Thread 12. Autism and any other additional needs.

[danni0509]

Thread 12.

For parents / carers of disabled children, autism, adhd, and all other related neurological conditions. Most of us have children in primary school. But everybody welcome!

Chatting about anything and everything related to SN!

Just typing quick as ds needs to get ready for bed. I’ll link the previous threads later.

x

@danni0509 indeed sounds tough, are you due a meeting with CAMHS or can you schedule ad hoc? The away day picnics sound good occasional but totally understand you feeling like that’s not what school is about. Hope you come into an easier phase soon.

im not having a great few days - crap sleep, crap meltdowns and to be honest I just feel like a rubbish parent. So much screen time bc I don’t know what else to do (and then that ends up being for DD2 too) and I know I need to be doing more on Pictos etc and I haven’t for a while for no good reason really. Find it hard to find enthusiasm even on the better days. Probably need antidepressants tbh.

Hopefully a better day tomorrow!

Ahna ask the GP for help if you need it. There’s no shame in it. That level of sleep issues would be hard for anyone to cope with

dimples I hope you hear soon.

Ahna I feel bad about screen time and younger sibling too. Sometimes needs must

Danni I was hoping you were going to say that things had calmed down after the good day out with school. How is he at home? Same as school or better? I wouldn’t worry about not doing any schooling at the mo as I don’t think any of them are much, DD has wound down and god knows re DS. I know I’m a cracked record on this but I can’t believe school are so hopeless. Ok so DS may be a challenge but I can’t believe he’s the only or worst challenge they have ever faced in their history. I’ve witnessed a few episodes at school lately (moved on and not wanted to stand and gawp) but surely this is their bread and butter, par for the course? Maybe not with all kids but some? It would really annoy me.

Ahna, again I’m playing my cracked record and I know you have said DDs drs aren’t keen on sleep meds but you do know there is so much out there that she could try? Beyond melatonin? Can’t you to the relevant paed/ dr and cry/ say it is driving you to insanity/divorce/ family breakdown/ say you are going to have to ply DD with something terrible ordered online unless they help you/ her? I did all of these with DSs unhelpful paed and suddenly lo and behold a bottle of alimemazine is prescribed which has knocked him out ever since (not always but mostly). With DSs paed until she genuinely thought I may throw myself off something very high she was totally unhelpful but it’s amazing how that turned around after that conversation.

Open, daft question but what does the play therapy involve, do you know? I’ve always been curious. Given that DS doesn’t play (with anything) I’ve never thought it could help him but maybe my interpretation of ‘play’ isn’t what it’s geared up to. We did hire someone who purported to be one years ago but she seemed to want to explore my feelings for DS and then my marriage and then sit and stare at DS to get on his wavelength. I’m sure that isn’t the definition of the therapy tho! 🤣

Dimples, may DS be wearing out as end of term is nearing? Does he take vits? The usual stuff?

School have raised hyperlexia with me re DS. Hadn’t heard of it but on googling it sounds very him. That all said there’s a lot of labels thrown around and not much done imo to really drill down to move him forward in school. There’s a meeting tomorrow but I’m losing the will to live with them at the moment so am sending DH. DS at least at home seems calmer but who knows what trials and tribulations he is having there. I really don’t care I just want them to do their job help him progress. I’ve not bowled over by that so far but again I’m a cracked record on that so will sign off here! 🤔

carrie it isn’t anything like that. It’s based on the idea that children process their feelings through play, and that being able to do that in a safe place with a trusted and trained adult means they can work through any issues that are troubling them. It’s akin to talk therapy in adults. The EP said something like it’s like everything falling out of a jumbled cupboard and then being put back in in an orderly fashion - something like that anyway. The therapist did call me for a chat before they started but it was just background questions.

That sounds really interesting. I assume though that the child must have some play skills first to be able to access this. It’s something DS has never acquired despite our great efforts to teach him. He just doesn’t ‘get it’ (beyond playground type play).

Maybe, I don’t know enough to say.

How did dh’s meeting with school go?

When is enough enough for contact from the school? Can you give me your advice please. Is daily emails complaining really acceptable?

I’m going to copy and paste messages from this week, Monday and Tuesday. I won’t screen shot and put them on as school logo / class teachers name / ds name is on the emails, I’ll edit the bits with names.

But this is they type of messages I’m receiving EVERY SINGLE DAY.

The teacher won’t leave me alone.

Hi.

I hope you are well. Just to let you know x had an unsettled afternoon and hit out and kicked me as he was upset. He calmed when x came and we swapped staff and he went for a walk.

Thanks

Good afternoon,

I hope you are well. X was getting upset just before home and hit out at me, kicked me and said

Sorry I posted before I finished

He said he hated her was spitting and they couldn’t get him into the taxi etc etc,

I get about 5 emails a week and at least 2 calls.

Never anything positive, it’s always negative.

Hi all.
@danni0509 hugs for it being so tough. Maybe your DS just needs a radically different type of school, but no idea if that exists or how easy to access!
@carriebradshawwithlessshoes DS has play therapy, they do it in little groups at school. I'm not quite sure what it involves but he says he likes it. His play skills are developing but he very much needs to be in control so it's more difficult for him to play with other kids who also need control!! He prefers board games as they already have a concrete set of rules. Or games he makes up himself.
@Ahna65 sorry about rubbish sleep!
@openupmyeagereyes hope all going well.
@dimples76 I hope you hear soon too.
We are pootling along. Went out last night to a play and going to the theatre in London soon, so I feel like a bit of a social butterfly! V unusual for me these days! DS is still enjoying his horse riding, teacher tells me how much it calms and regulates him. I would never have thought of that, so I'm really glad he can have this opportunity.
I feel like we are hurtling toward the summer hols. I should find out soon about DS' class for Sept, but it will change anyway (pupils if not teacher) and I'm not really looking forward to that but nevermind!
I'm getting so worried about these submarine people, isn't it crazy?! Anyway,happy longest day everyone. Darker nights from today!

Ds went to an air show last weekend, he went in an army tank and held an army gun and waited patiently for his turn and did fab. We went for 6 hours on Saturday and he coped really really well.

I sent his teacher an email Sunday evening and added 2 photos in of ds doing said activities, I said he’d done fab (I also like to mention it since they say they don’t cope taking him on trips, but me and his dad do it most weekends, so I like to subtly show them 🤣)

She never replied to that, just sends me emails complaining.

If you say anything positive they will always ignore it but focus on the negative.

I get an email at the end of the week with both positives and negatives, and emails on other days if she's had a particularly bad day. Though DD is in mainstream so hitting an adult usually results in a suspension.

I mean reading those snippets of email back they don’t seem too bad to be contacting me about, but you have to understand I get one every day, blow by blow accounts of what he’s done wrong, then she’ll ring me twice over the week moaning for good measure. Last week he’d poured bubble mixture on x, he’d done this he’d done that. (Some of the things she’s rings me about are so pointless)

I’m really fed up of being hounded.

Sorry @danni0509 crossed post.
That's totally unacceptable. They're not supporting DS or you with all these negative communications. Email your LA caseworker with these copied in and mention the frequency. Your concern is that they are not putting the right support in place. Also I would explicitly ask the school what their plan is for DS? Zones of regulation? What do they do when he gets yellow or red zone? Shat could work better etc. If they don't reply or remain negative,tell that to your case worker. Literally, I would give the teacher until the end of the week to reply positively, and then talk about the impact of this negativity with your caseworker.
If you want to,I think there's enough evidence there to call an emergency review. All this negativity could be making your DS' behaviour worse as he's trapped in a negative loop.
Is it just not the right setting?
Hugs @danni0509

@Jules912 He used to hit the adults all the time at mainstream and never once got excluded.

They just illegally excluded him instead for 4 years only letting him attend part time.

We had the same thing with mainstream @danni0509
The thing is, part of your DS' needs is that he is impulsive, so they should be putting support into place for that. And if DS can do an army day out, it rather points to school staff not using the techniques that work best for him...

Thanks @MoominMamasTribe funnily enough he only had his annual review last month! 🤣 she drained my soul just as much on that, I think i posted on here about it.

I deffo think his class teachers are shite. (not shite as in shite but shite with ds and his specifics, he needs very careful managing)

If you see that sort of email above, he went for a walk with x (x is his old class teacher, they Walky talkie him every day to come as back up) and x is always having to leave his own class and go sort ds out. Every email it’s x came and took ds. X had to come down and take ds.

Ds is also being palmed off on pastoral all the time.

I messaged her back last night and said.

Hi. Thanks for your message,

Sorry he hit you today.

He’s been fine since he got home, no bother at all.

Thanks.

(he came home, had a little bit of food and a shower and played Minecraft, so no demands etc he was swearing a bit etc but mainly sat on the sofa building this thing on Minecraft)

He has pda 100% no doubt about it, They are making him earn points and deduct points etc all for a certificate on a Friday, I’ve told her several times. NO

Its the basis of his day at school, I can imagine them no ds don’t do that, right 5 points gone etc etc (he does earn them too)

He earns them for good behaviour, he loses them for bad behaviour,

They are specialist teachers, surely they understand. They know all about pda I’ve spoken to them regarding it multiple times. They absolutely agree ds is pda.

They do some of pda Strategies based on what they say, wording things in certain ways, using humour with him (which he does not even understand 🤣) I recognise they try stuff, but the points system isn’t for ds, it’s too demanding he’s so obsessed by it. And ds being ds wants to lose points. 😭 He says to me I’m going to kick Havana today to lose 15 points, I’m going to pull George’s hair today to lose my points.

Dont get me wrong I struggle like hell with him at home, but I know him inside out. I do know what things work and what things don’t. And I just feel mismanagement is happening on another scale.

I’ve told his teacher the point system isn’t working (they been doing it months) yet they still carry it on. 😩

His teacher seems to be one who think she knows best, that’s what I wrote on here when I had his annual review.

She may have the qualifications, but honestly, who is more ‘qualified’ with these kids, the teacher or the parent? 🙄

We all know the answer to that.

@danni0509 in their defence they've always done the exclusions properly. It doesn't quite sit right with me that she's excluded for having a meltdown (she's fine behaviour wise apart from that) but I was told not to fight them as it's evidence for needing more support.

@Jules912 they're right really because it is more evidence, but it breaks my heart that we have to put our kids through this and prove they can't manage,before any proper support is put in place. The whole system needs reviewing from a standpoint of compassion. I mean, that leads down the whole what is education for debate as well.
@danni0509 did they say anything about not meeting his needs at the AR? It's shocking that they're not trying different strategies, in a special school as well. My DS would be the same with the points thing too!! He has to think things are his idea or he just refuses. But yesterday, they asked him to muck out the horses, and he just did it properly! I asked him how come and he said he really likes his horse so wanted him to have a clean bed. So it's like there was a purpose.

@Jules912 yes that doesn’t sit right with me either, punishing her for something she has no control over (they are breaking the law with that shit) but I do totally understand the more exclusions the more they have to act. So I do understand your way of thinking. Ridiculous that is what it takes to get any support though.

Danni it’s really draining I can see that.

Can you not be REALLY clear with them? An email..

Dear X

As we are moving towards the end of the school academic year DH and I have been reviewing DS’ time at school and where we really feel it needs to change going forward. I appreciate that we may need to meet face to face to discuss but thought it would be helpful to set out our position in this email in the instance.

1. whilst we understand the need for school to communicate with us on a regular basis regarding DS, we have been surprised to see that this seeks to involve multiple emails and calls weekly, often daily. We are not sure what purpose this serves as we would obviously expect issues around DSs behaviour to be managed in school given the specialist knowledge and expertise that school has. Going forward can we please ask for one update, by email, on a Friday to summarise the week (both in terms of positives and negatives, more further on that below.) Correspondence beyond that to be limited to absolutely emergency situations only please.
2. there is a clear pattern that correspondence from school addresses negetives/ problems only in relation to DSs time with you. Given that you are a specialist setting we assume that you are working productively at least some of the time with DS and that he is making some progress or achievements or that there is at some point something positive you can relay to us. I would very much hope that there are some positives to report in the course of a full week. We really look forward to reading these in the Friday update. Perhaps that can start from next week if you are agreeable?
3. 3. We are interested to understand the strategies school are using to manage DS behaviour. Are you… [take moomins text, her words are good re zoned of reg and other things.]

I look forward to hearing from you and as said above we are happy to meet to discuss further. Given that we feel the above matters are fundamental not only to DS but also to us as a family unit we hope to hear from you soon. We will keep a note of this correspondence trail and any discussions we have in school so that we are all in mutual understanding as to how school are fulfilling their role to work positively with DS during his time with you.

Kind regards

a pissed off Danni x