Endless meltdowns

[NiceCupOfTeaAndASitDown]

I wonder if someone can help me understand or prevent meltdowns? DS is 3, shows symptoms of triad of impairments plus sensory and co-ordination issues and is awaiting a multidisciplinary assessment.

He's been unwell this week so at home rather than nursery. It could just be that things are different/unscheduled and he's been feeling rough but OMG the meltdowns have been something else. He wants the TV on all the time, I try and restrict it because it makes him aggressive and violent - but I say no to anything (and it doesn't seem to matter how I word that no) and all hell breaks loose.

yesterday he needed a tissue but was asking very rudely in a whiny voice so I asked him to ask nicely. A 40 minute meltdown ensued, all the while screaming "I WANT a tissue!" and the occasional "NOW!" - of course he can't be reasoned with during these episodes (although did pause to wave at a neighbour) so I left him to it (I hate doing this but literally nothing else works but letting it burn out) - I put him in his room because he kept lashing out, he shut the door and continued wailing and shouting on his own until it passed and he came and asked nicely for a tissue

now I understand the sensory side of this - I absolutely hate the feeling of my nose running, I'm starting to realise he 'loses' his words when upset which explains the rudeness...

but on days he's at nursery as far as I can tell he 'masks' his symptoms all morning and loses it when he gets home, he misbehaves the minute we get in grabbing stuff off the worktop (eggs, my phone, stuff I'm using for lunch) climbing on the table, hitting his sister, basically anything that will get him told off so he can break down and let it all out....I understand this...but why on days he's not there is he melting down all day long?! Every time he's told no or something doesn't go his way, every tiny frustration...I'm so tired of the frustrated whining noises and the high pitched wailing. he's better now and it's no better and if I didn't know better I'd just think it was being around me that makes him so horrible

sorry self pitying post but I really want to understand what I can do for him to prevent or help these meltdowns. ..is it a case of planning activities for every waking moment? (I really don't think I can do this) - would a sensory diet help?

I have ordered the out of sync child but have no time to read it

just playing a waiting game at the moment but I'm totally aware that even a diagnosis might not give us the answers we need to get through daily life. . can anyone make things clearer for me?

The word no seems to be a trigger -stop using it. Find other ways of saying it:
Ds - i want a to watch tv
You - ok but first we need to do make a mask with newspaper, read a book etc

If routine is important and he doesnt cope with changes to it then I would write out a visual /picture based routine for the week. Eg Monday morning - craft, monday afternoon - park, Tuesday morning - shopping, tuesday afternoon - swimming etc

Forget about whiny voice, getting on top of the meltdowns is your priority at the moment.

if you know he has sensory issues ie runny nose feeling, then give him the tissue. This could be something that is completely out of his control.

He probably is keeping it in all day because he feels safe with you and at home. He can predict your responses which reassures him.

Sounds similar to my ds. Who, if you listen to preschool, is a model pupil when he's there. However, he walks out that door and it's like he's walked through a portal and he becomes a completely different child.

It has taken me a while but I know now that routine has a huge part to play in it. Ds knows he's going to preschool and does x y and z there. At home we still haven't perfected that. And school holidays are a bloody nightmare.

We now have a visual timetable at home and preschool, with the same style pictures for consistency. Preschool put it together for me.

Definitely don't get into an argument about doing things the right way. There is plenty of time for that to be taught and heading off a meltdown is more important. It's not that you have to give in all the time but very much you have to pick and choose your battles. Equally, there are things you will be told to do which won't work for your child. And that's ok.

We were told to do timeout for ds - 1 minute for each year. Initially it seemed to work. Then I'd spend longer and longer trying to get ds to do timeout then apologise. He simply can't stay still for those 4 minutes. So now we have a 1 minute 'calm down', with a favourite toy. Then a cuddle, a chat and off he goes happily. Until next time anyway. But it's a much quicker process than spending an hour and a half to get him to sit for 4 minutes! (Our HV NN witnessed that one and agreed they were trying to get us to do something which wouldn't work for us).

Hang in there and get your gp/HV team on the case. Our HV team were next to useless until above mentioned incident was witnessed. Gp was much more helpful, let us talk and talk and referred us on to behavioural team

We also have a children's centre support worker, who worries why preschool aren't seeing what she can when she is present there and who describe almost a completely different child. She has been invaluable in signposting us to things such a additional needs support groups. We attend one once a week now and they have given us some great tactics to try. They also understand ds is a complete live wire and make allowances for that within group. Eg he rarely has to wait as he often gets first choice if he has sat nicely or done as asked. But they model the behaviour they expect too.

I can sympathise. There were times with DS (and with DD1) when I felt like walking through a minefield- you never know where the (emotional) mine was going to blow up.

It sounds as if the melt-downs are running you down; which means that you have less ability to problem solve the other bits.

I found it helpful at this stage to realise that

1. him melting down with me was actually a compliment, as he felt safe enough to do it with me...

1. as DS's social development is delayed, it was actually appropriate for him to behave like this, as he figures out that other people have different minds to him, and that they are entitled to say "no" just like he is. Hang in there, it will get better. I now get about one meltdown a year (having had daily and hourly ones are your stage)

1. what headless said...I stopped saying no.

Instead, I would say " I'll have a little think about that", "I'm not saying yes and I'm not saying no, I'm saying that I'll see". "yes, you can do that when you have done xxxx"

1. minisox charts, and charts and charts

Charts of morning routine Sheet for after-school routine Upstairs charts for getting ready for bed routine Use pictures, not words.

1. Really difficult...but when he is mid-tantrum, he cannot hear your words, but he can feel your emotional temeperature. As hard as it is, stay calm and soothing so he feels safe.

Thank you all, it's so wonderful that others understand this. nobody in RL would even believe me let alone believe he wasn't just naughty (a word I only ever use to mean oh you shouldn't have)

headless distractions don't work, never have. Once he sets his mind on something being a certain way he cannot deviate.. even a creche manager mentioned this to me last year when I tried to leave him to do a parenting course (did not go well)

but the having one thing to do each day was how I got through did half term and that seemed to help so perhaps a little more work on my part is needed and I should adopt this for all 'free' time

polter oh God forget manners?! This is so hard for me because I think it's so important and feel really insulted when people are rude including DS but I think if I can maybe side step it with me saying "please may I have..." and giving it anyway I might be able to let it go. I have ordered the sensory tool kit and will check out the explosive child book. yes you're right it is a panic attack...I must remember this if I ever tell GPs what's going on...perhaps this will help them understand him better as right now they rarely if ecer see this behaviour and I don't think they'll get it

minisoks YY that's EXACTLY what it's like, like someone has flicked a switch. honestly I think they think I'm barmy at nursery with my 'concerns' - bar a little difficulty with unstructured times, some impulsiveness with the CD player and refusal to eat, drink or wee some days he's like a different child there. .although he does seem to go mute a lot....anyway so glad I'm not alone in this.

I don't believe in time out and one of the reasons is the one you mention that they just won't sit for it and it becomes a battle of wills blown out of proportion to the 'incident' but I like the idea of calm down time...what do you do? sometimes DS asks me for help during a meltdown and I just reassure him that he needs to do nothing but breathe...but if I try and do deep breaths with him or intervene in another way he tends to go postal! I've tried to involve the HV but as kind as they are they don't get it and seem to think I'm overprotective/PFB. I've sidestepped the GP for a SALT and have got his referral that way.

I have had a support worker from the children's centre out before and she was lovely. I've explained my concerns to her but she says it's way out of their expertise. I am waiting for portage to call me back but may need to chase.

redoubtable yy it is a minefield although lately there's mines under every possible place to tread. yes I am run down emotionally and physically too (pregnant and have been very unwell) which doesn't help.

1. yes you are right I need to remember this
2. yes I understand but do they ever learn social imagination? I'm trying to teach polite responses to things but I figure he's learning by rote more than actually 'getting it'
3. This is tricky because (not unusually I believe) he asks lots and lots of questions and needs to have definite answers to create a clear picture in his mind. I just don't think "we'll see" is going to cut it for him

4.we have a visual routine for getting ready kind of stuff, I took pictures of him doing all the steps and stuck them up but he's not interested in it at all and still freaks out when DH helps instead of me (it's been 3 months of him doing it every day) - what other stuff could I put on it especially if I don't know what we're doing? (or should I always know?) are there any good resources for this online I could print off? when he was younger I used a chart he could move each icon down once he'd completed a task but he grew bored of it so it fizzled out 5.yes I know this but how do I stay calm when he's scratching DD in the face or kicking me? I know I need to be a safe place to come back to but this I think is the hardest thing. I thought I was a calm person before having DC

we've had a great morning though and DS made a joke..I was saying "can you hear my flip flops going 'flip flop, flip flop'?" and he replied "my shoes are going 'sandal sandal, sandal sandal" - he's such a cool little dude at times

Polter has answered most of your questions as I would have...

Re the social imagination- SaLT here said that it's typically maturing around 6 but in children on the spectrum it can take up to mid-teens. I have taken that as gospel, and adjusted my expectations with my DC. I do lots, and lots, and lots and lots of explaining how the other person would feel and calling on a "cognitive empathy" (I just made that one up)...

So if DS hurts someone either by actions, words or body language, we have a long chat about "how do you like it when someone see you get hurt and they turn their back on you? What does that say to you? How do you feel? What do you like to happen?"
At 11, DS is miles and miles better than he was, but nowhere near the natural level of his peers. And it's very learned rather than flowing naturally IYSWIM.

Re the "we'll see"..... I do understand their need for predictability.
I found it really useful to understand it in terms of his anxiety; he has no concept of the future as being safe, so he has to pin it down.
"First, then" is another useful strategy...."first we will go to the park, then we will go home".
And when he does get upset, I found it helped him to calm quicker if I described (reflected?) what he was feeling i.e. "you are really angry that I said no, you are afraid that I wont remember to do it later, you are worried about what will happen when we get there, " etc.
As my DS has sensory processing problems, I rationalised it to myself that the emotional feeling of being angry was distressing to him.

Visual charts - were yours very very simple to start i.e. about 3 steps?

Re hurting sisters, I was very strict with DS. It was the one thing I couldn't take myself. So I went for bribery...we discussed it with him, bought him a toy he really wanted and put it up on top of the kitchen units where he could see it.
First time he had to get 5 days of not hurting his sisters (took him about 9 days to get 5 "ticks", then he got it.
Next time, I extended it to 10 days, then a big toy was 30 days. He got it.

Disjointed post as I am very tired...DS had a birthday party yesterday and had lots of night terrors as a result.

Yes you're so right, I need to let it go it's my issue not his and he can be so polite as well when things are going ok. I've heard that before about the 2/3s of their age...its his speech that throws me out, he's so articulate I expect too much even for the age he is.

I really believe that children do well if they can, I read that article some time back but will hunt it out again. Thank you. so good to hear from others in the same position

Oh yes...should have said re the speech. My DS's expressive language is 2-3 years ahead of his age BUT his receptive (i.e. spoken language that he hears and interprets on the fly) is at his peer age level. In other words, he understands less than he says.

Useful for decoding the "little professor" persona.

And a Play Therapist colleague always says that "when children feel right, they do right".

Good luck. Great advice here.

Yes, it's good for all sorts of situations including adults!

The other one I like is the OT one of "see motor, think sensory" especially for children with sensory issues...this is why I think trying to suppress stims is a bad idea for instance

I may have had wine (sorry OP)

tee hee no worries. you've given me lots to think about. I love that phrase, I hope we get a good OT.

checking out the charts now. We had one that had little icons of cleaning teeth, getting dressed etc...maybe 7 for the morning and the same in the evening, then he just moved it up a space one day when it was done and down the next day. It worked well but he was much younger and less challenging then

Ooh about stims. ..is that what the constant noise is about? DS will sing loudly, repeat phrases and make a bloody annoying siren noise constantly sometimes

Again, polter has pointed you in the right direction.

Particularly this from that blog:-

"stims have a useful function"

"Every behavior has a purpose. Stims are no different"

Constant noise might be his way of blocking other sensations that he finds difficult to process.
Or he might enjoy the physical sensation of breath coming through his throat (DS did this for a while....he hacked every few minutes as if he had a chest infection. Deep pressure helped him cope "better").

The only time I try to modify a stim is if it is socially inappropriate (e.g. picking noses/masturbation) or self-harming (head banging).

I have another one who is selective about manners. TBH I was pleased when he actually did progress from screaming to "TELLY ON!" as it was a vast improvement in communication. At that point, I modelled a more appropriate way of requesting back to him and left it at that.

Now he's 10 and understands a lot more, if he belligerently says "I'm thirsty" then I know that I can reply either "so, what do you want me to do about it?" or "I'm Yve, how do you do." He does, usually respond with "can I have a drink, please?"

he won't say sorry for anything, though. He even beeps it out if he hears it on TV programs.

It's also now possible to ask him to modify his stims when he's indulging in the more revolting sounding or just plain loud ones. He's aware that other people's can be annoying to him and can usually be reasoned into trying something different, so long as I know that his mood is "approachable".

I have so much to learn