westie

speechless and really feel for you, how can that be right?? I would be following others suggestions and consulting a solicitor. If the school knew he had done this sort of thing before AND still left him without supervision I would be thinking about taking legal action against them because that is a really serious error to make. Obviously I do not know full story so may be interpreting things wrongly (I did read your original post about the incident, and I was horrified). XX <'>

Greene, Ross W. The Explosive Child, New York: HarperCollins Publishers, 2005 . An invaluable book, now in its third edition, that provides a new approach for understanding and helping explosive children. An audiotaped (condensed) version of the first edition is also available. http://www.explosivechild.com/bio/bio.html Another site which may be useful: http://www.explosivekids.org/index.html

Hi, sending you hugs firstly. Not really sure what to say which will help really but thinking about you it is really hard, we have all been there, at least I certainly have. It hit me last week when I realised I was shouting at my boy to ask him why he was shouting at me (pot calling kettle black perhaps ) .... anyway the author of the explosive child is Ross Greene, its a good book maybe you could loan it from your library. The author also has a website with some information on, I will try and find a link to it and post it on this thread later X

Hi, you can download some new leaflets about PDA from the PDA contact group (they print out on a4, double sided and triple fold format): 1) A Parents Guide to Understanding Pathological Demand Avoidance Syndrome (PDA) - this file name contains "pdainfonew" 2) A Teachers Guide to understanding Pathological Demand Avoidance Syndrome (PDA) - this file name contains "pdateachersguide" via the following link http://public.me.com/margoduncan Hope some of you find them useful, Regards D

Another useful book, for looking at and dealing with behaviour (it says AS but I think it is equally relevant to PDA or others on the autistic spectrum who show these sort of behaviours) is called: Asperger Syndrome and Difficult Moments, Practical Solutions for Tantrums, Rage and Meltdowns, by Brenda Smith Myles and Jack Southwick It has information about the characteristics of "AS" and how they might impact behaviour (cognition, language, sensory issues, socialisation etc) and then it has chapters discussing tantrums, rage and meltdown, and it describes what they term the “rage cycle” – rumbling stage, rage stage, recovery stage .Then the following chapters go into more detail about techniques to identify and describe behaviour, and then develop a behaviour plan including chapters where they look at various techniques (self awareness, self calming and self management) to try and help the child to become more aware and control behaviour. It mentions/ gives descriptions about social stories social scripts, self esteem building, visual schedules/ supports and graphic organisers/ maps, circle of friends, using the stress thermometers (like in the “when my worries gets too big” book) or stress tracking charts; and planning effectively to prepare/ reduce meltdowns. It has a lot of information, and a lot of the strategies it describes seem to be applied to a classroom situation so perhaps it would be useful for teachers or teaching assistants, but there are some chapters/ information for parents as well which is not quite as “in depth”. It seems to pull together bits I have seen in other books for managing behaviour. The description of the rage cycle is really interesting and useful in itself (to a parent or a teacher/ professional – it describes how the child may look/ talk/ behave at each stage; and about effective and ineffective ways for the adult to behave at different stages of the cycle – e.g. is says that at the rumbling stage effective interventions may include touch control, diffusing tension through humour, redirecting, acknowledging student difficulties and it describes what exactly is involved in “diffusing tension through humour” for example. It also details what adult behaviours may escalate a crisis at the “rage” stage of the cycle – some examples are: raising your voice, saying “im the boss here”, nagging, holding a grudge, mimicking the child or youth, making comparisons with siblings/ other students, rewarding for unacceptable behaviour.

I bought the following booklet about special educational needs from the National Autistic Society Bookshop, for about £4 I think. Booklet Title/ Author: Special Educational Needs, A guide for parents and carers of children with autistic spectrum disorders, by Carolyn Waterhouse and the NAS Advocacy for Education Team (National Autistic Society) It is a really useful introduction to most aspects of SEN. It gives example letters to write at different stages when you are trying to get your child help at school, and it gives recommendations that will help you; such as keeping copies of letters, noting times/ dates of phone calls, checking to see that a statement is not too ambiguous and that is reflects your child’s needs and adequately details the help your child should receive.It also gives suggestions about what a child with autisms needs might be, although of course it’s a guide and not all the suggestions may apply to your child. It explains about School Action, School Action +, Individual Education Plan’s and the Assessment and Statementing process, annual reviews and appealing to tribunal.

The Maze (a support group in Nottingham) have an excellent guide - its set out to look exactly like the form, and in the boxes it lists a whole load of things to consider when you are answering that particular question!!!! A link to their website is given here, you will need to ring and request one as they are not on the website. http://www.themazegroup.org/index.html They also do some advice leaflets about managing PDA/ meltdowns etc. If I was living in the area I would def. be attending this support group! The cerebra guide is also good, I think

Is it a proper pooh, i.e. solid, or is it looser (not diahorrea) - sorry know its not pleasant! Its just that my son still has issues now but at 6 it was worse, and he would have soiled pants a lot. He gets really constipated becuase he fears going to toilet and so he holds it in, the pooh gets really hard and blocks the exit, so to speak, then the soft stuff building up behind it eventually squeezes its way around and makes its exit whether the child wants to or not. Its not something they can prevent. That is why I am asking is it solid or looser..... I dont think punishing will work really, perhaps an exam by the doctor would rule out any physical cause (perhaps he has strained on toilet and its hurt and therefore he now scared to use it??) then you can start looking at other reasons. Is there something else stressing him that he may be reacting to? Do reward charts or similar work with him as this may be a way to encourage him to use the toilet. The doctor told me to ensure my son sits on toilet for at least 10 minutes after tea each day (a natural time to want to use the toilet so I was told) - more difficult in practice with a 10yr old, or likely any child who is not happy about this aspect of toileting! the www.eric.org.uk website has some useful information on (its mentioned on another post on this section of the forum if I have not got address quite right). Take care I hope you find a solution X p.s. my youngest strips off, at least bottom half including socks but often all his clothes, and then he stands on toilet seat then squats over it and crouches over it happily for about 10 to 20 mins to do a pooh - it looks really strange and rather uncomfortable to me and I wonder how he will cope when he grows, but I have no intention of stopping him as I feel that its great that he is happy to use the toilet and has no stress about the whole poohing thing like my other son!

you know lets just forget the whole upsetting thing, it was a big misunderstanding! I have to go and put kids to bed now, first day back tomorrow and its going to be a bit of a shock for all of us I think, so am expecting protests (at least) in the morning. Like you said earlier its the end of a long hol and it sets me on edge as well as most parents I imagine (not even trying to think about the summer) Also doing this course and have loads to type up for it, and cleaning and washing to fetch in so really must tear myself away now, enjoy the rest of the evening

Am I correct in thinking it was the bully who said that to you,not your boss? Anyway whomever it was is talking rubbish and just being cruel and horrid. X <'> <'> They are the one with the problem, and I hope the bullying is sorted ASAP this should not happen. Hop it was not your boss, no one with these sorts of opinions who say such horrid things should be managing others (the comment says a whole lot about their personality doesnt it?? )

Hi, I have read the other thread with your posts, and it is very interesting! I am lucky in that for J he is statemented and has been since 4yrs (as he started full time school) for firstly emotional, bahavioural and social and secondary for ASD. As to content of statement it is a bit woolly in terms of actual provision to be given (no times, specifics really - to allow flexibility??) but it did describe his needs as we understood them at the time (2006) and really they do still remain as concerns its the other stuff that also needs to be recognised. It should be changed next year (after annual review at end of this year actually) to reflect change to secondary school, and hopefully the help he needs with regards the issues described on the thread will be addressed, as well as his other needs.... As my eldest has always had a statement when youngest was diagnosed I thought, "should he have one too?" He doesn't have the same level of behaviour issues as eldest, so doubt he would qualify tbh, but there are definite issues that need addressing and working on. (they give him some 1:1 for co-ordination he has low muscle tone and hyper mobile joints too - this is in nursery he only there for 1/2 days till sept.) If I feel he needs more help I will ask them whether they feel there is a need to apply and if not ensure that he does get some support - new head next year so hope they are as good as last one!!! I was not aware that low level "needs" would not qualify you for statement even if across a number of areasThe whole statementing thing can get very complicated I have heard some tales about peoples battles to get needs recognised in school and feel lucky to have one for eldest. Note being expelled from nursery at almost 3, and then trying two other playgroups before finding one where he managed to stay for a while even though behaviour challenges still there was something I would rather not have had him experience but feel this is reason why they perhaps did assessment with no protest, it was very clear from early on that he was going to struggle . Thanks for pointing me in direction to read, Debbie

Its maybe me being a bit sensitive about it as I was not quite sure what I had said to offend. I know you not meaning I not entitled to opinion, this is another example of how it can all get a bit messy and why i try not to get posting my opinions - I hate arguing or feeling like I have upset someone (I would be terrible on a debating team I want to please everyone, and everyone to be happy!) So I am sorry if I have upset you KarenA. I am pleased that people are reading and replying to my queries as many things said have helped me with ideas to try etc. By the way I also know Bid was not singling out or querying PDA in particular its just that it was listed and many others do have other views on its classification as a diagnosis on its own, including many professionals as well. I was just saying what I thought about PDA.

ok hope that bid is not offended by the questions, or my comments. do you think I should change them before she sees?? ps would still like to read that other thread with your opinion about EFD, if you want to point me in right direction.

Karen, my reply was in response to Bid's reply on the thread, and she specifically mentioned a point of view of herself and her line manager. My questions are not intended to be offensive, but everyone is entitled to their opinion and I am just being brave enough to include mine for a change as I try if possible to not really state an opinion as I have seen some threads get a bit crazy, with people getting upset which is not my intention and I doubt it is intention of others but still misunderstanding occur. I would be very interested in reading your point of view about labels etc. if you want to point me in the direction of this other thread. I am also very interested to hear how professionals deal with this scenario, and bid being - i think??- on both sides as a parent and someone working in that field qualifies on that front.

Hi, this is the article I think Sally pointed me to when she first replied in the thread, though I may be wrong and looking at something completely different! This article didnt suggest a separate condition but that these things can be associated with many different conditions like ADHD and ASD amongst other things...... I am not sure it is classed as a separate condition????? I cant find anything that clears this question up either, but it is interesting info.

Just to clarify, its not that I want another "label" to put after his name, I want just an understanding of how to help him, and by raising the issues I see with the GP and school then at least it gets discussed and hopefully they suggest some actions that we can take with or without an additional label and they will be aware of what he does find difficult and maybe help him or at least take that into consideration. (at present we do not see anyone from CAMHS or anywhere else to get advice from) and school are perhaps not seeing it as much as we are so are not pushing but I do know he will not cope if he is not supported in secondary, or given help from now to be able to help himself. What would your line manager recommend/ do if a child shows signs from a number of disorders, (and perhaps there is not enough "ticks in boxes" to be able to diagnose any of them, or only one for definite). Would they 1) diagnose none - and risk parents/ teachers getting none/very little help and input from professionals as a result as there is seen to be nothing wrong) 2) diagnose one thing only (and just treat that ignoring other things), 3) or something else? In this scenario these things are seen by school and home, and I am assuming there are not "parenting issues" at fault!!! Of course an incorrect label(s)/ help can as damaging as no label/ help, so I do understand that you have to be careful. Just my opinion specifically about PDA (not other labels/ multiple labels for same child) When my eldest was first assessed I and professionals looked as ASD/ AS (this assessment was from age 3 to almost 5 and involved multidisciplinary assessment groups, attending special nursery, being observed at playschools/ home and still no answers ,though others still thought ASD) you could tick some parts of the ASD/ AS diagnostic criteria but there were not enough for a diagnosis. I thought personally he had traits but it did not sit entirely comfortable as described in the DSMIV criteria Alternatively, when the professional went through the list for PDA it was like it had been written for him. I had never heard or read up on it before this professional mentioned it (they had been part of the team assessing him since age 3 but had recently attended some training about PDA in the centre at Nottingham which is why it was only brought up then). I do personally think it is part of the ASD spectrum (and if you read the new factsheet on the NAS website you may see their opinion of PDA is different to what it used to be), as is Asperger Syndrome and would you say that should be called ASD, and not recognised/ treated as slightly different???? Of course all kids (even with same diagnosis) are of course different anyway and to me the label acts as a guideline towards things which might work rather that flailing around on your own with no idea what to do, and it also allows you to find other parents who may be experiencing similar things so that you can share and offload to someone who understands (like this forum does for us!). There was an interesting article in the autumn 2008 edition of the NAS "communication" magazine, called diagnosing difference by Dr Stephen Shore has anyone read this?

http://www.schoolbehavior.com/conditions_edfoverview.htm

sorry no advice, both mine have bitten (eldest worse) but he grew out of it by about 5 or 6 and cant imagine how you would deal with an 8yr old esp if you have no training in how to restrain safely <'> <'> <'> for you and your mum. I hope someone can help

The other day this happened and the bizareness of it was a real shock to us, perhaps you may not think so, and apologies if I have posted this before on here: on thursday J's friend came round for a couple of hours (both are obsessed by computers, both on spectrum so they can clash but generally get on rather well) Because it was raining I took him home in car at about 5.45 as he had no coat - its about 5 mins walk to his house, but across 3 roads. I left both kids at home with dad. And after I dropped his friend off I called in my niece's, who lives straight across the road from J's friend to look at her new kitchen. I had been there a few minutes when my mobile rang - it was J's friends mum who told me J had turned up at her door with no coat andbarefoot to return his friends mobile phone as he left it at our house, then J turned round and started walking back home (he must not have seen my car as it was directly across road which shows how one track mind he is). Now at this point I ran out of my nieces house, and could not see him anywhere so I got in car and drove home. I caught up with him on street near our house, soaking wet and indeed barefoot no coat and seemingly oblivious. Note: He is not allowed to go to his friends on his own because he has poor road sense, and he knows this and has never done anything like this before, though has ran off in temper etc. His need to return the phone was all that was in his mind and he just had to run out and take it. His dad thought he was upstairs in his bedroon, he had not said anything to him about leaving the house or about his friend leaving the phone. luckily J's young brother was too busy watching tv to follow..... J has no road sense, he runs off all the time and tries to cross at bottom of street, I have seen him two times try to cross directly behind bin wagon and nearly get run over by car coming down that he could not see - I walk him to school or at least try but he runs off all the time in front and recently I have seen him cross at bottom without looking both ways, he doesnt realise cars can come out of drives and get him, he walks on edge of kerbs, pushes people wherever they are near road or whatever (playing not to deliberately hurt them, although this is danger if he pushes them onto road) When we went out on his birthday for a walk with his aunty to a wildlife park he kept trying to climb and balance on the thin metal barriers that act as barrier between road and pedestrians. He was told each time but once he saw another one he HAD to climb onto it. Last time he did it a wagon passed on road (passed within about 2 feet from him) at time he had got on it and if he had overbalanced and fell(he doesnt have good balance/ co-ordination so this is real possibility) he would have been under the wheels of a 40ton wagon, and likely dead. Its like he has tunnel vision and is focused only on whats in his head and he has to act on it. Once walking back from taekwondo he fell in snow and a group of older teenage boys across the road laughed at him so he started launching snownballs at them although he had no idea who they were. I am sure they would have done something had I not been with him. I suppose I did not list these in first post really but this is really worrying aspect and I wrote this in letter to doctors as this type of stuff also fits in with ADHD type behaviour from what I have read. The other stuff I posted at start of thread will I am sure cause him problems at secondary school, and I think if he cant cope he will slip back into aggression. Also he puts himself and others in danger by his inattention and fixation on whatever is in his mind, and his need to act on it without thinking it through. Sorry I do seem so negative in my posts on this thread about J, he does have positive qualities and has done great recently in trying to control his anger. I stopped with relatives over the hols and their teenager's bedrooms (16 and 18) were a LOT worse than J's! I know that some of these things are common in kids this age, but not all of them together to that degree?? I sure many ASD kids do share these traits and point is when does it move from "just" ASD to ASD plus ??????? - I read about dyspraxia and some things fit but its all so overlapping that I just getting more confused so hope that someone at CAMHS will see us and answer our questions! Surely kids don't normally take off out of house without telling anyone what he was doing and why, barefoot, with no coat on just trousers and thin cotton top, and walk in rain to somewhere they not allowed to go alone to return a phone that no one had missed and which could have been returned later with no harm done????? Even his dad was shocked and surprised and that says something

Its not my niece, its my cousin actually, must be the late hour I posted, sorry. She was about 13 or 14 when the episodes started being noticed. Just wanted to get across that I too think they ought to be taking notice of you

I have a niece who had episodes like you describe she was diagnosed with petit mal siezures (epilepsy) I agre with other responders and would ask your gp/ a different doctos for a referral, and in meantime keep writing down exactly what happens before, during and after each time he has one. My youngest went through a phase where he kept doing some wierd kind of shaking/ eye rolling thing. He had EEG which was fine and we put it down to being related to his ASD but your incidents dont sound similar to that. Any chance you could film him on a mobile or other when he is showing the behaviours? Paed. said this would be very helpful but I never managed it.

my son has very poor organisational skills, he cant hold a pencil properly and is not terribly co-ordinated, when I did take him to swimming lessons as group, he was distracted easily (not naughty) but just swimming before she told him to, and being impulsive. Then I have a friend who is a swimming instructor and she gave him some 1:1 lessons and she found he could not co-ordinate arms and legs together so he cant swim very well. He doing Taekwondo now which is helping a little. He clumsy still. Its never clear as to whether he bumps into stuff and trips because his mind is elsewhere and he is focused on whatever in his head rather than whats around him. when he was 7 he did have an assessment by Occupational therapist, they said low/ poor muscle tone. Would they have not picked up if he had dyspraxia?? If you see the state of his writing and his punctuation and spelling you would think he had dyslexia, but his reading is fair (not something he chooses to do, and sometimes he misses words out so you have to ask him to go back)... I am paranoid I think! He is def. colour blind, not sure what that has to do with anything but will put it anyway...... With regards to maths he was behind but had some extra support and moved up to what school tell me are average for his age. He is reluctant to do tests etc, and gets poor marks, also because of his PDA and his low self esteem he is often reluctant to try if he thinks it too hard so gives up easily and tries all sorts of tricks to avoid it.... The man who phoned from the Single Point of Access team asked if he had learning disabilities, and I said no I did not think so..... It's all so confusing, when I read reports from all the people who have tested over the years, wherever he has a lower than usual result they put it down to his PDA meaning he reluctant to do it, and sometimes I wonder is this really the case or could they miss something? I think its going to be tough in secondary for him. I am visiting local mainstream secondary soon, and also plan to visit a couple more schools to see which one will be best, the local mainstream very focused on academic performance and strict (run like a 1950's grammar school is how one ex member of staff proudly described it) and I am not sure it will bring out the best in my son because he hates tests and academic work unless its a topic of interest, he needs teachers who understand how he works and who can be flexible in how they ask him things, and also he will need a lot of help organisising himself to move from one place to another will all stuff he needs (they dont have lockers so have to carry everything with them each day and they get detention if they dont hand in homework, so I best be prepared to never see him till late because he forgets to hand it in even when its in his bag!)

just an update: have appointment with EP and teacher at school to talk about some plan of action to help with this, also my GP has referred to single point of access team who phoned today to say they going to see if they can refer to CAMHS without me having to go see them first as they have lots of info. from my letter to gp (longer version with more examples of whats on here) but this may take about 4 months if they will accept as not emergency. Well things moving even if slowly. Today J's friend came round and about 5.30pm I drove him home cause it was raining and he had no coat (its about 5 mins away, and across 3 roads) and then when I had dropped him off I called in my nieces across the road from his friends house. a few minutes after I got to my nieces, J's friends mum phoned my mobile to say J had turned up at their door barefooted, and with no coat on to fetch his friends mobile as he had left it at our house, then J turned round and started walking home, (without seeing my car parked across road). I rushed off in car, and caught up with him half way home, soaked and with very dirty feet but seemingly oblivious to these things. Note: he has never been allowed to walk to his friends alone, also his dad was not even aware he was out of the house he thought he was upstairs in his bedroom..... Its like all that was in his mind was getting the phone back and so he just did. Its worrying how he can be so impulsive and one track minded as to do that. He left his new shoes in his friends garden yesterday and it rained so they got soaking wet, we only realised they were outside this morning. when he had to find them as we were about to go out......

The Distinctive and Educational Needs of Children with PDA Guidelines to Good Practice A Seminar led by Phil Christie (Consultant Child Psychologist) Ruth Fidler (Assistant Head Teacher, Sutherland House School) and Margot Duncan (Parent and National Co-ordinator of the PDA Contact Group) Date: Friday 12 June, 9.30 am – 3.30 pm Venue: Park Hall Autism Resource Centre, Park Road, Bestwood Village, Nottingham, NG6 8TQ cost is Professionals £120, and parents £60. you can download a booking form at web page below: (understand there are only 40 places) http://www.sutherlandhouse.org.uk/training2.htm

Number for Rotherham Branch of Barnados young carer's service is 01709 377157, ask for Lindsey.