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.

To be honest, and I’m sorry this isn’t what you want to hear, I’m finding there are NO support services. My DD was diagnosed age 3.5 so her difficulties were evident earlier on maybe but we were already in the system as she had some issues with gross motor milestones and I’m a psychologist so I knew how the system worked to get a referral and diagnosis quickly. She sounds very similar to your son, highly anxious, struggles with decisions, can be very resistant to perceived demands at times. But because she is bright and manages ok in mainstream education she doesn’t have an EHCP and gets zero support. If I push I get one meeting a term with the SENCO but they don’t have the resource to do a huge amount for her other than allow her to have stuff like fidget toys and stress balls etc in class if she needs them. We have to try to manage her anxiety ourselves, we haven’t yet got to the point of paying for professional help as both me and my husband are psychologists (although neither of us specialise in this stuff, he works mainly in neuro rehab and I work in HE teaching) but we might at some point. There’s a lot of good resources available though and I guess the purpose of the diagnosis would then be for you to know what you’re working with (so to speak) so that you can then research and take appropriate steps. Eg. If he’s highly anxious but not autistic then you might choose to do something different to if he is actually autistic. But it’s all trial and error anyway really, what works for one autistic child doesn’t always work for another - or it works for a while and then randomly stops and you have no idea why!
DM me if you want to, happy to chat x

Yes, sometimes we’re beyond the point of no return with meltdowns.
A lot of your updates ring true with us. We can get stuck in decision loops where he gets stuck, repeating the same phrase. Like he wants to go out but doesn’t know if he wants to go, we say fine, let’s not go but then he’s crying because he wants to go.
Sometimes we find we need to pop the meltdown and almost encourage it as we’ve been skirting round it for ages, once it happens things can calm down, though he does sometimes end up overly compliant which makes me sad, like he’s trying to make up for it. He can also become very babyish - I think that’s part of the fawn response from fight or flight.

We also have where we have to restrain him in his car seat.

You have my every sympathy.

I was going to suggest the AWARE charity as they’ve been great for us but I imagine too far from northern north yorkshire. You could google 'local offer autism' and see whether there's anything similar near you.

OP, I strongly advise you not to pay for a private autism assessment, but instead ask your GP to refer to Evolve Psychology via Right to Choose. It's a private provider that accepts NHS funding. See https://evolvepsychology.com/nhs-right-to-choose
There are several providers but this one has a good reputation and is relatively close to you.

Get the assessment on the NHS and save your money for support and interventions once you've identified the needs. However, I do think a private OT assessment could be worth it, as I mentioned (it's much cheaper than a full autism assessment).

Thank you, you've been so helpful. I think I had it in my head that when we had struggles last time round I was searching various forums and found someone recommending a lady who I think lived in Wales but offered online support as well. I seem to remember she had been a psychologist for CAHMs but had set up a private practice supporting parents with children with various similar challenges. Things improved though and I never contacted her. I can't for the life of me find the post again, can't find that particular lady via online searches but was hoping something similar might be available but I don't even really know what Google terms to use. But from what you have said maybe she is more of a one off and what I am looking for just doesn't exist! Thanks again and I might well DM you at some point - it's nice to not feel like the only one when my friends with similar age children seem to be in a nice easy phase at the moment!

Thank you yes I have heard of Evolve locally, although I had heard they weren't currently accepting referrals but I can look into it. I think saving our money for support/interventions is also what I had been thinking but I was struggling to even know what that sort of support/interventions would we would need. Like would it be a psychologist? Or a parenting coach (sounds a bit wishy-washy!)? But the OT is a good idea - I don't get the impression he has sensory issues especially usually but he has recently really struggled with any little tiny injury - a wet plaster on a tiny cut which he simultaneously wanted both on and off was another meltdown trigger a few weeks ago.

It's the end of the school year, they're all really tired, hence meltdowns are worse.

That said, speaking to a child psychotherapist might give you some coping strategies, if you can find a local one.

Yes definitely, sometimes I find myself almost trying to trigger the meltdown as it's inevitable and I just want to get through it and out the other side!

Daisy Chain is quite local to us, but I understand they have massive waiting lists and as it is an autism service and I really have no idea at this point if he does have autism I didn't really know if it would be appropriate.

Although the more I read experiences on here the more I feel like he probably does have autism, or at least characteristics of autism. His meltdowns sound so like some of the ones you are all describing. My friends will say oh yes my son still has meltdowns, but when they describe it it's a relatively short lived tantrum to being told no. But he's actually pretty good at being told no on the whole (unless we're in meltdown down territory anyway).

Would a child psychotherapist want to speak to us or him? I feel like we need someone to give us strategies rather than work with him at the moment really with him being so little still.