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

That's why I don't think masking does you any good long term @NameChange30 .I did it as a child and it's taken me a long time to work through who I really am as a person. I just wanted to please everyone all the time.

I'm sorry that's been your experience. I don't know what the answer is - if school doesn't see it, they won't make adjustments, so he'll continue to mask... I know what's happening but feel stuck. His mental health is my single biggest worry. Couldn't really care less about the rest. (Well obviously don't want him to physically hurt himself or others... but I mean behaving well, achieving highly, etc - only to the extent that it will affect his self esteem if he feels that he's "failing".)

Uno and your ds NameChange30

So hard when school don’t see - or don’t want to see - any problems.

We’ve had a good day, I took ds swimming this afternoon.

I don't know the answer either really. I think allowing DC to be their authentic self at home, so stimming etc, is a good start. I've learnt lots about how to manage socially as I grew up too so I don't think it's all terrible :)

I’ve been following along the thread but not felt able to contribute much recently, just wanted to delurk to offer solidarity @NameChange30, my 4yo DD sounds very similar. Brilliant at masking in school, but completely crumbles at home, and suffers severe anxieties. The SENCO and teacher are well aware of what masking is but have openly said they don’t know how to support her because she doesn’t show those anxieties to them and doesn’t appear to be struggling with her learning.

It must be awful to hear him say he hates himself.

It cut the rest of my message off! Is he able to articulate any more than that I.e. what he’s struggling with? Guessing not as that would be nice and simple! We get a lot of school refusal but she cannot explain why she doesn’t like it and doesn’t want to go.

I've been lurking since I stumbled across this thread a few days ago. My DD used to be like yours @NameChange30, masking really well in school but the wheels seem to have come off in Year 2. In a way it's good because school are finally noticing and doing something, but so depressing to hear she's spent most the day in isolation because they can't handle her behaviour.

The masking problem is really tough. Schools seem too willing to think that if the fall-out of the problem isn't manifesting at school, then the problem can't be at school. But

@ahna68 you mentioned your DH being on a bit of a different track. There are a couple of YouTube videos talking about couples having different approaches - might be useful? OH and I definitely have different priorities and concerns (e.g. he worries a lot about DD not having any special friends at school - but as long as she is happy and getting on with the other kids OK e.g. in class then I'm happy too - I just remember what a nightmare "best friends" can be at that age and think in many ways she's better off out of it!) I think more generally he worries more than me about DD doing "normal" things - but in some ways that's good as I think that extra "push" has been good in some ways (e.g. she can now ride a bike and recently swim, which I don't think would have happened if I'd been parenting alone). But I think a lot of Dads go too far with that push to "normal" and it's natural that it's often the Mum who sees what the child actually needs day to day and ends up having to try to steer towards things that are more adapted towards the child rather than just assuming that the child can always fit into the "normal" system and way of doing things.

(please ignore the click-baity title on this one - it's talking about them splitting up earlier in their son's life and then getting back together - although I think they have separated now that's not what this video is about and they still co-parent on good terms - the video's mainly about them coming to understand autism and what their son needed at a different pace).

That is tricky Namechange. My sister's eldest (ASD, dyslexic, dyspraxia) was just v quiet at school, never exhibited any anxiety to them, never showed any challenging behaviours. My sister filmed him crying hysterically, thrashing around on the floor and saying that he wanted to die rather than go to school - showing them that video helped. It also helped at the EHCP Tribunal where the LA's Ed Psych gave evidence that DN was thriving at school - it certainly highlighted that the EP's 15 min observation of DN in a PE lesson was inadequate to gauge how well DN was coping.

We were at our adoption psychotherapy today. In those sessions DS can be non compliant but generally hasn't exhibited any extreme emotions/meltdowns etc. I felt that we had a lovely session today but as we were leaving DS struggled to open the door and then started screaming and hitting me. To be honest it was quite a relief for the therapist to witness it first hand. She emailed me afterwards to check I was okay- after reassuring her I reminded her that this is behaviour is an every day occurrence for us.

Loads more on here with more experience Jules but the wheels fell off similarly for us too. My biggest regret is not challenging the isolation, especially given the reaction from the new school to how issues had been dealt with previously.
You will know what is feasible. I would just say if you think you'll regret not kicking up a fuss then just do it - not the time to worry about what people think.

DS is the opposite, which confuses me and mostly school. Very hyper and disruptive at school - it's managed OK, but he needs a full time 121, and he struggles to write anything. Much much calmer and easier to manage at home (by which I mean anywhere that isn't school). It's probably helpful? Certainly means he gets a lot of support. But hard to know how to help him.

Thanks all for the solidarity

Cathster
Sorry you are also struggling to get your DD's school to recognise her difficulties. So hard isn't it, and a weird feeling to almost hope they will fall apart in school so that the teacher gets it
Like your DD, my DS can't really articulate exactly what it is, although we gently ask him, and he does sometimes try... I'm hoping that might improve with time/age. And yes, it is awful to hear him say that he hates himself Sadly we have almost got used to it, in that it doesn't surprise us any more because he's been saying it so regularly for so long (he also says he's stupid a lot, which is not true because he's extremely bright, but I think it's because he feels stupid sometimes). However, it doesn't hurt any less and the longer it goes on, the more of a worry, because we can't just put it down to a phase.
The SENDCo has referred DS to a external organisation that comes into school to do child therapy sessions so we'll see if that helps at all, it will be interesting to see if he feels safe enough with the therapist to open up, if they can shed any extra light on what's going on and help in any way it will be a bonus. Glad school can offer that at least, it's better than nothing.

Jules912
Really sorry to hear that your DD is struggling so much, and that the school are putting her isolation, that's sad. What kind of behaviours are they? Have you had meetings with the SENDCo and is there some kind of plan?

LightTripper
Thank you for sharing those videos, v interesting stuff and I agree with your take on the general trend with mums' v dads' approaches. It's certainly true for us.

dimples
Thanks, I might have to resort to filming him
during a meltdown, but I think I might struggle since I'm always so focused on trying to manage it - and he generally hates being photographed and filmed so there's a risk he'd kick off even more... I'll see what DH thinks and whether he has any ideas about how to do it subtly.
About your DS's therapy session, bit weird to say this as it's not exactly good when behaviour like that happens, but I'm glad the therapist saw it and hopefully has more insight into your challenges now. Also I wonder if it's a sign that he's "relaxing" more about the sessions in that he is not holding back?! Please do correct me if I'm wrong, I'm just wondering "out loud" really.

SusiePevensie
Am I right in thinking that it's less common for children to be ok at home and not at school? Although actually on reflection if there are fewer demands at home, there'd be less to trigger challenging behaviour, whereas school is more stressful for so many reasons.. so it makes sense too. How old is your DS?

She tends to lash out or throw things during the meltdowns. I've not challenged the isolation yet as the alternative is suspension and she actually seems to quite like them ( she normally ends up with the ELSA or SENCO and they do a lot of talking about feelings). They are getting a bit better at stopping her getting to that stage but sometimes there aren't any adults to take her out as her class doesn't even have a full time TA.

@SusiePevensie yes that’s us too. Explained away by all as overstimulation at school/ uncomfortableness about being away from me/ feeling reassured in his home surrounds with family but exposed and unsure and therefore hyper etc in school. As you say I can say yes but he’s fine in a busy shopping centre/ restaurant etc and they say ah but yes thats because you are there. He has his anchor. We did an experiment last year where I went into school and he instantly calmed down and sat and worked with me in their hall… so it’s hard to say there’s no merit in what they say even if it’s not the full story.

I think it is more typical for children to behave better at school IF they understand social norms, understand authority, are upset/ embarrassed about being told off/ want to fit in and so on. But certainly for DS he has no sense of any of those things and I’m not sure they are things you can teach, they are either there or they aren’t .

Yes that makes sense.
i suppose that's where the no-longer-used labels of "high functioning" and "low functioning" come from - people who understand what is required to "fit in" and are able (and willing) to mask in order to do so, versus people who don't/can't. I'm simplifying of course.

Be careful with those terms please, they no longer exist for a reason!! My DS finds school hard because of his demand avoidance and he is generally more regulated. He understands social norms and hierarchies but rejects them, that's often autistic people I'm afraid, I'm quite similar! But that doesn't mean he's low functioning. He's very intelligent...but only with a huge amount of support...he can barely write but he can do timetables beyond 14 in his head...so those terms are really not very helpful. Many autistic people have spiky profiles and need support to function despite 'appearing fine' until it all gets too much. Masking is all part of that too. Sorry I don't mean to upset anyone, but I decided this year that I have to speak my true feelings on things ad part of my personal journey to reconnect with my authentic self (sorry I know it sounds very cringey but it's how I'm trying to.undo the effects of masking for a long time).
Re isolation and not being taken out to calm. Down, this was our exact experience of ms, which I believe ended up giving DS and I trauma through anxiety.

More regulated at home I mean

Jules I would also worry about the isolation. What kind of support plan is she on? Does she have an EHCP?

Uno it's not cringey, it's good that you feel able to set boundaries on here. I think people still use the terms as a short hand to give others an indication of the level of need of their child. I also dislike them as it's not descriptive in a useful way. Like you say with spikey profiles ds excels in somethings and struggle without a lot of support in others.

Ds has been pretty anxious over the last week or so. I'm not sure what it is really. Maybe the change in light/weather or the run up to Christmas, which is always a bit challenging. I think maybe, also, we're all just a bit tired and grumpy at the moment. I do find the darker weather quite difficult.

That's why I put the terms in speech marks, I know they're not accurate at all. I was trying to point out that as far as others are concerned they might think that an autistic person is "functioning" if they are masking but of course we know that they are still struggling and the masking comes at a cost. Whereas "low functioning" might mean not fitting in but actually being very bright in many areas. Anyway I don't know if I'm explaining myself any better now so I will stop there! I certainly don't want to offend anyone.

I'm not offended @NameChange30 and I know you used the speech marks but I am just explaining the problem with those terms in case of other people reading the thread, and my promise to myself to call things out. I didn't mean to offend you either 🙂
Thanks @livpotter , I also struggle with the darkness. I'm trying to embrace it more this year and let my body rest but it still gets me down. Roll on the darkness receding in about a month's time!!

They're looking at getting her an EHCP but she seemed to be managing (well masking) at school until this year so it's caught them off guard a bit. Don't know why, school think it's a combination of Covid and expectations ramping up in year 2 (they did more play based than usual in year 1 as they missed so much of reception). She's got ear defenders, a wobble cushion, a calming box and her own space. She also has a card so she can leave if she needs to but needs someone to take her. She does seem to monopolise the year group TA (yes they only have one TA across 3 classes) but she only works mornings.

8@Jules912 you can do your own ehcp application. Schools are often reluctant because then the provisions have to be provided by law. Ipsea are very helpful.

High functioning really just meant normal IQ - so >80, and that doesn’t really indicate much in terms of how well they actually function in daily life since lots of non-verbal, high support needs people are, intellectually, incredibly smart.

School is not a safe or comfortable space for lots of our kids and some cope by masking, some get visibly dysregulated. My own ds is fairly similar at home and school which has been helpful in terms of diagnosis and support at school.

My ds’ coping mechanism has always been to take himself away from uncomfortable situations.