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DESPARATELY SEEKING ADVICE!!!
  • Hi! I'm new to this site and am looking for some advice about our son. We have had difficulties with his behavior and manageability since around the age of two, and of course numerous thoughts from 'professionals' regarding diagnosis, including A.S.D, etc... the latest of these being Episodic Dyscontrol Syndrome!

    The main problem we have is his non-compliance...with anything! Everything you ask him to do is met with an agressive verbal shouted response. He seems to find it impossible to maintain a 'normal' coversation without seeing everything as apersonal attack! Every conversation thats started he quickly turns so that the focus is on someone else even if they had nothing to do with it in the first place!

    Our other worrying issue is the uncontrollable violence, it's like living with jekyll and hyde! Ben (our son) can go from being extremely placid to full hurricane within seconds, with no obvious cause whatsoever. He can quite easily destroy whichever room he is in whilst trying to self harm, and attack whoever is trying to prevent him from hurting himself or others. As a result the whole family feels as though we are walking on eggshells around him all the time.

    He is very demanding on peoples attention, and doesn't take it too well if someone else is having attention, (difficult to manage seeing as he is one of four children!).

    Here's the best bit, he seems able to manage his behaviour at school, although he does have moderate learning difficulties, he just seems to be 'carried along' by the other kids, 'soaking' everything up that happens during the day and then letting rip when he gets home!

    Ben is 10, almost 11 now and we are at the end of our tether! The way that he is, is putting a great strain on our family, if anyone has any advice or tips that we could try please let me know. We are waiting to be seen by the CAMHS team in our area,(again!) but are feeling let down by the lack of progress being made. Why can no-one understnd the pure hell it is living with a child like this? I understand that it's difficult for the child as well,but Ben doesn't have to keep explaining his behavior to his siblings!!!!!
    PLEASE HELP!!!!!!!
    Sharon :?
  • Pamela
    Posts: 205

    Here's the best bit, he seems able to manage his behaviour at school, although he does have moderate learning difficulties, he just seems to be 'carried along' by the other kids, 'soaking' everything up that happens during the day and then letting rip when he gets home!



    I understand this totally. It took alot of head banging on our part for Olivia's school to sit up and take notice of her PDA. I know it is very difficult for them to see and understand the extreme in her behaviour difference between home and school. Olivia has severe and complex needs, she too is 10, and will be 11 on Friday. I also think at the moment that her behaviours are exasperated by hormone change as she is in the throws of puberty.

    Just wanted to let you know that you really are not as alone as you thought you were on this one!
    Take care
    Pamela
  • Thanks for your reply Pamela, it's good to know someone else knows just what it's like!
    Has Olivia been diagnosed P.D.A? We've had lots of diagnosis thrown at us, the latest being Episodic Dyscontrol Syndrome or Limbic Rage, however reading up on P.D.A the criteria seems to fit Ben completely.
    We moved house in Sept, and are waiting to see the usual professionals, I am wondering whether to ask about the assessment centre in Nottingham, or just see if they are willing to diagnose from his history and their own assessment?
    How does christmas affect Olivia? I know that Ben is more difficult than ever at times of the year when there is lots going on and he is very resistant to changes in his routine!
    How are you managing Olivia? Does she have outburts? Is she on any medication? So many questions, I'm sorry, I hope I haven't offended you!?!
    Take care, and hope to hear from you soon.
    S :wink:
  • Pamela
    Posts: 205
    Hey S just ask away.

    How does christmas affect Olivia? I know that Ben is more difficult than ever at times of the year when there is lots going on and he is very resistant to changes in his routine!
    How are you managing Olivia? Does she have outburts? Is she on any medication? So many questions, I'm sorry, I hope I haven't offended you!?!




    Olivia doesn't really GET christmas...she knows there is a man called Santa, and all she is concerned about is whether or not she can sit on his knee. She can be very sexually inappropriate, so we have to watch her carefully. On Christmas morning she is happy to open her gifts but once that is done she thinks that Christmas is finished! She does have real anxieties over the change of things at school though. Over the last few weeks she has worked herself up over the christmas production. Alot of it is the transitioning from one thing to another, but her teacher says that once she is in the hall and settles she has fun and joins in.
    We can change routines for her, but she needs to be told and then shown in picture symbols, that way she is reassured. School are getting better at doing this also, although it has been an up hill struggle with them at times. You will see somewhere on the forum - possibly under behaviour I have given quite a list of different strategies that we use. They don't always work, so variety and humour are needed.
    Olivia has frequent outbursts of behaviour and aggression, I'm not sure how much longer our doors will cope with the constant banging and thumping or kicking. Olivia was diagnosed with PDA Jan 03 at the Elizabeth Newsome centre. She also has a rare chromosome disorder called IDIC15 ( www.idic15.org ) She isn't on any medication for behaviour/anxieties etc, but she is on a real cocktail of stuff for her epilepsy, and bowel disorder.
    I haven't heard of Episodic Dyscontrol Syndrome or Limbic Rage! Will have to check it out.
    Keep your chin up :wink:
  • Pamela
    Posts: 205
    The strategies are under the parent to parent section
  • Hi this sounds like my son to he is agressive violent only wants to live by his rules,turns around conversations ie he was told off for something ,then tried to turn this around so his brother got the blame for upsetting him,when it was his doing and he got himself worked up.He also shouts is paranoid about people talking about him, we can be commenting on the weather, looking at him,even if some one smiles he gets worked up. He is leaving school this year,he wants to go to college,thjey want to put him in a learner support group,"he isnt going with that bunch of spastics" his words has he fails to see he has problems he thinks he is normal and everybody is just being wrong about him.Im worried sick how he will cope has if time isnt structured he is like a loose cannon.
  • Amanda
    Posts: 281
    Yes, sounds a lot like my Mark too although because of the autism he tends to save the loud and very violent stuff for home usually (Not always)

    I think the hardest part is the fact that he appears so bloody normal and peoples expectations of him are usually way out of his range. I have come to terms with the fact that Mark will never manage on his own and now we are working on his self esteem.

    We have major 'brother' problems and Mark blames his brother for everything he does wrong too because of course, Mark does nothing wrong. :lol:
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