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

@openupmyeagereyes my DS was like that about moving schools, very worried, we had some transition visits where his 121 went with him and even she said he was like a different child in the right setting. They did a great social story too and the teacher put pictures of the staff and space on the online system just before they started. Their bespoke offering for DS, especially how they adapt quickly to suit his needs, has impressed DH and I so much. DS now has self esteem again after his frankly awful treatment by mainstream staff.
@livpotter sorry your two are having issues with other kids. It's hard isn't it. I never thought DS would have friends and now he does but there's the friendship dynamics to worry about!
@danni0509 what a nightmare for you all! It's a trial and error process though isn't it. Good luck for your phonecall with camhs.
@carriebradshawwithlessshoes omg your DS' school must have gone to the same behaviour management training as our old school!! Hmm what's the best way to freak out a small young autistic child who is already scared and make the behaviour worse?? Yes let's dress up as scary hazmat people qnd really freak him out! It's awful, it's putting adults and their needs before your DS. Have you looked at other schools yet? Honestly, i cannot recommend it enough. Our new head sent a video to everyone yesterday on how they deal with challenging behaviours and deescalation techniques and it was so so so refreshing to see an adult in education separating the behaviours from the child, encouraging pro social behaviours because the child wants to display that behaviour. I'd recommend zones of regulation as well as a model to help the child label emotions and see patterns without apportioning blame.
I've called in sick today as my post cold cough has got a lot worse so getting a pcr. Feel awful as I'm still in probation but I think they'd prefer that than me going into school as a potential super spreader!! I'm treating myself to a Friends rewatch from the start. Wow Matt Le Blanc is so young!

Magrat, echp finalised today so we are consulting as of today. That’s all lovely to hear about your DS.

I’ve a post cold cough too! Enjoy the viewing… my fall back is always the SATC DVD’s (well of course if is, you know I’m Carrie Bradshaw don’t you) 🤫🤣

Woohoo about the ehcp @carriebradshawwithlessshoes!

liv he hasn’t seen it yet because it’s still being built, none of us have. We’ll visit in January and hopefully he will see it’s ok. There is one other boy from another year in his school moving there too but will obviously be in a different class. The TA was talking about getting them together.

Light sorry the dc are having problems with other children. It’s heartbreaking isn’t it. Hopefully the staff can deal with it effectively.

carrie sorry the negativity continues and that it’s having an impact on your own health. I hope you can find some ways to feel better and once the EHCP is approved to get the ball rolling on a new school.

danni I’m sorry you’re getting grief too. I hope you can get meds sorted quickly.

Ds refused to go in today because his favoured TA was going to be out this morning (they did tell us in advance about this). He was quite agitated and as I didn’t want him getting aggressive with the other TA I just brought him home. I think the TA is sad that he doesn’t seem to like her anymore, she’s worked with him in each year he’s been there at least for part of the time.

He told me yesterday that someone told him he should go back to KS1. He wouldn’t tell me who but it was male so most likely a boy as there’s only one male teacher and it’s unlikely to be him. It made me sad, I’m sure it’s comments like that that contribute to him not wanting to go in and thinking he’s ‘not clever’.

Magrat I wish we could start transition visits but we’ll have to wait. Only 3 weeks left of school. I hope PCR is negative.

carrie glad EHCP is done. Have you named a specific school yet?

Thanks @openupmyeagereyes. I'm sure once you see the school in Jan, things will be fine. How exciting that its all brand new, sounds great.
Only 3 more weeks left until Xmas hols and already DS is doing a Countdown until Xmas! Going to get the matching pyjamas that I shamelessly bought out on Wednesday and all the Xmas themed books etc. Might try to convince DH to put the outside lights up too!

Camhs said the dr isn’t back until Tuesday so she will pass a message on Tuesday morning (she’s wrote it down for him) I said I’ll ring back Tuesday then. I don’t want him on something that isn’t working any longer than he has to be on it.

I’m not medicating him at all this weekend to see how his behaviour goes. Hopefully I’ll get a weekend off being assaulted by a 7 year old 15/20 times a day. Just want to see if these ferocious mood swings lessen a little.

carrie we'll start putting the decorations up next week too. I'll put a few bits out mid-week and we'll get the tree at the weekend. Ds loves Christmas and the decorations so we're very lucky. The years he was 2 and 3 he didn't really want to open presents and we had to do most of them but after that he never looked back. We also have elves that will need to 'wake up' on the 1st (we weren't allowed to put them away). I blame his y2 teacher for this as he had one in the classroom and ds insisted.

Ds had a tantrum this morning about doing a bit of work before he was allowed television at his usual pick up time. Thankfully we got it done and he admitted that it was ok and didn't really warrant the level of fuss that it produced. Thank goodness it's Friday.

Ds also loves Christmas. But this year doesn’t seem as fussed as usual. Like we are driving past houses with trees up and he’s not bothered (Maybe because we don’t have our tree or anything up yet) he keeps writing Santa letters when he’s drawing and he wrote bring me ps9 the other day I said ds they only go up to ps5 and he had a tantrum. I’ll forward your complaint onto Sony ds but there’s not much I can do about that I’m afraid. Lol

I usually put our decorations up 1st December and take down on the 31st so a week or so I’ll sort mine out.

last year is the first year ds didn’t destroy my tree, he didn’t even remove 1 bauble, he was as good as gold around it, really suprised me. This year I’m not so sure

I’ve just had an interesting phone call!

Just getting petrol and I had 3 missed calls off a private number. Pulled into Tesco car park as I’d been left a voice message, as i pulled in it rang again, answered and it was the camhs consultant, he works from home on a Friday and had picked up the email that he was sent this morning from camhs office after I’d rang.

Ds was having a right meltdown in the back of the car bcos i was using my phone but I got out had to stand few feet away and ignore him.

Basically he’s swapped ds back to the old stuff 3 x a day, need to return old medication Monday and pick a new box up and use the old tabs in my cupboard from the morning.

He’s just slagged ds school off to death, he said xxxxxxx (ds school) is notorious ‘exact word he used’ for doing this, complaining every time a child is difficult, reducing hours, etc he said he’s had a few children before and their parents have complained to him and it has been ds school.. he said to tell them, that he’s told me to tell them, that he won’t increase ds medication again until he’s attending 6 hours a day. He said to tell them from him there is no good reason he shouldn’t be attending full time hours and their excuses as to why he can’t stay all day are RUBBISH. He was ranting away, quite literally.

He said he understands when a mainstream school can’t keep a child for a full day as although they receiving funding they don’t have the same experience as a special school but for a special school to be doing it especially after 7 months at the school they have no excuses he sees which are fit.

He said ds is now also medicated so they need to tell him why they are still only having him 3.5 hours and still complaining.

He then went on a rant about another special school he’s visited recently because one of his young people he sees have been very violent at school and he wanted to work with the school to discover what was happening, so he went in to observe, he said there answer was also to increase medication but in his view when he went in to observe, the problem was the school and not the child needing more medication. He said schools are too quick to medicate problems away which doesn’t work.

He said there is no benefit to ds having his medication increased from 3 x 5mg a day unless he’s using that time he is medicated for education or to learn behavioural strategies from school. So until his school increase his hours to full time he won’t increase.

So as I thought and as I’ve been saying, ds school are just total shites.

danni great of him to call you. I would ask if he’s willing to put that in writing for you.

How is ds’ sleep?

Carrie great the EHCP has been approved. Sorry ds's school are behaving so appallingly!!

Danni he sounds like a great consultant! Glad you've got someone on your side.

Open sorry ds didn't get in today. My ds also does that with people, he completely blanks the old person if he's moved on to the new one.

Magrat putting up the decorations sounds fun. Ds also loves Christmas and particularly the tree. We're not going to be able to put up anything till we're in the new house at the end of term.
Hope you feel better soon and the PCR is negative.

Also ds school told me the Hydropool is broken as it’s not been heating up, told me this back in September, I’ve still been sending ds swim gear every Thursday as I don’t know which week they’ll be back at it, guess what, schools newsletter today all the children have been swimming all week, guess what, ds swim gear came back dry yesterday.

He’s been swimming once in 7 months! It’s supposed to be a weekly arrangement.

Really fucking annoys me.

Open, ds has been going to sleep about 9.30pm and waking about 5am this week. I’m not sure that sleep medication is that great tbh as he has it at 7pm.. x

liv aren't they funny? Ds is also a bit out-of-sight-out-of-mind too. I'm hoping this will be the case after the Christmas holiday.

danni outrageous that they are excluding ds from swimming.

Ds sleeps roughly 8:30-5 on an average night. He slept until 5:20 this morning which was nice though when I checked the clock I thought it was the middle of the night still as it was so dark.

Ds didn’t go to sleep until nearly 9:30 and awake since about 2 ffs. He’s not tired anymore apparently.

Sorry open. Ds was up at 5, although I know it’s not as early as 2am. Does it affect his mood later in the day? When he’s tired.

Ugh sorry open, I hate nights like that.

I’m sure he’ll be grumpy and whingy later. A low demand day is in order.

Can I beat you all? DS up 12 til 6.. 😡😡.

Weather here terrible tho, really loud gale force wind and sleet. I did think the house was going to cave in in the night.

DS also v constipated at the mo. Is this an issue for anyone else?? (Their DC not personally 🤣🤣???)

Ouch carrie, that's tough

We are lucky, ds has always been regular and he goes about once a day. Is he on movicol or anything?

Carrie similar to ds last Saturday night. Up until 12.45am then slept a few hours.

Ds is back on the old stuff as of this morning. He’s actually been ok today, his mood swings aren’t present (thank god, he’s been having awful ones) I have probably spoke too soon and all that. But he’s been up since 5 and I haven’t wanted to pack my bags and leg it so far today

Ds is ok atm. He goes usually once every other day (only in a nappy, he won’t go on the toilet for number 2) he has had to have periods on laxido sachets, he gets that overflow constipation from withholding, but actually I think, well I know, that was because he was withholding because I was making him use the toilet, he used to cry for a nappy to Pooh and I wouldn’t let him (because I felt like it’s 1 step forward 10 steps back, he’d been using the toilet to Pooh for ages then suddenly wouldn’t, so I dug my heels in and said no ds use the toilet, downloaded Pooh goes to Pooland etc but he just held it in, made himself constipated and that overflow started again)

I felt sorry for him withholding and he was getting stomach ache a lot so I just let him go in a nappy again, he’s been doing that a few months now and he doesn’t have overflow or stomach ache anymore.

No idea what I’ll do in the future but for now, the nappy solution is the lesser of two evils.

danni does he tell you when he needs to go? I think it’s the right approach, you don’t want that battle every day and the less stress for him the better too.

We had a better night thankfully.

We didn’t. DS up at 1.40. What I don’t get is he was sleeping til 8am 2 weeks ago. Is such inconsistency normal???