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Primary school auties step into Christmas and the New Year - thread 8

999 replies

openupmyeagereyes · 09/12/2021 13:45

New thread.

This is the continuation of the thread for parents / carers of autistic children / children with additional needs. Most of us are parents of children in year 1 / year 2.

Links to old threads

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

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6
openupmyeagereyes · 04/01/2022 12:10

carrie children definitely do change, so there's absolutely hope. It still may not look like a traditional NT Christmas though and that may be where you have to make your peace. I mean, it may - you never know - but it might not either. There's a guy on Instagram called Stories about autism that has two autistic sons, I think the youngest also has ADHD (my examples are about autistic kids because that's what ds has, but I think many of the behaviours cross over). His youngest didn't get Christmas or presents for years but has shown more interest over the last couple of years and loves opening presents now. They are both non-verbal. danni's ds has done the same over the last few years.

When you say your ds is not inquisitive, do you mean at all? Is he interested in how things work for instance or looking at things when you're out and about? If you look at it more broadly, what do you see? I think cognition expresses itself in different ways and I think there are many people who are very intelligent but who think in a non-typical way; who are very literal for instance, very focussed on something in particular like maths.

Attention bucket's aims are twofold I think, on a simplistic level. Firstly, using 'exciting' activities (it's all relative for each kid though isn't it) to get and sustain their attention for short periods and secondly, the teacher is the only one that is allowed to do the activity which is supposed to teach following an adult led activity. I could see how, over time, this approach would help in other areas, Christmas included but nothing is a quick fix with our kids.

The fact that your ds was able to go to the panto, attend family get togethers, enjoy the food etc. are all great positives Smile

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openupmyeagereyes · 04/01/2022 12:16

52 small changes - week 1 is drink more water
52 small changes for the mind - week 1 is to journal

The idea is that you keep doing them all as the weeks go on and at the end of the year you're a completely different person! Wink

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carriebradshawwithlessshoes · 04/01/2022 13:38

Thank you both. Yes, they are great positives, Open… silly stuff like he sat down to eat exactly what we did for Xmas lunch and enjoyed it (including a lobster and prawn cocktail etc etc!). And he loves being with family all that stuff. That’s all ok.

Inquisitiveness… I probably can’t explain v well but my box example was one eg. So DD would think gosh, what is it?? She would be poking it, trying to move it, persuading me to tell her what it was. I don’t think it would occur to DS, what is in there??

When we are out I may say DD look at that!!!! And point. Before she had even looked she would be on tenterhooks thinking what?! What have you seen mummy? DS is terrible at following a point. So, silly example, we are out and I say look! And point at a silly scarecrow in a field. DD would look, laugh, say something. DS would look probably past my finger and I’d see him looking at, I don’t know, some cars driving past on the road say. With a solemn expression, no oooo! No ahh that’s funny! When we holiday in Devon we go through lots of woods, DD used to shout ‘tree tunnel!!’ Where trees meet over the top and we would drive through. I doubt DS would even notice and if he did, his expression would indicate, it’s a tree. So what?

No I don’t think he cares at all how things work. When I get him to sit down to show him something he often cries because I’m detaining him from doing what he wants… running around jumping on our gym ball for eg.

Salts have ALWAYS given up on him because they get a box of toys with a lid on and say oooo!!! What’s in here!!!! What could it be???!!! Something that bites???!!!! Something that says moooo??! And they are all happy and excited and DS looks at them coldly, doesn’t even look at their box and walks off. I spent most of the hour with the last one trying to get him to not open the door to get out!! And they say ok, maybe not the box… I’ll get something he’s really motivated by, excited by… she’ll I get a balloon (jeez this was the last Salt too.) she would blow it up and hold it in the air all excited and say DS!! My balloon is going to fly!!! Oooo ready, steady…….!!! And then let go.

DS would give her (not the balloon!) the hard stare and not even track it moving through the air… he would just behave like she had done nothing and walk to the door.

I think they all felt a bit daft and shortly after would not want to work with him any more.

Don’t get me wrong, he is actually very expressive for ex when I take him to the pool you know that bit where you often can see the pool before you go to the changing rooms, he’s jumping up and down and grinning and pulling me. He was like that with the panto … lots of shared attention looking back and forth and the same with family members. I once said to an aba tutor actually, he’s only interested in experiences (of his choice) and people but not things, not objects. I’d stand by that now. But I’m not sure he grasps concepts and Xmas is a lot about that, concepts… naughty list, good list. And so on.

Does any of that make sense?!

MagratLancre · 04/01/2022 13:57

If it helps @carriebradshawwithlessshoes, DS only gets v excited about stuff he's really interested in and on his own terms. So if I say ooh a scarecrow when we're in the car, he might look, or if he's busy with his kindle he might not (gets into his own world a lot). I remember being a bit like this as a child. He also perceives it as a demand so too many requests to look at fun things etc redult in him getting cross for 'no reason' but of course the reason is too many perceived demands.
Xmas can be a nightmare for us with the good vs bad thing on Santa's lists so we just say santa only cares about people being kind and doing their best (otherwise he gets the idea of being 'bad' stuck in his head qnd is horrible on purpose just to test 8f santa will still come!!) Re: eating on Xmas day, I was prepared this year for lunch on laps in front of the TV and just having normal sandwiches, but then DS got upset because we 'weren't doing Xmas properly like in the supermarket qdverts' so we had to get the table laid and put out all the crackers etc...so you can't win!!
I think attention autism is a great idea to encourage joint attention but also joining in with whatever he's doing will help you to get to know what excites qnd interests him. It's do hard because our kids communicate in different ways to most kids. E.g. DS was just trying to get treats out of the high kitchen cupboard and looked v proud of himself for managing it, I told him off, and he was really horrible to me being cheeky etc. So I stopped going on and we had a cuddle, but most kids might cry if they felt upset, DS just gets really defiant ha!

carriebradshawwithlessshoes · 04/01/2022 14:50

Thanks Magrat and I hope you had a lovely few days away!! That all makes sense and as Open said upthread, you know, all children are different, she said quirky can be good and that’s true of course. With DS (do you do this??!) because I’m just so on edge about his development I worry about everything. DD may do in her own way something similar but I just let it go with her. So actually she was the one refusing to eat lobster and prawn cocktail on Xmas day but it didn’t really cross my radar. Sounds like the TV ads did the job Magrat!!!

I think what gets to me perhaps more so than you guys is all professionals tell me these attention/ interest/ inquisitiveness things are a pre requisite to speech. So the balloon example of the Salt… obviously she wanted DS to be so excited that he tried to vocalise go!! After she said ready steady. But if he doesn’t give a toss about the balloon he’s not going to say go, is he?!!!

The more I put my thoughts on paper the more I realise I’ve got to get him in a better educational setting. His current ms school hadn’t even heard of PECS ffs let alone attention autism bucket! I think I said the senco (yes senco) kept calling it pics (presumably she was thinking short for pictures…).

Anyway I’m minded to order a cooplands cake just for me danni for no reason!!! 🤣🤣.

Hope first days back have gone ok and mini open and mini Danni have lovely bthdays soon. We have a big lull now til end of summer when DD and DSs have theirs within 3 days (terrible timing!!!!!!).

Last quick qu then I’m off (honestly!!). The autism schools that your LOs go to (or are going to in the case of Open…), do they take Asd children across the spectrum or are they more for children who don’t have issues such as no language or toileting? Obviously many autistic children have issues around anxiety, behaviours etc but language, toileting and so on aren’t issues. I have found from my limited research that many pure autism schools do not want children who are non verbal, or who struggle with things like the toilet… they more want the super quirky, super clever ones who don’t still need mum to take them to the loo as I do with DS. I’m just curious because I’m always trying to work out what would be best for DS!!

openupmyeagereyes · 04/01/2022 17:05

Well I win the award for most awful parent today. I wrote this morning that I would stay calm today and then I completely lost my temper with ds this afternoon when he had a tantrum and I made things worse. Ds ended up packing some clothes in a suitcase and taking them out to his play house in the garden Sad. He seems fine now but of course I am still ruminating on it. We need to try some different strategies so I will be reading to try and come up with something and looking into whether we can get someone to help us. The play therapy has been no help at all.

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livpotter · 04/01/2022 17:11

Carrie ds's school take any child as long as the primary diagnosis is autism. A lot of the kids are pre-verbal, most of the kids are not working to national curriculum level although a small percentage is.
I know what you mean my ds and dd were born on the same day! Ok at the moment but it's definitely going to be an issue as they get older.

The 52 things sound good open. I've actually just ordered a journal and I definitely need to drink more water!

Hope you had a nice break magrat.

Dreading tomorrow morning. I did manage to get ds to do his lateral flow test today but any mention of school is met with a lot of shouting and anxiety. Just need to get him on the bus (really hope they don't mess it up with the Change of address).

openupmyeagereyes · 04/01/2022 17:15

Gosh liv what a coincidence! were they both natural deliveries?

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openupmyeagereyes · 04/01/2022 17:15

Has anyone watched Midnight Mass on Netflix? We're watching it at the moment.

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danni0509 · 04/01/2022 17:26

Oh open I win that award most days 🤣 I say every time after a tricky day, ds can't help it, I can. I then aim for better next time, next time rolls around I'm raising my voice again or threatening xyz. Which of course always makes things worse, I should of learnt long ago, but it's in the heat of the moment, I think you all know what it's like, all rationality goes out the window when it's 50th meltdown of the day.

I mismanage ds behaviour a lot because he's so damn difficult to work with, not a lot I do works and I feel helpless at being unable to control my own child.

Liv that's funny. Me and dh have the same name, boy / girl version. People find that really strange and we've had lots of comments over the years.

danni0509 · 04/01/2022 17:35

Ds had a good morning back. They expected a tricky morning but they said he'd been excellent. 👍🏻

I said well done ds your teacher said you'd been a good boy etc etc he said did I get star of the week and are you going to buy me a jelly pizza now 🤣

livpotter · 04/01/2022 17:37

Ds was an emergency c-section and dd was natural open.

That is funny danni, do you abbreviate to the same thing? Glad ds had such a good day!

carriebradshawwithlessshoes · 04/01/2022 17:43

Open we are all the same, don’t stress… it’s very hard sometimes. It will be good when he’s settled into his new school, do keep us posted!

Danni that’s funny! You sound very on trend, posh and becks!! I bet there’s some confusion sometimes!!

Liv, do you get the comments I get which usually are around ‘do you two have the same romantic week away each year??’. Truth be told (I appreciate I was lucky) I got pg v quickly after stopping the pill but refused to stop it on my summer hol as I wanted to enjoy the vino! So took a break after summer hols, pretty immediate pregnancies… result being 2 July babies!!

livpotter · 04/01/2022 18:00

Yes all the time Carrie!

openupmyeagereyes · 04/01/2022 18:33

Oh, do you remember romantic weeks away... Sigh.
Dh and I have our 10 year anniversary this year. When we were on our honeymoon we said we'd go back again in 10 years. Absolutely zero chance of that!

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dimples76 · 04/01/2022 18:52

Open definitely up for the 52 weeks thing. My 2 New Year's Resolutions were to play more with the kids and drink more water. Doing pretty well so far.

Carrie DS sounds v different to your DS in that he is extremely inquisitive and v talkative. He often asks inappropriate questions or asks questions but doesn't listen to the answer. I am not sure how much curiosity and cognition go hand in hand - my DS is not at all academically able. I bet that the right placement will have much better strategies for communication and that will probably bring lots of positive developments.

There is a Cooplands opposite DD's nursery. I have not had the cake you mentioned though - I don't think that I need more unhealthy treat ideas though.

DS is back at school on Thursday so I am just wondering what we should do tomorrow.

carriebradshawwithlessshoes · 04/01/2022 19:26

Totally bizarrely dimples he is hugely interested in people, too friendly, he will watch kids and go and take strangers hands, try to join them at the table in cafes etc, jabber on to random folk. If he could ask inappropriate questions I’m sure he would.

Just no inquisitiveness about ‘things’, including toys .

carriebradshawwithlessshoes · 04/01/2022 19:29

Ha ha open too true. I am always cold and DH will often look at me in my wooly socks and fluffy pjs, no make up and grey roots (I’m brunette, the buggers are the bane of my life) and say well, if we hadn’t had the kids we wouldn’t be having them now 🤣🤣🤣

carriebradshawwithlessshoes · 04/01/2022 19:30

Where did you go open?

We went to the amalfi coast for 2 weeks in sep. it pissed it down the whole time 😆😆

openupmyeagereyes · 04/01/2022 19:52

Canada. Not a journey I want to do with an autistic 8 year old!

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livpotter · 05/01/2022 07:59

3.45am start and as predicted the transport team didn't tell the bus team that we'd moved house. Really helpful. Poor ds was very stressed this morning but he has gone to school.

openupmyeagereyes · 05/01/2022 08:17

Oh no, liv! Glad he went in and hope tomorrow is better.

Ds up since before 3 here. He actually listened to a sleep story on my Calm app and then got up Hmm

Hopefully I can get him in the car for a nap later.

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MagratLancre · 05/01/2022 09:23

Oh @livpotter I hope it goes ok, that's the last thing you need!
Good luck @openupmyeagereyes and to everyone returning today. DS has gone in with a late taxi (stuck in traffic apparently) and my inset is from home so just waiting for Teams to start!
We went to Egypt for our honeymoon with a great company, slept in the desert, trekked up mountains etc. We said smugly, oh having kids will never change us! Ha! We still do go on adventure type holidays though as we both find beaches really boring (and now very stressful thanks to DS' obsession with the sea) - thinking about Northumbria for Easter actually as I'm a bit of a Viking nut and would love to visit Lindisfarne etc.
Happy bday to your DS @danni0509!

openupmyeagereyes · 05/01/2022 09:30

Magrat dh and I never did beach holidays either, much preferred skiing and exploring new places. These days we rent a cottage and do days out for ds. Hopefully we'll be able to do something for Easter this year (Covid permitting...).

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danni0509 · 05/01/2022 10:10

Oh his birthday isn't for 2 weeks, I just go get his bits when I get chance, Grin but thank you.

Liv hopefully he's ok getting on the bus tomorrow, he gets picked up early doesn't he! Ds doesn't get collected until 9.05am, although it should be 8.30am but he goes later than the other kids. Transport don't communicate here either, when my dh had COVID in June I rang to say ds couldn't come for a week or whatever it was, next morning, taxi turned up as normal, I had to stand at the door and turn her away and ds was kicking off big time because he wanted to go in the car.

Ds driver is going on holiday after his birthday and he has a replacement driver for 2 weeks, ha ha ha. Hmm Dreading it.