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You all seem to cope so well!
  • skylacain
    Posts: 9
    I have trawled this forum since 3am looking for a thread to sooth my guilt but everyone seems to cope so well.

    The last few months have been hellish in our house. After a suggested diagnosis of PDA my husband and I researched and worked out the best ways of helping our 11yr old daughter. Things were going well and I felt we had a handle on the situation. Only to have the volume turned up....the list of triggers is longer than my arm right now, senior school, being bullied, residential trips (she didn't go in the end) all sorts of stuff to avoid. However her behaviour is beyond the pale.

    Weeks of horrific meltdowns have destroyed everything and anything we do. Our very sensitive 7yr old is terrified of her and is often found hiding with her hands over her ears sobbing.
    My husband and I have a wonderful marriage and yet she has pushed us to argue. No longer are there moments that remind me what a beautiful person she is, it is all just spiteful, aggressive, persistent misery. The more we try to help her and provide the right environment the worse it gets.

    So, just the standard PDA household I hear you all cry but that isn't the point of my post!
    I am laid back placid yogi and meditation fanatic up all night because I lost it with her...I lost my cool, I was not in control, I didn't put in measures to sooth her anxiety, I didn't allow her the space to process. No, instead I raged, I screamed and cried and lashed out at this bully, I told her just how she makes me feel, I announced every part of how hard she is to live with.

    I know the cause of her meltdown, I understand what was behind it but last night it was more than I could take. I am sick of being bullied by my own child, sick of being told I'm useless, a moron, an idiot. Anxiety induced or not...I don't care, its more than I can manage right now.

    However who is the mug here? me, awake all night gripped in guilt and sickened by my pathetic inability to cope? Or her ? who raged back, shouted louder, threatened to ring childline, informed me that she would continue to train me like the dog she thinks I am and toddled off to bed quite happily safe in the knowledge she had 'won' again! Her words not mine.

    I took to the forum in the night to look for solace but all I found were parents worried for their children, people talking about measures that I already use. Please tell me I'm not the only one to do it this badly. Surely other parents must be pushed beyond what they can manage?
  • Moose
    Posts: 1,843
    I can assure you that you are not alone, I suspect all of us find times when we are not coping, certainly I know I do.

    Several years ago now I stopped coping in a spectacular way, running a business and trying to support my son and family resulted in a nervous breakdown where I just 'shut down' (almost catatonic) and was unable to cope at all. It happened literally overnight, transformed from cast iron coper to the epitome of non coper. It was a deep, deep hole to be in and took a long time to get out of.

    Things are much improved now, but this is in a relative, not absolute way. I guess we cope as a family unit, not necessarily individually. By this I mean we have largely learnt which scenarios each parent copes or deals with best. Through this we can handle things in a more appropriate way.
    Well, of course this is theory rather than practice and there are times when this goes pear shaped and either one of us is baited or goaded into a situation where we loose our cool, rant, rave, are not in control.......basically make the same mistakes as you did last night!
    And yes, this too can cause arguments between my wife and I, as the 'other half' will clearly see what the offending member of the parental team did wrong.

    Generally, we know our strengths and weaknesses, but this does not prevent us getting involved in situations that we would be best steering clear of. We may have the knowledge required, but not always the emotional control and wade in 'all guns blazing' when our Achilles heel has been touched. Even as we open our mouths we question "why did I say that?" knowing where it will lead, but emotional overload prevents us stepping back from the brink.

    Try not to beat yourself up about it, although I too am no stranger to a sleepless night caused by in-depth self examination. Raising a child with PDA is a massive challenge that pulls you every way possible, 'stretched' would be an understatement! Sometimes you will break and sometimes you need to break. I think too we have to realise that there will be phases when our children change and we find ourselves struggling to adjust to the new look manifestation of PDA.

    We went through a particularly turbulent time over the end of 2013 start of 2014, our son seemed to change, certainly the dynamics did and it was a period where we were only hanging on by our finger nails. Our son seemed to regress and problems that we thought were banished to history reappeared. It's damned hard going over the same old ground again, you feel defeated and could easily quit because you have nothing left to give.
    We have survived the storm and come out the other side, just about. I'll not pretend that it was an easy ride or that it's perfect now, but much better.
  • sinkorswim
    Posts: 565
    skylain
    have you read jane sherwins blog about her daughter mollie? one of her entries is about how children with pda read emotions and she suggests they give strong messages to hope they are heard but jane ponders whether they only notice our strong over the top emotions...
    you are not alone in losing it....I have been very frightened when I have lost it....
    hope your storm settles soon....
  • Moose
    Posts: 1,843
    I too would recommend Jane's blog "http://understandingpda.com/"

    The other thing I wanted to add is that PDA is still new to you, if I recall correctly it was first suggested to you fairly recently. the light bulb moment is still fairly fresh.
    For us, the time leading up to the diagnosis and period afterwards, probably marked our hardest years. I am not too good at recalling exact time frames, but probably was a year or so either side of diagnosis. Yep, a frighteningly long haul. Diagnosis was the watershed, but did not lead to a quick fix. It's a little like turning an oil tanker around, there is too much momentum and mass to turn around on a sixpence.

    I think too, that a child who has been struggling for a long time, without understanding, can develop difficulties that above and beyond the core problems.
    I know you have said that your daughter has appeared to cope in school, but perhaps this 'masking' has taken it's toll and she has acquired/developed compensatory behaviours.
    During our most difficult period with our son, he seemed to develop a callous/menacing side that was qualitatively different to the behaviour we had witnessed before. Also there were other emotional/behavioural challenges that were new territory for us and him, it was more than just PDA and what I refer to as PDA+.

    Part of the recovery or turnaround is undoing these 'added extras', getting back to 'just' PDA. PDA is complex enough, but with other issues on top the problems are even harder to unravel. I wonder if this is what you are experiencing? If so, I am sure that if you can hang on in there, you will be rewarded.
    Getting school on board is an important part of this, it's a tall order to achieve improvements on your own.
  • elve
    Posts: 182
    I think you do a marvelous job not hitting a child like this (and when I was a child with PDA, my parents were happy to dish it out!) So don't beat yourself up for screaming your head off and saying mean things to them occasionally - you are only human, and this isn't something you asked for or expected when you started a family. I remember making my mother cry every single day at that age - which considering my dad beat me for it, goes to show how much 'into the zone' a child with PDA gets - they don't fear consequences - they just need to win the battle. The fact that I am 52 and can still remember arguments I had when I was 11yrs old also shows how difficult it is for these children to forgive and forget too - they are vengeful if they feel they have been wronged in the past, long after we, the parents, have forgotten the incident.

    My son bullied me and his dad for years (he's 20 now). He too would pick up the phone to call the police, if I so much as raised my voice! He would also ALWAYS have to have the last word in an argument - so let them. I think we set too much store by being treated as adults, with respect, by our children, our subordinates. This is what infuriates a child with PDA - they see themselves as our equals, and want to be free of our demands (whilst enjoying the privileges of living in our homes!) If a child has spent all day in school behaving themselves, then they are at the end of their tether really, and have sacrificed enough - so they really can't take further demands when they get home, hoping for sanctuary.

    But yes - they are brutal, and perceptive - they can perceive your weak points, store it away in their memory, then drag it out in the middle of an argument, to totally slay you! Very calculating and Machiavellian. So don't give them any ammunition to use. I remember I would feel guilty for shouting at my son, and a few hours later I'd apologise to him....at which point he'd see me as the weak one, and go for the kill (so as to speak - not actually, as I threw all the knives out when he was 5yrs old!) They don't fight fair, and they never give in, and at that moment, 'winning' is all that matters to them. If you refuse to fight though, they can't either. I would only ever correct him or thwart him over something really important - otherwise just let it go - it's not worth it. Swearing and bad manners, being rude, lazy, selfish, doing as he pleased - none of those things were worth fighting over, so I just let it go. Violence, aggression, and disturbing the neighbours were things I didn't tolerate, but other than that I didn't make any demands on him.

    Even so we fought a lot of the time, as he's naturally aggressive, and spent most of his childhood screaming in frustration over something! (thus potentially disturbing our very tolerant neighbours) I don't know if your daughter plays video games, but my son sublimated a lot of his aggression and competitive spirit (winning an argument is a competitive sport for some people) into video games. Result was a lot of screaming! But I'd say 'play it quietly or don't play it at all' bracing myself for a long drawn out battle before uttering those words. He did eventually manage to master his screaming, because he was forced to (or I'd switch off the electricity) They can control themselves if they have a good incentive, so I've found, but it doesn't happen until they are mid-teens - they are just too 'young' to manage it before then. 'Young' as in 6 years younger than their chronological age, socially and emotionally. So they have no conscience over hurting people at age 11, any more than a 5 year old child has a conscience.

    It is very hard with a child of 11, to treat them with the indulgence you'd show a 5 year old, but at the same time the deference you'd show to another adult. Emotionally and socially, they can't take the demands placed on an 11yr old - but intellectually they think they are our equals, if not our superiors! It's hard - so cut yourself some slack if you're not 100% perfect parent all the time - I used to aim to be 'good enough' as a parent - because I believe that 'good enough' is really good enough xxx
  • skylacain
    Posts: 9
    I would like to thank everyone for their comments. We are struggling through a pretty rough time at the moment and your comments have been very helpful. Moose your insightful remarks have brought as much clarity as they always seem to and I am very grateful. It seems the most important thing to keep in mind is how transient these things can be and that no phase lasts forever.
  • mandymoo
    Posts: 38
    We are also going through a particularly difficult phase with our daughter. She actually seems to have been worse since the school holidays have started. Today she has said some horrible things & when I suggested she spend some time away from us,she stated that she was staying so she could make life difficult! She has been very up & down & can't understand why her siblings don't want to be around her following her outbursts. Another new thing is that she has suddenly become very lazy, will not brush her hair/teeth or get dressed. We have had an assessment at the Elizabeth Newson Centre & are awaiting the report. I'm sorry to hear that you are having a tough time too. It is a great support to hear that there are other people who are going/gone through similar situations (not that you would wish this on anyone, especially our children!) I just wish that I knew the best way to react. It is very hard to understand that this is coming from anxiety when it comes out as aggression. Stay strong!
  • Sorry to hear that you are having such a tough time. Just though I'd continue the post as it seems we are in the same position. It has been comforting in an ironic way to know that we are not alone. Our son seems to have regressed over the summer in that he now has lost all inhibitions and kicks off and is rude regardless of where we are or who we are with. Maybe I need to acquire a thicker skin but he can be so disrespectful that I just no longer know what to do. It doesn't even seem that he is in a high anxiety state, more that it's habit. I feel our lives are so negative. We also have sleepless night reliving the day and how to make things better the next. This then falls apart after 15mins the next day and the cycle starts again. Just feel sad!

    Reading all your posts gives us strength so thank you.
  • Benbear
    Posts: 3
    You could be writing about our home right now... Holidays are always a nightmare here as it all gets a little out of control. No real advice to offer but you are not alone.
  • Hello, this is my first time here on this forum. My daughter is 6 and doesn't have a diagnosis of PDA but the SENco sent home a leaflet about it at the end of term and it is the first thing I have read that seems to 'fit' her behaviour, I am convinced that she has PDA. We have struggled with her behaviour on and off since she was 18 months old and 'managed' it, in various ways over the years, having positive times and negative times, but hoping that she would 'grow out of it'. Everything you are all saying rings so true to our family life, I have always felt that she was 'different' and I just instinctively know that she has PDA. What I'm finding really tricky is what to do next. She has recently become a lot more physically aggressive, hitting, kicking, biting, scratching me and my husband and being very threatening to her 4 year old sister e.g. 'I'm going to get a knife and cut your head off'. I am 8 months pregnant and finding this really hard to deal with, both physically and emotionally and am really worried about what life will be like when I have a little baby to look after. I have to go into another room if she becomes aggressive, just to protect myself and her sister. The other day she made massive dents in our living room door by repeatedly hitting it with a photo frame. I've read lots of helpful stuff on the PDA website, and we are trying some of the strategies, with varying degrees of success, but obviously we haven't even started the process of diagnosis. I just wondered what people would recommend, what is the best route to ask for help - should I start with my GP? or wait until the beginning of next term and speak to my SENco? Any advice would be gratefully received. Thank you.
  • sinkorswim
    Posts: 565
    Hi madelinejoy,
    I can recommend a private ed psyc who can recommend other good private professionals if this might be an option for you....I have become very disillusioned with the NHS
    Let me know I you would like his contact details....he is based near Sheffield now.
    HTH
  • Moose
    Posts: 1,843
    madaleinejoy, welcome to the forum.

    as you may have guessed from sinkorswim's post, the NHS does not come up trumps for everyone. To be frank, it is quite a lottery whether your local services recognise PDA. On the other hand this may be your only option if funding private assessments are out of the question.
    There is some guidance on seeking an assessment on our website. http://www.pdasociety.org.uk/families/diagnosing-pda
  • webbwebb
    Posts: 2,566
    Hi madaleinejoy

    Welcome to the PDA forum.

    I am really pleased to hear that the SENCO has suggested PDA to you and that you have found this website & forum. I hope you find lots of support here.

    The best place to start is your GP. Start by telling him/her that the school SENCO has suggested your daughter has PDA, which is a Developmental Disorder on the Autistic Spectrum and could your daughter be referred to a Paediatrician.

    When your daughter goes back to school have a word with the SENCO and tell her you also feel your daughter has PDA and have asked your GP for a refral to a Paediatrician. Ask the SENCO if the Educational Psychologist can assess your daughters educational needs to see if she needs extra support in school.

    The best book to read is "Understanding Pathological Demand Avoidance in Children" published by Jessica Kingsley.

    I hope that over time you will be able to put some of the PDA strategies into practice, it is hard to change the way we parent children, it doesn't always come naturally but keep trying and her behaviour/meltdowns may reduce.

    There are also Conferences on PDA - see the News & Events section.

    Take Care
    Paula

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