Primary School Auties 11: 2023 is here

[openupmyeagereyes]

Thread 11.

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

Oh no Uno! Is he often like this or is it something he’s just stumbled on and thinks he’s being helpful?!?! Have you responded?

Jules hope everyone is better soon!

Probably just thinks he's being helpful. Going to.ignore it and ask DH to have a word.

No wonder you're upset Uno.

Hope that everyone recovers soon Jules

Glad to hear others are making the most of the sunshine. I can't wait for a few days off next week.

I got DS to do an online Zumba class with me earlier which was fun.

Planning to watch the Chris Packham documentary later

We’ll watch that sometime this week dimples. I hope it’s uplifting. Can people post when they’ve seen it please?

Also planning to watch will definitely share thoughts after!

was also thinking might be a good one to suggest family etc watches (have had similar suggestions to you @UnoQueenie , always hurtful but I think maybe w my family it’s partly they don’t educate themselves enough on it / maybe I can help suggest stuff)

Open I wouldn't describe it as uplifting. I cried most of the way through it. However, the way they worked with 2 autistic adults to share their stories was very positive. It did make me wonder if I am trying to get DS to conform too much - it's not something that I am consciously trying to do but hearing one of the participants talking about the impact masking has had on her really made me question myself. Where does trying to make it easier for him to navigate the world become denying him the right to be his true self. Maybe not one to watch close to bedtime- think I need to find something light and fluffy to watch now.

I think perhaps my reaction was more emotional than 'normal'. One of my friend's daughter who is autistic and has an eating took an overdose last week. She is only 12, and has been sectioned. She is now struggling to sleep or eat. It's just so heart breaking, she has been expressing suicidal thoughts for quite a while, but according to the profs 'wasn't in crisis'.

Oh dimples I’m so sorry about your friend’s daughter, that’s terrible. 12 is so young

Where does trying to make it easier for him to navigate the world become denying him the right to be his true self.

It’s very hard to know, isn’t it. I’m nervous about watching it now (because it’s sad).

Oh it sounds like I'll def cry through it - i'm definitely a 'cry-er' and the trailer already was quite moving. I found 'the reason I jump' emotional too. There was one bit where one autistic person described memories they had from even like age 2 - really vivid. this made me think I need to be better at getting less emotional around DD during hard times, I don't want her to remember that.

Yes, the Q of making it easier vs denying true self is a HUGE one isn't it.

Hi. Hope everyone is having a nice half term. Ds has been on 4am wake up calls this week so it’s been long days. He’s not been too bad otherwise.

I took ds on the train to Meadowhall yesterday, just for a day out and he could spend the remainder of his birthday money, game changer having a wheelchair, can’t remember if mentioned it last year when I did it?

Anyway, can’t take ds anywhere, I would genuinely rather drink my own piss than take ds to a shopping centre 🤣 but i hire a wheelchair for £1 for the day and honestly he doesn’t move a muscle except for in the lush shop when he jumps out and chucks all the bath bombs in the big bowls they have.

2 kids in his class have a wheelchair and he asked me before if he could have one, so I had an idea of trying to buy one for trips out, he’s always complaining his legs hurt cos of his short tendons etc and if we are walking all day not only is he a nightmare bcos of his adhd darting off and causing me a nervous breakdown etc he’s kicking off about his legs so we can never stay out long.

So I checked with the shopping centre last year and they hire them out, so I’ve done it twice now and it’s brilliant.

His school told me to go through wheelchair services to get one but said it was a lengthy process, but I’ve seen one I can buy online for £169 although it’s not a child one, but neither is the Meadowhall one, I just need something to sit him in and push, so I’m thinking of just buying it and folding it in my shed when we don’t need it.

Honestly made my life so much easier the two times I’ve done it!

Sorry for your friend dimples x

Sounds really useful for you danni, do you strap him in? I’d be worrying he’d still get out and run off 😆

There’s no strap on it, he just sits in it, then if he sees something like lush or whatever he likes, he jumps out, then I get him back sat, he really likes sitting in it.

I think on the one I’m looking at online it does have a seatbelt you can attach, so that will be useful for if we are out and about as I don’t want him jumping out if we are outside.

That sounds great Danni

Glad everyone has been enjoying the weather (and some better sleep!) All good here although we've all been sick (first gastro and now the kids both have a cold) - so I'm pretty glad we weren't trying to go away anywhere as it would have been miserable! As it was we've had an OK time other than the sickness, just doing little things fairly locally when we've been well enough to. I think the kids have actually enjoyed having loads of tablet time! We managed to go to the cinema today and see the Puss In Boots movie. The trailers were CRAZY loud compared to the movie - even DS needed his ear defenders and he's usually fine! But the movie sound level was OK and they both enjoyed it so that was good.

Actually I'm having a bit of a problem in that the kids' ear defenders seem to be too tight for DD's head now - they can give her a bit of a headache. But the adult ones I think are still going to be too big (or are super-expensive noise-cancelling things that I'm not sure are what she needs, and probably wouldn't be safe to send her on school trips with etc. as quite likely to get lost). Does anybody have good ones for their DCs that they'd recommend?

I haven't seen the Chris Packham documentary yet but have read only positive feedback (which is unusual for these things!) so I'm looking forward to it. Sounds like the team has done a very good job, but I hadn't properly thought about it still being a hard watch so I will have to think about when to watch it. I was going to watch it with my OH but on reflection if I'm going to cry (which I probably am) maybe it will be easier to watch it by myself first...

Hope everyone has a lovely last few days of hols!

Light sorry you’ve all been poorly. Gastro things are so awful.

We saw puss in boots and the adverts/trailers were super loud for us too. Ds found the movie a bit scary though (the scenes with the wolf).

We saw that movie too and had fear over the wolf and also questions about death more generally and if cats really have 9 lives (no, it's just a saying, but so much confusion caused!) I think the message about being thankful for your life etc is really complex and subtle for most kids to understand let alone ND literal kids. We went to an asd friendly showing though so no trailers etc, as DS just can't sit through them all and then still be able to sit for a whole film, and it's quieter in these showings re volume etc.
DS had a funny dream so came into mine and DH's bed at 3am! Poor DH ended up in DS's bed to try and get some sleep (he's working this week). I couldn't even sleep myself until 1am (I was watching stuff on my phone) but at least we're still relaxing in bed now. And it's almost the weekend and I have a night out planned tomorrow hooray!

Uno I hope you enjoy your night out. How exciting. Sorry you had a rough night though. With ds I think it was a combination of the wolf scenes being scary and the worry that puss was going to die, even though I kept telling him he was going to be fine. If I’d seen it first I wouldn’t have taken him. I can see why it was a PG.

Ds has actually slept until 5:30 the last two mornings 🙌

We were going to see the new Puss in boots today but DS and I still have Covid so not going anywhere. DD's a sensitive little soul so now thinking it might be too scary for her anyway.
I forgot to record the Chris Packham thing, need to see if it's on iPlayer.

We saw puss in boots too. I think the bits with the wolf were pretty scary too. I only took ds as dd was in holiday club. He loves scary things though so was fine. I think dd would have been scared.

Sorry about all the sickness!

That's great about the wheelchair danni.

Light would dd tolerate in-ear noise cancelling ear plugs? I use loop ones and love them (found them recommended on an autism thread). Ds still uses the Ed's Kidz ear defenders.

We're having a high anxiety week here. Lots of demands and questions. It's been hard work.

Uno did dh speak to fil?

liv I hope the anxiety settles down.

Ds has been counting down the days until school starts as it’s going to be a terrible day, apparently. It breaks my heart a bit, I hate the idea of sending him somewhere he’s not happy. I will hopefully hear from the EP next week.

Oh no @openupmyeagereyes poor thing - that must be hard to hear. I hope the EP comes back soon and that the school can support DS better to feel happy there. Though I guess transitions are always hard. Sounds like a few of our kids are anxious at the moment (unsurprisingly I guess).

I'm not sure about in-ear @livpotter . I find it very hard to tell with DD's sensory stuff. Shoes/socks are still a massive issue and basically the bane of all our lives (not least DD's of course!) And she won't wear the standard winter uniform for her school due to sensory issues, only the summer dress (with long-sleeve t-shirt and leggings underneath in the winter or she'd freeze!) But then she can really surprise me with other things - like she manages to wear shin pads and a mouth guard for sports lessons. So they might be worth a try. I'm just not sure if any of us would use them if she didn't get on with them - but I guess they are something she might want to revisit later anyway.... They actually aren't as expensive as I thought so we should probably give them a try!

Yes the wolf was very scary. DS actually came and sat on me whenever he appeared on screen (and now he's nearly 6 he's getting quite heavy - but I'm reminding myself to enjoy it while it lasts because he'll find me horribly embarrassing before I know it!) DD seemed fine - it's funny as she used to really hate peril and anything scary, but Horrible Histories seems to have desensitised her to everything else... She just came back asking if she can go to World Book Day as Death (might be time for some Pratchett...)

Well I’ve just watched the CP documentary. As the mum of a non speaking child I found it thoroughly depressing! Even Murray who was obviously intelligent couldn’t really communicate effectively, as CP said it was torture for him. The others in the centre that was filmed seemed to have even less ability to communicate. None really reminded me of DS but if that really is how things turn out for him in his life I will be absolutely devastated. It was a stark contrast to the others and obviously CP himself who had relationships, jobs, children etc.

maybe I won’t be watching the next one ☹️.

carrie just remind yourself that everyone presents differently and that’s not necessarily how it’s going to turn out. Did they discuss what support (or lack of) these individuals received as children?

I’m quite apprehensive about watching it now. I guess it’s very educational for the average person (and probably who it’s aimed at), but for those of us with autistic or other ND children it’s close to the bone.

thanks Open. No there wasn’t anything about that. The main young man had an iPad but it certainly showed me that it’s for him at least a very slow and limited way of communicating. The others were all mid 20s and older in a centre trying still to pick out the right pecs on request. They said that many NV people didn’t speak because of ID but the assumption was always whether right or wrong that they weren’t intelligent (and in the case of the main young man lack of speech masked his personality.)

DS can be very expressive, very animated, very seeking out of people to try and interact with so as said before he was very different to a lot filmed. But it did bring home that without speech and the heavy support network that these individuals needed life was extremely hard for them and there appeared no chance of independence for them.

im not playing down her issues but in contrast the main lady filmed whilst masking, having her difficulties and behaving very differently at home could articulate her worries and feelings, was married, did stand up comedy and in the end had a child! Very very different