What should we ask from school now?

[Sops]

we have a second meeting with head teacher (and class teacher and senco too I think) next week. They all have recognised ds' (5) issues with not sitting still and not following instructions but say there is nothing they can do. They say he is very bright, imaginative and articulate, we think this is masking his very real difficulties in other areas and strongly suspect pathological demand avoidance and non-verbal learning disorder maybe some motor issues too.
His writing is terrible, he can't really write even his own 5 letter name and has made almost no progress since starting school.
Although he is "one of the better readers" we think he is capable of much more than he shows as he appears to have made very little progress from where he started in sept.
In his learning journey they observed that he can count to 20, but he could count to 50 before he started school. Is he regressing or is he just not showing what he can do?
We keep saying we are worried about year 1, as he will be expected to do so much more sitting still and following instructions and also writing. Teacher said," you never know he might well be fine"
we are currently waiting to see paed for assessment and also have family support worker. Support worker implies that school should be doing more, so what should I ask them to do now?

begin the statemnting process but if they say no its too soon , it isnt its up to you , you can begin the process yourself a lot of LA's take more notice of the parents than the schools anyway , the statements are not just for educational needs they are also for physical/social but id do it now as you say hes already not making progress possibly even regressing
see this link here to download form
www.ipsea.org.uk/Apps/Content/HTML/?id=324
the sooner you see the paed the better and the sooner you begin the assesment of your DCs needs the better IMO , hth ,good luck

I also think that my son is capable of more than he is achieving although he has average Y1 NC levels at the moment as he is achieving these despite his concentration, sensory and motor problems and without support.

The EP is going in to observe and test him in June. I have no problem with him achieving average scores if he is of average intelligence but I want to understand more about his level of intelligence and any problems with working memory etc.

If he should be achieving more than 1B/1A based on his ability then hopefully the EP report should be able to help me push for more support. At the moment, the school feels that he is achieving OK due to his NC levels and as his behaviour has improved since the start of Y1.

A bit scared of this statement malarky and wonder how severe his difficulties are... I wondered if I should ask for an IEP?
Teacher did some detailed observations of him after our last meeting but as she saw him playing with friends and interacting ok, she says there is nothing more she can do.
I feel that they are looking for 'classic' asd behaviour, which of course they won't find cos he isn't classically autistic!
They say he is doing fine academically, and according to sen criteria he has to be below average to get further help. However, I have checked code of practice and it says clearly that help should not be restricted to those children and that early intervention from outside sources can play a crucial role in the early identification of sen.
I have got together a document outlining our case for further action and quoting from sen code of practice but dh is worried it is too adversarial and we will alienate them. I admit it sounds very officious but I worry that they will fob us off again.
Ben10, like yours our ds achievement average and behaviour has improved (anger outbursts, but not sitting still or following instructions) so they think "job done" but we feel he is just tolerating reception because there are few demands in a free-flow environment. The year 1 classroom is a third the size of reception, they will be expected to sit at a named place for much of the time, there'll be much more writing too- he will not be able to cope we are sure. But it seems school are happy to wait until crisis point. It doesnt help that the head is leaving at the end of the year and we have no replacement so ATM no head at all next term!

I wouldn't get at statement as the school have not even tried to meet my Childs needs yet, so would be hard to prove they can't!

the statements not just for educational purposes , but i didnt realise he hadnt and IEP yet sorry yes he should have an IEP but they need reminding hes awaiting his paed appointment and you should in meantime makes notes lots of notes of behaviours at home and school, i guess if it were possible you could be there in background as a parent helper to watch for some additional behaviours playtime especially a good time to observe,they have not noticed as a class full of 5 yo im sure they are busy and if they think hes ok they wont be keeping an eye out, i think its one of the reasons schools often dont seem untill things get very bad to really notice they seem oblivious , and yes you do often get fobbed off like you say atm receptionss pretty free flowing /easy going no real pressure it really if he is ASD/ AS or something on these lines as they progress through school aniety increases due to peers, expectations from teachers for quality of work and behaviour that they tend to really stand out and THEN the school flag them as havin sen when they could have been getting help earlier to stop them not progressing or even regressing in certain areas ask about EY action and action plus but i expect (too long ago to remember for me) he will have to have an IEP as see how he does or doesnt as the case may be progress with that first.

sorry anxiety

I have about 16 pages of observations of my own. I was going to start a diary but within about 3 hours I'd realised that was completely unfeasible as there was too much to write down,
The trouble is, his behaviour although sometimes clearly extreme it is often subtle. For example,it's only recently that we've realised he will virtually never say hello or goodbye or reply to a direct question, even the most innocuous and it is not through shyness. Although he will initiate conversations with people I wonder how much of it is actually reciprocal 'normal' conversation- I suspect (and this is where you need an expert evaluation) that ds directs the whole conversation. Although it might appear that he has very good skills I think that it's not a real conversation. Verbally he is very advanced but that is not the same as conversation skills. But school will never spot that subtlety in a class of 30 will they?
Should I start a thread asking for advice on how to get an effective IEP?

yes for that you need the EP and later the ADOS , good that youve already been taking notes they will be invaluable you can give a copy in bullet points perhaps to the paed when the time comes and any other info/ paperwork you have accumulated. is the conversation one sided ie just about what he wants to discuss like favorite game or tv toy ?
i would start a thread on IEP yes and to answer on the conversation skills my DS conversations are one sided although hes verbally advanced and has a large volcabulary its the art of conversation hes lacking and social skills to go along with it.

Ds conversations are not monologues and usually involve lots of questions (which he asks of the adult) but he generally ignores questions you might ask of him and carries on regardless of what the other might say on his train of thought.
He also has no empathy whatsoever.
We have done the strengths and difficulties questionnaire with family support, that came out with very high scores on every area.
CAST score was 16 so just onto asd territory.

Sops
Many of the issues you raise would seem to suggest some form of Auditory Processing Disorder (APD), and may be some other issues as well
APD is a listening disability, or having problems processing what you hear, all sound based input, including speech, sirens, alarms and sounds of nature etc. Those who have APD. like me, have problems following conversations, have problems following verbal instructions, and are not able to phonetically sound out new words.
There was an online research program carried out by APDUK, the adult APD forum the OldAPDs in conjunction with Australian Psychologist Damien Howard. This project lasted for 2 years, and the resulting articles can be downloaded as part of APDUK Newsletters No1 and No2 The articles "Controlling the Chaos" and "The Trouble with Strangers" try to explain the issues that adults who have APD experience, and will also apply to children who have APD before they become adults with APD.

Damiems interest in APD was based on his work in Australia that has a communinity which has no natural immunity to a severe ear infection similar to Glue Ear, which results in them to acquiring APD. AS this community had no prior experience of APD, couples were blaiming each other for not listening to one another, so Damien was having to act as a marriage guidance councillor for these APD couples, and was asking us how we coped with our APD issues on a daily basis.

Dolfrog, thanks, I had already noted that ds overlaps with apd except that he is in the top phonics group and seems to have no problem making phonetically plausible attempts at words when using a keyboard. For example he can write Lego ninjago, or spiderman or Indian (Indiana jones). He cant really write anything though.
He seems to listen well and has a very good memory for facts ESP about his favourite subjects of dangerous animals or anything about the past.