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Primary school auties : spring 2021 and beyond - thread 6

999 replies

danni0509 · 15/02/2021 20:57

Hi. 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

Everyone welcome x

OP posts:
LightTripper · 20/05/2021 16:57

That sounds very positive progress from DS @danni0509. That seems really quick to be seeing progress - well done DS!! Given the huge upheaval it's really good I think, and great that the school are unfazed and not blaming DS for it like his old school would have done IYSWIM. Hopefully you'll get more of an update at the end of the week?

It's tricky with the 1-1 isn't it? Hopefully by summer he'll be settled at the new school and he could see her without being disconcerted. I guess I'd just play it by ear and tell her you're keen that he gets settled at the new school first and they think that might take a while, but you'll send her some updates? If you did it early in the holidays I wouldn't have thought it would have too much impact on his views on going back in September?

Great to hear from you again @orinocosfavoritecake!

Sounds like very annoying behaviour by the school @MagratGarlikInDisguise. Sort of passive aggressive to approach you so late and then without any practical proposals other than punishment which will unsettle your DS even more. When does he start at the new school? Have you still got the rest of term to go at this one?

Well done to your DC for managing to go into school @livpotter and @openupmyeagereyes!

DD seems to be doing well at the moment. It's nice to have nothing to report really! I am a bit anxious about the school transition in September - probably more than DD is! We're trying to set up a visit in the next half term so that DD can see the school before she's actually there, and then do some kind of "all about me" sheet for her new teacher.

It's been nice working less too. I spent some of today helping out at a food bank that was short of volunteers last minute, and some of it attending an online autism conference... I should really have been sorting out my shit-tip of a house instead Grin but it was a good day! Did do a little bit of sorting this afternoon but it's still at the point of "worse before it gets better" Confused ...

openupmyeagereyes · 21/05/2021 06:49

Light glad dd is doing well and that you are enjoying having more time to yourself. How kind to help out at the food bank.

We are doing ok. School seems to be going well and sleep is up and down as ever. We saw my parents inside for the first time yesterday and it felt very strange and not entirely safe!

dimples76 · 24/05/2021 20:54

How has this week started for you all?

We got off to a bad start today as we were just about to set off for school when I realised that DS had wet himself - his entire uniform including school shoes were soaking. By some miracle we made it to school on time and then I took DD to her first swimming lesson which was lovely.

MagratGarlikInDisguise · 24/05/2021 21:17

Just done my online yoga class so that was nice! DH had to call me back from walk with a friend last night as DS getting really hyper and throwing water everywhere not listening to DH so I'm glad he let DH do his bedtime tonight hassle free ish. Getting back on my alcohol free vibe tonight after a few wines with Eurovision so I'm having a funky tea! Only 4 more days until half term and by then it'll be mid June and feeling a lot closer to summer hols and Sept!! DS said he was happy today at pick up but keeps asking when he can go to the new school.

MagratGarlikInDisguise · 24/05/2021 21:18

Sorry @dimples76 posted too soon! Poor DS (and you) but well done on the timings. DS had a wee accident at the farm we went to at the weekend because it was 1 family at a time and he had to wait (and he leaves it so late...) cue total outfit change standing next to the car!

openupmyeagereyes · 25/05/2021 09:23

Ds is refusing to go to school today. This has been simmering for the last few days.

livpotter · 25/05/2021 09:44

Yeah not a great start to the week here either. Very bad morning getting ds in yesterday and we nearly had another meltdown this morning. Bring on half term!

openupmyeagereyes · 25/05/2021 10:31

Yes. It’s a shame it’s only Tuesday rather than Thursday or Friday though!

livpotter · 25/05/2021 12:12

Totally open!!

danni0509 · 25/05/2021 14:14

Dimples sorry about ds wetting just as you were leaving for school I’ve had many of those moments when you are like a lunatic trying to still get them to school on time, glad dd had a good swimming lesson.

Sorry everyone’s having a shitty week. Had an awful weekend with ds deliberately pissing on his bed every opportunity he could, I have loads of sets of bedding and I was going through it that quick I couldn’t get the washer / dryer to work quick enough, he kept running into his bedroom pulling his pants off and weeing. He had a weekend of non stop tantrums aswell. Drove me flipping mental! I think I spent the whole of Saturday night crying!

Yesterday he pulled his pants down in the classroom and purposely did a pooh on the carpet and then once they sorted him out he kept pulling his pants down and weeing on the carpet.

Good news to report today though!

Ds teacher came out just before ds at lunchtime to speak to me and said he’d had an amazing morning, he was a bit naughty to start with but I knew about that as it was when I dropped him off (running off from his teacher, throwing stones and being difficult to get off the carpark) so I did worry when I left how he was going to behave today. But he did lots of maths work, fractions / addition / subtraction. He earnt 5 stars and got to choose 2 children from the class to play outside with and played really nicely.

He’s played with the children at break time yesterday and his teacher said he absolutely loves to play chasing with them and they like to play with ds 😍

He managed 20 minutes in the classroom this morning which is the longest he’s managed so far and by September his teacher hopes to have him full time in the classroom. He’s still having 1-1 and 2-1 to collect him and bring him back out but teacher hopes once ds is fully settled into his routine and understands the expectations he can have that stripped back a little.

He’s going in at 9.30 now instead of 8.50 because at 8.50 the buses are arriving and it was too much going on for ds so for the rest of the week he’s on 9.30-12.30, half term next week then 7th June hes 9.30-2pm with his transport but he’ll technically be out the house 9-2.30 with travel time added.

His teacher has spoken to me every day and says ds needs to learn his actions have consequences and then they’ll be able to move forwards he says ds doesn’t fully understand that yet.

Plus he said because ds is so controlling and because he can’t control the staff like he did at the old school, the uptick in him deliberately wetting / soiling is something he has full control over and ds knows that hence why he’s doing it.

Makes sense.

OP posts:
danni0509 · 25/05/2021 14:20

Ds literacy work is him writing an ‘all about me’ his teacher said it’s used for his annual review and ds writes it all himself.

He said they spend a lot of time on it and it’s the main piece they use for the review every year.

I thought that was lovely!

OP posts:
LightTripper · 25/05/2021 17:55

That sounds really promising @danni0509. Sorry you and DS had a difficult weekend, but at least it sounds like he's getting some positives out of it too - lovely that he is making new friends and finding some of the work engaging enough to be able to stick with it despite his lack of classroom experience - go DS!

Sorry there are lots of tricky weeks going on. Is everyone on half term next week?

dimples76 · 26/05/2021 07:11

MGID when does DS start new school?
Open and Liv hope that the school refusal/morning meltdowns pass. You can definitely tell it's time for half term holidays. DS is having toileting accidents right left and centre.
Danni I don't know how you cope with the deliberate weeing and pooing - the accidents drive me mad. But great news re progress at school and playing chase - how wonderful!

DS's teacher got in touch to query if DS is having absence seizures. Years ago his portage worker queried the same. We have a paediatrician appointment coming up so will mention it again. I don't actually think that it is that - I think that it is more sensory freeze mode. Strangely (given that we're not biologically related) I had absence seizures or petit mal as they were then called as an adolescent.

Every time I think of half term I get excited as we're going to see my sister and BiL who we haven't seen since August due to lockdowns. Then I remember that I have a 5.5 hour drive with DS and DD and then the 3 of us are sharing a hotel room. Then I feel exhausted!

MagratGarlikInDisguise · 26/05/2021 12:35

The literacy work sounds lovely @danni0509 sorry the weekend was so hard.
@livpotter yes finally half term next week!
@dimples76 he starts in September! Had a call from his new teacher today to organise a meeting so things finally seem to be moving. He got his funding approved too so good news although we apparently live too close for transport so I'll have to arrange taxis etc. Just can't wait now to make the change and hopefully get him settled somewhere with proper support. But first, summer!

danni0509 · 26/05/2021 14:15

Dimples when ds turned 5 he got referred to the epilepsy clinic for ‘absent seizures’ It was his reception teacher who said he kept zoning out / staring into space etc and he kept going floppy on the floor and she wanted him taking to the gp then the gp referred him.

The neurologist said it’s typical in Autism for a child to zone out and he didn’t need any further action with ds (he still does it now) and the floppy thing is behavioural (ds being difficult) but obviously always worth checking for absent seizures just incase.

Magrat how many miles do you live from the school? That’s ridiculous that transport isn’t included although I do know it has to be more than 3 miles here or your expected to take / collect yourself.

Ds school is 20 miles each way. Do you drive? If you don’t and you would struggle to walk ds or you need to be at another school / work then phone them and see what they suggest.

Ds came home with a certificate today! It says for being tremendous 😍 his teacher said he’s been amazing again today.

OP posts:
danni0509 · 26/05/2021 14:18

Thanks light. Yes we are on half term next week.

Got ds booked for soft play for Saturday morning then driving to the aquarium for Sunday. Have you got any plans?

OP posts:
MagratGarlikInDisguise · 26/05/2021 17:30

Terrible walk home from school. DS hyped up and trying to hit / crash into me and other people in the rain...I got cross as so worried which made him do it more. It was busier because he came out a bit late. He said sorry when he got home but I've made him start again with his star chart as I've got to do something! Honestly, going to school has caused just so much stress in our lives generally. Starting to wonder if I just start getting taxis now. Might see how it goes after half term.

MagratGarlikInDisguise · 26/05/2021 17:31

Sounds like lovely weekend plans @danni0509. We have hair cuts but then a farm planned for Mon.

Allthenumbers · 26/05/2021 19:21

Hi all,

Would it be ok if i joined this thread? Dd is autistic 4.5 and due to start reception in a mainstream school (no EHCP) in September.

I’m struggling honestly at the moment. She refused to go to preschool today and she’s verbal but delayed speech. She couldn’t tell me why. She used to love preschool and even yesterday was saying she liked it.

I’m dreading school and thinking how the fuck am I going to get her settled in and turn up every day,

I have a two year old NT daughter as well who is great but handling the pair of them is hard. I feel done on,

If anyone has any advice re starting school I’d love to hear it.

I feel like autism has taken over my life.

Thank you all

MagratGarlikInDisguise · 26/05/2021 19:23

Advice: push to get the ehcna and the ehcp. Much more protection if/when schools start trying stuff on!

MagratGarlikInDisguise · 26/05/2021 19:27

Sorry, welcome! I'm just in one of those moods lately!

Allthenumbers · 26/05/2021 19:44

@MagratGarlikInDisguise ha ha and thank you.

Her preschool are reluctant to apply for an EHCP because she is coping well there so I feel a bit screwed. I don’t want to apply be declined and then have to wait to apply again. The school we’ve chosen has lots of autistic kids and has a flagship inclusion award so I’m hoping and praying she will be ok and they will support the EHCP process if necessary.

I just wish she could talk to me more. She’ll not be able to tell me if something has upset her and it terrifies me.

I read back a few pages. Did your son start school with an EHCP?

livpotter · 26/05/2021 19:57

Hi All the numbers. Sorry you had a rubbish day.
If you apply for an EHCP and they refuse, you get the chance to appeal. There is only a time limit on re-applying if they have conducted the assessment and decide not to issue an EHCP. So there's nothing to lose by applying now. Even if you lose the appeal you can still reapply immediately. You only have to prove that your child MAY have Sen and MAY need the help of an EHCP.

MGID sorry about the bad walk home. That's totally why we resorted to a pram for ds!

Danni BRILLIANT!!! Well done your ds!

Light yes half term on Friday.

We had a good morning here. Hopefully tomorrow will go ok too!

dimples76 · 26/05/2021 20:30

Danni that is the phrase I was looking for 'zoned out'. I think that is why DS does not respond when his name is called and sometimes why he has toileting accidents - it is like all his senses are turned off. I did mention it to paediatrician years ago but they didn't follow up re seizures and as I mentioned before I think that it is autism. It would be good to rule them out though.

Liv glad to hear that things are better.

Allthenumbers I think that the others have advised you well already. Definitely apply for EHCP assessment - nursery probably won't be so invested as she is moving on soon. I had to appeal against refusal to assess but LA conceded and then issued plan with full time 1:1 support for my DS.

openupmyeagereyes · 27/05/2021 04:51

dimples sorry to hear about the toileting issues, so frustrating. Is he just worn out and needing a break? Ds zones out occasionally too but I’ve never thought about absence seizures. I think he’s just in deep thought. I hope the drive goes well and that you enjoy your weekend away.

danni sorry about toileting your end too but brilliant that ds has made so much progress so quickly. You must be so happy to hear about him playing with the other children. Hopefully as he settles in the behaviour at home will improve.

Magrat sorry you had a difficult day, I hope you had a better evening. Only one half term to go, hang in there.

liv glad things have improved, we’re nearly there!

Welcome Allthenumbers, how long has dd been diagnosed? You’ve had good advice on EHCP’s, most of us have been through the process and liv is the expert. When nursery say dd is coping what does that mean? Do they have adjustments in place for her or does she just get on with things?

I know it’s hard but try not to let your anxiety run away with you re. the future. She will change so much and it sounds like the school will be well placed to support her.