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hello new here
  • allsetuk
    Posts: 8
    Hello New here , was kindly directed by someone over at ASD forum because of the behaviours id described not being typical to aspergers. Its very interesting but i cant read the parent to parent bit and i am trying to find out some more characteristics, my son is nearly 5 and has had a 2 year study. He has always been different but his teacher and i feel the aspergers diagnosis is not 100 percent right as their are aspects that just dont seem quite right. My son has had his cases assessment and it came back with no mention of severe aspergers , just autistic disorder non specified ,

    i would really appreciate any help or advice on coping strategy i am a single parent and i am totally dedicated but i am finding him increasingly difficult, i love my son and have isolated myself from everyone in order to just make it through the weeks . he was banned from friends houses many years ago because he is so busy and full on.he has just displayed odd behaviour since he could crawl i always knew but thought it was my normality and i have remained as upbeat as possible.......He was just diagnoses 2 weeks ago after 2 years of video assessments, reporting , diary keeping , I was given a reading list !!!! and left to get on with it ...im not sure where to go from here.

    I cannot raise my voice without him saying do not speak to me like that over any kind of matter, he argues and disagrees with everything and has a literal response to absolutly everything..... i cannot seem to get through to him that he doesnt need to do everything from morning to night one inch away from my face, or on my knee, he follows me everywhere.......he is totally over aggressive having to bear hug me all the time , punches , kicks and generally leaps on me all the time, sometimes for fun. And just doesnt seem to respond to mummy being upset, he is very bright and clever and has a good command of language way beyond his years yet seems to have no empathy with how much he is hurting me or his freinds when occasionaly he lapses at school and bites or claws.
    Ive tried explaining repeatedly and he wont hear it , hands over ears and NO NO NOT THE BAD STUFF, and ignoring or walking off he just follows , ive tried naughty steps or mats, these just descend into self loathing on his part that somehow he failed, we have star charts ...does anyone have any suggestions on how to connect with him.
    :?
    Thanks for listening
  • Hi allsetuk, i am in shock as to how ur son sounds so much like my T! I got a verbal diagnosis of what my son is likely to be diagnosed with, this is what happend today in Nottingham, i live in West Yorkshire and this is the 2nd opinion assessment:


    The staff were brilliant and i really did feel comfortable and so did my sis & bro who came with us, T was displaying his typical behaviour from the minute we entered the centre.

    We were discussing T for hours and watching him in assessment thru a 2 way mirror, he was video recorded and they wanted a pic of T so i let them have one. The results were Patholigical Demand Avoidance Syndrome (PDA) or he may get dx of Pervasive Developmental Disorder n.o.s with some Autistic behaviours, what a mouthful!! Well i was shocked at the diagnostic criteria for PDA as it sounds very much like T but i was very pleased in the findings so far and the psychologist will have to watch his recording back and complete the information forms we answered during the session.

    She is very concerned about his sensory issues because they are clearly there and a big problem in his daily life, she wants a brain scan done to see if he has epilepsy and wants to sort medication to help sleep problems. I said to her i knew there was something seriously amiss with my T and thats why i cant let mainstream school destroy him anymore and i would personally prefer T to be in special schooling. She told me she was relieved i said that to her as she was worried by my response when she was going to suggest a special school is needed for T, how bloody great is that! a woman after my own heart! lol bless her.

    There is alot that needs to be done with T and she wasnt shy in telling me exactly how it is, even when she informed me she was sorry but he has this condition for life and we need to help him cope, all i could do was cry i was finally getting answers for Ts very strange & puzzling behaviour after over 4 long and very hard years.

    I dont know how i feel at this moment, i cried there and in the car home yet i was so appreciative of the fact at last i feel like i am getting somewhere. T may one day be happy to go to school, get help/intervention with great results regarding his quality of life later in life and thats all i have ever wanted.

    I feel today has been a very good day in terms of help needed for T as soon as poss and the compassion all the staff had towards us, they made me feel like i was a good parent and i wasnt to blame for how T is.

    So forward & on eh! my brain is frazzled!


    I really feel for u coz i know exactly how u are feeling and how so damn hard it is in everyday life, i too have isolated myself from going anyway with T is very traumatic for me & him! I suffer violence on a daily basis and he draws blood when he manages to bite me (he is very fast). Life is not easy for u i know that and i wish i could offer advice but i am also at the end of my tether as T is not having any of it if he doesnt want it and thats tough to live with it, enduring it day in day out with most daily things.

    Im new here and the centre where T went today gave me this forum to join which i am well pleased about, meeting parents in my situation can only be beneficial for us knowing we are not alone.

    Bambi x
  • allsetuk
    Posts: 8
    Hey bambi, thanks for the post ....very interesting reading. ive spent days reading about this since my sons diagnosis , writing my dissertation has gone out the window!
    i am going to ring the development centre today and hope i can find out more.
    its so stressful what we all go through. Its all so complex and mindblowing isnt it!
  • I bet u have! i am doing my own now, im full of cold but i need to learn more about PDA and i do worry about T being this violent when older, i have read that the violence may always be there. If we can learn things to alleviate things it would help im sure, like the centre said get T a hanging punch bag for when he feels aggressive so it diverts him from him hurting people.

    It is very complex and mind blowing, right now i dont know what i am feeling but it is a lot of different emotions.

    Bambi x
  • webbwebb
    Posts: 2,566
    Hi allsetuk

    Glad to hear someone referred you to this site. I hope we will all be able to help and support you.

    PDA is a very complexed disorder and many of us have found it very difficult to understand and cope with our children. Mainly because the professionals don't know everything about it, they find it hard to diagnose, there is very little written about it and very little help for the parents.

    All the behaviours you have said about your son are very common to children who have PDA.
    They are very controlling
    Manipulative
    Anxious
    Can have very good speech(unless they have Autism as well)
    They avoid doing anything we ask of them
    Impulsive
    Aggressive.......the list can go on.

    Amanda has written some good advice under "supporting a child with PDA" and other written details can be obtained from "The Elizabeth Newson Centre" Nottingham.

    I have found with young children that "symbols" and "Social stories" can help the child to know whats expected of them.(like those used for Autistis children).

    I also find that I have to trick my son into thinking he is in control. For instance......if I need to go to the chemist to pick up a perscription, but I know my son hates the walk to the chemist and finds the whole trip boring, I will say... "Right, you need a haircut." " No no no" he will say. "OK its either the hair cut or we go to the chemist" and he will say "Chemist, Chemist" because he loathes a haircut and now he thinks he is in control of the choice he has just made.
    It sounds cruel but it's not really and he will go to the chemist without any fuss instead of the massive fight we could have had.
    I either do the above or use symbols to give him the choice.

    I have stopped shouting at my son as this never works.

    Having a child with PDA is very hard work and can be very isolating, keep in touch

    Take Care
    Paula
  • allsetuk
    Posts: 8
    thank you for the reply , i cut and pasted a load of information about all this and gave it to my sons teacher as she is so interested in it all and trying to help me to such a great level i cant thank her enough.She said it was a revelation and she felt delighted to have seen this and read about it over the weekend. She like me did not agree with the straightforward aspergers diagnosis and felt it didnt quite fit .....my son seems to tread a fine line of many of these symptoms and many aspergers symptoms, like hiding if touched , spending much time in public hiding everywhere etc ...its incredibly hard to cope with ....nice that we have this place to converse to others :) i have tried a trick this weekend , instead of saying can you do this, i know say will it be this or that and it seems to snap him out and he makes a decision.
  • webbwebb
    Posts: 2,566
    Hi

    So glad to hear your son's teacher is understanding and wants to learn about PDA, many teachers and schools just don't want to listen.
    Aspergers and PDA have some similarities so he could often seem like an Asperger's child or he could have both Asperger's and PDA ?
    My son always used to run off and hide everytime we went out in public places. I've lost count of the number of times I've had to call the secutity guards in the shopping centre.
    However he has almost stopped doing it now(he is 12), this behaviour has been replaced with more anxiety though!
    I also give my son 2 choices, this sometimes works for him.

    Paula
  • allsetuk
    Posts: 8
    hello everyone ...feeling glum ..i seem to be being back to getting regular bad news when i pick my son up ...he was alwasy the one being poked , wound up , prodded and generally made to fidgit and has since learnt to fight back but its getting him into trouble, the way he sees it is that they did it and didnt get told off ......so it must be ok kinda thing , but they all seem a bit slicker at hiding their mischief than him so he has been in trouble twice today , once for pinching someones bottom while standing in a queue and then outside in playtime this particularly rough little boy who is very silly and devious and i really dont like my son playing with ...which i know sounds ridiculous but its just hes really naughty and i think it rubs off , ive been horrified at the deviousness this other boy applies at partys so he looks angelic infront of his parents and then wallops someone when the back is turned......so my son got into major trouble today for throwing bark in the playgroud, i asked him why he was doing it and he said it was the other boys "game "so he was just following instructions and my son has strict instructions from me(from many many past experiences with this boy ...) to walk away and tell a teacher but he says the other boy just keeps chasing him, so he got shouted at today and was apparently distraught for half an hour afterwards..distraught not becuase he was upset at being shouted at but because he had "failed " and been drawn into the other boys badness, how can i tell the teachers to police this ???? they seem to have reverted to making no allowances for my son and saying he has to be treated like everyone else ....but with his treading such a fine line of pda and aspergers symptoms, i am feeling confused and bemused!!!!! ...any advice ????
  • mango69
    Posts: 967
    Hi there Allsetuk,
    I think there is a bit of an attitude that is going to have to change at your son's school before they make any progress - they cannot treat him the same as everyone else because that won't work.Its fine having one teacher who understands his condition but its the other teachers who also need educating It sounds a bit like the situation at my sons last school where the least supervision was in the playground where the members of staff knew him the least and he got himself into difficulties the most. It was one of my biggest bug bears and one of the reasons I changed schools. He is now at a school where he has one to one support and they recognise that the playground can be a really difficult area for him. They have staff in the playground who understand him but they also developed a circle of friends whom he is able to play with and they are supposed to look out for him - Is that feasible at your school? They really do all need to be on board with his diagnosis and try to understand what makes him anxious etc and use his understanding of rules to their advantage. I can see why he was upset and I think its worth pointing out what happens if he plays with that particular boy so they avoid that kind of situation happening. I really think its to do with staffing and attitude though and if neither are present in sufficient quantities its like banging your head against a brick wall sometimes. Its really the worst feeling when your child is sent home and you are made to feel like its your problem and that they cant cope. No one wants to feel abandoned by their school - you need them to be supportive and willing to work things out between you. Is it time for a meeting to discuss all these things or are you already having regular meetings? You are so not alone - I felt just like you are doing and its rubbish but it may be that this school is not the right one unless they are all on board. Don't feel you have to stay with one school - do a bit of research in your area because there may be a much better option for him somewhere else. My son went through 2 mainstreams before the one he is in now and it was hard making the decision to move him but well worth it in the end. This was not without a LOT of meetings though with head and SENCO of both schools trying to make the situation work. Hope this helps, does he have support? Is it a mainstream school? Do they have a good reputation for handling behavioural difficulties well? Does he have a statement?
    Margo
  • allsetuk
    Posts: 8
    my school have told me to stop making a big deal of everything , which i am not i can assure you, i also found out that my son was in trouble for something that was a complete fabrication by one of the other children..his mother confirmed it so i had gone through a fortnight of doubting and worrying my own child when he hadnt done anything .....the hospital also told me they do not recognise pda and that the nearer you live to the east midlands the more likely you are to get a diagnosis , they actually laughed at me!!!!
  • I have sent u a pm and i think it stinks what ur going through, i am going through hell at the mo :(

    Bambi x
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