Primary school auties: summer and beyond - thread 5

[openupmyeagereyes]

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

Thread 4
www.mumsnet.com/Talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4

Belated happy birthday to your ds Lottie, a Blippi rainbow unicorns theme sounds fab . Ds still watches a bit of Blippi occasionally. Currently he’s enjoying Frozen. Enjoy your glamping. I’m tempted by a wobbel board now...

We had a tromp one the woods this morning. I’m trying to get myself motivated to do a workout dvd before lunch.

How is everyone?

We have just returned from a week away. It went really well but as usual with DS he seems to cope well/enjoy changes in routine and new experiences at the time but when we return to normality finds it hard. In the three days since we got back toileting accidents have gone through the roof.

Feeling a bit worried about the return to school next week. DS will be in his new classroom with his old teacher on Weds and Thursday and then new teacher from Friday. I worry that this will confuse him. We are fortunate that his TA from Reception and Year One will be with him though.

Hi dimples glad you had a good holiday but sorry ds is unsettled afterwards. Hopefully he calms down soon, the toilet accidents must be awful to deal with. Does he get upset or is he not bothered? What day does ds start back at school?

All ok here. We had a good day yesterday though went to an outdoor thing that felt far too normal and I’m worrying a bit. It was outside but fairly busy which I wasn’t expecting. Hopefully all will be well, he had such a lovely time after months of doing next to nothing. We had another park meet up with some of his classmates this week which was lovely too. He seems to have matured a bit which was nice to see.

Our SENco has sent through several social stories about going back to school including one with photos of his new classroom. I’m sure he will not be interested in these but we’ll try. She is also calling me tomorrow and I have a Zoom with her and the new teacher before he starts back. I’m trying not to worry but it’s less than two weeks away!

Oh, and have draft EHCP to review.

Open he really doesn't care about the toileting accidents. He does not seem to feel uncomfortable wearing wet or soiled clothing, he's not bothered when occasionally I get cross or upset about it and he's not interested in others' views. Essentially he has no motivation. Based on CAMHS advice I tried to use rewards but they did not help. I asked him last week if anyone had ever teased him at school about it and he was really shocked that I thought that anyone would 'do the wrong thing like that'.

It's good that you have been able to meet up with classmates and that you can see your DS maturing. DS is back on Wednesday. I am particularly anxious about how the new drop off and picking up systems will work.

Ok here. DS's last day at nursery and I'm working on staying calm about nursery ending and school starting.

@dimples76 - that is tough. Hard to know what to do if bribes don't work and kid isn't bothered. On the other hand, I love his being shocked at the thought that other kids might tease him.

Ds is back Wednesday, the other kids go back a day earlier but his school phoned before they broke up to ask me to keep him off the first day back as it would confuse him going into his old class just for 1 day.

I mean he’s just had 7 weeks off so what’s another day 🤷🏻‍♀️ 😂 I do think his school are a bit cheeky asking that though, I get it will confuse ds but that’s for them to sort out not ask me to keep him off for the day, it is surely discrimination no matter how I look at it, they wouldn’t allow any of the other parents to keep their child off school, the parents get harassed for being a few minutes late usually, yet I’m actively encouraged to take ds in as late as I want?! Lol.

He’s been quite well behaved this summer holiday if I ignore a few mishaps. He lost another tooth yesterday, his third one and he looks so cute, he’s getting really grown up I said to him earlier when we were doing his leap frog globe thingy, ds use the pen and point to United Kingdom he said it’s actually a stylus 🤣
I say to him some nights ds you don’t need a bath tonight (he fucks about too much drowning my floor and I can’t get him out as he refuses it’s such an effort) so I usually do every other night and quick wash him if I can unless he really needs it on the night off, so he’s started questioning why I don’t bath him every night as he loves super soaking my floor and always wants a bath so I’m trying to explain in simple terms to him, so I just said look ds some nights I just can’t be bothered, so of course, we went to Tesco cafe this week, ds says at the counter to the man serving us, REALLY LOUDLY my mum can’t be bothered to bath me 😆 cringe or what.

His behaviour does seem to have improved a bit, still a lot of work to be done but I’ll take it. Honestly anything is an improvement. Last summer holidays were ghastly 😳

I have his annual review by video call Wednesday afternoon. That’s when the school want a desicion from me on the special school, but I haven’t been able to look around the SN school, I’ve managed to talk to them today finally but receptionist was still giving it the ‘coronavirus spiel’ as to why I still can’t go look around.

Which is fine, but I’m not making a desicion on sending my son to a school that I haven’t been able to a) look around & b) actually speak to any member of teaching staff

So ds can stay were he is. I’m not making any desicion for Wednesday, they can do an emergency review later in the year if they want him out that badly. Whatever.

And this ‘special school’ apparently treated the parents appalling during covid and didn’t have any of the children in due to ‘risk assessments’ I spoke to a mother with a child there.

Think I’m going to try keep ds in mainstream as long as possible. He’s not learning masses but he’s happy

What do you think? Such a desicion because I don’t want to make the wrong one 😩

He has his new 1-1 from next week, he doesn’t realise I don’t think even though I’ve told him loads.

He said earlier what does miss xxxxx (old 1-1) sneak into my lunch box? I said I don’t know ds what does she sneak into your lunchbox lol & he said baby Easter eggs (she always put 1 in a day if he ate some of his pack lunch) so I said but ds remember you don’t have miss xxxxx anymore you have Mrs xxxx now and he looked really 😳 and said no I have miss xxxxx and put his hands over his ears because I was saying what he didn’t want to hear (he does that a lot, anyone else? Soon as it’s something he doesn’t want to hear he hums and covers his ears so he can’t hear what he doesn’t want to hear!) so god knows how that’s going to go down next week at school.

Oh Danni sounds like you have a lot on your plate with school decisions. I love your story re the baths. DS seems to delight in sharing nuggets of our family life with others. I have noticed recently that some of his screaming is definitely only directed at an audience. The other day on a walk he was not happy about something I was saying but talking calmly about it. Then I noticed him spot a couple coming towards us and he kind of smiled at me and started screaming. Don't know if I am reading too much into it. I smiled at him and said that I did not feel embarrassed as I knew I was doing my best to be a good Mum and he actually stopped screaming.
So hard to know what's for the best in terms of Mainstream and special school. I don't see you can decide without more of a dialogue with SS.

Orinoco I was a nervous wreck in the days leading up to DS starting school. It must be even more stressful in these times. I think for DS and most of the other children on this thread it went far better than expected.

Thanks @dimples76 - that helps.

dimples I hope drop off/pick up goes ok and that ds’ toileting improves with the return to school. at performance screaming though.

danni no way I would send mine to a school I hadn’t visited or met with the head and SENco. Don’t let them push you on this. I hope the start of term goes smoothly with the new TA. at your ds’ exploits, great that his behaviour is improving.

Ds puts his hands over his ears when he’s unsure about something.

Orinoco as dimples said, the start of school was absolutely fine for us even though I was terrified. School hasn’t been without incident, we have had periods of refusal for instance, but so far it has still gone better than we worried it might. So much is dependent on the staff and ethos of the school.

That said... I am worried about the impact of the new rules and procedures. He is going to struggle having to stay in the classroom and not having movement breaks outside the room.

for all the reception starters this year.

I hope everyone had a good first day.

Ds went back to school today, he’s been fine, his 1-1 at the end of the day said he’s had a good day.

I’ve had ds annual review today, it was 2 hours long, never usually takes that long but anyway, ds is deffo going to special school.

They’ve said today they aren’t meeting ds needs and it’s not fair to keep him at mainstream anymore. Quite sad actually, the staff genuinely love him they said today he’s adorable and they love having him but they are doing him a disservice keeping him. They felt bad telling me this I could tell. But he’s barely in the classroom in fact he pops his head in for a few minutes at a time usually swipes something off the table and goes again 🙈 he spends most of the day outside or in the corridor refusing to go in and if they do get him in he’s disruptive (because he can’t cope with being amongst all the other children) they made it clear ds isn’t disruptive for the sake of it it’s because he’s struggling with everything going on around him.

They said he’s having to have a lot of 2-1 now aswell & his funding barely covers the 1-1 (he has maximum banding on his ehcp in our LA for a mainstream school) and they are in consult with the LA for more funding even though that’s not what usually would happen.

The special school that ds would go to (the one my sister in law worked at - the one I’m not keen on from what I’ve heard, but haven’t yet looked around to make my own personal judgements as I can’t look around due to covid!) is full to the rafters and they have a long waiting list. The head / senco checked with the LA yesterday and the average wait is about 12-15 months based on recent admissions 😩😩😩 also this special school is 3 adults to 8 children per class and as ds needs constant 1-1 even they may not be able to accept him to meet his needs because it’s not actually 1-1 in this special school.

Ds can stay at this school for year 2 but won’t move accross the road to the juniors so I was advised today to look for an out of borough school aswell.

He’s not met his ehcp targets for a second year even though the staff have done everything they could to help him. These targets were set in 2017 and each year are carried over and simplified down but he’s not meeting them. They listed everything they have done to get him to meet them and even during lockdown they were ploughing through his targets each day but he’s struggling big time.

They said the danger awareness etc is the biggest issue and this is why he needs so much support because he needs shadowing for his safety.

I’ve got sendiass phoning me Friday to see how today went so I’ll have to ask for more advice because I’m clueless. The school he’s at now inform me of what they can but she said today they don’t know the ins and outs of everything so I feel a bit stuck what to do next?

Also his progress is limited, they said his speech has improved but any progress he’s made has been very limited.

Also salt sent us and school a report and she’s diagnosed ds with a speech disorder now on top of his asd.

Sorry I’ll be back later just going to do ds tea and sort him out x

Sorry didn’t make it clear, the school ds attends now is an infants school only, the juniors is across the road, complete new staff / school etc. Weird set up really!

But he’s not going across to there for year 3 onwards so I have a year to get ds a special school!

Any advice for me? X

danni what a full on day. So much for you to take in and think about. Some of it must have been hard to hear. I don’t have much advice I’m afraid but I would think that 1:1 support is probably less necessary at the special school because it is more set up for higher needs children - safer equipment, locks on doors, sensory tents and areas and safer outdoors spaces. That sort of thing. That said, I think some children do still need 1:1 but the staff will hopefully be able to spot that quickly if it’s necessary.

I hope you can process it all a bit over the next couple of days

My plan of action (so far)

Tonight I’m listing all the Special schools within an hours (?) distance not sure how many that will add to my list but I’m emailing every one of them (I would rather email first, write an essay of everything I’ve written here and see which ones are brave enough to phone me back) LOL then I’ll take it from there regarding booking visits if they think he sounds suitable.

Sendiass are phoning me Friday morning so I’ll discuss everything with them and ask for advice.

I’m also going to keep looking online for an ipsea phone back appointment, I didn’t phone them when I mentioned it on here before because that was about school hours and that got sorted so I had no real reason to ring them then.

I’ve got the Sencos email now, usually I would just speak to her at school but she said email her whenever I need too (haha! I’ve already emailed her once since the appointment today) so I’ll ask her anything I’m unsure of.

Not sure what else I can do, at least he’s got a school place for now and he enjoyed today in his new class and he’s been fine with his new 1-1.

Although there has been a change of plan and he has a new 1-1 starting in a fortnight who will have him full time but she’s a 1-1 he had last year in the afternoon, she left mid way through the year and is coming back and they told me she’s going to be with ds fulltime but at least he knows (and likes) her. But he was fine going back today so always a good start!

How’s everyone else get on today?

open has ds gone back? x

The LA Ed psych apparently went into school in March (not for ds, she hasn’t actually seen ds for over 2 years since he got his ehcp) but whilst she was there the Senco spoke about ds with her and how his needs have changed and she was in agreement that ds does need to move and she was on the schools side, so the senco did say there will be no problems accessing a SS for ds, as the LA decision is guided by the Ed psych and she has a lot of weight with her reports..

Our LA are shit on a whole, my friends non verbal son was refused a special school for ages he was in a mainstream until half way through yr 3 with next to no communication and no speech! I can remember thinking Jesus if they can refuse him. He has moved since thankfully but I can’t believe they battled his mum for so long..

I’ve emailed those schools.

They’ll let ds in but I reckon I’ll be told to stay at the gate 😂

I get a bit carried away when I’m typing, I’ve read the emails back to myself but after I’ve sent them, basically ive had a full one sided conversation to the person reading it 🤣🙈

Anyway it’s done now!

Ds has gone to bed ok tonight, he’s not eaten at school again but did use the toilet twice today which is good because he didn’t use the toilet for months before they broke up.

I’ve looked at his school picture I took this morning and compared it to 2 years ago todays picture on his first day of reception, he’s growing so quick he looks like a real little boy now with all his missing teeth.

Danni, wow a rather stressful week for you. Good luck with the school search.

DS went back yesterday and so far so good. He was probably the most communicative ever about his school day last night. It feels so strange without him. Unfortunately DD seems to be going through a sleep regression so as one worry is dealt with another problem emerges.

danni it sounds like you’ve been very organised and proactive. I wouldn’t worry too much about over sharing, I’m sure they’ve heard worse Have you heard back from any yet?

I actually just watched the new Nurturing Neurodiversity video on why they have chosen a specialist school for their son. Honestly I had a few tears wondering if we have made the right choice sending ours to mainstream.

Of course our ds is very different to theirs and I think we would have struggled to get a specialist place for KS1, but I am worried about the impact of the Covid changes and how he will manage. I think that if it’s a wet day, so no outdoor play (he doesn’t like getting wet anyway), he will be stuck in the same room for 6 hours with 28 other children. I just don’t know how he’s going to cope. I don’t know how I would cope!

dimples glad things started well. Hope dd’s sleep improves soon.

Hope everyone is getting on ok. You sound very proactive @danni0509 well dine, so much to think about though!
I'm worried about that aspect too @openupmyeagereyes as the sensory room will be closed but apparently there will be sensory breaks and sensory provision...just need to find out what!
Teacher is phoning us next week and we're putting together a doc of what we've done over the summer. DS has gone from not reading at all to reading level 3 books and barely counting to 10 to counting to 100 and learning his 2 times tables...he always develops in huge chunks like this but at school he has a habit of saying the wrong answer for a joke...so unless you know him you think he really doesn't understand argh!! And he struggles massively with classroom sensory overload. We're waiting to see who his 1:1 will be and how many hours. Should hopefully find out during phone call with teacher next week. Got his hair cut today so at least that's done! Next Wednesday, we have a parents and kids stay and play, then Friday just for the kids for 90 mins, then they do mornings the following week (which obv is v confusing for DS who likes things to remain the same).

Lottie I hope ds settling in goes well this week.

Dimples I’m pleased ds got on ok. Hope dd sleep settles down how old is she now? I know what you mean about one problem resolving and one starting.

Was it Liv or dimples who’s Ds went to special school? sorry I cannot remember off the top of my head. How are they getting on? How do you feel it’s different to mainstream? Do they get school transport? Do you communicate much with school? Sorry for all the questions x

Those special schools I emailed Wednesday, not one have emailed me back and the one I phoned and left a message with 12 days ago hasn’t returned my call either. Liberty! 😡 to top it off sendiass was supposed to phone me Friday morning and they didn’t phone me either and the senco I sent that email to Wednesday didn’t reply 🤣 what is it?!

Few calls I need to make this week!

That special school he’s probably going to have to go to in my town are not impressing me but I don’t suppose they give a shit it’s just somewhere your kid ends up when they have no where else to go so they don’t need to impress the parent do they. Nice to know ds will attend there until he’s 19 and they can’t even be arsed to return a call or answer an email though, I’m sure they blame it on covid like every fucker else though 😡