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

Thank you Susie ... definitely adding them to Xmas list!

Our school week ended well, he had good sessions on Thurs & Fri. Sleeping has not been great since the clock change but today he slept until nearly 6am.

Going to try a firework display tonight, last one was pre-Covid.

That's good Open

We went to the fireworks last night. It was DD's first time so I held her throughout. Both children seemed to enjoy the display but when we got back to the car I realised DS had wet himself.

This evening we are going to my cousin's wedding party. I am expecting this to be quite a brief outing ....It is on 4-12. I think 5:30- 7:30 might be doable ....Really don't fancy it. The buffet is not til 7.

Good luck dimples, hope it goes ok.

Sounds interesting Dimples, good luck!! Is that the slot you think works best? Is there dancing/ entertainment? It’s my cousins early next year, DD is a bridesmaid. I’m most looking forward to the dancing and late eve but as I know it will wear both out 🤣

Bit not but!

We actually managed 5:30 until just after 8. DS asked to wear his Elsa dress and DD who was meant to be wearing a really lovely party dress decided that it had to be skeleton pj's. Dd slept in the car on the way so was totally miserable on arrival and took a while to warm up. After that she, DS and their cousins barely left the dance floor. My Mum had a little cry at the sight of her grandchildren partying. I spent a lot of time dancing too. I can't quite believe how well it went. When I said time to leave they were perfectly behaved. They were however, rather miffed that there were no party bags!

dimples that’s wonderful, what a great night.

Fireworks were a hit here. Ds was a bit reluctant to go but we persuaded him and he loved it 💥

Well done @dimples76 and I'm glad DS enjoyed the fireworks @openupmyeagereyes
We made it out to our local display which was really impressive, DS got a light up toy so he was happy, and he enjoyed the fireworks which surprised me. He's had a tricky week at school apparently so it was great to see him happy.

We went too, DS has no issue with things like that so I knew that element would be ok but it was rammed! Not sure if it’s a sign of age or what but I’m not a fan of places that are just too busy (restaurants, hotels, bars, venues.) we struggled to get a drink or anything to eat which had been the plan so I was quite relieved to get home tbh for no reason related to DS!!

Uno, I’m interested to know when school say DS has had a tricky week whether that impacts on you or bothers you? I don’t mean if there’s a reason you know, for example if DS has a cold I’d fully expect school to tell me he hadn’t been at his best. We seem to be in the habit (DH would say I do!) of hanging on every word from school good or bad, it completely dictates my mood, views on DS, thoughts on his prospects and progression, views on school etc. This is of course exacerbated by the fact that feedback is constant. Just wondered if you manage to let it wash over you better than what we do. You don’t sound overly worried or like it brings you down, although obviously that’s hard to know just on a thread like this.

Hi everyone - glad some of you enjoyed fireworks! It is one of the traditions I miss most about the UK. Halloween and fireworks are not really a thing here - I'm fine (in fact happier!) without Halloween but there's something about bonfire night !

@dimples76 great the wedding went well. Sounds like you planned well knowing which slot would work best. Weddings are something I truly dread with DD. Only do family ones but still have a few to go probably - hope they get easier with age

We had an OK weekend although some really bad meltdowns. It's so distressing to watch / hear - the look of absolute panic in her face. Normally I find I'm quite hardened to it just because it's so frequent but last night I really broke down watching her like that, makes me so sad and feel like I'm failing her really.

We have been approved for some support (don't know if / what the equivalent in the UK is?) where someone comes to the house once a fortnight. We were advised to apply ages ago and sort of forgot we had. Although things are really hard, we aren't sure practically what someone can come and help with. However I understand they are pretty experienced with autism so thinking maybe things like tips on eating, etc. Eating is going so badly at the moment, she just physically turns away from pretty much anything. She's living on bread and peanut butter - she will have weetabix in the morning so I try to get as many nuts / seeds in their as possible for a bit of protein / goodness but it doesn't feel good at all. I made an apple crumble and you would have thought I was trying to feed her mud - the absolute meltdown of it.

Do / have any of you help at home and if so has it been helpful?

@carriebradshawwithlessshoes that sounds a normal reaction to the feedback I'd say. I don't have it as much because nursery feedback probably more limited than school but yeah one comment or something can really colour my whole mood / view on the future. I think I tend not to 'hear' the good bits too.

Ahna that sounds a bit like Portage. We never had it but I think plenty of people find it helpful. The meltdowns sound hard, do you know what triggers them?

@openupmyeagereyes Ah yes that would make sense, I have heard about portage on here quite a bit.

They are so hard, and daily now really. I really don't know on triggers, definitely there is one category in the evening / night that I think is linked to being frustrated about not being able to sleep, but otherwise I'm not sure. Definitely a big sensory element, and she tries to regulate herself by squeezing the soles of her feet together, bouncing, etc etc- but then at the same time she gets them whether or not she's had a super active or slower day. So just pretty unpredictable. I wonder if the feeling of needing a poo bothers her sometimes. All guesswork still, though. I find if I catch them very early sometimes can sooth her by rolling her around on an exercise ball. But most of the time just have to wait it out.

If she’s a sensory seeker, is seeking vestibular input etc. do you build it regularly into her day? That’s what a sensory ‘diet’ does. It’s specific activities, rather than general activity, that’s likely to be key in helping her physically regulate and stop her getting to the tipping point.

@carriebradshawwithlessshoes I think the main difference now is that school Talk to me and we work out solutions together. They're not parent blaming or blaming DS per se, just trying to help him manage his emotions. It does get me down a bit but I have to remember that it's not about me, it's about supporting DS and he finds demands hard. It comes in waves where he'll be fine for ages seemingly and then all the demands just mount up, so us and school need to work on how to support him. Never be worried to ask school how they are going to support. But yes, I do do a bit of an inward sigh! I talk to DS but then draw a line under it and start again with a fresh slate.

@openupmyeagereyes Yeah we do try, like running games, or plenty of playground time. It's harder to know what gets built in on nursery days though. And I guess on rainy winter days she does tend to get less.

We definitely are starting to have a decent sense of her "sensory profile" (needs a lot of vestibular and proprioceptive input) but I guess quite a vague approach to any sort of sensory diet. Maybe should think about building in more specific things every single day.

We found a wobble board and a trampoline to be great for DS who needs lots of vestibular input. Oh and one of those stretchy sensory things they can climb into and wear.

Makes sense Uno. I think you have a good grasp though of your DSs profile when it comes to demands and so on, a little like Ahna with DDs meltdowns I often find myself confused as to WHY DS will do something Monday but not Tuesday then Wednesday but then not for another week and so on. Or why his general behaviour mirrors that up/ down for no obvious reason (with him I don’t think it is demands I just think he is emotionally very up and down.) I suppose now he has made this move (to the sS) I expected more stability. That’s just a general comment as since HT there’s been no negative feedback but I would hope (realistically or not) school could now give him an appropriate outlet so that his ‘moods’ as his old school used to call them didn’t dominate what he did or didn’t do or his presentation generally.

Ahna, do you feel the meltdowns are linked to no/ poor communication at all? That she can’t make her feelings known, all that sort of stuff. What do they say, ‘all behaviour is communication.’ As discussed with Open and others on this board I’ve just had some time with DS this weekend in a relaxed environment with the communication cards and pecs. And a pile of stuff I know he wants. The deal has been that he can have what he wants but the journey there has to be the pecs or a word approximation and it’s worked really well, just giving him that control. At one point though he wanted a drink and the pecs wasn’t readily there and he threw himself on the floor, it was obvious then why.

It’s just a thought. I’m in 2 minds re the sensory stuff, as you know recommendations from OT are being fed into school and we will see the response (if any). I do feel though that sometimes it’s more about a bigger picture ie that he feels comfortable and well and just understood and not frustrated. Remind me, does she use pecs or other things? Will she use objects of reference (bring her cup for a drink etc)? The latter was recommended in the early days for DS and is the first step even if she’s not into pecs. I think you may have said she’s not there yet, can you and DH teach her (it makes 2 people in the early days), he shows her hand over hand to give you something, you quickly deliver what she’s given you? What I’ve found with many things over the years is as much as it’s a bugger to teach DS to do it, once they have got it they have got it, especially if it meets their own ends.

finally I know you said she had a meltdown when the hanen people came over. Did they offer any comments? I mean really, if it’s communication linked and/ or they deal and are experienced with autistic children (and presumably non verbal asd children whose behaviours are led by frustration and so on) you would think they could have said something constructive????!!

Uno sounds like Spanx!! 🤣. It’s that or resurrection of my juice diet as we move to festive season 🤣🤣

ahna I’d have thought things like a trampoline (indoor &/or outdoor) and a swing would give better input than something like running. And, yes, integrate it regularly throughout the day so that she’s getting that feedback. The out of sync child has fun has lots of games and activities that are grouped based on different sensory needs. Being upside down and spinning are also supposed to be good activities.

😆

I think in general we tend to make the following mistakes - and I include myself in this:

• we expect results too quickly. Real change takes time.
• we don’t stick with things - see above.
• we expect progress to be linear. It isn’t, and neither is life.
• we have good, bad, up and down days, but we don’t expect our children to. We may manage them better than our dc but that’s because we have more experience and a fully developed brain.

I’m sure there’s more. I think we set ourselves up for failure by having expectations that are too high. Social media perpetuates this.

Oh, and mumnet is the worst for this. Kids are not allowed to be kids, they are expected to be mini adults and people are scathing otherwise. I think lots of people with good, compliant children may find those children coming unstuck later in life when they can’t advocate for themselves and are just conditioned to be people pleasers. Psychologists warn against this all the time because of the consequences.