Thread 13: autism and any other additional needs A/W ‘23

[openupmyeagereyes]

Thread 13.

For parents / carers of disabled children, autism, adhd, and all other related neurological conditions. Most of us have children in primary school. But everybody welcome!

Chatting about anything and everything related to SN!

Links to previous threads.

Thread 12
https://www.mumsnet.com/talk/special_needs/4816294-thread-12-autism-and-any-other-additional-needs?page=1

Thread 11
https://www.mumsnet.com/talk/special_needs/4711291-primary-school-auties-11-2023-is-here 

Thread 10
https://www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

Thread 9
https://www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022

Thread 8
https://www.mumsnet.com/talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8

Thread 7
https://www.mumsnet.com/talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7

Thread 6
https://www.mumsnet.com/talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6

Thread 5
https://www.mumsnet.com/talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?page=36&reply=104240251

Thread 4
https://www.mumsnet.com/talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4

Thread 3
https://www.mumsnet.com/talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3

Thread 2
https://www.mumsnet.com/talk/special_needs/3451020-Reception-auties-2018-19-thread-2

Thread 1
https://www.mumsnet.com/talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed

Hi everyone, how is everyone? We've had an OK week, not a lot to report. Starting to notice the lighter evenings which can't come quick enough!

Sleep OK ish this week, only a couple of bad nights.

Bad rain forecast for the weekend, thinking of visiting an aquarium. I think both DDs would enjoy that in very different ways. We shall see!

Hello, I mentioned a few weeks ago that we were being referred for an autism assessment. I've got the lengthy forms and met with the school SENCO who was very supportive.
He masks well at school so they say they can only do the forms honestly which is fine. But might this mean the referral is rejected?
Also are there any tips for filling out our forms, he was a fairly typical baby which I think might also mean it's rejected. But now the need for control and meltdowns if something isn't as expected are extreme and affecting our home life.
I just want to maximise the chances of the referral being accepted.

Eurgh, spoke too soon on the week going well - just got the equivalent of a break up text from DD's SALT. Basically saying shes going to stop with DD and focus on kids where she feels she can make more progress - ouch... I read the message whilst on a work call and it didn't hit me well. Also because we struggled loads to even get a slot with this SALT and waiting lists are so long, there's not so many people here who take on non-speaking / "pre-verbal", it's going to be tough to replace. But I guess she hasn't helped much and we maybe make more progress ourselves at home.

@SpinningTops not in the UK so not familiar with these specific forms. You'd hope that the process recognised masking which is of course common rather than rejecting on that basis. I certainly wouldn't think lying (eg on baby behaviours) makes sense. But others here will have more experience on the forms I think

Ahna what a crappy thing to say. Why not just say that she doesn’t think there’s much benefit to dd at the moment. I know carrie has had this attitude from SALTs too, it must be very frustrating. I think you’ve already got Hanen books? Are there other at home programmes?

Re. the aquarium, some of us had a discussion on here about how quickly dc moved through these places when they were younger, so be prepared for that. I hope you all enjoy it though.

SpinningTops I’m no expert but I it’s definitely possible to get a diagnosis when children mask. I think with autism it’s usual for some symptoms to be evident by age two but with ADHD it can be later and there’s a fair overlap with symptoms. I would just be honest because otherwise you’ll tie yourself up in knots - not suggesting you wouldn’t though.

We’ve had a good couple of weeks. Ds is doing better at school which has been great to hear.

@openupmyeagereyes that's great school is going well - long may it continue! Yes, we have Hanen and even extra hand outs from a parents court we did on it. I think it's a good moment to re-read and really be more rigorous about applying it at home even if that means designating specific times to really focus / the other one occupying DD2 for a bit.

Yes fair point re the aquarium, may be that she has absolutely no interest - it's so hard to predict isn't it!! An experiment either way (and by this point in the winter, I'm so sick of soft play!!)

Don't worry, I have no intention of lying on the forms. I have done them as honestly as I can but then I've seen things say fill it out like it's the worst day. I just really hope the real difficulties which seem to be in the restrictive repetitive section are noted.
On filling out the form I realise I have very few recollections of how he was as a baby but I guess that means there was nothing really noteworthy.
The SENCO did mention it could be ADHD instead of autism which we found surprising.

Ahna we’ve the experience of racing through and not really looking as well as being stuck in one place for a long time! Now he’s older it’s a bit more relaxed.

Anybody else finding Mondays challenging re. school? Is there anything you do to make it easier?

@openupmyeagereyes mornings are ok but Monday eve / night are generally the worst of the week and I’m sure that’s no coincidence. Absolutely no tips though I’m afraid … how’s it manifesting in DS? That he doesn’t want to go / has a bad day/ difficult after?

Ahna his behaviour is just tricky when we get there. He’s fine once he’s home and he goes in ok. Obviously it’s just the transition from the weekend but I don’t know how to make it better for him. I don’t know if I can.

No advice Open. Mondays are always tricky here, although yesterday it was DD's turn. I hate leaving her at school when she's crying.

Dare I write that DS is on good form at the moment...He has been a lot calmer the last couple of weeks with far fewer violent outbursts. Although he was dysregulated after OT again on Thursday. The home programme that the OT has given us is working well - but we have been there before and once the novelty wears off DS refuses to participate. Hopefully, that might not happen this time.

Yesterday evening DD and I were drawing hearts which she was cutting out. She wrote DS's name on one and gave it to him. He told her that she was a wonderful sister. Need to remember moments like that when we're in choppier waters.

Ahna are you having fun with the spinners?

Fed up with DS, just don’t know what to think. Appreciate views although I know you aren’t medics (to my knowledge)!

Great Xmas, calm waters, first week back was good. Then like everyone he picked up a bit of a cold and for some unknown reason just goes completely off the rails. I don’t know if he ‘feels’ illness more than other kids or if it’s just that he can’t communicate? Anyway he then changed mood to just howling/ sobbing for hours at school (and to a degree at home), whacking the side of his head and then his whole head on the table (never done this before) and pulling his ears.

School put up with it so long then ring me to collect him (tricky when I’m at work.) The fact that I thought it was their job to try and give him a communication tool to tell us what’s wrong seems to allude them.

Trip to GP, they say he’s fine.

I then stress he’s having some kind of fit/ seizure (he’s now off all meds, is this a seizure sign?? DH v cross and says of course not, I’m obsessed with seizures, there’s some truth in that I do admit.)

I ask the private neurologist if she thinks it’s seizure related and she says no, she thinks it’s behavioural. Nevertheless he’s never behaved like this before.

Back to school, back to the calls about it. Major stress.

I don’t really believe in hell in the afterlife but I do believe in hell in the here and now and it looks like this with a NV child. Is this just how life will go in for him/ us? Surely there has to be some road through, can people (poor DS as well as us) be expected to just cope with this?? What can change and how? Am I being unreasonable to feel very bitter with school that we are STILL here (no communication methods taught to him to deal with circs like this?)

And it goes without saying that nothing productive is coming out of school when he’s like this!

Sounds hard carrie. No experience of epilepsy or NV children so I can’t offer any advice. Ds has never self harmed but I know others’ ds’ on the thread have.

You have your own methods of communicating with ds, does he offer any insight through that?

He said his ears hurt. That was as much as I could get. That may have been right but he has no infection and it all just seems very disproportionate…

Maybe a noise bothering him rather than physical pain? How bad was his cold? Maybe his hearing has been affected.

Not bad all all Open. But then it takes virtually nothing to throw him off kilter..

DH at that time had covid but DS tested neg for that.

Just brainstorming: You could get his hearing tested. Could be some sort of pressure issue (like when you have a cold/or on a plane). Could be a new appliance making a noise he doesn’t like - I think kids can hear in more frequencies than adults. It could be tinnitus? So many possibilities and hard to identify when he’s non-speaking.

Obviously some autistic people self harm out of stress or communication issues too.

Thank you. It seems to be more they say at the end of the day at school, just weird really. Everything is hard when he’s not talking. I hoped but didn’t expect school to get him talking but I did expect them to get him communicating… am I a cracked record?! 🙄.

@Ahna65 i meant to say too sorry about the SALT. DH always says it human nature to prioritise service provisions where you can see an achievable in the short term end goal/ outcome. IMO SALTs are useful where kids have a degree of language, whether it be unclear, disordered, spoken with a lisp or other pronunciation issue but for the child who cannot imitate sounds or words and is NV is useless (well the ones we have used are.) I recall one saying to me like I was expecting the earth ‘I cannot get inside his mouth and make him make this sound.’ What I would say tho is you know DD better than any of them and it’s through (again in my opinion) that bonding/ joining/ connecting that we talked about with the spinners that will build joint engagement and a foundation for then (as hard as it is) extracting some approximations or sounds that relate to a specific thing, whether that is something she wants or an activity or whatever. No one with DS can do that as well as I can, certainly not a SALT. I often wish you and your lovely DD were around and I’d love to have a go with her and a spinner 🤣. We could brainstorm together!

Perhaps he’s just stressed out by the end of the school day then, and this is how it’s manifesting for now. It doesn’t mean it will always be this way.

I thought at one point they were having some success with visuals and him choosing a snack and suchlike. What happened with that?

Ds had a good morning today after yesterday’s Monday-itis.

Hi all, sorry to have not posted much, we're all getting over the flu and then DS fell at school and hurt his ankle so hes now also at home.
Sounds so hard @carriebradshawwithlessshoes I too would have expected school to help him develop some type of communication method. It must be something causing him to behave like that but working out what it is is the hard part.
@openupmyeagereyes I don't know really, transitioning is really hard isn't it. Is there anything his school do on Monday mornings that he likes that you can tell him about?

Carrie I agree with Open's suggestion about it being pressure perhaps causing ear pain. When I was a student I made a GP appointment because of a bad ear ache and the GP shouted at me for wasting their time as it was 'just pressure'. I am not sure how I was meant to know the cause of my earache as an 18 year old with a history of a lot of ear infections. Any way, I am digressing- it was v painful though. Perhaps it's worth giving painkillers and chewy or sucky sweets? Your poor DS (and you not knowing how you can help him)

Has your DS had a hearing test? My DS had glue ear and ended up having 2 sets of grommets

I don’t know Open they seem to be all over the place. Say he’s doing x y z (hurrah) then say he’s not. Also start something off like the EP but then lose track on any follow up, I chased and the Head said she would ‘give me a call’, then didn’t, then was off unwell, then didn’t call on her return and I’m too busy to keep chasing (nor do I feel I should have to.) not sure if this is what all schools are like but this is how this one is! All over the shop.