Sign In

Please sign in using the log in form at the top of this page or click here

Not a member

You need to register before you can start a new discussion or comment on a post.

Click the button below to go to our forum registration page.

In this Discussion

Welcome to the PDA Society Forum. Please take time to read the 'Forum terms and conditions', which can be found via this webpage:https://www.pdasociety.org.uk/terms-and-conditions and also in our NEW Forum User Guide: https://www.pdasociety.org.uk/forum/forum-users-guide-created
Messages in the 'General Discussions' category of the forum are visible to all internet users. You are therefore advised not to post anything of a confidential nature in this category.
Welcome to the PDA Society Discussion Forum. Please read our User Guide for more information and contact forum@pdasociety.org.uk if you would like to join one of our closed Member Forums for registered members only.
Update- sorry VERY long post!
  • School refusal

    Well yesterday was a bad morning in respect of that T was refusing to go and i suffered as usual, managed to get him into the school and they saw what he was like for themselves. I want anyone & everyone to see it so that this shit about its not happening and all is fine cannot be said.

    He had to be physically forced and stopped from running out of the school, i left them to it, i dont want the shit that 'mum was there' as to why he is behaving the way he does.

    T came out of school ok-ish and i thought that all would be fine now, how wrong i was.

    So this morning it all kicked off with the usual school refusal and more bruises added to the collection i already have! he ran off and sat on the pavement on the street refusing to go. I managed to video record as much as i possibly could with him trying to bite me and kicking me like a good un.

    We are on the street for a long time during this and im trying so hard to get him to go, i manage to get him to the school (i had rung them to inform of the situation) but only into the playground he refused to go in, so i go and tell the receptionist she said 'well done dont worry he will come in' yeah rite they dont know T at all!

    I go out to see him and try to encourage him but he was gone he had left the school premises, i called his Paed while i went to look for him and i found him in the middle of the road heading towards home!

    Paed said take him home and well done, he said give T the choice of going to school or not and i said well i know what his answer will be, so we are home now and where do i go from here?

    T has been refused an assessment due to my ex area's evidence which is nothing but lies & slander so where does that leave us now? I will be going to see Solicitor next week to discuss our next step, FFS i cant take much more of this. I asked the school if they could contact the EWO this morning knowing that for T to attend sch is a big problem so more people can see and witness whats is REALLY going on plus i dont want to get into bother because i have always done everything the correct way, not that it has done any good.

    Sch have contacted education social services and they r going to get back to sch, the Paed is now doing his bit and will be very open and honest with all concerned, he said it cant continue like this anymore and he will have to come off the fence.

    I cant comprehend all of this but i do know that im very close to the edge of breaking down and i cant do anything to help my baby.

    Interaction with kids on our street

    Well as you all know T has been having difficulty with appropriately interacting with the kids in the area/on our street.

    Its not been a good weekend at all, T has been in fights now for the last week quite frequently and i am doing all i can to help him cope. I let him go to play footy with the boys and i let him have friends home to play, i truly believed T would maybe gain something from them on how to behave and whats appropriate.

    He was fighting with a girl yesterday and i had to intervene (saw it happening from my kitchen window) and i couldn't control him to stop him hitting her, he was trying to hit her with the tennis racket he was playing with at the time, he was trying to pick up a plank of wood to hit her with and was throwing stones at her. He was then dropping to the floor and i had to hold him to stop his head smacking the concrete pave. I managed to get another parent to get my brother and he came (a very big man) and carried T off home telling him not to behave like this and not to hurt me.

    When home T was still in a rage and a parent came with me (as support) he was trying to escape out of the house (which he does given the chance) i got hit of course and he was trying to hit others, which i would jump in to stop him doing.

    This morning at 9.30 we went to watch rugby (like we do every sunday with a female friend of mine & her son) and T was ok but when we left there to go to sports world for a football for him it all went wrong. T was hiding under the rails and hitting me for no reason being very verbal with me, then when we didn't leave the store when he said to he ran off out of the store into a busy car park (like when leaving the hospital after his stay there) my friend said she will go after him so she did.

    When she got out and saw him he was laughing and running further away from her oblivious to the dangers of the moving traffic, my friend tried to coax him back to her and he kept on running, he then fell and grazed his knee to which he was hysterical about. He came back in the store while i paid for his football and clothes but not without crying at the top of his voice for the whole time.

    We arrived home at 3.30 (it was an away rugby match we watched) and he immediately went out to play with his new football with his friends, within minutes he was back with scratches on his hand that were bleeding and then a little later 2 kids came to tell me T had kicked another boy in his nose and the boy was bleeding. Then T came following and he said that this boy was being horrible to him, i asked why was he horrible? he replied that 'L (the boy) said it was 2-0 and it wasn't, he was lying so i kicked him in his head ' no remorse or sadness for what he had done. Its like T doesnt register it is wrong to behave like this and its the same with hurting me, yes its wrong to hurt anyone and he can tell us this at times but he clearly finds it very difficult to put it into practice, especially when things are not his way or to his liking (again not in control of the situation, so he will get angry & maybe hit out).

    The parent of L came over (was expecting this) and she made it clear that T has done this before and she let it go but he has done it again and it can't go on anymore, so she is not allowing L to play with T anymore. What could i say she knows about his difficutlies and i cant blame her for not wanting her son in such a state being around T. This is so sad because in small doses i think T would probably cope better but he is playing with these children everyday and he is displaying how he 'really is' in front of them and their parents.

    Ts own cousin is amongst the kids in our street and he is a fantastic role model for T to look up to (he is nearly 9yrs old), he goes to a private school and is very sensible so its nothing to do with who he is hanging around with or anything else. A child cannot help being a child but T does not always like what the other children say or do, hence why he comes in crying that they are not playing how he wants to or that they dont like him.

    A lot of the kids have been VERY welcoming of T especially when they knew his big cousin lived on the same street, the kids are very polite to me and been very well behaved in my home, but like always T has got very angry with the children and they really have put up with a lot. For them to still be around and want to know him shows me a lot about their understanding (my brother and his wife have let the neighbours know T is special needs).

    So now as you can see it just doesn't seem to get any easier, i have SS coming in the morning at 11am and a neighbour who has seen T in full meltdown and witnessed his behaviour first hand will be here to say EXACTLY how it is for T in regards to interacting with the children. I am done with going over & over the same thing for all these years, i cant scream for help for T anymore they have to do something before his mental health gets worse, it wont ever improve until his profile which is recognised by Nottingham, myself and his Paediatrician is totally taken on board, just so that he can handle the things in life that kids his age would no way near react the way he does about things.

    Socail services first visit in new area

    Last week i had a call from SS saying they would like to do a visit to carry out a core assessment, so they came this morning.

    All i could think about was what impression are these minutes from the meeting behind my back gonna make? (there was a meeting behind my back without my knowledge regarding taking T into care as i am abusing him emotionally & Facticious Induced Illness is why T has the difficulties he has!, im the problem and these minutes are damning to say the least) I was advised that the visit was to carry out a child protection core assessment based on information within them minutes, i am so disappointed as the core assessment isnt for his needs.

    I had to tell them how i was disgusted and very angry at the lies within the content of them minutes and when i gave the facts that i was not allowed these minutes and it was held without my knowledge they were quite shocked. They tried to assure me that anything they do they wont do behind my back and will let me know of everything.

    I knew this shit would follow me because what they have done & wrote is nothing but lies and blaming me for the behaviours my son has, i advised them that i will not accept what they have done to me & my son and i wont let them put a bad name on me & my parenting and i dont need this on top of the life i live!

    They seemed nice enough and i had my bro here with me who helped by explaining what life really is like for T & myself.

    So they are going to request the core assessment done by my ex area (dunno if its a child protection one or a child in need one now after them minutes!) this core assessment was started in march and it was completed a week before i left my ex area so Ts SW told me and yet to this day i am waiting to receive it and foned them no end of times but no one is getting back to me! gosh all this is sooooooooooo frustrating!

    Yet they can write lies and say my son is at risk from abuse! they have no bloody idea!!!!

    SS also said they want an educational assessment done (this has never been suggested before at previous schools) and they will contact his school to get this started asap.

    They said they will have to see T and i told them they are more than welcome and they can make their own mind up when they see his behaviour for themselves. I told them i cant work out why anyone in their right mind wouldnt be alarmed at the behaviours especially when he is violent towards myself (like what many parents have to endure with kids on the spectrum).

    T will show exactly what he is about in front of anyone thats T! will they ever learn? i hope so! I told SS all i want is help for T to cope with the minor things in life that he gets ever so frustrated and wound up about, along with help for his violence because he is getting bigger & stronger and he clearly needs help.

    So i guess time will tell if they feel the need to get a care order to place T in foster care, it just doesnt bare thinking about, i will fight them tooth & nail all the way!

    Socail services - part 2

    Well they came, T showed his true colours with inappropriate behaviour and being aggressive towards me, i could see they were taken back and were watching closely.

    SW started to say that T must go to school and its only been a week he has not attended and it may need to go on longer for something else to happen, hmm dont like the sound of that! So i said this is history repeating itself in regards to Ts school refusal and the last time my GP talked with EWO and asked for home tuition T was left for 6 months without an education. She quickly said no way would we leave it that long maybe 3 or 4 wks of him still refusing school would be enough for looking for alternative options.

    SW then went on to say why is T refusing school (i am fed up to the back teeth repeating myself and i told them so!) so when i told her she said 'so do u encourage Ts negative talk about what is wrong with school?' my reply was 'are u mad?!' well i was fuming no way on this earth would i do that i told them and she replied that she has to ask these questions, still isnt nice to be scrutinised like this tho.

    I explained that i know for a fact that kids on the spectrum are forced into mainstream and clearly this has never worked for T since he started nursery sch aged 3 yrs 9 months to the present day, so if an EBD school is needed for him then so be it. I told them i wont have my son suffer for many more yrs struggling to conform to how people want him to, T needs to understand himself to cope with life and he will not get that in mainstream. I said the government closing special schools down and forcing kids into mainstream ISNT working if they cared to know the facts in the special needs world! All i got were looks but i dont care i will tell it how it is because i live it too, like many of us up & down the country.

    As time was going on i could see i was making it known this is no run of the mill bad child behaviour or a result of my abuse but it is a developmental problem he has and this is like i have said before HISTORY REPEATING ITSELF! gosh when will they smell the coffee and in fact i did say people need to wake up and smell the coffee before its too late.

    I explained about all the trouble with the kids in our area and how T doesnt cope with them, T went upstairs with 2 girls when they came and they could here how he spoke to them (well shouted at them) and he did hurt a girl and had her in tears (do they need to see anymore?!!!!) T then came in halfway through our discussions and again displayed VERY inappropriate behaviour even resulting in him telling them to leave our house now! Well that told em!

    SW was saying that it would (in her opinion) go from being a child protection assessment to a child in need assessment, which is what it bloody should be! Also that they will refer T to Young Person Services (like a sessional worker) so that someone can come and take T out to do the things he wants to do. That fine in theory but time will tell if that goes well and i have said any incidents that happen in my home in result of him going needs to be recorded and what happens when out with this person needs to be recorded also, she said any incidents would be noted and the person who takes him out will be made aware of his behaviours.

    So she said that things take time and sorry but thats they way things are, dont we bloody know it! I then said i had called CAHMS to get the ball rolling with them seeing T for themselves (new people to witness Ts difficulties) and i will be speaking with the lady who called me back last week but i was out at the time. They said they will happily speak with CAHMS in regards to what is happening with T and will try to do what they can where they can, they started to thaw out as the meeting progressed.

    In the end they admitted that T behaviour was not normal or appropriate and they will call me within 2 weeks, we will see eh!

    I then called CAHMS and got through to the lady i needed to spk to and i told her the whole story (in brief of course) and she let me know she has got Ts details on screen, also that T was discharged from CAHMS in my ex area in April 07!!!! WTF!!!!! how can they do that and not tell me? furthermore how can they do that before Ts report from Nottingham came through and how dare they attended a meeting in May to discuss behind my back that my parenting was the issue and possible abuse along with disregarding the recommendations of the report clearly stating CAHMS & myself work together in helping T! CAHMS said they would but how can they blatantly lie like that when he was long discharged back in April 07!!!!

    The corruption gets worse and now i cant wait for it all to come out in the wash, i will be smelling just fine while they will stink rotten!!!! ranting they make me sick!! so as i see it they were all set for leaving T to rot and not give a toss! ignore Nottingham's findings and more than likely they were gonna take T off me, thank god i moved when i did, for Ts sake!

    When CAHMS (in my new area) told me of this news not known to me i stressed my concerns about the whole thing, she said there is a 6 month period to which T can accepted again and she will need to speak to her manager about it and call me back today. Well the 6 months would be up at the end of this month, so i guess ive just found out in time that T was dishcarged without my knowledge they had better take T back on because i am in no mood for more fighting when he should be on the books anyway! censored

    OK so thats it for now im off to nurse my cold and im run down i think, not suprising eh!

    Sorry for the long post but i havent been about for a while and thought i best update so u know how things are now. Im tired and sick of fighting to get my son understood and his needs met, i guess nothing will happen until something terrible happens and that frightens me.

    Bambi x
  • Amanda
    Posts: 281
    Bambi, looking back to when Mark was younger I could honestly have written this myself. I can feel your frustration, your pain but also your exhaustion through the words you have written. PDA can be hell to live with can't it at times. All I can say is that from similar experiences and with Mark now nearing 18 my knowledge of PDA and more importantly of him has helped me manage him more effectively and I dont feel the frustration as much as I did back then. Things do get better, I know it doesn't feel like that right now and I know you feel as if you are clinging on by your teeth, but you will get through it I promise.

    Remember you are not alone and that we are here for you, I hope your ss people keep their words and offer you some practical help.


    Mand
  • webbwebb
    Posts: 2,565
    Hi Bambi,
    It must have taken you a while to write about what has been happening to you and T but I'm glad you did. I know I have been in your shoes with my son and I'm sure many other parents have been too but you took the time and put in the emotional effort to tell us about it all. I'm sure many parents will learn or identify with what you have said.
    My son is 13 now but like you and T, mainstream was a nightmare ie the refusing to go, not being able to play appropriately with friends, the physical violence and the problems with finding any help(SS or otherwise!)
    However I can say that now I understand my son so much better than I did when he was younger we don't have quite so many problems/outbursts!
    I hope the SS will be able to help you, positively of course. They did find us a befriender/link worker who played with our son and eventually started to take him out places. I hope this may work for you and T.

    Thankyou again for sharing your feelings and problems.
    Paula
  • Garden
    Posts: 329
    Bambi

    Poor you. I was in my daughter's school this morning trying to explain to them about her PDA and I was feeling sorry for myself, but it's nothing like you are going through.

    I did want to mention sth about CAMHS. I have been to CAMHS re both my girls in the past (they are both adopted and we went there to get help for them just after they were adopted, about six years ago, way before we had any idea about PDA or the learning difficulty it turns out her sister has).

    Anyway, my understanding is that CAMHS work on the basis that the child's behavioural problems are all down to the parent(s)' parenting and so they tend to view the parents as the source of the problem and so they try to address that by giving them strategies to try, or looking at the issues in their lives that may be causing problems.

    I was completely incensed by this approach, which didn't take any account of the fact that our girls had been completely traumatised by their birth parents (neglect, abuse) and that they had brought their problems through the front door when they came to live with us.

    But it didn't matter what I said - everything I said was turned round and used against me if you see what I mean, so that everything was my fault. This is apparently a really common experience for adopters. It's so easy to pick up if you're an adopter, of course, because the whole situation is like Alice in Wonderland, where you are being accused of sth that just isn't your doing and it's so obviously wrong.

    Anyway, I just want you to know that places like CAMHS are fine for the cases where the parents are pretty hopeless - just like Supernanny on the tv (and all the other parenting programmes in fact). They base their success on getting the parents to change, not the children. You need to get out of that bit of CAMHS (you are probably seeing some sort of behaviourist therapist) and into the bits that look more at the underlying problems in the child. I really get cross with all these tv programmes and newspaper advice columns which always seem to suggest that if the parent does x then the problem will disappear. It gives everyone false expectations for everyone to live up to and if your child has a condition like PDA or autism or whatever and is kicking off in a public place, there is no understanding as people just think you're a terrible parent.

    By the way, has anyone ever tried using those cards that I understand you can get from the National Autistic Society, which say sth like "this child has a condition called autism which means that he............. He is safe with me, please do not interfere" or sth like that anyway. You can apparently also get them in other languages (which would have been useful for us when we went to Madeira one year and dd threw the most awful tantrum in the middle of this public park and I was sure we were going to be arrested or sth).

    Take care, Garden
  • webbwebb
    Posts: 2,565
    Hi Everyone

    Firstly, I would tend to agree with Garden about CAMH's.
    I think their "family therapy" does not address issues around parenting a disabled child.
    I did go to CAMH's with my son when we thought he was clinically depressed, we saw a great psychiatrist who helped alot. She understood autism and mental health issues.
    However, when I have had behavioural problems with my boys I have preffered to see a Psychologist. I have been referred to the psychologist by my son's paediatrician. This, I have found to be the best source of help for my son's behaviour BUT they have to have an understanding of PDA or at the very least ASD's.

    With regard to the NAS cards, I have used them quite a lot and have found them to have the required affect in public.
    When my son has a meltdown in a public place my first priority is my son! I see to him first, try to calm him or if necessary restrain him. I try not to take any notice of the general public but if someone starts to make comments or tries to stop me restraining him I whip a card out my purse for them to read. The cards usually do the trick and they go quiet so that I can get on with managing my son.

    Hope this helps, contact the Autism Helpline for the cards(sorry tele. no. on their web-site www.nas.org.uk)
    Paula
  • mango69
    Posts: 967
    I also agree with the general feeling that sometimes comes across from family therapy. However, it is the way we deal with a situation that can affect the outcome, ie trying to remain calm during a meltdown etc. None of us can 'fix' our childrens disabilities and all that family therapy can hope to achieve is to help us handle their behaviours as best we can but I think that often comes across like its our fault when of course it isn't. I have always found it helpful in some ways but that may be just because its good to bounce ideas off someone else. The fact of the matter is that often the psychologists approach the pda child like any other child and wonder why things are not working! Recently, we have had great difficulty (again!) getting our son to stay in his bedroom at night without me being there til he falls asleep. After 2-3 months of the suggested gradual withdrawal technique by our psychologists, it was obvious we were no better off than when we started and I could get no further than the door. Then, one of his teachers offered to help and we tackled it from a purely pda angle, using a few picture prompts for 'together time' and 'Max time', we made him a little box of nik naks to browse when he was in bed on his own. We also changed his bedroom around at the same time and amazing - he went to bed no problem at all. That was about 3 weeks ago - now things will undoubtedly go pear shaped again soon but it just took a bit of thinking about from a pda angle to change something the psychologists had been trying to change for 3 months. The Elizabeth Newson centre is always pointing out to beware of psychologists unless they take on board the PDA diagnosis. All the supernanny, tiny tearaways advice is ok for neurotypical kids but they often make behaviours in our kids much worse. Before we knew there was something up, we tried the naughty step when our son was 3 - he laughed in our face and ran up the stairs and chucked his toys at us. We tried the naughty chair and he lobbed it across the room at us. We tried star charts, which worked for a few days then he ripped them up. You name it we tried it. It would be good if there were psychologists trained in PDA behaviour, like those at the Elizabeth Newson Centre.Maybe one day! I am thankful my sons teachers are getting very good at it.
    I hope things get better for you soon Bambi, and thanks for telling us what's happening. I hope it eases things a bit to know we are all thinking of you.
    Margo
  • Thanx guys for ur kind and caring words, sometimes i feel like no-one cares about us and would rather we rotted away without asking for help. I was told by a professional that i should stop making complaints and stop antagonising professionals! WTF! should i shut up and not give a toss for my son's needs then?!!

    I must say that the professional who told me this has made me see the EN centre in a different light, i had to go to them for a 2nd opinion as it was, disappointed is an understatement!!! It seems regardless of their findings giving my son a dx was not important and what was more important was that i shut up and not make a fuss. Why tell a parent to join site like this and why tell me my son will always be like this? if a dx is not important or needed for his needs?

    I cant work it all out but i can work out how destroying all of this is for my son and my family, its like a nightmare i cant wake up from :(

    I will keep in touch and definately let u guys know how i am getting on, thnx again for ur replies :)

    Bambi x
  • Amanda
    Posts: 281
    Aw poor you, you're really going through it at the moment aren't you!
    I do hope something happens soon to help you feel more positive.
    Have to say my impression of CAMHS is the same as everyone elses, in fact I felt the whole purpose of the time we spent there was to make sure that we weren't the cause of Marks behaviours prior to them giving him a diagnosis, Mark never once speoke to them, not once and we went for almost a year.
  • webbwebb
    Posts: 2,565
    Hi Bambi

    It sounds to me like the professional who told you "stop making complaints and stop antagonising professionals" really doesn't understand what you are going through and has no understanding of the impact PDA has on the child and families lives.
    I presume from your post you are saying you are glad you went to the E N Centre? I got a little confused, sorry.
    Some professionals still haven't heard of PDA, of those that have most can never understand what we are going through. A few understand but are powerless to help apart from giving the diagnosis.
    I truly believe I have only got the help I have had because my son's official diagnosis is still recorded as Autism(eventhough his teachers and myself know he has PDA).

    Bambi, I am thinking of you loads and I am here whenever you need to talk. I do hope things improve soon.

    Paula
  • Thnx guys ur encouragement and kind words mean a lot to me :)

    Sorry Paula i have to say the professional who told me not to complain etc was in fact someone from the EN centre (she said it wasnt in Ts best interest, so god knows what would be in Ts best interest! probably to rot and not cry for help then they could put T into care) this was wks after assessment day by a telephone call. Yet on assessment day i was told my son would always be like this and to join this forum. But then when they spoke to my local area professionals (the same ones who said T had no ASD or neurological condition, who had a meeting behind my back to discuss that Ts probs were a Facitious Induced Illness and to get a care order to take T off me) it seems things changed totally regardless of what was observed for the day at the EN centre.

    I am at a total loss and to me this is destroying my son & my family, i had never heard of PDA before going to EN centre so how do i 'make out' T has the behaviours of PDA?!!! What got me also was that i had to wait over 2 months to get the report (should of had it within 6 wks) and the professional from the EN was actually present at the SS meeting behind my back too.

    I guess i must dream Ts behaviours and he isnt at all like he is, if they want me to suffer a breakdown they are doing a good job at it :(

    Life is crap and no one cares i see that now, the only thing keeping me going is that T needs me because without me he would have no life. I have a fantastic solicitor who specialises in special needs cases. Things will get nasty i can see that but through no fault of my own, i have done nothing wrong and would never say my son had probs if he didnt and at the end of all this (if i dont lose the plot) i will be making it known to all & sundry because what i have had done me and still to this day is criminal.

    Bambi x
  • Hi Bambi,
    It sounds like you are having a really hard time (understatement I am sure) and I hope that things do start moving along for you soon, and that you get the help you and your son need esp. in regards to school. My son is 8 1/2 and displays a lot of the behaviours you describe (though not at present violence towards me or his dad - he seems to save it up for his friends/ teachers which is not good at all) although he is verbally aggressive with most people nowadays. Please keep posting, as you can see we all want to support each other as there is little understanding of PDA from many people!
    take care,
    D
  • webbwebb
    Posts: 2,565
    Hi Bambi

    I hope we will always be around for you as it sounds like everyone else seems to be turning against you.
    I am very concerned about what you have said regarding the E N Centre.
    Please don't name anyones name on here at the moment but I would like to clarify the situation and possibly help sort things out.
    T had an assessment done at the ENC because you needed a second opinion as your local prof's said he didn't have any type of ASD or PDD.?
    The ENC assessed him and said he had PDA?
    Someone from the ENC went to a mulit-agency meeting (SS,local prof's etc) and as a result of what was said at the meeting the ENC have changed their minds and say T does not have PDA or ASD or any PDD?
    Have you had this in writing from the ENC, or by telephone or is that what the local prof's have told you the ENC said?
    I think it would be wise for you to telephone the ENC and hear it from them and ask them why they changed their minds!

    I have had friends take their children to the ENC and everyone rates them highly but have had to wait sometimes upto 12 weeks for their reports.

    I work on a Helpline and have heard this kind of situation before. It strikes me that it is easier for professionals to blame the parents than it is to meet the needs of a very complexed, challenging child.

    Life is extremely tough for us parents and you are having a horrid time of late.
    There is very little help or understanding out there for us and our children but the least you should expect is some schooling/education for your son.

    Let me know about the ENC.
    Thanks....Paula
  • Hi Paula

    What happened was, i was told on assessment day about PDA and i was advised by the professional on the day that they are very happy to speak with any professional regarding the realism of the condition PDA. I was told my son would always be like this and he would not grow out of it and to join this forum for support and to know i am not alone with a child like T. The professional said she didnt think T would get a dx of PDA but probably PDD, she gave myself and my family information regarding PDA and also included it at the end of his report.

    Then after the EN professional spoke with the professionals in my local area (yes this assessment was for a 2nd opinion due to my local area professionals saying Ts probs were not neurological and down to my parenting).

    I spoke with the professional from the EN several times after the assessment and during one of these calls i was advised to stop antagonising professionals in my local area and to stop making complaints (so basically i was to shut up and put up, regardless of the fact what my local area professionals were playing at leaving us to rot!) I then recieved a letter from the EN saying they cant discuss anything more with me and may see T again in the future (like it is noted on his report to be assessed if need be in a yrs time). I was forever contacting the EN as i was concerned about Ts needs not being met.

    When the report came he had no dx but the EN state there is a discrepency about what T scored in my local area compared to what they scored T on something (my local area said T was 76% yet the EN scored him 17% this a VERY big difference)> The En state that they feel T has a profile of AS & PDA which is very different to what my local area seem to think and this has caused a problem with dx T properly. They stated the recommendations at the end and said my local area have said they are willing to help in an way poss with monitoring T with the recommendations made. Not known to me was that T had been discharged without my knowledge from CAHMS back in April 07, T was assessed on the 1st March 07 and we hadnt even got his report on 1st April (due to the long delay regarding difference in opinion with my local area professionals!)

    Then i found out that a meeting was held behind my back (yes this professional from EN was present at this meeting held in May 2007) was organised by SS and it was held at the sch where T came to the stage of a breakdown IMO (like now refusing of sch and his behaviour being VERY hard!). I got the mintues of this meeting by accident thank god!!! from Ts HT and by gosh was i shocked by their discussions! They were wanting to get a care order to take T into care as they feel Ts problems are due to a Facticious Induced Illness and that i am emotionally abusing him along with making comment abouts T having a sore bum (which is noted in Ts GP records for yrs now as he still to this day suffers a sore bum and his poo has always been runny). I have already been questioned about T being sexually abused or has he witnessed oral sex, this is due to him wanting to wee in another kids mouth at the after school club and trying to pull the other childrens pants down, the EP at the time said 'if T had an ASD or not he would have to witness that behaviour to behaving in that way' as u can imagine it was heartbreaking to have to endure. I have stressed Ts sexual talk and inappropriate touching for yrs now but no-one cares about that they just want to take T off me and say his behaviour is because of me :(

    I asked the EN why tell me all what they told me on the day if this isnt the case now in the report? i was told this was said to me before they spoke to professionals in my local area(wouldnt one not say nothing then? rather than tell parents such things and then to change their mind due to other professionals who think they know it all?!), obviously their take on what is wrong with T matters more than what was observed by the EN centre themselves on assessment day. I was told by the EN a brain scan and tests would be needed but not one word was mentioned of this in the report, myself & my family who were with me on assessment day are fuming with all this to say the least!

    Ts Paed has told me the report was watered down after speaking with the local professionals, how & why is this allowed? when asking the EN for reasons as to how they can tell a parent such things on assessment day then go back on things that were said, all i got was this was before they spoke with the local professionals, so does thier independant assessment of T count for nothing? I was also concerned with the fact that the EN said a dx is not needed! WTF! the local area professionals say he is being abused and want him in care and the EN professional let them discuss this and not use their findings to stop such filth happening to a family in need! THAT worries me a great deal as i felt they totally understood T on assessment day and when they had the power to stop all these LIES they didnt :(

    All i can do is fight to keep T with me and fight to get him the help he needs, my solicitor is WELL aware of all of this and when my case goes to court (which is highly likely with how my ex local area have slandered me & lied TOTALLY) all this will be made public knowledge as i have taken all i cant take now, the time has come for me to make a stand for the sake of T and other parents who have to endure such heartbreaking unprofessional comments.

    I now have a 7 old child at home not receiving an education and suffering as he isnt coping with himself at all. He is struggling with his peers on our street and cant bring himself to attend sch like other children, along with everything else that is going on and its sad things have come to this when it all could of been prevented and helped. Anyone in their right mind within minutes of being with T can see what we all see and its a child that clearly is on the spectrum.

    When u say Paula that u have heard of this happening before can u tell me more pls? pm if u can discuss it and by the way i am writing a book about my life with T, i want the whole world to know what i have lived and like my solicitor says i have a hell of a story.

    Bambi x
  • Amanda
    Posts: 281
    Hmmm.....I would be asking why you weren't invited and involved in that meeting as is your right. Even if this was a Child protection meeting, you still had a right to be there and have representation.
  • My solicitor has asked them hun (several wks ago now) and they have failed to even answer my solicitors concerns surrounding this nasty meeting behind my back, this is why things will get nasty and they have no-one to blame but themselves for being so unprofessional regarding my sons needs.

    Bambi x
  • Different conclusions were reached on the day of the assessment at the Elizabeth Newsom Centre and in the report in our son's case too (for him it was not felt on the day likely that he had PDA, but that was the diagnosis in the report)

    We were quite comfortable with the idea that they had not been able to come up with an overarching diagnosis - we'd rather have no diagnosis than a wrong diagnosis. We are also comfortable with the diagnosis of PDA, though he isn't a classic fit - either on the criteria or from listening to others here - he is very clearly not autistic despite autistic features and appears to have many specific learning difficulties.

    I think all of us are aware of the pitfalls of a snapshot view - and whilst the ENC assessment is a long one, it is still just one day and everyone is tired at the end of it. There's the DVD to be reviewed, people need time to reflect, to compare the assessment day with the reports beforehand, there may be follow up questionnaires for parents and others involved and all of this evidence needs to be drawn together. So it isn't really surprising if there is a difference between what is said on the day and what appears in the report, though I certainly felt I needed to phone for clarification of the decision making process.

    And sometimes I would agree with the ENC - there are for most of us sadly many possible fights we could have with various agencies, but not all of them have the capacity to benefit us or our children, other than proving we are right (and perhaps benefitting other families in the future). I would really like to have reported one doctor to the General Medical Council for misconduct, but weighing up the risks/costs and the benefits, we decided against - which doesn't mean I don't think there was a case to answer. It must be so hard for you though when T's needs are so great and the gap between them and the actual provision is so wide and it is just you on your own. I don't remember whether you have accessed PALS re the health service or the Parent Partnership Service re the LEA - I found the latter invaluable.

    I am a bit mystified by the idea of Factitiously Inducing PDA, especially in an observational assessment! They must think you are a very ingenious woman!
  • webbwebb
    Posts: 2,565
    Hi Bambi

    Well, I really don't quite know what to say!
    Thanks for clarifying a few things and as Amanda says they were wrong not to invite you!
    I have sent you a short pm.

    Paula
  • Hi there Bambi, i have just read your post, and am so sorry for you, and for all the other parents who cope with such extreme behaviour. sometimes it just feels like we are the ones going mad! and if it wasn't for groups like these, we probably would!! i am fairly new here, but i joined for support, and contact with other parents, who are really the only people who knows exactly how we feel, and what we face on a daily basis.The diference between mine and your child is that he is the wonder boy at school, and excelling. he has two faces, he does not socialise with anyone here, nor does he like me too, he continually blames me for everything, he tells me he is ashamed of me, calls me lazy, and a dole bludger, i stay at home, because when i went out to work, that was wrong to, he has a huge ego, and thinks he is better than everyone, even the kids from the local village1 yet at school, he is a dream! and manages to be sociable, we moved last year, and the people who he was "friends" with at school, use to call for him, and he'd never go out, and sometimes he would get me to say he was busy, it got to the point, that the parents asked me if i thought he was to good for them!!!, i am constantly looking like an idiot, because of his outside face, and knowing what a complete bully he is at home. I can only compare it to the husband who is the pillar of society, but when he comes home, abuses his family, and no one ever knows! But we do, and can support each other. You are a good mum, and i expect like me, you will keep fighting for your child, because quite simply, we love them, and want the best for them, so hang in there, and just get on here when you need a rant!
  • Thanx guys for all ur support, T has not been to sch again all last week and same today :(

    I have been on phone to HT and he is concerned that i am not getting any help from outside agencies. I will be on the phone again 2moro no doubt hounding away and by god will i hound, i wont ever give up on my son even if the system tries to! :cry:
  • Hey there, no you will never give up on your child, it is such a shame you have to fight all the time, just when you think you have no fight left, in comes another battle and off you go again!!! stay strong girl, as i keep saying, i'll be laughing about this, this time next year!!!!But sometimes, like you i'm sure, i would give anything for just a normal life... whatever that is, but here we are, anything but normal! lets just pat ourselves on the back, and thank God that people do understand and care xxx
  • Hi Bambi,

    Just read through all of this post again and it makes me mad to know what you are going through and there have been others who have gone through similar, it sems that people want to stick together so much rather than say someone got it wrong in the first place.

    We all make mistakes but why do the professionals not admit to the ones they make, why do they have to stick together and try and cover things up.

    The truth will out and you will get your justice and hopefully with the right help a happy little boy.

    I think you've done very well with sticking in there and just wanted to send you a hug really. Our situation could be seen as quite similar to your's and it shouldn't be allowed to happen.

    Take care hunni :D
  • Thanx angel :)

    What a sad, ignorant system we live in :cry:
This discussion has been closed.
All Discussions