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

[openupmyeagereyes]

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

that sounds like a horrible incident re the glasses @dimples76 , hope it didn’t put too much of a dampener on what was otherwise a success it sounds like! Love reading these questions , can imagine of course often awkward and socially inappropriate but sounds like a real character. (DD2 also asked if I had a baby in my tummy yesterday. Combination of bloating from me and wishful thinking from her!)

we had another crap night. From 1am DD just crying in such a horrible sad almost moaning way, different from a meltdown and just awful to see. Then when that stopped after an hour or so we had a couple hours hyper , climbing, jumping, screeching and then another meltdown. She finally slept at 445. Dropped her off this morning and they put it down to the heat - wasn’t hot at all here last night! Same this week with MIL ‘all children have a few meltdowns’ - these people are sweet and our support system so I have to be patient but the need to put a positive spin on everything makes me feel kinda gaslighted tbh.

I know they're probably just trying to help @Ahna65 but I totally get how you feel. Before DS was diagnosed, my parents were in total denial despite all of us knowing. They kept saying oh DS is fine, like yes I know he's fine but he's also autistic and sat that point had no concept of danger or ability to listen to me so it was very hard. So I'd see all these toddlers around me actually listening to their parents and wonder what on earth I was doing wrong. I felt relief when the reasons became known (asd pda) but family just kept downplaying and minimising. In retrospect, i think they were just trying to reassure me, but it had the totally opposite effect!
Found out today DS is moving classes next year so interesting times ahead! We also got the referral through for his early puberty finally but I mean, that is already totally in full swing! So I'm going to focus on enjoying the summer and not just worrying about everything all the time. Easier said than done!!

Yes, totally resonates @ElizabethBennetsBoots . To be honest I find nobody says the right thing all the time, and I guess maybe I wouldn’t either in their shoes.

why the class move? Was that unexpected?

Thanks Ahna I clearly reacted too much to the glasses incident as he has grabbed at them several times since.

That sounds like such a tough nightAhna. Not really helpful when others minimise either.

With DS he presents a very different version of himself to the outside world than to DD and me. None of my friends or extended family have ever seen him be violent or heard his death threats or insults , with them he is mostly charming, funny and curious. And I think they find it hard to reconcile their experiences with him to my descriptions of daily life which makes me feel more isolated as only my Mum and sisters see the reality. Although we had a funny exchange at my Mum's yesterday when we collected DD. DS wanted to go in Granny's pool but I said no (he was exhausted and it was windy and showery). So the exchange went as follows:
DS (to me): If you don't let me go in the pool I will throw sand in your eyes
Granny: Well done DS, you have explained your feelings very well
Me: Eh? DS it is good to let me know when you are angry but not like that
Granny: What are you talking about Mummy?
It then becomes clear that Granny didn't have her hearing aids in and thought that she had heard DS saying, 'I am so sad with you right now"

🤣🤣🤣 dimples.

@Ahna65 that sounds really hard. I genuinely don’t know how you manage those nights and then can physically make it in to work (DH too.) When DS is up he is just up, sometimes being a bit giddy, but no crying or meltdowns. Things seem so much worse in the night too.

@ElizabethBennetsBoots when you say DS didn’t listen to you as a toddler do you think he was listening but ignoring or that he didn’t understand? Aside from speaking understanding bothers me greatly but I don’t know what I can do if anything. Danni talked about her DS having no understanding even of a basic command like sit down to having amazing understanding but I don’t how that happened. I asked her and she didn’t either. DS is just unfathomable. He understands 7 x 3 but then if, say, he’s in the trampoline wearing his glasses and with a plastic cup (as he snuck in earlier) and I say DS please give me the cup he will still do things like remove and hand over his glasses. It stresses me out no end. Me saying after school stuff like ok coat off and he goes to take off his shoes! I’ve had his hearing tested and it’s fine, sometimes I really worry he doesn’t understand me??and what on earth do I do about that?! He will never speak if he doesn’t understand will he? Sometimes it seems worse than others. As all your DC chat on I assume no one can relate to this issue, Ahna maybe..

@carriebradshawwithlessshoes as of now I just don't know how much DD understands. I tend to think it's quite limited, she definitely understands cues and things like if we are going out but very rare that she would understand only words. Maybe 'no' said in a strong tone, but that's more the tone then. Although the other day I asked her for a kiss and she did give me one which was utterly random. But I think , and daycare agrees, that it's pretty limited atm. Can you remember how DS was at this age (turning 5) carrie?

Most days I feel I deal better with the lack of sleep, I've never needed loads of sleep, but it's the distress I really struggle with. Really struggled last night and ended up having a pretty tearful day. And looks like a long evening ahead... pouring myself a glass of red. Enjoy the weekend all.

I get you @Ahna65 that must be very hard, especially not knowing what to do to help her.

We held DS back a year for mainstream and he’s young for his year so he turned 5 in the June then started ms in the Sep. We had at that point had time over COVID of me starting to get him sat at his desk selecting things, numbers, colours, words etc. so I felt positive about that. At home he was smiley, sociable, generally quite good. I remember at that age him really getting into kicking his ball in the fields during the time we were allowed out over lockdown. He also got used to his scooter. He could still have mood swings, was still a flight risk. But I think no pressures over lockdown and me furloughed wasn’t a bad time. I have pictures of him stiring cake mixture with me and DD, trying to play a recorder etc. He was very impulsive and seemed to not know right from wrong like I saw him once before I could stop him grab an apple off the conveyor belt in Sainsbury’s (customer behind us) and start eating it.

But then omg school were on me from day 1. He was there pinching and biting staff and kids, they said he had no clue when he had wet his pants and didn’t react to it. He would do stuff like fiddle with stuff, drop it and then walk off not acknowledging he had dropped it to do something else. He wouldn’t stay in the classroom, and they moaned was a liability in that he put everything in his mouth. It was a very negative time, I’d have palpitations waiting for him after school. Glares from other mothers. Just really kind of not with the programme of what he was supposed to be doing. That’s how I remember 5. So kind of very split between home and school which really has flowed through the years after that.

Enjoy your wine Ahna. Hope that you have a better night.

Carrie for a long time DS's expressive language was a lot stronger than his receptive language. Which I struggled to understand but I believe is pretty common with Autism. Following instructions has always been a big challenge for him. But it's not always clear why - hasn't heard? hasn't understood, isn't able to? or just following his own agenda. I think that I (and others) often over-estimate his understanding because his speech is better. I remember once someone suggesting that they use more visuals with him but their view was that he didn't need it. I do use them a fair bit to try and reduce demands and because I don't think that DS can keep the instructions in his head - working memory and executive functioning are v weak.

@carriebradshawwithlessshoes think his understanding improved after about age 3 but mostly after that it was more about ignoring me, being in his own world, hyper focus, and avoiding my demands as part of his pda. He was very much like your DS when younger in terms of dropping stuff and walking off, not understanding social rules etc, but now has gone the other way and is very black and white with rules and we all have to follow them. His working memory is still quite poor compared to long term memory and he will get time confused, so he thinks something that happened a few days ago was months ago for example. Visuals really help him know what to expect next at school.

Did you do anything to effect that transition @ElizabethBennetsBoots (understanding, social rules etc) or did it just happen?? I worry for DS it just never will…

@carriebradshawwithlessshoes I think it was mostly time and age. Special school have helped a lot with using visuals etc and making him feel confident in himself. He still gets upset if we just say no to things so it's all about explaining why and picking battles etc. We use a lot of pda strategies!!

Ahna I hope you had a better night. Does dd nap in the day when she’s been up half the night?

I’m watching Keane on Glastonbury. Tom’s voice is still good isn’t it? We will watch Coldplay tomorrow, it’s on too late for us thanks to ds.

Keane were amazing recently in Leeds. We also saw Coldplay when they did their last tour at Wembley, Tom Chaplin imo has by far the most impressive voice though CM was more the showman on stage. Hope everyone’s weekends are going ok.

We saw Coldplay in 2012, they are great live. I thought Keane were terrific too.

I would like to see more live music of any genre, really.

DS has caught the shit sleep bug. Unlike others on here I’m struggling to power through, I feel really sickly and dizzy today, I really don’t know how you do it. He has changed in that before he would just sit up and shout or laugh in his room, now he is getting up and quietly coming into ours and then standing over us/ trying to get into bed (which gives me a heart attack in itself!). For those who have night wakers do yours do that? Do you let them stay? I find with DS the key is as little palaver as possible so I’ve let him stay a couple of nights and he’s dropped back off but last night he appeared again at 3am got in but then proceeded to just giggle and toss and turn, sitting up, laying down etc until school time then just went off to school! As I say I feel fairly rubbish today.

hes on 2 lots of sleep meds too! I mean really, on that basis, he should be comatose…???!

carrie I think it’s that over time you adjust because you have to. And you go to bed earlier yourself. If it’s not typical behaviour then it’s more likely that you feel worse. Though of course chronic long term sleep deprivation is hellish. Hopefully you know what I mean.

Ds has rarely come into our bed. For us it’s a case of trying to keep him in bed until he drops off again or failing that, one of us getting up
with him and the other sleeping. If it’s really early we take shifts.

I hope he settles down again soon.

Yes @openupmyeagereyes that makes perfect sense.

Ds has been sleeping better over the last several days. Today he slept until 5:45 which is pretty good here.

Lots of school stuff going on over the next couple of weeks. Does everyone break up on the 19th?

@openupmyeagereyes DD finishes next Weds. DS the 19th but we are going to Croatia on 17th so he will finish a little earlier.

Exciting carrie, I hope you have a great time.

DS finishes on 19th too. He's moving class next year as his school generally mix the classes each year and he's getting a bit too old for the class where he is. He's excited but anxious already. I had my appraisal and all went really well hooray. If DS wakes before 6am, he goes back to his bed and I will lay on the floor a bit until he's settled. After 6am, he can come in our bed and play on his switch. Otherwise DH gets no sleep and he really struggles. Our issue at the moment is that he's dropping to sleep so late (combination of cough and light nights) that I'm having to wake him up for school and then he's grumpy at having no time in the mornings. He keeps wanting to stay up to watch the football!
Have a lovely holiday @carriebradshawwithlessshoes

Thanks… not been before, could be a disaster, obviously I’ll report back either way 🤣

Well I have both my two in with me at the moment. DD in my bed and DS on a mattress on the floor. It's not ideal but they're both sleeping well just waking up earlier than J would like and I miss reading in bed. It's my sleep that is terrible. I keep waking up every hour.

After a successful visit to his new school with me last week DS's behaviour has been rather challenging. School are struggling with him this week and he has been hitting and kissing other children. Only just over 2 weeks to go...tomorrow is a half day as he is going to visit new school with his 1:1 in the morning and then on Friday it is move up morning at his current school and I am keeping him off. I probably might have just taken him out of school now but I am on the final push on my thesis. I plan to submit next Thursday/Friday. I'm hoping once that is in it will reduce my stress levels a bit - but tbf it's never knocked the DC off the no.1 spot when it comes to worrying!

DS and I are going to see Six at the theatre on Saturday. I booked it ages ago and it now seems like bad timing but hopefully will take our minds off things ...

Oh the theatre sounds great Dimples, enjoy! DS just won’t sit that long, cinema either. I was feeling brave and booked the cinema last hol with seats at the front. By the time the trailers were over he had had enough, that’s his attention level, just got up to go. Total waste of money.

the whole bedtime debacle is ridiculous really. A bedtime earlier than 10pm guarantees DS will be up before midnight. A bedtime after 10 used to guarantee sleeping through but he seems to be waking after 4 hours atm. So 10.30 sleep 2.30 up. Even therefore Open going to bed at 11 would still mean 3.5 hours sleep on nights he doesn’t go back. DH had to wfh today just to get an hours sleep in the day. I’m in the garden typing this and I actually feel like I’m on a boat moving from side to side (on a rare occasion no wine resulting in this.) Def too old for this.

good luck with the thesis Dimples!! Sounds exciting (and hard!). I’ve struggled to compose a 2 line client email today.

I hope you had a better night carrie.

Ds wants to go and see Inside Out 2 so we’ll go this weekend. He’s ok at the cinema though he can be a bit sensitive to content so hopefully it will be ok.