As things stand……

Not so long ago we had a 6 week review meeting at school which consisted of myself, headteacher, class teacher, school senco woman, a woman from Local authority (educational something or other!) and the boss woman of the pupil referral unit, the meeting was brought forward as an emergency measure because the headteacher felt things were getting out of control, my DS2 had been in mainstream for all of 5 weeks and in that time been excluded 4 times, two out of the four were full day exclusions and two were two day exclusions, the one full day exclusions were for refusal to do work, being disruptive, running and spinning everywhere, refusal to line up and sit in Assembly, being aggressively rude to teachers(especially his one to one TA) and being constantly angry. The school had come up with a three dot system where there would be three dots placed on the board in class, once my DS2 had lost all his dots for any of the above behaviours he would then be sent to the headteachers office where again she would put three dots on the whiteboard while he was expected to sit in her room and work in silence while sitting still, if he lost those three dots then he would be sent home, i knew it wouldn’t work when i was first informed of this system but it was too late for any input from me because the school had already been using the three dots for a number of days before i was informed of it (which annoyed me!) The two occasions i had the call to go pick my boy up from using this method i was told that his behaviour was affecting others in his class because of his un-predictability his peers were becoming frightened and confused at my sons outbursts and disruption’s and while i fully understand this by way of my boys behaviour affecting others well-being and learning i couldn’t help being made to feel responsible for it, ashamed even. But was it un-reasonable for me to question the welfare of my son in all this? i thought not anyway and i told the head that by sending him home for these behaviours it is only reinforcing the “get out of jail free card” because i have real problems getting my DS2 to leave the house for anything, he has always been a home bird and if i let him he would never leave the house! In my eyes he was learning that he got sent home(which is where he wants to be) for loosing the dots which in his eyes was not a punishment at all, that’s exactly what he wanted! which proved it as when we walked towards the car he remarked “least I wont have to do any work now, they are the loser’s because i get to go home” (little did he know i would be making him do some school work at home to try get that idea out of his head!) being as manipulative as he was he had used their own system against them and got what he wanted!

 The head explained that they had no choice but send him home and that they were sorry but they just could not get through to him, he follows his own agenda, shows no emotion apart from anger & frustration, he lashes out because he says everyone is taking the mick out of him (when apparently they aren’t its just the way he perceives it to be as he cannot see things from other people points of view, he knows what he wants and what he thinks but cannot judge that of others) she said he shows no empathy or remorse and has the same expression on his face weather he is being shouted at or praised so therefore nothing worked with him, I said he had been frustrated at not having a friend yet as that is what he wanted most from returning to mainstream, and was assured that every measure had been taken to try pair him up with suitable peer friends and encourage a bond etc but my boy was not interested and just would not interact and spent play-times running backwards and forwards, she expressed that she was concerned also that my boy was not achieving even though we all know he is quite capable of doing so he just refused to do anything..(I secretly thought welcome to my world!)

The other two exclusions were more serious so required a two day exclusion, the first was because of several incidents that happened in the space of three hours… he had refused to do any work at all, kept absconding to the toilets and climbing over the tops of them breaking the holders and damaging the walls, then he had attacked several children but fought and argued that it wasn’t his fault because he was spinning/running/jumping round (he still insists it was the other child’s fault for invading his space while he was bouncing round) which triggered an outburst as he would not accept responsibility for hurting anyone and insisted it was all their fault and he had done nothing wrong, he became aggressive and had to be restrained by two members of staff and taken to the nurses room to be sent home. The second exclusion was due to the same scenario except this time he threatened to harm himself if people (teachers) wouldn’t leave him alone, he also threatened to harm them (teachers) and apparently the teachers said they had found my boy in the cloak room with the straps of his P.E bag around his neck but still on the peg and he was leaning forwards. After hearing what had gone on  and exactly what my son had said (they wrote it all down) i knew straight away exactly where he had got those phrases (the night before he heard a conversation his big brother was having with one of his friends about some comedy film where they were mimicking the phrases, i wouldn’t mind but at the time i knew that because my DS2 had heard my DS1 i knew that i would be hearing that repeated again one day soon but only next time it would be coming from the mouth of my 9 year old son who had no concept of what it actually meant, and i admit to having stern words with my DS1 over watching what he says in front of his little brother because he repeats them)…anyway I am trying not to lose my train of thought here.. I tried to assure the head teacher that it was something that my son had heard and was repeating without an understanding of what it actually meant, she did not seem impressed with my explanation and from where i was standing they were in panic mode as the head admitted to me that they had never had anyone like my son at their school before and that now things were hitting crisis point because they didn’t know what to do about the risk he was posing, she said to me that no one knows how serious my son actually is when he makes these threats because of the level of no fear, no sense of danger and no awareness of boundaries they were worried that one day he may just push things too far without intending to, I agreed that this was a big worry but also that i could read my son and i knew the difference, he was lashing out because he was angry at something, he is very good with words and manipulation and often says shocking things for the reaction to divert your attention away from the original argument. I asked about the P.E bag incident and was told he did this after he had calmed down and decided he wanted to go talk to the girls, I asked if he was calm or angry when he had done this and was told he was definitely calm (which only served to panic them even more!) so i said there would be another explanation and i firmly believed that he was NOT trying to kill himself which is what they were flapping about, (I later found out from my DS2 that he did do what they said he was doing but he wasn’t doing it to try hurt himself, I’m not at all sure what to think of this if I’m totally honest but it does worry me a great deal when i think to myself “what if they were right & i am wrong”) The head teacher said that in her opinion her school could not cater for a child like mine and he needed un-picking to get to the bottom of why he was like that, she said there was definitely emotional, social and sensory issues present and she even gave me the name of a specialist school that would be more suited to him to look into, she said that at the up-coming meeting i would have a chance to put all my ideas and opinions forward because at the end of the day he was my child and i didn’t have to go along with whatever was said, i felt like she was giving me an indirect hint that the meeting was an important one where i could make things happen, i got the feeling she would be behind me and that’s what i needed, someone to back me up and agree with me…..at last!

So at the emergency review meeting it was said by the head that the school are struggling to cope as no strategies were working with my son, that concerns had to be raised on the affect my son’s behaviour was having on his peers as they were not used to a child like mine and were all in shock, she stated that my son was not achieving, showed no remorse or empathy and refused to work and that 4 exclusions in five weeks were a huge cause for concern and as a school they were unsure if they could cater for my son, the LA woman said they would be no more funding available for extra hours of one to one as he was already getting 25 hours a week.

When it was my turn to speak i expressed my concerns over being sent home with a view to my boy seeing this as a way to purposely get sent home when he felt like it because that’s where he wanted to be, I was met with an answer from his class teacher who said that my son always shouted and screamed that NO HE WAS NOT BEING SENT HOME and that she disagreed with me because he argued his side at not wanting them to ring me and not wanting to be sent home. This got my back up a little because this insinuated that there was a reason why my son must not want to be at home(maybe it’s just me on the defensive again or maybe its just the way she said it, i don’t know but it got my blood boiling!) i know my son and i know exactly what tactics he uses, I tried to explain that yes he will say those things because in his eyes you are telling him he has to go home, as an order/demand, it has to his decision not yours, he is clever and can easily manipulate any situation given the opportunity to do so, trust me Ive seen it every day for too many years to count.

I stated that i thought that since we had tried everything their way for years it was time to start looking into WHY he behaves the way he does and stopped trying to make him conform into someone that he was obviously not going to be, i reeled off all his symptoms and said i wanted another assessment doing, specifically for Pathological Demand Avoidance as he had been screened previously for ADHD  and did not fit the full criteria, I said i wanted a full assessment of ASD,on the faces of the “professionals” were smarmy smirks which i thought was quite rude of them and also got my back up as they started to shake their heads and widen their eyes, the woman from the LA asked me if it was in view of some sort of diagnosis to which i said yes obviously, she then said that my son was very complex and while he shows a lot of autistic traits it didn’t mean he was actually autistic and what difference would a diagnosis mean because he would still be the same, a diagnosis wont solve anything it will only label him! (did this woman seriously think i was that naive to think that his problems would all disappear with a formal diagnosis or what! omg!) I replied that no i was fully aware that it wouldn’t solve his problems but what it will do is either eliminate asd/pda as a possibility or open doors to get my boy the help & support he needs to stay in mainstream school and actually achieve, it will allow us to access support not only on a school level but at home too as we desperately needed it, i needed answers as to why he behaved the way he did when i had another son who did not display the same behaviours yet they were both brought up in the same way, she stated that there was no other help or support and we were already receiving it, he had a statement, a one to one and that was it we already had everything so an assessment wouldn’t bring anything else, she said my son was a high end learner and that meant she had others more deserving of the funds available, my son couldn’t possibly be on the spectrum because he was a high end learner, i asked her to explain what she meant by a “high end learner” and she replied with he CAN do the work he has shown he can do it to a good standard, but he REFUSES to do it and will find every excuse not to do what is asked of him, its his behaviour that stops him from achieving and not a disability”

Confused i still pushed for it, even ask for a review and update of his statement because his situation since receiving one had changed, he got assessed for the statement whilst being at the pupil referral unit and not in mainstream school and i argued that there was a huge difference between the two environments and that it should be obvious that after transition to mainstream his needs will have changed from what they were, going from a tiny class of 5 pupils of varying ages and three teachers to a large class of 31 peers of same age with one teacher and one TA, the school senco agreed that this would be a good idea.

It was proposed that my son would spend three days a week at mainstream school and would spend the other two back at the pupil referral unit, (note that the school and the pru are in two different towns, which meant more disruption, more uncertainty, more changes, more anxiety) the head picked up on my worries and expressed her concerns that this would only serve him to be even more anxious because of the constant changes and the build up on his anxiety at school the day before he knew he would be going to the pru, I said i didn’t want this and was unhappy about him being sent back to the pru unit as i didn’t think it was suitable for him, the LA woman said i had to submit my view of this in writing (which I have done now).

They finally agreed to authorise a referral for assessment and would refer to CAMHS, get SALT on board and also open a CAF, Grateful i agreed to meet them halfway and comply with the two days at the pru for a fixed period of 5 weeks until the next review. I was satisfied i had got somewhere with this meeting but concerned at the same time as my eyes had been opened to the emphasis on how it all basically always came down to funding, I felt they had tried to talk me down from pushing for an assessment and i wondered why this was, didn’t they want answers too or would they be happier coasting along “trying” to contain my sons behaviour and “trying” force him to conform?

I was invited into school the next day to fill put the CAF forms,it was just myself, the school senco and my boys class teacher, i wasn’t even fully aware what a CAF form would do and how it will help but i was surprised because i was expecting to have to put up another fight with regards to what was being put on the forms, instead the school senco wrote absolutely everything i said down word for word sometimes adding their own input but always discussing it first, I found them both agreeing 100% to all the behaviours, quirks, triggers and worries that i talked about, it was interesting to find out that my son always undermined his one to one and would walk straight past her, ignore her and provoke her and he always seek-ed out the class teacher instead, unless it was a Friday when the class had a totally different teacher and then he would be extremely disruptive and angry to the point where he would be removed from the class, was they starting to see what i could see, finally?

I still feel confused about the whole process and not sure what is meant to happen next, I had my initial meeting with CAMHS this week where i told them what had gone on at the meeting, what my concerns were, i think (I’m not sure) that they observed my sons behaviour whilst we was there and typically he was quite well behaved and only showed a little of his spinning behaviour and kept interrupting but that was it, we were only there around 30 Min’s. They (there was two women) said the referral had been flagged because of his threats to harm himself and others and after my explanation of how he repeats things he hears etc they were satisfied that he was not a risk because there was a lack of emotional understanding behind the threats he made whilst at school and all they could do at this point was to write to school stating that they found my son to be no risk to himself and they said there would be no harm in “treating” my son like he already had a diagnosis of either asd/pda because the assessment process waiting list is a year long, they said there would be nothing more they could do until he had been through the process and got an answer either way. It was a bitter sweet meeting, finally people were starting to listen and see after six years of battling with every professional id ever come into contact with only to be told i would still have to wait another year, in a year my boy will be approaching the transition to senior school, what then?

I have made some enquiries about being assessed privately (which is very costly indeed but I’m prepared to do anything that will save and gain precious time which could be better spent supporting my son by knowing what I’m dealing with) but every enquiry i have made seems VERY against this as an option, apparently it HAS to be an NHS assessment for it to be recognised by the schools, the local authority, the professionals and to be able to access any kind of support, surely this cant be so?

 really?…..