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've not actually heard anything from the EP or the school

Although I did have an appointment letter from school in ds book bag for ds' annual review a few days after that chat with EP & in with it I had a form to fill out for his annual review, was I happy, did I want to change anything or add any additional comments - I wrote (ds hours) so I can speak about it then.

Ds has visited his new class several times and met his new teacher.

Apparently he just wanted to stay in the toilet with his 1-1 washing his hands..

He's happy to go down though (they have been taking him every day)

We had an incident in school last week involving a pair of scissors were his afternoon 1-1 got injured by ds and she needed to go to hospital & has been wearing a bandage all week.

Do you know when you walk your child down the school path and hang your head bcos you have that child

His lack of safety awareness will be the death of me!

Oh danni

How's ds open?

Ds sleeps settled a bit the past fortnight (he's been on melatonin 8 weeks now so maybe kicking in?) you know as I've said that I'm laid in bed and I've touched my wooden head board about 4 times no joke! I'm going to sleep holding on to it

He's been asleep for about 9pm and waking about 5.15/5.30am ish, with the odd wild night thrown in of course, but it's better than it has been.

He went through a horrible period of waking every night and being up for hours, one night he was up 7 hours! So when I say it's better I mean it's not been like that, he's still getting up but not every night in a row (fingers crossed)

He did get up at 5 past 3 one morning last week asking for breakfast, I just said sleep! you can have that in 4 more hours mate

Post overload. Sorry.

Open ds foods gone to shit, you know I said he was eating better, well not anymore! The past few weeks have gone down hill.

He won't touch sausages, refusing porridge and toast and bananas, pissing around with his bolognaise which is about the only meal I rely on for him to eat. He's inspecting the life out of anything I make, I was waiting for him to whip a magnifying glass out his trouser pocket at tea time last night! his head was practically inside the bowl and he was sniffing it looking at me like I'd laced it with rat poison ffs!

he's been eating these things happily for a few months now.

Today he's barely eaten a thing.

I honestly don't get it.

danni I’m so glad that his sleeping is improved, you must feel better yourself because of it. Last night ds went to sleep about 8:30, he was up at 4:47.

I was going to ask you how his eating was going. What a pain it’s gone downhill again. Ds’ is still the same. He definitely has times when his sense of smell is very acute and food smells bother him. Other days it doesn’t seem to. One morning we were at the table and I was eating raspberry jam on toast and he looked scornfully at it and said ‘I don’t want to see that’ (when he’s bothered by our food he doesn’t like to look at it). I said to him that it was just jam on toast and he said oh, ok and was fine. He’s never eaten jam but he knows what it is.

It’s often still a pain to get him to the table too. Often it can take an hour from putting it on the table to him eating it. We frequently resort to feeding him wherever he is as a last resort and this is even just acceptable food. Sigh. His diet is around 50% toast and peanut butter, he gets through about a jar a week.

Yesterday he did some mark making drawing downward lines with a dry erase pen on a sheet protector. The problem is because he’s a leftie he’s worried about getting the marks on his hand. That technique may not work for us which is unfortunate as I’d prefer not to use a new sheet each time but I may have to. I decided that he’s not ready for the write from the start book. Until he’s confidently using a pen or pencil in the correct grip there’s no point. With a dry erase pen he can work on holding it correctly without having to also press harder to make a mark. I found these videos quite useful and she has other similar ones:
m.youtube.com/watch?v=3zmgMz7u9LM

m.youtube.com/watch?v=tkUrTeFDNJU

Hope you get your op tomorrow dimples - let us know!

Glad DS's sleep was better danni, but sorry about DS's tricky day. How is he usually during the holidays? He seems to learn so much with you at home, hopefully he'll manage to recover a bit in the break and find eating etc. a bit easier. I think anxiety and tiredness is bound to make sensory issues worse, so maybe it will improve the food situ too.

All fine here though I have a cold so feeling sorry for myself. Have to give 2 talks tomorrow so hoping my throat survives at least, and then going to the GP about dizzy/faint spells I've been having (which actually have been much better since I've had this cold...maybe it's a curing cold??)

Had my op yesterday and a more successful visit from DS so things are looking a bit brighter. Apparently the challenge today is to convince physio that I can manage at home (or rather with DS and I staying at my Mum's. Unfortunately as I was typing that they came and did my obs and my blood pressure has fallen.

It was moving up day at DS's school and he seems to really like his new teacher. I'm waiting to hear whether or not he is keeping the same 1:1

Fingers crossed he is!

We've just found out that (like last year) one of DD's teachers from Reception is moving up with her to Year 1, so that's brilliant... keeping everything crossed that will mean an easy transition for her but we'll see, there are always surprises!

Really hope the physio signs you off to go home today. Hopefully the fact you have your Mum to help you for a few days will make the difference.

dimples fingers crossed for the 1:1. I’m glad you got the surgery done, hopefully you’ll be out soon.

I hope the GP appt goes well Light, and the presentations too.

We have our monthly family assembly later, hopefully it will go well. Last time ds was a bit unsettled and wanted to sit with me which he’s never done before and I had to leave early with him and his TA.

Hope you are all having a good week. It sounds tough, what with broken ankles and frustrating meetings. I'm not sure how to tag people properly but wish you all well. It's been a tough few weeks here. DD's class assistant, who she is very attached to, has been off sick. Cue huge anxiety increase, poor sleep, regression in toileting, odd behaviours such as hand licking... Had a helpful meeting with the SENCO about interim strategies but also frustrating that the GP referral to the pathway process had been delayed as DD was two weeks too young to fit the criteria. Hopefully GP will resubmit the paperwork now DD turned 4 last week. Took DD out of school for a week with the hope it would act as a Control-Alt-Delete reset (!) and I think it has worked. She seems much calmer now and first day back at school went well, though the TA is still off. Today we met up with some folk from the local home-ed group at the park and though we were there for four hours DD didn't speak to anyone else or attempt any interaction. It's odd in a way to see her on the one hand so happy with her own company but at the same time so isolated. It's really starting to show now she's older how different she is to same-age peers. She bounces and dances along instead of walking, for example, babbles away in her own language while intermittently quoting perfect lines from her favourite audiobook Danny the Champion of the World. "Harold! Take that filthy bird off my table!" is her absolute cracker of a line and she squeals with delight right after and seems so, so happy. She's a delight yet also an enigma...I find I feel honoured to be getting to know her. What a ramble of a post... Just wanted to check in, really...Keep well, all...

@FurryCat1978 I know what you mean about the whole enigma thing. We often are dumbstruck by some of the things DS comes out with - the other day he recited back the entire first chapter of Paddington bear perfectly. We don’t own the book, just the audiobook which he likes listening to in the car, but he hasn’t heard it that many times. Then he gets mad with us when we can’t recite him the story at will.

Have any of you had the conversation with your kids to explain that they are learning and growing a little bit differently to other kids? We have no idea when and if it’s right or not. Probably not helpful right now, but assuming when they are older...

Furry I hope dd’s TA is back soon and she settles down. The pathways differing by area is just a massive postcode lottery and so unfair. My ds was diagnosed at 3.11 so how can your dd be ‘too young to fit the criteria’ even for referral? Ds definitely became more noticeably different to other children from about 3.5 onwards I would say.

Jeb we’ve not had the conversation with ds yet but will do so in an age appropriate way when he starts to question any differences. For instance he has never questioned, with me at least, why he is always with a TA at school and no other child is. It’s his normal I suppose. In the meantime we will just be positive about the differences all sorts of people have.

And yes to the enigma thing. Ds won’t answer a lot of questions about certain things, I’m looking forward to hearing the answers when he’s older and more able to articulate it.

Hideous night here. Awake around 2:45 and still up despite melatonin being administered. He looks a bit sleepy now but we’re downstairs watching Toy Story not tucked up in bed, sadly.

We've tried to tell DD Jeb but don't want to make a big drama out of it and she hasn't really picked up on the hints yet (e.g. we've asked her if she ever feels like the Zebra in All My Stripes but she just says "no" - even though she has literally hidden under the table during a fire alarm before, which I don't think she's forgotten.... but anyway, it doesn't resonate enough that she identifies with it yet!)

I'm going to just keep looking for opportunities, and keep talking about her brain working a bit differently in some respects, and we'll see where we go. I've been agonising about it a bit and found this article by Chris Bonnello really useful way to think about it:

autisticnotweird.com/when-should-i-tell-my-child/

Hope all's well! I'm knackered so had better log off and go to sleep. Still coldy but feeling a bit better. GP thinks I may be a bit anaemic so hopefully that's fairly easy to fix if that does turn out to be why I've been dizzy/faint. Nurse can't fit me in until Thursday though, so likely another week at least of feeling a bit blah. Wonder if I should just get some iron now ... but then presumably the blood test won't work so I just need to be patient.

@LightTripper Sorry you're feeling rough. If you can get it, Floradix is an awesome anemia fix (depending on the cause, of course, but it blasts that sluggish tired feeling away!). It's a much more gentle treatment than iron supplements, kinder on the gut, and works really quickly as it's in liquid form.
@Jeb86 I've not had a specific conversation about difference/diagnosis, though because DH is also ASD and has some fairly obvious quirks I have had to talk through some things. Keeping it very light, though, and really just emphasising that everyone is different and likes ways of doing things, that some things are easy for some people but really hard for others, that some people need a bit of extra help sometimes... Trying to keep it so that other people's differences are mentioned too, so there's not a "me and them" split. DH says he used to believe he was an alien when he was little... Utterly convinced due to the differences he could see between him and his peers. I think it's definitely important to have that conversation with DC. There's a few good websites advising about this topic. Hope you find them helpful.

Yes, we try to talk about other people's differences too! This morning we were talking about the school show and DD was a bit envious that one of the other girls is being the butterfly (all the other kids are being caterpillars). I said "well X will probably get a lot of attention, being the butterfly, do you think you would like that?" and DD said "no" so I said "but I think X really likes getting attention doesn't she?" and DD said "yes she will love it" so we agreed it was the best way round. I'm hoping just having lots of conversations about different people's brains working differently and making them like different things or find different things hard will help smooth the path and make it not too big a deal when she eventually understands what autistic means.

I like the way you explained the caterpillar/butterfly thing to your dd light. I remember finding things like that at school very challenging.

We haven't had a talk with ds because I honestly don't think he knows/doesn't care that he's different. He speech is still very limited as well so currently he wouldn't be able to have that kind of conversation either.

I got home yesterday. Had an amazing few days, which was lovely. When ds got home from school he kept coming over to touch my arm. I think to check that I was real and actually physically there!

Hope everyone else is well and that you are recovering from your operation dimples.

Glad you had a good few days Liv and DS's reaction sounds so sweet!

I haven't talked to DS about being different because I really don't think he gets that he is. He knows (and has been teased) about being shorter than other children so we have talked a lot about physical diversity.

We're struggling with our new regime - staying at my Mum's with DS. Normally there are 2 of us at home and we have temporarily created a household of 8 including 4 SN children, a nonogenarian and me. Probably enough said!

We need a new thread!

Light I hope the blood test confirms and you can sort things out ASAP. Lovely way of explaining the caterpillar and butterfly to your dd.

Furry what a shame for your dh. Hopefully our dc can grow up with more self confidence and in full knowledge of the individual strengths that they have as well as differences.

liv glad you had an amazing trip, how sweet of your ds.

dimples that does sound stressful. Any idea when you’ll be fit to go home?

Tricky pick up today and it sounds like ds wanted to play rather than work. Hopefully tomorrow will be better! We have the class trip on Thursday. I’m trying not to be nervous because he’s surprised me so much this year but I am a bit apprehensive.

We do need a new thread, is someone going to do the honours?

I've set up the new one here!

www.mumsnet.com/Talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3

I haven't linked back because I'm an idiot - will go and do that now!!