Primary school auties: summer and the new academic year - thread 7

[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

sorry, I meant dh not ds re the melatonin.

Hopefully it will be a phase, yes.

Crush the slow release tablet it will then become fast release. Tip from the paediatrician!

We don't have any as I haven't used it in a while. Antihistamines are supposed to help make them drowsy too. I gave ds Piriton one night when he woke up but it didn't help. Now I can't go near him with it as it tastes foul

🤣🤣. Gin?? 🤣🤣

DD withdrawal probably go with that. Worrying as she’s 9. The phase of ‘mummy that’s revolting’ has been replaced with ‘hmmm!! That’s actually quite nice’ (smell to be clear, I’m not allowing her a gin on the rocks on a Sat night…) 🤣🤣🤣

Dd would not withdrawal 🙄🙄

Carrie you can hear ds down the street from outside, Dh has commented plenty of times he hears him from outside when he’s coming in from work, one of my neighbours is a single bloke and never comments but knows ds has autism as I’ve told him, he’s ok and has his kids on the weekend and they are quite screechy and run around (not tantrummy though) and the other side moved in 6 weeks ago, retired couple who never leave the house. We’ve been in this house 5 years and have had 3 neighbours both sides now.

No idea if it’s because of ds, but I honestly can’t help it. It’s my mums running joke ds drives the neighbours away! Lol.

He screams / bangs / has the most horrific tantrums most days. He screams help me, stop dragging me! (I wouldn’t call it dragging, just gently moving him on / away if he isn’t listening and I need to stop him doing something) he screams swear words a lot too.

His tantrums are awful and SO loud, and lately as I mentioned before they are on steroids, can only imagine what my neighbours must think especially the new ones. The new ones I was putting a bin bag out recently and they spoke so when they asked how many children I had, I dropped in that ds had autism, well actually what I said was, I have one, he’s seven, you won’t have seen him yet but you will of definitely heard him. I said he had additional needs and goes to special school and they gave him a tub of sweets left over from Halloween to give to ds, the bloke was nice enough, he said don’t worry we have grandkids etc I’ll give it a year before the house is back up

Those that judge should maybe come live a day in the life though hey!!! Wouldn’t wish it on my worst enemy.

Danni sounds like he needs an Oscar!!!

School rang. DS tantrummed this morning for an hour then bit one to one. Class teacher said ‘no member of my staff comes to school to be physically abused.’ I’m keeping him off tmrw at great inconvenience to me. I just can’t cope with this. I put phone down on him in the end.

Talked through some of Magrats strategies, teacher said it’s not behaviour we should have to be dealing with and talking about strategies in the first place though, is it?

Then said could I please tell him off.

I always tell him he’s a drama queen carrie.

I know your ds is non verbal, but does he understand what you say? Ds never did, that’s why I ask. If he does, how good is his understanding?

@carriebradshawwithlessshoes the school is legally obliged to make reasonable adjustments so, yes, it is their job to think about strategies and the best strategy is to prevent your DS getting like that by supporting him to avoid overwhelm. I would start by picking them up on the word tantrumming. It isn't. It's a meltdown / panic attack. Caused by anxiety caused by demands, which are caused by them. Telling off an autistic child in the way they mean will have no effect and could make the behaviour worse. I am actually astounded that they do not realise this.
Re the staff not being there for that line, we had that too and it really annoys me. Calmly reiterate that your child did not choose his disability and is entitled to an education. He is not purposely making life hard for adults, he is a small child who feels scared and out of control.
I would put all this in an email, outlining the relevant laws including disability discrimination, to head teacher with senco and governors and your la case worker copied in. Ask if they're saying they cannot meet need. If so, demand an emergency AR. Try to stay rational and calm in your tone so that they take you seriously. I thought our mainstream was bad, but I was never so flippantly dismissed by our ex head, even though things got pretty hard at the end. If you can, list the times your DS has not been included in things, how staff talk about him negatively in front of him, etc. Try to recount specific times and dates.
What an awful head to say its not his problem, just washing hands of a small child. I honestly think much more sen training should be part of all teacher training programmes.
Re the speaking, DS just started doing it really, he taught himself stock phrases for a long time then it slowly became more natural, although he now chats like a little professor bless him (latest thing is saying to be fair after everything!)

carrie Magrat is right, the school have an obligation to work on strategies to help prevent your ds getting to this point. Is he really the first child to come through their doors with SEN related behavioural issues? Have they talked to their specialist teaching team about help in supporting him?

Are you keeping him at home tomorrow because they asked you to?

I had a couple of emails from the head teacher about this morning. Nobody had discussed the TA being away. Autism 101 really, isn’t it: consistency of routine and preparation for change. It may still have happened anyway, he just gets completely wound up sometimes, but maybe not. He does similar at home at the moment just about screen time.

Sorry carrie, I didn’t mean to imply that your ds had massive behavioural issues. Many of our dc’s behaviour is less than ideal at times and under certain circumstances. I can’t remember, are you hoping to move schools?

I'm amazed that next door (the attached side of our semi) haven't called Social Services on us. DS regularly screams 'Stop it, you're hurting me' - normally when I am trying to help him get dressed/brush teeth etc but often when I am not touching him or in his personal space. They have never said anything about DS's behaviour or the noise. But when my sister stayed for the weekend and left her dogs in my house one for a short while which they didn't cope with she texted me and said she knew that things could be tough and she would be happy to help eg let the dogs out - I think that they were v relieved to hear that the dogs were only v temporary residents.

I hope that you can get stuff sorted with school Carrie - or rather get into the new school soon.
Open disappointed on your behalf that they did not think the TA issue through properly.
DD is poorly again and I think that DS is v jealous. His behaviour has been rather difficult. This evening DD was a bit brighter and was running up and down pretending to be the Gruffalo until DS with a big smile on his face pushed her over. As I held her sobbing in my arms I had a little cry too which mystified DS - at moments like this I do feel really worried.

DS managed to have flu vaccine today at school, my sister (who is a TA there) was roped in and many bribes were offered.

I lodged my EHCP appeal re lack of OT provision at the weekend. I saw the SENCO at pick up and she said that DS has a new caseworker who she hoped would be more efficient but she's still waiting for a reply to a email she sent weeks ago.

No need to apologise open I know what you mean.

Danni re understanding he understands basic instructions and things like numbers, colours, letters etc. I don’t think he understands conversation at a general level but I may be wrong. So for eg if the teacher started a lesson telling the children what armistice day means (aimed at 5/6 year old understanding) I think he would be totally lost with those words. I wonder if that’s why he gets up in class a lot of the time because a general chatty lesson is just over his head. Danni, I find it amazing that your DS went from not understanding sit down at 4 to now understanding about stars and there being an Iceland shop and country etc etc. How did you get from that to that??!!!!! But then of course when a child can’t speak you never truly know what they understand. Sometimes I’ll get his cards out and ask a yes/ no question and do silly things like give him 10 names and ask which is the prime minister and he gets it right. Also stuff like we have some animal snap cards and I ask him to put in 2 piles handing over one at a time one pile may be has fur/ lives on land etc the other is has no fur/ lives in the sea etc. And he’s ok with that. So who knows what he knows/ understands really. If he can’t communicate it it all is futile really isn’t it.

To be fair to school I’m keeping him at home because I know they don’t want him there and I can’t spend all day on tenterhooks then having another call from them. They have not asked me to. It’s made me feel really ill today with it all tbh.

They do have other SEN kids but none that are non verbal. I think I said before they all have a very specific interest/ obsession which school just use to bribe them but DS doesn’t, not to that extent.

Glad he’s not the only one shouting the street down btw!

Yes, v much hoping to move schools open…

Oh yes, there’s the issue with finalising the EHCP. Any progress there?

Btw I think there’s every point in working with him on these things, he’s shown you that he understands a lot. Often it might be he doesn’t see the point in something or that he isn’t interested, not that he doesn’t understand.

Ds was calm at home today, despite his morning and he went to bed with no fuss. Hopefully he sleeps later tomorrow 🙏

dimples sorry dd is poorly and ds is finding that hard. Great he had his flu vaccine though. I still need to arrange ds’.

Oh yes dimples, we have the stop it you’re hurting me when I’m nowhere near him, me just saying ds bedtime and walking towards him and he’ll say it. I’ve lost count how many times ‘I’ve broken ds arm’ holding onto him when we are out, ‘pulled his hair’ when brushing his hair and got stuck at a knot or ‘strangled him with the seat belt’ clipping him in etc. I feel like gagging him sometimes the ridiculous accusations that come from his mouth! I say to Dh I’m not touching him anymore. Lol.

Carrie, it’s hard to know what my ds does actually understand tbh, sometimes he doesn’t understand really simple things, one of his ehcp targets for this year (he’s 8 in January) is to follow a 2 step instruction, that’s normal development for a 2 year old. (I think a lot is down to adhd and his brain a million miles an hour not taking directions in rather than not understanding though but then again who knows, hard to really know)

He still doesn’t understand a lot. He mentioned the taxi drivers daughter the other day, (she’s his age) and the taxi driver talks about her to him, he said to me... who is ‘daughters’ mummy? I said xxxx (taxi driver) he said am I ‘daughters’ dad? (as in him) he thought he was her dad 🤣😂 i honestly have to give up answering his questions sometimes.. family dynamics is something that’s over his head clearly. LOL

Pleased ds went to bed with no fuss open. Still PITA here every night, I’m back at CAMHS Thursday, hopefully they’ll have my horse tranquillisers in stock that I jokingly requested at his last appointment. Seriously though. Need to try something else. Sleep wise and adhd wise.

Had his asd phone review appointment Friday, explained everything to her, regards to his increased raging tantrums, awake more despite sleep meds etc, she said to discuss a non stimulant adhd med, think that’s what we are going to go for.

Ds not in school today. He was agitated about getting out of the car and I didn’t want to push it after yesterday. When we got home dh and I talked to him about the new school so I’m glad that conversation has started at least. They better not turn around and say it was a mistake now.

He was up at 4:10 today. Better but not great.

That is still v early - hope he continues in the right direction. Glad you managed to start to talk about school. Probably good that you had a quiet day to do that, but a real shame they didn't talk to either of you about the TA being away. As you say, that does seem like really 101 stuff... (although sometimes I completely fail with DD, like with the flu spray, so I also understand people can cock up, as much as we wish professionals wouldn't).

Hope everyone’s week is going ok and good luck for tomorrow danni.

Hope dd is better dimples. I know it’s stressful but honestly I’ve seen this behaviour so much with siblings, often where the boy is the older one (often tending to get jealous.) one of my really close friends has an older boy and younger girl (both NT), I recall so often seeing the boy for absolutely no reason whacking/ pushing/ pinching his sister, I think it was purely because she was smaller and needed more input at that time from my friend. In fact I remember my friend having to go to a and e once as ds dive bombed on DDs head on the sofa feet first, it was actually quite a nasty incident. I can confirm they are both much older now and good friends 🤣🤣.

I’ve kept DS off this week under the pretence he’s ‘not very well.’ No one has queried it. It’s actually been quite a nice few days. I’ve just worked with him for an hour writing (or trying to write) some letters, number bonds to 20 (plus, minus, multiplication), choice of 4 numbers in front of him, I write out the sum on a mini white board and he puts the right number in our ‘number bucket’ which is next to the numbers. We do odd/ even numbers in a similar fashion. No fuss, certainly no pinching or biting, as Open said he just gets a bit whiny when he’s had enough. Tried to do a bit on the laptop but him trying to press the button (even though I can see where he’s aiming) is like asking someone to press a button after drinking a bottle of vodka. Bit of reading too. No stress.

I attended an online open day for our local SS yesterday and it just made me think how amazing it looked. They were just saying things that I thought God, that is just what DS would do. Stuff like initially they don’t put all the equipment out as the kids would just tip it all out on the floor, throw it etc… there’s one piece and when they are using it appropriately another piece comes out. Reception room at DS school looks like toys r us on a bad day but they are horror struck that DS can’t/ won’t select one thing nicely out of the million of options to engage with. Just little things like that.

Also they say that ALL children communicate with them one way or another (pecs, sign etc) after a very short time. School have had DS for over a year and when I ask them about communication with him they look at me like I’ve asked them to solve world climate issues.

EHCP I believe almost there then we can consult.

Daft qu… do the school need to know which other schools we are consulting with?? I want to tell them as little as possible.

carrie glad you've had a low stress few days with ds. Regarding the school choice, I've just checked our EHCP and it only states his current school and where we wrote into the body that we wanted to consult with our choice of school. There isn't an official section where it's been stated. There's no guarantee, I suppose, that it won't end up on the final document somewhere though.

Ds went into school today after refusing yesterday. The TA was back today so that's why. Hoping he'll go in tomorrow too though I have not notes on today so don't know how it went.