Reception auties 2018/19 - thread 2

[openupmyeagereyes]

Thanks to LightTripper for the thread title. This is the continuation of the thread for parents and carers of dc with autism in their reception year at school. Please join us if you can or, if you have dc due to start reception in 2019, feel free to drop by and ask us questions.

Thread 1

I'm also not sure ds gets the whole phonics thing. I wouldn't be surprised if one day he just started reading. I think it was the guy in 'life animated' who taught himself to read by watching the credits of Disney films on repeat.

The party went very well, thank you. I was so relieved. It was two hours and after an hour and a half he was ready to leave but I think he did so well to stay that long.

Jeb that must have been really scary, where had he gone? Ds used to have no sense of danger awareness but he’s a lot better now. Not so good that I don’t watch him like a hawk still but he’s getting there. Hopefully things will improve for you too, with time.

liv is there nothing like that near you? It’s about a 25 minute drive for us but worth it. Glad your dd is ok. I’ll check out StoryBots.

Ds doesn’t like subtitles so it wouldn’t go down well here

Open There is something similar but it's only once a month during term time. It's still good to go though and ds seems to enjoy it even though he gets pretty overwhelmed by all the people when it's busy.

Open I also have a H&S officer in the making. His main thing is checking where buildings smoke detectors and fire exits are - really not sure where that has come from! Glad that the party went well.

Oh Jeb that sounds so stressful - DS still has no sense of danger.

DS has been rather difficult today and I’m feeling guilty as I’m back to work tomorrow and my Mum’s going to have him all day....

Jeb I learned to read before school just from reading with my mum. I don’t think that phonics was used when I was young but I’m fairly old! Maybe your ds will just learn by himself. I was hoping ds would do the same but no luck yet. He doesn’t really like phonics unfortunately though he knows many of them.

liv ds will watch the same things over and over too. He’ll keep rewinding things on YouTube or if we’re watching tv he’ll want to watch a particular part or an advert several times, basically until we get fed up with it.

dimples don’t feel guilty, I’m sure he’ll have a lovely time. At least it’s a short week.

Gosh Jeb that sounds hideous. DD has done that to me only a couple of times... She moves so fast and in a supermarket it's so easy to disappear behind displays. Luckily she's nearly always singing or making some sort of noise so I can track her down. And I totally understand about the little H&S officers. It breaks my heart a little bit when she studies the instruction pictures at soft play for quarter of an hour before venturing in...I can hear her instructing the other kids on how to come down the slide safely and don't get her started on the trampoline one-at-a-time rule. She is so confused and tearful it makes me wonder if it's worth taking her at times but then the experience of the mild chaos, the random interactions, the opportunity to maybe learn some social skills does outweigh the discomfort....I hope. Once she gets more words maybe it will be easier for her... That's what I keep telling myself. There's an SEN specific soft play centre in Kendal, not far from us, which is brilliant. There should be more of these!

Open I was feeling guilty about my Mum not DS! Fortunately he was good for his Granny.

DS started new swimming lessons this evening and the teacher was brill with him. Plus I could sit right by the lane he was in and DS seemed so happy.

Ha dimples, glad ds was good for your dm.

The swimming lesson sounds great, is it a special session or just a regular lesson? Dh and I take ds swimming fortnightly. He loves it but just enjoys messing around and playing, he has no interest in learning to swim unfortunately.

I'd love to know more about the swimming too! DD used to do swimming lessons but when she started school she started to completely refuse. We kept trying for a while (hoping it would improve when she settled into school) but in the end we decided to stop - she clearly just didn't have the spoons for it by Saturday morning. We now just go for family swims which she enjoys, and she can paddle about a bit with armbands now, but I'd like to get back to proper lessons at some point!

Ds used to love swimming now he completely refuses to go anywhere near a pool. I've joined a gym nearby which does 1:1 swimming lessons for kids so hopefully once I've managed to get him back into the pool he might want to go to lessons.

Ds school do weekly swimming lessons in the autumn / spring, but ds wasn't allowed due to being in nappies. (He doesn't wear them for school now)

(Im certain that is discrimination?! not allowing him to do something every other child is able to do, due to his disability! I said he can wear a swim nappy? He does on holiday! But they wouldn't allow it)

I can imagine next time it will be, ds can't do swimming even though he's out of nappies because he still regularly wets himself etc.

The last swim session of the term was a fun inflatable session and I got a text saying something like don't forget your child's inflatable for the fun session tomorrow all the children are really excited etc etc

Pretty shocking when I think about it, how he is excluded for something which he has no control over.

I also always get texts to say don't forget to get your child's lunch menu in by such and such date! (chance would be a fine thing if the school would let him stay for lunch!)

1-1 swimming lessons at our leisure pool are £19 per half hour, I think that's really expensive! £80 a month we just can't afford at the minute. I couldn't let ds do group lessons I've seen them before, 4 children to 1 teacher, ds 100% needs 1-1 unfortunately. The group lessons I think are £9 per week so much cheaper, but just not suitable for ds sadly.

That is definitely disability discrimination danni!

That makes me annoyed for you Danni, and sad for DS. Do you think he would enjoy the swimming?

I took DS for a 1:1 swimming lesson but the instructor thought that they were too much for him - I think it is exhausting it always being their turn. So then I took him to a class where the instructors were in the pool but the spectator space was on the floor above - DS spent much of the class shouting at me.

Any way new class is just a mainstream class with Becky Adlington SwimStars at a local health club. The teacher is in the pool and there is a maximum of six children per class. I was sitting next to the lane and the children had arm discs on so I knew that even if the teacher was with another child that DS was safe. The teacher had a very good manner - calm but firm. At the previous class they just used woggles/noodles but DS loves going underwater so he would frequently let go....if DS wasn't shouting to me I was shouting to the teacher!

And Danni that is awful they should be making adjustments not excluding him - plus I bet a lot of the other children are weeing in the pool any way!

I think you can pretty much guarantee they are dimples.

We've had a very swings and roundabouts day here. Ds has been wonderfully creative and interesting on one hand and unbelievably destructive on the other. He is currently refusing to go to bed. He is sitting on the staircase shouting at the top of his voice every couple of minutes. I'm trying to ignore even though it's like some kind of torture technique. I'm not sure what our neighbours must think of us!!

Liv hope that your DS is sleeping peacefully now.

dimples you are spot on, I bet they are absolutely weeing in the pool! The class sounds good, were you able to speak to them first about your ds’s needs?

danni that must be frustrating. It’s so annoying when they don’t think about how they use group contact information. It’s a real shame he’s missing out. How is he doing with toileting now?

liv I hope your ds went to sleep not long after you posted. Hopefully less destruction today!

Re. Swimming, I can’t see ds doing anything he was told by an instructor at this point. I guess it might be different with school lessons but who knows. I don’t think our school does them until later, I must find out. I think all we can do is keep taking him for fun sessions until he starts showing an interest in learning technique.

We’ve had a good week so far. Today is the first day with no plans. It’s looking nice outside so we might go to NT for a walk.

Ds slept until 5am this morning. First time in over a week

Thanks it took about another 40mins before he finally collapsed in bed. He's still asleep now so he must've really tired himself out!

5am is a pretty decent lie in for you open!!

I think they are all recharging during half term... hopefully less stair-shouting by the end of the week!

I'm the same with swimming open - for now we're taking her at least every couple of weeks just so she's used to the pool, the smells, the changing rooms etc. so that when she's ready for/interested in lessons at least all that stuff is familiar!

DD is much better at taking instruction from other people than from us. Our ABA person told us that's natural for all kids - it's called "instructional authority" and teachers have it, parents don't! Sounds about right to me .

Light there’s definitely a lot of truth in that.

That said, I also think it’s because of a lack of consistency with us. For instance, if I’d been insistent from the start about ds doing a few minutes of phonics and writing every day I suspect it would have paid off but we haven’t been. He’s resisted and we’ve ended up backing off and trying periodically which mostly doesn’t work. Anyway, it’s my goal to try and do so going forward. Today he sounded and blended at, sat, pat, cat and mat using the mini white board which is great. He did a few yesterday too but I didn’t write them down so can’t remember what they were. I need to start keeping a log of what we’ve done.

Lately I’ve been mulling over trialing Beam ABA for six months to see how it goes. I know we discussed it ages ago but when I raised it with dh he was not keen. I think that most of what he was concerned about is probably outdated. I’d hope so anyway.

I just think it would be useful to get some structured support in certain areas, such as eating - I wonder if that is even something that they could help with? And if it doesn’t seem to be working or we don’t like the approach then we can cancel at any time.

I’m not sure we’re getting much out of the private SALT really. I’m holding on at the moment because I’m hoping we can swap to Lego Therapy which she’s hoping to start and I think would be good for him. I just think this sort of thing works best in a social situation with other kids rather than 1:1 with an adult only. The OT coming into school is really helping. She gives loads of ideas for the TA’s to work on and often leaves equipment there for them to use with him. It also helps socially because the other kids get involved in some activities, such as the Lycra tunnel, and they all have fun. She says the TA’s are great because they work on everything she asks them to. It’s worth every penny.

Sorry, bit of a brain dump!

We hit an all time low with sleep last night 😴 ds went to bed at 7.20pm after taking his melatonin at 6.40pm, he was sound asleep by 8pm so I did a few jobs downstairs got in bed myself at 9.30 & within 15 mins ds was wide awake and he was awake until FIVE o clock this morning he then went back to sleep until 8.10am. I've had about 2 hours sleep overall.

ridiculous with his sleep now! 7 hours awake during the night!!!!

He did something similar 3 nights ago but that was 4 hours awake not 7.

Fed up of it, he's on melatonin aswell so not really anywhere else I can turn

He was being really naughty in the night too spitting and pinching me and shouting & banging on the neighbours wall etc.

I've just been to Tesco to get some shopping going to clean up give him a snack and take him to the beach (it's raining) for a long walk in the hope it tires him out for bed, I'm going to do him some tea at 6.30 then bath and try his melatonin at 8.30 and put him in bed for 9 change the times about a bit, bed later doesn't usually make any difference but what else can I do!

I can take his shit all day but all day and all night is a bit too much!

I’m sorry danni, that’s hideous

I don’t think that melatonin is the last line of defence. Keep your sleep diary and then discuss again with the paed.

Open I think they can try other things but not until 7. That's what the paediatrician told me. X