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

My little guy did so well in school all week but is feeling the effects this weekend. He's very spacey and has a few new behaviours I'm hoping it will settle in a few weeks.

Hey everyone! How was everyone’s weekend / start to the week? Welcome to the new joiners (to be honest I am still a new joiner myself :) )

sorry for the silent few days. We’ve had a pretty awful week! Can’t tie it to anything in particular / she doesn’t seem ill , but near
constant tears. Bedtimes worse than ever with her settling around 11/12 (and only after various experiments w screentime etc) and waking in the night , up for the day 5. I feel like it’s such a snowball effect because the bad sleep makes her days worse etc etc. My DM is supposed to be visiting this weekend (she lives quite far so it’s not super often) and to be honest I want to suggest postponing - feel like we aren’t in a good place to have anyone in our ‘bubble’, it’s just so hard and we are close to breaking point it feels like. Hopefully it will turn into a better week.

aside from DD I’m absolutely hating the change of seasons! I’m the same every year and with DCs the rain just makes everything soooo much harder. Any indoor play / activity tips? Feel like we are on 90% screentime atm, makes me feel so guilty.

Hiya, welcome to all new people!
We are OK aside from having taxi dramas so I took DS in this morning walking, went OK but only just made it to work. Ladies I have made a life decision: I am learning how to drive!! Hooray but also eek!
Hope everyone is ok

Oooh, well done Susan. It will give you more freedom. danni only passed her test a few years ago I seem to remember.

ahna sorry dd is dysregulated. Regarding inside play, I’d try lots of sensory activities to try and find some she likes. I’m sure googling ‘autumn sensory play’ would get you some good ideas. The imagination tree website is good.

I called DWP back today and amazingly the person I spoke to managed to track down my application. It’s now being dealt with by a difficult department. Hopefully we’ll hear a decision soon.

Different department, not difficult. It’s a specialist tracing team or something.

Ha, I just received the ‘thanks for your application letter’. Seems to be just the standard one but at least says they received it on 16/6. Hopefully we won’t have to wait another 3 months. I’m so glad I sent it guaranteed delivery. Apart from anything else there’s so much sensitive information in it for it to go missing.

Has anyone read Beyond Behaviours? I’m reading it at the moment.

Any good Open?

Go for it Susan! You Londoners will laugh at me but I never quite understand how people don’t drive (whether they like it or not)… from our house I cannot get to the supermarket, schools, Drs, parents, friends, park, well anywhere without getting in the car. I can walk to the local shop but it’s 30 mins walk so could carry back, ooo, a newspaper?? Our nearest train station is 10 miles away. So if I didn’t drive I’d have to taxi, or wait for DH, or sit in all day! How do people do it?? Maybe it’s location. There is a bus which would take me to one local town but that’s not remotely where I need to go.

susan I passed on my 4th attempt so don’t give up!

carrie too early to say how useful it will be. The early theory sounds good but I haven’t yet got into the what-to-do bit. It uses the polyvagal theory and I’m sure it will
dovetail with the co-regulation handbook too. I read the first few chapters and then skipped ahead to the autism/neurodivergence chapter then I’ll go back and read the rest.

I find it quite emotional reading some of these books because when a child is NT it’s usually parental actions that causes the sorts of anxieties and dysregulated behaviour that we see with our ND kids and I always find myself wondering how much of it is my fault because some of it surely must be, to a certain extent.

I’ll let you know what I think when I’ve read more of it.

Carrie I can beat you - it took me 5 attempts to pass the driving test. Good luck Susan

Open good to get confirmation that your application is in the system. Hope that you get a decision soon.

Well done to your DS Danni and I'm glad you know what class he is in now!

In what way would a parental action cause that behaviour Open, even in a NT child? That’s interesting. I am not sure that can be right in ND children at least else how would you explain a situation where there are the same biological parents bringing up a ND and NT child in the same way but they present differently? The cause of that has to be the neurodiversity rather than the parents actions because both children are treated the same?

I do think that it’s often hard to know where an anxious/ quirky/ obsessional or whatever personality ends and ‘neurodiversity’ starts. I’ve always struggled with that. I’ve known lots of people who are very anxious/ eccentric etc but I would not say they are ND. But no, I don’t think it’s your or any of our faults. I do wonder, very often, if DS is as he is because of something that was my fault pre birth (DH has his theory on this, given we have no ND in the family and DD is obviously NT.) But I’m not sure how behaviour of parents could cause behaviours in an already ND child. Maybe I need the book. Tho it sounds a bit taxing for me 🤣🤣🤣. I’m better with the jilly cooper.

so there you go Susan, there’s hope for you yet 🤣. 5 tests for dimples and she still successfully negotiated that route to her hol cottage without knackering the car! I do think no of tests does not correlate to how good a driver you are. Let us know how you go on!!!!

I don't know - I think it's really hard to ever pin down any one "cause". I mean, in the end our personalities and our neurotypes are so intertwined - aren't they just different aspects of the same thing i.e. who we are? It's like looking at a CT scan of a brain from different angles, or with different resolution - they are all pictures of the same thing although they may look very different.

I'm also not convinced that we can usefully ascribe much "fault" except in severe cases. Most parents and I think all the parents here are really demonstrably trying hard to take care of their children and give them the best most secure start in life that they can. Even if your child is NT you will make some judgement calls that turn out to be wrong, and you might look back and think "I wish I'd parented differently in that scenario, then DC would have learned/had an example of/thought about xxxx". But because the world is built for NT people you can get away with a lot and "good enough is good enough". Even if they never reach their full potential (and who does, realistically?) and even if you could have parented differently to get them closer, they still have lots of choices and options.

For our ND children I think it's harder because the world is demonstrably NOT built for them, and so it feels like if we make one of those innocent parenting errors a lot more might be riding on it. But it feels like with ND children the spaces in the world in which they can function and have a happy life are already quite narrow, because of the way the world is built - so we worry more because we know that even a simple mistake, that wouldn't matter for an NT child could close off one of those niches that would otherwise have suited our ND child.

At least, that's what keeps me up at night! I don't know if it makes any sense to anybody else. But I still wouldn't consider myself really "to blame" if I make those mistakes because I am still doing my best, and will continue to, and that's all I can do... And I think everybody here is doing their best too - I've never seen anyone here talking their kid down or patronising them or being all "woe is me why are they like that" - we all believe in our children and want the best for them, and think really hard about the decisions we make for them. I don't really see what else we can do.

I’m not saying that I’ve caused the autism or his being ND (aside from it potentially being genetically inherited). I’m saying that for some of my ds’ more extreme behaviours, there’s probably a whole host of decisions and actions/inactions that have contributed to where we are now. As much as I try to be gentle and positive as a parent, at times I am impatient and irritable and what sort of role model is that for him? I just wish I had known then what I know now as there are things I would have done differently, things that are harder to undo now.

Neurodiversity aside, I think it’s quite possible for the same parents to raise different types of children. If you have quite an authoritarian approach it may suit one child’s temperament quite well but not another, who might end up anxious and insecure if they weren’t parented according to their more sensitive personality type.

@openupmyeagereyes I do often ask myself if we 'caused' it. I definitely think there is a genetic basis with DD (can spot it on DH's side, at least at DGparent level, perhaps very slightly DH himself) but I do worry we made it worse. In particular I think moving country and language , daycare systems, etc, may have contributed to the way in which it happened (regression). But at the same time I look back on a bad sickness bug she had just pre-regression and wonder if that played a part. What I do know, though, is that asking these questions is a bad hole for me to go down, do others share that view?

After a horrendous week, we had a window of angelic DD yesterday early eve - huge smiles, loads of cuddles, generally just very sweet. But then the obligatory 8-10 meltdown that we cant seem to kick. Thinking to cut her afternoon nap - we keep allowing it just because I feel she needs to get some sleep somehwere (and when we have tried cutting it, it seems to correlate with her waking in the middle of the night). But maybe if we cut it consistently it would help her to settle in the eve. There's also a ton of sensory stuff going on for sure, and we are trying to be better at satisfying the sensory 'diet' but it is just a lot of trial and error at the mo!

At the moment she's hating sleeping bags, which is not very helpful with the dropping temperatures. She isn't great at using a duvet / weighted blanket either. Thinking to layer her up with a vest under the PJs. That also hopefully stops her doing hands in nappy (she seems to do this out of habit / a sensory thing maybe. Not a great habit, though..)

It's an interesting thought process but I fo think we have to be careful of apportioning too much blame, we are all only human too, and trying to parent in the best way we can to children who completely defy traditional parenting techniques! My worst time was when I allowed myself to be led by so called parenting experts when DS was a toddler and his neurodiversity was only just beginning to show. I kept trying all these techniques to get him to listen to me but nothing worked. What I know now is that he needed a radically different style of parenting due to asd and demand avoidance, so much so that everything has to be presented as him having a part in the outcome of things, and if there are rules then we all have to follow them. I wasted so much time trying to parent him more traditionally when I should have just trusted my gut more. Once I took off those demands and parented more cooperatively, he was so much happier in himself, until mainstream teachers tried to use those same traditional techniques! Now at his new school, everything is non hierarchical and he has choices etc. But I don't think there's a book on how to parent my DS, he is very particular and unique! I wouldn't have him any other way but it's taken me a while to work him out. And I still get it wrong, of course. Last time at 9.10pm, he wanted one more book, so I read a bit but apparently I read it too fast so DS got miffed then I got miffed as I was still reading at that time, so I've learned to just walk away for five mins, then I came back and we had a hug and read the blummin book anyway! DS said ' I bet if you'd just read it slowly from the start, I be asleep right now' and he was probably right! So I think we're always learning but we are only human too. I think autism is genetic for us, I can see traits now in myself and my dad, also DH a bit. And although it might make life a bit more challenging, its also great that we are letting our kids be themselves and feel proud of who they are.

Yes I agree with all of this. I think what I struggle with particularly and my patience then just goes isn’t so much behaviours, as testing as they can be. In the grand scheme of things and reading a lot of your stories we do not have any spectacular ‘behaviours’ other than at MS when he used to flit around and wouldn’t sit down and so on. What takes me to the absolute depths of despair is how and why I have a 7 year old who this morning I asked to get his shoes and he brought me my handbag and who just still cannot speak. Yet can do, non verbally, quite complex numbers, is extremely sociable, ‘connected’ to us, great engagement and so on. It’s like he just doesn’t ‘get’ language… and I have no idea what to do about that.

so I of course screech ‘I said SHOES!! SHOES!! Not HANDBAG!!’ At him this morning. And he looks all sad and probably thinks well I’ll bring you nothing next time. Your book wouldn’t like me Open.

I mean where do I go with this? It’s so depressing. I am by no means underestimating behaviours but I often feel I could cope with some bloody bad ones if he could just tell me for 2 minutes what he had been doing at school.

even if I could identify in our family any ND traits this is above and beyond.

and yes Ahna it’s a huge awful black hole and if there was an answer potentially in there I’d jump in! Or even not an answer as to why but an answer what to do. But there isn’t is there.

I do spend a lot of sleepless nights thinking about DHs theory on ‘why’ and one of my own which is probably ludicrous but it doesn’t get you anywhere.

I often think when I read these posts that yes, ND should be embraced, accepted, whole heartedly and yes, in some circumstances I would say I’m happy with that. But it absolutely terrifies me that he still brings me a bag when I ask for shoes at his age.

Ahna, are you overseas with work? Family? Do you think you will stay there? My own nosy ness, nothing to do with thinking it has affected your DD at all 🤣

We moved during lockdown - husband's home country and we had outgrown out London flat. DD1 was 18 months and DD2 a couple of months old, we had totally outgrown our tiny London flat and also were ready for a change from London. When we moved we had absolutely no idea about DD1 being ND, although I'm not sure it would have changed things at the time. Hard to say.

I now work here too (Amsterdam - no need for it to be secret!) and we have a nice home outside Amsterdam with more space than we would have had in London. It started out as a 3-5 year plan but increasingly I think that we may end up staying. It will depend a lot on DD1. I know people say that bilingualism has no effect on language but I still have a bit of an expectation that if she does become verbal, it will likely be in Dutch given that she's 5 days daycare and will be school here. And it's not the easiest language to move internationally with! If in a few years she is picking up English well too, that might change things.

For now, I'm happy enough here. Think it's a fairly good place to be from an autism perspective (except that they are extremely anti prescription - getting even an appointment to talk about melatonin has been hard). I struggle a bit with lots of the appointments being in Dutch but it has accelerated by learning I guess. We get a bit of help from DH family although not a lot. Quite used to being a bit of an independent bubble by now.

Ah ok, well I’m impressed with your language acquisition!! I did an online speech course a little while ago and the SALT was very adamant that bilingualism didn’t cause or contribute to speech issues.

it sounds lovely and an opportunity to definitely take.

I have a good friend with 3 LOs, she lives in Geneva with her Spanish husband. She is English, the LOs chat on fluently in a mix of languages. I think if it is what they are introduced to (leaving aside any other language issues generally) it’s a natural progression.

I didn’t mean to provoke any bad feeling in anyone, I’m just naval gazing - perhaps not the best place to do so, sorry.

ahna I love Amsterdam. I’ve been there 5 or 6 times as I dated someone for a while who moved there for work. I don’t envy you trying to learn Dutch though!

We have had an appointment through for a video assessment with CAMHS. Bloody ridiculous. It’s quite soon, a week Monday, so I’m already worrying about how I’m going to talk to ds about it.

We had our forest school again, though mostly ds does his own thing. He had a good morning at school so so far, so good. The SALT is starting with him next week and OT too I think. All a step in the right direction.

Oh you haven’t Open, it’s an interesting discussion. And as always interesting to hear what others have to say. Good luck with the appointment!!!!!

Nothing to apologise for @openupmyeagereyes. I often wonder about the impact of covid and school closures and DS getting scared of crowds etc. He struggled with mainstream before then but it all got significantly worse after. I wonder too if I should have kept him at his preschool that turned into a primary school instead of moving him to our catchment one. I did what I thought was best at the time and I suspect he would still have found mainstream incompatible in the long term. Makes you think though.