Primary school auties thread 9 - spring / summer 2022.

[danni0509]

Thread 9.

Links to previous threads below.

For the parents / carers of children with additional needs, most of us have asd / adhd children in primary school, but anybody is welcome to join us to chat x

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

Dh did only half joking ask if we could give him some melatonin before the meal…. 🤣🤣🤣

Open it says to take with or without food (I’d read taking it with food helps with the nausea side affect, so I give him his breakfast then medication / drink at the same time) so definitely doesn’t need to be empty stomach. I will keep trying the syringe but I know how stubborn he is. Kids!!!

ds was awake at 3.40am today. He stayed away until about half 4, then fell back asleep until 6.30, I said to dh fuck this not getting up with him middle of the night. I just kept shouting from my bed, ds go to SLEEP! not time to get up yet. He kept saying put my light on but he has a night light on, I wasn’t putting his main light on or I would of had to come down with him.

I eventually nodded back off, but not properly iyswim, I darent in case he decides to go for a wander around the house.

carrie is there somewhere nearby you can pop out with ds a couple of times so he can burn off energy? Take a bag of toys & books and hopefully it will be one of the ok times. Maybe make a plan to leave if it doesn’t go well, before it gets really hyper?

Awake that was supposed to be, not away.

I changed dh name to Maisys mummy in my phone and got him to text me, hi ds mum, maisy has taken her medication this morning. I hope ds takes his. I showed him the message. Nope! (the things you do to persuade) my sister is still tooth fairy in my phone book, when he wouldn’t go to sleep one night when his tooth had fallen out and I got her to call and pretend to be the tooth fairy! Ds fell for the full thing. I still call her it now! Haha.

Carrie Good luck for your meal. how many peas or knives and forks are you expecting to be thrown? direct him to your SIL (peas obviously) 🤣

My ds is a show up in family company, he grabs my SIL tits every single time, she’s a school teacher, and is quite snobby. She always looks so embarrased when ds is climbing on her, I think bcos she is a teacher she’s got a certain voice with kids and he’s drawn to her. He calls her Katie but that’s not even her name, 😂 she was with my brother when ds was born so he’s always known her.

My mum quietly said isn’t it funny how he grabs her tits when she hasn’t even got any! 🤣 how offensive.

Ds is page boy at their wedding next year, I’m having panic attacks already.

Ha just rushing but that whole story had me in stitches 🤣🤣🤣🤣

thanks open, it’s a rural gastro pub so I’m taking my wellies!!!!!

There’s this on Amazon currently, it’s £12 something on offer.

I’m thinking of buying it for ds. It’s ordinarily for screen time, but I don’t think it’s specific, so maybe used for something else they like that can be time restricted?

Dimples I thought of you instantly with you reducing screen time for toileting etc. Maybe if he wees in the toilet or goes so long without an accident he can earn a token?

Sorry cut my message off dimples, so he can earn additional time for his screen as an incentive for staying dry or whatever.

I don’t know, I’m sick of trying new stuff to be completely honest though!

I feel like having a jumble sale with all the shit I’ve bought over the years that hasn’t worked! 🤣🤣

carrie sorry, I forgot ds doesn’t do toys. iPhone/iPad, whatever works.

danni I have those. We use the timer for brushing his teeth downstairs, that’s it!

I could definitely have a jumble sale too Danni! It might be worth a try. We're still managing less screens but toileting accidents have not reduced yet. DS just pooed in his pants but then told me (which is v rare - he normally just sits in it until I smell it). He said 'I did good to tell you, didn't I' so I smiled and gave lots of praise.

He has been exhausting today, just horrible to DD and his little cousins. He and DD have now fallen asleep on the sofas. I have a cup of tea and my book - result!

Carrie hope that your lunch has gone well. I am a 'lucky' in my family, There are 4 of us and we each have at least one special needs child. So we all get it - obviously we don't all parent the same way so there is sometimes tension but (apart from worrying about them) it does make things easier.

Survived lunch!! Well just about. DS was ok but I kind of get why he doesn’t want to sit for hours on end when he can’t talk/ communicate etc. He was v good at helping MIL down some stairs and safely seated at the table (she’s a bit of a liability) and very sociable with everyone to the extent he can be with his limitations.

Meal ended somewhat abruptly when DD was trying to get DS to sit on her knee and DS waved his hand in the air, unfortunately with his knife in it. It touched DD who then proceeded to scream ‘I’ve been stabbed!!!!!’ Like it was some kind of terrorist attack (in the out in the sticks Dales pub.) Called it quits then and went home…..

SIL and her husband were paling at various parts in lunch proceedings. They are both senior medics and I worry constantly they say to each other what a terrible prognosis DS has in their view once we have left. DH says I’ve got to get over this but it stresses me out no end every time we see them.

carrie well done for getting through it. I wouldn’t waste time thinking about what sil/bil think. Unless they work in that area they are unlikely to have an informed opinion. Even many professionals knowledge seems outdated based on stories here. Great that ds was sociable.

When I read your message carrie I imagined you all in the woolpack for your dinner 🤣🤣🤣🤣

Ds took his medication in his smoothie perfectly, he watched me prepare it all and drunk it no arguments. I hope today is better behaviour wise than yesterday, he was such a handful yesterday!

He slept ok last last night tho, 8.30-6am!

Another thing that’s apparent, on the other stuff, even after 2 lots of sleep medications he wouldn’t go to sleep for ages, sometimes hours! But this one, he has his sleep stuff and goes to sleep with in half an hour of being tucked in. And for that last half hour he’s toned his volume down whilst he’s reading, not ripping his pages out of his books and eating them as he often does 🤣🤦🏻‍♀️

I can’t say it’s making him sleep through as he was up at 3 yesterday morning, but last night he slept 10.5 hours which is NOT a regular occurrence in this house!

We will see going forwards!

He ate loads yesterday too!

6am danni! Were you awake wondering if he was still alive?

4:20 here. Current normal is between 4-5.

Well done Carrie and DS and great news re the sleep Danni - hope that you get some more nights like that.

I took the children to a Splashability session at a nearby pool yesterday. DS was observing/asking questions v loudly about other people in the pool, eg asking a Mum of a disabled woman if she could talk etc., why a man was making strange noises (ironically quite similar to those made by DS). Hopefully he did not upset anyone, he barely paused for breath. When we were getting our shoes on afterwards he was saying hi to everyone and if they didn't respond asked me v loudly what was wrong with them.

I don’t think he would of offended anyone dimples. Im certain the parents would of understood. I think if they have experience of kids with additional needs, most of the time they are aware it usually comes with no filter.

Ds is very similar, he mimics noises of other children at school, (drives me fucking mad! To hear this certain noise on repeat) it sounds like he’s taking the piss, but he wouldn’t know how to do that, he asks really awkward questions too, like why this, why that. sometimes I think, NO you did not just ask that!! 🤣

A member of staff in his class left last week (they were warned in advance, had a small leaving party for her on Friday) ds cried as he got in his taxi, she walked him to the taxi, and he said to her, these are my happy tears, I’m pleased you are leaving!

Hahahahahaha! You just can’t take offence can you.

open I usually stand by his bedroom door and listen quietly for sounds of life, but there is a creaky floorboard on my landing which vibrates through the whole of upstairs if you stand on or anywhere near it! (shitty new build, like the house that jack built!) so I don’t bother now. I know he’ll surface. 🤣

Oh Danni that really made me laugh.

I have just had my Mum and sisters & families around for brunch. So there were 7 children (including 5 SEN) and 5 adults. Absolutely chaos my nephew asked me as I was running around why I did not look happier. Catering for 12 including a vegan and my sister's kids who are v limited in what they will eat was not easy. He then told my sister (his other auntie) that he was v happy she and her family had moved out (they were temporarily living together whilst building works were going on) as he does not like her boys.

The house is so messy after the cousins' rampage and I am trying to motivate myself to sort it.

Hicall. DS heightened at school apparently abd I've had to put my aged cat down today 😞
So numb and miss him so much already. Have to explain it all to DS tonight.

So sorry to hear that Susan. Do you think DS may have been worried about the cat and getting upset/ stressed about it all?

I’ve just had ds school on the phone. 😣

Ds has been on 3-1 support today, classroom trashed, doing all that he did when he started more or less. Missiles at peoples heads, weeing on every Tom dick and Harry, spitting, swearing, no work done, just basically on a mad one!

He said he’s really worried for his safety as he’s intent on hurting himself and others and his behaviour is really extreme. He’s had to be out of the classroom all day.

He’s phoning me again Friday.

Taxi got back, said his teacher just said to her, we are going to reduce ds hours 9-11am for a couple of months until his new medication is working, just as a heads up, I’m going to talk to mum about it.

Like fuck you are mate! I just sent him an email.Taxi is doing another contract at lunch, I don’t have a car, and I told them I’m working now when he’s in school, so I’m not agreeing to it.

what a fucking joke!

Sorry about your cat and ds at school x

He either goes all day, or he doesn’t go at all.

Just say you can’t meet his needs (his annual review is in 5 weeks) I’ll take him out and find something else.

cant live like this forever more, something happens and ds goes mental and they reduce his hours, they’ve done it for a year and his old mainstream did it for 3 years!

Load of shit back on an email about ds not managing school, and they need to take a step back, change the plan and gradually ease him in and increase once his medication is taking effect in 2 or 3 months when the new stuff has had chance to work with his adhd. (they said this last time and a year on we have only just gone up to 4.5 hours, which isn’t even full time as it is!)

His teacher has had a meeting with the senior leader team and they had said this was the best plan going forward.

AFTER 1 DAY BACK.

I just messaged back, I didn’t realise the condition of attending school was if the child was medicated or not? I can’t remember seeing that policy anywhere?

I’ve made it VERY clear, I’m not in agreement, I’m not accepting it, they are just going to have to get on with it and use their super specialist skills they do all the training for,

what do they think I have to do?? Sorry ds, you’re too hard work today I can only look after you for 2 hours! So on your bike!

(It’s not about ds, it’s about his shit schools inability to cope and manage challenging kids… in a challenging behaviour school)

How can they just drop his hours every single time he’s a bit naughty.?

Oh Danni, I am sorry to read that. I know that you investigated a lot of different special schools in the past - do you think any of them are possibilities?

I had phone call from trainee Ed Psych who saw DS last week (with a qualified EP). Unfortunately he seems to have made a rather overly good impression on them: 'cheerful, curious, engaged, chatty'. DS can be all of those things but he is not like that in the classroom with 29 other children, there he presents as anxious, hyper-vigilant and distracted. I asked if they had observed him in class - nope. Just DS, his TA and the 2 EPs in a quiet room. DS loves adult attention, he would have been in heaven. Definitely right for assessing his cognitive strengths and weaknesses but not so much for seeing the barriers to learning. I had a bit of a cry when I got off the call, I am so tired of fighting.