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

Hi all! Hope you're having a good weekend (and more sleep tonight!)

I just found this very nice video on YouTube explaining autism to kids. I thought I might use it when we tell DD (though I've no idea when that will be, she still hasn't said anything to suggest she knows she's different despite being the only kid to sit out classes etc so although we talk about different brains and differences being good it hasn't felt right to talk about autism yet). But I think this is a nice short intro that is positive but still recognises the things they find hard. And nice and short!

ellie I understand what you are saying, however it seems like he needs the support now. The EHCP is reviewed annually and, hopefully, when/if he doesn’t need it any more then it can be withdrawn at that point rather than denying it from the off. Fingers crossed for you anyway.

Thanks for the YT recommendations Light.

A better night here thank goodness. He slept until about 4:50, so more like his usual time.

Open having poor sleep here too which isn't unusual.

Ds awake last night 11.50pm until 3.15am.

What time does your ds go to bed? If he's anything like ds it makes no difference in a later bedtime. He can go to sleep at 11pm and still wake at same early time.

Do you have slow release melatonin? Do you have liquid or tablets?

Open ds also takes a long time to settle, is your ds like that?

I have to sit next to his bed in the dark until he's asleep, sometimes it takes 2 hours if not more until he's asleep x

danni ds settles fine, thankfully. He just has periods, well it used to be periods but now more sporadic in general, where he wakes either in the night for a couple of hours (less common now) or just wakes early and doesn’t go back to sleep at all. Bedtime makes no difference, he wakes early regardless. Sadly we have mostly got used to it. Last night I was asleep by 9:30 and dh and I take turns to get up with him though for a couple of months after he he started school he insisted I get up with him every day.

We have the slow release tablet form of melatonin, ideally I think we need both I think. I may speak to the doctor about it. They don’t seem to encourage the use of the fast release when they wake in the night, I’m not sure why. On MN I’ve seen some posters say it works and some where it doesn’t. An earlier dose followed by a later doesn’t seem to work.

If your ds has a paed still then I would definitely get them to prescribe it as the gp can’t do so. We were ‘lucky’ in that ds started waking ridiculously early between his 6 month paed appointments. At the follow up it had settled down but I mentioned it and the paed put in the shared care notes that the gp could prescribe if needed which it later was.

He sees paediatrician regular open he just hasn't been allowed melatonin up to now as he had sleep apnea so was unsafe but that's resolved since he had an operation before Xmas.

Just waiting for our next appointment in April to get the melatonin.

I phoned 2 weeks ago and she needs to see him first but then couldn't offer appointment until end of April

Ds sleep has never been great unfortunately.

His sleep is worse now than it was when he had sleep apnea

Relief is hopefully in sight then!

What have school said about increasing his hours?

Open they still haven't. He's on his usual 2.5hrs a day, I have asked twice since the start of term 5 weeks ago.

The last time I asked she said she would let me know which was a fortnight ago and has conveniently not mentioned it since, I'm annoyed that I should have to keep asking so haven't mentioned it again.

Now I'm being told he's getting upset around 11.30am which is very convenient as it's around about the time I'm picking him up, it's almost as if that's there excuse that he's unsettled deal with it

I'm speaking again tomorrow & if I'm fobbed off again I'll phone his EHCP case worker, he's half way through reception now and has only done 12.5 hours a week since he started.

I've a feeling he won't be attending there long term though tbh his behaviour isn't great.

School had the cheek to send a letter home (all parents received it and doesn't apply to ds as he starts at 9.15am anyway) but it said something like dear parents we have noticed a number of children attending late, by sending children late children are missing out on education, even 10 minutes per day adds up to x amount of hours lost each year and we do not want children to fall behind with their learning.

I'm reading it thinking you absolutely joking me??? My sons missed out on 4 hours per day for 6 months.

Rules made to suit!

His 1-1 also works with the class and other sn children in the afternoon......

Have you spoken to sendiass? What are your options for other schools?

That letter would have made me crazy Danni! Can you get a meeting with the head? They really need to give you a plan!

Oh Danni you have the patience of a saint! Hopefully the HT or Council will sort things out soon. Can't help thinking that the reason he is getting upset at 11:30 is because he is anticipating the transition.

Hope that the sleep problems improve soon. My boy is ill and had very disturbed night - he normally sleeps well and I think I need to appreciate that more rather than taking it for granted. I think I'll definitely have to keep him off school and I have a very ambitious to do list for work tomorrow..

dimples I think you’re spot on, maybe he doesn’t actually want to leave. danni does ds tell you he likes school?

Sorry your ds is poorly dimples, hopefully you’ll have a better night tonight.

We’ve given ds melatonin again, he’s never had it two nights running as I’m such a wuss. If he has a good night tonight we’ll try without tomorrow.

Thanks for replies

I don't think it's because he wants to stay bcos he starts to say mummy time when he's getting upset apparently, but his ok when he comes out.

Open he doesn't say if he likes school or not yet bcos he's not at that level of communicating his thoughts with me yet, but he seems to enjoy going and they tailor every thing to his interests & do lots of fun things with him and he loves his 1-1 so I'm sure he likes going.

I just think it's fishy the getting upset comment only started when they increased his hours by 15 mins & id asked when they were being increased again. so I feel that's what there using as the excuse to not increase again, but unfortunately whether he's upset or not they have to work around it, no I don't want him at school getting upset obviously, but what about in yr 1 or 2 etc when he's still upset, will he still only be on 2.5 hours a day?

He did 2 years at nursery with two of the days he attended being 7 hour days and he was fine well he was fine I don't think the nursery staff were

I keep being told, the senco or the other teacher who sorts support out is off, but do you know, I'm starting to think bloody hell how much time do they have off! hmmm.

His speech therapist came this week & said to me she works with quite a few other asd children and she's not met a 5yr old on her books on so little hours at school. She said even those without ehcp's were full time and she was v confused by it.

On another note I've cancelled his Salt. The lady was lovely, really nice, obviously very experienced in her job.

But what she's doing at home is what we do every day. So after 2 sessions I don't feel like I can justify paying for something we've incorporated into his life as standard anyway, she comes for 45 mins but ds has v limited attention and I'm constantly getting him and sitting him back down, stopping him throwing, getting him out of her bags and stopping him climbing on her etc she wants him to do her game he wants to do his own thing, he's very difficult to engage and I don't want to be paying £75 a pop while he's doing that.

The Salt was fine, she said she totally understood & I can contact her any time in the future, she said he will mature with time and his attention will improve the more we work on it and that's when the real learning can happen etc. (His attention believe it or not is so much better than 2 years ago, but still very limited)

She said keep doing what im doing she said i was doing fabulous teaching him so that made me feel better as I always feel I'm not doing enough and what else could I be doing with him, she said ds has a good range of vocabulary, she thinks he'll talk 'properly' one day but she said it will take a few years in her experience to really work the language out, she worked with a child similar to ds and he was 8 before he really started talking so it does give me hope.

She said his concrete understanding of instructions etc is were she wants it but his abstract understanding is years behind but she said that's often the case with asd.

She said if he hasn't got a grasp on the abstract language, he won't want or wont be able to speak about things he can't see, this is why he has lots of issues talking his thoughts as it's not concrete in front of him, well it was worded a bit like that anyway, but I understood perfectly what she meant, lol!

I've got lots of things in mind to do for the abstract part and the blank levels what Jeb recommended are fantastic (thank you) so I'll keep doing that and maybe in time I'll book her again.

I explained all this to his 1-1 & she agreed & said since September when she started working with ds she thinks he's doing brilliant and she's really seen an improvement in his speech but mostly his understanding and she said he was a superstar.

So it does make me feel a little less guilty in my decision.

Xx

Sounds like you are doing brilliantly Danni but the school really need to step up! As you say, it's a challenge but if your SALT is saying that all the other children she knows are doing more hours then I don't see why your DS shouldn't be getting those hours too.

You definitely shouldn't be feeling guilty though - sounds like you're doing a top job!

danni NT dc in ds’s class still get upset at drop off sometimes. I’d hazard a guess that some get upset at hometime too occasionally. There were a couple of children who had never attended a setting before and one little girl cried all the way through her first settling session, except where she fell asleep! (I was there with ds). Your ds is entitled to an education and they need to look for ways to distract and engage him. It’s a disgrace imo. What is their plan for transition to year 1 for instance?

Wrt your SLT, I think you’ve done the right thing. It’s a waste of your money if his engagement is not there yet. It’s hard isn’t it as we hear so much about early intervention and worry our children are potentially missing out on something we could be doing. I do think though that we are very lucky. We either have an early diagnosis, or are sure enough anyway that we parent accordingly, and we’re probably already doing more for our dc than many other parents in previous years who did not have that same understanding or believed their child was just naughty or whatever. We already make accommodations for them, try to boost their conf a, have secured support for them at school (where needed) and are trying to understand their needs and what we can do to help them. I believe that this will have a positive impact on our dc as they grow up.

Ds has made no negative comments about school or about going to school the last two mornings which is a welcome change. We didn’t give him melatonin last night and he’s been awake since 3:45 today. I think we may be getting to a point where we have to give it regularly, I don’t know.

Apologies for typos above, I’m still not able to preview on the mobile site.

Quite a sad video from Connor Ward on YouTube this week.

I asked again today regarding ds hours & i asked for someone to contact me, his 1-1 said the teacher who sorts it is still poorly (she's been poorly since November!!) she knew I wasn't happy (not with her, it's not in any way his 1-1's fault)

Hour later his teacher phoned, she's had a chat with head teacher and they've decided, ds can go 2.5 hours in the morning which is what he does anyway, then I'm to pick him up at normal time before lunch, bring him home for 2 hours for his lunch at home and some chill time?? (ds doesn't do chill !) and then take him back for the last hour and a half in the afternoon......

So now my day is as follows.. I leave the house take ds to school, drive home, clean his morning mess up, by this time it's time to drive back to pick him up, drive home give him lunch, drive back to drop him back off, drive back home clean lunch mess up, by this time I've got to drive back pick him up, drive home and repeat 5 times per week.

Okay.......!

at what point do they think this is acceptable?

When I asked why, she said before lunch during lunch and after lunch is too busy for ds & the children have free flow time and he doesn't enjoy this when all the children are in his way and all around him.

The jokes on me isn't it?

Tomorrow I'm telling ds school, no ds will not be doing those hours.

I will not be back and forth to that school so many times in a day, it's ridiculous.

Ds is such a handful getting to school in the morning, won't get in the car, climbs out while I'm driving, won't get out the car, lays down on the path needs carrying, then staff have to come out and help me with him as I can't carry him & all his bags and hold doors open simultaneously while he's sliding head first out my arms.

So why make it doubly hard for me having to get him there in an afternoon aswell.

It's not them having to do it though, so they won't be bothered.

More I think of it, the more its winding me up! What a ridiculous thing to come up with.

That's ridiculous Danni! Have you spoken to your local SENDIASS team? Or contacted IPSEA? It sounds like you need someone to back you up.

danni I agree, it’s ridiculous. They need to extend the time he is already there. He has 1:1 support. If they haven’t already, they need to set up somewhere quiet where he can go during the times that are stressful for him. He can also eat his lunch somewhere quiet with his 1:1. It is important that he is in school, getting used to the routine and learning. It does not matter if he is not with his peers at all times. Definitely speak to SENDIASS. I hear good things about ours, I’ve never used them but I’ve heard the guy in charge speak a couple of times.

Not a great day here. Ds has still been waking quite early despite the melatonin, 3:40 today (and 11:30 for a short while) and we all have colds. He was super tired, his teacher and the favourite TA are both off sick and he was so whingy and clingy this morning that after half an hour I ended up taking him home. Imo there was not enough resource for me to be confident he would get 1:1 support all day as while I was there there was only a supply teacher and 1 TA. It seemed like a recipe for disaster. He didn’t nap all day either. Praying for a better night tonight!

I'm sorry you've had such a bad day open. It sounds like you made the right decision taking him home. I hope you all get a bit more sleep tonight.

Half term started for us today. Ds unfortunately has a very high fever and has been asleep most of the day. Not entirely sure what's wrong but he asked me to put a plaster over his ear, so I imagine that's where it's hurting.

Thanks liv I’m going to sleep myself shortly.

Your poor ds, I hope he’s better soon. Earache must be very painful. Last day of school here tomorrow, hopefully everyone will be back to work.

Sorry that your DS is having a bad day open and about the poorliness liv.

Danni I agree with the others, that sounds crazy. Surely this is an illegal exclusion? If they don't have the resources to keep him in school they need to apply for them through an EHCP (and use their general SEN budget to support him in the meantime)? Apart from what it does to your day (which is bad enough!) that is a crazy number of transitions for your DS to have to deal with. Although DD is doing quite well at drop off now I can still tell she is very anxious around it and often close to tears . She has a bunch of little rituals that she uses to help her deal with it, but all that going and coming and going and coming again would drive her crazy and I can't believe it would be easy for anybody on the spectrum.

They basically need to find something else to do with him in the bits of the day when the curriculum the rest of the children are following can't accommodate him. They can't just endlessly make it your problem!