Here some suggested organisations that offer expert advice on SN.
Just need a moan reached saturation point with LEA / statementing etc etc(8 Posts)
After 5 months have finally got LEA to agree to assess DS (ASD) but clear their heart isn't in it / no intention of granting statement, and they are throwing us a bone to make us feel heard in hope we will give up and go away. (Also because their previous behaviour and absence of support for DS would not have looked good at Tribunal). So we start the merry go round again - lots of meetings, new reports, having to defend everything we say to everyone, reams of paperwork, being put down, dismissed, labelled as greedy, neurotic, delusional and over estimating DS's needs, scaremongering about the (in fact very excellent) special school, bullied, blatant breach of COP (pre judging outcome of assessment), lied to, emotional blackmail (last week told not to forget to enjoy my child like I was being a neglectful parent for daring to spend so much time fighting the LEA / doing private therapy) - it just goes on and on. Just so tired of it all. I keep reading all the "guidance" and just want to cry that they ignore it all - no wanting to do the best for my child or working in partnership in evidence - but I guess they know I am too exhausted to start a complaint on top of everything else. How do you just keep going - and this is just the start - we have years of this. I honestly find this fight fight fight almost harder than getting the diagnosis because it just never ends. Sorry rant over.
I have no words od wisdom but i can sympathise with you.
You sound so fed up with it all and rightly so it seems. It simply isn't fair, we shouldn't have to fight with teeth and claws to get the help our kids needs.
We are only at the begining of the whole dx procedure and i'm already fed up with the amount of loops we have to jump through, and the time all this takes, everything is moving so slowly, and so many people are already involved with some slightly different opinions (although now i only listen to the paed as she is the one who is the most forward with her words and actions).
I hope you feel a whole better tomorrow and ready to face things and fight again. xx
Just to echo what Starlight said - keep a written record of every conversaton you have - date, who you spoke to, what was said.
You will find this invaluable if you need to go to tribunal.
Don't let them bully you - if poss always take someone with you to meetings and let them take notes.
Thanks Starlight I haven't sorted out how to CAT yet but will sort that tomorrow as it would be great to have a template to work from which has been approved - we had to do reasons for appeal of first decision so we have a starting point but things have moved on since then as we were asking for a special nursery place but as that looked unlikely have now started some part time aba.
ooh that would be great not really known about the CAT thing before so had not planned to use it
found this today: http://www.nationalautismcenter.org/pdf/NAC Standards Report.pdf
USA report which compares interventions - pro aba - says still advise to rely on NRC 2001 25 hours a week year round
having a better time - our paed is being helpful and even wants to come and watch an aba session (he's new and actually interested in learning more about autism) and doesn't think we're total neurotic loons - in fact said DS one of more severely affected children he had seen
which was not nice to hear but helpful in terms of getting support - of course i wanted to run back and say and exactly how many asd children have you seen? 5? 105?
can't believe i missed gordon brown webchat
Join the discussion
Please login first.