Primary school Auties: into 2020! - thread 4

[LightTripper]

This is the continuation of the thread for parents and carers of autistic children in Early Years and KS1. Most of us are parents of children in Reception or Year 1, but all welcome!

Here are the links to the previous 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

I think that ds school is going to break me. How can they say they meet need when in 1 hour 30 minutes they can't even keep on top of his toileting for this short period of time wet and soiled very clearly wet too. He also walked past the the senco and deputy head. How can they not notice.

Sorry for seeming to hijack the thread. How is everyone doing? How is everyones dcs?

Not hijacking at all!

DD is doing OK I think! She does seem a bit dreamy/out of it the last couple of days, which we're hoping is down to a cold rather than disruption of having a new TA (she told me she preferred and misses the one who switched classes - who went on the Early Bird with us - but that she also likes the new one, who she did already know from playground/PE, so hopefully she'll adjust OK).

So I think we'll just keep a watching brief this week and contact the school if she still seems to be zoning out/tired next week.

And yes, that is really disappointing that they don't notice/care about his toiletting (plus the fact that he was fine over summer and now not - so you would have thought that would be pretty clear evidence that school is proving too much for him/the right supports are not yet in place).

Do you have anything else in the diary with social worker, SENDIASS or anybody else who has been useful?

@lighttipper i am glad dd seems to be doing ok. Hopefully (not that am hoping she is ill ) its the cold and dd is settling with the new TA. Could also be them gearing up and getting ready for the phonics test. They say that the children shouldn't know thag they are being tested but it does seem that theres alot of pressure there too.

We have the Social worker coming friday again. Otherwise no one else. Sendiass probably don't even know whats going on i haven't had chance to update them which i probably should. They missed the last meeting as his car broke down. No one else seems to care and the school are no longer responding to any of my emails.

Harley you have so much on your plate, you're doing an amazing job.

DS is doing pretty good at the moment. I feel like everything else is getting on top of me - in particular going to the SEND Tribunal next month for me nephews (appeals against refusal to issue EHCPs following successful appeals against refusal to assess). I really think that we have a strong case but I am worried that my best might not be good enough and wish we could have afforded professional help.

In better news DS's toileting at school is much better. So far this term he has only had one day with accidents - this is the best he has managed at school but don't want to get my hopes up.

Fingers crossed it will be OK dimples. It does sound from what you've said here that you have a very good case, so I really hope that turns out to be enough. In any sane world it should.

Amazing news on DS accidents! Hopefully that's making him more relaxed at school too - kind of a virtuous circle?

Hello everyone! Sorry to have dropped off the thread a bit, life is so busy isn't it, and it feels like minutes from one week to the next!
@Harleyisme words fail me about the whole situation! You're doing such an incredible job, but it sounds so hard. How ridiculous of the school to suggest a really strict approach when surely that's the opposite of what works best for asc kids?! My DS has no desire to 'please' adults and so doesn't really get motivated by that, he's driven by logic and reassurance, so I always try to make it seem like something is his idea! And once he's into a routine, well, I think we all know how important routines are to our kids! I think these teachers should have some autism training, honestly.
@dimples76 exciting news about the adoption! Good luck with it all! Very brave of you!
@LightTripper hope all is ok with your DD. Changes in TA might have an effect I guess, not necessarily a bad one, but if she's anything like DS they just notice so much more. DS recently found out about spot the difference puzzles in a cbeebies magazine. So he, in his unique way, has decided to spot differences randomly although I have explained quite a few times now that spotting differences really is only a game to play with pictures...so we were out the other day, and he said 'that lady has a red hat and that one a green one - DIFFERENCE!' looking pleased with himself. Which was funny...until the eleventy billionth time!
Sorry if I've missed anyone, hope you all have great weekends, with a little time for some self-care and relaxing! DH and I are planning a date night all being well, the first for some time, so I hope it actually goes off! Took DS for his vision test yesterday as he wouldn't do the one at school. The optometrist was fab with him, although her usual ooh hello xx let's play patter didn't really impress DS! He managed it all though, I suspect due to being bribed with a Costa lunch! I got him a doll's pram for his little baby dolls too, so I'll give him that later. We actually got proper counting last night and some letter recognition so that's good. I never got a proper reply from English Heritage about their asc training though!

Little did you hear from the people that went in to see dd at school?

Light what a shame that dd’s TA has changed. I hope she’s coping ok and that the new TA is good too. Did you and Dp enjoy your evening out?

Furry I hope dd is coping with the loss of your dog.

liv I hope dc are still relaxed!

Harley I’m sorry you’re going through such a difficult time with everything. Have you been to your GP to ask for support for yourself? I agree that the stern approach is not the best for a dc with anxiety. I would say that his anxiety needs to be acknowledged and contained (in Philippa Perry’s terms), not dealt with harshly. I also think you need to task the SW with getting things done. Make sure she has actions that are going to help you and your family out - such as speaking to the school and instigating change - not just coming round for a cup of tea and a chat. There’s a place for that but you need more from her.

dimples great that ds’ toileting is going well and that he’s in a good place. You have lots of experience so I’m sure you will do a good job at the appeal. Fingers crossed for you.

Lottie great news that the vision test went well. Enjoy your night out this weekend.

danni how was ds’ birthday?

Ds has had a much better and more settled week at school thank goodness so hopefully no need to see SENCO next week and we can just see them around parents evening in Feb as I wanted to. We do have a class trip coming up which I am a bit apprehensive about but it is much closer than the previous one and only a couple of hours so hopefully more manageable and certainly easier to get back by ourselves should we need to.

Hope that you had a good evening out Lottie.

Light it's tricky with the TAs isn't it. It's a real shame after doing the course too. DS has had the same one since he started school and I'm worried that he is overly dependent on her. Before he started school EP had said that the role should be shared but she has always been his classroom TA (although when he has interventions it's normally a different TA).

Open I'm glad that DS had a better week and hope that the trip goes well.

@dimples76 i really hope that your nephews tribunal goes well. Sounds like you have a great handle on it and i bet you will do great.

@LottieBalloo i hope you managed to have a great date night with dh.

@Open really glad that ds has had a better week i will have my fingers crossed for yous that its a sucessful trip.

School have took it all up a notch. They say that the Wednesday wetness and soiling couldn't be helped as the staff were dealing with a health and safety emergency and say he had been to the toilet 3 pervious times during that time. Ds came out of school stating he was desperate for the toilet Friday so i asked him if he'd just been and he said no i never go on the way out school say he does. Ds is still addiment that his toileting visual aren't up at school but school say they are.
School have apprently spoken to the private ep they get to come into school about ds now they didn't ask permission first, the ep has never meet ds and never spoken to anyone but the head teacher so he has taken all of his advice given from the head teacher. Apparently ds will be going into school monday and being told he will be staying till dinner time. Ds will not have any say in all of this neither will we. We are told we are not to tell him nothing till hes there at school and hes not to be prepared for it apparently to lessen his anxiety. Apparently he will be in school full time by February half term and that if ds trys to negotiate or get out of it hes to be told thats hes just like every other child and he has to do everything like anyone else. Apparently ds is high functioning woth only soiling issues who needs no other support. I have questioned the use of high functioning as no where in ds reports or letters does it state that hes high functioning and that its such a damaging term. I also pointed out concern that they say he doesn't have other issues he clearly does. Not sure how things where left with the social worker. She came again Friday she could see that ds wasn't good. He was exhausted he always is after school. She spoke to ds about his dislikes he was willing to talk about everything till she got to school he become very visiblely uncomfortable and tried to shut the conversation down. She did get out of him i know sometimes i have to do somethings i don't like and schools important my mummys told me. He then refused to engage with her again and kept saying talk to my mummy.
She spoke to me about the ep and the events following she didn't seem happy but didn't say much. She hasn't booked to come back. She hasn't left me any suggests at all. She was more concerned about going to school and tell them her suggestions she said. She said she wasn't happy about the lack of communication they have with me, how they make me feel and she believes the eps suggestions are not good for a child with autism she doesn't understand why school are being as they are when i got him from 1 hour to 1 half hours a day over the course of the last 2 weeks. School say its not happening quick enough.

Ds is soiling and wetting constantly and now punching himself in the head and hitting his head on the wall he even pleads with us to punch him as he deserves it. I am booking a GP appointment monday as i am so worried about ds's behviour.

Oh and forgot to had if i don't comply and do as they say they will get the education welfare officers on to me as they clearly didn't get what they wanted from the social services involvement. I am also not supposed to ask for written confirmation of things like the ep suggestions or question them as apparently this is a distrust of school.

Sorry a bit behind with replying!

Harley what a nightmare. Have you heard anymore about your ECH needs assessment request?

Light hope dd was ok for the rest of the week with the new TA.

That's great about the toileting dimples. Good luck with the tribunals.

Love the spot the difference Lottie. Hope you had a good date night.

Glad ds is having a better time open. Yes we've also got a school trip coming up soon, always dread them!

We went to visit the new school last week and ds loved it. To be fair what is not to like about a sensory room, massive playground and soft play. He did not want to leave. They said they will let us know Monday if/when ds can have a space. Really nervous of the wait. Also still worried that the LA will somehow not let it happen. Just letting anxiety get on top of me really!

@livpotter Appeal will be heard between end of March and beginning of april. LA havent answered to it yet they have till the 31st of january. The sendo we had has be made to step bavk and another sendo has been put on the case. They say this is becuase this sendo is the one that deals with tribunals but this never happened for last tribunal and the LA were aware of the appeal in December they were hoping i think to convince me to stop in the last meeting and haven't managed to do so so put someone else on the case. I do wonder why they have spent so much time and effort trying to stop us from appealing.

Thats lovley with the school and ds liv i have my fingers crossed that a place comes available as soon as possible.

Thanks harley.

I really cannot see how they could possibly win the tribunal with everything that's been going on. I hope the LA back out before the tribunal date as that is a long time to wait for your ds.

Harley the school need to realise that ‘high functioning’ does not equal neurotypical. If it did he wouldn’t have a diagnosis of autism, these are not handed out lightly

liv I’m glad ds liked the school. Hoping it’s good news for you tomorrow 🤞

We’ve had a good weekend. Play date yesterday which went pretty well and swimming today, we haven’t been for a while. It was busy and lots of splashy dc but good fun and ds behaved well.

Liv fingers crossed that it's good news for the school.

Harley my nephews' school has been v obstructive throughout the EHC process. At first I couldn't make sense of it as we're fighting for extra resources for the school to help the boys. I think that they do not want to be obliged to provide the support and want to be free to choose where to allocate resources. We have just learnt that a child is joining my nephew's class (he was in a special school overseas) and the TA who had been supporting my nephew (just for an hour or so a day) is now only going to be working with the new boy. Aaaagh!

Glad that you have had a good weekend Open

We were at a party this afternoon and DS did really well - phew!

That's a very good way to put it open. Glad you had a good weekend! Ours was slightly exhausting but both kids did well! DS is ill and back in my bed though - gaarghhh... Need to get back on it this week.

Harley, I think all you can do is keep everything in writing (there's a reason they are trying to bully you out of keeping written records and asking them for things in writing), keep it all civil and grown up from your side, and then if you ever need it you have a paper trail of their failures and all your efforts to get him the right supports.

Great news about the party dimples! We had one at the weekend that I thought DD might struggle with, but actually lots of the kids weren't interested in the main activity either, so they all played together (including DD) and it turned out to be good! Very annoying about your DS's TA though.

Hmmm, I think it was clumsily worded Light. I should have said ‘is not the same as’. I hope you all know me well enough to know that I would never think our dc are not equal to NT children or imply any such thing.

Glad to hear dc doing well at parties and good weekends.

Ds said early this morning that he didn’t want to go to school today but he was fine when it was time to get dressed and go. Hopefully he’ll have a good day.

It must be so nice to be a parent that just turns up for school pick up with no apprehension about how the day has gone.

Ha, I didn't even notice open! I think because it seems so obvious to me that NT isn't better than ND it didn't even strike me to read that intention into it. I'm sure nobody else in this group would either, don't worry!

Arrrgghh! I had just wrote out a reply to everyone and lost it. I will come back later and reply again. Hope everyones well.

Ds got the place! He will start there after the Easter holidays!! I cannot believe it's actually happening.

Light I feel your pain, dd still ends up in bed with us most nights.

Great all the various parties went well.