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Please help
  • HannahH29
    Posts: 44
    Hi everyone,

    I have come to accept that I need to admit that things are not good and have got progressively worse for many months. I’ve been putting on a face thinking I’m ‘dealing with it’ and ‘it’s all fine’ but it’s not and I have been in tears most nights. I need some advice about what to do going forward because things cannot stay the same as they are for my son and our family. A was diagnosed in April and we had implemented PDA strategies for a long time. At the weekends, things are better as we can manage his demand level and reduce his anxieties. When he is at school, he comes home and it’s just unbearable. He can be aggressive and purposefully provocative but he demonstrates a certain behaviour that worries me. A suddenly switches ( which I know is common in PDA) and will just flip into doing something aggressive towards us or tipping food plates over, throwing water/ toys etc. He is hyperactive, crazed and almost there is nothing behind his eyes if that makes sense. He just takes on this persona of someone hellbent on causing destruction. He is wild and almost feral. He will purposefully target his younger brothers kicking at them or trying to grab them in dangerous ways and any attempts to prevent him doing this cause him to laugh hysterically. When removed ( which we have to do for his brothers safety) he charges out of the room slamming doors trying to get to them. We have tried it other ways of removing them but he will then try to follow them. I know this is all in response to a perceived demand or even a delayed demand, but it is impossible to anticipate this when I don’t know what has happened in the day ( he refuses to tell me, just that it’s been a sad day) and I have two other small children to attend to their needs. If I don’t meet his demands instantly, this again causes major problems and hunger, thirst and sensory difficulties are triggers

    How the hell do I manage this? Is this common PDA type behaviours and if so, how do other people manage these bursts of impulsive dangerous behaviours? We are lost and despite the NHS paediatrician agreeing that A is autistic and willing to diagnose, we are desperate for help but don’t know where to turn. In Hertfordshire there is a great service called PALMs but we are in Essex and I can’t find a similar service. I need someone to come in and observe A’s behaviours and help us with strategies to manage them.

    I am sorry for such a long post but I have got to start asking for help instead of pretending it’s all fine when it is anything but. Really appreciate any comments or advice xxxx
  • RhanHRhanH
    Posts: 1,070
    Hi HannahH29, I'm sorry to hear how tricky things are for you at the moment and I really do understand that sudden switch as our daughter does that too. We also have an older daughter who is usually the target of any physical attacks and whom we obviously have to keep safe.

    We've learnt over time to look for the triggers and then try to reduce or eliminate them, which then reduces the explosions as the anxiety is lowered and the emotions are being kept more in check and managed at a lower level with agreed self-regulation techniques.

    If the outbursts are reguarlarly occuring after school could this be as result of masking during the day, and the release being needed? Is it possible to work with school and your son to identify what the perceived difficulties are and then try to put steps in place to help manage them more effectively during the day which would hopefuly reduce the coke bottle explosion effect when he gets home?

    We have personally found Ross Green's book, The Explosive Child, very helpful in giving us strategies to identify our daughter's needs and also working with her collaboratively to resolve them. Reducing our own expections as to the level of maturity we expect our daughter to have and bringing things back to what we know she can cope with has also helped enormously.

    I'm sure you may already have come across it, but here is a link to our pages for families, which includes information on strategies, meltdowns and siblings to name a few: https://www.pdasociety.org.uk/families. If you wanted to chat your situation through you would also be welcome to make an appointment via our enquiry line: https://www.pdasociety.org.uk/contact


    Please do keep posting and I'm sure others will be along soon with some additional ideas.
  • Em83Em83
    Posts: 40
    Hi HannahH29. I can really empathise with you.. the sudden switch from seemingly fine to out of control aggression and violence. We often say our son has gone or that there is no one there as he gets this blank look in his eyes as well which is terrifying for us to see and for him no doubt to be so out of control. Your son sounds a lot like mine, our occupational therapist said my son needed his emotions to come out in a very aggressive manner and they suggested lots of heavy push/pull, physical games and exercises for him. We try to help him get out his aggression in safer ways.. punching gym balls, swinging, climbing etc and find a heavy sensory diet helps with this. However we still get the outbursts especially around demands, and it feels like he is constantly ready to explode. We just keep trying different things, try to keep his sensory needs met, his emotions as regulated as we can or at least a safe space to let out his emotions and aggression. We also use medication to help his anxiety and are about to start a new one for irritability. This is something we have struggled with however we need to keep my son safe and his younger sister as well as those around him. We hope that in time we can help him to manage his own emotions without the need for medication.
    I do the same and try to pretend all is fine or just keep going on, but asking for help is the best thing you can do and although it is hard be honest and frank with the doctors. They do not always get how difficult things are but keep telling them and take back up if needs be from other people who experience the same!

    Em x
  • June67
    Posts: 731
    Hi Hannah, we also have the switching although it is a bit lower for us at present. When our don was in year 6 things got really bad and school initially were denying any issue until I broke down on them one day after the struggle to get him there had got to be too much. Despite denying a problem as he was at that time undiagnosed they found a member of staff to do a daily debrief and tomorrow's timetable with him so he had a chance to say anything that was good or bad about the day and know what was happening the next day so he could see if there were things to look forward to. It was a small thing that made a difference to him despite the small demand on him. He didn't have to talk he could just draw or write and then maybe talk. He then bought the paper and timetable home so we could look at it with him.
  • HannahH29
    Posts: 44
    Thank you so much to you all for posting, it has given me some reassurance and strength this week- makes me worried that basically most of what has worked is what you have all implemented yourselves independently rather than external support? Everything is so specific for PDA and it’s so frustrating to constantly fight to be told ‘ oh he’s not that autistic’ or ‘oh but it must be minor autism’ or ‘he’s fine at school’. Makes my blood boil- yeah come and see us around 3-7pm every night when we are treading on eggshells trying to reduce anything so he can just about cope before a meltdown erupts. I know you guys know exactly what I’m talking about. I appreciate you commenting so much and will have a check out of the Explosive child book and see if we can implement some things. Got a meeting with school before end of term to discuss needs and transition, so will def mention some of the things you have suggested June xxx
  • HannahH29
    Posts: 44
    7pm cut off sounds jolly actually in comparison to some people- it’s only that the melatonin gets into his system
    And by this point he’s exhausted. Although we have had to up it to two tablets in two weeks so I don’t know if it will always work...
  • HannahH29
    Posts: 44
    Thanks Em for the reassurance that this is all just the PDA journey! I know what you mean about the medication, it’s hard to wrangle with the decision but like you say when the safety aspect is considered for the child, siblings ( and parents) it’s a no brainier xx
  • Rubytuesday
    Posts: 224
    Hi Hannah, this sounds very similar to my daughter when she was at school... We ended up taking her out of school, and although this has brought other issues with it the end of the day meltdowns are few and far between now. As others have suggested, could you talk to his school? Maybe set up a meeting with the SENCo - although he may present as 'fine' in school (my daughter did) there may well be issues if he's so explosive after school. Maybe school could put some things in place e.g. a timeout card if he needs a break, some sensory activities (like fiddle toys), less demands around homework etc. xx
  • HannahH29
    Posts: 44
    You are so right- when he is not at school, although there can be issues, these are far less than when he returns from school. The problem is as well he’s got some elements of classic autism in that ‘ the rules are rules’ etc. If it’s law that you go to school, then that’s what you do. He told me often feels sad or worried or things annoy him ( like sensory stuff) or social difficulties arise but he said ‘ I just have to get on with it’. Almost like he knows it is difficult but he’s self imposed no choice but to put up with it. I have got a meeting coming up soon with school and We have recently had back a private OT report which basically states that my son is not developmentally ready for school and has high seeking behaviours so needs lots of sensory input at school and home. I will be asking them what provision they can put in place as it’s got to be consistent across home and school. I like the time out card, thank you guys for all your ideas as I can take this to school to see what they can put in place. Did the school ever understand your daughters difficulties RubyTuesday or recognise them or did they think you were making a mountain out of a molehill ( I often feel that this is thought of me!) because she was ‘fine’ at school? X
  • HannahH29
    Posts: 44
    Also when did you take her out of school? X
  • Rubytuesday
    Posts: 224
    Sadly the school really didn’t recognise my daughter’s difficulties. She wasn’t diagnosed at the time, but we had our suspicions. I was told she was manipulating me etc... We took her out of school in Year 7 when it all became too much and her mental health was really suffering. She was diagnosed shortly after this. School is such a difficult environment for our children. Hope your meeting goes well. Have the school got the local advisory teaching service involved? They should have a specialist teacher who can advise on ASD.
  • webbwebb
    Posts: 2,528
    Hi HannahH29

    It does sound like his time in school makes him very anxious and frustrated, so much so that he comes out of school extremely wound up and it takes from 3-7pm for him to vent all his anxiety and frustration on his family :(
    Then with melatonin and exhaustion cause bed/sleep.

    I think he needs some support in school? Less demands, more sensory breaks in a quiet space, social skills sessions ??? Most LA's have an Autism Outreach Team who can come into school to give the school advice - ask the SENCO to make a referral.

    There is a great organisation called Side BY Side Coaching that can really help families to find strategies to manage their child and family, experienced team who understand PDA!
    - https://sidebysidecoaching.com/

    Sessions are held via Skype (this is a private organisation).
  • HannahH29
    Posts: 44
    So sorry i haven’t been on for a few days, it’s been a bit crazy. Our poor kids, this time of year must be horrendous winding down to the holidays and all the changes. Thank you so much Webb- I will certainly look into Side by Side coaching this is exactly what I was trying to find. I’m so grateful. It’s very frustrating because we have just moved schools- he was at a large academically high achieving school and our local one was much smaller and a wonderful ethos. It was tough for him to move in the last few weeks but we did it so he could make friends and settle and feel better about moving to year one. No doubt this has also exacerbated things. I met with the senco who was very nice and accommodating when I explained things and I sent her both his diagnostic report and the OT report and was told they could easily build in movement breaks etc. However none of this has happened yet- he has been there nearly a month. I feel a little bit like it’s end of term and they are letting him settle and I get all that but it’s frustrating. I understand they are trying to get to know him but the reports give a very clear picture. The teacher told me that the senco wants to meet nearer the end of term to discuss things but haven’t heard anything so I am going to chase tomorrow and ring up or ask to be called back. I would imagine they are thinking they can start afresh come next school year. I will certainly be asking that they refer to outreach. We are waiting for the NHS paed to diagnose as he has said he agrees with the diagnosis given privately so maybe they need that before they can refer to some other services. It’s just so difficult and my son tells me nothing at all about school. If I even ask him how was his day, he said not good and don’t ask me any more questions xx
  • HannahH29
    Posts: 44
    i also feel like they think he is fine as he doesn’t display any behavioural difficulties at school at all. I wonder that they think I’m making it all appear worse than it is!
  • webbwebb
    Posts: 2,528
    Hi, you know you are not making it up and the Reports are evidence that he has some very real Special Educational Needs!
    Chase the SENCO and make sure you get a meeting to talk about how they can put in some support for him.

    Moving school may have unsettle him, so more anxiety will mean more behaviours/meltdowns at home :(

    When my son was in his teenage years and more able to communicate his feelings, he told me that he hated explaining why he had had bad days at school - He said that if he began telling me about the bad things that happened, he would get really angry, like he was reliving the feelings and emotions of he bad event.
    So he preferred not to tell me :(
  • Rubytuesday
    Posts: 224
    Hi Hannah,
    I'm sorry you're having such a difficult time. I'm a teacher and things are pretty manic at this time of year. Hopefully school will put more things in place for him in September - I would definitely chase that meeting though. My daughter massively masked at school, they never saw any issues until she started school refusing. Although I suspect that if they'd really looked they would have seen the signs of anxiety... I was asked by the school SENCO if I thought she could just be manipulating me (and that was after diagnosis!) Not long to go till the end of term thank goodness xx
  • HannahH29
    Posts: 44
    I cannot believe that was said to you RubyTuesday that’s shocking- how on earth can we expect to be understood or for our children’s needs to be understood when this is the kind of suggestion. It makes me sad because even with a diagnosis there is still an expectation on our children to ‘behave neurotypically’ and fit into everyone else’s world rather than people meet them halfway. I just wonder if my son will always mask. In a weird way I would like him to show that side of him at school so they understand. When were diagnosed at help for psychology they said it’s common for children with this profile to manage the first few years of school and then to stop managing or begin school refusing. I just wonder how long it took before your children’s masks began to slip? I know you mentioned RubyTuesday that your daughter masked throughout primary school.

    Thank you so much to all of you for replying xxx
  • Em83Em83
    Posts: 40
    My son only lasted till y1 before the mask slipped but he held it together in a nurture unit at the school for longer. He is nearly 9 now and feels comfortable enough to mask less at his current school if at all depending on the staff / pupils who are around. My daughter still masks but she is just going into y2 in a special school starting sept. Both of them will mask still depending on the environment around them especially if playing with neurotypical peers. If they are being their selves for better or for worse I know they are comfortable.

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