Thread 12. Autism and any other additional needs.

[danni0509]

Thread 12.

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!

Just typing quick as ds needs to get ready for bed. I’ll link the previous threads later.

x

We have survived 3 days

Day 1 went well
Day 2 ended up in sobbing tears with sweat dripping down his face 🥴
Day 3 had a call after an hour that he couldn't cope and was attacking staff

He came home, stripped off, had an ice lolly, watched frozen and was happy as Larry!

All good here (let's not dwell on DD wailing most of the way to school this morning and DS stepping out onto the road as a car was coming around the corner). DS received a head teacher's award for hard work! We are also 4 weeks and counting since he had a toileting accident. It's the best he's been since the Summer of 2018. I was sure that it would all go wrong this week. DD seems to really enjoy school

danni excellent ds has coped so well and congrats that your PA stint is over. Treat yourself to a mocktail or something. How has it been having time to yourself?

BryceQ sometimes it takes a while to get back into the swing of it. Hopefully next week is easier.

dimples well done to your ds too. Excellent progress.

How is everyone else doing?

Oh dimples, so glad dd is enjoying school.

Great to hear some positive back to school experiences and hope for the more mixed that it settles into next week.

enjoying the end of summer sun here. Was in the sea for nearly two hours w DD today, she was just grinning the whole time, loved it. meltdown this morning is nearly forgotten!

have my mother here for 2 nights now, she’s basically ignored DD1 the whole time, like she doesn’t know how to be around her. At least try…?! Whatever, have long given up hope on that.

went to a lunch talk yesterday by a woman who has authored some books about autism, has an autistic son and her husband is head of the concert orchestra in NL and they have sort of music therapy foundation and are quite well known. Talk was interesting but every child so different I never like the tone of ‘this is the right approach’. Got a couple of numbers tho so maybe some coffees with other mums (I live in hope of making a few friends here ha)

hope everyone getting some sun and rest.

Ahna the lunch talk sounds like it’s going to yield some good results. I hope you can make some new friends. Sorry that your mum is ignoring dd1, it must be so hurtful.

DS started school this week. He's had a good week and seems happy. Hope it continues. I feel a bit better about things than I thought I would but it's still felt very intense this week. Of course the heat hasn't helped.

I’m prob one of the greatest advocates of music on here, (I’m v musical, DD and DH are not.) DS loves music and often sits on my knee when I’m playing and so I was excited when he started SS and they sent home a form to say could he have music therapy, not that I professed to know what it entailed . I of course said yes! Long story short the form came home 6 months later saying he wouldn’t engage, so for us in ss ‘music therapy’ was useless, as with many things, in terms of what they did. BUT I still think music is a huge thing for our children and taps in certainly to DS in a way other things don’t, we try and play at the piano together and he loves it, so Ahna, see what this brings. Do you or DH play?

school oK but so hot this week!!

Sitting here messaging you all and silently seething! AIBU? So we live in a nice area, houses around tho. Most people older, nice, chatty, so fine. But over our hedge family, quite well off, kids early teens. Relatively often they have ‘garden parties.’ by this I mean gatherings in the garden starting 9 ish, maybe been inside before but move outside then. This progresses to music (loud), the woman in particular gets ‘screechy’ / obv drunk laughing and screaming and swearing, guests do too, the DC then start up football, it wraps up on these occasions about 3am??

so is this unreasonable? What would you do? The thing is with ds if he wakes in a couple of hours he’s up the night. Irrespective of that I can literally hear every word (with my bedroom window shut.) last time we had a word at 2am, they ignored and continued. Currently 22.30 and sounding like Glastonbury….

Is there a reas time to be quiet in your garden (not not sit in it, just not be ‘audible’ to others?????!)

Definitely not being unreasonable Carrie - if that was a rare event (like once a year) I would think okay but any more frequently than that no way.

DS used to go to music therapy. I was never quite clear what the objectives were but I wasn't too concerned as he loved it. He was in choir at school but dropped out. I used to be in a choir before DS came along and I miss it but even if I could find childcare the one I used to go to doesn't exist any more. When I sing DS often tells me to stop but I also see him watching me with a smile or joining in with gusto. DD loves singing but it's pretty painful on the ears at the moment!

Ds awake since 12:15 ffs

Trying to force him to stay in bed didn’t work. Trying to get him back up to bed has resulted in angry shouting from us both. I have threatened and said I will punish him by taking away his video games tomorrow, not because he’s awake but because he refuses to go back to bed. I’m bloody fed up.

I’m sure I will regret the threats tomorrow but I’m very frustrated by his refusal to do as he’s told and the fact that he sees nothing wrong with getting up at this time.

Oh @openupmyeagereyes that’s such a crap night. And yeah it’s impossible sometimes to not get angry at night.

yes @carriebradshawwithlessshoes she did have music therapy briefly a year or so ago but don’t think she clicked w the woman, she does love music tho. We have a piano at home that she’s def interested in. And she’s always sort of singing. So we will explore again!

you are totally not BU w the neighbours - I get annoyed if it’s like 10pm (I know that is BU) - anything after midnight is rude esp as dimples said when it’s not a once a year thing. I don’t even think the fact DS could be up long if woken needs to be a reason - it’s just normal good neighbour behaviour

Phew terrible night for us
He didn't go to sleep until 11pm then awake at 2pm until 6:45am and just back off. It's too hot. Bring on the cooler weather please!!

Thankfully ds went back to bed at 2:00 and was asleep about 2:35, up at 5:05 though, of course!

I didn’t do my best. I genuinely don’t know how to gentle parent that situation at 1am because if he can’t do what he wants he just starts shouting and he really would just stay up all night given the option. Doing nothing seems like giving that permission. I’m all ears if anyone has any advice.

I don’t know if it was the heat, he usually does better than I expect when it’s hot. At least it’s going to break next week.

Sorry you’ve had a rubbish night BryceQ

carrie I hope your neighbours stopped at a reasonable hour. I think midnight at weekends should be the limit, only later if it’s a special occasion (rare). Sound really travels at night when it’s quiet. We don’t have this issue, thankfully. I think on our street we’re the problem - last night a prime example.

I don’t play the piano, I wish I did. I’ve sometimes thought about getting one and learning. My favourite instrument is the cello 🥰

Most of my friends’ NT kids did/do piano lessons. I always wanted mine to when I had them but there you go. Ds had music lessons with a proper music teacher in ms and sometimes took part but often didn’t. They have a pt music teacher at his SS but I’ve no idea when/if his class see him.

Honestly I don't care what sleep experts say I just give him his ipad on lowest light setting when we have a bad night. He tries so hard to sleep but he just can't. I think if i desperately couldn't sleep and someone kept shouting at me to sleep and not letting me read my book I would be miserable .

Bryce ds doesn’t often try hard to get back to sleep, that’s what I struggle with, I know I can’t force him to actually go back to sleep. If he stayed in bed and read quietly I would be quite different.

• it would be different

Sleep refusal is so hard. DS just seems to need less sleep than others so he's now 9 hours most nights but he's happy with that. He woke up early yesterday so we had a fractious day (also stomach bugs all round and I had a weird cold) but fell asleep earlier that usual, so he was up early again today but DH and I went straight to bed last night and got some sleep too. We started this thing where if DS didn't come down after bedtime and stayed in his own bed each night, he'd get a present on a Saturday. This was years ago but he still expects it! This week was yet another exploding kittens game, which at least are fun to play!
Work is rubbish and I feel like no one appreciates me. Not looking forward to tomorrow.

Elizabeth ds typically gets 8-8.5 hours and I’ve made my peace with that. He’s always slept less than typical. If he’s up at 4:20 I remind him that he needs to try and stay in his room until 5 but I don’t make a big deal out of it. Nights like last night are different, he cannot be up for the day at 12:15 am, but he has been sometimes, likewise 1, 2, 3 ish. Sometimes he will stay in bed for a while, other times he just gets straight up and refuses to listen. I worry that giving him an iPad in bed would be the start of a very slippery slope. I regret almost every other screen decision we’ve made so far.

Dh and I will go to bed early tonight and hope for a better night. I am grateful that dh shared the load, though he’s away for 3 nights next week.

And sorry work is rubbish and you’ve been poorly. Awful in this heat.

I agree with you @openupmyeagereyes that's way too early and if your DS is anything like mine, once you agree to the screen at that time once, he'll expect it every time. I think you're totally right to stand firm with trying to get back to sleep. Our cut off tries to be 6am, so even if DS comes into our room before then, we try not to give him a screen until 6am. He's had lots of funny dreams lately, bless him, stuff that freaks him out (he learned about computers recently and backing up, then dreamt that an app had deleted everything on the Internet...)
Would a neutral social story about getting enough sleep and being in bed at night time help him, do you think?