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

[bonkerz]

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.

[daisy5678]

for you. Must go and settle my munchkin now but will be back later. xxxxxxxxxxxxxxx

Keep going on the wine...

[oiFoiF]

oh bonkerz, I havent followed your history at all as its not within my knowledge but I am sure no-one thinks your children are at risk. You dont sound a failure at all. You sound like someone who is fighting for their child, how can that be failure? Its nothing of the sort.

I really am SO sorry they are all behaving like this but have you kept all the correspondance from everyone? Have you been in touch with people like ipsea and parent partnership?

[oililymad]

big hugs coming your way
I really hope you can make some progress tomorrow
Someone must see this whole situation is crazy and take a step back to see what's in your sons interests
its not about a dx its about providing an appropriate education for his needs
good luck
xxx

[bonkerz]

Parent partnership have been supporting me for 2 years now and are at a loss of what to do next. We are going to appeal on 16th Spetember and i feel strongly that we can win and get the decision for MS overturned becasue all the evidence says DS needs a special school, problem is what we do from now till then. PRU will push for DS to be intergrated into MS as they cant keep him any longer BUt we know DS will not cope in MS and will be permanently excluded if put back in MS.

It all seems such a mess and i dont have the energy anymore.

[coppertop]

Bonkerz

I've got to rush off in a minute but couldn't leave without posting.

Good luck with the meeting tomorrow. xx

[spacegirl]

Bonkerz
Why is nothing straight forward when all you want is the best for your DS. Really crap is an understatement. Hope meeting goes ok! x

[drowninginlaundry]

oh my god
it's such a farking muppet show, the SEN system isn't it.


best of luck for tomorrow, don't give up

[daisy5678]

The clinician's reasons for ruling out ASD are strange.

The wanting friends thing is true for most HFA/ AS kids, who want friends but don't really 'get' how to do friendship normally.

The empathy and being able to put themselves in someone else's shoes - I know this links to the whole theory of mind thing but intellgent kids like ours are able to 'learn' responses to others' emotions, but I think that it is sympathy rather than empathy - e.g. J will hug me if I say I have a headache, because he has learned that that makes me happy (because I have told him it makes me happy and feel better).

If someone does something mean to someone else in a book, he has learned that the other person will usually feel sad. It's not instinctive; he's just clever enough to read the cues.

He knows that if I ask 'how do you think they felt?' when he's hit someone, the answer is probably 'sad'. Again, no empathy, but knows what the answer is.

I was quite horrified at the autism dx for J but that's because I didn't know enough about ASD...now that I do, I am horrified that your son isn't getting a dx.

I agree that you must must must push for an ADOS - the Connors things you can do yourself and get the PRU/ MS to do them and send them to CAMHS. But the ADOS waiting list may be long, so what to do for now?

Well, unless you're willing to have him out of school for half a term, I would go with the mainstream on the basis that A) the LSAs are going to be trained anyway because of the unit (and I'm sure that the HT realises that it's in his interest to make sure that this goes well, for the sake of him and the other kids too)

B) the HT will probably allow him access to the unit even if it's not his official placement(for the same reason)

C) if it all goes tits up, then you can ask for an Interim Review of the Statement (for kids at risk of exclusion) and ask for it to be amended. Or you have the very winnable Tribunal coming up too and so changes can be made then WITH the evidence that you may then have to support your case that the LEA's suggestion hasn't worked.

....unless...I've got your message totally wrong and they don't mean go to the MS with a unit, but the original MS! Surely you don't mean that????

[bonkerz]

the plan is he goes to another NORMAL ms where Noone will be trained and he will have a standard LSA, the plan according to the panel is if they find a school thats 'small and nurturing' that DS will cope!!!! Even if we get agreement for the LSA to be trained in ASD then it will be months before this is implemented!

What you said about theory of mind is also true for DS, Classic example of the empathy thing is his 'best firend' fell off her bike yesterday right in front of DS, she was crying and bleeding from her elbow and he did NOTHING, he continued to ride around her, it was actually very uncomfortabele to watch him being so disconnected when every other child was rushing over to help her.

I have the connors scale done from MS and home so will give those to the doc tomorrow at the meeting, i also intend to ask him if i should place another formal complaint requesting the ADOS test or if he is prepared to do it for us.
The friedn thing is a tricky one, a year ago DS was enthusiastic about being friends with peopple but he smothered the friends and dominated them, if he wasnt in control he coulnt cope, the problem we have now is he hasnt made any new friendships since moving to the MS in July las year and has managed to keep 2 friends from old MS but only becasue i am close friends with thier mum and they are 'forced' to be friends IYSWIM. When they are here (boy aged 6 and girl aged 8) Ds doesnt play with them unless pushed into it.

[TotalChaos]

sorry that the panel have been so unhelpful. hope you make some progress tomorrow.

[bullet123]

Sorry the meeting went badly .

[daisy5678]

Oh they're absolute idiots

Do they have a 'small and nurturing school' in mind...does it exist? What's their reason for refusing the MS school you wanted, even if not the unit? At least they have the expertise and the understanding to cope, even if in the pure MS bit. You have a legal right to have any mainstream school named in Part 4, unless it would be a poor use of resources (no) or it would be incompatible with the others' education (probably not with full support, and certainly no more so at that school than any other MS).

Which school have they actually named in Part 4 of the Statement? Because they have to put the one you want, as long as it's mainstream, unless the above two reasons apply. Which they don't.

OK, if the worst comes to the worst, there are TA agencies, where they do have experienced staff. Very pricey, but the LEA will have to fund it IF they accept that he needs trained staff. If the doctor says it's needed, they should be open to this, especially now they've accepted picking up the whole tab.

The friendship thing sounds identical to J, btw, and remember his ADOS scored him virtually full marks for autism. When the psychs gave feedback, they said they were surprised by the level of the autism, because although his main psych knew it was autism the first time she met him, they saw him in quite sociable verbal mode on the day of the test. They said they were surprised that he scored so highly but that was the good thing about the ADOS: that it could pick up the subtle things. Definitely worth asking the doctor to do it - remind him that it is the gold standard and so why would they not want to do it if it will confirm one way or the other?

Good luck. I know things seem absolutely rubbish right now, but you are not powerless - MP, papers, complaints to head of children's services (official stage 1 complaint)...I know it will take more energy than you have, but remember the appeal will probably get you the outcome that you want, so things won't be this bad forever xxxx

[magso]

Sorry! Stunned for you! ((hugs))

[yurt1]

[ouryve]

[macwoozy]

This is just terrible, I'm sorry bonkerz

[bonkerz]

thanks you lovely people!!! Im feeling still really low today BUT i had a lie in and im just going for a long laze in bath seeing as the house is totally empty THEN ive got to get on and write a letter to the DOC. I dont want today to turn into me being a jibbering wreck and not saying what i want to say SO have decided i need to write letters to Doc at CAMHS basically dispuing what he has said in the letter and backing that up with internet evidence and then i also want to write a formal letter to PRU teacher requesting that she makes PROPER notes about DSs behaviour ie how long he is in the time out zone each day, types of behaviour he is displaying and if he self harms, shockingly the reports i have got from them are basic and say either good day or bad day and nothing else!

[bonkerz]

So im now typing the letter and the doc has wirtten that becasue DS kicks off when any negative comments are made about him that means he has a high level of concern about how others view him and thereofre does not have asd ! How can i answer that? DS will braodcast he watches lazy town etc and not be worried that the 8 year old boy next to him thinks he is a baby etc and if DS is that worried about how other people view him then surely he would have started to change his ways by now????

[magso]

Hmm - (just my inexpert thoughts) could this be a learnt response leading to 'high level of anxiety' (to use same phrase)? People make negative comments - child gets into trouble or treated negatively by peers - child reacts when negative comments come again ie its a learnt responce to previous experience. Your example is good - as he cannot predict the other childs potential thoughts and he has not learnt that he would be perceived as babyish he does not know to not tell his friend. ( Bright children with as/asd can use their intelegence to compensate for their lack of social awareness)
I thought low self esteem and anxiety were commom problems for bright adult with as.
Dont know if that helps!

[bonkerz]

thanks magso, YES i do believe DS has lernt to behave in this way and that it is a response to his high anxiety levels rather than a response to the negative attention. i do also belive that DSs high anxiety and low self esteem is a symptom of his ASD and not just an unrelated illness IYSWIM

[magso]

Yes my son who has SLD (so not as able as your son)reacts to negative comments if he perceives them as negative (he has poor language so he reacts to the tone of voice or a certain look!). He had a couple of very difficult years at (MS) school and this reaction developed. He pushes nasty words away!

[bonkerz]

what you have just said about reacting to tone of voice etc applies to my DS, he has been known to still be screaming and thrashing about despite having made the right choice and the teacher praising him but not changing her tone! Sometimes im not angry at all but he percieves that i am becasue im stressed and my tone is not friendly IYKWIM

[magso]

Yes Ds is the same! He often misinterprets a look or 'atmosphere' for want of a better phrase since I don't know what he misreads!
(Ps caution - Ds does not have a full dx of asd either )