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

I am not bothered about him having an unauthorised absence, but I am annoyed at the school's stance. At a nearby school that my nephew attends, they are closing at 1pm and have said it's fine if parents choose to keep them at home.

Just wanted to quickly say hi but will catch up over weekend

@dimples76 tbink a while ago now but meant to say how tough the therapy session sounded, must be so hard to go through also the aftermath. You’re amazing!

@danni0509 swimming sounds tough and I also read your post re wrecking house on a different thread and omg so much respect, and glad to read it improved on that

@carriebradshawwithlessshoes big step for
communication and I know at points you felt funny about non speaking methods but great it’s progressing and hopefully a big step to speaking

tough times here, which is why so quiet, more soon. Happy Friday !

Finally had word that DSs school is closing next Weds, DDs is unaffected.

Im no employment lawyer but surprised that SEN schools are allowed to close given their massive hoo ha over Covid about how they must remain open given pupil needs and the latter has to take priority over a global pandemic 🤔I would have thought if feeling was that strong there would have had to be some alternate provision to enable them to stay open. It doesn’t make any difference for us as DS has a routine hosp appt so I was keeping him off anyway and it’s a non working day. Uno, you mentioned arrangements, are you full time? I will have to adjust my working days (only 3) around any further strikes.

and yes happy Friday to all

Gah, difficult afternoon with ds today and I ended up having a mini meltdown myself with dh A real shame as I was feeling great this morning. Thank goodness it’s the weekend.

Ds’ school is open on Wednesday, that’s all they’ve said. I don’t know if it’s with reduced staff but on Monday I will ask the teacher if she’ll be in.

New day tomorrow Open. Start again for the weekend.

nothing is perfect, school mailed, DS really coming on so they are piling on the pressure… result is he is apparently blowing a gasket 😬😬. Hugely hyper in response to demands. Not dared ask anything of him this eve.

I hope everyone has a lovely weekend x

Yep. Thanks carrie

Sounds like school need to take things a bit more slowly?

Carrie I’m suprised too, given how much ‘routine and structure’ these kids need, that’s all these schools bang on about, but the stance is dropped like a hot potato when it suits the school. Really annoys me.

I’ve had ds teacher on the phone yesterday, he’s locked himself inside a cupboard for an hour yesterday morning and nobody could get him out, then when they did get him out another incident occurred were ds bit a chunk out of another child and the parent had to be called and her ds had to go to the dr and she rung to update the school in the afternoon and he had to have it dressed and he’s been put on antibiotics for a week, he’s done that in the pool Tuesday, caused chaos in the classroom on Wednesday hitting all the kids, then spraying air freshener in kids faces and the 1-1 whose looking after him, she said it’s one event after another.

His teacher said that ds is giving her sleepless nights, shes worrying about how to keep him safe, she’s having a meeting next week and asking my local authority for a review of ds banding, she said he’s on 1-1 all of the time and they don’t get the funding for this, in his class there are 3 teachers and 8 kids so the ratio is sufficient in a special school.. ordinarily.

Ds was on 1-1 for the first 18 months there, they stripped that back when he went back in September as it’s not good long term when they need independence, (I imagine it’s also more to do with the funding) so he was going to have 1 adult to 3 kids with a closer eye kept on him, so I just assumed he wasn’t on 1-1 now and he was just small group and eyes on him but that’s not been the case,

So they want more funding to pay for the 1-1 basically. All this is happening with the 1-1 though so not really sure what it’s going to achieve, maybe they should employ me! 🤣

Another thing annoying me. 2 weeks ago the taxi driver was poorly, (fine, it happens) the taxi office phoned me at 6am and said x can’t take ds today, the back up driver is v busy and we don’t have anyone else to do it due to ds specific needs (utterly ridiculous) so you’re going to have to take him yourself, I wasn’t impressed but did take ds myself, I explained that it’s not something I’m happy about the school being over 20 miles away, also don’t mean to sound bad but the driver gets paid £400 a week to do that, I don’t get paid and have limited budget due to dh not working, so don’t account for fuel for these trips, unfortunately with how much it costs! Yet they don’t offer to pay.

They have phoned again yesterday and said driver can’t work Monday something to do with a car inspection by the council, same scenario with back up driver, no one else can do it, so I need to take him or ds has to have the day off school 😡 twice in 2 weeks now,

Then in December ds PA was sick they couldn’t get a back up PA, driver wouldn’t collect ds without a PA, so which mug had to be ds PA? Me!

All unpaid of course, and just expected of me because he’s my ds.

I phoned yesterday and said if it happens again I’m phoning council transport, not bloody good enough.

I should add, I know he’s my ds, and I do it of course,

but I think it’s cheeky considering the council pays the taxi company for the driver and the PA, but on 3 occasions in 2 months I’ve had to take ds to school in my own car / be the PA. Free of charge, when diesel costs so much.

Ds school is 35 mins away so its 1hr 10m morning same again afternoon, I never chose to put him out there, we had to because he had no school. And I don’t like it dropped on me last minute, or it becoming a regular habit. Which to me at the minute, it is becoming regular.

Ive made it clear I’m not happy, so next time I’m going to go straight to transport, I’m not happy about the taxi saying only her and one other driver will do it due to ds being challenging either, she said the office manager said no one else wants to do the run. How fucking rude!

Bless ds, in my car he watches out the window mainly, or reminds you of speed limits, he’s not even bad in the car anymore, he’s harnessed in so can’t get out.

The back up driver owns the taxi company as well, he’s busy all the time now apparently,

he said to the old Pa last year when he had to take ds, how does (regular driver) drive with him boxing her head in like that. ds was putting him off driving.

I don’t find it very professional to make comments like that tbh. and I’m not sure the Pa was supposed to tell me that, but Surely it’s part of the job, I have to drive with ds doing that sometimes. And I drive just fine.

Usual driver has been taking him 2 years and she’s only been sick the once but she goes on holiday a couple of times a year, so if no one can take him when she’s on holiday they need to sort a solution now before the time comes.

Yikes danni, stress from both sides. Hopefully ds is going through a phase and won’t need such close supervision at school for long. Do they speak to CAMHS or EP re. strategies? Agree the taxi firm needs to come up with a backup plan for when ds’ regular driver & PA are not available.

Things still tricky here as ds still shrieking and shouting at all hours when he’s frustrated with a game (largely). It’s a classic we have made a rod for our own back but hard to backtrack without making things worse.

On the plus side, I have managed to improve my sleep quality by switching back to decaf tea it seems.

That's really frustrating about the transport danni. Maybe you could ask to be reimbursed for the days you take him in? I would be annoyed that they don't have anything in place as a back up.

Sorry you're having a difficult time open. There must be something in the air (or their age?). Ds is also going through a tricky phase. We had another missed day of school last week.

Great about the new progress Carrie, sorry the school seem to be pushing it too much.

Dd is off on Wednesday for the strike and we're still waiting to hear about ds. The school we're trying to get half the school in for two days and the other half in for the other two days but I think things keep changing so we're still waiting to hear.

@carriebradshawwithlessshoes good news on DS but frustrating that by pushing too much, he's got too overloaded. Sounds like my DS and his demand avoidance! Honestly, you even have to be careful with praise because it can be seen as a demand! I work every day but finish early so technically part time. Just applied for a fulltime remote position though so will see.
@danni0509 breathe, this too shall pass! I agree that you should try and claim some money back though, it's not on of that taxi company and also v unprofessional to talk about him like that.
@openupmyeagereyes sorry you're having a tough time too, the gaming frustration is real isn't it! Glad that your sleep is improving though.
@livpotter hope you hear about the strike soon. Ours is staying open unless there are more teachers striking on Wed than planned so we might hear last minute. How wonderful for our kids who like structure and routine ha ha.
DH and I went out last night for the first time in ages, nice to go out!

Well since this morning we’ve had a very calm day, and even this morning was not half as bad as Fri or Sat, thank goodness. Hoping we continue on this trajectory…

Half term is a week earlier than I thought it would be. I’m quite looking forward to it - I like not having to get out of the house early.

Us too! Will be nice to have some down time.

I always have mixed feeling about school hols. So currently I’m thinking do I take leave? Obv I can’t take leave for every school hol and we aren’t away so I kind of feel it’s wasted (as I may need it for a ‘holiday’ school holiday) but then if I don’t who will have them. GP are past having DS for a whole day. Because DS cannot be entertained in the house I spend every waking minute out of it during hols which is knackering. Even on a weekend sometimes we have been out all day and will be coming home and DH will say oh god, it’s only 6.30 pm, another 2.5 hours to bed, we can’t go home yet what are we going to do? I do wish he would just find something to interest him but currently that’s not the case.

Danni, sorry to hear this. I obviously have this wrong but I thought the meds your DS takes are designed to ensure he doesn’t behave like this. Do you think he’s on the right meds? Do you think he’s on the right level? There’s been quite a few behaviour threads of late on here and the more experienced posters seem to always say meds can absolutely control behaviour. I wonder if that really is right? Whilst DS can do stuff that is exasperating like getting in the bath fully clothed it’s not destructive stuff he does and things like getting in a cupboard would give him no pleasure (unlike say chewing something or perhaps climbing) so he wouldn’t do that. Running around and throwing himself all over is different because it’s fun (for him). I don’t think he’s of the mindset that he would do something not fun (for him) just for the sake of being naughty iyswim.

Open glad all is well! Do you have restrictions in terms of timing for screens ie not before x or after Y? I only ask as a friend was on about this last week with her DC. Whilst I may say to DD she’s been on it enough I don’t have times particularly, unlike this friend. I wondered if I should.

Uno good luck with the job application! Let us know!

aaaargh quick question which has been the downfall of our weekend! Does anyone else find their DC wants/ needs to touch them all the time? DS doing my head in, wanting to hold and then pull and twist our hands/ fingers all the time. Even when we are out for a meal he insists on holding my hand under the table and he holds so tight. The finger bending back can be really painful, he has gone to hold family members hands before and the ones that aren’t DC friendly have often snapped at him ow! Don’t twist my fingers! I was cooking last night and he was jumping up just trying to grab my hands I got really cross with him in the end. I assume the so called experts would say he’s seeking tactile input. I tried to give him stuff to fiddle with but he wasn’t interested.

carrie what does a day look like for you when you are out with ds all day? Just curious what you get up to.

I got ds out to the park today which is a win. Hopefully he’ll go out more as it’s warming up.

Ok so yesterday Open. Near us we have a derelict castle, went there, lots of looking and poking around, lots of fields, lots of running and playing tig. Then went into our nearest town, had lunch in a nice Italian. Pottered round the shops for an hour or 2. There’s a big public park there, went there for a bit, got a coffee outdoors. Looked at a few books in a bookshop. He’s very happy to potter about. Came home, we live in a market town, takes maybe 30 mins to walk in which we often do. There’s a Costa there, dS likes a baby Cino then again, a potter around. There’s a river (this is prob v identifying!!) so often we walk along the river. You can walk for 5 mins or 2 hours. About an hour away there’s a good pub for a drink and packet of crisps! So nothing so exciting but this is typical weekend stuff. Otherwise swimming, RHS gardens 10 mins away. Scooting around our town on his scooter or at the park. This is obv not all in one day!!!! 🤣🤣

carrie that all sounds nice, and great to have so much outside time. It seems like ds is much easier to control outside than inside, i.e. he’s not running off constantly and causing mayhem in shops/restaurants. That’s quite interesting, I wonder why.

We definitely need to get out more, I’m hoping this will happen as the weather warms up and ds is more willing. We do all also need and enjoy downtime at home though. We definitely need a better balance.

We are lucky, we we on the edge of the Yorkshire Dales and have lots of picturesque places around. I can kind of see why Open. He loves observing others, he loves just looking around, he loves physical exertion, he loves food and drink. I can see he is exhilarated from running with the wind on his face, kicking leaves and so on. Compare that to being in the house with a pile of plastic toys that he has no interest in and being forced to push a car or stack blocks or god forbid do a jigsaw. His kicks are in all of the former things and even if it’s just pottering with me around a market town the stimulation from what’s going on around him is there. Also perhaps there’s no pressure on him to do anything other than to chill and soak it all in which is DS 1000 percent.

Today I selected 4 toys after school and put them on the floor and said in my most excited voice ok let’s play DS. Honest to god, he stared at them then at me and literally threw himself to the floor screaming and I mean screaming. I was going well you choose DS! Your choice! He was like someone being murdered. In the end I was like ffs and just left it.

Do I have an odd child?????!!! 🙄🙄🙄🙄

I guess it's the demand of playing and maybe not quite knowing how? DS loves board games and things that have a specific set of rules and structure through which to play.

Compare that to being in the house with a pile of plastic toys that he has no interest in and being forced to… likewise being stuck in a classroom I suppose. Probably similar to a lot of our dc.

I think a two pronged approach might be worth trying. A mix of strewing some stuff that you think might interest him, even if it’s only for a few minutes (strewing is an unschooly term for leaving stuff for them to find and explore with no pressure) like it sounds like Uno does, and I do too. At other times modelling play for him with no pressure to join in.

Thank you. Yes I do try and can only continue to try that approach Open. He’s not budged in his response tho since being tiny. I wonder if it’s too late now. I remember reading a poster on here saying she’s not sure her DS actually realises a small world thing represents a big world thing and i would say that too.

Uno, I get that but the whole ok, snakes and ladders, we shake to get a number then go up a ladder to WIN is too complex for DS. He doesn’t I don’t think understand the concept of winning. The truest word was said by an OT once… he doesn’t do it because he doesn’t understand the POINT of it and that’s so right. What is moving a plastic square on a board when you could be kicking leaves and so on. It’s not right of course but it’s how dS is wired .

My DS can be like that too Carrie. Whereas DD's demands to play are endless. Sometimes I can cajole DS to join in with us but he prefers hide and seek, tag and obstacle courses to any board games or toys. My DS is generally much easier outdoors so this weekend was tricky as he was a bit poorly and didn't want to go out.