Primary School Auties 10: Summer and beyond 2022

[LightTripper]

Thread 10.

Ooops, sorry, filled up the last thread without noticing - here we are at THREAD 10!! (How did that happen?)

This is a thread for the parents & carers of children with additional needs. Most of us have autistic/ADHD children in primary school, but anybody is welcome to join us to chat x

Links to previous threads below.

Thread 1
www.mumsnet.com/Talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed
Thread 2
www.mumsnet.com/Talk/special_needs/3451020-Reception-auties-2018-19-thread-2
Thread 3
www.mumsnet.com/Talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3
Thread 4
www.mumsnet.com/Talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4
Thread 5
www.mumsnet.com/Talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?pg=1
Thread 6
www.mumsnet.com/Talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6?pg=1
Thread 7
www.mumsnet.com/Talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7
Thread 8
www.mumsnet.com/Talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8
Thread 9
www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022

But having autistic traits doesn't mean you are or are not autistic, that is a matter of neural wiring. There's plenty of neurodiversity in my extended family and we all struggle with things like theory of mind abd how to fit in socially. That's not the same as being shy or not always fancying going out, it's different. We struggle with social cues because we struggle to read people because of theiry of mind etc. We have taught ourselves strategies to fit into an NT world that, had we been born NT, would have come naturally.
Saying you're a bit autistic does, in my opinion, patronise and play down the entire NT community.

But Susan, there’s no test for autism so the the only way to diagnose is to examine the number of traits present that tick the box and how much they affect the individual’s life, no? That line is not set in stone and for borderline individuals seems to vary depending on who is doing the assessment.

Also, when I say I see traits in my family I’m not talking about being a bit shy or not wanting to go out (I have been reading about autism for about 6 years, so of course I’m aware it’s more than that). For instance, my grown up niece had anxiety when she was younger and used to self harm. She’s possibly still anxious, I don’t know. My sister always believed (and still does) her brother has ADHD and, now, I’m sure she’s probably right.

I do see traits in my family, and my dh’s as do many who find themselves parent to an autistic child. What I don’t know is how much of the general population would say the same if given the same info to examine. I think that’s an interesting question.

I really don’t mean to upset anyone, I’m just thinking aloud. I’m not necessarily right, I’m just sharing my experience.

I do get where you're coming from @SusanStoHelitsPoker (I think at least - see what you think when you've read this and apologies if I'm still being offensive!) I definitely bristle at the "but everyone is a bit autistic, aren't they?" line (usually with a patronising head tilt). At the same time, I do believe I'm autistic, and my daughter is diagnosed autistic - and yet we both move through the world far more easily and with less danger to our freedom and physical wellbeing than my friend's son who is a non-verbal 12 year old who likes to play in roads. Now, in many ways he seems very happy, loves school, he has lots of great things going for him. But his experience of the world is clearly in many ways more challenging and dangerous than mine.

My DS has no Dx and seems very unlikely to get one, yet he has lots of similarities with my DD and me, compared to his NT peers (not to say he is not NT but also he does have some ND traits, for sure, as does my OH - definitely some sensory issues and some social overwhelm that I recognise).

But I agree it's much more complex than a line with "very autistic" at one and and "a bit autistic" at the other (or maybe "not quite autistic" in my DS's case), and I don't want to suggest that - I like this cartoon's way of putting it:

the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

I suppose what I really want is a way to recognise that some autistic people have a much harder time than others (and also that some NT people are more similar to us and "get it" more than others).

It feels a bit fake to just call myself autistic and play no heed to the fact that I live in a little bubble where my autism doesn't really cause me much problem (and I'm hoping that over time I'm hoping I can help DD build a little bubble that is safe for her in the same way), because I can just not do most of the things I find difficult (crowds, romantic relationships, customer service jobs, noise, being told what to do, not knowing what's happening next, being subject to somebody else's decision making on my behalf) - when there are other autistic people out there who don't have that luxury.

I think it's a tricky one. It just makes me feel like a fraud if I gloss over the differences. Nevertheless, it's a fundamentally common neurology (in my view), for all the differences in the scale of the daily challenges we face. I don't think it's a coincidence that my daughter is ND or that my son has ND traits or that most of my friends are either Dx'd ND or have strong ND traits.

Hi all, have NC for a bit of a freshen up. Sorry if I was too polemical, I really font want to upset anyone either. My brain just feels very black and white about this and I struggle to see the nuance. Probably partly why I think I'm ND! Anyway, sorry again for any offence caused.

UnoQueen I think we’re all trying to figure out what it means for us. I know that I want to be able to understand ds’ perspective, so I appreciate your insight.

Ds has started bedwetting here, out of the blue. He does it very occasionally, but we’ve had 3 incidents in the last few days (one of which was our bed!) which is more unusual. He won’t say whether anything (additional) is worrying him so I hope it passes soon. The extra washing is a pain.

We had a good swimming session yesterday and he is going swimming with school this week too which he should enjoy.

i hope everyone has a good day, beautiful morning here and yesterday was quite warm.

Hi @UnoQueen - I hope I didn't upset you. I find your insights really valuable too and am changing my mind on these things all the time as I learn more, so please don't ever feel you can't tell us what you think!

@openupmyeagereyes is he having any pain? I was just wondering if it could be a UTI.

Yes, beautiful day here too yesterday - I was doing jobs indoors and only realised when I went to pick up the kids! Today is gorgeous too so I am going to try to spend a bit more of it outside. I might buy some winter bedding plants to put in pots as our garden is looking (as always) a bit unloved.

Hmm, I don’t think so Light but good call, I will ask. He sometimes has days where he goes more frequently and I ask him if he’s in pain. He always says no and it passes. I hope this is the same.

Hi. Sorry for the long silence.

thanks for the messages too xx

We are ok, ds is being really naughty at the mo at school, constant complaints everyday draining me again.

Dh still off work, not much to report really.

I’ll go have a catch up now and see what’s been happening.

open did you end up getting ds DLA sorted? Last time I read they had fucked up etc.

Glad you are back Danni, we have missed you!!!!

Ds did a runner out of a fire escape the other day at soft play and legged it over a main road.

I was going round with him and he came down the slide and ran off, couldn’t see him for about 2 mins which I was starting to panic looking for him then I heard an alarm going off and I went straight to where the alarm was going off as I’m not stupid we’re ds is concerned! And the fire escape was wide open, no ds anywhere so dh went one way I went the other and 3 staff also and dh got him across a main road.

Such lack of danger awareness still!

I asked him what the hell he was playing at and he said and I quote ‘I was going to steal an ice tea from subway’

don’t know what goes through this child of mines head sometimes!

Thanks carrie, hows you? X

Right I’m off back to read the last couple of months.

Well I’m all caught up. God you all talk too much 🤣🤣🤣🤣 took me ages to read!

dimples I’m sorry about your nephew, is he ok now? How scary for your sister.

open I’m pleased you got your back payment. And I would of imagined he would of got those rates with his sleep etc, you can apply for carers allowance now. I’m sorry that was in bold I don’t know what I did but I cannot be bothered to type it again 😂 carers isn’t a lot, the payment is actually scandalous at £69.70 a week, but it’s worth claiming and you get your full national insurance credits when claiming it.

susan good luck with your driving lessons, I passed 4 years ago! Good memory open! Can’t believe it’s been 4 years actually, it’s flown by!

carrie I wouldn’t worry about ds still settling in at school, ds is still doing the same nearly 2 years later LOL 🤣🤣

Hi to everyone, and to the new posters too, everyone is welcome, the more the merrier. The more people share stories about their kids the better I feel about my life with ds 😂😂 so thank you!

danni welcome back, I have missed you.

That must have been scary in the soft play. A while ago at one we’ve been going to I saw they had an emergency exit on one side that was completely accessible to the kids. I knew it was only a matter of time until ds noticed it and sure enough he did the last time we were there. Luckily I noticed and was able to reach him before he got out but ffs! I feel your pain.

Ha, same old Danni with us. light, I read your words about your friends son , 12 and non verbal, it really really worries me this will be DS. How do we move forward?? It must be so positive for posters like Ahna whose child can actually repeat words, DS just cannot. I have no knowledge how to get a child to copy when they just blatantly can’t. It’s not like you can do hand over hand with speaking is it!

danni where are you at with meds now? Do you feel anything’s helping? At school or home? X

Argh just typed and lost the message. Will try to redo..

@danni0509 hi, what a terrifying experience at the softplay. Does DC understand if you discuss afterwards not to do it again or is it pointless to even try? I just ask because the ice tea comment makes it sound like language level is good (but I know that may not mean able to reflect on these types of topics)

@carriebradshawwithlessshoes Not sure if you read my comments re DD2 (who indeed does have several words, and for now is developing fairly normally I think , but very much watch this space) as about DD1. It's true that DD1 makes plenty of noises and a few of these are I think "gestalt" chunks (e.g. twinkle twinkle little star, "Peppa George" "don't worry") but if she said them to someone else, they wouldn't ever understand beyond just hearing babbling. I think DH thinks they are a bit in my head to be honest, but I (think) I can spot the intonation because I've heard it so many times (or said dont worry so many times during meltdowns).

Long winded but I guess what I'm trying to say it is very very limited and plenty of nursery staff and others in her care system still describe her as "non verbal". Just don't want to give you the impression things are better than they are especially if it is an unhelpful comparison for you. Often she also seems to make noise as more of a stim than anything else (grunts etc also as part of a moving routine / sequence, honestly such a mystery...) so tbh I just don't know. I totally relate to any feeling of worrying that communication won't happen though - for now we just don't have communication at all and there's not really been progress in a year (possibly a bit more eye contact but that's it). I used to think because she had words pre-regression that was good because we know she can at least make all those sounds but I have since learned that plenty of kids don't ever get language back after regression.

@carriebradshawwithlessshoes does DS make sounds at all? Any luck with trying things like PECS (not for us at all so far)? You mention copying. One thing mentioned in the Hanen course is that asking kids to copy us is often a challenge for them (cant recall the science exactly) and it might be better for us to copy them instead. E.g. their gestures, movements, noises - to keep trying and eventually it sparks their interest, build interaction, and then - hopefully - interaction gets to communication. You've probably tried all this but it just reminded me.

Lovely to see you back @danni0509
Love the comment about the iced tea! Seriously though, what is it about our kids and escaping stuff?? I often think DS will be happier when he's older and he can decide where he goes when (or will just sit on YouTube all day so who knows!!)

Hi @ahna68 yes ds language is really good now, he struggled for years with speech and didn’t really have conversations until he was nearly 6, but actually given he has autism and learning disabilities his speech has really improved! (But his speech is very odd and one sided!) his special school were amazed with his speech when he started when he was 7.

It would be pointless trying to explain as he genuinely doesn’t give a shit. I of course do explain why we don’t do things and what could happen, but he’s generally not fussed if I tell him he could get run over and never see me again if he runs into a road. (Yes brutal I know, but sometimes I am harsh to make him scared not to do it again, but it doesn’t work)

He has adhd too and he’s really impulsive so I think sometimes he just cannot help himself.

@UnoQueen I worry about that most 🤣 ds being older and choosing where he gets to go, I imagine him spending all his disability money in strip clubs or similar! 😂

@carriebradshawwithlessshoes ds is still on atomoxetine and sertraline. He’s on 18mg of atomoxetine a day, I don’t think it’s the sertraline due to go up (he’s on 25mg of that a day) I think it’s the adhd one that needs increasing x

@openupmyeagereyes i missed you too! 💕

I find it very very hard to explain DS on paper. His school comment on his engagement levels and eye contact and how great they are. But to give an example… (easier), let’s say I take a v motivating thing like I don’t know, chocolate. He would come up to me, smile, try and reach for it. Try and stare me out! I would hold it away and say choc or chocolate or whatever (maybe bad example as it’s a long word), DS would jump and squeal and try and wrestle it from me or possibly make a vocalisation like baba, eeee, Alala loudly but none of it would resemble anything like choc/ chocolate. If I then sit down calmly with him and try and get him to repeat a vocalisation he can’t. He tends to use a string of similar sounding vowels so we get a lot of nananana and babababa but not linked to anything in particular. Or we get lots of aaaaasaaash!!! It’s just depressing really. He is VERY loud and constantly making noise but none of it words or approximations. Although he is very aware that he can use his noise to get my attention. We tried pecs and failed too but I’m hoping school may have some success. I have found if I push too hard also he will just give up and walk away. So in my chocolate example if I held out for any approximation of choc/ chocolate/ sweet etc he would just eventually throw in the towel and walk away. The juice isn’t worth the squeeze.

there was/ is a poster on here with a very clever little lad who is now I believe 12 and uses a text to voice facility on a phone and he tells his mum his mouth just doesn’t work. I know people say that repeating isn’t everything but it does show DCs mouth ‘works’. I remember with DD she would repeat looooong before she understood. It was quite a funny game you could play, she could just parrot back to you. She once was playfighting with DH before her 2nd bthday and he said ‘DD you have kicked me in the bollocks!’. DD then spent the next 2 days saying ‘kicked me in the bollocks! Kicked me in the bollocks’. No understanding of course but repeated clearly day in day out. Because her mouth ‘worked’ and that was something to move on from. There are also sounds I have never heard DS say at all. C. S. R. As I say, very depressing.

ahna, how did DD regress? Just suddenly for no reason? That must have been very hard.

@carriebradshawwithlessshoes Yeah that's really frustrating with the chocolate. DD would be the same, although she would probably start crying loudly rather than staring out and then I just end up giving it her... Another Hanen suggestion is to give the motivating item in a clear container (that they cant open alone - e.g. a box if that works, or a zip lock bag or whatever DC needs help with) and then maybe demonstrate with DP so they see how it works and try to get them to give the box / bag to DM, eventually pairing it with a word (open, or chocolate or something). DD not quite ready for this I think, trying to work on interaction via play etc first

Re the regression, when she was about 20 months, I noticed she wasn't saying some words anymore (she only had single words, but a lot of them) and then gradually this happened more and more, and also her interaction with us faded too. When I started looking at M CHAT / reading about autism etc around her 2nd birhtday, by then she was showing most of the "red flags" etc, but when I think back (memory is not always accurate I know) there was really nothing noticable pre 20months. It seemed sudden, I wondered if it was linked to moving abroad / she also had a bad sickness bug / I have various theories about the trigger, but tbh I think the established science is that when kids are going to regress they do just regress. But yeah it was so tough, especially because for the first while nobody believed me - I think mums notice things quicker than others. And then just really hard to feel like we were losing her in a way - it's a weird bittersweet feeling to watch back videos where she was chattering and interacting with us, giving her baby sister kisses etc. I'm just keeping everything crossed I'm not about to have the same with DD2.

Thanks Ahna, he would bring me a clear bag/ tub etc, and hand it over with eye contact and intent. We would then have the same performance as I describe above for the word ‘open’ as opposed to the word ‘chocolate.’ Sometimes he surprises me but when I then get so excited he doesn’t repeat it!

off to school now but just to say quickly re your DD2 I would say at that age we really queried our DD… had she come after DS I would have said at that age absolutely she was on the spectrum, can talk more if you like later, but she actually isn’t. Became more apparent she was nt as she got older. Sometimes things just are what they are and then move on x

Urgh back from parents eve which was crap.

The gist of what they are saying is DS is bouncing off the walls. Totally ‘overstimulated’ by his environment they say. Doing outdoor stuff revs him up more. They see no focus from him, he won’t engage in anything they want to engage him in. So he is really stuck. They aren’t sure why he’s reacting like this, overstimulation? Anxiety? He is NOT though overstimulated when out with us in busy environments which they say they find amazing such as sitting in a restaurant etc etc. they are putting in place an OT plan after half term but said there was a lot of work to do.

just don’t know where to go from here.

Apparently his body is not still the whole time he’s there, even when on the toilet ! They have seen my videos of him working at home and say it’s like watching a different child which is exactly what MS said.

I am just so fed up of this, all the time from school. I had thought this would be better…