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ADOS scores arrived today,want to cry :(

(27 Posts)
CognitiveDissident Mon 29-Nov-10 13:29:08

Well,we already knew DS2 was ASD, paed confirmed this at his very first assessment...

But have just got his ADOS (module 2) scores today, communication total of 8 and social interaction total of 13, giving a combined score of 21, severe autism

I just want to curl up in a ball and weep. How the fuck can paediatrician say he's 'high functioning' and would cope with mainstream schooling?

Added to all of this, nursery can only cope with him(and vis-versa) for 1 hour a day, I have to home-educate him, can't get him into a special school as there are no fucking places,and the LA is on a slash-and-burn special schools closure spree at the mo.

Fuckityfuckityfuck

Apologies for all the swears

ArthurPewty Mon 29-Nov-10 13:34:45

Message withdrawn at poster's request.

StarlightMcKenzie Mon 29-Nov-10 13:50:30

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silverfrog Mon 29-Nov-10 14:17:49

I agree with Starlight.

dd1's dx is severe ASD.

I was at a conference earlier this month, where we presented some video of our children. one of the other mothers there said to me that she would not be surprised if we managed to get dd1's dx removed at some point.

now, i don't entirely agree with her, but it shows jsut how far dd1 has come form the severe, in-her-own-world, shut away little girl that she once was.

CognitiveDissident Mon 29-Nov-10 15:34:57

just got back from school, DS excluded for the rest of term

will 'try again' in January

Where the hell do I go from here?

StarlightMcKenzie Mon 29-Nov-10 15:37:27

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StarlightMcKenzie Mon 29-Nov-10 15:38:37

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silverfrog Mon 29-Nov-10 15:42:30

bloody hell.

straight to exclusion?! there's no way they are following protocol.

I thought exclusions could only be a certain number of days, as well?

how long until the end of term?

absolutely definitely you need their reasoning in writing, along with what steps they plan to take to resolve this (not for a second saying you should accept the exclusion, but they presumably have a plan for January, other than hoping it all goes away, so why can they not implement that plan now?)

CognitiveDissident Mon 29-Nov-10 16:03:19

they've 'requested' that DS is taken out of nursery until January. Following a meeting with Head and reading between the lines (there's been hints that if I don't play ball and go along with their requests then exclusion will be official and probably permanent) I agreed to this.

Ds is not coping in mainstream school,lots of disruptive stimming,kicking, biting and this is starting to happen at home now, plus loss of skills & regression. In January SENCO will observe him,hopefully statement him. All of the xmas excitement and disruption will be out of the way as well.

I've been co-operating with school's requests as I wanted their support to get him statemented ASAP.

StarlightMcKenzie Mon 29-Nov-10 16:08:08

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silverfrog Mon 29-Nov-10 16:13:06

oh god, that is so hard.

but, it really isn't your problem, or your ds'

your ds needs decent provision, to help him settle and progress.

do you have an early years senco?

are you in Statementing at the moment?

I had to leave dd1 failing in her pre--school to prove it was happening. it was the hardest time. but it has meant she has brilliant provision now.

you need to be in touch with the LA over this - do you have a case officer?

I'd be callignhtem and asking them what they are going to do to help my child. the answer is not to exclude and hope it passes.

if the senco is going to see him in January, then the senco can see him now.

I would refuse to take him out completely - that helps no-one except the school.

Agnesdipesto Mon 29-Nov-10 16:49:02

Sorry double times over.

Would echo the dx is not a life sentence. DS3 is moderate / severe autism but his IQ is still just about typical (and rising) so also bizarrely considered 'high functioning". I am sure we will move him up the spectrum as we are now finally getting good (fulltime ABA) support.

Speak to IPSEA and look at their info on exclusion here.

Request a statement now and a move to a special school in January - find the most expensive private option to scare them if they say no places. Look at COP there are criteria where an emergency move to special school can be made without a statement. You need to ask for this to happen. They will find a place if pushed.

I know you said you agreed to it but its fine to say you felt under pressure and actually on reflection you regard this as an illegal exclusion (or whatever the official lingo is ask IPSEA) and want him moved and statemented and your choice of school / provision in place by January.

Given the situation would a permanent exclusion not help? It might strengthen your hand as you have proved mainstream has failed and therefore that blows the EP out of the water?

I also think you need to forget about the school and deal direct with the SEN officer. Have you requested statutory assessment yourself? If not do it now and ask it to be treated as emergency case. As the EP has been in you have one overarching report (see COP) - you don't need any further assessment - although obviously the EP might want to rethink the conclusion! You could request an emergency meeting with SEN officer.

The SENCO has little say - its the EP and SEN officer who decide mostly.

I think you want to put in writing yourself or get them to acknowledge formally that this is an exclusion and use that to justify that mainstream has failed and ask the SEN officer what is next. You certainly don't want to cover up that it has failed. This is your golden ticket.

As an eg my son was refused special nursery - we were told he was too bright - did not need it etc etc - against the EP advice actually who said he did need special school (in our case it was an autism advisory teacher who decided mainstream was fine) and we had to fight for 18 months and 2 tribunals. However a very similar child let himself out of his mainstream nursery into the carpark (thankfully was retrieved by a parent before he got to the main road) caused a major fuss and the nursery refused to have him back without 100% 1:1 and effectively excluded him. Because he had 'failed in mainstream' he was parachuted into the special nursery despite being much higher functioning than my son. So failing and being seen to have failed is exactly what you need to show. Think how bad it would look at tribunal for this school to have excluded your child for a month - could they and the EP honestly sit there and say they can meet all his needs? Alot of pressure is put on mainstream schools and nurseries to say they can meet need by SEN officers even when the schools know they can't. So you actually need to make the most of this. It probably doesn't feel like it but in tactical terms its going to help.

Also you could ring social services and say you now need loads of respite hours / help as your child has been excluded and you are going to struggle to have him home 24/7. If you can make it expensive for a different dept then social services may support you in a special school place. When they compare costs of mainstream -v- special they are allowed to include costs such as direct payments - so if you can show a special school place will save £££ in direct payments / social care then that will help on the cost argument. If you can manage a good cry to the social worker and imply you might not be able to cope that won't hurt either grin

anotherbrickinthewall Mon 29-Nov-10 17:14:54

loody hell what a day you are having. agree with Agnes and others - get them to make the ex clusion formal, don't let them sweep it under the carpet.

anonandlikeit Mon 29-Nov-10 17:26:42

ds2 tests put him at severe BUT he is not severe accross the board IYKWIM, so actually functions well.
He has a low IQ as he has associated LD & has huge anxiety issues with change, repetitive behgaviours etc & sensory issues BUT has very good social & behavioural skills (partly because he is so rule bound & has good receptive language skills) so actually appears very mild.

What i am trying to say is, look at the child not the scores to see how his dx effects him.
DS2 whilst scoring severe is in MS primary with 1to1 and is very happy there.

Go with your instinct.

mrz Mon 29-Nov-10 17:31:30

Just to give you hope
A good friend's son was diagnosed with sever autism 18 years ago. At the time they were told it was highly unlikely he would ever speak or function without support.
He has just been offered places at THREE universities on Sports Journalism courses don't give up!

CognitiveDissident Mon 29-Nov-10 17:56:15

Thamkyou everyone for the support and advice

Am off to Ikea (special treat for DS)
Will formulate my plan of attack tomorrow, have already spoke to Parent partnership and local independent school. Sister works for SS so will give her a call as well.

mariagoretti Mon 29-Nov-10 20:01:22

while you're at ikea... get a note off their creche about how they met his needs (or why they couldn't). All grist to the mill grin

StarlightMcKenzie Mon 29-Nov-10 20:03:24

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daisy5678 Mon 29-Nov-10 20:24:22

J also scored 20/ 21, allegedly severe, but he really really isn't in most meanings of the word (mainstream - with uberStatement, admittedly, advanced in many areas, if very behind socially, emotionally and behaviourally).

It's not a fixed label, the ADOS score, just a measure of where he was in that test, at that time with that person.

Willmum Mon 29-Nov-10 21:30:44

Just wanted to echo the other advice. Don't allow the school to 'informally exclude him'. Make them do it formally and write to the LEA now asking for a statutory assessment, do it yourself and don't wait for school. If you allow them to unoffically exclude him they won't do anything until you try and take him back. They have a responsibilty to provide provision, don't let them sweep it under the carpet.

CognitiveDissident Tue 30-Nov-10 12:43:56

Ha! School just rang, he's allowed back

I spent the morning on the phone to the inclusion officer, who was not v. happy that DS had been asked to leave the day after she visited & set up the IEP.
School then got in touch with me to say that he wasn't excluded,they just wanted to reduce his hours and could ~I bring him in on Friday so the Ed Psych could evaluate him.

I've asked that any decisiion on restricting his hours is given to me in writing. I've also told the SENCO that as he has a formal diagnosis then she can apply for a statutory assessment straight away instead of faffing around with various reports and not doing anything until jan/feb (original plan)
SENCO was unaware of DS formal diagnosis,despite me giving copies of every paed and SALT report to the school.

School now knows I'm all legal-ed up and that I'm applying for SA myself,also that if they ask me to remove him again, it will have to be a formal exclusion.

StarlightMcKenzie Tue 30-Nov-10 12:51:42

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londonone Tue 30-Nov-10 12:54:28

How old is your son. You say he is in nursery. If he is not of statutory age the school do not have to have him. Depends when his birthday is

StarlightMcKenzie Tue 30-Nov-10 13:00:14

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Agnesdipesto Tue 30-Nov-10 13:11:13

Well done you.

I am pretty sure restricted hours is still informal exclusion - unless its childcare rather than free school place - although they could still fall foul of disability discrimination.

I would follow up in writing the initial request to exclude him until after xmas and the new suggestion that hours be reduced eg Just to confirm our dicussions on x and y when you requested ... etc- this will help you later on. As you will have written evidence that was excluded and can put this in with your request for SA as part of your parental info. I mean he has been excluded from Tuesday to Friday. And cc it to inclusion officer. If you start putting it in writing they might think twice next time.

I think if you apply and it gets turned down you have a right of appeal whereas if school apply and is turned down I am not sure you get to appeal - check IPSEA website again. Would be better coming from you they will ask school for evidence anyway

Its for the SEN officer to collect the reports not the school - look at COP and SEN toolkit. You do request (can just be letter on IPSEA) then the SEN officer writes to everyone and collects the evidence.

Enjoy IKEA!

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