Starting reception...

[Fivebyfive2]

Hi there,

My son starts reception on Wednesday. He's awaiting his assessment but we're also on the waiting list for occupational therapy and a meeting with the local childrens mental health team for his anxiety, referrals done by his GP. His nursery and Paediatrician strongly believe he's autistic.

He did well at nursery after a very rocky start, with help and support from amazing staff there. He's verbal, curious, can take him to the toilet, can follow simple instructions etc. But he struggles with fine motor skills, noise/busy environments and socialising - he also has very intense separation anxiety and needs solid routines. His sleeping is very erratic, it can be fine for weeks but then out of nowhere it will go to shite and he'll be up from 2am for the day or won't fall asleep until after midnight. It wasn't really an issue at nursery (he didn't nap, would just power on!) but obviously school is every day and a different environment.

He was declined an echp ahead of starting school, but we've had meetings with the school and they're aware of our concerns, they seem very supportive and have a good reputation for being inclusive etc.

I'm trying to be positive - I think with the right support he could thrive as he's bright and curious, just very much on his own wavelength. But I'm so so nervous for him. I just want things to be ok.

Anyway, I was just wondering if anyone has any advice, but also was thinking this could be like a support thread for anyone else in a similar boat for the coming weeks?

I think I'll be avoiding FB and some of my group chats, not sure I can handle post after post of "First day for This One, absolutely smashed it" etc 😬

Hi! Just thought I'd see how everyone was doing?

We had our first days this week. School itself went better than I thought it might. So far, no incidents, he's eating some food, and he even said one day was "fun." But we've had massive restraint collapse today. He's absolutely exhausted, no ability to listen, and the shortest fuse - can't handle his little sister at all. We've had some hitting us, which is rare nowadays. Obviously I'd rather this at home than school, but it's still been tough.

Oh, @BusMumsHoliday - that sounds like a challenging weekend. My husband has just said that it feels like our DS has the Sunday Scaries, but I think restraint collapse might be a better description!

Honestly, our week sounds very similar to yours. I haven't posted here because I feel like there's very little to say - he went in OK, teacher gave us the classic "he's had a good day", he's told us what he had for lunch accurately...

I suspect the answer is "wait-and-see", but after the complete disaster of DS's early developmental checks, I'd really rather never waiting and seeing again, thank you. I'm also used to working closely with nursery/pre-school to identify and provide support quickly (visual timetables, pictellos, social stories, etc) and so I find the lack of feedback frustrating.

DS's mental health seems OK, which I find reassuring. He's definitely more anxious than his baseline (for DS, this looks like asking what's going to happen on a specific day, sometimes weeks in advance) but he's eating, sleeping and had a lovely flirt with one of my best friends yesterday, and 12 months ago he would have run away on seeing them, so...

@LiterallyActually yeah the lack of feedback is a bit of a culture shock after nursery isn't it! But I guess it's just the sheer volume of kids, they can't do a detailed run down at pick up for that many TBF. My mum picked ds up on Friday and he went back in for a wee so they did chat to his teacher for a bit as everyone else had gone. Apparently he's doing really well and they're really pleased - they've put a morning routine in place for him which he's already getting used to and they said from next week they're doing a bit more structured stuff as well as free flow/play, so like "drawing club" "phonic practice" etc and they think ds will like it as he likes routine and structure.

At home he seems ok - the last 2 Saturdays we've had a very intense meltdown over something trivial, but yesterday's was over faster than last week. He's been eating ok at school and at home. Sleep is about the same. Wednesday night he only slept 10pm-4am so I let his teacher know at drop off, but he came out buzzing about eating spaghetti and touching a guitar so I assume he coped ok 🤣

@LiterallyActually I know what you mean about hating the wait and see, and about having less dialogue with school. I'm not sure DS has a visual timetable at school, and I'm certain he's not getting the breaks outside the room that he had at nursery. But I think we won't really know if he's actually "coping" for a good few weeks. But great that it seems to be going well for your DS.

@Fivebyfive2 glad your DS is doing well, too. Lots of upset over small things here too - I feel like my DS sometimes uses that as a release for bigger tensions he can't articulate.

Today was better here - less anger, though still lots of fizzy periods (I'm getting more and more sure he has ADHD, too). Quite sweetly, he removed the hard/breakable toys from the sofa before chucking himself about on it, so I guess that's something!

@Fivebyfive2 that's fantastic feedback from the teacher!

And yeah, @BusMumsHoliday - I think this week being a full week of school will be interesting here. I also really need to get back on the chasing up various bits and people for the EHCP appeal (gave myself a break to focus on school start).

Out of interest, is anyone's child doing any extracurriculars? DS will go back to music therapy one afternoon a week soon, but that's obviously not really an extracurricular. Last year he did swimming and gymnastics at local leisure centres on non-pre-school days, and he loved them both.

Everyone's advice seems to be to wait until DS is settled into school before starting anything additional, but he obviously has excess physical energy after school so far, and they were both actually really regulating activities for him previously - highlights of the week that he would talk about before and after. I'm really torn, basically, and would love to know what everyone else is doing!

@LiterallyActually I've not signed up for any extracurriculars yet. Like you, I'm worried about wearing him out but also the OT assessment we had recommended something like gymnastics or martial arts to help his vestibular senses. Was hoping to get regular OT set up so will probably see what fits round that.

I also need to get on swimming. My DS loves going with family at weekends and can propel himself a few meters but it's not actually a stroke - more an effective kind of flail 😂

😂

Just off to change my LinkedIn headline to "Reasonably Effective Flailer", @BusMumsHoliday.

We finally got ds a place in swim lessons that might actually work - local, weekend, 30 mins sessions with a 1-1 Sen instructor.

It started last Sunday, so yesterday was his 2nd lesson. The first one he screamed the entire time (but somehow actually did the lesson?) and yesterday he screamed for 10 mins then settled into it, so you know... Improvement 😀

Apart from that we won't be booking anything. Tbh most clubs/groups we've tried haven't gone well so we tend to just do our own thing. I remember thinking Squirrel club (mini scouts) would be good but it was a fucking disaster so we swore off anything for a good while. His swimming takes us up to October/November so hopefully he'll do these then we'll see about anything else after Christmas.

Yeah, I know those, “never again” feelings, @Fivebyfive2 - there’s a really popular toddler music group locally that makes me feel nauseous every time I see a poster advertising it, so much DS hated it a couple of years ago. I’m sorry you had to go through that.

We also spectacularly crashed out of ballet lessons, toddler tennis and Little Kickers. Little Kickers, actually, prompted the first email I sent to nursery about DS’s social development, and kicked off the whole diagnosis/intervention process. So I’m always strangely grateful to it.

Good luck with the swimming - less screaming is progress! I booked a mainstream class last year, but made a bit of an educated gamble with the time slot, and we ended up with a “private” lesson (ie, strange time so no one else signed up) with their lead SEN instructor. I’m not going to be able to find that outside of school hours, so I think we’ll need to go on a SEN class waiting list.

@BusMumsHoliday , really interesting that your OT report mentioned martial arts. I have a close friend with an autistic boy a few years older back home, and at their OT’s suggestion they’re in (I think) Tae Kwon Do, and they absolutely rave about it. I haven’t found anything locally that seems to be obviously neurodiversity-friendly around here, but I might start looking harder (I have to admit that one of my first thoughts is that DS would be thrilled with a uniform).

Reading this back, I must seem a bit intense with the extra-curriculars. I’m really not - if DS was neurotypical I doubt I’d have enrolled him in anything. I’m just really worried that school is not going to work out, and we’re going to have a ridiculous wait for a specialist placement, and if he finds joy and routine in something out of school, then that is something to look forward to and progress in whilst we’re home educating (I am not a natural home schooler!). I also think structured “planned fun” environments is where DS finds socialising easiest. But then the flip side is not overloading him, placing too many demands, etc…

Also should be noted that I hated every single one of my extra-curricular activities as a child, and have very strong memories of begging my Mum to let me quit piano, so this might not be the most logical train of thought I’ve ever had.

@LiterallyActually omg we tried little kickers too, ds spent most of the sessions we attended either crying or pottering around outside, refusing to go in. And I can still remember a local, laid back stay and play baby/toddler type group that I left crying twice because ds screamed the whole time unless he was outside picking up leaves with one hand and holding the buggy with the other. My god, the stares.

But he's definitely grown in confidence a bit all of a sudden. He'd never had done these swimming sessions at all just a couple of months ago.