Primary school auties: summer and the new academic year - thread 7

[openupmyeagereyes]

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

Better than last night though when I fell asleep up in his room and didn't get up till 11 then couldn't sleep til 1am and had to be at the hairdressers super early this morning ha!

Magrat what is it with the most expensive toys! Ds is so particular and seems to always find things that are discontinues or extra rare. I spend a lot of time online particularly on eBay trying to find the right thing!

Hope you have a good time at the hairdresser this morning! I desperately need to get my hair cut.

Ds is so particular and seems to always find things that are discontinues or extra rare. I spend a lot of time online particularly on eBay trying to find the right thing!

We have this all the time. Ds will watch some old video on YouTube and the toy is discontinued and not available or costs a fortune. We are currently looking for a playset related to a computer game. Rrp about £40 but only available for about £140. I found one that was reasonably priced and ordered it only for the order to be cancelled. I’d already told ds so I may have to cough up for the expensive option. Should have known better!

Magrat I am terrible for falling asleep on the sofa and then often I don’t sleep as well.

Yes exactly open. I've made the mistake of buying the 'cheap' version in the past and it being the wrong thing, then shelling out for the expensive one later. I'm such a pushover!

That Promethezine is shite! Ds was up until 11 o clock last night and up at 5.30 this morning after 10mg of that stuff, for reference I’ve just read on a thread, 5mg knocks adults out, I think I need to ask CAMHS for horse tranquillisers next

Seriously though I prefer melatonin, I’ll try a few more days of the new one and then a few days of melatonin and compare them and then ring, need to try melatonin again before I ring because he’s had his adhd meds increased and that can affect sleep so need to see if he’s awake bcos of the change in sleep medication or because he’s on higher adhd meds. The dr has cancelled his melatonin and prescribed this instead so that will need swiftly reversing if so!

Fuck knows but it’s really boring….. and his adhd meds are still having zero affect

I took ds to a garden centre with my mum & my Dh this morning, knew it was a bad idea but they wanted to look at Xmas trees, drove to one in the next town and honestly I carried him back to the car and waited in it after an incident with some cactus plants and a fish pond. Cannot take my child anywhere without a disaster happening!

danni I am impressed that you can manhandle your ds back to the car. I can’t do it with ds against his will any more. I’m sorry the meds are not working, it must be so disappointing for you.

We went to a garden centre too today. Full on Christmas there which I wasn’t quite expecting yet, I thought they’d still be setting it up. Ds was a bit worried by some huge dancing animals so we didn’t stay too long. Last year he desperately wanted all manner of horrible huge ‘animatronics’ that he’d seen on Spirit Halloween videos. This year he doesn’t like them at all and is avoiding lots of Halloween stuff.

We didn’t buy any horrid Halloween props, he’s just avoiding stuff in shops!

Open he is a total embarrassment with his performance whilst I’m wrestling him in the car, one of these days I expect the police to arrest me for kidnapping. Which i would happily go with them for some peace

He shouts ‘stop punching me’ ‘help me’ all whilst he’s the one assaulting me. He kicked my car door from the inside into somebody’s car door a few months ago and damaged it in one of his rages.

He said today in the garden centre (I had his hand moving dragging him away as he was trying to put a Peter rabbit toy in his pocket and I wasn’t paying £16.99 for a little teddy) stop hurting me, you always break my fingers, my mum was like wtf ds she’s literally just holding your hand.

Ds asked me this morning to get some Halloween ‘declarations’ 😂

Hey, just catching up….

DS just been charging around like a maniac all weekend. It’s like someone says to him ok, for 30 mins just run back and forth as fast as you can in the lounge, ready steady GO!!! Anyone else get this? Accompanied by huge dive bombs on the sofa and manic jumping on the spot. Is this adhd???!!!!!! Discussed with his paediatrician but she said she would never assess before 7 snd he’s only just 6. Also said he would have to act like this ALL the time in ALL settings which I can’t swear to.

Anyhow first night out since forever on Fri in the city with work friends. Had lovely night. Got home 11.30, DS still up! I said to DH wtf?? DH then admits he’s been in a and e 4 hours after aforementioned manic behaviour resulted in DS dive bombing into the radiator and slitting his head open. Fortunately on the top so not a total mess but god, why??? Can’t say he’s sensory overload as per school as he’s at home!!!

Otherwise all fine…..

Fingers crossed for better sleep tonight danni!!

Re Xmas toys, I honestly wish DS would express any interest in any toy or activity that required him to stay still. I’d remortgage, he could have it!!! Apparently the Dr said to DH in the hospital, is he always like this? Don’t you hate it when people say stuff like that? If you say yes it’s not like they then do anything to help is it, it just makes you feel worse about your child.

What is it with Halloween? I don’t even remember it when I was a kid but it’s second Xmas for DD so we have the house decoration tat. Visited the garden centre too which was uneventful (thank god). Danni, I can and do manhandle fairly often too… DS wearing today an age 3 to 4 jumper so is still quite small. Irony is he is the most angelic looking kid, people tell me so when we are out, he looks like a young Prince George yet he’s an absolute devil when he wants to be….

One more week before half term. Not sure if that’s good or not. We have a family of consultant anaesthetists and I’m always asking can they provide a suitable sedation, they are like, yeah, course we could… we would get fired but it’s very doable. Danni I’ll send some your way 🤣🤣

@carriebradshawwithlessshoes DS has a need for constant movement we think its related to his proprioception issues, things we found help are weighted blanket and kindle for calming, and trampoline or wobble board for alternative ways to get the same input. Also I try not to sweat it if he sprawls over sofa etc. He spins a lot too but less so if he's had a good trampoline bounce! Running races we gave too, van you race him up and down the garden? We go to woodland Trust outdoor spaces a lot too and have running races with DS which he loves and it seems to help with the more inappropriate need for movement (although he still always fidgets with everything and DH does too)! 9.45 end to bedtime tonight!

Can you not van you!

Thanks Magrat, yes he does enjoy those activities too (don’t have a wobble board but using other things eg gym ball.)

Do you find it’s linked at all to external things, in particular what he’s eaten? Or not? School love the ‘oh it’s because he’s anxious here and sensory overload’ line as part of their squeezing him out plan but actually, I think I’ve been sucked into that a bit and not sure I agree. Ironically Saturday (garden centre day, loads of sensory exposure, noise, crowds, Halloween tat etc) he was absolutely fine. I was almost thinking a corner had been turned. Then Sunday at home in peace and quiet he was manic. I can’t link the behaviour with what makes him worse or better.

Having a morning here, ds refusing to get ready for school. Shouting and demanding his video game. He’s just locked himself in the downstairs bathroom (with a chair) so goodness knows what he’ll get up to. There’s nothing overtly harmful so I just let him get on with it, frankly.

He’s stopped eating peanut butter on toast since Friday following being sick. That constituted 50% of his diet so I’m not sure what we’re going to do. Normally he’d have two pieces of it and cereal for breakfast, now he’s just having the cereal

He usually has one bit when he gets up early doors, the rest at ‘normal’ breakfast time.

Is he out yet Open? Re the food I think it’s really really common to not want to eat what you last ate when you vomit, DD has been exactly the same (off the ribena), but usually they go back on it after a short while. I understand it’s stressful if he’s a limited diet. At least he’s had cereal? Will he have toast with jam/ butter/ other spread??

I seriously need someone to tell me to get a grip this morning I’m sitting here crying over I’m sure you will say nothing after school run. Please tell me I’m an idiot. Walked into playground with kids, both had been really good. DSs class teacher there plus the one from last year. DSs toileting at school been loads better last few weeks, I’ve been really pleased with him. Still odd accident but overall much improved.

Anyway I was quite chipper this morning and explained to DSs teacher about his glued up head, old teacher from last year was smiling nicely, DS was smiling. DSs teacher then said oh, we were going to have a word with you! I smiled and said oh, what? Thought he was going to say how well DS had been doing with something, DSs old teacher looked intrigued too. DSs teacher just looked and went ‘we need more bags and wipes’. Old teacher looked a bit embarrassed. I said ok, but he’s been much better with the toilet, hasn’t he? Put my head down and hurried off.

Bags and wipes that’s all they have to say. Not even oh, he’s been doing so well with the toilet but would be able to drop in some bags/ wipes when you get a sec? Why do I torment myself constantly with the fact that may actually have anything positive to say or think about him.

Tell me to get a grip… this is nothing, why am I crying????

He did go in, after I let him have 15 minutes on his game if he got ready. We were about 20 minutes late in the end. I feel like if I hadn't allowed this we'd still be locked in a battle though it's not exactly ideal. Sigh.

He has completely dropped foods when younger after he's been sick but this has always been such a staple for him, and relatively nutritious, that it's a massive blow if he won't eat it again. He eats so few foods now. We can only hope that hunger wins over in the end. Not that I'm planning on starving him but I think we will struggle to fill the gap with other foods.

carrie I think you're justified in being upset, it's not hard to find something nice to say is it. They are lacking in empathy if they don't think that this is not very difficult for you, and ds. Maybe give some feedback via the Senco? That's perhaps what I'd do but I'm not certain

Carrie, that’s depressingly rubbish of the school.

Oh @openupmyeagereyes glad he went in in the end but hugs re the drama!
@carriebradshawwithlessshoes did they say that in front of your DS? If so, I'd raise a complaint with governors, as that sort of thing would definitely destroy my DS' confidence and make him more likely to revert to challenging behaviour as it I so damaging for self esteem etc. Horrible person! Just because children don't talk, doesn't mean they don't understand.
Sensory overload definitely triggers my DS' manic behaviour, but his need to move is more about him just being him tbh, so he needs the input to regulate himself.

Thank you for the support and yes he did Magrat. This is just how they see him. It makes me so sad though as after the head cutting incident on Friday I got out DSs little communication cards and asked him about the incident. He told me what exactly had happened, where he had hurt, told me that daddy had taken him to hospital, I wasn’t there and his sister had stayed at home with grandparents (all true). So he understands every word.

I know that everything involving our children is about them, foremost, not us, but I can’t tell you enough what that place/ those people do to my own emotional health and sanity.

@carriebradshawwithlessshoes I understand, I'm still recovering from anxiety with it all.

Did you get any professional help Magrat? (Or anyone??). Has anything helped you?

Disaster averted here as ds started eating his toast again when he got back from school yesterday lunchtime. I am so relieved.

Another tantrum this morning about his game (they are daily really) but shorter today and he was at school on time. The notes from yesterday show that he still is not engaging in much work in the classroom and talks about wanting to be at home. This is after six weeks of a part time timetable. I really don't know whether it's just the wrong environment or that he just doesn't want to learn or see any value in school work. At home he's so resistant too. All he wants to do is play. I'm trying really hard not to make his behaviour now, at 7, mean something that it doesn't and extrapolate this to how he will be at 10 or older. But maybe some kids just don't want to learn. He's already missed so much.

I'm just trying to read a lot to him, I've spent an absolute fortune on books over the last couple of months. We read and reread and so I can get lots of ideas in that way even if I can't more formally. Hopefully when he's ready to engage with learning a bit more he'll have something to draw from.