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

carrie when he was in the ms school did he also have settled periods or was he always hyper there?

Depending on your answer, then possible he was either quiet initially as it was a new, unfamiliar place and now feels comfortable being himself, or has got over that and just generally not liking being in/pressure of school, OR he’s going through a hyper phase and it will pass.

What do you think is going on? I think he’s off all adhd meds now?

I know how disappointing it is when you think a move to SS will be the answer. Hopefully just a blip for your ds

Thank you so much for this Susan, and as you say it’s a long game isn’t it. I completely get the trigger for DS being pda, I wish I could identify a trigger for mine. It’s almost like I can tell the way he gets out of bed on a morning how he’s going to be and it could be anything (demands or not). So like this morning he jumped up squealing and I thought oh right, it’s going to be one of those days. And it is. If he lethargically plods out I think oh ok, he may be quite calm today. I can’t link it will anything iyswim. I do wonder if at school initially it was foreign territory and he was just a bit unsure and so that reflected in his reticence? I guess Susan if someone said ok so how do you ensure your DS is calm you would say no demands and so within reason create the right environment. But with mine I could not say, it just depends on what mood he is in. He can have weeks of being hyper and then weeks of being calm. I wish I had more insight.

do you find you have success with the cheweley? I can’t see how it would work really for DS as he will put to his mouth what he has in his hand not what you want him to chew. So if he’s playing in sand I could see him putting that in his mouth notwithstanding he has cheweley hanging around his neck. How do you use it exactly?

Open, at mS he had hyper periods and then calm periods. They didn’t want him either way but he has phases of this and then phases of being different. But that shouldn’t be, should it, with no trigger?? That’s not normal?

I’m sure there is a reason, or a trigger, it’s just not clear what that is yet. It could be something physical, it could be chemical. Have you tried keeping a detailed diary to try and spot anything?

What does the paed think?

Open I don’t know what’s going on. I don’t think any child acts in a way for no reason so either the trigger is something external like demands as Susan says or for some internal physical reason. Mumsnet doesn’t like these discussions and I think I mentioned this to you guys ages ago to see if you had thoughts but I didn’t explain myself very well in terms of internal/ physical causes. I’m talking about things like the belief that a child with silly/ hyper behaviour is likely to have high yeast in their gut and that’s the trigger for that behaviour. I was curious about all this years ago and had DS tested and he does. In which case if that’s the trigger, these things flare up from time to time… that’s the trigger, not an external one. In the absence of an external trigger I find it hard to know what else it can be.

Open, the paeds favourite line is to shrug and say ‘it’s neurological.’ So helpful. Or probably say we should start the adhd meds. Which as you say open we have stopped months ago and ironically he has been quite calm. Til now.

I just really hope it’s not some kind of abnormal brain activity linked to seizures. That’s always my worst fear.

So was there a protocol to reduce the yeast that you tried and did it help? Have you tried the GAPS diet?

Is the behaviour you’re seeing consistent with seizures?

I don't know totally @carriebradshawwithlessshoes ,sometimes he's just hyper etc. But the demands definitely build up. I wordlessly swap whatever he's mouthing with a chewelry piece, if I mention it verbally it's seen as a demand so he does the other mouthing more almost to assert himself, but if i wordlessly swap it then its fine. I see it in myself too, I have always hated being told what to do, I feel like demands make me feel humiliated in some way?? It's hard to explain, but I get where DS is coming from.
If reducing yeast works, then why not?? DS has no dietary triggers that i can spot and its hard when people tell me hyperactivity comes from sugar, like it makes makes difference to DS as his hyper state comes from within and how he interacts with the world.
Anyway, off now to devour all these goo eggs i bought from the shops! Hope all your weekends are going OK.

Oh no open when DS has had the (few) seizures he has had they are proper obvious seizures. But I mean I worry it’s a non seizure but still a brain misfiring event.

there are remedies for yeast and we have tried but they have an initial die off reaction which is behaviour a million times worse. We have never been able to stand it, esp when we don’t know for sure that this IS the problem.

not tried GAPS?

Maybe a three pronged approach - detailed diary with everything listed, not just those you think are relevant. Dietary changes/experimentation and throwing money at it by getting a specialist second opinion?

GAPS is one of those things where some people swear by it, others see no effect. The book on it is Gut & Psychology Syndrome but I’m sure you can find lots online.

I’m not so sure what professional opinion i would seek Open… if it’s not a food allergy per se most nhs professionals dont ascribe to things like my yeast theory, they say it’s ‘biomedical’ and don’t agree. Frustrating.

I was thinking from the ADHD/neurological side of things.

Carrie I just get, 'he's very complex isn't he?' all the time. I struggle to identify what sets DS off a lot of the time. I have kept quite detailed diaries in the past to try and pin it down but not totally successfully.

I think the theory that when everything was strange and unfamiliar at his new school he presented as calmer makes sense to me. That is how DS is when he starts something new - normally initially v compliant

By the way DS doesn't draw as such - he just scribbles. He finds it v therapeutic going backwards and forwards with a colouring pencil with big arm movements.

I hate the word ‘complex’ dimples, it’s been used for DS too and I’ve asked people not to use it. DS isn’t complex. I think people use it to justify their own shortcomings in not knowing what to do/ strategies to use with our DC. Or to justify them really not really wanting to try. His language difficulties may not be straightforward but he isn’t complex.

I didn’t say but his teacher did say that DS is constantly all day seeking out adult interaction and she commented on his fantastic engagement and eye contact. She did say that she wonders if at least some of it is him just responding to being completely unable to communicate otherwise effectively.

Thanks for the book recs all! I have been trying to read up on Gestalt language as it is very in line with DD but wow it’s such a minefield, find it so exhausting.. even after an ok sleep last night! (May still be catching up after a horrific Friday night - DD Awake from 1-550, a record even for her I think)

agree with comments re worries about safety, it’s such a concern isn’t it. So much anxiety!

I’ve been a bit in my head this weekend. DD2 (2 this month) has been tip toe walking a lot. I would have said no other autism signs (in particular she’s very interactive) but then thinking about it she’s plateaued on about 15 words for the last few months. I think this is what happened with DD1 pre regression (sounds stupid to say I think as it wasn’t so long ago, but my memory fails a bit). I know I need to not overthink it but gah I don’t know how I’d manage another regression.

hope everyone had good weekends?

I remember that watchfulness around number 2 so much from that age @ahna68 it's so hard not to let it take over. I always worried about DS and nobody ever saw it but really I don't think he's so far away from DD or me in terms of wiring (he's very sensory sensitive around food for example, which neither of us are so much, and his teachers always say he's very quiet/reserved at school at least for the first term of each school year). But definitely has an easier time socially than DD or I did so I think that's the difference between Dx or not - and whenever I raised the question with HVs or nursery staff they always poo-pooed me.

I do suspect that boys with "girl-type" autism are probably still not picked up. Not that I think he is really autistic but just that these things are all subjective in the end. I wouldn't say this in autism circles but I do think you can be a "bit autistic" (in fact I think I am only a "bit autistic" - my assessor said "neurologically autistic" but not in a way that would give me a Dx because I could not show "impairment" as my life is today). And although I get the concern about functioning labels it is clearly true that different people have different difficulties (and levels of difficulty) depending on exactly how their autism manifests (though I completely accept it fluctuates day to day and from one setting to another).

Anyway, sorry - that was a long diversion to say that although I worried about DS very much when he was little and thought in many ways he had MORE autism traits than DD as a baby (but of course with DD I was oblivious and just enjoyed her!), nobody else ever saw it and he seems to be doing fine - so he is either not autistic or so "mildly" autistic that it doesn't hold him back at all or mark him out from the crowd.

So I know it's natural to worry but just know that it can go both ways - worrying doesn't necessarily mean there is something there (or at least, it may not be something that will actually cause a problem, even if she is "neurologically autistic", IYSWIM).

Because we are quite autism positive in our family DS sometimes is a bit sad he isn't autistic which probably seems a bit strange to other people! But I think it's very natural to just want connection with your family and it must be very disconcerting to be told your sister has something you don't - so I always tell him I can see lots of OH and me in him, and we all have similar traits and different traits to family members and some people having a Dx and some not doesn't change that. We are all still family and we are all still connected and the same and different in ways that work for us.

The problem with seeing autism as a spectrum with one end being a bit autistic and the other end being very autistic, though, is that autism isn't really like that is it? And I do think it's damaging to talk about it being like that. It's better to think of it like the wheel where there are core differences. E.g. my DS is very calm and articulate only when he has a great deal of support underpinning that. And some days, it's too much, and he presents differently. And I don't think it's usually the case that you can't be diagnosed if you're not affected too much in your life, that's just something they try to tell you sometimes but you can push back. Diagnosis is important for identity and self esteem as well as accessing support etc. I don't think its helpful to think of 'mild' autism to be honest, if you're autistic then you're autistic and your brain is wired differently.

Thanks @LightTripper that's really interesting to read your experience. I like the positivity note too :)

Also glad that someone relates to this watchfulness feeling, that's exactly the right word. To be honest it kind of took me by surprise as so far I just haven't had these thoughts about DD2. I think it's partly just the timing of approaching 2nd bday etc. But I do also feel like there's something there, we will see.

We have a long weekend coming up, unfortunately involves plane travel which I'm dreading bigtime - but visiting DH's bro and new DC abroad. In any case will hopefully be good quality time with DD1 and DD2 too.

How were your weekends? Is it half term there around now? I'm out of track on the UK dates.

Ahna dd toe walked when she was younger, her speech was also delayed and we did wonder if she might be neurodiverse. Now she's older she doesn't seem like she is and I think a lot of her behaviour was copied from ds, who is two years older.

I get both side of what you are saying light and Susan. Ds is very much impaired and needs a lot of support in order to learn and function. I wouldn't class myself as autistic but I do have quite a lot of sensory issues (if I'm honest with myself) as well as anxiety that helps me to understand ds better. I wouldn't call myself a bit autistic but I would say in some areas I'm closer to neurodiverse than neurotypical. I think in families where there are a lot of neurodiverse people like mine and dh's wider families you will probably find that the crossover is not quite so easily defined in terms of traits. Having said that it's pretty clearly defined in terms of impact. Not sure if that makes sense!

Anyway half term here at the end of the week! I feel like they have only just gone back and it feels like Christmas is looming!

Is it maybe not more accurate to say that a person can have have autistic traits (possibly many autistic traits!) but not be autistic. Arguably most people have some autistic traits. But that is different to meeting a criteria for an autism diagnosis. There was a thread on the ‘are we all a little bit autistic’ phrase a while ago which seemed to annoy a lot of people!! I don’t think we are all a little bit autistic in the same way we can’t all be a little bit dyspraxic or anything else, but I do think it’s probably common for a person to have some autistic traits but not be autistic. Well that’s how I think of it anyway.

I do agree with something that a poster on here used to say… autism isn’t one thing. And I don’t think it is. But just my thoughts.

carrie I believe that. I think it is Uniquely Human which says that all autistic traits are human traits. Maybe magnified to a greater degree in autistic people. I think I have some autistic traits but I don’t think I an autistic, maybe that’s all people mean by ‘a little bit autistic’. We all have different strengths and weaknesses, autistic or not.

Pretty good weekend here though pretty disturbed sleep and ds has been up since 3am today (as have I..). He also refused the flu spray despite me trying to take him in. Not the right day. I’ll try and take him to our surgery again.

Sorry about the sleep open. Ds also refused the nasal spray this year. I'm wondering if the aversion was because of trying (and failing) to do covid tests. He always seemed ok having it before.
We have to try and get the kids to have the polio vaccine today! Not sure either of them will do it!