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Thread 13: autism and any other additional needs A/W ‘23

1000 replies

openupmyeagereyes · 19/10/2023 06:21

Thread 13.

For parents / carers of disabled children, autism, adhd, and all other related neurological conditions. Most of us have children in primary school. But everybody welcome!

Chatting about anything and everything related to SN!

Links to previous threads.

Thread 12
https://www.mumsnet.com/talk/special_needs/4816294-thread-12-autism-and-any-other-additional-needs?page=1

Thread 11
https://www.mumsnet.com/talk/special_needs/4711291-primary-school-auties-11-2023-is-here 

Thread 10
https://www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

Thread 9
https://www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022

Thread 8
https://www.mumsnet.com/talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8

Thread 7
https://www.mumsnet.com/talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7

Thread 6
https://www.mumsnet.com/talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6

Thread 5
https://www.mumsnet.com/talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?page=36&reply=104240251

Thread 4
https://www.mumsnet.com/talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4

Thread 3
https://www.mumsnet.com/talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3

Thread 2
https://www.mumsnet.com/talk/special_needs/3451020-Reception-auties-2018-19-thread-2

Thread 1
https://www.mumsnet.com/talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed

Primary School Auties 10: Summer and beyond 2022 | Mumsnet

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 par...

https://www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

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7
SpinningTops · 23/12/2023 08:12

Hello, hope I'm ok to message here but thought this thread would be full of knowing parents.

DS is 5 started reception this year and having spoken to the GP they are going to refer to CAMHs for an autism assessment. I know that's a long process and even if we do get a diagnosis then there will be little follow up support. His main thing seems to be need for routine and fixations over minor things. Also anxiety about what is coming and how long things will take. He's a bright boy, so school don't seem considered. Just to give context and I know the term isn't used any more he would probably fall more into what used to be referred to as Asperger's.

I'm really struggling with this run up to Christmas, we're all in the house together, try to get out but with the dreadful weather that's tough. We can't go anywhere with shops as it ends in a disaster. Went to a kids museum yesterday which we had to leave before we were ready because he was getting so worked up and obsessed about the gift shop (we have a blanket policy of no buying anything from shops as this has been a major issue).

I just feel deeply sad for my daughter. She's 7 and rarely complains about having to leave places she's enjoying. Everything seems to increasingly be revolving around DS.

We have a week of visiting family and uncertain situations ahead. Not overly understanding grandparents and I'm already anticipating complete refusal to eat the food they lovingly serve.
I'm not currently feeling much Christmas cheer so need to buck my ideas up and just put on a brave face.

SalmonWellington · 23/12/2023 10:35

Hi @SpinningTops - can DS tell you why the gift shop thing is so important to him? Explosive Child qpproach (doesn't work for everyone, but unlikely to do harm) is to tease out what is so important to him, explain your concerns and get him to propose a solution, then test it out.

It can help reset from parents vs child to both sides working together. Can also surface issues that you'd never think of as an adult.

ElizabethBennetsBoots · 23/12/2023 10:44

Hi @SpinningTops firstly, big hugs, yes it can be tough. Always remember that your DS is probably finding it even tougher and didn't ask to be born with such anxiety and need for routines etc. It's just how his brain works. My DS sounds very similar.
I think, as hard as it is, often with ASC kids we need to radically shift how we think about and view family life, big events, what's important etc. Social media is full of big family gatherings and children behaving in certain expected ways (posing with santa, wearing matching jumpers round the tree) and we're conditioned to do that just as our childhood Christmases were. However, and it's a big however, if one of your children can't cope with that, then is it worth thinking about how you could compromise? Family might not be accepting at first, but tbh, our families were only supportive once they'd seen DS in full meltdown and it's always better to avoid it getting to that stage. So for example, we used to go to my DH's big family get together on Boxing Day. DS was fine when he was tiny as we could put him in his little chair etc. But a few years ago, he just totally melted down: too many adults, too many kids, too much noise, too many expectations. So last year they came to us last year in smaller groups, which was ok, but this year we're going out for a meal instead. We will see!! Honestly, if your DS is ready to leave somewhere, I wouldn't make him stay. Could you or DH take him out while the other one of you both stayed with DD? It's not 'teaching resilience' to make him stay it'll just head into a meltdown as by that point, his behaviour is likely beyond his control. Small steps often work best.
Remember your own self care too.

SpinningTops · 23/12/2023 13:17

SalmonWellington · 23/12/2023 10:35

Hi @SpinningTops - can DS tell you why the gift shop thing is so important to him? Explosive Child qpproach (doesn't work for everyone, but unlikely to do harm) is to tease out what is so important to him, explain your concerns and get him to propose a solution, then test it out.

It can help reset from parents vs child to both sides working together. Can also surface issues that you'd never think of as an adult.

We can never really make much sense out of the shops problem. It's that he 'needs' to get something. It can be anywhere we go and the first thing he sees he was fixate on, say he has to have it even if he doesn't know what it is that he's picked up.
We do also have the trouble in places like libraries where he can choose something. He's had meltdowns over making the 'right' choice.

We've tried giving him a small amount of weekly pocket money but that didn't help. Instead he'd try find anything for the amount he happened to have and we struggled with watching him spend money on something completely inappropriate. For example he had a meltdown over wanting to buy an iTunes gift card despite having no idea what iTunes is.

So we now have a blanket 'we buy nothing on a whim from shops' and have for many months. We try to not even go in them but yesterday he knew it was one we had to pass through to leave the museum and got a bit fixed on the idea.

We have got the explosive child book which I bought for my husband to read but it was more for DD. Perhaps I'll read it with DS in mind. Trouble is he struggles to explain the problem, for example he will just say 'I need to' or 'because I have to' if I try get to the reasoning behind his difficulties.

ElizabethBennetsBoots · 23/12/2023 13:25

Having trouble making choices is a common problem rooted I think with us in anxiety over never seeing the items again so never being able to possess them. Tricky. We probably spend too much when we do go to shops but don't go often.

SpinningTops · 23/12/2023 13:34

Completely agree about reassessing these big events @ElizabethBennetsBoots.
Trouble with this is that all DHs family live a long way away so we make the effort to have a trip to see them once a year.
And because it's a once a year thing we have to try see all family, think, separated parents, many siblings. Lots of long family dinners. This time because lots of people are coming I have a feeling our sleeping situation might change daily. So one day we might all be sleeping in one room together, another day another room swap. It's basically an autistic kid's nightmare!

The other problems is DH doesn't want to say about DS possibly being autistic. Not so much because he's embarrassed (though he did take a long time to get on board with the possibility) but pretty much all the young boys on that side of the family are autistic but with much greater needs and I think there's some odd reasoning in there about not wanting to say that DS might have difficulties when the others have much harder lives.

The family would be supportive I'm sure but not sure they would see his quirks in the context of the others so think we might get 'surely not?' Type of comments.

It's fairly obvious to me as he currently sits there playing with his electricity set repeating the same random phrase of 'coconuts have water in them' again and again!!

It's a tough one really but I've learned to leave DH and his family dynamics alone Confused.

SpinningTops · 23/12/2023 13:37

ElizabethBennetsBoots · 23/12/2023 13:25

Having trouble making choices is a common problem rooted I think with us in anxiety over never seeing the items again so never being able to possess them. Tricky. We probably spend too much when we do go to shops but don't go often.

This rings true. We've tried the 'put it on your birthday / Christmas list approach' but he gets very upset about it not being the exact item he's holding.

He also has trouble leaving anything he makes. For example activities where you make something to hang on a communal Christmas tree, we can't hang it up, we have to bring it home.

FluffyDiplodocus · 23/12/2023 23:15

We take pictures of a lot of things on my phone. He never asks to see them again so I delete them, but it gets around the anxiety of never seeing something again.

Also hello! I’ve only just found this thread after a long evening with my 6yo autistic DS having a horrible two hour meltdown. I’m so over the disruption to routines of Christmas! Just wrote out a checklist of everything for the next three days to try and give him some structure, fingers crossed…

ElizabethBennetsBoots · 24/12/2023 19:35

Happy Christmas everyone when it comes! Almost there!!

dimples76 · 24/12/2023 19:42

Merry Christmas everyone! DS coped amazingly at our annual v rowdy family party for 30 at my Mum's house and did some great singing

openupmyeagereyes · 24/12/2023 20:13

Merry Christmas everyone! Have a wonderful day, however that looks for you Wine

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Ahna65 · 25/12/2023 07:01

Yes merry Xmas all, hope it’s a happy day xx

carriebradshawwithlessshoes · 27/12/2023 22:43

I hope everyone is ok and enjoying the break. After a Christmas where everyone was unwell last year this is going better. DD has been under the weather but soldiered on. We had dinner Christmas Day at SILs. DS behaved well, showed more interest this year in presents than any other year, sat at the table, ate the food, no meltdowns. DH said ‘for us’ that was good! Lots of walking has been done since, interspersed with a few pubs! Late nights, late starts, just general family stuff.

So could be worse! Thinking of you all!! X

Jules912 · 28/12/2023 10:53

Christmas has been ok here although we're not seeing family until this weekend so just been us. The mini trampoline we got DD seems to have been a big hit, which is good as it takes up half of her room.

MyopicBunny · 28/12/2023 12:28

Hi everyone. I hope you all had an enjoyable Christmas. Dd4 was with her dad and dd2, dd3 and I had booked an air bnb for Christmas Day and it was lovely to unwind. We cooked Christmas lunch and played board games. Although I missed dd4, she's usually permanently glued to me so it was nice to spend time with the older girls.

openupmyeagereyes · 31/12/2023 09:52

Glad to hear that Christmas has gone well for you.

carrie great ds behaved well at difficult SIL’s.

Jules glad the trampoline was a hit.

Myopic sounds relaxing.

We’ve had a good time, though ds’ days are very similar to usual with screen time routines etc. He enjoyed all the present opening and had dinner with us which was nice. He did well with family on Christmas Eve and Boxing Day and we had some friends round this week.

We had a few days of later starts but early again this morning as he wet the bed! Hopefully we can get him to bed earlier tonight.

Hard to believe it’s all back to school in a few days. The whole month has gone so fast.

Is anyone making any NY’s resolutions?

OP posts:
openupmyeagereyes · 31/12/2023 20:08

I just tried to post on the thread where the OP was upset about criticism of her parenting by her family. It was taken down as I tried to post. I’m just going to put this here in the hope that she sees it:

This must be really difficult for you. Do you have a DP to support you?

You know that there’s more to it than your parenting so try not to take it to heart. They are speaking from a place of ignorance.

Do you have any friends in real
life that understand and are supportive?

OP posts:
openupmyeagereyes · 31/12/2023 20:13

Hopefully I haven’t committed a faux pas…

Anyway, happy new year everyone. As always, I am very grateful for this thread and all of you Wine

OP posts:
dimples76 · 31/12/2023 21:06

Christmas has gone very well for us. Both children have loved all their presents and we seem to have hit the right balance between quiet time at home and socialising and going out. My highlights were DS dueting with my Mum at our annual Christmas Eve party singing and going to the beach on Boxing Day in glorious sunshine with the extended family.

We are having a sleepover at my Mum's tonight which might be pushing my luck!

2024 feels a bit daunting with hopefully outcome of the neurodevelopmental assessment, secondary school place decision, EHCP appeal hearing and the small matter of submitting my doctorate ...So really hoping for suitable special school placement and more complete diagnosis.

This thread has given me so much support. Wishing you all a happy and healthy 2024.

ElizabethBennetsBoots · 01/01/2024 08:50

Happy New Year everyone! We are away for a few days so not been able to post much. Booked a steam train for today. Starting my Dry Jan today and really looking forward to it. Going to try healthier eating too this year.
@dimples76 so glad it all went well.
@openupmyeagereyes I'm sure you didn't commit a faux pas and I'm sure your advice will help.
My resolutions are to be kinder to myself, live in the moment more, and exercise more. I too am extremely grateful for this thread and for all you amazing wonderful people on here 🎉✨️🎉
My DS keeps going on about vomit juice this morning, he made it up and thinks its the funniest thing ever. Of course telling him not to say it makes it all the more hilarious to him, so I'm stoically ignoring it! He's also asked me what melted diamond looks like, so off to look into that next! Makes a change from poo jokes!

carriebradshawwithlessshoes · 01/01/2024 17:34

Happy new year all! Walking today as it’s a lovely day!

openupmyeagereyes · 04/01/2024 04:41

Hello all. Back to school today and ds up nice and early…

I hope everyone has had a good break. I’m a bit apprehensive about how today will go but prepared for it to be difficult. Fingers crossed for everyone.

I feel we must be doing something wrong as we don’t have the ‘mountains of paperwork’ that I see everyone saying they always have on other threads. What are we not doing that we should be?

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carriebradshawwithlessshoes · 04/01/2024 08:18

Good luck Open. Not til Monday for us. Good luck to others back today!!

re paperwork what do people say they are doing? We don’t either. I can only assume it relates to specific things like..

ehcps, getting or amending
DLA, getting or amending
appeals re provisions
getting a diagnosis

cant think what else there would be?

Ahna65 · 04/01/2024 08:23

Happy new year all and good luck with the back-to-schools. We only had a week off so DD was back on Tuesday, she seemed fairly OK to be back although she went in with a sprained ankle after a fall on Monday, only just walking again today really. We were relieved it wasn't broken and she adapted pretty well to walking using furniture, crawling, etc.. Didn't seem to bother her as much as expected!

The festive period was overall OK, harder days and better days. As expected I suppose!

openupmyeagereyes · 04/01/2024 08:45

They are not specific carrie, just ‘mountains of paperwork when you have a child with SEN’. Glad it’s not just us. Diagnosis & EHCP done 6 years ago (but once & done) and AR not very onerous. DLA only every few years. Err, that’s it for us I think. I fully appreciate if you’re struggling for a diagnosis or provisions etc. then there’s more, but glad we’re not missing a trick.

Poor dd Ahna, hopefully her ankle is better soon. At least dc usually heal quickly.

Ds has gone in ok. We’ll see what the day brings!

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