Meltdowns

[sunbeam2]

Hi, I wonder if I can get some advice from your experiences please?

My 5yo DS has recently been referred by the GP to Paediatrics to get some assessments on whether he has any additional needs. ASD, ADHD and Sensory Processing have all been mentioned as things I could read into to see if they sound familiar.

I’ve done some reading and I feel like none of them fully fit but I can probably see parts of them all. DS’s biggest challenge is the “meltdowns” he has when something isn’t going his way and he can’t cope with those feelings…

His meltdowns are normally triggered by something small not going the way he wanted… very often it’s food related (e.g. we didn’t have the right food, opened a packet the wrong way, put his food on the wrong plate) but it can also be about other things like not being the person who got to do a certain task, who got to go down the stairs first etc.

As he’s got older it’s got a bit easier to distract him to try and avoid the meltdown but once he’s in one there’s no reasoning with him. He stops talking at all (he’s normally fully verbal) and it’s like he can’t hear us. He may point at something or in a direction over and over again but we often don’t know what he’s trying to show us and even if we say the right thing he might not nod to confirm so we will get stuck in a cycle of him getting increasingly frustrated. This can go on for up to an hour of him sobbing, shouting and sometimes lashing out until eventually he wears himself out.

I know that we’re likely to be waiting a year or more to get an appointment at the hospital so in the meantime I’m hoping to try and get some idea of what might be going on so I can at least attempt to handle it in the right way! Does any of this sound familiar to anybody?

Sometimes in the middle of a major meltdown I can’t help but think ASD… at other times I wonder if it’s more anxiety and the lack of control he struggles with…

Any thoughts would be much appreciated!

What you describe could be ASD.

Some people find Ross Greene’s book The Explosive Child, Yvonne Newbold’s resources, The Out of Sync child book &/or PDA strategies helpful.

What support is the school providing? Do they offer any emotional literacy support, anything like Zones of Regulation? Anything like sensory circuits? Meltdowns at home aren’t always because of what is going on at home. They can often be a sign of unmet needs at school. Have a look at the coke bottle effect. If school was easier home life would likely improve too.

We had these concerns and behaviours with our son who is now 7. We’re still waiting for a formal ASD diagnosis through CAMHS. What did help us was commissioning a private OT assessment to check for sensory processing difficulties. This was done in school and outlined his difficulties (he has severe SPD). It was helpful because whilst waiting for other assessments and reports to be done, it gave us something definite to go on and something to give to school which recommendations. It’s helped hugely at home too.

@BlueBrick @Whysomanyfoxes - thank you both so much for your replies, I really appreciate you sharing your experiences and thoughts.

As you've both mentioned, it feels really important to be doing something and trying to help DS rather than just sitting and waiting.

My friend recommended the Explosive Child book too so I've actually just bought that earlier this week... I need to start reading it, hopefully it helps. I hadn't heard of PDA but from a quick google can see there's lots of information online so I'll definitely look at that too. @Whysomanyfoxes, you mentioned about getting a private OT assessment... Can I ask whether your school were able to put you in touch with the OT or whether it was something you had to organise?

DS only started primary school at the beginning of September so at the moment there's nothing in place with them in terms of specific support, although I've got a meeting with his teacher next week so am hoping we can start discussing it then. I've never even heard of Zones of Regulation or Sensory Circuits!

He has transitioned remarkably well to primary school thankfully... last year when he moved nurseries it was awful (he literally wouldn't speak to anybody in the nursery for a month, I had to send in videos to prove he spoke!) so I was bracing myself for the worst but the things we put in place to support him (arranged an individual visit to the school in July to meet his teacher and see the classroom, watched videos of the classroom tour online, drove past the school every morning on the way to nursery etc.) seem to have helped. Not to mention having a friend from nursery in his class!

It's super helpful to read about the coke bottle effect as people keep asking me if he's okay at school like that's a measure of whether there's an issue... but even before reading about the coke bottle effect I kept feeling like it's different because it's a different environment... different frustrations, different levels of choice, more regimented routines etc. I also suspect it doesn't help him at all unfortunately that his Dad and I are separated (since he was 1) so he does also have 2 separate homes that he stays at, so something else for him to contend with. I think that's part of the reason why I sometimes wonder if it's anxiety or life upset rather than a diagnosable condition causing the problem... but either way I know I need to do something to help him.

@sunbeam2 we had to organise the OT assessment ourselves. We searched online for paediatric OT SPD assessments. School were accommodating in allowing the time and space for this to happen. The OT also spoke with teachers.

Thanks @Whysomanyfoxes - That’s really helpful. I’ll do some research online to look into getting an OT assessment

Request a meeting with the SENCO. The school should be providing SEN support. When you speak to the school follow up verbal conversations with emails so you have a paper trail as evidence should you require it at a later date.

If you think an EHCNA is required, an OT assessment can be part of that if the LA agree to assess. If you search MN there are lots of threads where OT recommendations are given.

Thanks @BlueBrick - they’re really helpful tips. When I see his teacher this week I’ll ask to meet with the SENCO too. As far as I’m aware even the nursery never got SEN support because after the first month he settled in and seemed happy there. I’m glad I’m starting to learn more now so hopefully I can advocate for him a bit better

IPSEA and SOSSEN have lots of helpful information on their websites and have advice lines. They are good places to start learning about the SEN system in England.