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Here are some suggested organisations that offer expert advice on special needs.

How to cope with meltdowns?
23

LucyCarlyle30 · 10/05/2022 16:37

NC for this as I'm frankly ashamed to admit how bad DTS1's behaviour can be Sad

Twin boys aged 6.5, separate classes at school. DTS1 has been assessed before as borderline ASD but his nursery teacher didn't think he was, and (in general) his behaviour is good at school, but the meltdowns at home... Shock Shock

Today he had a bad day at school and gave his brother a hard kick as soon as he came out. Usually he has a small treat when he gets out, chocolate or similar, he's been told before that bad behaviour = no treat. So, kicking = no treat (DTS2 didn't get one either, for winding him up).

The whole 10 minute walk home he screamed at me, spat at me, hit me, told me he'd kill me. Demanded his treat, had an absolute meltdown when told no. Kept saying things like "when I'm a bigger boy I'll kill you for doing that", "I'm not going to stop hurting you, you won't give me my chocolate", "I wish you'd just go away and live somewhere else", etc.

By the time we'd got home I was in shock, started shaking and sobbing once I'd finally managed to put him somewhere to calm down. It's now an hour later and I still can't even look at him without panicking, he's long past the meltdown and is busy playing in the garden.

How did it come to this, my beautiful baby who I love so much? Will he end up really hurting and killing me in years to come? I could see him doing it as well, when the red mist descends there's nothing anyone can do except physically restraining him, which obviously I won't be able to do one day. I'm just at a loss, and still in shock

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SusiePevensie · 10/05/2022 16:55

Ok. First of all don't catastrophise. His behaviour today doesn't tell you anything about what he'll be like as a teen, never mind as an adult.

Second. Rewards/punishments don't work for all kids. Hell, they don't work for all adults. They can just pile on pressure, however well-intentioned.

Third - lots of autistic kids hold it together at school and fall apart at home - it's the coke bottle effect.

Fourth - figuring out the right way forward is hard. I've found that the Explosive Child approach works best for us - you start with assuming that the kid would do well if they could, so if they don't it isn't because they won't, it's because they can't. Then you work WITH them to understand what it was they couldn't cope with and how they can develop strategies to cope with it. It's slow and it's hard work (for them as well as for you) but it works for us. Ymmv. Worth looking into anyway.

Sorry if this sounds bossy! I'm aiming for reassuring & helpful...

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LucyCarlyle30 · 10/05/2022 21:23

Hi @SusiePevensie - that's really helpful, thank you so much Smile

DTS1 is finally asleep now, he did calm down a bit at bedtime and kept telling me he loved me, I think it finally got through how upset I was. He's so naturally hyper that anything which tips him over the edge (tiredness, bad day at school, perceived unfairness etc) sends him into a complete screaming rage.

I told DP when he got home and his 'helpful' response was "well, he never does that with me" Hmm - I pointed out that (a) he very rarely picks them up from school which is when DTS1 is at his worst, (b) he's certainly seen DTS1 have meltdowns before, and (c) this one was particularly bad because DTS1 was massively overtired (DP was doing bedtime and let him stay up FAR too late).

I realised that I was projecting a bit as ex-DP (not the DT's dad) was very verbally abusive, used to scream and scream at me for things that weren't my fault, and I was always worried that it would turn to physical abuse - I stayed for much longer than I should have done as he'd always be so apologetic afterwards and promise it wouldn't happen again. I finally plucked up the courage to leave him and have never regretted it - then when I get screamed at again like this, it brings it right back Sad

I'll definitely have a look at the book, thank you for the recommendation. In the meantime I'm just trying to decompress!

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RaisingAgent · 11/05/2022 22:40

What you describe re after school meltdowns sounds is exactly as the pp said, it's the coke bottle effect from using so much energy to hold his anxiety and difficulties in at school, that it explodes as soon as he's safe (because you are his safe place).

You describe him being very hyper most of the time so it only takes a relatively small thing to tip him over.

He could be carrying very high levels of anxiety each day and his nervous system is responding to every input around him.

Do you know about sensory strategies? Google Falkirk sensory guide, there's a pdf online which another poster on this board always used to recommend to people, it's excellent.

What does your son do to decompress? Does he have any special interests?

You could try having something visual related to his special interests ready for him to look at / hold the moment he's out of the school gate. If he'll accept a favourite snack, hand it over immediately. Sucky yoghurt pouches are good as they give the child propriceptive input through the effort to suck. Also crunchy snacks help eg apple or carrot sticks. Or very cold snack eg ice lolly (again, sucking can help).

If the snack and interest work they may reduce the immediate pressure in him a bit, enough to get home, but then the rest of the pressure has to come out. Sensory stuff is amazing for this. One of my children bounces for long periods on mini trampoline whilst listening to favourite song on headphones over and again. Other child swings for long periods whilst humming and gazing into space. Let them do their own thing, whatever they need, for as long as they want. Don't add any expectations, school has been enough. Playdough, theraputty, water play, sensory play with bags of dry rice, shaving foam.

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RaisingAgent · 11/05/2022 22:41

All my paragraphs disappeared!

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LucyCarlyle30 · 15/05/2022 23:07

Thank you so much @RaisingAgent and sorry for taking ages to respond, I just cannot use the MN app at all now for quick replies!!

I think you're completely right, DTS1 does need more decompression time after school. Quite often we're rushing around a bit to get to an activity (he likes all the activities - his choice to go - but it does mean we're constantly on the go some days!) whereas if he could sit for an hour or so and watch a bit of TV/ play in the garden he'd be calmer. DP is allowing both DC far too much screen time at the moment and it's starting to impact on DTS1's sleep (he's terrible at getting to sleep at the best of times) so from tomorrow I'm cutting that right back too.

We had a good talk after the (very stressful!) incident the other day and he told me he has nightmares about being very hungry Shock which is probably another reason why withholding his after school snack set him off. I had no idea, he is of course never starved, but he's such a fussy eater that sometimes it's difficult to find something he'll actually have - so if we're out and about, DTS2 will happily have a sandwich/ jacket potato whereas DTS1 is always looking for the dreaded chicken nuggets and chips.

He also needs regular meals/ snacks or he gets hangry very quickly - after DP's smug comment about "he never does it with me around" DTS1 then had a spectacular meltdown again yesterday morning, because DP had offered to make him pancakes for breakfast and then faffed around for bloody ages till DTS1 was completely pushed over the edge. I guess at least I understood it better this time...

Thank you again Smile

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Scratchybaby · 16/05/2022 11:46

@RaisingAgent your response with the sensory strategies was so helpful, thank you. I'm lurking to pick up tips for my son, who's younger but I think starting to display those sorts of behaviours as more is being asked of him during the day to pay attention, cooperate, etc and these tips are great :)

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RaisingAgent · 16/05/2022 12:10

I know exactly the scenario you describe Lucy about the kids being too hungry to regulate, it happens here a lot.

Does your dTS1 have packed lunch or school meals? Because my son is likewise restricted in what he'll eat, he couldn't reliably get enough calories in him to get through the afternoon without tears and meltdowns. Switched to packed lunches and it solved the problem instantly. Now after 2 years of packed lunches he's trying school lunches again and we send him with a hefty "snack" in case he can't eat any of the lunch, school allow him the snack instead.

Honestly, try not to stress about him eating a variety of food, nuggests and chips have protein and carbs, it's fine. I spent so long stressing about my sons slightly restricted eating , then when my daughter's difficulties emerged I realised that my son was relatively great with food! My daughter is so anxious she can only eat 9 foods, all cold, mostly beige. Literally no meat, fish, potato, pasta, rice - nothing. Just cold beige foods. And even then, the dietician says she's getting almost all her nutritional needs from those foods (she has an iron supplement and a multi vit, but it's a different story whether she'll accept it or not!)

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RaisingAgent · 16/05/2022 12:12

@Scratchybaby glad anything said was helpful, how old is your son? I am an enthusiast for sensory work as I saw it make such a big impact for my son. Sometimes it's hit and miss though, and a sensory strategy that one child loves will do nothing for another, so trial and error.

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Scratchybaby · 16/05/2022 13:15

He's nearly 3.5yo, attends nursery and has some 1:1 support to help him with some key skills that he's not naturally picking up by osmosis. So he has some demands put on him, but they're appropriate for a 3yo if you see what I mean :) His speech is still mainly echolalia and if he's angry or overwhelmed he doesn't have the right words to reach for quite yet so it comes out in whining or hitting (mainly me and sometimes his dad - thankfully not at nursery so far). But I know this behaviour is him communicating to me that he's not ok about something - I just need to decode what the issue is!

The lack of more functional speech makes spotting his sensory issues a little more difficult but I'm really trying to work them out and try out different things. I totally appreciate what you're saying about every kid having their own set of needs, so any and all tips are worth a try to experiment until we find out what works! I feel like he could really fly if I could just crack some of these sensory distractions that are getting in the way of the learning he's very clearly capable of.

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BestZebbie · 16/05/2022 15:15

Sometimes things are said to shock, not for their literal meanings.

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LucyCarlyle30 · 16/05/2022 21:53

Thank you for the food info @RaisingAgent - DTS1 will eat one vegetable (peas) as well as his nuggets & chips, but anything else is completely out of the question, so I'm glad to hear it's not as bad for him as I feared! He does take a packed lunch to school (beige foods again, but at least he eats them) and is always given the option of fruit, veg etc, but just won't even try them. I've even taken him on fussy eater courses with no luck! Your DD eating only 9 foods must be very hard work too?

@Scratchybaby DTS1 had very little speech too until he had his grommets put in at 4, has your DS had a hearing test to rule out any issues? It turned out that DTS1 had severe glue ear - hence very limited hearing in one ear and not great in the other - plus poor eyesight. Once he had his grommets in and glasses on he did much better! His speech still isn't quite up to where it should be and he can be quite a whiny child - it frustrates him when people don't understand him straight away - but once we'd sorted out the medical issues, other things became a lot easier.

I think you're right @BestZebbie , and it really did shock me at the time!

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Needanewadventure2021 · 16/05/2022 23:04

Well this made me emotional as I am very familiar with the coke bottle effect at home. My DS is generally well behaved at school, once in a while I'll have some bad feedback but the child he is out of school and at home can be evil. I often cry as I've been told it's me as it only happens at home. He masks at school exceptionally well, is very loud, and dominant, it's as though he plays a character. He is very hyper. It takes very little to push him over the edge but when he pops I cant believe he can be so horrible to me. His anger is starting to progress. That worries me alot. It makes me sad how many Mom's face this battle of children behaving differently if different settings so it can't be happening. I hate to admit it but my sweet boy can be evil towards me. No one would believe it

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LucyCarlyle30 · 19/05/2022 23:20

I'm so sorry to hear how upset you are over your DS @Needanewadventure2021 - how old is he? Does he have any understanding that what he's doing/ saying to you is really upsetting? DTS1 is always quite shamefaced after his meltdowns, but honestly, when the red mist descends he seems to have zero control Sad

We had another one today actually, he didn't eat his snack after football and then got so hangry that he was screaming I WANT MY DINNER even when his dinner was... on the table in front of him Confused

I forgot to say @Scratchybaby that on one of the SEN courses I went on, they said ASD children tend to have higher pitched voices, and hence they can come across as whiny even when they're not... I try to remember that when DTS1 is whingier and whinier than ever! They also said that on average ASD children are 1/3 of their age behind their peers in emotional development, again true for DTS1, it often feels like he's only 4ish and coming out of the terrible threes stage. I hope things are improving with your DS?

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Needanewadventure2021 · 20/05/2022 06:23

@LucyCarlyle30 yes once he realises I then get the other side. The emotions and the cries of how much he hates himself which I also find hard. He is a masker so I literally get everything at home times 100!!!! It's interesting you mentioned about the high pitched voice. My son often whines to the extreme. He voice always becomes very high pitched. He comes across like he is hard done by alot. Also if he feels you are making fun of him (which is never the case as he can't take a joke) or when he is being blamed for something he hasn't done the shrieking panicky meltdowns are shocking. I'll never forget the one. A friend blamed him for pushing over another child when it was the childs brother. As I didn't see it and the child was crying I went to tell mine off. I dont think anyone, or me expected his reaction. It stopped everyone in their tracks it was so loud and bad. I didnt even apologise because my focus was trying to calm him down and stop him from hitting out. I just said to the Mom's there is no way he did this. He then wouldn't speak to anyone for 2 days. My son is several years behind his peers in most things. Especially emotionally

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LucyCarlyle30 · 24/05/2022 22:00

How are things with your DS @Needanewadventure2021? DTS1 was actually reasonably ok over the weekend but again today he was told 'no' and again there was a meltdown Sad in fact I ended up sobbing as he was just so bloody awful - he was in such a tantrum with me for saying that he had to wash his hands before eating his snack (he'd been playing outside and they were filthy!) that he threw a marble at me, and it's chipped my tooth. To be fair I don't think he was actually aiming at me - he's terrible at throwing, if he'd been trying to then he'd have missed by a mile! - but that's not the point, I've tried to make him see that if he did that in a temper to another child then he could hit them in the eye and really hurt them, etc.

I'm trying hard to identify the triggers - screen time, tiredness and hunger are definitely included - but today for example, it simply seemed to be me saying 'no' (or more precisely "yes but you need to wash your hands first"). How do I combat that on things which are non-negotiable?

I've even been to look at local parenting courses but of course the ones which would be useful aren't running at the moment. Aaarrrgghhh.

Just bloody fed up really. And tired. And don't want to do this any more.

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Needanewadventure2021 · 24/05/2022 22:48

@LucyCarlyle30 I'm so sorry to hear this. That must have been such a shock and though not intentional it is a massive eye opener to what could happen. I hope you are ok?
Mine was aggressive over the weekend and hit me. He snaps out of it pretty quickly. And then I get the upset and him saying sorry. He switches so quickly. It was over him being called to dinner. He was evil and once he starts it's not very nice. 'No' can also be a trigger for him too but not much. I've learnt to ignore him as best I can and walk away. The fact that he can be agressive towards me is both worrying and embarrassing. As long as I leave him safe I leave him to work through things himself.

His needs are very much present which I am addressing at a meeting in school this week but fortunately no major meltdowns for us these last few days other than the being called for dinner. He was complaining of being starving as well but boy did he go mad at me for doing his dinner.

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LucyCarlyle30 · 24/05/2022 23:17

Sorry that your DS had an episode too @Needanewadventure2021! DTS1 is always very shamefaced if I say I'll have to tell his teacher what he's done, he knows it's not acceptable behaviour, but when the red mist is on him then there is absolutely no reasoning with him. This time I explained that if he'd thrown a stone at a child in school and hurt them then of course he'd be straight in front of the headteacher, and what would he tell them about why he'd done it? He has no idea really, it's like it's acceptable to do these things to me but no-one else (DP sometimes, but not to the same extent).

I hope your meeting at school goes well, are they supportive in general?

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Needanewadventure2021 · 24/05/2022 23:44

No which is why I'm at complaint stage. They didn't support my claim for dla as they don't see the same behaviours in school. Bearing in mind there have been ongoing concerns constantly addressed and lots of tears from me they haven't wanted to know. They have started agreeing certain behaviours are displayed in school and promised support but have either done very little or not even implemented it at all. I feel they have failed him. Each year he is struggling more and now the aggression has started I do place a certain amount of blame on them for being so dismissive towards my cries for help.

My son's aggression has started to frighten me. The first time it did I remember I had to walk away. He was stood clenched fists and just looking at me like I was his target. Usually I'd challenge that behaviour but there was something about it that made me turn and walk away. I remember crying to school two days later that my son had actually scared me, and how I dont understand where this anger comes from and why its as bad as it is, and how I was scared eventually his anger will make its way into school. I was told this is so strange as this isn't happening in school. Honestly so much has gone on that I'd be typing for days and you'd be appalled.

I often wonder if my son would be different had support been put in place sooner. But now I'll never know. But I really think if nothing is done he will hurt me eventually. I hear him gaming with his mates. He has such a lovely bunch of friends but the way he speaks to them at times makes me cringe. Very dominant and overpowering and unwilling to try their way etc. He has to control every situation. But I worry that will lose him his friends and if that happened would he start being aggressive towards them for not wanting to be friends any more? They love him and I hope they understand he is abit different but as they grow up are they going to be less tolerant of it? I'm lucky he has such a lovely group of friends and most of the time he treats them with so much love and care. But then if something goes off plan he changes and I worry how they view him when he just shuts them out, kicks them from the team and even blocks them sometimes.

So many worries go through my mind. I used to think his meltdowns and behaviours were manageable. But they arent. I'm treading on egg shells most of the time. Could he become so isolated eventually that things escalate further

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lemonbalmandminttea · 10/06/2022 22:58

My daughter (junior school age) definitely expriences the 'coke effect'.

I feel like I am treading on eggshells - some days are okay but other days she can be angry and emotional particularly at the end of the school day. She is definitely behind emotionally and we have done some work on labelling emotions and going through the fact that having negative emotions is okay. My daughter can be angry one moment tearful the next and I have not witnessed this in her peers, it is like she is on a rollercoaster of emotions. I use screen time after school in attempt to help her regulate (allowed a certain time), dd seems to use this time to decompress. She is doing a lot more extra-curricular activities now too.

I think my daughter is vulnerable in that she is only just beginning to understand stranger danger (she has gone through a phase of hugging complete strangers and being over-familiar with people she doesn't know and we are trying new strategies to replace this).

DD seems to be okay academic wise, she has caught up with her reading but her spelling still lags (we don't think she is dyslexic).

Paeiatrics have kicked out the referral from GP, saying we need to go via an educational pyschologist via SENDCO. The system doesn't seem to be joined up - if paediatrics didn't feel they could help why couldn't they pass the referral onto the correct department? I honestly feel like I've been going around in circles and would like some kind of diagnosis with the hope that a targeted approach of help might ensue.The only thing that has been put in place so far, is a keyworker figure (who is brilliant) but the keyworker figure is frequently busy.

I keep hoping things will improve by themselves. I think they are but very, very slowly and mood regulation seems a big issue

I feel very isolated in trying to cope and understand what is happening - again a diagnosis might help me to access a relevant support group. I'm not sure there is enough evidence at school to flag a problem...the meltdowns seem to occur pre-dominantly after school. There is also an issue that dd doesn't always listen to the teacher/interrupts - she really doesn't like to be told what to do and seems to like a high degree of control. When dd was in primary, I seemed to be called in a lot about certain behaviours, this seems to have calmed a lot but now the meltdowns have errupted. All of this is negatively impacting my own mental health. I am able to remain calm in the face of the meltdowns but I think I'm surpressing things quite a bit and the fact that accessing help is not straight forward, is certainly aggrevating everything.

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LucyCarlyle30 · 15/06/2022 22:44

Hi @lemonbalmandminttea, I'm so sorry to read about the issues you're having with your DD. Has the school SENCO been able to help you with anything? As far as I know the assessment is done partly by the parent(s) and partly by the school, but that may only be in my area. Things are very behind too due to Covid, not enough resources to go round, but hopefully that will improve soon. Does your DD have any hobbies/ interests to keep her encouraged outside school? I keep thinking about enrolling DTS1 in a drama class, I think he'd really enjoy something like that, but he doesn't have the attention span to do it for more than an hour or so and all the local ones seem to be longer than that! Do have a look at your local council webpage too - district and county level - if you haven't already, mine are useful at signposting people to the resources available. I find it really useful to contact SEN groups for help, often you don't need to have a specific diagnosis (DTS1 hasn't), they will just offer general advice.

How is your DS doing @Needanewadventure2021 ? Have the school been any more helpful? I know gaming is what kids do nowadays to be sociable (oh crikey, that makes me sound old!) but I dread DTS1 and/ or DTS2 getting into it, neither of them react well to screen time. I have enough issues with their behaviour and sleep without that!

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Needanewadventure2021 · 20/06/2022 23:38

@LucyCarlyle30 sorry for the delay in responding. I've been so busy lately with everything.

All services are now in place which is a relief but it's a huge waiting game.

Relationship with school has completely broke down following recent events so I am looking to move my child. I'm really struggling to move forward with what's been said to me.

Completing his MR was annoyingly long and repetitive. I still don't understand why I had to do it anyway as everything was detailed in his original claim. It's shocking just how much I do for him still. I'm hoping they change their decision but if they don't I'm really pleased with the evidence and statements I have to support my son through the diagnosis process.

In terms of him, his still massively struggling unfortunately. I'm amazed he has any skin left on his hands they amount he is washing them! His starting to struggle to mask as school and his starting to have a few really bad days where they are seeing another side. I was always told he wouldn't be able to mask forever! I still get the worst at home but I believe that is because home and me are his safety and where/who he feels most comfortable. It's all still draining though, so unbelievably draining.

My son's screen time is surprisingly good considering he would be on it all day if he could! If he is asked to get off it he may have a moan but always comes off when asked. He very rarely refuses. It gets turned off at the wall and he seems fine with that. I still have the behaviour when he is playing though which I find horrendous and embarrassing. Honestly I cringe.

I'm so so tired and desperately wish I could get on top of things and be able to support him better.

How's yours?

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LucyCarlyle30 · 26/06/2022 23:10

I'm so sorry to hear about your DS's school @Needanewadventure2021 - what outcome are you hoping for, are you asking for better support where he is or ideally a more supportive school? The SENCO at our school was off sick for a long time, that didn't help when I was massively struggling with DS during lockdown Sad

I'm glad your DS is ok with limiting screen time, it definitely makes a massive difference for my DS. DP is immensely lazy and would let the DC be on their tablets 24/7 if he could, rather than do any actual parenting Hmm but it has such a bad effect on DTS1 - less concentration, worse sleep etc.

The DC had a party yesterday, one of DTS1's classmates - it made me see that he isn't that different in some respects (6yo boys don't tend to listen whether NT or not!), but his attention span is much shorter than even some of the younger siblings', he can't even sit and eat a snack without getting overexcited. And it isn't that there's anything 'wrong' with that, but I do worry that some of the other parents just see him as a complete pain Sad there are two birthday parties coming up in his class - both boys, Alfie and Bobby (not real names!) - Alfie's party he isn't too bothered about, they've never been friends particularly, but Bobby he really thought was a good friend. He hasn't been invited to either and is quite upset; I've tried explaining that he won't be able to go to all the parties, they might only be having small groups of friends etc, but my heart does hurt for him.

Have you seen the Disney short 'Float'? I cry every time I watch it - I do try to remember it whenever I'm feeling short tempered with DTS1 for his 'issues'!

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Needanewadventure2021 · Today 22:49

I haven't seen Float no. I will have to.

It's funny you say that. I know I only talk about the bad but there is a side to my DS that is absolutely wonderful. Kind, caring, hilarious. . Young for his age but I find that very sweet when everyone around him is growing much faster. It isn't all bad but the bad is terrible and very distressing for him and myself.

My heads a mess at the moment. I've had a dreadful few weeks but had a really lovely early help assessment the other day and it was so lovely to have someone on my side and get it. I want school to get it but they dont. I'm sick of having to educate then on masking etc but finally I have a member of staff at school who believes me. And I cant tell you how wonderful that feels. It may make very little difference but for me it's so comforting knowing someone believes me.

I've applied to the LA for an EHC assessment which I have asked the school to support me on. I hope they will but I'm doubtful. I won't stop though. Not now.

I really feel for your son. He must feel so confused. And for you it must be devastating. I worry too how he comes across to friends. He has to play an very dominant overly loud character. He can be abit much. I know it's how he manages situations but it'd hard not to worry how others see him. And it would hurt me so much if he lost his friends for how he is

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