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

Another belter from this week, he keeps asking what words say when we are out and about.

I went to boots pharmacy and when in the queue ds asked me what the board said at the till which said viagra available here. 🤣 the lady behind me said good luck!

hahaha!

danni how lovely that your ds had such a nice time playing in the park with another child. It’s great when you meet a child that doesn’t notice or care that your child is different and just plays with them. Great too that he’s having some time on the iPad which gives you a break. I think you said before he wasn’t interested in screens.

😂 at your other stories!

We had a nice woodland walk this morning, I’m trying to get out every other day at the moment. Otherwise things are going ok so far. We’ve finished the first week of the holidays ✅

Danni what a lovely story re playing at the park.

Glad to hear that the hols are going well so far.

It was DD's birthday today and I'm exhausted. DS's first time experiencing a sibling's birthday. He was rather manic and I am certainly regretting getting the ball pool out.

dimples happy birthday to your dd 🎂. Hopefully they both sleep well tonight after all the excitement.

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I hope everyone is having a good week. Does anyone else spend a good amount of time searching the house for small lost toys?

I watched an IGTV today by Kat Farmer talking about her experience of being mum to an autistic boy, it was quite interesting.

Ds and I had a nice walk this morning, not much has been done since then. It’s quite warm today and apparently tomorrow will be a scorcher.

How's everyone doing? I have just had a lovely time with DS building and painting a model of the solar system whilst DD naps. It was rather challenging for him (the kit was labelled 8+) but he really stuck at it and worked with me. He's v proud of the result!

That sounds like a really special time, @dimples76. All ok here; DD still seems so much happier being out of school 🤭 She also went to her little friends house to play for a couple of hours while I had to go to a work meeting. First time she’s been happy to go and stay somewhere other than school. It went great though she did lock herself in the bathroom and had a meltdown trying to get back out. Apparently it took little friends dad using his Dad Voice and very firm instruction to cut through the screams of rage! Hope you are all getting on OK with the crazy pandemic/furlough/workfromhome/willschoolsreopen stuff!

Hi everyone, I’ve been watching this thread for awhile but not been brave enough to join! You all seem so friendly and supportive. Sorry if this is post is long, but it’s quite therapeutic writing it all down!

My DS is 5 in October, and starts at a mainstream primary in September, he was officially given an autism diagnosis on Monday, although I think I’ve been certain since he was about 2 1/2. Luckily diagnosis was very straight forward. He is a very happy (most of the time!) boy at home and we don’t really have too much trouble managing him- he is funny and chatty, I can’t keep him away from electronics but that’s another story. He eats and sleeps fine.

But preschool has on and off been a nightmare. He is very distressed by other children. He has a 1:1 and only attended 3 mornings, as he sometimes pulls other children’s hair or rugby tackles other kids to the floor and won’t join in group activities -he is very self directed. He gets very preoccupied with which toys belong to who (he doesn’t seem to grasp the concept of sharing or shared toys) often refused to do as he has been asked, struggles to sit still or concentrate and seems stressed out generally by other children and all this it seems leads to the pushing and hair pulling. He seems to knows it’s wrong to hurt others, and says sorry afterwards, but tends to act very impulsively. Sometimes he has an excellent day at preschool but it’s few and far between. I’m absolutely 100% terrified about September.

Preschool applied for EHCP but local authority have declined to assess as they felt his needs could be met by school, and that they advised that school could reapply if he had not made progress by end of EYFS profile. Thing is, he is a bright boy, he can read fluently, he loves maths, can tell the time to 5 minutes, can tell you all about space and which capital cities are in which countries, and which countries are in which continents and all the oceans etc, he loves music and can play tunes by ear on his toy piano, knows all the street names of the part of the city we live in and things like that. But his ability to have a conversation (away from me and my husband that does the involve one of his interests) is not too good. We have contacted mediation with regards to EHCP and will go to appeal that doesn’t work. The school seem very nice, but I don’t think they grasp how difficult it will be with him, they said they can’t place him with a 1:1, as they don't have the resources, but I really don’t think he will manage without it, I’m just dreading September.

So anyway that’s us- we also have a 5 month old baby. It’s really nice to get that all out and be able to talk to people who has been through similar 😊

Hi RaaRaaeee, welcome to the thread.

If he already had 1:1 but was struggling then an EHC needs assessment sounds a no brainier really. They’re just trying to fob you off because he’s academically fine, it’s great that you’re pushing forward.

The good thing about reception is that they tend to have a couple of TA’s, which isn’t typically the case in the later years now unless for funded support, so there will be people on hand to support him even if it’s not 1:1. I won’t tell you not to worry as you will anyway, it’s such a big transition

I can definitely relate to the issues around sharing, impulsiveness and being very own-agenda led. My ds still struggles with these things at 6.5 but I think we have made progress.

dimples glad you had some lovely 1:1 time with ds. Sounds fun.

furry glad dd is doing well and managed to escape the bathroom unscathed.

We have had a good couple of days, we had a walk in the woods this morning. After a couple of later mornings we’re back to 4:15ish starts. He was up for ages in the night on Monday night but stayed in bed and went back to sleep eventually!

We have a park meet up with classmates this weekend, first time he’s seen any of them since March. I hope it goes well 🤞

Furrycat so glad that your DD managed a playdate.
Open hope that the park meet up goes well. I feel a bit bad that I have not been able to organise anything for DS socially. At least he gets to play with his cousins who we have bubbled up with.

Welcome RaaRaaee. I had to appeal to get my son his EHC assessment - it's so frustrating (he then started reception with full time 1:1 support). As Open says at least in Reception there are generally more TAs. Hopefully, school will realise quickly what support is needed.

Not a good day here. DS has been rather manic, refused to leave the park and has been pressing my buttons all day long. We seemed to have reached a more even keel by the end of the day but then came running into the kitchen where I was mopping the floor and went splat.

Thanks open yes, hopefully as it's reception there will be more adults around and Ive heard from a local sen group on Facebook that the school is one of the better for additional needs, so fingers crossed it's not going to be as bad as I'm anticipating -I still cant help but have a sick feeling in the pit of my stomach when I think about it though! ..I hope your meet up goes well at the weekend and your DS enjoys meeting up with his classmates x

Thanks dimples- it's shocking that these LAs seem to refuse to assess, even when it seems clear that the child needs support! Gives me hope that you managed to successfully appeal though. Glad your day ended positively than it started apart from the falling over - my son is about the clumsiest kid I've ever met, so I feel your pain! x

Hello. May I join? We don't have a diagnosis, but DS will be taking his 121 funding into school. I don't know what I think about it all - nursery were very much in the lead on sorting funding. Part of me thinks he needs it, and part of me thinks maybe he doesn't. I guess we'll see.

Welcome orinocosfavoritecake.

Why did nursery think he needed support and why don’t you necessarily agree? Just curious

It’s great there are two of you with dc starting in reception. I think it will be more worrying this year with all the Covid precautions like parents having to drop and go. My ds went in via the office door every day bar the first few last year as he refused to line up in the playground. He won’t be able to do that plus I won’t be able to see him go into the building which means I will be very anxious too. Trying not to think about it...

Hi everyone, hope it's ok for me to join

I'm in Scotland so my daughter starts school on Wednesday. I'm terrified.

She doesn't have a diagnosis yet although we know she's autistic. Will be 5 this month. She's has a limited vocabulary of 2-3 to word phrases but is quiet with people she doesn't know. She likes holding an adults hand and will need guided with lunch (she's a terrible eater), will need taken to the toilet but can do this herself, if she decides the toilet isn't too strange and will need help with everything.

Schools here had been set up for part time learning with half class size for 2 days a week and announced last week they would be going back full time. The deputy head I had been speaking to has now left the school. I've emailed the head to ask for their planning for her now and have heard NOTHING back yet, this was last Friday. The smaller classes and 2 days per week would have been beneficial. It's a mainstream school.

Shes getting no extra support other than the TA time for the full class but I don't know how she will cope.

I can't stop crying.

Hi orinocosfavoritecake and pocahontasMcGinty. This starting school business is very stressful isn’t it?

PocahontasMcGinty- surely they will have some sort of settling in plan for all the children? They can’t expect them all to start full time straight away surely? Fingers crossed the school will be in touch soon with a plan- don’t they usually give the parents and children a chance to have a short meeting the teachers before they start? I’m sure something like that will be put in place- even if it’s all a bit last minute because of the changes of plan around arounds attendance and the deputy head leaving. Try not to get yourself too stressed.

I hadn’t even thought about drop off open- what a nightmare- maybe they will do staggered drop off times to prevent the queuing and lining up to make it easier? Fingers crossed.

Hi @RaaRaaeee @orinocosfavoritecake @PocahontasMcGinty Welcome to this lovely thread! Sounds like you’re all on quite stressful times at the mo with schools starting. I hope it goes as smoothly as it can. There’s lots of advice on here which I’ve found helpful to navigate support at school.
My poor DD is having a very wobbly week though I count my blessings as her vocabulary grows. Her brain has burnt parsnips in it, apparently... that’s how she’s describing her feelings this week. I’m not quite sure of the NT comparison but she’s physically very tense and not sleeping well, is clingy and very ‘small’ when we’re out. It’s sad when I hear her say “is the world always this scary” in her teeny 5 year old voice. Massive cuddles and lots of book readings are in order for a while.
Hope everyone else is doing ok.

@opeunupmyeagereyes - He struggles to regulate his emotions, tends to play with only one best friend, runs off and has a very spiky profile academically - in some areas he's an average four year old boy, in others he's far far ahead.

I do see their point - am not completely deluded!. I suppose it's that he's come along so much especially in the past six months that I hope he'll be okay in school. Or it could all come crashing down.

@RaaRaaeee, your kid sounds adorable.

@PocahontasMcGinty Start of school is stressful as hell. Is there anyone other than the head you can email?

Hi @furrycat1978 sorry to hear your daughter is having a bit of a wobble this week, that's good that she is able to articulate it so well though bless her. I hope she starts to feel better soon.

Thanks @orinocosfavoritecake - he is a bit cute when he wants to be, he makes us laugh anyway (except when he tries to bash other kids of course 😩😩🙈) ..Sounds like your little man is doing really well - I suppose it's better they start with lots of support and take it away if he manages fine rather than the other way around? Is his little friend going to be in the same class when he starts school? x

@RaaRaaeee Just idly looking through posts and noticed your LA have turned down the request to assess.

I wouldn't bother with mediation. They normally have 30 days to arrange but as the timescales have all been relaxed because of Covid they could take longer. and if it doesn't work you are then going to be at least another 4 or 5 weeks further down the line.

Far better to register the appeal now. Registration is taking about a month at the moment and parents are getting hearing dates for December /January.

There's nothing to stop you still trying to liaise with the LA even though you've appealed. Not all appeals go all the way to a hearing and very often LAs back down once you appeal, especially with refusal to assess.

Thanks @Ellie56 - I spoke to sendiass who advised exactly the same! So yes I will definitely go straight to lodging an appeal and also gonna try and meet informally with LA with sendiass there to tell them I'm appealing and hopefully they will back down. He has a diagnosis now as well so hopefully that is further evidence in our favour. Fingers crossed! Thankyou x

Hi all the new people, my DS is also going into reception in Sept (repeating the year) and this time we have a diagnosis and a much clearer picture of his needs. It's so worrying isn't it. Make friends with the senco if you can! We have no formal funding yet but DS was getting some 121 with a ta as he just can't access the learning without it - he gets sensory overload in a busy classroom. They have a sensory room which he used to love but wont be open next term due to covid restrictions so I'm wondering what other sensory breaks they can provide. He also needs help to recognise when hes too hot or cold etc. Especially at school as, due to sensory overload, he often misses those sensory clues from his brain about temp regulation. He is much less verbal there too.
@danni0509 how great about becoming interested in words! We've finally had some of this from DS, mostly about billboard adverts and special offer deals at petrol stations, so now st home he keeps pricing stuff up (eg our garden chairs apparently are 4.99 for 3 but only after 11am!)
@dimples76 happy bday to your DD and that sounds lovely making a solar system model with DS. I think, because we know how hard it is for our kids to sit and concentrate to make something tricky, it's even more wonderful when they do.
DS surprised me yesterday by going for his school shoe fitting with minimal issues, although I did promise chocolate buttons as a bribe! Hope everyone is doing ok in this heat.