How to cope with meltdowns?

[LucyCarlyle30]

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

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...

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

I haven't seen Love on the Spectrum @Needanewadventure2021 but I suspect it would make me cry too I'm glad you enjoyed Float too - well maybe 'enjoyed' is the wrong word, but appreciated/ empathised with!

We've had a horrible sickness bug here over the past week or so, DTS1 is actually much nicer when operating at around 75% of full energy I had two days myself of feeling really rough - chills, sweats, sickness, the lot - and him being back at 100% was hard work. I'm dreading the summer holidays as he just doesn't seem to know how to chill out/ relax/ calm down, he has to be on the go ALL THE TIME. There's a few days off which I'll have to take as there's no childcare/ holiday club available and you know what, I'm not looking forward to it at all

The DTs had their school sports day today, obviously very very hot, but I thought DTS1 was ok after a few hours' rest in the afternoon - nope, he came home and had a massive meltdown. I'm writing this whilst sobbing and shaking because he wouldn't/ couldn't stop screaming, shouting, hitting me, throwing things around. DP was ignoring him and when I said snappily "can you actually HELP WITH SOMETHING" he looked at me blankly and said "but I was looking at all the Prime Day deals on my phone!" - yes of course, because that's really important when your DP is getting punched. He's finally taken the DC out to their sports club now and I just feel like walking out for the evening - there's a massive mess to clean up post-meltdown but I'm just too sad and shaky to do it. You know what you said about your DS seeming to have fun and not including you? Mine seems to turn on me whenever something tips him over into meltdown and it feels like he hates me - I don't know how much longer I can cope with him for.

That must be so hard. I'd find that really difficult knowing there was another adult around but not feeling supported.

My DS is deteriorating in my opinion. His sensory needs are sky high and I can only explain it as I am scared he is sending himself mad. This last week has been awful. I've ended up in the out of hours because he hasn't been himself, been pacing visibily anxious. He cannot stop his obsessive behaviours. Cannot sleep during the night but wants to sleep all day. CAMHS believe it is sensory overload. I too believe his needs are escalating and it makes me so sad how hard it is to get him any help. Doctor at the OOH also advised to chase up Paediatrician appointment. Thankfully my son's observations showed he was OK. Doctor advised to get onto all services involved

@Needanewadventure2021 I'm just looking at the ASD/ ADHD course dates for next term now, signing up for a few Zoom workshops. The ones I did in person (pre-Covid) were really helpful but I think all the progress has been erased now

I'm so sorry to hear about your DS's sensory overload, perhaps things will improve over the summer holidays when there isn't so much pressure to get up/ get to school/ do homework etc? Does he enjoy anything like swimming to give him sensory stimulation in another (hopefully more calming) way? There are some specialist SEND groups near me who run sessions over the summer holidays but DTS1 doesn't have a diagnosis so can't go, which is a shame.

Yes, DP is a lazy arse whose idea of discipline is "Just bang their heads together" I'm a MN cliche who says "I'd never have had DC with him if I'd known..."

I'm currently reading The Explosive Child, have you tried it? If not, I'll report back on whether it's any help!

Mines a biter when he gets frustrated. Me, Dad and Big brother all sporting bruises atm.

Got my hair cut short to try and stop him pulling it, but that’s backfired as he just grabs close to the scalp now and that’s more painful.

The worst is when he sees e
me or Dad leave the house. Full meltdown. We have to sneak out the door. Not sustainable long term.

Happy holidays guys!

So my son had his first professional therapy assessment today through SALT. I'm not ashamed to admit that I cried when she said this is not you and I am here to help. I cant diagnosis but I can make a referral to the pathway and I can tell you he is ticking several boxes requiring a referall for Autism. This is off the back of my son breaking up yesterday being told you really need to explore why he is only doing this with you as he isn't doing this at school. He actually isn't only doing this with me but oh well let them believe that. Anyway I cant lie I cried with relief when she said she believed me and will start building her evidence to support a referral to the pathway.

I'm sick of being blamed and made to feel a shitty parent. I'm sick of being labelled an enabler. There was absolutely no way his behaviours today could be ignored. It was intense but im so glad he was observed like he was.

Its not much but I feel so pleased I have someone on my side.

His been ill the last few weeks with what CAMHS believe is sensory overload yet school have still been arsed. Its nice to feels professionals agree something is going on

I'm so pleased your appointment went well @Needanewadventure2021 - as awful as it sounds, I'm sometimes pleased when DTS1 plays up in front of other people as they can tell what I'm going through! He was incredibly whingy and whiny yesterday, I don't think DP believed me but then the moaning was back today, and it got right on DP's nerves

Did they give you any idea of how long it might take for things to start moving now?

@SachiLars DTS1 was a scratcher I know people thought I was (am) a helicopter parent but honestly, he was such a pain when he was smaller, I couldn't leave him near other DC because he'd scratch and hurt them. I once took him to a new toddler group, lovely people running it, plenty of toys... then a little girl snatched a toy off him and he scratched her right on the face. I was mortified and never went back! He is better now (aged 6) but is still very quick to push/ hit if he doesn't get his own way; the ASD specialist said unfortunately it's part of his communication methods, particularly as he had very bad glue ear when little.

Aaarrggghhh, well, the holidays are here, the DTs are at holiday club for a fair chunk of it, I'm hoping DTS1 doesn't find it too much! He's got a bit of a cough and temperature (but no Covid, I did check) and is actually much nicer/ easier to cope with when he's a bit under the weather... usually he's waaaayyyy over the top, DTS1 at 50% capacity is in some ways a lot easier to deal with.

No I hear you 100%. I know my son is capable of masking as it's enabled his school to start building a case to blame me. When I say he was awful Friday, its not bad behaviour, its loud, erratic, obsessive, repetitive, verbally sharp, climbed on everything and kept hurting himself etc. He didn't stop. When his speech and language was assessed he was good at the can you find the, can you point to the, questions. When it came to the why do you think, or tell me the reasons, questions he refused and was quite rude and said oh no not this, this is just like school IM NOT! She ended up completing the assessment with his hands under the running tap as it makes him feel calm. When we left he bolted and I had to chase after him.
I was relieved that she had saw it. He was just like home. To be honest I can understand why he couldn't do it at school after seeing him doing it somewhere else outside of the home. I'm certain if there was another child like him he probably would be showing more at school but there isn't which means he will stand out and he hates anyone looking at him or asking him why his like he is.
She didn't say how long but I got the impression it will be quick. She wants to get her observations done by October in school and home to build her evidence and then make the referral so I'm hoping by the end of the year we will have it. Once he behaves the same around Early Help and CAMHS they too are likely to make their referalls so hopefully it strengthens the whole thing as lack of evidence could get it turned down.

On the run up to the holidays my son was quite ill. Dare I say I missed my energetic child (I didn't) because he went from one extreme to the other. He wasn't just quiet, he was drained and struggled to move and communicate. He was confused, highly emotional. He looked unwell physically, emotionally and mentally, it really did worry me, he had given up. Normally when he is ill his still very much himself. He was bad. I had to phone CAMHS as an emergency as am emergency.

We go away soon and I'm scared taking a runner away to a foreign country on my own. But his my son and this is our family unit. I'm not ashamed of him I just wish people were more understanding of children like him. Because sometimes I believe outside opinions and judgement can make you feel even worse about your life and how you 'cant control your child'.

School told me again the other day, you don't need a label to get support. I just said I know. I'm being very careful what I say now to them and letting the different services go to them rather than me update them as they record the information incorrectly (that has happened alot)! What I wanted to say was it isn't about labelling your child but we all know I won't be taken seriously until he IS officially diagnosed. If it's about support you would be supporting me more and not working against me. It is so ignorant to view it as a label. It give a person an understanding of their identity, they no longer have to believe they are different and weird as my son calls himself. They will know their is a reason. And also from a parents POV especially when you have felt all the resistance I have, it's confirmation that it never was me, I was being a good loving supportive mom afterall, I just made myself a target being a Mom like that.

I'm glad your DS is feeling better (even if he's back to being hard work!) and that his 'bad' behaviour will ultimately help you out in the long run, @Needanewadventure2021 . I'm absolutely drained tonight - DTS1 had a half hour meltdown and I've now spent 2 1/2 hours calming him down post-meltdown. Not even sure why - he went from quietly watching TV and having something to eat, to hitting DTS2 for no reason, to absolute meltdown when told he couldn't do something he already knew he wasn't allowed to do.

I'm really down about it actually; the house is a tip, I'm too fat, DP is bugger all help and I have no chance of sorting everything out to any extent whilst DTS1 is like this. It's like having a 3 year old still and he's nearly 7

Have you been able to identify any more sources of help? There are some local charities/ organisations which have been really helpful for me but there does come a point when you need an official diagnosis to do much more...

I feel so ashamed to admit this @LucyCarlyle30 but today I'm having a 'what about me' day. I sound like a sulky child but seriously what about me. Who is there to help and support me.

We are one week into the summer holidays and I've hated it. I thought being away from school would help calm my son down. Sadly it hasn't. I keep saying he isn't badly behaved. He isn't but I suppose in ways I have to justify his behaviours because I feel we are being criticised. Today for example I had to pop into Aldi. He wasn't happy but I promised him it would be only for a few minutes. His sensory seeking was awful. Climbing, jumping, sliding, touching, running. I'd spent the whole time going round the shop (thank god it wasn't a normal shop) correcting him and asking him to stop, because even though he isn't being naughty I believe he still needs to know he shouldn't be racing around and climbing. We got to the checkout and he was pushing against a crate that started to move. Most people would react and stop. He continued to push which made it start to roll into other shoppers. He didnt stop it as he wanted to fall and hurt himself he said. I snapped and dragged him away and told him off. My son then had a huge meltdown as he tried to sanitize his hands. I snatched it off him and told him he will make his hands sore. I cant tell you how often he is washing or sanitizing now. Its really upsetting me. Anyway I saw eyes on me and a man behind was clearly judging me, possibly for how I had to drag him away or for how I told him off. But I feel you can't win. Children like my son are almost always viewed as 'poorly behaved' to alot of people.

I really dont feel like you can win. You discipline then your too harsh, and if you don't discipline you're building a rod for your own back.

My son's obsessive, repetitive, compulsive behaviours now are making my life hell. So I dread what it is doing to him. He is now refusing to use his hands for anything so I am having to do more and more for him. He is now at the point he uses his forearms to carry things and uses his nose to switch things on.

Today has been a really bad day and his finally fast asleep because he is overloaded.

I dont want to make it about me because it's not but I'm miserable. We go away in less than a week and I'm scared. You should see the state of my son's legs from climbing and falling and we haven't even left the country yet! I have no motivation to pack. My house is a tip as everything I do he undoes. I look fat in everything I try on. I'm mid 30s now and I'm finding it really difficult to lose those 7lbs I need to to feel comfortable. I dont know why it bothers me so much. I'm not big at all. But I'm carrying more on my tummy and thighs now and the thought of being in a bikini is mortifying. Even though I'm still fitting in the bikinis from 3 years ago! Doesn't make sense but I just think it's something to criticise myself about even more. Plus I have not time to look after myself. That's taking its toll. I'm always doing for everyone else.

I really do feel on this journey the self criticism can he debilitating. I feel so alone. But by the sounds of it you don't sound much better off with your other half. Sometimes I think that would he worse. Having someone who should be helping but isn't. It doesn't send a very good message to the kids. I really feel for you.

How are your kids getting on over the holidays so far? I desperately hope our holiday is enjoyable for my son. But he is difficult at the moment with his resistance to do anything. He won't hold my hand and there will be many many times abroad he will be required to. He has to do things a certain way or else he is triggered. When i booked it earlier in the year he wasn't this bad. I dont think I would have booked it if he was. At least at home I have my own comforts around me. In another country I will feel even more alone I think

My son has been asleep since around 3.30-4pm. How stupid of me when I cant get him to sleep during the night so tonight it will be guaranteed I have no sleep. But I have to admit its been nice sorting the house, that washing and being able to get all the toiletries together for holiday.

I've actually just sat and cried as it's safe to do so whilst he is asleep. I really dislike alot at the moment. And the lack of support is really getting to me now. I don't know whether I told you but back in May my son's DLA claim was denied because school said there are no care needs. The level of care I give him now has increased massively from when I submitted the claim back in February. It was hard then but now it is so difficult its making me feel shit that I can't do enough and no one wants to believe me

Does he have sensory breaks in school? (Sorry if this has already been covered, didn’t see it in the thread). He should be, and then things shouldn’t build up so much. A snack could be given at the same time.

My DD has a 10/15 minute one in morning and afternoon and is also free to leave the classroom whenever she needs to, to have a break and to use the sensory toys outside. She also has a discreet communication card which she places on her desk if she feels stress, to alert the teacher to the fact that she needs help or a break. She is 9. We still haven’t got a formal diagnosis or EHCP. I took a SENDIASS rep to every school meeting to get this support in place. It’s a free service.

Re: after school - would it be possible for you to drive instead of walk? We only have a 10 minute walk too, but I don’t do it anymore. I get them straight home, and DD (who is a twin) goes into a different room for quiet alone time and a snack and drink. She can then go to her room, alone, and watch TV or play on her phone for up to an hour (often both at the same time; with her blinds down). Not most people’s idea of relaxing but it actually helps her to regulate and provides routine.

I would give the chocolate everyday as standard, or not at all. It’s hard, but that after school meltdown is not bad behaviour. His brain is already “off line” and threats or punishment won’t help.

just keep breathing yourself; try not to take it personally (easy to say I know!) and tell him you are there for a cuddle when he is ready, however vile he is being. He will calm quicker if you can keep this up, and keeping calm yourself will help to regulate, and eventually the meltdowns should shorten in length.

Also, do you have anything from CAMHS/speech therapist that you can add to DLA claim?

Re: the advice I gave above, that has taken me years to get to by the way, with advice from OT and from CAMHS. It’s exhausting and I used to get so upset ( and still do!) and put punishments in place while she was like that. It is so far from easy to keep calm and to offer cuddles to someone who is shouting nasty things or lashing out, I know that.

Its also horrendous when people don’t believe you and when school aren’t supportive. You aren’t imagining it and you are doing your best.

School arent doing anything for his sensory. They are adamant it's not happening. This is despite him working with the school OT and will be pulled out of class daily from September for therapies. Also I am told regularly the sensory seeking they are observing. It's all day!

I managed to speak to the OT which luckily is the same one who has worked with him in school. Everything I said she was able to explain why he was doing it. They arent meant to offer support without a diagnosis (LA rules) but she has called him in for assessment at the end of August so she can establish what sort of inventions he needs And will report back to school.

Yes it is incredibly hard when no one believes you. However the professionals can explain exactly what is going on and why, and have already mentioned him needing a referral for autism, so that does help making me feel less attacked. But school have made me feel horrendous. So much so I'm become terrified about being accused of fabricating it all.

With regards to the professionals helping with the DLA its only just starting so probably unlikely at this stage. I'm actually at MR stage now. It was declined on the basis school said he had no care needs. This I was able to prove wrong and have supplied evidence to show that my son is on the schools SEND pathway and the therapies he is already receiving. Since the decline though so much has happened. He has become much more difficult in a very upsetting way, he is also no involved with all professional services so i have more evidence there.

I'm unable to do the school runs now. Those who do are only on foot so this cannot be changed unfortunately

I understand the fear of fabricated illness, it’s horrible feeling vulnerable.

I think the SENCO at our school is actively trying to block diagnosis (for other DC,
too, not just mine) in order to prevent extra work and accountability for herself, and the school.

I really do believe that and I dislike her immensely (and there have been very few people in my whole life who I can say I dislike in this way, it is not a usual reaction for me!)

@StaticRatic you've said it perfectly. For me I believe they are trying to cover up their years of failings. Baring in mind I have been on this with them since 2018, it is only from April this year my son has anything extra on his record. This was after I told them they had failed him and were failing me. Since April there have been numerous CPOMS entries logged which I have never been told about. I am horrified to be honest and beyond hurt. The information is my son all over but they have took things massively out of context and never asked for clarification. My son has also been seen to attempt to harm himself. Again never ever been told this! I also noticed in the SAR that details of our conversations were not as i had remembered them and missing alot of what was said. Also a complaint raised was not present in the request either.
I've been trying to move him schools and I will continue to get him placed out there as I really dont think they will help him even after a diagnosis. They have no interest in helping my son

They arent meant to offer support without a diagnosis (LA rules)

This is unlawful.

I also noticed in the SAR that details of our conversations were not as i had remembered them and missing alot of what was said.

This is why you should always follow up verbal conversations with emails, so you have a paper trail should you require it.

Have you investigated transport?

Be careful with SENDIASS. Some are good, but too many repeat the LA’s unlawful policies. Seeking advice from IPSEA and SOSSEN is better.

This is what I was told yesterday by the team. Funding for sensory impairment has been removed so then cannot offer support unless a person has a diagnosis.

I always do everything by email and request the same in return. I was specifically asked to not put anything in writing anymore and always pick up the phone. I continue to put everything in writing despite the telling off I had. Unfortunately I cannot force school to put things in writing. The only time I get a response is when I am telling them I am seeking advice which they don't like and respond inpolitely.

I'm sorry what do you mean re. Transport?

@LucyCarlyle30 hope you are doing OK this week?

You don’t need the school to put anything in writing and you don’t need them to reply. As long as you create the paper trail and include a sentence saying this is your understanding of the conversation and asking them to correct anything they don’t agree with it is sufficient.

Many LAs won’t tell you the truth. Sensory OT isn’t funded on the NHS in many areas even with a diagnosis, but schools can, and must, make their best endeavours to meet a pupil’s sensory needs without a diagnosis. And, sensory OT assessments can be undertaken via EHCNAs and sensory OT provision included in EHCPs - if the NHS can’t or won’t fund the assessments or provision the LA must commission independent providers. It is unlawful for LAs to say they won’t provide support without a diagnosis.

LA transport to and from school.

Oh we live a 5 minute walk from school. He wouldn't qualify.

Thank you for the advice. I do everything in writing. I find it really rude that I barely get a response but you make a good point about the paper trail. I'm really struggling to get past the CPOMS welfare concerns. I did ask why was I never told and of course I didn't get a response. But I stated I wasn't happy about it especially their claims of how he was observed trying to harm himself. Something I have told them he does but they deny! It's mostly towards me though and things that have been totally taken out of context and are untrue.

My experience so far is that everything is coming down to funding and its bloody annoying that so many families are being failed. Thank you for letting me know what school should be doing. Sadly I keep being told there are other children who 'DO HAVE NEEDS'. Honestly I could tell you a few stories of how I have been spoken to.

We go on holiday in a matter of days. I've done very little towards it because this week has been crap. All my time and energy has gone into my son. Its 0.30am and I feel so tired I could cry but he has only just nodded off. So im best take my opportunity before he wakes up. These next three days are going to be horrible. It doesn't help that my son resists pretty much everything we need to do like dress, go out, sort clothes, choose his items for hand luggage. He just cries and runs off. When I booked it back in April things weren't like this. I'd be lying if I said I wasn't worried

@Needanewadventure2021 regarding the CPOMS entries, they aren’t anything to be concerned about by themselves. Most teachers are encouraged to record any little niggles. Eg bumps and bruises, if it’s only one bump and there’s an explanation then no more will be done but if lots of bumps and bruises are happening and a pattern can be identified then action would be taken.

A lot of advise is a result of horrendous cases like poor Daniel Pelka so teachers are encouraged to record everything so no child is missed even if most of the time it turns out to be nothing.

I am surprised that you weren’t contacted about the self harm one. That definitely should be a home contact.

@SachiLars thanks for letting me know. It's more comments my son makes and then becomes confused. Also there is one which I find strange. I cant say exactly what as it will be outing but basically it made out that I was lying, all because my son can't remember timeframes etc and confuses easily.

I understand there are well known cases so I get it but when its about you it comes as a shock. The SH one should definitely have been addressed

@Needanewadventure2021 absolutely, I can imagine it mustn’t feel good.

If you flip it on it’s head and you think that school are paying close attention to what your son says because he’s more vulnerable, then that’s the right thing for them to do.

I can’t imagine that brings you much comfort when you’re feeling under suspicion and I definitely think the school should be communicating with you much more clearly.

@Needanewadventure2021 I hope you are having a lovely time on holiday and that you can forget the issues with school for a while!

@SachiLars our SENCO was off long term sick and no one covered for her I asked for extra help during the second lockdown but she wasn't even WFH. She seems nice enough but what's the point in having a SENCO if (a) they're never there and (b) no one can help at all in their absence?! She's actually moved on now and the school are recruiting so fingers crossed...

It's been a tough week with DTS1 and I'm just a bit sad really, he spent the day with PIL earlier this week and I can tell FIL doesn't like DTS1 as much as he likes DTS2. To be fair he loves him but he just finds DTS1 too much, too loud, too hyperactive etc... all of which can be true although DTS1 is a much sweeter child. There was a meltdown earlier yesterday too after DTS1 got up waaaay too early and was tired out by 10am... sigh. It's still much more like having a toddler than an almost 7 year old.