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Original poster

Reception auties 2018/19 - thread 2

998 replies

openupmyeagereyes · 14/12/2018 08:05

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

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LightTripper · 30/05/2019 14:34

Hi open. I definitely think Beam would happily help with eating or anything else really. And I totally get your concerns because I feel them too - there are lots of things about ABA that I hate (its history, the way it is done in the US, the risk our kids end up feeling there is something wrong with them and they need fixing, etc. etc.). On the other hand I use behavioural strategies with myself all the time and do find them helpful: and everyone can benefit from learning new skills.

The thing that gives me comfort with doing it through a "distance" service is that because we are the only ones actually interacting with DD we can be totally in charge of what exactly is done, which I hope will limit any negative outcomes. I found they were good really for just brainstorming ideas for breaking things down into small steps, understanding the underlying causes for problems, etc. If it would be helpful if you PM me your e-mail address I can send you some of the materials they've produced for working with DD? We haven't done anything on eating but you can see the kind of input you get at least. Honestly the way we do it I'm not sure it's actually ABA at all (I am pretty sceptical of all the measurement stuff as to me most of this stuff seems inherently unmeasurable, plus your child would have developed anyway so you don't have anything to compare your measurements to...) But they are not pushy: they will support you to do things the way you want, but they will give you some ideas and some structure around that.

I think we may actually stop using them at some point, as I think we've kind of got the concept now: but on the other hand it is very useful to have the discipline of checking in every 2 weeks and stopping to think about what's changed etc. and we keep having something new pop up that we think we could work on, so we always think we'll carry on for another couple of months...

I'm sorry about the sleep Danni that sounds exhausting. Have you tried going to the GP about it? It feels like there should be support available but I know often my expectations about these things are over-optimistic Hmm.

danni0509 · 30/05/2019 14:34

You made me laugh when I read your post this morning.

Ds had a lie in until 5am Halo

I could sense your delight reading it,

the things we cherish haha!

Original poster
openupmyeagereyes · 30/05/2019 14:55

danni it’s anazing what becomes normal tbh.

When I stopped commuting to London before ds was born I remember being relieved that I wouldn’t have to get up so early every day. Ha! What do they say, man plans and God laughs Grin

I hope the paed can help before ds is 7. Maybe a tweak of dosage would help.

Light that would be immensely helpful, thank you. I’ll PM you.

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Original poster
openupmyeagereyes · 30/05/2019 15:41

danni also, ask them about circadin, the slow release 2mg tablet.

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dimples76 · 30/05/2019 18:57

Light that 'instructional authority' comment is spot on - it's amazing what DS will do if told to do it by anyone other than me.

Danni hope that you all get more sleep tonight.

livpotter · 30/05/2019 20:25

Good luck with the sleep tonight danni!

Also agree about the instructions. It's a Miri also if anyone listens to me in this house Grin

livpotter · 30/05/2019 20:26

Miracle!

Original poster
openupmyeagereyes · 30/05/2019 21:58

danni hoping for a decent night for you, and everyone else.

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LightTripper · 30/05/2019 22:36

Goodnight all. Sending sleepy vibes!

danni0509 · 31/05/2019 10:13

Thanks for the sleepy well wishes Grin

They worked, so pls send again!

Xx

livpotter · 31/05/2019 11:58

Brilliant danni hope you feel rested!

LightTripper · 31/05/2019 13:26

Right, I'm going to retire and start marketing myself as an internet sleep guru Grin

But seriously, I'm pleased - I think you both really needed a good night!!

Original poster
openupmyeagereyes · 31/05/2019 13:35

Pleased for you danni

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livpotter · 31/05/2019 19:32

I think today was one of the worst days I've ever had with ds. Thankfully I now have rose and it is the weekend tomorrow, so DH will be around! Hope everyone else had an ok day.

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openupmyeagereyes · 31/05/2019 19:52

Oh no liv, what happened? Flowers

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openupmyeagereyes · 31/05/2019 20:08

Definitely not the worst day here but ds has been a PITA since yesterday evening really. We’ve had several calm periods today but he’s done an awful lot of running up and down and leaping about (this is stimming), shouting and just generally being emotional and loud. It’s very draining. He semi woke a couple of times last night and was up at 5 again. I think it’s because he’s so over tired but of course his body (or mind) won’t give him the rest he really needs.

He does a lot of running around in the mornings now, it starts really early. I think it’s his way of trying to physically wake himself up when in actual fact he really needs to rest. Does that make sense? Anyway he sounds like a herd of elephants but he just will not stop despite our best efforts.

Anyway, he’s asleep now. We had a nice walk this morning (didn’t go yesterday) which tired him out briefly. Tomorrow PIL’s are coming so they can entertain him while I hide in the kitchen cooking Grin

He did some writing and phonics willingly again today. For phonics I covered the same words as yesterday and he blended them faster. For writing I’m going through the alphabet, getting him to practice a few letters at a time. Not doing much of either at the moment, I’m hoping it can become routine and increase over time. It feels like real progress.

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livpotter · 31/05/2019 20:16

He does a lot of running around in the mornings now, it starts really early. I think it’s his way of trying to physically wake himself up when in actual fact he really needs to rest.

Ds does this too. Usually right before bed!

Ugh just hitting, kicking, biting, peeing everywhere, hurting dd, flooding the bathroom three times! Plus endless echolalia and demanding things. It was very frustrating for everyone. Thankfully they are now both asleep.

Brilliant that he did phonics today. Hiding in the kitchen tomorrow sounds like a solid plan open.

Original poster
openupmyeagereyes · 31/05/2019 20:21

Ugh liv, that sounds really hard. I hope tomorrow is better but at least dh can share the load. Enjoy your Wine

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openupmyeagereyes · 31/05/2019 20:23

Do you think it’s the change in routine?

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livpotter · 31/05/2019 20:28

I think it's being cooped up in the house for a whole week and having to miss OT because of dd having chicken pox. Dd can also wind him up quite a lot.

I've got to take dd to a party tomorrow (she's all better now), so hopefully DH can give ds a good runaround in the park.

Original poster
openupmyeagereyes · 31/05/2019 20:31

Oh, of course. I forgot about the CP. hopefully getting out will help.

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dimples76 · 31/05/2019 20:44

Liv - commiserations, that sounds tough. I get cabin fever if I'm stuck in the house so I can relate a bit to your DS. Hopefully fresh air and exercise will help him get back in synch.

Light please send vibes for a lie in tomorrow! Good news Danni!

Open that sounds like great progress with the phonics and writing.

Original poster
openupmyeagereyes · 31/05/2019 20:48

Yes Light. Lie in vibes needed here too.

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danni0509 · 31/05/2019 21:53

Yes light guru sleep goddess! My way too pls, ideally the vibes should be for an 11am wake up if at all possible Grin

Sorry about today liv enjoy your wine. Fingers crossed for a better day tomorrow for ds.

Sounds fab open about ds co operating to do a bit of learning at home, we have been doing the tricky words today, ds knows quite a few now. I think he's up to about 30 words he knows from the list I printed on twinkl, I mark them off as he's learnt it (his teacher sent me a twinkl sheet home recently it had that familiar logo on the bottom) I didn't dare mention I have my own membership Blush

Ds Still can't read any books but I think we are getting there v slowly. He's good at blending but it's not progressed to reading the words fluently, he just blends every single word every single time. He only has the attention for a couple of minutes here and there and he's gone again so it's hard!

We have been doing what's one more or one less so I say a number then ask him what's one more or one less and then when he gets it right he makes me pretend to bite all his toes off then spit them out he thinks it's hilarious! honestly the things he has me doing! But as long as it's getting results Grin

He's suddenly counting more, it's like he's learnt the counting pattern and just carried it on, a few weeks ago he could get to about 25 ish now he's like 46,47,48,49 but then he says fourty ten, it's so cute!!

danni0509 · 31/05/2019 21:56

P.s he's only cute today because he's not been too badly behaved Grin