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

They had tried a weighted vest on ds but he hated it and won’t let them put it on him so they don’t bother with that.

Other things I remembered, they have a swing outdoors and she wants him to use that at any opportunity and ds school work must have a sensory element built into everything.

She said he needs input at all times, she described him as having ‘definite dysfunction’ in 7 areas.

‘The more he moves the more he learns’ was her exact phrase.

Another 3:40 start today. Bloody elves!

Oh dear open sorry about the early morning, I don’t do elf on the shelf fortunately. I didn’t want to give ds any extra ideas on misbehaviour.

We did an Xmas eve box for a couple of years with pyjamas, sweets, new toothbrush, Xmas colouring books, reindeer food, bath bombs etc etc and ds both years tipped it upside down got the sweets and legged it. After the second time I figured I wouldn’t bother again as he doesn’t understand so doesn’t really appreciate it, I don’t bother now. Just get him happy meal and some sweets on Xmas eve.

Ds advent calendar last year he opened each day on the day and was really good and listened to me when I said just this one today. Yesterday I had 10 doors straight off, he had it on the kitchen floor laid on top of it screaming so I couldn’t get it off him 🤦🏻‍♀️ 😂

I don’t think my tree will be safe from him this year...

danni I didn't want to either, but ds' year 1 teacher got one for the classroom and then ds saw them in Tesco and wanted one so this is now our third year. I don't mind the elf stuff but I do object to the early mornings, it was the same last December too. I keep telling him they will have to go back to sleep if it continues. He didn't go to sleep until about 9:05 either last night.

He refused to get out of the car at school

Sorry to hear that open… when is he at the new school, is it Jan??

Gosh I find all this movement/ sensory stuff complex… as in, I think most of us acknowledge our children need to move a lot/ have attention issues. Did I say we had booked a private adhd assessment for today? So DH and I did it, DS made a brief appearance (it was one Skype) but mainly it was a questionnaire for us. Anyway lo and behold shock horror he got a diagnosis of ADHD, they will prescribe meds (same as you have talked about Danni). But first need him to have an ecg (because I had a heart defect that was corrected a few years back and they want to make sure it’s not passed to him.)

I’m not sure how I feel!! I’ve very easily got to this stage and very easily got him medicated potentially, Dannis stories do not fill me with confidence. I do wonder if it’s a grey area tho, whether a lot of our children present similar and I’ve been too enthused about getting a diagnosis???!?! Which I can’t now retract. Though I can agree to no meds. Have I fucked up??!!

I did take a look again at his revised EHCP and the following are all comments from school… (will hv to paraphrase)…

DS has not yet learned how to focus on the teacher whether in classroom or a small group

Staff find it VERY difficult to get DS to sit down

DS will often seek to do things of own choice which often means he acts impulsively such as running down a corridor into another classroom

DS will not engage with any work at school

So is that classic adhd or just he needs to bounce on a trampoline more??!!!! I suppose tho there’s no harm in trying meds??

Can I ask a qu… I know Danni will probably say ‘no’ to this but do your children know how to act socially when they are out?? It’s easier to give an example… last week we were in Sainsbury’s and I was packing at the till point, DD and DS were both with me. Suddenly DS shot off behind me, just in time I realised he had seen on the conveyor belt an apple belonging to the lady behind us, DS likes apples so he just went to grab it and take a bite. He seemed to have no understanding that you don’t do that, it’s not ours, it’s not paid for, anything!! In the same way he would think nothing of in a cafe helping himself to something off someone’s plate he liked. Despite my telling him NO a million times over!!

Sorry for the ramble…..

Ds wouldn’t have his smoothie at school, they said they tried and he wouldn’t drink it. He’s come home said he’s never drinking a drink at school ever again.

He’s had his smoothie here no problem (had to give him it late) so school have obviously done it wrong because he took it no problem Tuesday and Wednesday.

Useless.

Oh well they’ll have to deal with him unmedicated later on in the day because there’s not much I can do about it and I’m not ringing camhs which is what they’ll expect me to do.

And he isn’t going to keep coming home early so I can give it. His hours need to be going up not down, they can’t refuse him in school for any longer because he’s refusing medication, that’s illegal.

Not sure what I can do, I don’t have a camhs review until January and I’m not making contact before, as much as his teacher is going to start banging on at me.

I’m just glad he breaks up 2 weeks tomorrow. His school are doing my head in big time.

I’m going to have to try again, starting to get ds to take tablets, I’ll try over the Xmas break when he doesn’t have the stress of school, I’ll start talking to him about it now, his tablets are tiny and can be broken in half too. God knows how ill do it, he refused to swallow it last time I tried.

Yeah you guessed my answer Carrie. Lol

Ds goes behind the checkout tries to get into the till, eats all the pick n mix from the serve yourself things in the shops, opens things off the shelf and eats it, I don’t take him in the supermarket at all. Very rare if I do. Too stressful.

I was putting him in the trolley seat until last year until i got him stuck…. 🤣

Ffs @danni0509 how ridiculous of them.
@carriebradshawwithlessshoes DS is mood dependent, I.e. often he's fine in those situations, but if he's had too many demands and he's hyper, no chance!! Amazing that you got the diagnosis, I'm sure they don't misdiagnose.

I’ve had an email from his teacher, basically he tried to give ds his medication today and ds tipped it on the carpet and said I’m not drinking it.

He did the same yesterday but poured it over the table but I did not know that. Nobody mentioned he hadn’t had it yesterday (that’s how much I can’t tell whether he’s on it or off it 😅 I didn’t even know)

I’ve asked ds why he hasn’t taken his smoothie at school and he said i only want xxxx to give me my drink. (He’s like this at home, won’t take a drink off anybody but me, my husband gets him a drink ds will pour it away) he’s ever so strange and set in his ways.

I’ve messaged his teacher back to explain but I also am aware that the same person can’t give it every day, sickness / what if she leaves etc etc, his teacher has said ds keeps saying to him I don’t like you I’m going to hit you and I don’t like my mum and I’m going to hit her too, and he said he can see when his medication is wearing off as he starts to change his conversations from nicer ones to saying really unkind things to the staff and children about half 11 and he starts looking for trouble.

I have said to ds tonight it’s ok if x or x or x give your smoothie too and xxxxx will give you it sometimes aswell, it can’t be the same person everyday the teachers have to have their dinner so it will be x sometimes and x other times, it’s still the same smoothie. He said they give me it in a horrible blue cup, so I’ve had to send another email telling them to change his cup 🤦🏻‍♀️

Try again tomorrow, although I won’t hold my breath.

His teacher said we really need this medication in him and asked when his next appointment was… camhs aren’t going to be able to help though, if ds won’t take it what can you do?!

Carrie do you know if you get a private adhd diagnosis you have to pay private for the medication?

They do swap to the nhs eventually but once he has a dose he’s stable on (I read on here, I think it’s about £120 a month for the medication)

Are you going to trial it?

I think you pay private initially (3 months or so) then swap to nhs.

I think we will trial it cos nothing to lose… if he’s no different in terms of focus / attention etc I’m told we can just stop any time. Need to get ecg done though which I don’t think will be overnight

Makes sense they are being cautious regarding ecg, it can affect heart rate / blood pressure, ds is supposed to have bp checked each appointment, he’s not had it done once so far. The dr has to write a letter to my gp each time to say ds has refused the bp check (I think to cover his own back, which is fair enough)

Yes you can definitely stop at any time. I had read before they do a blood test aswell but this hasn’t been mentioned to us and ds has been on them 3 months. That’s not something he’d have either.

Did school / do school suspect adhd? I can’t remember you mentioning it, Im assuming they would have filled a questionnaire in?

Yearly question I ask. What have you all got your dc’s for Xmas?

I just have a niggling worry that I’m doing this for (the wrong for DS) school. In all honesty if school were giving rave reviews about him his behaviour at home is not so terrible. Yes there’s stuff like the Sainsbury’s incident but as I understand it whilst meds calms impulsivity it doesn’t make them realise social norms!!

It’s weird isn’t it… what they do is what all kids would probably like to do (grab the pick and mix and eat it, investigate the till, run riot etc) but there’s something inherent in say DDs mind where they know they just can’t do that. It’s like our discussions about learning, there’s lessons DD hates but she obviously participates because she knows she has to and understands the authority of the teachers over her own personal desires. I have no idea how DS will ever appreciate that looking at him at the moment!!!!

Think we crossed Danni…

School have never said the word adhd but upthread (think my rambly post of 13.26!!!) I’ve mentioned some of the phrases they have included in his EHCP which sounds like adhd to me. School have not been consulted for this private diagnosis. More a description from us of DS and extracts of the EHCP we have shown to them. I feel a little that there hasn’t been a lot of probing but if meds are safe and may have an effect that doesn’t overly bother me I’m curious to see if he’s different. His nhs paed is aware and on board and knows we have short circuited cahms ( she says many people do due to wait times etc.)

It is costly Danni but we have wasted ££££££ over the years on a lot of crap therapies. This is a drop in the ocean compared to that.

Presents… currently zilch. I know I’m a Scrooge but DS has zero interest in toys as I’ve said before. DD asks for dolls but the house is packed out with them she won’t give them a second look after a week.

I telll a lie I’ve bought them matching rabbit onesies 🤣🤣🤣🤣🤣

I must admit and I appreciate others may disagree (and I’m not posting again after this!!!!) the whole diagnostic process for stuff like adhd I just find bizarre. DS has a list of ‘issues’ around hyperactivity/ focus/ attention etc that I can discuss with a doctor in precise detail and school can contribute to that. If there are meds that help with those ‘symptoms’ why can’t they be prescribed without a diagnosis of adhd being slapped on his medical records? I’ll take the diagnosis if it lets me try the meds but it’s like if you were to see a dr with low mood, anxiety etc they may well prescribe ADs to see if that helps without ‘diagnosing’ you with clinical depression/ bi polar/ anything else??

Anyway I’ve done it now so we shall see if there is proof in the pudding.

carrie ds doesn’t do stuff exactly like that. When he was younger he would try to get behind counters sometimes, or through doors he shouldn’t and he still now has problems if told he can’t go somewhere he wants to like a closed off area of a park. He will often not listen and go there anyway but in general he is pretty good and goes to the supermarket fine though we generally have to get him something so he doesn’t go all the time. He only likes a handful of foods though so would never take someone else’s. Useful to have the adhd dx, I hope medication can help if that’s what you decide to do.

danni ds has written a list for Santa that has some hot wheels and imaginext stuff on it. He plays with toys less at the moment though as he’s obsessed with his game & YouTube.

I watched the McGuinness documentary tonight and thought it was very good. I love how honest they both were. Someone upthread said the kids were thriving in a ms school. I don’t remember that being said in the documentary, did I miss it? I guess the fact that he visited a ms secondary school implies they are in ms but the activities Felicity was doing at home seemed more SS. Maybe that’s just for fun.

I read somewhere that adhd caused behaviours that were states not traits, as in they are present all the time. DS can be v impulsive but can also sit and be, read a book with me etc, if he's in the mood and it's hid choice. He doesn't recognise any inherent authority either, it's common with asd, his new school call all teachers by their first name and build relationships based on trust rather than power. He does stuff to get a reaction and so the trick is not to give it (e.g. I pretend lots of things are qccidents!) So it takes the power out of it, if that makes sense!

Magrat have you seen a reduction in behaviour with the ‘accident’ approach, or a faster de-escalation/no escalation where previously there would be?

DSs behaviours aren’t there all the time… for eg this morning he has just sat nicely at opticians then for breakfast in a cafe with me. I did tell them this in the questionnaire. But then we nipped into a quirky little shop with lots of trinkets etc and he just wanted to run and grab. There was a sign saying breakages must be paid for so we left. DS is at his worst where there are things to touch or grab he has a compulsive desire to do both of those things. Plus the generally refusing to engage/ sit at school.

Right off to the panto. We are in front row at the end. I hope to god we don’t get picked on with the person on stage asking DS questions, he’ll have a long wait for the answer. Feel thoroughly 🤢🤢🤢🤢🤢🤢🤢. Will update later, hope you are all ok x

carrie I hope the panto goes well. I was going to take ds to the relaxed performance at our theatre but he says he doesn't want to go. Maybe next year. We sat at the front one year when I took my nephew and my step-dad was at the end of the row and got pulled up onto the stage!

Ds refused school again this morning so he's only been there two days this week. Still he did a few pages of work with me before he was allowed the TV after normal pick up time. His writing is improving and he seems to be holding the pencil much more comfortably

I watched the McGuinness doc too @openupmyeagereyes and enjoyed it overall. I did think the contrast between the two of them was quite stark, and wondered if they had egged it up a bit for the benefit of getting a "journey" for the narrative of the documentary. Surely if he was as clueless as he presented at the start he would hardly have been out doing all this advocacy stuff they've been doing over the last couple of years? I found it quite hurtful the way he was worrying about whether his children actually loved him or were just saying it, especially when they then played the clip of them larking about together and you could see how close they were: how could he doubt? Also how he made things worse with the girl who got overwhelmed at the secondary school was uncomfortable to watch - but then that's an easy mistake to make unless you have a kid who presents just like that (I could imagine DD doing exactly that in a few years time: if you tried it today she wouldn't even speak to a stranger on camera in the first place!)

So some of it was hard to watch, but overall I enjoyed it. I especially enjoyed seeing Christine's reactions and hearing about her journey. It must have been so hard for her when he was working away all the time after the Dx - with three small children and trying to wrap her head around what autism means while being UnDx'd autistic herself!!! That is a truly strong and amazing human. I was impressed that they're obviously still very close and supportive of each other despite (because of?) going through all that and having such different reactions early on.

I think he did say early on that the kids were in MS (or at least, he said 70pc of autistic kids are mainstream and I think it was implied that his were part of that? Maybe it wasn't said explicitly.)

Very surprised they hadn't told the kids they are autistic yet though. Surely they will have had to tell them before the programme aired - otherwise they'll hear from school friends whose parents watched it instead which would be awful?? I assume they must have told them by now, but it seems a bit weird to wait so long while also being so public about it - the risk of something going wrong seems massive.

Hope the panto is good and the Dame picks on somebody else @carriebradshawwithlessshoes!!

Light I don't think it was said explicitly but definitely inferred from the programme generally. I think the twins are 8ish now so it's about 4 years since their dx (I think they said that when the doctor came to visit them). I was surprised to hear that 70% were in ms, I don't really know why I was though. I suppose since ds would be considered by many to be at the less severe end of the spectrum, if we were to use that analogy, and we are still struggling massively with ms.