for additional support, but I am not sure.

I have learned that with some diagnosis, there is a Centrelink allowance ($37 a week, but with the cost of meds, that can make a huge difference). Under each diagnosis, you get different levels of support. So, with our Aspergers diagnosis, we qualify under the mental health plan for medicare rebate for 10 sessions per calendar year. Under the support for autism plan, we get 20 free sessions with a registered provider only between the time of diagnosis (provided it is under the age of 13) and the time of the child's 15th birthday.

I have also learned that the school system can be incredible with their support and involvement. I have learned that although everyone has recommended group sessions, finding them is like finding the Loch Ness monster - so far, all we have are rumours and disappointments.

I have learned that concerta is freely available in pharmacies, but straterra is a major problem - I know have a lovely , local, South African, chemist who I phone a few days in advance and he orders it for me. I have also learned that Chemist Warehouse can have stocks when nobody else will.

I hope others will share their experiences as one of the biggest and scariest lessons has been how much I don't know.

But I have also learned that my son has a wicked sense of humour, a wacky imagination and gives incredible hugs - so we'll be ok ....somehow.

[joweni]

I am a special ed teacher in Adelaide and I just wanted to congratulate you for being so proactive and involved in your child's education. I deal with parents daily who believe that all aspects of their child's "education " and that includes providing breakfast, administering meds, finding counsellors, doing their exercise program etc -I could go on all day- is the responsibility of the teacher. I am going to do casual work for a couple of years because I am totally worn down but these demands on top of the requirements ( read red tape and paperwork ) of the department. Love my actual job being in the classroom but just plain worn down by the rest ?please keep doing what you are doing your son will be beneficial much......good luck and enjoys the hugs!