Does ds need an IEP?

[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 as they think he is fine academically. Previously he had 'anger management issues' but these seem to have abated.
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.
They have observed him and said that as he can play with others and interact ok there is no evidence of a problem. They seem to be thinking that classic autism is the only condition out there, i know they aren't going to see those characteristics because they aren't there. There are however a million subtle indications that he has PDA and nld, but I don't think they are evident to the teachers (that is not their failing as they are not developmental paediatricians!)
However, academically, we are not convinced that he is fine. 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?
He has become much more introverted and is significantly less happy since he started school. He has lost his spark and his interests, and his liveliness.
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 (gp says should not be a long wait) and also have family support worker. Support worker implies that school should be doing more, so what should I ask them to do now?

[AdelaofBlois]

It seems to me that one of the problems is that you are (understandably) approaching the school with an SN concern, without yet having what they might take as proof that there is one. I'm afraid many teachers react a little badly to this, when they might view the problems as related to age or character. From what you say this route is resulting in them putting the shutters up and, sadly, you may in this case be best advised not to push further until after paed assessment (which may also not be what you want-paeds too have an autism bias that is not entirely helpful).

What concerns me more is that they are not listening to what you are saying about achievement. There is a real case to be made here that your son's recognised behavioural issues are problematic and diminishing his chance to fulfill his potential. It is not enough to say he is doing fine anyway-the question is whether he is doing all he can. If his behavioural issues are causing this, then you have the right to ask that something be done.

Back in the day, many children in your son's situation had what was in effect an IEP without SN and without it being called that: teachers asked them to meet some targets for behaviour, noted that they had, reserved praise for them etc. (this still goes on, witness the threads about naughty children getting certificates). Many IEPs written with SN in mind are effectively more compassionate versions of the same-recognising the root of the problem but also monitoring and encouraging appropriate behaviour. I would be asking the school about this-what can you do to improve his behaviour, to monitor and encourage change. If nothing else, this will help the paed in her or his diagnosis.

I am not a SENCO (mrz is), and what I suggest is not best practice I would aspire to-the school needs to be working with other agencies to aid diagnosis, not defending its own decisions. There is also clearly a value judgement to be made concerning whether pushing a child who might be unable to behave better is a good idea. But, from what you say, I do feel that you might get a better response now if you say 'this is a problem, what can we do to solve it?', rather than get dragged into discussions about SN and explicit IEPs.

[ArsumLardis]

Ask the support worker what more they think the school should be doing.

[Sops]

The school have confused me really.
At parents evening back in march, teacher brought up behaviour problems again (we had already had a couple of meetings about it). We told her that we were very worried and that we had seen no improvement, in fact a deterioration, in behaviour over the last two years and we were very concerned for next year.
She said "so what you're saying to me is that you'd like me to get some further help for him?" and we were surprised but said "yes, I suppose we are"
She then arranged a meeting with the head and senco. So that was all her idea, we certainly didn't really expect it.
When we got to that meeting it felt like teacher was very understanding of our concerns, head open to our thoughts, but senco already decided we were neurotic parents. They said we should see the school nurse, when we did she referred us to the paediatrician and family support. As I said, family support said that if they have no further ideas to help ds they should get in a teacher specialist if not the Ed psych.

[Sops]

We are a bit concerned about how they might react to the fact that we think he is not fulfilling his academic potential. They think he is doing fine. If we go in and say "ahhhh, but he's not fulfilling his potential" I think they will really see us as neurotic parents who are deluding themselves into thinking their son is some kind of genius!

[lljkk]

I wish I could say this properly... it just sounds like you're making an issue out of nothing. He's not perfect, but he's on target. He's only 4 or 5yo, give him some time to mature & develop.
If he's unhappy at school then maybe work on that.
Sorry if I am not reading this correctly, but nothing in the OP made me think "severe problems, act now." Plenty of it sounded within the "normal spectrum".
That's why I think only people on the ground who can meet him (hopefully many times) will be able to assess if he has SN or not, and needs an IEP (or not).

[Sops]

I'm not looking for an online diagnosis so that's why I didn't bother with a big list of 'symptoms'
it was the teacher who initially suggested the meeting with head and senco so they certainly know things aren't quite right. They asked us to see the school nurse who has referred us to paed. we are acting on the big picture there.
The question is, do we need to do something about the 'academic' side in the meantime? and would an IEP be a good place to start?

[AdelaofBlois]

As I said before, and hearing more I'm more convinced, I think the problem here is that two issues have got confused. The first is whether there is a root SN cause for the behaviour, and disagreement between the school and you over that. Getting the SENCO involved has forced a confrontation which is not helpful, has led to you feeling you are viewed as 'neurotic', and has made the issue into one of (as yet and with respect to you) amateur diagnosis.

But, before that, everyone admitted that there were behavioural issues, that something should be done. It seems odd to me that, if this is accepted, it is not also accepted as likely that these are affecting his intellectual development.

The school and you need to have a chat about why he is unhappy, how his behaviour can be improved, and what you can each do to support him. That may mean drawing up something like an IEP-some targets for his behaviour and for monitoring them-or may not (and it won't be an IEP because that is linked to SN). But something should be done to break the log jam that has arisen because all sides are now thinking narrowly of SN not broadly in terms of behaviour and attainment.

[Sops]

Yes, they still say there are issues ie. Following instructions and not sitting still (and that these are 'significant' rather than average at this age) but say there's nothing to be done.
Just makes us feel a little like they've written him off.
Family support I think were bothered when they saw how high his scores were on the strengths and difficulties questionnaire- very high in every sector.
At our last meeting asked teacher how we could help him at home on these difficult areas and she said there's nothing you really can do.
Really, nothing we can do to help him even with his writing??

[Sops]

My worry also is that we have big concerns over how he will handle the move into year 1 ( end to free-flow, (sitting at named place, lots more instructions, lots more writing). But our head is leaving and we don't have a replacement until the spring term- no one knows what well do in the meantime. It might be difficult to get action then.

[Sops]

I know we can help with writing skills (mrz posted a big list tother day) but was surprised teacher said nothing to be done

[sarahfreck]

A lot of teachers have little or no training in special needs. Some SENCOs are brilliant (mrz) but others are not really and have ideas about "classic" learning difficulties but don't understand how these things can vary.

On top of this PDA is something thatsome SENCos will not have even heard of, let alone other teachers. ( I wouldn't have done if I hadn't by chanced worked to support a boy with this condition). I think getting an early diagnosis if he does have PDA. (try Elizabeth Newsome Centre if Paed isn't helpful) is your best bet. Until then, keep throwing the onus back onto the teacher (in a nice way of course). Eg "Yes we can see that such and such technique for helping behaviour isn't working. What else can you suggest? with maybe a tentative "At home we find ABC can be useful- do you think this could be adapted to work in school." With academics, I'd just pick on the one or 2 specific things that concern you the most. "We've noticed that he's still struggling to write his name. Is there something you can do in school to help him with this? What can we do at home to support you?" rather than talk generally about "academic achievement".

[blackeyedsusan]

can he spell his name with say magnetic letters? is it just the forming of letters?

is it sitting still, falling off chairs, falling on the floor sort of behaviour?

dd is getting occupational therapy for hypermobile joints and some things sounded similar..(reading well/articulate.. missmatch in physical writing, cant sit still)

have you had his hearing checked? probably a bit obvious i know! glue ear and all that..

it is had work when you think there is something wrong, but not getting the help required.
good luck...

[Sops]

Sarahfreck, thanks for advice there. Our senco didnt really seem to be very proactive, and kept making (im sure very well meaning) comments about how we mustn't compare ds to his peers because all children develop at different rates (if we don't compare children to their peers I don't see how any sn would ever be identified...)
Im sure his teacher thinks there is def sn at the root of all this it was her idea to get senco involved in the first place. she has told us many times since that although there is nothing school can do we must continue to seek professional assessment for him via healthcare services. It seemed ant the meeting that only senco, who's never met him thought there wasn't.

Adela, So an IEP is only used when there is a diagnosis of sn?

BlackeyedSusan, He can spell well using a keyboard, he likes to use the iPad to search argos for toys! He can easily spell spiderman, Lego ninjago and Indian (gets stuck there for Indiana jones) etc. But when he wrote spider the other day you could just make out the s, that's it.
The sitting still is that he seems to need to get down from the table frequently, like he has ants in his pants. Carpet time is a major problem for them in school.

[AdelaofBlois]

IEPs called that tend to be used only for SN cases. No reason why they should given what they are, but the two are strongly linked, and grew out of similar reforms to practice.

The point is, that what you want is a recognition of the problem, a series of suggestions on how your DS might be helped, and a way of monitoring progress. That needs to be, as someone else said, based on specific targets for specific things. Basically it's an IEP but, I fear, calling it that reintroduces SN and puts up roadblocks. So, maybe, don't?

He has problems, school and you think that. They owe it to him to offer help dealing with them, can do so more effectively if the talk to you, and owe it to you to say how they are going to deal with them. They owe you that regardless of whether there is an SN diagnosis, and I still feel everyone (including some on this thread) involved has lost sight of that-dealing with a child with behavioural issues that set them apart is part of a duty of care to that child, it doesn't get turned on only if an SN button is pressed.

[Sops]

Adela: "The point is, that what you want is a recognition of the problem, a series of suggestions on how your DS might be helped, and a way of monitoring progress. That needs to be, as someone else said, based on specific targets for specific things. Basically it's an IEP but, I fear, calling it that reintroduces SN and puts up roadblocks. So, maybe, don't?"
You are quite right there, and I shall heed the advice.
I guess the thing is that regardless of any sn, we do need to do something to help prepare him for year 1. We think it would be irresponsible of us to just hope things will get better by themselves, we've already been waiting for two years for him to grow out of this but he only gets worse as time goes by.
The issues we have in terms of demand avoidance make it very difficult, to practice skills like reading and writing at home, he absolutely refuses to read his school books at home (even though before school he was always been an avid book lover) and he won't write either.
In terms of helping him with sitting still and following instructions we have completely run out of ideas. All the conventional behavioural techniques have either not worked or even made things much worse. They have worked fine on our dd (7) so that made us wonder why ds is so different. When we discovered pda we reduced the number of demands and started asking indirectly, this has made a real difference- yesterday he even said goodbye to his cousin, we nearly fell over in surprise!

[Ben10isthespawnofthedevil]

Sops, Have you got a wobble cushion/move and sit cushion for him. My son has poor proprioception (knowing where he is in space) so moves all the time to get the sensory feedback. Also are his feet supported on the floor properly? Both of these should help with reducing the amount of fidgeting.

Also a writing slope can help him get his hand in the right position for writing.

[Ben10isthespawnofthedevil]

Another thought......would he do writing about something he likes ie ninjajo? DS likes to write lists so you could maybe get him some "special" notebooks for writing down all of the characters in Ninjajo from the Argos catalogue (are there different characters?). This gets him writing but about the things he likes doing outside school.

[sarahfreck]

Could you turn writing/spelling into games? Write a word to put down a 0 or X in noughts and crosses. That sort of thing. Still might not work with PDA ( prob insist on only playing ordinary 0 and X?) but you could offer it as an option? Or make up your own writing games ( adapt things like bingo) that can only be played by writing. What about using bath crayons in the bath? you could do 0 and X, but alter it to use 2 letters that he is not able to write well?

[Sops]

Thanks for the ideas ben10, I'll look into the wobble cushion, thanks.
I have tried the ninjago idea with reading. I got loads of great pics off the website, made a very short book using only words that I know he can easily read, but even then he would not read it. He uses all sorts of techniques to avoid compliance no matter how interesting, fun and exciting i endeavour to make it. he'll say he's too tired, his eyes don't work, it's too hard (it really, really isn't) lie on the floor and roll around, look anywhere on the page but at the words, sound them out incorrectly, sound out words that aren't there (I.d.o.n.o.t.w.a.n.t.t.o.r.e.a.d.t.h.I.s.) on and on and on. I have given up completely now because I worry that pressing it any further will be totally counterproductive.
I occasionally suggest writing in an off hand casual manner and he just ignores me. I have wasted a lot of money of various 'special/fun/exciting' writing materials to no avail. I content myself with leaving pens and paper out and hoping that he will use them. He has made some progress because now he will now draw robots (almost nothing else) so that's something, even if it is the kind of thing that most 3 yr olds produce.
He has just made me laugh as he complained to me that someone was on the swing he wanted to go on (we are at the park) I said "theres lots of other things to play on, it's not the end of the world" he said "actually mummy it is, cos I heard it on the news the other day", I explained that the 'rapture' didn't quite turn out as some had predicted.

[AdelaofBlois]

Sounds like a bright kid. There are two other things you might (and maybe have) try that could help. First, rather than guess interest, try limiting choices but providing many: i.e here are lots of books, which shall we read? This might also include leaving a lot more out (the pens stuff seems to have worked) even if your house gets very untidy. Second, roleplay where he is teaching might be effective (there is a similar child in our Yr5-very reluctant to do what is asked, but his parent shave discovered he will do it in the context of teaching them or a younger sibling).

As I said, you've probably done all this, but knowing what works and doesn't will help both school and paed.

Finally, talk to the school, but perhaps don't stress too much about Yr1. One of the joys of teaching Yr1 is how fast kids develop, but they do not start at 'sit down be talked to' levels. First term is often much more like reception in many ways. You may find, given the timing, that the best bet is to establish early contact with the Yr1 teacher so that early intervention can take place there, not fret about getting him to what may be a somewhat mythical standard over the summer.

[Sops]

We definitely have tried everything with books, we have thousands- everywhere!
I did try the teacher type role play a while back, but I will give it another whirl. I know teacher role play is common with PDA, ds however, likes to pretend to be a baby. When I asked him why he said without hesitation 'because babies don't have to do what they're told' and I guess babies don't actually have to do anything do they? Ds will passively allow you to dress him for example as long as you don't say, now get your clothes on now, or tell him to do it himself. It's as though he doesn't object to the action required just the fact that you're asking him to do it.
The year 1 issue worries me precisely because at our school it doesn't seem to be like foundation at all. The classroom is a third the size of reception, theyre expected to sit at a named place, and do lots of 'desk work'. When dd's class started last year a lot of the children struggled with the change, all the mums were saying how much trouble they were having getting them to go at all! This was especially true for the boys.

[Ben10isthespawnofthedevil]

Our experience of y1 was as you describe Sops.

In reception, the only thing that was mentioned is that he rolled around on the carpet - we had no idea at the time that he had any SN. In Y1, he was suddenly "the naughty boy". He has a June birthday so one of the younger ones plus being dyspraxic and prob AS, he is socially and physicaly immature as well so the change to more formal learning and having to sit down a lot of the time (whether on chairs or the carpet) was really difficult for him. I do think that you are right to be concerned TBH given that you already know the school and have tried so many different interventions yourself.

[Sops]

Sarahfreck, he wont play games really, especially if they have even the slightest educational slant- he spots that a mile off! The master-manipulater will not allow himself to be manipulated. He will play slap-a-jack and sometimes if in the right mood we might manage a quick snakes and ladders, if dd and i start it off. What strategies did you employ for pda at school?
Thanks ben10, the teacher keeps mentioning the carpet problem, in a kind of shrugging her head, what can you do kind of way- not terribly helpful.
I'd like to take some sort of action now even if it is just to give me a focus while we wait for assessment. I think I might have the opportunity to re-ignite ds interests (which have all been dropped since starting school ) and therefore his learning over the summer hols when we can let him lead the way.

[sarahfreck]

It was very tricky Sops. Trying to build educational opportunities round the latest things he was obsessed by helped a bit. He was also into reading so you could give him a pile of books to choose from.

[Sops]

Hmmmm, ds had tons of interests before school; hyaenas, Komodo dragons, big cats, sharks, ancient Egyptians & mummies, myths and legends, really any kind of dangerous animal and anything from the past. Since starting school he has lost interest in all that kind of stuff as well as in books generally (not completely but significantly less than before) and where he was full of questions and had a real thirst for information he now prefers to play Lego by himself
Before he started school we used the jolly phonics books and he learnt all his sounds and could blend simple words no problem, but now he won't even contemplate reading words with us.
He did return to himself over the Easter hols and it was so nice to 'have him back'. That's why I'd like to have a plan of action for the summer as ironically I think he will be able to learn more in those 6 weeks than he has done over the last two and a half terms!