Support with new SN assessments

[CH2020]

Hello. There’s probably a lot of threads like this, but I’m just looking for some support from other mums.
I have a 3 year old DS. I love the bones of him, but I am finding him very difficult lately.
For the last year I’d say, his behaviour has become increasingly hard to
manage. Whilst I try to block out views of everyone else, it is hard. Both my parents think he shows signs of ADHD. If I’m honest, I don’t do labels per se, but I think he hits somewhere on that spectrum - then again he’s only 3 so may well change as he gets older.

The pre school have suggested support from SENCO, which was a big turning point as I’d never really told them about my concerns - I assumed he was just behaving a certain way for me and not others because I’m mum! We now have a meeting with them for January to see what they suggest for educational setting.

The nursery nurse with the HV team has reviewed him and he’s done a social emotional questionnaire around 8/9 months ago and apparently he scored very highly for referral to paeds. We’ve never known why as the results haven’t been interpreted to us, but we asked for him to be reviewed at home/preschool first before a referral. This was before the school raised a concern and so the visit is now being done soon as I followed it up after the school mentioned his behaviour.

My DH does not believe there is a problem and thinks he is just being an active typical “boy” (I hate that term but I know what he means). He thinks he’s just testing boundaries and being a 3 year old! Which of course he still is!

I feel like my brain HURTS. I try not to think about it but I’m constantly now analysing his behaviour and wondering if it’s something to be concerned about.

One thing he does do a lot, and it’s becoming more frequent, is gag on smells and textures. He always has done even as a small tot! But now he’s gagging at his own poo, keeps saying his younger brother has done a poo and gagging (even when he hasn’t) and earlier gagged on his flask of water saying it was “yucky” (he has that flask and water every day). It’s very triggering for me as I have a phobia of sickness, but I try not to rise to it. I don’t think it’s attention as sometimes he does it when he doesn’t even know I’m behind him or in the room! It’s like an automatic reaction to him. And he’s now refusing meals he used to eat by the day.

We wondered if a lack of quality sleep was causing his behaviour to be poor so we’ve started monitoring his sleep with an owlet sock and - nope - perfect 12 hour sleep every night. Good quality.

I just feel so lost. I want to support him but I’m just in this in limbo of knowing if it’s a power play or whether he is on the spectrum and can’t help it.

His communication isn’t great but he does talk. A lot! But he can’t hold a conversation if that makes sense? He rarely answers us when we talk to him and we’ve been asked quite a bit by family if he has a hearing problem which he doesn’t, but he will recite a number of nursery rhymes. And very very loudly 😅 he shouts a lot, and loves to sing.

I guess I am looking for support from people who have been stuck in this limbo with their child at such a young age. I just feel a bit lonely. Like I’m trying to figure all this out on my own and trying to explore all avenues.

thank you for reading.
x

Pre-school raising concerns suggests it is more than DS being 3. If the preschool and the HV have raised concerns, it would be a good idea to pursue further assessment. A referral to SALT and OT would be a good idea (although sensory OT isn’t commissioned on the NHS in many areas).

It is good the preschool is putting support in place. If they need further advice, they can ask the Area SENCO for advice. They can also apply for high needs top up funding if they need it.

A diagnosis isn’t a label.

I have a 3 year old under assessment and it can feel really daunting, and the processes and systems hard to follow. And it does feel really lonely at times - like all the other parents get to avoid all the meetings and the appointments and the worry that you have to deal with.

Was it the ASQ-SE questionnaire that you did? If so, there won't really be any results to interpret. It's not a diagnostic questionnaire - it's intended to flag where a child may be struggling with social/emotional development in ways that would benefit from further assessment by a paediatrician or other professional.

I agree that you should ask for a referral to speech and language if you think he's struggling to hold a brief conversation. Nursery might be able to refer directly themselves. It sounds like they are offering support which is very positive.

I'm not an expert and I don't know your child, but I think there is enough in what you've written to merit ASD being investigated. The diagnostic process can be very long so there is no harm in getting him on waiting lists now; if behaviour and communication improve and sensory issues diminish, you can always remove him from the list later.

If you want to help your son, you need to try to change your mindset that a diagnosis is a label. A label is things like 'naughty' 'difficult' 'disobedient'. And in reality, that's what happens to your child if people expect them to be able to do things that they simply cant. They shouldn't be punished for it.

I know it is hard, realising that your child may have challenges ahead that you had not anticipated but try to reframe your ideas about being neurodiverse. The world is set up to benefit NT people. That doesn't mean that ND children are less important.