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Was I mad to belive the battle was over????

(13 Posts)
jayzmummy Tue 09-Aug-05 20:36:24

RANT ALERT!!!!

Suddenly out of the blue we have been given two appointments. One with a specialist ASD SALT and the other with an OT and Physio.
SALT was last Thursday and OT and Physio today.

How silly of me to think that finally the local PCT are doing something to address the lack of provision for dxing children with ASD in our area. I had heard on the grapevine that staff had been recruited from out of county for "x" number of days to clear the back log....about time to, I thought.

SALT appointment was excellent and basically she agreed with the private CP's report that J can not be dx with Aspergers due to language delay and yet HFA can not apply because of low conceptual ability....given that J already has a dx of SPD she thought the dx of Autism was the correct dx.

SALT will write to local com pead to say that J no longer needs to remain on local NHS list for dx assessment, as the one we have is far more comprehensive and she is sending us lots of info to help us on our way until J starts back to school in Sept. Three sessions per week of SALT to help with social communication skills will be carried out at school along with two sessions to help with SPD.

OT and Physio appointment today was not so good The therapists had taken time to read all the BIBIC reports. Both are going on a SID 5 day course and both very interested in how the SID programme devised by BIBIC was helping J with his co-ordination and proprioception difficulties.We both thought that finally we were being listened to.

OT was lovely....she supplied us with some "friendly cuttlery" to try and help J to eat with utensils and not his fingers. She gave us some anti slip pads to use when he is eating and is getting some info together about different seats that support "wriggly" children better.

Physio on the other hand hadnt got a bloody clue

J was irritable...it was hot...he couldnt understand what was being asked of him...he was in unfamiliar surroundings and very restless.

The Physio tried to get J to sit and write...J wiggled in his seat...Physio was getting pi55ed off...J was getting pi55ed off....AND SO WAS I.

J kept pushing his seat away from the table...Physio pushed it back...J pushed it away from the table again...Physio shouted...SIT UNDER THE TABLE......So J stood up from his chair and did excatly as asked...he sat under the table and refused to come out again.

DH explained about J taking things literally and that this is part of ASD...Physio argued that it wasnt...I sat thinking "Oh no...here we go again!!!"[banging head against brick wall emotion is needed]

Then Physio starts talking about J's possible placement in Sept....eh???? Possible??? What do you mean possible????

Silly, silly me......the LEA still havent ammended J's statement!!!!!!

Looks like all these appointments which have suddenly appeared are for a reason and that reason appears to be that J may not have a placement at the school after all, despite the numerous letters we have here confirming his placement!!!!!!


AND to top it all the nice OT therapist walked us to the car and on her way she told us "off record" that the Comm Pead will NOT accept the dx that was made by the CP, despite the ASD SALT agreeing with the CP's dxand very very confused!!!!

We arrived home too late to start making the phone calls to the LEA....but guess who will be up bright and early in the morning.

No way are we loosing the placement for J....he NEEDS it.

So fed up...so angry and just feel so sad for J. He has spent the last few months integrating back into school life...we have worried about whether the special school was the right place for him....we've shed far too many tears....spent far too much money paying solicitors to help us on on way and now we could be sitting watching it all slip away....

eidsvold Wed 10-Aug-05 03:53:20

so sorry you are having such a crap time..... Sending strength vibes to deal with LEA. Have you thought about approaching your local MP - are they any good - perhaps some political pressure - given that you have a number of letters confirming his place and now are led to believe that is not the case.

What about getting the minister for education involved given that currently the special needs education component within the Education department is under review with the possiblity of making it 'better'. I was involved in some community consultation regarding this.

As a former teacher - it is amazing to see what happens within schools when they MP's or the press are involved.

Jimjams Wed 10-Aug-05 08:29:10

bollocks to the statement if the school say he has a place he does. DS1's statement wasn't ammended until he'd been at the school for a while. Ring and leave a message with the school- I know its holidays but they're in and out- someone will pick it up before the start of term. If he gets a place in the right school you don't need to worry about the dx too soon- you can deal with the paed at your leisure (and I'd deal by sending a letter of complaint listing everything the idiot man has done to the head of the primary care trust copied tyo everyone you can think of, definitely MP and coucilors, also head of cdc if there is such a thing, the cp etc. The head then has to reply- and the MP etc will ask for copies of the reply. But like I say check out the school place then allthat can be dealt with in its own time.

jayzmummy Wed 10-Aug-05 12:30:19

Its been a busy old morning here with phone calls back and forth to the LEA and the school....fortunatley the head is in all this week preparing for the start of the new school year.

When J first started at the special school the class teacher said she thought he was too HF to be there....however after an initial period she informed the head that as she scratches the surface with J she realises that he needs to be at the school.His needs are great and the only placement that would fully meet his needs would be at the school.

Head teacher is supporting us 100% in J being placed there and as far as she is concerned he will be starting in Sept.

The LEA however are now wittering on about the latest report they have from the idiot Pead who wrote that in his opinion he felt mainstream with full one to one support would be a better suited placement.....remeber this is the guy who by his own admission knows nothing about ASD!!!

Ive pointed out the reports made by the local EP, our independant EP and the ASD SALT all state that the special school would best meet his needs and that the CP, who dx J, also made recommendation that J should be educated in a placement where there is a good understanding of ASD and complex learning difficulties.

J's papers are going to panel next week and although we have 7 letters here confirming his placement it has to be approved by the panel. Once the panel have agreed his placement then the statement will be ammended......

"but what happens if they dont approve placement????"

"then you carry on educating J at home with 3 days support from link education worker as mainstream is not an option for J"

Ive asked her to pop that in writing....if the LEA are agreeing that mainstream would be an inappropriate placement then isnt it their duty to provide an educational setting which will meet his needs????

Slippery little blighters!!![angry}

sylvm Wed 10-Aug-05 13:57:56

Jayzmummy - don't have anything to add but wanted to say how sorry I am that this has happened. It makes me so angry when this sort of thing happens - some of these people have absolutely no idea. Hope it all works out OK but it's not gonna help your stress levels in the mean time. S

Davros Wed 10-Aug-05 14:01:32

I think you're prob pretty safe JM but, of course, you've got to do anything you can to be certain. You've got letters saying he has a place and the support of the school, even if it came to a tribunal, which I'm sure it won't, that would be pretty good evidence on your side. Good luck, poor you!

JakB Wed 10-Aug-05 14:02:42

So sorry to hear this JM. Bloody nightmare and for you. It all sounds very late to be going to panel now, weeks before the start of term.

JakB Wed 10-Aug-05 14:02:53

Hi Davros

jayzmummy Thu 18-Aug-05 14:35:31

and [big fat PHEW!]

All is OK....LEA contacted us to say J's placement has been approved and secured at the special school.

Transport has been arranged....he is not going by minibus as originally discussed. A taxi will be collecting him with one other passenger....my friends 15 year old daughter who attends the same school....just waiting now to hear that there will be an escort on board to as the recomendations were that there would be.....but transport organiser forgot!!!!!

J's being collected at 8.20am and will be home by 4pm....what on earth am I going to do all day???
Im feeling slightly redundant here because DS1 starts at the secondary school in Sept and transport is arranged for him to!!! No more school runs for me!!

MrsEffervescent Thu 18-Aug-05 22:30:49

i am so glad...i read all you posted about this and just felt so sad- i didn't feel i had any useful advise!

thank god!!!

eidsvold Thu 18-Aug-05 23:31:12

so glad to read all is sorted....

what will you do - put your feet up and enjoy a coffee rther than battling traffic for school runs

jayzmummy Thu 18-Aug-05 23:36:34

Im thinking of approaching Home Start and offering my services for a couple of mornings a week.

Also had a thought about possibly applying to be a LSA in a mainstream school.....now that would be interesting!!!!!

maddiemo Fri 19-Aug-05 12:57:07

Well done. What a weight off your mind

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