Another bad morning... (whinge warning)

[popgoestheweezel]

After quite a prolonged period of stability in ds' behaviour he has had a really bad few days.
Yesterday he twice tried to strangle me (because we don't own the kind of tank top he wanted to wear to school). Today he has thrown stuff all over the place, tried to wind dd up, and drawn biro all over the back of her blouse (while she was wearing it) and just been generally challenging.
We strongly suspect Pathological demand avoidance. He has been seen by the paed who said PDA looked likely and has referred him on to CAMHS but that will take forever (and we have no guarantee of a diagnosis then or indeed ever). It's already been 7 months since we were first referred.
In the meantime, although his teachers all acknowledge his issues with anger management, sitting still, following instructions and emotional outbursts, they don't seem motivated to actually do anything much. We have told school about the paed appt and given them information on PDA but they seem completely uninterested and dismissed a suggestion that we might have a meeting about it. However, I have now found out from another parent that ds (and a few others) are having regular sessions with the senco. Apparently this has been going on for a while.
In a way I am pleased about that, although surprised that they didn't mention it, especially as they have has many opportunities to do so.
However, I do have reservations. Number 1, the senco is not a particularly nice woman. When we had a meeting at his reception teacher's suggestion with the head and senco last year she laughed at us when we mentioned PDA and our (and his class teacher's) concerns were dismissed. What kind of senco laughs (literally in the face) of parents who come to them with concerns about their child?
Secondly, when I've asked ds what they do in these sessions he says 'she keeps asking me to draw pictures of dinosaurs'. What exactly is this supposed to achieve?
Dh thinks that the motivation here is get the 'naughty kids' out of the class for a while so the other children can get on with some proper learning. His worry is that ds is missing out on the 3 Rs as he also attends a weekly outdoor learning session (apparently to improve self esteem and behaviour). I have volunteered on this and they basically collect leaves or look for bugs every week- all very lovely, but what's it going to achieve in terms of improving his behaviour? He stands out as by far the most challenging child in these sessions and spends most of the time either getting totally over-excited or stropping/sulking/crying over something/nothing. I don't see how he can be learning when he is in either of those modes.
He has made only limited progress at school. Reception teacher said he was 'very bright, very articulate and one of the better readers' but in yr1 they just say 'there's nothing to worry about' academically.
Because of our concerns we are virtually home-educating him. We spend loads and loads of time putting opportunities to learn in his way (in the most roundabout PDA type way) and he is making some progress in reading and writing. My worry with this is that school will think they are doing a great job- when actually they're doing f* all that actually helps him!
Dd is having a hard time at the moment too, her behaviour (usually excellent) has recently gone downhill and I think it's just to get attention. Work is pretty stressful for dh and for me too right now and I just feel like I'm making a very bad job of everything. We are doing our best to cope but both of us feel totally let down and unsupported by school as they won't enter into a dialogue with us but don't know what to do about it.

Dd has just come down crying to me. She says she doesn't want to go to school tomorrow because she doesn't want to see or hear her brother. She says that he is always falling out with the children in his class and then he comes to her and says it's her fault and shouts at her and hits her.
I know how she feels cos he does it to me too.

Two things..........Big Hugs for a very frustrating day and does he have a statement. If yes check he is having what is required on it and I suspect one of them will be regular meetings to update parents and talk about IEPs.

If not...........apply for one yourself. If they agree to assess then that will at least get an Ed Psych in to assess him and his needs and put in suggestions that the school should be doing.

Has he been seen by camhs? or are you waiting for a date. If so nag the hell out of the Pead. If you have a date and its to long off ring and ring the number every time you have an issue with your DS till they are sick o hearing your name.

You are having a hard time so give them one xxx

There is no statement and I am sure that school would not be supportive if I even mentioned it. We don't have a scrap of evidence that school cannot meet his needs as they don't really acknowledge he has any.
They say to us that although his behaviour is an issue they think he'll grow out of it. However, we know that he hasn't matured at all in the problem areas over the last 3 years so don't see it as a particularly realistic prospect.
He has only just seen the paed so I know it will be 6 weeks before we even get a letter to confirm that they have accepted him onto the list for CAMHS. Even then, I know that PDA isn't widely diagnosed so the possibility of us getting it identified are quite remote.
He is not in any way 'conventionally' on the autistic spectrum and tends to be quite compliant in novel situations so the chances of him displaying PDA behaviour in an assessment are extremely low. So in a way I'm not in that much of a rush because I fear we will be dismissed at that stage. At the moment, we have an acknowledgment that further investigation is required and the paed's opinion that from what I told him it looks highly like PDA. I feel that potentially we are in the strongest position now to ask school to act but i don't know how they should.

Diary............Put everything down in it. His day at school and how he was when he got home. How you handled it and the end result.

ANYTHING the teacher/ta states was an issue....write it down in the diary log. Make a point of asking them every day how his day has been.

You can form a pattern of events yourself to take to proffessionals to help them and to photocopy and send with your own application for a statement if you feel he needs one.

It will at least give you some sort of element of control and something to do whilst you are waiting for your camhs appointment. :)

I tried to do a diary once but I am actually writing almost constantly- I am not even joking! His PDA displays itself everywhere once you know what you're looking for.
I gave the paed 12 pgs of notes including 4 pgs of typical interactions so they do have plenty of data to be going on with. i could write a whopping book of all his PDAisms!
I can't bear to ask them everyday how he has got on, they normally say 'fine' but then he will tell me about loads of things that upset him, falling out with friends and dd will say I saw ds at school today he was really sad/cross/crying/angry and I'll wonder what they mean by 'fine'
We had a home/school diary in reception but they only wrote in it about 3 times.