Aggressive Meltdowns - Awaiting assessment

Hello

I have a 6 year old son who has been experiencing behavioural and social problems since around 4yrs. Over the last 2 years, things have become worse and his aggression is escalating.

He is currently awaiting an assessment by cahms and is due to start counselling at school in the New Year. He's a very intelligent boy in a lot of ways and academically he is thriving but he's always had problems with his social ability and controlling his anger. 

He had a sensory assessment done earlier this year which picked up hypo and hypersensitivity and adhd/high functioning asd have been handed about but even the woman who completed his sensory check said he's quite difficult to work out.

The last few weeks things seem to have really stepped up a few notches. I'm assuming the run up to Christmas isn't helping but he's had a violent meltdown pretty much everyday and is very angry towards everything. I have been kicked, punched, bitten, had things thrown at me and he's trashed his bedroom I don't know how many times. We also have a 5 month old and he's becoming very rough and wanting to hurt her which worries me a lot. 

Things seem to have just gone from bad to worse and it's taking it's toll on me and my partner too. I know there are huge waiting lists but it seems inconceivable to me that we're expected to wait for another 1-2 years whilst dealing with this, or not as the case may be. I've been on parenting courses and scoured the internet for help with his anger but nothing seems to work.

Hoping for some support/advice from the group if possible as I am losing the will at the moment and dreading Christmas holidays.

Thank you in advance.
Victoria

Comments

  • Hi Victoria,

    I know exactly where your coming from so I just wanted to say hello and see how you are coping.

    It's really upsetting to see our children behaving so destructively and we so desperatley want to help them feel calm and be able to recogniose and regulate their emotions. It takes a lot of time and a lot of patience - I've been waiting for my son's 'tricky phase' to pass since he was 3 and to be honest - it just hasn't passed and there seems no reason for it. He's just turned 9 and still runs rings round the staff at school. The difficult thing is he's pretty manageable at home but a chaotic, angry and very distructive boy at school. Even very experienced staff are at the end of their tether with him.

    I've found it almost impossible to find support for parents of children with destructive behaviour so I was looking at this webpage for anyone else out there to be honest.

    How have you coped over Christmas and how are the school helping to support your son? Have they had any suggestions to help with his emotional regulation? Is there a Thrive practitioner in your school?

    Anna
  • Hi Anna

    Thanks for taking the time to respond. It's comforting to know you're not alone, I always think talking to other people who are in the same boat helps. 

    My son has been behaving in this way since he was around 4, although looking back there are some little things that may have been linked when he was very little.

    He seems to be the opposite of your little boy in that he's nowhere near as bad at school. It all came to a head in school but I moved him to another one and they've been very understanding and accommodating and have put various strategies in place to help him manage but they still see the aggressive and anxious behaviour from time to time.

    At home its a very different story and over Christmas it's been nothing short of hell if I'm being brutally honest. Surprisingly, Christmas day he was an angel, but my partner and I both agreed to give him a lot more slack as it was going to be a difficult day for him with all the people coming and going and him going to see his dad. 

    However, every other day was horrendous. He had a meltdown everyday at the smallest thing, didn't hear anything we said or asked him to do and trashed his bedroom and several occasions. More recently, he had a very severe episode where he punched me in the head, punched me, but me with a metal pole that he'd got from his football table as he trashed it and other things like biting etc. But the more concerning part was that he hit our 6 month old and bent her fingers back and shouted I wish you hadn't been born. So that really rang alarm bells and I took him back to the doctors who have now referred him down the autism pathway and put an urgent referral back in to CAHMS. I'm hoping they accept this because I'm really starting to worry about how I'm going to cope with his aggression. It sounds ridiculous for a boy of 6 but he can be so intimidating and I worry what he's going to pick up and throw and also worry for the safety of our little girl, his sister, sometimes too.

    So fingers crossed someone listens now. 

    I've also just ordered some more visual aids to help him and going to take a trip to hobby craft to make some things to hopefully make things easier for him to communicate.

    What's happening at your end? Have there been any assessments etc? How was your Christmas? And Happy New Year to you 🙂

    Victoria x
  • Sorry for late reply Victoria, this last week has been quite stressful!

    Your Christmas sounds really very difficult and stressful for you all. I'm sorry to hear that things escalated - you must feel so torn between your two children, needing to protect whilst needing to support is such a juggling act. Did you hear back from CAMHS yet and how are the visual aids working out? It will be interesting to hear how their assessment goes. 

    Our Christmas was fine but since returning to school his behaviour there has been worse than ever and impossible for the staff to deal with. Nothings changed for him over Christmas to cause this mayhem - I think he just finds the school environment so restrictive. He's been extremely rude and refusing to back down about anything. He'll challenge and try to instigate an argument with anyone there - even the head has no authority over him. I had a 2 hour meeting with them this morning and they want to look further into why he's behaving like this as none of their methods are working, in fact he's getting worse. He's out of the classroom and in a staff office most of the time now.

    Today they suggested I contact our GP and request a referral to a paediatrician for an 'ADOS assessment which I've just looked up and is an 'Autism Diagnostic Observation Schedule' - so we're looking at the same as you. They also want me to ask the GP for a referral to CAMHS to check out attachment problems and anything else they can think of. I'm going to get onto this tomorrow.

    I've often thought attachment may be an issue as he had major heart surgery as a tiny baby and he was so unwell I was unable to look after him properly until he was better at about 8 months. We're really close now but perhaps he has a deep seated mistrust of adults he's not close too and so treats them very negatively. Who knows to be honest! I feel like everyone's grasping at straws but at least the school finally seem up for the challenge of finding out what's going on with him instead of just thinking he's naughty which hasn't helped.

    How has your son been this week?

    Happy New Year to you too!

    Anna
  • Hi Anna

    Apologies, I did read this message and then completely forgot to reply! 

    Thank you for your kind words. It has been quite difficult splitting myself between them as although my daughter is only a baby and doesn't need bags of attention, I don't want to end up her being just left to get own devices because my son needs so much time devoted to him - if that makes sense? 

    I've not heard anything from CAHMS yet and still waiting on the ASD referral coming back. I had another meeting with school last week where me, his dad and stepmother, grandparents etc were present and it was just a waste of time. His lead professional has had some personal stuff going on and whilst I do empathise, she seems to have dropped the ball somewhat and as you've said, it's almost as though they're clutching at straws now to try and figure him out. He's quite complex really and has an awful lot of anxiety but there are other "traits" and it's almost like they don't really know what it is so they're just bringing everything in and it really doesn't help me at all.

    So I'm just trying to do my own techniques from things I've read online and hope that it calms him down to a tolerant level! 

    How are things with you, any progress? 

    Victoria 
  • Hi Victoria,

    It's good that you had family support at the school meeting - they can be really daunting!

    Personal problems are a lousy excuse for dropping the ball with regards to your son's support at school. After all - aren't they constantly asking our children to learn coping strategies to deal with their stress?! It's pretty ironic really to ask a small child to do something they aren't even managing to do themselves! Sorry it sounds like I'm being harsh but I'm getting quite tired of the run around I'm getting from so called 'professionals' in schools. 

    I haven't been to the docs yet to ask for the ADOS assessment. I asked the school SENCO if they could provide me with a letter stating that they recommended this for my son. The letter came today and it was the most insensitive and unprofessionally worded letter I've ever seen related to a child struggling at school - and I work with kids with challenging behaviour so I know how delicate an area it is. There's no way I'm giving it to the doctor.

    Like you said, I feel they're just throwing everything at iot because they don't have a clue. They can't admit they don't have a clue though so they keep going round and round the houses. They can't even manage to put any of the suggestions proper professional have made. 6 months ago Education Psychologist suggested my son needs his own small table and simple, clear, repeated instructions to help keep him focused and help with his with his slow processing. They haven't done either of these things and they wonder why he's still very frustrated, distracted and disruptive in class.

    It's good that you've found some techniques online. Are they helping? I took Sam to kids mindfulness for a couple of months and he really liked it. They taught him to breathe slowly and relax, they talked about emotions and techniques to calm - the glitter bottle was our fav: you fill a bottle with water and add some liquid soap and let your child add glitter for all the different positive elements of their character they can think of. Sam added his love of football, snuggling with his cat, being silly and making his friends laugh. When they feel out of control they shake it up to show how crazy their thought feel then they watch the glitter swirl and finally settle to show how if you wait and breathe slowly you mind clams down. When the water is clear you can think clearly again. 
    I explained to the school how it worked and the Ed Psychologist though it was a great idea. Sam took it to school and within a week the school had taken it off him. This is typical of their punitive approach to trying to change his behaviour.

    Sorry I've written an essay but it's so frustrating isn't it?! I wish there was a professional out there with some sense that could help us!

    Hope ypou're well. Have you heard from CAMHS yet?

    Anna
  • Sorry for typos and grammar in that last post!! 
  • Hi Anna

    I completely understand and appreciate your frustration. Whilst George's school do have some good strategies in place for him, I do feel like it's always me pushing the next steps or pointing out when they've forgotten to fulfil promises etc - like i dont have enough to think and worry about then having to point out whats not being done in school too! 

    It's such a shame your sons school are not engaging him well and carrying out the recommendations. As you say, how do they expect a child with additional needs to cope and manage their behaviour if they're not doing their bit to support. I often feel as though it's just a case of well we've promised all of this as it's what they want to hear but then just don't make the time or effort to follow through.

    George was supposed to be getting time every morning on a trampoline to get his energy levels down and calm him for the day ahead but he's been on it twice, once because I said he'd never been on it yet and the second time after I'd mentioned him not going on it in our last TAF. I also got the TAF minutes today from our last meeting and they are so far from what was discussed it's like other people were in the room. I mean, it was an awfully long meeting but it was so vague and inaccurate what they put in it just didn't reflect how bad things are and they also put statements in that weren't true and quite the opposite, making it look almost better than it is. I am so angry because I spend hours and hours telling people about all of this in the hope that one day it'll all click in to place and then I get whitewashed with nonsense. I have a moment of wanting to throw my phone through the window and then bring myself back to earth and remind myself I need to keep pushing. 

    Is your son under the family and wellbeing service yet? Sadly, unless you engage with the SENCO, school nurse etcthe more "important" and crucial professionals won't listen. It's a very long road isn't it, I really do feel for you.

    George had some play therapy sessions and he made the glitter bottle you mentioned and he liked it too, until he took the lid off and emptied it 😂🙈 everything he cherishes is always defaced or ruined, even special photographs he loves. He rips them for some attention and then cried but we just can't get through to him that he doesn't need to ruin his things just because he wants to tell us how he's feeling... he's very literal at times too.

    The visual aids do help, to some extent but only if he's in the right frame of mind to follow them. I made a board for him, got lots of things from hobbycraft and made happy, sad, angry, scared faces etc so he can just point and tell us how he's feeling instead of having to say it (I think that doesn't help his anxiety). I also made a sort of spinning wheel with different options to calm him down so he can just go and spin it when he's angry and it'll land on something and he can do it, as opposed to always thinking of ways to calm down. Just gives him some control over it and makes it fun, distracts him almost from the meltdown.

    Having said that, this last week has been a lot better. We've made a conscious effort to spend a lot more 121 time with him which is hard in the sense of us literally not being able to get on with other things in the evening but it seems to be making him calmer. We can't sustain it forever as he's getting around 80% of our attention every evening after school but I'm hoping we can wind it down and let him go off to his own devices more easily and for longer. 

    We've also allowed him to listen to music at night which goes well until it has to then off, but it won't work overnight I guess. 

    I've found a lot of the autism website are good for strategies and crafty ideas for mood calming etc. Kids yogo is good too, we've done that on a few occasions before bed. Just get them off YouTube and they're like little stories.

    What kinds of things is your son in to? Have you any idea what it may be I.e. add, adhd etc? 

    Vicky x
  • Sorry Anna, yes I got a second rejection letter basically saying we need to open a CAF and engage the school etc. Literally everything we've done for the last 2 years they suggested. So I've made a complaint because they obviously haven't read what the GP put in the referral and I'm sick of getting the run around now. I'm losing my patience with it and getting fed up with just nodding and going with what they say as it appears they don't know their 
  • ...backsides from their elbows!! X
  • Wow Victoria you're doing so much for your son and it sounds like it's paying off which is really encouraging. Like you say though it's almost impossible to sustain that level of attention but I would hope that your son will slowly begin to internalise the ways of calming you are helping him with then you may be able to draw back a bit? I'm saying hoping because I know with my Sam it takes a lot of sustained effort for many months/years to get him to recode (for want of a better word) his negative responses so I always feel like I'm getting nowhere fast - one step forward - two back! 
    Well done though! It's sounds exhausting and it will pay off in the end!

    No-ones mentioned the Family and Wellbeing Service - is it UK wide? In fact the school don't give me any pointers towards other help at all. And like you have experienced, they don't follow through with suggestions. The SENCO suggested Sensory Circuits in school may help Sam over a year ago. She gave me a book to read and everything. It never happened and when I asked about it she said they didn't have the staff - why on earth suggest in then!! It just feels like lip service and documenting things to keep the Ofsted inspectors happy when in practice they are doing very little at all. 

    It's terrible that the minutes did not reflect the discussions you had at the meeting. Are you able to ask for amendments? It's a tricky one isn't it? I'm always worried about being seen as a problem if I don't go along with what the school say and that if I raise the issue of inconsistencies in Sam support it might result in my son getting less support as it may be easier to exclude him rather than put the effort in. I feel like I'm a bit gagged in that respect as I usually attend meeting alone and i'm faced with 3 or 4 staff telling me how terrible Sam is. I might take my mum and dad and a rep from a childrens educational organisation I work with next time.

    I'm honestly not sure what it is with Sam. It could be ADHD but he doesn't exhibit it at home, it could be Autism but he tells jokes, socialises well with children and adults outside of school and has no sensory problems. We have Neurofibromatosis in my family which I found out recently has a 50/50 expression rate in every family member whose parent carries the gene - I carry the gene but it's not expressed. I looked into it further and it can have associated behavioural problems including ADHD and can affect executive function - my doctor has referred him for a genetic test for the gene - still waiting for the test as only guys do it.

    Or maybe he just absolutely hates school!! It's so oppressive and all he does it write, write, write all day. He brought home 13 A4 sized exercise books at the end of Year 3 - every single one full of writing. 3 books for English alone  - I don't even remember doing that much writing at uni!

    I hope your good patch with little George continues - you're doing a brilliant job!

    Anna



  • Hi Anna

    Apologies for the delay, I've had two poorly little ones for the last week so it's been non stop! 

    Some good news yesterday though! I made a complaint about George's referral rejection from CAHMS and they've now agreed to overturn the decision and accept the referral for him to see a psychologist!! I could have cried when I heard them say it. I know there's a lot more in store but it's just another hurdle we've overcome. It's so frustrating and wrong that we have to jump through hoops just to get this type of early intervention that the professionals all reccomend but don't seem to want to give!

    It's awful that you're not getting the support from school and their SENCO, that's what they're there for!! I'd definitely recommend taking a family member or close friend who knows what Sam is like and what you're going through because sometimes it's a very overwhelming meeting and often very emotional. This is your son at the end of the day and, despite everything, they simply have a job to do and don't have the fight or emotional connection that you do so it can be difficult to maintain the fight so to speak, when you're being fired at from all angles. I've taken my mum and sister before because I do forget things and it also gives me courage to speak out more.

    I know what you mean regarding the speaking out part though, I don't want to ruffle feathers by any means but at the same time, I'm not going to let someone feed me the script and not do anything to help. I just cant sit by and let George get worse and closer to high school every year, when he won't have a cat in hell's chance at that stage. I think I may have already made a name for myself now (in a word) but I'm quite forwsrd and demanding if I have to be, nature of the job Haha, so I'll tread on people's toes if they're not giving him what he needs. Unfortunately it seems to be the only time you manage to get things done, I just feel sorry for those who don't necessarily know how to navigate the system in that way because they'll suffer in silence.

    Re the family and wellbeing service, I'm not entirely sure if its national but there will most definitely be a similar set up in most councils, it'll probably just differ from area to area. Where abouts are you, I can have a look if you like? Where are you with the CAF and assessments etc? Have you been to the GP? 

    George has been poorly as I say so hes not been too testing but the cheek and defiance is slowly returning so I sent him back to school today 😂

    If there's anything you need help with I'm more than happy to assist where I can!! I'm definitely not an expert and all kids are different but I know what it's like to not know where to start, I still don't at times, so a helping hand is always good! 

    Keep going, you're his castle, he's lucky to have you!

    Vicky x
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