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Experiences and advice needed pls!
  • HannahH29
    Posts: 48
    This is my first time posting on this forum, but I have found the advice and information invaluable over the last few months. I have suspected for a few years that my son has PDA, always knowing there was something going on from very little. No major issues when he was a baby but a strong need to control from 18months or before with him telling me ‘ you not boss, I boss’ at age 2! As so many have said my partner and I have adapted our lives so much over the years to accommodate our son’s little quirks but general routine ( especially bathing and getting dressed) have always been an issue with excuses ‘ my legs don’t work’ or going floppy and needing to be picked up before he ‘ falls in the lava’ ( he still does this now...). My son is now five and started reception in sept 2018. Things seemed to be ok, but then at Christmas he exploded. Every single night he comes home and has meltdown after meltdown. He is impulsive, provokes me and his dad, picks on his brothers and does things like stripping naked and urinating or spitting food out/ throwing water/ brother toys and generally hitting, kicking, biting, smacking pullling hair and anything else he can get away with. He moans about going into school ( especially PE even though he loves it, because ‘ it’s annoying I have to get dressed twice’) but he will go but seems to have the bottle of Coke effect at home. It is difficult as he is the most wonderful charming and hilarious child, adores role play and his current obsession is DC superhero girls especially Wonder Woman, which he absorbs himself in. He is so single minded and fixated on what he wants to do there is no room for deviation. Dinner times are pointless, he won’t eat and even when he does ( he can eat wherever he wants and I cook him what he will eat) he often throws it on the floor. Bath times are nearly twice a week if we can and get only has to brush teeth once. He doesn’t bother with dressing much at the weekend, preferring to wear only pj shorts or bottoms ( he is never cold). We completed the EDA questionnaire and he scored above the threshold. We also contacted help for psychology and completed their screening and they felt there was enough to warrant going straight to assessment, so we have this booked for end of April. We have also got an appointment with dietician and on waiting list to see NHS paeds. I have a few questions and would be so so grateful of any replies and help! We have 1 year old twins that we are having to safeguard daily due to their brothers meltdowns and are beyond struggling with it all and how to help this anxious little boy.

    1.) I feel that one of my son’s triggers are his own body’s demands- having to go to toilet, to eat etc as this is where we see impulsive reactions after he has to give into these needs. How do you manage/ support these when they are physiological demands as such and not ones that I can control or eliminate!

    2.) My son’s responses are almost so impulsive that they are becoming wild and unpredictable- he switches in the blink of an eye but often I feel they are provoking us and almost asking for us to intervene so he can have a meltdown to let it out- does this make sense or is this not PDA?!

    3.) My son wakes at 4.30am and will not go back to sleep- he only wants me ( mostly to do everything and dad just won’t do) and sings DC superhero girls at the top of his voice, when I remind him his brothers are asleep or distract him, he does it all the more, sometimes some of his actions seem vindictive and purposeful but he adores his brothers l- could it be that it’s a demand he won’t allow himself to sleep but needs to get up and therefore everyone must get up? He seems to have no empathy for his brothers needing sleep- even when there have been times where they have been unwell and needed to sleep longer as they were poorly, he doesn’t seem to get that it’s not nice to wake them. Maybe I’m viewing this too negatively but I’m confused about this one! I know consequences don’t work and they certainly don’t work for my son, but I was wondering about a tick or sticker chart for every morning he is able to stay in bed and read or watch his iPad- having said that we have tried every type of reward chart in the past and they have had little to no impact. I guess this would be just another demand, but I need him to realise it’s not fair to wake his baby brothers.

    4.) School report no real issues ( apart from some head rolling and body rolling- which I think is stimming) on the carpet. He is well liked and popular but in my eyes friendships and effort is very one sided and not from my son’s side! He refuses and avoids some tasks at school making excuses t go to toilet but not actually going or taking jumper off, but for the most part he does as he’s told. He almost adopts a different persona but can then switch to being wild and almost feral at home which ends in meltdown and extreme physical aggression. I have reduced demands completely at home and he does barely anything, I have also been logging and recording incidents and asked school to start a home school book to see if there is any correlation. Interestingly when school recently reduced demands for one day( although he still had to sit on the carpet) we had one of the worst meltdowns ever?! I guess I’m wondering what else we can do. He has some sensory processing issues ( noises and smells are awful for him) and often sensory seeks.

    Am I on the right track with PDA?! Sometimes I worry that we have gone completely wrong somewhere and it’s all our fault!! I’m sorry for the rambling, I think that’s how I feel at the moment and nothing makes sense. I feel daily like I am in an abusive relationship with my son and guilt for the lack of positive interaction we have as I’m often in risk management or safeguarding mode.

    Any advice is much appreciated x
  • HannahH29
    Posts: 48
    Apologies for the complete lack of punctuation in this post!
  • MarSet
    Posts: 38
    Hi HannaH29,
    Im all new to PDA and my son is going through the ASD diagnosis at the moment. The way he is seems to fit the PDA profile very well. I will try to help with a couple of your points.

    1: Personal Hygiene is a big problem for my son and often feel like we have to force him to clean himself, 1 constant issue is going to the toilet, every time we sat down for a meal he would need to get up and go for a wee half way through and often get angry about it, I found that suggesting he might want to go to the toilet before I dish tea up has been helpful. The outcome can vary depending on what he's doing at the time. Maybe just popping and asking him every so often if he wants to go to the toilet could be useful.

    2: My sons initail responses are always the same (with varying degrees of aggresion) with shouting and foul language Its what happens afterwards that get impulsive and wild. Ive learnt over the last few months to respond calmly to him but that doesn't always work and I do still from time to time end up shouting. It does sometimes seem like he's goading me for a reaction and there are times when he won't stop until he gets a reaction.

    3: Mine doesn't get up at any particular time apart from the weekend when he sets his alarm for 6 am so he can sneak extra time on his xbox. He shows no regard for anybody else in the house because he gets angry at the game (because it or somebody he's playing with aren't doing what he expects) and shouts, screams and bang his controllers often waking everybody else up. He shows no remorse/empathy for anybody but has a constant expectation that we have to show it to him always. As for reward/sticker charts, my son will only honour those if he's completely in charge of them and if we put on something he didn't like he would alter it. he's even taken them down in the past and torn them up right in are faces then puts his own up. Ive found they cause far more problems than they have solved.

    Finally I've in the past likened his behaviour to narcissism he has to be in control of everything and everybody around him and its all about him, he shows no consideration for anybody but himself. We've spent years thinking he was just been a selfish egotistical brat and unfortunately given consequences accordingly that just have never worked and caused so many more issues. School wise he's on and off and its always something really small that ends up something really big ( he says he dropped his pen on the floor, teacher says he threw it, he doesn't agree) you get told off and accept it. my son will turn it into an exclusion because he won't/can't accept he did something wrong.

    I often think ive got it all wrong and done everything wrong, what you need to remind yourself of is your doing your very best and in a seemingly impossible situation, it wears us down more than probably anything else could and can cause us to have mental conditions from the stress and trauma. I suffer now from depression/anxiety I get panic attacks and am constantly nervous.
    And yes it does feel like an abusive relationship emotionally/physiologically and physically as well, you need to make sure you make some time for yourself just to relax and calm. I know sometimes that seems impossible but its very very necessary because its a long road were travelling and you've got to try and keep your health physical/emotional in good condition too.

    Hope this is at least in some way helpful

  • HannahH29
    Posts: 48
    Hi MarSet,

    Thank you so much for taking the time to reply with your experiences, there are definately things you say there that resonate and it’s so helpful to know others are going through similar issues. We have just got back from the dietician where my son told me ‘ I don’t want to be here, I want to go’ he spent the whole time asking repetitively if it was lunchtime/ had they ( his class) gone out for lunch playtime. He started kicking me in the waiting room and I got some sympathetic glances from the reception ( it was the child development centre so I guess they see this sort of thing often!) Whilst in with the dietician, my son ‘switiched’ and started covering my mouth, jumping on me, leaping on the furntture and eventually, hitting, smackiing, kicking and biting me, all whilst I was trying to listen to this lady. It was so difficult and I’m sure she thought I needed to control him better but I know it was because he was terribly anxious about going.

    I did think strangely that I hope he behaves like this at our assessment in April as at least it’s a snapshot of what we have at home. I used to think he would only save his behaviours for home but it indicates that he doesn’t care about masking anywhere other than school right now.

    Thanks so much again for your advice :)
  • June67
    Posts: 808
    Hi Hannah,
    So much of what you are going through is so familiar, my youngest was diagnosed with ASD/PDA a few months ago and we have had many similar issues. It is still very early days for us but we have found reducing stress and allowing control of less important things is working to help make life more bearable. Obviously your situation is very challenging at the moment as he is young and struggling to regulate his emotions something that is often a challenge for young children who do not have ASD/PDA issues and you have the added worry of keeping your little ones safe. You have those priorities right, keeping everyone safe and trying to adapt to him as much as is practical, you are getting assessments and diagnosis early compared to us, which is a good thing. The earlier they are understood the sooner help can be provided hopefully. He sounds like he could have quite a few sensory issues which will impact on his behaviour all of his responses to all that his body is feeling are strong indicators of this but you will need to know what they are and see if you can adapt things for him. My son is also always hot and we are often seen driving around with cool air or car windows open in the middle of winter to keep the peace (the rest of us are fully wrapped up!). Once you have a diagnosis it will be necessary to get school on board with suitable strategies etc. as his outbursts on coming home indicate he is struggling to settle in school but holding everything in all day. We have transition routines in place that help our son leave the stress of school behind (many have actually come from him), such as having a snack in the car on the way home from school, taking off uniform and getting into comfy clothes ( yes the dreaded PJs) as soon as we get home, chilling out with a favourite toy, video or activity with no questions about school from me until he is ready to talk. They don't always work but we do generally have a calm home coming. The outburst on the day school reduced demands could have been because he was thrown that it was different and didn't quite know what to do with himself, often changes need to be more gradual to allow our children to adapt.
    Eating-wise you may need to be creative with how and when he eats or what he eats from, my son spent a long time only eating from a 'special' blue plate that he was given as a gift and would only eat small bites while distracted watching favourite tv shows, everything needed to be separate on the plate and organised in even numbers, he has phases where he will eat the same meal for weeks then suddenly stop. Rather stressful but he usually switched to something else soon. We tried to be healthy but it isn't always possible but often an obsession with biscuits will be followed by one for cucumber sticks or carrots, milk in small quantities is helpful for maintaining nutrition and jelly kids vitamins can also be hidden in a bag of haribo etc quite successfully if you feel it's necessary to do such subterfuge. (obviously only the recommended dose)
    In short don't panic you generally find a way to get things done, it's just your own unique creative way.

    Hope the assessment goes well, good luck,

  • HannahH29
    Posts: 48
    Hi June,

    Thank you so much for posting and reassuring me that it is ok and that I am not going completely mad! I could have cried with relief to discover this forum and the support for fellow parents just struggling to get through each day. I will try out some the things you have suggested- especially the haribo thing- that’s awesome! I definately see my son going through stages of eating the same thing and then boring himself of eating it continually. I am scared about the assessment that he will put on his charming act and talk quite happily about superheroes but I hear good things about help for psychology.

    I definately agree June that my son has sensory issues and he needs an OT assessment as he’s hyper mobile all over and it causes him pain regularly. I would find it so useful to find out exactly what he needs to top up his sensory cup as such- all I know is constant swinging at the park is a good one for him!

    Thank you again to you both for your replies, it has given me much reassurance :)

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