Primary school auties thread 9 - spring / summer 2022.

[danni0509]

Thread 9.

Links to previous threads below.

For the parents / carers of children with additional needs, most of us have asd / adhd children in primary school, but anybody is welcome to join us to chat x

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

Yes, that all sounds sensible. And he is going in for some things so there’s obviously potential for him being in a school setting. Hope school crack on with what they are proposing for him.

The Lego therapy sounds good. DD's SENCO just went on maternity leave and doesn't have a replacement yet (need to get on the school as surely they need some kind of cover?) and DD is really missing her weekly SEN group sessions (which are technically a fine motor group but I think is mainly a small social group from DD's perspective). I think those small group things can be really important to making the whole environment feel a bit safer and more manageable as they would give DS some friendly faces that he knows that would then also be with him in the bigger/more unpredictable wider school environment. Fingers crossed anyway!

Light it’s been on his EHCP since year 1 and never been delivered, so we’ll see.

carrie any feedback from ds about yesterday?

Yes actually they emailed… said that he had done really well, in particular in the classroom environment. Said this would give them a good base for next year when he is with his own class (I have no idea whose class yesterdays was, he is the youngest there so perhaps the existing year group.)

Can I ask you all a total random one.., really driving me nuts and worrying me also in view of DSs epilepsy diagnosis. I think I’ve touched on before but DS is going through a phase of laughing constantly , well not all the time obviously but randomly for no reason. It’s quite a hysterical laugh… imagine someone holding you down and tickling you as hard as they can. Just does it when we are walking down the street, in the garden, absolutely nothing funny going on. When I tell him to stop I can see he is really struggling to hold it in, manages for a few second then bursts out again. People are always turning to look.

last night he went to bed at 8.30. Woke at 11 just laughing his head off, really went on most of the night. he’s fully awake, ‘with it’ etc. I’m aware that there’s gelastic epilepsy but that is characterised apparently by short bursts of hollow laughter and other seizure type things. None of those apply.

really not sure what to do. I know Susan I think said her DS laughs when he’s in trouble which I kind of get but this is just hours of laughing for no reason. Obviously that’s irritating … especially when it goes on all night.

I wondered about a separate post but any of you had this????! Sorry for slight de rail… just stressed and obviously v tired .

Sorry, no experience with this one. If not epilepsy related, maybe some sort of sensory stim thing? That might be a bit of a stretch though given the duration of it.

I wondered if your ds had communicated anything about how he found the session?

Interesting morning at school. We went in and ds did his usual messing around, refusing to go outside and join the others. One of his TA's came in to see us and told him that one of the boys in his class (that I believe ds is scared of) was off today. Just chatting with him about who was outside and who wasn't there. When he heard this he went straight outside onto the play equipment, where usually he's been hiding at either the other end of the playground or just inside the door leading to the playground. After they went back inside, ds sat any built some Lego with a boy in the class, whereas yesterday he sat by himself in the side room.

I'm only aware of one incident between the two of them. It seems unlikely that this is the only reason, though for ds it may be enough. It's hard to know when he doesn't talk about it.

He only stayed an hour after I left him but at least it was a more positive experience for him. Tomorrow morning they have PE which they are usually split into separate groups for, so hopefully this will be ok too.

He hasn’t communicated anything, but I’ve not asked yet, I probably should. Getting out cards etc is quite time consuming and I tend to put it off if he seems happy but I’ll let you know. Generally with Ds he is happy to go places but then falls down in terms of his cooperation/ social observance. So if the whole class is sitting down and he wants to stand up he will. If everyone is quiet and he wants to make noise he will make noise and so on.

that’s interesting re your DS. Can’t staff keep them in separate groups/ make provision if this is the issue???

@carriebradshawwithlessshoes maybe he just really likes the sound of it!! If I tell DS to stop doing something, he usually does it more so I might try saying 'oh it's nice to hear you laugh' and then just ignoring it!

Good point Susan! I’ll try that… thank you

I haven't encountered that before Carrie I'm afraid. That's such a positive start at the new school.

Open good to get a few more clues as to what is bothering your DS.

We have had to increase epilepsy meds here as DS has had a lot of absence seizures in the last few days although it appeared before that to have controlled them. The nurse said that he is still only on 75% of max dose for his weight. Hopefully DS won't be the exception that proves the rule.

Wasn't v happy when I arrived at school with DS this morning as his TA was leaving. She had been sent to buy a leaving gift - not sure why someone from the office couldn't do that. What about DS's needs? I didn't say anything directly but it was all a bit uncomfortable. DS seemed to have had a good day any way.

Haven't had a postponement email from the Tribunal so it looks like it is going ahead on Wednesday. My biggest worry is that I will get too emotional/angry and fail to explain things coherently. When it was my nephew's I did cry but managed not to lose control - fingers crossed I can repeat this.

Good luck on Wednesday dimples! Sorry about the seizures. Are they trigger by particular events or are they just random?

Great that ds had a good day at school open.

Carrie I don't know what could cause that. I think I've said it before but my ds does randomly laugh at stuff when there's nothing there. He did it a lot when he was younger and I'm pretty sure he was replaying things he found funny in his head. Which I find amazing as I have almost no ability to visualise things in my head at all.

Hope everyone else is ok.

Ds is doing several horticulture days with his school this term and today he very proudly gave me an onion that he pulled out of the ground himself! I love that they take him to do things like this with the new school. I never feel like I do enough of taking the kids to new places.

Stranger Things fans - apparently there will be one more series after this one 🙌

Apparently the season 4 finale is 2 hrs 19 mins!

dimples I hope the increased meds settle ds’ seizures. At ds old school, whenever his TA was off they always covered with someone else he knew. Glad ds seemed ok anyway.

liv great for ds

I will speak to the school to see what can be done. Anecdotally it seems about 15-20% of the children are struggling due to the behaviour of other children. It’s much more than I thought.

Ah just typed really long msg mainly for dimples then lost it. Is he taking the slow release/ 24 hour epilim chronosphere as opposed to the liquid which does not give sustained coverage? I would have thought he should be. Dr changed DSs meds as said more breakthrough seizures with the liquid as full day coverage is not as good. The chronosphere comes in sachets like sugar sachets you get in a cafe. Ds has 4 with brekkie so 400 mg in total. You can put them on food etc. worth asking if not? It was a point dr made early doors for us and ds wasn’t partial to every day seizures!

Liv i also commented on the onion! That’s lovely. Interesting re the laughing did it go in long for your ds? Did it happen in the night? Did you try and distract him away from it? Ds started last night but I got out a toy and he stopped and engaged with that. I often think he does these things when bored/ unfocused

Just checked box dimples they are ‘modified release granules.’

Dimples reading your post I don’t know then whether DS has been short changed on the one to one! Does DS have the same person?! School have said they have to provide one to one but not the same person. They use his funds to employ one woman but very often she is elsewhere ‘for a break’ (schools words) often in DDs class as a TA! I did take issue a while ago when DS was having up to 5 people all in one day, passed from pillar to post. When that happened toilet accidents were increasing etc. School basically just said so what? There’s always someone with him, that’s the extent of our obligations and Mrs X needs a break some days…..!

Thanks Carrie, that's interesting. He is on the liquid so I guess we'll see how the next couple of weeks go and then I have a phone appointment with the epilepsy nurse.

Open and other Stranger Things fans I have just caught up to date - now desperate for the end of the series. It's odd in a way that there is a 5th series as it feels like it is building to a close but I guess part 2 will raise more questions. I found the scenes with Max v moving. I could probably have done with a bit less of El in the 'bunker'.

DS's school has always had the same person full time 1:1 with him - first 3 years the same TA. Ed Psych had originally recommended that role was shared between 2 people which I think would have been better. Now a boy in the parallel class has finally got an EHCP I think they are going to swap around between those 2 TAs.

Took the children to get an ice cream and went to the park after school/nursery. This was clearly too ambitious and ended with DS hitting me across the face with his shoe. I can't wait til bedtime.

dimples I don’t want to say much but I held my breath through that whole scene with Max and the music!

Anyone else have a crush on Steve? I thought him and Robin were hilarious in S3.

Their relationship was really good. My weird crush was the Russian prison guard

Well I have typed up all my notes for the DLA form and been through the Cerebra guide. Now to try and cram it all onto the form! Think I will do it in pencil first and then write over it when I'm happy with it. I guess if we get at least middle rate care, the next thing will be to apply for carers allowance. Is that a long form too?

Hi all! Well done @openupmyeagereyes on the form filling. I don't think you can work many hours if you claim carers allowance but DLA isn't means tested.
@dimples76 at least you tried!
About 121, DS had the same lady at mainstream as he needed the consistency but he actually ended up quite dependent on her. At his school now, they provide 121 care but less obviously as there's 5 TAs in the room so DS likes all if them and isn't overly reliant. I think setting and staff training in sen both play a big part in it all.
Took DS to a local massive fair type thing today. He did really well but I am shattered!!!

I don’t work at all Susan, it’s quite impossible at the moment.

Oh sorry I see now @openupmyeagereyes , then definitely apply for carer's allowance.

Well done Open - it's a rather depressing job

Your day out sounds v tiring Susan hope that you have your feet up. That's one of the reasons I think that special school would be much better for DS - he is v dependent on 1:1 and it's v tough if she is off unexpectedly. A small group of children with teacher and a couple of TAs would be so much better for him.

DD has chicken pox. DS has never had it. Fun times ahead!

Suspect they will both get it dimples, ours did. Hope both not too poorly. Have you had it?? Best to get it now for them.

with us DS got it and wasn’t poorly DD then got it. She was quite bad but thought well, they can’t do anything so no point going to Drs, Ended up when she was covered and quite unwell taking a pic into GP. They gave her meds and admitted yes they can halt it if given meds. GP said one child got it of hers, she waited for the second to catch it then at one spot gave him meds and it didn’t get worse. Often kids aren’t poorly but don’t suffer if DS is as apparently ‘the meds won’t make them better but will stop it getting worse.’

any more medical advice anyone? Epilepsy? Chicken pox? 🤣🤣🤣