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 I think there are likely to be many issues with that statistic. Not least that because schools for those with MLD were shut, special schools are full and, for many, MS is the only option. It doesn’t tell you:

• how many children are enrolled but not in school due to emotionally based school avoidance
• how many are waiting for a specialist place to open up
• how many are spending most of the day learning by themselves with a ta
• how many are working significantly behind their year group
• how many are masking at school and exploding at home.

etc. etc.

Last academic year I was told that ds’ school had 400 parents wanting to look around.

I would agree with Open it's more about lack of suitable provision and the just finding the best fit. My DN is very bright and his knowledge of his obsessive interests (Titanic and WW2) is phenomenal. He has also forged 2 very strong friendships at school which has really helped. On his favourite topics he is v articulate. However, his concentration and focus on anything other than his favourite topics is non-existent. He has an EHCP and 1:1 support most of the time to try and keep him on task ...don't envy her job.

dimples I would not be surprised if that’s a fairly common scenario. I am sure there are a good number that get on ok but an equal number that don’t, many that cope in primary but it goes to pot in secondary.

I wonder how many are in my situation and even specialist doesn’t seem to be working out. With 80ish% of autistic adults out of work there’s probably a good percentage of children not in education either

I’d like to think we could home Ed ds if necessary and prepare him for some sort of work. I am inspired by the talk that most of the jobs our kids will be doing haven’t been invented yet.

Oh @dimples76 that sounds horrifically scary hope DN continues to recover well? Poor you and your family for the scare

@carriebradshawwithlessshoes hows the swimming going? DD adores water but has only been in pools on holidays or in the sea here in summer. Don’t see her joining a swim class (no following of instructions) but it’s in the back of my mind as something we should try more. Especially since she will sprint into any water unless stopped (quite a worry in Holland…). Had this at a couple of weddings with ponds / water features, sort of amusing but i worry about more dangerous scenarios

@openupmyeagereyes love that thought re the jobs of the future! Is it a Ted talk?

Thanks Ahna he is slowly recovering. DS is the same with water. He managed swimming lessons with school well but I have been taking him to a small group class (4 kids and teacher in the water) and he just ignores the teacher. We're going to try 1:1 sessions after half term hols.

Open what are school saying about DS at the moment?

Top tip if you're worrying about the future do not copy my viewing choices. I am watching the missing documentary on BBC1 which features 2 young autistic/learning disabled adults

Oh god dimples me too! I only started half way through. I am familiar with Meadowhall and the areas mentioned and am wondering how Luke was so unsupervised to get so far?! Anyway didn’t see the start. The other young man at the end spoke very eloquently though about how seeing things differently isn’t a bad thing. Very true.

Ahna DS loves swimming but would not follow instructions for lessons so it’s just something we do for fun. We holiday a lot in Devon and he will spend ages trying to get on the body board etc etc. and it tires him out of course!

@dimples76 have you seen Pete Wharmby's book on his special interests? It's called "What I Want To Talk About" and one of the chapters is on his special interest in the Titanic!

No Light I will have to read it

Carrie it was the second time he had gone missing in the space of a few weeks. Made me wonder how they could keep him safe. I suppose is it not considered ethical to put a tracker on him as an adult? The other lad was very good at explaining himself wasn't he.

That sounds like something I should avoid. I can’t even watch undatables or anything like that. It hurts my heart.

Ahna it’s not a ted talk, it’s a popular subject in US unschooly podcasts and blogs. It sounds feasible so I choose to believe it! Makes sense with technology and industry changing at the rate it is.

We went swimming yesterday, ds is similar. Mostly likes to play with me but will practice a bit and follow some instruction. He can swim a bit but not enough for if he were to fall in deep water where he couldn’t reach the floor.

How terrifying dimples, I hope he is recovering now.

I used to take ds swimming but now he flat out refuses to go. They did some lessons at school last year and he refused to change or go in the water but the did manage to get him to watch the others. I'm not sure where his aversion came from. He also refuses to have baths without a huge amount of bribery.

that programme sounds scary indeed. Does anyone have anything they've read / watched re autism that they'd recommend?

Want to watch 'this is why I jump' at some point. Also - not a programme - but there's a long youtube seminar from Marge Blanc about gestalt language processing. Want to understand this better as DD's very limited speech is entirely snippets of nursery rhymes / peppa pig etc. Feels like a detective puzzle to figure it all out.

Interesting to hear the swimming experiences, thanks. For now I think I'll just watch her like a hawk near water...

Ahna when ds was younger we couldn't keep him out of water. Didn't matter what temperature/what kind of water it was he would be in there like a shot. Not sure what happened to make him a water dodger now.

Also at your dd's age my ds's language was all bits of TV. Anything he acted out was from TV. I do feel that TV is the main reason he developed language at all and it gave us something he loved to build on together.

The reason I jump is really beautiful.

@ahna68 Raising a happy autistic child is a great book, aa is Pete Wharmbys one mentioned up thread, and Elle McNicol writes beautifully about the autistic mind in her novels. She is ND and is great. Frankies World is good too.

Elle McNicoll is my absolute favourite! Abigail Balfe's book is very good too.

I actually haven't read Pete Wharmby's books either (he's had two out fairly recently) but must get hold of those as he writes really good stuff on Twitter.

I haven’t read either of those two authors, I’ll have to put them on the TBR list which just gets longer & longer…

Ahna Uniquely Human is good as is The reason I jump book and the follow up. I also like reading general parenting books. I’ve just listened to Dr Becky’s Good Inside book and the chapter on deeply feeling kids really resonated, plus I just like the whole mindset of seeing kids as good and looking at the cause of behaviours. I still haven’t finished Beyond Behaviours. I hope I get to a few more actionable ideas rather than theory. Most of the behaviours in it so far are fairly minor really. The book you wish your parents had read by Philippa Perry is good too.

Ds had a good couple of hours today and saw the school OT this morning, hopefully the EP will be seeing him soon. We’ve had a strange week. He’s been more settled, a bit of frustrated shouting at times but no physical aggression, but he’s woken once in the night on quite a few days. Thankfully going back to sleep though.

Dr Becky has quite a lot of good stuff if you just follow her on Instagram. Just little snippets there but it gives you a good sense and I find them helpful! Ross Greene's Raising Human Beings is another good one that is kind of "general parenting" but I think is particularly good for ND kids. I really liked Phillipa Perry's too. Again I think all that stuff is just good parenting but it's particularly important for ND kids.

Yes, I follow Dr Becky on IG and also Dr Siggie who is great too.

Ds woke at 4 this morning, his eye has been bothering him this week again which is unfortunate as I thought we’d sorted that, however he went back to sleep until 6!

Got call from deputy head this afternoon. DS has not had a day at school to put it mildly. We agreed to discuss it further at annual review meeting next week. He really seems to be pushing for a reaction at the moment. Yesterday as we were going through the school gates I told DS to stay with me. He turned around smiled at me, then sprinted towards the road. I ran after him shouting at him to stop (admittedly not v fast as I have a bad ankle and it's a steep hill). At the top he ran into the middle of the road and turned and smiled at me again. One of those days when I wonder how I can keep him safe.

Oh dimples, it’s so scary when their physical safety is at risk. What’s the best way to address it with him?

Ds had another good couple of hours at school. It’s nice to end the week on a high.

That's good Open.

From what the deputy head said it all started to go downhill at lunchtime (which have never been managed well at school). I managed to have a chat with DS this evening and he said that the lunchtime break is too long, he doesn't know what to do with himself and doesn't have anyone to play with. I explained that I am at a meeting at school next week and asked if there is anything that he would like to do at lunchtime and he said drawing. I am very glad that he is becoming increasingly able to articulate what is wrong so hopefully I can advocate for him more effectively.

The road safety issue with DS generally only comes into play going home after school. I'm hoping if he can be better regulated at school that might help ...other than that I don't really have a plan. I guess I could look into getting other people to collect him - he only ever does it with me.

It’s great he’s able to articulate what he finds hard at lunchtime. I wonder if they could run some sort of art club, he can’t be the only one. Failing that does he have TA cover for lunch and can just do some with her.

I would be asking what the school are doing to support friendships and build social skills so that he has friends to play with (if he wants to).

That’s great he can tell you Dimples. More than DS can.

can I ask your thoughts about this school. I’m just confused about it and DS. So he’s been there 5 weeks. Before that just out of control in every way at MS.

on his transition days there they were amazed, he was quiet, calm, focused would sit nicely in class. They said that boded well for this term. First 2 weeks he was very quiet, getting to know it they said. I would tell them about his ‘heightened’ behaviour, the jumping, shouting, squealing, sensory seeking. What we can see at home. They said they didn’t see it at school. I thought that’s fab, this shows it’s the right school environment for him. The right move.

anyway had a chat with them yesterday, parents eve next week. They are now saying in the last week or so they are seeing everything I’m seeing, silly behaviour, jumping so much they are struggling to keep him safe as he’s knocking into everything, shouting, they say in their words that it is exhausting even watching him. Takes him hours to be ‘calm’ . They said this term is for their observations next term is for strategies and hard work so they aren’t overly concerned.

DS isn’t always like this. He goes through months of not being and then months of being like this for no obvious reason. Is this normal?? I’ll be honest and worry he’s having some seizure activity that makes him behave so randomly.

how can it start so well tho and then go downhill? Surely it should be the opposite, he should improve? They say when it comes to learning (language and other) they can’t do anything when he is carrying on like this. He won’t even hold a pen let alone draw dimples! He’s apparently also just mouthing everything in sight.

just very confused and fed up with it all really. I said to them from my observations I see no other children there like this, really I don’t think any of ours are, are they? Other than maybe Dannis?

what is the answer to simply calm them? Or isn’t there one do we honestly think? I know Danni didn’t feel really the meds resolved much did she.

Hi @carriebradshawwithlessshoes this is pretty much what happened with my DS. Out of control at Ms then started really 'well' at new school until 3 weeks in. They didn't see any hyper behaviour, didn't think he has pda etc, then after 3 weeks they were like ohhhhh right yep we get what you're saying! For DS what happens I think is that he starts out well because he wants to succeed etc but the demands, as he perceives them, mount up and accumulate over time until he couldn't manage and would get back to hyper etc. The pattern still is that he transitions a bit by into term, then a few weeks really settled, then less so, so by half term we can all tell he's ready for a break. It's pda. Everything is perceived as a demand and so it builds up and the resulting anxiety is what causes the adrenaline that leads to the hyper and silly behaviours. Even having to be in a certain place at a certain time is a demand in his mind.
Things that have helped: School reducing those demands where they can (e.g. he has his choice from a list of activities every 40 mins or so for 20 mins at a time to help him feel in control), zones of regulation to help him regulate himself more so when that hyper behaviour starts then he knows he is in yellow zone and staff can move him into his prechosen yellow zone activity, which is a slow process but it's working as it helps him regulate without blaming himself so he keeps his self esteem intact, and at home we have very few demands. Rules are the same for everyone and framed in terms of safety. Mouthing is accepted when he needs to as it regulates but I buy chewelry jewellery. He us very intelligent but still has lots of these sensory needs so the two things can go together.
In terms of pda, we and the school have framed it in a way that sees DS trying his best but being unable to conform and comply due to anxiety that just happens to present itself as hyperness, rather than seeing him as cheekily willfully not engaging. I've found school and everyone else are more empathetic within this reframing. The pda society are great too. Aside from the speaking, our boys do sound very similar, and DS was late to speak anyway but i know thats fifferent from your concerns. Big hugs!!

After a year there, he is joining in with the class more than I ever thought he would and he is able to participate in things like cooking safely and calmly. Most of the time...!