Primary School Auties 11: 2023 is here

[openupmyeagereyes]

Thread 11.

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
Thread 10
www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

Ahna we still don't have a diagnosis but have received many reports that have made me weep so I can understand some of your feelings. I think that you and DH just need to be kind to yourselves and allow yourselves time to process it. As you say going forward it will hopefully allow you to access appropriate support.

Carrie DS has a whole set of noises that do my head in. Unfortunately, I have done a rubbish job at concealing the effect that they have on me - my auditory sense is definitely over sensitive. He makes horrible crow like cawing noises, clacking noises, shrieking etc. It's worse if he directs it at DD as he gets a big reaction so I have her weeping and wailing as well as the crow. Generally ignoring it is the most effective strategy here but easier said than done. Occasionally he will respond to humour/playfulness and we will get out DD's Dr's kit to investigate what has happened to his voice.

DS has developed a new thing where he strokes my face and calls me sweetie. I think that this is inspired by something on YouTube. It feels very inauthentic and I also keep flinching when DS goes to do it as I think that he is going to hit me. DS noticed my reaction this morning and was puzzled - he seemed mystified that this might be a natural reaction based on his previous slaps

Hi all. @Ahna65 be kind to yourselves, it's a lot to process even if expected.
Like @danni0509 and @openupmyeagereyes said, things can change so much. I've already voiced my thoughts on the levels and labels like high or low functioning, so I won't rant on again, but to us it's not helpful because DS can be all those levels in one day sometimes depending on tiredness, demand overload, processing capacity etc. So e.g. on some days, he acts very NT but then, later on, might start stimming and shouting out his favourite phrases etc. He is very verbal but still can't fully get dressed. Etc.
@carriebradshawwithlessshoes DS still goes through phases of shouting etc. I do think making a big deal of it makes it worse because its seen as a game. When it's really loud or high pitched, I'll say ooh DS is your throat OK? I worry you'll lose your voice. Or we make it into a game where one of his maths cube monsters will say something like 'oh my ears, do you mind' and then I'll distract onto something else. His noises now are mainly humming, rapping loudly about winning games, and pretending that he can't speak (which he does when he's tired and doesn't want to engage). He has verbal stimms too which are less purposeful (e.g. singing a news jingle repeatedly to himself while he's playing) but I'm fine with that as I've realised that DH and I both have repetitive phrases that we like to say! When DS is rapping,ive started joining in with a few yeah yeah uhuh uhuhs, which went down well and made it more fun!
Work is getting worse however and I'm now on full job search mode. I've realised I'm not staying here so need to find something else now. Hope everyone has good weekends!

Sorry when I said pretending not to speak, I didn't really mean that per se, I meant that he mimes not speaking but actually I think he gets so overloaded that sometimes he can't process it all for the speech to come out.
@dimples76 sounds tough. DS used to be much more physical than he is now in his anger and it drained me so much. We gpubd Zones of Regulation to be a revelation,that and I suspect just getting a bit older.

Good luck with the job hunt Uno. Sorry that it's getting worse

Thanks @dimples76 . Day to day is OK and the hours etc are a great fit, but bigger issues are impacting me tbh. Gah.

Carrie ds never shuts his gob, he makes loads of noise, maybe it’s a vocal stim your ds is doing. Ds also talks to himself constantly, when he’s going to sleep he has constant chatter telling himself stories.

I know all the noise is annoying though, its like a sensory overload on my brain.

it’s like a baby when they hear their own voice and they don’t stop, my niece is 1 next month and she’s hilarious, I got a video of her and she’s so loud sat screeching at the top of her lungs. I thought it was cute but she drives my sister mental with it!

At school They’ve told ds at certain times to practise finger on lip. Group reading, teacher talking giving instructions, etc etc.

To be fair, I do understand, but then I also think it’s a special needs school?! It’s impractical for all.

One thing I have wondered about is whether DC’s behaviours/ traits etc get worse when they are in a SS. Not because they are copying particularly (DS doesn’t copy) but just because they are immersed in a school of children behaving differently so that becomes their ‘norm.’ DSs school is very mixed as per previous comments so he sees a lot (as do I) that he never was exposed to in MS (which wasn’t right for him, I’m not saying it was.) Can SSs make a child ‘worse.’?? Hope that’s not too much of a controversial qu.

anyway irregardless of the answer it’s really driving me mad. I love some of your suggestions Uno about his voice sounding funny etc but that just wouldn’t resonate with DS. He’s doing what he wants come hell or high water.

im sorry about work, it’s miserable to be in that position I’ve been there! Hopefully you can find something better soon…

Not in our experience @carriebradshawwithlessshoes .
Rather, DS was always himself and now he is more comfortable as himself.

Not in our experience @carriebradshawwithlessshoes .
Rather, DS was always himself and now he is more comfortable as himself.

Never thought I’d say it but this opera singer thing is worse than screaming 🤯🤯🤯. Was really pissed off on weds. He was off unwell and at home with me til midday. Absolutely fine. Then my mum aunt and cousin popped over for a coffee and I literally could not hear a word they were saying cos he was standing in the middle of everyone doing it. They were all super calm and trying strategies to shut him up, nothing worked. My aunt said I don’t know how you can cope with this. Made me feel very 😡😡 and also 😢

If the bus people moan again (‘he’s been like this all the time, my ears are ringing.’) would you say anything or grit your teeth?!

Carrie I would probably say 'imagine what it's like for me!' My ds is constantly making loud noise too. I'm very sensitised to sound now. Some days if he's being particularly noisy I put in ear plugs.
I think in terms of behaviour it probably depends on how the school manage it and what the cohort is like.

Dimples sorry about the annual review but it's good that the school are on your side. I hope the LA come through for you without a fight.

Ahna I hope you're ok today. It is a shock getting the diagnosis even when you're expecting it. They didn't use levels when ds was diagnosed so I have no idea what he would have been back then. Having said that everything you post about dd sounds so like my ds was at that age so maybe he would have been level 2/3. My ds has made massive progress so like open says I don't think these things are fixed.

Open so much better thanks. He seems to be responding well to the social story and the checklist. We ditched the calendar as it kept getting crumpled up and thrown in the bin!

Can't believe it's a four day weekend. It feels like they are never in school.

Carrie I think that I would probably reply in a similar way to Liv or just shrug. My Mum would say - he can't help it

Liv that sounds very positive

Gosh, lots of posts.

Yes my ds is noisy but not like that. He talks a lot, hums, sings and parrots quotes from books/programmes/YT videos. He often hums while he eats. That sort of thing. He’s pretty good though and will stop if I ask him, which I generally only do when it’s early o’clock, if he’s talking over us or shouting because he’s cross, otherwise I let him crack on.

Uno I hope you can find a role that’s a better fit.

carrie I agree with liv’s suggestion. Honestly, what do they expect you to do about it? I’m sure it will pass at some point.

liv glad school is going better. Does the social story just outline the routine or is there more to it?

@Ahna65 glad you got the diagnosis.
My DD makes noises too, mostly whistling but it sometimes morphs into a high pitched squeal.
@liv glad school is going better.
Not sure what's going on with DD, she's been going to school but not wanting to engage and just lying and playing with her fidgets/colouring instead most this week. School are still counting it as good as no violent or disruptive behaviour but can't work out how to get her engaged again as say nothing has changed. She was off for the strikes yesterday but that doesn't explain earlier in the week.

Thanks everyone, glad is the wrong word but I’m reassured to hear others found it tough to get the diagnosis through. Think DH was hoping for more of a prediction although he surely knows it’s not possible and any prediction is of limited value. He’s not good at not feeling in control.

the noises sound challenging but @carriebradshawwithlessshoes the bus commenting would piss me right off. Think it’s more than ok to say something back!

had some nice one on one with DD this morning, she ended up walking about an hour without needing a carry. Only got difficult when she spotted some water and then it was a case of wrestling home. The weather feels like it’s finally improving. I despite growing up in N of England and living in NL I am a bit of a sun worshipper and the sun makes me so happy. Will try to have a little run later. Anyone else still doing a bit?

We want to do some work on the garden (nothing fancy but mahbe try to get a trampoline and a swing so that we don’t always have to be off to the playgrounds).

a good weekend to all

Ahna swings and a trampoline have got a fair amount of use here over the years so a fairly good investment.

dimples I meant to say that I’m sorry your niece is having a difficult time. Maybe one of the upsides of a larger school will mean more chance of her finding some friends that are more likeminded. I hope so anyway.

I hope everyone is ok and today wasn’t too tricky, it was fine for us.

Ds and I went for a walk in some woods we haven’t been to for a while this afternoon. Only half an hour but nice. We had a good weekend: zoo, swimming, family, soft play. I even got out myself with a friend.

Having issues with ds, as always.

I’ve had his teacher phone me 4 times in the last week. And an email on top for good measure.

Today he’s broken her glasses, bit her, and smacked her face, threatening his class again, swearing constantly. Writing fucking on the whiteboard again. Calling people arseholes etc.

I think they think he’s being dragged up. In fact I’m sure of it, some of the things his teacher says makes me think this. Which really pisses me off.

I’m not perfect. But I do a bloody good job with ds. He’s parented correctly, doesn’t ever get smacked, (gets shouted at occasionally, but who doesn’t shout when pushed too far - I think back to when I was little and I did 1% of what ds did and my mum would wipe the floor with me, I’m so much gentler and understanding than my mum would’ve ever been!!!!) we monitor what he plays on / watches, he’s loved and taken out / bought everything he needs, I spend hours and hours and hours teaching him things / rules / working on his behaviour, always reply to school, he goes every day, I do his reading with him and sign his diary, surely she must know he’s not dragged up. But certain comments she says it’s like she’s blaming us!

she keeps making comments. Like where’s he heard that? Can you talk to him about this? Can you tell him this isn’t appropriate Etc etc. can you talk to him about being kind to his friends, could you start discussing rules, what boundaries could you put in place ! etc

WTF I ALREADY DO! EVERY PISSING DAY.

Its like I don’t spend my life doing that already. I make it crystal clear that I do that.

She phoned today, name came up, I answered and said hello, what’s he done now?

She seemed suprised I said that, but 4 calls in a week regarding behaviour is already telling me what she’s phoning for.

Really fed up

I have phoned CAMHS. I got a call back from the dr, his usual nurse isn’t in. They must have a dr now !

Anyways I discussed everything, I said about school breathing down my neck every day again and some bad behaviour at home. Not listening, looking for trouble, trying to cause a fight with me all the time. And they increased his medicine from tomorrow.

So he’s on 36mg of atomoxetine from the morning (was 18mg) but I don’t like the jump overnight so I’ll do 2mg extra a day until he’s on 36mg. His sertraline will stay the same.

His teachers numbers also getting blocked 🥹🤣

danni I’m not surprised you’re fed up. I would use the info in your post and send his teacher an email telling them this. For goodness sake, my ds has heard people swearing in McDonalds, on the street, teenagers in kids parks. The list goes on. I have never hit him yet he sometimes hits me when he gets upset. You would think they understood this.

Despite what I write on here I don’t make habit of swearing where ds is, only because he’s a grass. 😅 I’m careful, although not a Saint, and the odd slip up happens. It’s Usually ‘for fuck sake ds’ That would be my fault entirely if he said that.

He hears swearing everywhere. The last taxi once swore in front of him (unprofessional) and he broke his neck to tell me. He tells me Blake at school swears at him regularly. All sorts.

He’s autistic but doesn’t live under a rock like they think these kids do. He’s exposed to the same sort of stuff as ordinary kids. He just finds it much harder to understand that x isn’t said, or you don’t do y.

This teacher is a bit OTT though…..

Her emails are a bit daft sometimes, like she’ll email me to tell me he keeps taking his shoes off. I personally wouldn’t waste my time writing that. So what if he’s taking his shoes off. It’s literally no issue whatsoever… or she’ll say he’s drinking everyone’s drinks and could I have a word with him. (He has his own drink, what does she want me to do about it, the staff should be supervising him) It’s pointless me having a word if I’m not there to stop him. That’s there job.

I have said to the school before, (some of it warrants them phoning me I appreciate that) but even then it’s a special needs school he attends. Surely they haven’t only seen some of the worser behaviour with just my ds?

I wouldn’t believe it if they told me they had.

Wow, those phone calls sound OTT Danni. I totally agree - there's nothing you can do about him taking his shoes off at school and taking other children's drinks. My DS is always calling me an asshole (which he learnt from his cousin who had heard it from other kids at school). He also keeps shouting 'Jesus!' - no idea where that's from but I do say for God's sake (not in response other than in my head) . You are doing an incredible job.

We have had a good long weekend (DS was off due to strike today). I am hoping that school has some news re the MIA case officer tomorrow as it will be a week since she was meant to be at the AR. This evening we went to a trampolining session organised by a local disability charity - exclusive hire, really quiet, only £4 per child. Even got to see my friend who we normally can't meet up with as the eldest bolts off. It was great to see him having fun and DS, DD and her youngest played together really well. DS told me he loved me at bedtime which is not a common occurrence.

Open we do hope that DN will find her own tribe but it's a bit hard to envisage. Her twin has had 2 close friends since he started school, one has also recently been diagnosed with autism and the other has experienced a lot of trauma.

I didn’t get a call from school today but staff helped ds into the taxi and said to his Pa, you’ll need a hand today and rolled her eyes. So I take it he didn’t have a very good day.

He came in and said ‘has my teacher give you any evidence today’ 🤣 wouldn’t tell me what evidence she has on him though.

He’s had 2mg more of his medication this morning, I’ll do that each day and by next Tuesday he’ll be up to his full new dose. Really don’t like giving a tiny 9 year old all these drugs though, he’s taking 4 different things a day…

Has anybody got any plans for the coronation? We bought some flags for ds this morning and some party food, well he’ll only eat the jam tarts I would imagine, but I won’t 😂 just me ds and dh going to put it on the tv and have an indoor picnic.