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Help me - I'm feeling like this is all going wrong

4 replies

benito · 05/04/2011 10:50

I've been fighting for help for DS for over two years. Eventually, got a dx and then a statement, against what everyone else was saying. DS has AS and sensory processing disorder and hypermobility. He is 8.

TA started in March and 1:1s him in the morning. He has some help in the afternoon and has 20 hours on his statement. He has been going to school part-time until recently because there was no help for him in terms of provision or expertise.

School have really tried since the issue of the statement. They've sent people on courses, haven't tried to misapply his hours, have battled to get agencies into school for support.

BUT, we still don't have the full statement in place and I'm feeling like there is a tide turning against me as everyone struggles to justify themselves and why this has happened. I've made a complaint to the LGO so I think this has probably alot to do with it.

ASD outreach came in today. I was told the time and thought this was a meeting with everyone but I saw the woman for 10 mins in the staff room with no one else. She's off to observe DS and then advise staff and will not be reporting back to me. The EP has said likewise - she'll see me separately in future. I feel like they're shutting me out - I am very vocal in meetings but then they largely don't know my son (ASD outreach are useless and don't work with the children) or they do but don't know autism.

To make matters worse, DS's TA has taken to promoting her own views about alternative strategies and the fact that she doesn't like social skills groups etc - as if it's up to her to decide. They seem to go down very well, especially when she has been arguing that it is good that half the provision is in place because it would 'overwhelm' DS!

Of course, everyone bemoans the fact that the statement is 'far too specific' and that this is causing the problems!

DS tells me this morning that he doesn't like the new TA working on the table with him and wants her to go away and leave him and not take him out for breaks. He says he doesn't want to be differeent.

ASD outreach tell me that TA will be attending local ASD unit to see how they teach children like DS and so she can get support from/network with other TAs who work with children with ASD. This frankly fills me full of dread. Loads of generic strategies applied when they don't even know him.

Everyone seems to be running around to make sure the TA feels ok without seeing how DS is managing and they're losing patience with my interventions.

I've got an appeal in place and I'm sick of it all. I'm mostly sick of people telling me what my child thinks and feels.

OP posts:
sickofsocalledexperts · 05/04/2011 12:14

I sympathise fully with you. during my Ds's time at mainstream I also got sick of dealing with numbskulls who had read a paragraph on autism, or maybe done a bit of googling on it in an idle moment, and therefore thought themselves an Autism Expert.s

I found the main things that helped me were, in no particular order

  • being charming, but extremely persistent
  • writing letters, so that I made all my points in writing
  • getting my fab lawyer / advocate on board at certain crucial stages, to lob a shot across their bows (she's Fiona Slomovic)
  • in my letters, using some SEN legal bingo words - like "DS's indidvidual special educational needs" " reasonable adjustments to his disablity "health and safety issues" "duty of care of the school"

The TA sounds like an utter pain. Two strategies occur - a) make her your pal, worm your way in by confiding in her and asking her opinion, then appearing very interested in her answers. Then work round to getting her to do what you want her to do or b) complain to the school that she is totally overstepping her brief ("no social group") and that she is failing to promote his independence by not backing off when he is happily working at the table.

HTH - I've been there!

Triggles · 05/04/2011 13:21

It sounds like a multi-agency meeting would be in order, to get everyone (including you) working on the same page. I would push for this, frankly, as it seems everyone has their own agenda and isn't considering your DS. And I would strongly recommend that you have someone in your corner attending the meeting with you. What does his paediatrician say about all this? Ours is quite vocal and insistent on attending multi-agency meetings for DS2, and always puts DS2's interests first. I cannot imagine how frustrated you must feel right now. I hope it can be sorted quickly to allow your son to be more comfortable and settled.

benito · 05/04/2011 13:32

Thanks. Triggles that is a good idea and I will suggest it. I have said there needs to be MA working as it is clearly lacking.

Sickof - I think I'm long past charming, I aim for pleasant, but mostly just end up reaching semi-polite states of complete irritation!

TA is on her own mission without a doubt but I'll try and use others to reign her back!!

OMG.....when does this ever end????

OP posts:
tryingtokeepintune · 05/04/2011 13:38

Ep and Autism Outreach - do you get reports from them?

Also, do you have email addresses? I find emailing people and asking for advice, resources etc. very useful. Usually you will get what you ask for and then request TA's help in implementing it but if not, at least you will get an explanation why that particular resource is not suitable for your child.

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