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  1. #21
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    Quote Originally Posted by Zombie_eyes View Post
    Yep Ds#2 was grossly under diagnosed as well. Soooo many more problems have arisen so its good to get a clearer picture and more accurate dx. But all those formmmms and assessments and money. Boooo
    That's what I find so frustrating. I feel so ripped off as it wasn't long after receiving the diagnosis that so much doubt was raised.
    DS doesn't cope at school, he heading down the path to expulsion at a rapid rate. The principal won't see past her narrow minded and judgemental view. The education department won't help because we don't have the right words on a piece of paper.
    I've recently found a decent paed but he won't accept Fahcsia funding so it cost $375 per session with about $225 back. He won't do a diagnosis either. He thinks the current psych should just review it and update the report.

    I'm having plenty of frustrated 'ARGH' moments as I'm sure you can relate.


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  2. #22
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    Zombie_eyes is offline Formerly Diamondeyes
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    That sucks so bad. Im so sorry you don't have a supportive school.

    Do you have any autism schools near you? Our closest is 40 minutes away so not really an option for us.

  3. #23
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    Quote Originally Posted by Zombie_eyes View Post
    That sucks so bad. Im so sorry you don't have a supportive school.

    Do you have any autism schools near you? Our closest is 40 minutes away so not really an option for us.
    The one at Thornton would be a bit of a drive but there are schools that have satellite classes scattered around. One is only a couple of suburbs over which would work well. I was looking at the criteria to apply though and it said the diagnosis had to be made within the past year. Ours is now a year old.
    The paed said the psych should be able to help push for a spot at an Aspect school though. I'm definitely going raise this point next appointment and if we are still getting nowhere, it's time for a new psych.

    The paed has suggested that the psych update the diagnosis to reflect the new DSM (is that what it's called?) And to add ADHD and possibly ODD. If that happens we would at least stand a chance of getting a spot in a school with a support unit.

    It really shouldn't be this hard. My poor child continues to get lost in an education system that does not support or accommodate him all because I don't have the right words on a piece of paper.

    Does your school have a support unit or does your DS cope well in the main****** classes?

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  4. #24
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    They dont have support classes at our school. And they only offer their specialty units (occupational therapy learning etc) upto year 2. Ds#1 is in year 4 now and he also lost his funding in the budget cuts. So they treat him like neuro typical child. He doesnt explode or do any behaviours that land him in trouble, he shuts down, becomes non verbal, not really there.

    but when he gets home its very difficult. He spends over an hour self regulating to get himself to a place where he can eat and sleep. (Although we are going to need to try meds to help him get to sleep) because its very difficult for him.

    Its a hard slog, last year his teacher refused to believe his dx. Because her only experience with autism is the screaming child who throws chairs (which is my ds#2) so we often don't get taken seriously. Everyone is of the believe that autism after 7 is a lost cause and that you cant help them after that.

    Infuriating.

  5. #25
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    ZE my nephew is 12 and my sister has ongoing support this year while he settles into high school. He is also a quiet kid in terms of how he self manages his autism, but can explode at times and she's had to pick him up from school on those days. At the moment his big struggle is he hates popular music, and of course given the age he is it's always playing (after school care, holiday programs etc) so it's a constant struggle for him and his mum.

    Her job entails putting people in contact with the right support netowrks and finding resources. It's hard to find them but they do exist for older kids. If you ever want her details I can put you in touch with where she works and you can take it from there.

    I hate how main****** education treats kids the same way. DD2 has a severe anxiety condition and she shuts down at school because her class is so chaotic (as often preprimary is). The school has so many kids that struggle to get through each day and are loud and disruptive, the teachers are worn down from lack of funding and support and the quiet kids just shut down further and hide. It's awful. For everyone.

  6. #26
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    That's so sad. It sound like ASD kids are written off as a lost cause everywhere.

    It's infuriating when a teacher is telling you that there is no autism. the principal at the school told me DS didn't have autism and he was clearly just a bad child as a result of the parenting he'd received. She's worked with so many autistic kids and none of them are like my DS apparently. I really should have just asked her to produce her psychology degree to back up her claims.

    Would you ever consider home schooling? I've heard lots of parents of ASD kids end up resorting to it. I don't think I have the patience or ability to but at the same time I just want to shield DS from all the BS out there and minimise both of our stress levels



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  7. #27
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    HM I have another nephew with autism who is now 20. He is much more severe than the nephew I was speaking of earlier (massive speech delay, low IQ, low muscle tone etc) and he attended a specialist autism school in Brisbane until year 10. My SIL had to travel an hour each way to get him there but he didn't fit into main****** schooling so she felt she had no choice. He thrived. He actually enjoyed going to school. He went to a mian****** school for 11 and 12 and hated it again, but coped so much better. It's an alternative to home schooling.

    We're considering homeschooling DD2 one day a week from term 3 unless her classroom improves. I had to keep her home on Friday as she had a panic attack Thursday night and wouldn't sleep until midnight from being overstimulated and trying to keeping her sh!! together all week.

  8. #28
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    Sonja, that sounds like a great alternative to main****** schooling. My DS has low muscle tone, motor planning issues, and sensory issues but none of it is in formal documentation. The more I think about it the more disappointed I become with the organisation that carried out the assessment.

    His cognitive ability, there are no issues, but he continues to fall further and further behind at school as they just can't give him the one on one time he desperately needs. There is no funding for his diagnosis so he doesn't even get an aide.

    The situation sounds awful for your DD. I had massive anxiety issues as a child and can understand how your DD must be feeling. It's just such a shame that the education department is failing so many children.

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  9. #29
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    Thanks sonja xox

    Im sorry to hear your daughter is suffering so greatly. Have you been offered medication for her? We have been offered for ds#1 but i wanted to try as much occupational therapy strategies as i could before i take that route. Our child psych explained anxiety to me a few weeks ago as she believes i suffer from it in a crippling capacity and told me that it can stem from a series of things that change the brain physically. Its very sad. I hope your little person can overcome her struggles with it. You're a good mum for persisting with strategies to help her.

    Harvest, it sounds like you guys really need a huge accurate set if assessments.

    My advice is get speech and OT assessment and then take those to the psych (maybe it sounds like u need a new one tho) and then do the assessment with them. Then back to the paed for the official letter of dx. Ask for them to include a percentage of where he sits on the spectrum. *hugs*

  10. The Following 2 Users Say Thank You to Zombie_eyes For This Useful Post:

    HarvestMoon  (03-05-2014),Sonja  (03-05-2014)

  11. #30
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    Zombie.. if you're going to get iq testing done also look at what test they user. . the name etc.
    I know families up here in qld who have paid about $500 out of pocket for testing. is so expensive.

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