Recommendations for support services - 4 year old meltdowns

[TerrificTadpole]

My 4 (very nearly 5) year old DS has been recently been having regular really extreme, long lasting meltdowns. He has had phases of this before, but it is feeling especially intense and hard going at the moment and has been going on a little while. And as he is bigger now it's harder to manage. I am pretty sure it is anxiety related - he gets very worried about changes and transitions, I think the move into year one has triggered the tricky phase we are currently in.

I have read and tried pretty much every piece of parenting advice out there but nothing seems to really fit or work for him. Sometimes I seem to stumble across something that works for a bit, but then it's like he actively starts pushing back against whatever was working.

He is fine at school and they don't see any problems, so struggling to get any support there. I have no idea of he has any ND or not, he doesn't really have any other obvious signs and I think I would struggle to get a referral at the moment. I have decided to try and look at getting some more 1:1 support. We're happy to pay as we have some savings, and free local services have huge waiting lists. But I don't really know where to start, I don't even really know the type of service we require.

Can any one suggest an organisation that offers some kind of consultation/1:1 support for parents who are dealing with this kind of thing? Would either need to be Durham/North Yorkshire/Tees Valley way or online. I have found a few potentials online, but it's impossible to know if they are any good or the right kind of service. Any ideas would be gratefully received, I just want to help him manage his anxiety and hopefully make all our lives easier.

Support services have been stripped back to nothing in most areas unfortunately. You may be able to find a parent support group in your area. I would suggest reducing the demands on him to a minimum and keeping things very calm and consistent at home and see if that helps.

I used to give DD strong bear hugs whilst she was flailing around. It eventually worked. I’d about it being effective on very autistic DC. It helps ground and calm. I also used to them kiss her face all over. I suppose it felt protective after a while

Have you seen Naomi Fisher's webinars? They are advertised on Eventbrite. You could also try contacting her directly to see if she has availability for 1:1 work.

If he’s having prolonged meltdowns at nearly 5 then there’s a good chance he’s ND. In the first instance I’d spend some of the money on an ASD assessment as 1:1 work will be difficult without knowing exactly what type of support you require. You’d get a referral for a private assessment I imagine - school should be supportive and most do now understand the concept of masking so he might appear fine at school and then collapse at home. Good luck OP

I can answer your actual question, sorry.

I just wanted to offer a glimmer of hope. My middle child (only boy) was like living with a lit fuse from 3 to 5. It was hell. Everything set him off and he'd just melt down. As he got bigger I was having to physically restrain him to stop him hurting his sister. We tried everything too (somewhere on here is me asking for tips on a calm down space etc).

He was also completely fine at nursery, they couldn't believe it when I discussed his tantrums with them.

His meltdowns were are related to anxiety / transition.

From 5 onwards he calmed down so much. He still has the odd meltdown but takes himself away for it, is never physical and it generally only happens when he's especially hungry or tired (definitely seeing them pick up towards end of term). But honestly, he is the kindest, funniest, sweetest boy now. He has big emotions (in good ways and trickier ones) but that's part of what makes him so amazing the rest of the time.

I say this as someone who would have happily given him away to anyone who would have taken him 2 years ago!

You have all my sympathy and I'm sorry I don't have more solid advice, but I very much hope it is just another phase for you too.

How are school managing his behaviour? Is there a clear structure that he responds to? ( seen you say they don’t have problems)Are they reducing the length of time he needs to sit and listen? Chunking learning into achievable amounts
(clear expectations) followed by a reward or motivator or time outside.
Have you spoken to the SENCO in school? They need to know what is happening at home.
If you can afford assessments I’d start with SALT and a Specialist Sensory Integration OT assessment.
Look at the book The Out of Synch Child Has Fun. Play activities for Sensory Integration needs.
Can you identify any triggers at home? Look at STAR analysis Setting Trigger Action Result to help to unpick behaviour.

Yes I realise we would have to go privately which I'm happy to do, but just don't know where to go to start looking for a good service.

Yes you're possibly right, I suppose I am just concerned that without school having any concerns and as there aren't a another issues we might not get very far at this point. Especially as we do go months without any issues, it just seems to be during changes so previously when he started reception, now with the transition to year 1. Maybe you're right though, will speak to school again.

Thank you that really is very reassuring. We do have periods where there are no issues and he is such a sweety and so affectionate and funny.

So on a day to day basis he isn’t having meltdowns but just occasionally during times of change etc he struggles a bit? That sounds quite normal. Sorry I thought you meant you were having daily struggles. He’s still only young so you could just try doing some work with him yourself, there’s workbooks about worries etc for kids that might help?

There isn't really any behaviour at school that needs managing - it just doesn't arise. At home he blows up over such random issues. Today we were about to go out and I asked him if he wanted a tactical wee and he couldn't decide if he did or not and got in such a state not wanting to wee, but not wanting to go out without weeing. We ended up with an hour of screaming, not really able to leave the house. It just doesn't happen at school.

They haven't made any changes for him at school because as far as they can see he is coping. I am not really sure what the main triggers are so it's hard to know if I should be requesting them. But I will go back to school.

Thank you for the advice, I will look through it all properly.

Well as in we'll go sixth months say with very few issues, but in the last 6 weeks it has been happening maybe twice a week. Seem to have bad spells maybe every 6 months lasting around two months. I really don't know what's normal but his loss of control does seem extreme and long lasting

@TerrificTadpole Just from the one example you have given it looks like he struggles with making a choice. In school either they all either go at break or before lunch etc. Lots of decisions are made for him at school and there’s clear structure and routine. Things just aren’t like that at home of course.
Try to take away choice making or reduce to 2 if you can. This can be tough with toileting but if you have the luxury of more than one toilet for eg you’d say do you want to wee in the downstairs toilet or the bathroom upstairs.
An alternative would be to try anFirst and Then so a laminated strip with Velcro and it would be toilet then park for e.g.
( symbols with words)
Try reducing your language and don’t try to negotiate once he’s having a meltdown.
You could try a Worry Monster at home too.

Yes definitely it usually related to some kind of decision, or occasionally if something doesn't quite go as expected for some reason. I have tried to make life as structured and predictable as possible which does help. So for example, there kept being issues when we walked to his grandparents house as there are two ways we can go and he could never decide which way to go and this caused a few issues. So now we have a routine, we always walk there one way and back the other - he knows this and it has so far removed the issue.

With the toilet issue with hindsight it definitely could have been avoided - I wasn't even that fussed if he had a tactical wee or not, he never really has accidents so I probably didn't even need to suggest it. But ever since we watched the Bluey episode I always offer him and his sister a tactical wee almost like a bit of a family joke and it's never been an issue before so it caught me off guard. I think he was also quite tired not sleeping well in the heat which made everything more tricky.

@TerrificTadpole Have you seen the You Choose books? Just a way to make choices in a more relaxing way.
Don’t be too hard on yourself it does sound like you are unpicking triggers. If he’s having a tough time and as he’s so young you could try to keep things predictable. The route is a really good solution.
Later on it’s good to use “ planned sabotage” when you have time to deal with the fall out and to build resilience and plan for the future.
I would strongly suspect he is using some of his own strategies at school which have gone unnoticed to the untrained eye.

Getting upset a couple of times a week isn’t unusual at this age but you mention the triggers in your later post about choices etc and that does sound unusual and makes me think ND. You also said he has “meltdowns” but what do these look like exactly?

No I haven't seen any of those - I'll have a look. And thank you for the support. Yes definitely where we can keep life really predictable and avoid so many decisions he does seem to cope much better, it's like he has lots of uncertainty about year 1 and what it will be like so has less ability to cope with uncertainty in other areas of his life. But obviously with life sometimes it is impossible as parents to plan everything to that degree. And sometimes we haven't even explicitly given him a decision to make, he's just perceived a decision because we've given him a decision in a similar situation in the past, when he was a bit less volatile.

I first began to suspect my son might be autistic when he was 4.5 so very close in age to your son. His autism isn't obvious and he appears to be fine in school because he masks.

Your son may or may not be autistic, but I would suggest trying some of the strategies to see if they help - if he's not autistic, it won't hurt.

Look up "demand avoidance" and the PDA society website, they have some really helpful information and advice about a demand avoidant profile of autism and parenting strategies. You can also look up 'low demand parenting' and I second the recommendation of Naomi Fisher.

You do need to talk to the school as well; request a meeting with his teacher. Even though the problems are at home and not at school, they still have a responsibility for his emotional well being and they may be able to suggest options for support. For example, there could be a pastoral TA who could spend a bit of time with him each week, they could refer to other services, etc. We got a referral to the mental health support team who did an assessment and gave us some advice sessions. Also, there should be an EIFA (Education Inclusion Family Advisor) linked to the school, so find out who that is and contact them. They can usually give some advice and support.

Lastly, if you are going to spend money on anything at this stage, I would suggest an Occupational Therapy assessment. It might be that he has some sensory issues you haven't noticed. If he does eventually have an autism assessment, the OT assessment will be helpful.

He sounds very similar to my son who is 6.

My advice is (if you don’t want to go private) get yourself on a right to choose assessment pathway for autism / ADHD. We’re on NHS but looking like it’ll be 3-4 years (we’re already 18 months in)

I’ve found AI really helps with specific meltdown strategies. I put in what’s caused it and it gives me a suggested script - I found I was struggling to stay calm and supportive (especially 30 minutes in). So for example he had a huge meltdown because we burnt a cake. Nothing helped until AI suggested coming up with a name for the disaster and drawing it out as a comic strip.

In terms of support services it’s very difficult - we’ve found it impossible to find anything appropriate as he’s pretty ‘neurotypical’ in the presence of other people. The GP recently did refer us to our local ‘social prescriber’ who can apparently work with children on this, but of course, after going in circles this service actually wasn’t available at our practice. You could ask your GP if they offer this - I think it’s a fairly new thing.

Are you willing to share your area - if Bradford / West Yorkshire way I can give some more specific places which we’ve found helpful generally for out an about activities.

Thank you for all the responses - I don't appreciate it as it's really hard to understand what is/isn't normal and how best to help him.

So the meltdowns usually start with him being really quiet and just stopping - in the situation where it's him making some kind of choice it's almost like he's stuck in the decision. In a situation where there's no pressure if I back off and give him some space and time at this point he can sometimes (not always) get himself out of it. But inevitably we have to get to school or something else is happening so it's hard to always do this. Usually when we try and gently get him out of the situation, with the example above trying to encourage him to have a wee or just get out of the house and wait til we get there it escalates into him shouting/screaming a repeated phrase. So when we then started just trying to get him out the house he was just screaming, "But I need a wee, I don't want to wee in my pants. I'm not going to do what you want ever again until I can have a wee" over and over, but still wouldn't actually wee. It just kind of escalates with the screaming and often rolling around on the floor. Often he will run away and then shout for us to be with him, but if we do try and sit with him he'll then run away again. He's isn't usually violent unless we have to restrain him at all, so for example last weekend he had one just about when we were about to head home from somewhere. We really couldn't get him to calm down and we felt like we really needed to get him home to let him de-escalate so in the end we managed to get him in his car seat but I had to sit in the back to stop him undoing the belt, I had my hand over the button and he was pounding my hand. Sometimes he shouts things at us I guess with the intention to be nasty, but not often usually it's more just screaming a repeated phrase about the situation. It can go on anywhere from twenty minutes (on a good day) to over an hour, I would say average about 40 minutes. And then usually it ends as suddenly as it starts.

This does sound like my daughter who is autistic. She does the thing where she shouts at you to go away and then when you do leave she shouts WHY IS NOBODY WITH ME and then if I go back she either tells me to leave again or runs away. It’s like they don’t know what they want or need, it’s just reflective of them being totally overwhelmed. At the point of the overwhelm it’s hard to get them out of it as they can’t behave logically, sometimes a cuddle can help her snap out of it but often it has to run its course.
After your update I would definitely pursue a private ASD assessment OP. Good luck

And often after it ends he seems in a great mood for a day or two, like he's got all that tension out of his system and feels loads better.

Thank you, that's really helpful. I spoke to the school when he started in reception and was having similar issues and they said all was fine and to see how he went. Things really settled down after the first half term so I left it at that. All was fine at the last parents evening, but then he was pretty settled at home at that point. But you are right I do need to go back in as I think the transition to year 1 is going to be tricky.

Thank you, we're sort of the more north part of North Yorkshire so probably not very close to Bradford and WY services. I will have to try the AI thing, although normally once we're at that point nothing gets through to him until it's run it's course. I wouldn't be adverse to a private autism assessment, I guess it's just knowing where to spend the money (we are fortunate to have some savings but obviously not a limitless pot!) as I was worried about pursuing a diagnosis and getting told he doesn't have it, but being no further forward supporting him with the anxiety which seems like the biggest problem for him right now. I just want to put our focus wherever makes his life easiest.

Yes absolutely to not knowing what he wants or needs, and sometimes he actively seems to push away strategies that help him like he almost needs to have the meltdown. We went through a phase where if early on I could give him a cushion and told him to get all his frustration out on it - hitting it, punching it etc it really helped. But then it was almost like he realised it helped so started just yelling, "I'm not frustrated, I don't need the cushion."

Do you know if we pursued a private diagnosis whether the services that provide the diagnosis also provide support alongside? I guess I'm just worried about putting all our effort/time into pursuing a diagnosis but not being further forward for helping him to deal with the anxiety which I'm pretty sure triggers this, as this feels like the thing that is having the negative impact on him currently.