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

liv I sat around a lot with him sleeping on me! When he was about 6mo he’d stay asleep longer when we got back from a nap walk which was nice.

Well done to your ds

Hooray mini @livpotter ! It's so great when school recognise their achievements.
Thanks all,DS' temp is better and he's walking around again, but still pretty wiped out with it. We have pop TV on to cheer him up! Going to try and put the euro vision semis on in a bit. Does anyone else watch it? I can't wait!
DS would never settle either unless I was moving, definitely a sign but what did I know then! Bottle fed but 8 months before he slept a good chunk in the night. What upset me with that thread is just how hard and judgy those hard mums are, I guess maybe it's because they feel a bit defensive as others might see them as being heartless. Their poor tiny babies, just feeling left, no wonder they stopped crying as they learned not to bother. I just think it's so sad, especially in those early few weeks. I lived in a carrier once DS was old enough to support his head. I loved it too. I baby wore until I couldn't as he is so tall, even at just over 2.5 his feet were almost at the floor when I wore him. Makes sense, he is now a few centimetres off my height aged almost 8!!

Hope that the recovery from chicken pox is swift Moomin

Congrats to your DS Liv

It feels like it's been raining here forever but today the sun is shining and everything feels better. My BiL took DS to a cookery lesson with his cousin. He appears to have had a great time and made a Swiss roll which was delicious. I have very recklessly poured myselfa glass of wine which I am enjoying on the sun lounger whilst the kids play. I probably have a maximum of 10 mins before it all goes wrong but I am savouring the good times whilst they last.

Planning to watch a bit of Eurovision with DS later

Congrats Liv that’s brilliant!

wine in the garden too Dimples… are us northerners getting the best weather?! Will watch a bit of Eurovision too.

It’s been grey and chilly here so I think so.

Compiled my screaming abc tho a bit better today. So far;

1. in toilet
2. whilst waiting impatiently for us to get ready to go for a walk, standing at door
3. whilst on the walk
4. in a v busy shop while Dd was faffing over choosing new shoes.

but more short lived than it has been apart from (4) when dh had to escort him out!

Just as we prepare for our HT hol on the south coast Open 🤣🤣☔️☔️☔️

Of course it all went pear shaped later. Culminating in DS locking DD and I out of the house because I had to put the bouncy castle down as DS was not playing safely. Only got back into the house by threatening to take the bouncy castle to the tip. Then DS went upstairs and has wrecked the curtain pole in his bedroom. Roll on his bedtime

Oh no…?! We have a massive trampoline, zips up well above the height of DS. I can recommend. Sometimes I say to DH can we just leave him to sleep in there?

more wine dimples, more wine. Can’t say more…

Oh I can. A family sized bar of cadburys fruit and nut. Plus wine, obviously. X

Sadly Carrie I just had a cup of tea

How was everyone’s weekend? We went to a NT place we haven’t been to for a while, had a lovely walk and play. Ds actually got off the swing three times to let on other children who were waiting for a turn - there were two swings and none of the other children did this. I was super proud of him. He was quite taken with one of the girls there, it’s a shame that there are no girls in his class.

We also had another walk and play with a friend of his that went really well.

He’s been awake since 3:20 today so early night for all of us. We’re watching Ted Lasso, anyone seen it? It’s so funny.

I’m having real agg with ds at home, but more so at school.

This was just yesterday.

He’s choked his friend ramming compost down his throat, (he then said friend was luckier than him as he ate compost that ds made him have against his will so ds rammed compost down his own throat to be ‘even’ ) - he has a massive issue with people being ‘luckier and unluckier’ than him. So he thought x was luckier than him because he’d had compost.

He’s used every class object as a weapon and they’ve had to evacuate the class.

He threw a potato and his teachers head.

He needed 6 adults to take him to the taxi. According to ds they dragged him. More on this in a minute.

He swore all day, every other word was a swear word. Fucking, bullshit, arsehole, fuck you, etc etc.

He kicked the taxi door and dented it with his peidro boots.

I had school on the phone again at 3.15.

Taxi has said this morning, (I didn’t get chance to speak to her yesterday as she was understandably not very happy ds did that to the car so literally chucked him at me and left) she’s never seen a child be so mandhandled before, she said that all the staff were restraining him on the car park and all the other taxis and buses were watching. She said she went home and couldn’t stop thinking about it. Then the Pa said the same!

Funny how when I got a call at 3.15 his teacher mentioned everything but the restraint and manhandling. He’s got purple finger marks all over his bloody back!

I understand they have to restrain in dangerous situations, (he was hitting all the others getting on their buses and kicking all the vehicles) I myself have to occasionally be quite abrupt in stopping him hurting himself and others such as grabbing him and / or holding him tightly,

but 6 adults against a 9 year old. ? Why has she failed to mention this to me. Why has the taxi had to let me know what she witnessed.

I’m not impressed, I’ve asked for a call off the school.

That is really bad danni. Do the school have a restraint policy and have you signed an agreement to allowing it? There should be a risk assessment plan in place and any restraint use should be agreed between you and the school.
I would definitely be complaining about this. It must have been very traumatic for ds not to mention the other children/adults that witnessed it.

Do you think his behaviour has anything to do with increasing the medication?

That’s what ds school do though, tell you what they want you to know and don’t mention what they don’t want you to know.

Im just at a loss with it all, ds is stuck in this negative reaction state again, everything is done for a reaction, he’s seeking it 24/7. We’ve been here before and it’s grim. He’s bloody dangerous when he’s like this, it’s been going on a few weeks but even worse the last few days. I’ve got the school constantly on my back with it again, I’m getting calls every day, emails too.

I want him to break up next Friday and just try have a weeks reset and see if it helps. 😒

Sorry liv cross posted. No I’ve never given permission. Never signed anything. It must of been traumatic bcos the taxi and the Pa said they couldn’t stop thinking about it last night. I didn’t know this last night at all! Ds said they dragged him to the taxi when he got home. He said 6 people,

His teacher at 3.15 said ‘ds was very tricky to get to the taxi’ and we needed a lot of backup. That was literally what she said.

Yes I think maybe the extra medication isn’t helping (2 weeks I think he’s been on the new dose) but we were having similar problems prior to the extra meds as that’s the reason they got increased.

im just going to have to hope it all settles down. He needs to get out of this negative circle he’s in.

My dad rung him for a chat last night, on FaceTime. He loves my dad and my dad sends him £10 a week pocket money, so my dad had the idea of ringing and reminding him that the £10 wouldn’t be coming this week if I told my dad anything else. So ds called him a fucking idiot, spat at the phone, told him to fuck off and cut the call off! 😳

Any ideas what I should do?

Punishing ds doesn’t work, the more you punish the more anxious he is. I don’t want him even more anxious than he is, so I’m not punishing him, but the same time I don’t want him rewarding (like pocket money, treats etc) when he’s being as bad as this.

If I tell him off, he thinks I hate him, and cries that nobody loves him, etc. He genuinely is so emotional and sensitive. I feel genuinely sorry for him. He’s such a complicated little creature. And I do imagine being that small and confused and put my self in his shoes and that’s why I feel so sorry for him.

I have to tell him off of course, or how would he ever learn, but I do it in a more of chat kind of way, lay with him and tell him xyz. And why that’s not good and so on.

If I shout or ban him from everything he gets so anxious, he will be pinching himself , bites himself, destroys all his stuff, and look really anxious and he become SO obsessive over being told off / shouted at. So I’m trying my best not to do it, as I don’t want to exaggerate anything he’s feeling.

My mum said something the other night, along the lines of, I’m not harsh enough, but honestly harsh isn’t the right way forward I know 100% it will make ds worse. But then it makes you feel shit and wonder if he’s like this because of me. But I’m sure he’s like it becuSe of his conditions. I don’t think I do badly, but it’s just so hard to know what to do isn’t it?

Basically what I’m trying to say, is I need a god damn manual in raising him. As it’s not going to plan.

Perhaps an overly simple question danni but if following that call with your dad he didn’t send the money, would DS be bothered? Would that (or anything) be enough to change how he is? Or do you think it’s completely out of his control?

in our last conversation you said DS was limited in what meds he could have as he wouldn’t do a blood test etc. but don’t you think that if there was something that could calm him down then the drs really have to work around that, even if they sedated him first? I know that’s a million dollar question (as in would it help him) but assuming there was something then it’s really incumbent on the drs to get to a place where he’s taking it, isn’t it? Surely that’s preferable to what you are describing now?

maybe he does need the break to short circuit things, it’s worth seeing.

This morning 5.30am he came into my bedroom, with a lush sleep spray he’d got off my bedroom floor, I was still in bed and he started spraying it in my face saying HAHAHA mummy HAHAHAHA. Genuinely overjoyed that he was spraying it in my eyes.

I immediately jumped up half asleep / half blinded from spray and went firmly ‘DS STOP’ grabbed the spray off him, he started crying and then on and off cried until 8am. my mums told me off, I can’t cope with my life my mum has ruined my day I need to restart my day, I need to restart my life, please let me restart my day, I can’t be told off etc etc etc he would not stop banging on,

He’s got massive MASSIVE issues with authority. I do genuinely believe this is his biggest trigger at this present time, he cannot cope with anything he perceives as telling off no matter how minor you do it.

What do you do though, ?

No bother ds, I don’t need my eyes anyway, spray a bit more?

It’s fucking hard work.

Our messages crossed there danni.

im sure you aren’t too soft. Fwiw my view would be that his meds aren’t quite right at the moment. I know how hard it is to get them right but maybe that’s got to be the focus? I do find it hard tho to believe that drs and ss haven’t seen this a million times over?????!

danni *If I tell him off, he thinks I hate him, and cries that nobody loves him, etc. He genuinely is so emotional and sensitive. I feel genuinely sorry for him. He’s such a complicated little creature. And I do imagine being that small and confused and put my self in his shoes and that’s why I feel so sorry for him.

I have to tell him off of course, or how would he ever learn, but I do it in a more of chat kind of way, lay with him and tell him xyz. And why that’s not good and so on.*

I think that under the circumstances this is the best thing you can do. In the moment that something's happening, you block, try and prevent etc. use the minimal force that you can to prevent what's happening and not say too much. Try and keep your voice and manner neutral and tell him no and why. Then when he's calm you discuss it and what he can do instead etc. Natural or logical consequences are ok but punishment is counter productive. It's not easy at all, but hopefully this is a phase that eases off again soon for you. As others have said, maybe medication is making it worse but it may settle - I think it takes time?

Big hugs, it sounds really trying.

Do school or cahms talk about things like CBT? Do they offer that as a service? I’m sure there’s an appropriate response to his comments around being told off/ why etc, just not what we would probably think to say.

Carrie Ds won’t have any medical treatment at all, I don’t think they’d routinely sedate him to do a regular blood test anyway, and even then how would they sedate him, I honestly don’t think it would be possible. He had sedation once before when he was 4 (when he wasn’t aware of the world and didn’t worry so much what people were going to do to him as he had very limited understanding back then) he had Midazolam and it didn’t work anyway! The dr was like I asked for the child to be sedated, the nurse said ‘He has been sedated’

Another time he split his head open and they couldn’t glue it, they sent him home with a whopping gaping hole in his head to heal on its own, he won’t let the dr listen to his chest or take his temperature, he won’t visit a medical setting, he thinks they are going to do a covid test on him. He always has ingrown toenails from tip toe walking and they can’t treat them he just has to have antibiotics and I soak his feet in Epsom salts. He went to podiatry and she said I can’t sort them out, I’ll send the dr a letter to prescribe antibiotics when they get infected.

It’s such a nightmare getting him to his routine appointments at the hospital, I have to continually say ‘no covid test, no blood pressure, no touching ds, just an appointment to chat to mummy’ He makes himself sick with worry, like actual vomiting.

They still have never taken his bp at his appointment at the adhd clinic, they have had their learning disability play therapist in to help and I stood there thinking, yeah bcos you are going to be able to help. (She couldn’t)

I dread when he needs actual medical treatment, thinking about things like that keeps me awake at night.

He won’t have the flu spray at school, heck he won’t even have his photo taken on photo day.