Primary school auties step into Christmas and the New Year - thread 8

[openupmyeagereyes]

New thread.

This is the continuation of the thread for parents / carers of autistic children / children with additional needs. Most of us are parents of children in year 1 / year 2.

Links to old threads

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

I added both of those books to my basket. Such a sheep! But they do look interesting and Luke Beardon is well respected.

danni I’m always getting asked by Amazon if I need to upgrade to a business account 🤣

I’m the same open anything anyone recommends I buy! 🤣

Well, DS got so wound up and hyper this morning, I asked him and he finally admitted that he didn't like the sleep fairy's letter and it was really worrying him! So I have said to forget it for now, bless him. Just read those reports of a family of four being shelled as they tried to escape in Ukraine, mum and two kids didn't make it, girl was only 8. I can't stop crying. So in the grand scheme of things, I might just hug my DS a bit closer tonight.

@openupmyeagereyes I get those emails about upgrading to a business account too!

Magrat why don’t they have a ‘no thank you’ option?

It’s good that he told you how he felt.

I saw footage of a bus of orphans being evacuated 😭. And Raab said today it could last months or years. Poor people, poor medics. Aside from the massive human tragedy it’s an environmental disaster too, senseless destruction. Words are not sufficient to describe what’s going on there.

They bombed a psychiatric hospital too with severely mentally ill patients inside. Loads of patients were unaccounted for the last time I checked for an update!

Disgusting.

Mad vlad, I don’t know why someone on the inside doesn’t just blow his head off. He surely has to be the most hated man on this planet.

I’ve just laid ds down since he’s been awake since 3 o clock this morning. He’s not sounding very sleepy though.

Yes I saw that danni. Children with cancer having to hide in basements between treatments. There must be elderly people too frail to move. The list goes on and on

Good comeback from German ambassador in South Africa - ‘we’re kinda experts on Nazism’

I found this earlier, the nhs prescribing framework that CAMHS follow for adhd meds. The things you find when you get caught down a google rabbit hole, dr danni in da house

That literally is what my CAMHS use too as it’s how he roughly explained how they work through the meds at one of ds’ first appointments.

Shout out to carrie to have a look since your ds takes adhd meds too.

Ds is on the first line treatment in the green box. So lisdexamphetamine is next on the list, which I have read about tonight in that book carrie (read the full thing already!) it can be opened and mixed in orange or water and is fully dissolvable, and the third line dexamphetamine which would be next if the second line doesn’t work can actually be prescribed as liquid. (Which would be a massive help in getting ds to take his medication)

The second line which is what I want ds to try can be helpful to those where methylphenidate has not worked (in ds case) and reading that book, has confirmed methylphenidate definitely has not worked! (6 months he’s been on it now) so I’m arming myself with my framework and requesting a change.

Carrie on one of the pages, I’d have to look which page number - can’t be arsed to go back upstairs lol, there’s a boy called Owen who had been on methylphenidate for a while and it had no effect whatsoever, he went on to lisdexamphetamine and it was successful.

Obvs it’s still a stimulant and I wanted to try a non stimulant for ds anxiety, but I’d prefer to work my way through the ‘list’ so we aren’t excluding meds that could of actually of helped if we had tried them.

Don’t want to run out of options!

Plus his anxiety is bad regardless. I don’t think it’s made any worse because of his adhd medications.

It’s great that you have the framework to discuss with the doctor and a plan to work through.

We talked to ds about Ukraine yesterday evening. In hindsight not best to do it at bath time but he slep ok and was fine this morning. He was a bit worried though (naturally) and said I shouldn’t have said anything. I keep reading that it’s better for you to discuss it with them rather than them overhear snippets or be told something in school that they don’t understand and worry more. I’m glad now that it’s done anyway.

I watched the footage of the Sky news team’s ambush. They must have been terrified.

I see cbbc newsround recommended for kids open

www.bbc.co.uk/newsround

I’m not sure if it would be suitable / too old for your ds to understand?

I think it’s the headlines delivered in a more sensitive / friendlier way.

Ds school are doing a Ukraine appeal today and have asked for a list of items to be sent in for the refugees. Me, my mum and my sister have sorted a big bag of nappies / wipes / baby food and adult toiletries, so I’m sending that with ds taxi today. My sister has a baby so she has sorted all of his blankets and sleeping bags out too, poor kids!

Ds is fuming he can’t have the baby food, I explained they are for the children of Ukraine and he didn’t have a clue what I was talking about so I haven’t explained anything further.

danni we took bags in today too which is why I thought it was a good opportunity to talk to him about why we were doing that. I think even the kids coverage he would find scary. I had to reiterate that we were safe (obviously I didn’t say for now!) and that it was far away.

Thanks Dr Danni!!! I like that. Where I get confused I guess is if there is a distinction between something not working and side effects. So for DS they jumped straight to non stimulants as they felt the stimulants collectively were too heavy even though they had only tried one.

I do find it very confusing!

I think carrie maybe because of his repetitive mouth movements and school saying he was zoned out? Maybe they thought the stimulant didn’t agree with him? I’m not too sure. Maybe they should of tried the other to begin with to make sure. But if this one is working for your ds maybe it was a good move on their part.

With ds he’s no different! You wouldn’t even know he takes anything at all. So bizarre.

I’m not happy today, ds has snapped his taxis number plate off and clean in half. Like fully holding it in his hand in 2 pieces. So idiot here has to pay for it (£20) I’m happy (well not happy) to pay for it as he shouldn’t have done it. But where is the line drawn.

He ripped her taxi licence in half last year and it was £50 to replace but she didn’t end up paying for it as the council said she could tape it back together and that would suffice. Had she of paid for it I’m sure the cost would of been passed to me.

I’ve sent her a text to say I’ll pay for it after the passenger assistant made a comment about ds using his pocket money! ie we expect you to pay for it (which I would of offered anyway) but my Dh is like well no, she’s a taxi for disabled kids, things happen. Surely she’s insured etc etc.

Never mind, I’ve got the money to pay for it. But what will be next With him anything is a possibility.

I’m also not happy with ds, when I wrangled him in the house he told her he’s ripping the front one off tomorrow!

I’ll chop his fingers off! 🤣 I don’t have an endless supply of cash to replace things he breaks that’s for sure…

What he’d done is come around the back of the taxi to get him into the house and he grabbed the number plate on the way past and pulled it and wouldn’t let go so it snapped off, he makes a beeline for it all the time.

I’m not going to keep replacing it though. If it happens again she’ll have to phone the office and claim it from them or something, I don’t know. Do you think that’s fair? I appreciate it is my ds causing these problems, but it’s not exactly him paying is it.

And now he’s done it once….

It’s like when his teacher phoned and said he’s ripped the toilet pipes off the wall caused a flood and we’ve had to have an emergency plumber visit or when he broke 3 tables in a week and they had to put them in the builders skip, he said as a school we can’t afford to keep paying for this. Made a right song and dance. I didn’t offer to pay then, I expected them to sort it via school / insurance or whatever it is they have in place for this sort of stuff.

He snapped his teaching assistants glasses at his old school and his teacher said they cost £150. I think genuinely by how she said it to me they wanted £150 off me.

That’s what I mean when I say where is the line drawn.

He’ll break things forever more! He’s a super trasher!

When he’s older It won’t be lock up your daughters, it will be lock up your personal belongings! 🤣🤣🤣

Ffs, always something!

Must be stressful danni.

Ds has had two mornings when he's walked straight into class with no anxiety and stayed for 2.5 hours

That's great news, Open

Danni how stressful - I really don't think that it is on to expect you to cover damages which are incurred when somebody else is meant to be looking after him. I guess it's a bit of a grey area when on your drive. However, I think that most people would not expect you to pay for damage caused by your DS.

I paid the money this morning (begrudgingly). Now I just think she’s cheeky for taking it, she has insurances to cover for this kind of thing. I’m such a saddo I got my mum to phone my uncle who is a taxi driver and he said god she shouldn’t of done that! The only exception is if an adult is sick in the car then it’s paid to be cleaned but not for children.

When she bought him home she said ds had been threatening to break her car all the way home so the passenger assistant said well if you do that ds you’ll have to go in scary Stuart’s car and his car is noisy and you won’t like that.

I said, why on earth did you say that? Why did you call him SCARY Stuart? He has to go in Stuart’s car when his normal driver is off. Why would you say that to him! Absolutely ridiculous because now when Stuart has to take him I’ll have issues getting ds in the car. It’s hard enough as it is!

She didn’t see an issue with what she said, I pointed out that scaring him into behaving will not work, he does not work like that, and you should never use an example of something that will cause ME problems later down the line. I made it VERY clear I wasn’t happy with what she said.

Like the time my dad told a terrified ds not to move when I was cutting his hair or I’ll cut his ear off. (Ds who’s never been to the hairdressers and it’s such a battle to trim his hair at home, took me years to even let ds allow me to trim it)

Why are people really thick?!

open I’m so pleased he has been going in x

That is frustrating @danni0509. Although I kind of get why people don't "get it". Sometimes when I get frustrated I find myself saying things to DD that would work on a "normal" child but I know will actually make things worse. And I really do know better but I just have my crap days. I always feel horribly guilty afterwards though so it's disappointing she didn't even get it when you explained it.

Great news that DS has been happy going in @openupmyeagereyes!!

We seem to be going through an anxious phase at the moment (maybe we always are? And it just changes what it looks like over time...) I really hope this is the right school. It's definitely a challenge for her, especially with the commute, but I find it hard to imagine what would be better. Basically all the "enrichment" stuff which they are really good at is good for her (she's so excited/happy after if she manages to do things) but also massively stressful for her, so it's always a bit of a knife edge. We need a school that doesn't exist basically!

I know what you mean Light. It’s easier to say what isn’t right for them than what is. Maybe even with our NT children nothing is 100pc right, there’s always ups and downs. I just feel that DS needs so much more specialist help that I’m nervous about getting it wrong.

Open that’s great!

Danni call me a simpleton but when I read your first post I thought well it can’t have been affixed properly! Surely no small 8 year old has the strength to detach a car reg plate? They are often still on after major collisions! So I reckon in part it’s her own fault.

Things not great here. I think I said it was felt that the stimulant meds were potentially too heavy and school were saying he was too docile so we switched to a non stimulant. That’s all well and good but apparently it takes 2 months to get into their system to see any benefits. However side effects are seen immediately. So we currently have hyper behaviour still and constant lip licking/ mouthing, his mouth is red raw. May be coincidence but in the last week he’s been up all night twice. We have not had this before. So don’t know what to do really. Have an appointment tmrw to discuss.

The school issue remains. I know I’ve not updated recently. So in summary he has a place in Sep with a really good SS. We haven’t accepted as have been trying to explore some hybrid options (units) but long story short that’s come to nothing. One in particular was really disappointing as they had been so positive about him but then for no obvious reason (they hadn’t even met him) changed their tune and started talking like if he wasn’t only just outside the scope of a typical MS child they would ask us to remove him. Well I can’t risk that.

So it looks like we have Hobson’s choice !

You are going to say well what’s the problem with the SS? 😁. That’s a fair question. I suppose I’m nervous of a big general SS. I know all of you have worked to get your DC into ASD specialist provisions which sound quite niche and right for them. This isn’t, it’s an all singing all dancing SS and I’m just not sure. It seems a huge step from MS.

But then I think what I’m really wanting for him (a little unit affiliated with a MS with SAL expertise but which isn’t put off by his other issues such as not wanting to write/ unreliability on the toilet/ poor attention) as Light says just doesn’t exist.

I’m also worried (I’ll shut up then, really) that a SS is really more for children with primary LDs. DS is bright but I’m worried that will just go by the wayside in a SS (whereas many ASD children are extremely bright hence I assume ASD schools are very attuned to that and don’t lose sight of academic learning as well as life skills etc.)

Just lots of worry but no school options really!