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

999 replies

openupmyeagereyes · 09/12/2021 13:45

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

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6
dimples76 · 11/01/2022 18:26

Happy New Year Light! Glad to hear you had a good Christmas.

Unfortunately the stairs issue seems to be becoming a bit of a thing. The three of us were walking downstairs at nursery after collecting DD and DS kicked her. Luckily he did not manage to get much force behind it so DD didn't fall. Apart from his cousin who is a year older than him DS has always been v gentle with other children until DD came along. I would never have adopted again had he been like this with other kids.

I had a phone call from the Council today re my EHCP appeal. The Council's position is that NHS OT says that school can implement their motor programme. I pointed out that the two private OT reports one commissioned by school and one by the Adoption Support Fund both had detailed recommendations re sensory diet etc whereas NHS refused to provide individual sensory advice. I asked how just following NHS report will help DS's emotional regulation, improve concentration and reduce self harming..... She is going to email me on Friday (their evidence is due by Monday).

danni0509 · 12/01/2022 14:00

Ds had an incident at school this morning were one of the staff got hurt and had to go home.

I haven't heard from the school, the taxi passed the message on.

Ive asked ds what happened but of course he's been ever so helpful by telling me he doesn't know.

The school said to the taxi we are not sure if ds did it intentionally or not.

I'm getting a bit annoyed with them discussing everything with the taxi and pa though. How's it any of their business?

danni0509 · 12/01/2022 14:26

Im really not happy with ds at this school.

He's recently forgotten how to spell his name, hes known this since reception, he's forgetting things he knew years ago like ch and sh sounds. Open you'll know as we have discussed the phonic sounds for ages on this thread, how long ago ds knew those!, about 2 years or so? it's like he's going backwards with his work, main reasons being (1 he doesn't attend full time school so is getting half the opportunities the other kids get, 2) he's just bloody playing and they are pacifying him and wasting time until he's collected.

They keep freezing toys in blocks of ice and ds is having to bash into the ice with tools to free the toys.

Fun the first time, but he's telling me he's doing it every day and the taxi often comment he's been doing the ice blocks again.

They said it again today and I said you know why don't you? Because it kills loads of time. That's all they are doing it for.

He's in the sensory gym for at least an hour a day. (Wouldn't be a problem if he didn't only do 3.5 hours a day at school with 1 of those hours being lunch time so what 2.5 hours of actual learning time, factor in the ice and the sensory gym etc where's his actual work time?)

He has a morning break too and goes to the orchard collecting apples and onto the field (he comes home head to toe in mud every day and his coat and trainers need washing every night)

I can work at the sounds and writing his name myself, but his school charge my local authority 41 thousand pounds a year for his place?! Why am I having too!

danni0509 · 12/01/2022 14:31

They are trying to pass the ice blocks off as science. Wouldn't be so laughable if he wasn't forgetting how to spell his name or do reception level phonic sounds.

Sensory gym, fair enough. I can understand that more as It helps ds to regulate etc etc.

Just don't think it's acceptable really when he's going backwards with his learning, I'm not the only person to notice. Dh / my mum too.

openupmyeagereyes · 12/01/2022 15:13

danni if it were me I would call an emergency review of the EHCP and outline all your concerns.

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openupmyeagereyes · 12/01/2022 15:14

Rubbish afternoon here. Ds just had a 45 minute meltdown. He now wants me to go to work so he can stay with dh. I’m feeling pretty crappy about it all Sad

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danni0509 · 12/01/2022 16:13

Sorry for your shit afternoon open, if it's any consolation ds tells me he wants me to move out and he wants to live with daddy. But then if I go to my car to get something I've forgotten or in the bath, or for any reason dh has to watch him he's constantly asking how long until I'm back, so I know he doesn't really mean it.

I think they take frustrations out on those they are closest too. Which makes sense since you spend more of the time caring for him. Was there anything particular set him off?

Do you want me to make you all laugh? Ds school has just emailed me to say ds has taken a toy and can I return it (I always do) they have this weird obsession with ds taking their toys.

Meet the toy he stole.... a teddy bear fit for the borrowers 😂😂

Primary school auties step into Christmas and the New Year - thread 8
openupmyeagereyes · 12/01/2022 16:27

It's ridiculous danni. Ds old school were often funny about him wanting to bring things home he was interested in, always just little toys. He didn't do it often and always took them back the next day without any problems, I could never really understand it.

There was an issue with YouTube which wasn't loading on the TV and I was trying to sort it out. He decided he wanted to go and disturb dh to fix it, who was in a meeting in his office and it all kicked off from there. He just goes on and on and on, doesn't seem to know when to stop though he often seems like he is absolutely in control if that makes sense? After he'd calmed down a bit I read him a story and put him in the bath and he's back on the TV now. I'm just catastrophising that he's going to refuse to go to this new school and that this will be the next ten years of my life! Shock

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MagratLancre · 12/01/2022 16:32

Ha @danni0509 that toy makes the fruit look like food fit for a giant!! On a serious note, sorry DS' school are being so crap, sounds annoying esp if he is forgetting some of his learning. I'd agree with calling an emergency review.
@openupmyeagereyes sorry you're having a tough afternoon. DS often says he hates me in a really nice voice then laughs and says 'only joking' then carries on with what's he's doing oblivious to the effect on me! He likes to.play with words to get reactions. Hugs.
DS came home today covered in what I thought was paint...turns out he chose squidy playdo for his activity time...how was it squidy DS, I asked. Oh, I turned it into gloop by putting water in, was the reply! No idea if it was meant to be gloopy or not!
We had our annual review today, school were so positive and supportive, I still can't believe the change from his old school. We have the most glorious sunset here tonight too. And it's Wednesday again ladies, half way through another week!

danni0509 · 12/01/2022 16:38

Ds old school, he used to come out with pockets of plastic fruit, dolls house furniture anything and everything, I always used to return it the next day but there was never an expectation. They used to laugh at him filling his boots and tell him to look after it over the weekend etc.

These are just ridiculous, battered ancient cars with missing wheels that I'm sure my grandad once played with lol they'll email me about, they once actually phoned me about a Lego figure. But then don't ring me and ignore me for weeks when I request they contact me to talk about an increase of his hours. Arseholes!

Bet your so nervous about his first day at the new one! With regards to if he actually goes inside. I'm nervous for you.

openupmyeagereyes · 12/01/2022 16:51

danni I'm worried I won't even get him in the car! Send help.

Seriously, there must be special needs supernanny types. I need someone to just come and live here and help me solve all our issues. I literally have no idea what to do.

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openupmyeagereyes · 12/01/2022 16:54

I'm re-reading the explosive child but I don't think that ds can/would do the problem solving bit.

I'm watching/reading or planning to watch/read so many things but of course nothing is exactly your issue or like your child so it's not that helpful.

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danni0509 · 12/01/2022 17:14

The explosive child I think is rubbish anyway, I've read it twice too. I always see it recommended on here as if it's the bees knees and will solve all your problems. It wont and if it does your child isn't that bad to start with Grin

dimples76 · 12/01/2022 19:24

Sorry that school are being rubbish Danni. Did they contact you about the member of staff or just about the toy.

Open DS told me this week that he wants a new Mum. He wasn't even angry or having a problem at the time. He just said he wanted his classmate, Xander's Mum to be his Mum. I said that would make me v sad and he told me that I would still be okay as I would have DD and Xander. I said wouldn't you miss me, DD, Granny, cousins etc. He said no. I asked about Xander's little sister and he said she should live with me too. It was a v odd conversation, he was v calm and matter of fact and I think I responded calmly even though I felt awful. He doesn't even know Xander's Mum by the way. He joined the class last year, she seems perfectly pleasant but DS has barely interacted with her. I don't know if this is related to our bereavement sibling rivalry or something I have done. Open like you I wish someone would observe and advise me what to do. It must be stressful waiting for first day at the new school for all of you

danni0509 · 12/01/2022 20:15

Dimples they didn't mention the incident with the staff member, just said he'd taken his medication and can I send red teddy back.

I feel the same, I need to be told what to do, I need some serious help sorting ds out, much much more than basic parenting courses. (Even the specialist ones are waffly text book shite - I've done quite a few off my own back and learnt nothing new, that autism course bored me to death endless rubbish about sand timers and now and next boards and routine - not helpful) things I think I should do to manage his behaviour aren't helping.

I asked ds teacher how I should handle ds saying negative things. He had been telling his teacher he hates him and also told his teacher he hates me, and he mentioned it on email that nothing had triggered it, his teacher was just helping him with something and he said to him xx I hate you, and I hate my mum too, why he's starting on me when I'm not there I don't know lol. (He doesn't even know what hate means really, I think he thinks it means don't like, which I suppose really it does mean don't like, but in a more severe way, but not that that makes it any better because he's still saying it) but his teacher just wondered if ds spoke like this at home and how I handled it. (No point asking me mate 😂)

He said ds was speaking really negatively, going from being nice and happy to saying really negative things like I'm going to hurt you in a minute / I'm going to break you etc etc.

A bit similar to dimples situation, in that ds just decided he wanted to say it for no reason, no particular trigger. So I told him he says things like this frequently, and i asked. Should I ignore? Because I tried and it didn't work, do I say anything specific back to him? I've said things like not kind ds, I'm not listening to unkind words. Talk nice words and I'm listening etc etc. (I make a point of saying that's kind when he says kind things and unkind when he's saying unkind things, so he's got an idea of which is which) Doesn't work. Or when he says I don't love you, I say well I love you ds. (I swear he only does this because he wants me to say it back, he says to me say I don't love you and I'll stop - asif I'm going to say that silly billy!)

I just wanted to know from his teacher hows best to play it really. And he didn't reply to that part of my email just responded to something entirely different I'd said.

So still none the wiser what I should do..

And I have situations like that across the board. I don't know if what I'm doing is helping or actually making anything worse. I need to divorce dh and marry a specialist teacher who can take over the parenting. And I'll stay in my bedroom until it's done Grin

Autism is such a bloody minefield isn't it.

danni0509 · 12/01/2022 20:16

Also sorry I got carried away with my ranting on as usual, but Happy New Year to you too @LightTripper been meaning to write that for days!

dimples76 · 12/01/2022 20:47

Although I would be a bit of a nightmare on a SEN super nanny show as I don't think I would respond well to criticism of my parenting. I am meant to be getting help through post adoption support and the funded therapy but they seem rather rubbish and there are constant reasons/excuses why we can't have a session. The current one is that I need to process my loss - I told her that I feel fine to go ahead and I am desperate to get help for DS, our relationship and especially DS-DD's relationship. Of course apparently that means that I am in denial. Looks like I'll have to be patient.

Open and Danni this pattern of saying hurtful things seemingly out of the blue seems familiar. It is hard when you're left wondering why/not seeing any triggers for it isn't it.

openupmyeagereyes · 12/01/2022 21:06

Ds doesn’t say it out of the blue, he says it when he’s angry along with many other things.

Light happy new year, I’m
Glad you had a good Christmas.

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danni0509 · 12/01/2022 21:17

I've been laid in bed getting in and out for 30 minutes now to cut ds finger nails.

I did one hand last night. The hand I need he's laid on, I keep moving it to perfect position and he's moving it back. So I'm going and laying back on my bed and giving it 5 more minutes and trying again.

Need to get them done, he looks like he's been to the nail salon. For extensions. Also looks silly one hand is nice and short. Don't know how they grow so quick must be all the chocolate he eats.

danni0509 · 12/01/2022 21:24

I give up, try again tomorrow night.

Good night all.

dimples76 · 12/01/2022 21:41

Well that makes a lot more sense Open

I am 'lucky' Danni DS bites his nails so I never had to cut them

MagratLancre · 12/01/2022 22:00

@danni0509 could your DS be trying to make q joke when he says those things? That's what my DS is trying to do i think, say opposite meanings because its funny because its not true, but forgetting that I don't know its not true (theory of mind and all that!) If he's saying horriblecstuff about poo for example, I'll say 'oh DS, let's cross that one out, please'. That might work??
He's just gone off to sleep, bless him, I couldn't find one of his usual torches so he had a different one, big drama etc!
@dimples76 DS says or does things just to see the reaction. Tough though, hugs.

danni0509 · 13/01/2022 06:22

No magrat. He's deffo not joking.

carriebradshawwithlessshoes · 13/01/2022 09:49

Sorry Open, Dimples, Danni. And happy new year Light. Here’s what I think. Just my thoughts, not everyone may agree.

Open, DS new school sounds SO promising. I know it’s hard but sit tight, it could be a game changer for him. I think all the time about the super nanny moving in in whatever form she takes, sometimes the paediatrician, sometimes someone else. One of the mums in DDs class has a very senior MH job and I’m on the verge of asking her some questions. But I digress… I think the best advice should come from a really good, specialist school. Magrat seems to have struck lucky, Open this may open a whole new chapter for DS. When does he start? We all have everything crossed for you.

Dimples, when I read a lot of what you say it’s like talking to my friend who is in exactly your position (mum to 2 adopted children, her DS is 8 with some SEN, delayed with all assessments for asd because of concerns his issues may be linked to trauma and so on.) Her DS is lovely, super sociable but very impulsive and other things. I almost didn’t type this as I hate peoples who make blase assumption comments about what other people can afford but if you think adhd could be something, could you get a private assessment done and meds prescribed that way? It’s all online and quick and doesn’t cost the earth. It’s what we did for DS though we are now held up with this ecg but that’s my issue not DSs! We would have had the meds (same ones as prescribed by nhs) otherwise within days. I’m not anti nhs but waiting for 2 years for a CAHMS assessment is ridiculous if you have a child that needs help now. They may not work at all and I understand Dannis position, that could be us too! But I don’t want to have to wait 2 years to even try if it could be a game changer. I can PM you details if you want me to dimples.

I know how you mentioned SSs before Xmas… have you seen anything? Much of what I’m writing here is on the back of a conversation I’ve just had which I’ll summarise below….!

Danni, did you have to take the door frames off for DS to get that toy in? 😆😆. I’m no expert in EHCP meetings but I know everything involving the LA takes a day and age. Personally (and it’s only me) I would be demanding a meeting face to face (or zoom if they won’t accommodate that) so they have no room to wriggle out of not answering emails and so on. I would tell them I’m making notes and they will be sent to the LA too. I would want someone senior there and I’d be saying very bluntly no taxi discussions, targets for DS to be set 3 monthly and then a follow up meeting, a diary to explain daily exactly what he is doing and increased hours! Can you take someone with you, your mum? Dad? DH? Magrats school seem really on it, I appreciate our DC are all different but she is probably best placed to give a steer. At the end of the day though you shouldn’t be having to fight them all the time… can you be applying elsewhere? I know your local school you said was good but rejected your application. Why? On what grounds? Can you revisit this option?

I don’t think any of our children hate us, I think they say that for a reaction or because they are angry and can’t appropriately express that. I think a lot of it is testing the waters. Obviously I don’t have this but think some suggestions above are good, I like Magrat words of let’s cross that out. I think downplaying is best but I don’t know. A good school (SS) should in my opinion be able to identify why a child is saying this and give some educated responses as to ways to respond. Just saying oh dear, he’s saying this, does I’ve say it at home? Then looking puzzled isn’t good enough really, is it?!

I spoke with the SS that has offered the place for DS in sep and it sounded amazing. Just really understanding, full of suggestions and strategies, plans, targets, regular liaison with parents re those targets and revisions if they weren’t being met. Speech and communication top of the list of things to push with life skills as much as academics. Now this may all be rubbish and not come off I’m not daft but they just sounded so in tune with what DS needs. At the end she wrapped up by saying look, we really think we can help him. And that’s all I want really. I’m still waiting to hear from the unit… if DS could try that in the meantime that would be good but who knows.

Magrat I keep meaning to say and then forgetting… a friend of a friend at uni wrote books for years!!! I mean over a decade… couldn’t get a publisher. She is now a publisher fiction author and has had several published but it took soooo long! So don’t give up!!

openupmyeagereyes · 13/01/2022 11:35

carrie the school sounds amazing, I would snap that place up if you haven't already.

Yes, new school should be fab. I guess I'm just struggling to see a way out of our current situation. I appreciate the screen time addiction is something that we are responsible for having created but I'm just stuck at how we fix it. The obvious solution is to gradually decrease time on and increase time between sessions. The resulting tantrums are just not easy though and hard when he refuses to engage with something else and just spends the time moping and moaning. Hence we need help!

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