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

Light great that your dd enjoyed sports day. Maybe next year she’ll feel more able to take part now she knows what to expect. There were children in ds’s class who didn’t want to take part on the day, though they’d been fine during the practice. The idea of everyone watching was too much. One girl was fine for about an hour and then started to lose it. Her mum said the teacher had to carry her in crying at the end. They are still so little.

While waiting for all the class races to finish towards the end ds decided he’d had enough. He came and said goodbye to me and then marched back into school with his TA. I was amazed he’d lasted that long tbh.

danni ds slept until 5:45 yesterday, a rare treat. On average it’s still about 5. We’ve not given him melatonin for the last couple of nights and he seems to be sleeping the same so far. When he’s on it he often seems to have the vivid dreams I’ve read about. In the night he’ll get upset about something still half asleep and it would take me a while to calm him down. After that he may or may not go straight back to sleep. If things deteriorate we’ll probably start again. How is your ds sleeping?

We’ve done some phonics a few days this week, not every day. I need to get back to every day.

We have SALT tomorrow. We’re going to her house for the session in preparation for the Lego therapy. Really no idea how it will go!

liv I hope the week is going ok.

Ds refused to go to school first thing this morning, I got him there about 10:15 in the end. No real idea why, he just said he didn’t want to go. He’s tired, been awake since 4:15, but that doesn’t usually mean refusal.

Thank goodness it’s the weekend. It’s the school summer fayre this evening so I’m going down early to help set up. Thankfully it’s a lovely day.

I hope everyone has had a good week.

Hope that the summer fayre went well, Open

We have had a difficult day - entirely my fault for accepting two party invites for the same day. The first one was at his favourite place to visit, an adventure farm - easy peasy I thought. Sadly mistaken - it was a roller disco!!! Somehow we got through it and then had a nice play until DS ran away from me. Obviously I should have called things quits and headed home but oh no we go straight on to the swimming party. All was fine there til we got out of the pool - getting dressed was a total nightmare with DS screaming the changing rooms down.

The day ended on a calmer note but I'm so disappointed in myself. I was so focused on helping him socialise with his classmates I lost sight of the bigger picture

Sorry everyone been a bit distracted!

Welcome jemima! Hope the SENCO meeting went well.

Amazing about the cricket dimples! Sorry you had a tough day yesterday. I hope you and ds feel a bit better today. It is so easy to do things like that, particularly when ds has come on such a lot.

Thanks ilikesweetpeas I'd never seen those before.

Glad sports day went well light. Love the medal shaped biscuits, what a great idea! Hope the fair went well this weekend.

Danni I hope everything is going ok with you, the throwing thing is a nightmare, ds goes through phases but luckily has never hurt himself like that. Yes I'm away next week!

Thanks open. How was the Lego therapy? Hope the weekend and the summer fair went well.

This week has gone surprisingly well (probably speaking too soon as DH doesn't get back till Tuesday morning!). I think the kids realise that they need to help me a bit. The hardest thing has been the morning drop offs. I think it's just too much of a change for both of them. Only two more to go though.
What has been a massive change is that I can manage to take the kids out together to the supermarket in the SEN buggy. It feels so great to be able to get them out of the house just for a bit. I was explaining to DS about barcodes which he found very exciting and was really helpful in handing me stuff from the basket.
I'm off on Wednesday till Monday and i think DH will have a pretty rough time of it but then again he will have PILs to help him. Really looking forward to having a bit of a break!

dimples I’m sorry the back to back parties didn’t work out. You’ll know for next time. I hope you had a peaceful evening.

liv glad the week is going fairly smoothly and that you’re able to get both dc out and about. It makes a big difference. There’s a Do you know episode about bar codes. I don’t know if it’s still available on iplayer.

Thursday wasn’t a formal Lego therapy session though the three of us did take turns to build with Lego. I was a bit annoyed by a couple of things. Firstly in the social story she sent for ds about coming to her house she mentioned that her husband works from home and that he likes it to be quiet therefore ds needed to be quiet. He’s a 5 yo with autism, I can’t guarantee he’s going to be quiet and that he won’t get upset about something and make a scene. Anyway, I did not read him that bit.

The other thing she said while we were there was that when ds had learned to take turns he might play Lego with another child (the actual Lego therapy). Well most of the time he does take turns fairly well and, anyway, isn’t that part of the therapy, that he learns and improves? I’m not sure how, or if, to raise these things with her. I need to mull it over. Dh thinks I’m reading too much into it.

This morning I have lost my temper about whinging for the iPad. God, I’m fed up with it. He wakes up at ridiculous o’clock (about 4:50 today) has the iPad for a while, then television until it a reasonable time to get up and have breakfast and as soon as the tv goes off he starts asking for the iPad again. I think we will have to start bookending it with the iPad. Tv off earlier and then a bit more iPad time before breakfast. It seems like giving in but overall screen time would still be the same.

Ooh thanks open i'll look that up.

That's bit of a weird thing to write in the social story. Particularly as It might make your ds more anxious. I'm not sure the taking turns thing would bother me so much. Then again ds is still very early on in taking turns and won't do it reliably.
Is she the therapist you've had for a while?

Ugh the whinging is the worst. Ds accidentally dropped his iPad down the stairs at smashed the screen, so he won't have one until I get it fixed next week. I think possibly he might have learnt the lesson not to drop/throw it this time, but who knows!!

I am feeling very sorry for myself as I fell and broke my ankle this morning. This is when being a single parent is super tough - I'm trying not to panic but I really have no idea how I'm going to cope.

Oh no dimples, are you in a lot of pain? Don’t panic, you will work out a system. Can you get family to help you out? I suspect lots of television & ipad time would be employed here but I can’t remember if it’s yours or danni’s ds that doesn’t watch.

liv ouch, that’s expensive. It cost me over £100 a few years ago just to get my (new) iPhone glass replaced when I dropped it face down on some concrete. Let’s hope he’s learned a lesson...

We had a brief swimming trip this afternoon. Ds only stayed in about 30 mins as the water was pretty chilly and he has barely any body fat to keep him warm so ends up shivering. It also took him about 15 minutes to get in. I think he was unhappy about his new swimming shorts even though he chose them.

Oh no dimples that's awful. My SIL did that a while ago when she had two very little boys, they got her into one of those boots really quickly so she could move about more easily. I hope it heals quickly for you!

Yes I really hope so open. I've found a place that repairs them for £70 (ouch but not as bad as £100!). It's good that ds got in the pool. My ds is refusing to go anywhere near a pool at the moment, which is a shame as he loves it when he's actually in the water.

We had one meltdown today but thankfully ds calmed down fairly quickly without anything being damaged. Looking forward to getting them into school/nursery tomorrow!

Well we had a horrible bedtime. Ds refusing, dh and I not handling it well and escalating the problem. Ds has been in a strange mood this weekend, distracted, lots of obsessive play and not listening. He’s asleep now but I don’t hold out much hope for a good night or for getting him to school tomorrow given the mood he’s in.

I hope you didn't have too early a morning open. Good luck with getting him into school today.

Ds is currently refusing to put on any clothes, going to be interesting trying to get him in today. I feel a bribe with chocolate coming on!

liv I hope you managed to get something on ds in the end!

We had an ok night, he was up for the day at 4:40. A bit of talk about not going to school this morning but he went in because he knew he wouldn’t get to go to a friend’s house after school if he didn’t.

I’m feeling slightly deflated today though trying not to. When we have these tricky periods I just end up doubting myself, dh and our parenting so much. I always liked to think that if we’d had a NT child that I’d have been a great parent, kind but firm. Ds makes me doubt that because when he really refuses to comply we have no way to make him. Last night when he refused to go to bed he was saying ‘I’ve won, your plan is foiled’ (scripted from tv) and he was absolutely right.

I need to do some reading. We go through good periods and I drop the ball, then when things get tricky I feel like we’re not prepared for them. I need to stay on my toes. I also need to work on staying calm and not letting the defiant behaviour get to me. Most of the time I do ok but not always and it never helps when I lose my temper.

Hi all!

Nightmare about your ankle dimples... have they told you how long you will be on crutches etc? Hope you can get some help. Don't feel guilty about the parties. You just never know do you? DD had two on one day a couple of weeks ago and actually did well (it turned out the entertainer at the second one was the same entertainer she'd had at her party, and not too loud/crazy, so that helped a lot!) You don't want to push them to meltdown point but you also don't want to be so scared of meltdowns that you never do anything, so it's a tricky balance and I don't think it's possible to guess right every time: so much depends on factors you have no say over!

We went swimming yesterday afternoon and the changing rooms were in such a disgusting state. I cannot believe how people will behave (multiple swim nappies just abandoned on changing room floors and benches, bananas and what I hope to God was chocolate ice-cream smeared all over the changing room floor, yoghurt (again, I hope) smeared all over the door of the lift - just vile). We'll be back to mornings from now on!

Hope the last couple of days of DH being away go well liv. I can't remember, are you away for work or fun? Hope you have a good break anyway.

That does sound weird re the lego therapy open: why would you do therapy for little kids in your house if it needed to be quiet? Sounds pretty unrealistic (and like liv said if anything likely to make him more anxious and more likely to be noisy I would have thought)? I didn't quite understand the bit about turn taking. Is she starting with turn taking between her and DS, and then suggesting that once he's confident with that she could bring in another child at the same time for DS to take turns with? Would they be autistic too? This is the bit I've never been sure about with Lego therapy. It sounds good in theory but I can't quite picture it. I do help DD with Lego but usually just helping if she can't find the right bit or if it's gone a bit wrong - she does all the building. Not sure how well it would go if I suggested taking turns on that part ! Sorry about the tricky bedtime. I wonder if the new activity didn't help?

We had a good weekend. Nice playdate with DD's friend yesterday (I am ignoring the swimming after as it was so vile but DD handled it better than I did to be honest, and we had a nice bedtime after). Saturday was trickier (school fete - which was fine but DD mainly just ate her ice cream in a corner and watched - I think she enjoyed watching though).

DD is very excited today as her caterpillar is the first one to be turning into a chrysalis at school!

Hope everyone else had a good drop off.

Have you had any news from the visiting EP Danni? I guess it's probably a bit soon?

Thanks open, yeah I got him in ok. One more drop off then DH is home!

I totally know that feeling. I think I have everything under control and then the kids do something and I snap. I never feel proud of myself afterwards and always wish that I had handled it better. I do think of it a bit like the description of sensory overload with the cup. That little drips happen though out the day then suddenly the spills over. Some days I just have a smaller cup than others!
I'm sure you are doing a fantastic job. It is hard and it always take a bit of time to adjust to a new phase, particularly if they have been 'good' for a while.

Glad you had a good weekend light. The swimming sounds revolting though! I don't get it either. Our local park is always disgusting in the summer, I really don't understand why people can't dispose of rubbish properly.
It's half fun, half volunteering, either way it's going to be a really nice break from drop offs/pick ups/bedtime etc...

Oh Open that 'your plan is foiled' comment would make me see red - good use of language though!

Glad that you had a good weekend Light despite the state of the swimming pool.

Nearly there Liv!

I am now in hospital. I need surgery but it can't be done until the swelling subsides. Currently tilted up on a hospital bed. Counting down til 6 when my Mum is bringing DS in

Light the pool changing rooms sound grim. I don’t understand people. Similarly the mess people often leave on the floor when their children eat at a cafe. I can understand if something has happened and you need to get a toddler or SEN child out quickly for instance, but mostly that’s not the case.

I’m glad dd enjoyed watching the fete. Ds mostly just enjoyed the bouncy castles at ours, the food is wasted on him obviously. We have our village feast this Sunday, it will be more of the same.

liv that cup analogy is spot on. It’s the little drips that fill it up during the day and then there’s no room for the really challenging behaviour. It’s my job to model calm behaviour though and that’s what I need to work on. I think it always comes back to modelling the correct behaviour.

dimples indeed. He’s learning some great vocabulary from Miraculous: tales of ladybug and cat noir. Not in the original French, but still

I hope you can get your surgery soon. How did ds cope with visiting time at the hospital?

A better bedtime tonight and apparently a good day at school. We had a good playdate with an NCT friend too. Hallelujah!

Oh no dimples! Hope that ds's visit went ok. What a nightmare for you.

You're totally right Open modelling is the most important thing. I think that's why it feels like so much of a failure if you lose the plot. Glad you had a better day yesterday! **

Broken ankle sounds a nightmare, I hope it’s a relatively simple (?!) fix and you’ll be back fighting fit in time for summer holidays.

As for modelling I think you’re right, although I only tend to hear my worst moments parroted back to me and none of the calm responses. Ds’s current favourite is “excuse me! you DONT talk to me LIKE THAT!” Bloody nightmare!

We’re in Belgium this week at a center Parcs and have coincided with s hideous heatwave - it’s 36degrees out here! No one slept a wink last night until DH put DS1 in the car and drove him round the streets.

That made me laugh Jeb. Fortunately DS recycled some of my nicer comments when I was injured, 'I'm here with you' 'it's going to be alright' 'you're very brave'. Unfortunately he is struggling with me being in hospital and was totally manic when he visited yesterday evening. Can't wait to see him.tonight though

dimples have you had your surgery yet? I hope you had a lovely visit with ds last night. What kind things for him to say to you

Jeb I hope the temperature has cooled. I imagine that Belgium is as set up for such hot weather as we are, i.e. not at all.

Ds hopefully settling down now. The problem is he’s getting more and more tired. He did sleep better last night though, awake at 5 this morning vs 4:20 yesterday.

Unfortunately another dysregulated visit yesterday. I'm waiting for ward rounds to find out it goes ahead today or not ..

Poor ds dimples, he must be missing you so much. And you him of course. Any news on the surgery?

I’ve been going a bit mad today printing things off for ds’s writing - pre writing sheets from YouTube links and large cursive letter tracing sheets from Twinkl. I’ve been watching YouTube videos on learning to read and write and trying to get myself organised. I want to help him progress before September with a little bit of each daily if we can manage it. I’ve also got the Kumon books which I need to fit in. I’m going to put the sheets I printed today in sheet protectors and I’m not sure whether to do the same with the Kumon sheets too.

Dimples how are you? Have you had your op? I hope your ok X

Open we got these re usable sheet things (I'll add pic below) I just slide the twinkl sheets in and he just writes over them in dry wipe pen and we wipe off and re use. Although yesterday he bit the nib off a dry wipe pen and turned his teeth and tongue black!

Be back on later, loads to tell you all! Lol x

No op yet - unfortunately more high priority cases came in today so I got bumped from the list.

I shall look forward to your update Danni I was wondering what happened after the EP meeting