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Primary School Auties 10: Summer and beyond 2022

1000 replies

LightTripper · 19/07/2022 10:58

Thread 10.

Ooops, sorry, filled up the last thread without noticing - here we are at THREAD 10!! (How did that happen?)

This is a thread for the parents & carers of children with additional needs. Most of us have autistic/ADHD children in primary school, but anybody is welcome to join us to chat x

Links to previous threads below.

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
Thread 7
www.mumsnet.com/Talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7
Thread 8
www.mumsnet.com/Talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8
Thread 9
www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022

OP posts:
Bobobab · 26/09/2022 06:48

Sorry to butt in but I've been a long time lurker on this thread! I got 38 which has floored me 😂. I had significant sensory issues as a child but actually being autistic myself hadn't really occurred to me, even though I had seen it could be from my side (no-one is diagnosed, not even DS yet although I'm sure he will be)

Very interesting!

glittereyelash · 26/09/2022 07:51

Thank you everyone for the book suggestions I will definitely look in to these today. @LightTripper my nephew was very focused on death for a few months. My grandfather died a few weeks before my mother so it was an awful lot on the older children in the family. We'd all made the mistake of saying grandad was very old so when mam died they got very confused and afraid because they knew she wasn't old. My son was really to young to understand but my aunt is very sick now and he visits her often so I'm going to have to get the conversation about death started. I don't think there's any way to be good at this.

LightTripper · 27/09/2022 22:50

I agree @glittereyelash - there are no good ways to do it. I think we can just try to avoid the bad ways and then just accept it's never going to be a nice conversation.

Welcome to the thread @Bobobab !! That's a high score so far I think?? I feel like we should get you t-shirt or something! Grin You'll probably find like the rest of us you get different scores on different days. I always score higher if I'm feeling tired/grumpy and antisocial Grin

OP posts:
StarDog · 29/09/2022 19:39

Advice on this one would be really appreciated ...
DC moved to new school this year along with various new diagnosis of three and four letter word variety. School are great with comms, acting on feedback, DC happy (apart from having to attend school - nice to be on here and not have to explain that!).
Issues last week and dealt with by school. New issue which now appears related to previous issue with older children involved encouraging DC to engage in inappropriate behaviour.
School have proactively investigated, linked toe incidents and put in place actions to address issues on a number of levels.
Ultimately, DC is always going to be vulnerable to this type of influence and I'm not sure where to go from here. School response is poles apart from previous school and feels genuine.
Will document it all to school but am I missing something here or overthinking given experience with previous school?

livpotter · 30/09/2022 08:53

Stardog it sounds like the new school has been good about implementing safeguarding for your ds. Are they going to follow up with you to let you know if the plans they have put in place are working? I think whether they are actually doing what they say they are doing may be a bit of a wait and see situation.

Hope everyone else is good?

Can't believe we're at Friday again, not really sure when the time is going at the moment.

LightTripper · 30/09/2022 09:21

It sounds like the school is doing the right things @StarDog but it's good to keep an eye on it. I remember doing things to entertain the other kids at primary and being egged on to do it - and enjoying feeling "part of the group" and like I was making people happy if I acquiesced - in my case mainly swearing and I never got into big trouble for it (I was too much of a rule-follower to ever risk it in front of teachers), but while I always realised the other kids found it funny when I swore because I was "other" I never realised there was a name for the "otherness" (I thought it was because I was posh - but looking back there were other posh kids in the school but it never happened to them!). In my case I don't think it was malicious - they were just bored and it was entertaining to see me act so out of character - but I know I would still be really upset if I saw similar thing happen to DD.

If it feels like bullying to you I can't remember how old your DS is (this may be a bit old for him), but there is a good book by Emily Lovegrove (who is an autistic psychologist) called "Autism, Bullying and Me" that might be useful? It explains and describes bullying and ways to deal with it at a very child-friendly level.

OP posts:
SusanStoHelitsPoker · 30/09/2022 10:46

Happy Friday all!
@glittereyelash I think you just have to be straightforward and honest but it's so hard. When Covid was at its worst before the vaccines, DS got very worried about my parents dying, and still asks a lot about how many years they have left. It definitely unsettled him. When our cat died, it brought it all up again, bless him. I just explained, everything that is alive has a time to die, but no DS I can't tell you specifically what date and time that will be. We talked about what we think happens after (I had a big crisis when the cat died too and did a lot of thinking about this) and how everything lives on in our hearts and memories. He drew pictures of the cat, one for each of our bedrooms, so the cat could look over us at night as we dream and we'll never forget him. That seemed to help although I did have to be very clear that the cat was not coming back physically!
@StarDog it sounds like school are doing all the right things but yes keep an eye on it.
We are fine, pootling along again, busy at work and have applied for another part time thing. DS did his cookery session yesterday and was very proud of himself. Parents Eve went OK. DS now counting down the days til Halloween!! He didn't go to sleep til 10.40 last night but I realised why. DH did bedtime the night before and got him to sleep so early that he had 11 hours!! Im still taking DS myself on the school run after a sorry not sorry apology from the LA about changes to drivers and inappropriate stuff in the car. Just waiting for my provisional license still then I can get cracking! Hope everyone is alright and that weekends go well!

SusanStoHelitsPoker · 30/09/2022 10:48

Gosh sorry @glittereyelash just read that back and in no way am I comparing losing a parent to a cat!! Sorry! I just meant that's how we dealt with the questions around death and dying. Sorry again :)

glittereyelash · 30/09/2022 14:07

@SusanStoHelitsPoker I totally get the comparison pets are at the heart of a family and its often a child's first experience of grief. We are doing pretty good here all happy, all settled no major dramas so I'm not going to complain 😊

StarDog · 30/09/2022 18:26

Thank you Susan, Light and Liv. Don't feel I've been best advocate for DC in past so doubting myself this time.

openupmyeagereyes · 03/10/2022 18:45

I need to go back and re-read the thread but popped on to say that CAMHS are going to offer ds support, he will go on their ‘neuro’ team waiting list (for ND dc). The waitlist is managed by need so we’ll have to wait and see how long it takes.

I haven’t heard yet about DLA.

openupmyeagereyes · 03/10/2022 18:46

StarDog is the school mainstream?

StarDog · 03/10/2022 20:28

Feel like I read and reply to these threads in my head then realise I've not replied in reality so sorry for all those I've missed :-(
Open - yes mainstream although I do wonder for how much longer on the tough days.

SusanStoHelitsPoker · 03/10/2022 22:19

Hooray @openupmyeagereyes that's great news!
@StarDog the right setting is so important isn't it but so hard to find!

ahna68 · 04/10/2022 08:20

Hi everyone, have been meaning to write for ages (also with my Hanen learnings) but somehow it’s been particularly a hectic time. I will do that re Hanen this week tho.

We have started DD on melatonin during the last week. Advised to start on 0.2mg and increase weekly if needed up to a max of 1.5. So far it seems to work in sending her to sleep (she’s been asleep at 1930 rather than the usual 10/11) but the night wakings continue and if anything seem worse now. She is just consistently up at 1-4 at least, sometimes longer. We are tempted to stop the melatonin, I just don’t see that it’s going to fix the nights and although it’s nice to have an evening of more quiet time I think the overall sleep impact is worse if anything (although perhaps for DD she is getting an extra hour or two). Did anyone see a similar pattern and then it improved?

DD is now first spot on waiting list for the SEN pre school / school. Glad about this, although I must say I find it grating when people can be like ‘omg that’s amaaazing news!!’ - I’m still in a headspace where the world of SEN is tough to get used to and it’s hard to see any of it as ‘amazing’.

now for coffee before a day of meetings. Sending love to all

openupmyeagereyes · 04/10/2022 09:26

Ahna we started with 2mg of slow release melatonin. It didn’t make things worse but it didn’t stop the night waking either. I hope things improve for you.

I had a DLA payment this morning that looks like the equivalent of HRC & LRM which is great. Now to decide how to use it. I think a psychologist might be the best option as we may have to wait more than a year for CAMHS? Really not sure.

carriebradshawwithlessshoes · 04/10/2022 10:05

Open, you are in the money that is wonderful. I’m not sure either, could school advise? I would also hope if you contacted a professional and said is this something you feel you can help with and how, they would give an honest steer on that before just taking the money.

Ahna, the lowest dose I thought for melatonin was 2mg this is the typical start point. As Open says, slow release (though that does involve swallowing the tablet whole.) I don’t think it’s uncommon to not sustain sleep in which case you have 3 options, 1. Move to slow release if you can (if it isn’t that already) 2. Up the dose 3. Couple it or replace it with another sedative which sustains sleep (melatonin is well known for inducing but not sustaining sleep.) We use a tiny amount of alimemazine as part of option 3 and it works amazingly.

Things have been quite tough here, I started with an awful vomiting bug that lasted 24 hours of constant vomiting then wiped me out for a week. DS then got it before I was well enough to be looking after him. We are now both OK but DS for some reason known only to himself has a new party trick of screaming/ screeching randomly and then finding it hilarious when I tell him off. He does it and looks for a reaction, the more I tell him to stop the more he is doing it and finding it just hilarious. It’s making leaving them house very hard. I asked if he’s doing it at school and they said no (FFS…). I do find it really really hard to have a child who is non verbal and non communicative (as in using a recognised system like PECS) but to have that on top of a child who is constantly screaming is unbearable.

Ahna I totally hear you, sorry if it’s un PC but no I’m not singing from the rooftops about the situation we have either. Not that DS is ND, that’s absolutely fine, but the specifics. Being non verbal. Not picking up PECS. Having daily toilet accidents. Not having friends. Not following many instructions. And now fucking screaming all the time. Not what I envisaged for DD either in terms of her having a sibling support/ friendship when we were planning DS as a second child.

I think Ahna rather than stressing about the SEN world it’s better to look at it like it’s a label/ description but so what… your DD is where she is now, as is my DS and they have their current benchmark. By sending them to a SEN school (which is just a term) you are placing them, hopefully, in the best environment for them to progress beyond that current benchmark. I for one have had DS in a ‘normal’ MS school for 2 years where he’s made no progress above that benchmark, he’s been babysat and stagnated. So yes, I could say happily my children both go to x school, our local MS but what’s he’s getting out of it? Zero. So whilst I don’t embrace SEN school either if it moves him on, I would send him anywhere. I hope that makes sense. I have another thread on SEN schools and progress and what can be attributed to the school you may have seen.

On a final note what I do find hard is the reaction of other people when I say about DS school. He gets the bus home now and we live in nosey neighbourhood ville. I can see the certain twitching when it pulls up. One neighbour pounced on me the other day, I knew why. She said oh!! I see DS has erm changed schools. I explained. She said ‘oh dear, I’m really sorry. There but for the grace of God is what I say.’ I mean how do you respond to that??!

carriebradshawwithlessshoes · 04/10/2022 10:07

Curtain!

SusanStoHelitsPoker · 04/10/2022 10:44

@ahna68 it's a process, isn't it. Your DS is still the same DS, just with better support.
@openupmyeagereyes good ideas re the money.
@carriebradshawwithlessshoes oof sounds tough with the vomiting bug. Re: the screaming, DS used to do this when he was younger and less verbal, and it was purely because I think he enjoyed being able to get a reaction from me! So, oddly as it sounds, I just stopped reacting yo it and carried on with what I was doing or saying, and he'd look v grumpy but stop it, and after a few days it just petered out. Sometimes he does it now and I say, oh DS I hope you don't hurt your lovely voice doing that, you know how much I like your singing etc.and he stops it. Or sometimes if he's being very loud, I'll get one of his toys and do a funny voice so it's the toy asking him to be quieter as its giving the toy a headache etc, he finds it so funny it distracts him from trying yo wind me up 🤣
It is hard not to get cross but, with DS, that was the reaction he was looking for so by changing my reaction or not giving one, it changed up the pattern.
Less than three weeks til half term everyone!!

SusanStoHelitsPoker · 04/10/2022 10:46

Oh and what a horrible thing for your neighbours to say Carrie!! I'd be tempted to reply by saying yes it's a terrible shame not all children can get such a wonderful standard of education in such a caring environment as DS' school!!!

carriebradshawwithlessshoes · 04/10/2022 11:12

Thanks Susan, interesting your DS does/ did do this too. I guess if it was punctuated with language I could cope a bit better! Funny how I often think no other child does what DS does and yet they obviously do…

ahna68 · 04/10/2022 12:52

Thanks all. Yes slow release could be something to explore - don't think it's readily available here in NL (also not for a 3yo) but will discuss with the doctor. Interesting that the dosage sounds so low to others - it is packaged in 0.2mg here, I think they just have a totally different attitude to prescribing anything. It can be frustrating! That said, 0.2 clearly had a big effect on her at bedtime, so I'm a bit reluctant to up it.

@SusanStoHelitsPoker you are right of course, also @carriebradshawwithlessshoes . It can feel like a bit of a label but in a way it can be a helpful one also. Will approach it all with as much optimism as we can.

@carriebradshawwithlessshoes what a strange / annoying comment from your neighbour. I find increasingly that people's comments can bounce off me a bit but I definitely need to work on a good response to them. It's crazy what people say sometimes wtihout realising it's not OK.

On a practical note, DD won't keep her shoes on - we have lost a few without noticing in the supermarket etc. At daycare, their rules have now (understandably) changed with the change of seasons and they are asking us to get her shoes that she cant take off. Currently she has velcro. Even the trainers I've seen mostly look to be false laces plus velcro. Any ideas for what she woulnd't be able to take off? She still tends to be in baby sizes for shoes so I just think they are mostly designed to be easily taken off!!

@openupmyeagereyes great re funding. I am not too familiar with the system - can you try something in the first instance and change to something else if you feel it's not a good use of it?

livpotter · 04/10/2022 13:51

Carrie ds also went through a screeching phase and when he's annoyed with us he still does it. Agree with Susan the best way to get through it is to ignore it. I actually just wore earplugs for a bit!

Ahna shoes they can't removed is the dream! Ds was barefoot from about 3 to when he started his new school two years ago (yes everywhere including at school!). We tried ALL the shoes to try and find ones he wouldn't take off and never succeeded. He now consistently wears shoes when we leave the house but only plimsolls and they get taken off the moment he steps in the door. Basically I knew that we would lose so many I ended up just buying the cheapest ones I could find, thank goodness for DLA!

Open that sounds like a good idea, glad the money finally came through!

We're ok here, feel like we're rushing towards half term though!

openupmyeagereyes · 04/10/2022 15:40

carrie what an awful thing for your neighbour to say, very condescending. Sympathies on the screaming though, a strategy of ignoring it is worth trying. Glad you're feeling better now, sounds awful.

liv yes, this half term is flying by.

Ahna DLA here is not ringfenced, I think families spend it on whatever they feel is appropriate for their situation. We can definitely try something out and change if it doesn't seem to be working.

I had a lovely, fun night out this weekend and met the lovely 19 yo autistic ds of a friend's friend. Gave me hope, I'd be thrilled if ds turned out similarly.

dimples76 · 04/10/2022 18:52

Oh Carrie what a thing for the neighbour to say!

Hurray for the DLA coming through Open - I think that you should definitely allocate some of it for some babysitting/pampering for you.

DS tends to threaten to scream now if he doesn't get his own way - I just tell him to go for it and stick to my boundaries. Unfortunately he sometimes uses it against DD - screaming in her face. So then I have one crying and the other screaming. I asked my family for ear defenders last Christmas but I don't think they got that I was serious.

DS has been getting in trouble at school. He hit another child on the head with a stick and when asked about it he said that he had done it on purpose and wanted to make his TA cross. We have EHCP annual review in a fortnight and for the first time in over 4 years (the original formulation meeting) the case officer from the LA is in attendance. I don't know if this is due to my Tribunal success and the OT funding or if school are more on board with move to special school or something else ....

How are you Danni?

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