Can they do this?….

Today has been the worst yet!….

Please forgive me if my babble makes no sense but I myself am trying to make sense of the situation and try figure out what i do next.

So today my son went to mainstream school as arranged at the last meeting, three days at mainstream and two days at the pupil referral unit, This morning started off surprisingly quite well considering how hard it can be sometimes and my son got ready and went to school without a fight or an argument, I thought it could possibly be a sign of having one of those elusive good days but how wrong i was!….

At 1pm I received a call from my son’s mainstream school to go pick him up for bad behaviour….the school is in the next town and takes a good 25mins to drive to and when i was half way there they rang again asking if I was on my way yet.

Upon arriving the head teacher called me through and said that my son had trashed the classroom and had been disruptive all morning, and he would be excluded for 5 days but HAD to spend this exclusion time at the pupil referral unit where I must take him straight away, she handed me an exclusion letter and said that he was being physically restrained in the nurses room at that moment and I NEEDED to take him straight from there to the pru wearing no shoes, no jumper,no coat and no lunch box and that he had been refused to be allowed to have his lunch but the one to one TA assigned to my son would meet him and myself at the pru with the rest of his things.

I did not argue or question as it was obvious they wanted me in and out as fast as possible, the only thing I did say was that if my son was distressed I would allow him to calm down before taking him straight to the pru which was met with “I think your priority should be getting him straight up there”…(No regards for the fact that distance and time was not realistic and would affect my ability to collect my oldest child from school! what was I a bleeding yoyo?)

I went into the nurses room where two staff were restraining my son who was visibly distressed and fighting to be set free, I took charge and said it was ok to let go of him and I would handle him from here, He instantly stopped struggling and took my hand and cried that they (assuming teachers) wouldn’t give him his lunch.

I opened the exclusion letter once I was in the car and it stated this word for word….

This is a fixed term exclusion of 5 days commencing Monday afternoon 18th June, This is following several incidents this morning where he, among other things, was trying to prevent children from going to the toilets, throwing water around the toilets, launching board rubbers and other resources through the air in class and trying to pull the desk drawers out on the class teachers legs.

He will be expected to attend the PRU this afternoon and for the rest of the week.

I had questions, I wanted to know what had triggered this behaviour, what had started it and what the “among other things” meant, I wanted to know how he was preventing children from going to the toilet and for what reason was he there un-supervised, I wanted a better explanation of a 5 day exclusion and I knew I was not going to get it, I was frustrated at the lack of communication and the need to keep sending my son to the pru unit which was doing him no favours at all.

I took my son home, allowed him to calm down for a while and tried to ring the head teacher, I wanted to know where we stood as in the last meeting she tried to express in the nicest way possible to the LA that her school could not cater for my son but they would not listen and I got the feeling that she was a little peeved that the LA are making them comply to having my son attend at their school even on a basis of three days a week, I feel that she is now expressing this by sending my son back to the PRU at every given opportunity while she knows how I feel about that, It feels like she has given up trying to work with me and instead wanted rid of us both, I rang the school to speak with her, my intention being to ask if she could be honest with me and just tell me if she was still of the opinion that her school could not cater for my son and that she still thought he would be suited to a school with more specialist previsions, and if so I would be prepared to work with her to find a suitable school if she no longer wanted him on her “precious roll” I had to have her back me up because the PRU have been quite clear on their opinion that my son does not have special needs, he does not need any extra help, all his behaviours are “learnt behaviours” attention seeking and down to “parenting skills” so therefore I was not going to get the support of the PRU in trying to get my son into a more specialist school, I needed her support because she has seen things through my eyes and agreed with me that the underlying causes for the behaviours need to be addressed rather that trying and failing to treat his symptoms without fully knowing exactly what were dealing with, she has been THE only person ever to agree with me to this extent and I could not understand why all of a sudden she seemed so unapproachable, cold and unwilling, I wanted to ask her to lay the cards on the table and help me to help my son.

Typically the receptionist said the head teacher was in a meeting but would pass my message on!……

So I rang the PRU unit and told them that I was not prepared to bring my son in until he had calmed down as he was too distressed, they said that he needed to be there to give me a break from it, that I was giving him what he wanted, that I was allowing him to manipulate me, I told them they were wrong and i knew that my son needed time to calm down, they then asked where I was so they could come pick him up!…(the cheek of it!) How i kept my cool I have no idea,they insisted that he had to be marked down as being there and the authorities would become involved if I did not co-operate. I knew what was best and I was not allowing them to manipulate me, they were trying to do what they were accusing my son of doing and I refused to back down on this, I said I would take him there within the hour once he had calmed down and they would have to accept that, again they asked where abouts I was, if I was at home or not, I said he would be there when he was ready.

I explained to my son that he would be going to the PRU because of his behaviour at mainstream, He did not like it one bit and became distressed again, begging and pleading and crying real tears (which is not often seen in my boy at all, I very rarely see him cry for anything)…He complained of having a bad tummy ache but still I took him, On the drive there his tummy ache became visibly painful  and he could not even sit up straight I knew it was real as I have seen it many times, he gets these bad tummy ache’s when he is anxious, Once parked up my son proceeded to throw up outside the car. I hated doing this, surely this was not right, My son was pale, shaking, crying, bent over double in pain and begging me not to take him in because he was scared, I did not want to but felt I had no choice because I had been backed into a corner without being allowed to have an opinion on how my own son was treated, My instinct was to take him straight back home and stick to my guns on the PRU not being suitable but to be honest I didn’t know what to do or how to deal with it, no one was listening to how I saw things, to how the well-being of my son was being overlooked because of grudges being held over his behaviour, if no one has managed to make him “conform” in 9 years then why are they still trying when it’s obviously not working.

Anyway I pressed the buzzer of the PRU while my son was crouched on the floor, I took him by the hand as one of the teachers opened the door and quick as a flash the teacher SNACTHED yes SNACTHED his hand from mine and marched him straight into the isolation room, I told her he had just been sick and she did not even look at me, she maintained her cross angry and hostile expression,shrugged her shoulders and said nothing! another teacher pulled me to one side and tried to tell me that children are often sick after they have had a tantrum and I shouldnt give in to this tactic, he would be fine and I had done the right thing taking him in, she said they would hold him until 5pm!!…WHAT?

Does anyone know if they have a right to treat my son like this?

I could hear my son being shouted at VERY loudly by the teacher who snatched him away from me and then I heard him screaming and crying, the teacher who was trying to convince me that all children who have tantrums can make themselves sick on purpose then pulled me outside into the car park saying that the noise I was hearing from the isolation room coming from my little boy was “him provoking a reaction from me because he knew I was there” that the crying was for my benefit!

Are these people for real or what?

Now I sit here confused and very VERY angry not knowing what to do, have I done the right thing? should I have done something more? what do I do now? IS MY SON OK?….

 

 

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?…..

 

 

Nightmare with Schools……….part 2

So…. Continuing from my last post.

I visited one of the two mainstream schools that I had been looking at and found suitable for my boy, after looking round the school then having a meeting with the head to discuss my many questions I agreed it would be a good choice of school, they had a place so I said I would like it and the next day my boy was invited to look around too. There was a few weeks left until term started again and the school said I would receive a letter of confirmation a few days before, I waited and waited and no letter arrived, all attempts to contact them by telephone failed and I started to get worried as I didnt know what type of uniform I should be getting, I had prepared my DS2 ready for it and we talked about it a lot, the day term time started came and went and still I heard nothing so I telephoned again knowing that they would definitely be someone there this time.

I was told that my boys place had been given to someone else and there were no longer a place available for him! as you can imagine I was livid, letting me know a lot sooner is the least they could have done, I expressed my annoyance at the situation but couldn’t do anything as it was already done, what a total waste of everyone’s time! It meant though that my son was missing school now so I arranged to see the second school I had chosen and luckily they had a place, the head teacher was really lovely and sat and listened to all that had gone on previously and the problems I had with my DS2’s behaviour, she asked to have his records from his last school sent over and said she would be in touch the very next day, true to her word the head teacher rang and said she wanted to help me although she had read his records of regular exclusions, disruptive behaviour and non-compliance she explained that she was not the type of person to give up on a child and she was prepared to offer my son a place on the condition that he completed a behaviour management programme at the local pupil referral unit, I agreed immediately as her attitude and straight forwardness appealed to me, at this point I didnt know what a pupil referral unit(pru) was but it had to be worth a try.

Here is where I will fast forward my journey a little, my DS2 ended up spending 18 months at the pru, my relationship with the teachers there started off really well but soon turned very rocky when they interfered and intruded on our personal everyday life, it seemed I could do no right and they pulled me for the stupidest of things, firstly it was because my two boys shared a bedroom (I had no choice here as the council wouldn’t allow me to have a house where they could each have a bedroom because they were both boys aged under 16) there wasnt a day they didnt grill me about it being inappropriate despite me telling them my arrangements at home were basically none of their business with regards to how many bedrooms I had! then it was allowing him to sit in the front seat of my car even though he was sat on a booster seat and at the correct height to be able to do so (bearing in mind he was then 8) they said I was breaking the law and would report me to the police if they saw him in the front of my car again, they grilled my son daily about this and shouted AT him for it despite me telling them it was my choice he sits in the front not his, he had to sit in the front otherwise he would just open the doors, take off his seatbelt and climb around whilst I was driving, he also carries an emergency epi-pen as he has some quite severe allergies to many things and goes into anaphylactic shock in an instant, I could reach him in the front if I had to and he had been known to suffer these allergic reactions whilst travelling in the car, timing is everything with anaphylactic shock and it is life threatening if not treated immediately. These are just two examples but they were many many more personal intrusions on our life that I felt was inappropriate.

If I continue about the pru unit I will be here all year writing about the incidents that have happened, the blame and accusations that have been thrown at me, the arrogant, patronising and matter of fact attitude and the deceptive ways they describe my DS2’s behaviours to other professionals and repeat again and again to my son that he is a child and we are the adults, lording stern authority over him every second of his day.

Fact is although his behaviour outwardly “seemed” to improve whilst at the pru it was ONLY whilst he was in this setting with one to one, in very small groups of 3 to 4 other children of varying ages and on his own in an isolation room! everyone with a bit of knowledge about special needs knows that  children will vent in one environment but not in another and it was very obvious to me that my son was bottling all his anxiety, frustration and anger whilst he was there as he was exploding every night at home and I believe that he does this at home because this is where he feels safe and able to do so, this tells me that the pru unit is not suitable for him unless he can find a way not to have to explode at home every night.

The transition back to mainstream with the support of a statement and a one to one TA was fast to say the least, I was glad for him to be out of the pru unit but worried about how swift it actually happened as my boy doesn’t respond very well to change and I specifically asked that it be a gradual process, their idea of this was two half day visits to mainstream and his one to one TA spent two half days at the pru, that was it.

Initially he seemed to be doing well, it was a rocky road to start with but we all agreed that it was all new and he needed time to settle in, the cracks began to show within a week and the head rang me to admit that they were struggling, we had a meeting to tweak a few things that were problems and we just hoped that he would settle given time, after all the battles to get my DS2 to  actually go to school were reduced , it were not so much a battle to get him to go, it’s the little things that most people don’t think of that are big battles in my house, the eating of breakfast, brushing of teeth, brushing hair, getting dressed and staying dressed! (then being delayed because he refuses to wear socks and refuses to take his inhalers and allergy meds!) asking him over and over and over again to do something to be met with hundreds of clever reasons (excuses) not to or being point-blank ignored, constantly avoiding all demands made of him, making his own rules up with him being the exception, his clever diversion tactics, his need to always be in control of everything and dominate every situation, to name just a few! all before we even leave the house. 

He wanted to go to school now and that was the most important thing, it was all the things in between that was an inconvenience to him.

Nightmare with Schools…..part 1

My DS2’S problems became more apparent to others when he started school with attachment issues, he needed constant support to make appropriate choices, prefered to work independently or in very small groups (that was when he actually DID any work!) feedback, reports and concerns expressed to me from his first school were… he finds it difficult to communicate appropriately & tends to get angry and growl, he finds it difficult to listen for more than a few minutes, has no sense of danger, confident but struggles with peer relationships,struggles to make friends, very impatient, aggressive and impulsive, very easily distracted, needs constant supervision,very independent but not at all organised, has very good imagination, he is hyperactive and defiant, he fidgets constantly and runs, climbs, spins and hides a lot, trigger times are lunch times and break times where he will run back and forth and prefer to play alone.

After several exclusions a caf was opened and i was refered to CAMHS who did two ADHD assessment observations and concluded that he did not fit the criteria for ADHD and closed the case, an educational psychologist did an obsevation and concluded that I do a parenting class, which I did up to level four of triple p and I have to say that I really enjoyed the courses and was enthusiastic to get started on all the positive parenting techniques I had learnt, needless to say they all failed miserably!…We was refered to a  school consultant/pediatrician of some sort(I don’t remember the actual professional name) via the school nurse who suggested that my boys eczema could be having a dramatic effect on his behaviour,this consultant would do a full assessment of my boys medical problems and behavioural problems and so I was told to go along to the appointment armed with a list of what those problems were, at the 30min appointment my boy behaved reasonably well apart from not being able to sit still or stop touching and interrupting the conversation every two seconds, tem mins into the appointment i had finished reading what I had written down about his behaviours and my concerns, the consultant looked over the top of his glasses and said “so are you telling me that you think he has autism?” and I responded with “I don’t know for sure, that is what I am trying to find out but I do believe he has spectrum traits that have been present all his life and which are having a huge impact on everyday life, every reward chart and behavioural management plan has failed and i know that something is not right”  he seemed put out or irritated by my answer and then proceeded to tell me that it sounded like I had written my list from the internet and that I shouldnt look to the internet on these matters… I couldn’t believe what I was hearing to be honest, What the hell was he trying to say? that I had made it all up! I told him that I had not “copied” ANYTHING from the internet and the notes I had written were my own and they were the truth, (bearing in mind this was long before I had researched spectrum disorders myself) he then asked me how my own mental health was and asked if had brought these “problems” on myself by isolating our self! I seriously could not believe how this rude man was making me feel, my efforts to try explain that the school was responsible for isolating him at school and until i got some help with dealing with his behaviours I wasnt comfortable taking my boy out to socialize much because not only was it a trigger which made his behaviour worse it always ended in massive tantrums, me being stressed and embarrassed and everyone staring (and having had quite a few horrible comments on previous attempts to go out in public I had lost my bottle…I was ashamed that I couldn’t control my own son!). The appointment went on for another few mins then the consultant said he would write a report saying he doesn’t think his medical illnesses has an impact on his behaviour and would recommend my DS2 for anger management counselling along with counselling for me to deal with my own feelings! what the hell! Why could he not see that I was frustrated at having to jump through all the hoops I had to get to this point and all because i was saying to them i needed some help. HELLO WERE NOT COPING AND IM ASKING FOR SOME HELP HERE.

In the meantime my DS2’s behaviour was becoming more dangerous by way of absconding from the school after I had taken him in, I would be walking down the road and hear my son screaming “mum wait” after me, this happened several times and each time I was the scape goat! the school’s head took it upon herself to accuse me of not actually taking him inside the school… the cheek! because of the early attachment issues we had been in a routine of me ALWAYS taking him into school and straight to a TA in a quiet room where they would chat and play before going into class and this had been going on for the best part of a year, but no they was having none of it, it was my fault even after pointing this out I was told that no one “recalled” me handing him over to a member of staff. This made me so angry and my trust in the school and teachers began to slip, My boy got yet another weeks exclusion this time for hurting other children,running around and being disruptive, it was agreed that he return the following week on a half day basis only, he would start at lunch time and finish at the normal time.

This seemed to be going ok for a while, my son was working independently in a separate small room with no windows(fewer distractions apparently!) isolated from his class and peers and under the supervision of whoever was available, this was difficult for me to accept because I felt this would do him more harm than good but i was assured it was the only way to clamp down on his behaviours whilst protecting my DS2 from himself as well as protecting others from him so I felt I had no choice but to do things their way and co-operate with how they wanted to deal with it, until I got a call one day to go pick him up, upon arrival I was asked into the heads office where she said she had to lay it all on the table and proceeded to tell me she simply didnt have the staff to cope with my son and they were not allowed to send pupils home without serious reason to do so, she asked me if I would voluntarily sign a form saying I was removing him from school that day and that it was completely my decision, at the time I thought it was a little odd but at this point I really had had enough of  how both myself and my son had been treated, I felt the finger always being pointed at me as I was regularly being asked “is everything ok at home?”  and how he behaves the way he does because I allow him to manipulate me and how it was down to a lack of discipline etc! so I just did it, I signed the damn form and got out of there before I said something I would live to regret.

This is however a shortened version of events of what happened, how i tried hard with every technique available from supernanny’s tricks of the trade to praise & rewards, consequence & sanctions, strict routines, distraction & diversion, providing plenty of activities and attention for good behaviours and ignoring the bad, everything had been tried tested and failed. Also shortened is how I fought with the school for three years to listen to me,to work with me,to be more sympathetic, to understand that I wanted the best for my child and I wanted to help him, I wanted to find out why he was behaving the way he was, I wanted to know why they were isolating him and what good that would do, I wanted prof and answers that I was not going to get. His class teacher was particularly unpleasant and seemed to take great pleasure in belittling and embarrassing me in front of other parents while she barked that is was all down to my parenting skills, or lack of them, and when I mentioned that I thought he had autistic traits that were consistent with his behaviour at home she basically laughed in my face and said what a load of rubbish the whole autism thing was, she said “he is just plain and simple naughty and out of control because you have allowed it to happen” I was mortified and as soon as I put in a complaint at being spoken to like that the school shut down all communication with me and every teacher was ordered not to engage in a conversation with me, i got a phone call saying i was only to speak with the head and the senco and when i asked if my complaint was being dealt with i was told that the class teachers version of the conversation were very different to what i said it had been, and perhaps i had taken what was said in the wrong context!!…BULLSHIT! (how i wish id have recorded that conversation now), everything went down hill from there and soon after i removed my son from this school, not that they put up any sort of fight.

Luckily it was a week before the six-week holidays which gave me a lot of thinking time to work out where I was going to go from here, I decided that i would not home school as that would only isolate him even more, he needed to mix with people his own age, and to be honest I wouldn’t know what I was doing if id tried!.. it was hard and took forever to get my DS2 to do the simplest of things so I couldn’t imagine trying to get him to co-operate with following the curriculum on top of everything else as well, besides this there was the point that my boy’s time at school (no matter how brief!) gave me the tiny break I needed to recharge my batteries and have a fog-less mind where I could function normally catching up on everything I couldn’t do whilst my son was with me. There is no dad on the scene(never has been) and I have no friends or family able to deal or cope with him so offers to give me a break was VERY scarce to say the least so i heavily relied on my boy going to school to give a break.

I needed to find another school………….. A BETTER school.

Pondering the early years!…

My journey started early, my son was a very demanding baby who would cry/scream for hours on end for no apparent reason and nothing at all would pacify him, he would wriggle and throw himself back when being held and physically fight to be put down and left alone, there were rarely any tears during his screaming episodes and the only way i can describe them would be that they were temper tantrums born of anger and frustration of god knows what! his face would go bright red and he would often pass out from holding his breath. I expressed my concerns frequently to my gp and to the health visitor as there were no obvious reasons for my son to be like he was, my concerns were met with comments like.. “it’s normal, he will grow out of it, some babies just are screamers” and my favourite “maybe you have the baby blue’s”! so i carried on regardless.

I found ways to soothe him through trial and error, he liked to be wrapped tightly in a blanket and rocked in his pram but not held tightly and rocked in my arms, he liked the sound of the vacuum cleaner which i used frequently to soothe and calm him, sometimes leaving it running on its own in the corner of the room for over an hour! (bet my neighbours loved me for that one!) and he also loved being in the car so i spent a lot of time driving around going nowhere in particular dreading red traffic lights and junctions because if i had to stop he would go back to screaming, these journeys could last hours. The only times he would allow himself to be held was when he couldn’t see me, i learnt to do all the house work one-handed with my boy being held on my hip with the other, although he still demanded my full attention and i would not allow anything else to gain my full attention, this was also true with other people if i had visitors or even talking on the telephone, he always had to have my full attention in every situation.

Apart from the above which are realistically probably true of most babies my son seemed to develop normally, at 9 & half months he was walking and seemed to skip the crawling stage all together which was surprising to say the least, he did kind of shimmy around or roll, if there was something he wanted to get to he would find a way and not give up until he had but certainly not by crawling, he was definitely a determined fighter…a trait I’ve had daily battles with ever since!

It was around this time he developed quite severe eczema where he needed to be wet wrapped and creamed several times a day, again the gp & specialist said he would grow out of it, now i had an excuse for his temper tantrums and angry screaming episodes…. it cannot have been nice let alone comfortable having to be permanently wrapped in bandages and have them painfully changed regularly and to have cream applied several times a day, i understood how frustrating and uncomfortable this must have been for him and i guess this was the point where i decided that his bad temper, need for control, demanding of attention and quirky self soothing behaviours were all a direct result of his irritation and frustration from suffering from severe eczema so that’s the “excuse” i gave to myself and others to justify his behaviour for at least a few years to come.

By age two things had not changed much except the intensity of the tantrums and demands, he had developed an obssesive interest in anything fluffy, teddies, cushions, and especially a fluffy fleecy blanket he named his “cuddle” this HAD to be in his sight at ALL times ready to be wrapped tightly round himself , also his dummies (dudes, as he named them) he always HAD to have two, one for each hand so he could squeeze the teat between his fingers and thumbs, he would throw a fit and be in full-blown panic mode which would last for hours if he could not see or find his two dudes and his cuddle.

This is also the stage where he discovered spinning around and round for what seemed like for ever, if he wasnt spinning around he was running back and forth from room to room, he ran everywhere, walking wasnt an option any more no matter what i said! my boy would NOT sit still! he would have made Houdini proud the escape artist he became at wriggling his way out of his car seat and pushchair, his dare-devil stunts of continuous climbing on whatever he could before throwing himself off the highest place he could find, he was dangerous because he had no fear and no sense of danger at all, he was hyper, feral, impulsive and oblivious to the worry and concern he was causing me with regards to hurting himself no matter how many times i tried to tell him how dangerous things was he still went ahead and did them… Once he climbed up on top of a bunk bed and then on top of the open door and proceeded to launch himself face first on to the floor!… imagine my absolute horror as i heard him scream and ran to find him with a bloody nose and busted lip, eyes glistening not with pain or shock but with excitement as he climbed up as fast as he could and attempted to do the same thing again!

He didn’t care for the damage he had caused himself, wouldn’t even let me see to him because all he wanted was to keep doing it again and again and he could not understand why i was not letting him, this was just one of the incidents that made me question his ability to feel pain, i came to the conclusion that he had a high pain threshold due to suffering the pain of severe eczema and swiftly got rid of the bunk beds!….Another time he would repeatedly touch or grab a lit table lamp’s bulb, not seeming to care that it burnt and left a blister he would attempt to keep doing it until i got rid of the lamp.

I also noticed that he was way too independent for his years, he would never ever ask for any help no matter what he was trying to do, he wanted to do everything himself and would refuse and physically fight with me if i tried to help him, this frustrated me a lot because he would much prefer to wind himself up and get himself angry at not being able to do something himself rather than be helped or shown how to do something, it was always his way or no way and to see him be prepared to get himself in such a state over things was always hard because it would “set him off” into a frenzy of shouting and screaming and throwing himself around and could last for hours.

I will end this post here, I don’t intend to go through every year of my boy’s life so don’t worry but I have asked myself these questions today….

Was the signs there? 

Was there something I did or did not do?

Is it my fault we are where we are at today?

Why would i want to label my child?….

If i had a pound for how many times i’ve heard this phrase lately!….

To me it’s simple, it is not about sticking a label on my child as the professionals put it, its about getting my DS2 the help he needs to achieve his potential, it’s about having access to the support we so desperately need as a family, it’s about catching him now before it’s too late… A worried mother does better research than the FBI!

This is not what i had imagined or hoped for my son, our lives are lived in a constant daily battle of power struggles, my home is a battlefield where we have all learned to tip-toe around DS2 in constant fear of “setting him off”, this is a nightmare, people who don’t have an explosive child like this has no clue what it is like to live like this, i find myself in what feels like a hopeless situation of isolation where it’s just not worth attempting to go out in public anymore, my friends have stopped calling (never mind visiting!) my DS1 has moved in with his grandmother because he cannot “cope” with his brothers behaviours any more, DS2 is so un-predictable we tend to live day by day and dont make many plans.

DS2’s extreme volatility and inflexibility require constant and un-relenting vigilance and a vast amount of enormous Patience and energy, this in itself puts a massive strain on any hope of a “normal family life”. One moment he can be in a balanced mood and seemingly calm then in the next breath BANG! something so trivial will “set him off” and a monster is unleashed right in front of our eyes and my boy becomes someone i don’t recognise or like, someone i cannot reach out to with any amount of coaxing, shouting, reasoning, bribing, or even ignoring…. nothing gets through to him and if anything any attempts to do so are met by an escalation of his fury and these can last for anything between half an hour to the full day depending on the situation.

I have learnt to choose my battles!.

But a battle i did not predict and one which makes me very angry and frustrated is the battle im facing with the system, the way they are so quick in passing blame, making judgements, dismissing my concerns as a mother, and the way they make me doubt myself and my ability to parent.

I have lost count of the exclusions from school, the sending to pupil referral units for behaviour management and him being placed in isolation and having to be restrained, and yet no one has any real answers apart from the old “it’s learnt behaviours”, “he chooses to behave the way he does” etc etc…

Why can they not see what i see?…. an unhappy little boy who just wants a friend to call his own, a boy who has had been told so often that he is bad and naughty that he insists on having his bedroom window open on a night time so in his words “some of the badness inside him can float out of the window while he sleeps”. A boy who ONLY shows the emotions anger and frustration, a boy who wants to be good  and tries hard to be but doesn’t know how…..to name a few.

IT BREAKS MY HEART

 

Hello world!

Hello and Welcome to my Blog…

I will begin by introducing myself, i am a 34-year-old single mum to two wonderful but very VERY different boys, my oldest son is a typical teenager aged 15, i will refer to him as DS1 (dependant son one) throughout my blogging, DS1 is a very sensitive, heart on sleeve, tries to please everyone kind of boy who has Dyslexia and Dysphraxia but has never let it hold him back for long and apart from the expected teenage mood swings he does well in most things and i am very proud of him.

My youngest son is aged 9 but not a typical 9, i will refer to him as DS2 (dependant son two) throughout my blogging, DS2 is a very complex boy whom i noticed was different from being very small (i am trying to remain positive here) he is a very bright, intelligent and independent boy with a VERY good imagination and whilst i am just as proud of DS2 as i am both my boys he has been what i would describe as challenging in a way i was not prepared for, my baby boy entered my world and turned it upside down very early on.

I have fought with the system for a diagnosis since DS2 was three years old, as i believe whole heartedly that he is somewhere on the Autistic Spectrum, PDA (Pathological Demand Avoidance Syndrome) specifically stands out as it’s as if all research ive read on PDA were written personally about my DS2.

This blog will be about my journey for answers, i have read so many fantastic, inspirational and helpful blogs lately that i thought i would give it a try myself as i no longer feel like im as alone on this journey as i first thought i was, it will be therapeutic for me to vent my own personal views and thoughts of my experience as well as organise them, this is because im sometimes not very good at clearly getting my point across and frustration often overtakes, the longer this process has gone on the more frustrated i have become.

This is my third attempt at getting my DS2 the diagnosis he so desperately needs and i feel like I’ve been fighting forever, i’ve doubted even my own opinions and thoughts along my journey but i cannot deny what is very real, i have to keep fighting because if I don’t then who will? i am all he has in the world so if that means i am the over-anxious, over protective mother I’ve been described as then so be it.

It is bloody tough to be heard when all around you stop listening, I AM my child’s voice and for that reason i will NOT sit back and shut up, it is completely unacceptable that a parent has to battle so long and hard to secure their child’s right to be treated as a human being and a total lack of support has not only affected my child’s mental,social and academic life but mine as his parent and full-time carer too.

What i DO know is that my boy is not like other children and he is not just “naughty” and i am not a crap mum, im just tired of fighting but still i will not give up.

Thank You for reading 🙂