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Its not good news and im feeling lower than ever before!

33 replies

bonkerz · 29/04/2008 19:33

So panel met yesterday to decide what happens with DS. We wanted enhanced funding to accompany his statement and to change his school to one that specialises in DSs specific issues.

Panel decided we could have the enhanced funding so anything DS needs will be funded from LEA direct and not school BUT DS has to go back to MS.
When i asked SEN case worker how they had decided this in light of new evidence from PRU (exclusion) and CAMHS she said she had not had anything submitted from either place.
Basically CAMHS did not contact her to tell her DS needs will only be met if he has support from speicalist LSA trained in ASD and PRU did not inform LEA that DS had been excluded which would have highlighted the fact DS is not coping even in a small contained environment!

I immediately drove down to CAHMS and refused to move till i was seen by lead clinician, after half hour he presented me with a 3 page report detailing DS autistic traits as he sees them based purely on the evidence i had supplied THEN he stated that based on the CAHMS assessment he felt DS did not meet criteria for ASD because......

he shows emapathy to others.....no evidence to support this but we have lots of evidence to disput it

He is able to put himself in someone elses shoes....DH and I both disagree with this, DS always talks in 3rd person and doesnt say I did this I did that IYKWIM it always DS did this DS did that.

#He WANTS friends despite not being able to maintain friendships, he smothers people in order to be their friend.
and finally
#basically they are saying that becasue DS showed few ASD traits when he went for his 'staged' assessment that he must of managed to control them and children who are truely on the AS cannot turn on and off thier traits!....i do agree with this but maintain that DS did not suddenly start behaving normally on these 3 days but infact his traits were controlled by the setting and the amount of attention he recieved.

Apparently the doc had sent a health rep on his behalf to panel with insdtructions to tell the panel DS needed to be treated as if he was on the AS BUT infact what happened was the rep told the panel DS did NOT have a diagnosis. The doc has agreed to come to the meeting tomorrow to tell the SEN case worker exactly what he has told me and to give more detail in what DS will need to ensure he achieves in school BUt he did say that in his opinion DS needs a specialist school and if MS is pushed he will definately need speicailly trained LSAs and room to express himself safely.

I then had to drive over to county hall to issue SEN case worker with the letter detailing DSs needs. As you can imagine by this time i had lost the plot! Im totally fed up.
I rang the PRU to ask that they redo DSs letter of exclusion as they had put the wrong childs name on it and the worng date of birth! I also asked them for a log of DSs behaviour whilst he had been there and was told that they didnt keep any log of behaviour or tantrums!
By this point i was at breaking point and decided i am not in any fit state to cope with DS and DD tonight and informed PRU that ds would not be in tomorrow as i was sending them over to MIL so they are out of the stress and rension.....PRU decided that this meant my children were at risk and rang social services on me.

Thanks for sticking with me up to now....

So now i have a meeting tomorrow with DSs
MS SENCO, PRU Teacher, Lead Clinician, SEN case worker, Ed psych, MS teacher and MS head.
PRU are going to say DS cannot stay after may half term, MS are going to stick to their word about not having DS back, LEad clinician is going to tell them DS needs specially trained LSA and small enivronment and Case worker is going to say none of this is possible!!!
It all seems completely hopeless!
Im going to tell the lead clinician i want connors scale and ADOS test carried out befoire im happy with what he is telling me, and im going to re iterate to case worker that DS needs a trained LSA and unit for his behaviour and emotional development and a MS school for his social and educational needs.

Ive packed the kids off to MIL and feel like shit, ive started on the wine and feel a complete failure, I feel like i could just hide in bed with the covers over my head and the door locked and not come out ever again. My eyes are sore from crying and my head is thumping.

OP posts:
bonkerz · 30/04/2008 10:43

its fine magso i think givemesleep DS behaves in the same way as my DS! thank god for mumsnet TBH because alot of the things DS does i dont see as AStraits But from talking on here i have found that alot of his quirks are classic ASD! I think the big problems here are the fact CAMHS dont like labels (they have listed all DSs traits and ruled out a label becasue of 2 small non asd traits) bnut if they actually assessed DS they would see why these 2 things are not registering is becasue he has learnt to mask them. and i think another problem is DS has learnt to mask certain things and WILL give eye contact etc

OP posts:
bonkerz · 30/04/2008 13:02

have done my letter. Been through all the primarys in county and noted intakes and all schools with less than 150 intake i have checked distance from home and time to travel, have a short list of 6 schools all in 30 minutes of home. Not sure if that info will help today but atleast its kep[t me buy!

OP posts:
magso · 30/04/2008 14:07

Oh you've been busy! Well done!
Are there any local AS groups where parents can give you insider information on which small MS are asd/adhd friendly to help with your search? (You don't need a definate dx.)

bonkerz · 30/04/2008 15:58

www.mumsnet.com/Talk/1373/522819

OP posts:
flyingmum · 30/04/2008 16:18

Bonkerz

At the next meeting is it possible for your husband to go too. It sounds like you are really doing this on your own and you need some support. I did lots of my son's stuff on my own but for a couple of the 'big' meetings we did together and I think having two people facing a massive panel just feels better.

All the things that the CAHMS man says about your son could be applied to my son. This is daft. My son can feel emotions as can lots of other AS kids at his special school (they are always getting upset about name calling) it doesn't mean they haven't got ASD!

How awful that the letters from the PRU and CAMS weren't there - its horrendous.

Given what is happening and that you are being messed about with big time, is it worth forking out for a private EP assessment. I know money is tight and frankley if somoeone asked me at the mo to find £500 I'd have the heebie jeebies BUT if you spread that cost over a year and add up the amount of hours of stress and time and petrol that you are doing with these bloody idiots at CAHMS might it be worth it???? I do think it might be worth phoning SOS SEN for advice.

Sending you virtual vibes. Your son is the luckiest child in England to have you as a mum.

bonkerz · 30/04/2008 16:22

thanks for the post flying mum. Private thing would be an option except we established a while ago that LEA wont recognise it and i have met and spoken with a woman who went private for DX that cost her £1000 which would be fine but it cost her another £9000 to get the DX recognised by the LEA!!!!!
See new post below for update!

OP posts:
dustystar · 30/04/2008 16:28

Bloody hell bonkerz I really hoped things were finally on the up for you

No advice to add to what others have said but {{{hugs}}}

jenk1 · 30/04/2008 19:55

bonkerz the lea WILL recognise it, they did with my DS, we had to take them to sendist to get his private dx of AS on his statement and they dropped out the day before (for the 3rd time) but its there right at the top next to the camhs dx of PDD.

we are going through the same with dd atm.

are IPSEA on board with this, cos they were brill with us, our ds was out of school for 2 years, the PRU wouldnt take him and he had 2.5 hours a week of home tuition cos thats all he could handle, our ipsea rep came to a panel meeting with us, might be worth giving them a call and see if they can help you.

you are a brill mum fighting for your son, he will thank you in years to come, DS said to me a few weeks ago he was so happy in his school, thanks for fighting for me mum, it was worth all the heartache to hear him say that.

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