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

I honestly can't imagine him being "at school" all day it blows my mind.

This is how I feel and ds is 9! 😂

He started managing two hours after 4 months and I would panic thinking I'd forgotten him somewhere, I couldn't get used to not having him with me. Even by the end of the year I hadn't accepted it! Sounds crazy to say

DS is back on Tuesday - into Upper Juniors now ...wish that I had managed to get him moved to special school. DD is super excited about starting school - hope that this enthusiasm endures. My sister's autistic twins start secondary school next week, my nephew's anxiety is sky high. They have an extra transitional visit for SEN pupils on Friday

Hope it goes ok with all the returns to school. DD didn’t have a long summer break so less upheaval I suppose. @bryceQ we are in Holland so I guess it’s a bit different, but her school is for SEN (although she started there before the actual diagnosis) and she goes 5 days from 9-3. It goes pretty ok when she’s there but in terms of learning or anything like that it feels absolutely miles away from MS school.

We had such a bad night although overall they have improved slightly. She is now staying up with us until 11 every night and mostly it seems to help her go longer, with mahbe 2 awful nights a week rather than the majority. It is a bit relentless having no evening off though and DH and I are clashing over stupid stuff atm and I think that’s partly why - I don’t feel we have any window to talk through stuff like that without DD being around and needing supervising. Feels like such a cliche that it starts to wear down the relationship but I don’t know how to avoid that really - any tips from anyone?

Ahna no real advice I’m afraid, just try to do little things through the day to show affection.

Ds has been a little more reactive the last few days. I’m not sure if it’s anxiety about school starting to kick in.

Ahna DS is up too with us but it’s preferable to a crap nights sleep. What does she do? Will she sit or is she on the move?

re you and DH I know you don’t have a lot of family support so I guess the key time is if you can flex work or have time in the week for lunch or whatever when the girls are at school/ nursery. Can mil and FIL manage a few hours on an eve so you could have an early meal out? Even if at yours if easier (even if it means they stay over if they are a distance away.)???

Have many of you got non verbal little ones?

Thanks @openupmyeagereyes @carriebradshawwithlessshoes yeah could def try to do more working from home lunches etc.. I tend to prioritise exercise if I get a window bc it helps my mental health but should try and find time for each other. MIL would come once in a while but her partner doesn’t join (which we are fine with) which makes us feel a bit bad if it eats into their evenings / weekends etc.. And she’s away for 6 weeks now! Hopeiflly when back

@carriebradshawwithlessshoes in the evenings she’s very busy, she likes to have screen on in background but doesn’t sit and watch, running, jumping, climbing - often happy with usually a meltdown at some point. Have to keep an eye on things in her mouth at the moment that’s probably the biggest thing to watch for. And I feel bad not trying to engage with her when she’s there - sometimes I need to finish work stuff but never feel great about that. But yeah 100% better than broken nights even if I miss an adult evening.

@bryceQ a few I think. My DD is pretty much non verbal although babbles a ton and sometimes eg counts or says recognisable words, just totally not to communicate. She used to say more before having a regression when she was 1-2yo. Yours also not speaking?

bryceQ mine is verbal (9yo). There are a couple of posters with nv dc and probably a few more that come and go. Another couple of posters have dc who were slower to gain language or who had regressions but are verbal now.

Thanks everyone my son is 4 and a half, no words. He makes lovely musical sounds but it's for his pleasure rather than communication I suspect.

Bryce does he start school this year? Is he going to ms or specialist?

He is going to the reception attached to the preschool so it's the same space and they are very flexible with letting him roam across. He will do about 2-3 hours. The specialist school we want him to go to is from year 1. But this current place is good for building his confidence. He mostly just plays with water outside all day.

Is the plan to gradually increase his time or not yet? Does he have an EHCP?

Yes he has an ehcp we didn't send him into a setting until he had it. I tried to increase from Christmas last year but he couldn't manage more than 2.5 hours, he would start to stress eat mud. I never wanted it to become a horrible experience for him. It's so tricky. The thing is... It's never going to be a setting he enjoys as he likes being in quiet places outdoors. I'll just see how this year goes and not have big expectations. His wellbeing and happiness is most important for me.

Mine is part time too. He moved to a specialist school but is still struggling since covid. It’s a long road for us.

@bryceQ DS is non verbal and has just turned 8.

Schools are tricky. I recall a poster saying SSs were not quiet or gentle places which wasn’t in line with her child’s presentation and since DS started last Sep I would agree with that. In fact DSs reports says for months that he was superglued to staff and not comfortable in the environment at all. I still don’t think he likes it (neither do I) but he tolerates it.

It’s interesting that school can identify that DS has had enough after that period of time given that he can’t say so. Eating mud and stuff and behaviour fluctuations seem par for the course in SEN schools, certainly at DSs I don’t think they would be flagging those things as being a sign he needed to come home. Is the autism school you mention for a range of asd children or the HF ones only?

Have you tried other communication methods? Pecs? Signs?

The classes at my ds’ specialist autism school are not quiet either. There are fewer children, obviously, but they are more boisterous.

I always think there’s an irony that one reason Dc move to SS from MS is they need more breathing space, quiet, etc and yet although yes class numbers are smaller often the behaviours are far more I’ll use Opens word ‘boisterous.’

DH actually got thumped on the head by a teenage child one day on drop off. Said it really hurt. But what do you do?! 🙄

Well it’s one of the reasons ds is not yet full time.

Not sure about the return to school either. The only saving grace is I can get some work done. I’ve bullshitted my way through the last 6 weeks with clients, if it was much longer I’d be sacked and rightly so.

had a bizarre email today that I don’t understand… does anyone? From the Council saying ‘further to DS recent AR we need to amend his EHCP, here it is in draft please comment within 15 days.’ Well there hasn’t been an AR that I’m aware of, shouldn’t this involve us? Obviously given the 6 week break nothing has happened recently. Last year DH I agreed some revisions in a meeting with the head, OT and SALT which I understood was the AR meeting. Anyone understand???!

I don’t mean they’re always aggressive, though sometimes/often they are, but they’re louder, more active etc.

carrie given delays this is probably the draft from that meeting. Does it have a date of the meeting on the document?

We haven’t seen last years yet and we had another in June.

Open yes I get that re FT.

The meeting in Oct 2022? The head was pushing us to sign off on that which we did just before Xmas 2022 so I thought that was then finalised and put to bed?

re behaviours it’s hard to explain, a lot of the kids from my playground observations just behave very differently… very loud, stimmy, head banging, screeching type thing. Think DS was/ is quite alarmed and I am still not convinced didn’t lead in part to some of the screaming he has done himself latterly this year (which has now stopped thankfully.) Lots of meltdowns. DS whilst obv getting upset has never had a full on meltdown like I’ve seen there. Maybe we are lucky (in that respect.) I find it quite hard/ upsetting to watch (maybe because DS doesn’t present like that) so I can imagine how it can be upsetting or unsettling for DS.